Last Gasp of the Year

It’s a beautiful day out there, this last day of 2006. The sun is shining. I’ve been inside, though, mostly talking on the phone. Wolfe called from San Francisco to apprise me of the behavior of neighborhood dogs (who are far more intelligent and engaging than the human neighbors he has described). And Jasper called to say that the play is in tech now. He’s listening to all the arguments, but is blissfully uninvolved as he’s merely an actor and thus considered only a prop.

He’s having the usual trouble with Paul. Jasper and Paul and a few actors have a song in the opening scene in which Jasper played the accordion. It was a complicated little tune but Jasper learned it. However, Paul had no idea where the beat was, so Jasper found a tambourine and started banging out the beat, trying to refrain from beating it onto Paul’s skull. His efforts were so successful that Jasper has now become the tambourine player and has had to ditch the accordion after all that hard work.

I had a restless night. My arm ached, I assume from bone pain from the neulasta and Advil didn’t touch it. I woke every couple of hours drenched in sweat, thanks to hot flashes. Chemically induced menopause is settling in and it’s very unpleasant. I used to be able to regulate my body temperature without thinking about it, but no longer. I have several layers to peel off as I get progressively warmer: hat, fleece vest, pajama top, quilt, blanket, and sheet. And I have to get up and pee every couple of hours. That’s another chemo symptom, urinary urgency. If I don't hope to the minute I feel the urge, I risk wetting my pants. There are so many indignities attached to this adventure.

Meanwhile my room gets messier and messier because I just don’t have the energy to pick it up. The sheets need changing. I need to go to the store to replace some supplements. It’s all not going to get done anytime soon, I can tell.

Despite my complaining, however, I am feeling better. Food is more appealing. I feel more cheerful. It's New Year's Eve and everyone is preparing for a party at our house right now. I'm not a lot of help, of course, but I'm watching on as the house is cleaned and the food is prepared. Last year was my favorite in a long series of NYE parties. We did the Mad Hatter's Tea Party with a huge long table full of pots of tea, cucumber sandwiches, and little cakes. We had several Alices and several March Hares. I made a huge duchess hat. (Another hat! I'll have to post a picture on the blog.) This year is an 007 party. We'll have a mock casino. As I've never felt the slightest interest in James Bond, I can't imagine it will be nearly as fun. Besides, JB drinks martinis, not tea. Tea is much more my speed these days.

Nancy C stopped by last nigh to give me a hat and earrings. It was an especially gorgeous hat so I had to include it, assuming the picture will load properly. She had surgery and lost 100 pounds. Last year about this time she came to the house and none of us recognized her. It was very surreal. A woman came into the house who knew our names and was chattering away and we had no idea who it was until I turned my head away and heard her voice. Then I knew it was Nancy. It's an amazing transformation. She said all her health problems disappeared along with the weight: high blood pressure, arthritis in her knee, asthma, GERD. It's all gone. What an amazing story. She must eat tiny meals for the rest of her life, but she thinks that's a small price to pay.

Knocked Flat, Dreaming of Better Days

It’s two days after chemo and the dexamethazone is wearing off. That’s the steroid that prevents nausea and makes one feel better. I can feel myself slowing down quite a bit. My muscles and bones ache. I know I should exercise, but…I missed yoga today. The drive over there seemed impossible to accomplish. I look forward to teleportation being invented very soon.

We had our little family party last night, our gift exchange. Andrine drew my name and got me Yaktrax, sort of snow chains for your shoes. Now I’m sort of looking forward to an ice storm. And she got me the book about the woman doctor who treated herself for breast cancer while at the Antarctica. I suppose it’s another opportunity to play the Pollyanna Glad Game. At least I’m home in my comfy bedroom instead of trapped on a big hunk of ice with howling winds and cold temperature in the -80 degree range, trying to tell my colleagues how to operate on me.

I feel like a truck backed over me tonight. The neulasta is making my bones ache. I’m tired. My appetite is non-existent. I tried eating dinner but nothing looked good. It’s that two days after chemo feeling. I’m definitely slowing down. I’m watching TV, which is always a bad sign for me since I really dislike it as a general rule. However, when my brain isn’t working well enough to read, it does help pass the time. I can’t believe there are people who work while doing chemo.

I tried listening to the radio but they’re talking about Saddam Hussein’s execution, not the sort of topic I can deal with at present. There’s evidently a rush to get it done before some Sunni holiday that starts at dawn. I don’t think this sort of timing will mollify anyone.

On a brighter note, my email box was full of good wishes from friends and I know that I’m not alone. I don’t have the energy to answer tonight, but tomorrow will be another day. I started an email list with members from my support group and they are using it, so that’s working well, especially this week because there was no group.

Howard came up to check on me. He says he got in the habit of avoiding me when he was sick and now he has to get out of the habit again. He had a particularly nasty cold right when I was neutropenic the last time so I was very glad he was a scrupulous as he was about steering clear of me, but he's been well for a while now. I’ve taken to sleeping alone in my office because I toss and turn and wake up at odd hours, but it’s a lonely existence sometimes.

Someday I’ll be energetic again. Someday I’ll ride my bicycle to work again. Someday I’ll make challah on Friday again. It seems so distant now.

Recovering from an Overdose of Reality

The last post was perhaps a nadir for me. I try to be upbeat, but that was the day all my optimism crashed. Sometimes it's best not to do the research and examine the reality that I'm up against. I was overwhelmed with the thought of having to go through the next round of chemotherapy. I did a lot of EFT that day which helped me get a handle on it. I really didn’t want to dissolve into tears in the doctor’s office or while getting an infusion. I had my EFT group that evening and my group members tapped with me some more, which helped a lot. I was very calm by the time I had to go to my appointment.

After doing the research, I was also apprehensive about reducing the dose too much, as was Dr. V. He suggested reducing it by 25% which seemed like a good compromise to me. And he will order a blood draw at seven days after chemo to see if I’m getting neutropenic and put me on a preventative course of antibiotics if I am. I’ll also get a MUGA scan on the 12th to access if there has been any heart damage. If I get neutropenic again or if there has been any heart damage, we’ll probably switch to taxoltere for the next three rounds.

While I knew that chemo could hardly be smooth sailing, I had no idea that I could be brought down so low. I’m usually such and optimist, but it’s hard to be optimistic without my usual tools. I rely on a regimen of exercise to stay cheerful, about an hour a day. I adore riding my bicycle.
But I’m doing better now. EFT helped a lot to get my mood back again. I’ve been meditating as well and that helps. Perhaps I’ll take a walk to day. I have a hydro with Lori. It might make sense to walk over there and back. I’ll see how the day goes.

More hats at the top. I seem to be having some problems loading pictures lately, so there are still some to load. I'll post them as this program allows.

Pessimistic Thoughts Before Chemo

I woke up with the refrain repeating in my head, “One more day of feeling okay.” Tomorrow is my next chemotherapy. I spent yesterday evening researching neutropenia. Of course, the big preventative for it is supposed to be a shot of neulasta, but I developed grade 4 neutropenia eight days after my last chemo after having a neulasta shot as recommended. I had no neutrophils at all. That’s what makes it grade 4. Grade 5 is death. Furthermore, 9.5% of grade 4 neutropenic patients die. It’s always nice to do the research to see what I’m up against.

I also ran across a nice little paper about neutropenic patients and quality of life (QOL). It turns out that one’s QOL is affected when one is extremely tired and unable to do the things one is accustomed to doing. I find that I have given up on eating vegetables because it’s just too much work to cook them. I don’t eat salad because I distrust raw vegetables at this point due to whatever microbes might be on them. I have no energy for exercise. I don’t dare go to a movie or sit in any sort of audience because I might expose myself to some sort of infection. And sex, what’s that? Who’d ever want to do something like that? Yeah, my QOL has taken a nosedive.

On the other hand, cutting down on the amount of chemotherapy negatively affects survival rates. Since I’m in that unlucky 1% who became neutropenic after a neulasta shot, reducing the amount of chemotherapy is really the only strategy left. After all, the hemorrhoid was really a fissure. There could be other fissures in my colon, where there are no nerve endings to warn me and peritonitis is definitely one of the risks. One of the women in my support group became neutropenic and came down with spinal meningitis. That’s something to look forward to. Another woman in my yoga class just got out of a two week stay in the hospital due to a rousing case of pneumonia following neutropenia. So much to look forward to.

I got Cancer Made Me a Shallower Person by Miriam Engelberg because I loved the title. However, it was very sobering. She, like me, had a grade 3 tumor (aggressive) but no node involvement (that’s good) and she dutifully did chemotherapy, just like me. However, it recurred, metastasized, and she’s dead now. Somehow this didn’t cheer me up at all. I was encouraged that someone with such a crude cartooning style could persevere and make a whole book. In my heart of hearts I believe that if one can’t draw as well as Alison Bechdel’s Dykes to Watch Out For there is no point to even trying, so of course I don’t. Well, Miriam Engelberg died at age 48 when her kid was nine years old. At least my kids have reached adulthood. That’s some consolation, whatever happens. If I die, they’ll be sad, but not scarred for life.

Quiet Day

Many thanks to all hat and earring contributors. I have lots of choices now, many colors to wear, many styles to choose from. I feel very warm and loved.

It’s a very quiet day. I’m taking it slowly because I have no choice in the matter. My energy is quite low and I sleep a lot. I’d like to exercise more, but it sounds very complicated right now. Everything sounds complicated. I remember that I used to feel pretty good. I hope that will happen again. I truly dread this next round of chemo, but I keep assuring myself that I have the power to refuse it if my doctor won’t reduce it to a tolerable level. I have no desire to land in the hospital again. Twice was enough.

On another topic, last night was fun. Glen came over and brought some DVDs. We watched the Lake House, which was a very slow moving chick flick. I like chick flicks as a rule, but I could have used a car chase or a sword fight after that one. We made it a pajama party. Of course, every day is a pajama day for me, but Glen wore pajamas in solidarity. David wore pajamas because he never bothered putting on clothes all day.

David cooked a turkey dinner with all the trimmings for Christmas Eve dinner, but that was our only concession to Christmas this year. Usually David puts up a tree, but thought it was too much work this year. The dinner was great, however, and afterwards we trooped upstairs to see the second feature, Little Miss Sunshine. Although many of us had seen it before, it was delightful to see it again. It manages to combine wonderful slapstick with an ongoing Proust vs. Nietzsche theme. And it was encouraging to see a dysfunctional family pull together in support of their youngest member without losing any of their dysfunctionality.

Jasper called today. He had yesterday off entirely and today as well. He says the play is a mess at this point, but Michael Preston assured him that every Karamazov project was as torturous as this one. Paul wrote a four hour play that they are trying to cut down to a two and a half hour play. Jasper says they will just have time to block it and do tech before the previews but no time to do any sort of fine tuning. Still, Jasper is enjoying the process of rehearsal. He’s the young guy so it falls to him to do all the fighting and dancing and lugging things around.

Gavi spent the last week writing music with his friend Yuri for their band The Planets. Yuri goes to school in Bellingham and Emily, the other member, goes to school at BYU in Idaho. It’s not like they get together a lot, but it always seems to be fruitful when they do. Gavi is also in a couple of other bands, Funk Shui and Danish Modern.

Hats, Earrings, and the 30% Solution

Wednesday was the Hat and Earring Party. Nadine organized a lovely party which took place at my house. Many people came from various parts of my life. It was a potluck so there was lots of food. I got tons of hats and earrings. I took lots of pictures, one of each hat, but I don't know if they will post in such great quantities. This will be an experiment. Also, not all of the pictures are posted here. There are still more hats to be documented in this space. And I had to throw in a bald picture. I find it so odd to be bald. I tried changing earrings, but they don't show up in the photos.

It was so lovely to have such a supportive group of people there to see me through this. It is turning out to be quite the ordeal. I’m dreading the next chemo treatment, of course, and why not, considering how horrendous the last two have been. Dr. V. suggested cutting back the chemo by 20%. After the first treatment, it took twelve days to destroy my immune system. After the second, it took only eight days to destroy it, despite the addition of neulasta to the regimen. This tells me something. I took my trusty pendulum out to check how much the chemo should be reduced. The answer I got was 35%. If it was reduced by 35% I could still get the benefit from the treatment, but I wouldn’t necessarily wipe out my immune system. I asked if I could compromise at all. I got the answer that I could reduce by 30% but not to go for less of a reduction than that. Not that doctors listen to the results of pendulums. But they do listen to patients who refuse consent to treatment. I think I shall just put it to him that way: we reduce the chemo by 30-35% or we don’t do it at all.

I was just plain lucky that I didn’t come down with Howard’s virus during that last episode. He had a terrible cold when he left for the coast. If I had got that, I could have been down with viral pneumonia, which wouldn’t have responded to all the antibiotics they pumped through me. Furthermore, a hospital is not a great place to be when one is without an immune system, since it is a disease exchange facility. I’m just not ready to run that risk again.

Now that I have some white blood cells to lend to the fray, my hemorrhoid is finally manageable and I’m no longer in constant pain. For that reason alone, I want to either drastically cut down the amount of chemo or forego the experience entirely. I just don’t want to go through that again. I’ve had it.

Wednesday was the first day in a long while that I felt fairly good. I was able to stay up until 10:30, which was pretty good for me. Laurie Childers came up from Corvalis and it was such a treat to see her I stayed up as long as I could. Thursday was another good day. The sun was out so I walk to get my hydro from Lori, then walked back home. It was a full mile there and back, nothing under ordinary circumstances, but pretty good during chemo. I went to my support group last night and that was really helpful, as usual.

However, I have good days and bad days and today was a bad day. I couldn’t stay awake at all. I slept most of the day. I suppose, given my recent circumstances, any day that I’m not in pain should be considered a good day, so perhaps I’m not playing the Pollyanna Glad Game to its fullest extent. But I’m exhausted and I’m fretting about the next treatment. I just have to stand my ground on this one.

Today is the shortest day of the year. It only gets brighter from now on.

Howard's Surgery, Andrine's Car

Howard is getting cataract surgery today on the second eye. He had cataract surgery on the first eye a few months ago and could immediately see distant objects with no glasses. However, he has been in the process of training that eye to read. The discrepancy between the eye that had the operation and the remaining eye was 10 diopters, which is huge. Such a discrepancy may have contributed to his breaking his foot when he ran off stage in September. The eye surgeon, however, seems to think this is elective surgery and thus we will have to pay for it instead of him submitting it to insurance. I’m afraid I don’t understand. Howard, peeved at the idea of being half blind, has elected to do the surgery anyway. I think he has made a good choice. But I don’t think he’ll be reading for a while.

Now that I have a few white blood cells to throw at the problem, my hemorrhoid is healing. The pain level is down to a 1 out of 10 which is a vast improvement. It makes me glad I don’t have such problems under normal circumstances.

It turns out that chemo isn’t good for one’s health. This is the unhealthiest thing I’ve ever done to myself. Despite the neulasta, the last chemo wiped out my immune system. I had no neutrophils, which are the first line of defense against infection, and my white count was .4, and normal is 10. In other words, chemo took out 96% of my immune system. That’s pretty extreme. Dr. V. proposes cutting the dose of the next one to 80%. I did my pendulum swinging (so very scientific) and got that I should ask for it to be cut to 65%, but that I could settle for 70%. In that range, I could get the benefits of chemo, but avoid destroying my immune system. I’m not looking forward to another hospitalization.

My appetite is affected. I’m really not very interested in food, especially the things I normally like. I usually like hummus but it looks awful to me now. I had some toast for lunch. I try to avoid bread usually, but it was the only thing that looked at all palatable. Bland is good at this point.

Tomorrow is my hat and earring party. I’m already receiving hats in the mail. Deborah sent me a lovely hat, pictured at the top here.

I just got word that Howard’s surgery went well, although it turned out to be more painful than he expected. The doctor wasn’t so surprised since it was the eye that had the detached retina repair. It’s amazing that Howard has any vision at all in that eye.

Andrine bought a Zap last weekend, a three wheeled car that runs exclusively on electricity, and it is due to be delivered at four today, so that should cause great excitement. It goes 40 miles and hour, tops, and goes 40 miles per charge. It’s officially registered as a motorcycle, although one doesn’t need a special motorcycle license to drive it. She bought a zebra striped model. It looks like a lot of fun. She says it doesn’t have much of a suspension system so going over pot holes can be exciting.

Chemo is a Pain in the Ass

Saturday:

Deborah informed me that my blog was getting a bit out of date, no entries since who knows when. It’s because I started slowing down after the last chemo, just not feeling terribly energetic.

Last week was the week that all family members went away, except for David, who was working full time. Howard and Andrine went to the coast, Gavi went to Pullman to visit his girlfriend, and Jasper is rehearsing a play, Don Quixote, at the San Diego Repertory Theatre.

Although it seemed overly cautious, we set up a schedule so that friends could come in and be present in case I rapidly fell ill as I did after the last chemo. It was fun to have people come over and have them work or study at my house. Liz Schwartz came on Monday and wrote copy for symphony programs. She got out a bunch of CDs to listen to and had some library books to sift through to find interesting tidbits about the pieces and composers. That looked like a great job. Sylvia came on Tuesday and accompanied me on a doctor’s visit, and then helped me put Chinese herbs in little capsules so I could actually take them again. (The herbs in solution were too unpalatable to keep down in the face of chemo.) Sarah Shine showed up on Wednesday morning. She is about two weeks away from giving birth so we got to talk about babies and fun stuff like that. Anhei came in the afternoon and we talked and then took a walk in the rain. So I must have been feeling okay on Wednesday if I felt like walking.

Thursday, however, was a different matter. My hemorrhoid became very painful suddenly. Sylvia came over and we drove through the driving rain to Milwaukee to see the naturopathic hemorrhoid doctor. After that, I had a hydro with Lori. She noticed I was running a low grade fever, in the 99 degree range. I went home, feeling pretty tired, and went to bed.

I took my temperature and it was rising. When it got above 100.5, I knew to call Dr. Van Ho. He said to come in and have my blood drawn, which I did. Stephen drove Sylvia and me because at this point I knew I was in no shape to drive. While we were waiting for the lab results I suddenly couldn’t stand to sit upright anymore so Sylvia asked for a place for me to lie down. More waiting and more waiting, then finally a nurse came in to draw more blood, then the doctor came in and said I was neutropenic again and had to go to the hospital. I had no neutrophils at all, and the white cell count was .4. This was after the neulasta shot which was supposed to solve this problem. I was quite discouraged. The doctor opined that it may because the chemo treatment was too strong. He proposed cutting it back by 20% next time. Like every chemical I’ve every encountered, I’m very sensitive to it. Cutting back by 20% doesn’t seem like enough cutting, but perhaps we’ll try that and see if I can stay out of the hospital.

The hospital had no beds on the oncology ward so I was sent to the ICU. (The photo is from the ICU.) This is not a place one wants to be if one is conscious. The nurses were delighted to have a patient who could walk and talk for a change. The room was quite large and encased by glass so anyone could peer in to see how the patient was doing. There were curtains, but the nurses didn’t close them all the way. There was no bathroom since comatose patients don’t need bathrooms. They brought in a commode for me. I was hooked up to an IV which couldn’t be dragged around so I was on a very short leash. The commode was close to the bed so I could use it, but I couldn’t venture far enough to close the drapes. There was no such thing as privacy and I had to tell myself that I would never see these people again so that I could manage to use the commode. I’ve never felt so exposed.

The evening and the night passed and I was still hooked to the IV. The lights in the room didn’t turn off, because what do you care if you’re comatose? All sorts of beeps and alarms chimed through the night. My fever was over 102, but I felt pretty good compared to my neighbors. I obviously didn’t belong there.

At about 10 am the next day, I got untethered from my IV. That was a vast improvement. I could close the curtains when I used the commode. The nurse brought me in a CD player and the Beatle’s White Album (among others) so I had some entertainment. There was a TV in the room but it had a very dim green picture; it was evidently just a prop because comatose people don’t watch TV.

Finally, in the late afternoon, a room on the oncology ward became available. That didn’t mean I could move immediately, however. It still took a couple of hours for the new room to be cleaned. I was impatient to the point of near insanity by that point. Fortunately, David showed up just when I was feeling like this would never end. After a while, the nurse appeared with a wheelchair and we made our triumphant ascent to the sixth floor.

Oh, frabjous day, calloo, callay. I’m in a real hospital room again. I can close the door. The lights turn off. I have a toilet that flushes and I don’t have to use it in view of casual passersby. I suppose we have these experiences to make us appreciate what we have. I can almost enjoy being on the oncology ward now that I’ve experienced the ICU.

Howard and Andrine were at the coast during the big storm on Thursday, the night that I was admitted to the hospital. They were at Rockaway Beach, which had the highest sustained winds in the Northwest that night, 97 miles per hour. The lost electricity and heat. It took them six hours to drive back to Portland on Friday, a journey that usually takes two. But they arrived home at last. After a brief rest, they came to the hospital and brought in an electric menorah for me, since it was Hanukkah. We screwed in light bulbs instead of lighting candles and sang prayers. I had been lamenting missing the first night of Hanukkah with my family, so it was a delightful surprise. All night, nurses and CNAs would come in a remark on the menorah. One of them said, “Your candelabra isn’t working well. Only two bulbs are lit.”

My blood counts were still very low as of this morning so I didn’t get to go home today as I had hoped. However, they are struggling back. The neutrophil count went from 0 to 913 (it has to get to 1000). The white cell count is up to 1.8, with 4.0 being the goal to get me out of here. And I’m learning that for me, neutropenia is a pain in the butt, literally. When I get neutropenic, my first symptom is hemorrhoid pain. It’s so undignified, but there you are. I’m finding it’s hard to go through this chemo experience without learning all sorts of things one would just as soon have skipped knowing.

Sunday:

Oh, hallelujah, I'm home again. The doctor came in this morning without a mask, a good sign since everyone has to wear a mask around neutropenic patients. He said my counts were up. He spoke so rapidly I didn't get what they were but so what, I was already packing. I called Howard and he came and got me and we went out to breakfast at The Bridges Cafe. We ordered smoked salmon eggs benedict and I polished off the whole thing. I was starved for decent food. I had dutifully eaten the hospital food but it was hardly a pleasant experience. Real food, by contrast, was such a pleasure. Oh, my.

One of the problems I'm continuing to have, however, is being literally crippled with pain from the hemorrhoid. It makes it very difficult to walk and move around. Howard offered me an arm to escort me around and I needed it. I've no idea how to get over this. I took a pain pill when I got home, something I try to avoid at all costs because it will just compound the problem later by causing constipation. Oh dear, I sound like all those boring old people who talk about their bowels, for instance, the ones that would drive me mad with impatience and disgust when I was a teenager. Oh, wait, I get it! I am officially a boring old person! Now I understand how such topics can become central to one's consciousness. Pain has a way of commanding one's complete attention.

Of course, being home has its perils as well. David ran a high fever all night and is in the grips of some gastro-intestinal disorder. Tasche has a cold. I'm keeping to the third floor, avoiding the kitchen, and only using my own bathroom. I'm still operating on less than half an immune system so it's wise to take every precaution.

But here I am. I'm home. It's a rich and varied environment and no one here is going to come in and stick me with needles or take my blood pressure in the middle of the night. There are so many things for which to be grateful.

A Little Perspective

When I was in the hospital at Good Sam last week, David went to visit a colleague who was there at the same time that I was. She had recently gone to the doctor complaining of back pain. The doctor could find nothing wrong with her back but ordered some tests. She had advanced cancer that had spread to her lungs, liver, and lymph system. David called me yesterday to tell me that she had died, two weeks after diagnosis. She was thirty-five years old.

This gives me a little perspective when I want to complain about the difficulties of chemo. I have been remarkably lucky. My cancer was caught early, and although it’s an aggressive form, it hadn’t spread far. A mastectomy, chemo, and hormone therapy put my ten year survival rate at 90%. Just the fact that it’s been almost six months from diagnosis and I’m still alive is a miracle indeed.

So chemo went well. I had almost no nausea. I even felt well enough to attend my group last night, pink wig and all. My group is very sustaining to me. It was so good to be among those incredibly wise and compassionate women.

Today I woke up and, well, I didn’t feel so great. Every muscle and every bone ached. I had little appetite, although I made myself eat and I felt better. I tapped and got my pain level down, but I’m moving slowly and that’s okay. Tomorrow is the B’nai Mitzvah and I can tell it will be too much for me. I think I’ll sit it out.

But it’s life in slo-mo and slo-mo is okay. It’s nice to sit around in my pink pajamas and contemplate the world from my attic window. The sun is so low in the sky these days that I can watch the sunrise and sunset from it. It’s a good time of year to be laying low. I read the newspaper, not just the front page and the editorials, but the arts section and long articles on this and that. I do the crossword puzzle, the ultimate luxury. Most of all, I revel in the fact that I’m alive and my chances of staying alive for quite a while are very good. As I remember, 90% is at least a B. And that’s more than passing.

Gearing up for Chemo

Here’s a photo of me with the red wig. It’s still possible for me to look fairly normal. It’s a little scratchy, but I can do it for a few hours at a time.

It’s chemo day. I’m a little apprehensive, given what happened last time. Landing in the hospital was not my idea of fun. However, tomorrow I will get a shot of nulasta which should forestall that possibility.

Glen took me out for a very nice dinner last night at the Bombay Cricket Club. It was my first time out in public since my hospitalization. We made a date to watch chick flicks in our jammies since I’m wary about going to theaters at this point, it being cold and flu season.

Nadine has organized a hat and earring shower/potluck for me on the 20th at my house (I’m allergic to cats so her house so mine seemed the better choice.). If you are reading this and didn’t get an invitation and would like to attend, contact her or me. Anyway, that sounds like fun. I added the earring part because it seemed like an excuse to get really creative. Bald heads look better with earrings.

I’ve been feeling well enough to exercise lately. We’ll see how I feel tomorrow about that. However, for now it feels good to move my body again. I have been taking yoga classes as well. I just found out about a free 12 week fitness program for cancer patients run by Cancer Care Resources at the Mittleman Jewish Community Center that I might look into. That’s a bit of a drive for me at this point, but it might be worth it.

So, I’m working on my EFT certification. I’ve been watching old DVDs and hoping to send off my Basic Certification exam soon. Once I do that, I’ll work on my advanced certification. I’m trying to use this time profitably. The next big project will be to put a web site together for an EFT practice. I figure if I just keep taking one step after another, I’ll eventually get to where I’d like to be.

Hairless, Heaven Forefend

Here’s a picture of me as an alien and a picture of me in the pink wig. I shaved off the rest of my hair yesterday. It was falling out so fast and it was so itchy on my collar and my pillow that it was time to stop the torment. It’s a rather startling look, much more so than the buzz cut of last week. I’ve always been a person with abundant hair and now it’s all gone. This major disease experience is all about letting go: letting go of self perceptions, letting go of treasured activities (bicycling, going to the movies or opera), letting go of going to work. But I suppose hair is the most dramatic loss.

However, the pink wig is comfortable and fun and now I’ve got the wardrobe for it so I’ve been wearing it today. It’s a little costume-like, but what the heck.

It’s cold out there. The high today is 36 degrees. I contemplated taking a walk because it was clear and sunny, but I was afraid of getting chilled. I’m treating myself very gingerly right now. I’m beginning to realize just how fragile I am. I’m so used to feeling invincible and it’s just not that way.

Elaine from my group called to check in. She had heard that I was in the hospital. She was hospitalized during chemo as well. I told her that although I had an extensive hat collection, I didn’t have anything that I could throw on that was warm and soft. She said she had some chemo hats that she had left over and that she would drop them by. I am constantly amazed and touched by the generosity of the women in my support group. They call and check in on me all the time and I am so grateful for that.

Howard’s having a wonderful time in Nashville at his training. He sounds excited when I talk to him on the phone. I imagine he will be very good at doing presentations, given his background in performance and biology. He was happy to find out that he will be able to adapt the presentation to his style.

The week after next (December 11-15) Howard and Andrine are going to a writer’s retreat on the coast. Jasper will already have left for San Diego and Gavi is going to visit his girlfriend at WSU in Pullman, which means I will have to find people to hang out for a bit during the day until David shows up. I’m not an overly demanding patient, but I now have an appreciation for just how fast I can crash; it seems prudent to have someone about during the day since it will be the week after chemo. I've broken it up into 10 shifts (5 morning, 5 afternoon) and so far I have five filled in.

Why is it that I'm always so startled by the change in seasons? I look out my window and I am amazed that the leaves are off the trees and the branches are tossing in the wind. It's not like this is something new. When summer comes I also feel off guard. Perhaps this is because I spent so much of my youth in San Francisco, where the seasons never go to extremes. It rarely gets really hot and it never snows there. I suppose I prefer this climate, but it never fails to surprise me.

Adventures in Chemoland

The picture is of me in the hospital. I crashed Tuesday evening, or at least my immune system did. One moment I was fine, the next I felt like death warmed over. I went to yoga class and started out fine, but I could not get warm. I stuck it out but my teeth were chattering. Jasper picked me up (thank goodness I didn’t have to drive myself home) as I felt sicker by the minute. Dinner was in progress when I arrived home so I sat down, still dressed in my heavy coat, scarf, and a couple of hats, but the food looked remarkably unappealing although it was Howard’s fabulous stir fry, which I usually love. I tried a couple of bites and immediately felt nauseous. This was a bad sign. I never go off my feed. I excused myself, went upstairs and found the thermometer. I had a temperature of 100.3 degress. No cause for alarm, perhaps, but given how ill I felt it was time to call the doctor.

Dr. V. said to go to the hospital immediately and he would check me in. David drove me over and dropped me off at the lobby. Once he came back from parking the car, he commandeered a wheel chair and we went off the cancer ward on the sixth floor. Dr. V. had come and gone and the nurses were expecting me. My white cell count was down to 1700 and my neutrophils were down to 200. My blood pressure was 82 over 40 and my fever was over 101. I was neutropenic, thanks to the chemo, which meant I had no immune system left. Chemo kills fast growing cells, including all those lovely white blood cells that spring into action when we are beset by microscopic invaders.

I got a private room and everyone had to wash their hands and put on a mask before seeing me. I had lots of visitors, especially that first day when I was just a sleeping lump. I didn’t have the energy to even feel apologetic about being so dull and uninspiring. But I was still running a fairly high fever. At one point it got up to 102.2 – hardly a record, but uncomfortable enough.

The worst part of the ordeal was the emergence of a painful hemorrhoid. Oh my heavens. I was warned about mouth sores, but not this. And the doctor said it was definitely the result of chemo. Mouth sores would be a lot more dignified. This hemorrhoid made every shift of the body, every tiny fart absolutely unbearable. I never quite understood about hemorrhoids before. One more damn thing to feel compassionate about when someone mentions the problem. I had no idea how very unpleasant they could be. On a scale of 1 to 10 where 10 is the ultimate torture, it has gone from a 7 to a 2, thank goodness, but a 2 is bad enough on an a scale of ultimate torture.

My port was accessed most painfully that first night and I proceeded to have three days of IV antibiotic. I also got a shot of nupogen each night for three nights to stimulate my bone marrow to make more white blood cells. That first night I made several requests for water, which was always promised but never came. I was too ill to be very assertive about getting my needs met, basic as they were. I was pretty dehydrated by morning when I found a bottle of water that Andrine left for me, a full 32 ounces, which I polished off fairly quickly. Finally the morning nurse was able to bring me bottled water and I haven’t lacked for it since. However, it does reinforce my belief that hospitals are not places to get well. Other than that first nurse with her empty promises of water, the nursing staff has been great.

The food was the usual foul offerings of a hospital cafeteria. They had a rating sheet that I didn’t bother to fill out because what was the point? Hospitals have always served this sort of bland nasty food. I had clearly declared “no wheat, no dairy” so they sent up a waffle and a glass of milk for breakfast as well as a tub of high fructose corn syrup to put on the waffle. I was amazed. None of that looked like food to me. Fortunately, I wasn’t hungry in the least, just astonished.

However, they don’t have any respect for the need for sleep. I was amused when I was woken up at 4:30 am by and nurse’s aid with a scale who wanted to weigh me. And then at five someone came to take my blood pressure and temperature. Then at 5:40 my nurse came in to give me IV antibiotics. I told her of my amusement at being weighed at 4:30 am. She says every morning the nurses have to prepare for the doctor’s early rounds and that’s why they wake patients up so they can get all the data to give to the doctors by 7 am. They usually start at 3:30 am, so I was spared for an extra hour of sleep.

As of today, my white count is up 4800, the neutrophil count is 2400, my temperature is 98.6 (high for me but it’s on target for most humans) and I’m ready to go home. I just have to wait for my nurse to de-access my port and I’m out of here. I have an immune system again. People no longer have to wear masks in my presence; I get to see their faces. And I feel like myself again. Life, she is good.

It was a very good thing that I got a buzz cut last Saturday. My support group members related how distressing it was to end up in the hospital 12 to 14 days after the first chemo treatment and have their hair fall out in great clumps while they felt lousy. My hair was coming out, but it was only ½ inch long. It was much easier to deal with, but a bit scratchy. Of course, I’m losing hair from every part of my body. From my legs, it’s okay. From my pubic region, well, not so okay. It’s scratchy.

I’m going to get my next chemo treatment as planned on the 6th. However, this time I’ll get a shot of Nulasta to build up my white cell count. At $7000 a pop it’s a bargain compared to three days in the hospital and a near death experience. Well, perhaps, I’m exaggerating about the NRE, but I haven’t felt that rotten in a very long time, and thank heavens for that. This cancer experience is a wild ride and it’s only just beginning.

Later on…

I’m home. Yes, this is so much better. I’m watching the sunset out of my attic window. I’m sitting at my computer.

Howard has flown off to Nashville to get trained by Al Gore to give talks on global warming. Gavi has a cold so I’m a little freaked out about using the kitchen. Jasper changed my sheets and I’m washing all of my hairy pajamas from the hospital. I expect I’ll do a lot of washing in the coming days. I’ve had the fear of infection inculcated in me in the last few days. I’m rubbing everything down with alcohol wipes. I’m washing my hand obsessively or using hand sanitizer. I’m avoiding the kitchen. I’m used to having a pretty functional immune system but right now it’s just flying at half mast.

Losing It (Hair, That Is)

I went to Havurah Shalom yesterday for services. It was the first community minyan in a while because so many 13 year olds are having bar and bat mitzvahs. If I don’t know the child, I generally give those a miss. So yesterday felt like old folks week; all the usual suspects showed up. Michelle came and sat next to me through services, which is always delightful. For one thing, she always knows what page we are on. And it's great to follow her strong clear voice as she sings the prayers. We're reading Genesis now in the Torah, the Jacob chapters. This week was Toldot. I love the Genesis stories. I guess everyone does; that’s why they are so popular for b’nai mitzvah services.

Afterward we had a potluck lunch (to which I contributed nothing – but such are the privileges one enjoys when on chemo). Everyone commented on how well I looked. I think the secret is not working. I have just enough energy to keep my private life going, but working would be too much at this point. Even at that, I go to bed early each night. And everyone was amazed I still had my hair, but I told them that it was probably my last day of hair. It was so good to be back at services. I hope I can continue to find more opportunities to attend during this chemo period.

My scalp was itching yesterday, a sure sign my hair was thinking of falling out, although I wasn’t quite there yet. I went home and called the hair dresser who shaves heads of chemo patients for free, but she wasn’t available. Teri Rowan, who used to be my next door neighbor, stopped by and brought me a green orchid just as I finished leaving a message for the hair dresser so I told her what I was up to. Teri said that she’d be happy to help and so she did. Teri is no stranger to the bald look since she shaved her head to raise money for charity for St. Baldrick’s Day. (Teri is a pediatrician and money raised from head shaving is donated to children's cancer charities.) We located a pair of scissors and David’s clippers and she had at it. I had hoped that after I had a close buzz cut I would be completely gray, but much of the red still dusted the ends. Because of my wide jaw, I had a sort of pinhead look, but it was kind of fun to be so free of hair. I immediately tried on my wigs. The red wig that I got to replace my hair was perfect. It was odd to cut off all my hair and then put it back on again without missing a beat. Then I tried on the beloved pink wig and wore that much of the evening. Wigs are a little scratch in general, but I can probably get a wig cap somewhere to mitigate that.

This morning I got out a set of bangs that I bought earlier and modified the band so that it fit more comfortably. I hacked away at them until I had a rough approximation of my usual hairstyle. They are brown (red was not an option) but they ended up looking pretty good under a hat. They are very comfortable, so that is probably going to be my first choice for everyday wear.

I went through my hat collection and I have a huge number of hats. It’s as if I’ve been saving them up for just this occasion. I have quite a number of scarves as well. This is going to be fun. At least so far I'm having fun. Ask me about during the seventh treatment.

My surgical wound where my port was put in was starting to get infected yesterday. It just wasn’t looking good and it was hard to wear clothes over it. Michelle (who is in the process of getting a master's degree in nursing) took a look at it and said to call my doctor, so I did. I got the on-call doctor and I sent a picture of it. He said to come in on Monday unless it got a lot worse – then I should go to the emergency room. I decided to use EFT (Emotional Freedom Technique) on it. It felt decidedly better this morning. I could wear clothes over it again without pain and it looked a lot less red. I can even wear my bra with the prosthetic again, which is a vast improvement. I tapped that it would be completely healed by Monday morning, so we’ll see how that goes. I’m hoping not to go up to OHSU on Monday. It just takes a lot of energy to do that and I prefer to spend energy on more delightful things.

Tasche is starting to sound pretty good on the banjo. She wants to start a folk-punk band featuring banjo. Not the first thing I would think of. Anyway, we're having fun playing banjos together. It's nice living in the same house. I can just pop into her room and we can sit and play for a bit. I so enjoy the young woman she is turning into. It's great to have a teenager around. She's the youngest of our four kids. Once she leaves the nest, that's it. We need to enjoy her while we can.

Riding in the Rusty Wagon

It’s Thanksgiving and so many blessings have come to me it’s overwhelming. I remember saying when I was younger that although I didn’t necessarily want or need to become rich, I wanted to live in a rich community. I wanted to live in a big house with lots of fun and interesting people. And I wanted to have two children. I reflected today that I have all those things. I have two wonderful sons. I live in a great big house full of fun and interesting people. We certainly experience no lack of material items. And we are rich in laughter, ideas, insight, and compassion. It’s a fabulous place to live.

Laurie Childers wrote to me today. She was one of the people who showered me with riches when I asked for contributions for my healing notebook. She and her kids made many pages that I still enjoy when I flip through it. And she compiled a CD full of songs that she wrote and songs of others that she enjoyed and passed along. She has such a generous spirit. She sent me the story of the grateful whale, thinking that I might identify with it, and I do.

We had a lovely day of cooking and preparing for the meal. I tried not to do too much, but I’ll know tomorrow whether or not I succeeded. I have a tendency to feel great, then overdo and pay the consequences the next day. I’m still tender from the port operation. I felt fabulous on Tuesday so I ran around town doing errands, vacuumed my bedroom, and took a yoga class. That night I was up much of the night in pain, despite taking pain killers and had a ragged day on Wednesday. Today I felt great again, and tried to lay low, but I kept running around, checking on the turkey (and it was a good thing I did), making stuffing, and setting the table. I loved doing it, but I never know when I’ve blown it and done too much until it’s too late.

The song “This May Be the Last Time” keeps running through my head. A few weeks ago I dyed my hair for the last time. I packed up tampons and pads, perhaps for the last time as I head into an abrupt chemically induced menopause. I washed my hair today, perhaps for the last time at its current length and color. It may fall out in the next few days. I’ve been playing When I’m Sixty-Four on the banjo: “When I get older, losing my hair, many days from now…” We are so aware of first times, but we are often unaware of last times. For instance, one always knows when it’s the first time one has sex, but how often do people know that it’s the last time they have sex?

Jasper tells me that the world is supposed to end in 2012, or at least our present concept of the world. That will be interesting, maybe even fun. I saw a cartoon in Funny Times that was a great version of the rapture, where all the bicyclists get raptured up, leaving the SUV drivers behind. I hope I’m on a bicycle when it happens. I certainly have a lot more hope for the fate of the world than I did before the last election. I no longer feel that we’re going to hell in a handbasket. Instead, I feel like we’ve switched to a vehicle that may have more of a steering capacity, perhaps more like a rusty wagon careening down a hill. It’s far from ideal, but there’s a bit more chance of avoiding utter ruin. It’s more Calvin and Hobbesish. Besides, Calvin often careened into disaster and came out relatively unscathed. May we do the same. God bless us, every one.

Fine Distractions

I took the dog in the stroller to the park today. We really are doing hospice care with this animal. She can’t see, she can’t hear, her arthritis is acting up. She’s cheerful enough and seemed to enjoy the ride. At least I can get some exercise while pushing the stroller. I probably walked a mile, not a lot by my normal standards but with chemo slowing me down, it was plenty. Once we got to the park I lifted her out and let her stagger around a bit. She sniffed here and there but was supremely uninterested in the other dogs running about. I loaded her up again and trundled her home.

I heard from my Aunt in Paris today and from my cousin in Austin. It was so delightful to get their email. It made me feel very warm and supported. I miss having family near, especially this time of year. I had such lovely parents. I miss them so. It’s great to have other family check in on me. I’m related to some very nice people.

I’m feeling well, but I tire easily; I suppose that is to be expected. I find that while I can read fiction, more complex and technical articles leave me feeling impatient and I can’t finish them. I had some case notes that I wanted to finish up and I finally just faxed the raw notes to Ginny (my co-worker who recently finished chemo) so that she could deal with them. She said that she’s starting to get her brains back and can deal with complex thought again. That was very reassuring. I lack the concentration at this point, not only because of the chemo, but because emotionally my mind is a little blown. She assures me that this is par for the course and a temporary phenomenon.

There are some fine distractions in my life. At our house we’ve instituted “Framily Frun” night. Our “framily” consists of the friends and family who live in our big, crazy house. Currently there are nine of us. We play games and last night Jasper came up with a new one called Left Foot. With all nine of us sitting in a circle, each writes a sentence at the top of a piece of paper then passes it to the left. The person on the left draws a picture to illustrate the sentence, then folds over the top part with the sentence and passes it left again to the next person who writes a sentence that explicates the drawing. Then that person folds over the drawing and passes it left again. With nine people, we had nine pages going and they all were quite hilarious. We laughed until tears came down our cheeks. It was a rousing success and we vowed to play it often.

Thanksgiving looms. We will have about ten guests and with our usual nine diners, that will be a huge table. David ordered a 26 pound turkey. I’m trying not to be in charge of anything this year but will play a supporting role, helping when I can, and taking frequent rests. David wants some help with the enormous turkey so I will act in an advisory capacity. We’ll rub it with kosher salt and bake it in the barbeque. I plan to set the table and chop vegetables for whoever wants the help. It should be fun. This is my second favorite holiday, the first favorite being Sukkot, on which Thanksgiving is based. It’s such a great excuse to get together with family and friends and eat and hang out and remember why we’re grateful. What could be better?

Indolence Becomes Me

Deborah thought I should put some pictures on my blog. I hadn't really figured out how to do that before, but she said it would be easy. It was, although I haven't figured out how to position them. The one on the left is a picture of me hooked up to the chemo drip with Howard by my side. The other picture is of me and Dr. V.

The first weekend after chemo isn’t so bad. Thursday night I was slightly panicked as I was beset by nausea despite the medications, but I rode it out and didn’t actually throw up. I was still on pain meds for the port insertion, but I was able to phase those out by Friday. I spent the Friday reading and playing the banjo. Peggy and Harry showed up because Harry had a gig with Red Brown and the Tune Stranglers. I wasn’t able to stay up past 8 pm, I was so tired. I went to sleep almost immediately, then woke up at 3 am and pottered around for a couple of hours. I went back to sleep at 5 am and slept until 9:30, quite an amazing accomplishment for me, basically 11 hours of sleep. Plus I had a nap in the earlier in the afternoon. It felt great.

I moved slowly through the day, staying in my pink pajamas. I was tired, a little dizzy, but basically I felt pretty good. Peggy and I visited. She was kind enough to put some strings on my ukulele so I’m ready to start playing that again.

It turns out indolence becomes me. I could get used to this pace of life. It’s 8:30 and I’m ready for bed again. I called Deborah this evening. She and I hatched a plan to go to Mexico when I’m all done with chemo. That will be a while from now, but I may be out of a job at that point anyway and will have the time to do it. Vamos a la playa. Sounds good to me. I’ve been so driven for so long.

I never wrote about the celebration on Tuesday, but it was fun to see everyone again. I wrote a proposal for to get Clackamas County to pay for transitional housing for people coming out of prison and jail and much to my surprise, the powers that be decided to go for it and in record time. They not only funded transitional housing to the tune of half a million dollars per year, they also funded a recovery mentor program, based on the model that Central City Concern pioneered. I worked with the Recovery Association Project and met with the Clackamas Core Team to get this project underway. We wrote the proposal to get the county to issue an RFP (request for proposal) and then looked for organizations who could actually run such a program since RAP wasn't in that sort of business. (We were in the business of advocating for recovery resources, not running programs.) We got MACG organizations involved, did some political agitating, staged an action, met with a lot of people, did a bunch of research, and by golly, it's happening. So on Tuesday we made some speeches and congratulated ourselves and then went home. I was sad to think that I would miss our next RAP core team meeting next Monday, but I’m if I’m feeling up to it, I’m going to go. It’s just too great a group to miss. I'm just so proud to be a part of this group. We've all worked incredibly hard and many people will benefit.

First Chemo Treatment

Today was the first chemo treatment. It was okay. I’m a little spacey, but then again, I had surgery yesterday to put in the port and I’m still on pain killers. Oddly enough, the surgery for the port was more painful than the mastectomy. Go figure. It was really painful last night, but I did a lot of tapping to bring down the pain and speed the healing. By the time I got to NWCS, where I’m getting chemo, I was feeling quite good.

The nurse at the NWCS couldn’t have been nicer. She’s been doing this forever and she’s a kind and compassionate soul. She also is highly competent. She knew exactly what she was doing and it was very reassuring. Howard and Andrine went along with me to treatment and spent the first couple of hours there, then Howard had to leave for an eye appointment and Andrine had to go to work, so I just hung out reading House Beautiful, only this time I actually got to read it because I had time to do so. It was cool. I’m normally so rushed I skim everything. I loved just taking the time to actually read stuff that isn’t even terribly important to the future of the world. Jasper came and picked me up. I’ve really enjoyed hanging out with him these past few weeks. That’s another blessing, a chance to spend more time with my family.

But it’s all good. I’m enjoying life in slow-mo. Perhaps this is what it’s all about. I get from my high self committee that I don’t need chemo on a physical level, but I do on a spiritual level, and that it’s preparing me for the next step, whatever that is. It is a nice added benefit that it will probably take care of the existing LCIS (lobular carcinoma in situ) in the remaining breast, if indeed there’s any LCIS left there after all the tapping and meditation.

Anyway, it’s a chance to work on myself for a while. I just have to let go of all expectations right now and let the universe unfold in all its wonder. People keep telling me that it’s a bummer to do chemo, but I’m finding that hard to believe. It’s certainly a journey, and no doubt there will be challenges along the way, but it all seems good to me. I know this episode in my life has a lot to do with learning to slow down, to be patient with myself and others, and to learn to be a human being instead of a human doing.

In fact, it may just be possible that it isn’t up to me to save the world. God knows I’ve tried, but I exhausted myself in the process. Maybe it’s enough just to heal myself right now.

So I’m looking at this as a very special time, a time that I’m going relish, despite all the potential problems that may arise. I have confidence that I can use EFT to tap away most of them, and if not, well, then it will just be more lessons in letting go of the illusion of control.

I came home and took my very old dog on a very slow walk. She’s ancient and inches along. In the past that has made me crazy, but today I was moving slowly enough that I could inch along with her. I think I shall take her on a slow-mo walk every day of decent weather this winter. I really enjoyed being outside. John Rowen was out in his garden, working away and we chatted as we inched our way past him. Then Maggie sat down in his driveway and refused to budge so I had to persuade her to go back home since I couldn’t carry her. The way home was even slower. I reflected upon what a young idiot she used to be, running all over the place, barking at squirrels, and attacking large dogs. She was used to be good for at least five miles as a youngster and now she was unable to make it around the block. Sic transit gloria canicula.

A Port in a Storm

Rain blew sideways yesterday and the wind tore the leaves off the trees. Winter was stomping around Portland, although the calendar says it’s five weeks too early. I was high atop Pill Hill, ensconced in a brick and mortar beehive of medical activity waiting (and waiting) for a port to be put in.

The port is a device that will allow me to get chemo and blood draws without getting poked in the arm. It feeds directly into the heart, which sounds alarming. However, since I have tiny, deep, elusive veins, getting poked over and over again each time someone wanted to start an IV sounded a lot more alarming.

I got there at 9:30 as requested and was given a gown to wear that was meant for someone at least 150 heavier than me. I dutifully put it on, got into bed, and started reading my book. The nurse started an IV on me (after getting embarassed because she couldn't get it on the first try - I assured her she was doing fine and that I was used to multiple needle sticks. She got it on the second try.) Then I got a lot of reading done. Fortunately, I had a good book. I didn’t have anyone come by to talk to me about surgery until 12:30. I was asked all sorts of questions which emphasized to me just how healthy I really am (except for a touch of cancer). I could say “no” to a long list of ailments. The only thing that popped up was mild asthma, mild anemia, and a history of sub-acute thyroiditis. I felt very grateful for such a long disease-free existence.

It turns out that I didn’t have to have general anesthesia for this procedure. I was delighted to hear that. I couldn’t take valium (it makes me anxious instead of calming me down). I asked for something to make me a little loopy, but to use a light touch. They gave me some sort of narcotic. I was awake during the operation and that was fine. Dr. Pommier kept assuring me that I wouldn’t remember a thing about it since I had been given drugs that induce amnesia, but it turns out that I remembered everything. I listened to my media player and to the conversations in the OR. Dr. P. leaned against me as he worked, a pressure that I found oddly comforting. I could feel a lot of poking around as they put in the device, but not a sharp poking around since I had a local anesthetic. I couldn’t see anything because I had a cover over my face, but I was happy enough. At the end the resident and the med student cheerfully mopped all the betadine off of me, from neck to navel, which was an odd experience. I was aware of being just a body on a table, not particularly concerned about my nakedness as they mopped away. They were pretty sure I wouldn’t remember and therefore there was a certain freedom that we all felt about the situation.

I didn’t need to go to the recovery room so Dr. P. himself wheeled my bed back to Short Stay. Howard and Jasper joined me there. Howard is now a bi-ped. He got his cast off yesterday and his foot bone is healed. He’s got a walking boot and he’s using a cane, which is a vast improvement over crutches. It’s such a relief. I really need him to be more functional than he has been of late.

We waited around for a chest x-ray, which came to me instead of me going to it. Dr. P. got the results within 20 minutes and read it on the computer in front of me and declared the port good and properly placed. Howard and Jasper came over for a look and he gave them a tour of my insides. I wanted to get up and take the tour as well, but it seemed like a lot of bother at the time, especially as I was still hooked up to an IV.

The papers were signed, I was released, the IV was taken out, I got dressed again and Jasper drove us home. I discovered that having a port put in was a lot more painful than having a mastectomy, at least for me. Pain medication seemed like a very good idea. I had sort of a rough night, but I used my wakefulness as a chance to tap and reprogram myself. After all, I have quite the adventure coming up today. It will be my first day of chemo. I'm a little apprehensive since I haven't had a lot of time to heal fromt the port, but hopefully I'll do well. I heard Dr. P tell his resident in the OR that usually, one likes to have a few days between having the port put in and chemo so that there is more of an opportunity to heal, especially since the white blood cell count will be down. However, it's not unusual to do it this way either. I hope my normally strong constitution will see me through.

So here’s the revised chemo schedule:
November 16th
December 7th
December 28th
January 18th
February 8th
March 1st

These are all on Thursday, although I may try to move it up to a Wednesday. I’ll have two days following chemo that I’ll supposedly feel okay due to an infusion of steroids, then a crash for a couple of days. It would be better to crash on the weekend when there are more people present.
I talked to Lori at Beaumont Health today about doing hydros following chemo. Those are supposed to help the digestive system and stimulate the immune system. I scheduled one for Friday. She said that people tend to do a lot better when they do hydros three times a week. I know that we did them when I had sub-acute thyroiditis and they seemed to help.

I talked to a woman at Trinity Hair who will shave my head for free when I start losing my hair. She says that she has terminal breast cancer (what a way to think of it!) and this is what she’s doing to help other cancer patients. She was in business with her daughters but they are moving to their own hair salon, and it sounds as if there is some sort of rift there. I’m not quite sure what I’ll be walking into, but she sounded nice enough.

Sylvia called to ask who was lined up to take care of me during chemo and I didn’t have an answer. I don’t know what it will be like. I don’t know what I’ll feel like eating, or if I’ll feel like eating. Barbara says just to eat what I feel like eating and don’t adhere to my rather strict dietary rules. It’s all uncharted territory at this point. I’m tapping to keep a positive attitude.

I bought some pink pajamas yesterday that will be soft and warm to wear. I also got a new dusty rose fleece vest. Andrine bought me a bunch of pink pants at the thrift store during a half-off sale. The problem is, they are size 14. I’ve lost a lot of weight since my size 14 days, about 18 pounds, and only 1.5 pounds of that was due to the mastectomy. I suppose there are some compensations to having cancer. You know, God, I did ask to lose weight, but I don’t know if this is the method I had in mind. I’m always amazed at God’s warped sense of humor.

Howard is going to get his cast off tomorrow and we’ll see if he has to be recast. I took him through some tapping on that, over the phone. It’s amazing I hadn’t worked on that issue with him before, but that indicates my level of self-involvement at this point. I intend to reach out more to others. It does me good. It helps me practice EFT and it helps other people to work on their issues. I had a chance to work with one of the women in my support group about her reservations about doing treatment. It really helped me to get in touch with her issues because they were my issues as well. She left feeling a lot lighter and happier. I felt a lot better too.
I just called OHSU and found out that I have to have general anesthetic when I have my port put in tomorrow. This is going to take a lot of tapping. I really dislike general anesthetic. It takes weeks to clear out of my system. I suppose, though, if we’re going to play the Pollyanna Glad Game, I’ll be so out of it from the chemo, I won’t necessarily notice how out of it I’ll be from the anesthetic.

What a disease this is. I’m talking to so many women with it and there are so many stories. Heather called today. She’s all of twenty-seven and has survived a double mastectomy and chemo. She recently developed eye problems from tamoxifen and had to stop taking it. She was informed today that since she still has a lot of estrogen (which is totally normal for someone her age but a bad thing when one has breast cancer) she will have to have an oophorectomy and possibly a hysterectomy. I don’t get it. It seems so unfair, but I suppose this isn’t about fair. I’m not sure what it is about. She is so sweet and to see her go through one more trial is so difficult. I wish I could help in some way.

Tonight is the Transitional Housing Celebration in West Lynn. I’ll be giving a little speech since I was the one who wrote the proposal. I’m going to speak off the cuff, which will be something new for me. I have three minutes on very packed agenda. It’s a little nerve-racking, but it will be fun. The last time I spoke there was at our action on April 27th, before my diagnosis. It's been a long seven months.

The Swing of the Pendulum

I’m continuing to teeter back and forth about what kind of chemo to choose, AC or FEC. I spent hours researching last night and got to sleep very late as a result.

Here’s the situation: Multifocal invasive ductal carcinoma leading to mastectomy. The pathology report showed a 1.7 cm tumor and a .9 tumor, both grade 3, both HER2NEU negative, ER and PR positive. There was also extensive angio-lymphatic invasion. However, the good news is that all nodes were negative.

Add to mix some concern about my heart stemming from a family history of aortic aneurisms. Plus my mother died of congestive heart failure following AC for breast cancer, but she had a lot of AC. That was the only chemotherapy available then and she went through it three times. And she was stage 4 when she was first diagnosed.

The choices according the one oncologist, Dr. L.:
AC plus taxol, four sessions of each, two weeks apart or
Taxotere plus Cytoxin, eight sessions, two weeks apart

The choices according to another oncologist, Dr. V. (the one I prefer):
AC only for four sessions, three weeks apart or
FEC (fluorourcil, epirubicin, cyclophosphamine) for six sessions, three weeks apart.

The Disease Free Survival (DFS) rates (assuming I follow chemo with hormone therapy afterwards for five years) are the same for AC and FEC. FEC has more side effects, but half the risk of heart damage or leukemia several years down the road.

AC+T improves my DFS by 2%. Taxotere is relatively new and there are no longitudinal studies to know what the risks really are more than five years down the road. However, Dr. L. prefers it to AC+T for me due to the heart risks of AC. He says that since there were two tumors, the aggregate size is really >2cm, which technically puts me at a stage 2, and therefore needing a more aggressive regimen

Dr. V. thinks I'm still at stage one, if only barely. Dr. V. thinks that AC+T or T+C is overkill at this point. I tend to agee. I'm not crazy about doing chemo at all, but I've gone to great lengths to assemble a medical team that I trust and can rely upon. They ALL agree that I need to do chemo. Dr. V. recommends FEC, with AC as a second choice but is leaving the ultimate decision to me.

I keep swinging back and forth. I have until Thursday to truly make up my mind. At this point, I'm tending towards FEC, despite the fact that there are more short term side effects associated with it and it will go on a full six weeks longer than AC. Having spent six weeks recovering from a mastectomy, I have a great awareness just how long six weeks can be. I would really like to get back on my feet and get my life back again sooner rather than later, but perhaps I'm too impatient.

I keep taking out my pendulum and checking and it swings towards FEC, or at least it has the last three days in a row. After all this weighing and sifting evidence, I seem to be relying on a pendulum. My left brain is protesting, but all signs are pointing in the same direction, much as I would like to have the shorter course.

Moira (from the BC group) called me last night and gave me information about Look Good, Feel Better, a program for women with cancer to help them with make up and wigs. They provide free cosmetics and cosmetologists volunteer their time to show women how to apply make up. I think I shall check them out.

Lynn (from the BC group) is coming over tomorrow to do some EFT with me. We’re going to work on her dread of going to radiation treatment. However, she said she’s already doing much better with it since our group on Thursday. She’s working out a reward system for herself and listening to meditation tapes and giving herself positive suggestions. I don’t know if there’s much more I can add to the mix, she’s doing so well with changing her attitude for the better. However, it will be great to see her. It’s so important for all of us to help each other through this and keep a positive attitude.

Despite my quandary about which treatment to choose, I’m doing much better in terms of mood and outlook. The election cheered me up no end. I can stand to read the newspaper and listen to the news again. Oregon now has a democratic senate, house, and governor, so the era a gridlock is over and we see encouraging signs of change all over. And I’m so happy to know our country has a chance to move forward again towards peace and prosperity.

I know that I’m safe, I know that I will be fine. I just have to give up the illusion of control. I am surrounded by love and peace. My support group is amazing and I love being with the women that come there. I draw inspiration from them.

The second MRI showed no cancer in the left breast so I’m good to go for chemo. The pink wig is at the ready, my house is clean and organized, I have lots of books and films to keep me entertained. I have two banjos to play whenever I want. I have friends who are willing to hang out with me when I need it and leave me to myself when I need it. Life is good. So I’ll feel a little ill for a while. I’ve had the flu before and I survived just fine.

The people I work with couldn’t be nicer or more supportive. I’m taking leave and it turns out that I’m eligible for supplemental disability, having signed up for it last year. I’ll get 120% of my salary after a waiting period of 30 days. It’s nothing short of amazing. If this had happened three years ago or more when I had no health insurance or a dependable income stream, it would have been horrible. The universe is giving me many gifts; I just have to open myself enough to understand how blessed I really am.

Meditation versus Medication

It’s been one appointment after another these past couple of days. I went it and got a mugga, which is a test to find out how much blood my heart pumps. Bruce, the nurse, drew my blood and handed it over to Rick, a nuclear scientist, who combined it with a couple of different radioactive things. After quite a wait, he reinjected it into my IV, then took lots of pictures. He was a very nice middle aged man with an avuncular demeanor. After the terrors of the MRI, this test was a piece of cake for me. It didn’t bother me a bit. Howard sat in the room with us as I was put into some sort of supersonic contraption that only a mad scientist could dream up, but it wasn't an enclosed space like the MRI. The whole process took a couple of hours from blood draw to finish, but it was okay.

Then I had a chest x-ray, the work of a few minutes, and then I was out of there. Howard had an appointment elsewhere so Jasper picked him up and I took the bus home. I was feeling pretty good so I ran some errands and then went to our communication class.

This morning I had another MRI scheduled at 6:30 am. The idea was to see if the MRI would be different at a different part of my menstrual cycle. Sam, the nurse, put my IV in so that I could have some sort of magnetic material injected into my vein. Sam got it on the first try, much to my relief since I have tiny veins. Then I got onto the table, got positioned and the tech pushed the button so that I would roll into the machine. I go completely panicked. I yelled for her to get me out. I just couldn’t do it. The tech was very sympathetic. She said about 20% of people are claustrophobic and panic like that. Ah, it has a name, claustrophobia. That makes sense. I really don’t like small spaces, never have. Sam came in and asked me if I wanted drugs and I said I couldn’t do benzodiazepines at all. I was ready to bolt out the door. I was so sure that I couldn’t be there. Sam said that we could try benadryl and we did and that worked, thank heaven. I was still pretty freaked out, but I was sleepy and I could stay in the machine for the requisite 45 minutes. The got the images they needed, then the tech helped me down, I got dressed and I was home by 9am.

I was pretty sleepy. My dear friend Sandy Bradley showed up just as I was drifting off so I went to hang out with her for a while, then staggered back to bed for another nap. When I awoke, at about 1 pm I realized that my phone was flashing that I had a message. It had come in at 11:45. It was the doctors office telling me that the MRI results were in and that I should page the doctor. Dr. P. informed me that the new MRI looked considerably better than the one last week, but that they wanted to do an ultrasound immediately because there was one small spot to check out. Sandy drove me up there and we waited and chatted amiably until they could do the ultrasound. The ultrasound showed nothing suspicious at all.

So, after more waiting around, I signed the consent form to have a port put in next Wednesday. I let Dr. V. know what was going on, and scheduled chemo for next Thursday, November 16th. All of the sudden, it’s all falling into place.

Sandy and I fixed dinner, and then I ran off to my support group. I really wanted to spend the evening with her, but my group is so amazing, and I won’t be able to go for the next couple of weeks since I’ll be having chemo on next Thursday and the Thursday after that is Thanksgiving.

I was so grateful that Dr. K was able to read my MRI so quickly and that they were able to fit me into a crowded schedule today. I could still be fretting about this instead of moving ahead. It's so odd to be relieved to be moving towards chemo. I have the hardest time navigating these emotional ups and downs. I'm trying to stay calm and meditate, but it's not always possible. Sometimes you have to medicate instead of meditate.

Twists and Turns

I got the results of the MRI today (finally). It was abnormal, which means chemo is on hold, and I’m going to have another MRI at 6:30 Thursday morning, I guess because I love them so. Do not pass go, do not collect $200. If this one is positive too, it’s another round of biopsies. I don’t want to contemplate it. I’m trying to think positive thoughts. It’s just a false positive. MRIs are famous for false positives. Everything is fine in that breast. It’s just that I was premenstrual when the first MRI was taken and the next one I will be post menstrual. It’s a false alarm.

Whatever it is, it’s going to delay the start of chemo. I looked at my pink wig with longing today. Best case scenario, I’ll start next week instead. Worst case scenario (heaven forbid) I’ll have a lumpectomy followed by radiation and then chemo. Or a mastectomy. We’re still driving upside down here. It's weird, all the twists and turns. Now I want to start chemo and last week I was fighting hard against it.

The good news for today is that I found out today that I can apply for disability. Evidently I signed up for it last year. There’s a 30 day waiting period from the time one quits working, but it’s a lot better than nothing. It should pay 70% of my salary. I will talk to my doctor about that tomorrow. If he’s willing to sign the paperwork, I’ll do it. My little mind is pretty blown at this point and I need to concentrate on getting well, not on working. I handed my whole case load over to my co-worker today who seemed happy to take it on. She’s recovering well from her chemo and even has a light sprinkling of hair growing in. I felt hopeful being around her and glad that she has the energy to take on the work that I’m leaving behind. That’s a good sign.

My thyroid is feeling better now. I’ll need to take it easy after the next MRI in hopes of not stressing it out again. I’m pleased that I was able to shake off the thyroiditis; my body seems to respond well to rest and relaxation. Who woulda thunk?

Losing farther, losing faster

I talked to my naturopath on Friday. Her intuitive take was that AC would be preferable. She said that she would be able to mitigate the side effects. It also has the advantage being only four cycles instead of six so the last treatment would be on January 11th, instead of February 22nd. That’s a big difference. She said to sit with the information for a while and find out which one felt better to me. I did, and now I’m tending towards AC.

Realizing that I’m in the mode of getting my ducks in a row for this process, I had David drive me to the wig place out on 182nd to buy a wig that looks a lot like my own hair. The woman who owned the shop didn’t charge me for it, saying that it had already been purchased by someone who wished to remain anonymous. I suspect Dave is the anonymous benefactor. I also bought some bangs that can fit under a hat so I don’t look quite so bald. Wigs can sort of be scratchy, so the hat alternative will be important as well. Still, I'm looking forward to the pink wig. I can't wait to shave off my hair. (Is that weird, or what?) Andrine found me some great pink socks that have a skeleton and crossbones wearing a pink bow - which will be perfect to wear during the chemo sessions.

A part of me really wants be done by the end of January so that I can go see Jasper’s play in San Diego. I’m trying not to count on it because there have been so many unpleasant surprises throughout this whole process I’ve had to give up any illusions of control.

Wolf sent me a poem at the outset of this process, when I first asked for notebook pages from friends and family to help me through this time. It’s by Elizabeth Bishop. I find myself turning to it over and over.

One Art

The art of losing isn’t hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.

Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn’t hard to master.

Then practice losing farther, losing faster;
places, and names, and where it was you meant
to travel. None of these will bring disaster.

I lost my mother’s watch. And look! My last, or
next-to-last, of three loved houses went.
The art of losing isn’t hard to master.

I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn’t a disaster.

-Even losing you (the joking voice, a gesture
I love) I shan’t have lied. It’s evident
the art of losing’s not to hard to master
though it may look like (Write it!) like disaster.

-Elizabeth Bishop

One of the manifestations of the stress that has been engendered by my diagnosis is my propensity to lose objects. Things disappear in a maddening fashion, much more frequently than they used to. That’s when I turn to the poem. I practice losing farther, losing faster. I may lose the trip to San Diego. The art of losing isn't hard to master.

Meanwhile, I continue to gain friends and that is a blessing. And old ones are finding their way to my door. My next door neighbor from Port Townsend, Michael, visited this morning for breakfast and we had a lovely discussion, mostly about child rearing, which he’s in the midst of. Suddenly, in his fifties, he finds himself the father of two young children. I felt like a wise old grandmother as I gave him all sort of tips for dealing with little ones, different strategies for dealing with subjects like Halloween candy, a time out versus a“happy chair,”* and how to communicate using non-violent communication (NVC) techniques. Michael was very excited by the NVC information.

My friend Larry Levine (no relation to Michael) and his daughters showed up yesterday. I went to Russia with him in a group led by Patch Adams. We performed as clowns at orphanages and hospitals. That was during the era I had dyed magenta hair and wore the pink wig. His daughters are now living in Portland. They are such a sweet family. It was so nice to see them again. They live in West Virginia on a remote mountain top. He’s lived there since 1972. I can’t imagine such stability. The girls were mostly home schooled. I really appreciate that he’s been so good at keeping up communication with me over the years.

Next week I’ll have a dizzying round of medical appointments. I’ve got to get a chest x-ray, a heart scan, and a port put in, as well as put together a plan with my naturopathic oncologist to help me survive this next episode. It promises to be a busy week. If all goes well, I can start on Thursday. The big question is whether my last MRI is clear. I had one last Tuesday and OHSU was supposed to read it by Thursday. On Friday it still hadn’t been read so I hope to hear soon. If it’s not clear, then it’s another round of biopsies and more delays. I’m learning to relax and have no expectations and, as I said, give up all illusions of control. I can either fight it or flow with it.
_______________

*Instead of a time out, one can ask a child to sit in the "happy chair" until he or she feels happy. Similarly, as the adult in charge, if you find yourself getting stressed out or yelling at the kids, you can put yourself in the happy chair until you calm down and feel happier. And that models the behavior for the kids. If the kid gets out of the happy chair before they are happy, just ask them if they are happy. If they say "no" ask them to sit some more until they are happy. This generally works better than a time out because they don't feel isolated. And it teaches them an internal locus of control. They learn to calm themselves down.

Fixing My House

It’s the wee hours of the morning and I can’t sleep. I had my appointment with Dr. Van Ho yesterday. He agreed with Dr. Luoh that chemotherapy was warranted also. He seems to think that AC+T is overkill in my case since the taxol would only yield a 1% gain in DFS (disease free status after 10 years) compared to the toxicity factor. He is proposing AC every three weeks for four cycles or FEC every three weeks for six cycles. He says FEC is still cardio-toxic but has about half the risks of AC. He prefers FEC for a number of reasons for me, and having gone online and done a little research, I believe that FEC may be the way to go. He’s not so crazy about the T+C option that Dr. Luoh proposed.

I’d like to get started ASAP. If I did, here would be my ideal dates:
Nov. 8
Nov. 29
Dec. 20
Jan. 10
Jan. 31
Feb. 21

AC is tempting since I could have the last treatment by January 10th, but I do think FEC the best option.

I need to get a chest x-ray to make sure my lungs are clear, a bone test, and a heart test, all of which I will schedule ASAP.

While I liked Dr. Luoh, I really liked Dr. Van Ho. He spent a lot of time with David and me, explaining options and answering questions. And he’s not so hostile to naturopathy. In fact, he refers patients to A Woman’s Time and has worked with two of the naturopaths there (although not Barbara MacDonald, who is my naturopath). And NW Cancer Specialist is much closer to our house, which is a huge factor for me. The less driving I have to do, the better.

Anyway, I’m working on getting this put together in the next few days. I’d like to start this soon. The sooner I can start this, the sooner I can end it.

He also wants to check out my estrogen status to see where I am with menopause to get a baseline in order to figure out whether I need tamoxifen (for pre-menopausal women) or an aromatase inhibitor (for post-menopausal women) since I seem to be on the cusp. He’s not just going to assume that because I’m still bleeding I’m pre-menopausal, which is wise of him. Anyway, I liked his thoroughness. David went with me to the appointment and came away with a good impression as well.

I spent Wednesday running errands in anticipation of chemo. I found the pink wig in the garage, finally. I bought a couple more bras that could handle the prosthetic. I laid in some food supplies, supplements, and green tea. I went to a thrift store and bought some pink clothes to go with the wig. I’ll probably buy the more attractive wig I found that looks like me on a good hair day before I lose all my hair.

I went to my support group last night and talked about my decisions about chemotherapy. There were only four of us there and two had been through it already and one was in the midst of it. They all had their horror stories of emergency room visits and hospitalizations due to chemotherapy. This promises to be quite challenging. I have no illusions about how difficult it will be. I have really tried to avoid it, but I have come to realize this is the best way of maximizing my survival.

My thyroid is acting up right now. I had intended to work yesterday but I awoke to a sore throat and a swollen thyroid, probably brought on by the stress of the MRI. I have had subacute thyroiditis in the past, which made me very ill for a very long time (extreme fatigue, five or six weeks of bed rest, 10 days of which was spent spiking a fever of over 103 degrees), so I listen when my body exhibits these symptoms. I didn’t go to work yesterday and I’ll take today off as well. It’s just what I need to do to get through this. I can’t risk getting really ill at this point. I have such a tendency to work even when I feel horrible, and it’s not good. Finally, my thyroid has found a way of getting my attention. I get obsessive about work sometimes. I would really like to be there. However, I’m finding that even when I’m there, I’m not really there yet. I still have some healing left to do from the surgery and now I have to gear up for chemo, which involves a lot of phone calls and medical appointments and tests. Having cancer is a full time job. It’s getting hard to cram in other work as well.

I put off surgery and treatment for a long time in order to wait for my co-worker to get through her chemo. Since I have a fast-growing type of cancer, that may not have been the wisest decision, but I was doing my best to balance the needs of work and my personal health as well. Everyone at work kept insisting that I should put my health first, so it’s not like the pressure was coming from anyone but me. I guess I’m finally doing putting my health first, but it’s still difficult to do.

I had a dream a few nights ago. I was fixing my house, something that had been difficult before but now I was finding it very easy to do. I repaired the front porch and marveled at how smoothly it went. Then I painted the house and it only took a few hours. Gavi was very young and was wandering around. I realized that I couldn’t take care of anyone else if I was going to fix the house. When I would look to find him, I saw that other people were able to take care of him.

So I’m fixing the house of my spirit, this physical body, and I guess I really have to trust that other people can fill in for me when I am unable to work at my regular job (and child care was my most important job for quite a long period of my life so I get the metaphor – thank you, subconscious). As much as I would like to be working at full tilt at my job (or even half tilt) that’s not exactly realistic.