Wednesday, April 28, 2010

On the mend

I am on the mend (again), with Melissa pronouncing my counts "great" at Monday's clinic visit. WBC was 8.7, hematocrit 31.4 and platelets, well, they were 85, down a bit but way up from the bad old days of single digits.

My liver and kidney functions were better but not back to where they were, meaning that I have to stay on the 40 mg. of prednisone until further notice. I am back on a two-week visit schedule, but I am going to get my blood checked locally this Monday, and if the liver and kidney have improved, I might go down to 30.

All good stuff.

I got home and had a little cry.

It is so frustrating to feel a lot better and then take a few steps back. I'm still very wobbly, my balance is off, and I'm especially weak in the thighs. I am going to start physical therapy again. Katie was there for the "pity party" and then talked me out. She reminded me where I was last year this time: fresh out of the hospital, barely able to walk. I know it's not a straight upwards line to "normal," but these setbacks still hit hard.

The rest really is all good stuff.

Ben came home from New York, and with Joe and Katie already here, we had a full house. Last night we had a nice family dinner with the kids, me, Katie's boyfriend, and Jim, my ex-husband. Don't ask. It's not the kind of thing we usually do, but it worked out, and everyone seemed pleased.

Ben is on a little vacation. I knew he was coming here Tuesday, but I didn't remember exactly what else he was doing.

On Sunday, Joe (middle son) went to a game at Fenway Park. He got a text picture from Ben (older son): a shot of the field at Fenway. This is Ben's way of showing people where he is. So Joe sees the text, not having known that Ben was at the game, and texts Ben with a photo of his angle of the field. Ben doesn't answer right away, so Joe calls him. They meet up for a few minutes to watch the game together. Neither had known that the other was there.

The next day, I go to Dana-Farber. I'm not supposed to drive yet, so Jim drove me in. I took a photo of Fenway, which is down the street from Dana-Farber, and sent it to Ben. He didn't know I was there either. He was pretty close and was going to meet us, but because of the timing it didn't work out.

Which makes you wonder: Is Fenway Park really the center of the world?

Sorry, Mom. (Mom was a Yankee fan through and through, and I probably should be too.)

Tonight: book group.

I have been re-reading Abraham Verghese's "Cutting for Stone." I already read it and loved it; this time I was supposed to skim, but that's hard to do when you get drawn back by the writing and the story.

Gotta go try to finish.

Friday, April 23, 2010

Home and forgetful

I got home Wednesday night with instructions to refrain from walking the dog and driving the car until I see Melissa Monday. Also I'm supposed to remember to eat and drink.

So far, so good. Yesterday Chip walked the dog around the lake with me, and today Donna did. I feel a little stronger, but still wobbly. Somehow the day passed and I didn't do any of the new exercises I came home with (or any of the old ones).

Wednesday evening I realized I had left all my medicines, about 30 pills a day, at the hospital almost two hours away. Luckily I had some prednisone from a recent refill, but that was that. I called the hospital and, sure enough, I had left them in a storage drawer under a window seat. Called the pharmacy in the a.m., and they gave me enough to last the day, then arranged for Diane to pick them up and meet me half-way in Sturbridge.

Katie drove, and we met Diane in the parking lot at a Dunkin Donuts, where she brought the bag over and I put it in the car. That was our little drug drop. We went in and had coffee and hot chocolate, then turned around and drove back.

Today my "sketchy" behavior continued. The day before I had picked up one of those cooking magazines in racks along the aisle, and got the ingredients for a chicken, feta cheese linguine and spinach dish. I had the magazine open and must have forgotten it in the store. I thought it said "free," and I was going to just take it. I sent Katie back to look for it, and she returned saying all of those magazines cost around $10.

So today I went back with Donna and found the magazine. I picked it up and said, "See, it says free."

"Where does it say that?" she asked.

I looked closer and it said "fine," not "free." Oops. Time to get my eyes examined. I know it's not my brain, because the MRI just recently found there's nothing there. I fished around for a scrap of paper, and Donna dictated while I wrote down the steps. A woman started to hover, but we hurried on through.

Now I better go make it, if I can understand the shorthand I used to write quickly.

Four hours later...

Made the meal. Instead of being smooth, the goat cheese sauce came out icky and sticky. I overcooked the chicken, and although I used a ton of spinach, it withered to nothing. My companion threw hers away. I soldiered through about half of mine, then got rid of it.

1 star

Monday, April 19, 2010

Flat on my back

Saturday, walking the dog around the lake, I made it about 3/4 around and then felt like my feet couldn't go anymore. I was going to sit on a step but instead toppled back and fell on my back, banging my head on the cement and also landing hard on my wrist.

Some of the usual walkers at Mt Holyoke offered help; I asked if they could help help pull me up to seated, which they did. I called Joe, who is home, and he got me and the dog in the car. By the way, the dog behaved perfectly, sitting down beside me.

So once at home Joe said to call the doctor. I resisted. "Then I'll just spend the whole night in the emergency room." "Well, you know you should call." So I did, and the doctor said to go to the emergency room. We might as well have driven to Dana Farber, but I thought our local ER, at Baystate Medical Center, would be quicker, and then they would send me home. I pretty quickly got a bed, and the testing began. A cat-scan of the neck and x-ray of the hand proved normal, for starters.

Basically, because of the continuing dehydration, my potassium was high, my sodium was low and my kidneys were struggling. This all played into my weakness, plus the higher prednisone. Also it probably fed into my murky mental state.

They immediately put me on fluids and my levels started to normalize. I ended up getting a bed and staying up until about 4 a.m. because of one thing or another. They couldn't register me or find my paperwork in the ER. They noticed there was another admit a few floors away: Ronnie Gordon, and they checked to see if my files and stuck to hers. Nope. So they had to start at the beginninng. ARGH! I was tired.

Next morning I had a slightly strained discussion with a doctor about him talking to Dana-Farber. He said he hadn't called, didn't need to, but would put in a call when the testing was complete. He walked out, re-entered just as quickly, and said he had talked to Dana-Farber and I was going there by ambulance. Quick change.

The kids were total mensches. I said I could go alone, but Katie and Joe said I'd be lonely. So Katie rode in the ambulance with me and Joe followed behind with the car. Ben and Jim had been on the phone sharing their conviction that I should not stay at Baystate. Joe organized everything so well that I felt perfectly taken-care of and didn't have to worry about a thing. He also noticed that for the past several years it seems that just after coming home from college, one of the first things he's done is take me to the hospital. Says I must be allergic to him.

The Dana-Farber doctors (I saw a lot of them) said that Baystate did everything they would have done here. Still, they repeated every test.

Once here, I amused myself by trying to get the correct menu. Last night someone erroneously gave me the kidney menu, which was for patients a little worse than I. It had low sodium and low protein, both of which I need. I finally got a doctor who said he's sign off on the regular menu, then he disappeared. My night nurse came and disappeared into a patient's room to do chemo, which is their first priority. Also my saline drip, which is supposed to go constantly, was not connected. So, getting a little angry, I walked about into the hall. The nurse was sitting there. She said she'd take a break from the chemo to get me a menu. By the time that she gave it to me, the dining services was closed. I walked back out and said I really needed food. She and another nurse found a bagged tuna lunch in the fridge. So, naturally, I took it. Then the other nurse came in and hooked me up.

No big deal, I know. Just an example of life in the hospital. At some point in my many stays, I've usually had trouble getting the right food.

In any case, I'll probably be here for a couple of days, when hopefully Joe will be able to pick me up. In the meantime, here I sit at Brigham and Women's, where everyone knows my name.

Friday, April 16, 2010

Return of GVHD

For the past few weeks I have been whining about my weight gain. I had gotten back to my regular weight and was putting on a bit more, thanks to the prednisone.

Then, voila! The stomach bug hit, and I lost about 10 pounds in five days. That was great, but the way it happened wasn't. I called Dana-Farber and they said to come in the next day.

Melissa said it was probably a flare-up of Graft-Versus Host. The first thing was to increase my prednisone from 1.5 mg. to 40 mg. a day. So here we go again with the higher prednisone. My legs have gotten weak again, and I'm sure that's part of it.
I also got a bag of fluids, which was great. I love it over there in the infusion room. A nurse brings you a warm blanket, you adjust the chair and then you snuggle up and sleep.

My counts were all messed up caused by the dehydration and whatever's going on, so I won't even mention them.

Bump in the road, I know. But it still takes a lot out of you.

Wednesday, April 7, 2010

Scary news in the night

About a week ago, I received my donor's name and contact information. Previously I knew only that she was a woman. We could correspond, but our letters were censored.

I stuck the slip of paper on the fridge and kind of circled it for a few days. I liked looking at it and imagining what this person, who was now part of me, would be like. I would write soon. She beat me to it. I don't want to violate her privacy by saying her name. Let's just say she is a woman about my age who lives in New Jersey.

Naturally I feel grateful towards her. I wanted to hear more about this generous woman. What she had to say made me almost fall out of my chair. Actually it sent me straight to the Ativan. Turns out she hadn't known when she donated that she had breast cancer. But she found out shortly afterward that she had it then and she has it now. It hasn't spread to her lymph nodes, and her prognosis is good. She said her doctors said she probably hadn't hurt me. They passed the info to her local transplant center, but I don't think it made it any further.

She's currently undergoing treatment and is doing well.

WHAT? Rational Ronni, who was far away at the moment, might have signed off with a "glass half full" sceniaro. Now the other me...First let me not beat myself up too much, because, hearing this for the first time, most other people would be very distressed. I went right into catastrophe mode: how ironic, how sad that I could get another disease from the transplant and get sick and maybe die from it. The tears began to fall. I wrote Dr. Alyea and Melissa and went to bed.

In the morning, Dr. Alyea's e-mail awaited me. He said he had no concern that my donor's health problems would affect me, and that he wished her well.

Phew. I hope to be in touch with my donor again and think of ways that I might be able to help her now. None of this, of course, was her fault, but she sounded guilty and scared. Actually, that's how I felt too: guilty about looking at it all from my point of view, and scared about how it would impact me. Oy! Stop!

I felt perkier as the day went by. After school, Katie went for a run. Standing outside in the sun, I decided to do the same thing. So I "jogged" down the street and back. A friend driving past me pulled in the driveway, got out and congratulated me. Did I look like I was really running? I asked. Yes! she said. Yay!

Gotta take the dog out and maybe throw in a small jog, maybe not, depending on how I feel. The sun is shining, and life goes on.