Weekend update

Diane and David had a beautiful seder Saturday, with Diane using plates and silver of our mothers to set the table.

On Saturday before I left South Hadley, Diane told me that she had said to David, "Our mothers are smiling down at us."

I had gone for a run and was still lollygagging in my running clothes. "And I can hear Mom saying, 'Ronni, get a move on'," I said. Which she often said at holidays when there was a lot to do but I had gone running first and needed a reminder to get my act together. That said, I did get a move on and got to Newton on time. My three children came, as did Meghan – her first seder. I love seeing them all together.

Katie has the week off, and we slept over Saturday and Sunday night because I had two appoingments at Dana-Farber Monday.

Everything went well. Here are the numbers:

White count, 6 (normal=3.8-9.2)
Hematocrit, 34.5 (normal=34.8-43.6)
Platelet, 88 (normal=155-410)

The platelets are fine for me, but I bruise very easily, sometimes in unexpected circumstances, reminding me that they are low. I have been going to yoga in a carpeted studio, but last week I went to a place with a hard floor. We were up and down, often on our stomachs. That night I looked down and saw a huge black and blue mark under my hip bones. At first I was surprised, but I realized it was from yoga. Next time, two mats.

Ferritin (the storage of iron) is still way high, at 5119 (normal is 10-170). I think the last time it was 8,000. This is from receiving so many blood transfusions. Melissa said not to worry because it's going in the right direction. I continue to take Exjade, the nauseating pill that lowers the level. You put five pills in water, dissolve and chug, then wait 30 minutes before eating. When I even look at the bottle, I start to feel sick.

The next thing I wasn't even going to mention because I found it embarrassing, but I talked to some people who had done it themselves and said it's not uncommon. So...I also had to do a 24-hour urine collection to get a closer reading on how my kidneys are doing. They give you a jug and a kind of bowl to put on the toilet, then you pee and pour. The jug has to stay on ice, so I brought a cooler and Diane provided the ice.

I thought it was going to be worse than it was, especially since I was at someone else's house. But I got a system going, and it wasn't too bad. They wanted you to drink lots of water. I complied but overdid it and thought I was going to float away. I don't know the results yet.

I was finished with Melissa around 11:30. My next appointment, with the "tongue doctor" Laura Goguen, wasn't until 2. I went upstairs to Head and Neck Oncology to ask if she could see me a little earlier. The nurse said maybe, but not any earlier than 1. I had gotten up early and was up half the night going to the bathroom after drinking all that water, so I curled up on a couch, using my coat for a pillow, and fell fast asleep.

I got in at 1:15. My mouth checked out fine.

Then I went out for a salad and toodled around (one of my mother's words.) I spent some time in a cafe on Lincoln Street, near Diane's house in Newton Highlands, and drank good coffee and read my book, "The Marriage Plot" by Jeffrey Eugenides.

Katie had some things to do in Boston, so we didn't leave until after 6.

It was a long weekend, but a good one.

Balancing act

Fix one thing, another goes out of whack. That is often my experience.

I went to Boston Wednesday instead of the usual Monday so I could meet with a kidney specialist, Dr. Humphries. When I first saw the note that I was scheduled to see a nephrologist, I was taken aback due to misunderstanding the word. I thought it meant someone who studied dead people. "I think I'm still alive," I thought. Then I remembered that this was someone for kidneys and that a necrologist was for dead people. Geez.

Barry drove me in because I felt kind of shaky. My hematocrit had gone down to 24, meaning I would need a transfusion if the number didn't pick up on its own.

First I saw the kidney doctor, who was very pleasant. My ankles have been swelling, and he said that's because I'm taking in too much salt. My sodium has been quite low, so I was doing what I thought was best for bringing it up: salty snacks, salt on food and salt tablets. Melissa had said I could take two a day, and then I read the bottle and it said up to five a day. So I added a third.

That finally brought my sodium to the lowest end of normal, but apparently it was too much. I don't change my meds without asking, but I thought a salt tablet didn't count. Apparently wrong. Now I'm off salty snacks and the extra tab. I hope my sodium stays up there. My potassium, which had gone too high, finally got down to the high end of normal. I am supposed to take a sandpapery powder in water, Kayexalate, to bring it down.

He said my kidneys looked normal now but they were badly scarred from the kidney failure.

He said he'd be in touch with Melissa and Dr. Alyea and that he'd see me in four months. ("Four months!" I thought. "He expects me to be alive in four months. Cool!" Kind of depressing thought process, but understandable. I hope with time this sort of thinking abates.)

Meanwhile Melissa said my hematocrit came back up by itself to 27. My white count was stable at around 8, but my platelets had fallen from over 100 back to 59. That really worries me. But Melissa said she had talked to Dr. Alyea and he said not to worry. They've bounced back and forth before. Okaaaay then, I will try not to worry if he says not to.

Physical therapy has been going very well. My therapist said on Thursday that I was doing some balancing exercises that I couldn't have done when I came in. I like it when they bring out the toys: balls, hurdles, bouncebacks etc.

I'm supposed to do something at home every day, but going out of the house gives you more motivation. Also for some reason I feel stronger there. Often at home I get stuck when I try to get out of a chair, but at least I do get out, and I manage most days to do my mile and a half or more walk, alas, without a dog for now.

Saved!

After I waited for about an hour in the clinic Monday, Melissa finally came into the exam room where I sat after progressing through the layers of the system. (Sit in waiting room. Get blood drawn. Back to waiting room. Get called into exam room. Wait in exam room.)

She stood at the door, a copy of my blood counts in her hand. "Well," she said, while my heart fluttered for a second. "These are GREAT counts."

My white count was 8.8, hematocrit 31.9, and platelets 61. Saved! (Saved from my imagination, but still, saved is saved.)

I had let the beach ball of my anxiety rise to the surface (Wendy Halpern's suggestion) and then I had tossed it to several of the many people who will put up with me. The "problem" was that my visit Monday was on Dec. 21st, the year anniversary of my relapse, and since I hadn't felt well last year and I didn't feel great this year on this particular date, I tied everything together.

(In other words I was worried that I would learn on Monday that I had relapsed.)

Some responses: "Don't DO that. Think about something else."

or "Ronni, this is negative magical thinking. It's not real. Stop doing that."

"It's just a day like any other day. You'll be fine."

So I was OK and I could move along. Big sigh of relief.

My liver function test was down slightly, but Melissa said to stay on the 40 mg. of prednisone anyway while it hopefully continues to improve. We talked about prednisone: She said it's an amazing drug that fixes many problems, but it creates problems in many areas too. So just as you can credit many improvements to the prednisone, you can blame many problems on it too.

For example, as the dose has risen, my legs have gotten weaker. I have been more tired, and also moodier. I can blame that all on the prednisone. Still, this week I've been able to be busier, and that has helped. For logistical reasons, we squeezed our Hanukkah party in last night, when it was no longer Hanukkah. You can't do that with the major holidays, but you can do it with Hanukkah, or at least we do, planning it around when the college "kids" come home and the working "kids" can get away.

Diane and David and their two children, Lily and Sam, came to our house last night from Newton for dinner, lighting of the candles and a present exchange. Joe is home for his winter break, and Ben managed to come for a few days. I, obviously, was already here with Katie.

They will laugh if they read this, because it is an understatement: I am not too well-organized. In addition, I am especially spaced-out these days. So, I'm lucky that Ben was around all day to push me faster through my errands, and that, after jockey practice, Joe stepped in to help make the dinner and hors d'oeuvres (which featured Kosher pigs-in-blankets).

Everyone, including of course Diane, stepped up in some way. It was a genuine family affair, and everyone seemed to have a good time.

Diane and I had to laugh about the way we set the table in our own heads. When we were growing up, it was always "Us four and ...." meaning our mother, father and us two sisters as the basic unit, adding on however many guests were coming.

Now as Diane parsed it out, it was "Us four and..." meaning her and David, Lily and Sam, plus the others, such as my three kids and me. I pointed it out as she said it aloud. To me, it's a different "Us four," meaning Ben, Joe, Katie and me, and then the others.

The building blocks are the same, just arranged differently. I'm glad that I'm still in the mix.

Stupid virus

Last Monday I wrote that, due to impressive counts, I was “promoted” to every other week clinic visits instead of every week. I had a little separation anxiety, but it didn’t last long, since I was quickly “demoted” to every week.

That’s because once again I tested positive for CMV, a virus that often pops up after transplant when your immune system is weak. The virus can lower your counts, as can Valcyte, the drug given to fight the virus. I had already been through this in October, when I had to take Valcyte for so long that my counts were in the basement.

So I went into Boston yesterday for a 1 p.m. appointment to get my counts and the viral level checked, not really anticipating too much change since it was only a week after my previous visit.

My white count (3.1) and platelets (112) had only dropped a little, but my hematocrit was 23.8 (and hemoglobin 8.5), meaning it was transfusion time. A few days earlier I had huffed and puffed going up the stairs, making me wonder if my red count was dropping. But I’ve been walking without any fatigue, although I did feel exhausted after Thanksgiving dinner.

In any case, due to a backlog of patient visits after the missed day of appointments on Thanksgiving, the blood wouldn’t be ready until about 7 p.m. This meant arranging to stay with Diane in nearby Newton and making sure that, back home, Katie and the dog had a place to stay. Everything quickly fell into place, thanks to my wonderful support network.

The whole afternoon was ahead of me, and although I had a book, I couldn’t see spending any more time in the waiting room. I had envisioned a quick clinic visit followed by a short (masked) trip to the Chestnut Hill Mall to return a shirt. I figured I might as well go to the mall while I waited for my blood. On the way to the mall I got a coffee and a scone (I was pretty tired but not too tired to proceed), and, when I arrived at the mall with some coffee still left, I didn’t want to waste it.

So I put on my mask and took the coffee cup into the mall, pausing now and then to take a quick sip underneath the mask. Still wearing my white patient ID bracelet, I went into JJill to make the exchange and try on something else. I had to wonder how I looked: A masked woman with a hospital ID bracelet, holding a shopping bag and maneuvering a coffee cup.

After a quick stop at Diane’s to charge my cell phone, I went back to the clinic for the transfusion, starting a little before 7. Diane’s husband, David, dropped her off at the clinic around 9, and she drove me back to her house for tea and cookies and a good night’s sleep.

I’ll be back at the clinic next Monday. Woohoo.