'Platelet pandemonium' a distant memory

Health Union illustration of me being unhappy about my hands

Yesterday I was a little grossed out and grumpy about spraying my ficus plant with dish soap to get rid of tiny little pests that might be mealy bugs. Of course I didn't protect the floor, so then I got down on my hands and knees to wipe up the mess. A little tree by now, it is like the Leaning Tower of Pisa. I keep trying to stake it up, with limited success. We've been together a long time. I don't want to give it up, so I just live with it. There must be something in here about living with imperfections.

You can't do this all the time, but it occurred to me, for the sake of perspective, to look at what I was doing 10 years ago. I knew I was still in the hospital, but I couldn't remember what was going on. When I looked it up, I saw that my platelets were so dangerously low that I never would have gotten down on my hands and knees. So being able to do it is a good thing, I guess.

In a post headlined Platelet Pandemonium I wrote,

"Yesterday it turns out that I had dropped to 4 platelets, as in 4,000, and the PA seemed to be kind of worked up about it. She said to be really careful and take it easy, i.e. don't fall. In the meantime she went to call the Red Cross for the platelets, which were nowhere to be found. They started a special search for me and I waited. The nurse had been wrong about platelets being available. I took a walk but basically held my breath all day, except for throwing up my whole lunch onto my tray (sorry...gross, I know). I don't think she was very happy with me. Shortly after that the nurse went home. I got one of the regular staff nurses and was happy about that."

Normal platelet count is 150,000 to 450,000 platelets per microliter of blood. So 4,000 is VERY low.

Certain things are a blur but others are in full detail. I clearly remember that nurse bolting out of there. It made me feel worse than I already felt.

It took a long time for my platelets to recover. I hover around the low edge of normal and am sometimes a little below, but I'm told that is fine. The sign of low platelets would be more than normal bruising or tiny little spots called petechiae, a sign of broken blood vessels. At times I had them all over the place. Now I only get black and blue marks when I hit my left calf with my tennis racquet when following through after a serve.

At last check, my platelets were 161, which is shorthand for 161,000. I may not be normal in other aspects, but I'm normal in platelets.

In other news, I wrote about the attachment we get to longterm caregivers (suicide alert) and about why I'm not happy about my hands.

10 years ago, it was downhill all the way

Callen and Nell

I haven't been running that much, but yesterday I decided to see how I did with some hills, back and forth to Brunelles Marina. The early registration email from the Saint Patrick's Race committee got me thinking.

A man walking down the road was going faster than I was running. If I were to do it again and didn't want to finish last, I would have to try to figure out how to get a little faster. First of course I'd have to see how I felt going a longer distance. The neuropathy in my feet is not a big help.

When I checked at home, I saw that I had gone 3.8 miles. Then I drank coffee and walked Maddie, for a total of the 6.2 miles, the same distance as the race. Doing it broken up with coffee in between, and a dog walk at the end, would be the way to go.

I thought about how it's coming up on the 10th anniversary of my second relapse of acute myeloid leukemia. Back home, I looked it up in my handy reference, my own blog.

In hindsight I know what was happening. Looking back, I can still feel the grip of uncertainty and panic. Here are some excerpts. Maybe you want more, maybe you don't. If you want the whole post, you can click on the link. For reference, the CMV to which I refer is Cytomegalovirus. It is not dangerous to most people, but it is to people with compromised immune systems like I had.

Dec. 12, 2008, Transfusions and rashes and shakes. I survived the long day at the clinic, but it wasn’t easy. My white count was down to .9 (normal is 3.8-9.2) and my hematocrit was down to 21 (normal is 34.8-43.6). I wondered how I had been able to walk the dog nearly two miles the day before. I guess I was running on reserve power. I needed a platelet transfusion in addition to needing blood; I figured if my platelets were that low, I didn’t really need to know the number, because it would only spook me. This being the third downward spiral after a combination of CMV and Valcyte, the drug used to treat it, they switched me from the Valcyte to a different drug, Valtrex, which looks like a horse pill and needs to be taken four times a day. They said this drug should hold down the CMV but not mess up my counts.

Dec. 16, 2008, Spending some uneasy time in limbo. My counts were still low yesterday: WBC was 1, hematocrit was 24, and platelets were down at the “don’t ask, don’t tell level.” I know I could ask, but for some reason I get especially rattled by low platelet levels. I got platelet and blood transfusions, with 50 mg. of Benadryl and a steroid to stave off a platelet reaction, and ended up staying the night at Diane and David’s, this time being rescued by David because Diane was out of town. It also appears that on top of the already low white count, I may have a virus that is further suppressing my counts. I've had an on-and-off low-grade fever, but I feel OK. Yesterday they sent out some blood samples. So the primary suspect is the CMV, the Valcyte and now a new virus, and when the virus goes away my counts should come back.

Dec. 18, 2008, Biopsied, transfused, and still wondering. The counts were not better today, unless you consider the hematocrit, which was 25 after Monday’s transfusion. This was still below normal but high enough to avoid a transfusion. My white count was .6, which is quite low. I knew my platelets were very low, due to the red pinpoint dots (Petechiae) that were making my legs resemble a pointillist painting. As I’ve said, I really have no interest in knowing my numbers when my platelets are extremely low. Today I found out by accident. I went into the infusion room in search of the lunch cart, and I bumped into my nurse from the other day. I told her that my blood counts weren’t back yet, but that I thought my platelets were still low. “Well, they were only 2 the other day, so I’ll just get the order going,” she said. Two? When they were 164 (normal is 155-410) just a few weeks ago? The chimerism from recent blood work, showing the percentage of donor, is still not back. After I got my platelets today, Melissa did a bone marrow biopsy, which will provide a clearer picture.

Dec. 25, 2008: Downhill all the way. It’s been a terrible week. I felt really sick all weekend, and when I called Dr. Alyea Sunday, he said to go to the Brigham and Women’ emergency room in Boston, from where I would get admitted. He also said he was sorry to tell me on the phone, but the pathology report on the bone marrow biopsy report showed that I had relapsed. I had to get to the hospital in a snowstorm, so I didn’t have time to digest it. I still haven’t digested it. 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.

I had my pity party, and then I put on my boxing gloves.

Through luck, an amazing team at the Dana-Farber Cancer Institute, the strong stem cells of my donor, a little stubbornness on my part, absence of the challenging FLT3 mutation, and a lot of help from my friends and family, I did get to see my children grow into wonderful young adults and I did get to see those adorable grandchildren.

It's hard to believe that it's 10 years after those challenging days.

'Visiting' parents' bedroom, chewing over dietary recommendations

I dreamt I was in my parents' bedroom at 1200 Fifth Ave.

My father's bed was made, but you could see he hadn't slept in it. I looked over at his nightstand  and saw the framed black and white photo of his parents. I knew he was gone.

But my mother's bed looked recently occupied. The pale blue coverlet was on top. She hadn't covered it with her bedspread. So I knew she was around. But where? I couldn't find her.

It was part distressing, part comforting, kind of dissonant.

The day before I had replied to a leukemia patient wanting to know what a stem cell transplant was like. I said the infusion of donor cells itself was no big deal. It was just like getting blood and platelets. I didn't get into how sick you get during chemotherapy, but my dream picked it up.

That night I dreamt I didn't feel well. Someone came in and took my temperature. It was 105. Just like it really was on the night that my mother called every hour or so and the nurse assured her that she had wrapped me in cold sheets and I would be fine.

I also dreamt I had such a bad toothache that I needed to find an emergency dentist working in a hospital, but I had no idea how to find that person.

Today I go to the dentist to find out his plan for the chipped tooth.

On Sunday I went to see a nutritionist (yes, she works on Sunday.)

She said I should cut out sugar and dairy and that despite all the good stuff I put into it, I put in so much crap that it depletes my body of the good nutrients.

She said that the inflammation that I have from my graft vs. host disease of the skin would calm down if I cut out the sugar. She is a fan of maple syrup, though.

She said that most likely, sugar gave me cancer.

If you look that up, every other post says yes it does, no it doesn't.

I think my mistake was in telling her that after tennis, I go to Breezy Acres and get coffee cake.

She said I eat too much fruit and not enough vegetables.

I remember going through something like this a long time ago, before cancer, and telling my mother I was going to cut the sugar. She said please don't cut out the fruit, it has so many good things in it.

At Atlantic Beach, we loaded up with fruit from the fruit truck. It's part of my culture.

The nutritionist probably has a point about the coffee cake. I went one whole day without it, and I survived.

But seriously, it is summer and I'm going to keep eating local fruit. I will make an effort to cut back on it though, and when I go to get tomatoes or corn maybe I'll have to go to Dave's, or if I go to Evelyn's, avert my eyes from the coffee cake, but that might not work because the smell there is so wonderful.

Or maybe I'll cut back and get one sliver to have with my afternoon coffee, which I am supposed to cut out but that is not going to happen because then I won't be able to write.

I think she meant to cut it ALL out.

She is not a fan of the yogurt I have been eating in large quantities. I thought I was doing something good. It's very confusing.

I got some almond "milk," which might not be called milk for too long.

I guess I can try for a few weeks to adhere to it as much as possible, but in the back of my head, I hear my father saying, "Everything in moderation." He isn't saying, "Cut out all the fun stuff."

Also, I'm going to Wisconsin and I need to eat cheese.

It's summer, so what about ice cream? Maybe one scoop instead of two?

It can get old to call everything a First World Problem but when I get in a bad mood about this I do have to remind myself that it is a luxury to have this problem.

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. 🌻🌹🌷🌼

There's a first time for everything

For the first time in a some 12 years of going to Dana-Farber, I totally messed up on my appointments, going to Boston today thinking I was seeing two doctors when actually I was seeing none.

I think it started when I wanted to wear a certain pair of earrings that are my recent favorites but reached for a different pair that caught my eye first, thereby messing up my mojo.

Actually, I know how it happened. I had written on today's calendar that I was seeing Laura Goguen, the tongue doctor, at 9:45 a.m. At one point that was true, but they had rescheduled it for December and I had forgotten to cross out today's appointment. Then, for some reason, in my mind I had transported next week's appointment with Melissa to today, and yes, I write things down, but I had just spoken to her about our shared belief that it was today at 1, and it never got corrected.

So when the driver today arrived 15 minutes late, and we got stuck in traffic, I thought I would be late when actually I was early...by about two months.

I realized this when I went up to the 11th floor to head and neck oncology and tried to check in and they told me my appointment was in December. I asked if Dr. Goguen could see me today instead but she was already too booked.

I had better luck getting in to see Melissa. She sent down the orders for my blood work, I went and got it, and we had our appointment. She said I shouldn't be too hard on myself because once in 13 years isn't bad.

A man in the waiting room, who had heard me standing at the check-in window sounding flustered when I explained my mix-up, said not to worry, he had taken multiple wrong turns on the way in, even though he totally knows the way. A little solidarity in confusedness is a good thing.

I asked Melissa why she thought my stomach problems had returned, and she said that although it is not totally clear, it is probably a combination of Graft-vs-Host of the gut and a reactivation of the colitis that I previously had. Meanwhile, it is still new to me to have normal platelets, so when she said they were at 162, it was magic to my ears.

But first, I had done some other odd things, such as forgetting to check in at Lab Services and going directly to the waiting room, a problem which was only remedied when I asked at the desk how much longer I would need to wait and the staffer said (nicely, though), it would help if I checked in. The time was not wasted, however, because I met a nice white Standard poodle service dog, Freddy, and bonded with a woman who was on a new immunotherapy trial for her kidney cancer and was doing very well despite having been told more than a year ago she had three months to live and who told me, "Every day is a gift."

Even odder, when I went to try to get in to see Melissa, I went to the seventh floor instead of the eighth, which is the leukemia floor. But this mistake turned out to be providential because I practically walked right into my friend John Stifler. I knew he was bringing a friend to Dana-Farber for chemotherapy, but I didn't know where they would be.

It turned out to be perfect timing for them to bring me back to Western Massachusetts. So I got to cancel my ride and go back with friends.

This is a change of pace. Instead of writing about crazy drivers, I wrote about crazy me.

Appointments and more appointments

I previously wrote that I was a genius in scheduling three appointments on one day, but it wasn't really so.

A reminder phone call alerted me to the fact that my checkup was Monday (day before yesterday), whereas my dermatology appointment is next Monday, so I will end up going back and forth twice after all.

No damage done. The checkup, followed by the therapeutic phlebotomy, was enough.

My counts are good, with platelets still still a little lower than normal but good enough considering that they were at rock bottom. My liver function is actually a little better. Melissa said we could talk to Dr. Alyea about maybe going down even lower on the prednisone. (I'm pretty low already  at two mgs. a day.)

Dr. Marty always seems to find me in the waiting room. I'm just sitting there reading and I look up and see his smiling face. He came over to Dana-Farber to see me and then had to get back to the hospital. It is always a tonic just to see him.

I took my printout showing the good red count over to the Kraft Blood Donor Center to get the blood removed in the continuing effort to reduce the iron overload in my blood. First thing the phlebotomist wanted to do was stick my finger again to test my blood. To which I said no thanks. She called a supervisor over and the supervisor told her to check her folder on me. Much rustling through produced the paper showing my hemoglobin at 11.7 – well above the 11.3 cut off mark. You really have to advocate for yourself.

I usually plan to spend the night because this procedure makes you anemic and therefore tired. For some (silly) reason I thought I would just head home and didn't even announce my presence in Boston. I got only a couple of miles, realized how tired I was, and called Diane from a CVS parking lot. She didn't answer. I fell asleep right there.

Luckily she was indeed home. I made it there and fell deeply asleep on the couch. By the time I woke up it was too late to drive home, so I stayed for dinner and the night. Diane grilled salmon, which always tastes better than when I make it. I usually overcook it, which is my way of preparing many things.

I asked her how long she cooks it and said, "Don't tell me to cook it until it's done."

David was in the living room, and they said in unison, "Cook it until it's done."

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.

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.

Tongue tale, cont.

I made out well at Dana-Farber yesterday, starting with my appointment with Dr. Goguen, the one that had made me most concerned.

She said the spot on my tongue was much smaller. She said these words which are welcome to any patient with a problem: "I am not impressed." At our previous appointment, she had said she might have to biopsy my tongue, and I was relieved that that didn't happen.

Next it was on to the Kraft Blood Donor Center for therapeutic phlebotomy to reduce the amount of ferritin in my system. I passed the time talking to the phlebotomist, who liked my Spanish leather boots so much that she bent down under my feet to see if she could find the maker's name. I sat next to a woman who has been donating platelets on and off for 15 years. Very admirable.

Then I ate lunch with my friend Wendy, who had driven me to Boston. It was fun having her company, and also important for me to not drive back after getting a pint of blood taken out.

My regular checkup was fine. I have a normal white blood count and hematocrit. Platelets were 127. The normal range is 155-410, but being over 100 is good for me.

My ferritin – the protein that stores iron in your body so it can use it later – is still outrageously high at 4582; normal is 10-170. Ferritin is stored in many types of cells, including liver cells, where an excess amount can cause serious damage.

I am going to have to go back on Exjade, five pills dissolved in water on an empty stomach, and no food for 30 minutes after.

I have been off Exjade for quite a while because it makes me feel so sick. A friend who also had multiple bone marrow transplants, and countless transfusions, said she plowed through with taking eight months of Exjade and now her levels are normal.

I tricked my senses this morning after taking Exjade by making strong coffee and deeply inhaling the smell. I guess that will be my morning routine for a while.

It it's not one thing...Part Two

Yesterday I had a toothache, so I went to the dentist.

He said the tooth in question is decayed beyond repair. This happened quickly due to the same reason that four other teeth needed to be removed: Immune suppression during chemotherapy and from prednisone use now.

I am not a candidate for implants. "How am I going to chew?" I asked my dentist. "You'll be able to chew a steak, as long as it's a good one," he said.

He said it should come out as soon as possible, but the first available slot it Sept. 30.

I was talking to a friend about this and I asked her if we'll still be friends when I am toothless and homeless. OK, so I'm prone to exaggeration.

I am also wondering if a certain friend is slinking down in his chair when he reads this. When he took me the last time, I had taken two Ativan as instructed. Afterwards, my mouth stuffed with cotton, I insisted that we go out for coffee and visit his mother. He got me home only be promising to get me coffee when we got there. It was a moot point, because I conked out.

Removal of the other two teeth was an adventure also. I got those pulled in Boston at Brigham and Women's because my platelets were too low for comfort and I needed to first get a transfusion at Dana-Farber. I always take Benadryl with platelets to head off an allergic reaction. On top of that, I took two Ativan. I was so loopy that my sister practically had to drag me over to the Brigham.

During the extraction, I could barely keep my mouth open. The surgeon said I was a hoot.

Luckily, my platelets are over 100 now.

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.

Four words we love to hear

And they are...

"Your labs are great!"

Which is what Melissa wrote me in an e-mail today after I got a mid-appointment blood test locally Wednesday.

The test was primarily to check on whether my liver is doing better on the slightly higher dose of prednisone (7.5 mg. daily, up from alternating 7.5 and 5). Melissa wrote that yes my enzymes are down, but since they are still not normal, I should stay on the current prednisone dose for now.

You always want to hear that you can decrease the prednisone, but I wasn't expecting much on that front, so although I'm not thrilled at staying on the same dose, at least the enzyme number is heading in the right direction.

I know I am OK, but even when I feel good, I'm always a little on edge while waiting for test results.

I assume I am not alone in this.

We hang on the words, "Your counts are ... (fill in the blank)."

In any case, I was very happy to hear that my platelets are 106, an all-time high since my transplant. At my last appointment a few weeks ago, they were in their 70s.

Only 42 to go to reach the lower end of normal! Normal is 150 to 450, and of course we are talking thousands, as in 150,000 to 450,000.

So to me, 106,000 sounds great.

Sure beats 3,000, which is what I had in the hospital at one point.

Whine time

When I saw Melissa at the clinic on Monday, she said that she would let me know if Dr. Alyea wanted to increase the prednisone.

I didn't hear anything all week, so I thought I had dodged a bullet.

Until yesterday, that is, when I got a voicemail from Melissa saying that they want me to increase to 20 mg. This is still not a huge dose, but it sure is higher than 5.

She said it will probably get my liver to where it's supposed to be and also help my platelets.

I whined to Katie this morning.

"Better prednisone and platelets than no prednisone and no platelets," she said.

Well put.

I walked into yoga last night limping, and Erin asked what the problem was. I told her about the recurrence of the dreaded and dreadful plantar fasciitis.

"This is the worst thing that's ever happened to me," I wailed.

She knows better, and of course I do too. We both cracked up.

She devoted some time to exercises stretching and massaging the sole of the foot and talking about fascia, the layer of fibrous tissue that permeates the body.

I had intended to wear the boot to bed last night. I thought I saw it sticking up from a box of stuff. Then I realized that I was seeing wrist braces, which I had worn when I had twinges of carpal tunnel syndrome from typing so much at work. I looked really great back then when I went to bed with wrist braces and a big black boot.

I remembered lending the boot to a fellow plantar fasciitis sufferer, but I couldn't remember getting it back. I called her and she said she still had it. She brought it over this morning, so tonight I'll put it on.

I hope at least my wrists hold out.

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.