Tuesday, May 31, 2011
Monday, May 30, 2011
Tuesday, May 24, 2011
Monday, May 23, 2011
When the diagnosis of testicular cancer, even late state, was given, it came with the addendum 'If you had to pick a cancer, you picked the right kind. This is so curable'. And in the beginning of this all that was a beacon of hope - 95% cure rates over all stages.
Of course the actual cure rates varied by stage - 100% for stage 1, less as the disease progressed and a little less for nonseminoma vs seminoma - but hey, he picked the right one ... right?
And that was something to hold onto - hope for the cure. Chances were good - 95%! Even with his late stage, large metastasis and type of nonseminoma all still looked good (and still does, don't get me wrong on this part). Hey - this is what Lance Armstrong had, right?
But somehow, the words ‘That type is so curable’ became hurtful, almost insulting.
Because Kel went through the 4 cycles of chemo – BEP, the new and improved cure! And there was a ~30% chance that he wouldn’t be done after the chemo and might need surgery, but the chance of no long responding and needing more chemo before looking at surgery never came up.
And so now hearing that it is so curable is like a slap in the face, because he is not yet cured. It’s like hearing he did something wrong … because otherwise he should be done and past this already, right?
Come on Kel, it’s so curable … why aren’t you cured yet?
He and I were talking about that the other night, how for some reason that was hurtful to us both. It’s like disregarding his cancer because there is no question – he will be cured.
And his chances are still great, but they are no longer the 95%. Now it is a ‘the expected outcome is a cure’, but no more numbers. And I don’t know if he really wants me to look into chances here. I don’t know if information is knowledge, or ignorance is bliss. Sometimes I wish I was a little more ignorant on this all.
Why couldn’t it be a disease I don’t know well, because then I wouldn’t know too much and worry too much? For me, ignorance would be bliss. But Kel claims he wants to know more, so I will find out that the 3-4% overall mortality increases given his diagnosis, lack of full response, and etc.
On the upside, he is feeling a LOT better now, almost a week post Neulasta and the extreme bone pain. The pain side effect from the first cycle of the new chemo is some fatigue this week, but of course it all should start again next week, so this only kind-of-tired part will be around only for a short time.
The upcoming schedule: Kel has bloodwork on Friday (I just re-scheduled it today so that the biomarker results would be in by the next appointment and the best decision could be made for the second cycle, or not), Butch and Rachel (Kel’s dad and sister) come into town on Saturday and stay through the following weekend, the follow-up appt with the oncologist is Tuesday afternoon and we will learn when/if the second cycle starts then.
We fully expect a marked decrease in the biomarkers since he asked for them to be examined while he was still in the hospital for cycle 1 of this new stuff, and one of the two #’s already decreased, but those #s will really be what makes Kel more confident and feel better (a decrease, of course). So Tuesday 5/31 is the day!
It sux that hope became hurt when Kel didn’t follow the prescribed norm, when his response to chemo fell short of a cure, and when these few months began to drag out to more than half a year. But such is life, and you have to work with what is thrown your way, so I choose to take this curve ball and hit it out the park, make it a home run (does that metaphor even work? I soooo don’t know much about baseball).
I toggle between hurt and hope, between fear and wishing for ignorance. Yesterday’s birthday went so well that, at least for tonight, I am grabbing a hold of hope and ‘hoping’ it sticks through my dreams.
Hopeful dreams for all,
Sunday, May 22, 2011
Friday, May 20, 2011
Wednesday, May 18, 2011
Sunday, May 15, 2011
That is the theory anyway about how a Garbage Plate from Nick Tahou's in Rochester, NY might help a cancer patient.
Warning: This is a vent. I have been stewing for a few days and now that I am stuck on a plane for a few hours going home to see my boys I am stewing more and need/want to get this out. This is not about Kel or cancer, per se, just about how ‘stuck in their world view’ I have recently found a former friend to be.
Background: Before the newest of a series of cancer diagnoses, Kel and I were on Nutrisystem together and doing very well. We had each lost ~20 lbs in 8 or so weeks and were proud. His diet, of course, went out the window because eating 1400 calories a day of veggies and NS meals just doesn’t help the psyche when dealing with cancer. Comfort food does.
I did ok for the next few months. I don’t have the willpower to stay on NS alone, but I managed to lose a little more, provided my father wasn’t in town (see notes about the ridiculous deliciousness of ca-pie-kes.) But I am losing ground, and with the most recent bouts of chemo and knowing there is more therapy, I am reverting to comfort food and chocolate-y chip cookie goodness.
Nothing wrong with that, I know.
Not something to focus on now, I know.
But at the same time, I don’t want to undo the good pre-cancer … I kind of don’t want cancer to win my weight loss battle, ya know?
Cutting to the chase: I have a friend (mostly virtual/online, although we did meet a few years ago with a slew of other women going through similar non-cancer related stuff) who is a fitness buff. She has been through a lot and perseveres and I mainly find her attitude and motivation … well, motivating. So I reached out and asked this person for motivation (man, I need another word here – 3 times in 2 sentences? Oy) not for working out but for help with willpower to not eat cookies and just do better.
Her response? Cookies don’t help with stress (but wine does) – lift a barbell. Ummm, ok, but missing the point.
Now, I do believe that she has no idea what the source of worry and stress is in my life, and that is fine – I don’t expect everyone to follow my every move throughout life. I am not that special or noteworthy … I only expect most people to follow me. Just kidding.
Ok, so I wrote something back publically and then sent a private note explaining that between the teaching and working, David, the new upcoming job, wrapping up the current job and …. oh, yeah, that pesky cancer-crap, that increasing workout time wasn’t in the cards. I get to teach a self-defense seminar now and then, and maybe after the semester is over I can get to the dojo once a month to hit things, but overall, increasing beyond some walks – to quote GW, Sr – wouldn’t be prudent at this juncture. However, I can control eating better. Then I again asked, if she had the time, for some
motivation (ok, seriously going to thesaurus another word … how about inspiration or incentive) inspiration to help keep me on my toes.
And I get … nothing. Nothing for days. Not even a baloney, full of platitude, I didn’t know about Kel, I am so sorry. Nada. Actually, I specifically get ignored and see notes about ‘if you aren’t willing to change your life for healthy then I can’t help you’, not specifically about me, really, but still there.
So, I de-friended said person, and stew. And vent. And stew. And with nothing to do on a plane (except write an exam in a minute) I prep a blog about it.
I feel better now, thanks.
Report about Kel: I don’t know, actually. I have been out of town since he started this chemo cycle. I checked in on him each day and got his report and my father’s report, but I really know nothing. He sounded ok yesterday, terrible on Friday, and ok on Saturday. He is sleeping a lot, which is good. He will be infused through late Monday night and should be released to go home on Tuesday. If/when he goes into work this week will depend on the post-chemo days.
The sux for today/the past few days is vented about above, but for more:
Not being in town for Kel’s first cycle with this no chemo was not fun for me. Being in Rochester was nice especially to see family and friends that ARE family, and although I didn’t make it onto the UR campus for a trip down nostalgia lane, the meeting went well (including my talk which went REALLY well). However, I was not a happy camper having to call to hear how home was going.
The next trip I take will be on an off-chemo week, and I will give myself less of a guilt-trip.
Yeah, right, who am I kidding. I will still guilt myself. It’s genetic – I learned it from my mother, and her mother and my father’s mother … although they really sent other’s on guilt trips, not so much themselves. Hmmmm… I will have to work on that.
(It is now many hours later than I wrote this, so I will write a second blog about Kel now)