On the inside.
Yeah, I said it.
My insides look good thanks to a PET scan taken last Friday.
It looks like the tumors have dissipated since the start of my chemotherapy regimen.
For all of you who would have liked to see the visually, the actually scan pictures, and are extremely disappointed I don't have them, feel free to direct your rage to my perfectionist hematologist who refuses to show the scans.
I think showing in imperfect scan, in his world, is like passing in incomplete work, so I just let it go, even though it would be so much cooler to show!
The good thing about my cancer is that, though it comes on quickly, aggressively, and mutates to be resistant to treatment, it goes away very quickly with a new chemotherapy.
The fact that I am cancerless is great news.
It’s great news I have heard before.
It’s great news that is followed by the fact I need more treatment.
I can’t just stop and say “hey, fabulous, good bye cancer. What we did worked!”
No, no, no, not that simple, because due to my history, it is pretty clear it has only worked for now.
Eventually, the tumors will likely come back.
Sorry to be a buzz kill, but I am at an impasse
This occurs everytime I am declared “clean” or “in remission.”
Everybody celebrates. They think it’s the end of my battle.
It is the end of a battle, but I still haven’t won the war.
People start thinking Life is good and I can start recovering to be what I have been wanting to be and do what I have been wanting to do.
Not the case with me.
Not even a little bit.
The chemotherapy y is working (HOORAY!!). That means I could stay on it for another 2 or 3 months and be relatively miserable from all the side effects, comfortable AT HOME.
The other option is I could use one more round (or month) of treatment and pray the spot in my lung has gone away.
No, I haven’t mentioned the spot.
The damn spot that needs to get out, that has caused me so many problems.
It is the spot that was originally thought to be pneumonia or just inflammation. Who knew really? It was up in the air and for grabs by all my diagnosticians.
Turns out, it is probably inflammation. This is probably the worst option, since the problem it is most similar to caused complete respiratory failure and for all my family and friends to be called in to say their last good byes.
Yes, I have a spot like THAT lurking in my lung, causing me shortness of breath.
And people wonder why I kick and scream, turning into an outright bitch when I can’t reach a professional to ease my pain or improve my ability to breath.
If it’s inflammation than I’ll fight inflammation.
I’ll chug some berberis and eat pastas and rices with all my favorite anti-inflammatory herbs since even a small dose of motrin is off the table now that my platelets were low yesterday (36) and I’ve started taking Coumadin, just for a short time, while the kinks (hehe, that’s a dork joke) in my line get worked out.
Hopefully this should fend off any clotting disasters that drag me all over kingdom come for treatment.
Ironically, the Coumadin is set to start working about 26 hours after I start it, just in time to no longer need my medi-port for vancon infusion.
My goal for the week is to learn to love my mediport.
It’s a part of me know. We’re going to have a long, fabulous relationship.
I certainly have never had a patient whose mediport was screwed up so badly that she was left oozing blood from the simple surgery for days until a nurse finally threw a hissy fit.
It was to late for poor patient though, she died from a hospital acquired infection due to the frequent dressing changes to control bleeding from her port site.
I have to forget all those people and patients from the past.
Is it any wonder I’m scared to death.
Ignorance is bliss. I like to pretend I’m ignorant.
Specifically, I’m going to train myself to be submissive to my care team. They are perfect. They are perfect. They are perfect. Maybe if I repeat it enough I won’t know what I do. . . .
All this PET means, is that I still have options (hey, I’ll take it!) and the options are to stay on this treatment for a while to enjoy my time with my family or rush to a donor lymphocyte infusion, which I don’t know much about.
What I do know is that it requires trips to Boston and I will be under Dana Farber’s loving care when I enter into this territory.
I am on a bit of a timeline, X wants treatments done by Christmas. He’s been asking God and Santa, the universe’s two biggest authorities to a six year old.
One more treatment cycle would put me mid October, two more would put me mid-November. If I take the latter I’ll be in active treatment around Christmas time.
If I take the former then I’ll be easing up around Christmas, but I run the risk that if DLI doesn’t work I may have one month less with my family.
That certainly makes decision making complicated.
What I have decided is, as much as I want to proceed with my big ideas on how to save the world and health care reform, I probably won’t.
I have been looking for a 501(C) to hand the idea off to or anybody who would like to administrate it other than me.
I just don’t have the energy to put the TLC into a venture like this.
I have my favorite venture sitting right next to me playing DS and decompressing after school.
I don’t need anymore stress. I don’t want to be dragged in another direction. I'm going to hang out, write my postings and my books (yes, I said it, you didn't think I was giving up all the goods did you?)
With this being said, I’m more likely to move to DLI mid-October.
This may have treatment relatively over by Christmas for Xander’s wish.
I do think God is listening to us, always, watching us. We will always have what we need to survive. It will be provided if I continue to follow my heart and the directions of my dreams.
Thank you so much to those of you who help us.
Keep praying for our Christmas miracle.