Wednesday, June 10, 2009

Treatment - the marathon week

May 26

Last week was 5 straight days at Washington Hospital Center.
Monday: Consult and blood draw.
Tuesday: Bone Marrow Biopsy. This is done from the Pelvis. My Doctor actually performed the procedure. They start with IV Fentanel to “take the edge off.” Had to ask how long that would last since I drove in from work! (Mom followed me home after all was done). Then a local anesthetic at the site. They use a stiff big bore needle to aspirate the bone marrow. Better than the drill I had in my minds eye. Just some dull pressure and burning for the procedure. Then they sat me up for an hour just to watch me before going home.
Wednesday: Fast Day #1 for the PET scan. 8:00 am. They use a radioactive glucose solution to measure metabolic activity so they need you fasted so that the cells suck it up. It’s like a CT scan except it takes about 20 minutes. Worst part is they have your arms over your head. If they are not perfectly supported (and mine were not) it quickly feels like you are being crucified with your arms just hanging off your shoulders. I held out for most of it but they had to talk me through for the last 4 – 6 minutes.
Thursday: Fast Day #2 for the medi-port insertion. 5:30 am at the hospital. That’s basically an easy access port that lives under the skin – accessed by a special needle. Placement is just below the collar bone. Surgical orders said “Left, maybe right.” I reminded the surgeon when I saw him that the left was still recovering from two biopsies, and right would be best. It wasn’t general anesthesia, but as far as I was concerned I was out. Only one hour total in the OR.
With the 2 early fasting days by Thursday afternoon I was done. Crawled into bed by 8:00 pm to get rested for …
Friday: Day 1 of chemo. My twin brother Jon and family was in town and he went down with me. He’s a biologist by trade and basically knew more about the drugs than the nurses. He was all over his laptop looking stuff up in the morning. The treatment is 4 drugs, all given in sequence. 2 by IV push, one 20 minute drip, one 2 hour drip. They loaded me with 2 bags of saline for hydration and gave me a small test injection with one of the drugs in my belly to test for allergic reaction. Burned a bit but nothing remarkable. Good to go. Nurse showed up gowned and gloved with the first drug. I asked “Is that for my protection?” already knowing the answer. “No, it’s for mine,” she told me.
First three drugs went in with no noticeable effects. The fourth one, Dacarbazine, took 2 hours to infuse by IV. This one, on occasion, was a bit “burney” going in the vein. I let the nurse know and she upped the saline to dilute it and it helped a bit. Apparently this will ruin a peripheral vein, as happened to a friend of Claire’s who is currently under treatment for the same disease. We were done by 2 and out by 2:30.
Saturday: Slept in for the first time in a week. Didn’t feel great but felt good enough. Took the nausea meds and called my brother for a ride. I had him captain my tandem for a 22 mile ride through Patomac. He did most of the work and we took about 1 hr. 20. That MAY not have been the best thing to do (more coming up). Later, went out to dinner with him and another friend downtown. Ethiopian. Not the best. Also, MAY not have been the best thing to do. Still feeling tired, taste is off. Bed by 10:00 pm.
Sunday: The bad day. Woke up at 7 feeling about the same. Well maybe not quite the same. Tried to eat a pancake for breakfast. By 9 I was having stomach cramps and had vomited twice. Called the On-call doc and he sent me to my medicine stash for Compazine, which is specifically an anti-vomiting drug. It also tends to knock you out. I spent the rest of the morning and most of the afternoon stretched out on the couch. No energy at all. Around me an army of family was taking care of the kids, the house, me, and everything else. Fortunately, the drug did it’s job. In the meantime, I’m feeling a bit warm and they’re taking my temp every couple hours. Well it hit 101 around 4 or so, just as I was coming out of my Compazine stupor (and taking another go back in). Automatic fever protocol. This was made VERY clear by my Doctor. Go to the ER, where they do blood counts, cultures and Chest X-ray looking for neutropenia (low WBC) or infection. Nothing found, just orders to follow up with my Doc. Today. ER trip was 5 – 8:30. Got home and actually had a bit to eat before going back to bed. You see I was all tired out from laying on the couch all day.
Monday: Woke up. Took my Compazine. In and out until 3. Felt good enough in the afternoon to walk the dog.
Today: Decided to try work. Felt a little shaky in the morning but it worked out alright. Left at 4 to beat the traffic.

This weeks adventures:
Wednesday: Surgical Follow up at NIH, then a trip to WHC for blood counts.
Friday: More blood work at WHC.

I have to say I’ve been very impressed with my Doctor, Vera Malkovska. She’s the chief of hematology at WHC and was highly recommended by the Lymphma team at NCI/NIH. She seems to be a strong patient advocate. Her philosophy about the nausea is that it SHOULD NOT be a problem with the drugs available now. And if it is, call her or her team. She was there Tuesday to perform the bone marrow biopsy, and she stopped by Friday during treatment. Funny story – she said if I go out riding with friends to tell them I might “check out” half way through the ride if I felt tired. She’s from Eastern Europe (Czech?) and wasn’t familiar with THAT colloquialism. I couldn’t help telling her the OTHER meaning of “check out!”

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