Playing the numbers

Dr. P. called me a couple of days ago to say that he had talked to the medical oncologists at OHSU and thought that because there were two tumors and at least one of them was a grade 3, that the oncotype dx test would be a waste of time and money, especially since it would take two tests, one for each tumor, at $3400 each. He said he would schedule me for an MRI for the remaining breast (as per my wishes) and get me scheduled with a medical oncologist.

I was down for the count at that point anyway, having exhausted myself from working and riding my bicycle, pretending to be an already healed person. I simply agreed with what he said, although I had doubts. However, I immediately started making some phone calls. One was to Genomic Health. Would I need two tests? Well, yes and no. We could test the largest tumor first and if that put me in the high risk category, we wouldn’t need to test the next one. Or we could do both at once. And the fact that it is a grade 3 doesn’t disqualify it from meeting testing criteria, although it’s not a negligible factor. What matters is whether it is node negative and estrogen positive. And the largest tumor was still under 2 cm which is good. This answer tallied with my own research on the subject.

Dr. P.’s office called to schedule an appointment with Dr. L., a medical oncologist. I also called Northwest Cancer Specialists and made an appointment with Dr. V. Since this is a relationship that will last for many years, I needed to start the interview process and find the doctor and the place that is right for me. And I have a number of questions.

I reviewed the numbers that Dr. P. gave me with Dr. E. (my homeopath) yesterday and they surprised me, because the case for chemo is even weaker than I remembered, statistically speaking. Here’s what Dr. P wrote down when he originally proposed chemo:

10 year survival rates for me:
83.5% chance of being alive with no further treatment
12.8% chance of dying of breast cancer
3.7% chance of dying of other causes

Improvement with other therapies:
3.8% improvement with hormone therapy (HT) alone, or an 87.3% survival rate at ten years
3.5% improvement with chemotherapy alone, or an 87% survival rate at ten years
6.3% improvement with both, or an 89.8% survival rate at ten years.


He explained while 3.8% + 3.5% do not add up to 6.3%, there are other factors that affect the numbers. Furthermore, when you graph it out, a 6.3% improvement rate in survival at ten years becomes a 12.6% improvement at 20 years.

So, my survival rate improves by 2.5% by doing chemo if I do HT (or 5% at 20 years). Those numbers do not convince me at all, considering the risks of chemo. This is why I need to talk to at least a couple of different medical oncologists. I don’t think that the case for chemo has been made yet at all. I believe that HT is warranted, despite the side effects. Of course, if we do the oncotype dx test and it puts me in the high risk group, that's a much more compelling argument for chemo. The oncotype dx test is relatively new, so all these stats predate this. Since chemo has no effect on 73% of people who are ER+ and node negative, one can extrapolate that it would be roughly four times more effective for those in the high risk group. In that case it would improve my survival rate by 10% after 10 years and 20% after 20 years. Those are the kind of stats that could convince me to do chemo. (Of course, this is speculation. I don't know if that's how this works, just as I don't know how 3.8% and 3.5% can add up to 6.3%).

It’s all a lot to think about. Next week should yield a lot more information.

Meanwhile, I frustrated by my setback. It seems that I’m not yet ready to return to work on a half time schedule. I'm certainly not yet ready to ride a bicycle. I’ll do some work from home. I’ll also get a bus pass next month and keep myself from riding my bicycle. I'll also try to keep driving down to a minimum. Yesterday I drove to appointments and by mid-afternoon I felt spacey and tired and like I was not entirely safe on the road. Driving is still not a good idea for me. I want to be all the way better but there’s still a lot of healing to do. The swelling is finally down at the mastectomy site, which is progress.

In the interests of trying everything, I got some essential oils that are supposed to be good for breast cancer, frankincense and clove. I love their fragrances. It feels so comforting to rub them on. My EFT friend, Linda, recommended them. I am so grateful for this new friendship. She has been such a help throughout this process.

Jasper came home yesterday after driving back from New York with his friend in 51 hours. Ah, to be young and totally insane. That’s like 60 miles an hour without stops, although he says that they did stop for meals. And they intended to stop longer than they did but never found a place to stop that was remotely appealing so they just pressed on. Anyway, it’s lovely to have him back. I’m so very fond of my children, who have grown up to be such delightful and amazing young men. He's willing to chauffeur me around, which will be so helpful.

Questioning Chemotherapy

There are so many things to consider in cancer treatment. I read an article about how chemotherapy negatively affects brain function decades afterward and I was alarmed. One of the women in my support group completed chemotherapy several years ago and she says she still has trouble making sense of the page when she reads. Having a functional brain is very important to me. I didn't suffer through graduate school just to have chemo dull my intellectual abilities.

One of the problems I’m having is that I don’t buy into the chemotherapy model. In fact, I don't agree with the approach that Western medicine takes in general, especially to chronic disease. And chemotherapy, according to my surgical oncologist, improves my survival rate at 10 years by 3.8%, which seems pretty anemic. Without chemo or hormone therapy (HT), my survival rate at ten years is 83%. Here we are talking about survival, not recurrence, of course. HT pushes it up marginally more than chemo and together they push the survival rate to 89.9%. HT is not nearly as unpleasant as chemo, although it has its own drawbacks.

I have asked to have a test done called oncotype dx which lets one know whether or not chemo will work. If one falls into the low risk or intermediate risk group (for recurrence), chemo is not recommended. I talked to a customer service person at the test place today and the chance of being in the low risk group is 51%, and in the intermediate group is 27%. So there is a 73% chance I won't being doing chemo. And if I do, I'll be pretty sure that it isn't a waste of time, energy, and money.

Of course, the problem right now is that Blue Cross of California has denied the claim, at least initially. The test costs $3400 and chemo costs about $34,000. They'll pay for chemo, but not for a 73% chance that they could save themselves a lot of money. Go figure. Blue Cross says they've never heard of the test, and yet they have an account with the company and have paid claims for the test several times. Medicare even pays for the test.

Anyway, while I'm not counting any chickens before they hatch, I feel hopeful that 1) Blue Cross will come to their senses and pay for the test, and 2) the results will show that I'm in the low risk group. Once Blue Cross approves the claim, my doctor will send the tissue in and then it will take 10-14 days to get the results.

My housemate Stephen loaned me a book that I found quite pertinent to my particular healing journey, Profound Healing by Cheryl Canfield. She had advanced cervical cancer with no hope of recovery. She set about "dying well" and in the process healed herself. One of the images that I resonated with is her visualization of cancer cells as unreasoning children that are upset and in need of comfort and acceptance. It makes so much more sense than visualizing oneself as a battleground where evil cells are routed out and killed. I visualize my healthy cells mentoring and comforting these crying children cells, and turning them into to happy and healthy cells.

Like the author of the book, I was driving myself much too hard for much too long. I believed I was taking care of myself, but really, I didn't have a clue about how to treat myself well. I'm learning, although it comes slowly. For instance, I rode my bicycle 11 miles yesterday. I'm paying the price today. It's hard to remember that I'm still in recovery mode, especially when I feel good and especially when I just want my life to be "normal" again. I've returned to work, at least part time for now. However, I'm not terribly functional today because I'm suffering the effects of doing too much yesterday. Evidently I have to learn these lessons over and over again.

In the Pink

My aim is to make chemo as interesting as I can. Somewhere in the recesses of my house or garageI have a very nice pink wig. I hope to find it by the time my hair starts falling out. I bought it many years ago in Covent Garden in London when my oldest son was a toddler. I used to wear it when I performed with my juggling partner (who is now deceased, God bless him). I would assert that I had naturally pink hair and he would counter that I was wearing a wig. Finally, after some back and forth, he would snatch the wig off my head only to reveal bright pink hair underneath. I had dyed my hair magenta.

Anyway, I’m in the process of attracting pink garments to myself. Back in the day when I had magenta colored hair I went for bright colors and short skirts, but now I’m just looking for quiet pinks and longer, flowing clothes. Someone just gave me a long pink overcoat that’s perfect. I shall hit the thrift stores in search of more pink items as well. I think the more that I can build a wardrobe that will support me in this, the better. Having pink hair is very much like being a blond. Having no hair, including eyebrows and eyelashes will actually assist the pink look. I'm looking forward to finding some pink tennis shoes and perhaps some rollerskates I can dye pink, although I probably won't feel like rollerskating for a while.

As much as possible, I’d like to make chemo interesting and fun. Exploring my pink persona is one way of doing that. I was a very feminine clown. This also will be the clown persona, but grown up, wiser, and older.

While I’m finding the idea of chemo quite daunting (aside from reflections on my wardrobe), I have the support of wonderful and wise women who have already done this before me. I went to my support group last night and it’s so fabulous to be among them. I know this is a rough journey, and the perils are great, but this is about healing and I’m learning so much. It gives me the opportunity to slow down for a change and look at my life, my relationships, and my work in the world. Maybe just by healing myself I am doing my work in the world. Maybe I don’t have to push myself as hard as I’ve been these past five years. Maybe I can let it all unfold as it was meant to be, learn the lessons I was meant to learn, and in turn, learn how to help others through this journey. Our newest member was so overwhelmed yesterday and I had been in her place so recently, but I had some tools to offer her and hopefully she will call me and allow me the great privilege to be of service. That’s really all I ask, to serve others and to allow them to serve me when I need it. And they do. I have had such great caring shown to me by so many people I am overwhelmed with gratitude.

Moira is an English lady in our group who is proceeding me in treatment. She just started chemo a couple of weeks ago. She showed up last night looking stunning in a new wig. It was such a better style that the one she had before she lost her hair. And she has such a great attitude. I hope I can pull this off with the grace that she is showing.

I return to work on Monday. Even as late as Wednesday I was wondering if that was a realistic time frame. However, these past couple of days I’ve felt much stronger. I even rode my bicycle to the store and back, two whole miles. It was such a thrill to be back in the saddle again. And I wasn’t exhausted afterwards. I’ll have at least four weeks before chemo starts so I can get a lot of bicycling in, perhaps not full tilt, but at least one way to work, then take the bus home. I so adore bicycling, especially in this glorious autumn weather.

The Verdict

The verdict is in. I’m to have chemo. I’ll have the oncotype dx test done first on the breast tissue that was removed and if that indicates that chemo will be effective then I’ll start chemo in about a month or so. In the meantime, I’ll meet with a medical oncologist to find out exactly what the plan will be, but it looks as if it will be AC for two months followed by taxol for two months. It’s really the best way to get rid of any rogue cells that have intentions of setting up shop in other parts of my body. It will be four months of unpleasantness, but I think that it will be worth it. The largest tumor was 1.7 cm and it was a grade 3, which means that it’s an aggressive form of cancer. According to the research that I’ve done on medical databases, survival rates under those circumstances improve with chemotherapy. I’m not crazy about the idea, but I do understand the why it makes sense. I have a commitment to staying on the planet as long as I can. If Howard will do that paperwork for the medical claims, the deal is that I’ll do the treatment. I’d rather do chemo than the paperwork at this point. Ask me in a few months, though. I might be willing to trade.

I'm also scheduling an MRI to see what's going on in the remaining breast. Dr. Pommier says that he's not happy with any imaging technique and MRIs are apt to give false positives and false negatives. However, I'd like another look, a differents sort of look. If a mammogram can miss a 1.7 cm tumor, that's a cause for concern. Dr. Pommier says that what an MRI or a mammogram is able to see is not the tumor itself but the body's response to the tumor. Therefore, one can have a large tumor but not much of a response to it or a small tumor and a large response to it. The tumor itself is made up of breast cells, although they are cancerous. To the mammogram or MRI, they just look like breast tissue. However fibrous masses or calcifications can form in response to the tumors and those are what show up in images. It's not very reassuring. It seems as if the only way that one can really know what is going on is to take the tissue out and look at it under a microscope.

To slightly change the topic, I got fit for a prosthesis this morning. It's great to have the option of looking like my old self again. I was getting tired of the wounded look of being flat on one side with one large droopy breast on the other. I wore it around for a few hours, but I'm still healing on that one side so a few hours was quite enough. Still, it was great to fill out my clothes for a change. I'm going back to work on Monday so I'm hoping to look (and feel) normal by then. My energy is good. I'm down to the one-nap-a-day plan now. That's progress.

Driving Upside Down

I had a dream a few weeks afterI was first diagnosed. Howard, Andrine, David and I were driving up and impossibly steep hill and we soon realized that it was so steep that we had to turn around. Howard was driving the car and he made a U-turn; he turned downward so that we were driving upside down under an outcropping. I expected to fall straight down and crash on the rocks below and I awoke with a start, only to realize that we hadn’t fallen. We were driving upside down.

I had been telling people (around the time of the dream) that I felt as if my whole world turned upside down. Heretofore I had been very healthy, eating well, had a job I loved, I exercised a lot, and had great relationships. I didn’t fit my profile of a cancer patient. I couldn’t relate to the fact that I was ill. It didn’t make sense. It wasn’t in my model of the world to have a major life threatening disease. I was truly stunned to find out that I had cancer. There was no way it was possible in my mind. Suddenly I was in a round of endlessly seeing doctors and surgeons and every time I had a biopsy, even though there was always an 80% chance that nothing would be found, I was always in the unlucky 20%. My world was upside down.

But we’re still driving, if upside down. I went to Fred Meyer’s today, drove by myself, parked in the handicapped parking and hung my disabled parking placard on the rearview mirror. I drove a motorized cart around the store since my energy is still pretty limited. It was odd as it could be for someone who is used to bicycling everywhere through any sort of weather. I think of myself as very hearty and practically indestructible under normal circumstances but suddenly I’m operating under very abnormal circumstances. I've had to slow way down and accept myself as disabled. I'm the person who is supposed to care for others. I'm now the cared for. It's so upside down.

Tomorrow the tumor board at OHSU meets to decide what happens next, chemo or oophorectomy. I’m also having the tumor board at Providence take a look at my pathology report and come up with a recommendation. My homeopath is very skeptical about the oophorectomey idea, much preferring chemotherapy as it is more likely to make a clean sweep of any rogue cells that may have escaped to other parts of my body with intent to set up a new civilization. Barbara, the naturopathic oncologist, concurs that chemo would be best under the circumstances. I took a look into the databases to read a few abstracts and a paper on the subject and, indeed, chemo definitely improves survival rates for women with grade 3 tumors over 1 cm, even without node involvlement. I’m also interested in retaining an interest in sex and an oophorectomy is not a great option in that case. Whatever happens, I think it's time to get an oncotype test done on the breast tissue that was removed to see if chemo would have an effect. If not, there's no point in going through it.

There are so many questions and so many factors to consider.

I'm still looking for my pink wig that I used to wear many years ago. If I have chemo, it's definitely going to be part of my wardrobe. Yesterday Andrine brought home a pink winter coat that a client gave to her and said I could have it. I think it's a good sign that I'm attracting pink garments. I don't normally wear long coats. I wear bicycling clothes, especically in the winter when I have to dress for the rain. This coat is really beautiful. It's going to be a long winter of taking the bus. However, I will feel a lot better with pink hair and a pink coat. I still have the hats that I used to wear with the wig. It's got to be around here somewhere. I'm hoping that I can find some brave soul to help me go wig hunting through the basement. The task seems very daunting at the moment.

Expect a Miracle

I turn over cards every day at night for the next day. The one I turned over for today was "Miracles" and it told me to expect a miracle. Okay. Although I didn't see how, I was open to what might occur to shift the situation. Certainly my mood had shifted when I woke up and I felt optimistic and light. The swelling around the mastectomy site had gone down. And I slept seven and a half hours, which is much more sleep than I've managed at a stretch in a very long time.

Andrine gave me a wonderful massage this afternoon and I could feel a lot of energy shift while I was on the table. She is truly gifted. I felt calm, relaxed, and a bit sleepy afterwards, although I didn't sleep. Then Teri came over for a visit and that was very pleasant. My new friend Heather showed up as well and we played a bit of scrabble while Teri looked over my healing notebooks.

The phone(s) kept interrupting this pleasant scene, but it was mostly good news. My doctor's nurse called to answer the questions I had on Friday and of course I had a whole list of quite technical questions so she handed the phone to the doctor (the surgical oncologist) who had been standing right next to her. And yes, he could order the oncotype dx test and thought it might be a good idea. And then I asked him about removing my ovaries (an operation known as an oophorectomy), since that would bring on menopause, cut down estorgen, and reduce my risk of ovarian cancer (which is really horrible). He thought that would be a great idea and he said it also would eliminate the need for chemo. He said if we're going to go that route, we won't need the oncotype dx test (very expensive). It still has to go before the tumor board on the 19th, but this may just be my ticket out of here. I'm elated by the possiblity that I won't have to do chemo. And menopause sounds like a great idea at this point. Gee whiz, I'm 55. It's about time. I could barely contain myself. It's a miracle. It did leave me wondering why he hadn't thought of the oopherectomery idea himself, though.

Then my friend Johanna called. I had wanted to do an Spiritual Respnse Therapy (SRT) workshop in Olympia later this month but given my energy level, it was out of the question. However, she's going to do it as well so she will do the driving and will help me out. I made reservations today. The SRT classes were all part of my master plan and I'm amazed that they are back in the picture. It's another miracle.

It may be a time of slowing down, but that gives me a chance to notice these miracles blooming around me all the time. It's sukkot, the season of our joy and I felt very joyful today. Teri stayed for dinner, which ended abruptly when we all ran off to our scheduled meetings. She was still eating as we ran off. Fortunately Stepen was there to keep her company, but it did seem very silly of us, especially since Teri is one of the more delightful people on the planet and we don't see nearly enought of her.

Later, my EFT group met at my house. It was really a lovely meeting. I got to work on someone else's issues for a change and we had a lot of fun. It was very lighthearted and playful work.

Jasper will be flying off to New York on Wednesday to do this show. They have expanded the part of the accordianist so they need him NOW. I'm very intrigued to find out what this play will be all about. It turns out that Howard will be New York when it's on and will be able to see it. I look forward to the reports. And if I'm not doing chemo, I will be able to see Jasper perform in San Diego in January and take my trip to LA and San Francisco. More miracles.

Hair today, gone tomorrow

I went with David to look at wigs yesterday, after checking out websites. I’m sure it will be amusing to be bald but I’d like the option to have hair when I want it, especially since the chemo will be taking place from early November to early March, and being hairless sounds cold. I found a shop that was in Gresham that looked intriguing and indeed, the woman running it was great. She was a hair dresser who had been in the wig business for 30 years. She pulled out the perfect wig immediately and it was in my price range. I didn't buy it because there's still a small chance I won't be doing chemo, but it's a very small chance. I did all my research of medical journals online and indeed, chemo is very much recommended under the circumstances, given the content of my pathology report. Once I get the confirmation from the Oncology Board, I'll buy the wig. I bought a head scarf at the wig shop when I was there because it was pretty and it was cheap. The more prepared I am, the better I'll feel.

I've had a lot of grieving to do. I’m disappointed right now that I can’t get back to life as I know it. I won’t be able to ride my bicycle for at least five months, for instance. All my plans to get a new job once my old one ends seem impractical right now. Everyone assures me that although I’ll feel tired, I can probably keep working, at least part time. Four months of chemo is a long time. I’m in some pain now as well. I was warned this might happen after I had initially responded so well to the mastectomy. The pain is not overwhelming and it's something I can deal with when I'm up and moving around, but it’s enough to keep me from sleeping well. Lack of sleep is taking its toll. I should probably get a prescription filled for a painkiller that's stronger than ibuprofen. I can't use the vicoden that was originally prescribed due to my sensitivity to acetomenophene.

My EFT buddy, Linda, did some tapping with me over the phone which helped me through the initial shock. She was great. I was a such a basket case prior to her interevention. It's so hard to work on yourself during periods of intense emotion. It really does take another person to provide perspective. This is so huge for me I simply can't do it alone.

I’m learning to slow down, to be present in the moment; that's what we tapped on in the EFT session. It’s not a time to strive, or even to plan. It’s time to be a human being, not a human doing. That's proving to be a challenge for me. All I’ve ever wanted to do is save the world. Is that asking too much?

So, it turns out that there’s no easy path out of here, but it’s a journey just the same; it’s time to slow down, not rush around as per usual, but just take it one step at a time.

Adjusting to New Realities

I'm trying to come to terms with this new revelation, that I have to have chemotherapy. I spent the last couple of days in tears, completely upset. While it hasn't been decided for sure, the more I understand, the more it looks as if I will have to submit to about four months of chemo.

The oncology board at OHSU (Oregon Health Sciences University) where I had surgery will meet on October 19th and at that point they will determine the treatment protocol for me. I met with my naturopathic oncologist this morning and gave her the pathology report from the mastectomy; she believes I will end up having chemotherapy, given the content of the report. However, she seems to think that it will be possible to work part time throughout it, especially if I take a number of (expensive) supplements and Chinese herbs. The fact that I did so well with surgery argues that chemo will not be unduly debilitating. I started this adventure in excellent physical shape. Also, the chemo for breast cancer isn’t nearly as awful as what my co-worker just went through for non-Hodgekins lymphoma, although it will be unpleasant enough, I’m sure.

I’m trying to take it all one step at a time. The news about the chemo was pretty devastating to me at first, since it was so unexpected. However, the report said they found a grade 3 tumor that was 1.7 cm and another one that was .9 cm: chemo is indicated in that sort of circumstance. Barbara (the naturopathic oncologist) is pretty sure they will recommend AC for two months which entails an injection every two weeks, then a two month course of Taxol, again, every two weeks. There is a very expensive test (not covered by insurance, I’m sure) that I can take to find out if the type of cancer that I have is likely to recur and if it is responsive to chemo. I may opt to do that if my surgical oncologist thinks it makes sense. I don’t want to go through chemo unnecessarily. However, grade 3 means it's aggressive so if chemo will help, I should probably do it.

Of course, my instinct is just to refuse chemo entirely, and I'd have an 83% chance of living another 10 years without any further treatment, and a `13 chance of dying from this form of cancer. Although, there was an 80% chance that the suspicious mammogram didn't indicate cancer and then it was an 80% chance that it would be in situ rather than invasive and in just one spot. I'm learning that with this cancer I always seem to be in the unlucky minority. And I'd definitely like to stay on the planet for a lot longer than ten years and in good health. Four months of chemo (and five years of hormone therapy) to stretch my chances to 90% survival in ten years seems fairly reasonable at this point, espcially when one graphs it out and the difference it makes in surviving increases significantly by the time I'm 75. And I'm planning on living at least until then.

So that's the news. I did a lot of EFT work this morning and and I'm feeling calmer now. Sukkot starts on Friday so Gavi and Jasper built and decorated the Sukkah under the direction of Howard and myself. It's gorgeous. Sukkot is my favorite holiday.

I'm off to my support group this evening and hoping to be able to do yoga tomorrow. I'm beginning to get my physical strength back enough that taking a (short) walk sounds like fun. I couldn't imagine working at this point, but I'm doing much better, especially now that I'm in acceptance mode, or at least getting closer to it.

Out of sorts, out of mind.

It's been an exhausting day, made more so by Howard having a melt down earlier. He stomped around on his crutches fuming about how he hated being in the library and he was stir crazy and it was too small and he wanted to be upstairs (after I had just exhausted making the transfer) and how he didn't have anything he needed. I used to fall all over myself when he gots into these pissy moods and I reverted to that old pattern today. I jumped into caregiver role and ended up picking up his computer from the shop; not a good move on my part. I ended up tired and resentful. I need to stick closer to home than that while I recover, especially after a tiring (but fun) morning with Deborah before she left for southern Oregon.

I was still feeling very reactive about this whole situation when Diane called (Howard's girlfriend in New Jersey), very worried about a questionable mammogram and sonogram. From what I could understand, it sounded as if it was a wait-and-keep-an-eye-on-it sort of situation but not something to be unduly upset about. However, she called just at the moment I was most irritated with Howard and got the full brunt of my irritation with him. I was fairly self-involved at the time and not as empathetic as one might be under the circumstances. I'm sorry to be so um, childish, arrogant, and clueless, because we know what that can lead to (see previous post).

A young woman from my cancer survivor's group (that's not what we call it, that's just a catch-all description) visited this evening and her visit was a healing balm to the day. She's been through chemo, and while her experiences were not exactly reassuring, they were true and real, and I appreciated her candidness. She is such a sweet spirit. I was able to tap with her to deal with some of her issues and that was fun. It helped calm me down over the encounter with Howard earlier. The Hebrew Angel card for today was "patience" or "savlanoot." It was patience that I needed to get through the day and patience that I eventually found. I was able to approach Howard with more love and patience finally and let the earlier dissonance of the day dissipate.

Footnotes of the Big Joker

Indian summer ended abruptly today, right about when I was at my doctor’s office. The lab report came back for my mastectomy. They went through the severed breast bit by bit and discovered a couple more tumors, one .9 and one 1.7 cm. The latter puts me in a different category. It means that I’ll probably have to have chemotherapy. This was a bit of a blow; I had been told I had escaped that fate, or at least that is what I heard and so did Howard.

I went into the appointment with all confidence. My friend Deborah drove me there because Howard broke his foot and is now more of an invalid than I am at present (but I’ll go into that later.) At any rate, I believed that the only reason I was to see the doctor today was to have my drain removed (the one for the mastectomy). Deborah waited in the waiting room while I saw him. I had no expectation of bad news so I was alone and hardly tracking what he was saying as he told me the news. Normally I have someone with me taking notes when I see a doctor, someone to ask the questions that I miss. I was stunned and only got the gist of it, not the details. And the gist is, I will probably have to have hormone therapy for five years and chemotherapy anywhere from two months to six months, depending on what kind(s) they choose, and how fast they give it to me, at two week or three week intervals. He will meet with a oncology board on the 19th to determine the best course of action and I will call him that afternoon to find out what they determined. Of course, I could always say no, but it does make sense to at least find out the recommendations. I left his office in a state of shock.

When Deborah and I emerged from the building, the weather had changed. The sky was cloudy and the temperature had suddenly dropped several degrees. It seemed fitting somehow that the optimism of the past week fled with the good weather and colder, more somber skies greeted us.

So, as for Howard, he was performing last night and ran off stage for a costume change, only to trip over coiled ropes which, of course, should have been secured, but weren’t. He fractured his fifth metatarsal. He spent much of the night in an emergency room, and then the guys had to drive through the night to the next gig, which was a matinee. He’s not allowed to put weight on it for at least six weeks, so they quickly revised the show to take into account his new status as injured person. That was okay but then he had many misadventures trying to navigate the airport, missed his connecting plane, had to spend the night in Chicago. He’s finally home today and is exhausted. Andrine, who has been the main caregiver, is completely stressed out at having to take on another invalid. I’m fairly self sufficient now and don’t need a lot of personal tending, but I’m still not terribly useful. I can’t do housework or run errands or be terribly helpful.

Deborah helped move out of the downstairs room I had been staying in so that Howard could move in there to convalesce. We seem to be keeping the infirmary full. I filled it full of flowers for him since flowers were so important to my recovery.

It’s nice to be back in my bedroom. It’s much larger. And I set up a nice chair in it to play the banjo, right where Howard is accustomed to place his suitcase and general personal mess when he comes home. Since he won’t be coming upstairs for a while, I can use that area for music. I’m also continuing to drum and rattle outside. We have a big Japanese bell in our front yard so I have added that to my repertoire as well. I go out there in the morning in my pajamas and bang on that for a while. I must be quite a sight in the early morning.

So, it was all looking pretty hopeful a couple of days ago and now it’s all falling apart. Isn’t that how it goes, though? My dear friend Gregg used to refer to his higher power as the Big Joker. The Big Joker certainly has an odd sense of humor. It’s quite a way to start the New Year. L’Shana Tova. Perhaps we were written in the Book of Life this year, but watch out for those footnotes.

In reading over the Torah every year, especially Exodus and Numbers, I’m always struck as to how it is probably not advantageous to have God pay close attention to you because often it turns out badly for the individuals concerned, especially if they are childish, arrogant, or clueless. (So who isn't childish, arrogant, and clueless at times?) When the Israelites were trudging around it the desert, they lost people right and left to God’s ire. And these were his chosen people. Maybe it's a good idea to keep a low profile. That's never been my strong suit.