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Friday, Dec 30: Today was my chemo day at Stanford. Jerry Hurley, my next door neighbor came with me and drove me home. I got to drive my RV for three and half hours on the trip up the coast. God I love driving that vehicle. We headed out at 3:15 A.M. and arrived after 7 with a stop for MacDonald sausage and eggs (you see my nausea is better with steroids!) The lab had problems with my veins and it took three sticks to get the blood and IV started. I dreaded needle sticks before this illness started. I could care less now.
The visit didn't go so well. The purpose of chemo is more quality of life, less about much in the way or increased life expectancy. Most people are dead in 4 to 8 months. The primary goal is pain reduction. However, my chest and abdominal pain have been increasing and I have needed more opiates. This is interpreted as a failure of the current regimen. Therefore, I was taken out of the clinical study and 1 drug was changed. Pemetrexed was substituted for Taxol. I was encouraged to do 3 more rounds of therapy with Carboplatin, Avastin, and now Pemetrexed ( Alimta). Alimta eliminates the possibility for using Advil for pain or garlic in my food because of interactions, but the new drug, Alimta, drug is less likely to cause weakness and shortness of breath.
A more worrisome part of the visit was addressing nausea that I've had for the past few days. Dr. Neal thinks the nausea appeared too long after the last chemo round to blame it for the nausea. Unfortunately, the brain is a common site for metastases for this lung tumor. Tumors in the brain can cause increased brain pressure which can cause nausea.
I have had a couple of recent "scintillating scotomas", (described in a previous blog post) and headaches which could indicate brain tumor. I will get a repeat MRI. The last was done on 9/30. Single brain metastases can be treated with radiation. Dexamethasone (Decadron) is also used to reduce brain swelling that occur around tumors. Once I started the Dexamethasone, the nausea cleared almost immediately. So, I've been given permission to use Decadron for nausea if it works.
The best part of the clinic visit was the reduction of time required for infusion with the elimination of Taxol which takes more than 3 hours to run. I was out of the infusion room in less than 3 hours and was home in Morro Bay for dinner at 5 P.M.
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There were two particularly wonderful parts of the day for me. The first occurred at 3 A.M. when I was opening the chest freezer on the ground floor to get some ice packs to keep my lunch cool for the trip to Stanford. Jasmine had noted that the only thing I was able to eat on 12/26 was ice-cream. The freezer was packed with my favorite Haagen-Daz including Java Chip. Such a loving act.
A second beautiful part of the day was speaking with my son, Brian, who wants me to see his children before passing on. I haven't seen Ana Paola since her heart surgery for AV septal defect--a part of her Trisomy 21. His attachment to her is so obvious in casual conversation--heartwarming.
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I was sound asleep but awoke about 12:45 A.M. Saturday with severe left back pain...maybe the worst so far. I got up and took more oxycodone. A few minutes later thought I might try a little bit of marijuana. I have some very low grade stuff that I decided to use in order to better manipulate my dose...less likely to go past what I really need. In other words, I want the possible relief with the least possible side effects, such as being "too high" and unable to make logical connections. Anyway I used what I thought was a small bit from the least potent...just to see.
It was very good for about an hour. Things were very funny. For example, I was thinking about people in the medical profession who made the "wrong" decision about their specialty when they were better suited for other areas of medical practice.
I thought about myself.
In general, this series of pictures brings together my recent activities with some important information about the way in which I collect data (and probably explains a lot about the way in which I think). Just an example:
Problem: To Measure and Desribe or Show to You the Size of a Closet Door Opening
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| Overall General Appreciation of Size: Forget the Gallon jug there. Imagine it removed. |
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| Measurement 1: More than 2 Shoe lengths but less than 3 shoe lengths |
Measurement 2: 2 shoe lengths (one shoe has been removed for next measurement leaving previous back shoe in place) and 1/4 shoe width.
Final Tally: Opening is 2 shoe lengths and 1/4 shoe width.
I warned her that I had used marijuana and was a little manic. She said that she noticed that. At first I worried that this was a judgment (pothead!!) but it wasn't--just an observation. We spent the few hours talking about communication and specifically about her decision to spend a year and a half doing anesthesia in England where precision and organization of work is essential.
Now look at the picture panel of measurements above. Is that the level of precision that you would feel comfortable with in the person who ill (Freudian slip, I mean will) be measuring your new hip prosthesis length, or your dentist measuring for your dentures or your tooth crown? Please do give me some credit for my understanding that this is a crude first effort. However, Jasmine would probably go get a measuring stick. My excuse for not doing so is the long trip to the garage, but in all honesty, the shoes seemed sufficient.
Saturday Dec 31: The back pain kept me up for night and Mark Ward switched me over to a new opiate, the Fentanyl patch. It is very long acting...3 days...and it takes some trial and error to find the right dose. However, the pharmacist became concerned about the starting dose, there was a delay, and the pharmacy closed at 5 P.M. for New Years Eve. So I was up several times taking the short-acting oxycodone.
Sunday Jan 1: The patch is available and things feel more manageable. The side-effects from the round of chemo generally kick-in 48 - 72 hours afterward.
Best wishes.
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