Saturday, January 31, 2009

New stem cells signed, sealed, delivered

I meant to post yesterday evening at my leisure while awaiting my cells, which I thought were due to arrive at the cell manipulation lab at 9:30 p.m. and would therefore come to me around 11. (Cell manipulation lab sounds so futuristic; I am grateful that in terms of scientific advances, the future is now.) Then Helen, my nurse last night, said they would be ready for actual infusion around 9:30 and that she would begin pre-medicating me at 9 with Ativan and Benadryl, at which point I got all discombobulated and couldn’t eat my dinner, let alone write.

It’s not that you have to do anything to receive the cells; you just lie there and try to stay calm. But it feels momentous, especially when they hook you up to a monitor tracking your heart rate, blood pressure and oxygen saturation. Of course it also feels enormous because I know how important those cells are to me. The infusion took about 45 minutes and went smoothly most of the way while Helen watched the monitor and me. I dozed on and off. We had the TV on ABC’s “20-20,” which was doing a piece on a woman who gave birth to a dwarf (or is it “little person” now). She had other children, but she wanted her small child to have a sibling soul-mate, so she adopted another little person from China, and the two successfully navigated childhood together.

You might wonder why I bring this up; it’s just part of the scene, in an odd way.

The infusion had just about finished when I reacted, either to the cells or to a fever I was going to get anyway. I started shaking vigorously, and my heart rate went up. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who came in quickly. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. Also they put me on oxygen.

Concerned that the shaking and shivering and fever would deter my new baby stem cells, I asked the doctor about it, and she said not to worry. Everything calmed down in about half an hour, and, after soaking through two hospital gowns, I finally got a few hours sleep. Today I am a little puffy and bleary-eyed, and I’m starting to feel the beginning of the predicted mouth sores. Somehow, my platelets went up overnight on their own, from about 10 to about 40, so I don’t need any “products” today. I think I will take that as a good omen.

Diane brought me a birthday present yesterday: a card with a pop-up bouquet and a bag filled with the other kind of product that I now need after my transplant. It contained shampoo, conditioner, lotion, body wash and lip gloss, all in pretty perk-me-up colors. (After transplant, you’re supposed to start with everything clean and new and throw out old products.) On the card, she wrote, “Here’s to a wonderful and healthy life with your new mystery donor!”

Last night, as the evening weirdness settled in on me, Diane reminded me, “You’re getting another shot at a whole new life. It’s great. It’s the miracle of modern science.”

It’s wonderful to have a baby sister who anticipates my every need, who picks me up and who washes, folds and delivers my laundry with a smile.

Thank you everyone for your support – your thoughts, prayers, comments, good vibes, messages, calls, visits and cards really mean a lot to me. The jokes help too.

Oh, about that fruit that I wrote about on the last post. The dietary technician came in and put an end to that. I am happy enough for now with my canned peaches. I don't think I could eat an orange anyway.

Wednesday, January 28, 2009

Is that a banana under your Cheerios?

I buried the banana in the Cheerios and put the peel in the trash instead of leaving it on the breakfast tray. It made me wonder if my brain is OK after all.

Explanation: I know that since I am now on the restricted transplant diet, I can't eat any fruit other than that with thick skin. Having gotten conflicting answers about whether I can eat even oranges and bananas at this early point, I took matters into my own hands and felt a little like I was hiding contraband as I did it.

The doctor said I could have bananas and oranges, but they are not on my official BMT menu. Diane brought me a few oranges and bananas, but one nurse said to wait until I get home to eat them and another echoed her. Of course it doesn't really matter if I have the fruit, but maybe wanting it is a way of trying to hold on to part of my old routine. So…I figured a little banana wouldn’t hurt me. When I cut it up, it reminded me of being home, when the dog comes running as I peel the banana and I share it with her. I miss the dog. Too bad she can’t visit.

I am getting a ton of IV fluids with the chemo. This morning when I woke up and looked in the mirror, I noticed that my upper lip had puffed up, Renee Zellweger-style. I know that for some odd reason women pay for collagen injections to achieve this look, but I found it disconcerting, since it isn’t me. A nurse confirmed that it’s from the fluids, and everything will go back to normal when the fluids stop.

My night nurse is often Sergie, a model-beautiful woman from Haiti. I asked her if she had considered modeling; she seemed flattered and said no, she hadn’t. When my teeth started chattering as my fever rose the other night, she got me Tylenol and warm blankets. She covered me with the blankets and tucked my quilt in over them. We chatted for a few minutes and the shaking subsided. She’s the opposite of the rude MRI techs from the other night. Amazing how far a little kindness goes.

Yesterday, though, I had a problem with an inexperienced nurse. A preceptor accompanied this trainee most of the day. When it was time to hang my chemo, both came in, and the teacher led the way. So far, so good.

The IV nurse had to remove one of my IVs and start another, because they’re good for only four days. (I am still waiting to get another PICC line, which should happen today.) After she removed the old IV, blood seeped through the dressing. She applied more gauze, and it seeped through that too. So even though they weren’t planning on it, they ordered platelets.

The bleeding had stopped by the time the platelets came, but I was still anxious to get them in. The trainee came in by herself with the platelets and some other medication, opened the IV pump, and then dashed out of the room saying she had to check on something. It took a while for her to come back, and she succeeded in hanging the platelets. She watched to see that they were running but never came back to double-check.

Meanwhile Nurse Ronni noticed that nothing was dripping into the tube where I thought the platelets should be entering. I have a lot of bags up there – six right now and about the same number yesterday afternoon – and I traced the platelet bag and discovered that sure enough, it wasn’t dripping.

So I put on my mask and gloves and went looking for her preceptor. Sure enough, the IV through which the platelets were supposed to drip had clogged up and gone bad. She and the trainee then came into the room, where the experienced nurse changed IVs and the platelets began to drip. The trainee said, “Thank you for telling us, that was helpful.” (How about, "Sorry about that"?)

I didn’t have anything against her, and she was pleasant and well-meaning, but I think it was too much for me to have had to monitor this. Plus what if I had fallen asleep and I really needed the platelets to stop the bleeding and she hadn’t double-checked?

Later I asked the preceptor to please accompany her trainee when they are hanging something, because “she doesn’t seem to have the confidence and knowledge.”

The preceptor agreed and said she would have been in there, but she had had an unusual situation. One of her patients had bolted out of the pod into the hall and was heading for the elevator, and she had to go retrieve him. Okaaaaay.

Today I have an experienced nurse, so I feel I can concentrate on other things without having to “supervise.”

It’s D-2, the last day of fludarabine. Tomorrow I get the double dose of melphalan. As I said before, my mind drifts into worry-land with the question, “What if the melphalan doesn’t wipe out the leukemia?” (The fludarabine is lower intensity and is intended more to lower my immunities to accept the donor cells, while the melphalan is more intense and has the job of going after the leukemia.)

I must constantly bring my mind back, without getting down on myself for worrying. I need to remember the title of the subtitle of blog: Fighting Cancer One Step at a Time.

Monday, January 26, 2009

Holding pattern is over

I got my first dose of fludarabine, the pre-transplant chemotherapy, on Saturday. I’ll continue getting it once a day until Thursday, when I’ll get a double dose of melphalan, a chemotherapy agent aimed at mopping up what I like to keep reminding myself is a small amount of leukemia. I get my new cells on Friday. Thank you donor, wherever you are.

Dr. Alyea said to expect mouth sores a few days after the melphalan and also a possible thinning of my hair. I still have some fevers (and accompanying shakes) but mostly I feel OK.

It was strange to make the transition from holding pattern to actually taking action. I’ve been here so long (since Dec. 21) that towards the end of the hanging out phase that ended Saturday, I could sometimes distance myself from why I am really here. Once the chemo started, I came face to face again with the worry over whether it will work. The flip side, of course, is thinking that the start of chemo brings me closer to the day when I get the new cells and get better. I’m working on it.

There is no more Zen in my walks. Starting Saturday, I officially became a BMT (bone marrow transplant), with all the restrictions that entails. No more going out the double doors to rapidly walk 30 laps (a mile and a half) around the sixth floor. Whether counting the laps or trying to get in touch with healing energy (sorry if that sounds too new-agey) or just quieting my mind through breathing, I felt that the walks calmed me down. I know, I’m breathing all the time (thankfully) and can still connect with my breath, but it helps to keep moving.

Now (still wearing gloves and a heavy mask), I walk up and down the pod. I couldn’t even begin to count laps per mile, because it’s the shortest pod I’ve been on. Also it’s an obstacle course, with chairs, equipment, janitors’ carts and other hazards making it hard to find a clear path. It always seems to be busy out there, with doctors, nurses and aides going in and out of rooms or congregating to discuss a patient. Still I managed to walk twice today for about 25 minutes each time and even managed to find an area of about six steps to get a little speed up. And it’s all about getting around the obstacles, isn’t it.

Knowing that the dietary restrictions would set in again soon, I had so many big salads last week that a nurse asked me if that was all I ate.

I had company all weekend, which was great. I felt bad when I nodded off during conversation after they came all this way, but I'm sure they understood. Nancy drove from Syracuse; Emily flew from Pittsburgh, and Serena took the train from New York. (Pause here to get stuck twice for blood cultures. Ouch. Poor arms.) Diane also popped in, and Jim brought Katie today after school. Correction: Katie drove Jim. Yikes.

Last night I had an interesting dream. I was in a house where a big bear was rummaging around inside. I tried to run outside but I wasn’t fast enough, because the bear was drawing near. So I plastered myself against a wall and stayed very still. Next thing I knew, the bear had left the house and I was safe.

Oh by the way, for anyone following the MRI story, I got the results back and my brain seems to be OK!

Saturday, January 24, 2009

'Running for My Life' wins Literary Weblog award

Many thanks to everyone who voted for my blog and spread the word in the fifth annual Medical Weblog Award competition. 

"Running for My Life" won Best Literary Medical Weblog in the competition, sponsored by Medgadget, "an internet journal of emerging technologies." According to the final tally, released yesterday, I received 43 percent, or 456 votes, followed by Notes of an Anesthesioboist with 29 percent, or 306 votes. The other votes in that category were divided among the remaining three finalists.

I came in third out of 13 in Best Patient Blog, the other category in which I was nominated. The winner was Six Until Me, a blog about a woman's life with diabetes.

I even won a prize: a Palm Z22 handheld and a year-long subscription to Placebo Journal, a collection of medical humor. (We'll have to see about those.) The real prize of course has been connecting with so many people through shared experiences, finding so much support and hopefully being able to provide support too.

Also a big thank-you to my good friend Margaret, who nominated me for the award and generally helps keep me going.

Thursday, January 22, 2009

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.

Wednesday, January 21, 2009

Queen of Rashes stays true to form

Yesterday and the day before I was just sitting around minding my own business when I broke out in a mysterious rash. It wasn’t a drug or transfusion reaction because I hadn’t gotten any blood products and I wasn’t on any new antibiotics.

I watched as the hives popped up and then melded together, blossoming into bright red, itchy patches. The Queen of Rashes does it again. I’ve gotten so much Benadryl since then that I have lost track. I continued to get it today, and so far, no rash.

I also got a painful sore in my mouth. It’s not technically a mouth sore, but it’s red and inflamed. Yesterday I went downstairs to the dentist, as part of my pre-transplant workup. While I was there, I asked him to look at the thing in my mouth. He poked and prodded and announced that it would go away. Today it hurt so much that I could barely eat, so I broke down and took some Oxycodone, and then took another dose later. Needless to say, I spent much of today pretty zonked.

The inauguration kept me busy most of the day yesterday. I stayed in bed for a long time and watched the events starting around 9 a.m. I was transfixed. And although I try to avoid cliches, I have to say that much of it sent shivers down my spine. I felt a little decadent staying in bed so long, but then I reminded myself that I am in the hospital and I’m allowed to lie down.

I’ve been trying to do my bed and chair yoga and stretches. During the early part of my “visit,” I felt so sick and disheartened that I couldn’t even think of exercising, except for walking. But as I’ve begun to feel more like myself, the motivation is returning. And after I’m stretched out and have done the poses that I can do without hurting myself, I feel pretty good.

I assume that in a few days I’ll leave the holding pattern and start receiving my pre-transplant conditioning chemotherapy. I think they’re going to give me my own special concoction, but I’m not sure what that will be. I hope I don't lose my hair!

It's almost 10:30 and I was about to get into bed with a book, but I was just called down to MRI for a repeat look at my brain. They do most of the emergencies during the day and the in-patient population at night. My nurse said I was lucky, because sometimes people get called in the wee hours. Oh well, at least I just took my Ativan, and I might even sleep through it.

Sunday, January 18, 2009

Dreams...on the court and in the kitchen

I dream I am inside, playing a doubles match. I am at the net. A long point is playing out cross-court, out of my reach. I get almost hypnotized watching the ball go back and forth. Suddenly the ball comes to me! I am not prepared. But I recover. Whack! I hit a sharply angled volley, unreachable. Whew. Wow. My partner and I win the point, and the game.

At the changeover, I look around and realize there are lots of people watching and, for some reason, others just milling around. It’s crowded in there. I remember that I am not supposed to be there. I have to get out of there. I panic. I find a woman who looks official and I stammer out an explanation. Not feeling well. Not supposed to be here. Bone marrow transplant. Germs.

A substitute materializes. The match will go on, without me. I feel guilty about interrupting the match and scared that I will get sicker. But I'm still happy about that volley.

I dream that we are emptying out the apartment in New York. My father is there; my mother has just died. (In reality he died first, and both parents were gone when Diane and I cleaned the apartment out more than two years ago). I look through a dining room cabinet. Crystal punch glasses. Miniature tea sets. Delicate napkin holders. Beautiful china. Cocktail napkins with pretty designs.

My father and I go into the tiny galley kitchen (so small that four of us could never fit there, although three could squeeze in like sardines.) I look in the kitchen cabinet, full of the things I remember, right where they belonged. Calcium pills, vitamins and prescriptions on the bottom shelf. Above, Saltines, LeSeur peas, tuna, tea biscuits, dark-chocolate-covered "Little Schoolboy" cookies.

I start crying. “I wish I could be 13, no maybe 14, and go to school and come home and all of us have dinner together,” I say to my father.

He smiles, warmly, sadly, lovingly. “Don’t we all,” he says. “Don’t we all.”

When I wake up, I lie under my quilt, thinking about this second dream for a long time.
In reality, of course, 13 is not exactly always a picnic. But who doesn’t wish to go back to a time before anything really bad happened, a time when someone else took care of us?

If I went back, none of the bad things would have happened.
But none of the good things, most notably my children, would have happened either.

Thursday, January 15, 2009

Life in the 'big house'

This is a nice hotel, which is a good thing because I’ve been here three weeks and may not go home until after my new transplant, which is now scheduled for Jan. 30.

I wake up at least twice a night drenched in sweat, and help is only a buzzer away. A PCA (personal care assistant) comes in with a new hospital gown, and I sit in a chair while she changes the sheets. It’s just sweat, but I told her the other night, “I feel like a little kid.” When she is three-quarters done making the bed, I climb back in and she puts a clean sheet and new blanket on me and tucks me in.

Bright and early, a nurse comes in with my pills.
“Your pills, madam.”
Well, more like, “Good morning, I have your morning pills, how was your night?"

The list:
Labetalol (for my blood pressure, which rose when I came into the hospital), Prilosec (antacid), Levofloxacin (antibiotic), Tricor (for high cholesterol, also new for me), Valcyte (anti-viral to treat and prevent CMV), Voriconozole (anti fungal for the pneumonia), Lexapro (anti-depressant), folic acid, multivitamin and sometimes magnesium.

Then a nurse or the unit coordinator brings me coffee, mustachioed Steve drops off the New York Times, and I lounge half the morning and then go do my 20 laps.

I get platelets or blood every few days or so, and, as needed Ativan or cough syrup with codeine. Sometimes I feel like I’m being held together with tape. On some days I thought I would write but I could barely find the keys, and my hands shook. I get Benadryl with every transfusion, and I’ve also had some Demerol when a fever was coming and I had the shakes. But my fevers have decreased, and they discontinued the Demerol in favor of warm blankets, which are really comforting.

The other night there were workmen in my bathroom after midnight doing battle with a leaky faucet. I said I didn’t mind the drip that much, and suggested they return the next day. They kept at it for a while and then did come back the next day, I think around 8 a.m. A woman came in to do another EKG, and I said, “There are men in my bathroom.”

She eyed me as though she thought I was delirious, but as if to humor me, she went over and knocked on the bathroom door. Sure enough, two workmen were squeezed in there. She told them not to come out until she finished the EKG.

The pneunomia is continuing to clear up. I can take a full breath without coughing, and the oxygen saturation that they check with my vital signs is nearing normal again. A week ago I couldn’t get past about 85 percent, and I went on oxygen for a little while one night. Now I’m back up around 98 percent.

A hairdresser from the Friends Boutique at Dana-Farber is coming to give me a haircut this afternoon. I hope that’s as exciting as the day gets.

Sunday, January 11, 2009

Just when you thought the voting was over

Hello, this is Ronni's friend Margaret posting a quick request. I've entered Ronni's blog in the annual blog awards competition at After much arm-twisting, she has finally agreed to let me ask you to go to the Medgadget web site and vote for her blog. It's listed in two categories, Best Literary Medical Blog and Best Patient Blog. Ronni was reluctant because she is so moved and inspired by so many other peoples' blogs ... but I think she finally saw that the best way to get me to stop pestering her was to give in!

So please click here and scroll down to vote for Running for My Life in both the Literary Medical Blog and the best Patient categories. One vote per IP address; voting closes at midnight, Sunday, Jan. 18. She has the better shot in the Literary category. Let's lift her over the top!

Thank you!

Saturday, January 10, 2009

Inhaling and exhaling

Yesterday I passed the dreaded pulmonary function testing, which is required for insurance purposes. I did it before my other transplants, but I was worried that the still-resolving pneumonia might make it more difficult. I guess the purpose of the test is to show that your lungs can hold up under transplant, but it’s as much a mental as a physical exercise, which you could fail just by having a panic attack.

A technician puts a clip over your nose and leads you through various tests. For one test, you put your mouth around a tube and breathe in and out and then take a deep breath in and push push push all the air out until you think you might turn blue. For another test, you put your mouth around a piece of equipment that looks like a snorkel and then, with nose clip on, breathe evenly for about two minutes and then do a big inhale and exhale. There was some writing on the bottom of the machine and I repeated each letter to myself to distract myself from the sensation that I was drowning.

I had a funny nurse yesterday who I remembered from my first treatment in 2003. Her name is Mel and she has a deadpan manner that used to crack my mother up. Yesterday we were talking in my room about the fact that I didn’t need platelets. I said I figured I’d probably need them in a day or so.

Mel said that you never know, my donor could still wake up and knock out the bad cells and my counts could come back up.

Then my cell phone rang.

“That could be them calling right now,” she said. (Exit smiling.)

I had shakes and a fever of 102 around 3 a.m. This set me back in terms of possibly going home before the transplant. In another downer, the kids were going to come this weekend but (wisely) canceled due to the storm. Diane and Margaret came, and I was glad to see them.

I thought I would lie down and try to meditate this afternoon, but quickly fell asleep. I woke up when a woman came in to do an EKG; one minute I was all warm under the covers, and the next I was having my shirt pulled up and cold sticky conductors applied to my skin.

The mental game is a work in progress. The high fever, the prolonged hospital stay, the postponed visits (not their fault…I would have worried about their safety if they came) edge me back into doom and gloom and how did this happen territory.

I went over to 6A for a pep talk from Myra. She reminded me that I need to take one thing at a time. The pneumonia is better. Next step, mop up the leukemia and get the transplant. Stay away from the dark side; all it can do is hurt me.

“Give yourself one or two seconds and then give yourself a kick in the butt,” she said.

Right now I'm giving myself a mixture of vanilla ice cream and strawberry jello. A little comfort food never hurt anyone.

Thursday, January 8, 2009

Platelets, PICCs and perking up

Today I got two bags of HLA-matched platelets, bumping from 6 to 51. That was a very nice bump, and it earned me the distraction of having my PICC line rewired at my bedside. I wouldn’t say this exactly hurt, but it was a very strange sensation to have a wire pulled out of my arm and have another one inserted. Eeech. Well I’m glad to have it back up and running, because I had to be stuck three times last night after the PICC was deemed out of order.

I don’t think I’ve explained this recently, so just in case anyone is wondering, PICC is short for peripherally inserted central catheter and is a form of intravenous access like a Hickman, although easier to insert.

I had a better night’s sleep last night and an early morning fever of 100.7, which is lower than it has been. Dr. Martha Wadleigh, who heads the team supervising my daily care, looked me over this morning and said, “You look well. We’re very pleased.” This picked me up considerably.

I hardly watch any TV, but tonight I thought I might get a laugh from last night’s episode of “The Daily Show.” I turned Comedy Central on early and caught the end of “Scrubs,” the hospital comedy. The story centered on three transplant patients who had each received an organ from the same donor. Turns out the donor was infected with rabies, and one by one the previously cheerful patients were shown dying. Once I saw what was happening, I turned the show off. Not a good distraction.

I did the sixth-floor walkabout twice today and am about to head out for a pre-bedtime stroll. Walking is good for my lungs and of course for my general well being. If I count and walk, there isn’t much room left for catastrophizing.

Wednesday, January 7, 2009

Holding pattern

I thought I might be able to go home this week, but now that seems unlikely because I am still running fevers, although the pneumonia does seem to be getting better. I saw Dr. Alyea today and he said it looks like the donor is lined up for the fourth week of the month. I told him it made me nervous to be sitting around with leukemia in me, and he repeated that there is very little of it. So there are some good things to report.

My platelets are very low – around 6 when last checked this morning – but I am not getting a bump from general non-matched platelets. This always happens to me. They are hoping to get me two bags of what are called HLA-matched platelets tomorrow. The PICC line in my arm somehow moved, and it needs to be put back into the proper position, but they can’t do it without getting me more platelets.

In other exciting news, my blood pressure was high, so they gave me a pill for it, which made it go low and made me get light-headed. I stayed in bed for a bit and eventually felt normal enough to walk the 20 laps around the sixth floor.

Ben and Joe came yesterday; Joe stopped in on his way to the Bruins’ game, and Ben, who was visiting friends, came over before dinner yesterday and then came back today before tonight’s Celtics game. Seeing the kids always picks me up.

I’m feeling a little despondent today. I feel like I got lifted out of normal life and dropped into a nightmare. I walked over to 6A for another pep talk from Myra, and as usual, she did a good job. She told me to stop looking back and to use my energy for staying strong and fighting.

She also told me she hoped I got to go home for a bit because, she said, “You need a haircut.”
I guess I need to remember to keep my priorities straight.

Sunday, January 4, 2009

Taking a small step back from the edge

I can’t say I’m my usual, chipper, go-get-em self, but I think I have taken a step back from the edge. This is probably because a plan is emerging and I feel a little better. Although I still have some fevers, they are decreasing.

Also I seem to look half alive, which seems to please the doctors and which, therefore, pleases me. “You look good,” they say, as though partly surprised but also encouraged. One day a technician came in looking for the patient, and she wasn’t sure if it was Diane or me until she noticed I was the one with the tubes attached to the IV pole.

Dr. Alyea said they might have a new donor lined up by the third week of January, which seems pretty fast to me; maybe I can cross off the scenario where I waste away while waiting for a donor. He said they’d like to get me home in a few days, but only if I have at least a day without a fever. Meanwhile I’ve been getting blood and platelets almost every day. Yesterday I got two bags of platelets, which bumped me to 22, obviously much better than some of my lows but still low enough to get a blood blister on the roof of my mouth from eating a meatball. I feel pretty nostalgic about the old high platelet days just a few weeks ago.

Yesterday PJ popped in from the blogosphere; well, actually, she popped in from Rhode Island, where she lives, having been in Boston for the afternoon. We made a connection through our blogs, then started to talk on the phone, and now we’ve met in real life. It was great to see her.

Today three of my friends from tennis came. We joke that you can’t be on our team if your name doesn’t begin with a D. Obviously there are exceptions, but my three friends who came today are a case in point: There was Debbie Rowe, Deb Doner and Donna Young. It was great to see the “Ds,” who sat with me in my room, cheered me up and walked around and around the sixth floor hallway with me.

You fill in the landscape with some familiar details, and it seems a little less frightening. Diane immediately found Steve, the quirky newspaper guy with the long ponytail and waxed handlebar moustache. As she approached him in the Brigham and Women’s lobby to start up my daily New York Times delivery, he said, “Gordon, right?” This makes me wonder whether he has a great memory or whether he doesn’t have many clients. In any case, the Times shows up at my room every day, a reminder of home.

The nurses already know that I prefer their coffee to the dishwater from the cafeteria, so they get me a cup that I have with a piece of pumpkin bread while waiting for my breakfast to come.

This pod seems smaller and more crowded than others I’ve been on. Even though I’m neutropenic, I’m far enough past my transplant that it’s safe to go off the pod. The other night I was walking around the “square” connecting the pods when a nurse walked by and told me that 20 laps equals a mile.

So I did the 20.

Life goes on.

Friday, January 2, 2009

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.