Saturday, March 30, 2013

On break from CTCL worries -- till April 1

Weird post-cardy photo (overuse of the sharpen mask):
Bob and I in Indiana 4-5 years ago
Bob's Cutaneous T-Cell Lymphoma is still an enigma to me. I know lymphoma is the "C" word (scary), but when you read about treatment the focus seems to be almost entirely on keeping the skin healthy -- so it is a dermatological problem too. It is  ideally treated by a team  of oncologists and dermatologists. The course is unpredictable -- some people go for more than ten years, some survive two years or less.

Getting answers
On April 1 we're going down to UPenn to meet with the specialists. Hopefully they will stage the disease and have some treatments to propose. Bob is hoping they'll just want to continue the light treatments, but since he still has significant symptoms, I'm thinking they'll want to do more.

"Sorry, I'm on break"
After a few weeks of dark thoughts, I've taken a break from worrying. Initial tests indicate Bob does not have the most aggressive form of CTCL, and that is an enormous relief. The other type of CTCL encompasses a wide range of symptoms and outcomes. I don't know how afraid to be. This has been a pleasant few weeks, not knowing, and enjoying time with Bob. Looking forward to Rolex more than ever.

The thing about cancer
And the thing about cancer, is, it's not what it used to be. At age 50, it seems almost like more people I know have had it than not. I learned that 75 percent of households will find themselves caring for a cancer patient at some point during their lives. One in two men, and one in three women, will develop it. Where I work, there is always someone dealing with it, and recovering from it, and usually they get better and get on with their life. In my personal life, ditto.

  • My mom was diagnosed with breast cancer (over ten years ago) on the same day my close co-worker was diagnosed with breast cancer. 
  • The husband of a close friend of mine was diagnosed with prostate cancer just a few days before Bob was.   
  • When I met the boarder who owns Harv's turnout partner, she mentioned that she is currently in chemo. 
  • Both my parents are cancer survivors. 
  • I lost a friend to pancreatic cancer last year after a ten year battle. 
I'm sure everyone my age has a similar list.

The good news is, we have gotten good at dealing with it. It is often more of a chronic condition than a life-ender.

Financial factoids

Some interesting stats I've uncovered.
  • Average out of pocket expenses for insurance holders with lymphoma are between $1200 and 1800/month (expenses vary dramatically according to type of cancer). 
  • The financial burden of cancer hits hardest on the middle class – people too well off for programs that cover the poor but unable to afford what cancer care often costs, spend their savings getting treatment.
  • The costs of unreimbursed medical care, even for people who have health insurance, caused 62 percent of personal bankruptcies in 2007, according to a study by Harvard researchers. 
I'm thinking I'll do a health update for Bob on Saturdays, when appropriate. I don't want this to be a cancer blog but I figure a lot of readers will be interested and/or care. Thanks all...


  1. I'll keep you guys both in my thoughts :) Xx

  2. Keeping my fingers crossed for you guys. Bob will be in good hands @ UPenn. My dad is a cancer researcher and did his post-doc there; he has nothing but great things to say about them, so I'm sure Bob will get the best available care/treatment.

    This may be WAY out there, but I wonder if spirulina would have any effect on his itchiness? I take it for seasonal skin allergies and it's the ONLY thing has cured my itchiness. I also have a friend who gives it to her App who used to scratch himself raw/bloody every year even when on Dex. It certainly couldn't hurt--it's a superfood and would be healthy even if it didn't help with itching. Just thought I'd throw it out there. :-D

  3. Sending all the best thoughts to Bob and you. I know this is a "horse" blog but personally I enjoy reading about the lives of the people whose blogs I read. Sharing medical stories can be so helpful if someone needs resources or even just knowing someone else lived through something. So glad you can take a break knowing he's not dealing with the worst case scenario.

  4. I am SO glad you mentioned how much different cancer is today than even five years ago. Medical research has done a lot and cancer treatments and therapies have come a long way. I know Bob is in good hands--he's got wonderful doctors and ... YOU!! ;o)

  5. Indeed I care, so I will look for updates.

    My parents both died from cancer and my brother died from skin cancer, so I am all too aware. I had surgery for uterine cancer myself and so far, so good. I, like you, have known far too many people with this disease.

    The good thing is that cancer therapies and treatments are advancing at lightning pace on all fronts. It is one of the ironic benefits of the disease's being so prevalent.

    Once again, I will wish you both well with the expectation of good news from the new doctor regarding an effective treatment.

  6. I recently spoke with my former chiropractor who has been in complete remission from aggressive, stage IV melanoma for over 5 years ... and he did not take a drop of chemotherapy or do any radiation. Upon doing further research, I have heard of a few others that have had a lot of luck with the same technique. Not easy, but I always offer it to people as "food for thought."

  7. Interested and care. Hope you enjoyed this holiday weekend.

  8. I've lost 4 family members to cancers, from brain to cervical. Plus my last grandparent (grandmother) is dying from an incurable form of lymphoma. And know six that survived, and that's only the people that have told me. I'm only 20 years old.

    On a happier note, love your blog. Happy Easter.

  9. Stacey: Read Anti-Cancer, by Dr. David Servan-Schreiber. Also I'd recommend reading at I am a cancer survivor. As far as money goes, look into Little Red Door.


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