Easy peasy (kind of sort of)

Still life, real life

A friend drove me to Dana-Farber Wednesday, so I have no complaints about the driver.

First stop was 11th floor, head and neck oncology, to see Dr. Goguen, "the tongue doctor" who scooped out a piece of my tongue that had dysplasic, or pre-malignant, cells on it. That was in 2011, on Katie's birthday. I have gotten checkups once a year for a while, and the doctor said it looks fine and can now be checked just by my dentist or my regular doctors.

A physician's assistant who was with her asked if my skin had been darkened by chemotherapy or the sun. I said I thought it had changed a shade after chemo. Either way, she said I looked healthy.

On to ECP, I didn't start right away because my hematocrit had been low last time (from bleeding on the head, caused by Mohs surgery on a squamous cell), and they needed to check it. I had forgotten to get in writing the test results from a finger prick that I got at Dr. Berger's office when I had my stitches removed. I called the office but my doctor's nurse was on vacation and didn't leave a forwarding number. I called another nurse and left a message. She got back to me and said they measure hemoglobin, not hematocrit, and it was 11.

The nurse who did the test originally, as well as the second nurse, couldn't tell me the hematocrit. I thought that was odd because all you have to do is look up the ratio of hemoglobin to hematocrit.

Hemoglobin and hematocrit are parts of the red blood cell.

Hemoglobin is the protein contained in red blood cells that is responsible for delivery of oxygen to the tissues. The hematocrit measures the volume of red blood cells compared to the total blood volume (red blood cells and plasma). 

In general, to get the hematocrit, multiply hemoglobin by three.

At ECP they want the "crit" to be 27. Last time it hovered a little under, but they did the light treatment anyway.

Although I had gotten the hemoglobin from my doctor, the nurse at the Kraft Blood Donor Center had already sent my sample (after two tries because the needle hit scar tissue). It was 33. (Eleven times three!)

So I got the info from two sources that I was good to go.

My friend was standing at the end of the bed while this was going on and continued to stand there while I got hooked up to the machine that my blood would flow into for my the "internal sunburn."

I said he might want to sit down. I felt better after he did.

I just can't ask someone to drive me every other week, but it sure was nice to have a break.

A long way from there: remembering the night of my 8th (re) birthday

With my donor Denise Ledvina when we met in 2011

In looking for my blog post from Jan. 31, 2009 – the date of my fourth bone marrow transplant – I scrolled through posts from later that year when I was at Dana-Farber a lot. In this one from that September, headlined No transfusions!, I wrote:

This week's clinic visit was a shocker, in a good way. I didn't need any transfusions! I had gone ready to spend the day, and I hardly knew what to do with myself. Well, I can say for the first time in a long time that I didn't spend the whole day at Dana-Farber.

Platelets were 21, still very low but up from 10 to 12, where I've been hovering. My hematocrit is pretty low – 25.3 – borderline for transfusion. But since I've been doing a lot of walking, and even a little tennis, I seem to have adapted, although I am kind of sluggish. The fewer transfusions the better, so they let me go because I feel OK. My white count is normal, 6.6, and my potassium and sodium are about where they should be, although the sodium is still low. I guess I need to eat more potato chips.

For a reference point, normal platelets range from 150-450, and normal hematocrit for women ranges from 34.9-44.5

Those platelets were pretty low for running around playing tennis. It's a good thing my friend Donna didn't know or else she wouldn't have let me.

The comments struck me more than the low counts, though, from back in the day when people commented on the blog instead of on Facebook.

PJ (aka Patricia), Ann and Dori, fellow leukemia patients who also received more than one transplant, congratulated me, as they had done on the date of my fourth transplant eight years ago today. We did that for each other when reporting our successes via our respective blogs. We also commiserated and even darkly joked when things went wrong.

Now of course they are all gone, and while I think of them often, I do so even more on anniversaries like this one.

Patricia and Dori had the same nasty disease as I had: acute myeloid leukemia, or AML. Ann had an even more toxic kind but did not die from that. Cause of death was a squamous cell cancer that appeared on her tongue and then spread through her body. This is where luck, good and bad, comes in. I remember clearly lying on my couch and talking by phone to Ann and Chris in New Orleans, telling them what it was like to have the same procedure that Ann would be having, a scoop taken out of my tongue. Except a dental surgeon found mine when it was pre-cancerous because of the "good luck" of needing to have 12 teeth removed. (One or two at a time over a period of a couple of years.) The surgery on my tongue hurt like HELL for a long time. But that was that, and now I only go once a year to see the head and neck oncologist.

I especially miss Patricia, because we lived near enough to see each other and become real friends. We had so many similarities, we even called each other doppelgangers. (Three kids, runners, dog-lovers, Dana-Farber, AML...) We paralleled each other until her death in 2014. She had such a terrible time in the end.

I think if I got morose, Patricia would tell me to snap out of it, because that's the sense of humor she had. So I'm going to look back at the date without tears.

PJ, aka Patricia Jempty,
Jan. 23, 1954-June28, 2014

Jan. 31, 2009: New stem cells, signed, sealed, delivered

If you want to read the linked post, you'll see how I waited with anticipation and nervousness for the cells to arrive and how my nurse, Helen, monitored me closely while the stem cells flowed out of an IV bag into my catheter. I usually tell people that the infusion of the stem cells is not a big deal. It wasn't for the first three, but I guess I blocked out what happened near the end of the fourth.

I started shaking vigorously. My heart rate skyrocketed. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who rushed in. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. They put me on oxygen.  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.”

So here's to modern science; and to my donor, Denise; and to Dana-Farber, and to everyone who helped me get through it. Here's to luck.

And here's to PJ, who commented at the end of that blog post:

"Sounds like your body had a wild party last night. My heart rate went up just reading your post.
Here's to the mahvelous miraculous new you."

If you want to learn about how to become a donor to save the life of a person with blood cancer, go to BeTheMatch, formerly called the National Bone Marrow Donor Registry.

The time I went downhill fast and got back up

With Tami & Nancy in 2008

If you are of the opinion "don't go there" by revisiting a terrible experience, then don't read this, but doing it from time to time puts the present in perspective. I went back and found some old posts that contain a lot about crashing blood counts, so here's a warning that it's not a fun read.

But it comes from the perspective of things being good now, nearly eight years after the events chronicled: of George telling me at our tennis lesson yesterday that my balance is better than ever and of me looking at flowers from the garden in a vase on my kitchen table as I write and listening to Maddie snoring after the walk we just took around the lake.

In any case since I was just at Candlewood Lake, I was curious to see what had exactly happened the last time I went. As I found in this post from Nov. 14, 2008, everything was fine and I even went for a little jog. I wrote about how it poured one time but it didn't matter because we were happy just talking, and how the next day it was beautiful and we walked up the hill and talked to the horses. I was still recovering from my third stem cell transplant less than six months before and was not feeling too perky. I wrote that I asked Tami if she felt winded when going up the hill (she said yes) and then I added, "If I feel that I'm more tired than usual, I begin to wonder if I am getting sick in a little or big way."

Emily had to stay in Pittsburgh to work, so it was Tami, Nancy and me. Check out the crazy hair. Coincidentally Ben was in Pittsburgh and stayed with "Auntie Em."

In those days I reported my blood counts all the time. So on Nov. 24 I wrote a post headlined Good news Monday and said that my white count (4.9) and platelets (164) were normal, though my hematocrit (28.4) was slow coming back.

Although looking at it now I see that the white count was at the lowest number for normal. I then tested positive for CMV, a virus that plagued me on and off and against which I'm still on a preventative which I'll stay on as long as I'm on prednisone, which may be for the duration.

Tennis team dinner

I reported having fun at a tennis team dinner shortly afterwards and then wrote about a checkup that occurred approximately six months after that third transplant. I asked my social worker, Mary Lou Hackett, if I could possibly be hit by the same bus twice; I was trying to get encouragement about the fact that my counts had dropped precipitously: white, 1.4; platelets, 27; hematocrit slightly higher at 25.2 than it would have been because I had had a transfusion the week before. She probably knew I was relapsing because couldn't give me an answer. To see how far my numbers were below normal, click here.

On Dec. 25 I wrote that I was devastated to have relapsed again. It was downhill all the way. I was buoyed by all the comments, words of support and encouragement from so many people, telling me I was a fighter, they believed in my tenacity, reminding me to breathe. I have no idea why in 2008 when writing about the vicissitudes of fate I had suicide bombers on my mind, but this is what I said.

I did live to see the day.

One minute the marketplace is full of lively people. The next minute it is devastated, blown up by a suicide bomber. I have been crying a lot, picturing myself at the end of the road. Thinking I won’t see my children finish growing up, won’t see my grandchildren. I guess this is my mind’s way of going through the mourning process; I hope to get to the acceptance phase soon. I wandered over to 6A (my home for the last transplant) from 6C (where I am now). Myra, a wise, funny nurse, who's been doing transplants for ages, knew what had happened. “Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

Everyone's words and Myra's advice helped me get through. And here we are. As my father liked to say, all is well. 🌻🌹🌷🌼

Drink up. (Not coffee or alcohol)

Looking down at the lobby

Today I went to Dana-Farber early to have a checkup with Melissa before my ECP and got one of the nice drivers, Kenny, from Prevalent, the same company that also sent me Igor the psycho Russian driver.

Kenny is a father of two whose main interest is in music production. We have chatted about this in the past. He is the one who keyed me onto the story about Igor/Alex.

This morning he told me that the company had a scheduling problem, namely that he had to pick some people up in Boston at 2 and bring them back to Springfield, and since they obviously would not want to wait to go back until I was finished at 6:45, he was talking to his supervisor to try to figure out what to do.

Igor was the only driver available in Boston. I said no way was I getting in a car with him again. They would either need to farm me out to another company or figure something else out. Kenny said he would drive the first passengers back to Springfield and then return for me.

When I was reviewing my counts with Melissa, I was surprised to see that my hematocrit had taken a big jump to a normal 35, compared to the slightly lower than normal 28.9 from last week's ECP, which is actually normal for patients getting that procedure since you lose some blood.

I thought that was impressive.

But actually, it was the opposite.

It turns out I had polycycthemia, an abnormally high red blood cell count due to increased concentration of blood. This can happen as a result of plasma volume loss after dehydration, excessive sweating, vomiting and diarrhea.

"Are you dehydrated?" she asked.

Come to think of it, I said, I guess I am.

When you play outside tennis as much as I (and the other crazies) do, you probably don't know how much fluid you lose through sweat. I bring water and Gatorade, and we usually have fruit, but I (we) should be finishing it even my thirst is quenched. Often, that doesn't happen.

I noticed in the past couple of days that I wasn't going to the bathroom that much and thought, hmmmm, I must be getting dehydrated, I should fix that. But I have written about this so I should know: It's hard to play catch-up.

Everyone at photopheresis says you need to be well-hydrated for the big needle to go in smoothly and the blood to run freely; I said I would go drink more at lunch, which I did, but you need to start doing this days before, not day of.

So when my nurse at ECP put the needle in, I felt it catch on something. I closed my eyes and felt her moving it around to try to get the blood to flow. She had to take it out. Dehydration had caused my vein to flatten.

A different nurse came over and applied a hot compress and gave me a a talking to about staying hydrated. She used a different vein and got the needle in. The rest was uneventful. I started to read The New York Times on my computer but quickly got sleepy and took a nap. You might think it would be difficult to fall asleep under the bright lights with so much activity going on, but it is easy. They say the procedure puts a lot of people to sleep. It definitely makes the three hours go more quickly.

My mouth is very dry.

First thing tomorrow I am going to start drinking. Water, that is.

Blood tests, biopsies and other fun things

I had two more possible squamous cell cancers removed today in a "scoop biopsy"  – one on the top of my left hand and the other on my left forearm – mirroring the one on my right are from three weeks ago, so that if nothing else I will have symmetrical little scars.

In the "what was I thinking" department, I planned to go home tonight, but I am staying in Newton instead. I forgot how much these things sting for at least the first 24 hours. For some reason the one on my hand is also itchy, so I took an oxycodone and a Benadryl. I definitely expect to sleep well tonight.

The dermatologist also froze several spots on my face, proclaiming that I had gotten the royal treatment.

Earlier in the day I had a checkup with Melissa. I had been a little anxious when a previous test revealed slightly lower numbers. They are still not back to their most recent high,  but Melissa said not to worry, they are all fine. Since I am not trading in money and the only investment is in my comfort level, I will have to let it be.

White count: 9.1 (normal=3.8–9.2)
Hemoglobin: 11.3 (normal=11.9–15.0)
Hematocrit: 32.8 (normal=34.8–43.6)
Platelets: 127 (normal=155-410)

This was going to be my big three-month interval between appointments, but I went back after two anyway with concerns on my mind. We're just going to keep it at two next time because there are so many things to monitor.

Next Monday I have two more appointments with different specialists, so back on the Pike I will go.

Counts are good

I read a very hopeful story yesterday about a young girl with leukemia, near death after chemotherapy had failed to keep her in remission, who received an experimental treatment that gave her a new chance at life.

Last April, when Emma Whitehead was six, doctors at Children's Hospital in Philadelphia gave her a disabled form of the virus that causes AIDS in an attempt to reprogram her immune system. The experiment worked, and seven months later she remains cancer free.

The New York Times ran a beautiful photo of Emma and her mother smiling together. It's always encouraging to read about promising new cancer treatments, and it caught my eye especially because it was about leukemia.

Coincidentally, I read the story while waiting to be called in for my two-month checkup at Dana-Farber. I had driven to Boston that morning through fog and pouring rain, fueled by glazed Munchkins and coffee.

My counts were good – about the same as last time – except that my platelets went down a little, to 86, out of a normal range of 155-410. But they have bounced around in the same vicinity for a long time, and my doctors remain unconcerned.

My hematocrit – 35.7 – was normal for the third time in a row, qualifying me for getting a pint of blood taken out to lower my ferritin. In an odd way, I was looking forward to it. Anything to take even a little less of the nauseating Exjade, which is the main way of lowering ferritin.

Melissa was about to schedule the "blood-letting" but then said I should wait until the next time because the procedure would make me a little anemic, which would not be good right before I go away.

I'm leaving on Sunday.

Yikes!

Upstairs downstairs

Q: Why do wild turkeys cross the road?
A: They are just strolling around Boston, looking for peanut shells, trash and whatever else they can find to eat.

I began to wonder about this Monday when I was driving to my appointment at Dana-Farber and four turkeys crossed in front of me, right in downtown Boston, causing me to stop short in traffic. The first one saw me coming and turned around, but three were oblivious and kept going, so the first one joined them.

Luckily the driver behind me stopped soon enough that he did not rear-end me. The turkeys took their time getting to the other side, and, puzzled at the sighting, I took the next turn to Dana-Farber. This naturally took my mind off the usual check-up anxiety.

I googled "why do turkeys live in downtown Boston?" and sure enough there was a story in Boston.com about turkeys having gotten used to residential and urban living in the past few years. Who knew?

Anyway, I got to Dana-Farber without hitting any turkeys.

After getting my blood drawn, I went to the 11th floor and got my tongue checked by the doctor who had removed a small scoop of it. She gave my mouth a clean bill of health.

I went down to the eighth floor for my appointment with Melissa, who was running late, so it was back to the 11th floor for my flu shot, then back down to the eighth. I was getting used to the elevators.

Everything was good. First of all, I gained seven pounds in a month. If you're just stopping by the blog, I need to say that is a good thing. People are not usually happy about gaining weight, but in my case that was the goal since I had lost about 15 pounds in four months.

My hematocrit was normal (35.6) for the first time in ages, earning me the opportunity, if it stays normal, to have a "blood letting" (sans leaches) next time to lower my ferritin. I'm not sure what the technical term is. I take a nauseating medicine called Exjade every morning, and the level – which is high from all the transfusions I got – has gone down some, but it is still way above normal.

I was happy to see that my platelets had inched up to 95 (normal is 155-410), which is still low but high for me.

In my body's topsy turvy way, my potassium level has been high; many people eat potassium-rich foods and drink potassium-rich beverages so they can get enough potassium. I take another potion to lower it and keep in with normal range. It was a little high, possibly due to too many tomatoes over the summer and fall.

Due to still-elevated though steady liver enzymes, I need to stay on prednisone. It's a low dose, 5 mgs a day, but still, it would be nice to get off.

I stayed over at Diane and David's so I could see my dermatologist, Dr. Lin, in the morning. She said my skin had cleared up well after the PDT (face fry) and suggested we keep ahead of the game and do another one in six months before little scaly things appear again.

Lucky me!

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.

Dana-Farber day

I had a 9-to-5 day today, spent driving to Dana-Farber, having my check-up there and talking to various people.

There was a lot of traffic. Each way, when I had been on the road only about 20 minutes, I was overcome with fatigue and had to pull over and sleep. This despite coffee both ways. I just sleep for about 15 minutes and then I'm good to go. I really don't know why this happens, but at least I caught myself in time to pull over before I got in any trouble.

There was a lot of construction around Dana-Farber, and I sat in traffic for at least another 15 minutes or so. I was afraid that I would miss my 11 a.m. appointment with Mary Lou Hackett, the social worker who I hadn't seen for months. Ambulance sirens were blaring, and people seemed to be leaning on their horns. It was enough to make your blood pressure rise.

I had less than a half hour with Mary Lou, but I always find it comforting to see her. We have been together since the beginning, and she always has a story to illustrate that whatever you are feeling is perfectly normal. She said that at this time of year she thinks often of my mother, whom she calls one of her favorite people. My mother died on Nov. 26, 2006. Naturally, I think of her too.

I got 12 vials of blood drawn around noon and didn't have to wait as long as usual for my appointment. (It was scheduled for 1, and I got in around 1:30.) Because I have been feeling so well, I was pretty confident that my hematocrit would be higher, and it was. After being abouy 26 at my last visit, it was 33.7, almost normal. (Normal is 34.8 to 43.6)

My white count was normal, 7.8 out of a range of 3.8-9.2, but my platelets were still pokey at 65 (normal is 155 to 410) after being in the 90s a couple of visits ago.

Dr. Alyea said this could be because signs point to an increase in my Graft vs. Host Disease. My liver enzymes are still elevated, and I have a higher number of eosiniphils, a type of white blood cell that rises above normal when inflammation is present.

Instead of increasing my prednisone a full dose, I am going to try alternating my current dose, 5 mg., with 10 mg. every other day. He said doing it this way usually heads off side effects. Let's hope.

We chatted briefly, and he asked me how I was feeling. I said I felt good and told him about my ace from last week. We often discuss tennis, and he was happy to hear my news. This is so much better than talking about serious problems.

My friend Dr. Francisco Marty, an infectious disease specialist who always made me smile even when I was sickest, was around in the clinic, and Dr. Alyea said he wanted to say hi to me. Dr. Marty, in addition to being a medical specialist, seems to have a lot of thoughts about hair. "You need a haircut," he told me when my hair grew in scraggly and I hadn't had it cut. He said it with a smile, so I wasn't offended. Today he said, "I like your hair." Bingo! He is also a talented photographer with his own website, on which he said he had recently posted some new close-ups of roses. I checked it out and they were beautiful.

When I met him in the hall just a few minutes after seeing Dr. Alyea, he said, "I heard you had an ace." I guess important news travels quickly.

I had wanted to get back on time for yoga, but it took me too long; I actually got back around 5:45, 15 minutes after the class had already started. I needed to do something. So I quickly changed into my running pants, long-sleeved T-shirt and sweatshirt, throwing my good clothes onto the bed.

It was dark but not too cold. I walked down to the Lower Lake, the one that is paved and well-lit, and started to walk. I didn't really mean to run, but I ended up jogging about a mile and walking another mile.

That reminded me of the old me, the one who, after a long day, often quickly changed and went for a run. It's not exactly the same kind of run, but it was a variety of normal, and it felt good.

Tennis nut cracks

My visit to Dana-Farber Monday was great.

Dr. Alyea came in talking about tennis, so I knew I was OK. He said he was very pleased with my counts and said that my liver and kidney functions were better, and my potassium and sodium were normal. He dropped my prednisone from 10 mgs. a day to 7.5. The numbers:

WBC: 6.0 (normal = 3.8-9.2)

Hematocrit: 28.8, up from 25 three weeks ago (normal=34.8-43.6)

Platelets: 93 (normal=155-410)

When you look at the normal range, except for the white count I obviously have a ways to go. But I am going in the right direction, which is good. My platelets were up 3 from the last visit. Yippee! I'll take whatever I can get. As a bonus, that number of platelets enables me to get my teeth filled. Sigh.

I headed straight home (OK, I stopped at Starbucks), to catch the U.S. Open men's final, which had been rained out the day before. After some trouble finding the right channel, I saw Rafael Nadal beat Novak Djokovic 6-4, 5-7, 6-4, 6-4.

I had been running around for nearly a week, spending several days with Katie and getting to see Ben. Then I was back home, where it was just me and the dog. I stalled. I wasn't happy. I told myself that I don't have to be happy. I can just sit with the feelings and breathe, and over time I'll get used to it.

Or I can take a tennis lesson, which I did yesterday morning with George, sharing the two hours with a woman named Susan. I always get worse after watching the pros. I notice how their feet are always moving, and how thoroughly they follow through. Not kidding myself that I can be like them, I still try to take something away from watching them. Then I start to think about it too much, which of course is counterproductive.

Sue ran all over the court, like I used to do. I am still trying to get from three steps to four. When it was time to pick up balls, she bounced around. I used my racquet as a cane as I bent over.

George said she is a runner whose tennis game came later.

"Sue is a work-in-progress," he said.

"I guess that makes me a stalled work looking for a jump start," I said. "But we're all works-in-progress, aren't we?"

George agreed that he was too.

I know that, but I when my strokes were off yesterday, I was discouraged. I know what to do, but my body just can't do it. (Hey, sometimes we all say that, even in perfect health.)

George and I hit against Sue, and I asked if he thought I was able to take a turn by myself. "Maybe next time," he said.

It reminded me of when I was lying in my hospital bed, unable to walk, and I looked out into the corridor and watched a patient plod up and down. I asked my nurse if she thought I could do that, and she said, "Sometime soon."

I walked again. I can run and play tennis again.

I told Diane I was upset about my tennis game.

"What, you want to be Rafael Nadal?" she asked.

Diane reminded me that a little more than a year ago, I was being wheeled out of the hospital after nearly dying. "This is what you hoped for, to be complaining about your tennis game," she said.

It's so true. I could use some lessons in patience.

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.

Monday clinic report

After having my blood drawn today, I went across the street to visit PJ at Brigham and Women's Hospital, where she is having her second transplant. I met her through her blog, on which she is, with eloquence and humor, telling her story. We discovered that we have some amazing similarities and have, with a group of other friends from the blogosphere, been supporting each other ever since.

It was good to see her and meet her husband and two sons. She seems comfortably situated on 6A, my home-away-from-home for much of this past winter. Her room is next to my old one. I can clearly remember lying in bed staring out at the pod, watching patients walk around and wondering when I could do that again. It's been a long haul since I took my first faltering steps with a walker, got half-way down the pod and had to pause to catch my breath before moving with difficulty to the end of the pod, and then turning around and looking longingly back at my room and my bed, which seemed pretty far away.

Naturally you go back to a place like that with mixed emotions.

I was glad to check in with PJ's nurse today, Christina, who happened to be my nurse on one of my darkest days when they weren't sure I would make it. I appreciated that I was standing up talking to her instead of lying in bed. None of my other regular nurses were there, but I was happy to see other old friends, including nutritionist Paula, who helped find me things to eat when I could barely tolerate anything, and personal care assistant Donna, who buzzed my hair for me when it was falling out in tufts.

After that, I returned to the clinic and met with Melissa and Dr. Alyea. My counts were: platelets, 10 (at least not in single digits); hematocrit, 23; and white, 4.9. This is lower than last week, but they said it was fine. Dr. Alyea lowered my Prograf from .5 mg twice a day to the same dose once a day. He said he hoped that would help my body stop chewing up platelets and red blood cells. Next, I got a bag of platelets and two bags of blood, almost closing the place down..again.

Oh, by the way, Melissa also said not to worry about the two spots on more forehead. They are already fading and were probably a reaction to bug bites, as my rational mind tried to tell me. 

Trying to stay up in a downturn

I expected my counts to be low at today’s visit, but I was unpleasantly surprised at how low they really were. After being great two weeks ago, all of my counts are below normal because of my third bout with CMV and because of the drug Valcyte, which is used to treat the virus but which also suppresses bone marrow production. For more details about the "stupid virus," see last week's post about it.

My platelets were 27, white blood count 1.4 and hematocrit 25.2. The transfusion from last week helped somewhat, but not too much. The CMV results take longer than the rest; after last week’s test, the virus was actually gone. When I get the results of today’s test, which may come in tomorrow, we will hope that it is still negative. If so, I can begin tapering the Valcyte. The question is whether anything can be done to stop this cycle from repeating itself. I am totally stopping my last immune suppressant, Prograf, which should help. We’ll see if they come up with anything else.

I need to return Thursday for blood work, a probable bone marrow biopsy and, if needed, transfusions. As soon as I got home today, I gave myself a shot of Neupogen to boost my white count. I’ll give myself another shot tomorrow and Wednesday.

I’m just about six months out, which is where I was when my counts crashed in April, signaling the graft failure which led to my third transplant (the second if you don’t count my autologous transplant in 2003). Naturally I am jittery about the same thing happening again. But my low counts correlate with the CMV and Valcyte, and Melissa said to try not to worry.

Today I also saw my wonderful social worker, Mary Lou Hackett. Of course without revealing their identity, she often mentions long-term survivors who’ve been there, done that. She has said that in the first year after transplant, many people experience ups and downs with their counts.

Like a little kid, I asked her today if she could tell me the story about the people whose counts go up and down. It’s reassuring to hear repeatedly that I’m not the only one it happens to.

I told her my worries about the six-month mark, and asked her what she thought about my concerns.

“What do you think?” she asked.

“Well,” I said, looking out the window at the busy Boston street. “If a bus hit me on the corner six months ago, it doesn’t mean that another bus will hit me in the same spot today or any other day.”

She smiled.

I smiled. I thought that was a pretty good answer. Now I just have to believe in it.

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.

The long wait was worth it

I always expect to wait in the clinic for a while before my checkup, but today the waiting time was close to a record: two hours. I came, as usual, prepared with today's New York Times, leftover sections from yesterday, the book I am currently reading ("The Story of Edgar Sawtelle") and my little blue notebook, in case I need to jot down a question or a random thought.

I went through the newspaper and was reading the book when I finally got into a room. Sometimes I get caught up in thinking that delay signals bad news for me, and then my heart rate picks up and panic sets in. Today, though, I did a pretty good job of keeping the lid on. Maybe it was because I was so tired. I almost fell asleep in the chair. I did, however, have to resist my impulse to run into the hall, grab anyone with a white coat, and say to them, "Please, just turn on the computer and tell me my counts!"

Today I was scheduled with nurse practitioner Melissa Cochran. Finally, she came in. I knew the delay wasn't her fault; sometimes the whole system just seems to get incredibly backed up. Melissa apologized for the wait and asked me how I was feeling. I said generally pretty good, although I've been having some stomach problems.

She turned on the computer.
Drum roll ...

My white blood count was up to 3.8, in the normal range of 3.8-9.2. I can't remember when my WBC was last in the threes.
Hematocrit was up to 31.1 (normal is 34.8-43.6). Hurray for Aranesp!

Platelets were down a little, from 141 ten days ago to 133 today. (Normal is 155-410.) But 133 sounds good compared to my low of 4 during my last hospital stay.

If the counts are low, I usually toss the printout.
Today, I kept it. After quite a bit of worrying during the past week, I was, naturally, very happy.

Plus, Melissa said I could get a coffee for the drive home. By now it was rush hour in Boston, and I knew that door-to-door the drive would be at least two hours, so I was happy I could get coffee.

For the first time, I walked into a Starbucks and got a coffee.
Now, that felt normal.

On the court, a shadow of my former self

Like my old self. I run out of the house, late as usual, holding a bunch of stuff …tennis clothes, tennis bag, bottle of water, lunch, book and full coffee cup because Ben ran off with all of my travel mugs. The lunch is a boring peanut butter and jelly sandwich. My friend Tami from high school is coming from Connecticut to meet me in Longmeadow for lunch. She will buy a sandwich from a deli; I am still under post-transplant dietary restrictions and am not allowed deli food, which is why I bring my lunch. I have the book in case she’s late. The tennis stuff is because after that, I will head over to Agawam to play doubles with friends from my team, Korby, Deb and Debbie.

On leaving the house, I drop the book, which causes the coffee to spill and splash on the door. I make it to the car and turn around because I forgot my keys. The sun is shining, the sky is blue. I turn the radio up high. It could be any normal day…except that it’s Thursday and I’m not working, which, frankly, doesn’t bother me at all.

Tennis is fun but it’s a little hard. I have adapted to this week's hematocrit of 25 (normal is 34.8 to 43.6), but I obviously don’t have a normal amount of energy. I huff and puff a little. I hold my own and I make a couple of really good shots, but, as my father used to say when recovering from heart surgery in his 80s, I was a shadow of my normal self. (He built his strength up enough so that he played tennis until a year before his death at 87.)

Korby , my partner that day, kept asking if I was OK and if I wanted to stop. Of course I didn’t want to stop. Good friend that she is, she said, “You should stop before you’re tired.” The others, too, kept checking in.

I served one game with so many deuces I lost count. Eventually we prevailed. That wore me out. I started hitting crazy shots, some even going onto the other court.

I wondered if they might be annoyed with me. Then I realized that of course they wouldn’t be. I had shared this concern with a non-tennis friend who said, “They’re just happy to be playing with you.”

I was tired at the end, but it was a good tired, and I was happy to be playing with them, too.