When I was a kid, Disney was great about playing the same Halloween favorites every October. Mr. Boogedy was one of them, and this clip was one of my favorite parts:
That little "Just kidding!" after every scary "Boogedy boo!" just cracked me up. Today my husband and I were ready to boogedy for my MRI scan, but all we got was a great big "Just kidding!" from the world of scheduling mishaps. I wasn't laughing this time. First, the scheduling coordinator at my oncologists' office had given me the wrong address, so I went through all the effort of getting out of the car and into the wrong building. Then, when we arrived at the right building, we found that through a series of scheduling miscommunications we were not on the schedule at all, a process that took over an hour to sort through before we could finally leave and get breakfast (since I had been fasting, despite not being told to, because I've had enough of these stupid things to know better). So now my MRI is rescheduled for Friday, only when they finally got the orders for it, the orders said general anesthesia instead of conscious sedation, and may not have included the liver scan my oncologist wants, so I have to go through another communication circus to make sure I get the instructions straightened out. Oh joy. And when I get done with the whole big MRI mess on Friday, I'll get to have a couple hours rest and then physical therapy afterward. With all the sedation drugs plus the work-out, at least I can be assured I'll sleep good Friday night.
It's October. As I jokingly told my husband, this is "National There's Only One Kind of Cancer Month." I've got nothing against making people more aware of breast cancer. It's very important for people to get the proper screenings at the proper times to ensure early diagnosis, assuming that science can ever make up its mind about when the proper times and what the proper tests really are. But as a fighter of some other kind of cancer, I can't help but feel a little neglected by the public and more importantly the research community. Where are the billions of dollars for finding out why some people suddenly develop rampant blood vessel tumors in their livers and lungs? Maybe a few of those billions could be spared on the much rarer group of patients whose rampant blood vessel growths shatter their spines, like mine. There have been a few tiny steps towards awareness for EHE. Kris Carr made a documentary about her journey with it that eventually led to a fairly successful Crazy Sexy Cancer media machine, including diets and merchandise and books. On the surface it all feels a little commercialized and showy when I visit her websites, but I think behind the glitz she still holds the goal of improving people's lives and health. Her EHE attacked her liver and lungs, though, the more "common" version of this rare disease, and I think her documentary would have turned out very differently if she'd had to spend the first six months of her film footage on the eight foot journey from bedside to hospital room door. Fighting cancer doesn't seem as crazy sexy when you can't control your bowels, a miniature crane lifts you in a sling from one bed to another because you can't stand or scoot over, and you have screaming panic attacks during your MRI's. Then it's not sexy at all, it's just crazy. I hope that some day I can get more researchers to pay attention to EHE. And in the meantime, I hope that I can get more people to share my realization, and Kris Carr's real message, that life is precious and fragile, that hope is power, and that you don't need an incurable illness to wake you up to the joy of it. You can choose to wake up NOW.
My body is very tired this weekend. It has a right to be. The week in therapy summary is all about big numbers using single-point canes: Tuesday a combined total of around 200ft was walked in four segments; Friday, 267ft was steadily, gingerly stepped in only three segments. And after all that exhaustion, I had to do a few car transfers and a crazy toilet ballet in order to accomplish a visit to my doctor's office and provide a urine sample, which confirmed my suspicions of a developing UTI. I'm incredibly thankful, and proud of myself, that I noticed the symptoms early and avoided my usual pitfall of brushing them off as mild or insignificant, so that for once I got antibiotic without having to make a hurried trip to the ER in agonizing pain with an infection so bad I urinate blood. My history with UTI's has been that they start out mild and friendly, like I felt yesterday, and progress to the ER phase in less than 24 hrs, so it's good that I finally started paying better attention to my subtle symptoms. So I'm resting a lot this weekend. In addition to recuperating from last week's efforts and trying to give the antibiotic time to improve my bladder discomforts, I also need to prepare my body and more importantly my mind for the challenges they will face on Monday. It's time for another MRI, so my oncology team can check on my Epithelioid Hemangioendothelioma of the spine, as well as survey my liver to make sure my EHE hasn't spawned any demonic offspring there. I'm having conscious sedation this time, meaning medications to help me relax and stay calm without full anesthesia, so I don't have to go through the awkward return to consciousness with a tube shoved down my throat, and the resulting soreness that lasts for days. Aside from claustrophobia, it's always frightening to have those big machines look inside my body, and waiting to hear if they found anything dire. I had a dream last week that there had been a metastasis, evidence of the degree to which my subconscious mind worries about it, even if my conscious mind stays focused on rehab and daily life.
At least if the week starts out with an MRI, you know it can only get better from there.
Last week in physical therapy, after my usual workout with the four-point canes, we decided to try standing up and see how my balance was with two single-point canes.
Standing and balancing with them was pretty different from using four-point canes, but it went well, so we tried a little marching in place.
Marching in place, because of the need to artificially arrest your natural forward motion, is actually harder than walking in some ways. So we went ahead and took a few steps. A 10ft and a 12ft walk, which was a pretty exhilarating way to wind up that therapy session. Which of course made me want to top it in therapy this week. So we started today with the four-point canes but instead of walking we went immediately to the ramp, while my legs were good and fresh. We'd been wanting to try the ramp soon anyway, and we knew I wasn't ready to try it on single-points, so it would be a good warm-up before switching canes. Walking up the ramp was extremely challenging muscularly, but walking down the ramp was even harder. You have to really concentrate and trust your muscles to hold back your forward momentum and not buckle or send you stumbling to the bottom. After that hurdle was cleared, we went on to the 2inch curb step to see if I could do that. Stepping is actually much easier than walking on inclines, so that went very smoothly once I forced my mind to trust my legs and take the first step up. Stepping back down again was no problem. With two breakthroughs down in the first 15 minutes of the session, it was time to switch to the single-point canes. I decided to really focus this session on the quality of my walking, particularly the heel-toe motion in my foot, so that my weight would roll into my heel and spread evenly to the rest of my foot instead of clopping my foot down flat. While requiring a lot of concentration to accomplish this correct foot motion, it turned out to be the key to better balance and efficiency, enabling greater distances to be achieved than ever before with the single-point canes. Last week had been 10 and 12; I started today's walking with 30ft, rested, walked 33ft, and rested again. My therapist thought I would want to switch to standing balance exercises at that point, but I was ready for one more walk. The last one was 47ft! I was ecstatic. So was my therapist. And then we did the last few minutes of standing balance just to finish out the allotted time. So it was a day of awesome results and progress, and I feel terrific about it. Who knows what good things Friday's session will bring?
I don't often go in for public speaking. I'm one of those nervous, panicky types who gets clammy hands and sometimes has trouble breathing just from thinking about it. But when the rehab hospital I receive physical therapy from approached me about speaking at a lunch during their celebration of National Rehab Awareness, I couldn't say no. Here was an opportunity to reach out to patients and therapists and other community members and recognize how their efforts have impacted people like me, and to hopefully encourage those facing struggles of their own. Maybe even inspire some people who are just considering careers in medicine and rehabilitation. It represented all that I hoped to accomplish with this blog: to reach out to others, and through my story of rising up, perhaps lift someone else, too. So in that spirit, I share with you today's speech, sweaty palms, bad hair day, and all.
