Hey Death- Drop dead!
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Jeff:
It’s great to hear that you are getting good news! And maybe you have something there with your “alternative treatment or non-treatment”, however you want to put it.
I agree with you about the pain meds. I DO take sleeping pills, because I’ve never been much of a sleeper, but since the diagnosis last year, sleep is definitely elusive. I take an omeprazole every morning because I have a pump in my abdomen, and I take an occasional (2-3x a week) Tylenol for pain. That’s my regular amount of pills. Oh, yeah, and the chemo pills every other week. You see, I’m pretty much following the “norm”.
I hope you are documenting what you are doing, and that some doctors are paying attention! Especially since it seems to be working better than chemo. Too bad your “super powder” maker has disappeared. He or she might have a key to defeating this horrible disease.
As far as your blog: I have one on caringbridge.org. It’s really easy to sign up and start typing. And you can upload pictures. And read comments. If you want to see mine, it’s at http://www.caringbridge.org/visit/krisjacobson
Good luck and God bless! I want to hear more good news from you!Hi Julia and My Mom-
Thanks for your replies. I haven’t yet started the blog and feel I need a kickstart to know how to begin, where to go, etc. I can think, speak and type, but I’m a dufus with computers often and quite medieval. I’d be looking for my laptop atop King Arthur’s Round Table I’m often so far behind.
My body really loves New Zealand lamb, kale salad and cabbage salad which I eat almost daily. The mystery Chinese powder my relatives swear kept me alive had its maker arrested by the authorites, and he’s been spirited away to parts unknown, but I still have months of it left in my frig.
My weight, 126 post-Whipple, is back up to 148 now as it was pre-Whipple. I am about as muscular as I was then minus 10-15% which is important as this bad toe/foot/hip often wakes me up at night with pain and I need be strong everywhere else to not limp around. Funny thing is I never take pain drugs, and my closet is loaded with them. I just don’t want to. I hate being groggy from drugs. If I never mentioned it, I can go to sleep quickly (if the room is quiet and warm) and when I wake, no matter when or how deep the sleep, it’s 100% awake instantly. My voice, eyes and thoughts are all fully wakeful as though I’ve been up for hours. No one knows why, but it would have come in handy as a doc or field general.
I wish you all well, and may we all recover and stay healthy!
Jeff
Congratulations on good results!! If you’re at month 5.5 post-whipple, I have a healthy run-up to your party to start saving for the airfare from London to LA. I want to be at your 24 month party.
It’s a great letter, Jeff. Have you posted your blog yet??
Take care and keep fighting
Julia
I hope I am posting this in the right place. I have trouble finding where K’m supposed to be and feel a bit lost most of the time. Below is what I wrote to my tiny circle of family and friends after my latest scan. Anyone is LA is enthusiastically invited to my next party. Come one, come all. May we all get better and wake up knwoing this was just a terrible dream we had.
April 12, 2012
Hello Everyone,
Well, to put in brief, I’m destined to live (for a while at least). As referenced in a few of the last emails, last Friday I had an MRI series of pelvis and abdomen lasting around 4 hours, with and without contrast. The results are completely “negative”. So there are no changes at all. So of the months since the Whipple and the resection of the main tumor, I am at month 5.5. The goal is to get out to month 24 after which the chances of recurrence drop to 20%. I found a cholangio group online which covers a lot of the Western world. I’ve exchanged emails from North America, the UK and elsewhere. In it all of us are cc. I am ECCT3 or extrahepatic cc, stage T3. There is only one other person with this designation, a woman in Canada. She is taking treatment, and as you know, I am not (except for my weird regimen of Chinese doctors and herbs, AK, exercise, mixed diet, xi gong, etc.). There are others such as ICC or T2 and below, all better conditions, and many of those are faring worse than I. So for the advanced and deadly form of cancer I have, I am doing really great. There’s no question how extreme ECCT3 is or how healthy I am with daily gym, diving, swimming, yoga, Pilates and what else. I am so far away from the center of the bell curve, I am off the page.
Funny things result. At the oncology center I go to for my doc, a woman remarked that “at least you haven’t lost your hair”, speaking from under a large hat. I haven’t because I haven’t taken any chemo or radio, unlike basically everyone there. I realized I am unlike most at the onco office. If you are before cancer, haven’t had it, you don’t need to be there. If you are after and are dead, you can’t be there. The only people there are during with most of those treating. I’m just bounding in for blood tests and occasional consults, but am as different from most patients there in approach and mood as night is from day.
Another one is when docs hear of my cancer and ask, with their face seriously darkening, “And what medications are you on now?” They take out a giant clipboard and prepare for 20 minutes of note taking. I say I take Prevacid for acid reflux and pancreatic enzyme Zenpep to digest fats. And that’s it. “That’s it?” they ask incredulously. Then they look lost as if they don’t know what to do. When it comes to where I say how I’m not treating and why, they usually tell me in lowered tones that’s what they would do too. But are they telling me the truth or shining me on?
So now it’s hammering at this rock of voice work where I have the right voice but no training in acting so I still can’t get work. I have a home studio of a mike in a Styrofoam box and free software I use to make and submit recordings. Eventually I will get better and get work. A friend has invited me to Cabo next week and I will take my mike along with me to respond to auditions. I found a Pilates studio down there so I can unkink my bad hip and not have my back lock up.
So here we are- I got the big, bad cancer but it doesn’t have me. I’d like to get out to month #24 and beyond and get work, but just being alive, and more importantly well and active, I feel like I’ve won the Life & Health Lottery Big Ticket.
In a couple of months if this is still the case, expect to be invited to a “Fuck off, cancer!” party, a more aggressively positioned version of my “Ain’t Dead Yet” party 3 months ago. More parties, less infirmity, more activity, less apprehension- that’s the way I like it, I think the way we all like it, for ourselves and those we care about.
So, in that vein, I hope to be writing these bulletins centuries into the future with love, as
Jeff
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