Thursday, October 1, 2015

Up, up and away

In my dream, Dr. Alyea said that although I felt fine, I was not making enough blood and would need another transplant. He said I would need chemotherapy and a hospitalization all over again. I just could not believe it.

This time I would need to go to California. I said that it would be too far for most people to come visit, although I knew that at least my California cousins would. He said not to worry because they have a gym out there, and he showed me a video of bald people playing basketball.

So although I was filled with dread, I felt better knowing that I could exercise.

In reality, I was sleeping on the third floor of Diane and David's house in Newton, in preparation for my flight from Logan Airport to Minneapolis today. I'm going to stay for four nights at what looks like another great Airbnb that we picked by looking at the map and checking out places near Katie's house.

I'm excited to see her new house, ride bikes (it's flat!), walk around a lake or two, eat out and do other fun things. I also brought some work to do and the book, The Lowland, that we are reading for bookclub.

Yesterday in the pouring rain was a wash. It was one of the only times all summer that we were rained out of our Wednesday clinic, meaning that it will be the first time all summer that I will have a week without tennis! I still hadn't finished cleaning up after having tennis friends over for brunch on Sunday; the cleanup took a while as I suffered the consequences of taking all my piles of paper and other stuff and throwing them into a closet and then having to deal with it when it all spilled out.

Also I did an interview for a story I am writing. And being the world's slowest packer, by the time I got out of the house it was getting dark. For a minute I thought of staying at home and going straight to the airport for my 11:45 a.m. flight today, but then I would have been lollygagging under pressure and that would have been worse.

Diane was so nice to drive me to the airport in my car that I told her she could use any of my stuff: dog leash, tennis balls, tennis racquet, yoga mat, books, natural energy drink, coffee nips and any of the other inventory.

Tuesday, September 29, 2015

One award, two opthamologists

My computer has been in the shop, aka the Apple Store, to fix a popping sound that occurred every time I opened and closed it. It needed a hinge replacement, like a hip replacement for computers.

So that is why I haven't posted.

These are some of thing things that happened.

I got an email saying that my blog made Healthline's list of the top leukemia blogs of 2015. According to the email, "Healthline’s editors carefully selected each winner based on quality, frequency of updates and contribution to the community."

Here is the blurb: Ronni Gordon, an avid runner and tennis player, felt winded while running a 10K race. For many, that would be par for the course. For her, it was the first clue that something was wrong. In 2003, she was diagnosed with acute myeloid leukemia (AML). Now, she’s been living cancer-free for more than six years, but cancer isn’t far from her mind. Ronni is a writer and Running for My Life: Fighting Cancer One Step at a Time is her journal.

In other news, I saw two opthamologists in one week, one a cornea specialist and the other a glaucoma specialist. There is no such thing any more as a plain eye doctor. Dr. Dana, the cornea specialist at Mass General, has been following me for possible Graft vs. Host of the eye. He thought I previously had it, but now, he said, with continuing use of Restasis, my eyes look good. I do have dry spots in my right eye due to surgery right near the tear duct to remove a squamous cell cancer. I need to keep putting Genteal gel in it.

Meanwhile, my optometrist wanted me to see a glaucoma specialist due to a test he gave me that was either suggestive of possible glaucoma or just something that shows up with very near-sighted people like myself. Also my mother had glaucoma. But thankfully I don't.

When the nurse was checking me in, she said she was going to ask me some questions that might not seem applicable to my eyes, such as, "Have you ever had any blood transfusions"?

I said, "Yes, a million of them. I had leukemia."

When she went to write it down, she repeated it incorrectly to me, saying, "You have leukemia."

This is one of those instances where one little misspoken word can set off an alarm, such as when I was in the hospital sick after graft failure, and a physician's assistant, in telling me about the next step in my treatment, said, "Assuming you get better..." and I dropped my spoon and my sister said, "She doesn't like that word," because it made me think she wasn't sure about it.

Anyway, the nurse at the eye doctor's said to me, "So you're in remission," and wrote that down, and I wanted to say, no, it's better than that, I'm cured, and would you say to a woman who had breast cancer, I'm going to write down you have breast cancer, but of course it makes no sense to get into it. And I don't like to use the word cured anyway because I think it's a jinx. Maybe someday I'll get over that.

Tuesday, September 22, 2015

Pain in the arms

Yesterday was not my best day at the Kraft Blood Donor Center, where as you know if you have read about this before I was donating my sunburned, new and improved blood back to myself.

First of all, I came in unrelaxed and 15 minutes late because I had driven myself and despite drinking a shot of the natural energy drink Yerba Mate I got so sleepy that I got off the Pike at the Route 9 Framingham exit looking for a Starbucks. It was less than a mile down the road but just getting off the highway woke me up so I didn't stop after all.

My nurse, Kim, said she could do the usual six cycles anyway because my blood usually flows well. But it didn't turn out that way. First, she had to wiggle the needle around in my left arm because it was not drawing well. It started OK but then got sluggish. She said she was sorry but she would have to change arms. I closed me eyes and tried to go to my calm place.

When I went twice a week, I alternated left and right, but now with once a week they said it was OK to do the same side, and as a righty I have been choosing left. But I guess my the veins in my left arm got tired. Also when my hematocrit came back a little higher than last week (but not as high as the week before), they said it was a sign that I had gotten dehydrated again, thereby causing my veins to be less puffy. (It probably came from getting drenched in sweat after spinning at the Y the day before. I thought I was keeping up, but I guess it was not enough.)

So she went to the right, where she found a vein that worked, but it was pretty thin and the needle hurt most of the remaining two hours. When that nice Dr. Savage came around to check on me, I had tears in my eyes and said, "I am not my usual cheerful self."

He and the nurses Kim and Tina were super nice and distracted me and cheered me up. Tina thinks it's funny that I had turned her on to the Netflix series Grace and Frankie and that she had finished it and I had never gotten around to it. That's probably because I only do it at ECP and last time the internet was not working. So I brought it back up and there was Lily Tomlin's face just staring at me and I had to laugh. Dr. Savage said he was looking for a series, and after he caught a glimpse of it on my screen, he chuckled and said that would be his next.

I thanked him for cheering me up and then I focused on finished the series, which, unexpectedly, ended on a bit of a cliffhanger. Tina said she wondered if it had been renewed, and I looked it up and saw that it was. By this time I was done, but, even though we had cut it down to five cycles rather than the usual six, I wasn't finished until after seven.

I went to Margaret and Nick's, where I got a hug, a good dinner, a beer and some good cheer. I slept over because today I have a new adventure, an early morning visit to the Massachusetts Eye and Ear Infirmary to visit the cornea specialist who monitors me for possible Graft vs. Host of the eye. The last time I went there, I had an afternoon appointment and waited more than two hours. Hence the choice of the early a.m.

Then, thanks to cousin Betsy Brody who sent me the recipe for my grandmother's honey cake, I am going to caffeinate, go home, get the ingredients, bake the cake, hopefully get a little exercise, and head to Carolyn and Chip's for the Erev Yom Kippur meal with that branch of my lovely extended family.

And, did I say, also take a deep breath?

Sunday, September 20, 2015

Somewhere, an almost forgotten birthday

Somehow, I have lost track of a birthday.

I wrote all but one of my birthdays down in the little blue spiral notebook that Diane gave me when I first got sick a dozen years ago. I had a feeling it was Sept. 18, but when I went back to check in the "new and improved" Patient Gateway site where I used to be able to see all of my appointments for the past 12 years, that information seems to have vanished. I wrote Melissa, but it was late on Friday when it occurred to me; I'm sure she'll write back eventually, and then I'll write it down for future reference.

In any case, the date of my first transplant is somewhere around here.

I wrote in the book: last day of work, Friday April 4 (2003), and hospital admission, 4/9/03. It shows you how fast I got swept out of the life that I knew. On a Friday, Ray and Mimi were helping me squirrel through the pile of papers on my desk to find the sheet containing my low blood counts so I that I could give them to the receptionist at Dana-Farber. That Monday, my tennis friends Korby and Kit drove me to the Dana-Farber clinic, where I had taken my bags because I knew I wasn't going home. Two days after that, I was hospitalized for my induction round of chemotherapy. Six months later, I got the first of my four transplants.

I quietly celebrated "new birthdays" one, two and three, but never made it to the magical five.

I wrote this down in the book: relapse, August, 2007 (after Korby and I had played and won in the Districts, how strange is that); admission, Aug. 10, 2007; transplant #2, Oct. 18, 2007; graft failure, April 21, 2008; transplant #3, June 10, 2008; sick and relapse, Dec. 21, 2008; transplant #4, Jan. 31, 2009.

That is definitely a lot of birthdays.

Of course the only one that matters is the last one, and as I think and say all the time, thank you Dana-Farber and Denise for giving me this beautiful fall day and the rich, full life that I have.

Saturday, September 19, 2015

Numbers go in the right direction, skin softens up

A few days ago, Melissa emailed me saying she had asked Diane at ECP to check on the kidney function that was elevated last week.

That was a little disquieting since I thought I was done with all that, but then I realized it was most likely due to dehydration. Taken to the extreme, dehydration can even cause kidney failure. I wrote her and asked if that was the reason; she said yes and apologized for not having mentioned that effect of dehydration.

In any case, I worked hard during the week to ameliorate the problem. Also it wasn't as humid so I probably did not lose that much in sweat. Just as George congratulates us on having a "mature shot" in tennis, I gave myself a little recognition for having a mature reaction to the email about my kidney function, in other words, I didn't jump to the conclusion that something dire was wrong.

I never got those results, although I did find out that my hematocrit was back down to around where it should be – 31 – compared to the high of 35, which, although usually normal, suggested dehydration in me because I have been lower due to the ECP.

In a follow-up email, Melissa told me the good news that my ferritin is down to 877. That is very big news because I have been working hard on that by making myself take Exjade most mornings to reduce the level, which I think was as high as 6,000 after all those blood transfusions. (Normal is 12-300 nanograms per milliliter.) I wish I could share that with Patricia.

I drove myself in on Thursday because I had a dermatology appointment at 1 p.m. at another location before my 3 p.m. ECP at Dana-Farber, and although on paper it might have worked out to take the rides, I could see a disaster waiting to happen if I went that route. Dr. Alyea had predicted that my skin would have sprouted nasty things due to my sun exposure over the summer, but in fact Dr. Lin only saw a few things to which she gave a light zap.

She said she could see that the ECP is helping my skin; pressing on my abdomen, she explained to a resident that I had previously had a hardening of the area – scleroderma – and now it is getting softer.

She did, however, tell me to apply chemotherapy cream to a flaky spot on my upper lip. I had a Mohs procedure to remove a squamous cell cancer there, and while it should be gone, the flakiness suggests that perhaps some is left. Hopefully the cream will take care of it so I don't have to get that surgery again.

Then it was on to ECP, where the needle went in fine, as compared to last week, when dehydration had caused my vein to flatten out, thereby requiring two unpleasant sticks.

My nurse on Thursday, Esther, is a pillow fluffer par excellence. She is the best one at getting me as comfortable as can be for the three hours that I am immobilized with my arm outstretched.

When I have the time, as I did on Thursday, I like to go onto the other side and thank the platelet donors and tell them the story of how an anonymous donor saved my life when I was at death's door.

Everyone seemed pleased, except for the nurse who, upon seeing my Metrocard bag, asked if I was a Yankee fan and was disappointed when said no.

Saturday, September 12, 2015

Birthday party fun and paranoia in the night

Birthday boy, top, and Maddie
Wrote this in the middle of the night.
Ran off and forgot to publish!

So far, a strange night.

Well, not exactly night. Early morning, 3:32 a.m.

Maddie had a great evening at Grimsby's birthday party. She ran around like crazy at Ken and Andrea's, allowed a birthday hat to be put on her, and did not complain when Grimsby snatched it off and ran away with it. She had some cake (a decorated bone made at Dave's Soda and Pet Food City), sat with friends by a bonfire, and had some other treats not usually on the menu.

She drank a lot of water and went to sleep OK but woke me up breathing at twice her normal rate. I brought some water up for her. She lapped it up. I looked up the number of the Veterinary Emergency Hospital Hospital in Deerfield on my iPhone and dropped it on the bridge of my nose. It made a decent cut.

I dialed the number and got Jackie, who asked if Maddie's gums were pink. They were. She said maybe the dog is just hot in my room. I said I had the ceiling fan on and it seemed OK. I wondered if there could be anything seriously wrong with her heart due to her breathing at twice her pace. I thought of a friend who called me years ago saying she had gone running with her dog in the heat and the dog got overheated and died.

Jackie said it was my decision. I decided not to go. Couldn't go back to sleep. Decided to go. It would cost more than $100 just to walk in the door. Put my clothes on and brought the dog downstairs. Tried to lie down on the floor next to her. She got up and walked away.

 If she could talk, she would probably say, "Stop smothering me. Leave me alone, I'm just tired."

Maybe she was in a huff because Grimbsy grabbed the cake and ran away and his Mom and Dad had to break off a piece and give it to her.

She got up on the couch and settled down. Decided not to go. Sat down to write. 3:55 a.m.

Summer tennis team round robin at 10 followed by trip to Black Birch Orchard for wine and food.

Maddie resting peacefully on the couch.

Better get some sleep myself.

Thursday, September 10, 2015

Drink up. (Not coffee or alcohol)

Looking down at the lobby
Today I went to Dana-Farber early to have a checkup with Melissa before my ECP and got one of the nice drivers, Kenny, from Prevalent, the same company that also sent me Igor the psycho Russian driver.

Kenny is a father of two whose main interest is in music production. We have chatted about this in the past. He is the one who keyed me onto the story about Igor/Alex.

This morning he told me that the company had a scheduling problem, namely that he had to pick some people up in Boston at 2 and bring them back to Springfield, and since they obviously would not want to wait to go back until I was finished at 6:45, he was talking to his supervisor to try to figure out what to do.

Igor was the only driver available in Boston. I said no way was I getting in a car with him again. They would either need to farm me out to another company or figure something else out. Kenny said he would drive the first passengers back to Springfield and then return for me.

When I was reviewing my counts with Melissa, I was surprised to see that my hematocrit had taken a big jump to a normal 35, compared to the slightly lower than normal 28.9 from last week's ECP, which is actually normal for patients getting that procedure since you lose some blood.

I thought that was impressive.

But actually, it was the opposite.

It turns out I had polycycthemia, an abnormally high red blood cell count due to increased concentration of blood. This can happen as a result of plasma volume loss after dehydration, excessive sweating, vomiting and diarrhea.

"Are you dehydrated?" she asked.

Come to think of it, I said, I guess I am.

When you play outside tennis as much as I (and the other crazies) do, you probably don't know how much fluid you lose through sweat. I bring water and Gatorade, and we usually have fruit, but I (we) should be finishing it even my thirst is quenched. Often, that doesn't happen.

I noticed in the past couple of days that I wasn't going to the bathroom that much and thought, hmmmm, I must be getting dehydrated, I should fix that. But I have written about this so I should know: It's hard to play catch-up.

Everyone at photopheresis says you need to be well-hydrated for the big needle to go in smoothly and the blood to run freely; I said I would go drink more at lunch, which I did, but you need to start doing this days before, not day of.

So when my nurse at ECP put the needle in, I felt it catch on something. I closed my eyes and felt her moving it around to try to get the blood to flow. She had to take it out. Dehydration had caused my vein to flatten.

A different nurse came over and applied a hot compress and gave me a a talking to about staying hydrated. She used a different vein and got the needle in. The rest was uneventful. I started to read The New York Times on my computer but quickly got sleepy and took a nap. You might think it would be difficult to fall asleep under the bright lights with so much activity going on, but it is easy. They say the procedure puts a lot of people to sleep. It definitely makes the three hours go more quickly.

My mouth is very dry.

First thing tomorrow I am going to start drinking. Water, that is.