Gimme a break, doc
I got the results from last week's CT scan, and Fabian (my enlarged lymph node) is the same as before, but this time my doctor mentioned that my ovaries are "decreasing." What the F?!? First he said "increasing" and mentioned "lesion" but then he said both were decreasing, which was better than increasing. I throw my hands up. My doctor is determined to scare the hell out of me. At least he didn't mention the cysts on my liver this time. I know they're still there, but he didn't point out a size differential or anything. Grrrrrr. Wait, why did he said "lesion" in relation to my ovaries? Honestly--I don't want to know.
I got home from my appointment to find he had called while I was on my way home, and he wanted me to page him. I checked the clock--6:20. I left his office at 5pm and he called me at 6pm. I had a mild heart attack and couldn't say anything, I just looked at my mother. All I could think of was that he misread my CT scan. Then my Aunt Jo or my mother mentioned that not all of my bloodwork was back when I'd seen him, so likely he was calling about my blood. Okay, but that's STILL bad because he's never called me about my blood. Or about anything before.
And when he called me back 10 minutes later (an eternity!) he said my bloodwork had come back with an abnormally low blood sugar count, and unless I was feeling dizzy and lightheaded and just didn't mention it to him, he was planning on letting the lab know they miscalculated something. Relief. Relief. Breathe again...
I talked to him about my overwhelming anxiety and the fact that I'm starting to get insomnia again after a few weeks of normal sleep patterns. He acknowledged that my life is anxiety-filled and with good reason, "you've been through an awful lot" which is the understatement of the year. But its like I've got more anxiety now that I'm feeling better. When I was sick, I didn't have the energy. He gave me a script for ambien. I can join the legions of people eating and driving in their sleep!
I hired an athletic trainer today to get some personal training for a few hours next week. I was caught doing something half-right with a free weight and decided it would be for the best. His parting words to me were "I'll tire you out (which anyone can do, frankly) but I won't kill you." I said, "hey, if chemotherapy didn't kill me, I don't think YOU can." But between you and me, working out for an hour will probably do me in. I already take a nap after working out 1/2 hour or walking for 45 min. And as I told my mother and my doctor, if I could SLEEP AT NIGHT maybe I wouldn't need to take my NAPS!
Well, time to take my night-time pills and hit the hay. My tea is getting cold...
Some updates
My roommate from the cancer survivors weekend died yesterday. She was so sick, even at the retreat, that once she had to go back to chemo it was just too much for her. I was amazed she was at the weekened because along with everything else, she couldn't walk very well and she couldn't eat. There were times when I would wake up in the middle of the night and look over at her in the other bed and just kind of check to see that she was breathing. I only knew her for a few days, but I could almost sense that she wouldn't make it much longer. I've thought about her a lot today since I found out, and I just know she's in a better place. Her earth-bound suffering was just cruel.
I was emailing one of the guys from the weekend before we knew about Megan, and he told me he was recently hit by a car while he was riding his bicycle. We had an interesting "I am invincible" discussion. Having cancer forces you to look death in the face. And having walked away feels like cheating death. I feel like if God was going to take me anytime soon he had the perfect opportunity and decided its not my time yet. Rafi and I both agreed we think we can go play in traffic now and be perfectly fine. I could announce on plane trips: "It's okay everyone, we're going to be fine because I recently beat cancer."
I put together a little cancer scrapbook yesterday, with quotes from this blog, quotes from famous authors and some cancer humor along with pictures of flowers that I've taken over the past year. I hadn't intended to put anything together, but it was really impressed upon us at the survivors weekend that you need to have something like it. We even had 2 different "book making" arts & crafts clinics. Okay, okay, I'll make the damn book. :) I'm very proud of it and it's not too emotional or long-winded. Just right.
I was discharged (or as I keep saying, "dismissed") from physical therapy last week so I've been walking and going to the gym. You should see me with the free weights. Its all I can do to keep going at some of these exercises. My aunt Jo asked how heavy the weights were. I smiled, "three whole pounds!" I'm not strong enough to do the machines yet. But I can do the ones for legs and hopefully if I keep at it I'll be in good shape to return to work in a month. I still take naps every day, so I'm not sure how much use I'll be, but getting back to routine has to be a good thing.
Genetic Testing
I had genetic testing yesterday at Dana Farber. I didn't really have high hopes for it, so I'm not really dissapointed that they can't figure out why I got stomach cancer. There are no obvious links between anyone else in my extended family. For example, just because my grandfather had prostate cancer doesn't mean it was inevitable that I would get stomach cancer. There are certain genetic links-- like if you get thyroid cancer you might end up with breast cancer later. They weren't able to make any connections for me, and told me they might never be able to.
I joined their database by signing away my life and giving a few blood samples. They use it for research, obviously, and try to make connections between certain genes and certain types of cancer. And should any links be established in the future, they would contact me. Again, I find this highly unlikely, but you never know.
Stomach cancer is very rare in the United States, and is in fact declining (doctors don't know why) but the type of cancer I had is actually increasing. And doctors don't know why this is either.
I'm going to have another endoscopy in June, but my gastroenterologist said she would take tons of biopsies. I begged to be knocked out and she agreed. Oh, and I'm lucky enough to be scheduled for a colonoscopy at the same time. Wa-hoo! What do I care, I won't be awake anyway. Plus, as she said, if they find anything that will lead them down another path. Hm, no kidding.
Some Writings I Relate To
Author Unknown, Treatment is OverMy cancer treatment is over for now
Shouldn't I feel exuberant?
Well, I don't
I feel a confusing mixture of feelings:
Fatigued from the ordeal
Anxious about returning to work
Sad that the recovery period has ended
Grateful that I am healthy
Scared that I don't have the energy to perform
Grieving the loss of my uterus and fertility
Outwards, I may appear happy and positive
But inside I am crying
Just getting through took all my strength and courage
And I am left depleted
I now need a vacation to recover from recovering.
Juanita Jones, Illness in the InstituteIt was very painful, and it was sad. It was sad to lose a piece of your body—a piece of my body. ….I would just think about it, oh, it was there, now its not. Like, where did it go? I called up my surgeon and said, “What did you do with it?” She said, “well, we froze it.” And I said, “Oh, well, if you were going to throw it away, I’d want it. I was thinking I would have a little burial for it in the backyard. But I just wanted to make sure that they didn’t throw it away.
Arthur Frank, At the Will of the BodyOne day my body broke down, forcing me to ask, in fear and frustration, what’s happening to me? Becoming ill is asking that question. The problem is that as soon as the body forces the question upon the mind, the medical profession answers by naming a disease. The answer is useful for practicing medicine, but medicine has its limits.
Medicine has done well with my body, and I am grateful. But doing with the body is only part of what needs to be done for the person. What happens when my body breaks down happens not just to that body but also to my life, which is lived in that body. When the body breaks down, so does the life. Even when medicine can fix the body, that doesn’t always put the life back together again.
Robert F Murphy, The Body SilentPeople in good health take their lot, and their bodies, for granted; they can see, hear, eat, make love, and breathe because they have working organs that can do all those things. These organs, and the body itself, are among the foundations upon which we build our sense of who and what we are, and they are the instruments through which we grapple with and create reality. …Illness negates [a] lack of awareness of the body in guiding our thoughts and actions. The body no longer can be taken for granted, implicit and axiomatic, for it has become a problem. It no longer is the subject of unconscious assumption, but the object of conscious thought.
Jennifer Schmidt, The State of ThingsThe smooth, pale plane of my stomach is now divided by the Atchison and Topeka. My surgical incision scar looks like a railroad track constructed by drunken workmen.
The surgeon called it a “dogs leg cut”, likening it to the crooked hind quarters of a mutt. It stretches from my left side to my right side, dividing me in half like a magicians assistant.
Down the center of my chest are four tiny tattoos—souvenirs from radiation. I’ve been essentially separated into quadrants like graph paper. I’ve been quartered like a chicken.
I asked my surgeon to sign his work but he politely refused. My oncologist called it a “calling card” from Dr. Osteen. Its okay he didn't sign it though. I’m not likely to forget.
Survivor
I'm actually at the Park Plaza hotel now, nearing the end of the "Survivors Weekend". We're at tower level with free internet access, etc so I thought I'd take a moment to let you know that though I was nervous about coming I had a lot of fun. Its really amazing that we all feel the same way-- ignored. For most of us, this weekend was the first time we'd met someone our age (30-40 year olds). I ate dinner across from a Dana Farber doctor (guest speaker tomorrow) who said that we're about 8% of the population with cancer. 15% is juvenille, 70% is over 65. We're the lost generation.
This is supposed to be the kick off weekend for a greater presence at Dana Farber. We shouldn't be ignored as much, and though we're not getting our own waiting room any time soon, at least they're trying to put together support groups and working groups, etc etc.
We shared our cancer stories today and it was quite emotional. Yesterday was all about without/before cancer, and today was all about CANCER. We joked tonight about cancer "flare-ups" and getting things we want by playing the cancer card. Chemobrain and being unable to read. And get this... Most women were TOLD their periods would stop. I seemed to be the only one in the room who didn't get the memo as it was a shock to me. Too graphic for some of you? Sorry. :) We did a lot of sharing.
Anyway the group is back so I'm off to join. The cruise sets off tomorrow and I hope you all have a wonderful week. I will check back in next monday.
Cheers!
