I look in the mirror, and I no longer see me.
My face is so bloated. I feel like an orcha, or a puffer fish.
I feel like the fish on “Finding Nemo” or “SpongeBob” that suddenly blows up and floats around uselessly whenever something stressful happens and shocks them.
You may have noticed the lack of pictures of me.
I don’t want evidence of the terrible “moon face” side effect I’m experiencing from the steroids.
It’s a common side effect. It’s the first to hit me.
At first, I looked like a cabbage patch doll. I’d regressed back to my high school days before I’d lost my chipmonk cheeks.
Now, I’m so swollen I look like a face in the moon, hence the name.
It’s from “Cushing’s Syndrome.” I’m cushionoid.
Along with this comes other problems, like extreme weight gain (I’m clocking in at 138 lbs. after two months at 40 mg of prednisone), hairiness (every where, but of course on the face), and a fatty hump back.
Prednisone is not a drug for someone with body image issues.
Silly me, I’m feeling guilty about feeling like this! Is that ridiculous?
I know. I know. I’m entitled to feel how I feel, but with everything else going on my swollen face and lumpy body should be the least of my worries.
But it's not. It's just another inconvenience, another reminder that I'm not healthy, another side effect that requires intervention and monitoring.
Long term steroid use also increases the likelihood of diabetes and erodes bones.
I need to monitor my sugars and get a bone density study soon prior to starting bisphosphonate treatment for my bones. I've all ready started taking Caltrate (calcium and Vt. D).
Prior to any treatment, I was a poster child for osteoporosis- white and small framed. Now I've been menopausal for years (your menstrual cycle regulates the re-oxification, or bone building, in your bodies ladies. It is NOT safe to skip them entirely with birth control).
It's only a matter of time until bones start snapping and humpty dumpty has to be put back together again.
I was okay with these things when the medication fixed my lungs. I'm still okay, because I am still active, just not to the extent I was.
Now I can be pissed about looking alien AND not being able to breathe.
I don’t want to think about how I’m wearing my oxygen around the house again and how the chords present a death trap for Jon who is hobbling on his boot.
Jon never did have surgery.
His ankle was too swollen to visualize. He’ll be in a boot another couple weeks and then go for a follow-up.
Dr. Weiss will repeat an MRI. He may do the surgery at that time.
Big Thank You to Valley Orthopedics who rushed to our rescue, especially Dr. Houde, who has been a personal angel to us.
Unfortunately, they couldn’t manipulate the injury to a complete tear and do the surgery.
This route causes a longer period of impairment.
I am starting treatment tomorrow!
Yes, you heard correctly, TOMORROW.
I met with Dr. Ziggy on Monday to get a feel of Dartmouth. We met in the pharesis room.
Dr. Ziggy is everything a Dr. Ziggy mad scientist should be. He appeared with slightly disheveled hair and crooked bow tie with a toothie smile and Polish accent.
The lab at Dartmouth has been open for a year and a half. They do apharesis on 8 or 9 patients a year.
Apharesis, in general, is a new treatment technique. The studies proving its efficacy are very small, possibly the largest with 60 participants, but Dr. Z is President of the Apheresis Society.
Impressive, yes, but not as impressive as the fact that he included the nurses in my orientation. I LOVE THAT! A Doc who knows his backbone.
The procedure is relatively noninvasive and nonthreatening (or so they tell me, but I've heard that before), meaning I qualify. It's worth trying.
I'm having a central line placed tomorrow.
I have a long, tumultous history with central lines. Prior to my illness, I loved central lines. I loved helping place them in emergency situations so the patient could be revived. I loved the process and sterile technique. I was always offering to assist in their placement or help change the dressings.
I offered to do these things because I knew I could do them without causing infection. My nurse manager even stuck me on a committee on how to reduce central line infections.
As a patient, my relationship with central lines has suffered. Just about every one I have ever had has gotten infected. Some have sent me to the ICU with septicemia.
I'm not looking forward to another.
I have had so many I've lost count. The scars on my neck look like a road map through hell.
But I need one to undergo the procedure. The veins in my arms are not stable enough. A longer line would create too much resistance and render the treatment ineffective.
The line is the part of the procedure I'm dreading most.
After that is placed, I go in for treatment Weds.
Treatment entails being hooked to a brand new, state-of-the-art, made-in-VT, pharesis machine.
The machine withdraws my blood through one catheter and processes it, manipulating the white cells so they no longer attack my organs, and then sends the blood back in through another catheter.
DHMC's machine was purchased about a month ago. I'm, again, a test subject. It is looking good so far. It was estimated the process would take 3-4 hours at first, but the machine may cut it down to as little as 1.5 hours.
It also has helped with maintaining fluid volumes and electrolyte balances in patients.
Due to the blood processing, I need to be very careful around all UV rays for 48 hours after treatment.
I was sent home with sunscreen SPF 100 and aviator glasses. Even some indoor lights could cause a burn.
It's sounding a little like I'm turning into a vampire.
Doing this should stabilize my lungs at their current function. It will not improve them, but it should stop them from getting worse.
My heme doc called it "voodoo" when mom and I met with him to confirm my acceptance of the procedure because there are so few verified cases of success.
But this is what I want. I want my lungs. I want a quality of life. I didn't fight to survive to not be able to live. I'm feeling comfortable with starting.
Well, as comfortable as one can be.
I'll be doing this weds., Thurs., and Friday next week and then twice a week there after indefinitely. At the very least, I'll have treatment once a week a DHMC. I'll be followed by my rockstar heme team there, as well as closely monitored by my pulmonologist and GVHD specialist in Boston.
I'm so fortunate these great minds are willing to communicate and work together on my behalf to treat my body and soul. The Docs are getting in to holistic treatment. I'm impressed.