Four Years Later
I’m still alive! And active, living my life. As far as we know the cancer is gone and has not come back. If there are cancer cells still lurking somewhere in my body they are not active enough to be detected.
I was followed closely for the first few 'dangerous' years when there was a greater chance of the cancer coming back. I went in for tests and appointments every three to six months. That first year was up in the air for me, I grabbed as many personal meaningful moments as I could afford, partly with no thought to the future, but also partly with the idea that I would have a real, new future. As time went by and the one year, two year, and most significant three year milestones passed I got used to being better. Gradually as the routine tests continued without alarming results my various doctors and specialists dumped me. I can tell you that it’s a good feeling when your doctor dumps you, it means they truly believe you don’t need them any more. It means you are out of near and present danger.
The radiologist was the first doctor to dump me. I didn’t qualify for the targeted radiation because my lymph nodes had been compromised, but the chemo and the surgery both worked so well that I did just get 'light' radiation. I had sixteen radiation sessions, spread out Monday to Friday for about three weeks, that was it. My only skin symptom was a tan on my collar bone over the area where there is a lymph node beneath it. And while it was tedius to have a mid-day appointment five days a week for three weeks I didn't have any other significant side effects like fatigue either. I continued to get stronger and recover from the chemotherapy right through the radiation treatments. One of the women from the cancer support group had her radiation treatments scheduled each day just before mine so we often got to sit and visit together while we waited. I liked her a lot and having a familiar face and new friend to talk with made the whole process much easier. On my very first visit the technician told me to really relax as they took those first measurements because then each of the radiation sessions afterwards would be much easier, I’d be much more able to find that exact position again and hold it for the duration of the radiation treatment if I was relaxed. I used all my relaxation technics for that first measurement session. And she was right. My treatments did go much faster than most. But I was less pleased about the other thing she told me on that first visit, she advised that I get out and enjoy the lovely sunny summer days while I could. And I answered, was that because once I was in radiation I’d have to be careful of the sun on my freshly radiated skin for the rest of the summer. And she told me that I’d have to be careful of the sun in the radiated area, which was from my collar bone to the middle of my chest, including my back on that side, for the rest of my life. Radiation is like spending a lifetime out on the sun, you can’t take any more sun than that without causing further problems. That was a dark moment for me. But I’ve learned to live with it, I was a bit past the bikini stage of life in any case. My summer wardrobe has changed, it keeps me covered on top and that’s the way I live now. More in the shade than before. But I’m okay with that.
The first doctor that I dumped was the plastic surgeon. I loved the idea he had for my surgery, I loved the surgery he did on me. I was so happy with it that I didn’t need any more. He had a plan for two more surgeries that would complete my breast reconstruction by giving me a new nipple. When heard rumours that they take skin from your genitals to create nipples, that was the end of that idea. Forget it! And frankly with my breast generally the correct size and shape so that I don’t have to wear a prosthetic why would I put myself through any additional surgery even if they had another less horrific way of going about it? I’ve since heard too many stories of breast reconstructions gone wrong, sometimes badly wrong, but often just wrong enough that it’s not nice to live with, but also not worth going back in for more surgery to fix it. And what I have learned is that you only have so much skin to work with, and with each surgery to fix the last surgery there is always less skin not more.
The first new doctor I got after treatment ended was the ophthalmologist who fixed my eyelids. It took almost a year for me to go through all the stages of getting to the right specialist, the right diagnosis and surgery. And after all that it was just a day surgery, they ‘tightened’ the muscles under both bottom eyelids so that the eyelids didn’t roll inward anymore, taking the eyelashes with them. It was a bit horrific, I was wide awake and wide-eyed while they cut and sewed, and I got to listen to them discussing whether or not they had matched the two eyes to each other, and felt the tugging while they adjusted the muscles. But also, it was instant relief! As soon as she did the surgery I felt that instant relief. No eyelashes in my eyeballs anymore! Finally. I didn’t realize how much of my energy had gone towards simply keeping myself from rubbing my eyes. After that surgery I got an energy boost. Part of my fatigue all along had been fighting this low level, but persistent and real physical problem. I felt better right away. Instantly.
I signed up for the after cancer weight loss program. They had us exercising together in a group for an hour three times a week, and many of the women in my cancer support group were also in this group so it was a lot of fun for us to all to dance around to music together, and nice to see each other with healthy pink cheeks, and the other two days in the week we had a dietician work with us on personalized diets according to our personal tastes, our family social customs for eating, and our treatment plans. I was encouraged to enjoy dairy, but not go below 2% fat content in order to help my bones. You need the fat in order to digest and absorb the calcium. They discouraged soya products for me, and let me tell you, soya is one of those products like sugar, it's every where in all sorts of things you don't think of as 'vegetable' - like the breading on commercially prepared fish. The program was eight weeks long and I lost a respectable thirteen pounds.
My lymphedema specialist was the next specialist to dump me. In the third year I survived an especially hot humid summer with both arms the same size when most of her patients who were at risk for lymphedema got into trouble. So while I’m still in her file and can contact her any time I am worried, basically she thinks she doesn’t need to keep checking up on me every three months, then every six months and then every year. I’ll be okay without that constant vigilance. I have no future appointments. Whatever I am doing to take care of my arm, and however my body has recovered from the shock of having those lymph nodes removed it seems to be working, and it looks like I’ll be alright. Since the days of my treatment decisions and concerns they discovered that the lymph system has a whole layer of cells just under the skin that they never knew about before. The lymphedema specialist advised me to keep up with the swimming, and also the sauna and cold plunge, water massage nordic spa sessions that I loved. Something about water seemed to be good for preventing lymphedema. Now that we know about that cell layer (they reason they didn’t discover it before is because it is so thin, it dries out quickly, and also collapses immediately when the skin and cells are cut, they just didn’t see it) we know why. Moving water pressing on your skin massages those lymph cells and also improves your entire immune system. I’ve since taken up aqua-fit too. And my life is better for it. It’s more fun and social than swimming endless laps back and forth in the pool. Laughter is also good medicine.
The latest doctor to dump me, just this year was the surgeon, Dr. B. My hero, the doctor who took me in when I was feeling lost and alone and took me under his wing and into the care of the whole breast cancer team. With him after active treatment ended it was a mammogram every year, followed by an exam. We had one false alarm the first year when they found something strange that turned out to be a mammary lymph node. I could tell as the technician showed me the image on the ultra sound screen that it was going to be okay, it was all smooth and organized, like a torpedo in it’s cradle - not wild and chaotic the way the cancer had looked. And they saw internal scars healing that first year too. Ever since then all the mammogram reports have said, no change, no change. And after the last one Dr. B told me that I don’t need to see him anymore. He says I am well protected by the daily chemo pill, the aromatase inhibitor, and that we don’t have to be so vigilante anymore. I liked him a lot, but we both smiled happily at each other when he said he was dumping me and I don’t have to schedule any more appointments with him. That part of my life is officially done. Love you Dr. B. Glad to say goodby. This the best outcome. Dr. B. Thank you. We had a happy little eye-contact dance and then just like that he was gone out the door onto the next patient, someone else who needed him.
I still see my oncologist, Dr. P every six months. I am on a daily aromatase inhibitor. It’s a ten year plan so I have six more years of this to go. Dr. P and I have settled into a more long term relationship. This regime has been proven to be very effective, 98% effective, especially with my particular kind of cancer. So, as the surgeon said, I am well protected. But this daily cancer pill has it’s drawbacks. Something about it sucks the life out of you. That is about the best way I can describe it. I felt that effect right away the first month I started taking it, and that has never left me even though my hair has all grown back now and my eyelids are fixed. I am also experiencing a constant soul suck thanks to this chemo pill. This is not listed in the potential side effects but for me it has been very real. The oncologist follows me closely because officially there are actual bad side effects; it’s hard on your bones and your joints. I feel it for sure in my joints. I feel like I’m aging at twice the normal speed.
I have kept up with the cancer group, a small portion of us meet every few months at one of local restaurants. Some of us still have active cancers, but most of us are in remission and are on either tamoxifen or one of the aromatase inhibitors, so we compare our ongoing and developing symptoms and it’s been useful. For example, all but one of us has had trigger finger since we started on these hormone therapies. So, when I got trigger finger in my thumb I pretty well knew what was happening right away even though it’s not really on the list of possible side effects, and that was a good short cut for what might have been another long process of diagnosis. And I didn't think it might be the cancer coming back, not even for one moment.
Some of the other younger women say that their hormone therapy makes them feel like they are 80 or 90 years old. All of us now feel stiffness in our joints as we first stand up after sitting for a while. The stiffness goes away after you’ve taken a few steps but it still makes you feel old. Every time you stand up you are reminded. Some of them have even quit going to movies because it’s too hard to stand up after sitting for two hours straight. They don't like to do it in public. People look at them. I’m not prepared to give up movies yet. It does take me longer to stand up at the end of a movie, but unlike the younger women I have grey hair and the people around me don't react with surprise when they see me stand up so painfully, slowly. I keep knitting and typing to keep my hands in shape, and I do aqua fit because it really helps the rest of my joints. It helps me keep moving and mobile. Luckily my bones are still good. So far my heart and blood are hanging in there too. I get a blood test every six months. It gives us, Dr P and me, an assessment of my general health and how I’m reacting to this chemo pill and he tests for cancer markers in my blood at the same time, two or three vials of blood get anaylized every six months. So, really I think I feel as secure as you can feel when it comes to being on top of any cancer recurrence. I put up with the side-effects of this daily chemo pill for that very big benefit, and the mental re-assurance that comes with it.
"Weakness and ignorance are not barriers to survival, but arrogance is." Liu Cixin, Death's End, 2010