I had planned to blog on the morning of my 55th birthday, which was yesterday, but instead I spent 3 hours undoing the damage done by some incompetent hackers, who managed to break my website, yet failed to correctly display their links to information on a wide variety of pharmaceutical products. I still have their .htm files in the backup I made before upgrading WordPress and doing a thorough cleanse of my server space. So if you are looking for questionable medical information, and haven’t received enough yet in your spam folder, I’ll be happy to send you some junk files.
I had hoped to blog a bit more this past year, but ended up not doing so. I thought about it a few times, but I really didn’t want to be a “cancer blogger”.
And this year has been dominated by cancer, and cancer treatments, and treatment side effects and after effects.
When I last blogged, I was nearing the end of 6 weeks of radiation treatments. They gave me a month off between radiation and chemo so that I could heal up a bit before the really nasty stuff. So what did we do? We moved our home of 10 years.
My radiation oncologist warned me “No heavy lifting.” Just what you want to hear before you move! And I will leave you to guess whether that last sentence was sarcastic or truthful.
I did lots of *light* lifting, though. I handled the packing and unpacking of boxes, while Barry and my dear sister, bless her ever-lovin’ heart and strong biceps, handled moving the boxes to and from the houses. TROSA moving did the really heavy lifting.
What my radiation oncologist should have told me was “don’t do a lot of small repetitve movements where your arm rubs against your radiation burns and iritates the heck out of it so the skin falls off and you spend the first week in your new house walking around topless and taking the oxycodone they gave you after surgery because you will be in more pain than you were after two surgeries.”
But she didn’t tell me that. Oops.
The move has been totally worth the pain, though. I love our new home. More spacious, beautiful gardens, and best of all, a short walk to the Eno River. Some days I walk down just to “say hello to the river”. Other days I’ll take the unmarked trail that connects with Dunnigan’s Trail, and from there to all the trails in the Cole Mill section of the park, all the way out to Bobbitt’s Hole. The wildlife is wonderful. When the river is low, it’s like an aquarium; you can see all the fish and snakes and turtles swimming under the surface. Lately, there’s been a plethora of tiny frogs hopping across the trails. There are occasional glimpses of herons flying over the river, or owls swooping through the trees. Lots of deer, who I would much rather run into in the woods than in our yard, where they have feasted on hostas, day lilies and gladiolus.
Chemo started on October 7. I had four treatments, three weeks apart, so my final “cycle” ended just before the new year. The treatments themselves were not bad. It would take several hours on a Friday afternoon, including time waiting for my blood draw, then waiting again to see the oncologist, then waiting again for the actual treatment. Barry was by my side, and we amused ourselves during treatment with a travel Scrabble board.
All in all, the three months were not as bad as I feared. I only passed out and hit my head on the bathtub once, and only threw up once (immediately after the passing out bit. It was an eventful morning). The first week of each cycle I just felt generally yucky, like I was a little bit carsick. I’d live on english muffins and vegetable broth and juices for a week, during which I would drop 5 pounds, which I’d gain back over the next two weeks. The weekend immediately after treatment I felt OK; about noon on Monday I would feel the fatigue descend. From then until about noon on Thursday, I would hardly get up off the sofa. I was too tired even to read or watch videos most of the time, yet I didn’t really sleep much, either. But it was a beautiful autumn, and watching the leaves fall in our front yard was amusement enough.
The fatigue would improve after that, but not in a linear fashion. I would feel OK one day only to be exhausted the next. Rarely would I feel anything like a normal level of energy. I followed the oncologist’s recommendation that exercise is the best way to battle fatigue. On bad days, my exercise would consist of ten laps through the loop of the living room, dining room, kitchen and front hall. On a good day, I might make it all the way to the river on Dunnigan’s trail. Most days, just making it down to our neighborhood river access–essentially, walking around the block–was as much as I could handle.
I was instructed to head straight to the hospital if my temperature reached 100.4, as chemo wreaks havoc on the immune system and leaves the body open to some very nasty infections. I was lucky, though, that my white blood cell count stayed in normal range throughout. My temperature did rise as high as 100 one night, so it was quite a relief when it backed down to 99 and spared us a Saturday night in the E.R.
My red blood cell count took much more of a hit. By mid-December, I was out of breath just climbing the stairs. My final blood test showed not only that my red blood cell count was down, but also that my red blood cells were enlarged. I assume the oncologist chalked that up to the effects of chemo; as it turns out it was an early warning of a problem I’d only discover later this year.
Once the last cycle was complete, I looked forward to my recovery, and to growing stronger every day. But it didn’t happen. I walked the hill near the river one day, and had to stop frequently to catch my breath. Then one night, out with Barry and his daughters, I found myself catching my breath simply trying to talk loud enough to be heard over the not-terribly-loud music at Bull McCabe’s. We walked down to the Pinhook, where I found myself coughing so much I could barely catch my breath. Barry and I ended up sitting in the car in a parking lot near the hospital waiting to see if it would subside on its own, or if I needed to go to the E.R. Fortunately, the spasm calmed down and I was able to make it to my primary care physician the next day. She gave me a nebulizer treatment and a prescription for a short course of prednisone, on the assumption I was having a flare-up of asthma, and an order for a chest x-ray at a nearby diagnostic facility. I got the chest x-ray and was on my way to pick up the prescription when I got a phone call from her nurse: don’t fill the prescription for prednisone…we’re calling one in for antibiotics. You have pneumonia.
After a course of antibiotics, I felt no better, and another chest x-ray showed no improvement. I was given a second course of a stronger antibiotic. I began to feel better, my lung sounds and blood oxygen and peak air flow improved, but yet another chest x-ray still showed problems. A month went by, and another chest x-ray, and although my symptoms were much better, the x-ray was still problematic. My PCP conferred with my oncologist, and I was scheduled for an MRI. The conclusion was that my lungs were OK but I have some inflammation/scarring from the radation which is not interfering with my breathing, but appears as cloudiness on the x-rays.
I hoped at this point that I would be able to start on the road to real recovery. I set myself an aggressive workout schedule: the Couch-to-5K program on the treadmill 3 days a week, working up to an hour hike on the in-between days, and a longer hike on Sundays. I completed week 3 of the C25K program, with two one-hour hikes during the week, and hiked 3 hours on Sunday, all the way to Bobbitt’s Hole and back.
Two days later, the fatigue smacked me down. I felt as bad as I had during some of the worst days of chemo. Querying some other breast cancer patients on the breastcancer.org forums, I discovered that what happened to me is not unusual. If you push too far too fast, you can actually set yourself back. I was back at square one, dragging myself to even walk around the block. Everything I read about cancer-related fatigue hailed exercise as the best treatment, yet I found that the more I exercised, the more tired I became.
Concurrent with these happenings, I was also having pain in my ribs. I started physical therapy for truncal lymphedema, a common side effect of having lymph nodes removed. I also had a mysterious pain that kept me from lying flat on my back; after a rib x-ray ruled out metastasis to the ribs, it was assumed I was having a flare-up of costochondritis, which is an inflammation of cartilage in the rib cage. Both the lymphedema and costochondritis symptoms seem to have faded with time, I’m glad to say.
Yet the fatigue would not fade, at least not completely. I gave myself the gift of getting enough sleep. While I had pneumonia, I would sleep 12 hours a night and sometimes nap during the day. But even after that, I found I needed 9 or 10 hours per night, and would still be tired and unfocused during the day. I experience chemo brain as an inability to focus my attention for very long, as well as occasionally lapses when I will lose a word mid-sentence.
I had my follow-up with my medical oncologist in May, and she did not think I should be feeling so much fatigue 5 months out from treatment, even with the delay of a month of pneumonia. She recommended that I see my PCP for a thyroid test.
The good news is that my thyroid is fine. The bad news is that I have pernicious anemia.
The clue should have been those enlarged blood cells back in December. My B12 level was at the very low end of normal, but even that is enough to cause fatigue, as well as many of the mental symptoms that are identical with chemo brain. Also, exercise can deplete B12 levels, which could be why exercise was making me feel worse instead of better.
I went through a month of weekly “loading doses” of B12 to get my levels back up to normal. I’m now on monthly shots for the rest of my life. I am lucky to have caught it before the levels became too low, as an unchecked B12 deficiency can cause permanent neurological damage. In retrospect, I suspect that the peripheral neuropathy that plagued my mother may have been caused by a B12 deficiency…I know she was getting shots, but have no idea how long she was on them or what symptoms led to her diagnosis.
As of now, I’m cancer-free, with my next check-up in December. The fatigue still plagues me, although I’m able to exercise more, just not very vigorously. I’m taking on more clients, and meeting their deadlines, although not meeting my self-imposed milestones for my own business plans. After two years of not working full time, I look forward to the day when I will have the energy to sit at my desk for eight hours and be so focused on what I’m doing that I forget to eat lunch. I don’t think that day is too far off. But it’s not here yet.
In happier news: Barry’s eldest daughter gave birth to our first grandchild in April, an adorable baby girl who is, of course, the prettiest, smartest and most charming baby that has ever been born. Her mom is in love with her, as well she should be. Not having ever had children of my own, being someone’s grandmother is a special joy and privilege that I cherish every day. Alas, their plans to settle here in Durham did not work out as planned, so they returned to Minnesota, where we visited them earlier this summer. Our son-in-law has started a master’s program in occupational therapy; Barry’s younger daughter is studying sociology, and living in our old home with her partner, who is studying for her doctorate in political science. I am thankful and joyful every day that I am married to Barry, even more than I demonstrate to him with my daily kisses and hugs and overly cutesy expressions of affection that he is kind enough to tolerate. Being a part of his family is a gift.
The biggest surprise of the year was a call from Comic-Con, the big comics book convention, that my father was being awarded the Bill Finger Award for Excellence in Comic Book Writing. My sister and I accepted the posthumous award. She and Barry and I got to spend a few days in San Diego, courtesy of Comic-Con, and got to attend the convention. It was wonderful to have his work acknowledged by his industry, and to meet people who truly appreciated his talent. I only regret that his biggest fan–my Mom–had not lived to see him honored.
My goal for this year is to find my “new normal”. I know it will still involve a lot of work, but I’m hopeful it will be less stressful and more lucrative (don’t we all?). I also want to spend more time keeping the house neat and clean and comfortable, and learning how to become a competent gardener. I hope to be able to hike more, without dragging my feet up the hills like I do now. I haven’t even mentioned my bum shoulder(s); hoping to get those in working order so I can kayak again, too. I’ve been spending more time on creative pursuits, and if I’m lucky I’ll be able to blog more about that and less about my health.
Some people live through cancer and completely change their life afterwards. I suppose if I had unlimited funds, that would be feasible, but for now, the need to have an income is still there, no matter how much I’d rather spend my time doing kumihimo or practicing calligraphy. But in the back of my mind is the knowledge that as much as I want to put this experience behind me, the other shoe could drop any time. Even if this doesn’t kill me, the possibility of recurrence, of more surgery, more chemo or radiation, is always there. I could lose another year to this. It’s not possible to live for today and also save for retirement; to cherish every moment and also get the taxes done; to eat dessert first and also follow an anti-cancer diet. The best I can do is enjoy the moments that are truly enjoyable, and be glad I’m still here for the others, too.