Tuesday, November 29, 2011

Day after surgery

The hernia repair surgery yesterday went well.

The area is quite painful, so I am back on oxycodone every four hours. I'll probably stay at Diane and David's in Newton through Friday so that Katie can drive me home after class. Then she'll take the bus back to school. Tomorrow I have an appointment with the doctor who did the repair under my eye.

They want you to walk, so yesterday and today I took Diane's arm and went for a walk. It's so balmy here, it was nice to be outside. My legs are a little wobbly, but only mishap was when a fire alarm box jumped out from its spot on a building and hit me on the head as I turned to look at a book Diane had just bought. After a quick examination showed that I was OK, we switched sides so that I'd be away from the buildings.

Back at the house, I had received an e-mail saying the year-end tennis ratings are out. I'd been predicting that as soon as I returned to team tennis, my rating would drop from 3.5 to 3.0. (How's that for confidence?) But since I've won one and lost one, I knew I'd probably stay.

And there it was when I wrote in my USTA number: 3.5.

That made me happy.

Sunday, November 27, 2011

Talking Turkey results, or, just call me Rosie

Me, Ben, and his girlfriend, Meghan, before the race.
I finished the Talking Turkey 6-miler yesterday, but it did not turn out how I expected.

I felt terrible the first mile. I'm still not totally over my cold. I was having trouble breathing through my nose and had to keep reaching for a tissue. I'm sure that made me run even slower than I usually do.

Actually, I thought that I had gotten faster, and I probably have, but not yesterday. After a couple of miles, a gap opened up between me and a large part of the pack. I know I wasn't last, because I heard people talking behind me, but I didn't have anyone to follow. The course around the Ashley Reservoir isn't a circle; you have to make some turns, and normally I don't pay attention because I'm with everyone.

I missed a right turn through the woods and ran straight ahead to one of the reservoir's gates. After a few minutes I knew nothing looked familiar, but I just couldn't figure out where I was. I was living my runner's nightmare, that I am in a race and have lost the crowd and don't know how to reconnect.

I did figure out that I needed to reverse and turn back through the woods, which I did. I got back in with the pack and breathed a sigh of relief, but then I was feeling just so discombobulated that I think I made another mistake. I passed four miles, feeling OK, and then came to an intersection where there were runners coming in from the left. Someone told me to turn right, so I did. Actually, I think I should have been coming along with those runners, so I must have made another wrong turn and skipped part of a mile, because I never saw the marker for 5 miles.

I just kept trotting along. And then a saw a welcome sight. It was Len Brouillette, the track coach at South Hadley High School and a friend who walks his dog at the lake. Len had finished, and, having heard that I was running, backtracked to find me and run me in.

He said, first of all, that I looked good. Second, when I told him what I had done, he said, "People get lost all the time in races." That made me feel better. He ran with me to the turnoff for the chute, and I crossed the finish line in about 1:11. I used to run it in under an hour, but that, of course, was then.

There were still a decent amount of runners behind me. With the section I added and the section I somehow missed, I probably did run about six miles.

I had started with Ben and Meghan, and they were at the finish line waiting for me, along with Katie. I told them what had happened, and then I kept trying to figure it out. What with not feeling that well to begin with and feeling confused, I didn't have that exhilaration I had when I ran this race in 2005, my first after my initial diagnosis and treatment two years earlier.

The kids reminded me to keep it in perspective. Two and a half years ago, I couldn't even walk. So what if I got lost? So what if I was slow? It was still a big accomplishment. And Ben said he hated to point this out, but I am a little older now.

The broken record went on a little longer.

The consensus: Get over it!

Here's another way of looking at it: I did a lot better than the last time I ran six miles, in May, when I fell down and got a stress fracture.

Also, they gave out a really nice shirt this year.

Friday, November 25, 2011

Say what?

I had an interesting day at Brigham and Women's for my pre-op appointment Wednesday.

The scheduler at my doctor's office told me I could get there early for my 12:30 appointment in hopes of beating the Thanksgiving traffic and that they would try to squeeze me in. Uncharacteristically, I did get there early, around 11:30. The person at pre-op, however, wouldn't even let me sign in. She said that due to an emergency, they were about an hour and a half behind.

So I had to wait beside the sign-in sheet until 12:15, at which time I put my name down. The receptionist said that I should then go kill an hour and a half and she would call me on my cell phone when they were ready.

I decided to go up to the sixth floor to see if any of my nurses were around on 6A, where I got my transplant and where I was so sick.

And they were. It was pretty incredible. They remembered my room (12) and much about me. This was almost three years ago. I guess when you're there for 3 1/2 months and you nearly die, you make an impression. We talked for quite a while. One of my favorite nurses told me, "You just made my year." It's great to make someone's year.

Then I went to Au Bon Pain to get lunch. I had just started on a cup of soup when I got a call from the anesthesiologist saying they were ready. I was a little surprised, because it was 15 minutes before my time. "Put a cover on your soup and come right over," he said, sounding annoyed.

In going over my records, the anesthesiologist asked, "Do you know you have a leaky heart valve?"
Picture the look of surprise on my face. I had him repeat it. I asked when that turned up.

"In an echocardiogram in 2009," he said.


He said this condition is relatively common. It is rated mild, moderate and severe, and mine is moderate.

Now, nobody has EVER mentioned this to me.

I told him how active I am and how surprised I was. He told me to go discuss it with my internist, which I am not going to do. I plan to run it by Melissa, my nurse practitioner, sometime next week. Since it never came up, I am not concerned, just curious.

Anyway, I went over my history and my meds with the anesthesiologist and then went over the same exact stuff with a nurse. I got out around 4, chomping at the bit, as they say.

Katie met me there, and we drove home together. The traffic was pretty bad, but at least it was moving.

Everyone came for Thanksgiving, and the feast went off without a hitch. There's always something, so I was a little surprised when preparations were going so well. I kept waiting for the other shoe to drop, but it never did.

I took out my mother's nice silver and special plates. Katie set a beautiful table. We lit the candles. Just as we were raising our glasses in thanks, Diane called. The machine picked up. "Happy Thanksgiving," Diane said. So she became part of the toast too. My parents would have smiled.

Tuesday, November 22, 2011

Tough times emotionally

Despite unseasonably warm weather earlier in the week, today was really November. Overcast, cloudy and gray.

 Kind of like my mood.

I planned to be in the final steps of getting ready for Saturday's Talking Turkey, but due to my cold and a bad cough, I haven't run all week. I did continue to walk the dog and even jogged a few steps to make sure my feet still lifted up, but it didn't quite make the cut. I hope I can still run the race.

This time five years ago marked the final days of my mother's life, a good long one with a very brief period of illness. Today I heard a story of someone who died young in an accident, and it kind of put my loss in perspective. But still, as everyone knows who lost one, it is your mother.

She has been coming to me in my dreams. The other night I dreamt that she and my aunt were lying on a bed intertwined like snakes. That's how close they were in life. My mother was dying, and as the two revolved around each other, my mother's head became visible. She looked just like she did the last time I saw her. "You're so beautiful," I said.

A few nights later, I dreamt that I was back in our apartment in New York. My parents, both very frail, were in the kitchen. My mother was bandaging my father's arms just as she did during the end of his life when his skin, so thin, developed patches that bled. They couldn't go outside, and I needed to go and get them some things.

First I went out to the park for a run. And suddenly I couldn't see where I was going. It was snowing and then raining, with little visibility. I lost my way on the path and went into a dead-end snow tunnel. I realized what I had to do, got out, turned left and found the path. Ah, the proverbial dark wood.

I was running in all the wrong clothes, dress boots and a long skirt. But I finished the loop and ended at the park exit that I usually took when I went back home. I had made it.

Yesterday, I called my cousin Joanne in New York, who is a big help and support in many ways. My mother often visits her as I feel my mother visits me, and sometimes Joanne calls to tell me about it. Joanne said she loved the symbolism of my dream run. Despite all the odds, I had found my way, just as I have done in life.

But, but, but, I said, I left my parents in the apartment.

That's OK, she said. Your parents are OK. And you are too.

Joe is already here, and the other kids are coming tomorrow. Today I bought beautiful flowers for the house, not just the usual assorted mums for the Thanksgiving table but also a special bouquet of small yellow roses that I put on the kitchen table. Buy something to brighten things up, I heard my mother say.

I think it is working. And having everyone here will definitely lighten things up, too.

Saturday, November 19, 2011

A little something extra

I find it kind of embarrassing to say I have a hernia. Maybe because it's an odd word that sounds a little like hemorrhoid. Who knows, I might be the only person to think this.

In any case, that's what I have. (A hernia, not hemorrhoids.) I am having it fixed the Monday after Thanksgiving at Brigham and Women's Hospital in Boston.

On Wednesday, I go to Boston for pre-op instructions and will then probably be stuck in traffic for eight hours on my way back to Western Massachusetts.

I have an umbilical hernia, a fairly common problem and one that can be attributed to pregnancy, obviously a delayed reaction on my part.

Thanks, kids.

It's a day surgery to be followed by some pain and no running, tennis or yoga for at least a month. I should be able to walk the dog. Maddie will be happy.

Just a little something extra to keep life interesting.

Wednesday, November 16, 2011

Running for candy

On Monday when I increased from four to five miles, I felt the difference big-time.

It was probably not only because of the extra mile but also because my route included some hills, as opposed to my usual one-mile flat loop around Mount Holyoke's upper lake. With its soft surface and trees, it's a comfortable, sheltered place to run. Since the storm, it's been fun to walk the dog around that obstacle course of fallen trees and branches, but running there is out of the question for now. I've been going around the smaller lower lake (about 3/4) of a mile, but it's not as woodsy.

Monday's route was out on the roads. I had been doing part of it, but not the whole five miles, stopping at the bottom of the hill that leads to McCray's Farm. But I felt pretty good and decided to go for it. I reached the top of the hill OK and felt it was an accomplishment, literally and figuratively.

Going down the hill was a breeze, but as I ran over more ups and downs, I felt the accumulated effort. On the last part, I didn't want to be there anymore. It was a bit like during childbirth when you change your mind. There's nowhere to go but to the finish. Five miles probably doesn't seem like much to those who run long distances, but it's far enough if you're coming back from being way down.

As I approached our local deli, Tailgate Picnic, I had a thought: I could just stop there, get some peanut m&ms, and enjoy a leisurely quarter-mile walk back home. For some reason, when I get in a bind, chocolate often comes to mind. For example, when I was covering a boring lecture, or if I am at an over-long show or stuck in a dead-end conversation, I start to imagine the moment when I can have some chocolate.

But supposedly increasing your miles and then stopping early to buy m&m's is another matter.

I bypassed temptation and finished the run. Wow, I thought, I just did one of my old five-milers. I was glad that I had done it. I went inside, stretched, drank some water and ate some lunch. Then I drove back to the deli to get my reward.

Sunday, November 13, 2011

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.

Thursday, November 10, 2011

From doctors to Degas

I'm back from Boston after three doctors' appointments, lunch with PJ and a long walk on a beautiful balmy day to see the Degas exhibit at the Museum of Fine Arts. Might as well mix in some fun to balance the hours spent in medical offices.

My check-up was uneventful. Numbers were good, about the same as last time, except for a drop in my platelets from the 83 to 68. Melissa said she was not concerned. My liver function numbers are better, so I can try dropping the prednisone to 5 mg. a day.

Dr. Dana, the specialist at Mass. Eye and Ear, said that my dry eyes may or may not signal the onset of Graft vs. Host of the eye. I was reminded of the time when I wondered if my work at the newspaper was giving me carpal tunnel syndrome. A doctor told me that my symptoms might get worse or they might get better. In other words, who knows?

Dr. Dana said to use Restasis, eye drops that have varying amounts of success in helping dry eyes and hopefully staving off GVHD. Back home, eye doctor #1 had prescribed restasis, but then eye doctor #2 said he didn't like the drug and not to use it. Since doctor #3 is the expert, I'm going to give it a try.

As PJ, who now lives in New York, wrote on her blog, she went to Dana-Farber Tuesday for a second opinion. Since I happened to be in town, we met for lunch and, as she said, compared war stories. We had to laugh that while some people meet up at their favorite bar, restaurant or coffee shop, we got together at our favorite cancer center.

That afternoon I saw the exhibit Degas and the Nude, which shows a different side of the painter from the one many people know through his sculptures of dancers. Most often at museums I don't use the audio guide, but I got one this time and was glad I did. I learned a lot, and instead of having to read the explanations on the wall, I was free to just enjoy and appreciate.

On Wednesday, Dr. Iwamoto, the plastic surgeon, removed the wad of cotton that she had stitched over my graft. I was glad to see it go; it was small, but it had begun to feel like a bowling ball under my eye. She said the graft should take six to eight weeks to be absorbed into the skin. Right now it does not look pretty. She also said to be careful not to rub it, because it could fall off.

This morning as I woke up and stretched, I caught myself rubbing my eyes. Having that thing fall off would not be too much fun. I better be careful.

Sunday, November 6, 2011

More fun in Boston

I am enjoying a brief hiatus at home before returning to Boston tomorrow for three days of appointments.

"Enjoying" might be too strong. After the surgery under my eye on Wednesday I am not allowed to exercise for a week, and so I am a little out of sorts. Still, I am glad to be home.

It is a good thing I have a place to stay in Boston. I hope Diane and Margaret (and their spouses) don't get tired of me.

I have five appointments, and although I couldn't have gotten all of them into one day, I was hoping for two. No such luck. Oh well, I could be "stuck" in a worse place than Boston. Maybe in my free time I'll go to the Museum of Fine Arts or walk (with a tiny bit of jogging) along the Charles River. And of course I can always go read at a Starbucks.

Tomorrow I have my regular check up at Dana-Farber, followed by an appointment with the head and neck surgeon (aka the tongue doctor) to check on my tongue, or should I say the remaining part of my tongue. I'm also going to see my social worker.

On Tuesday I have an appointment at Mass. Eye and Ear to see a specialist in graft vs. host of the eye. Dr. Alyea is sending me to him because he thinks some of my eye problems might involve GVHD. I have heard that this doctor is a big big shot who has absolutely no bedside manner. I am a little worried that he's going to yell at me. (I didn't do it! It's not my fault!)

Finally, on Wednesday, I return to the repair shop to have my stitches taken out and the wad of cotton removed from under my eye. I am definitely looking forward to that visit.

Friday, November 4, 2011

Call me a cockeyed optimist

Or is it negativist?

I'm not sure about this. I guess I'm a little of both, some days optimistic and some days negative.

One thing's for sure, though. I am definitely cockeyed.

I had the Mohs procedure in Boston on Wednesday, and, although it was successful, it was more complicated than I expected. The surgeon took what they call two "passes," meaning he removed a layer of the cancerous tissue (squamous cell) under my eye and then repeated the procedure because he didn't get all of it the first time.

After he had numbed up the area around my eye and removed the tissue, I waited about 45 minutes so he could see if he had gotten all of it. Most people sit in the waiting room, but since I needed to have my head back, I waited in the chair. That really wasn't so bad. I just took a nap.

When he came back in, he said some was still left, so he repeated the process again. After the second round, he said that he had gotten it all. One of the nurses told me it can take up to five passes, so I guess I did pretty well.

Next I went upstairs in the same building to the repair shop, where I got into a room quickly and then proceeded to wait there for an hour and a half.

When the doctor finally came in, she numbed up the area all around my eye with multiple injections, the only part of the procedure that hurt.

She handed me a mirror so I could see the little hole right under my tear duct. Yup, it was a hole alright.

The repair involved taking a skin graft from under my eyebrow and stitching it over the hole.

"You're getting a free eye-lift," the doctor joked as she worked.

Excuse me? On one eye?

Afraid to move my head, I didn't want to talk, but I did have to ask if that would end up looking a little strange.

She said that it wouldn't make that much of a difference, but we could reevaluate it when I healed.

So does insurance pay for an eye lift to balance you out? Just wondering.

She also put a stent in to open up my tear duct, which the surgeon had apparently needed to slice. She finished by sewing a piece of cotton called a ballast over the graft and onto my skin. I go back next week to have the ballast removed.

What with the wad of cotton, the stitches under my eyebrow and the overall swelling, it is not a pretty picture.

Tuesday, November 1, 2011

Chased out by crazy storm

I am writing this from a warm house (my sister's, in Newton), which is more than many people in parts of the Northeast, including South Hadley, can say after the crazy snowstorm that ended in at least 2.3 million people losing power.

As the snow fell and winds gusted Saturday, the trees practically groaned under the weight of accumulation on all the leaves that had not fallen. There were crashes and loud thumps. The microwave light went on and off, on and off. I peered out at all the trees surrounding the house and thought this might be the end of me. Then came the thunder and lightening. I looked it up and learned this is a rare occurrence called thunder snow. It sounds kind of poetic on paper, but in reality it is just plain weird.

The lights went out after I had gotten into bed with a book Saturday. The power has still not come back, which means no heat, no nothing. The house escaped damage, but there is a chunk out of the front of the garage roof and a hole in it from where a tree fell through.

Sunday night I slept at my friend Mary's in Chicopee, one of the communities that did not lose power. Last night I slept at Diane's; I was going to come here anyway because she is taking me for the Mohs surgery on Wednesday.

Joe drove me here, through streets strewn with fallen branches. We got stuck behind a line of cars that we thought were waiting to turn at a light, until we finally realized these people were waiting for gas and we needed to drive around them.

The drive was taking longer than usual and was making me antsy. The occasion seemed to call for car food, i.e. junk food. We stopped at a rest area, where Joe got a Snicker's bar (and kindly gave me a bite) and I got a "sharing size" bag of peanut M&Ms. During the rest of the ride, I popped one after another into my mouth until almost all were gone.

"Joe," I said. "This was meant for two, and I ate almost the whole thing!"

He shot me a glance as if to say, "So?"

If you want to get some sympathy for this kind of remark, you really need to tell it to a woman. (Reference the separate pie charts of men's and women's brains that I've seen, where on the woman's pie there is a slice for "what I ate today" and another for "things I should not have eaten," while the man's pie has no such thing.)

But I digress. The car ride was actually good "bonding time" where we listened to music and talked about different things.

It is more like normal fall here in the eastern part of Massachusetts. Yesterday actually felt kind of warm. As soon as Joe dropped me off, I headed out for a run. It was Halloween, and it felt like the peanut M&Ms had given me super powers.

I hit my stride pretty easily even as I zigzagged around little witches, ghosts, princesses (and one particularly cute tiny ladybug) getting an early start on trick-or-treating.

I ran for about an hour. Near the end, when I had picked up speed, I got a touch of that old feeling, the runner's high. It has stayed with me, a reminder of why I want to run.

As a bonus (or perhaps a bane), Diane bought was too much Halloween candy, and it is sitting in a big bowl for the taking. My only complaint is that she bought Milky Ways instead of Snickers.