Monthly Archives: October 2013
For the past two weeks I’ve been wearing my orthopedic boot all hours of the day except for sleeping (which is a lot of my hours, BTW) but finally now I’m off the crutches. Jeffrey borrowed a set from work for me to use because it was terribly painful for me to put any weight at all on my right foot. This has been me for the last two weeks. Click the link for the video:
This evening after work my best blonde friend took me to OSU for a X-ray of my pelvic lower back type area and a MRI of my ankle. I’ve had many MRIs done over the last two years and today’s may have been the most uncomfortable. Really, it’s a deadlock between what went down this evening and the MRI I had immediately following my breast cancer diagnosis. That one is done face-down with your boobs hanging between two round cut-outs in the table. It was also my first one so just as terrifying as it was uncomfortable. For the ankle MRI my weak and atrophied leg and ankle were strapped into the compartment while I was flat on my back with my other leg out straight. This position pulled my legs tight and stretched my hamstrings to the point where my muscles started cramping. It wasn’t charlie horse bad but it was enough to cause tears to stream from the outside edges of my eyes down to the headphones covering my ears. I swear the tears had nothing to do with Sarah Bareilles playing on the streaming radio.
It will be just a couple days until hear the status of my bone situation. I’ve been feeling less pain for the last few days and now I’m hoping I will have a chance to get stronger again without fractures.
Second video of the day:
As my dad used to say, “it’s all over but the crying.” Two hospital visits in two days. This isn’t even close to being a record but I’m supposed to be getting better. I got x-rays, I got phone calls from doctors, I got fitted for an orthopedic boot, I got 3 prescriptions for pain pills and I cancelled our long anticipated trip to California for our friend’s wedding. I remember when the date was announced that I promised to be there as long as I was well enough. I’m not well enough.
I have a new fracture. That makes a total of 5 since transplant. This one comes with a boot provided by my orthopedic surgeon. This one is the most painful and most difficult to deal with so far because it’s on my ankle bone. The calcaneous bone. I cant put any weight on that foot. I need to be taken care of again. I was so close to getting back to normal. The doctor says we have to cancel the flight. She says I’m at high risk for blood clots and she wouldn’t be able to sleep at night if I got on that plane. She is usually lenient and fair with what I’m allowed to do because she believes in preserving quality of life following transplant because she knows that we have to enjoy what we have for as long as we have it. My life, or anyone’s really, could be over with one tiny change in cell mutation. We have no control over this. I have to trust my doctor. We were able to transfer our tickets so I’m hoping for a winter trip to San Diego but it won’t make up for what we are missing out on this weekend.
Back at home I am resting with my foot propped and here I will stay for two weeks awaiting my next appointment with the orthopedic surgeon. I’m terrible at asking people to help me with things. I hate doing it. I just want to get up and do it myself but I can’t. I can’t drive, I can’t walk without crutches and exercise is out. I think this fracture has been there for awhile. Possibly as long as my other fractures. My ankle has been mysteriously swollen and sore for months. I haven’t kept it a secret from the doctors but no one has mentioned to x-ray it because I don’t think they knew what was wrong. I didn’t either because I went to work on my fractured ankle on Tuesday. Part-way into the day I realized that pain pills weren’t covering it and I should probably call. They got me in for an x-ray immediately.
As shitty as this all is I have been reminded several times that this time last year I was in ICU for a sepsis infection due to pancreatitis. I was very sick and possibly dying. I didn’t die although many people have told me that they thought I would. I had a breathing mask because I refused intubation and I was not physically able to sit up in bed or roll over. It could have been the end but I didn’t know it at the time. This is just an ankle. It is fixable. It’s part of the snowball of effects that have been occurring following the treatments that saved my life.
This past weekend was great for our family. Jeffrey took both kids to the Renaissance Festival. This is home. Sword fighting!
Here’s my new boot. It’s not nearly as hot as the Cole Haan riding boots I got for my birthday.
My big swollen fractured ankle:
Day + 265
Most recent numbers:
WBC 4.5 – 11.0 K/uL: 4.9
RBC 3.8 – 5.1 M/uL: 3.21
Platelets 150 – 400 K/uL: 354!!!
I haven’t been avoiding blogging exactly. I’ve been blogging continuously in my head. It’s just the longer I take to put it down in words the more I have to say. Because the longer I wait, more things happen. It’s October. My birthday has passed. Another year older. A year has passed of which I have little memory. Is it psychological self preservation that causes the memory loss or is it just purely chemical from the chemo and other various meds? I’m not sure but I do know that I grieve the loss of this past year. It’s just gone and I did nothing but try not to die. I technically no longer have cancer. And there has been no cancer found in my body for over a year now. But I’m still reeling from the effects. The list of my physical conditions is overwhelming. I have a husband who takes care of everything for us including the worrying. He turns my vague memories into stories by telling me of things that have happened over the last year that I don’t remember. Some are funny but most are terrifying. I’m not sure how either of us have done it.
One foggy memory I have is from one of my recent hospital stays. I remember the dark room with just the bathroom light coming in. Jeffrey was right beside me. I had several vomit receptacles on me, around me and next to me. Instead of using those (since I was crazy, out of my mind sick) I leaned over and puked off the side of the bed and onto the floor. My sweet husband gets paper towels and starts to clean it up. I immediately feel regret and sadness that he has to do this. It sucks and yet he is there with me every time. He said that he doesn’t mind the vomit clean up because a hot blonde nurse came in to give me a sponge bath. All I remember of this is the smell of soap and the feel of bubbles on my legs. Jeffrey says it was way more involved than that.
Since my last blog post it has been up and down. It hard for me to keep perspective when I thought I would be better by now. I know that I am still considered fresh out of transplant but I’m frustrated with trying to get back to normal and often failing. It seems like every time I start to get better and I start to think about the future and getting stronger there is something that comes along and knocks me down and I have to start over again. I’m still trying to get over the effects from the steroids. My kidneys have checked out fine. My lungs have also passed all their tests. My blood counts are normal or close to normal. The doctor thought I had GVHD in my intestines and on my legs but I’m doing okay and haven’t needed meds.
I have permanent damage to my hips but thankfully I have little pain due to the avascular necrosis. I do have moderate pain in my joints but the cause is so far undetermined. In addition to the rib and sacral fractures I also had a spinal fracture. That has mostly healed with rest. With all this damage my orthopedic surgeon sent me for a bone density scan in addition to repeat MRIs. I was told that I have the bones of a 70 year old woman due to damage from radiation and chemo. I was given an IV treatment to help build my bones. This med is called Zometa and is often used with cancer patients. I was told that side effects were minimal.
The next morning I woke up with severe pain in my bones and joints. It was so bad that all I could do was wake Jeff up with my voice and ask him to get me pain pills. He obliged and also brought the thermometer. My temp was 102.6. I texted the doctor even though it was early morning. She called me back immediately and said to go to the ER because the clinic was not yet open and I couldn’t wait. Once again we called Grandma to babysit, packed a couple things and headed to OSU medical center emergency department. When the new James cancer hospital is open at OSU there will be a separate ER for cancer patients. The general ER is frustrating for us because they are scared of me and sometimes over-react. The good news is that we never wait. I have a VIP ticket and always get right in to triage and get a room immediately.
They ran all the standard tests including blood cultures and chest x-ray. The ER doc went immediately to worst case scenario and threw out words like “neutropenic” and “sepsis”. I’ve been both neutropenic and septic and I knew it was neither of those. The fever was brought down with Tylenol and it was gone after 2 days. It took a 3 day stay in the hospital for them to determine it was the medication that caused the fever and not an infection and let me go home.
Although my body is still trying to recover from this summer’s steroid dosages and I may have a touch of joint GVHD, I am having a great time being back at work. My co-workers are all supportive even though most don’t know my full story and my students are amazing. My memory is weak in some areas but I amaze myself on how easy it was to fall back into my role of Speech Therapist. I’m still good at my job and I still love it. I may have to sleep until noon on days following my work days but it is worth it.
Today’s theme song:
“And it’s hard to dance with the devil on your back”