Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Monday, July 27, 2009

Jon’s Health Update

For all of you who do not know my husband Jon has Crohn’s Disease.

This is an irritable bowel syndrome that causes severe inflammation within the bowel. When the bowel continues to be inflamed it starts to create ulcers. It can spread

throughout the bowel and if left untreated or inadequately treated long enough will cause diffuse scarring.

This is what happened to Jon years ago. He’d been suffering from abdominal pain for a while to the point he was unable to eat.

He dropped to 160lb on his 6’6” frame.

I joked I was going to film him and ask for donations he looked so malnourished.

Eventually he sought help, and in 2004, he was diagnosed with Crohn’s disease.

Last year in July he underwent a bowel resection to remove the portions of his intestine that had been scarred and would absolutely, 100% never heal, causing him pain.

I wrote about this last August or September in “I Sold My Husband for Health Insurance” (Yes, I’ve almost been blogging a year now!).

I think I may repost that testimonial.

It took a foot long incision over his abdomen and three hundred stitches and sutures to put jonny back together again.

During this period, I was undergoing the LDH study in Boston. Heather was taking care of me.

Xander was with my parents.

Jon was at home on his own. His parents had a previously scheduled vacation.

When we got the results later in the year we were shocked to learn that the resection had removed a carcinoid tumor in his bowel!

Jon had cancer at the ripe old age of twenty-nine, and by some miracle, it was contained, as far as we knew, in the portion of bowel that was removed due to his Crohn’s.

At least, that’s what we thought.

Thank God for Small favors.

We all breathed a sequential sigh of relief and moved on, distracted by my medical problems.

If you didn’t think our situation could get any worse, I’m here to tell you maybe it can.

Jon saw his specialist today who informed him that the carcinoid tumor found a year ago does need to be dealt with.

He could order a PET scan (just like the ones I receive); however, a PET would mistake what may be inflammation due to his Crohn’s disease for Cancer.

This mistake would buy him another colonoscopy.

I bet he is loving those.

My first thought when I heard “PET Scan” was “How are we doing to buy one of those?”

I had visions of submissions, rejections, and resubmittals dancing in my head.

Jon’s specialist at Dartmouth Medical, Dr. Seigal, spoke with a specialist from Norris Cotton (Dartmouth’s Cancer Center) who suggested a urine test that would be more definitive.

I didn’t go to Jon’s appointment. He wanted space. I thought they were discussing some simple medication additions.

Now I wish I went.

I haven’t processed that idea that Jon is having a Colon cancer scare, or even that he had colon cancer. The idea was brought up so lightly by a very skilled doctor and a “resected carcinoid tumor” doesn’t sound that scary after facing down a bone marrow transplant and heading to another.

This is scary. It’s too much to process.

All I know if I have a big, raging headache.

I also know that it’s time to cover our ass. . . . . ets.

We need to see an estate lawyer, pronto, to ensure Xander will be taken care of per our wishes should anything happen to us.

My little text from will just not do.

I feel a big, irritable, cranky mood coming on.

If I get lectured about the short-comings in my personality, such as behaving like a raging bitch or being forgetful, I may just reach my breaking point and show the unlucky person EXACTLY what a raging bitch is.

My shingles has flared up. The child care plan we had hoped for will not be working out and Jon may have cancer.

You’ve all been warned. Tread carefully.

Thankfully, I have a girl’s weekend coming up. I am heading to NYC this weekend with my cousin Steph to visit Colette, Daisy, Laurette, Maggie, and Yanellie.

I need a break from reality. Hill’s going to go hide in Harlem again.


nmorel said...

When it rains it pours... Thinking of you.

Marci Cooke said...

Hill, don't know quite what to say. you guys make my situation tolerable because my husband will be a great father if I don't make it through my transpant. I'm so sorry