As He Lay Dying

The Sea and the Rock

2008-11-05T00:01:00.004-06:00

I wrote this a while back for Dad's 2008 memorial but never got around to posting it till now...

The Sea and the Rock

Memories of you are like solid rock
worn by time but still here
polished with rememberance
caressed with love

when we need you
we walk to the sea
let the water wash our pain
as we sit on our rock
heated by the sun
feel the strength you give to us
and know you are here
in the earth beneath our feet
grounding us
in the wind blowing across us
sweeping away our fears
in the sun shining down
warming us
in the moon ever wakeful
protecting us

steadfast as always
forever you are our rock

Swapna Padmanabh 2008

Missing You

2007-01-19T00:07:00.000-06:00

It's been more than a half a year since I last posted to this blog. Since then I've done nothing to it, in fact I think I kind of put it out of my mind. But Dad hasn't been far from my mind. He's always there. Things have been okay, but not great. Mom had a TIA (mini stroke) apparently caused by the breast cancer medication she was on, so they took her off of it and put her on something new. She's having a hard time switching over and there's lots of nasty side effects. Hopefully they will soon pass. It's hard to hear her sounding so depressed and know it's all because she just feels so horrid from the drugs.

At what point do you decide quality of life is more important than feeling kinda crappy every day?

However, that's not something for me to decide, so the best I can do is to support her in whatever decisions she makes. Sadly, one by one all of my friends are coming over to this dark little place I'm keep slipping in and out of. It's that place you end up in when your parents get sick, get old, or just slip away in the night. Your left with a void, a fear, a sense of responsibility, or the worst of them all...wondering if you are doing everything you can.

Blah, just feeling a little blue, things are actually not as bad as they just sounded. Mom is in Toronto and will be in Florida again in a few days. As much as I go insane when she's here, I really miss her, and knowing she isn't feeling well makes it that much worse.

I'm also missing Dad a lot these days. It's hard to describe. I think of him every day, but each day is so different from the other. Once in a while I am doing something that I know he would have loved, and knowing he won't ever get to play pool again, or eat his favorite foods, seems sad for a moment, but it passes. Then there are the days when you remember something silly he did, and you laugh out loud. Those are the good memory days.

There are days when you feel lost and wish he was around to talk to, to give you advice that you badly need, days when you are about to do something and you know that if he's able to watch he's cringing, so you think twice, the days when you hear mom's voice crack and you want to weep with sorrow for her and for dad, days when you find a little note he had written and it just catches you off guard. Those are hard moments. Same with days that remind you of his last days, of how he looked in the few days before he died, how pale and fragile he looked when he died, and those awful doctor's reports you can't bring yourself to throw away. You drag them out and read over and over about these foreign concepts of types of cancers, and types of tests, knowing it could all be in another language for all that matters.

And then there are days like today, when you wake up thinking of him, and every moment that follows is filled with reminders of him. For me, those days end up with me staying up late at night, thinking of him while tears slowly course down my cheeks, not quite knowing what's making me so sad, not ready to stop crying quite yet, but not really depressed either. It's like a day when you give in to feeling lonely and missing him.

I think I'll go slip into his worn out shoes that are far too big for me, wrap his scarf around my neck while I sip on tea, pull one of his favorite books of poetry off the shelf, and pretend he's here reading aloud to me.

-Swapna

Dad

2006-05-08T22:47:00.000-06:00

It's been two years since Dad passed away, and yet I feel like it was just yesterday that we were matching wits playing scrabble. The memory of caring for him has somehow faded just a bit since I finished writing the first draft of his story. For that, I am actually grateful. Sometimes raw emotion is just too much to deal with on a daily basis.

If he were here today, I know he would be his usual self, making funny remarks and silly jokes all the while encouraging each of us to pursue our dreams and better ourselves. Most of all, he would have been so proud of mom, and happy to see her looking so healthy.

It's an odd thing, but right now, this very moment, I don't feel like I miss him, because I feel like he's right here next to me. On that happy note I'm heading off to bed early with the hopes that tomorrow is not too difficult on the family. Thanks to everyone who has been reading and supporting me. Friendship and family has certainly made the past few years worth living through.

Lots of love
Swapna

Chapter 1 - My Goose is Cooked

2006-03-03T13:40:00.000-06:00

On February 12, 2004 my father was diagnosed with cancer, he died less than three months later on May 09, 2004. This is his story told the only way I know how.

My father, Dr. Subbarao Padmanabh, was a hematologist. He had been practicing medicine for over forty years, and the majority of his patients were cancer victims. He was familiar with all forms of the disease and all treatments. He was not someone who ignored his own health or would let something get out of control because he couldn't be bothered to check into it. He just happened to be one of the many people who found out about their cancer at a very late stage. His decision not to undergo treatment started out as controversial but was justified very shortly after his diagnosis.

He believed that cancer treatment is often too aggressive and that the patient's quality of life was paramount. My father was a believer in many things, including miracles, he just didn't believe that taking away a person's final days of happiness and filling them with pain and discomfort was any guarantee that the miracle would occur. My belief is so similar. I believe that miracles do happen, and they happen in spite of anything we may or may not do. If a miracle was going to happen, it wouldn't have mattered what course of treatment he chose; it just would have happened.

There were physical signs that he was ill, signs you remember now, but never thought about in the moment. In November of 2003 my mother was leaving for her annual Florida vacation and my father was alone at home. He called me to say that during the night he had experienced some horrible pain in his groin area and couldn't move his leg. I think both he and I immediately thought of cancer. If his thoughts were even more similar to mine, then he would have been thinking prostate cancer, as that is where my mind immediately fled. He had experienced some prostrate problems a few years earlier, which is what sent me down this path.

He assured me he was okay and I believe I even asked if he could feel anything in the area and he said he couldn't. The rest of the month passed without incident. In December he went to join my mother in Florida. They had a wonderful time, and mom would later say she noticed he seemed more easily tired and pale, but she hadn't noticed enough of a difference to worry.

If you speak to any of my friends they will tell you that I had been talking about my dad being ill for a while. My friend in British Columbia tells me she remembers me saying I was worried about dad sometime before Christmas. I don't remember that conversation but she does. I don't remember even thinking he might be sick. It's amazing how powerful the mind can be. I can only believe I didn't want to know he was ill. Even before he told me he had that strange pain in his groin area, I had seen something more frightening but had pushed it out of my mind. In October I went to visit another friend's father who was in the hospital dying of cancer. Upon reaching his hospital room I looked in to see his daughter bending down over him as he lay in his hospital bed and his wife sitting in a chair next to the bed. As I looked in that room the vision changed, and for moment I saw myself leaning over my father. Me, not her, my dad, not her's. It scared me so much I immediately turned around and fled from the hospital. Days later I finally worked up the courage to go back with my friend's cousin. We reached the hospital just as my friend's father died. I went to the funeral, my mind filled with thoughts of my friend and how her family would deal with all of this. I thought of her mother being left alone, I thought of so many things that day, but not once did I think of my father.

Dad came home in early January, while mom stayed behind hoping to miss a bit more of our nasty Saskatchewan winters. When he returned home he was complaining of flu-like symptoms. The symptoms wouldn’t go and I began to worry. Nearing the end of January I knew something was wrong. Initially we had been urging my mother to stay in Florida longer as it was really cold in Saskatoon, but I picked up the phone and told her to come home. I told her dad was sick and needed her. As far as any of us knew, it was just a nasty flu, but something didn't feel right. Mom returned home at the end of January and immediately knew something more was going on. Dad, I'm, pretty sure, was positive that something was wrong. We urged him to see his doctor and he made an appointment. Looking back, I don't think he was ignoring things or putting them off, I think he realized what was wrong and was deciding whom he would see about it. It was only a few weeks since his arrival back home but he was now able to feel a mass forming. He told Mom his "goose was cooked."

His doctor's visit was scheduled for a Thursday, but on Tuesday he was running a clinic out of the emergency department of St. Paul's Hospital. It was a regular occurrence, and Dr. Michael Harington was running a surgical clinic at the same time. When the clinic was over, dad told Dr. Harington that he was worried and would Michael take a look at him. Dr. Harington examined him and some tests were performed, then dad came home. Soon after they called me to the house. We didn't speak much about it, just sat there waiting for the test results. At three o'clock the phone rang and dad talked quietly for a few minutes and then hung up. He had written down some notes but his handwriting was shaky. It was cancer, but there was some discrepancy to the type of cancer it might be.

I still have that piece of paper he wrote on. It's blue and had a lot of typing on it, I think it was about a seminar on Hodgkin's Disease. His handwriting is in black pen and not his usual decisive scrawl. I have it, but I can't look at it. It's the same with many of his medical reports. Most of them start, "I had the pleasure of seeing this unfortunate man on…" or something similar. They all have something nice to say about my father, they all say it was an honor or pleasure to meet with him, and they all imply he was one unlucky bugger.

It was 3'oclock when we received the official word that dad had cancer, and plans had already been made for that evening. Mom and Dad were going to go visit their best friends (Dr. and Mrs. Sisodia) for dinner and then all of them were going to the casino. The Sisodia's are like second parents to me, and so when mom and dad said they were still going and would give them the news, I was told to come along as well. I have one brother, Neeraj, and a sister, Sandhya. My brother and I both have our own homes in Saskatoon, while my sister lives with her husband in Regina, about a two and a half hour drive from us. My mom called my brother and asked him to meet us at Sisodia's and we told him dad's news.

Once we arrived at the Sisodia's I don't think any of us new how to handle the situation. Uncle had made martinis and there were some appetizers. We all sat down, and they knew something was wrong. Finally dad told them he had something to say, but he couldn't bring himself to say it. I remember my brother was standing behind him, with his hand on Dad's shoulder as though he was trying to pass dad his strength. Dad finally grabbed a cocktail napkin and wrote on it. He wrote, "I have cancer and I am dying." It sounds so very trite as I write it, but it brings back so much pain. My father was a strong man, I had never seen him unable to find the right words to say, and I had never seen him this overcome with emotion. My mother was sitting silently, my brother stoic and quiet, and Dr. Sisodia was the first to react. Sitting here I feel all their pain all over again, every bit of anguish was palpable in that room. For a few moments it was as though grief took on a life of its own and filled every corner and crevice, every breathable space in that home.

Then the spell was broken, the grief hanging in the air fell and washed over all of us in tiny droplets of tears, and everything became surreal. A few more words were spoken of cancer, and then we had dinner and then it was decided that we would still go to the casino. I have no idea what my brother did, or how he managed. The rest of us went to the casino and stayed for a short time. I don't know what we were trying to do or avoid or accomplish. We then went back to the Sisodia's, dropped them off and I was going home while my parents were going back to their house. We still hadn't told my sister as my mom and dad didn't want her to find out while she was at work, they wanted her at home with her husband when they spoke to her. It was decided that I would call her and tell her what happened and then mom and dad would call and talk to her. I have no idea why anyone thought I should tell her first, I think it was just because dad was having such a hard time vocalizing the situation. I got into my car and drove home. By the time I reached home all plans had gone out the window and my mother and father had already spoken to my sister by cell phone. I only live about five minutes from the Sisodia's but those five minutes felt like an hour, so I wasn't surprised.

So now we all knew. More importantly, we all knew that my father did not expect a reprieve from this illness, and that was enough for me. He knew more about cancer than any of us ever wished to, if he expected the worst, then I knew it was true. It was then, alone in my home, that I came to terms with the fact my father was going to die and that it probably wouldn't be long before he was gone. Prior to that moment I had visions of it being a 'curable' cancer, but sitting there alone, I knew I had very little time left with my dad.

Over the next few days there were many discussions about the cancer. It took on a life of its own. Mysterious and forbidding. Dad had a needle biopsy done and they were working on typing the type of cancer. For a little while there was talk that the cancer might be submucosal rather than an adenocarcinoma. My understanding of this was that we wanted it to be a mucosal type, as treatment that offered a much better prognosis. Even with all the talk of it, I knew it wasn't something that was going to go in our favor, and so did Dad. But I couldn't actually come out and say, "Oh forget it, there's nothing to be done!" But that was what was in my mind. It was determined it was an adenocarcinoma anyway.

I do not profess to understand my thinking at that time, I only know that I never did hold out hope that a miracle would occur or that a cure would be found. Recalling those thoughts I wonder how I could have been so callous, yet I don't regret thinking that way. I believe my acceptance was what gave me the strength to do whatever was needed to give my father his final wish. My only need was to fill our lives with whatever we could in whatever time was given to us. I know dad felt the same, but it's a fine line to walk. Rather funny when I think of it now. We didn't care what anyone thought, we only wanted what was best for my father and our family. However, when you are in the moment, every criticism, every question, every odd look makes you feel like you might be doing something wrong.

Quickly following the biopsy was a visit to the cancer clinic. Dad had worked part time at the cancer clinic for many years, and I often wonder how it felt for him to be going there as a patient rather than a physician. I never did ask him. His oncologist was Dr. Hader, a nice, warm, intelligent and understanding man. Not so understanding that he accepted my father not wanting to have treatment, but understanding none the less.

Dr. Hader felt it would be best if dad followed a very aggressive chemotherapy program and underwent radical surgery. Looking back on things, I feel a bit sorry for Dr. Hader. He walked into a room full of people ready to back my father one hundred percent. My father isn't like me though, he's much more diplomatic. He told Dr. Hader that he would listen to all of the options and come back in a week to discuss it further. In the meantime Dr. Hader was going to call Montreal to see if the surgery could be arranged. I was a bit exasperated as I knew there wasn't going to be any surgery, but I tried to keep my mouth shut. Finally, I couldn't take it, so I asked Dr. Hader what he would do if it were his father. The plan backfired in my face, as Dr. Hader said he would do anything and everything possible. At least I then knew that Dr. Hader believed that what he was proposing would help.

When we returned to the cancer clinic one week later, the option for surgery had been ruled out, as dad's cancer was too widespread. Looking at all the new test results, Dr. Hader changed his mind and told my father he was correct, it was too late for most treatment and that at best treatment would give dad another three to six months, but that was it. None of us felt that having treatment was worth it, and most importantly, my father didn't want the treatment.

Dad must have had the cancer for a good 5 to 7 years, and despite having had a colonoscopy, prostate surgery, bloodwork, etc, nothing had ever shown up in that time frame. The only thing I can liken his cancer to, is a type of tree fungus that slowly covers the entire tree, branch by branch, leaf by leaf. It appears to be doing no harm, but one day the tree just begins to wither and die. In the same way, the cancer didn't begin to affect any of my father's organs till February. Although we knew the cancer was an adenocarcinoma, we could only guess that it arose from the stomach lining or maybe appendix, but we will never know for sure. Once the tests were done, and the MRI's seen, there was really no point in further classifying it, as it wouldn't matter what type it was, the treatment options were all the same.

The week and a half following all of this was a period when I rarely saw my father. I would be at my parent's home, but he was down in his office working away. When people heard that my father's cancer was so advanced and that he must have had it for several years, they began to wonder if he had known about it for a long time and just hid it. That idea was so ridiculous it made me laugh. My father spent the first ten days after diagnosis in a frenzy getting all his affairs in order. He made piles upon piles of papers. All neatly arranged with little sticky notes explaining the details of each. He met with bankers, investors, looked at the will again, and then began the process of shutting down his remaining clinical practices. If my father had known he had cancer, all those things would already have been in place.

My sister arrived in that first week, and my father immediately conscripted her to be his assistant. I would arrive at the house and feel so jealous. I couldn't understand why he didn't want my help. I'm not sure what my brother thought of things, he was there every day too, and I don't remember dad giving him any special tasks either, at least not in those initial days.

Shortly thereafter, dad decided most of his paperwork was done and he began shutting down his work at the Cancer Clinic, Blood Services and the hospitals. Colleagues organized goodbye parties and presentations but I never attended them. By then we had quite a few relatives in the house and I think my mom thought it would be rude if we all went to each gathering, so she just chose to take a few people. The out of town relatives went, as did my sister and her husband. They took so many pictures and every time I would look at them I would feel cheated again. I wasn't in any of them, there were no pictures of dad and I. Such a stupid way to feel at such a time, but I had no control over those feelings. I tried to get my own work under control, preparing to be absent for a period of time and trying to help mom in any way I could.

Then there came the house visits. Dad decided the best way to say goodbye to friends was to have three or four gatherings and try and invite his closest friends. He really believed he wouldn't last more than one or two months, so he was rushing things. People came and went, Dad stayed bright, joking with people, laughing, being his usual self, but it was just a bit off...

Finally he decided he had enough, it was time to stop visitors. That was about 4 weeks after his diagnosis. By then he was beginning to feel weaker and was losing his appetite. Things became a little quieter, except for the phone, until we set up a system. We would call two people each day and give them an update, then they would call everyone else, our own little network. It gave us the relief we needed as we just couldn't handle the phone ringing non-stop. The visitors were much easier to handle as we just stuck a note on the door saying sorry, we are not up to visitors today.

About the time he started feeling weak, he also starting having pain. So it was time to start with a more aggressive medical approach. It was at this juncture when Dad finally called upon me. He asked me to care for him, to be his nurse.

At that time I never knew what he was really asking of me, or even if I was capable of doing it. I only knew that my Dad finally asked something of me, and I would do whatever was in my power to carry out his wishes. I was such an idiot and so jealous! I remember saying to him, "Dad, you had a father-daughter talk with Sani, and a father-son talk with Nene (Sani and Nene are pets names for my sister and brother), don't you want to have one with me?" He kind of laughed and said, "No I don't think so, we talk all the time." At the time I didn't realize how important those words would be to me.

This Is Harder Than I Thought It Would Be!

2006-02-09T22:03:00.000-06:00

***Anyone new to this site and wanting to read the bare bones draft of the book can go to my other site Dying With Grace*****

Well, turning a post into a chapter is proving to be a bit taxing. It's definitely going to take me more than a day to put something out here for you to read. I thought I could just post parts of the chapter, but I keep rearranging the order so that's not working either.

I think what I will do is post each chapter as I complete it. Instead of making you all keep checking back here, you can visit my silly home page Saskawhere to read my daily foolishness, and if I have a chapter finished, I'll announce it there. If anyone has a better idea, feel free to let me know!

Hugs,
Swapna
PS I'm out of town till Sunday, so no posts till then on either site

Forward

2006-02-08T19:30:00.000-06:00

During my father's illness I became painfully aware that although I was almost 40, I had never really thought carefully about losing a parent. I had thought about having one parent live with me if the other died, I had thought about helping out if one of them had trouble walking but it never occurred to me that I might help care for a parent who wanted to die at home. I also never thought of how death would affect me. Every thought I had on these subjects were just abstracts. As though 'some day' they might happen, but why worry for 'some day' was far off.

My father's death and illness made me realize how quiet society is about grieving, death, and caring for ill family members. We love to hear about life and joy. There are countless books on bringing up children, going through pregnancy, even caring for children with disabilities, or undergoing cancer treatments, but very rarely do I read or hear about death and dying. Death is something most would rather not think about, but it is something everyone will experience. Without being morbid, I now believe it is worthwhile to prepare yourself to face illness and death if you have aging parents.

At some point or another, almost everyone will have to deal with illness and the death of a loved one. Caring for a loved one at home is becoming more of a reality every day. This book was written with two goals. The first is to show how we cared for my father, while giving examples of easing common problems that may arise while undertaking home care. The other is to allow you, the reader, to meet my father even though he doesn't walk among us anymore.

Statistics show that care for the elderly increases as baby boomers reach retirement, illness from diseases such as cancer grow as life expectancy increases, and one in four Canadians will suffer from some form of cancer in their lifetime. In 2004 the Canadian Cancer Statistics estimated 145,500 new cases of cancer and 68,300 deaths from cancer occurred in Canada. My father became one of those statistics on May 9, 2004.

My father was more than a statistic. He was a physician, poet, artist, husband, humanitarian, teacher, advisor and father. He had compassion, morality, ethics, education and love as his compass throughout his life.

Source: Canadian Cancer Statistics 2004

(Note: I don't know how to properly format footnotes and references in this blog, so please bear with me. Also, if you have the time, please comment on each post if you see errors, ommissions, or have ideas for making each section better.
Thanks!
Swapna)

The End and A Beginning

2006-02-07T20:35:00.000-06:00

Well, that brings me to the end of Mom's treatment. She's in Florida at the moment, escaping the Saskatchewan winter, and enjoying herself immensely. I feel really positive about Mom's future. She seems to be learning to do more than just survive without Dad, and even though she misses all three of us kids, it's good that she's out in Florida and away from us for a bit.

I spoke to her earlier this evening and she was so happy. She said this is the best she's felt in the past five years. She said her hot flashes have subsided and the leg cramps are almost gone. The last time she was in Florida with Dad, her knees were bothering her so much that she often had to use a wheelchair. This time she's taking part in a variety show and she's tap dancing...Okay now I'm even shocked, my mom is a wonderful Indian dancer, but I can't imagine her tap dancing!

Her original plan was to come back to Saskatoon mid March, but tonight she said she will probably stay till April 15th. I just can't begin to describe how happy it makes me feel to hear her sounding so healthy and happy. We always talk about Dad, but her voice has a different sound to it. Every now and then the sorrow creeps back in, but on the whole it's like she feels he is there with her anyway.

Now that I've finished my Mama's tale of treatment, I shall end her story with the knowledge that good things lie ahead for her.

As for the blog, I think I will begin to rewrite the original posts into real book form. Anyone interested can check back now and then to see how I'm progressing and to comment. I will try to post every day, as that pushes me to see this through to the end.

Oh and one last little moment to make you smile. One of my regular visitors to this site (Anne), emailed me this weekend to say she is training for a 5km fun run in aid of Cancer Research UK. It's an annual event called Race for life and each runner wears a label on their back that says,"I Race for Life for..." This year Anne will be racing for my mom! When I told my mother she was so thrilled and said it was an extremely sweet and thoughtful gesture. So thank you Anne, and good luck with the training! You will have to keep us posted on your blog, so we can see how you are progressing.

Hugs All,
Swapna

The Joys of Tamoxifen

2006-02-07T00:16:00.000-06:00

First off, I finally found a good description of how Tamoxifen works in respect to ER+ patients, so I'll just paste it here:

The way in which Tamoxifen works is quite complicated and not yet fully understood, but its main function is as an anti-oestrogen drug.

Most breast cancers need supplies of the female hormone oestrogen to grow. Cancer cells have proteins called receptors on their surface that the sex hormones attach to. Cancers with oestrogen-receptors on the surface of their cells are called Âoestrogen-receptor-positiveÂ (ER-positive) anTamoxifenen is most effective against these cancers.

Under normal circumstances, when oestrogen comes into contact with the receptors, it fits into them and activates the cancer cells to divide so that the tumour grows.

Tamoxifen imitates the action of oestrogen and fits into the receptor but does not activate the cells to divide. ThTamoxifenen stays in place and stops oestrogen from reaching the cancer cells so that they either grow more slowly or stop growing altogether.

Tamoxifen can greatly reduce the chance of oestrogen-receptor-positive cancers coming back after surgery. It can also be used to shrink large tumours down before surgery so that they can be removed.
CancerBACUP

Okay, so now we get to the fun of Tamoxifen. Of course, this is just how Mom reacted to it, and hopefully most won't have as many problems.

The first few days of Tamoxifen brought on some dizziness annauseaau, but that soon cleared. What didn't clear were the hot flashes. Mom continues to be plagued by them, and although the doctor prescribed Effexor (an antanxielyticic) that happens to help counter hot flashes, Mom found the Effexor too hard to take. In all fairness, I think you need to take Effexor for about 2 weeks to get acclimatized to it, but Mom just about passed out the first night and couldn't even get to the bathroom on her own. After that she refused to try it anymore. She has tried some herbal remedies that were also okayed by her doctor, and has found some success with them. I believe the two she still takes are Evening Primrose and Black Cohosh.

Other than the hot flashes, which aren't minor by any stretch of the imagination, the next problem was leg cramps. Avoiding any caffeine, taking a warm bath before bed, stretching your legs before bed, and drinking a glass of tonic water helps, but she still goes through periods where the leg cramps make it very difficult for her to sleep.

Then there's the weight gain. My mother has always been very weight conscious, and the weight gain really bothers her, but she's resigned herself to that as well. They do say that the weight comes off once the drug is stopped, so I think she's just waiting for that day. Unfortunately, one of the problems with weight gain, is that the area under her arm has become a little more fleshy, and that happens to be the area that is very tender for her. Because she has weight gain around her midsection, back and under the arms, it is even more difficult for her to find bras that fit and feel comfortable.

She has also had a slight blurring of vision, but all tests have come back negative for cataracts, which is a known side effect of Tamoxifen. Another well documented side effect is uterine cancer, so anyone on Tamoxifen has to have regular pelvic examinations. Mom expresses worries about clots (another well documented side effect) quite often, as she often has pain in her legs, but it seems to be due to something other than the Tamoxifen.

There are other side effects that everyone on Tamoxifen is warned about, but so far Mom hasn't had to deal with them. Although Mom's side effects seem small in number, they do plague her on a regular basis. I think any woman who has experienced severe hot flashes, knows that the idea of continuing to cope with them for three to five years can be a very depressing thought.

And that brings us to the end of our Tamoxifen post!
Swapna

Pain After Surgery, Radiation and Diet

2006-02-03T23:38:00.000-06:00

Mom's biggest problem after surgery was the pain in her arm and under her armpit. Although she regained full extension of her arm and the swelling went away, she still has a lot of pain in the armpit area and lower. Even wearing a bra causes her difficulty some days. I'm hoping that in time, the pain will completely disappear, but for now she seems able to cope with it.

Her next step was to start radiation treatment. The first few sessions went by with little or no side effects other than a slight redness and tenderness in the breast area. However, after those first few treatments the tenderness became much more pronounced as did the redness. In time it began to look as though she was burned on her breast. To alleviate some of her pain, my sister would put aloe vera gel on the area, and that seemed to help to a certain degree.

The worst side effect of the radiation was that Mom began to feel very tired. Not having the same level of energy started to factor in on Mom's emotional state. She hated not being able to do the things she normally did in a day. As I mentioned before, my sister started making fresh juice for my Mom every day. The juice really seemed to help, and slowly Mom's energy started to come back, even while she was still getting treatment. Mom's juices consisted mainly of carrots, beets, celery and apples (all organic).

In fact, we switched Mom to a full organic diet because of several factors. Soy has been recently thought to bind to estrogen receptor sites in a similar way that many of the breast cancer drugs do. Although there have not been conclusive studies to show benefits on women already taking Tamoxifen, it has shown benefits in those not taking Tamoxifen. There has also been much discussion about red meat and the possibility of it containing growth hormones/steroids that include estrogen. As this is a big no-no for breast cancer patients, they are advised to try and eliminate red meat or switch to organic meats.

As for vegetables, the biggest problem is pesticides and its possible connection to cancer. Making the switch was fairly easy, as most grocery stores now have a decent organic section. In addition, we have several good health food stores here, with full organic produce and meat sections. The only real difference was in price...Oh and with milk. For whatever reason, organic milk smells like poop! Seriously, it's gross. None of us can stomach it! My sister and I love soy milk, so we tried to convince Mom to switch over, but she wasn't biting. She likes her milk and yogurt too much. So other than yogurt and milk, we succeeded in becoming organic food buyers.

Sitting here and writing this, I feel as though Mom's treatment was a breeze. But when we were going through it, it seemed so much more difficult. I know that I had a lot of emotional guilt throughout Mom's treatment. I wasn't there every day, I refused to sleep at her house, and other than making sure I talked to her on the phone every day, I really didn't want to go anywhere but home after work. My sister was staying with Mom, so she was there a lot, and my brother would go visit Mom every day, and still does. So they were doing their duty, but I was having a hard time doing mine.

I think I was afraid I would become a substitute for Dad. I know no one can ever replace Dad, so I don't mean in that sense, I just mean that I was afraid that once my sister went home, Mom would rely on me when she was lonely, which happened to be all the time. Mom had never lived on her own, she was used to having someone around all the time, whereas I have lived on my own for a long time. I was afraid that I would lose my life, and become her companion. I think that I was probably not giving Mom enough credit, as she knows how much I value my privacy, but she also knows that I'm lonely a lot of the time too. It sounds silly, but I think my greatest fear was that we would become too dependent upon one another and I would never have a chance at finding a husband and having my own family.

I'm over that fear now, and I'm glad I didn't give in to my guilt and run over to Mom's every time she was feeling down, I don't think it would have been good for either of us. Mom still hasn't had any long periods of being alone as she often traveling or having a relative visit, but I think she is beginning to be more used to the idea of being alone.

My sister was fantastic, but even she said Mom is high maintenance! I had to laugh at that one, as my sister is exceptionally patient. Outside of those little problems, Mom's radiation treatment went very well. Later she did have some problems with hardening of the breast tissues and discoloration but the majority of side effects came when she started the Tamoxifen.

So on to Tamoxifen next post!
Swapna

Chemo or No Chemo?

2006-02-02T20:41:00.000-06:00

Once Mom's lumpectomy was finished, she had to make a decision about what treatment to follow. If we had just done what the doctors told us to do, then mom would have moved on to chemotherapy, followed by radiation, followed by five years of a tamoxifen/aromatase combination.

Of course, our family kept up the tradition by questioning everything. I can not stress how important it is for patients and their families to question why a specific treatment is outlined for them, and what are the risks and benefits if they change any portion of that treatment.

We had just been through this process before so we knew what to ask, but if we hadn't, I'm not convinced that we would have really understood the information we were being given. This is because of the following information:

First of all, when dealing with cancer, one must understand that the word cure, does not always mean 'cure' as we know it. For instance, when dealing with ovarian cancer, the term 'cure' means living cancer-free for five years after diagnosis and initial treatment and the cure rate is only 50%. However, when dealing with breast cancer the cure rate is 95%-98% for five years (some are raising this to 8 years now, but I can't find the data to support it). My point is, you need to know what "cure" means when you are speaking to your physician

Next, you will almost always be told what the proper course of treatment is. This is standard procedure as set out by Health Canada and your Cancer Clinic here in Canada. However, you will rarely be told what options you have if you don't opt for the recommended treatment. That information will generally only be given if YOU ask about it.

Then you will be told that if you take the standard treatment your chance for 'cure' is XX% depending on your stage and the type of treatment being offered. What you won't be told is what your chance for 'cure' is if you only take part of the treatment. Again YOU must ask these questions.

***I believe that it is not recommended to start chemotherapy and then stop partway through because it takes the full course treatment to reach the desired effect. I'm not positive about this, but I do seem to recall our doctor telling us that. So, in other words, if you start chemo and do two rounds of it and then decide to quit, chances of gaining any benefit from those two rounds are not that high.***

Another question that you may want to ask is "What are the general statistics in other countries concerning the use of chemotherapy in this type of situation?" In the case of breast cancer, you will find that North America leads the way in most aggressively treating breast cancer. But it is of significance to note they do not have the highest 'cure' rates.

So those are a few of the questions one needs to ask when faced with cancer.

Yesterday I forgot to mention on of the other tests that is performed called the HER 2/neu test. After surgery/lumpectomy the tumor is checked by the pathologist for the presence of HER-2/neu overexpression. HER-2/neu is a receptor that some breast cancers express. If the cancer expresses it, you usually have a higher chance of having your tumor recur after surgery. Herceptin (or Trastuzumab) is a substance that blocks this receptor and helps stop the breast cancer from growing. When Mom was first diagnosed with cancer, everyone and their dog was calling to tell us she should be put on Herceptin, the wonder drug! But, in mom's case, she was not her-2/neu positive so there was no need for Herceptin.

Okay back to deciding on treatment. In my mother's case it turned out that once all the math was completed, the difference between her following the gold standard practice (chemo, radiation then drug therapy for five years) versus radiation and drug therapy for five years, was a mere 3% decrease in 'cure' rate. So if you are sitting in the cancer clinic, watching patients undergoing chemotherapy, then listening to your doctor explain the regimen, and finally you are told,"If she undergoes chemotherapy, radiation and hormone drugs, her chance of survival for five years or more is 67%, however, if she has only radiation and hormone/drug treatment her chance of survival for five years or more is 64%" you might feel just as we did. Chemotherapy just wasn't worth it. Mom was already fragile after Dad's death and my hysterectomy, she didn't want chemotherapy, and we weren't sure she would be able to handle it. So the decision was made. Mom would take the radiation treatments and follow up with drug therapy.

Next we were faced with the choice of drug/hormone therapy. As I explained before, it's not hormone based medications, it just affects estrogen by either binding to the receptor site, or inhibiting its production. I think I may have been a bit off in my explanation of estrogen receptors, but the basic principle was correct, the medication binds to the breast cell, rather than estrogen. There is a new type of drug on the market that has been hyped quite a bit in the last year or so. It is an aromatase drug, this drug inhibits the production of estrogen. During my mother's illness I was able to attend a lecture on this drug, so I had a bit more information than would otherwise have been available to me. In my mother's case, the difference between using aromatase inhibitors or tamoxifen is minimal. Aromatase has its benefits, but it has not been in use for a long time, while tamoxifen has been used for many years. So the long term affects of aromatase inhibitors is not yet known at this time. However, it is clear that aromatase inhibitors can cause bone loss, while tamoxifen increases bone density, aromatase decreases the chance of ovarian or uterine cancer while tamoxifen increases it. In the end it was decided that Mom would do three years of tamoxifen, then two years of aromatase inhibitors. Hopefully more will be known about aromatase inhibitors three years from now.

Once Mom's treatment was decided upon, it was time to get ready for the actual treatment. Mom was very scared, but she had all three of us kids by her side. My sister took a leave of absence from her work, and her husband, being the understanding man he is, reluctantly let her come to be with all of us. His mother had health problems of her own, so he stayed in Regina to help with his mom's care.

Mom's radiation treatment was going to take 6 weeks. During that time my sister was going to be living with her. I was back at work and doing well. I needed my time back in my house, so I was very happy my sister was going to be here. Also, my mom and I have a very different relationship from my sister and my mom. To demonstrate this, let me give you a typical example of a morning with my mom.

Sandhya (my sister) and Mom
- Wake up, do some yoga together. Sandhya makes fresh carrot juice for mom. Mom makes coffee for Sandhya, they sit together in bed, reading the paper sipping their appropriate drinks. Next they make breakfast together and enjoy the view of the Saskatchewan river while having scrambled eggs. Mom needs help filing things, my sister gets her organized.

Swapna and Mom
- Wake up, Swapna tells mom to stay in bed and read while she makes carrot juice for her. Swapna brings mom the carrot juice, mom says she doesn't want it. Swapna attempts to cajole mom to drink it, and finally resorts to threatening her. Mom drinks half the juice then leaves the rest on the side table. Swapna asks mom if she would like scrambled eggs, mom says yes. Swapna is making eggs, she notices Mom trying to make the bed with her bad arm, Swapna leaves the eggs unattended to go help Mom. Mom says she doesn't need help. She obviously needs help. The eggs start to burn, Mom yells at Swapna, Swapna yells back. They both calm down. Swapna starts fresh eggs while Mom makes coffee. Mom gives coffee to Swapna, Swapna makes a face and says,"GEEZ after 40 years I think you would remember I can't drink coffee!" Mom is irritated by the face Swapna made. They both gobble their eggs down and rush to get out of each other's way.

It's like having two moms in the house, or two chefs in the kitchen or whatever. Mom and I just get on each other's nerves, but with my sister, it's all peace and nirvana.

Tomorrow I'll talk about the effects of radiation on Mom, and the emotional ups and downs we all started to go through.

-Swapna

2006-02-01T22:34:00.000-06:00

I'm too tired and nobody left a comment, so I'll be back tomorrow.
Sleep well everybody!
Swapna

Muddling Our Way Through The Info

2006-01-31T22:41:00.000-06:00

Once Mom was diagnosed, it became a race to find out what type of cancer she had, was it aggressive, how large was the lump, where her lymph nodes involved, how long before they could stage it, would it be beneficial for her to try the new drugs that were currently hitting the market. It was a like being immersed in a brand new world, and one that none of us liked very much.

Although Mom was against chemotherapy, mainly because of what she had heard Dad say through the years, and because he refused it himself, she agreed to weigh all the information and then make a decision. I don't know for sure, but I think on some level Mom must have been thinking that this was God's way, or Dad's way of bringing her and Dad together again. I really think when she first heard the diagnosis, she was ready to let go and give in, however fleeting the thought may have been.

I wish I had some notes to refer to as what happened to Mom is not as clear in my mind as it was when Dad was ill. I think on many levels I was burned out, and I just felt overwhelmed. I will also admit that on a deeper level I felt a bit cheated. I had wanted to talk to my Mom and my sister about not being able to have kids, and I had wanted to wait till after the holidays as I didn't want to bring anyone down. But, right after New Year's we found out about Mom, and so I never brought it up. I know it was in the back of everyone's mind, but suddenly we had bigger problems.

The first thing that happened after mom was diagnosed, was she had an appointment with a surgeon. I don't know why we were so dumb, we knew Dr. Harington was a surgeon, what we didn't know what that breast cancer had been one of his specialties. Had we known it, we would have requested him for sure. As it was, Mom had a very nice physician and Dr. Avinashi, her family physician, went the extra mile for us. He is like family to us, and his care was unsurpassed during Mom's most difficult times. We did end up calling Dr. Harington, but he was out of town at the time, and by the time he returned Mom had already had her lumpectomy. But I'm getting ahead of myself.

Once the mammogram was confirmed, she went for a biopsy. The biopsy confirmed cancerous cells were present and there were both ductal and lobular involvement. I'm a bit fuzzy on the ductal and lobular section, but I believe the worry is with ductal. If the ductal cells of the breast are involved, there is a greater risk for a more aggressive and fast moving type of cancer. Then further classification is done, and if a woman is classified as Estrogen Receptor Negative...It's bad news. Treatment in breast cancer is often dependent on binding the medication to estrogen receptor sites. If these sites are negative, then the medication can not bind to those receptor sites. At least this is my understanding of it. At the time of the biopsy, we only knew that there were cancerous cells present.

Once the biopsy was complete a date was set for her lumpectomy (BCS Breast Conserving Surgery) and removal of some lymph nodes so the cancer could be staged. There are several factors to staging breast cancer, and I'm just giving a layperson's perspective, so please don't rely on this document for anything more than a document showing how we dealt with her illness.

We were told that radical mastectomies were not performed as regularly as before, and lumpectomies were preferred. In any event, the plan was to remove the lump, do a frozen section on surrounding tissues, and the sampling of lymph nodes and if they felt they had it all, close her up, if they felt the cancer had spread further, they would remove more.

Once the date was set we were sent to the Cancer Clinic once again. This time Dr. Mirchandani was to handle Mom's case. Dr. Mirchandani turned out to be not only a good friend in later times, but also a woman who shared Dad's sentiments. She hadn't known Dad well, as she was fairly new to the Cancer Clinic and Dad was working there very little by the time she arrived.

Dr. Mirchandani explained the process to us, as well as staging of breast cancer and the treatments available, but she also said we would have to visit her again at a later date once the surgery was complete.

On the day of Mom's surgery, I stayed at the hospital while the rest of the family went home. We thought it would take a lot longer than it did. Turns out the surgery went rather routinely and Mom was getting ready to be moved to recovery by the time I had finished wandering the gift shop. In fact, the moment I stepped into the operating waiting room, her doctor came out to speak to me. He told me she had done well and they had removed a fairly large section of her breast and there was some lymph node involvement, but they would have a better picture after all the histology was complete.

Mom's breast cancer was classified as Stage III with lymph node involvement. Here is a brief description of breast cancer staging as I remember it.

*** The lymph nodes referred to here are found in the armpit on the same side as the affected breast****

Stage I - The tumor or lump measures less than 2cm and no lymph nodes are involved or other organs are involved.

Stage II - The tumor or lump measures 2-5cm and there may or may not be some lymph node involvement and no other area of the body is involved

Stage IIIA - The tumor or lump measures less than 5 cm and there is lymph node involvement and these lymph nodes are clump together or to surrounding walls.

Stage IIIB - The tumor or lump measures at least 5cm and there is lymph node involvement, but no other area of the body is affected.

Stage IV - The tumor or lump measures any size but the cancer has metastasized to other sites in the body. For instance lymph nodes in the collar bone area may be affected, or the lungs may be affected.

If I remember correctly Mom's tumor was 5.4 cm and there were 4 out of 14 lymph nodes that were cancerous. The guidelines in Canada for Stage III breast cancer basically recommend lumpectomy/mastectomy, chemotherapy, radiation, and follow up with hormone treatments such as Tamoxifen. (In this case, when the words hormone treatment are used, they don't mean hormone replacements, they refer to hormone binding sites)

Of course, right after the mammogram and biopsy, we had no clue as to what Stage Mom's breast cancer was at, and we were being inundated with emails, phone calls, and faxes from friends sending us the latest news on breast cancer treatment. Because there are so many differing aspects of breast cancer, many of the newer treatments or drugs were not applicable to Mom's type of cancer, but we didn't know that at the time, so my sister and I struggled to absorb all the information we could.

During that period, my sister would come to Saskatoon as often as she could, but she wasn't able to always be there. However, she quickly realized that I would not be able to nurse Mom like I had Dad. She made the decision to take time off from work and come and be with Mom no matter what decision was made.

Following the lumpectomy, Mom had a lot of pain and it was very difficult for her to move her arm up and down. When lymph nodes are removed a nerve is cut, and although nerves grow back it can take quite a bit of time. Lymph nodes in the armpit also drain fluid from the breast, arm and back, they act as filters cleaning foreign materials such as bacteria, so they are important to the body. Fortunately, Mom just had a sampling done, and not a complete removal of all nodes. I think the lymph removal caused Mom more pain than the actual lumpectomy.

Once all of this was complete, it was time to find out the precise staging of Mom's cancer and look at her treatment options. Because I've already smacked you in the face with a lot of little details, I'll leave treatment options for another post. As it is my head is reeling trying to remember all these little facts. Please let me know (in comments) if this type of information is overload, or you like hearing these types of details. Oh, and feel free to correct me if you spot any mistakes!

-Swapna

The Devastation Continues as Mom's Story Begins

2006-01-30T21:10:00.000-06:00

The summer and fall of 2004 passed so quickly for me. My illness continued to worsen, and at the same time, all of use were worried about Mom. My Aunt from Spain (Gopi) arrived to spend a month with Mom and that was a life saver for all of us. Gopi gets things done, she won't let you mope around, she's energetic, has a positive attitude and makes everyone laugh. She came in and took Mom under her wing. The day she had to go back to Spain, I think all of us shed a few tears. But for the time she was here, everyone had a chance to relax a bit.

Summer turned to fall, and soon the snow was expected. We had a huge art showing of Dad's works, unfortunately, I had to leave early as I wasn't feeling well. I was bounced around from doctor to doctor, then finally, sent to Mark Sheridan. He advised me of my options basically, I had tried most of them, and my hopes for having children were about to be dashed. A hysterectomy was what he suggested. I tried everything else first, but nothing was stopping the bleeding or the pain. I gave in at the beginning of December and called his office to say I would have the surgery.

Less than 2 weeks later they called me in. The day of my surgery also happened to be the same day I had booked Mom's mammogram. She had missed her appointment the January before as she was away in Florida, and then Dad's illness hit. I wasn't going to let her miss this appointment too. I made her leave me at the hospital and go for her mammogram. She was back before my surgery.

After surgery, I was in the hospital for about 10 days, then headed to mom's place just before Christmas. Christmas and New Years were very quiet days for us. We had a few people stop in, but on the whole, no one felt like celebrating, and I was still recovering. On the second of January, the mail arrived, in it were Mom's mammogram results. They said that there was a shadow, and they would like her to report to another facility for more in-depth tests.

I wasn't supposed to be driving yet, so mom went on her own. She was having the test done at the Associated Radiologists on Wall Street. I had worked there for several summers as a teenager, and knew a lot of the staff. Dr. Pylypchuk's sister, Dr. Maxine Beck, was the radiologist on call when Mom went in. Maxine looked at the films then called Mom in. Mom said there were tears in her eyes, and she started crying as she told Mom that she did in fact have breast cancer.

Mom called me, and to be honest, I don't remember what happened. I know I was thinking she can't drive home, but I couldn't drive. I think Mom did drive home in the end, but it's all a blur to me. The only thing I remember is Mom saying that there is no way she would have chemotherapy. She said Dad didn't have it, so she wouldn't. I told her not to decide yet, that chemotherapy could be beneficial in her case, and we would need more details. I think Mom called my brother and sister, but maybe I did. Like I said, I don't remember much.

From that moment on, every waking moment of mine was consumed with concern for my Mother.

-Swapna

The Days After

2006-01-29T23:40:00.000-06:00

After Dad died, the first little while was unbelievably overwhelming for all of us. We went to Norfolk, Virginia for a week just to get away from everything. My aunt and uncle in Washington have a beautiful penthouse condo right on the beach, just a few hundred feet to the waters edge. It was beautiful, it was horrible, it was weird. It felt so odd to be there without Dad, and to know Dad couldn't join us. I also found it very difficult to enjoy myself. Every time I would think how beautiful things looked, or how nice it was to be in the sun, I would remember that Dad had just died, and then would feel guilty that I had a nice thought. It took me a while to get over that feeling. I know Dad wouldn't want us to feel guilty for appreciating things, but at the time, it just felt wrong to feel good about anything.

I can only imagine how difficult it must have been for my mother. She would not only have had to contend with similar feelings to my own, but also those that she was brought up with. If mom were to follow tradition, she should have been wearing a simple white sari, no jewelry, stayed in her house in Saskatoon for 14 days, and probably was expected to beat her hands against her breast as she wailed in sorrow. Thankfully times have changed, not only that, my father took the time to tell her he didn't want her to stop being herself. Both my parents were, and my mother still is, very attractive and young looking. My mother always dresses in the latest fashions, has her hair and makeup done up. She's just really well put together. To imagine her looking otherwise would be robbing her of part of what makes her so unique.

My father did a lot of things before he died. Not just getting paperwork in order, but he even made sure mom had a condo to move into. They had been looking at condominiums as Dad had planned on completely retiring in March, so they had already seen quite a few. However, their good friends had owned a condo, that they both really liked. Those friends had both passed away, and the condo was just sitting there with all their belongings in it. Their kids were unable to bring themselves to empty it. It was all kind of sad, and I think it made Mom and Dad think twice about collecting items, as they saw what happened to all the treasured pieces their friends had collected. But as usual, I digress. My point was, Dad decided their condominium would be perfect for Mom. I know it sounds a bit gruesome, but honestly, you would never think it's the same place. I went there packed up everything and shipped it off to the daughter of mom and dad's friends, so the condo was ready for mom to move into when the time came.

Before we left for Norfolk, Mom put her house up for sale. It is a beautiful house, but would have been much too large for Mom to live in on her own. When we were in Norfolk we did get an offer on the house, but we all thought mom could do better, so she didn't accept it. After returning to Saskatoon, mom's knee started to get worse. She had been having problems for some time, and there was not much more that could be done, so surgery was the only option. The day she went into the hospital, another offer came on the house. This time it was an excellent one. Unfortunately, they wanted a fast closing, 12 days from the day the offer was accepted! So while mom was in the hospital, we started preparing for her move.

Mom's hospital visit was something else. She had a very odd reaction to the pain medication and became a lunatic. She would whisper to me that the nurse was trying to starve her, or that they refused to let her shower (she was in her new pajamas with soaking wet hair, smelling like soap...You do the math!) Aside from her weird behavior she also had two episodes of what looked like seizures to me. After that they switched her medication and all was well.

Alas, Mom differs from Dad as a patient. Dad never complained about anything. Mom, complained about everything. She hates being sick, and she makes sure everyone knows it. She said she was in so much pain and couldn't get out of bed, and couldn't do her leg exercises, and on and on. But when the doctor said the only way she was getting out of there was to climb a flight of stairs, she bounded out of bed and ran up and down those stairs lickety split! She cracks me up :)

She was back home soon after the surgery, and supervising the move. About that time, my illness started getting worse, and there were days when I was no use at all. Fortunately mom has wonderful friends and my sister came out to help as well. Soon mom was moved out of her house and into the condo. She began renovations on it, and it's a work of art now.

About this time, we finally decided we would take care of Dad's ashes. He had wanted us to scatter his ashes in the Saskatchewan River, but because of the time of year, and then Mom's knee, were unable to do it till later in the summer. We used to live on an acreage that had a beautiful path winding down to the river and all of us had hoped we could go back there to scatter his ashes. We all have so many wonderful memories about that place. One of our favorite stories was of Dad standing on the balcony waving at some people out on the river in a canoe. When mom asked him who he was waving to, he said, "Oh just some people. They have a canoe just like ours." Turns out it was our canoe, and dad happily waved to the thieves who stole it!

Mom had kept in touch with the people who bought the acreage from us, and after they moved, she even became acquainted with the new owners. In the end we decided that we wouldn't bother them, and would instead ask one of our old neighbors in the area, if we could use their path to the river. While we were discussing this my sister mentioned that she had one regret about the acreage, she wished she had been able to take one last swim in the swimming pool. Mom then picked up the phone to call our old neighbor (Linda). She spoke to Linda for a short time, then got off the phone with a smile on her face. She said that Linda told her the new owners of our old home were away on vacation and had given her the keys to the house and pool, and told Linda to make use of it. Linda said we should take the ashes down to the river and then spend the day around the pool. So my sister was going to get her wish after all!

The next day my brother, sister, mother, family dog and I gathered together and headed to the acreage. We made our way down to the river (no easy feat since Mom's leg was not fully healed) and then looked for a spot to scatter the ashes. In the twentyplus years my mother lived on the acreage, she had never waded into the river because she always felt the water was too cold. The day we went out there, it was sunny and fairly warm, but not a hot day. However, the spot we found had warm, almost hot, water. Don't ask me how...If you want to think romantically, you will believe that dad somehow made the water warm so mom could go in. On the other hand, if you want to think scientifically then there was probably some sort of fungi growing in that area making the water so warm. Whatever it was, mom was able to wade right in.

We set out a clay pot filled with his ashes and watched it slowly float away and under the water. After that we made our way back up and then took a swim. We reminisced about Dad and his funny front crawl, he always ended up swimming on a diagonal and crashing into the side of the pool or someone else. The day seemed so right to me, as if everything had fallen into place.

On that happy thought, I think I will end this post, and return tomorrow. Sweet dreams everyone.
-Swapna

Back Tomorrow

2006-01-28T22:32:00.000-06:00

Thanks to everyone who emailed or left comments. I will continue this blog and tell you a little bit about what happened after Dad died, and then move on to Mom's diagnosis.

On another blog, I will start rewriting each post from here into an actual chapter for the book. As each chapter is completed, I'll post a link here so anyone wanting to read and/or comment can do so.

I'd write tonight, but I'm baking...and I suck at baking, so no multitasking for me! But I shall return tomorrow.

-Swapna

What Now?

2006-01-28T00:05:00.000-06:00

I'm at the end of my story of Dad's illness. Many other difficulties have befallen my family since Dad's passing, most notably Mom's diagnosis and treatment for breast cancer.

I'm at a bit of a loss as to what I should do with this blog now. I have a number of options and was hoping that those of you following this blog would help me out.

The options I've come up with so far are:
1) Continue the blog with the story of my mother and her illness up till today
2) Begin rewrites of each of the posts in actual book form instead of my regular ramblings, and post portions of each chapter for review, criticism, etc. I'm considering re-ordering some of the material and adding my father's artwork and poetry as well as quotes from some of his patients.
3) Close this blog
4) Close the blog and link to a new blog on another subject
5) Have all of you give me some ideas :)

Thanks to everyone who has taken the time to read the blog, and to those who have commented and been able to share some of their thoughts and feelings as well.
-Swapna

Why I Believe My Father Still Watches Over Me

2006-01-26T21:03:00.000-06:00

When I think of religious ideas of life, whether we are reincarnated, if there is one Supreme Being, if there is a heaven or hell, I get confused. I've found, that my way of following religion, is to take what I like from different religions and go from there. Many of you may think I'm blasphemous for saying that, but I'm being honest. I do believe in God, I don't know if I believe in reincarnation or not. Sometimes I think we just keep coming back to Earth until we accomplish what we were meant to, and then we go on to something better. Although, that kind of means this is hell... But anyway, my point is that I believe in God, and I believe those that have died can come back to comfort, protect, guide or help us.

There have been a few occasions where I felt my father was with me. Most often, I don't feel him at all, unless I am visiting Mom, and then I do feel like he is there, with her. Sometimes, I wake up in the morning, and I can smell my Dad's aftershave, it is as though he came to visit when I was sleeping. Maybe to guide me through my dreams, maybe just to check up on me.

Last year, when I became quite ill, I had to go for emergency surgery. Initially, I was told I couldn't have general anesthetic, so I was going to have to opt for local. That terrified me, as I was undergoing a hysterectomy. Learning I would never be able to have children made me sad, but I know I can always adopt, so I was fine with that. But the idea of just having a local during the procedure freaked me out. I decided that the only way I would get through the surgery would be by practicing self-hypnosis.

I have used self-hypnosis on several occasions, and while I'm not a pro at it, it has been able to help me many times. Then I got a little weird and got it into my head that while I was undergoing the surgery I was going to speak to my Father. Don't ask me why I became convinced of this, I just was.

The day of the surgery I went in to the pre-op and the anesthesiologist came out to talk to me. He was quite upset and wanted to know why I would opt for local rather than general anesthetic. I told him I was told I didn't have a choice. He just got more angry, and then went and got my surgeon. My surgeon arrived in a flurry of blue and stomped around a bit saying there was no way he was going to perform the surgery under local. Again, I explained to him that it was one of their doctors who had told me I couldn't have a general. The two of them sputtered a lot and said some rather nasty things about their colleague and then made preparations for giving me general anesthesia.

I was wheeled into the operating room and given the anesthetic, and the last thing I remember saying was, "Hey Doc, if you have some extra time, think you could lipo out a bit of my fat too?" Next thing I knew, I was waking up on the ward. I felt so sick, and that's when I realized I never got to do the hypnosis or talk to my Dad. I was so mad, but I wasn't up to articulating very well.

My mother and a friend were there, and I tried to explain to her that I was upset because I missed my opportunity to speak with Dad. She thought I was saying I wanted my Dad, and she felt so helpless and upset. I was also convinced that if she came anywhere near my bed she was going to be clumsy and hurt me. Hey! I was on drugs, what did I know. Anyway, my friend could see that I was really upset and that I was unable to explain to them why I was upset, so she suggested they leave. Fortunately, my mom agreed with Ruth and off they went. I can't begin to tell you how upset I was. I felt like I had lost the biggest chance of my life, then the drugs kicked in again and I fell asleep.

The next morning I woke up, and began my road to recovery. People sent magazines, flowers and cards. Some even stopped by, but I was still upset about not doing hypnosis or talking to Dad , even though I didn't want to talk about it. I just kind of sulked for the whole day as I drifted in and out.

The second morning I woke up to see a huge bouquet of flowers and a card on the table next to me. My father's favorite flowers were Birds of Paradise. Whenever I see those, I associate them with him, even when he was alive, those flowers just symbolized Dad for me. One day, the summer before, I had found a perfectly preserved dead dragonfly. I love dragonflies, and I had gently picked this one up and taken it to Dad. I asked if he would do a painting of it for me. He happily agreed. Sadly, Dad never finished the painting, but I do have the sketch he had begun. Anyway, I open my eyes and see this big bouquet, and it's filled with Birds of Paradise.

Then I grab the card and open it. The card was embossed with tiny dragonflies all over it. I immediately felt like Dad was trying to send me a message that he had been there, and I shouldn't worry anymore. He was with me even if I hadn't tried to speak to him. Okay, I know lots of people will say, BAH your friends knew you loved dragonflies and what Birds of Paradise symbolize for you. But here's the kicker, the flowers were sent by the office complex that I managed. The man who rented the office next to mine had gone around collecting money and then had bought the flowers and the card and had it sent to me. Neil is a very nice man, but we weren't really friends, he didn't know me. He would never have known about the flowers or the dragonflies, so that's how I know my Father was watching over me.

-Swapna

Grieving

2006-01-25T20:05:00.000-06:00

Everyone knows there is no right way to grieve, no set amount of time given for this process. For each of us, the way through the darkness is different.

My sister found it very difficult to speak of my father's illness and death after he passed away. She also couldn't listen to the Memorial CD we had made. On the opposite side was my mother. She listened to the CD as often as she could. She spoke of Dad constantly, and she took extreme interest in going over and over the details of his memorial service.

I really have no clue how my brother dealt with the grief. He and I had a very strained relationship for quite a while after Dad's death. It continued on until a while after my mother's diagnosis of cancer eight months later.

The pain and grief my mother felt was very different from mine. I'm not one to say someone else's grief was larger, but her time with Dad was so different from mine. She and my father were still so in love when he died. They did everything together, went everywhere together, were even becoming more and more like on another as time passed. I have also lived on my own for 23 years now, my mother had never lived by herself. Finding herself alone for the first time in her life must have been frightening.

She also must have been lost. What was she going to do? All her plans for the future were based on Dad retiring and the two of them enjoying uninterrupted time together. She had retired from work herself, so she has no job to go to, nothing to fill her days with. She's a go getter, and has kept herself very busy, but those first months must have been overwhelming.

I think one of her greatest fears was that the memory of my father would fade away. She was relentless in her zeal to showcase my father's talents and good works. We had an gallery showing of his paintings, sent his latest poetry for publication, made donations to various charities in his name, and started donating time and money to work at the Friendship Inn, a place where less fortunate people could sit down for a hot nutritious meal. Recently, she returned from a trip to India, where she purchased CDs in memory of my father and had covers printed for them. I'm not sure what her next project will be, but I know there will be one.

My sister took her time in dealing with the grief. She didn't often speak to me of it, and she also went to India recently. When she was there, they visited a lot of religious locations and temples. She said she could feel Dad's presence everywhere they went. She also told me that she had a 'conversation' with Dad, and he told her some important things.

My Aunt Shara, Dad's little sister, is still hurting. I feel like she has a more difficult time dealing with memories of Dad than the my siblings or mother does. Perhaps it's because she was all alone in Toronto, whereas my brother, sister, mother and I were all here in Saskatchewan.

Right after Dad died I channeled all my energy into worrying about my mother. But even then I had no problems listening to his favorite songs, reading his poetry, seeing his paintings, touching his clothes, sorting through his papers, or even talking to people about his death. I often wondered if I was just in shock, denying grief, waiting for it to hit me one day much later in time.

Many people think I have still not yet grieved. I have come to look at it differently. I think I grieved the day I understood my father was going to die. Once I accepted his illness, I think I spent more time thinking of all the good he had done, than what he was missing, or what we would miss.

Don't get me wrong, I have moments when I feel overcome, but they don't happen very often. The last time I had a horror moment was when I was shopping with my brother in December for his birthday present. We went to a clothing store and I saw something that I know my Dad would have loved. I went over to pick it up for him, and then I remembered that he was dead. I thought I was having a heart attack. I could barely breath, the room felt like it started to spin and my heart was beating so fast I thought it would punch its way out of my chest. But after a couple of minutes it all settled down, and I was fine. I even found a very nice sweater for my brother.

I think I made it through his death by having my family near me. By talking about him whenever I could. By having his paintings hanging in my home or seeing his picture on my nightstand. By remembering what a good man he was, and by reveling in the knowledge that he made a difference in this world.

I know that friends and family always help, even when they say the stupidest things. It's easy to understand they mean well, the rest just doesn't matter. I know you can't run away from memories, they follow you everywhere you go. I know those same memories that can be so difficult to deal with at first, become the cherished memories you cling to in later days. I know the world works in a magical way, and when you feel lost, you will find a sign to tell you that your loved one is there with you.

The Hours After Death

2006-01-24T23:39:00.000-06:00

I'm a lost little girl, I just want my Daddy. He's gone someplace and I can't find him. I want to sit down and cry. Who is that man lying there, the pale remembrance of someone I used to know. It can't be my father, for my father is not a tiny wisp of a man, with hollowed cheeks and translucent skin.

When Daddy died, and I don't think I missed a beat. Some switch in my brain turned on, and all of a sudden I was on autopilot. After everyone came to Dad's side for a few moments, we asked them all to leave the room. Then I removed the catheter, the subcutaneus sites, the patches, the tray of medical supplies. Along with my Mother and sister, we dressed him in clothes his brother had brought from India. Under the long white shirt(Kurta) he wore the t-shirt my mother had bought for him in the early days of his illness. I don't remember what it said, something like I Love Dad...I hate that I can't remember what it said, but Mom will know.

We stripped the bed Mom had been sleeping on, and put on clean sheets, then we moved Dad on to that bed. We moved the other bed out of the way and then my mother sent my brother out to buy flowers. I remember thinking, "Oh Man! It's Sunday and Mother's Day, he's never going to find any flowers!" But he did.

For a brief moment I was alone with Dad. I said a prayer and I touched his feet asking for his blessings. I remembered what my religious Aunt had told me to do, so I surreptitiously anointed his forehead with the holy water from the Ganges as Mom came back into the room. Then I placed a rolling cart at the head of his bed and we put the Holy water, the Gita, and a lit candle there. We covered him with a crisp, white sheet. Sometime after that, we started making the calls.

People began arriving at the house almost immediately. Someone was handing them flowers as they came in. Each of them went to Dad, some prayed, some cried, some touched his feet, some touched his forehead, every one of them laid the flower they had been given on top of him. I remember thinking, "Oh God, I didn't buy Kleenex, Mom is crying and she needs Kleenex, why is she using paper towels." It was such a huge thing for me, I immediately left the room and went to find a box of tissues.

More and more people were arriving. The funeral home director and some assistants where there. Dr. Harington had arrived earlier and officially signed the papers pronouncing his death.

Nobody was really coming near me. I think a few people gave me a brief hug, but I was definitely giving off a vibe that said, "Don't Touch Me, or You Die." I felt like that when we cremated Dad too, it was as though anyone touching me would break my strength and I wouldn't be able to go on.

All of a sudden, one woman, who shall remain nameless, grabbed my arm in a vice grip and started dragging me towards my father. She said, "TOUCH HIS FEET, TOUCH HIS FEET, take his blessings!" I was so angry. I'm not stupid, not only had I already done this, but in that brief moment I knew that nothing, NOTHING, could ever stop me from receiving my father's blessings. I had been receiving them from the day I was born, and in that moment I knew what it mean when Dad had laughed at me and said we don't need a father-daughter talk. All was well with us, nothing had been left unsaid. I think that revelation was what stopped me from slapping the woman. I yanked my arm away and walked off.

I kept going to my Mother to see if she was okay, and then it dawned on me that I had a brother and sister too. I looked for both of them. My sister was so pale it frightened me, and my brother had a blank look on his face. I don't remember what they were doing, but I remember thinking that my brother looked strong and I would go to him if I felt a moment of weakness. Right then I looked at my father again. Really looked at him. I had seen him every day for the past few months and so I had not realized how thin he had become. He looked so fragile and small underneath all the flowers. The skin of his face looked so delicate and pale. I thought of him as thin and gaunt for a fleeting moment, and then all I could see was my Daddy, tranquil, peaceful, almost glowing, just sleeping quietly.

Someone had started making tea, and I think a few people were drinking it, but most were just milling around comforting each other and my mother. Eventually it was time for the funeral home to take Dad's body. As I'm writing this I feel the same sense of panic I felt at that moment. As though taking him out of that room and away from all of us would leave me without a purpose in life. My brother and I helped the people from the funeral home move him on to stretcher. Then I had to do the zipper up on the body bag. I think that was the hardest thing I had to do during his entire illness.

After that people moved to form an opening for us and we wheeled him out the front door to the hearse. And then they took my father away. I have no recollection of the rest of that day at all.

-Swapna

The Moth

Pale, white, tissue paper thin
spiralling upwards
drawn towards the searing white

your wings beat a frantic tattoo
then begin to slow

you are gone
consumed by the heat
of this incandescent light

The Morbid Details of Death

2006-01-23T21:14:00.000-06:00

Anything I mention today can be done after your loved one has passed away, however I feel there are several good reasons not to leave these tasks until that time. Primarily, I think dealing with details such as funeral arrangements and legal matters are significantly more difficult to comprehend when you are reeling with grief. I'm not saying that doing them earlier makes them a whole lot easier, but I think the benefits are obvious when you are not panicked in the aftermath of losing someone.

Legal Matters

As previously mentioned, upon getting the diagnosis Dad shut himself away from all of us and got his paperwork in order. There was a lot for him to look after and my mother and sister helped him with this task. There was the will, investments, bank accounts, insurance, title transfers, the list goes on.

Lots of people die without having taken care of these things, but my guess is that it is easier to address when the person is still living. It is also probably a lot cheaper in many ways. For example, bank accounts can be changed to joint bank accounts so that someone still has access to the funds prior to the legalities of the will being completed. Or property titles can be transferred, I'm not talking about cheating the government out of taxes, I'm just recommending that these things be taken care of early so your family isn't left to contend with bureaucratic crap or financial worries when they are in a fragile state.

Outside of this type of work, there are a host of other things to look after. Although none of us were wanting to broach the subject, we all knew that we would have to ask Dad about his personal wishes regarding his care, the funeral, and the service.

Your choices of care

My father was very clear about his wishes for his care. He wanted to be at home, and he filled out forms giving each of us the authority to act on his behalf should he become incapacitated. He also signed forms refusing any heroic measures being undertaken to save his life. In other words, he didn't want to be on a respirator, or be resuscitated if his heart should fail, things like that. Your hospital, Home Care, Cancer Clinic, will all have these forms and will be able to explain each choice.

The Funeral and The Service

My father decided he wanted to be cremated, so we had to look into that, although it was a very simple task. Then we had to think about the memorial service. Where would it take place? How many people were we expecting? Which Funeral Home should we use? What kind of a service did we want? Did we want to do anything extra for the service? Would we be serving food or drinks? Who was going to speak? What kind of flowers did we want? Were we going to set up a fund or specify where donations in lieu of flowers should be sent? If we did select a charity or fund, did Dad have a choice in mind?

Initially, my sister assisted my father in planning the funeral. She helped choose the artwork for his funeral program, the picture for his obituary, and the poetry that would be included in the program. She even made a mockup of it all, so my father could approve it.

Then I was asked to write the obituary. Now I'm positive my recollection of this next part differs from my mother's and my sister's, but here is my account of it. I wrote the obituary, then gave it to the rest of the family to read. My mother and sister objected to the majority of it, and my brother didn't like some of it, so I rewrote it, and rewrote it, and rewrote it. After a few tries I gave up on all of them and wrote what I felt everyone would be happy with, tweaked it a bit, then took it back for a final round of criticism. This time everyone was accepting of it. Not exactly enthusiastic, but by then we had other things to worry about.

Ironically, once it was published, both my Mother and my sister asked why I had cut out certain parts. When I pointed out to them that those 'certain parts' were the very same parts they strenuously objected to, they basically told me I was imagining things and they would never have said that. AHEM, I might be overly sensitive, but I wouldn't cut out entire sections of my first draft if I had thought there was any chance that mom and my sis would accept them. Fortunately it really didn't matter.

I suppose I could have asked my Dad to look at it, in fact, I think I might have offered or at least asked the rest of the family if I should. To tell the truth, I just don't remember. What I do remember is that he never did read it. I'm glad, I think it would have been horrible to read about your own life as if you were already gone.

My point is this, if you are caring for someone who is terminally ill, write the obituary sooner rather than later. We needed several different pieces as different organizations wanted to include a notice of his death in their publications. There were medical journals in Saskatchewan, Saskatoon, England and India, poetry groups in India and Saskatchewan, and two different art groups in Saskatoon. I probably could have given them all the same write up, but each publication wanted to highlight the work he had done that was pertinent to their area of interest and some wanted to include details about the funeral and memorial service.

You will also need to have a suitable photograph ready for publication. We had lots of pictures taken after we found out Dad was ill, but by then he was starting to look gaunt, so finding a recent photo of him alone was a bit tougher. During the memorial service we also set up two 'Memory Boards' with a collection of pictures of Dad with his friends, colleagues, patients, family and at the different places he worked. Collecting these pictures also takes time. We didn't do this early enough, although many people would come by the house and leave photographs in our mailbox. Little reminders that they were thinking of us and of the fond memories they have.

Because everyone was being informed of Dad's illness, several of his places of work arranged for get-togethers to show Dad how much he was loved and for people to say goodbye. As I mentioned earlier, we also arranged our own gatherings so that Dad could say goodbye to many of his dear friends.

When it came to deciding where they funeral should be held, I think we all had assumed the ceremony would be at the temple. Surprise, surprise Dad said he didn't want it there. I know it wasn't because he had lost faith or anything like that. I think it was because of the way the temple is run today. My mother was one of the main reasons we even have a Hindu temple in Saskatoon. She spearheaded the fundraising to build the temple, traveled to India to get the decorative pieces and murtis (statues) for the temple and many other things. Then, many years later, lots of little things started happening that bothered my Dad. I think the worst was when my mother suddenly developed a severe allergy to incense. Because most of our ceremonies involve incense, Mom rarely goes to the temple anymore. On one particular occasion she wanted to attend a service, so she asked the people who were organizing it if they could start the service without incense and she would attend the first ten minute. Then they could light the incense and she would leave. They refused her.

Woops, I'm getting sidetracked! Anyway, Dad did not want the service in the temple. We then figured we would have it at one of the funeral homes, and didn't really address the situation again till much later. Before Dad died we did find a funeral home to handle all the arrangements, but that particular funeral home didn't have a hall for services. We met with the funeral home director, and then left the majority of the details to my brother.

As far as the service was concerned, my father specifically asked for two songs to be played, one recorded and one live, and that two of his friends say a few words. It was also decided that my brother would introduce people and that I would give the eulogy.

Everyone in the family looked at several different venues for the memorial service, as we decided the actual cremation would be a smaller affair. We hadn't really found one we liked but we had narrowed the list down. We were particularly interested in two different places. One was a Funeral Chapel the other was our Western Development Museum's hall. Sounds weird, but when my brother and I looked at it we thought it would work well whether there were 300 or 1000 people attending.

My brother liaised with the Funeral Home to decide on what kind of a casket we wanted, how we would get to and from the crematorium and memorial service, and he and his friend Brent created a CD of songs to play before and after the ceremonies. Sounds like we had everything under control right? Wrong.

As Dad's illness progressed we pushed thoughts of the service to the back of our minds, then all of a sudden he was gone and we had to think of all those things again and more. First of all we had to make phone calls and inform people. Fortunately we had a list made ahead of time with phone numbers. (I will talk about the personal details of this day in another post.)

As far as the service was concerned, we had to wait till the next day before we could confirm a location as Dad died on a Sunday. Monday morning when we started calling around we found that most places didn't have availability. We were in a panic and were looking for a place for Wednesday when all of a sudden we heard via the grapevine that St. Paul's Hospital had arranged to have a service for Dad on that same day! They had already posted notices about it too. It was weird because we didn't even hear it from the hospital staff directly. In the end it worked out okay as we decided on Thursday for our memorial service and were able to secure the Western Development Museum for that day.

We decided on very simple food, and the Museum restaurant was preparing it, and we also decided to showcase Dad's artwork. For this we had to call around and find someone who could rent us about 50 stands for paintings. Then we had to decide on a setup at the museum. Initially we thought about 300 to 400 people would attend, so we informed the museum staff of this, and my sister also decided to take care of having the programs printed. My mother was adamant that we only get 100 programs and arrange seating for no more than 200. The rest of us were sure we would need more than that, but Mom would get upset when we broached the subject. My sister went ahead and arranged for 300 programs, and my brother and I decided on seating for 500, with the ability to add more chairs if necessary.

When Mom was finally able to explain some things to us, she told me that the reason she didn't want more programs printed was because she didn't want to have excess programs lying around. She told me she would never have been able to bring herself to get rid of them and so she would rather have less than more. When I think about it, I understand her reasoning completely. My father's picture, his artwork, his poetry, all of those things were published on that program. I would have found it difficult to throw them out too.

Mom took care of the floral arrangements, and we also had a picture of Dad blown up and mounted on cardboard. It was just a lot of little work that I hadn't expected.

So we first had the cremation, then we had the service at St. Paul's Hospital, and finally we had the memorial service at the Western Development Museum. The cremation was a small affair, with only family and close friends, the hospital service was also a very small but touching service. Our memorial service...well there were over 900 people with standing room only. It was so beautiful, and everyone took the time to come and talk to us after.

It is my belief that the memorial service is the one thing that really helped Mom get through much of the pain in those early days. The service was so moving, and seeing all those people that loved Dad made a difference to each of us. One of the most touching of moments was actually a surprise to my family. As we prepared to enter the room and walk towards our seats, several nurses, in their original Grey Nuns Uniforms, rose and formed an Honour Guard for us to pass through. A very fitting tribute for someone like my father.

There is so much more to tell, but this post is getting far too long, so I shall return tomorrow with more information.
-Swapna

I Was Wrong, There is More To Tell

2006-01-22T20:29:00.000-06:00

Well, after heading to bed last night, I thought of many more things I should be telling all of you in this story. However, I need to have an early night this evening, so I will post a few pictures for you instead. It's about time you all get to meet my mother and father anyway. I'll also post some of Dad's artwork, and a few of his poems.

Hope everyone enjoys them! See you tomorrow.
Swapna

ALL PHOTOGRAPHS AND POETRY are private property and have been copyrighted (copyright 1974, 1976, 1977, 1988, 1995, 2001, 2002, 2004). Any use of the following works must be approved prior to use by a member of the Padmanabh family.

Mom and Dad one month before his diagnosis

An oil painting based on Dad's trip to Andorra and Barcelona

Sunflowers

Untitled Nude

Untitled

Pastoral
cleft feet
and bit grass
in a pull of flies:

bleating goats,
droop-teated,
dropping black beads
like chiselled gems,

pulling down
the pleated hay
of heat-hardened huts.

I don't know
what bliss there is
in a memory
such as this.

or of sun-burnt,
bone-thin children,

but there is,
dammit,
there is.

-S. Padmanab

325 - Bed 4
I did not tell her it was cancer
It was just the cells growing in exuberant joy
I said
like when you step out in the glorious morning
and see golden leaves
lazily spiral downwards
and the sun stripes you through the trees

Will it hurt doctor?
just the cells growing
like busy bees fashioning
their yellow matrix of wax
growing and growing
fanning out
like waves in the sea
reaching out

Will it kill me doctor?
you are asking too much I said
gently, I hoped
who am I to know what death really is
it is probably like the city asleep
each cell laying its tools down
thinking up dreams to dream that night
only the sun rises no more

I pity you poor bugger she said

- S. Padmanab

Night-Song

loving you,
I think of twisted, leprous hands,
rains laying waste the year's harvest,
people shooting each other off
in war
or by accident.

you think I have wandered off
into a private land of pleasure,
leaving you lonely
in your turbulence.

but love,
I will join you,
my lust a trifle late perhaps,
when I have rebuilt cities
and caused children
to be born perfect
in a loving world,

as you lie thinking
how long will he take.
- S. Padmanab

The Birth

at the far edges,
ripples grow small and fade;
the blue-green lies unruffled,
banks heavy with olive,
broad hearts of leaves
through which lotuses jut
like white urns.
this is a tenuous time,
chained to that single bud,
red and unknown,
red and fearsome,
its hesitant petals
beginning to push back
the rays of an autumn sun.

o child, do not be born.
cast no doubt into our ordered lives.
go back to that vast womb,
reverse the conception

o mother, take him back,
back into the green waters of your mystery.
we are not ready,
not now nor ever.
take him back to your dormant being,
your silence of centuries.

do not blind us with beauty or truth.
do not blind us with fury or strength.

o mother, take back your child.
leave this, our fragrant white world
of lotuses and the vagrant bee,
leave this little world
undisturbed.
- S. Padmanab

The End Nears

2006-01-21T21:17:00.000-06:00

I received an email from a friend today. This is part of what she had to say:

I’ve started to read Dying with Grace and I find it difficult to “be” present with it, my own fears drift in and out of my head, and I feel stunned knowing how much you endured. Although I “knew it” in my head, I never connected to it as deeply as I have reading through your blog, at times I can’t breath.

I was surprised and decided it was time I do something I had not yet done. I read my own blog. Apart from all the horrifying grammatical and spelling mistakes, one thing really stood out for me. We found out my father had cancer on February 12th, 2004, and 59 days or 1416 hours later, my Dad died. Despite so many days of caring for him, I find myself nearing the end of this tale so quickly. I can't believe that I have taken what my family endured in that time, and broken it down into a few pages of writing. I feel as though there must be so much more to tell, and yet, as far as his care is concerned, I've almost finished telling it all.

The year after my Dad's death was also very difficult with lots of nursing as my Mother had surgery, then I had emergency surgery, and then we found out my Mom had cancer. Her tale is yet to come, and really it should be told by my sister, as she was my Mom's primary caregiver, but I'll probably end up blurting it all out here anyway. I will also begin the rewrite of all these posts as I try to fashion them into a story, rather than my late night ramblings.

And so we come to this one truth. As all of our stories continue on, I find myself afraid to finish this story of my Dad's illness. I feel as though I will be putting him to rest forever.

Premonitions of Death

2006-01-20T16:53:00.001-06:00

A few days ago I posted a commentary on paranormal type events on my other blog. Reading other people's comments reminded me of a few premonitions I had concerning my father's illness.

In the fall before my father was diagnosed with cancer, I had a friend going through a very similar circumstance. Camellea's father, Fred, was in the hospital dying with stomach cancer. He had been ill for a long time, and I had last seen him when his family threw a beautiful birthday party for him. They were taking lots of pictures and I have a fantastic snap of Fred and I hugging each other. Fred, was very weak at that time but he was still at home.

Once I knew he was in the hospital, I decided to go visit and so I got ready, picked up some flowers and headed over there. Once at the hospital I made my way to his room and from the doorway I could see his wife sitting in a chair next to him, and Camellea bending over him.

For a moment my vision blurred, and then suddenly I was no longer looking at Camellea and her dad, but instead saw myself bending over my father lying in a hospital bed. It scared me so much I just turned around and walked out of the hospital. I kept wanting to go back, but I felt very weird about it. Finally, Bill (Camellea's cousin) said he was going and I decided to go with him. We arrived at the hospital in time to see Fred lying on the bed breathing laboriously and very erratically. We went into another room, and a few minutes later someone came to tell us Fred had passed away.

About four months later we found out about Dad's cancer. To this day I believe someone was trying to prepare me for what was to come. Later, I had another premonition. During Dad's illness there were always differing opinions on how much time he had left. Dad, himself, thought that he would die within a month or two of his diagnosis, while others thought we were all crazy and he couldn't possibly be that ill. However, the doctors all agreed that he probably had no less than one month and no more than three.

As time passed I remember Dad pondering aloud as to how he could be lasting so long, and I remember Dr. Harington not wanting to prescribe large amounts of medication as I think he believed Dad would pass away soon too. I always thought Dad would go rather quickly as well, but I never really had pinpointed a date or anything. Then one day, about two weeks before he died, Dr. Harington came to the house and after spending some time with Dad, he spent a few minutes talking to me. During that conversation I told Dr. Harington that Dad would die on Mother's Day, and that Dad would be alone when he died.

I don't remember where, but I had heard that often people need to be alone before they can pass on to the other side. Somehow that stuck in my head. But it was still a stupid thing for me to say, since we never left Dad alone, someone was always with him. When I think of the conversation I had with Dr. Harington that day, I'm sure he must have thought I was nuts. I never really thought of the conversation again until after Dad died.

On Mother's Day, my parents best friends (Dr. and Mrs. Sisodia) came to the house. Dad was very weak, and we took turns reading to him from the Bhagavad Gita. Our house had a very open concept, so the dining room was open to the kitchen, which overlooked the room family, where we had set up the bed for Dad. So basically, you could see Dad from the kitchen, and if you stood up, you could even see him from the dining room.

Because it was Mother's Day, I decided that we should all sit around the dining table for brunch. Dr. Sisodia didn't want to leave Dad's side and said he would eat there. But I wasn't having any of that, I said that I knew that Dad would want us to sit together since it was Mother's Day. I made everyone move to the dining room and we started having brunch. Part way through the meal my mother asked my sister to go check on Dad. To be honest, I wasn't really thinking of Dad during that meal, I was more focused on Mom and Mrs. Sisodia, thinking that it was kind of a crappy Mother's Day for them.

Then my Mom went to check on Dad and my sister came back. I think it was about then that I realized something was wrong. I went over to join Mom and found that Dad has passed away. Mom didn't want Uncle Sisodia to know Dad had died alone as she was worried he would feel horrible that he didn't stay by Dad's side. She told me to go back to the table and wait a few minutes and then tell everyone what had happened. I went back to the table and it was so weird. My brother and brother-in-law were having a discussion, my sister was sitting there looking devastated and I was counting seconds in my head till I felt I could tell everyone what happened.

Finally I interrupted the conversation and told everyone. The rest of that day is something I will leave for another post. Strangely, even though I had told Dr. Harington that Dad would die on Mother's Day, and that he would be alone, I never once thought of it on that day.

Even more amazing was that we NEVER left Dad alone. I mean okay, when he was still mobile he had moments alone, but once he was really ill he was never alone, not until that moment when I made everyone leave his side. I suppose I could feel guilty about it, but I don't.

-Swapna

Sorry No Post Today

2006-01-19T22:40:00.000-06:00

Need to clean the house, back tomorrow!
-Swapna

The Horrible Little Things

2006-01-18T21:59:00.000-06:00

When someone is ill their decline towards death brings a different sort of fear into your heart. Once you have accepted they are leaving you, one would think that you calmly accept all that comes your way. Instead, if you are like me, you become so frightened that you will fail them. That they will suffer, that you should be doing more, that somehow, you could and should make life better for them. In those moments, the reality of the illness can drive you insane.

People who are that ill all go through defined stages in their illness. Many of the smaller symptoms that appear in those times are things that grip your heart in a vice and squeeze till you can't breath. As Dad became more weak, his ability to do the simplest of things started to fail. There was a time when he really couldn't clear his throat anymore. Phlegm started to build up in his throat and he couldn't clear it. When he would start to drift off to sleep a horrid rattle (sometimes called the 'Death Rattle') would begin, and as a result he would immediately wake up.

If you hear that sound you will know why they call it that. It's as though Death is creeping up on them, just waiting for you to avert your eyes so it can snatch your loved one away. I wasn't about to let the rattler take my father from me. Nor was I able to sit by while I saw my mother reel in co-sympathetic pain every time Dad took a breath. I asked around but no one really had a way to resolve this problem, so I decided to get creative.

I made Dad sit up, then I explained what I was going to do. I told him that it wouldn't be fun, but at least it might clear his throat. So I filled a large syringe (without the needle) with fairly hot water, then I asked him to open his mouth as wide as he could. Next I used as much force as I could to shoot the water through that syringe towards the back of his throat. This made him start to cough and poof, up came the phlegm. I know it sounds barbaric, but it worked and he could sleep again.

Many patients also become so weak they can't keep their eyes closed. This happens not only because they don't have the strength to keep them closed, but also because their eyes become very dry from a lack of blinking. To counter this we found a rather simple solution. Actually, I think my sister thought of it. We bought make-up removal pads and some normal saline. Then we soaked the pads in saline and would gently close dad's eyes and then place the soaked pads on top. After about five or ten minutes we would remove them. This moistening of the eyes solved the problem. I admit that although I'm sure it soothed Dad's eyes, it probably helped us more than him. Staying by his side while he slept with his eyes partially open was very disconcerting.

Other problems you might face and some solutions:

Keeping the patient's lips from chapping is also important. I just used a thin layer of vaseline to accomplish this.

When Dad was almost comatose, we would take a moistened q-tip and gently swab the inside of his mouth. Home Care had mouth swabs, but they were all really gross tasting (I tried them all), so the wet q-tip was better than anything else.

Never forget to keep your loved one's nails trimmed either, both the hands and feet.

Massage of any sort can make a huge difference. You have to massage their entire body, but I generally gave a bunch of small massages rather than one long one. When Dad wasn't able to move around much it became very important to keep his circulation going and massage was able to accomplish that. Don't forget to give them head massages either, and always be aware of how sensitive they become as the disease progresses. Towards the end I wasn't really massaging as much as I was almost gently rubbing or stroking his legs and back. He was so frail anything harder would probably have caused him pain.

Keep audio books and music handy. Dad was often too weak to keep his eyes open, but he enjoyed listening to music. I didn't have audio books, but we all took turns reading to him.

Keep a variety of blankets handy, some days they need something heavy, but most of the time a sheet with a light blanket over top is all that is needed. Oh, and when Dad had really bad ascites, he could barely handle the pressure of the blanket on his tummy. We solved that problem by putting bolster cushions on either side of him and pinning the blanket to it so it became a sort of tent over his stomach. They do have those tent contraptions at the hospital, but we had a hard time tracking one down.

Be very aware of not only your own personal hygiene but your loved one's too. Don't wear perfumes or use highly scented deodorants and shampoos etc. And for your patient, keep things like bladder control pads handy. Dad didn't actually have a problem with his bladder, but he was always worried that he would not be able to get to the bathroom in time. The pads gave him a sense of security, and that is often worth more than you can imagine.

Breathing difficulties also happen. If you think you are going to need oxygen at home make sure you requisition it ahead of time. There's a little more red tape in getting this than the other equipment we requested. Unfortunately, Dad couldn't stand the smell of the tubing, so we had to give up the oxygen. (It smelled like stale curry! And yes, it was new tubing, that's just what it smells like, both Dad and I agreed on that.)

Oh, before I forget, one of Dad's favorite drink (which I forgot to mention in the earlier post of foods)was what we call Lassi. It is buttermilk diluted with water and then had some crushed dried coriander, cumin and salt mixed in. Might sound horrid, but it really is delicious.

*** Ask your Home Care personnel for most of these things before you go out and purchase them, quite often they have them and they are covered under healthcare. ***

I'm sure I will think of other things as I continue to write, but that's all that is floating around my head at the moment. I also said I was going to rant on this post. Basically my rant is this, why couldn't anyone have given me these tips. Why did my sister and I have to figure this all out on our own. Don't our healthcare workers come across these problems often enough to know how to handle them, and more importantly know enough to pass these tips on?

I know I've said it before, but I just don't understand why no real guidance was given to us beyond the information the physical therapist gave us regarding pulleys, sheepskin and the bathroom accessories. I don't blame our doctor in this instance, I really blame Home Care. To me, they are the ones that should have known about such matters. I think most of the physicians believe we are given the information we need by the nurses of Home Care, but we aren't. Elizabeth Ormiston was a testament to this as she told us that in all her years of nursing she had never seen half of the solutions we came up with.

Before I end this post, I must address a few things Marcella brought up in her comments on yesterday's post. But before I do that I would like to thank Marcella for reading this blog and posting even when it brings back some difficult memories for her. Your feedback is much appreciated, thank you Marcella.

Marcella mentioned the bureaucracy and redtape surrounding our ability to ask for specific types of equipment, as well as her surprise about my catheter problems. I have to admit that I didn't really have a lot of hassles with getting equipment, but I think that was because of two reasons. One, we were at home and asking for things, so they go through a different department than if we were at the hospital. Secondly, because my father was a very respected physician in Saskatoon, I think his reputation made a huge difference when it came to giving us what we needed.

As for the problem with the catheter, I'm not sure why Dr. Harington didn't advise us of the condom catheter and I can only speculate that he thought the nurses would take care of our needs or didn't know about it. And in his defense, Dr. Harington is a surgeon, he was not my father's family physician, but became our primary physician because he is who my father wanted. As for my pulling out the catheter and not getting in trouble. Well, if I had the stuff there, I would have put it in myself as well. I got away with a lot of things that one wouldn't normally get away with. I think it was because the physicians and nurses came to know me, because I had some medical training, and primarily because I didn't give a damn and just did whatever I wanted to do. Much of the time I'm sure they just assumed I had been given the go ahead to do the things I did, as no normal person would ever take it upon themselves to be so bold.

A Nightmare of a Night

2006-01-18T02:32:00.000-06:00

I already mentioned that before Dad was very ill, he made me promise that I would arrange for him to be put in hospital if he ever got to the point where he lost control over his bodily functions. Near the end, when he was too weak to speak and was really just sleeping, it became clear he would not longer be able to go to the bathroom with or without assistance. Because he hadn't eaten for weeks, I was more worried about bladder control than anything else.

Even though I had promised him, I felt that he was really talking about a different situation, and if he was catheterized he would have wanted to stay at home. I called Home Care and arranged for them to come to the house and put in a catheter. They arrived in the afternoon, and with no problems Dad was catheterized. He was semi awake while they did the procedure, and he didn't protest in any way, so I thought everything was fine.

Later that evening, I was sitting by his bed with my sister when all of a sudden he cried out in pain and started writhing. My sister and I were so freaked out, and I realized it was the catheter that was bothering him. I deflated the bulb, and shouted at him that I was going to remove the catheter. I was so scared and I just pulled it out as quickly as I could. He immediately stopped moaning and lay quite still again. As far as I could tell, it seemed like the catheter must not have been inserted properly. I couldn't think of what else it could be.

Once again I called Home Care and told them the catheter had to be re-inserted, and they told me someone would come to the house around 11pm. Sure enough around 11 2 nurses arrived (they work in pairs at night). They quickly put the catheter back in and left. Everything seemed fine and the night passed without a problem. Shortly after 5am Dad cried out again. Once again I pulled the catheter out, and this time I knew it had to be something else that was causing problems.

I wanted to talk to Dr. Harington but it was too early to call, so I spent the next three hours fretting about the situation. I was feeling heartbroken and so sick to my stomach. After everything we had done, I didn't want Dad to have to spend his last days at the hospital. Shortly after eight, I called Dr. Harington. He decided the problem was most probably because of the growing mass, and was just coincidentally happening after the catheter was inserted. He recommended that we have the catheter put in again, and when Dad felt a spasm, I was to inject a medication to relax him. I don't think any of us liked the idea, but it was better than moving him to the hospital. Once again the nurses were called, and I ran to the pharmacy and picked up the meds to be injected.

Shortly after the catheter was put in for the third time, he had a spasm, and started moaning and moving about again. That time I wasn't in the room, and my sister and mother tried to calm him, but he was in too much pain. They were screaming for me and I came racing down the stairs. I grabbed the new medication and moved over Dad and shouted, "Daddy it's okay, I'm going to give you an injection to make the spasm go away." He obviously heard me and understood me because he immediately relaxed and I gave him the injection. I still wasn't convinced that it didn't have anything to do with the catheter since he never had the problem till we put it in.

The next time it happened I couldn't take it. I gave him the injection, but I also removed the catheter. Then I sat by him waiting to see if another spasm occurred. Hours passed with nothing, and I knew then that the catheter was the culprit. I felt so disheartened, and I just wanted to sit down and sob. Instead I called Home Care again and asked if there was any other solution rather than a catheter. The Home Care operator told me she would pass the message on to the nurse on call for our area and would get back to me. Not long after the nurse came to the house. She said she got the message and decided she would come by instead of phoning. When I explained the problem she said there really wasn't much else they could do.

She checked Dad and was getting ready to go when all of a sudden she said, "Have you considered using a condom catheter?" Of course I hadn't! I didn't even have a clue that anything called a condom catheter existed. Once she explained it was just like a condom and fit over the penis with a tube attached to a bag to take urine away, I knew it would be the perfect solution. In fact I was angry. Why would they ever have decided to catheterize him when a simple solution like this was available? When I asked, she told me it was probably because I had requested a catheter be inserted.

AAAAUUUUGH, yes, I had asked for a catheter, but I didn't know any better. They never once asked me if he was obstructed or if it was just a matter of him being too weak to be taken to the bathroom. Had they done so we probably would have used a condom catheter right from the beginning. Like I said at the very beginning of this blog, there isn't a lot of use in people asking what I wanted or needed when I had no clue.

Honestly, I think the healthcare system should be training these people to come and tell us what to expect and what kind of options we can look at! Otherwise it's like asking someone who doesn't know the first thing about farming what they need to take care of 100 head of cattle. They need a bloody cattle farmer! SHEESH

After that we had no more problems, but I still wince when I think of the pain he went through for nothing. Tomorrow I'm going to rant about a whole series of other things that made me mad!

-Swapna

Elizabeth Ormiston

2006-01-17T02:26:00.000-06:00

I'm feeling rather tired, so today's post will be short. In fact, there were many days when Dad was sick that we all were feeling very tired. Not long after Dad couldn't really manage the stairs, we moved him down to the main floor. There were two beds set up in the living room, one for Mom and one for Dad, and I had the couch. About that time the delivery of another order I had placed early on finally came through as well. This one was a beautiful chair that would recline all the way back till you were almost lying flat, and could then be moved back up till you were standing. That chair pretty much saved my life.

Even though Dad was a very slight man, it wasn't that easy for me to move him around. The chair really took a lot of the strain off of me, as I could get him into a standing position, grab him around his chest, and then kind of dance him over to the bed, couch, commode, whatever! One day Dad motioned that his back was hurting so I figured a change in position was needed. I asked if he wanted to sit on the recliner, but he shook his head no, and pointed towards the couch. I dutifully helped him up, then grabbed him and started my awkward little dance over to the couch. We were almost there when he managed to say, "Just kidding!" I looked at him like he was insane, and there was a huge smile on his face, I started laughing so hard I almost dropped him, but I managed to change directions and take him over to the recliner. He was still grinning about it an hour later.

One of the other things we looked into was the possibility of having a night nurse come to the house. Early on in his illness it wasn't necessary as I wasn't over-tired yet and because he wasn't needing meds as often. Later, when things were getting difficult, I called Home Care and requested a nurse. Our regular Home Care nurse had been coming by, but it was difficult as she was a smoker and Dad could barely handle the smell. She was a sweetheart and would even refrain from smoking on her way to work if she knew she was going to visit Dad that day, but Dad could still smell the smoke.

When we called for the night nurse I was very particular about asking for a non-smoker. We decided to get her in at 10pm the first night, so I could go over the routine with her, and then I would try and sleep on the couch while she watched over him. Dad was still able to talk then, so we weren't that worried as he could always ask for one of us if the need arose. Anyway, at 10pm sharp, the doorbell rang and I went to answer it. As soon as the nurse stepped inside the house, I heard Dad saying to me in Hindi, "I can smell the smoke already, just pay her and send her home."

I could smell the cigarette smoke clinging to her clothes too, but I was standing right next to her. Dad was in another room altogether with a door almost completely closed between us, and yet he could smell it. I politely told the nurse that I was very sorry, but Dad decided he didn't want a nurse that evening and offered to pay her for her troubles. She declined and said it wasn't a problem at all and she would just head over to give one of the other nurses a hand. (The actual payment for a night nurse is covered by our healthcare when you use the Home Care services and not a private nursing service.)

The next morning I called Home Care and asked to speak to the supervisor. I explained our little problem and asked if she had any nurses that could come and help out that were not smokers. She told me she would call me back after she looked at the schedule. Turns out all the night nurses were smokers. They wouldn't smoke when they were at our home, but they all smoked. So we were stuck with no relief nurse.

Our next step was to call a private nursing service and arrange for someone. We called a local service and they sent out someone to assess our situation. The woman was fantastic and very nice. We told her that we didn't need the service right away, but we were sure we would need it in the near future. She told us just to try and give her 24 hours notice, if possible, and she would take care of everything.

Every morning I would wake up and think, "I'm so tired, I'm going to call for a night nurse." But by afternoon I would change my mind and decide I could go another night without any relief. When I finally gave in, we called and they sent a nurse over the next night. The nurse, Elizabeth Ormiston, came with the supervisor who had been to our house for the first visit, and met with all of us. Once everyone was feeling comfortable, the supervisor left. Elizabeth was so sweet.

She and I spent some time together, and she kept telling me how amazed she was with our setup, and how she had never heard of some of the things we were doing. I was so surprised that a private care nurse hadn't learned about all the little things we were doing. (I'm making a list of them to include in a later post)

Back to that night. Our plan was for me to watch her give the first set of meds, then head off to bed, and she could take care of the rest of the night. Mom would be sleeping in the bed next to Dad, so Elizabeth wouldn't really be on her own, but I was going to go upstairs and sleep in a bed for the first time in months. After the first dose was successfully administered, I tottered off to sleep. One hour later, Elizabeth came to wake me up to watch her give the second dose. I hadn't really fallen asleep yet, so I realized she had misunderstood but told her I would be down in a minute.

I got up and headed downstairs. When I got to Dad's bedside, Mom woke up and got really mad at me. She asked what the point was in getting a nurse if I couldn't let the nurse do her job. I apologized to Mom and said I was just going to check this last dose, then head to bed. Elizabeth immediately realized her mistake, but I just smiled at her and winked. Later she confessed to Mom that she had woken me up.

I had a hard time sleeping that night, but eventually I fell asleep around 3:30 or so. At 7, Elizabeth came back to wake me up and tell me her shift was over and she would be heading off. She had taken meticulous notes on Dad during the night. Apparently Dad's pulse was very weak at one point, and both her and Mom thought that Dad died, but then he was fine again. Before Elizabeth left, she once again complimented all of us on the care we were giving my father. We all really liked her, and made arrangements for her to come back in three days. As it turned out, Elizabeth never had a chance to come back as Dad died two days later.

Elizabeth still sends my family cards on Father's Day, Mother's Day and Christmas.

Illness makes you all crazy

2006-01-16T01:49:00.000-06:00

Sadly, when an illness like cancer hits a family, it affects every person in the house. Besides having to cope with the fact you are going to lose a family member, you have to cope with your normal every day problems. I was trying to go to work while Dad was sick, but really I just had a note on the door saying people could contact me by cell phone, and then I would leave my phone on 24 hours a day.

On the days when I would try to venture out to the office, it never failed that my cell phone would ring within 15 minutes with some sort of a crisis at the house. I'm not sure why, but it was like my duty was to be Dad's round the clock nurse, if I left things went crazy. It wasn't that my mom or my sister couldn't handle things, it was just that had been DEFINED as my role, and so I couldn't escape it.

Now, speaking of craziness...Man you are not going to believe some of the things we went through. We can laugh about it now, but at the time it was so bizarre and horrid. Where to start, well I'll start with my brother, since his descent into psychosis was the least weird. Basically his strangeness was that he would come to the house and if Dad was upstairs, he would park himself downstairs, and then fall asleep on the couch. If Dad was downstairs, he would go upstairs, turn on the tv and fall asleep on the bed. He always went in and gave Dad a hug, but he just couldn't handle things. Okay, I know that's not that weird, but just wait.

So we move on to my sister, I have to say she was pretty normal throughout the entire ordeal except in two cases. The first was her becoming insistent on keeping meticulous notes on everything. Now maybe this is just how she is, but it seemed really weird, helpful but weird. The next was the night she went to visit her friend who handles the soundstage at a local bar in Saskatoon. She was there and had a few drinks, then a few more, and for good measure a few more after that. We were constantly calling her, but she couldn't hear her cell phone. I finally got through around 4am, and figured out her friend was giving her a ride home. Later she confessed she just got stinking drunk and was sitting under the soundboard half passed out for most of the night.

Then there was me. If Dad was sleeping and didn't need anything from the pharmacy I would rush out the door at 11pm, knowing I had to be back before midnight for his next dose of medicine. I would run to the nearby bar, order a huge glass of club soda with a wedge of lemon, light up a cigarette and start putting money into the vlt's (slot machines). Those machines are EVIL. While I was sitting in front of them everything else ceased to exist. Nothing mattered to me but those flashing lights and cherries or gophers or whatever game I happened to be playing. In fact, till this day I struggle with feeling addicted to them and haven't played since August 23rd. But man, I could just sit there putting in bill after bill, and it didn't feel like I was pouring money into the machine, it just felt like paper. Then, at exactly 11:45 I would race back to Mom and Dad's, go in the back door, strip down and shower. Dad was so sensitive to smells, he would have choked if he smelled the smoke on me. So I would shower, then head over to him to give him his medicine and check that everything was okay. It was really weird, those 45 minutes a day were the only moments when nothing ever worried me.

Okay, now we come to poor mom. She flipped out a few times. My mother's first flipout came about 2 and a half weeks before Dad died. I can't remember what set her off, but she just couldn't take it anymore. She kept saying she was going to drive off and kill herself, so we took her keys away from her. Then she went and locked herself in the upstairs guestroom. I totally panicked at this news, since that was the room that I had stashed all the medication in. I was so worried that she was going to take something. Right at that moment my aunt from Spain called. The house was in an uproar, and my aunt (my mom's sister-in-law) kept asking what was going on. I was trying to talk to her, while I was trying to figure out how to break into the guest room. My aunt kept yelling at me, "Tell her it's me, she will want to talk to ME, if she knows it's ME, she won't do anything crazy. Tell her I have a message from GOD."

Once she said she had a message from God for Mom, I knew there was no way I was going to let her talk to Mom in that moment. I really didn't have anything to worry about as Mom wasn't going to open that door for the phone anyway, but I wasn't thinking straight, so I just dropped the phone and ran. I really have no idea how long my aunt stayed on the phone before she realized I wasn't on the other end anymore.

Finally, I figured the only way to handle Mom was to be honest. I just told her that I was worried she was going to take the medicine that was in that room and could I please have it, and then she could be alone again. I also told her if she needed to get out of the house, my brother would drive her wherever she wanted to go, and leave her there till she called for a ride back. I think my Mom heard the fear in my voice and for a moment understood that us kids thought we were going to lose both our mother and our father. In fact, I think I even said something to that effect. So she opened the door, and I ran in, grabbed the medicine and took off. After that I started hiding the medicine. With the way we were all acting, I wouldn't have been surprised if any one of us had taken a handful of pills when those moments of utter hopelessness hit us.

Mom's biggest flipout happened a few days later. When people are as ill as my father was, their circulation slows and their extremities get cold and turn a bluish grey. For a period of time this started happening to my father, it didn't matter how much I massaged his legs,hands and feet, they started taking on that pallor of death. Then one day my aunt from Florida called my Mom and said that she had been praying and felt sure that she was told that a miracle was going to happen and Dad would be alright.

Coincidentally, the same day that my aunt telephoned my father's skin lost that bluish color and warmed up. I've never heard of this happening before, but it did. He looked so angelic, and his skin was almost translucent. This was about two weeks or so before he died, and honestly, if you looked at him on that day, you would have been reminded of something holy or spiritual or whatever you want to call it. It was like he was bathed in light. So here comes the phone call saying a miracle is happening, and there is Dad looking like an angel. Upon seeing Dad looking like that, Mom was convinced that the miracle was happening, and she told me I was not to give him any more medication.

To me, the 'miracle' meant the end was near, and there was just no way I was going to stop giving him pain killers. I tried to tell Mom that if a miracle was happening, it wouldn't matter what I did, the miracle would just happen. But she couldn't think straight at all, and started calling me a murderer and saying I was killing my father. Then she started beating her head against the wall and saying things like the day I was born was the worst day of her life, and that I had stolen the first half of her life and now I was going to take all she had left to live for. It was just horrible. I know she didn't mean it, but it still hurts when I think of it. But it was just the circumstance, I KNOW that, but I also know that Dad heard everything that was going on.

How do I know, you ask. Well, I know because the next day something astounding happened. By then Dad really didn't talk much and was often confused. Mom's birthday was on April 18th, and Dad was trying to wish her a Happy Birthday, and instead he said Happy Anniversary, things like that. Or he would be playing cards with us, and would declare his hand, but he really didn't have the cards he thought he had. (I think his vision was also affected.) Anyway, the day after this so called 'miracle' happened, Dr. Harington came for his usual visit. Dad motioned Dr. Harington over and then said a full sentence insisting that he needed to go to the hospital for another MRI. We all just stood there with our mouths hanging open, none of us thought he was capable of saying a full sentence anymore, let alone make a request like this.

Dr. Harington immediately arranged for it, since it seemed so odd and yet so urgent.
I wasn't even sure how we would get Dad to the hospital as he was so weak, but we managed it. Once at the hospital, they did the MRI and then it was time for the results. Again my father spoke. He insisted that both my mother and I be present and that Dr. Harington explain the results. The first MRI, done on my father in February, showed a small crescent-like shadow that was the cancer. This time the MRI showed his entire insides filled with cancer. Even his organs were being squished into a tiny space because the cancer had grown so much.

My father, so close to death, and unable to walk, eat, or drink, found the strength to ask for this test so that both my mother and I would know that cancer was killing him. He wanted us both to understand that there was no miracle happening, and that I was not killing him.

Those were the moments that stick out the most for me. The times when we all acted so contrary to our normal selves. The times when I know we were all so scared we tried to escape in any way we could.

-Swapna

A Problem with Healthcare Systems

2006-01-14T15:02:00.000-06:00

I know there are lots of problems with our healthcare system in Saskatchewan, but I'll rant about just one problem right now. When having a prescription filled, you take it to the pharmacy, they order in your drugs, dole it out into vials/bottles/whatever, you go back and pick up your order. Now, if you are having a prescription for something like Diladud (morphine derivative) the pharmacy most likely won't have a lot of it in stock. Once the pharmacy realized I was going to be needing it on a regular basis, they made arrangements so I wouldn't have a long wait period (YAY, Canarama Shopper's Drug Mart).

So far so good, but now we come to the sticky problem. Let's say I need 10 vials of
Diladud a day, you would think that I would get a prescription for 100 vials (10 days worth), but that's a whole heck of a lot of dangerous meds to have lying about the house. Dr. Harington really didn't want to give out a big prescription like that, and no one really thought Dad was going to live very long, so he would give me a prescription for one day's worth of medication. I had no problem with that, as the pharmacy was just around the corner and I found myself there on a daily basis anyway.

Now here's the crux of the problem; After I filled 3 days worth of prescriptions, all of a sudden the pharmacist said to me, "Sorry, I have to charge you for today's prescription." I was shocked and asked why. He said that it would be reimbursed to me, but after you fill a certain amount of prescriptions for 'controlled' medications per month you have reached your cut off limit. After that you pay then submit your receipts and they will be reviewed and reimbursed at a later date if approved. I knew there would be no issue regarding reimbursement, but but but...I was so irritated!

Basically Saskatchewan Healthcare didn't care that I was taking out small amounts of medication, they only cared that how many times I was having a prescription filled for those controlled substances. At about $160.00 per prescription, I really wasn't in the mood to dole out that much money every day, even if I would eventually get the money back. Besides, what if I couldn't afford that amount of money! This left me to ask Dr. Harington for larger prescriptions. He was as surprised as I was about this turn of events, but he said okay to the larger prescriptions. Please understand this must have been a difficult decision for Dr. Harington as I think most prescriptions go through Homecare, who have them filled and then come to the home and administer them. This way he was trusting me not to give my father a lethal overdose, or let anyone else get their hands on the drugs (drugs in the home turned very dangerous one day, as you will later find out!). I'm not sure what I would have done in his position.

To make matters worse, I then found that once the vials leave the pharmacy if you don't use all of them they will be disposed of. I could give them back to the pharmacy, but they were bound by law to trash them, even the medications that came in glass ampoules that can't really be tampered with were going to be disposed of. What a waste! As dad's needs were constantly changing I hated the thought of wasting such expensive medication whether I paid for them or not. I talked to the pharmacy and found that if the medication didn't leave the pharmacy, then they could at least use it to fill other people's prescriptions, although it couldn't go back to the supplier. Ugh!

Poor Shopper's Drug Mart! In the end they were extremely accommodating and we worked out a new method. They would fill my prescription for 100 vials, but only give me 10 vials per day. That way when the day came that I wouldn't need the medication anymore, they could at least save what I hadn't taken out. Maybe it's a small thing, but to me it was important that these medications weren't wasted.

So a great big thank you to the Canarama Shopper's Drug Mart Pharmacy, and while we are on thank you's, I think Sask. Healthcare owes me one too!

-Swapna
PS Created a new page where people can view this blog in a semi-book format (see link at top of the page). Please give me some feedback on whether you think this is a good or bad idea, and how I can improve the site. Thanks!

I Refused to Let My Dad Become A Zombie

2006-01-14T13:45:00.000-06:00

Before I get into this post, just a quick note on foods. I spoke with my mother last night and was quizzing her on the foods, since I was wondering if I forgot anything. She didn't have much more to add to my list but did make this one astute observation that had slipped by me. She told me that the only foods that would tempt Dad were things that he loved before but thought were too unhealthy to eat regularly. So things like fried foods, icecream or the coke. Just remember, don't try frying the foods in the house or ventilate well, otherwise your patient will probably be too nauseated by the smell to actually try it.

Today I'm going to tackle delivering pain medications. Please remember these are my opinions and not medical facts and I'm not advocating anything, just letting you know how I handled my father's illness.

Okay, so my personal experience with terminally ill patients was perhaps a little more in-depth than some would have. I worked as a medical laboratory technologist earlier on, and as such saw many sick people. My general opinion is that once a patient is in the hospital and pain becomes an issue, they are medicated to alleviate that pain and this can cause all sorts of other issues such as hallucinations, heavy sleeping, incoherence, confusion, grogginess, and nausea to name a few.

My goal was to medicate my father just enough to control his pain, but not enough to knock him out. I wanted him to be able to continue to interact with us. Initially it was not a problem since he was taking pills, then when then the pain became worse, we moved on to a morphine patch that delivered medication over a longer period of time. Unfortunately it was difficult to know when to change the patch unless he started feeling uncomfortable. The best solution was to give him subcutaneous injections on a regular schedule.

You don't have to be a lab tech to give these injections, your homecare nurse will train someone in your house so you can be giving them the meds on your own, or they will come and give them to the patient. Again, my problem with this system is that I felt the doses were too large, and would knock Dad out almost immediately. So if we followed that method Dad would have had a very limited amount of waking time. To get around this I decided to give him very small doses of the medication but much more often. Now really, who would want to end up sticking their father with three different medications several times a day? I know I didn't want to, but according to everyone, that was my only option.

Here's a little known fact about me, don't ever tell me there's only one way to do something, or I will find another way just to prove you wrong. This situation was no different. I thought about it for a while then called Dr. Harington and asked if there would be a problem if I put in three different subcutaneous lines that meds could be administered through. He saw no problem with that, so I called in the nurse from homecare and told her what I proposed to do. She didn't have a problem with it either so in they went.

Basically you put in a butterfly needle (with a plastic tube extension and lure lock end) under the skin and secure it with tape. The lure-lock is an end that ensures no contamination, and allows you to twist on a syringe (with no needle) and deliver medication. This was perfect! Not only was the solution perfect, but I found out that the needles, lure locks, syringes, gauze, tape, etc., was all covered, so I didn't have to pay for any of those items.

The sites can get infected, so you have to keep an eye on them. If it starts to get hard or red, you probably need to remove it and put in a new site. In our case I usually had to change the sites every 4 or 5 days. This meant I still had to poke him 3 times every four or five days, but that was much better than jabbing him with a needle 3 times every few hours. By the end of Dad's illness I was delivering pain medication to him hourly, so this method was a lifesaver.

By using this technique Dad's pain was kept under control and he was quite alert. He played cards with us, told us stories, even painted till quite late in his illness. I can't stress enough how wonderful it was to have Dad able to spend time with us when I am sure if he had been treated by conventional methods we would have lost more than 50% of the time we had with him.

For anyone wondering why we wouldn't just use one of those machines where the patient presses a button to deliver medication to themselves up to a specified maximum dosage, remember that the meds affect one's ability to think and at some point the person may not even have the strength to press that stupid button. I'm not quite sure why one couldn't just get a drip, but then again, I think it would just end up putting the person into a semi comatose-like state.

- More to come but in a new post! Swapna

Can You Force Someone to Keep Living?

2006-01-13T10:46:00.000-06:00

Well, if you insist on force feeding them maybe...

The only time I really saw my father get a little irritated with us was when we continually tried to make him eat. He had completely lost all desire to eat and had a feeling of being full all the time. Now I'm not advocating forcing someone to eat, but he lost his appetite very early in his illness. As a result we tried desperately to find foods that would tempt him.

This wasn't an easy task and I think it will be easiest if I just list the foods that worked and how we prepared and served them, as well as other items we found we needed.

-Straws with the bendy ends
-At least 2 small thermoses
-Ziploc baggies
-Plastic wrap
-Crushed ice (you need a lot of ice!)
-Mouth swabs - You can get mouthswabs from your homecare workers, hospital or some pharmacies. They are lollipop sticks with a kind of sponge on the end. Generally they are used in place of toothbrushes, but we modified them. We would run them under water till the toothpaste stuff was gone, then let them dry out. After they were dry would soak them in either lemonade, orange juice, or grape juice, then wrap them loosely in plastic wrap and pop them in the freezer.)

1) Any fruit chopped into small pieces and then frozen (he would suck on these to keep his mouth moist) - We used watermelon, strawberries, grapes, peaches and pineapple. My sister and I would cut them up and put them in baggies in the freezer. Then at night we would take a mini thermos and fill it with a few frozen pieces and icecubes and keep it by his bedside.

2) Soft boiled eggs - Sometimes he would be willing to eat a spoonful or two, but pass on the salt or pepper.

3) Olives - Yeah I know it sounds gross, but he didn't mind popping one into his mouth, nibble on it and then suck on the pit for a while.

4) Freshly squeezed orange juice - Even though he was having a fair amount of acid reflux he managed a small bit of orange juice in the mornings for a little while. (For some reason he wouldn't drink it at night)

5) V8 juice or beet juice - I bought organic beet juice which he surprisingly enjoyed.

6) Hot chocolate

7) Coffee with milk and sugar

8) Coca Cola - He went on a bit of a coke kick for a few days

That's about it. Nothing else really tempted him at all. One day, on the way back from the hospital he did mention Dim Sum (his all time favorite), so I went and picked some up. He managed a tiny bit, but I think it was a fluke, and probably the last meal he really ever had.

Remember when you are preparing food for someone who is this ill, they are only going to have extremely tiny portions. For instance, one or two teaspoons of the soft boiled egg was about the maximum he would eat. Oh, but when you put the fruit in the thermos for him to have at night, always put extra in as you will delve into it yourself.

Anyone who tells you that someone who doesn't eat or drink will die within 7 days is not necessarily correct. My father lived on maybe a tablespoon of solid food and one or one and a half cups of fluids for more than two months. In the end, I think he lived for about 3 weeks with less than one sip of water per day, and for sure he did not eat or drink anything for the final two weeks of his life.

On a bit of an upbeat note, one day Dr. Pylypchuk (Dad's best friend) dropped by for his usual visit and the two of them decided a drink of scotch was in order. I think dad actually had the equivalent of two shots. They were laughing and having a great time. The next morning was a different story altogether. Dad was completely hungover! Everyone was hovering around him, trying to make him feel better when I waltzed in and announced I had no sympathy for a grown man refusing to eat all day then deciding to break his fast with 2 shots of booze! I mentioned it was payback for his lack of sympathy when I was a teen and came home drunk. He found me quite amusing, but my mom thought I was horrid HAHAHAAA!

-Swapna

A Support System

2006-01-12T20:40:00.000-06:00

Although I'm just trying to put into words what it was like to care for my father, I wouldn't want anyone to think I was alone in all of this. My Mom, sister, brother, aunts, uncles, doctors, friends, cousins, all helped tremendously. They were invaluable.

I may touch on some of their contributions while writing this, but I really intended to concentrate on what I learned through the ordeal. However, I think it's important that you meet a few of the people who were right there with me through all of this, and begin to get an inkling of how illness can affect a family.

First, and foremost, I have to say that my sister (Sandhya) was really my rock. She lives about a three hour drive from us and had a government job at the time. She took a lot of time off, and was there whenever she could be. She also took care of things that I would never have been able to do, she took detailed notes at every doctors appointment and researched a lot of different things so that my mother could better understand what was happening to Dad. For me, she was the person who would be there to give me a hug and try to give me a bit of a break when I was tired. Most importantly, as far as I was concerned, she was the only sane person in the house.

Mom was, well she was mom. She was extremely distraught and spent most of her time by dad's side. I don't think any of us ever felt she should be doing anything else, and just knowing she was next to him made us all feel better. But I want to be honest here, to help others understand what can happen, so I have to admit that Mom's mood swings would affect all of us in bizarre ways. Mom and I have always had a very close relationship, some would say too close. We are quite alike and we often fought. In fact, I would say that if I'm upset about anything, I'm more likely to lash out at my mother, and she, in turn, probably does the same with me. There came a day when mom completely wigged out, but that was much later, and trust me, I will tell you all about it.

As for my brother, again I want to be honest. His presence always made me feel better, but I think he had a really difficult time dealing with the entire situation. Sometimes I felt like it was easier for him to be in the house, but not in the same room as Dad. I should never have begrudged him that, but at the time I didn't realize how difficult he was finding the situation, so I would get on his case about helping. He did what he could, everyone did, but some days I felt he should be doing more, and I think I made it clear to him that I was feeling that way. Looking back, I realize that everyone does what they can, I should have had more understanding of everyone.

Then there were the aunts. They were incredible. They supported Mom, and just helped out with every day things. I don't think we would have made it through without them. One of my aunt's is very religious, and she would go around praying in every room each morning. I think it irritated a few people, but it didn't really bother me at all. (As an aside, religion became a bit of a sore spot in some ways. Dad always had faith, but once he became ill, he didn't really want to talk about God or prayers. I don't believe he lost faith in God, I just think he felt his time was up. He didn't want the family to get caught up in praying for a miracle when he just didn't believe one was going to happen. I think he just didn't want any of us to have false hopes.)

My father's brother also came to spend some time with us. He lives in India, and it was a very long journey for him to take. Unfortunately, at first some of us were irritated with him. Why didn't he bother coming to visit us earlier? Why was it something like an illness that had to bring him here? Why was he acting like a guest in the house, couldn't he see we were run off our feet, can't he make his own damn breakfast? Why can't he even put a dish in the dishwasher? The list went on and on, but then I realized he was at as much of a loss as we were. So, I did what I'm known best for. I opened my big mouth and just told him that we needed help and we didn't have time to cater to his every need. From that moment on things were fine.

My point is this, someone will always put off a visit, until it's almost too late, or even perhaps till it is too late. Most likely they will regret it themselves, there's no point in making them feel worse. Also, always tell someone what you need. People aren't mind readers, they need to know what to do to help. Particularly in a situation like we found ourselves in, people just didn't know how to help, we had to tell them.

The other person who played a huge part in our making it through this was my father's doctor, Dr. Michael Harington. Just typing his name makes me smile. He went out of his way to be there for us. He would stop by almost every day. It wasn't even as if he had to examine Dad, I think he just came because he liked and respected my father, and because he knew it made all of us feel better.

Of course there were friends. Lots of friends, and they did everything they could to help us. We will all be forever grateful to them. One odd thing though, while I was caring for Dad, I often felt like I was being forgotten. I know things like that shouldn't bother you when someone is dying, but it did bother me. One day, as usual, flowers arrived at the house. I took them from the delivery person, and took them into the kitchen. I assumed they were for Mom and dad, but I was wrong. They were for me. Someone had sent ME flowers. It was my friends from Vancouver. That gesture helped me a lot. All of a sudden I was reminded that people were there for me too, I was not alone.

-Swapna

Are you as confused as I am?

2006-01-12T12:03:00.000-06:00

Writing this blog is sending my head into a spin. I keep reliving dads illness as I try to remember all the things I want to put down here. It's not really a bad thing, but it's not a good thing either. In fact, I think I'm feeling quite like I did when it was really happening, lost, on autopilot, and trying to ensure I don't screw up. I think I appeared to be in control of everything, and in fact, I'm pretty sure I was a bit of a tyrant, but it was the only way I could keep myself together. My only real regret was that I wish I had spent more time talking to Dad. Maybe I was talking to him, it's just that I don't remember what we were talking about. It doesn't really matter as I know he knew I was doing my best. And towards the end, he really only ever reacted to my voice, although he did show amazing strength in two particular cases, which I will get to later in the blog.

By now my hopes of posting all of this in a chronological order are beginning to dissolve under my need to get all of it down. Not to worry! I shall persevere. So I believe I left off with a minor rant about healthcare just before I backtracked. So let us go back to that moment.

So we are now at a time and place where ascites is really creating a problem for Dad. Ascites is basically where fluid builds up. His problem area was in his abdomen, as the fluid was creating pressure which made it difficult for him to breathe. As I mentioned before, diuretics were not doing the trick, and caused more problems than results. So we finally resorted to taking him to the hospital where they would insert a canula and drain the fluid. Initially, this wasn't that difficult as he was still quite mobile. Later it proved to be very hard to do. Anyway, we would sit in the hospital while he had his tummy drained.

I remember one day in particular, he was in having the procedure done, my mom was hovering around his room and my brother and I were in another hallway just around the corner. There were no chairs so we plopped ourselves into wheelchairs, and well, one thing lead to another and the next thing I know we were kind of racing the wheelchairs down the empty hallway. Uhhhh, mom returned just about the time we were crashing into each other, she was so pissed at us. But that moment of fun was something we both needed at the moment. We giggled like two little kids as soon as her back was turned.

After the fluid was drained Dad would feel much better for about a day or so, before it began to build up again. He never complained though, not once. I admire him for that, it was as though he knew everyone was doing their best, and he appreciated it. Honestly, if there is such a thing as reincarnation, or if we keep returning to this earth until we get it right and go on to something better, well then I think my father reached that point. In my entire lifetime I only ever heard him say something negative about one person. And even when he was saying it, he was really irritated more with what the person was doing, than the person himself.

Anyway, back to his illness and what came next. Because the cancer was growing so rapidly, and because of the fluid build up, and because of the inability to handle smells and strong tastes, and because he was always nauseated, and because he had a lot of acidity, and because and because and because...he just did not feel hungry at all. He had no appetite whatsoever. Even coaxing him to drink a little fluids was very difficult. He began to show the first signs of dehydration and his skin was getting very dry, which of course, lead to itchy skin.

To alleviate some of his problems we kind of settled into a morning routine. He would wake around 4 am, Mom would try to get him to eat something, then they would cuddle up and talk. Around 7 I would come in and mom would head downstairs to oversee the rest of the visitors in the house. Dad would start his morning ablutions and I would be on standby in case he was dizzy or needed help. Some days he needed help getting on or off the toilet, and I was always scared when he was getting into the shower.

We did get a bathlift, as Mom and Dad had a jacuzzi tub, and we thought it would be nice for him to soak in it. But the bathlift/tublift was more of a pain than anything else. It was very bulky, and the jacuzzi tub was really narrow so it didn't work that well. He did get in a few good soaks and I would use Epsom salts as they really don't have a fragrance. Speaking of which, it wasn't just non-smelling bath salts I needed. Even his deodorant bothered him, I tried looking everywhere for non-scented powders or deodorants, but couldn't find any. In the end I used corn starch on him. Toothpaste was another problem, the strong minty flavors made him gag. He wanted to brush his teeth, but it was horrible, again we resorted to good old fashioned items you find in your kitchen. We did try natural toothpaste but they didn't work, so baking soda made it's appearance. Then he would kind of swish a super diluted bit of non-alcoholic mouthwash around. Unfortunately, as time went on, even swishing liquid in his mouth became difficult.

Oh, I almost forgot to tell you how we dealt with the daily bathing. We ended up putting a pole by the shower so he had something to hold on to while stepping in. Then inside the shower I placed a waterproof stool that had holes in the seat so water would drain out, and very good rubber grips on the feet so it wouldn't slip. He would sit in the shower and enjoy the water. Some days I would wash his hair, but most days he could manage it on his own. Then it was time to get out of the shower. He would dry off a bit, slip on a fluffy robe and some underwear and then I'd help him get over to the bed.

It could have been a very difficult situation for both of us. I mean I was his grown daughter, and he needed help bathing and getting dressed. But we both treated it like I was just a nurse, and after the first day it just didn't matter. Once on the bed I would finish drying him and then begin the daily ritual of massaging his legs, back, feet and shoulders with Aveeno body lotion. The Aveeno is a great product, it's non-scented and soaked in really well. Keeping his skin hydrated was really important too. Without that he would have gone crazy from all the itching.

Once the bathing was done it was time to get him into some fresh clothes. Never, ever underestimate the power of clean clothes and bedding. My Aunt Shara (dad's little sister) took over the laundry detail in the house, and she was busy all the time! We made sure we changed his bedding every day. Fresh sheets, fresh clothes, a shave and shower...I imagine all those things make you feel so much more alive and human when you are so ill.

By the end of our morning ritual Dad was always ready for a sleep. It was tiring, but in my opinion, well worth it.

Oh, one other important consideration...toilet seats! While Dad was still able to maneuver to the bathroom he started having difficulties sitting down and getting up. We resolved this problem by getting a handicapped seat that fit over the regular toilet seat. Basically it was like a chair that fit over it. This raised the seat quite a bit, making it easier to sit down and stand up. Later we switched to a rolling commode. I would help him out of bed and onto the commode, then wheel it into the bathroom backwards, and position it over the toilet and remove the bowl from beneath, and viola. In the night, and towards the later days, when he had to go to the bathroom we would just use the commode, but the truth is, I think it was more a question of habit, so his body would tell him he had to go to the bathroom, but there wasn't anything to do, since he had almost completely stopped eating and drinking. (Important note: if you are caring for someone who feels they can't void and is in need of a laxative, do NOT use any fiber type products. A lot of those are very bulky, and unless the patient can drink a lot of water to help flush it through their system, it will cause a lot of problems. Stick with something basic like Exlax, or Senokot)

And on that shitty note, I shall post this! (Sorry I couldn't help but write that)
-Swapna

A bit of Backtracking

2006-01-11T14:04:00.000-06:00

Thanks to a blog reader, I was reminded to give you a few more details on my father. Jean mentioned that it would be useful if people knew what type of cancer my father had. Before I do that, I will give you a very brief bio on my father.

He was born in Baroda, India, and received his medical degree in Internal Medicine in 1961 from the Baroda University. Then he moved to Coventry, England, where he and my mother (Pari) were married. In 1965 I was born, and two years later we moved to Saskatoon, Saskatchewan. During this time my father earned his DCP, FRCP (Ed.) and later his FRCPC. He practiced as a Haematologist in all three Saskatoon Hospitals, although St. Paul's was his primary place of work. He also had a private practice and worked at the Cancer Clinic. During his career he was the Director of Medicine as well as the Director of the Laboratory at St. Pauls, a clinical professor and Director of the Canadian Blood Services.

In addition, my father was an avid cross country skier in his earlier years loved reading. His two greatest passions, outside of caring for others, were painting and poetry. He has been published in several anthologies, magazines and reviews, and had three of his own books published; Songs of the Slave, A Separate Life and Ages of Birds. His paintings adorn all of my family's homes, and he was quite a successful artist. Even today we donate one or two of his paintings for fundraising within the Saskatoon community.

When my father died he was only 66 years old and seemed to be in great shape and fantastic health. Although he had a few prostrate problems a couple of years prior, everything seemed to be fine. The November before he passed away, he felt a sharp pain in his groin area one night, but that passed and when he mentioned it to me, I thought that perhaps it was a problem in the prostrate area, or a hernia. I think he had similar thoughts. Shortly thereafter, he left to join my mother in Florida for the holiday season. When he was there, my mother said he seemed more easily fatigued than usual, and a little pale, but that was all they noticed.

When Dad returned home at the end of January he was feeling a bit under the weather. About 3 days later he was mentioning a bit of pain again, and I asked if he could feel anything. He just said "maybe" and I asked him to get it checked out. I then called mom and told her to come home. Dad was urging her to stay another week or so in Florida, since it was bitterly cold in Saskatoon, but I felt something was wrong and told her to come back as scheduled. A few days after she arrived home, I think he told her he was not feeling well. Between mom and I, we convinced him to make an appointment to see his family physician. His appointment was set for a Friday, but on Thursday he was doing his regular monthly clinic in Emergency at St. Paul's, with Dr. M. Harington who was running a surgical clinic that day as well.

I guess he asked Dr. Harington to check him out, and the mass was easily palpable. They did an MRI and Dad came home to await the results. When Dad got home, he said to mom, "My goose is cooked." They called me a little while later and I went there to await the results with them. By 3 pm we received the phone call and Dad knew it was all over.

The rest of that day was a bit of a blur for me, and I really don't know how we all managed to get through it. We all even joined up with some friends and went to the casino as we had promised. It was just too weird.

The bottom line was that my father had some sort of aggressive cancer which had not yet been fully typed. Arrangements were made for further blood work, a biopsy and a visit to the Cancer Clinic. My father agreed to all of these, but he had already made up his mind that he knew what he had and that treatment was not an option.

The biopsy confirmed his ideas, but we all still went to the Cancer Clinic. Once there, Dr. Hader tried to convince us that we should at least attempt an aggressive chemotherapy and decided to look into surgical options as well. My father was very diplomatic and said he would come back in a week and look at what Dr. Hader had found.

I fully supported my father in his option for no treatment, and I think Dr. Hader was quite surprised. When I asked Hader what he would do in my place, he said that he would do everything in his power if it were him. So we clearly differed in our opinions. I can't say exactly what was going through my brother or sister's minds, but I know my sister wanted more information, yet they both felt that my father knew best.

During the following week, his cancer was further classified as an adenocarcinoma, but the origin was unknown. By the time the week was up and Dad returned to the cancer clinic for a follow up visit with Dr. Hader, the mass had grown astronomically, and at that point even Dr. Hader agreed that the best case scenario would be that chemo would maybe give him an additional 3 to 6 months. However, we all felt that the price of chemo was not worth that period of time. Most importantly, my father didn't want chemotherapy.

My father must have had the cancer for a good 5 to 7 years, and despite having had a colonoscopy, prostate surgery, bloodwork, etc, nothing had ever shown up in that time frame. The only thing I can liken his cancer to, is a type of tree fungus that slowly covers the entire tree, branch by branch, leaf by leaf. It appears to be doing no harm, but one day the tree just begins to wither and die. In the same way, the cancer didn't begin to affect any of my father's organs till February.

So, as to what type of cancer he had, well it was an adenocarcinoma, probably arising from the stomach lining or maybe appendix, but we will never know for sure. Once the tests were done, and the MRI's seen, there was really no point in further classifying it, as it wouldn't matter what type it was, the treatment options were all the same.

Initially, many people questioned my father for not wanting chemotherapy, but I kind of found this all odd. He was a cancer specialist. He worked with cancer patients his entire life, if he had thought there was a chance of surviving, I know he would have taken it. Instead, he chose to live out the final days of his life on his terms. Not grasping at options he knew to be futile. My entire family stood behind him in this decision, and I give all of us credit for that. When someone is dying, your first reaction is to try anything and everything. We all had faith in my father, we didn't want him to suffer through chemo and spend his final days in the hospital, weakened and in pain.

His decision to stay at home was also a difficult one. Don't get me wrong, it wasn't difficult for any of us, we would do anything for him. It was difficult for him to ask that of us. He made me promise that if he began to lose control of his bowels or anything of that nature, we would transfer him to the hospital. He didn't want me to have to take care of him in that way, and I respected that decision, although I know I could have done it.

Anyway, now I should return to where I left off last night. So I will begin another post later today.

-Swapna
PS Please forgive my grammer and spelling, I find this all very difficult to put to paper and am just trying to get it down, not worrying about anything else.

The Birth of a Nurse

2006-01-11T01:51:00.000-06:00

Once Dad decided I would be his nurse, I settled into my new position as best I could. When dad was initially diagnosed the hospital had sent someone over to talk to us about homecare and other available services. At that time, all we did was get some pamphlets and hang on to their business cards. Because Dad's immediate needs were attending to his deteriorating strength, I began by calling the woman who had visited us and asking about what we could do to help him out. She sent over a physiotherapist who had some ideas on bed pulleys, walkers, etc. It really wasn't what he needed right then, but it was good to hear what they had available. She then referred me to a nurse from homecare.

It was at this point that I started getting very frustrated. Everyone was extremely sweet and caring, they all talked about how much my dad had done for the hospital, the community, etc, and they all kept offering their services. Just one little catch, it went like this: They come to the house, they say so many nice things, they ask what I need....HOW THE HELL DO I KNOW WHAT I NEED? I had no clue what was needed. I just knew my dad was getting weaker and feeling nauseated. Don't get me wrong, they wanted to help, they just needed more info from me, and I was unable to provide that information because I just didn't know what to say. (If there is one thing I hope to accomplish by creating this blog, it's to give others an idea of what sorts of things to ask for and prepare for.)

I wrestled with my frustration and finally decided that overdoing things was better than not doing anything at all. So I called everyone back and started ordering things. I ordered an adjustable bed for upstairs, a second one for downstairs (when available), a commode, a pole to help him get in and out of the shower, a bathtub lift, a pulley to help him raise himself from the bed, and several sheepskins to help prevent bedsores. Later we would order lots more, but this was just the beginning.

Bit by bit equipment started arriving. Now it's true that my parents have enough money to order such equipment, but don't be discouraged if you aren't in a fantastic financial position. All of this equipment was covered by our healthcare system. I'm in Saskatchewan and I'm sure not all of this is available everywhere, but always remember to check with your local cancer clinics, hospital, hospice care, home care, etc. All those people will help you out as well as they can.

Just as the equipment arrived bit by bit, Dad's condition worsened bit by bit. He had been started on oral pain relievers which caused some horrible acid reflux for him. So he was then put on Pantaloc to alleviate that symptom. At the same time he began to experience fluid retention and swelling, so he was also given diuretics. These didn't do very much good for him at all, and in fact caused a few other side effects which escape me at the moment. All I remember is that we had to give them up.

The next problem was his appetite. He didn't really feel like eating much at all, so mom would make many different dishes hoping to tempt him. Because of his ongoing weakness, he was in bed most of the time, and had some trouble sleeping as well. This meant mom was often up cooking at 4 am, since that was the only time he would feel hungry.

All of that was manageable, and we coped as best we could. But it was only the beginning of his illness and we were about to be faced with far more difficult problems. I think our first real obstacle was when tastes and smells started to really bother him. The house was full of family and we still had to eat, but he could barely stand the smell of any type of food. At first we had friends bring food over, but it wasn't a great solution as we couldn't even heat it up. We finally ended up setting up a little kitchen in the garage using our wok for most of the cooking. Oddly enough, it worked quite well.

Then Dad began to have trouble swallowing, he couldn't take all his pills, and his lack of sleep was really starting to bother him. It was at this time that I became the official taste tester of all narcotics and bizarre foods. Because he couldn't take pills even when I chopped them into small pieces, I began to grind the pills and then try and hide them in liquids that he would drink. Beet juice worked quite well for a time, as did hot chocolate, but how much hot chocolate or beet juice can a man with no appetite drink?

Dad was prescribed a rather powerful sleeping medication that was in liquid form, but oh my God it was putrid! I tried to mask it, but it was impossible. So we started relying on sublingual pills like Atavan and Melatonin to help him sleep. They worked quite well, and because they just dissolve under the tongue, no swallowing of pills is required. Another pill problem was dealing with his fevers. Because he couldn't swallow the pills, I tried looking for liquid forms of aspirin or Tylenol. The only thing available to me was children's pain relievers. Now, I thought it was a good idea, but when it came down to it, it was a horrible idea! First off, in order for him to get a high enough dose to lower his fever, he basically had to drink a whole bottle of the children's stuff. Now just imagine most foods make you sick, and I'm forcing you to drink a bottle of sweet, syrupy, artificially flavored, grape or cherry liquid pain reliever. UGH!

I'm positive many cancer patients suffer from the same symptoms my father did. Many of them must have trouble with the tastes and smells of medications and foods. Almost all must have problems swallowing pills....Why can't they make almost odorless and tasteless liquid medications. Particularly medications for pain relief, constipation, acid control, and sleeping. These symptoms have to be affecting almost all cancer patients! I hated all pharmaceutical companies at that time. Oh but I did love the Shopper's Drug Mart located just around the corner from our house. They were only open till midnight, but they got used to me tearing in five minutes before closing, dressed only in my pj's, saying I needed help and fast! They were wonderful, and I don't know what I would have done without them. Later I'll tell you about some of the more helpful things they did for me, and how stupid some of healthcare rules and regulations are entirely retarded. But for tonight, I think I've bent all of your ears enough.

Sleep well,
-Swapna

What started this

2006-01-10T01:54:00.000-06:00

I was writing a post on my main blog and found myself writing about Dad. It just didn't fit though. So I just cut it out, and now I'm going to paste it here, so I can incorporate it later.

Dad Part I
(My father found out he had cancer on February 12, 2004 and died on May 09, 2004)

My father was an amazing man, he spent the first week and a half after his diagnosis getting his affairs in order. I hardly saw him during those first few weeks. I would be over at mom and dad's place, but he would be down in his office working away. Then my sister arrived, and he conscripted her to be his assistant. I was so hurt and jealous. I just couldn't understand why he didn't want my help. My brother lives in Saskatoon as well, and he was there every day too.

Shortly thereafter, he decided most of his paperwork was done and he began shutting down his work at the Cancer Clinic, Blood Services and the hospitals. There were goodbye parties, tears, lots of things. Again, for some reason, I wasn't really part of it all. By then we had quite a few relatives in the house as well. I think my mom thought it would be rude if we all went to each gathering, so she chose just to take a few people.

Then there came the house visits. Dad decided the best way to say goodbye to friends was to have 3 or 4 gatherings and try and invite his closest friends. He really believed he wouldn't last more than one or two months, so he was rushing things. People came and went, Dad stayed bright, joking with people, laughing, being his usual self, but it was just a bit off...

Finally he decided he had enough, it was time to stop visitors. That was about 4 weeks after his diagnosis. By then he was beginning to feel weaker and was losing his appetite. Things became a little quieter, except for the phone, until we set up a system. We would call two people each day and give them an update, then they would call everyone else, our own little network. It gave us the relief we needed as we just couldn't handle the phone ringing non-stop. The visitors were much easier to handle as we just stuck a note on the door saying sorry, we are not up to visitors today.

About the time he started feeling weak, he also starting having pain. So it was time to start with a more aggressive medical approach. It was at this juncture when Dad finally called upon me. He asked me to care for him. To be his nurse.

At that time I never knew what he was really asking of me, or even if I was capable of doing it. I only knew that my Dad finally asked something of me, and I would do whatever was in my power to carry out his wishes. I was such an idiot! I remember saying to him, "Dad, you had a father-daughter talk with Sani, and a father-son talk with Nene (Sani and Nene are pets names for my sister and brother), don't you want to have one with me?" He kind of laughed and said, "No I don't think so, we talk all the time." At the time I didn't realize how important those words would be to me.

A Bit about this Blog

2006-01-10T01:41:00.000-06:00

I have decided to write a book about my father's death. Most importantly I would like to chronicle the home care we gave my father, and how we (family and friends) handled the entire event. I won't be putting this into a novel format until my ideas have all been laid out here. Once that is complete I will reformat this site to resemble a book with a table of contents etc.

If you have any ideas or suggestions I would be very appreciative.

Thanks,
Swapna