Tuesday, 3 February 2015

Back to Chemo

Where has the time gone? I don't even have an excuse for not posting since October. Well, a little excuse. I was scared to face the truth.

Like I mentioned in June, my breast lump grew back. Since then, we have been talking a lot about it, considering options. Initially my oncologist suggested that if the lump was problematic, the options were surgery and radiation. I saw my radiation oncologist in the fall. She wasn't inclined to radiate the breast unless it was causing a lot of pain. I had pain, but intermittently, and mild. Later in the fall, one of the physicians who supports the oncologist felt the lump and suddenly, a chemo trial was on the table. It was a trial with Xeloda and either Tykerb or a new anti-Her-2 drug. I will admit the prospect of chemo surprised and scared me. I didn't expect that, since I've felt quite positive about my experience with Taxol at the beginning of my treatment. Taxol and Herceptin was my first line of treatment. After a year of that, I took a short break and then started Tamoxifen with Herceptin. The Xeloda trial required two previous lines of treatment, I learned that only chemo counts as a line of treatment in the trial world, so I was ineligible. Tamoxifen didn't count.

The physician ordered another round of scans. I did a bone scan and the results showed stability in my bone mets. I was starting to think the breast mass was simply necrotic (dead) tissue. I wanted a biopsy before stating a new treatment. Then we got the CT scan results. Not only had the breast lump returned, it was continuing to grow. And, there was a second breast tumour I hadn't noticed. And there was some thickening in the abdomen that could represent new small tumours. And there is a mass next to my uterus. Chemo it is!

Ten days ago, I started Vinorelbine, with Herceptin. Clearly systemic treatment is required. Vinorelbine, which I like to call vanilla bean, is known to have milder side effects than chemos like Taxol, for example. So far, I've had some indigestion and constipation. So far, my hair hasn't gone anywhere, but it is too soon to tell if I'll lose it. I pray that the vanilla bean will be effective, with few side effects. I could use your prayers as well.

I will be in Vinorelbine for as long as it works and I can tolerate it. An ultrasound is being scheduled to investigate the uterine mass. And, I hope, I will get back to blogging, both here and on my family history blog. It has been too long between posts. Glad to be back.

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.

Saturday, 18 October 2014

Three Years

It was three years ago today that Geoff and I sat down with a surgeon at the breast clinic and got the results of my biopsy. I was diagnosed with stage IV invasive ductal breast cancer with metastasis to my liver and bones.

The average life expectancy for someone with stage IV breast cancer, particularly with metastasis to the organs, is three years.

Three years.

But I am not a statistic.

Friday, 3 October 2014

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.

Saturday, 6 September 2014


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.

Sunday, 29 June 2014

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.

Wednesday, 21 May 2014

She's Gone

My mom passed away suddenly on May 13, early in the morning, before Dad and I went to visit. Her vital signs were fine at shift change. An hour later, the nurse found she was gone. I was so shocked, I thought it had to be a joke, a terrible joke. Of course it wasn't. In the end, despite those conversations about "goals of care" Mom went on her own timeline, or rather God's. She couldn't be resuscitated because the hospital staff didn't know she was dying. They think she went quick. My God, I hope so.

The last week has been a blur. I felt like I was at work again as Dad and I were in meetings all day for days planning the funeral. Then there was the flurry of preparations, like baking, making a collage and receiving visitors. Mom was a wonderful baker. In her honour, friends and I baked cookies, biscuits, loaves and squares for the visitation Monday night. My cousin flew up from Delaware -- well, you can't fly out of Delaware, but that's another story -- and my godmother, who was Mom's best friend, and her daughter, who was Mom's goddaughter, came. Mom's family wasn't able to come, but sent flowers. 

There were a lot of flowers. Beautiful arrangements and sprays. Vivian of Vivian's Flowers on Merivale Road did a terrific job, even when her supplier sent the wrong colour snapdragons and the holiday weekend made replacements impossible to get. I found myself taking pictures of the arrangements. I was compelled to. Do you know why? I felt I had to take pictures of the flowers to show mom, since she wasn't there.

There were more photos, of the casket, of Mom. Dad wanted me to take them. So I did. I am trying to do all I can to help a Dad deal with Mom's death. Oh those words are so hard to say -- "mom's death." So final.

Without Mom's family, I wasn't sure what or who to expect at the visitation the night before the funeral. We did it for us and for tradition. My friends didn't let me down. Old friends, co-workers and neighbours came, people who have helped support me in my illness. New and old neighbours of Mom and Dad also came.

The funeral was yesterday. It was harder. A smaller crowd, but a good crowd nonetheless, came to support us. Sweetie, the Bean and I did readings at the funeral Mass. I could barely read the last few lines through the tears. I thought I could do it easily enough. I was wrong. I don't think I'll do it again.

Now, like finishing cancer treatment, I need to find a "new normal," one that doesn't involve getting to the hospital every day to visit Mom. I will call Dad every day. I will helping deal with mom's will and finances. We will have to go through her clothes and effects. Then there is the question of how long he keeps the house and the job it will be to downsize, particularly to a one-room retirement home suite. So, it isn't really over. In fact, the grieving has barely begun.