Throwing in the towel

The pain-free days did not last long. The tooth pain came roaring back, and the endodontist said finally that there must be a crack in the tooth allowing bacteria to get in. I am going to get it pulled on Monday.

When I sent out a text to some people telling them of the upcoming extraction, I concluded: "Send baby food."

I really wanted to save that tooth because I am losing so many around it, but I couldn't go on like that. I don't think my Dana-Farber doctors will want me to get implants, so I'll have to talk to someone about dentures down the road.

I had asked Melissa if I could take Advil because it seems to help with dental pain. She said OK, but not too much and not for too long. I knew that the reason I can't take Tylenol is because it is bad for my  liver, but I was unsure about ibuprofen. Melissa said it is bad for my kidneys, which already took a wallop when I went into kidney failure after my last transplant. I took Advil three times in the past few days, but it didn't help anyway.

So it is oxycodone or pain, every four hours. I will be glad to get rid of that.

The MRI on Friday almost made me forget the tooth pain. Nothing like the feeling of having your head drilled into to make you forget about your other problems. It was hard to make it through the hour-long procedure. Claustrophobia wasn't the worst part of it. I kept feeling like I needed to cough due to post-nasal drip from lying on my back so long. At one point I did cough, earning me the opportunity to have one whole sequence repeated. I had to ask them to slide me out of the tube for a sip of water, not an easy thing to do when you are lying on your back and cannot move.

Also just so I wouldn't have a dull moment, there are some painful little blisters on my lip right where the squamous cell cancer was recently removed. I will have to call my dermatologist about this on Monday.

On a positive note, the piece I wrote for Yankee Magazine on the Crazy Orchid Lady of Shelburne Falls, Mass., was accepted, and a check is in the works. The magazine has crazy lead times and so the article will not be in for a while.

 I finally got to tennis on Thursday. My legs didn't bother me until the end, and it was great to hit the ball. George said that the three other players in the clinic have improved greatly since the fall and that I was doing a good job keeping up with them. I said it must have been all that lying on the couch, visions of tennis balls dancing in my head.

Platelets no longer pokey

I got some excellent news at my Dana-Farber visit on Thursday: My platelets are normal for the first time in five years! Like most writers, I dislike exclamation points, but I think this case merits an exception.

Well, they are almost normal. My platelet count is 148 out of a normal range of 155 to 410. However, unlike in horseshoes and pregnancy, almost is good enough in platelet counts, so normal it is.

I flashed back to the bad old days of platelet counts as low as two and talked to Diane about the horrible night when I was at death's door and needed platelets before I could get an emergency procedure, but she couldn't donate for me because she had taken Advil, which acts as a blood thinner. It was touch and go until the blood bank reached a man whose platelets were a good match and who went in to donate just for me.

My other counts were normal as well, except for my sodium, which was a little low, which means I will have to eat more salty snacks. Too bad I prefer sugar.

I told Dr. Alyea that I was low on endorphins from having had only yoga and walking for exercise, and he said to go out and play some tennis to the extent that my legs don't hurt. Problem is, my quads still are sore. I had an MRI of my legs in which I was strapped down like a patient in a straightjacket. The results showed some inflammation but nothing serious. Since that was so much fun, I have now earned the chance to have an MRI of my spine. I am not totally sure what this is about, except that Dr. Alyea wants to check on the condition of my discs. That procedure is scheduled for Friday. I wrote Melissa to say that I was probably getting ahead of myself but that I wondered what they would do if they found something. She wrote back that yes, I was getting ahead of myself but that she would call me to discuss.

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

Testing, testing...again

Last week I felt like my legs were getting worse. Instead of growing stronger, they were getting more wobbly and weak. And my hands were shaking more than before.

I did go to two yoga classes, and they went better than the previous try. But whereas I had run (sort of) around the lake in the past few weeks, last week I didn't have the strength to do it.

I also took Katie to New York for a day and went to a dance concert and an art lecture at a gallery in Northampton. And went with friends to a maple sugar shack where we had delicious pancakes. I envy you Californians a lot of things, but I like this March and April tradition in New England.

So?

I was concerned about my legs. And about my hands shaking more than before. I thought maybe my red count had fallen. But my breathing was fine, so I let it go until my appointment, which was yesterday.

Sure enough, my counts were fine. Dr. Alyea printed them out for me "as a souvenir." It said hematocrit, 31.4; white count, 7.8; and platelets, 81. Then just for reassurance, because I've brought this up before, I told him I still have problems with word retrieval and memory loss. I was waiting to hear the usual: there is really something to chemobrain; so much has been done to me and I need more time to fully recover; etc. Instead he looked at me when I said "yoga" and said maybe I shouldn't push myself so hard. Then he said I should get another MRI to make sure everything's OK in my brain.

I hesitated. "But I've had MRIs and CAT scans recently." He said to do it anyway – that day – so we can put this behind us.

The first time I got an MRI I was pretty freaked out by all the sounds of banging and drilling and rifle fire. Now I've had it done so many times I almost fell asleep. The technician said it would be ready to read either yesterday or today.

I called today and didn't hear back. Off went my imagination. So many things to do, and all I can do is catastrophize. "My brain is bleeding and sending off little sparks that are making me walk with a lurch and bump into things." Or, "I beat leukemia and now, so sad, little monsters will be coming out of my head." (Don't worry, I made that one up.)

I talked to several people today who were all very rational. They all said, STOP, STOP, STOP! I wasted one week worrying about my counts, and now the MRI is taking over this week? I've had lots of tests. I've been good at going with the flow – sometimes – and sometimes the crazy person comes out. I will try to get her calmed down tomorrow.

News flash:

At yesterday's weigh-in, I was one pound higher than my normal weight. So I've gained 25 pounds. When I was so skinny, I shared my weight with everyone. I'm not telling now. I'm watching my fat intake. I guess it's the normal process of starting to eat again and also the side effects of the prednisone.

This Comedy of Errors was not too funny

I posted last night that I was on my way down for a repeat MRI of my brain. I wasn’t exactly sure what they were looking for, but I stayed calm, figuring it was a pre-transplant follow-up of my last MRI, which was about two weeks ago and revealed nothing alarming.

For you to understand the confusion that ensued, I have to tell you that in part, I am a bionic woman. Well, I don’t perform any great feats, and I wasn’t reassembled after a major accident, but I do have amplified hearing and some artificial parts due to an operation I had some 20 years ago.

I developed a condition called otosclerosis, which occurs mostly in women in their 30s and in which hearing loss sets in due to a hardening of the part of the ear called the stapes. One of the local doctors, Harold Harris, said he could perform a relatively common procedure called a stapendectomy with prothesis. He removed the malfunctioning stapes and replaced it with a Teflon piece held in place by a small piece of metal. The only side effect: It would take a while to adjust to the new noisy world, and indeed, for a while I was made frantic by the noise level that I had never experienced.

I thought that was the end of it, until I needed an MRI. It first came up a couple of years ago when I thought my hearing was diminishing, and the ear doctor in Springfield (Harris was now retired) suggested an MRI. (My wildest thoughts set in: Had the thing come loose and was it now floating around in my head? Did I have a brain tumor?) When I went to get the MRI, the woman at the desk asked, “Can you hear well out of that ear?” “Very well,” I said. “Well,” she said, you might not hear at all if you get this MRI.” Okaaaay. I got a CAT scan instead.

Last night, as I was wheeled into the hallway outside the room where they do the MRIs, a technician came out and handed me a check-list. My eye went straight to the question: “Do you have any metal implants?” I didn’t even fill it out. I just told her about the stapes and the little wire and said it was in my file and I had had an MRI recently.

She was, however, poised to do the test on a new, high-power machine that would not be safe for the device that I have, called a Schuknecht. This is all in my file, so I don’t know why she seemed so surprised and somehow fed up. She called transportation to come get me, then went in her office and closed the door. I dozed in my wheelchair on a long white corridor for about half an hour, then gingerly knocked on her door and asked if she could call again, since I was having trouble breathing in my super-duper mask that I wear when off the pod. Another half hour passed and someone came to rescue me.

The tech said I could have the MRI on a lower-powered machine at some other time. I said to please not schedule it for tonight, or this morning, or whatever you call it, and she agreed.

I finally got into bed when, at around 3:30 a.m., my nurse, Sergie, said they had come for me again. If I didn’t go, there was no way of knowing when they’d fit me in again. So down I went, to two different technicians and a different machine. I got wheeled up to the door and one of them said to the other, as though I wasn’t there, “The nurse asked her if there was any metal in her head, and she said no.”

“That’s not what happened,” I said, and I started to explain. “Never mind,” the technician said, “We can do it.” Most everyone at "The Brigham" has been very nice and very professional, but these two were objectifying me in a very objectional manner, at 3:30 a.m., no less.

Anyway, since they decided they would put up with me, I lay down on a narrow bed that moved me into a cylinder where I could not see out. The technician gave me skimpy earplugs which were not a big help as the sounds machine-gunned around my head. The only good thing about the hour-long procedure is that I was so sleepy I think I dozed off. Also, transportation was there and ready to help me make my escape.

I haven’t heard any results yet, but I figure someone would have mentioned it if there was something dire.

Let’s just say it was not a good night/morning.

Testing, testing

I was sitting here falling asleep last night while the second of two bags of blood finished. I thought I’d write an update, but I couldn’t concentrate. Today I’m trying again, slogging through a mess of typos of my own doing. My fingers and my mind seem to be suffering from a disconnect. I think it’s the meds: see below.

I’d rather be in the city that never sleeps; here in the hospital that never sleeps, I had 10 vials of blood drawn at 3 a.m. yesterday. These are for pre-transplant testing for insurance purposes. They make you jump through hoops, probably to prove you are strong enough to get through transplant. I also had an echo-cardiagram and, once my pneumonia is under control, will have to pass a series of pulmomary tests.

The verdict on the pneumonia is that it is aspergillus. So I am back on Voriconozle, my old standby. The fevers are coming down, so that’s a good sign the “Vori” is working, although once I start coughing it’s hard to stop, and my ribs are really sore. If everything continues to stabilize, I might go home early next week while we wait for a donor.

I had mentioned that I had a headache, and one of the doctors suggested an MRI “to see if your disease has spread to your brain.” Couldn’t he have found a better way to say it, such as, “We just want to make sure everything’s OK.” I thought I might avoid it because I told them the headaches were better, but this morning while I was half asleep somebody came and took me for the test. It’s loud and jarring; it sounds like someone is drilling into your head. In any case, good news on that front: There is nothing wrong with my brain.

I just came back from ultrasound testing on my legs to rule out a blood clot, because my ankles have remained pretty swollen despite taking a diuretic. The transporters taking you to these tests love to yell ahead, "BMT," "BMT" on six. (As in Bone Marrow Transplant). I'm sure it's the most efficient way to get quick service, but it also makes you feel totally self-conscious. In any case, the doctor who did the test told me the results: no blood clots.

 I’ve been taking lots of drugs – codeine for the cough, Ativan to calm me down, Demerol when I get the shakes as a fever rises, usually once a day. Also every time I turn around they are giving my IV-Benadryl, to head off reaction from platelets or some of the antibiotics I’m still on. Much of the time I’m pretty spaced out, which is fine with me.

My cousin Jeanne took the train up from New York on Tuesday. We’re nine months apart and have always been very close. For some reason when we were kids, we planned that when we grew up, we’d open a pet store in Florida together. Obviously, we didn’t. She works in the advertising business in New York and I’m a reporter in Western Massachusetts. We talked for a long time and then had “cocktail hour.” For ambiance, I turned on the electric candle that Vytas had brought me. We drank two little Cokes and toasted to a happy HEALTHY New Year.