Back to Boston for another procedure

It is impossible for me to stay away from Boston for too long.

Tomorrow I am heading back for an endoscopy to try to pinpoint and treat the cause of the stomach problems that I have had for more than two weeks. Melissa suspects it is a flareup of GVHD.

When I talked to a woman at the endoscopy center at Brigham and Women's Hospital today, she said that because it is a brief procedure, I would not be getting anesthesia. I thought but did not say, "You have got to be kidding." I said, "I'm sure that I got it the last time because I don't remember a thing."

She checked and said I was right. So, no eating after midnight.

The good news is that Joe is driving me and I do not have to depend on the whims of an unknown driver.

In other good news, I went closet shopping and found a pair of shoes I can wear to the Great Futures Gala on Thursday. I wore black lace-up Granny boots with a black skirt over the weekend in New York, and my friends said that although they looked cute, I should get some real shoes to go with the same skirt when I wear it to the Ludlow Country Club this week.

My mother's memorial service in 2006 marked the last and only time I wore the shoes. I never felt like wearing them again. Nor did I feel like giving them away. I guess it's time to give them a try.

Thursday's dinner event is a fundraiser for Springfield's Boys and Girls Club Family Center. The keynote speaker, Ruth E. Carter, is an alumna of the center and a Hollywood costumer designer who I interviewed on set at Mystic Seaport when she designed the costumes for Steven Spielberg's 1997 movie "Amistad."

I would like to say hello to her and also see several people from work who are going. It is a good chance to get dressed up and go out for a good cause.

I hope I feel up to it.

Adventures in Boston

I am not talking about the kinds of adventures I had in Europe, but rather about going to Dana-Farber yesterday and to Brigham and Women's hospital today.

There is nothing seriously wrong with me. It's just that I have been haunted by the throwing up sickness for about a week. I called Melissa and she said it did not sound like flu because I have no other symptoms. But I could feel that I was getting dehydrated, and she said to go see her, have some blood work done and get some fluids.

Ativan helps, but I couldn't take it while driving. Joe had an important meeting or he would have taken me. Plus, he knows what it's like for me to throw up in his car...into a plastic bag with a hole in the bottom, no less. I wouldn't have asked anyone else, so I set out yesterday with my plastic bag and some saltines.

I made it in OK and was relieved to see that my labs are fine.

After getting that out of the way, I told Melissa that my reason for coming was really to show her my new Spanish boots. She said that she had noticed them right away, so I was very gratified...although still nauseous.

First in the line of suspects is the Exjade. I didn't take it during my trip and felt just fine. As soon as I took it at home, up it came. I took a break for a couple of days, downed the five pills dissolved in water again, and got sick again. She said to just stop taking it. Free at last!

Since my hematocrit continues to be normal, on my next visit I will schedule a "therapeutic phlebotomy" appointment as another way to get rid of the excess ferritin that accumulated in my liver after multiple blood transfusions.

Dr. Alyea came over while I was in the infusion room and asked if I had watched any of the Australian Open. When he talks tennis I know that I am not making medical history. He was accompanied by another doctor and introduced me as an excellent tennis player. I told him that wouldn't have described me during the past week, and he said we'd get my insides straightened out so I can get back on my game.

He said I should take a booster of increased prednisone for about five days because when you're on a low dose like mine – 5 mgs. a day – your body can forget to produce enough on its own (or something like that) and a booster would help me feel better.

Meanwhile, on to the award for the most annoying nurse of the day:

When she was reviewing my medications before the endoscopy today, she asked why I take the drug Kayexalate. I said I take it because my potassium was high, but with a once-a-week dose it is fine.

"Are you in kidney failure?" she asked. "That's what high potassium means," she said, or something like that.

I told her that I was in kidney failure three-and-a-half years ago but that I am fine now.

She eyed me suspiciously, as though I had no clue whether I was in kidney failure or not.

After the procedure when she was removing my IV, she started in on me again.

"Have you ever seen a nephrologist?" she asked. Since I happen to have seen a nephrologist (a doctor who specializes in kidney care) I knew what that meant, although when I first heard I was seeing one of those, I thought they said I was seeing a necrologist in preparation for my death.

I repeated that my kidneys are FINE.

With that she finished up with my discharge instructions. And wearing the Massachusetts Academy of Ballet sweatpants that I had put on earlier in the morning, I pirouetted out of the hospital.

Of minor mishaps and mental lapses

If you're easily grossed out, maybe you should skip this post. I thought of not writing it, but with one day's worth of hindsight I think it's kind of funny, so here goes.

Yesterday Joe drove me to my clinic appointment. I put on a pair of nice black pants, a purple T-shirt, purple sweater and black jacket. I ate my breakfast of cereal and blueberries and then, in case I threw up, grabbed the blue bag in which the newspaper had been delivered. I've continued to vomit on and off, some days not at all and sometimes twice a day.

We were about halfway there, and on time, when I felt that I might be sick. I tried to stop it by taking deep breaths, but there was no way. I grabbed the bag and lost my breakfast in it. But I hadn't realized the bag had a couple of little holes in it. I didn't know what to do. It was coming out of the holes and going all over my clothes and onto the car. Luckily, Joe had a better bag in the back seat; he reached back and got it. So I got bag number 1 into bag number 2, and at least that was the end of the leaking.

I tried to mop up with napkins, but the car fared better than I did. Since we pass Diane's on the way to the clinic, I called to see if she could lend me some clothes. Of course she said yes. In my shrunken state I'm quite a bit smaller than she is, but I found a pair of pants that I could wear if I rolled the waistband over a few times. I found a shirt too.

I didn't match anymore – gold pants, white shirt and purple sweater. But I had learned a lesson: Always check a bag for holes before throwing up in it.

The clinic visit didn't exactly put a smile on my face. My platelets, which had climbed into the teens and twenties, were back down at 8. I was disappointed, because if they stay higher I can decrease visits to once a week, and I was also a little spooked. Could it be a sign of relapse? (Melissa said no, everything looked fine, and platelets can bounce around.)

I knew my hematocrit would be low, and at 25 it was. My white count was stable at 5.8, although it went down from 7.1, where it was a few weeks ago. It always makes me nervous when that particular number goes down at all, but both Melissa and Dr. Alyea assured me that it is fine where it is. Meanwhile, Dr. Alyea said I should have an endoscopy to try to figure out the cause of the nausea and vomiting, so that is in the works.

I went on to get two bags of platelets and two bags of blood, closing the place down after 7 p.m. Diane had said she'd drive me home, and I felt bad that it got so late, but she didn't seem to mind. 

The patient next to me in the infusion room was getting chemo for lymphoma. I couldn't see him, because the curtain between us was pulled, but I could hear him telling his story, loudly, to his nurse. He said he had had a tumor on his pancreas that was causing him to lose weight and have weakness in his legs. (I'm not sure how this works, but this is what he said.)

I immediately got "hijacked." "When they do the endoscopy, will they discover that pancreatic cancer his been causing my similar symptoms"? I asked myself. 

I told myself that I have been tested so much that such a thing would have been discovered. Then I talked to Emily on the phone. "He was probably eating and losing weight. You are not eating much and you are throwing up." Oh. I wanted to pull the curtain back and ask him, "Hey, were you eating when this happened?"

Then I talked to Jeanne. "Haven't you had enough problems without picking more up from other people? You don't have pancreatic cancer." Oh, right.

Today I did the more sensible thing, which is, instead of just asking around, I talked to my nurse. We were on the phone talking about scheduling the endoscopy, and I told her my thought pattern and asked if she thought I might have pancreatic or some other cancer.

No, she said. She told me what I had told myself, that I have been tested and scanned and nothing like that has shown up. 

It's hard when you're in that infusion room next to someone who talks loudly about his or her symptoms. Next time maybe I should bring an iPod.