Of cancer…..
Of worries……
Of anxiety…..
To do whatever I want for the rest of my long life!
Thank you, thank you, thank you.
Amidst the whirl of the season, the shadow of this scan tomorrow was crammed to the back of my mind. But in the last lazy lost week, sitting home with a cold, wanting to stay busy but just lacking the energy to do much, I’ve been a little tweaked out.
sigh.
Anyhow, I just would love some hugs or prayers or whatever between now and Wednesday morning, when I should get the thumbs-up from my doc. Really. It’s going to be good news. But still…
tick. tick. tick. tick.
T-minus 18 days until my next scan. And so much to look forward to between now and then! Christmas parties….gifts to wrap….feasts to cook….cards to send…..twinkling lights at which to gaze. But tonight, I can’t sleep, and I have spent the last hour Googling post-stem-cell transplant blogs, and I keep coming across sites that have been abandoned because the bloggers have died. Seriously. I know better than to fall into the late-night-google trap. I’ve been here before, but I’m out of Ativan and Peter’s out with his geek buddies and, well, I’m feeling dark.
you are
mankind’s energy,
a miracle often admired,
the will to live itself.
mankind’s energy,
a miracle often admired,
the will to live itself.
–Pablo Neruda, Ode to Bread
Six loaves of Vermont Sourdough.
Three Sesame Semolina.
Three Fig Pine Nut.
Two Pumpernickle.
Two French Country.
Two Sweet Potato Walnut.
One Whole Wheat Polenta.
And a CLE-HE-HEAR SCA-HA-HA-HAN.
Thank you to everyone who has been sending good mojo and sharing hugs. The weight of the world is off of my shoulders, and I am flying high.
Ahhhhhhhh.
Admission: I’ve been in therapy since last October, working through some of the stuff that goes along with being a cancer patient. And I’ve learned a lot, including accessing chapters-worth of healthy coping skills that were somehow missing from my user’s manual.
I’ve put all of them to use over the past two weeks or so, as I approached my first PET scan since the transplant. Visualizing Dr. Spira giving me the good news. Keeping busy. Exercising. Minimizing googling “post-transplant relapse”. But yesterday, the day before my appointment, I just didn’t feel like using coping skills. I just wanted to freak out. Because I’m 35 years old with two tiny kids and a joyful life and a circle of warm, fun friends and a husband I adore and lots of ideas about a rich and engaged future and I have had two bouts with cancer and been through such crap and done 9 rounds of serious, serious chemo and 28 days of radiation and a f’ing stem cell transplant and lost my hair twice and crapped myself in pain and already am pretty sure I’ll end up with some sort of secondary cancer induced by all of this poisonous treatment in 10 or 20 years, best case, and called in every favor I’ve ever been owed and relied on the kindness and generosity of my friends to get through it and am just starting to give back and I have this nagging cough that won’t go away and I know I’ve fired my two anti-cancer torpedoes and if I relapse now there’s not a lot of hope for a cure and I’ll just spend the rest of my life in some sort of treatment and it is just not fair.
So yesterday I let the crazies win.
My options were to go an a major bender, to Xanex myself into oblivion, to devour mountains of food, to pick up a pack of Marlboro Lights and go for it, or to indulge in some seriously compulsive behavior. I went with the compulsive behavior, went to the store for 20 pounds of bread flour, and started making sourdough breads.
Right now my countertops are groaning under the weight of loaves rising, starters multiplying, soakers soaking. Vermont sourdough. French country boule. Sweet potato walnut batards. Whole wheat polenta loaves. Sesame semolina. Something with figs….still working on that one. Rye. All wild-yeast raised! There’s a thin coat of flour on every flat surface of the first floor. It’s nutty. But seriously, if you have issues, knead some dough. It works.
Anyhow. Crazies have won. I showed up for my scan at 8 am this morning (having fed the starter and taken 4 loaves out of the fridge, where they’ve been retarding overnight), waited for an hour, and then learned that the scan camera was down. So I’m home, waiting for a call from the radiology practice, twitching like a meth addict, and getting ready to bake.
Anyone want some bread?
–Jen
Here it is, the end of July, and the end of the Great Stem Cell Transplant Adventure of 2009. I’m really not feeling remotely “patienty” anymore; I’m pretty much just going about my business. There are the occasional energy crashes, but who doesn’t have those? I’m having such a good time with the kids, and have planned a way-too-kidcentric August full of pool days, road trips, and berry-picking outings.
Basically, there’s nothing to report from Cancerland. I hear it is nice there, this time of year, but I’m not looking to go back any time soon.
I have a scan in late September, and I’ll probably post about that, but for now, the cancer fight is won, and accordingly, the blog is likely to be a bit quiet.
Thanks for reading, all these long months, and for posting comments, sending email, and sending positive energy my way. Cancer is a team sport, and I am incredibly grateful for all of you choosing to be on my team.
Love, Jen
Ahhh.
Done.
I have officially completed the treatment protocol.
I got my gold star today…my counts are steady and climbing, my energy is slowly returning, and I feel good. I’ve been sent back to my regular oncologist for normal remission monitoring. I’m not a transplant patient anymore; now I am a survivor.
My friends, I just can’t tell you how good I feel. After an extended illness or period of discomfort, feeling neutral, or even a little healthy, feels so, so good. So good. So very good. I appreciate the not-sick so, so much.
Yesterday included a stop at the transplant clinic, where I learned that my white count is a little low, my red count is still low but moving in the right direction, and that I have platelets to spare. All is well. I was dismissed until my next visit, the all-important 30-day checkup, after which all of my infection and behavior controls are lifted, and I am officially discharged from the transplant program.
Life I love you.
I am still tired, but I’m getting a handle on the ebb and flow of energy through the day. And I’m doing a lot…today, for example, I got up with the kids and got them fed, dressed and dropped at Sewusen’s. I went to the farmer’s market for the first tomatoes of the season (although, they don’t have that intoxicating scent yet…might be a few weeks away, still), did two loads of laundry, baked homemade burger buns, spent some time with Ginna, picked up the kids, and went to Pizza Thursday, our block’s weekly outdoor pizza-beer-and-juice-box soiree. Yes, I watched a few Cold Case reruns, and crashed at the end of the pizza party, but for a girl 24 days off a stem cell transplant, I’m doing just fine.
Right now I’m dappled and drowsy and ready for sleep, but it was time for an update, and it feels so good to have good news.
Love you all-
Jen
* Last night, as I was trying to fall asleep, I was contemplating the 59th Street Bridge Song, and got all caught up in the line “Got no deeds to do, no promises to keep” and how that state was making Paul Simon feel groovy, while a generation or so earlier, it was the state of having promises to keep that broke the spell of the frozen woods, taught by high school American Lit teachers as a symbol of suicidal ideation, for Robert Frost. Interesting. What does it all mean?
An update from the purgatory between sickness and health. I feel pretty good…sometimes. And other times, I’m so overwhelmed with fatigue that I can hardly stand up. I haven’t figured out how to handle the rhythm of my day yet, nor how to manage my finite supply of energy without completely crashing.
Luckily Peter and my sister Suzy, the angelic helper o’ the week, have been really patient with me, stepping right in to help when things go south. But I’m frustrated. I feel good enough to have “big” ideas about what I want to do in a day but not enough gas in the tank to make it happen. It is normal, expected, la la la, but still, frustrating as hell when you are in the middle of something and have to bail. And these somethings are pretty low-key….making the bed, picking up new flip-flops for the kids, prepping dinner. I watch a lot of Cold Case these days. A lot.
Tomorrow, it is back to the clinic after two days off, so we’ll see where my red cell count is. Red cells are one of the keys to overcoming fatigue. I’m also hoping to be cleared for restaurants and driving, but, I don’t know. I’m not sure I should be driving yet. Hrm. Maybe I’ll just be cleared for Peter to drive me to a restaurant.
My kingdom for a glass of really cold sauvignon blanc.
Love, Jen
Nothing but good news to share here. My white count is actually above the normal range….I’m bursting with immune response right now. The first few generations of white cells post-transplant are not as effective as later ones, though, so I still have lots of infection controls in place, but I’ve been cleared to eat well-washed raw fruits and vegetables, and to dead head (but not weed) my garden. Red counts are lagging but steady. Platelets are well over transfusion levels and racing towards normalcy.
My wonderful nurse Kim pulled my catheter this morning, so no more tubes hanging from my body….I’m back down to the number of orafices I was born with. You can’t imagine how great that is.
I’m really looking forward to the weekend at home. The lack of red cells means that I’m still ridiculously low energy, but I do just fine as long as I can sit and chat with people. We have a parade of helpers with the kids all weekend, and my sister Suzy arrives Sunday to help out next week.
Life is good these days. I’m happy as a clam in this incarnation as a slow-moving version of myself.
Love, Jen
