I'm Still Here...After Five Years

Five years. Five years since that doctor I had never met before confirmed what my family doctor suspected: I had stage IV invasive ductal breast cancer with extensive metastases to my liver and bones. Life would never be the same. Life would, very likely, not be as long as I expected. 

I spent an hour or so searching for the latest and best statistics about metastatic breast cancer (also known as Stage IV). Here is what I found:

• "In Canada, about 10% of new breast cancers are metastatic when they are diagnosed, and 30% of women who are first diagnosed with early stage breast cancer will go on to develop metastatic breast cancer." (Canadian Breast Cancer Foundation)
• "Median survival after a metastatic breast cancer diagnosis is three years. Median survival in 1970 was 18 months.  No one dies from breast cancer that is confined to the breast." (Metastatic Breast Cancer Network)

The Canadian Cancer Society hasn't yet released their 2016 statistics, but here is what they estimated for Canadian cases of breast cancer in 2015. (Read more: http://www.cancer.ca/en/cancer-information/cancer-type/breast/statistics/?region=on#ixzz4NSTzQ2FG):

• 25,000 women will be diagnosed with breast cancer. This represents 26% of all new cancer cases in women in 2015.
• 5,000 women will die from breast cancer. This represents 14% of all cancer deaths in women in 2015.
• On average, 68 Canadian women will be diagnosed with breast cancer every day.
• On average, 14 Canadian women will die from breast cancer every day. (Or as MBC Time put it in an October 2016 campaign, "Every 2 hours in Canada, 1 woman dies of metastatic breast cancer.")
• 220 men will be diagnosed with breast cancer and 60 will die from it.

As for Canadian survival rates: the 5-year relative survival (based on estimates for 2006–2008) is 88% for women and only 80% for men. These survival rates are for people diagnosed at all stages of breast cancer, I assume including Stage 0, which isn't yet invasive (hence not technically cancer). Of course the survival rate for those, like me, with Stage IV breast cancer is much lower. Unfortunately, I couldn't find a Canadian statistic to share. The American Cancer Society reports that "metastatic, or stage IV breast cancers, have a 5-year relative survival rate of about 22%." 

Yet here I am. Why am I part of the 22%? Well, for a good explanation of the stats, read the article "The Median is Not the Message" by scientist Stephen Jay Gould. In addition to what he says, I would point out that statistics are always based on the past. They reflect the diagnosis and deaths of patients treated in past years. They reflect older therapies. If I have been fortunate, it is that my breast cancer is identified as triple positive breast cancer. It is ductal breast cancer that is positive for the three receptors for which non-chemotherapy treatment is available: estrogen receptors, progesterone receptors and HER-2 receptors. Over the last several years, even since my diagnosis, important new drugs have been developed that target these receptors, interfering with my cancer's ability to reproduce itself and grow. One of these drugs is Herceptin. It costs some $45,000 to $50,000 per year. When it is combined with a newer drug, Perjeta which I don't yet receive, the cost mounts to $100,000 per year. So far, OHIP covers the cost of my Herceptin. For reasons related to how Perjeta was studied, I am not eligible for OHIP to cover the cost of adding Perjeta to my treatment, asI was already on Herceptin when Perjeta was approved. If my oncologist deems Perjeta necessary to my care, I will have to rely on my private health insurance to cover the cost above a yearly $3,000 deductible. But yes, I am fortunate that my doctors can rely on a wide variety of chemotherapy drugs as well as a number of anti-estrogen drugs, plus a handful of anti-Her-2 drugs to treat my cancer. Thanks to the prevalence of breast cancer, a great deal of public and private funds go towards research, resulting in the availability and government funding of numerous drugs to fight breast cancer. My sister-in-law, on the other hand, has a rare cancer for which only a few chemotherapy drugs are recommended, even though there is no research that supports their use for that cancer. So, I suppose I am fortunate.

Since my last post here, I have been on the same treatment: Vinorelbine (my vino or vanilla bean) chemotherapy, Herceptin and Pamidronate. Cancer treatment typically works on a three-week cycle. On Day 1 and 8 of the 21-day cycle, I get a ten-minute infusion of vino. On Day 1, I also get a half-hour infusion of Herceptin. Every nine weeks, I also get an hour of IV Pamidronate, which is a bone-building drug. I have been on this treatment nineteen months. And I will be on it as long as it works AND I can tolerate it. So, how am I tolerating it? Well, not bad. Initially, I had some stomach pains and constipation. They didn't last long. After a couple of months, I developed neuropathy. I have tingling and numbness in my pinky and half my ring finger. It settled down after a few months, but resumed intensity last month. I think that may be because I reduced my Lyrica (nerve pain) dose by two-thirds over the summer. I have also developed diarrhea that seems to be worse after vino infusions and disappear on my no-chemo week. The last two CT scans identified thickening of my bowel wall which may be pan-colitis. Fatigue is also an issue. It comes and goes, but I still have the occasional week where I seem to sleep for hours and hours during the day. Sometimes, I'm not able to rouse myself to make supper. I sleep through most hockey games and have missed the resolution of half the mysteries I watch. But I've kept my hair!

My medical oncologist, to whom I literally owe my life, was on leave over the summer. Lucky for me, he was replaced by two very experienced oncologists. One was very thorough and ordered a lot of tests. The other had the world's most soothing manner. I appreciate all those qualities in a doctor. Some of the tests this summer suggested that I might have had progression in my bone metastases. I was a little worried I might have to switch to a more difficult treatment regime. Hell, I was a little worried things were going downhill. While the tests used the P-word (progression), the oncologists didn't. They felt, on balance, that my cancer remained stable. Considering that my side-effects have been a little more challenging of late, however, my regular oncologist, when I saw him last week, suggested we cut the Day 8 vino infusion. (Actually, the other doctors had raised the possibility of a chemo holiday.) As soon as my doctor suggested dropping Day 8, a look crossed his face and he excused himself to do some checking. After talking with his colleagues in Pharmacy, he warned me that if I were to see cancer progression without Day 8 vino, OHIP might conclude I had become resistant to Herceptin and cease funding it. I am now on hold. Friday, I will get my Day 8 treatment and will continue to do so unless my oncologist can get some assurance that he would be able to maintain Herceptin and restart Day 8 vino if I progressed. When drugs are this costly, hard choices must be made in a publicly-funded system. All things considered, I am much happier to live in Canada, where most cancer treatment is publicly funded than in other countries where I would, even with insurance, have to pay part of every test and every treatment. I won't go bankrupt fighting cancer, at least.

I'm not sure if in my last post I talked about the effect of Vinorelbine on my immune system. Well, it does a number on it. I get my blood tested before every vino treatment and have been warned that seven to ten days after treatment, my immunity will hit a low point. I was advised to take a number of precautions, most of which I have abandoned after nineteen months. I was to avoid crowds, restaurants, specific foods and especially spoiled food, germs in general. As a result, I decided to stop volunteering at my daughter's elementary school where I was working with the Grade One and Two kids who were a little behind with their reading. I miss that. I really enjoyed reading with those kids, but truth be told, they were a bit of a snotty bunch. Even though I carried Kleenex and hand sanitizer to every session, I couldn't risk continuing to volunteer there. Even without it, I did end up in hospital this time last year. I developed pneumonia again, along with a plerual effusion.

Last year's hospitalization wasn't as scary as the previous two, when I was septic and had a broken pelvis (or both). But it was a little scary. I had several day of delirium and extreme drowsiness. My niece was visiting that week and I couldn't even carry on an intelligent conversation with her. I regret that, not that I had a choice. The pneumonia was treated with antibiotics, but I had a recurrent fever. Then the pleural effusion was found. It is basically fluid between the lungs and chest wall. I had an uncomfortable procedure during which a tube was inserted into the pleural space. Then for several days I was attached to Fred, my name for the suction unit that withdrew the fluid. Eventually, I was disconnected from Fred and allowed to leave the hospital for a couple of hours in time to vote in our federal election. I was released the next day. I think I was in hospital for two weeks, about a week of that in isolation. Fun, fun.

Really, other than the hospitalization, which I expect will be something I experience every year or two, things have been going well. My pain has been well-controlled for a couple of years. As a result, I was formally discharged from the Ottawa Hospital Pain Clinic. Of course, this means I have to go to my family doctor for my pain medication renewals. He doesn't do renewals by fax, except at a cost. So, every three months, I have to present myself to my doctor for renewals of the narcotic and other pain medications. Ah well, there is always room for another doctor's appointment.

I have just been living my life, and glad to do so. I try to make memories with my family, which is increasingly difficult now that we're living with a teenager. I'll give her credit. She was very grateful for the two week trip we took to Cape Breton Island and Moncton this summer. She is a grateful kid, with only occasional flares of "teenagerness." For this, I am grateful. Together we did the Run For the Cure earlier this month. We were out of town visiting my sister-in-law the weekend of the Run, so we did it in Mississauga. We both missed our teams, hers her elementary school teachers and mine a metastatic team. But we ran in the morning, before spending the afternoon with family and driving home to Ottawa.

I have no good excuse for not blogging more. Just that I'm living life. And isn't that what it's all about? Here's hoping in another five years I post again, if not sooner. 

Stage IV Snapshot: the pill box

Today I had to fill my pill boxes for the week. I count out all the right pills for the right time of day. The little blue set I keep beside the bed. I take those pills as soon as I wake up. They are mostly pain pills, long and short acting, to get me going. I usually awaken very stiff and sore, particularly in my lower back and hips. I also take some stomach pills then. They work best if taken a little while before eating. The other pills pull out of the big case one day at a time. If I will be going out of the house, I transfer them to a smaller daily case that has room for extra short acting pain narcotics to deal with breakthrough pain. I have pulled something in my back or ribs. I am pretty certain it isn't a fracture, so I didn't get an x-Ray, but the pain requires frequent top-ups of my Dilaudid. The daily pills are taken with breakfast, lunch and supper, and finally at bedtime. So, best case, I take a handful of pills five times a day. In reality, because of the breakthrough pain, it is much more often than that.

Here is what I take on a good day. The breakthrough Dilaudid aren't there. See, I told you. Handfuls of pills.

If you were wondering about that little white pill in the middle. That is Tamoxifen. That is the ONE pill I take that fights cancer. One pill. I take it with supper, my biggest meal, because it is very hard on the stomach. Due to the Tamoxifen, I also take two Prevacid and four Maxerand a day to quell the nausea. It usually works. This afternoon I will go to the cancer centre for my treatment. No longer on chemo, I am still getting Herceptin by IV to stop the cancer. I get it every three weeks. I will also get Pamidronate today to help my bones rebuild, I get it every nine weeks, if my creatinine level doesn't creep too high. Pamidronate is hard on the kidneys and my kidneys are showing the strain. Herceptin can damage the heart. Thank God that hasn't happened yet. I get an echocardiogram every three months to check my ticker. So far, so good,

Most of my pills are for pain. Four Naproxen, a NSAID also known as Aleve. Three hydromorphone contin, a long acting narcotic said to be stronger than morphine. Then there are three Lyrica for nerve pain. I also get the occasional epidural to help with nerve pain. Oh, and because all the narcotics make me sleepy, I now take Ritalin in the morning and at noon. Ritalin is a stimulant. It works paradoxically in people with ADD to calm them down. It generally wakes me up. I don't take it every day, so it's not in the picture. I took it yesterday at noon and nevertheless I was groggy by one o'clock. It doesn't work perfectly. And then at night I take an Ativan. It is an anti-anxiety drug that I take to be able to sleep through the night, I think I am hooked on it now, I don't like that much, but I am very cranky when I don't sleep, so I keep taking it

A picture tells a thousand words. That is why I use my Stage IV Snapshot blog posts to give you a picture of my life with advanced breast cancer. I don't believe that the millions that are spent on breast cancer awareness have done much real good. In addition to taking attention away from other cancers unfairly, breast cancer awareness hasn't spread awareness of key facts, like how many of us are at risk of breast cancer. One in nine women will get it. Men get it too. And did you know that nearly a third of patients treated for early stage breast cancer will have it return outside the breast as Stage IV cancer. They thought they were cured, but there is no cure for breast cancer.

I try to raise awareness of life with Stage IV breast cancer, whether it is the emotional side, or like today the pharmaceutical side. I hope I can make a difference. Let me know.

What's New With Me

What's new with me? Very little, I'm pleased to report.

I saw my oncologist this past week and got the results of the latest series of tests. The Herceptin can harm my heart, so I need an echocardiogram about every three months. I did the test earlier this month and my "ejection fraction" rate is just fine. I had also had a CT scan, the first since January, I think it was. My GP likes to be able to deliver good news, so he had already let me know that my tumours are stable. The remaining liver spot appears "treated." There is nothing new in the rest of the abdomen and pelvis. The bone tumours are still there but stable. My oncologist's colleague, who I saw last visit, had ordered an MRI of my axillary skeleton. The previous MRI, to which it was compared, was from May 2012, about halfway through my chemo. As a result, there were some new spots that showed on the MRI. Nothing to worry about. More importantly, the MRI showed fatty infiltration, which in English means the bones are healing.

I asked the oncologist to check out my right breast. That is where the lump was, the lump that started shrinking after the first chemo treatment. Until recently, the lump was gone and the remaining fullness was barely perceptible. That has changed. Now it feels like a lump to me. I have had some pain in that breast as well, off and on. I was a little worried. I had always felt relieved that I hadn't needed a mastectomy. For the first time, I wish that breast was gone. My oncologist, who I trust very much, didn't think it is worrisome, he said it felt "stringy." We will keep an eye on it. If it changes further, a mammogram may be needed.

In other news, Dad and I have been busy all month dealing with financial advisors and the lawyer, settling Mom's estate. There are some forms still needing to be signed. And we haven't even started cleaning out her room.  This will take a while. Meanwhile, I try to call Dad daily and see him a couple of times a week. He is coping well, but is lonely. I miss her too.

A Bittersweet Mothers Day

Any Mothers Day that I am still here with the Bean is a good one. She is eleven now, and coming into the years when she really, really needs a mother. I am grateful to still be here for her. But my own mom's difficult state makes the day bittersweet.

Last night I was instructed not to get out of bed in the morning but to just call, or ring my bell. Sure enough, Sweetie and the Bean made me breakfast in bed. This year, it was more sophisticated than most. She made me a cheese and tomato omelet. Plus juice and tea. There must be tea. I think our dearest memories of our mothers involve tea. There were presents too. A gift certificate for a pen I ogled recently. A writer needs a good solid pen, not the one I liberated from the hotel last weekend. And a Pandora charm. Not the bracelet I tried on or one of the hundred charms I had marked off in the catalogue, but the one the Bean chose -- because Mommy likes pearls. It is beautiful. (When we returned from Montreal last weekend, she and I spent an hour combing through my jewellery box and trying on dresses. We spent a lot of time on the pearls. My little Bean pumped me full of confidence in my appearance, something cancer has tried to take from me.)

I have some time to write now while they walk the dog. I am mentally preparing for the trip to the hospital. Mom has been moved out of ICU to the Acute Monitoring Area so they can continue to watch her oxygen desaturations. She is in a private room due to an antibiotic-resistant infection. We appreciate the privacy, particularly as my brothers were here yesterday and the room was crowded. 

She still isn't able to communicate with us. We can only guess at her level of consciousness. And yet we had to have another conversation last night about our "goals for care." What happens next time she has an infection and goes septic? Do we treat with antibiotics? Do we treat her low blood pressure, requiring an ICU admission? Do we ventilate her if necessary? None of us ever imagined she would be brain damaged and paralyzed. What would she say she wants? To slip away peacefully or to die trying? Do we use medical interventions because they are available? Must we? Should we? Her last words to us were to request all possible treatment. "I want to live." Does she still? And who am I to decide? 

Have you talked to your parents about their wishes? Have you considered your own? Have you considered all the options? Or put it in practical terms? Have you decided when your quality of life determines its value?

Thanks to cancer, my brother and sister-in-law and my Sweetie and I have had to ask ourselves these questions. We know the day is likely to come when further treatment will not buy us another day to hug our children -- which is all I want in life, I suppose. I haven't answered all the questions yet. For today, I will go to the hospital today, hug my Mom and drink a cup of tea. And be grateful she is still here.

Paying the Price for My Vanity

Vanity isn't the only reason I didn't bring my walker to lunch today, but it was a part of it. I feel like I look so much older and sicker with my walker. Then there's convenience. I would rather use the stairs and escalator than go around to the ramp and elevator. There is another reason. My back. I hurt it the other day (ignoring my limits) and didn't think I should lift the walker in and out of the trunk.

So I went to lunch downtown with my cane and had a great visit with my friends from work. After lunch, I stopped to chat with most of them in their offices. I didn't sit down often enough. That's why I should have had the walker, for the seat as much as the handholds.

Before I even got back to my car, I was wiped out and had to stop and sit down. I called my Sweetie on my way home and asked if he wanted me to pick up any groceries for dinner. Then I begged him to say no. I just couldn't face the grocery store. Accelerating and braking were painful. Sigh. By the time I got home I needed to drag myself inside. Straight for the couch.

I suppose that it made matters worse to have taken the dog for a walk, again with cane not walker, this morning. I'm not very bright, am I?

Honestly, There is a bright side to my foolishness. I won't shut myself in the house and wither. My nature is to regularly forget or ignore my limits. I just like to know where they are.

Stage IV Snapshot -- Soccer Mom

I haven't done it nearly enough this summer, but today I went out for a two kilometer walk. My daughter joined me and brought her soccer ball. We stopped at a park and kicked the ball around for a bit. I was able to kick with both legs. My right leg didn't fall off. That's good. I did need a Dilaudid and a lie-down after I got home. Still, I'm very glad we went out.

Stage IV Snapshot -- Tooth Fairy

What is life like with Stage IV breast cancer? This is the first of a series of snapshots of my life, my "new normal."

Yesterday, when my ten year old daughter's tooth fell out while we were out for lunch, I wrapped it in paper and put it in my pill box for safekeeping.

That's life with Stage IV breast cancer. It's about living.

Reflections on Recent Deaths

I was shocked today to learn that Roger Ebert had passed away only days after announcing he was taking a "leave of presence" due to the return of his cancer. He had so many plans for this leave and now he is gone. Just weeks ago, Donna Peach, a breast cancer blogger, passed away after what seemed to be a recurrence of shingles. Through the Twitter feed I was informed today of another passing, this time of the mother of young children.

Given my condition, I can't help but be touched by these deaths. There but for the grace of God go I. Reflections fill my head and spill out my fingertips to my blog. I need to write these things publicly. I need to be held to account. Because I don't want to slip away before I do the things I need to do.

WARNING: this post is not for the faint of heart. Please stop now if my honesty may disturb you.

First, let me say how grateful I am to have lived eighteen months since my diagnosis of Stage IV breast cancer. You don't want to know what the median survival is. Google it if you have to, but you don't want to know. My doctor talks of treating me for decades and decades. I hope so. I know he can't guarantee me that much time.

Whatever time I have, I want to write more, sit less. I don't want this sore neck that comes from too much time sprawled on the couch. Now that spring is approaching, or at least the snowbanks are receding, I want to drag my walker outside and walk, damnit! I want to smell the fresh air and feel the sun. It is time to listen to the birds call my name. I'm not confident that I can walk 5km like I did last fall. My hip appears to be healing. Walking helps it heal. What I need to do is clear.

I also want to use up my craft stash. I can't bear the thought of my Sweetheart having to sort through it without me. It would be best that he not know how many things I plan to make a purse out of, on top of all the other purses I have. There is so much wool. So many beads. I want to make a rosary for my niece before her baptism. I'm proud to be her godmother!

Organizing my paper and electronic genealogy files is another priority. Genealogy isn't a project you finish. Nevertheless, there is so much I should do, like improving my source citations and adding photos and then posting my family tree to the public. I am late in responding to a couple of people eager to share research. Cancerland has been a busy place the last few months. So many appointments. Gee, why don't I make myself an appointment to visit the National Archives again with Sweetie? I should schedule time to tackle my hobbies.

And then there is the pile of stuff at my office. I've been trying to get back there since January to sort through my effects and my working papers. I appreciate my coworkers packing up my office to clear it for my replacement, but there's so much for me yet to do. I've been thinking of holding a garage sale for the candy dishes, mugs, vases and toys I had at the office. There's a way to raise money for "the cure."

I also want to prepare for, shall we say, the worst case scenario. I need to write messages for the Bean in case I'm not here for her the day her heart is broken or she runs up her credit card. So many things I have to say. She calls them Mommy's lectures now. She is turning ten. Another few years and she won't hear a word I say. But one day she will regret that. Do I write or do I videotape my messages to her? Maybe both. It won't be a small or easy task.

There are practical preparations too. I take care of the family finances. We have been meeting with our financial advisor and most of our retirement and education savings, insurance and mortgage are with him. I think it is time to get rid of my bank account in favour of joint accounts with my Sweetheart, so he has easier access to all our assets when I am incapacitated or gone.

I have been reading books about healing, meditation and happiness. I would like to practice meditation. In fact, my physiotherapy routine is primarily breathing and relaxation. I can believe that meditation may help shrink my tumours, shall we say by helping my medical treatment to be as effective as possible. At the very least, meditation would improve my quality of life. Hmm, quality and perhaps quantity of life?

I don't know if you can understand this if you don't have a terminal illness, but one ache, one bad day can be terrifying. The bad days can snowball quickly, as they did for Donna Peach and Roger Ebert. I feel very vulnerable, naked and unarmed. Those who knew me before my diagnosis know I'm a planner. Very deadline oriented. When it came to my work, I could do miracles with the right team. I told my boss today I should have saved myself a miracle. We will see. Maybe I did.

The thing is that we don't know. Unlike my work projects, I don't know what my deadline is. Don't know how much time I have left to clean my closets, raise my girl and teach Sweetie how to pay the bills online. Truth be told, you don't know how much time you have either. You probably don't want to think about it though. I can't avoid it.

And that brings me to the thought I want to leave you with: peace. I was raised a Roman Catholic, though I'm not a practicing one. Pope Francis intrigues me and so I've been following several Vatican Twitter feeds. His words today about the "joyful wonder" of being a Christian really touched me. In my opinion this peace can be sought and received from whatever you believe is a Supreme Being or life force. Whatever your faith, please consider these words. May you find peace in them, as I do:

"Of course we cannot live forever in [a state of] wonder. No, we really cannot. But it is the beginning. Then, this astonishment leaves an impression in the soul and spiritual consolation. It is the consolation of those who have encountered Jesus Christ”.

"First wonder, then spiritual consolation and finally, the last step: peace. Even in the most painful tests, a Christian never loses the peace and presence of Jesus. With a little 'courage' we can pray: 'Lord, grant me this grace which is the hallmark of our encounter with you: spiritual consolation and peace'. A peace that we cannot lose because it is ours, it is the Lord's true peace that cannot be bought or sold. It is a gift from God. This is why we ask for the grace of spiritual consolation and peace of mind, that starts with this joyful wonder of our encounter with Jesus Christ. So be it. "

An Ordinary Day

There was nothing but leftovers in the fridge, so we ordered the "Canadian" pizza (with pepperoni, bacon and mushrooms). We ate in front of the TV as we usually do on a pizza night. Plus, the hockey game was starting: Ottawa vs. Toronto. I had one eye on the iPad through the game, playing Hay Day and reading the Twitter feed. Unfortunately, the Sens lost. We hate to lose to Toronto, but so many of our top players are out with injuries that we really didn't expect much scoring. After the loss, we sent the Bean to bed. I should have gone up at the same time; instead, I promptly fell asleep while we watched "Monk" on DVD.

In the morning, I slept in. And then slept some more. The Bean and I had breakfast together and watched the Family Channel while my Sweetie was at the gym. Next thing, it was time to shower, while Sweetie sorted the dirty clothes. Sunday is laundry day at our house. After lunch, the Bean and I went to Loblaws for groceries. Tomorrow is Family Day and the grocery stores will be closed. Sweetie is making carrot ginger soup tonight. Mmm... I also got all we need to make Baked Pasta tomorrow. Despite Family Day, tomorrow night the Bean has her first tryout for competitive level soccer. We learned last summer that pasta and sauce is the fuel she needs to play her best soccer.

So I'm sitting on the couch with the iPad watching "Income Property" and thinking about my day. It's an ordinary day really. It all depends how you look at it. But this can be a day with Stage IV breast cancer.

I Don't Just Feel Old, I Look It Too

I've been grumbling lately about the weight I have gained since my diagnosis with Stage IV breast cancer.  The research I did tells me my experience is not unique. 

There are several reasons for the weight gain that is common to breast cancer.  Part of it is water weight and swelling due to steroids.  It was so bad last winter that I needed to buy men's size 10 boots and wear compression stockings.  Much of that weight came off when my oncologist changed the steroid dose I get with my chemo, but it's not all gone.  You should see my ankles when I take my socks off at night.  Put it this way:  they are shapely in a bad way.  While I was able to wear my sandals this summer, my size 8 closed shoes no longer fit.  I had to buy two new pair of size 9 shoes.

And then there's my belly.  I will admit that part of my weight gain comes from overindulging in sweets last Christmas.  You, my friends, gave us a lot of really delicious cookies!  Not that I'm trying to shift the blame.  Well maybe just a little. 

Chemo put me straight into menopause.  According to an article on WebMD, menopause causes changes in metabolism and body composition.  It is typical to lose muscle weight and gain fat.  Guess where?  Right in the belly.  Yesterday, I had to buy a new rain jacket, because my old one would barely zip up past my belly.  I had to buy a man's extra large to fit me.  That's depressing... and the sleeves are outrageously long!

I had hoped with my training for the five kilometre Run for the Cure that I would shed some of the weight I had gained.  It isn't happening.  I will try to keep walking regularly.  I'll try to be better about the sweets.  But I think this belly is here to stay.

In addition, my hair colour has changed.  My gray hair came back white, and my brown hair has come back a washed out steel-grey colour.  I have been feeling like I aged 10 years since I got sick.  Guess what?  To my disappointment, but not surprise, WebMD says, "a woman having chemotherapy ages the equivalent of 10 years over the course of just one year." Tell me about it!

Tuesday, Pill Day

This is my routine every Tuesday morning, I take an hour to organize my pills.  OK, it doesn't take that long, it just feels that way.  And when I started on this cancer journey, it probably did take a full hour to get a handle on all these pills.  Now, I actually know what they are for (pretty much).

I have two pill organizers on the go.  One is a seven-day organizer for the pills I take before getting out of bed.  These include Dilaudid, both the long-acting and the fast-acting, to ease the pain of having been still, asleep for eight hours.  You wouldn't believe how long it can take me to get my hands and knees working.  I also take a Lyrica pill, the first of three I take during the day.  The last "first thing" pill is Prevacid, an anti-acid pill to be taken a half hour before eating.  There's not much more I could fit in this little container.

The second pill organizer has a pull-out section for each day and four compartments, for morning, noon, evening and bedtime.  In the morning, I take a water pill for my still swollen feet.  By the way, I can usually get into three or four pairs of my shoes now.  I take some Vitamin D for my bones, which need all the help they can get.  Then there is the first of four Naprosyn (Aleve) pills for the day.  They help quite a bit with the pain from my spinal fractures.  I also take one Maxerand, also for my stomach.  I should take it a little before I eat, but that never quite works out.  What else?  Oh, for my chemo day and the following day, I take a Zofran in the morning.  It helps to prevent chemo-related stomach trouble, but is terribly constipating.  I recently stopped taking Metoprolol in the mornings.  I was given it in the fall when my blood pressure was high, back when I was in the hospital.  My blood pressure seems to have returned to it's normal low, so I was able to stop that pill.

My afternoon pills used to be lighter.  The second Lyrica comes at two o'clock.  But now I'm taking a Naprosyn with lunch.  And, because of the constipating effects of the Dilaudid and Zofran, I take two stool softener and one senna laxative.  Everyday.  I don't like taking these pills everyday, but I have to admit that my body just doesn't function properly on its own anymore.  This is one of the things you don't realize about cancer, and it probably happens with other chronic, life-threatening diseases:  half the pills you take are to deal with the side effects of the other pills you take.  Argh.

At suppertime, there is another Naprosyn, plus the long-acting Dilaudid.
Finally at bedtime, another Naprosyn (with a snack to protect my tummy), another Lyrica, and an Ativan to help me sleep.  When I first started treatment, the steroids they were giving me were causing me to wake up every hour or so through the night.  While I'm off them, I now have trouble falling asleep without the Ativan.  That was never a problem before I got sick.

In addition to these, I take a Tums morning and evening as a calcium supplement.  And I take the fast-acting Dilaudid as necessary during the day for pain.  The dose I now take doesn't seem to affect me, beyond handling the pain.  Nevertheless, I don't take the full dose if I'll be driving, just in case I might get a little loopy.
So that's my pill regimen these days.  At first, I needed a complex spreadsheet to sort it out.  Now, sadly, it's easy for me.

You know, they tell you to drink a lot of water when you're in chemo.  You pretty much have to, with all the pills to take!


P.S.  Sweetie, if I suddenly get sick, you can use this blog post to make up my pills for me.  Oh, I forgot that I've started talking like the nurses and referring to all these damn things by brand name though they usually come from the pharmacy with the generic name.  I better do up another spreadsheet...

P.P.S.  I find it odd that the blog software's spellcheck doesn't recognize the word "blog."

They Tell me Attitude is Everything: A Reiki Perspective

Virtually everyone I talk to either encourages me to keep a positive attitude or comments on how positive my attitude already is.  I always feel a little guilty when they say these things, because I do have moments of fear and negativity and because I don't really know how to keep a positive attitude.  I'm mostly just grateful that when I wake up in the morning I feel positive.  I give God all the credit for this.  I don't have the power to fight cancer with a positive attitude alone, but He has been helping me.

Soon after my cancer diagnosis, I found something else that helps me to keep a positive attitude.  It's almost an exercise regime for positive attitude and I'd like to share it with you because I see the value it has for everyone of us.  This "regime" is a set of five principles of Reiki.  In a future post I'll talk more about Reiki and my experience with Reiki treatment.  These principles of Reiki, having been translated from Japanese, appear in various wordings over the Internet.  These are the words I use:

Just for today,

• I will not be angry.
• I will not worry.
• I will be grateful.
• I will do my best.
• I will be kind to every living thing.

Many of you know that I'm a pretty particular person; I call it "a commitment to excellence."  Geoff says I should be starring in "How to deal with difficult customers" training films.  OK, I won't deny it.  And the truth is that I can be just as demanding of myself, which is pretty exhausting.

These five principles, with the intention to follow them for as little as just today, give me an opportunity to focus away from the negative.  Cancer gives me plenty to be angry and worried about.  But what is the upside of focusing on that anger and worry?  What will it give me?  Nothing.  So, instead, I try to be grateful for what I have.  And I try do my best where I can.  I focus around the house.  My disabilities keep me from doing many household chores that I would like to.  But I can load the top rack of the dishwasher, and sometimes the lower.  I can cook on the stove top, but can't get anything heavy out of the oven.  And then there's the "be kind" principle.  Over my birthday weekend, I had a number of experiences with service staff who had a lot to learn.  Instead of my usual approach of being increasingly demanding, I decided to be extra understanding and supportive.  Strangely, it felt better.  It was like I felt a load lift of my chest by not beating them up for their inadequacies.  Who knew?

There is no telling how much attitude will or won't contribute to surviving cancer, but without a doubt attitude plays a huge role in terms of quality of life.  These five principles, as something to pray, meditate on or just mull over each day, give me a reminder of how I can keep my attitude positive. 

Like I said, it's like a positive attitude exercise regime.  And maybe you should try it too.

What I Need to Do Every Day

• Take my medication:  at breakfast, lunch, 2:00, supper, 8:00 and bedtime.  It's easy to forget a few of them.
• Take my temperature to be sure I don't have a fever again.
• Walk with a walker, or in a tight space a cane.
• Do my arms and leg exercises.  No weights.
• Decide whether to wear a wig, a hat, a scarf or go commando.
• Drink plenty of water.
• Put on a LOT of skin cream.  Where I had radiation the on my back and pelvis is finally getting better, but my legs and scalp are still very, very dry.
• Put on over-the-knee compression stockings to try to stem the swelling in my feet and calves.
• Put my feet up for a few hours.
• Check whether I'm due for the home-care nurse to put on a new cartridge of painkiller on my pain pump.
• Each Friday:  have the home-care nurse change the PICC line cover that connects the IV to my left arm and bloodstream; change the tubing on my pain pump.
• Pray.
• Meditate and visualize my healing.  This is another thing that I've found harder to find time for.  If I leave if for the end of the day, I fall asleep before I get very far into it.  I need to make time for this.  Whether it works or not, it gives me a tremendous feeling of wellbeing and of being loved and cared for by this world and the next.