Chemo-cation

I finished cycle 12 of Xeloda with an increase in Hand-Foot Syndrome but only at the very end of the cycle. I lost three layers of skin on my thumbs and first fingers but they're healing nicely. My tumor markers are still stable!

Dr G said, Oh, I'm hurting you! I reassured him that I was coping but really I think I am getting close to the end of my Xeloda tolerance. 

The dentist says my sore tongue comes from the same side effect. Basically the skin covering my tongue has Hand-Foot Syndrome (!). She could hardly believe that I still have taste buds. 

My new opthalmalogist/surgeon says that 18 months of Abraxane likely caused the cataracts in both eyes. I am having the surgery in January, so I get a three week chemo-cation (plus the week recovering from the first surgery). 

Between eye surgeries I'll have one more Xeloda (round 13) and then we will re-evaluate during my second three week chemo-cation. Dr G wants to add Afinitor to the mix (Xeloda, Avaston, Aromasin, Aredia). I had Afinitor before without much luck and plenty of side effects, but I may be close to the end of what I can tolerate from Xeloda. However, Xeloda has me stable and I do tolerate pain well. (I am sad that I had to learn this about myself, but it's one of the things cancer taught me.) There are plenty more drugs out there plus anything new that comes out of the recent ASCO conference.

Update Monday

I am recovering bit by bit.

The weekend was full of antibiotics and friends. Today I learned that I most likely have two different infections. One is coliform, the bacteria that can cause E. coli. You hear about kids eating hamburgers filled with fecal bacteria. But we all harbor some kind of E. coli and it takes just the right thing to trigger your own body's stuff. I think I got that right.

Dr infectious disease named the second infection in the early morning and I can't remember it now. It had something to do with water/blood bacteria.

I've had more IV antibiotics today but if Friday's and Saturday's cultures come back growing the same thing as Thursday's, I can move to an oral antibiotic and go home. So I hope to be here until tomorrow. As you know, nothing is certain when you're inpatient at the hospital.

Therapists are not like oncologists.

Therapists are not like oncologists.

Imagine an oncologist who has no idea what the latest treatment is. Imagine now that they are trying to cover their butts. "You have cancer, but I have something that works in my patients." "Something that works in your patients?" Even in your distress something seems odd about that statement. "Does it work in all patients or just in yours?" Its one of those questions you think twice about asking an MD because it smacks of sarcasm and hints a possible incompetence. But it is exactly the most rational question.

Of course, of an oncologist you'd not have to ask this question because oncologists are required by law to use the most effective treatment. If they do not do the latest and greatest they can get sued. Into oblivion.

People die of cancer. People generally don't die of bad therapy.

Now imagine your therapists says this... "You've had a stroke but I have something that works in my patients." "Does it work in all patients or just in yours?" There are 2 possible answers:

1. I have a lot of clinical experience, and in my experience it works.

2. Actually, its not ME saying it works in MY patients, but the research says it works in patients with your sequalae (symptoms).

I feel safer with #2.

#1 could have an unspoken "...but I've never really collected data or analyzed data or compared it to a control group or blinded myself during your measurement, or done anything else that science does to make sure that my data is "clean"."

"Does it work in all patients or just in yours?" is really the question, "Is there research that says it works?"

Encourage therapists to have a look at their diploma. It'll say, clear as day "Associate's of applied SCIENCE," "Bachelors of SCIENCE," "Masters of SCIENCE," and so on. The the notion that they base treatment solely on clinical experience is dangerous. One of the biggest determinants of recovery is the therapist sitting in front of you. Do yourself a favor, and do them a favor: Call them on the evidence.

Thanksgiving

I really don't have anything interesting to say about Thanksgiving. You'd think I would, but it seems maudlin to talk about why am I still alive after watching so many friends die of their cancers. So I'm turning over this post to my wonderful husband Rik, who wrote it November 22, 2015 on his Facebook page.

Why I am grateful this Thanksgiving.

Great article from the New York Times today brought it all home. Adding some personal reasons too!

Grateful for Jill being in my life for 21 plus years, and her having the best team of medical care in the world over the last 16 years to manage her Breast Cancer and mets disease, but particularly the last month as she has been hospitalized with two infections, continued chemo, almost finished radiation on four spots and successfully managed Gamma Knife to her brain.

Also grateful for the support of my community of friends, neighbors, and synagogue members who have brought us meals, rides for Jill, company, and of course my colleagues at Roosevelt High for all the support in rides, hugs, good wishes, coffee, coverage of classes for me when needed, and giving me lots of slack, and my students who always are wonderful caring human beings who get that school assignments are not the most important things in life.

See attached photos for Jill in action making the cancer go away!

Jill wears the full gamma knife gear

"What, no second breakfast?!"

And at the conclusion of radiation to four separate spots. That face mask was awful and didn't even look like her.

Saebo in the news...

I'm a fan of one of this blog's advertisers, Saebo. The two guys who started the company are brothers, both occupational therapists. (Find another set of brothers that are both occupational therapists and I'll send you a free copy of my book.) I like the culture that Saebo brings to stroke recovery. Everything they make has a commonsensical perspective engineered in. 

Saebo makes the SaeboStretch. Unlike static splints which hold the hand in a static position, the SaeboStretch allows the fingers to flex when they need to (often to protect the joints of the fingers). The 'Stretch then slowly pushes the fingers back to the desired position. 

Link here.

And, as it turns out, Gabrielle Giffords sports one!

(Read my early take on Giffords recovery here)