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.
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.
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.
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.
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.
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.
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?
I got good news today on the CT scan I did late last week: stable. That's the magic word. I am relieved, more than you know. The thing is that I just don't know if I could handle hearing my cancer had spread. I could stand chemo, but not more bad news.
Mom is still in the ICU, paralysed from the neck down and unable to communicate. I try to go to the hospital every day. It isn't easy to take a day off, but I do here and there, like Monday when we had had freezing rain all night.
I expect that I will be posting very, very infrequently for the next while. That is just the way it has to be.