So where were we? When I left off, it was Wednesday, the 27th of February, and I had a plan! I was going to the hematologist the next day, and if my hemo number was low again, that was all right, because he was going to give me more blood, and I was going to have the capsule scan on Friday. It was under control! All was going to go smoothly from that point on!
The best laid plans of mice and men…
- Wednesday evening, 2/27:
- I rise from the computer to head upstairs to bed and feel dizzy and faint. I immediately lie down on the floor and summon Eric. We decide our best bet is to page the hematologist and ask what to do. He tells me to rest and drink water for an hour, then call him back to tell him how I’m feeling. An hour later, I’m standing and feeling better, so we decide that I’ll keep my morning appointment, bright and early, to check my hemo and (likely) transfuse.
- I feel steady enough to drive, not faint, but a little tired. I go to the lab. When they call my name to head to the back, I feel slightly dizzy upon standing. She barely gets the needle out of my arm before I go (new word I’ve added to my vocab!) diaphoretic: I faint, and my whole body breaks out into sweats and chills. It’s the worst yet; I can’t come around easily at all, and I feel wretched as the world spins and seemingly dozens of faces swim around me, taking off my sweat-soaked shirt and lifting me onto a stretcher. My blood pressure top number is in the 50s; my hemo is 7.5. I’m wheeled through the hospital hallways to the ER, where they readmit me and give me two more bags of blood. (Total to date: 9 bags.)
- 2/28, evening:
- The hematologist comes to see me and tells me that two bags of blood has brought my hemo up to…8. I’m obviously actively bleeding, which means that an angiogram has a chance to catch and fix the problem! I frantically offer to do mountain climbers and burpees until they take me down, just to keep the bleeding going; he gives me Ativan and tells me to calm down, that we’re not sending me home this time until we have a fix. I’m taken to angio. They find…nothing.
- The hematologist, bless him, is done. He tells me this has gone on way too long, that I’m too young and too healthy for anybody to play around with my health like this any longer. He puts out phone calls to everybody, and it becomes a bidding war for who thinks they can fix me fastest: the GI doctor at St Luke’s in Milwaukee, the surgeon at the current hospital, or, if neither of those guys will be able to get to me within a day or so, the staff at a third hospital in Milwaukee. The GI at St. Luke’s speaks up first, and I’m taken by ambulance there. By the time they find me a bed, unfortunately, it’s too late to start the capsule endoscopy, so it’s set for the next day.
- I swallow a capsule, slightly wider but shorter than a fish oil capsule, that blinks blue light at me. I have leads placed on my chest, and I’m given a small messenger bag holding a recorder. That’s all I do for the day: digest a camera and pray. That evening, the recorder is removed and shuttled to the lab for the doctor to read the next day.
- The doctor tells me that the capsule data wasn’t quite as clear as he would have liked, in that it showed no bleeding, but it did show some small lesions in the first part of my small intestine. We schedule me for the double balloon endoscopy the next day (his schedule is already booked for the rest of that day). I spend the rest of the night fretting about general anesthesia, which is probably a mask for my greater terror that this procedure, too, would be a bust.
- The procedure is set for early afternoon. I’m going stir and worry-crazy, so the hospitalist gives instructions that I’m to be allowed to do what I want. I take a couple of walks to the hospital’s “Healing Garden.” The first time, I simply walk around reading the memorial stones, getting over my self-pity by reminding myself about how much easier my struggles are than others’. The second time, just before the procedure, I’m in the garden for only a couple of minutes when I hear great belly laughs from a doctor entering the garden. Apparently, twice a week, he leads Laughter Therapy in the garden! He draws in me and an art therapist named Gel, and for about fifteen minutes, we laugh our way through affirmations and exercises in peace. It’s the most awesome thing ever; I leave feeling far more at peace than when I entered. As I leave, a staff member calls out to me; they’re waiting for me at my room to take me to the procedure. For all my worries about the anesthesia, I don’t remember a thing after the Versed is put into my IV.
- 3/4, evening:
- I wake in the recovery room and am wheeled back to my room. I don’t see the doctor – it’s late, and he had many more patients after me – but the nurse reads his notes from the computer to me, and he says that there was fresh bleeding! He cauterized many small ulcerations, and he feels confident!
- The doctor confirms that he does feel confident that he fixed the problem. He tattooed a mark on the intestine at the point where he had to stop scoping from the top, in case the problem rearises (he doesn’t have reason to think it will) and he needs to scope from below. Interestingly, the ulcers that he cauterized looked like they could have come from NSAID overuse; I haven’t taken many NSAIDS at all for quite some time, but he couldn’t tell how old they are. It’s possible these could have come from when I was mega-training a while back and was using ibuprofen regularly. I had stopped doing that, and now I’m even more determined never to do it again! He told me I was fine to go home, that I should have weekly hemo checks for a month, and then come back for a final check. I’m free! And I CAN RUN!
And that’s where we stand! I’m feeling good, though a bit shell-shocked at going from a situation where I was mostly lying in a quiet hospital room and resting all day to my regular schedule of managing crazy kids, the dog, and the house. I was feeling pretty beat by eight last night! But that’ll get better as I adjust and make more blood (it can take a week to ten days to manufacture enough blood to go up a single point). I’m meeting with my coach again today, and I have no delusions about how fast I’ll be able to jump back into training. Even if I wanted to, I haven’t run in a month; going back to where I was would be a recipe for a running injury. Slow and steady will be the key phrase, being patient with myself.
But I’m back. I’m Back!