Day +421: Here we go again . . .

I have mentioned before that I love roller-coasters, but I am not a fan of the recovery roller-coaster that I am on.  I am now, as of last night, on my third inpatient tour of the hospital this year.

• May: Blood clot in my femoral vein
• July: Fever, weakness, chills, sinus congestion (never found root cause, assumed viral infection)
• September: Fever, profound weakness, full body aches, chills, leg swelling (cause: TBD, suspected GVHD)

When I was released in July, the fever never went away, neither did the fatigue.  My temperature always stayed in the 99-100 range, and my oncologist ran every imaginable, stopping short of a spinal tap (thank God!).    They did find pericardial effusion and a significant reduction in lung function from last year before my bone marrow transplant.  Not the news you want to hear as a runner – or at least one hoping to get back to running after this Leukemia-forced hiatus.

Just a couple of days after my discharge, I was started on photopheresis, a treatment that collects blood from my body, separates the platelets and white blood cells into a bag, injected with a medication, activated by UV light, and then infused back into my body.  The goal of the treatment is to give my T-cells (our disease fighting system) a boost to resolve the graft-vs-host-disease (GVHD) that I have been suffering.  Photopheresis is a gentle treatment, with few to no side effects.  The major benefit is that it allows me to come off of the prednisone, which is typically the first line treatment for GVHD.  I’ve been through two courses of high-dose prednisone, and the side effects have significantly affected me physically (including a 40-pound weight gain), emotionally and mentally.  Though the photopheresis treatment is easy and virtually painless, it further upsets my schedule, as I have to go twice a week for the foreseeable future and it takes 3-4 hours each session.  It also makes me incredibly sensitive to UV rays, so many of you have seen me walking outside with an umbrella in the sun.  I also put sunscreen on every morning and afternoon.

I have to admit, my jovial, positive, strong demeanor has taken a big hit.  I find myself in a place unfamiliar to me . . . one where the glass is half empty, not half full.  I don’t know if I am ever going to do the things I used to, or have the body back that I worked so hard for, or even if I will survive to my five year cancer anniversary.  Statistics show that chronic GVHD is associated with a less-favorable outcome in transplant patients.  And that scares me.  I am just so tired of being sick.  And just when I start to get a little better, something else happens to cut me off at the knees.

I used to go for a run, or lift weights to relieve my stress and work through challenging times.  I don’t have those options right now, and I have to admit, I’ve become a bit of a bitter hermit lately.  I’m trying to pull myself out of it, but just can’t get there.  So I’ve tried to limit the “noise” in my life, and allow myself to do what I need to heal in body… and soul.

As for my current hospital stay, I am still waiting for a lot of test results.  I’ve had a lot of bloodwork done, x-rays, doppler scan, nasal cultures (SO much fun snorting saline and blowing it out my nose into a cup…), etc.  The oncologist believes that this is all caused by graft-vs-host, which for those of you who aren’t familiar, it is when the donor cells attack my cells/body.  The treatment is continuing with the photopheresis, but it is a long process… about three years.  This girl is truly learning to slow down and be patient.  I’ve never been that type, but I am working on it.

I want to take a moment to thank you all for your support, friendship, love and patience (grin).  My ups and downs are not easy to handle, and I know it is often easier to walk away.  I am so glad you’ve stayed on this journey with me.  I won’t make it without you.

Peace and love,

Tammy

Song on my radar tonight:

Wonderful Tonight, Eric Clapton