Thursday, July 23, 2009

Today was my last chemo treatment of “VDD” Velcade, Decadron, and Doxil. Next week is my week “off” from therapy. We have filled that rest week with tests that will have results sent to UCSF. On August 5 we load up the Honda CRV again and drive to UCSF to meet with Dr. Wolf, the scheduling nurse, and the social worker. I have to bring my support people with me. (Maggie says we don’t have a bus that big). The social worker wants to make sure that my 24 hour care givers will know how to tell if something is wrong. Apparently the social worker will let my insurance company know that I’m a good risk. So August 5th is a road trip to San Francisco. After that I should know more dates.
I’m looking forward to moving forward.

Monday July 20, 2009

Good day! In Fresno, we got nearly all the UCSF required medical tests scheduled with-in the two week window. I’m impressed. We are on a tight time-line and I’m ready to go!
I mentioned that the neuropathy (in my legs) is giving me grief so we increased the dosage of Neurontin. Dr. Garley also prescribed some Vicodin. I came home and had the best nap in weeks! Even with half a tablet!
This evening Kent and Pam dropped by with a home-made peach pie. It was good to talk of school topics and look towards the future.
God shows his love for me by putting his people in the right place to support me. For that, I am grateful.

UCSF Continued: The plan - long version

Here’s what needs to happen;
1. Re- take the tests we’ve already taken (in Fresno) and send new results to Dr. Wolf.
2. Return to San Francisco to sign consent forms and meet with a social worker who wants to know that when I am finally discharged after transplant, I will have around the clock care. (This is where my friends come in!).
3. In Fresno I get daily shots to encourage the production of the stem cells and forcing them out into the blood.
4. Back to San Francisco where I will undergo the collection of stem cells as an outpatient. (We’ll stay in a hotel.) A large IV catheter will be placed in one of the large veins in my neck. The collection of blood is taken and separated to collect stem cells. Remaining blood is returned to my body. Each collection takes approximately 4 hours (lying very still, no eating, using a bed pan – tv available) This could take 1-5 days depending on how productive I am. When I have enough, the catheter is removed and the stem cells are frozen for later use (2 treatments).
5. I get a rest in Fresno, where I may need more blood tests.
6. Back to San Francisco for the Transplant! I get a new, super, powerful chemotherapy drug called melphalan -1 time injection. Then after two days, when the drug is out of my system I will be given my stem cells by transfusion. Seven to ten days after my stem cells are given to me, my blood counts will go low from the chemotherapy. This is the most dangerous period of the transplant. I will need antibiotics to prevent infections.
7. I will return to Fresno for recuperation (round the clock care at home) I may need transfusion of red blood cells. I have to return to UCSF at least once in the first week at home. For a month I have to avoid groups of people and avoid people with illnesses. I will have blood tests monthly. After 3 months I will have a repeat bone marrow aspiration and biopsy procedure. Another bone marrow biopsy is done at 1 year post-transplant.
8. The doctor believes that I will return to teaching at the semester break, Jannuary 22, 2010.
9. Whew! That’s a lot of work!

Meeting with Dr. Wolf. Tuesday, July 14, 2009

George and I had an early drive from Fresno to San Francisco. We arrived at UCSF on time, 12:30, and had a minimum of wait. They drew blood. Dr. Wolf’s assistant, Dr. Wieduwilt, MD,PhD. went over my medical history. Dr. Wolf then spent over 50 minutes with us – I know because we turned over the 90 minute cassette tape we were recording on! The scheduling nurse described all the hoops we now have to jump through: more tests, more drugs, more trips to San Francisco, and more signatures. We’d like to be on the fast track, because that means less chemo therapy here. It was a great thing that we had read all the current literature here, because we were fairly well prepared for the news and procedure. It was an exhausting day, I was glad we didn’t have to drive home that night.
We stayed the night in a refurbished old hotel at the east end of Golden Gate Park, quite nice. We had a relaxing meal then returned to the hotel. We drove home the next day.

Important Tuesday, July 14

Bright and early Tuesday morning, George and I will head north to San Francisco. We will be meeting with Doctor Jeffrey Wolf of the UCSF Medical Center.

Monday, July 13, 2009

I’m so glad it’s Monday! Did I really say that? Yes. Today I had my visit with my regular oncology doctor. She didn’t give out any statistical information, but was encouraging anyway. Oh yeah, she said I could double the dose of Neurontin for more neuropathy (leg pain) relief. She confirmed Jennifer’s & Deb’s advice to gradually increase and decrease dosages. Doc was not in favor of reducing the amount of Velcade (the cause of the neuropathy) in my Chemo Cocktail. The IV was easy because of the Medi-port. While “dripping,” I read some more of the information Aunt Audrie got from the Los Angeles Area Myeloma Support Group. Talk about support, Aunt Audrie went to the meeting all by herself and got a wealth of current information for me. She bundled up all the booklets and mailed them to me. Today I read: Understanding Stem Cell Transplant. So now I do understand modern bone marrow transplant. Cindy drove me home – by way of the local rice bowl vender. Jennifer L. and kids showed up at home to swap recently read books. Like I said, it’s a good Monday!

ouch - seriously

Monday, July 06, 2009
I can’t remember what I was going to write about because I have a new topic. I have experienced a new stage of neuropathy. I’ve had neuropathy since the third week. It isn’t too bad. A little tingling, my hands and feet feel hot and cold or can’t tell what they feel. I didn’t understand what the big deal was. Today I found out about the big deal. I’m kinda whining, but this is pain. I’m feeling pain behind my knee, around my ankle, in my arches and below my calves. The only relief from the pain is when I’m walking. It doesn’t let me sleep. I looked it up on www.cancercompass.com . Everyone agrees that this is the real kind of side effect. I haven’t been taking Demerol , but today Jess gave me a shot. No effect. I took multi vitamins, a banana, and cough syrup with codeine. It looks like if you have this effect, you shorten your Velcade treatment. Unfortunately, this is my week off, so there is nothing to shorten! I’ll call the advice nurse tomorrow, maybe they have some serious pain medication. Tonight I’m praying for sleep…