La La How The Life Goes On

Archive for August 2013

I dislike baseball.

There. I said it. I find it BEYOND boring in every conceivable way. Which is not to say that I do not love the Boston Red Sox. Because I do. Because my marriage depends upon it. I personally can tell you nothing about any of the players, scores, anything. But I can tell you if the Sox are winning a particular game because I have turned over my Twitter feed to All Things Red Sox so I can update him in the car as he is driving. (This is love). I can tell you if the Sox are winning overall because my husband exudes a serenity created by nothing else. I can tell you if the Sox are being choke artists because I can hear him groaning at and lecturing the TV downstairs after I have gone to bed. I try to sit up with him, to show solidarity, to do my political wife head nods as he says something wise and insightful about the Designated Hitter but turns out I’m actually a distraction. Yes, because I’m All That. But also because I apparently talk incessantly through the game. About the players’ ill-advised facial hair, outdated coiffures, and the fans’ often curious choices of haberdashery.  Who knew this was unwelcome participation in America’s Game?! I did. Which is why everybody wins when I go to bed. BabyDaddy gets to see his game without me going all Tim Gunn on the Red Sox organization. I get to blog and read and engage in what the BBDD derisively calls my “jumbles” but which are actually exceedingly challenging logic puzzles to which I am addicted. Listen, it takes a smart girl to figure out that JimBob bought the ginger ale for $5.99 at the Speedway while Rita purchased the root beer for $3.99 at the Gas N’ Sip.

It also takes a smart girl to know when to use a baseball analogy. I am not that girl. But I will sum up this summer, and perhaps most of 2013 with the word “rebuilding.” You know, the shitty baseball team decides to “rebuild” either by going all in on big league names or by trading away the names in order to develop the younger talent that will hopefully pay off in the future. Folks, I have no real idea whether either or both of those ideas have merit. But I do know that rebuilding is what I am doing.

You may recall I was put back on prednisone last fall. Achieved my maximum density lo about May this year, up 19 uncomfortable and unsightly pounds, most of them on my face. Not to mention the Prednisone Baby of 12 months gestation I continue to tote around in one three inch wide section of my belly. No joke. It’s totally TMI, but picture this: a normal-looking lower pelvis, just as if I were my old weight. Then right above it: a SHELF! Yes! A shelf of fat! But not fat like you’ve seen it. Not jiggly pudgy flubba blubba. No. Semi-solid, spherical-like-an-actual-spare-tire, weird looking fat shelf. Shit you not. Then, above that, a little bit of my own personal honestly-earned flubba blubba, 1 pound max. Then my boobs. Also 1 pound max. Hah! I keed. They’re at least 2.

It’s a bizarre, bizarre way to look. It’s like when those celebrity sites show you how so and so’s boobs are fake because they stand up even when she is lying down? That’s my prednisone fat. It does not move. It does not shake. It does not answer to any mortal. It sits on my midriff. As a shelf. Defying your laws of gravity, foolish earthlings! It is your corticosteroid overlord and you shall submit or suffer the consequences. Mwuahahahahahahha!

My point being: I decided to stop being depressed about my Fat Shelf with Bonus Face Expansion and decided to go All In for the Summer of ’13. I got braces. I got my previously raggedy-looking split ends cut off. I tried a new hair color that was a spectacular failure until finding this one (which-zomg!–looks much like my hair color pre-transplant. I’m nothing if not original). I just decided, in the immortal and wise words of Abraham Lincoln: “Fuck it.” If you are going to be 20 pounds overweight, you might as well get braces, right? (Especially after you see the plaster mold of your Scottish teeth and the theme from Deliverance starts to play in your head). You might as well go shorter/darker than expected just to see what will happen, right? Because it’s not like you are going to look MORE ridiculous, right?  NOW is the time to do that stuff, because why the hell not.

So I’m now on two new meds. One of which I intentionally did not blog about because I got very superstitious about it and felt like every time I mentioned it I was pulling the hair of The Fates, who were going to repay my insolence with spectacular drug failure…and more prednisone.  It’s called Interleukin2, and it is an old drug doing new things for the good patients of Dana Farber. I’m starting to get superstitious shpilkis even as I write this, so I’ll just say that it seems to be promising and perhaps my long national prednisone nightmare MAY come to a close in the next 365 days. Which will be just in time for me to unleash my Osmond smile on the world. With my appropriate length and color hair framing said smile in the middle of my appropriately-sized face.  The day and hour I am 6 months free of GVHD I will be getting a Fraxel peel from my awesome DF dermatologist. Because gaining and losing 19 pounds every two years is HELL on the skin, folks. My face has been so stretched so many times my wrinkles have wrinkles. And their neighbors The Jowls are moving in ever so sneakily. So trust that it will all be getting dealt with as soon as it is medically safe to do so.

The second drug is Forteo, which builds bone. Actually builds bone. It also builds osteosarcoma if taken in large enough amounts, so that’s the downside: bone cancer. But short term: I’m all about getting some bone built. What these two drugs have in common are that they are both injections and they both have TERRIBLE initial side effects until your body adjusts. Which is why my Grand Rebuilding almost came to a grinding halt in July when the side effects of IL2 kicked in while we were on vacation. I was barfing, unable to eat, bone pain, muscle weakness, every totally unpleasant chemo-like side effect you can name, I had it. AT a beach house. On the water. I was inside, rocking myself on the floor begging God to put me out of my misery. Upside: the kids had a great time! And at least I wasn’t at home attempting to do the daily grind while feeling like death. I remember telling the Baby Daddy that I hadn’t felt this profoundly sick since the chemo for the transplant–during which time I was hospitalized and being delivered IV morphine like it was my only job. Not the case this July. Every single evening when it was time to give myself the shot I spent 10 minutes telling myself not to do it, don’t take it, call the dr and tell him you’re out, you can’t do it. It’s too much. You haven’t slept in 3 days. You haven’t eaten anything but bananas and saltines in 3 days. Just tell him you can’t do it. You’ll try something else. Another drug will work, right? Right? Right?  And then, between those last two “rights?” I jammed in the needle. In the name of rebuilding.

Then the Forteo. Bone pain, raging headaches and almost-comical involuntary full-body muscle spasms. Every night. For 4 hours post-injection. After the first night I was back on the IL2 script: you can’t do this. It is too much. You have a life to live, kids to take care of, you can’t be all spasming like a crazy person! Then, I jammed in the needle. In the name of rebuilding.

If you are in the midst of rebuilding, I wish you courage and luck and some thoughts from (not a member of the Red Sox organization) Yogi Berra that have guided me:

When you come to a fork in the road, take it.

90% of the game is half mental.

It ain’t over till it’s over.



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