Dances with Cancer

Preparing for the Next Dive Tomorrow is my next infusion, and I have to admit: I'm not looking forward to it at all. Hopefully this is the one that will start being easier to breeze through. But it does seem that the roads in Chemoworld are very poorly paved, so I expect a series of bumps and jostling. Three weeks after this infusion, I go for a CT scan.  That should happen in three weeks, and then we will actually have information. Is the chemo working? Do we keep going on this path? The day of the CT results is the one I worry about the most.  I'm not really sure what to say here. This thing I have to do is looming, and so I will do it. It doesn't feel brave or special or courageous to be doing this. I just have to get there, have to get it done. Maybe now I'll get a break and be able to rebuild my strength and my voice. So I trust my doctor, and so I prepare to dive in to the next chemo. The distance seems higher, and the amount o liquid at the bottom seems lower. Bu...

 High Atop the Palisades There used to be an amazing amusement part just across the river from New York, called Palisades Amusement Park.It had the best theme song: Palisades has the rides, Palisade has the fun, Come on over. Shows and dancing are free, so's the parking so gee, Come on over. Palisades from coast to coast Where a dime buys the most Palisades Amusement Park Swings all day and after dark. Ride the coaster, get cool in the waves in the pool You'll have fun so come on over. The most amazing feature of Palisades was the huge roller coaster, perched right on the edge of the cliff. When the car got to the top of the hill and curved to come back down, the riders could see all the way down to the river. It was terrifying.  But now that the whole park is gone, I'm wondering: has it relocated to Chemoworld? Because much of my days seem to be spent riding the rides. No, not that anything exciting is happening. But I go from feeling better to feeling worse in the blink o...

 Growing Stronger The new dose of chemo that I took on the 22nd seems to be the right amount. Although the week after was still pretty rough, it was rough mostly because of how exhausted and out of it I felt. The reality is, I am starting to feel better. I am having more energy, walking around the house more, going down the front stairs after the mail and newspaper without a thought. Everything is still a major effort, and take a lot of thought. I may decide to do something, and will then spend 15 minutes in a bit of a fog, trying to get myself to do it. But these fogs are becoming shorter. I see light at the end of the tunnel. The goal here, of course is that the chemo is working to reduce the cancer enough so I can survive, and that, as I get stronger and more able to deal with it I will be able to have an infusion and go back to my life. Until today, I haven't really believed that could happen. Of course, the Jew inside me says I shouldn't be typing any of this, for fear of ...

 Struggling It has been a rough day. I am not feeling all that badly, actually. I'm eating and though I don't think it's having an effect yet, it does feel good to eat.  And some wonderful things have happened - I got to sit outside yesterday with Julia, who has been an amazing support, and with Miriam, who has brought daffodils and sent encouraging texts and just been the same wonderful friend she has been for the last four plus decades. Today, we had breakfast with Sabastian and Jamie - something we haven't done in a couple months. They sat at the bottom of the front stairs, where we set up a table and chairs, and we sat up on the glider with TV trays. It was wonderful, and felt very familiar. And so great to see the two of them, both so happy, talking about the wedding and their plans. But it has been a hard day because I have felt so trapped. I spent most of the day in our bedroom, reclining on the bed, watching weird shit on TV and dealing with the weirdness that i...

 Chemo Three, Day Three When I went in for Chemo Three, there was quite a bit of confusion as to what we were ding. I had hurt my back, so walking was difficult. But the morning of the infusion, it turned out I had neglected to go get blood work done, so I had to go first to the lab, then to the Infusion Clinic. No way I could walk all that far, so Tom get a wheelchair to push me in.  Showing up in a wheelchair was a red flag for the nurses - they felt it might mean I was too weak for the infusion. So after getting the results of the blood test, my doctor called me, and we discussed what to do. We both agreed that I had been stronger the day before, and that it was okay to proceed. She slightly lowered the dose of one of the drugs, and we went forward with the infusion. It definitely was not as bad as last time. I felt pretty sick and out of it on Tuesday, and have had zero appetite for both Tuesday and Wednesday. i have had to force myself to eat one of the only things I coul...

  Chemo Number Three [SPOILER ALERT: Some readers may find one of the pictures in this post upsetting. If you don't want to see what chemo has done to me, stop reading.] I went in for Chemo Number Three today, and it started out as a real cluster fuck. I had forgotten that I am supposed to get lab work done before each session - and since, up until yesterday, I had been feeling so badly, it just hadn't happened. So instead of going in at 8:30, I showed up at Kaiser at 8 AM to get a blood draw. The lab can process the results in about an hour, so we figured it would not screw up the timing too much.  My back has been pretty sore, so after walking to the lab, we decided that I should use a push chair, and Tom could shove me around (like always.)  We went up to the Infusion Center, and once the lab results came in, there was great consternation. My white blood cell count had jumped up alarmingly, and my bilirubin numbers were somewhat elevated as well. Because of the GI issu...

 Reflections on How I'm Doing I'm actually feeling pretty good today. For the first time in three weeks, I haven't fallen asleep multiple times during the morning and early afternoon - in fact, I have been awake since getting up around 6.  My GI system is finally under control, and I am able to use it with some fair degree of confidence, and without pain. My energy is still quite low, and yet, I have done many projects today. I've been cleaning out and organizing the drawers where our dining room linens are kept, and we have gotten rid of a ton of stuff. I've been working on fixing some antique pocket watches that I have had for years. I'm still working on emptying out and cleaning the china cabinet in the dining room, and I am finding a lot of "treasures" that are also on their way out the door. I'm not sure, for example, why I have two cups, a vase and a covered....something, all of which have frogs on them. I found an old container shaped like a...

 So It's Not an Excursion I'm now really wrapping my brain around the whole idea of what exactly it is that I'm doing here. My view of Chemoworld has been the same as most people's, and my understanding of it has been as limited as anyone's. I have been thinking that the doctors take the chemo and blast me with it, to get the cancer to back off. Once that is successfully done, I get regular CT scans to see what the cancer is doing (if anything) and, if it starts acting up, I get blasted again. I was imaging a life where I get incredibly sick, then build back my strength, then eventually get sick again, then build back again.  But what I now realize is that the treatment of my cancer is not going to be a traditional treatment, to try and eradicate the cancer. I knew this from the start, but I didn't really understand what it meant, I guess. So I have a new way of thinking about my cancer: it isn't a traditional cancer diagnosis, it's more like HIV. Think ...

  Marginally Better Each day, it is starting to feel like things are finally getting better. My weight has stabilized, and I am hoping to be able to gain some of it back. I am able to swallow, so eating is again possible. I'm sleeping better too. My energy level is still incredibly low, however. And I have to admit to being scared: I am supposed to go for Round Three on the 22nd - just six days from today. I can't imagine what it will be like, and I hate the idea of losing what little ground I have gained. I've written to my oncologist and asked if there is a way this next round could be pushed back somewhat, just to give me a chance to feel stronger. So I find myself doing more thinking about things that are not Chemoworld related. In my mind, I'm reorganizing our china cabinet, with is just chock a block full of stuff. I love having service for 30 in the Fuji Victoria china that I love ("made in Occupied Japan") but it takes up a LOT of room. Every time we h...

  Big Doings As I move along here through Chemoworld, things do change, and the further out I get from the last chemo, the better everything seems to me. And as my energy levels slowly come back, I start feeling more and more like a human. I haven't been able to sleep very much for several days, but last night I finally did get a pretty good night's rest, and it made me feel even more human. My GI system is still kind of screwed up, but the lesions and crap growing in my mouth and throat are going away with a new treatment. It feels amazing to run my tongue around the inside of my mouth and have it feel.... normal. So Tom and I have taken a couple walks this week. For me, a "walk" is going outside, down the stairs, and getting to the sidewalk. Then I generally turn back and retrace my steps. I'll bet that doesn't sound exciting to readers of this blog, but trust me - it's a big deal. The biggest thing that happened was this morning. I got up around 5:30 an...

 None of This is Easy It has been a rough few days, with yesterday and today probably being the hardest of this round. I don't really want to go into details, but suffice it to say: spending days thinking about one part of your body gets really really old, really really fast. It's not totally resolved, but things are moving in the right direction. My energy levels also appear to be returning somewhat, in that I am not just sleeping constantly, and am starting to feel a little bored. I'm still incredibly weak, but I feel a little more like myself again. Everyone knows that Chemoworld is hard. Everyone (mostly people who have never visited here) told that, "it's going to be really awful, but you'll get through it." I still believe they are right on both counts. But "getting through it" is incredibly difficult. I have had plenty of moments of despair, of wondering how I would ever get through this.  And when I look forward, all I can see is there ar...

  TSK I have wanted this blog to be not only informative, but also interesting to read, and even amusing. As anyone who knows me will attest, I love to make people laugh, I love to tell stories and jokes and make people smile. When Tom reads the blog posts, I love hearing him laugh at the various things I have written. But in doing that, I fear I may have glossed over some of my other plans for this blog. I do want this to be a real view of my trip through Chemoworld, and to give readers insights as to what it is truly like. I want this to be an honest view of this experience, and in looking back over some of the posts, I may have sugarcoated some of it. That is actually okay - I think most people understand that chemo is not a laugh riot, so they don't really expect it to be a walk in the park. But I do want to talk about some of the real issues that come up as a person getting very intense chemo and dealing with what is ultimately a very scary diagnosis. So TSK is today's acr...

  Skating on the Surface of Consciousness I have had very few really vivid dreams in my life. Usually, when I wake up from a dream, the details almost immediately begin to fade. Some mornings I will say to Tom,"I had this really weird dream last night" and when he asks about it, it's gone.  There are a few things I have dreamed about that remain vivid. Years ago, I dreamed that we were moving a house to Berkeley from Oklahoma. It was a big old three story house, and we were moving it by helicopter. I remember riding in the sleeping porch, and could still identify the exact shade of pale green that that board and batten walls and the window sashes were painted. There are other houses in my dreams that have showed up multiple times - even though the dreams themselves are not that clear, the houses have been consistent. It's kind of an odd experience in a dream to be in a house and to know, "Let's go down this way and there's another entrance that leads to t...

A Question About the Blog I tend to be sensitive to language, and the sublet messages that it conveys when people write or say things.  A lot of this sensitivity comes from spending my career in the disability community. Language can be incredibly oppressive to people with disabilities. So many people use phrases such as "she is confined to a wheelchair". On the surface, it sounds like it makes sense - a person needs a wheelchair to get around. But, in fact, the message behind that is that wheelchairs are somehow confining, restrictive and, ultimately, a bad thing. The people who I know who are wheelchair users are not "confined" by their wheelchairs - they are confined when they can't get their wheelchairs serviced and repaired.  This carries over into attitudes that people hold about people with disabilities. Many people view disability as somehow "inspirational" - the fact that a person with a disability goes out andlives their life is something ins...

 Six Flags Over IKEA This trip I am taking through Chemoworld has been fascinating and horrifying and painful and exhausting. It's not a trip I recommend to anyone, but if, like me, you have to take the trip, there are interesting twists and turns. In some ways, it reminds me of running back into the building after recess in elementary school. For a while, you're in this great big space, but then everyone has to go through the same door. So you go from feeling like you have personal space to feeling like everyone is on top of you. So there are times during this journey when I have had to get pushed through the correct door, be in the queue that I had no interest in standing in, and try to just get through. It's like being in a theme park, where some of the rides are mandatory. Anyone who knows me knows that I hate theme parks and roller coasters and rides. But here ojn this trip, there are times when I have to take them - it is the only way through. It reminds me a bit of I...

 Chemo Number Two  (A Blog Post with More Medical Info and Fewer Laughs) On Monday, March 1st, I had my second chemo infusion. It's been an up and down day (as may be evidenced by the fact that I am writing this at 1 AM Tuesday.) Although going to Kaiser for the infusion feels like walking the green mile or something, I actually was quite calm by the time we arrived.When they took my blood pressure (which had been high before the first infusion), it was 120/70.  They brought us into the back, and I was soon hooked up to an IV and started on the first bag of chemicals. Tom likes to sit and read every bit of instructions and ask the nurses interminable questions (which is, truth be told, why I bring him) but I made myself comfortable on the reclining chair with two pillows and a heating bad for my back, and pretty early on I fell asleep. It's not exactly a restful sleep - the infusers make some godawful noises, including an alert when they are done that makes you want to ju...

 The Coriolis Effect My friend George Beier is a really wonderful guy. Smart, quick witted and funny, he is also financially successful, and cute as a bug's ear.  George has written to me to tell me, that although he loves my blog, I am mostly wrong about things. According to George, "You Light Up My Life" is one of the greatest songs ever written. I have no problem there - once again, he's just showing how bad taste knows no boundaries. But George also says that self-help books are wonderful, and he devours them. In his last note to me, he was encouraging me to write one. I know that I'm a little early in my exploration of Chemoworld to publish my own Baedeker on the place, but I have already been making notes on what I am learning from this experience. Maybe this is installment one.  My first chapter will be about "What Not To Say To People In Chemoworld." Unfortunately, I have already gathered a lot of examples. Here are several of my favorite wrong c...