Life on Hold

Photo by Mickewazowski

Photo by Micke Wazowski

Six weeks ago, my beautiful daughter Indra was born. Two weeks later, I got a sore throat. I connected these events. One doesn’t get a lot of sleep with a newborn, nor is there a chance for exercise or healthy eating. I went to urgent care and was treated for strep. The sore throat didn’t get better. And I developed weird symptoms. My heart would pound with the smallest effort. I started waking up with my pupils dilated; everything would look like it was zigzagging around, and it would take an hour for my vision to improve. Writing became difficult because everything was just so bright. Plus, I was just so worn out all the time.

I was referred to an ear, nose and throat specialist. “You look anemic as hell,” he said. I tried to explain that I had always had a fair complexion, but he didn’t buy it. He told me I needed to have blood work done straightaway. It came back the same day, and he gave me a call. “Your numbers are all over the place. I’m walking your records up to a hematologist in my building. He’s going to call you and give you instructions. I know this has been going on for a bit, but you need immediate medical attention.” Two days later, I was in the hematologist’s office, getting bone marrow taken from my pelvic bone. I was also told that I needed a blood transfusion that afternoon. That was last Thursday. Over the 4th of July weekend, I started to feel better as a result of the transfusion.

Two days later, I was in the hematologist’s office, getting bone marrow taken from my pelvic bone. I was also told that I needed a blood transfusion that afternoon.

On Monday, the results of the bone marrow biopsy were in. I was diagnosed with aplastic anemia, which essentially means that my bone marrow has stopped working (the doctors don’t know why yet). More specifically, it doesn’t produce enough red blood cells, which oxygenate my body (imagine a 100-year-old man trying to walk up stairs); it doesn’t produce enough white blood cells, which power my immune system (think Bubble Boy); and it doesn’t produce enough platelets, which are responsible for clotting my blood (see: that one scene from Monty Python and the Holy Grail). The recommended course of treatment for aplastic anemia is a bone marrow transplant.

I was just starting to wrap my head around this when I developed a fever on Tuesday evening. In my condition, fever = go to hospital. I was admitted on Tuesday and pumped full of antibiotics via an IV and given another transfusion. There were tubes running out of both arms. My immune system was hovering right above zero, so I was in an isolated room where my nurses had to wear masks for my protection. Happily, my numbers improved a little and my fever went away, so I was able to go home yesterday with oral prophylactics (not the latex variety) to prevent further infection.

"We're setting up an IV so we can pump this urine directly into you."

“We’re setting up an IV so we can pump this urine directly into you.”

In the midst of all this, my doctors have been working to schedule me for a transplant. After initially thinking I would be getting this done at UC Davis, I found out on Friday that it will be done at UCLA. The date and specifics depend on how long it takes to find a tissue match. It could be within a few weeks, or it could take months. Sooner is better. The longer it takes, the more transfusions I will probably need to keep me going. If my body gets too accustomed to transfusions, it may complicate the transplant (see: Tobias Fünke). On the other hand, it happens all the time that people need tons of transfusions as they wait for the big transplant. If I need ‘em, I need ‘em.

The goal of the transplant is that the donor’s stem cells go to work in my body and head over to the bone marrow to fix things. It is potentially curative, but it is not without issues. To prevent these, I’ll receive a big dose of chemotherapy before the transplant to suppress my immune system and increase the likelihood that the stem cells will be accepted by my body. I’ll likely be in the hospital for a month after the transplant to handle any complications that arise. After that, I may even need to stay in the LA area for several months to further monitor my recovery. Essentially, Trisha and I are putting life on hold until I get better—and that will take awhile. There is no convenient way to come down with a rare bone marrow disorder.

Of course, this happens to people all the time—people with varying abilities to handle it. To be honest, I’m not worried about the medical side of things. In my opinion, my prognosis is good. I’m otherwise healthy (which is funny to say), I’m in a good state mentally, and I have the support of family and friends. I’m also blessed to have recently brought a little person into this world who makes me just want to stay here forever. Meanwhile, family and friends are fundraising for me, which I appreciate because I can’t really do much paid work at the moment. Most clients aren’t big fans of assurances such as “I’ll have it to you by Wednesday—unless my hemoglobin level drops or I have to take a 5-hour nap.”

I’m blessed to have recently brought a little person into this world who makes me just want to stay here forever.

There are those who get sick, however, who don’t have the luxury of putting their lives on hold. Their family and friends aren’t able to financially or physically support them, and so they continue to work, continue to stay up late so their kids can have hot meals and clean laundry, and continue to get sicker. I keep coming back to this thought as I sit here in my beautiful home with my beautiful wife and daughter, and it makes it impossible to feel sorry for myself. All things considered, I have it pretty good.

16 Comments Life on Hold

  1. Josan

    Sorry to here about this Jeff. Having a child puts everything into perspective and is its own form of good medicine. I’m praying that you stay in good spirits and strong for a speedy recovery. Love peace brother!

    Reply
  2. Debra Olsson

    Jeff—I’m so supporting you with this. Anything you need, let me know. I’ll do what I can in many ways.
    The two of you are lovely treasures and we will do whatever it takes.
    Big hugs, kisses, and love.

    Reply
  3. Diane

    I am so sorry you are going through this. I wish you were going to be at UCDavis. Your family would be welcome to use our house in Sutter Creek indefinitely.

    Reply
    1. Jeff

      Thanks, Diane! I wish things were a bit closer too, but I’m confident that I’ll get the care I need wherever I have to go.

      Reply
  4. Kelly Shannon

    Jeff,
    You have whole cheering section of Scott/Shannon cousins who are here for you! We love you and know that though it may take some time you will be completely healthy soon. I just know it!

    Love, Kelly

    Reply
  5. Wendy

    Jeff,
    I am so sorry to hear about this. What a weirdo thing to have happen!
    Congrats on your new joy.
    Sending prayers and love your way.
    Wendy

    Reply
  6. Dorothy

    Hi Jeff, sorry you are not feeling well, I am praying for you and your family to keep your strength and peace, wishing you a quick recovery.

    Reply
  7. Terri Hock

    Jeff,

    Congratulations to you both! A baby girl is such a joy <3

    I am so sorry to hear of your illness, our best positive thoughts are with you.

    Where are your friends/family raising money (gofundme?), we would like to donate.

    Best to you and yours –
    Terri

    Reply
  8. Solomon

    Hi Jeff,

    Be strong and courageous. Trust in God for life in its fullness! He is with you. Quick recovery.

    Reply

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