Thank you all so much for your comments on my article at empowerHER. The fact that you took the time to comment is every bit as heartwarming as the applause I wrote about was. Now, on to your regularly scheduled posting.
I expected to recover from surgery like a rock star, and that's exactly what I did. Lots of narcotics, sleeping until noon, hanging out with groupies.
Well, maybe not that last part.
I started to feel guilty. Very kind people were bringing me delicious foods so I didn't have to cook, and while it did hurt to stand up, (due to the fact that they seem to have sewn the top of my stomach to the bottom of it, leaving me with the posture of a hunchback) I was feeling so good I knew I could have managed a meal if I'd had to.
I guess I wasn't thinking that I shouldn't be on my feet, even if I could be.
What, me? Rest?
I had heard that people who have liver resections feel exhaustion like nothing else can cause; that they sleep for hours and days and never feel rested, and that doing something simple like taking a shower takes all their energy for the day.
I scoffed. That's for other people, not for a diva like me.
Once the pain was gone (on day three) I felt fine. I was sure I would be going back to work long before my due date of December 5th. I was thinking somebody should draw a comic book about me. I could be a super hero called Recovery Woman. Nothing could keep me down! In the past, Recovery Woman had gone furniture shopping four days after an appendectomy and had scars that appeared healed almost before leaving the hospital. Even though this was the biggest surgery I'd ever have, I seemed to be following my pattern - miraculous recovery. As people would come by to check on me, I was almost embarrassed at how well I was doing.
Then, two weeks after surgery, I crashed. I suddenly had difficulty breathing Not acute, not dangerous, just very, very uncomfortable. I felt very short of breath all the time, like you feel after you blow up balloons, only the party never ends. The exhaustion hit me, and I slept through alarm clocks - not one alarm clock, and not two, but three. I slept like a teenage boy who has an essay due. I slept like a cat in a sun spot on a windy fall day. I slept like Snow White after she bit the apple. My sleep was impenetrable by any outside force. Combine that with my shortness of breath, and my life suddenly became about struggle rather than recovery.
I had my three week post-op with my surgeon, and told him about my shortness of breath. He did a chest x-ray, which came back "pristine." We both then assumed I was anemic and my oncologist would check for that. I soon began chemo again, and told my oncologist about it. My blood tests were good, and he became alarmed and thought perhaps it was a clot, and so ordered an immediate angiogram, and I wasn't allowed to leave until the results came back.
Unfortunately, that meant no diagnosis.
A couple of days ago, the pain became acute. It almost feels like I have appendicitis again, only I don't have an appendix anymore, and truthfully, this is much milder. So far. It's very low in my abdomen, possibly colon, but it's on both sides. I just have to live with it and hope it goes away as part of the healing process. If this pain doesn't go away by next week though, I am going to have to address it.
Aside from this sudden pain, something as strenuous as reading is exhausting and leaves me breathless and dizzy. I occasionally have to take a big, deep and painful breath, just to get back on track. Talking on the phone - actually, talking, in general, is very difficult. You can't talk and blow up balloons at the same time.
And, when it rains.......My shoulder had begun hurting me again, and so I went back for another cortisone shot (yes, it's still frozen, and yes, it likely be for the rest of my life at this point - but with cortisone shots I can get pain relief and 75% of my movement back). I told the PA about the shortness of breath, and he suggested that maybe the diaphragm was inflamed from the surgery. The diaphragm and liver are right next to each other, and whether that can happen I don't know; whether it would have shown up on the angiogram or the x-ray, I also don't know. It makes sense to a layman, maybe it wouldn't to a doctor. But, the acute pain is in the lower abdomen - very low. So, who knows?
And, because no post by me would be complete without mentioning pee, I seem to have a constant bladder infection - minus the infection part. Friends have suggested interstitial cystitis, which makes sense, and I suppose could be causing this lower abdominal pain. Or not.
So, here I sit in front of my computer, post-surgery. Breathless, exhausted, needing constant naps, yelping in pain when I pee, needing to pee all day, lower abdomen burning and aching and stabbing me if I move, especially in the classic "put your knee to your chest" position.
All those leftover pain meds from healing so fast? They are almost gone.
After talking to my doctor last week, I decided to take an extra month off work, because I'm not good to anybody right now. Hopefully, at the very least, I will at least have more energy by January, when I have no choice but to go back or starve. But, I hope that I feel much better, especially whatever is going on in my lower abdomen.
Aside from all that, I'm grateful I made it through surgery and I've got this chance to get healthy. Nobody promised me it would be easy, and as it turns out, it isn't. I'm sure whatever is going on can all be fixed. It'll just mean more tests, more waiting rooms, more poking. Pain or no, I think I'll wait until after the holiday.
So, I guess I healed like a rock star - an aging, overdone, used up rock star.
Post stem cell transplant Day 62
2 weeks ago