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.

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. 🌻🌹🌷🌼

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.

Medical web searches lead to 'cyberchondria'

Cyberchondria -- leaping to dire conclusions while researching health questions on line -- is attracting increased attention.

Last Monday, Microsoft researchers published results of a study of health-related searches on its search engine and a survey of the company’s employees. The results confirmed that self-diagnosis on the Web leads searchers to conclude the worst.

“The researchers said they had undertaken the study as part of an effort to add features to Microsoft’s search service that could make it more of an adviser and less of a blind information retrieval tool,” The New York Times reported on Nov. 25.

The long-term goal is creating search engines that could detect medical queries and offer advice that did not automatically make searchers fear the worst, according to the story. In the age of too much information, that certainly sounds like a good idea. In the meantime, if you are going to search, a woman interviewed for a USA Today story had a good idea. In addition to checking out her symptoms (in this case anemia) she also searched for "anemia and benign conditions" so that she could have a balance of information.

If you do end up being diagnosed with a serious condition, the Internet can help you research treatment options and find the best doctor to treat you. After everything is in place, you might want to follow the advice of my doctor at the Dana-Farber Cancer Institute: STAY OFF THE INTERNET.

Through writing this blog, I already know more than I’d like to know. For example, when writing about my bouts with CMV, or cytomegalovirus, which affects people whose immune systems are weakened, I looked it up and found that in the worst-case scenarios, it can lead to disease and death. When caught early, however, it produces few if any symptoms, and they test for it early before it gets full blown.

Of course if you are prone to hypochondria, you don’t need the Internet to give yourself the worst diagnosis. Medical school students are known to have “medical schoolitis,” diagnosing themselves with every disease they learn about. Newspaper reporters like myself are also vulnerable. We write a lot of hard luck health stories, some with happy endings, others to benefit a cause. Then we worry that the disease of the day will pounce on us or on our loved ones.

I’ve always been a bit of a hypochondriac. A headache meant a brain tumor, and my sensitive stomach signaled stomach cancer. Then as a reporter I found new things to worry about. Once I wrote about an adorable toddler being treated for leukemia. Her mother said she became worried when her daughter developed small black and blue marks all over her body; these turned out to be a sign of low platelets caused by leukemia.

This was around the same time that Katie was learning to ride a bike. With each tumble, she developed another black and blue mark on her legs. I called the pediatrician. A nurse asked me if the marks were all over her body, and I said no, just on her legs. She said that if it was serious, the marks would be all over her body, but I could bring her in if I was worried. I let it go when I saw that each new mark corresponded to a new fall. By the way, the nurse told me that lots of parents called with the same question about bruises and leukemia.

When it came to my own diagnosis many years later with leukemia, I wasn’t a big Internet user, so I wouldn’t have looked up my symptoms. In any case, there wasn’t much to look up. I don’t think I would have found much if I did a search for “fatigue during a 10-K road race,” which was my only symptom.

I did know enough to feel that something wasn’t right, so I called my doctor the day after the race. He had a cancellation two days later, and when I saw him he did bloodwork “just to be sure.”

Not even two weeks after that, I was in the hospital. I had been diagnosed early enough so that I was otherwise in good health. Bottom line: If you really think something is wrong, call your doctor.

Woudda coudda shoudda

In all my concern over my lowered counts, I didn’t dwell much on the fact that Oct. 15 would have marked one year out of transplant if my graft hadn’t mysteriously failed at six months.

I did, of course, think about it.
It would have been my second new birthday (following my first new birthday, my auto transplant, now my non-birthday, on Sept. 18, 2003).

If I hadn’t backpedaled, I would have learned who my donor is. I would feel the relief of having the experience be one whole year behind me.

Plenty of people are saying woudda coudda shoudda over their stock market purchases. "I would have," "I should have," "I could have" are words that people often apply to troubling events in their lives. Everyone knows it’s a waste of energy. It’s something we as cancer survivors must try especially hard to avoid. Other words are just as problematic, for example, “if only….” And “what if….”

“If only I hadn’t gotten cancer….what if it comes back…” They’re all part of the same non-productive way of thinking.

Emily did have a good “woulda” about my one-year-annversary that wasn’t.

“You would have been getting ready to go back to work,” she pointed out.
So true. I like my job writing for a newspaper, but there are countless benefits to staying home. I’ve spent more time with my kids than I ever would have. I can read the newspaper all morning. I can read books at my leisure, walk with friends, watch the dog swim, enjoy the mid-day sun that I missed in the office, and take a nap without feeling guilty. And now that I’ve discovered blogging, I can send my updates into the blogosphere and get support and feedback from people I know and friends I’ve never met. And I can send out support and reassurance in return.

Quick update: Today was the day to call Melissa for the results of the CMV test and the bone marrow biopsy. I didn’t want to get out of bed. Mary called and I told her I was lying there with the quilt over my head, imagining bad things…that Melissa would say the results were bad, or that she might even say they weren’t in, when in fact they might be in but were so bad that she wanted to tell me in person. Woa.

“Stop making scenarios,” Mary said. “Get up and make some pancakes and some strong coffee.” I told her that my mother used to come wiggle my toes and say, “Get up, get up.”
“Mary,” I said. “Tell me to get up.”

“OK,” she said. “Get up, get up, get up.”

So I did. I added half an Ativan to my morning pills, and when my heart stopped beating fast, I called Melissa.

The CMV was still negative. Only half the bone marrow results were in, and they looked fine. The chimerism and the rest would not be back until Monday. She said to stay on the Valcyte, because if I go off too quickly the CMV might come back.

I think I can deal with that for now. The sun is shining. My friend Barry is coming for a walk. The dog is lying in a patch of sunlight on the dining room rug. Soon she’ll be racing around in the lake. I’m going to see if I can get through the weekend by being a good Scarlett O’Hara.

I’ll think about it tomorrow. (Or the next day or the next day or the next.)

Counts were down and I'm not too happy

I apologize if you are tired of reading about my CMV. I’m getting a little tired of it myself.

Went back to the clinic today to recheck the CMV; the results will be back in a few days. As expected, my counts went down again. They were down so far that, despite being prepared, I was a little shaken up.

My white count was down to 0.7 (normal is 3.8 to 9.2). Not too long ago, I was so proud when I went into the 3’s for the first time in ages. “I’m almost neutropenic!” I said to Dr. Alyea. He explained that low white counts post-chemotherapy – when I was neutropenic in the hospital – are different from when you’re this far out. People walk around with counts like mine and do OK. He did say to restart taking Neupogen shots, or GCSF, to raise my white blood count. I happen to have two boxes in the fridge, left over from the days when my counts crashed six months after my first allo.

My platelets were also down (74), hematocrit was down to 27.3 and hemoglobin was down to 9.6. Actually, I feel fine, and they said I looked fine.

Dr. Alyea said there were two good reasons for the drop: the CMV and the Valcyte used to treat it. Still, he said, he needed to be vigilant, because back in April when my counts took a big dip, graft failure followed. He said not to panic. My latest chimerism, from Oct. 2, was still 90 percent donor – a good place to be.

The plan is to continue the Valcyte and see where the CMV level comes in. If it is still the same, I could switch to one of two antivirals that need to be administered intravenously but which do not lower counts.

A bit of post-traumatic stress kicked in. Low counts bring to mind bad outcomes. My mind immediately went off in this direction: What if I am cured of the leukemia and something else does me in? I know this is a common thought pattern because I’ve seen it on other blogs. I’ve also followed these blogs long enough to see that the complication is taken care of in most cases. I also can think back to a situation where my low counts did not signal anything bad; I was on Valcyte once before for CMV. My counts went down, the CMV went away, I went off the Valcyte and my counts bounced back.

So…I didn’t panic, but I did feel deflated. Big sigh.

When I got home, I quickly put on sweatpants and walked the dog. It was late in the day by then, but still balmy. I bumped into Carol, a good friend from work. We go back 30 years and have been through a lot together. Carol was walking with her niece. They got a caffeinated earful. Carol offered her support and a big hug.

On the way home I passed the fire station and waved to the fire chief, Bill, who was standing in the open bay. He waved back.

A car pulled up alongside me. It was a woman who wanted to know where I had gotten my dog. She said she has a chocolate lab who looks just like mine – small and sleek. She thought they might be from the same litter, but they aren’t. We agreed to introduce them if we bump into each other at the lake.

Life was already gently pulling me along. I came home and gave myself the shot. I watched “Hardball” with Chris Matthews and then, at 8, switched to Comedy Central for last night’s installation of “The Daily Show.” I laughed until my eyes filled with tears.

Playing tennis with CMV on my mind

Yesterday I checked in with Melissa to see if the test for CMV was back, in hopes that it would be gone and I could start tapering the Valcyte, the probable culprit in lowering my counts last week.

The CMV was the same. She said I should come in this week to have my counts tested instead of going onto the two-week plan. So, I go on Thursday.

My mind went in a bad direction. I looked up CMV again (I’m not sure why, because I already had looked it up) and saw that it can cause disease and even death in immune suppressed people. Post-transplant patients and people with AIDS represent the highest risk. CMV can also lead to eye infections, which, if they get out of hand, can lead to blindness. I hope nobody with CMV reads this and gets freaked out, because I assume that most cases, when caught early like mine, lead to nothing but a little diarrhea and inconvenience.

This is where the Internet does not come in handy. If you look up pneumonia, you will learn that it might kill you...but in most cases it probably won't. Look up anything and trace it to its worst-case-scenario, and depending on your mood and vulnerability at that moment, you will either dismiss it or get paranoid.

After I talked to Melissa, darkness fell and the night goblins came out. I almost called my good friend Vytas, who had been one of my nurses at Brigham and Women’s Hospital, and who has fielded many of my questions over the years. I wanted to ask, “Do you think I’ll go blind?” I felt like I would sound crazy, so instead, I finished the conversation in my mind. “Helllooooooo,” said Vytas-in-my-mind. “No, you are not going to go blind.”

Instead, I treated myself to countless Oreos and half an Ativan.

In the light of day, everything seemed better. I had my Tuesday morning tennis lesson with George, who is an incredibly talented teacher and a hoot.

After initially resisting the forehand loop last week, I had looked it up on the Internet, watched a video, read the instructions and became convinced. I did it almost every time. George beamed. “You’ve reprogrammed yourself,” he said. “I’ve put another looper out there.”

Would that we could reprogram some thought patterns so easily.

We then worked on my backhand volley.
“Hold your left hand on your racquet until the last minute,” he said. “If you let it go too soon, it’s like you’ve let go of a child’s hand and you don’t know where he’s going to run off to.”

Keep both hands on until just the right time, he said, “until one hand says to the other, you’re ready to go.”

I love the way he puts things.

Then he said he wanted to show me something new on my backhand groundstroke. (I have a one-hander.)

He came over to my side of the net and demonstrated…a backhand circle! I thought I had put in my dues with the forehand.

George said that if I wanted to advance to the next level, the backhand loop was the way to go. And he said I showed that if I could do the forehand, I could do it on the other side. “Go on the Internet and watch Roger Federer do it," he said.

We tried about a dozen. Some went over, some did not. It felt weird.

“It’s hurting my brain,” I said.

George looked at me quizzically. “Nobody ever said that to me,” he said.

I guess that makes me unique. In any case, I had changed from the CMV channel to the tennis channel.

Counts were down, but my spirit is steady

I had my clinic visit today instead of my usual Monday.

I started the day by meeting nurse practitioner Mary Jane Ott for Reiki at Dana-Farber's Zakim Center for Integrative Therapies, in keeping with the plan that many people have: Try to add a little something nice onto your clinic visit. I’m not exactly sure how Reiki works, but I do know that it makes me sit still and concentrate on my breath. When we're done, I always feel more relaxed.

I expected my counts to be down, and sure enough, they were, because I am still taking four tablets a day of Valcyte to combat the CMV, or (cytomegalovirus), which affects people with weakened immune systems.
White count was down to 1.5 (after I was so happy to get into the 3’s just weeks ago), and platelets were down to 90, the first time in a long time that they dipped below 100. My hematocrit held steady at 30.3.

Dr. Alyea said he was sure it was from the Valcyte. Since I’ve seen the same thing happen when taking this drug before, I wasn't worried.

But I was not happy, either. Lower counts are not anyone's fault, but when I look at the printout, I somehow feel like I failed a test. I would rather be like the proud kid who puts his or her report card on the fridge. Instead, the printout is stuffed in my bag.

Alyea said the virus was responding to the Valcyte, and if I tested negative this week, I could start decreasing. If not, I’ll have to continue, and my counts might even go lower.

He asked me if I was playing tennis, and I said I was taking lessons with our coach, George. We had a short talk about lessons – his golf lessons and my tennis lessons – and both agreed that initially, they can make your game worse, probably because you're thinking too much or trying too hard.

I told him that George didn’t have any pity on me; when I tell him I’m tired, he either advises breathing through my nose because it’s more efficient, or slicing the ball more. “Slicing will get you out of any problem,” is George’s motto.

I thought perhaps that the doctor might disapprove and say that if I was tired, then I should stop. But, he said, “That’s great!”

Once I get going on the tennis topic I sometimes don’t know when to stop. My inner censor told me that there was a waiting room full of patients, and I should stop gabbing. But I was already going, so I also told him that George was making me work hard to forgo my normal forehand in favor of the circle swing, or loop, that is now the preferable motion.

Dr. Alyea wanted to know what a circle swing was. I got up and demonstrated with a full sweep of my arm – a circle – instead of just bringing the racquet back. He looked puzzled and agreed with me that the circle didn't look very efficient.

He ended the visit by telling me to decrease my tacrolimus and sirolimus, adding that if the CMV was gone he or Melissa would call.

As he was walking down the hallway and I headed the other way to the appointment desk, he looked over his shoulder at me and said…drumroll… “I wouldn’t do that circle swing if I were you.”

On the way out, I went to Starbucks for my now-habitual coffee, another post-visit treat. I waited on line next to a fellow masked-and-gloved- person. (By the way, if you’re from New York, you wait ON line; everyone else waits IN line.) I bought a bag of decaf to take home, plus a tall coffee to go. The young masked man asked me what variety. I told him it was espresso.

“I don’t drink Starbucks at home,” he said. “I only get it when I’m out.”

He explained that he used to live in Alaska, where he drank a local brand from the K Bay Café in Homer, Ala. He’s so loyal to the brand, and he likes it so much, that he now orders it by mail.

We left the line and chatted for a few minutes. He is 45 days out of transplant for AML, and he is also being treated by Dr. Alyea. He asked me how far out I am. I’m trying to come up with a quick answer. (“How far out from which transplant?” I want to ask.) Also, I didn't want to even mention the r-word (relapse) in front of this young man who just finished treatment.

So, I said, “I had an auto five years ago and it didn’t stick, so now I’m about 100 days out of my allo.” No need to give him TMI about the graft failure with my first allo and explain that this is my second allo and third transplant overall.

We chatted for a few more minutes about our habit of carefully watching the servers to see if they’ve touched the lid too much, and then wondering if it’s OK to ask for another lid if we’re not happy. Then we wished each other luck and headed back to pick up our cars.

It was nice to be talking to the doctor about tennis swings and to the fellow patient about coffee brands. Just normal things. Nothing life-altering.

Lost and found on the way to the beach

On Sunday, the first day of fall, (and Day+103) I finally got to the beach. I never went last summer, because of my relapse. I didn’t go this summer, because I was still in the early recovery phase after my third transplant.

Since I had a clinic appointment in Boston on Monday, I planned to go to the beach just north of the city with Katryn, a good friend from my Vassar College days. She lives in Portland, Maine; we decided that Plum Island, Mass., (next to Newburyport), was about equidistant for both of us. We’d picnic on the beach and take a walk, and then I would spend the night in Newton, at Diane’s, so I’d only be about half an hour away from Dana-Farber, as opposed to my usual two hours.

One thing I do very well is get lost. Which is, of course, what I did on my way to meet Katryn. In my defense, I have to say that Google Maps sent me via some unmarked streets. When I got off the highway I found myself in Salisbury (Mass.), trying to get directions. I can go inside places now if I wear a mask, but I thought it would be easier to find someone to ask outside. Everyone seemed to be from elsewhere, so I finally went into a convenience store, where a very nice clerk gave me a different set of directions, including, of course, an unmarked road.

Lost again, I pulled up in front of a yard where an older couple stood. When I told them my plight, they said, sympathetically, that it looked like I had been driving around for quite some time. They gave me a new set of directions, but my eyes must have glazed over, because the woman offered to get into her car and drive me to the turn I needed to take. I thanked them profusely, took her up on the offer, and I was on my way. The turn-off to the island was unmarked, so I panicked and thought I was lost again.

I called Katryn, who was already there. “I’m NEVER going to get there,” I said. “Yes, you will,” she said. We stayed on our cell phones until I saw her standing in front of the parking area where we were to meet.

It’s a beautiful beach with a long stretch of shoreline. We walked for a long time, enjoying the breeze and the blue sky and the sun and the boats. We walked with our feet in the cold water, and every now and then a wave snuck up and splashed us.

It was great, and a real adventure for someone like me who for a long time has been nowhere except the hospital and the clinic.

On the drive to Diane’s, I thought about how my little adventure could be a metaphor for times when you're lost. You’re driving along unmarked streets and you feel like you’ll never get anywhere. Then a stranger (I hope I’m not sounding heavy-handed here by possibly even calling her an angel) helps you find your way. And, suddenly, the vista opens up and you arrive at a great spot!

The next day I had my clinic visit. My platelets went up to 148 – almost normal. My WBC was down a little, to 2.7, and my hematocrit was down to 30.9, earning me another shot of Aranesp. I wasn't really concerned about these counts, because they were pretty high for me. And It was not unexpected for my counts to go down, because I am taking Valcyte, an anti-viral which can suppress counts. I'm taking the Valcyte because I tested positive, for the second time, for CMV (cytomegalovirus), which affects people with weakened immune systems.

Before I got the car, I put on my mask and went into the nearby Starbucks to get a coffee for my drive home. It was my second time, and I still got a kick out of it. My counts weren’t normal, but I was doing things that made me feel like a “normal” person.