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.