Spot is gone; pain and itching are on

Post-surgical fashion statement

Today I am focusing my investigative journalism efforts on what to do if your stitches are itchy.

The fact that the itchiness is a sign of healing does not make it easier to stand. On Wednesday and Thursday after my Mohs surgery, pain was my biggest problem. Now I have less pain although still some at the area on my ankle where the surgeon removed the squamous cell cancer and put on a skin graft to fill the hole in. But the area on my stomach where they took the skin for the graft is itching like CRAZY. Now I understand why they put an ice pack in with the materials needed to change the dressing. The ice pack helps somewhat. I took some Benadryl last night and might take some more.

The ice pack fit into my sweatshirt pocket. I wore it in there for a while because it is right over the spot. Then it lost its cold and I put it in the freezer to see if it would reactivate, but I'm not sure it will work. Meanwhile I have taken a larger freezer pack and tied it around my waist with my scarf. It is hard to concentrate on anything else.

The fashion statement might equal the one I made when wearing one of David's Teva sandals home because my boot didn't fit over the bandage on my ankle. Diane lent me a pair of socks because my feet were cold in the ones I had brought and also because it was hard to fit mine over the bandage. Joe came home to have pizza with me last night, make dinner tonight and help take care of Maddie. It takes a village.

When the nurse at the Mohs center at Faulkner Hospital took my blood pressure on Wednesday, it was 170-something over 90-something. She said it might be a good idea for me to take something. I agreed it was as good a time as any for me to take one of the Ativan I had brought. So while they were getting the room ready, that is what I did.

I have had at least 10 of these surgeries and never got so anxious. It was the thing about the larger size and the graft.

It took a while for them to draw their shapes on me: one on the ankle, one on my stomach, and one on my left hand. Dr. Schmults, who is director of the Mohs Center and who is really nice, said the one on my left hand is too small to treat. She recommended that I treat that and the backs of both of my hands with Effudex, a chemotherapy cream, saying the only way for it to work is to wrap my hands in Saran wrap after I put the cream on, every night for three weeks.

Since I have mentioned this frequently lately, I probably should repeat what Mohs surgery is all about. According to the definition on the Faulkner Hospital website: Mohs surgery, a form of skin cancer removal in which the borders are examined by the surgeon microscopically while the patient waits, boasts a remarkable 99% cure rate for most basal and squamous cell skin cancers as well as a high cure rate for other rare forms of skin cancer.  

A doctor, Frederick Mohs, developed it in the 1930s. If the margins are not clear upon first examination, they take a little more, examine again, and so on until it is all gone. I asked once and learned that sometimes it can take quite a few times to get it all. Only once did I need a second pass. This one came off, as did all but one, on the first try.

During the prep work, I talked to one of the residents. He was impressed by my four bone marrow transplants. They always ask, four? We talked about it some more while he was outlining the spot for the graft. Dr. Schmults suggested a little change in the shape. I had an odd feeling of being the material for a coloring project. I asked if he could still concentrate while I talked, and he said yes, he could. Classical music filtered in while they worked. My appointment was at 1 and I was done at about 5. Some of this was waiting, some was drawing on me, some was getting numbed up with a lot of needles, and some was the actual procedure.

Diane picked me up. I had a nice dinner with her and David and enjoyed what Diane knew would be the best medicine for me, a rich piece of chocolate cake.

On my drive in, I had posted on Facebook about feeling anxious. I appreciated the support that people gave me. As we all know, FB has its downsides, but it is great when you need a virtual helping hand. It was also helpful when, at 1:38 a.m., I wrote that the Tylenol and codeine that Dr. Schmults had prescribed wasn't working. The pain was bringing tears to my eyes. I needed to take an oxycodone, but I didn't want to wake my sister to get something for me to eat and I didn't know if the clementine and potato chips I had in my room were adequate. Somebody is always up. My friend Nan Imbesi replied that my snack should be substantial enough. So I had my snack and my medicine and drifted back to sleep.

I haven't complained about my drivers recently. That's because I have had some good luck lately. I had the same nice driver in and back. When I mentioned to him, as I have to some others, that many of the other drivers have been, um, less than polite, he said he had heard a lot of complaints. We agreed that it doesn't make too much sense because it doesn't take much to be nice, especially when you are driving people to medical appointments.

I go back Wednesday to get the stitches removed. That will be a relief.

Confessions of a prednisone popper

You wouldn't think I would say this, because I'm always writing about being happy when my prednisone dosage is reduced.

Well I am like a kid with a box of candy. Gimme more, more, more.

Melissa had said to increase my dosage to 10 mgs. from 4, which I did over the weekend, with no relief from pain and itching. When I talked to her this morning, I asked if it was possible to go up to 40 and then do a taper. She said it was a good idea.

So I delved into my supply of 10's and popped three more in addition to the one I had already taken.

I can tell that this morning's oxycodone has worn off, because my legs hurt again. I am going to run (I mean drive) to the store to get some more Benadryl. Maddie is scratching too, so I gave her an allergy pill prescribed by the vet. We are an itchy couple.

I am scheduled to tutor tomorrow, but I think I will switch to Friday. I have an appointment with an endodontist tomorrow to hopefully find out the reason for the mystery pain in my tooth. After that I have physical therapy. Unless the higher prednisone dose works miraculously overnight, I don't think I could make it all day without an oxycodone if I did the tutoring.

If you see a chipmunk walking down the street, it might be me.

Percocet chronicles, tongue update

As I sit here at the kitchen table, I just fell asleep with a bite of coffee cake in my mouth and my fork in my hand. It's because I took 10 mg. of percocet this morning; without it, my tongue hurts so much that I can't eat or even hardly think. It makes me loopy, so I hope this makes sense.

I had to choose between lying down and forging ahead with my plan to write. I made more coffee and decided to write.

I didn't want to take percocet near bed-time last night because the other night I had hallucinations that large objects were coming at me from all directions. I even thought that large objects were filling my room and crowding me on the bed.

I tried two Tylenol alone at bed the other night, but that didn't take the edge off the pain, and I couldn't sleep that way either. Last night I took 10 mg. of percocet a couple of hours before bed and followed with half an Ativan, hoping it would undercut the weirdness of the percocet. It worked. Oh, and I also took a Benadryl to try to stop the itching from my rash. More on the rash in a minute. (Bet you can't wait!) Anyway, I got pretty zonked out.

On Monday, Joe drove me to Dana-Farber so I could see Dr. Goguen, who did my tongue surgery, and so I could get bloodwork and check in with Melissa.

Dr. Goguen said my tongue looks the way it should and said the biopsy report was good. She had removed more than she had expected because of a large area with severe dysplasia. She got clean margins but left a little spot of mild dysplasia in order to avoid digging deeper. Apparently mild dysplasia is unlikely to do any harm.

The pain could persist for a couple of weeks. I guess the tongue is a particularly sensitive area.

I had gotten bloodwork before that appointment, so when I went down to see Melissa, she had my counts. They were fine for me: platelets, 74; white blood count, 9.6;  hemoglobin, 10.2, and hematocrit, 29.8. I did wonder why my hematocrit (and hemoglobin) had dropped; the last few times it was in the low 30s and close to normal, which is 34.8-43.6. (For hemoglobin normal is 11.9-15.0.)

She said it really wasn't a significant drop, but she would double-check with Dr. Alyea if I wanted. My liver is stable, but she said it wasn't a good time to lower the prednisone. She promised to check with Dr. Alyea on that also.

So, back to the rash. My torso and face have an interesting collection of spots and blotches; discreet red spots on my face, the splotches of red on my arms from the prednisone, now joined by smaller dots; a genuine rash on my stomach and something around my ankles. Definitely not beauty-pageant material, although possibly interesting to a pointillist exploring use of different kinds of dots.

When I first noticed the new tiny spots a couple of days ago, I panicked and thought they were petechiae, a possible sign of low platelets. I thought I needed a transfusion. Petechiae are a trigger for me, a sign of all things going downhill. My mind did its crazy doom and gloom thing.

I called Dr. Alyea and he said it wouldn't hurt to get a blood test and meet with Melissa. (We talked on Sunday, the day before my appointment with Dr. Goguen.) I asked if we should plan in a possible transfusion, and he said he doubted that would be needed.

Then we talked about the Federer-Djokovic match at the French Open, which took my mind off everything as I watched it on the couch Friday. Federer won the semi-final 7-6, 6-3, 3-6, 7-6, but lost in the finals Sunday to Rafael Nadal, 7-5, 7-6, 5-7, 6-1. I watched that one too.

The more I studied my dots, the more I realized that they were all part of a rash. I was delighted when I discovered that they itched (not a quality of petechiae). Now the itching is getting old.

Dr. Goguen took me off the antibiotic, clindamycin, although it does not usually cause rashes. It might be the percocet, but I'd rather itch than ache. It will probably end up being one of those "rashes with unknown origin." As for my face, which has a different kind of larger red dot that does not itch, I will probably schlepp back into Boston to see my dermatologist, Dr. Linn.

Well, I have to go now and take more percocet. Maybe a Benadryl is in order too.

Testing, testing

I was sitting here falling asleep last night while the second of two bags of blood finished. I thought I’d write an update, but I couldn’t concentrate. Today I’m trying again, slogging through a mess of typos of my own doing. My fingers and my mind seem to be suffering from a disconnect. I think it’s the meds: see below.

I’d rather be in the city that never sleeps; here in the hospital that never sleeps, I had 10 vials of blood drawn at 3 a.m. yesterday. These are for pre-transplant testing for insurance purposes. They make you jump through hoops, probably to prove you are strong enough to get through transplant. I also had an echo-cardiagram and, once my pneumonia is under control, will have to pass a series of pulmomary tests.

The verdict on the pneumonia is that it is aspergillus. So I am back on Voriconozle, my old standby. The fevers are coming down, so that’s a good sign the “Vori” is working, although once I start coughing it’s hard to stop, and my ribs are really sore. If everything continues to stabilize, I might go home early next week while we wait for a donor.

I had mentioned that I had a headache, and one of the doctors suggested an MRI “to see if your disease has spread to your brain.” Couldn’t he have found a better way to say it, such as, “We just want to make sure everything’s OK.” I thought I might avoid it because I told them the headaches were better, but this morning while I was half asleep somebody came and took me for the test. It’s loud and jarring; it sounds like someone is drilling into your head. In any case, good news on that front: There is nothing wrong with my brain.

I just came back from ultrasound testing on my legs to rule out a blood clot, because my ankles have remained pretty swollen despite taking a diuretic. The transporters taking you to these tests love to yell ahead, "BMT," "BMT" on six. (As in Bone Marrow Transplant). I'm sure it's the most efficient way to get quick service, but it also makes you feel totally self-conscious. In any case, the doctor who did the test told me the results: no blood clots.

 I’ve been taking lots of drugs – codeine for the cough, Ativan to calm me down, Demerol when I get the shakes as a fever rises, usually once a day. Also every time I turn around they are giving my IV-Benadryl, to head off reaction from platelets or some of the antibiotics I’m still on. Much of the time I’m pretty spaced out, which is fine with me.

My cousin Jeanne took the train up from New York on Tuesday. We’re nine months apart and have always been very close. For some reason when we were kids, we planned that when we grew up, we’d open a pet store in Florida together. Obviously, we didn’t. She works in the advertising business in New York and I’m a reporter in Western Massachusetts. We talked for a long time and then had “cocktail hour.” For ambiance, I turned on the electric candle that Vytas had brought me. We drank two little Cokes and toasted to a happy HEALTHY New Year.