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: Broken Rib

Part of everyday life with bone mets is never knowing when a fracture is around the corner. I would have thought, at this time of year, my biggest risk would be slipping on the ice and breaking my hip. The actual culprit:

Yup, the dog. I was in bed yesterday when Mango came up and stood her front paws on my chest. A few hours later I noticed the pain. The good news is that the pain only lasts a few days. Ribs heal quickly enough. I know this because this isn't the first broken rib I've had since cancer came into my life, the last break was around Christmas. At the time, I blamed it on exertion while carrying the Kitchen Aid mixer up from the basement to make cookies.

This is life with Stage IV. Cookies, puppy kisses. Each risks a broken bone.

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.

Port-a-Kath

That is me. I've done it. After eight or nine months with a PICC line, I gave up and asked for a Port-a-Cath. I found the dressing constantly itchy. We tried paper dressings and iodine, but still I scratched. The new PICC dressing became available, and it too caused itching. As much as I enjoyed the nurse's visits I was getting, I was done with the PICC.

I asked for it at my last oncology appointment, and within eight days I had the port in. Now it is the stitches that are itching! Is there no respite for me? A gripper, also known as mini-loc, is on place, with dressing over it for another week. It will come out after my Herceptin treatment next Friday.

I was not pleased to learn that the port can't be used for a CT scan, like a PICC can. So on Thursday I had an IV and a port put in and a PICC removed, only to have another IV put in on Friday for the CT. That plus the blood tests, makes for some bruising.

If you're keeping score, that is now three PICCs and two ports. Will this be the last? I told the doctor who inserted the port about the bruising and infection I had with the last port. He assured me those were unusual experiences and that it would be very unlikely for me to have trouble with the new port. Here's hoping it works for many years.

Another Shot in the Bum

Last June, I got my last shot in the bum in the name of science. I had a caudal epidural to ease my nerve discomfort. It took a while to work, but one day I realized that the tingling was gone. I could move into all sorts of positions without a zing.

In the last month or two, the tingling has returned, so I scheduled another epidural at our Pain Clinic. With the muddy weather, my daughter and I have had to give Mango several baths, sometimes in the same day. Bending over, even from on my knees, has caused my entire left buttock to tingle. That's not as much fun as it sounds. Just bending slightly over the sink to brush my teeth causes the same problem. I get a different tingle if I lay down on too high a pillow. Installing a car harness for Mango in the van was distinctly uncomfortable.

In advance of my two o'clock appointment, I had to fast from 8:00 am. I could take clear liquids until noon. I got to the hospital early for my appointment, as they requested. [Really, if they want you there twenty minutes early, why don't they make the appointment for 1:40?] I scarcely had time to complete the usual paperwork on my pain before the nurse called me in. From there, it was zoom, zoom, zoom and I was out within the hour.

The procedure is awkward, for all concerned. First, I had to lie face down on a slanted table with a pillow under my hips. As soon as the table was straightened and raised, my pants were lowered. Yes, the handsome technician, or was he a nurse, exposed my tingly buttocks and washed them with a bright pink cleanser. Since I had had the procedure before, the doctor and x-ray technician easily found the spot the we're looking for. The doctor shot some local anaesthetic into, um, my bum-crack. It worked instantly and before I knew it she had injected the steroid. Pants up, I was moved to a chair and given a snack while my blood pressure was monitored.

Never one to put my feet up when I am supposed to, my Sweetheart and I stopped at a pet store and the veterinarian's before returning home. I have tried to stay mostly couch-bound since then, the local has worn off, but the steroid isn't yet working. So I have a sore and still tingling bum.

The doctor used a lower steroid dose than last time, since I described my previous side-effects. Last time, I had the typical steroid face: round, red, hot cheeks. I felt "odd" for a couple of days, and low, like chemo low. And I had chills. I was just rereading my blog posts from June 2013 and remembering the side-effects. Ew. Like childbirth, it is good to forget. I hope with the lower dose, I can avoid all that. Either way, for me to do it again, it really had to be worth it. I just hope it works as long this time.

There is a lot of good information from hospitals and clinics to be found online. But if you are considering a caudal epidural and would like to talk to me about it, please email me at jimsgirlblog at gmail dot com. I would be happy to answer any questions you have. You should also have a look at my posts from last June about the procedure.

Have any of you, dear readers, had a caudal epidural? What was your experience like?

Epidural Update

I've been meaning to update you on the caudal epidural I had on Tuesday afternoon at the Ottawa Hospital's Pain Clinic. For those of you considering the procedure, I'll tell you a bit about how it was done and I will report on success and side-effects to date.

First, The Procedure

I was met by a nurse who interviewed me about my current pain medication and pain levels. After a bit of a wait (I'm not complaining), a young doctor I hadn't met before came in. I'd seen him consulting my regular anaesthesiologist moments before. He asked me a lot of questions about the extent of my pain and nerve symptoms, explained the procedure and its risks and then asked me to sign a consent form.

Moments later, a handsome young man -- who Sweetie thought was dressed for a joust given his head to toe x-ray shields -- took me into the room where the procedure would take place. He introduced me to the female X-ray technician and asked me to mount the bed. Yes, "mount." The bed was at a 30 degree angle. I was to aim my hips at one pillow and my head at the other. Now I'm not very athletic at my best... and Grace is not my middle name. So, it is a miracle I made it on there in one try. Then things got weird. I mentioned that the caudal epidural goes into the tailbone. Well, I hadn't thought through how they would get there. You see where I'm going with this? Yes, that's when The Jouster pulled my pants down around my hips. But we've just met!

He also set me up with a blood pressure cuff and the little thingy that monitors your blood oxygen. Then the young doctor came in. They placed a drape, wiped my butt with disinfectant, which I later discovered was that bright pink stuff that is hard to scrub off. Probably the worst pain of the procedure came next, when they gave me a local anaesthetic. I didn't feel much, maybe some pressure, when the doc inserted the catheter through my tailbone. The Jouster kept me informed of each step of the procedure, and reminded me to breathe deeply to relax. I felt more pressure as the doctor injected some contrast dye to mark his location. He continuously asked the X-ray tech for another shot, sometimes asking her to switch the angle of the X-ray machine for a better view. All that to make sure that the drug was released where my frazzled nerves needed it most. Next thing I knew, the steroid was being injected and the catheter removed, neither of which I felt. I was then unhooked and moved to a wheelchair for 20 minutes of monitoring... And a snack, which I appreciated having fasted through lunch.

The After-effects

The first few steps after I left the wheelchair felt a little funny, but I'm always stiff when I get up. Plus, my bum was numb. We stopped to pick The Bean up from our neighbour on the way home and I was able to stand a while to chat. Later in the evening I was drowsy, but that isn't unusual. I couldn't really tell if the epidural was working. I was told it could take a week to get the full effect. I thought I was feeling fewer zings. That was good.

The next day, I felt fine most of the day. In the evening I had some chills. I also got wicked indigestion after eating a chocolate bar. I also felt in a peculiar mood for a short while. By the next morning, it was clear that I was reacting to the steroid as I did during chemo. Thursday, my cheeks were hot and red all day. I was told I looked like I was teething! The chills continued off and on, as did the indigestion. I felt quite low, chemo low, for a couple of hours Thursday and again Friday. For what, I ask you?

This is the problem, the zings haven't completely disappeared. I do think they are fewer and farther between, but they are not gone yet. If I had to decide now, I don't think I would repeat the procedure. But let's give it a few weeks to see what the real improvement is.

It wasn't really pain I was hoping the epidural would relieve. The medication change in early May did that. It was the lingering nerve damage, which left long enough will become permanent. I want to be able to lie down beside my girl at bedtime, I want to brush my teeth, I want to pass the potatoes without feeling a zing up or down my back. That's all I'm asking for. We will see if I get that.

Working to Stay Ahead of the Pain

I think I've mentioned in the past that I am a patient at my local hospital's Pain Clinic, here in Ottawa. Because my spine fractured in several places before I even got my breast cancer diagnosis, one of the first things my medical oncologist tackled was getting my pain under control. That's where the wonderful nurse Gini comes in.

Gini's focus is on the palliative side of cancer care, relieving the pain. She saw me before and after my pelvis broke and put me on the waiting list for the new Pain Clinic. Before long, my pain had receded to the point that I no longer needed the pain pump full of Dilaudid. In fact, it was putting me to sleep as I ate breakfast! She kept me at the clinic, although my pain was manageable. I think she had a feeling...

When I saw Gini at the clinic in early February, things were so stable we decided I didn't need to come back for three months. Unfortunately, I didn't realize the effect some treatment changes would have on my pain in the interim. In late January, after a short chemo break, I was switched to daily Tamoxifen pills. My late January CT scan found a tumour on my right femoral neck that put me at risk of fracture and was subsequently treated with radiation. In March, I started a double-blind clinical trial where I was either continuing my bone-building Pamidronate treatment (but every four weeks instead of three) or I was getting Zometa, a similar drug. Put them all together and my pain, or rather my pains, increased. I was taking long-acting hydromorphone contin (a narcotic), Lyrica (for nerve pain) and Naprosyn (an anti-inflammatory) as well as hydromorphone (AKA Dilaudid) for breakthrough pain. I was taking enough to address the bone and nerve pain caused by my tumours and fractures, as well as the pain of chronic problems I have with my jaw and wrists. However, by the time I returned to the Pain Clinic in early May, I was taking several doses of Dilaudid for breakthrough pain each day. I returned to wearing my bite guard at night, as well as my wrist braces. Something had to change.

The young doctor I saw took the time to fully understand my history and the pains I was now experiencing. She consulted a senior anaesthesiologist and returned with a proposal. First, we adjusted my medication, increasing the Lyrica dose and changing the hydromorphone contin from twice to three times a day. Second, she proposed that I return at the first available appointment (early June as it turns out) to have a caudal epidural.

With the aide of a skeleton, she and the senior anaesthesiologist explained that a needle would be inserted in my tailbone and a catheter would be fished up my spine to where my compression fractures occurred and the pain relieving steroid would be released there. The procedure is safer that a traditional epidural for labour. The tailbone injection site is farther from the spinal cord and therefore less likely to cause an injury. Also the placement of the catheter will be guided by X-ray. The relief from this type of nerve block can last as long as six months, generally less than that for cancer patients.

I learned about nerve block's from one of my favourite bloggers, Scorchy at The Sarcastic Boob.  Her recent posts, "Rear View Mirror" and "Paincation Redux" tell her tale of pain and relief and explain the nerve block she gets (it's a little different from the epidural). Thank you, Scorchy for introducing me to the nerve block! It meant that when I went to the Pain Clinic I knew there were options. I didn't have to live with pain. And living is what I'm trying to do.

I Spoke Too Soon

Uh-oh!  I spoke too soon about having minor side-effects of Round 16 of chemo.  Nausea just started.  I'm feeling pretty terrible, walking around with my shoulders slumped -- like my dramatic neice who is turning three.  I'm dragging myself to cook supper, only because my Sweetheart has come down with a bug.  I don't really want him infecting my food.  I can't risk catching his cold.  Plus he's exhausted.  He hadn't yet fallen asleep last night when the earthquake hit at 4am.  Mercifully, I was sound asleep.

So for my nausea, I have taken a dose of my Stematil tablets.  I can feel that it's starting to work; I only feel crappy, not lousy.  Or is it the other way around?

Oh, and I have a sore toe.  I forgot to ask the nurse for the iced booties during the Taxol infusion.  Darn.  That's going to make it more difficult to find new shoes for the wedding.  I hope I don't have to wear my granny shoes.

Enough typing.  Supper is in the oven.  I have 15 minutes to lay down before I have to check on it and turn on the potatoes.  TTFN!

Power Outages, Post-script

When I posted my "Power Outages, Cancer-Style" blog on Facebook, my friend Pearl brought the Spoon Theory to my attention.

If you have ever struggled to explain or understand the limits of living with a chronic illness, like cancer, colitis, endometriosis or fibromyalgia, you need to read this post about the Spoon Theory.  The Coles Notes version is that when you live with a chronic illness, your daily energy is limited, like a handful of spoons.  Each activity you undertake is broken down into a number of strenuous tasks that cost you spoons.  Getting to work in the morning isn't one step, it's at least five.  By the end of they day, you don't have any energy (spoons) left.  And if you do too much, as I sometimes do, you use up tomorrow's spoons.  It is a terrific analogy.

Oh, how I can relate!  I remember last fall the time that braiding Lena's hair took so much out of me that I had to sit down and throw up.  All last winter, after taking a shower, I would have to lay down for twenty minutes.  Recently, my pain nurse advised me to take my pain medication before trying to cook supper, to get ahead of the pain.  I have to think about whether I can handle the Gentle Yoga class.  I enjoyed it yesterday, but laying down on the mat was even tougher than getting up off it.  I didn't expect that.

The point I really want to make is that living with a chronic illness is different from being healthy in ways that I'm still coming to understand.  Whether you are struggling to understand someone with a chronic illness, or you are the one:  be patient.  It takes some time to get the hang of it.

Power Outages, Cancer-Style

Yesterday, I heard cancer fatigue described as a "power outage."  The term hit me. That is exactly how it feels.  The fatigue hits out of the blue.  You can be quite active, and have plans to do more, when all of a sudden you just NEED to lay down, and then you're out of commission for a few hours.

I had a power outage last week, before chemo. I had had lunch with a good friend and picked up groceries on the way home.  Then I puttered for a bit.  Just when I was about to lay down for a rest, my Sweetheart asked if I could make supper early, so he and the Bean could carve the rest of the jack-o-lanterns. Uh, sure, I said. Big mistake. By the time supper was ready (and all I had to do was reheat a couple of things), I was drooping at my plate. I laid down on the couch as soon as I finished eating. I tried to read some blogs on the laptop, but my eyes kept closing. Next thing I knew, I had slept for two hours! That is a cancer power outage.

Last round, I had a mental power outage. It was the day after chemo and I had to pick the Bean up after school to take her to an appointment. I screwed things up from start to finish. I went over to a neighbour's and got into my mind that I just needed to pick Lena up at the bus stop. Sweetie called me in time to make it to the school as planned. We were to pick up a vegetable for supper on our way home. Well, we poked around the mall longer than we should have, got caught in traffic and ended up at a different grocery store than where I aimed to go. In short, we came home with a vegetable after Sweetie had finished making... and started eating supper. Neither of us was happy with the way things turned out. Bad night.

Power outages like this, mental and physical, make me worry about my ability to work in the future.  The Bean pointed out that the power outages come out of the blue, making it difficult to stick to a work schedule.  What will the future hold?

Round 16

Amazing.  On Friday, I had my 16th round of chemo.  Again, I had a dose of Taxol, with Herceptin and Pamidronate (for my bones).

I haven't posted much about my chemo in a while for two reasons.  One is that, for a number of reasons (not readily apparent to me), I wasn't scheduled for chemo at the end of September.  Then my next chemo was delayed to a Monday due to a mixup about when we returned from Disney.  I had just more than a five week gap between treatments.  The up-side of it was that I'm on a new three-week schedule that doesn't have me getting chemo the day before my nephew's wedding in Calgary.  I am very glad that I can go with my family to the wedding.  In addition to a family reunion on my husband's side, it will also turn into a high school reunion with the same BFFs who came to visit me last November for my birthday. 

The other reason I haven't blogged for a while about my chemo is that it's going quite well.  Knock wood.  This round, I had very little in the way of side effects.  There was no nausea.  I had less fatigue than usual.  The only real problem is that Taxol can give you diarrhea, while the stomach medicine Zofran can cause constipation (as can my pain medication).  This round, I was able to experience both. 

Also, sometime in the last couple of weeks, my swelling went down.  I could wear my wedding rings for the first time in nearly a year!  My watch is now spinning around my wrist in a very annoying fashion.

So the chemo itself isn't hitting me too hard, but I realize that what has depleted my batteries is the fact that I've been on chemo for a year and had cancer for a year.  I am coming to realize that I'll ever be the same. 

More on this, in my next installment, "Power Outages, Chemo-Style."

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!

What the Future Holds

I may have mentioned in previous posts that I understood that if my tumours continued to shrink, I might get a break from chemo this fall, while I would continue with the drugs Herceptin and Pamidronate (the cancer-stopper and bone-builder, respectively). I knew that because I have advanced breast cancer that I'd be on and off chemotherapy for the rest of my life.  Apparently it will be more "on" than "on and off."

Last Friday, Geoff and I met with my wonderful oncologist to get the results of my latest CT scan.  We got good news. The tumours in my liver continue to shrink. They are still numerous, but under 1cm in size, except for one. That last large tumour has continued to shrink and is now about the size of the end of my pinkie finger. By the way, my blood tests for some time have shown that my liver is functioning well despite the tumours.  I figure that if my liver can live with cancer, so can I.  The tumours in my bones appear to be stable; no better, no worse.  Contrary to what I was expecting, there were no new fractures. I believe the CT looked at my breasts too. The results didn't give any measurement of the original breast tumour. I don't know if that means it's completely gone or if they just didn't measure it.  It doesn't really matter.

My oncologist reminded me that Stage IV breast cancer is a chronic disease. Like other chronic diseases, such as diabetes and even depression, medical treatment doesn't take a break. He also explained that the unfortunate reality of breast cancer is that, eventually, each chemo medicine stops working. He hopes to get as much benefit as possible from each chemo treatment.  So, I will continue to get Taxol every three weeks, "as long as it is working and it is well-tolerated."

I have to be honest, I was disappointed to get the news. Somehow, I'd dreamed up a chemo-free future where, for one thing, it might be easier to return to work. I have to rethink things. I have to accept that the chemo will continue. So every three weeks I will have a few days where I feel tired and nauseous, and have sore fingers and toes (my weird side-effect).  I don't know how well my hair will continue to grow.  My chemo-brain syndrome will continue to interfere with my speaking.

I get a tiny break though.  No chemo on September 28; I start again October 12.  That means I won't be recovering from chemo when I do the Run for the Cure on the 30th, that I can attend a retirement party on the 28th, and that my nephew's wedding won't be on a chemo weekend.  See?  All good.

"Don't Count Spots!" and Other Friendly Advice from my Oncologist

I saw my oncologist yesterday and he took the hammer out to get it through my head to stop worrying.  And I have been worried.  I have a lot of tumours in my liver and bones.  Unlike some Stage IV women with a single spot here or there, mine are "numerous."  The radiologists can't even count them all.  And what if they move into my lungs or heart or brain?  Dr. G said, "Don't count spots!"  Stage IV is Stage IV as soon as there is one tumour outside the breasts or lymph nodes.  There is no Stage IV and a half.  No Stage V.  It's Stage IV and the treatment is the same whether it's one spot or "numerous" ones.  I need to relax...

He also clued me in to some more of the side-effects I've been suffering.  My runny nose and constantly tearing eyes?  Chemo.  I thought it was my allergies but no... which means it's not going to stop anytime soon.  I can try artificial tears, or if necessary, the doctor can give me steroid eye drops.  And the swelling I feel on my back, near the latest fracture, is just swelling.  That's common after radiation.  By the way, my back is still "tanned" and itchy from the radiation I got in November.  I had no idea it would last so long.

I asked my doctor if it was OK to try to lose some weight.  He was ambiguous, to be honest.  It sounds like it's not necessary for me to keep on extra weight as an insurance policy -- because if I stopped eating suddenly, he would treat it right away.  On the other hand, women gain weight with breast cancer, and in truth I had lost weight since December, back when I was at the worst of the ankle and leg swelling.  I think the bottom line is that I can do what I want.  Next question is for me:  do I want to work at losing weight?  Hmm.

Next, the big question:  could I have a drink?  Because of my abnormal liver results and "numerous" tumours, I haven't had a drink since the early Fall.  And some days I really would like one.  Dr. G said "absolutely!"  My liver results are now normal, despite the tumours.  I can have one to two drinks a day if I want.  That would be more than I need, but now that the sun is shining, I am thinking of sitting in the yard with a cold glass of hard apple cider.  Mmm.

About that new chemotherapy treatment that has been in the news, TDM1, he says it's available in Ottawa.  Clinical trials are continuing; approval should come relatively soon.  He'll look into whether and when I might get it.  That said, he did agree that it makes sense to continue the Taxol, Herceptin, and Pamidronate combo as it is still working.  He says all good doctors have Plan B and Plan C at the ready.  And he's taking good care of me.

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."

Losing Your Hair Hurts

When my hair started to fall out again on Saturday it hurt emotionally.  Since my hair had started to regrow this winter, I was close to going wigless.  Saturday's discovery meant that one piece of normalcy in my life had been snatched from my grasp.

By Sunday, I experienced a new pain, on my scalp.  Various parts of my scalp were sore when hair moved or touched a pillow.  Today, before showering (and plugging the drain), I pulled off as much of my hair as I could.  It took a long time, about my limit for standing. And it hurt, particularly on the top of my head.  Washing my hair was awful.  I stood under the shower wincing, nearly whimpering, as the water hit my tender scalp.  And even more hair fell out, short little bits that I could tell were from the new growth -- little guys that were just getting their start in life.

Maybe by the fall, I'll be off chemo and my hair will grow back for good.  Until the next round of Taxol.

P.S.  We saw my oncologist today and in response to the hair loss and aches and pains (which I hadn't realized were Taxol related), he is going to reduce my dose for Friday's chemo.  He's always trying to balance my quality of life against getting the cancer under control.

I Guess I Should Have Known

Warning:  this is definitely a TMI (too much information) post.

I guess I should have noticed that when I shaved my armpits the other day there wasn't much to shave.  I can hardly see without my glasses, but I should have known.  And this morning I should have noticed that my leg hair stubble wasn't very long considering I hadn't shaved in a couple of days.  But I just figured it hadn't been so many days.  And yet, when I washed my hair this morning I was shocked that it fell out in my hands. 

I was actually planning to go to out for breakfast without a wig for the first time since the fall.  I thought that my hair was growing back really well.  I almost went for a trim when Geoff went to get his hair cut yesterday.  But I should have known.

I thought I wasn't having any side-effects from the switch in my chemo dose.  Remember, the doctor combined my Taxol into one "serving" rather than splitting it over the course of two weeks.  At first I thought that doubling up might give me greater side-effects like nausea or fatigue.  But nothing happened after chemo, so I thought I got off lucky.  I should have known.

I wonder how comfortable my wigs will be now that the warm weather is here?  I wish I wasn't going to find out.

New Treatment Approaches for May

I went to the Pain Clinic on Tuesday, where they were able to check out my MRI results and let me know about the new compression fracture, which explained the pain in my back.  The Clinic gave me a new prescription. This time, for Naprosyn, aka Aleve, three times a day, with meals. I had stopped the Celebrex last month after it, paradoxically, made my joints feel swollen. The last straw was when my knees felt weak going down the stairs -- if I fall down the stairs now, I'll end up in a million pieces! I went back to ibuprofen until last week's appointment at the Clinic switched me over to Aleve. It took a couple of days to make a noticeable difference, but it's working now. It makes it much easier to get up of the couch to get another cup of tea!

Further to the April test results, on Wednesday, my oncologist has switched me to chemo once every three weeks. They had previously been splitting my dose of Taxol over two weeks. As of last Friday, I was given the full Taxol dose in one sitting.   I was a little concerned that my side-effects would be greater, but so far they have been minimal.  On Saturday, I had the standard moon face with hot, red cheeks.  My stomach felt a little iffy Friday night and Saturday night, so last night I took my Stematil.  I was expecting to feel quite tired today, more from Lena's marathon birthday party yesterday than from chemo, but I feel well.  I'm moving around well, without pain.  Feeling steady on my feet. 

I'm having one of those moments when I feel "like myself" and it feels good.

Update: February 15, 2012

I'm overdue to update you on last Friday's chemo session.  Plus, I met with my oncologist this morning and got some unexpected news.

First, chemo.  It went pretty much the same way the last couple of sessions have gone.  The chemo itself is fine.  Afterwards, though, I end up tired and lose my appetite.  I haven't eaten much since Friday.  Even my favourite things, like Saint Hubert chicken and cream of wheat, I could only eat a bite or two of them.  My cousin Sam mailed me some of my grandmother's best cookies, genetti.  Even the genetti I have to eat slowly to get them down.  It's a shame.  Still, considering how difficult chemo is for so many patients, I know I'm getting off easy.  I can't really complain.  And that is why my appointment with my oncologist was somewhat surprising.

His focus is on maximizing my quality of life while controlling my disease.  He wanted to get my liver metastases under control and then reduce my chemotherapy.  The last CT scan showed that the liver mets have shrunk significantly, but it appeared that the bone mets had grown.  My oncologist pointed out that it takes months for bone mets to heal, and for the healing to be visible on a scan.  His interpretation of the CT results is that the bone mets may have grown while my chemo was interrupted in November/December, but they are probably responding as well as the liver mets are -- we just can't see it yet.  He's now going to reduce the amount of Taxol I'm getting by 20% to improve my quality of life (that is reduce the extent of tiredness and lost appetite I'm experiencing).  On another note, he will be reducing the amount of steroids I'm getting with the Taxol, which should reduce my swelling.

In a couple of months, he'll repeat the CT scan and if the results are good, he expects to cut my Taxol to once every three weeks, rather than twice.  Eventually, if my results remain good, after another couple of months, he'll cut the Taxol entirely and stick with the Herceptin for "maintenance."

He also mentioned that the liver is the most important organ in my treatment, the one he was most concerned with controlling.  This makes me feel much better, given the dramatic results I had on the liver mets.  I had been worried about the bone mets, but his comments this morning made me less concerned.  I just have to be more patient with the bone mets.  The fact that my pain levels are greatly reduced is probably a more accurate reading on my bone health than the CT scan was.  That's good.

Now that I'm awake, I Can Fill You In

Over the last month, I have certainly reduced any sleep defecit I had!  Honestly, I have had days where I napped for hours in the afternoon, slept on the couch all evening, had a normal night's sleep, and then fell asleep reading the newspaper at breakfast.  You have to agree, it's a bit much!

Finding a solution hasn't been easy.  Our working theory has been that my pain level has reduced enough that the level of hydromorphone I was getting in the pump was causing me to get drowsy.  It seems that you can tolerate high levels of this drug withough side-effects if you have high pain levels too.  But once they drop, weird things can happen.  In fact, when they first put me on the pump in the hospital, the levels were so high that I was sleepy and hallucinating.  Truly loopy.  Lately, just sleepy.

Realizing that my pump was set at a pretty low continuous dose, my pain nurse suggested we remove the pump and replace it with the right doses of both continuous and breakthrough levels of oral hydromorphone. We've spent the last couple of weeks adjusting the oral medications. The trouble is, I'm still drowsy.  And I've had more pain, especially in the morning.

My pain nurse, who is fabulous, has referred me to the Complex Cancer Pain Clinic in the hope that it will offer new alternatives that will help me.  Here's hoping.