The Assertive Cancer Patient

What IS C. diff.?

Full name: colostridium difficile

For those of you who have been wondering what all the fuss is about, here are some authoritative links:

Mayo Clinic

Medline Plus

Centers for Disease Control

C. diff. even has its own Web site:

cdifficile.org

Here are some of my recent posts about C. diff. You can find more under these categories: Germs and Hospitals.

Another cancer blogger who has been battling C. diff. along with cancer, Ann at But Doctor I Hate Pink.

 

@ Jeanne Sather 2012. 

Rehab

On Monday, I moved from the hospital to a rehab center in the south end. The idea is that I need to build some physical strength, which is certainly true, but I'm bored and depressed at the same time.

This is hard. Possibly the hardest thing I have ever done. 

My greatest need is to find somewhere acceptable to live, and--I may be dreaming--I e-mailed some Seattle friends and neighbors this morning to see if anyone has any ideas. I would like to find someone with a house to rent me a room. I would still need Younger Son and my friends to help me with errands and things like that ... 

More on all of this later.

Do I feel lost? Yes. 

 

@ Jeanne Sather 2011. 

 

Just When Did I Have Surgery? September 20

Some of my doctors tell me my short-term memory loss will wear off.

I hope so, because even with my notes I'm having trouble keeping track of things and putting together a timeline for my friends and readers. Whenever I go to the hospital, or even to a doctor's appointment, I take a small spiral notebook, pen, and my laptop, a MacBook. I take notes and send e-mails off and on all day long.

Right now, I'm talking about the fact that I had surgery on my spine on Tuesday, September 20. Before that I had a spinal tap--bad enough, I assure you, but since the results were negative (which is GOOD--no cancer cells in the fluid around my spinal cord), we can just forget about that one.

I had a second spinal tap at the time of the vertebroplasty--"Why not, since we are knocking her out anyway?" seemed to be the consensus around my hospital bed--and I agreed to it. I had some bone biopsies at the same time, for the same reason, and those also showed no cancer. 

I have gathered copies of some medical records, and have notes to myself about the other records I need to collect, and then I'll be able to post more information about what really happened when I was in the "chamber of horrors" (small Halloween joke) at Northwest Hospital.

My biggest priority is to work on the brain-damage and balance issues. Yes, I do have some information about this.

If you have a similar problem, please e-mail me and we can compare notes. I am already in touch with one woman in the UK whose brain tumors were treated with gamma knife and she has after effects very similiar to mine.

I've been sharing her info with my doctors here, but haven't shared much with her yet--my apologies. You have been near the top of my list, but the list hasn't been moving because of the various crises that surround me these days. 

I'll be posting about this topic as I get confirmation on a couple of things and also as I talk more with my doctors. And as I keep collecting specialists. (Especially, Dr. Chamberlain and the surgeon/neurologist--Treadway??--he wants me to see after he (Dr. C) has reviewed six discs worth of MRIs and CTs of my brain and spine. 

I will need some rehab, perhaps. I don't mind that as long as I can do it at home. I've started a bit, gently, on my own. 

Dr. Lee wanted me to go straight from the hospital after my failed vertebroplasty--two weeks there, with no fresh air at all, and no time with my dog--to a residential rehab center. He was thinking an additional two to three weeks in residential rehab, but I refused. 

Laurie and Monica--two of the three women I used to consider my closest friends in Seattle--joined Dr. Lee in trying to persuade me to go straight to rehab. Never mind that neither of them would have agreed --for themselves--to four to five weeks in an institution.

A couple more about my two weeks in the hospital--I took a lot of notes, handwritten mostly, and some on my laptop--I have drafts for my blog, but again they don't seem very funny now that I'm home. 

A bottle of pain meds disappeared.

The staff could never get it straight whether or not they were to collect a sample from every BM that I had, or not. (It's bad enough having people measure your urine output, but when they are running around with little jars of your other waste product, well, what can I say? Not funny.)

The House

Citi seems to be trying to wait me out. That may work, but then again, it may not. I don't have the mental bandwidth to throw much energy at this right now, but I will get there, including posting some of the typical hate mail that comes in whenever I stand up for myself. Why do I want to post this? Maybe it's like releasing it out into the world? I don't know. 

Why should you folks have to read it? Thinking about this one ... 

Ribbons

On Sunday several friends gathered over here to brainstorm about October. More about that day by day as the month goes on. One good thing about being in the hospital for late September and the first few days of October--not too many pink ribbons around.

Actually, that is surprising. Some hospitals are covered in the things this time of year. 

I went looking for some pink M&Ms today and didn't find any! Has anyone else spotted them, or has the company finally realized just how offensive this product is? Let me know if you see any. 

More soon,   Jeanne

© Jeanne Sather 2011. 

 

 

The Seattle Times Article: 'Never Out of the Woods'

One of the more chronically overused cliches in print and broadcast news is "ironically." 

After earning my master's degree in journalism at the University of California at Berkeley, I never use it, in any of its forms. 

Or not until now.

Plenty more cliches come to mind here, including, "There's always a first time." Feel free to add appropriate cliches in the comments box below, but please don't point out that I don't have the little mark over the "e" in "cliche," unless you'd like to teach me the html for it.

Back on Topic

The word "ironic" springs to mind because the page one story about the T-Drug and me includes the most beautiful, glowing photos of me--with Constant, of course, and one more with Ella, a young friend--taken in recent history. 

The story was published on September 21, two days after I was admitted to NW Hospital (now part of the University of Washington Medical Center). 

I didn't leave the hospital for 13 or 14 days, depending on how you count. My doctor didn't want me to leave at all, not really, he wanted to send me directly to an in-patient rehab center. More on that later. 

Obviously, I refused. And I played a joke on him just before my release that is too good not to share, but that also needs to wait for another post. I need to move on to Citi and saving my house from foreclosure. 

The greatest irony, to my mind, is in the final two paragraphs of Carol Ostrom's story:

Sather knows her health still is precarious and can change day to day.

"I'm never out of the woods," she said. Yet, her first T-DM1 treatment in Seattle buoyed her with energy last week. "I'm in remission on this drug, the first time in years," she said. "I'm in this bubble of happiness."

See: Seattle Times  Breast cancer blogger gets drugs closer to patients

@ Jeanne Sather 2011.