September 2nd, 2013 · 1 Comment
Another year passed of blithely ignoring my blog! I debated closing down the account and chalking it up to yet another neglected hobby, but decided to log another birthday’s blather and put off the decision for another year.
The last year has been less dramatic than the previous two, a gift for which I am profoundly grateful. This year was less careening from one health crisis to the next and more the long, slow slog of healing. A slog that is not yet behind me, and perhaps never will be.
As I noted in my one-year-ago post, I expected that my post-chemo return to normalcy would be a few weeks or months at the most. That was what my oncology team indicated, and they are the experts, so who was I to doubt them? Even now, a year and a half out from treatment, they seem baffled that fatigue continues to be an issue.
I am baffled by their bafflement. Numerous studies—as well as the anecdotal evidence of their on-staff counselor—indicate that fatigue is a common and long-lasting side effect. According to a 2007 research study, “Approximately 30% of breast cancer survivors experience moderate to severe fatigue after completion of initial treatment, and fatigue in these survivors has been shown to endure for up to ten years post-diagnosis. The functioning/quality of life impact of this enduring fatigue is significant…”
A lot of my energy in the past year has been devoted to figuring out why I lack energy. The #1 treatment for persistent cancer-related fatigue is exercise. I’m no stranger to exercise, and have gladly devoted time to hiking, treadmill, yoga, and therabands, only to have my fatigue worsened by activity. This could be a result of pernicious anemia, that I am literally using up all the available B12 in my body between injections. The last month, I’ve consciously avoided exercise, gained five pounds, and felt much better than usual. I have no intention of sustaining an exercise-free life, but at least I can start from a basis of a functional energy level and see where I can go from here. I’ve convinced my doctor to give me B12 injections twice a month rather than the once a month protocol. She is skeptical but it seems to be helping.
The last few years have been difficult enough without having to worry about losing my job, so it’s been a boon to be self-employed. I’ve been able to adjust my work efforts to my energy levels. I’m looking forward to celebrating the tenth anniversary of my design studio in June. I’m happy with how the business is progressing. I’ve focused my efforts on providing high-quality, cost-effective services for small business and start-up companies. In the next month I’ll be launching a new website, with a package deal for a new business to get a logo, brand collateral and a website for one set price. I’ve been promoting the package under the radar and already gotten a couple of clients with the offer.
During the worst of the fatigue, I wondered whether it made more sense to give up and retire early. But I’m not done with design yet. I still get excited when I book a new client, launch a new website, or finish a new logo. I debate whether it makes more sense to spend my time doing housework and yardwork, or work more hours in the hopes of being able to hire someone to do those for us. I can tell you this: given the choice between sitting at my computer tweaking CSS, or vacuuming the carpets, I’ll choose Cascading Style Sheets anytime.
I have spent more time this year on creative endeavors, and hope—no, plan—to continue and increase that in the future. I’m too lazy this morning, but perhaps later this week I’ll take a few pictures of my efforts. I’ve done some beading projects, and have become especially enamored of beaded kumihimo, which is a technique for weaving beaded ropes. I’ve gotten a book on kumihimo with wire, but don’t have the equipment I need yet. I’ve started teaching myself calligraphy, beginning with the basic miniscule alphabet. I’m learning to draw Celtic knotwork. I’ve picked up my needlepoint here and there, tried my hand at ornamental knotting, and gone as far as getting some wreath-making supplies and a book, although I have yet to try my hand at that.
Most significantly, I’ve enrolled in the Botanical Illustration certificate program offered by the North Carolina Botanical Garden. I’m only in the Beginning Drawing class so far, and happy with what I’m doing…which is no small accomplishment, since I tend to be completely neurotic and self-flagellating about my drawing abilities. Maybe it just took me 56 years to be mature enough to handle a pencil.
The program will include another drawing class, as well as pen & ink, colored pencil, three classes in watercolor, composition, and color theory. I’ll be taking science classes, too: botany, taxonomy, and local flora. I’m hoping they will offer an elective in gouache while I’m enrolled. The entire program could take three to five years to complete. It’s not that I’m that interested in botanical illustration per se. But I have some artistic ideas that I’d like to develop which would benefit from skills in pen & ink and watercolor. And I’ve always wanted to simply draw precisely from life, which is the key skill I’ll be learning.
After cancer, a patient is encouraged not to get back to normal, but to find their “new normal”. I may never return to the energy levels that I had pre-cancer…by the time the energy-sapping, bone-decaying five years of hormone treatment are through, I’ll be nearly 60 years old. But I’ll have a successful more-than-ten-years-old design business, a certificate in botanical illustration, some artwork to my name, and some nifty beaded necklaces as well.
The carpets may still be a bit dusty, though.
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Tags: Cancer · Design · Health · Working World
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.
Our house, in the spring with the azaleas in bloom. Note the fluffy cat on the lawn.
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.
Our local access trail to the Eno River crosses this bridge at Seven Mile Creek.
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.
The end of the trail at Bobbitt’s Hole
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.
Cutest baby ever!
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.
Myself (left) and my sister receiving the Bill Finger Award at Comic-Con 2012 for our father, Frank Doyle.
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.
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Tags: Aging · Cancer · Durham, NC · Friends & Family · Health · Mom · Working World
September 2nd, 2011 · 3 Comments
Today is my 54th birthday. I started this blog 4 years ago, shortly after my 50th birthday. It’s been neglected, mostly because I’m either posting boring stuff on my business blog, or I’m honing the art of drive-by snark on facebook.
A lot has happened in the last year:
We have a son-in-law.
My mother has died.
I am a cancer patient.
We’ve moved to a house by the river.
It seems like my stepdaughter’s wedding was the last week of pure fun in my life. After a week in the mountains of North Carolina, listening to the water over the rocks in the river as I baked umpteen cookies for the wedding, we had a glorious day of dancing and eating and drinking and laughing to celebrate the nuptials. We came back to Durham, and reality, through a non-stop downpour. My Dad used to say that you always want rain on the last day of vacation, because it’s much sadder to end your vacation on a beautiful day.
I returned home with the intention of focusing my attentions fully on my business for the remainder of the year. We had no more big events planned, no more vacations or out of town trips. No more distractions.
A couple of weeks later, the day before her 90th birthday, my mother landed in the hospital. That was the beginning of 5 months of ER visits, Urgent Care visits, regular doctor appointments, specialist appointments; cleaning accidents off the floor and walls of her bathroom; caring for a wound that stubbornly refused to heal, and would ultimately be her downfall; setting up services for wound care, physical therapy, household help, and medication management; buying a walker and arguing to get her to use it, arguments about her alcohol consumption, arguments about her ability to stay independent, transferring her finances to my sister’s care, and moving her from the hospital to short-term care to assisted living.
And telling her the doctor wasn’t joking when she said her leg had to be amputated.
I poured her a drink—and one for myself and one for my sister—as we absorbed that news. I emailed her primary physician and demanded to speak to him immediately about alternatives. My mother was relieved when she realized she had an alternative to amputation—hospice.
A couple of weeks later, we were sitting in the rocking chairs outside her new home, on an unseasonably warm day, as she drifted in and out of sleep, smiling as she watched the clouds and the birds. She was happy and peaceful—but not resigned to her fate. She was still determined to “prove them wrong” about the ultimate conclusion of hospice care.
Later that week I rushed to the assisted living facility when I got the call that Something Had Happened, she had fallen out of her chair and was speaking unintelligibly. She looked terrified as she struggled to be understood, struggled to understand what was happening to her. I called my sister and nephew, who were coming to visit from out of state, to tell them that they needed to accelerate their arrival times. The next morning, before they arrived, she drifted into a sleep that she would remain in for the next eight days, while we hovered nearby, talking, laughing, holding her hand, talking to her without response, watching basketball or old movies, reading books, taking breaks to go out for meals. As we sat down for a breakfast of waffles one morning we got the phone call that, despite our vigils, she had died early that morning, alone.
Then the mourning began, and the settling of the estate, the cremation, moving her belongings from both her old and new homes. Donating furniture. Searching for the key to the safe deposit box. My sister and nephew returned home. Life began to get back to normal. I worked a 40 hour week for the first time in months, then another. I did chores and made appointments that had been postponed since October.
Like my mammogram.
Wouldn’t it be a kick in the pants, I thought, after all I’ve been through in the last 6 months, if I turned out to have cancer?
Mammograms are not pleasant, but they are routine. A routine mammogram. You go, you get it, a few days later you get a letter that everything was normal and come back next year. At least that’s what usually happens, and what you hope will happen.
That didn’t happen this time.
Instead, I got a message saying that they needed me to come back for a second mammogram, and maybe an ultrasound. I called in a panic—why? What did they see? Do I have cancer?
Not to worry, she said. It’s very common to be called back for a second look. My older mammograms were done on analog equipment; their newer, digital equipment had a much clearer picture, and most of what they see turns out to be nothing. They’ll take another look at the left breast, and if necessary, do an ultrasound, just down the hall.
They took the films. They told me to go down the hall.
I could look over my shoulder and see the ulstrasound monitor. A black screen with white streaks. I didn’t see any big white blobs. That must be good, right?
Wrong. The tumor isn’t shown as a white blob, but as a dark area interrupting the white streaks. The tech was marking a vague area of negative space. “There’s something there, isn’t there?” I asked.
The moment she said “Yes” was the most brutal moment of this whole journey. The realization that there was something inside me that shouldn’t be there. The realization that I really might have cancer. She held my hand as I cried from the shock.
The oncologist came in and said something about biopsy and something something stereosomething and that the “lesion” was close to the chest wall so maybe a needle biopsy would not be appropriate blah blah but they would send the films over to the Breast Cancer Center at Duke.
And so it began.
I picked up a CD of the imaging at the hospital, and brought them to my prebiopsy appointment at Duke. The nurse practitioner could barely feel anything in my breast that seemed unusual (even knowing there was something there, I could not feel a lump). Probably just a cyst, she said. Then she took the CD to the oncologist. When she returned, she said “You have an appointment for a biopsy next Friday at 10:30.” That pattern continued: everyone was encouraging until they actually saw the films. I did not take that as a good sign.
I downloaded the files from the CD before delivering it. I had no clue what I was looking at, but at least I could read the descriptions.
There was a word I’d never seen before—”spiculated”. The lesion was about 1.1 cm at its widest, and had spiculated margins.
80% of lesions found on mammograms are benign.
80% of lesions with spiculated margins are cancer.
So it was not a big surprise when the nurse practitioner called the week following the biopsy to let me know that I had invasive breast cancer.
My husband accompanied me to my presurgical appointments—six hours at the Morris Cancer Clinic at Duke, meeting with the surgeon and the radiation oncologist, getting labs done. As we walked across the campus, I said to Barry “I can’t believe I’m a cancer patient.”
The good news was that the tumor was small. In addition to removing the tumor, the surgeon would remove a bit of tissue around it to make sure there was nothing else nearby. In addition to that incision, I would have an incision near my armpit to remove some lymph nodes to see if any cancer cells had spread there. If they had, there was more of a chance that the cancer had metastasized. As long as the tumor margins and the lymph nodes were clear of cancer, I would move on to radiation. Chemotherapy was up in the air…we’d need the results of the surgery to determine whether that was necessary or not.
I was terrified of surgery. The only surgery I’d ever had was having my wisdom teeth removed. I didn’t know how much pain I’d be in, how long it would take to recover, if I’d appear mutilated when it was done. My fears turned out to be the worst part once again. I felt so little pain that I only took the pain killers a couple of nights to get to sleep, I was at work the next morning (albeit prone on the sofa with the laptop), and the only evidence of the surgery was two small scars. Other than some post-anaesthesia vomiting, it was a smooth ride.
The post-surgical appointment held both good news and bad. The tumor was ER/PR+ (estrogen and progesterone receptor positive), meaning it was slow-growing, and added hormonal therapy to the anti-cancer arsenal. It was HER2/neu negative, which also indicates slow tumor growth, and meant not having to get Herceptin, a type of chemotherapy. Best of all, the lymph nodes were all negative. In every case, it was the best news we could hope for.
There was one small problem, though. Although the margins of the tumor surgery were clean, they found a second tumor. This one was a very small—only a few millimeters—DCIS tumor. DCIS is ductal carcinoma in situ, and is considered precancerous: the tumor is still contained entirely within the walls of the breast duct. But should it break through the walls, it then becomes invasive breast cancer and has the capacity to metastasize.
Even though it was small and benign, the DCIS tumor required its own margins, to ensure there were no others lurking nearby. So a second surgery was scheduled. This one was even easier than the first, and the margins were clean. After a month of healing I could start radiation treatments.
During that month I also met with the medical oncologist. We briefly discussed the hormone therapy that would begin after radiation was complete. We also discussed one additional test that would determine once and for all if I needed chemo. The oncotype DX test is fairly new, and is only given to women whose tumors are small, are ER+ and have no node involvement—in other words, women who have an excellent prognosis and are presumed to have very little risk of recurrence. It examines the genetic makeup of the tumor itself to determine if, despite all the good signs, this tumor includes other factors that may make it more aggressive. The test result is summed up in a number: below a certain number, the risk of severe side effects (including leukemia) from the chemo is greater than the benefits that chemo would offer. Above, chemo is definitely recommended. In between is a gray zone.
The medical oncologist reassured me that she fully expected my test to come back indicating no need for chemotherapy, however, it was worth it to be sure. We scheduled a follow-up appointment two weeks later to discuss the results.
A week later, I was getting in the car to head to a meeting with a client when I got a call on my cell phone. The results of the oncotype test were back; could I come in right away to talk to the oncologist?
Not the call you want to get when you’re on your way to a meeting where you want to be focused and confident.
I headed over to Duke after the meeting and got the news: the oncotype test came back exactly in the center of the gray zone.
Nonetheless, the oncologist recommended that I get chemo. It’s a statistical call: the chance that chemo would keep the cancer from returning was double the chance of having severe long terms side effects.
They gave me a stack of prescriptions—a couple for nausea and vomiting, one for anxiety, even one for a wig. A couple of others—I don’t even remember now what they are for. And a stack of papers to read about the drugs they’ll be administering. I’ll have four treatments (2 hours of IV), spaced three weeks apart. The list of possible side effects is impressive. Nausea, vomiting, diarrhea, constipation, heartburn, loss of appetite, mouth sores, fatigue, bone pain, anemia, susceptibility to infection. Hair falling out, fingernails falling off. Peripheral neuropathy. Leukemia. There were pages about how to eat, what to avoid, what over-the-counter remedies to have on hand, when to call the oncology team, when to go to the ER.
To make my day complete, I started radiation therapy that night, too. The night before I’d had my “simulation”, where they figure out all the settings on the machine for your treatment. They drew all over my torso with sharpies, and covered the sharpie scribbles with clear stickers so they wouldn’t wash off. This helps them to position my body in the machine the exact same way every day; they line the marks up with lasers. I looked like the surface of the road just before they start working on the sewers. Until this week, when they started radiating a smaller area (a process known as “the boost”), I couldn’t wear a neckline lower than a t-shirt without revealing a purple scribble and sticker on my sternum.
I had hoped I’d be done with radiation by my birthday, but I will have three more treatments next week. Radiation has not been bad at all. Yes, it’s an inconvenience to have to go to the cancer clinic every evening, but I’m lucky that I live 15 minutes from a major cancer treatment center. I get to sleep in my own bed every night, not a hotel. Six weeks have flown by.
I have yet to experience the fatigue I was warned was sure to come (there’s still time…side effects last a couple of weeks after the end of treatment). My skin looks mildly sunburned, and occasionally feels a bit irritated, or I’ll get an odd pain or soreness. But nothing terrible. The radiation oncology team tells me that my skin is doing amazingly well—better than most they’ve seen. I credit that to frequent and ample applications of Aquaphor ointment.
After radiation is completed, I’ll have a treatment-free month before starting chemo. After three months of chemo, I’ll begin five years of hormonal therapy. But that’s just a pill a day. My prognosis remains excellent. I don’t fear for my mortality so much as still having a viable career after 15 months of ongoing crises.
On the good news side of this year’s big events, we are in the process of moving into our new home. On the one hand, home shopping, negotiating, mortgage qualifying, inspections and moving has only added to an already unprecedented level of stress. On the other hand, I’m thrilled to be moving to a bigger house, in a quieter neighborhood, with a trail to the Eno River a block away. I’ve wanted to move for years now. I’m looking forward to living in a house where I’ll feel at home. It will be a much better place to reside during three months of chemo treatments.
Soon, our daughter and son-in-law will move into our current house, find new jobs or start grad school here in Durham. Maybe start a family here someday. Come over for Sunday dinner and a movie like my Mom used to do.
Tonight we’ll celebrate our new home with new neighbors and old friends, shoot some pool and belly up to the bar in the house’s big rec room. There should still be enough daylight the first few hours for people to walk in the beautiful gardens on the property.
It’s a good day to celebrate new beginnings and new life. Happy birthday to me.
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Tags: 27701 · Aging · Cancer · Friends & Family · Health · Mom
November 9th, 2010 · 3 Comments
I pressed the wrong button on the remote control tonight and instead of landing on the Comedy Channel, I caught a few minutes of the national news on ABC. They were in the middle of an interview with a minister who started reading some contemporary atheist thinking, such as Richard Dawkins, with the intent of being able to refute the atheist arguments. But the research had the opposite effect: they realized that scripture does not stand up well to scrutiny.
This story comes on the heels of a story about a Pew Research Center survey about knowledge of religion that showed that atheists are more educated about religion than most of the faithful.
This does not surprise me. Being able to step back from one’s religion and scripture and look at it thoroughly and in context is not something that is encouraged in most religions. Scripture is studied within the context of unquestioning faith, without ever studying where scripture itself comes from. So the faithful are able to accept absurdities within the confines of their religion—such as people rising from the dead—that they would roll their eyes at in any other context.
I had it easier than the men in this story because it was relatively easy for me to slip from the confines of the Catholic Church the day I moved away from my home, three months after my 12 years of Catholic education were concluded. Although I may have disappointed my mother a bit, I did not have congregations that relied on me to support their faith. In the ensuing years—it’s been over 35 years since the last time I was forced to attend mass—atheism has become such a natural part of my thinking that I genuinely find it odd that anyone still goes to church.
The transition from believer to atheist was not overnight. First of all, contrary to what some believe, Catholicism is not a fundamentalist religion. So although I was taught that the gospels were gospel truth, the tall tales of the Old Testament were presented as myths and parables. I progressed from Catholic to Christian to “spiritual, not religious” to agnostic, and eventually to atheist. For the final push, someone said to me “Why do you call yourself an agnostic? Do you believe in god, or not?” I could no longer hedge the answer to that question.
I now look at believers, and they make no more sense to me than if they believed in Santa Claus. I keep wondering if they really believe, deep down, or if they avoid thinking about it, or admitting that they don’t believe the stories any more than I do. It makes it difficult to have conversations with people when their most deeply held beliefs are based on tales that I believe to be nothing more than tales.
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September 14th, 2010 · 2 Comments
After months of neglect, I’m dusting off Ye Olde Blog to participate in Invisible Illness Week. I heard about it through a migraine e-list that I’m on. I guess it resonated with me because I spent Friday afternoon and most of Saturday with migraine.
An invisible illness is one where you don’t “look sick”. This has a wacky effect on the people around you. If I see something you can’t see, you might figure I’m imagining it, and you might be right. But if I feel something that you can’t see, you might also figure that I’m imagining it. That adds an extra burden to those with invisible illness. Not only are you in pain or otherwise debilitated, but now people think you’re lazy, dishonest or neurotic, too. I’ve had people express concern if they hear me sniffle, yet tell me that a painful, debilitating genetic neurological disorder (which is what migraine is) is (a) psychosomatic, (b) something I could easily cure by giving up sugar or wheat or doing tai chi or whatever they read in some magazine at the dentist last week.
So here’s my pass at the Invisible Illness Meme. I think some of the questions are dumb, but hey, I didn’t write them.
1. The illness I live with is: migraine.
2. I was diagnosed with it in the year: 1981
3. But I had symptoms since: 1971
4. The biggest adjustment I’ve had to make is: never knowing when I’m going to lose time to migraine and have to rearrange my plans.
5. Most people assume: that I’m in pain, and they’re right.
6. The hardest part about mornings are: most mornings are fine, but waking up with a migraine is no fun. It means taking meds and going back to bed. I can’t always start my work day at a consistent hour.
7. My favorite medical TV show is: Um, I don’t watch a lot of TV, but Scrubs is funny.
8. A gadget I couldn’t live without is: my visor. I’m extremely sensitive to light even when I don’t have a migraine, and bright or flickering lights can trigger them.. I can’t spend time in a room with fluorescent lights or a ceiling fan without wearing my visor.
9. The hardest part about nights are: waking up in the middle of the night with migraine, and having to go downstairs and eat crackers to cushion my stomach against the meds.
10. Each day I take a lot of pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: believe the alternative medicine industry is filled with quacks. That said, there are a lot of excellent alternative treatments. I do yoga and meditate daily; valerian root is part of my migraine regimen. But after years of trying alternative treatments I have a lot of respect for double-blind, placebo based studies.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. There are plenty of times when I’ve bludgeoned my way through a day in agony, with nobody around me any the wiser.
13. Regarding working and career: Working for myself allows me to control my hours and the lighting in my workspace. This has made an enormous difference.
14. People would be surprised to know: migraine is not just a headache. And although the headaches with migraine can be incredibly severe, a migraine episode can also not involve a lot of actual head pain. But think about having a fever and being nauseous: you’re not in pain, but you’re still very sick. So although I may not have severe pain, I feel very sick if I’m not lying completely still with my eyes closed in a dark room.
15. The hardest thing to accept about my new reality has been: losing time to illness.
16. Something I never thought I could do with my illness that I did was: continue to hike even though hiking often triggered severe migraines. Spending time in the wilderness was too important to me, though, that I learned how to hike and to behave post-hike that at least kept the migraines from being too awful.
17. The commercials about my illness: are not something I’m aware of.
18. Something I really miss doing since I was diagnosed is: being a child. I’ve had these since I was 14 and I’m 53 now.
19. It was really hard to have to give up: being able to run around on a hot day.
20. A new hobby I have taken up since my diagnosis is: again, I’ve had these so long that there aren’t any hobbies I’ve taken up in reaction to them. I did used to play guitar when I had them, though, because it was the only thing I could do with my eyes closed.
21. If I could have one day of feeling normal again I would: I feel normal most days. But a week without a migraine would be swell.
22. My illness has taught me: awareness of my body.
23. Want to know a secret? One thing people say that gets under my skin is: “Oh, you could cure them if you would just —”
24. But I love it when people: Say “That’s gotta suck.”
25. My favorite motto, scripture, quote that gets me through tough times is: I don’t have one that relates to this. But I comfort myself knowing I’ll probably feel better around 8:00 at night. For some reason my migraines tend to dissolve mid-evening.
26. When someone is diagnosed I’d like to tell them: Read all the current literature you can, because the understanding of migraine has changed drastically in the last 40 years, and not all doctors and nurses are up on the latest. Read about common triggers and track yours.
27. Something that has surprised me about living with an illness is: how it’s possible to be very healthy, and yet still lose time to illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: take me to the emergency room when I had an especially severe episode.
29. I’m involved with Invisible Illness Week because: if one person learns something about this and makes one less moronic, ignorant, insensitive statement to someone who is suffering, then this will have been worth my time.
30. The fact that you read this list makes me feel: a little embarrassed. But at least now you know why I wear those stupid visors all the time.
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January 27th, 2010 · 2 Comments
There’s a term for that kind of thinking: magical thinking.
Man, I have problems with that kind of thinking.
I went a regular monthly meeting tonight; this month’s presentation was given by a “life coach”. One of those people who hasn’t yet quit the boring, unfulfilling day job, yet has a second career coaching others how to manifest prosperity by thinking differently.
And if you just clap your hands, boys and girls, Tinkerbell will be saved!
I am a believer in the power of positive thinking. I am also a believer in the power of logical thought, weighing your options, understanding your audience/market, offering something your audience/market wants, and plain old-fashioned hard work.
I think it’s critical to believe you will be successful in your endeavors, otherwise you will not take the first step. I don’t think there’s any magic in that, just common sense.
I think that people who make a career out of preaching positive thinking (with an 8-week course, credit cards accepted), without acknowledging that success requires much more than just positive thinking, are exploiting people’s hope, fear, and laziness.
I think people who spout pseudo-science and pseudo-religion do justice to neither science nor religion. Give me some real data other than “the top 3% of rich people all think like this!” Don’t tell me that no religion honors the poor…ever hear of the Sermon on the Mount? Jesus did not preach Blessed are Those Who Think Prosperity, for They Will Get Whatever They Visualize. Like a house on a lake!
I think telling someone that her husband’s year and a half of unemployment is his fault for not thinking about it in the right way is an insult. To do so in front of an audience including several who have been unemployed, or whose spouses are unemployed, who are wondering what the fuck to do with that MBA or the 30 year’s journalism experience that nobody seems to want anymore, is rude, naive and ignorant.
I think that countering objections by stating that the objector (umm, that would be me, yeah) is Unenlightened and ignorant, because the objector has objections, while sidestepping the objections themselves, is an ad hominem reaction, not a defense of reasonable ideas.
It is the core of cult thinking. And that’s not positive.
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Tags: Brainworks · Food · pet peeves · Society · Working World
A funny thing happened on the way to Mari & Charlie’s brunch today.
We were in the middle of the no-man’s-land between Roxboro & Markham…you know, that part of The Worst-Designed Intersection in Durham (or is it in all of North Carolina?) where you’ve already crossed northbound Roxboro and are waiting for a break in the southbound traffic…when a car with a carousel horse on the roof pulls up next to us. It’s Madame deNerve and Miss Andrews…and a puppy. They found said critter running across Washington Street, chasing a mama bear that looked none too interested in continuing her role as Supplier of Free Milk. Mama had the remnants of a chain around her neck; either she had liberated herself or her human companions decided to comply with the new No Chained Dogs ordinance by contributing to Durham’s thriving population of stray dogs.
They knew we’d been discussing the possibility of getting a new dog, so they were actually on their way over to see us before bringing the little fella to the pound. Barry asked if I’d be OK with adopting the dog. I looked at his furry little face framed in their car window, the serious expression, the adorable brown puppy eyebrows, and said “I’m already in love with him.”
So we went to the brunch for a bit, then returned to pick up our new dog from the neighbors. They were calling him Elijah, after Barry’s favorite bourbon, although we’re not committed on a name yet. He’s probably part rottweiler, although the mom was something different. He’s a furry little bear cub, who likes to snuggle in a den, and already runs after Barry with his tail wagging every time the Big Dog walks across the room.
Our New Puppy
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Tags: 27701 · Durham, NC · Friends & Family · Pets
December 27th, 2009 · 1 Comment
The term “date movie” pinged off my forehead recently…it may have been in a review of It’s Complicated. It got me thinking about what the heck, exactly, is a date movie.
I believe the other term of choice is “Chick Flick”. Or, as my husband would say, “That looks like something you can go see with your women’s movie group”.
So the first tenet of a date movie: the man on the date would rather be in the next theatre watching Avatar.
Then why would a man subject himself to testicle-shrinking tortures of the Popular Romantic Comedy genre? To movies which must, according to law, include at least one scene of the cast gleefully singing or dancing to a pop song? To Hugh Grant? To male characters spouting effusive declarations of love in Unlikely Places with people watching who all clap afterward, perhaps a cue that we should applaud as well? Does he really think that enduring this will help him get laid after the movie?
Does it ever work?
I once went to see Last of the Mohicans with a boyfriend. Daniel Day Lewis is pretty hot in that movie; you’d think it would be an inspirational film in the Chick Flick as Soft-Core Porn for Women kinda way. But when I looked at my boyfriend afterward, my thought was: Damn. You’d never save me from a Huron war party.
I’ve only been on two date-movie-dates in my life, where the movie was a First Date, rather than just a fun thing to do with someone I was already dating.
I cringe to think of both of those dates.
The first was to see Alladin (my choice; I forget exactly why I wanted to see it but I did. I’ve always been a sucker for animation, what can I tell you). Before the date we went out for pizza. My date was belligerently rude to the waitress for no reason that I could see, other than that he thought this proved his suitability for mating according to some manliness=assholeness equation. By the time we reached the theatre I knew that a second date was not gonna happen.
Halfway through the movie, he abruptly took my hand and said “May I hold your hand?”
My other date-movie-date was with a man who, on the phone arranging our date, asked if he should pick me up in the Mercedes or the Range Rover. Gosh, I don’t know, which one do you think will be more reliable to get us all the way to the theater 3 miles away?
We saw Forrest Gump, a decent movie, although I never found it as brilliant as others did. At every poignant moment, my date uttered a little “Ooooh” moan of sympathy. Wow, sensitive and a Mercedes!
There wasn’t much chemistry, so we didn’t last past a second or third date. Just as well…he had basset hounds.
Last night Barry and I went to see Up in the Air. We’re about to hit the 10-year-mark as a couple, so we dispensed with all that holding of hands and muttering of sympathetic noises. The film has some elements of Date Movieness: Flirting. A wedding. A woman wearing nothing but a necktie. George Clooney.
Although I didn’t expect a date movie, it starts veering into that territory about 2/3 of the way in. You see George on the verge of Being Transformed by the Love of a Woman: one of the other tenets of Date Movies. There’s an epiphany, a shocked crowd as the Transformed Man goes running off to find the arms of the Woman of his Dreams. Transformation Happens, but not according to the well-worn grooves of Date Moviedom, a plot turn that violates the Laws of the Chick Flick.
Up in the Air met my criteria for a good date movie, though: we talked about it afterward. Was it a good ending or weak? What was he thinking when he stared at the Departures/Arrivals board? At the map full of photos before the wedding? Where was he going at the end? Were the shots of angry people about to be laid off a plot device, a nod towards relevancy, or central to the theme? How enjoyable can a movie be if the main characters are unlikable? Would you ever really meet a woman like that in real life?
Maybe a true Date Movie is to get a woman in an, umm, romantic mood, to equate the handsome and affectionate man on the screen with the mundane and hopeful man in the next seat at the theatre. A good Old Married Couple Date Movie opens a new conversation, something that can be rare when you see each other day after day…
Oops, I lost my train of thought. Barry came in to ask me: do you think he was lying to his boss at the end of the movie?
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December 18th, 2009 · 4 Comments
The first line of the winter storm should be hitting us within the hour; according to the doppler the edge of it is just coming into Chapel Hill now. I still get excited as a child for a Major Weather Event (other than heat waves and cold waves, which are merely uncomfortable rather than dramatic); in a place where 20mph is considered “windy” we don’t have too many of them. Of course my commute is the same rain or shine, and after a month of tag-team colds and sinus infections, I’ve had plenty of sofa-lounging time in recent weeks. But as a result of that, I’m also behind on house cleaning and holiday preparations. So I’m declaring today a snow day for me.
The weekend before Christmas is good a time as any for some weather-dictated stay-at-home time. The tree is up but not decorated; butter is defrosting for cookie baking; there are presents to be wrapped. I haven’t even put all the groceries away from last night. I even picked up a few logs in case the power knocks out the heat. As long as the power doesn’t fail while cookies are in the oven, and the outage doesn’t last more than a night, I’m OK with it. I don’t need a repeat of the eight days without power we had in 2002. Although a few hours with a roaring fire, candlelight, snow falling and quality time with my sweetie doesn’t sound too bad either.
UPDATE: A completely underwhelming weather event. Other than a brief flurry, the snow didn’t start until 5pm, then turned to sleet within a few hours. There’s a dusting of snow on the grass but it looks like the storm was saving its wrath to dump on DC and NY. Have a snowball fight for me, y’all!
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Tags: Holidays · Weather
Got this poorly timed postcard in the mail today:
Poorly timed because my Blue Cross Blue Shield benefits don’t cover a whole year’s worth of brand name medication, which means I’m in the part of year when I’m paying $300+ per month for prescriptions, on top of the nearly $500/month that I pay for insurance premiums.
I don’t need Blue Cross Blue Shield telling me what I should be telling my senator about health care. I need them to be covering my health care costs for a full 12 months of the year.
But I see no reason to not make use of a prepaid mailer to let Senator Hagan know my views on single payer healthcare.
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Tags: Health · North Carolina · Politics