jenny's belly

Ramp Beds are Cool

You know when you have acid reflux how it's usually because of a huge meal? Like say you ate too much bacon, then you're tasting bacon the rest of the day? I always taste medicine. It's absolutely disgusting. (:P) I just thought I'd share.

So my dad took down the roped-at-an-angle cot (yay!) since I'm doing pretty well sleeping in a bed, and he put the headboard on some risers my mom bought. I'm supposed to sleep at an angle, but the funny thing is that my brother's bed (again, *my* comfy canopy bed is in my condo, which should frankly be up for rent at this point) anyway, my brother's bed does not have a footboard. So I have a slow-slide down the bed with nothing to stop me. My aunt Jo said we should get the walkie-talkies out again: "Hello? Anyone? I've slipped out of bed and I'm stuck on the floor again..."

I went to Friendy's today with Dr. Crazy and ate a grilled cheese sandwich (no crusts) and a few fries. It's DEFINITELY the most normal food I've eaten. I always feel like I've just eaten a thanksgiving meal. Food is just that appetizing. Plus since it comes back regularly, you have to make good choices. hehehe. We each bought something called a Peanut Butter Lust Bar. I can't believe I haven't eaten mine yet. Anything called a "Lust Bar" HAS to be good.

Okay, I am stalling.

I met my oncologist, Dr. Bhargava at Dana Farber on friday with my mom and dad. Lisa was the official note-taker, which is good because much of it was hard to listen to. I will be getting Chemo and Radiation as I discussed earlier, but there was something about being at DANA FARBER and having the things described which will happen to ME which have only happened to other people. That I'll be weak and tired, probably nauseous unless *other* drugs start to work, possible kidney failure, possible heart damage, I may lose hair with one treatment option and will lose all my hair with another,... and that's part of it. I have to choose my treatment.

There's standard, and what I call "standard plus" which is a study I can take part in.

Under standard I'll have 3 weeks of chemotherapy. I will go into DF once a week. Then for 6 weeks I'll have chemotherapy and radiation. This is every single miserable day. EVERY DAY FOR SIX WEEKS. (Anyone offering help will not be turned down-- I'm going to need a lot of rides into Boston to relieve my poor mom!) After six weeks of both, I'll get a month off to recover. And then we repeat the cycle two more times.

So that puts us in April. They'll watch me like mad for 2 years, then back off a bit as I'd be considered "in remission" if nothing else happens. After five years I'm "cured" but I don't think I'll ever stop looking over my shoulder. Nor will I stop going to DF. It's just going to be part of my life, I guess. That part is kind of hard to take. I'm only 30. I look at people who are starting families or really breaking into their prime in their careers at this age. I feel like my life is on hold and 125% out of my hands. It's kind of depressing. I try not to think that way.

I will have to go back to Dana Farber in about 2 weeks to meet with my Radiologist. They're also going to schedule me for day surgery at Brigham and Women's. I have to have a "port" set under my skin, along with some tubing (ARRGHGHGHHGHHG I HATE THIS IDEA!!!!). It's basically the way they will get chemotherapy to my body during the six weeks of radiation. I have to have it flowing 24/7. I will have to sleep with this bag thing which attractively comes in a fanny-pack style. I'll have to live with it for 6 weeks... and when it comes off, I'll know I have to do it TWO MORE TIMES.

So I remind myself that the cancer is gone, and I need to go through this process to make sure it does NOT come back. The oncologist said that 2 out of the 13 lymph nodes removed were cancerous. So those are good odds. Not like 12 out of 13. Plus, they're gone now. I'm likely cancer-free, at least at this point. The cancer in my stomach was THIS TIME described as fast/aggressive (didn't I say it was slow earlier? I think I did) and estimated I've had it 1-3 years. AND- there was another tumor (non-cancerous) in my stomach which was removed with everything else.

Holy crap!!

It makes me a bit numb still, but I'm continuing my "live for today, and today I don't have to deal with it" philosophy. I have NEVER been this kind of person. I live in the past and look to the future with general anxiety. And *NOW* I can say that after I log off here I'll go up to bed, and when I wake up tomorrow I'll probably have a hard-boiled egg. And that's as far forward as I'll think.

Oh, I mentioned "standard plus"-- the study. That would mean that I do exactly as described above but I would take 2 additional drugs and the chemo would always be through the port. It's MUCH more aggressive, and of course, many more and uglier side-effects. The oncologist mentioned the study exists because the odds of being cured (not just remission) through standard means are about 75-80%. Those are admittedly GOOD odds, but not GREAT odds.

And if I decide to go with the study, it only means I've agreed to it-- a computer in North Carolina ultimately decides if I will get it. Nurses will check me out, and if I am a good candidate, they'll put my info in this be-all-end-all computer which will randomly decide if I get standard or standard plus. My mom was not thrilled that my "life is in the hands of a computer". Though the doctor disagreed, I see her point.

I think I'm about 3 weeks away from the start of everything. I'm still given time to recover from the stomach surgery, which is excellent news. I'm getting better every day and ready to try again (take 2) to switch from Oxycodone to Tylenol. I'm very mobile and I'm also good about my morning and/or afternoon naps so I think I'm doing the right things to heal. It still hurts a lot, though it's VERY painful to cough or (the worst) sneeze. As my aunt Jo said, I've got a single long line across my chest but there are all kinds of stitches, etc INSIDE my body. The oncologist said there's lots of nerve-ending damage with any surgery, and that's likely part of the pain issue. Hey, is there a better excuse not to do sit-ups or run a marathon? I suggest not! :)

So, that's where we are now. I'm going off to my bike ramp-like bed now. Please remember to keep me in your thoughts and share the news or this website with whomever you wish. Remember the rules-- straightforward and no whispering!

:) Jen

posted by Jen at 1:13 AM