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 -- Emergency?

None of us wants to go to the Emergency Room, but Tuesday night I was pretty sure I should. A sore erupted on the edge of my Port-a-Cath. That's not just unsightly. The catheter could take the infection straight into my bloodstream. I've been septic before and don`t want to risk it again. (Can you guess I spent some time with Dr. Google while waiting for a home care nurse to return my call?)

I have had persistent bruising at my port site, particularly to one side. It just wouldn't disappear between treatments, which are every three weeks. In fact, at my last treatment, I'd discussed it with my chemo nurse. She didn't have any advice for me. Earlier this week, I noticed that there seemed to be a small sore over the bruised area. I showed it to my Sweetie and we both said "hmm?" We were on our way to Montreal for a short visit and thought nothing more of it. Then when we returned to Ottawa I took a closer look at it after getting out of the shower. It was now clearly infected. The home care nurse wasn't sure what to make of it and wouldn't be able to see me until midnight or later. I called my family doctor's after-hours service and that nurse was more definitive: I should have a doctor examine it within the next four hours. Great.

We asked my daughter to hastily repack her backpack for a spur of the moment sleepover at my mom's and off we went to the hospital. Four hours later, the ER doctor assured me that I had no signs of sepsis, but certainly needed antibiotics, starting with an immediate double dose. He also suggested I give the Cancer Centre a look at it the following day. The nurse dressed the wound with antibiotic cream and gave me enough Cloxacillin that we didn't have to stop at the pharmacy on the way home. Instead we were allowed a few hours of sleep.

The next day, my Patient Designated Nurse put me in touch with Sheryl of the hospital's Port Team. She was able to meet with my when I came early for an unrelated specialist appointment (verdict of that after three months and two hours of waiting: no hip surgery). Sheryl has arranged for daily nursing to change the wound dressing. And she broke the news that my Port-a-Cath probably needs to come out. I now have an appointment next Tuesday to have it examined. It sounds like the infection needs to have subsided before they will risk the surgery. Whether they will put a new port in at the same time, I don't know. All I can tell you is that I`ve learned a few things in my ten months with my Port-a-Cath:

• The ones on the left side have more problems.
• Bruising isn't normal.
• And sometimes they erode the skin over top them.

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.

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."