A pain in the ...

This whole episode is a pain in the ass. It is also a pain in the lip.

After my surgery yesterday, Dr. Neel prescribed 5 mgs. of oxycodone every four hours and gave me 12 tablets. I have taken so much of this stuff in the past that I need more to get the same result. I took one at 3 p.m. and another an hour later, giving me enough respite to write yesterday's post.

Then the pain came shooting back, along with tears. I paged Melissa, my go-to person, and she said I could take two Tylenol and an Ativan, and then around seven I could take three oxycodone if I wanted to. Katie came over, good medicine in itself.

The drug I took after my kidney surgery, hydromorphone, is stronger, and I have some at home that I can switch to when I get back this afternoon. In any case, the pain calmed down last night, but the narcotics caused a loopy, restless sleep.

This morning I got up first and made coffee. I ate a banana and took a few pills and suddenly felt faint and saw white spots around me. I got to the couch with a big glass of water and felt better after I drank it. David gave me his arm and led me back to the table. I made oatmeal and felt even better.

Meanwhile,  I drove my car to Newton but am in no shape to drive it back. I guess I thought I'd get a couple of little stitches and would be able to drive back. Or I didn't think at all.

So...Joe is picking me up today. I'll leave my car here and then over the weekend Katie will drive it back home. Then Joe will drive her back to Brandeis and drive himself back home.

It definitely takes a village.

Goodbye spot, hello penicillin

I have survived two very long days and a lot of needles, with good results.

I'll go backwards chronologically because the lip surgery is fresh on my mind. I was there for about four hours today because Dr. Neel had to make two passes to get all of the squamous cell cancer off my lip. I was most concerned about how it would feel to get the first needle of numbing medicine in my lip. I've been stuck a lot, but it's such a sensitive spot.

The doctor gave me a blue "stress ball" to squeeze. The needle stung, but it actually wasn't so bad. Then of course I couldn't feel a thing when he operated. When he finished, I started shaking. His assistant said it was from the anesthesia, and it wore off in a bit. I sat in the waiting room with other partially bandaged patients all waiting to see if he needed to take more. Last time I had the Mohs procedure done (on my neck) he said that for deeper skin cancers, he has had to take up to five passes.

The book I am reading, "Orange is the New Black," is just the right thing for a waiting room. Well-written, not too deep, and definitely an interesting story. So I read that and dozed until I was called in again and told he had to take a little more. Then he gave me seven stitches and a prescription for oxycodone. Diane had scheduled a meeting downtown, so she was there to take me home. I had meant to bring some of my own pills but forgot. (How do you get up at 6:30 a.m. and end up rushing at 11 when it's time to leave?) Big mistake. Diane had to listen to a symphony of pain sounds until we got the prescription from CVS. Now I feel OK, although my lip is swollen like a boxer's. I have to eat soft foods out of the corner of my mouth. Nice Nurse Diane is going to mush up some squash for me.

So, as for yesterday. I passed the penicillin "challenge," which also involved many hours and many needles. The doctor, a fellow, then looked at my chart and suggested I return for another long visit to check whether I am allergic to imipenem, an antibiotic that caused me to break out in hives when I got it intravenously to treat the pneumonia I had this spring.

I am not a doctor, but I ventured to ask why I needed to be tested to see whether I am allergic to a drug that caused an allergic reaction. He said that sometimes hives appear for no reason.

Hmmmmm. I said I would talk to Dr. Alyea and Melissa first. I think they will agree with me that another allergy test will fall into the category of unnecessary testing.

Back and forth to Boston

Katryn Gabrielson and moi

It was really nice to spend a day in Boston yesterday for a reason other than medical appointments.

I met my friend Katryn from Vassar there for a walk along the Charles and a stop at our favorite bistro and bakery, Panificio, located on Charles Street right across from the Esplanade, where we planned to walk. Well, to tell the truth, we stopped there twice, first for lunch and second for coffee and a pastry after we walked. Actually, we could have sat there for the whole day talking and catching up in what has come to be a yearly outing as we meet somewhere between her home in Portland, Maine, and mine in South Hadley.

After my trip to San Francisco, I had wanted a visual drink of water to remind myself that we have our own beautiful waterway. 

My reprieve, alas, is short-lived.

Starting Wednesday I have three days of appointments in Boston. First, penicillin allergy testing and second, removal of the squamous cell cancer on my lip.

For Friday I added a third appointment with a dentist at Brigham and Women's Hospital specializing in issues relating to transplant patients. First of all, with my dentist removing teeth left and right, members of my care team said it's a good time to check in with an expert. Also, Dr. Goguen (the tongue doctor) and I discussed the possibility that the spot on my tongue might have occurred because I am missing the last tooth on the bottom left, and the "new" back tooth might be cutting into the area on the side of my tongue that she had scooped out due to the presence of pre-cancerous cells.

During three days of pokes and prods, visions of the Charles will dance in my head.

Stop and see the flowers

My mother never met a flower that she couldn't use.

If a bud or bloom came off a stalk, she made a "floater" and placed it in the middle of the dining room table. She always had something beautiful to put in.

Here are some floaters that came off the hydrangea bush in my front yard. I put them in a crystal bowl that sits on silver legs. I guess this is supposed to be a serving piece, but it was better served as a place for floaters.

My mother was a habitual worrier like I am, but when she was making something beautiful, she wasn't thinking about anything else. She picked flowers from her garden and placed them in a vase so that they would fall just so. She said that when she had trouble sleeping, she worked in her garden.

Here is an example often used to describe how to be in the moment: "When doing the dishes, just do the dishes."

Putting the floaters on the table worked for me.

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?

Morning meds

Swish and spit gross anti-fungal mouthwash.

Suck on gross anti-fungal lozenge.

Take 14 pills.

Use prescription eye drops.

Wash off anti-viral cream applied to hands last night.

Sigh and say to friend: "So many meds."

Words of wisdom from the friend: "Thank goodness for that medicine."