I Am Not Dead

February 3, 2014 at 9:07 pm (Uncategorized)

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I am not dead. It’s just felt that way for many of the days since you last heard from me, way back in October. I apologize for doing such a lousy job of writing even the barest of updates. But life here in Chronic Town has been damn hard for the past few months.

I’ve been in and out—and then in and then out and then in and out again (it’s like the freaking hokey pokey at times) —of the hospital since my mega-stay in September and October, when I was in the medical clink for 36 out of 40 days, which was when I last updated this blog. My longest stay since then – another 2 full weeks in the hospital – ended last week. In between I’ve had a few shorter stays. Whatever their duration, the hospitalizations are hard on me, hard on Jay, hard on my parents, hard on my friends, and hardest of all on Andrew, my now 10 year old son. “It feels like you’ve only been out of the hospital for 2 weeks since school started,” he told me the other day.

The reason for this flurry of inpatient care is that my sarcoidosis has been severely flaring. When I can’t see from the disease acting up in my brain, can’t sleep from the pain, and/or can’t eat for days, my local doctor admits me to the hospital. It’s depressing how accustomed we’ve all become to this new routine.

A new chemotherapy protocol is another addition to our lives that we’d rather not have to contend with, but desperate times call for desperate measures—and I’m pretty freaking desperate. On the advice of the sarcoidosis guru, I began a 6-infusion course of “cancer doses” of my old friend/nemesis Cytoxan. (I got lower doses of Cytoxan every-other week for a year from 2009 to 2010). Now I get hit with a whopping amount of Cytoxan every three weeks.

I lost my hair—but luckily not my eyebrows. After being totally bald for a couple of months, my hair follicles gave Cytoxan the middle finger and I am now sporting a patchy crew cut—much to Andrew’s relief. He could deal with a Mom cycling between home and hospital, a Mom throwing up without warning, and a Mom laying in bed for literally weeks at a time, but apparently not a bald mother. “Please put a hat on,” he implored whenever anyone came over or we ventured out.

I know this post reads like a Christmas letter from Chronic Town. Instead of an annual update on the kiddies’ accomplishments, you’ve been treated to news about my hair line and my gastrointestinal workings. But after such a long absence from my blog, I needed to get the broad facts of the past months out there so that I can start writing more regularly again. I’ve missed it and I’ve missed hearing from you. My plan is start posting again, at least weekly, even if it’s just a line or two. When I was stuck in the hospital last week, I remembered my old goal of using this blog to try and make meaning out of chronic illness and build a community for those of us living with chronic illness (or who care about someone with chronic illness). So, how about it? Look for me here again every few days. And I’d love to know how you are all doing. Happy New Year.

14 Comments

  1. Amy said,

    Glad you are home and writing again:). Miss you!

    • Rebecca Stanfel said,

      Thanks Amy!

  2. Rayna said,

    So glad you’re home! Thinking of you!

    • Rebecca Stanfel said,

      Thanks for checking in Rayna! It is very good to be home.

  3. Randy Bekkedahl said,

    So glad you are back, Rebecca. Missed your blogs and your insights. While you were gone my wife’s MS got worse (MRI shows it spreading) yet she still finds energy to take care of me and help take care of my mom. She did get disability, so she no longer works (that’s a story in itself) And I just found out I have something called “lymphadema” in my legs and will have to wear a compression bootie at night for the rest of my life. Wheee! So much fun and excitement! And I had cellulitis and a permanent IV in my arm for 5 weeks before they got the cellulitis under control (MRSA germ).Again, so glad you are back online, I look forward to hearing more from you!

    • Rebecca Stanfel said,

      Hi Randy. I’m so sorry to hear about all the health problems you and your wife are having. I swear there’s something going on–so many people I know are getting sick or sicker. It’s scary and disheartening. Still, it’s good to know you made it through the 5 week IV line (UGH!!) and MRSA (double UGH!!). I had to wear those compression stocking short-term, so my sympathies are with you. But I’m thrilled your wife got disability. I heard it’s such an ordeal, even for those of us that are genuinely disabled or chronically ill. Hang in there, and thanks for checking in.

  4. Kate said,

    I hope that badass cancer dose kills that badass Sarcoidosis!!!!

    • Rebecca Stanfel said,

      Thanks Kate. I am hopeful the badassery of the drugs will do the trick on the badassery of the disease. Hey! I just invented a word! 🙂

  5. Danna said,

    Love to you and your boys. Also, eyebrows are all the chatter — ask Miley!

    • Rebecca Stanfel said,

      Thanks Danna for the good wishes and the pop culture education. 🙂 Why would anyone bleach their eyebrows? Though it does look kind of arty and definitely un-Disney, which I guess was her intent. Still as someone who is proudly clinging to my pale brows, I am chagrined…

  6. carol schaake said,

    BECKY, As long time friends of your parents, we think of you, care, and wonder what’s up. Your positive outlook is special. You, Jay, Andrew and your parents are unique. We love them and you. Keep your spirit.

    • Rebecca Stanfel said,

      Thanks you, Carol! It means a lot to me that you read this and keep us in your thoughts.

  7. nancy m hayes said,

    Good to read you again Rebecca. Take good care.

    • Rebecca Stanfel said,

      Thanks, Nancy. It’s great to hear from you.

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