Adding and subtracting

Only at a dinner party where you've known the guests for a long time could you hold up your plate and exclaim, "I'm eating spinach salad!"

This happened last week when I ate spinach for the first time in six years. Not that I was craving spinach. I had to eliminate as many other iron rich foods as possible because of the ferritin overload that was sitting on my liver due all those blood transfusions I had.

I knew all the bad consequences of  high ferritin, which I believe was 7,000 or more (micrograms per liter), compared to a normal level of 11-307. I chipped away at this by getting therapeutic phlebotomies (having a pint of blood removed every couple of months) and dissolving five nauseating Exjade tablets in water most mornings, downing, and waiting half an hour to eat. The tablets bind to iron and remove it from the bloodstream. I took periodic breaks because it was so hard on my stomach. It was a big day a few months ago when I learned that I was "normal" and did not need to renew my prescription.

So, bring on the spinach!

Now, for the subtracting.

I have decreased from three Budesonide tablets a day to two because the glucosteroid has gotten my collagenous colitis under control. In a month, I will check back in with my GI doctor in a month and hopefully continue to taper.

Any day I take fewer pills is a good day.

Finally, I am now going only every other Wednesday to Boston for ECP, or extracorporeal photopheresis, the light treatment that has worked wonders on my skin...and improved my overall movement and tennis game. This is my week off.

I never thought I would say this when I learned in May that I had to do this, but in a (small) way I will miss it. Not the transportation or the big needle in my arm for three hours, but the cheerful, funny nurses and the friendly, always smiling, physician's assistant and doctor.

My nurse practitioner, Melissa, had told me that she sometimes goes over to the Kraft Family Blood Donor for a feel-good visit, and while at first I didn't understand why, now I totally get it.

Victory!

Next up, I was going to write a post saying that when approaching the end of a race or tennis match or some other effort, you need to stay strong and not let up. I was going to give an example of the opposite  – when Donna and I had split sets with our opponents at the Districts in Providence and were ahead in the third 5 to 2, and then let up, and lost one game and then another...until we lost.

In subsequent matches, if one of us said "5-2," it was shorthand for "don't slack off."

I was thinking about this recently when eyeing my stock of Exjade (deferasirox) and thinking, as I have done most mornings for some six years, how much I did not want to take any more. But with my ferritin in the 800's the last time we checked, it was the home stretch, and I pushed myself to take it some more.

Five pills dissolved in water every day. Drink on an empty stomach. Feel queasy. Wait 30 minutes before eating. Even the reps who called from Express Scripts were annoying, repeating the instructions s-l-o-w-l-y.

In case you missed it: Exjade binds to iron and carries it out of the body. The price that Accredo charges – $8,114.90 per 30-day supply – is thankfully covered by my insurance. When I felt like skipping, I thought of the risks of the ferritin overload that had resulted from multiple transfusions.

If you are still with me, the point is this: Yesterday I got a call from the nurse practitioner who was covering for Melissa, who was not in the office. She said the prescription had come up for renewal and Dr. Alyea said I was done! I think my ferritin level was 742, close enough to normal and low enough that the small amount of blood loss during ECP will take care of it. I believe that when I started, it was around 8,000. Normal for women is 11 to 307 (nanograms per milliliter).

I psyched myself up on this homestretch for nothing. I guess psyching myself up most mornings for the past six years was enough.

Meanwhile, I have nearly $10,000 worth of pills left. You hate to waste something so valuable, but I'm afraid they are going to go down the toilet.

Numbers go in the right direction, skin softens up

A few days ago, Melissa emailed me saying she had asked Diane at ECP to check on the kidney function that was elevated last week.

That was a little disquieting since I thought I was done with all that, but then I realized it was most likely due to dehydration. Taken to the extreme, dehydration can even cause kidney failure. I wrote her and asked if that was the reason; she said yes and apologized for not having mentioned that effect of dehydration.

In any case, I worked hard during the week to ameliorate the problem. Also it wasn't as humid so I probably did not lose that much in sweat. Just as George congratulates us on having a "mature shot" in tennis, I gave myself a little recognition for having a mature reaction to the email about my kidney function, in other words, I didn't jump to the conclusion that something dire was wrong.

I never got those results, although I did find out that my hematocrit was back down to around where it should be – 31 – compared to the high of 35, which, although usually normal, suggested dehydration in me because I have been lower due to the ECP.

In a follow-up email, Melissa told me the good news that my ferritin is down to 877. That is very big news because I have been working hard on that by making myself take Exjade most mornings to reduce the level, which I think was as high as 6,000 after all those blood transfusions. (Normal is 12-300 nanograms per milliliter.) I wish I could share that with Patricia.

I drove myself in on Thursday because I had a dermatology appointment at 1 p.m. at another location before my 3 p.m. ECP at Dana-Farber, and although on paper it might have worked out to take the rides, I could see a disaster waiting to happen if I went that route. Dr. Alyea had predicted that my skin would have sprouted nasty things due to my sun exposure over the summer, but in fact Dr. Lin only saw a few things to which she gave a light zap.

She said she could see that the ECP is helping my skin; pressing on my abdomen, she explained to a resident that I had previously had a hardening of the area – scleroderma – and now it is getting softer.

She did, however, tell me to apply chemotherapy cream to a flaky spot on my upper lip. I had a Mohs procedure to remove a squamous cell cancer there, and while it should be gone, the flakiness suggests that perhaps some is left. Hopefully the cream will take care of it so I don't have to get that surgery again.

Then it was on to ECP, where the needle went in fine, as compared to last week, when dehydration had caused my vein to flatten out, thereby requiring two unpleasant sticks.

My nurse on Thursday, Esther, is a pillow fluffer par excellence. She is the best one at getting me as comfortable as can be for the three hours that I am immobilized with my arm outstretched.

When I have the time, as I did on Thursday, I like to go onto the other side and thank the platelet donors and tell them the story of how an anonymous donor saved my life when I was at death's door.

Everyone seemed pleased, except for the nurse who, upon seeing my Metrocard bag, asked if I was a Yankee fan and was disappointed when said no.

Ferritn fight going well

Every time I see this little bottle of Exjade, I have a Pavlovian response: I get queasy and want to back away.

Sometimes I find a reason to skip a day or to put it off until later in the day. For example if I have to leave the house early and don't have the time to wait for 30 minutes to eat after I dissolve the five pills in 7 ounces of water. After chugging it down I get a burst of instant nausea and heartburn. A nice way to start your day.

But then I remind myself why I need to keep taking this very expensive drug (luckily covered by insurance) whose trade name is deferasirox.  I must keep chipping away at my high ferritin level so that my liver can have relief from all that stored iron resulting from so many blood transfusions.

For motivation, I need only look at the list of the problems that according the Iron Disorders Institute are caused by iron overload: Excess iron in vital organs, even in mild cases of iron overload, increases the risk for liver disease (cirrhosis, cancer), heart attack or heart failure, diabetes mellitus, osteoarthritis, osteoporosis, metabolic syndrome, hypothyroidism, hypogonadism, numerous symptoms and in some cases premature death. Iron mismanagement resulting in overload can accelerate such neurodegenerative diseases as Alzheimer’s, early-onset Parkinson’s, Huntington’s, epilepsy and multiple sclerosis.

The results of my latest ferritin test were still pending on my last visit to Dana-Farber. So Melissa emailed them to me this week, and I am happy to report that the level is down to 1601.

This might not seem great considering that normal ferritin range for women is 11 to 307 (nanograms per milliliter). I forget what mine was when I started this process, but I know it was around 6,000 or even 7,000. When it goes below 1,000 I will really see the light at the end of the tunnel.

I wish that I could share this with PJ. It was one of the things that we compared. She was the one who suggested addressing it additionally with therapeutic phlebotomy, something else that I like to put off until I remind myself of the benefits. It has been working out for me to get this done at the Kraft Blood Donor Center at Brigham and Women's when I have another appointment and am staying overnight. But I am overdue and need to schlep over to Baystate to get it done again asap.

PJ and I had our own little support group for these things. You can't expect most people to jump for joy when you tell them your ferritin is down. Only someone experiencing this battle can really get it. But I am sure my health care team can. I look forward to the day when I can toss my leftover pills in the trash. That is like throwing away gold, but I imagine the manufacturer, Novartis, does not want them returned.

Maybe I can do it ceremoniously at Dana-Farber. That would feel good.

A silly day in Springfield, or much ado about nothing

Today I went to Springfield for my bimonthly appointment to have my blood drawn in a continuing effort to decrease the level of ferritin in my blood.

It had seemed like a good idea to do it at Baystate Health rather than tacking it on to an appointment in Boston so as to not have to either drive home fatigued or spend the night in Newton.

It went smoothly last time, but this time there was a glitch. The finger stick showed my hemoglobin to be 11. My orders said it had to be 11.3.

"Good news," the technician said. "You don't have to be drawn today."

It went downhill from there. "But I want it to be drawn. That's why I came here," I said.

I asked if she or someone else could try it on the other hand because there could be a variation in such a small amount of blood. The same thing happened twice at the donor center at Brigham and Women's; on the first stick it was just a little bit low but the second time it was fine.

The nurse supervisor said it was a good stick and they would not do it again. She said my hemoglobin was just too low, and of course, five years or no five years, the word "low" always causes a residual anxiety to kick in.

A resident came in and seconded the decision not to recheck. She agreed to page Melissa to find out if she would give permission, but Melissa didn't call back.

Since Dr. Alyea had said to get a mid-appointment CBC, I thought that while I was in the hospital, I would walk to the reference lab in the other wing and get that done. But when I got there, they said the standing order had expired and so I could not get that done either.

This whole process of not getting anything done took more than two hours.

On the way home I felt overcome with fatigue, as sometimes happens when I am driving even a short distance, so I stopped at a CVS to get something to wake myself up. I had a Cliff bar in one hand and a bag of mini Snickers in the other. I treated myself to the Snickers.

Melissa called later and said she would have given them the OK to draw the blood at 11.

The appointment will need to be rescheduled.

Wondering about soaring drug costs

The problem of soaring drug costs always comes with the question: Does research and development really cost that much?

Many of us are lucky to have insurance that makes our medicine affordable. We don't have to choose between medicine and food or rent.

I don't take as many pills as I did in the early days post-transplant, but I still take a ton: almost 20 a day.

I thought about this when I was scanning the drug summary sent to me by my prescription plan, which thankfully covers most of my costs. Down the list I go. A couple cost under $10, one costs $251.94, and another $665.82.

Then I get to the dreaded Exjade, the five pills daily dissolved in water and chugged on an empty stomach, resulting in 30 minutes of nausea while it does its job of scurrying down to my liver, bonding with the harmful ferritin resulting from iron overload and sending it out of my system.

The true cost: $6,779.68 for a 30-day supply.

I said to myself, "You have got to be kidding me!"

I have been taking it for a long time, but I guess I didn't look at the price.

I dropped one on the floor the other day and threw it out, but I guess I should have thought twice.

When I think of skipping a day, I usually make myself take it by focusing on the good it is doing me. This iron overload can end up making you really sick. My ability to afford it is another reason to appreciate it even more.

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.

Furlough over

My furlough from medical appointments ends on Monday.

Despite the call from stupid voices in my head to shut the process down, I have decided that it is for the betterment of my general health to keep it going. One little vote was all I needed.

Monday I need to leave for Boston bright and early for a 9:45 appointment at Dana-Farber with Dr. Goguen, the doctor who is in charge of my tongue. I have been swishing and spitting like crazy to make the spot go away and avoid a biopsy. I stuck my tongue way out in the mirror and saw that a small white area is still there on the side. Well, I'll have to see what she says.

After that I have an appointment at the Kraft Donor Center for a therapeutic phlebotomy, basically a blood-letting to help lower the outrageous amount of ferritin stored on my liver. The process will make me a little anemic. I hope I reboot for tennis on Wednesday.

Next Wednesday I am scheduled for penicillin allergy testing at Brigham and Women's. I have been putting this off for a while, because who wants to be stuck with needles and wait around to see if you blow up? (Slight exaggeration, sorry.) That allergy has been on my chart since childhood, making it impossible for me to take this good drug, and I am wondering if I still have it or ever did.

Coincidentally, news stories have been focusing on the over-use of broad spectrum antibiotics and the probability that many people who think they are penicillin-allergic probably aren't.

 I'm staying overnight Wednesday (missing tennis!) and then going to have a piece of my lip cut off on Thursday. (Sorry, another exaggeration. It will be a small piece.)

Sounds like fun, doesn't it?

Testing, testing

I like to group my appointments in Boston in clusters so that I can minimize driving back and forth, but when it comes down to it, it can amount to a tiring day or two.

I have one appointment on Wednesday and four on Thursday, like so:

On Wednesday I go to Mass. Eye and Ear to see the specialist who has been watching out for Graft vs. Host of the eye. When I started seeing him, my eyes felt scratchy, but with twice daily drops of Restatis, they feel fine now, so I think I'm OK. Sometime that day I hope to see Katie and check out her new digs, which I haven't seen yet.

Thursday is the busy day. I start out in nuclear medicine with a  two-hour "gastric emptying and motility scan" to try to find out why I am still throwing up. I'm not sure what they do, but I have the impression I might come out glowing.

I thought I was done with throwing up, but unfortunately it has come back at the most inappropriate times. Yesterday I went to a tennis clinic, ran into the bathroom to throw up, and then returned and finished the clinic. Melissa said the endoscopy ruled out anything serious, and this could be something that can be fixed with a pill. Also, she said that after transplant this sometimes happens to people like me who immune systems have been manipulated.

I will have to tell Dr. Alyea, a fellow tennis player, that this is harming my tennis game. I play tentatively because I am afraid I might jar my insides. I have even been demoted from the more competitive Friday 9 a.m. tennis round robin to the easier 10:30 one. In the overall scheme of things, this is no big deal, but as a competitive person, it bothers me. My father would understand. I have a match coming up on Sunday and hope to find a solution before that.

Next up on Thursday is my check-up with Melissa, followed by "therapeutic phlebotomy" in the blood donor center. The plan is to take out some blood to lower the amount of ferritin – stored iron – in my liver, a substitute for taking the nauseating Exjade, which adds to my throw-up problems. The blood will be donated to the trash.

After that I go to another location to see my dermatologist, who has scheduled another PDT, or photo-dynamic therapy, to burn the top layer of skin off my face in order to get rid of the little pre-cancerous spots that keep popping up. This is a fun procedure where they put a chemical on your face, wrap you up like a mummy and have you sit there for an hour before putting you under a burning light.

On Saturday I will go to Meghan's wedding shower looking like a lobster. If anyone asks, I can tell them I took a quick trip to Puerto Rico.

Adventures in Boston

I am not talking about the kinds of adventures I had in Europe, but rather about going to Dana-Farber yesterday and to Brigham and Women's hospital today.

There is nothing seriously wrong with me. It's just that I have been haunted by the throwing up sickness for about a week. I called Melissa and she said it did not sound like flu because I have no other symptoms. But I could feel that I was getting dehydrated, and she said to go see her, have some blood work done and get some fluids.

Ativan helps, but I couldn't take it while driving. Joe had an important meeting or he would have taken me. Plus, he knows what it's like for me to throw up in his car...into a plastic bag with a hole in the bottom, no less. I wouldn't have asked anyone else, so I set out yesterday with my plastic bag and some saltines.

I made it in OK and was relieved to see that my labs are fine.

After getting that out of the way, I told Melissa that my reason for coming was really to show her my new Spanish boots. She said that she had noticed them right away, so I was very gratified...although still nauseous.

First in the line of suspects is the Exjade. I didn't take it during my trip and felt just fine. As soon as I took it at home, up it came. I took a break for a couple of days, downed the five pills dissolved in water again, and got sick again. She said to just stop taking it. Free at last!

Since my hematocrit continues to be normal, on my next visit I will schedule a "therapeutic phlebotomy" appointment as another way to get rid of the excess ferritin that accumulated in my liver after multiple blood transfusions.

Dr. Alyea came over while I was in the infusion room and asked if I had watched any of the Australian Open. When he talks tennis I know that I am not making medical history. He was accompanied by another doctor and introduced me as an excellent tennis player. I told him that wouldn't have described me during the past week, and he said we'd get my insides straightened out so I can get back on my game.

He said I should take a booster of increased prednisone for about five days because when you're on a low dose like mine – 5 mgs. a day – your body can forget to produce enough on its own (or something like that) and a booster would help me feel better.

Meanwhile, on to the award for the most annoying nurse of the day:

When she was reviewing my medications before the endoscopy today, she asked why I take the drug Kayexalate. I said I take it because my potassium was high, but with a once-a-week dose it is fine.

"Are you in kidney failure?" she asked. "That's what high potassium means," she said, or something like that.

I told her that I was in kidney failure three-and-a-half years ago but that I am fine now.

She eyed me suspiciously, as though I had no clue whether I was in kidney failure or not.

After the procedure when she was removing my IV, she started in on me again.

"Have you ever seen a nephrologist?" she asked. Since I happen to have seen a nephrologist (a doctor who specializes in kidney care) I knew what that meant, although when I first heard I was seeing one of those, I thought they said I was seeing a necrologist in preparation for my death.

I repeated that my kidneys are FINE.

With that she finished up with my discharge instructions. And wearing the Massachusetts Academy of Ballet sweatpants that I had put on earlier in the morning, I pirouetted out of the hospital.

Laments of a pill-popper

One down, 21 to go.

When I learned that my insurance no longer covers magnesium, I thought it was a good time to ask Melissa if I still needed to take it. She said I could stop.

My 21 pills does not include the once-weekly solution of Kayexalate, the grainy stuff I dissolve in water to keep my once-high potassium within normal limits. It's not as nauseating as the Exjade I take to lower my ferritin, but it's pretty gross.

Organizing my meds for my trip to Spain, and making sure I have enough plus extras, is a bit of a task.

If I read all the side effects of all my pills, I would probably freak out.

I take several drugs as preventatives because the prednisone inhibits my immune system.

When I saw the infectious disease specialist Dr. Marty on Monday, I asked him, "When can I stop taking the Valtrex (an anti-viral)"?

Answer: "When you stop taking prednisone."

 I already knew what he would say because I have asked before, yet I couldn't help but ask again. Dr. Marty just smiled.

I suppose I would get the same answer to the question, "When can I stop taking the Bactrim (an anti-bacterial used to prevent pneumonia)"?

And "When will little things stop popping up on my hands and face (and tongue) that sometimes turn into skin cancers?"

OK, so, the big question: "When can I stop taking prednisone?"

Answer: When my liver function returns to normal.

Melissa said on Monday that although my numbers were a little lower (a good direction in this instance), they were not low enough to change my prednisone dose.

It's only five mg. a day, down from a high of 20 when I was all puffed up, but still, you can see the effect it has on everything else, including weakening the muscles in my legs.

I shouldn't complain. I am alive and well and going to Spain on Sunday, toting my pills minus one.

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!

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.

Back to Exjade (sigh)

My daily dose of Exjade takes my mind totally off my worries, in a not very positive way.

I took it today after a break of several months. You dissolve five pills in water, drink it on an empty stomach, and wait 30 minutes to eat. Normally if you take a bitter pill, you can pop something in your mouth to take the taste away. But with Exjade, you are left feeling like you are going to vomit while knowing you won't get the relief of doing so. You can just mutter to yourself, distract yourself, clean the kitchen, tap your foot, complain to anyone who is around, whatever, until your time is up.

This is nothing compared to the nausea after chemotherapy, but still, it's not a great way to start the day.

Exjade decreases your level of ferritin, a protein that stores iron in your body. People like me who have had multiple blood transfusions end up with excess ferritin; the consequences can be really really bad, including such things as cirrhosis of the liver and increased risk of liver cancer, heart failure and abnormal rhythms, and decreased insulin leading to diabetes.

A normal ferritin range for women is 12-150 nanograms per milliter. After I finished getting transfusions, my level was about 10,000. Due to blood draws before check-ups and a period of Exjade use, my level is down to about 7,000. Quite a ways to go.

One means of treatment is a good old-fashioned blood-letting, minus the leaches. Patients undergo "therapeutic phlebotomy" during which a prescribed amount of blood is removed, usually a couple of times a week.

My doctors favor the use of Exjade, which binds to iron and removes it from the bloodstream. It takes months and months to work.

When Melissa told me at my check-up last Monday that it was time to restart, I took the bottle out of the cabinet and placed it on my counter. It took days for me to actually see it, meaning I had selective vision that made me forget until after I had already eaten. Then the day passed, and before I knew it, I had procrastinated yet another day.

Today I decided I meant business, and after re-reading about the potentially devastating effects of high ferritin, I am determined to keep up with it. Even if it means starting my day with a miserable half-hour.

Exjade and other excitement

Inspired by PJ's post that seven months of Exjade had finally lowered her ferritin levels to normal, I asked Melissa at my last appointment if I should restart.

The stuff had upset my stomach, and they had given me quite a long break, but she said yes, I should restart. I placed the bottle on the counter and eyed it for a couple of days, and earlier this week I decided to give it a try. You dissolve five tablets in water, chug it on an empty stomach, and wait 30 minutes to eat.

It doesn't taste as bad as Kayexalate, the powder I dissolve to lower my potassium level. That stuff has the grainy consistency of sand mixed in water. But it doesn't make me queasy the way Exjade does.

Still, as PJ and I discussed, it's something I can do for my liver, where ferritin is stored. I can't do anything about the GVHD in my liver (except continue taking my prednisone) but I do have control over this.

The other day after I drank my first glass of Exjade, I immediately felt like I was going to throw up, and I lay on the couch talking to PJ until I felt better.

The same day, like a mad dog or an Englishman, I played two sets of tennis under the (hot hot hot) midday sun. I didn't plan it; I am playing with a group of women who play from 11 to 12:30, and I didn't want to bag out. It was actually fine for most of the time, except near the end we were all tired hitting terrible shots and confessed to thinking the same thing: "Can we stop now?"

We ate some watermelon, drank a lot of water and went on our way. There was no long-lasting effect.

Respectful of the heat wave, I haven't tried running. I even skipped a dog walk one day. Yesterday, however, I did walk Maddie in the morning, around 9:30. I thought it was early enough, but I came home dripping with sweat and not feeling well.

This morning it took a while for the sun to come out, so under cover of clouds, I took her again around the same time. It was much better, so I tried jogging a short distance. She's mostly good about it, but it's hard to get far with her on the leash, what with sniffing and needing to say hello to people.

I don't let her to go over to everyone, but she seemed to really want to stop to be petted by a nice older woman who had just walked. She said she lives at a nearby retirement village and goes once around each lake on most days.

She was very worried about the fact that there are lilies on the lower lake, a sign, she said, that there is something wrong with the water. (She was going to ask somebody official about this.)

Plus, although the nasty goose is still there, she said the ducks have moved to the upper lake. I can't say I have noticed, but when I walk there I'm not looking that closely for runaway ducks.

I kind of lost track when she was telling me a story about watching the mother feed the babies, but still, I enjoyed our 10 minutes together. You don't have these little conversations if you are dogless and concentrating on running.

Good tennis, good counts

Ben and I enjoyed our second annual trip to the Hall of Fame Tennis Championships in Newport, R.I., Sunday, watching 6'9" John Isner defeat 5'6" Olivier Rochus 6-3, 7-6 (6) on Newport's grass courts.

The setting is so intimate that, in addition to seeing the players up close and personal, you get to keep an eye on all the other action, such as the tiny ball boy who seemed to put a big effort into jumping to give Isner a towel.

Isner has one of the fastest serves in tennis (140 mph), and you could practically hear it whiz through the air. On occasion, his serve did something wacky and still stayed in, and he turned to give our section a funny smile, which earned a ripple of laughter.

Rochus, who is from Belgium, is the shortest player on the tour; Isner, an American, is the second tallest (6'10" Ivo Karlovic of Croatia is the tallest). When we are tossing our trivia around, Ben and I will now be able to say that the match we saw had the greatest height differential in an ATP World Tour final. (Yeah, I'm sure this will come up a lot).

The day also included lunch at a restaurant with a view of boats on the water and a drive into Newport with spectacular views of Narragansett Bay. Also, of course, it was a great to spend the time with Ben.

So that was Sunday.

Yesterday, Katie drove with me to Boston for my appointments at Dana-Farber. (As many parents know, travel time is a great time to catch up with a child, so I enjoyed the ride with her. Next time I'll get Joe.)

Everything went well.

I spent a lot of time dozing in chairs while waiting to be seen; the new building was supposed to improve wait times, but I guess they're not there yet. Anyway...

My counts were good, with the caveat, when considering the platelets, that they're OK for me:

WBC: 9  (normal=3.8-9.2)
Hemoglobin: 11  (normal=11.9-15.0)
Hematocrit: 31.6  (normal=34.8-43.6)
Platelets: 76  (normal=155-410)

The platelets are about the same as at my last visit, six weeks ago. I asked Melissa why they weren't going up; she said they are not concerned and that there could be several (benign) influencing factors.

When glancing over the counts back home, I did almost fall off my chair when I looked at the ferritin level: 6,766, very high when considering that normal range is 10-170.

I knew that from all my transfusions my level of ferritin – the protein that stores iron in the body – was high, but frankly, I had never asked how high. I had been taking daily doses of Exjade, a drug that decreases ferritin levels, but I took a break while dealing with other matters. (I was happy to stop because it's a pain to take. You have to dissolve five pills in water, chug the stuff down and then wait half an hour to eat.)

Melissa said my level is actually lower now; it was around 10,000 at one point. But she said it's as good a time as any to restart. So here I go.

I also met with Dr. Laura Goguen, the surgeon who operated on my tongue. She said it is healing very nicely. She also said my continuing discomfort makes sense due to the number of nerve endings on the tongue, but there's nothing much to do about it if I don't want to pop Tylenol all day. At least at this point it is more background noise than sharp pain the way it was in the beginning.

After the long day in the car and at the clinic, I went for a run when I got home. It was still pretty hot and humid, but it felt good to move. I went about 2 1/2 miles, which included twice around the lake plus there and back. Dripping sweat, I came home and walked Maddie probably another half-mile.

You don't normally think about it when your feet don't hurt, but I am still so close to the experience of them killing me that I appreciate the absence of pain.

I think I will maintain the 2 1/2 miles for a while and then add another half when I'm confident that all systems are in order.