Thursday, April 20, 2006

4.20.06, Backstory: Love & Stools, Before IV Chemo #2

Backstory: Love & Stools, Before IV Chemo #2
(letter to family 18 April 2006)

Hi Everybody,

First to S., sorry I didn’t call today, I got sidetracked with my friend T.J. who came up from San Diego for the weekend and was leaving this afternoon. I hope I didn’t make you worry since every thing is fine here, rather good today, and I hope I didn't make you suffer too much boredom with all the joyful high school students on the bus/es.

Tomorrow afternoon is my second chemo trip, second time for the IV portion of things in which I get gemcitabine and taxotere — the “G” and the “T” portions of the GTX regimen, or regime as who was saying? They do my blood work at noon, I start infusions at 1 p.m., then I just lie around until 3:30 or so, I think. The timing might be different from last week, apparently the first time you take the infusion it often takes longer. A number of secondary drugs (e.g., histamine blockers) are given during the infusion too, but I don’t have the literature on all this since they gave it to mom last week. It’s there in salt lake somewhere! if someone would be so kind as to collect whatever she took with her and, feel free to make copies and keep the copies, but I’d like to get all the original paperwork and lit back if possible. If it’s only generic drug specs then the originals are inconsequential, but. And in case people are bored or curious, I’m going to include three attachments to this email of medical articles (one’s only an abstract, I’m working on getting the full text) on the drug combos, therapies, and their comparative effectiveness. They should be heartening since the GTX regime that I’m doing stands up well, appears to do better than other options studied. —These are thanks to Kim whose ability to research and find these things is infinitely better than mine. [See titles below.*]

[Secondary drugs listed below.**]

Also in terms of helpful literature, mom took with her a folder, just over an inch thick, with a clear plastic cover from the SCCA [Seattle Cancer Care Alliance] called the “Patient Care Manual” which I thought might be of some help or again just satisfy people’s curiosity. I’d meant to send a photocopy of mine but mom was able to get one from the hospital when she was here. I’d recommend someone getting that from mom and copying it too. she might be hoarding all this info.

I expect tomorrow will go smoothly, and since it doesn’t include any surgery this time it should be much less demanding on me physically. even still, I might be either out of it or just too tired to talk on the phone or email afterward so don’t be surprised if you don’t hear anything from me. If there are any hitches I'll have my friend G., who’s going with me, give a call.

Yesterday was easter, as you may know, and the Large Fuzzy Bunny brought me a new TV (actually the first I’ve ever owned!) and a DVD player, via my friends from my writing group and my same hiring “class” at the university. Isn’t that thoughtful, actually. So I’ll have to watch more DVDs now, on a screen larger than my laptop. Also I got out to run for the first time since the surgery Tuesday, and then the lovely impacted bowels and marathon evacuation I went through. I kept it slow and tried not to test my Wound/sutures — seeing a jogger with blood spurting out of a tube that dangles from the aorta might be disconcerting, so out of concern for others I tried to be polite. (The porta-cath is actually totally subcutaneous so that would or should never happen, although it does press the skin out over the port part of it, so it looks like I have a strange lump, but you can seen the catheter part too, the tubing that runs up to my neck and then dips back in toward my heart and it’s probably pretty apparent if I’m running around shirtless.)

OK, everybody take their pain pills and don’t forget your stool softeners! Remember that it’s easier to manage your pain by controlling it and harder to stop it once it starts in earnest. and constipation, forget about it!

Love and stools,
Mr. Jones

P.S., I have a break in IVs until the first of May so I’m thinking of coming out to Zion pretty soon, just want to see how tomorrow goes first.

[And, again, someone please pass all this on to mom]

[*The articles referred to are: “Decrease of CA 19-9 during chemotherapy with gemcitabine predicts survival time in patients with advanced pancreatic cancer,” U. Halm, T. Schumann, et al., _British Journal of Cancer_ 82.5 (2000): 1013-1016; “Biweekly Low-Dose Sequential Gemcitabine, 5-Fluorouracil, Leucovorin, and Cisplatin (GFP): A Highly Active Novel Therapy for Metastatic Adenocarcinoma of the Exocrine Pancreas,” Miguel Araneo, M.D., Howard W. Bruckner, M.D., et al., _Cancer Investigation_ 21.4 (2003): 489-496; “Gemcitabine versus cisplatin, epirubicin, fluorouracil, and gemcitabine in advanced pancreatic cancer: a randomized controlled multicentre phase III trial,” Michele Reni, Stefano Cordio, et al., _Lancet Oncol_ 6 (2005): 369-276.]

[**Notes for the anal, Secondary drugs: Gemcitabine and Taxotere are the primary drugs, but to cope with side effects, potential and unavoidable they load you up with other drugs for about 30 or 40 minutes before they begin the full-service oil change. They are Benadryl 50 mg IV; Dexamethasone 10 mg IV; Ranitidine Hydrochloride 50 mg IV; Ondansetron Hydrochloride 8 mg IV—it seems these are to block histamines, induce appetite, protect the stomach / antiulcer, prevent nausea / antiemetic respectively. But what do I know? I’m a doctor of philosophy, not pharmacology.]


lefty said...

mr. jones, since i received the original e-mail of this post i want to thank you for reposting (?) it with added footnotes. i am one of the anal and proud of it. the added comments were actually very helpful and cleared up some questions i had about your treatment. we're getting your home in zion ready and look forward to your arrival. all of my love to you, lefty

Slarry said...

I cannot think of death right now-- for you have always been, always will be LIFE to me ... The possible loss of Mr. Jones. I still refute it-- even the thought of it will forever and always enrage me. I try and keep myself busy, but this possible loss, this huge void, the possible emptiness always manages to sneak up on me. Like today, while looking up a number on my cell phone and passing his name and number-- something I've done a zillion times. But then my mind goes wandering, wondering, questioning-- how many tangible things I have surrounding me that bear his name, represent him and who he is to me. and then the darkness comes, the possible reality of it all, -- catches me off guard. The ease and comfort of hearing his voice or having the choice I now have, of calling him whenever I want to; knowing that he will either answer the phone or call me back after he finishes his studies. Just knowing that he is there; available and present as he always has been for me. Who, what has the right to rob and disrupt his life.??? Similarly, who or what has the right to rob me of him??
I've got to remember to breathe-- Hope and love are stronger. I will continue to fight, rage and scream, until I am breathless-- about how nonsensical and rude this all is. I will do everything in my power to change its course, stop its growth. Pancreatic Cancer--What bad manners you have?
Stay away from my family -- especially my brother.