Tuesday, February 26, 2013

Good news at dermatology visit

When I saw my dermatologist yesterday she said that the two spots she biopsied are not squamous cell cancers but rather early dysplasia that can be treated with a cream. That was good news.

Unfortunately, I had gotten to my appointment late – at 10 a.m. – instead of first thing in the morning as I had been scheduled. Somehow I got it in my head that the appointment was at 10, and I ran with it. I'll have to double-check the time of my next appointment. They said she could fit me in, so I waited...and waited and waited, until after noon, falling asleep with my head against the wall.

She froze a lot of the spots on my hand and lasered some of the larger brown chemotherapy blobs on my neck. It felt like tiny sharp needles pricking my skin. One of the biggest blemishes is a star-shaped brown spot  from where my feeding tube was. In a way it's a badge of honor, but I won't be sorry to see it go. Right now the spots are a darker more pronounced brown, but they are supposed to dry up and disappear. My face was hot and burning last night, but it feels better now.

We talked while she worked. It was a little difficult to carry on my part of the conversation, but much easier than trying to answer a question posed by the dentist while he is working on your mouth.

On the way home from Boston I had to pull over twice to sleep in the car. My second stop was pretty close to home, but I wasn't sure I could make it.

Maybe I was tired from having my face, neck and hands zapped and zinged. Or maybe it was from staying up until midnight to watch the Academy Awards, even though I slept through most of the middle section. It's probably a combination of the two.

Saturday, February 23, 2013

Prednisone: The good and the bad

This is what my dentist said to me Thursday while looking at my x-rays after I had my teeth cleaned: "The prednisone is doing a number on your teeth."

I thought he was going to say I had 12 cavities or something like that. It turns out I had two, after having one about six months ago. I use a special flouride toothpaste, but I guess my immune system just isn't up to the job. Maybe it's all those Swedish fish. Seriously, though, I don't eat that much candy, although I do admit to having a sweet tooth. In any case, after hearing the dentist's solemn tone, I was relieved to just have two.

I told the dentist that the the prednisone has also done a number on my hands, wrists and face, where little thingies keep popping up."Maybe my liver will be fine and the rest of me will crumble," I said. Ha ha.

Speaking of my skin, I have an appointment in Boston Monday morning with Dr. Lin for her to freeze some spots off my hands and wrists.

Katie was getting her teeth cleaned at the same time I was on Thursday. Afterward we went to the Holyoke Mall, which neither of us likes very much. We got there at the perfect time, right before it opened at 10 a.m., when we joined a group of shoppers waiting between two doors. We were personally invited in. We had agreed to go in two directions – Katie towards the store where she hoped to find a small lamp, and me going the other way in search of tennis balls for that afternoon's game. We figured we'd meet up in 45 minutes, but since hardly anyone was there, we finished in about 10. Best time to shop.

Meanwhile, back at the ranch, I had coffee the other day with a friend who told me she had already registered for the St. Patrick's Road Race. She wanted to know if I was running, and, regrettfully, I said no.

This time last year I was in full training mode, running six or seven miles at a time. Talking about it reminded me how much I want to get back. Yesterday I gave it another try. I set out to run a little over a mile, to the lower paved lake, around it, and back. Doesn't seem so hard. But I had trouble keeping my balance near the end, so I switched to walking a little and running a little.

I think this is how I'll have to do it, starting from the beginning and doing walk/runs until I am more comfortable with it.

Wednesday, February 20, 2013

Spring training

I love having a philosopher tennis coach.

Tonight, George said, "In tennis as in life, do not put yourself in danger."

He was referring to the right place to hit a ball. Get it in front of you or in the air rather than letting it bounce too close to your feet when it will put you in danger.

When we changed sides on the court during a hitting drill, I jogged over to the other side. George told me I was looking very bouncy. "I know, I'm in spring training," I said. (Even though it's still winter.)

I am feeling better, and my big news is that I haven't thrown up in quite a while. I have an appointment next month with a GI doctor, and I am definitely going to keep it, but I wonder if the digestive problem has corrected itself...or whether it's waiting to pounce. Just to be sure, I take a Compazine before I play tennis. I had coffee last week with a friend who I haven't seen for a while, and he told me all sorts of interesting things. And this was what I had to say: "I seem to have stopped throwing up." Hmmmmm.

I wrote before that I was asked to play in the 10:30 Friday easier group instead of the harder 9 a.m. group where I have not been playing well. I play with one of the 10:30 women in a summer group, and she's fun to play with. The other two women could hardly play at all, and one couldn't even keep score. It was tennis purgatory, and I told Michael I wasn't going to do it again. Instead, I am going to spend the next few weeks getting in better shape, and then I will try the 9 a.m. again. Towards that goal, I did a half an hour of cardio-tennis with Michael over the weekend. I asked him to run me around but not to kill me. He seemed to think that was a good idea.

If you are not a tennis nut like some of us are, you might think I take this too seriously. The reason I do take it seriously is because I see it as a barometer of my well-being.

I went to yoga on Saturday for the first time in a while. I was soooo stiff, and I still need to keep one hand on the wall in balance poses. I was getting kind of frustrated with myself, not like a good, accepting yogi. At the end of the class I talked for a minute to the teacher, Justine, about trying to get in a better frame of mind. She said to try seeing it as sending energy to the parts of my body that need it. Interestingly, I must have been doing that, because I walked out feeling very calm.

Yesterday's spring training consisted of galavanting and shopping with Katie in Northampton. We had lunch at the Haymarket, where I had one of my favorite dishes anywhere, their artichoke stew. The place definitely has a great atmosphere. It was damp and rainy outside but cozy downstairs in the restaurant with a candle on each table. When we went shopping for a dress for Katie, I turned into my mother, who always said, "Take two." It is fun buying your daughter things. I got myself some Swedish fish and a pair of yoga pants. I was "good" when we came home. I drove to the gym, where I rode a bike, did some leg presses and lifted a few weights. Maybe that's why I was bouncy today.

Tuesday, February 19, 2013

When other people get leukemia

I read with interest the story in today's New York Times about how Dr. Susan Love's own illness has given new focus to her cause of fighting for the needs of people with cancer.

Love, 65, the surgeon, advocate and author of "Dr. Susan Love's Breast Book"was shocked to discover at a recent routine checkup that she had acute myelogenous leukemia. She had given a talk last spring chiding the research establishment for ignoring the needs of people with cancer, only to discover not too long after the talk that was a patient herself. She said she might have been less shocked if she had breast cancer because it is so common, "but getting leukemia was a world I didn't know."

Luckily, her younger sister was a match for a bone marrow transplant. She received the transplant after chemotherapy, and is now in remission. But she was in the hospital for seven weeks due to complications after the transplant.

Welcome to my world.

Whenever I hear about someone with leukemia, the word lights up for me like a blinking red light. I have to stop and read about it some more. People with other cancers have told me the same thing happens with their cancer. When someone with leukemia is doing well, I feel good about it. When I read about a death, I feel bad not only for the person who died, but I also feel a sense of dread for myself. I know people die of it, but when I see it, I am reminded of the seriousness, and I think, I could die. Now that I am so far out and doing so well (aside from all my stupid complications), it is less chilling, but it still affects me.

Here's another example. I was browsing through the last print edition of Newsweek (Dec. 31, 2012, so sad) and was reading editor Tina Brown's column about the last issue. She mentioned the loss of executive chairman Sidney Harmon, who died of complications of ... leukemia. I looked up his obituary, which said he had an active life and a short illness before his death at 92.

So...that I can take. But not the death of a young person. I am reminded of Iditarod champion Susan Butcher, who died in 2006 at 51 when she relapsed after a stem cell transplant for leukemia. I was in the hospital for some complication or other. My social worker, Mary Lou Hackett, said she had to tell everyone on the floor to turn off the TV.

Friday, February 15, 2013

What I did for fun yesterday

I popped over to Boston, which, even though it's 90 miles away, is now almost like going someplace in my neighborhood.

The easy, actually very nice, part of the day was meeting with my social worker, Mary Lou Hackett. We check in every now and then, and it's always so calming to see her. Running a little late because of traffic, I speed-walked from Dana-Farber, where I had parked my car, along the inside bridge to Brigham and Women's, where we had agreed to meet at 10:15 a.m. Being on that bridge, with its paintings of birds along the wall in one section, brought me back to the days when I was hospitalized and Diane and I (and our mother during the first round) walked across the bridge in the opposite direction, me shuffling and, one time, Diane pushing the wheelchair that carried nothing but handbags because I refused to get into it.

We talked for a long time, and I was glad I got to share something that she would pass along to a new patient. When I was going through treatment, Mary Lou always reassuringly told me about someone else who had been in my place and was now past that. Yesterday, she told me about a patient, eight months out, who had lost a lot of weight, was unable to eat much and was tired of people pushing food on her when everything had a metallic taste.

I told her I remembered being in that position, unable to keep much down, when a doctor told me, "You will eat again." I half believed I would be like that forever and was reassured when the doctor told me otherwise. I told Mary Lou to tell her patient that I had been in the same situation and was now eating well. Mary Lou said she would pass it on and her patient would be glad to hear it.

I was late for my next appointment, a "therapeutic phlebotomy" to remove about a pint of blood in order to lower my ferritin level. I speed-walked half-way to the Kraft Donor Center, where I lay on a bed alongside good souls who were donating blood and platelets. I felt a little out of place, but there was nothing to do about it. Before, a nurse had checked my hemoglobin level to see if it was high enough to do the procedure, and at first prick it was about 11.5, too low to proceed. I got upset because this was my main reason for going to Boston, but then she tried the other hand and it was over 12, so I got the go-ahead. They told me I might be a little anemic but in 48 hours my blood would replenish itself.

Feeling a little wobbly, I returned to Dana-Farber to get an EKG to make sure I can take the new anti-throw up  pill, Regian. It came out fine but that was just yesterday so I don't have the prescription yet. (Another pill! Woo hoo!) In the meantime I haven't gotten sick again, but just to be sure, I take a Compazine or two before tennis.

I ate some lunch and got back in the car, which probably wasn't a good idea. As soon as I got on Route 9, I started falling asleep. I couldn't find a place to stop, so I kept popping little chocolates into my mouth, figuring you can't fall asleep while eating. It was tough, but finally I made it about 10 minutes to Waban, where I usually get a Starbucks. I was lucky to pull into a sunny parking place, where I konked out in the car and slept for a good 30 minutes. Refreshed, I got my coffee and headed home.

Diane pointed out that it was the fourth anniversary of my coma, which, of course, had already crossed my mind. Joe and I call it my "coma-versary." I don't mind thinking about it, because it reminds me of how far I have come.

Friday, February 8, 2013

Radioactive breakfast, served with salt and pepper

Did you ever start your day by eating a radioactive egg and then lying motionless on your back for 90 minutes while a scanner tracked the progress of the egg through your digestive system?

I doubt it, although that's what I did yesterday, and I can tell you it's not fun. First I ate a chopped egg that had a few radioactive drops in it. The technicians were nice enough to bring me salt and pepper, and I couldn't taste anything but the egg. The two of them stood by and watched me eat it as fast as I could, which, if you know that I am one of the world's slowest eaters,  is not very fast. I apologized and told them that my children are always telling me, "Swallow already!"

The egg finished, I got on a table and the machine came down close to me. About half-way through, my arms fell asleep and I wanted to jump out of there. You can watch a bar showing time elapsed and time to go, kind of like the picture you see on a video screen of your airplane approaching land.

The test is called a gastric emptying study. I was glad to find out that the results showed my body is not processing food correctly, and THAT is the reason that I keep throwing up. I never was so glad to hear that I have yet another something. I am going to have an appointment with yet another doctor – a GI specialist – and in the meantime I am supposed to drink lots of water, eat low-fat and low-fiber foods and frequent small meals. So much for the ton of fruit I just bought to help me get through the storm.

Melissa said this is not bad. There is a drug that will help, but first I have to get an EKG, so I will schedule that locally. In the meantime, I can take the anti-nausea drug Compazine before I play tennis so that hopefully there will be no more throwing up on Michael's tennis court. I am still so embarrassed about that.

After the morning appointment, I checked in with Melissa. Kind of taking after the Super Bowl, Dana-Farber's computers were down, so we didn't do much other than a quick exam and look at my pictures from Spain. My weight is down again, maybe from the digestive issue.

Next I went to see my dermatologist, Dr. Lin, who biopsied two spots on my face that will probably be squamous cell cancers that need to be removed. Then she gave me the PDT treatment, which involves sitting under a hot light for 16 minutes and 40 seconds. Now my face is bright red and burning.

In the morning as I set out for my appointments, I said to David, "I don't usually complain, but this kind of sucks." He said he's surprised at how little I complain, and that I certainly have a right to. It's hard to feel justified when I am alive and so well and when I look at the really sick people at Dana-Farber, but still it helps to kvetch from time to time.

Then I thought about the reason for all these tests – that my doctors are looking after me – and I felt very well cared for. I am sure there are patients whose doctors don't address everything so quickly. I am always so grateful that I went to Dana-Farber.

Tuesday, February 5, 2013

Testing, testing

I like to group my appointments in Boston in clusters so that I can minimize driving back and forth, but when it comes down to it, it can amount to a tiring day or two.

I have one appointment on Wednesday and four on Thursday, like so:

On Wednesday I go to Mass. Eye and Ear to see the specialist who has been watching out for Graft vs. Host of the eye. When I started seeing him, my eyes felt scratchy, but with twice daily drops of Restatis, they feel fine now, so I think I'm OK. Sometime that day I hope to see Katie and check out her new digs, which I haven't seen yet.

Thursday is the busy day. I start out in nuclear medicine with a  two-hour "gastric emptying and motility scan" to try to find out why I am still throwing up. I'm not sure what they do, but I have the impression I might come out glowing.

I thought I was done with throwing up, but unfortunately it has come back at the most inappropriate times. Yesterday I went to a tennis clinic, ran into the bathroom to throw up, and then returned and finished the clinic. Melissa said the endoscopy ruled out anything serious, and this could be something that can be fixed with a pill. Also, she said that after transplant this sometimes happens to people like me who immune systems have been manipulated.

I will have to tell Dr. Alyea, a fellow tennis player, that this is harming my tennis game. I play tentatively because I am afraid I might jar my insides. I have even been demoted from the more competitive Friday 9 a.m. tennis round robin to the easier 10:30 one. In the overall scheme of things, this is no big deal, but as a competitive person, it bothers me. My father would understand. I have a match coming up on Sunday and hope to find a solution before that.

Next up on Thursday is my check-up with Melissa, followed by "therapeutic phlebotomy" in the blood donor center. The plan is to take out some blood to lower the amount of ferritin – stored iron – in my liver, a substitute for taking the nauseating Exjade, which adds to my throw-up problems. The blood will be donated to the trash.

After that I go to another location to see my dermatologist, who has scheduled another PDT, or photo-dynamic therapy, to burn the top layer of skin off my face in order to get rid of the little pre-cancerous spots that keep popping up. This is a fun procedure where they put a chemical on your face, wrap you up like a mummy and have you sit there for an hour before putting you under a burning light.

On Saturday I will go to Meghan's wedding shower looking like a lobster. If anyone asks, I can tell them I took a quick trip to Puerto Rico.