dukenukem

Warning, this is a bit of a downer.

The last post triggered a couple things I saw today. True, I am a talker, but I also observe.

First thing when I arrived, I noticed a woman a little older than me, on the verge of a serious cry. She only had one sheet of paper, not the full package, so either this was her first visit for chemo or she was getting a blood test. I wanted to reach out to her, but could not intrude. Her husband was with her, but he was stone faced, I think not wanting to acknowledge what might be happening to their lives. I may never see her again, but I didn’t know how to help today.

Then I ran into a woman I knew from church. She has been undergoing treatments for a couple years and things don’t sound good. We agreed that meeting at McDonalds would be a far happier occasion. She laughed when I told her there was another place we could be meeting and agreed the cancer center was a better place.

Last thing I noticed. There are about 14 treatment chairs in the center. This was the first time I was in the oldest group, by a large margin. There was one kid I’d estimate in his 20’s. Say what you want about HIPAA, a center is not set up for privacy. He was scared he would run out of money soon and wanted to talk with a councilor. Many in their 30’s and 40’s. Several men, so not all women. A few in their 50’s. Very few over 60. This is the first time I noticed such a disparity in ages. As much as it sucks to get cancer in my 60’s, I can’t imagine what it must be to get any cancer in your 20’s or 30’s. Cillie, and others, my heart goes out to you. I have kids older than you. If one of them was diagnosed with cancer, I would lose it, completely.

Peace.

Duke

Back in the saddle – for now.

Platelets were 67,000 and WBC was 6.6 – not great, but good enough to get a partial treatment. Still not getting 5FU bolus in the chair, only with the pump.

Onc did not schedule next chemo – waiting for outcome of my visit with onc at the Cleveland Clinic. He has published on extrahepatic CC, not the same as my ICC, but a lot closer than women’s breast cancer. Current onc has no Plan B for when my current treatment no longer works. She is unable to get insurance to pick up off-label drugs. That is purpose of new onc. Dr. Alberts from Mayo says if all else fails, contact him again and he will see what he can do. He has gotten approval in the past for sorafenib. Of course, he is out of network. Thanks, Obamacare. Another option might be xeloda, which was recommend by Dr. Javle at MDA.

One day at a time, gang. One day at a time.

Peace.

Duke

The radiation oncologist is the one who said I should be happy I lived this long.

My onc may be a very good women’s breast cancer onc, but the entire center has only had four CC patients of all types over the last three years. They have found a script (1. cis/gem, 2. carbo gem, 3. gem only, 4. FOLFOX6, 5. hope the patient can find a trial. They have shown little interest in looking for a trial for me.) for how treatments should be conducted and have no interest in deviating from it. Like I said, no imagination. Notice that palliative surgery and radiation are not listed. I believe the statement was something like, “No doctor would even consider surgery in your case.”

So, a note to anyone who reads this, there is NO substitute for experience. Find out the collective experience levels of those who will be treating you and how open they are to listening to second opinions from outside their hospital system. Some doctors have huge egos which don’t respond well to patients who express their opinions. (Never let them forget – this is your life under discussion, not theirs.) If you don’t like what you hear, you have two choices. You can either stay with them and hope for the best or you can look elsewhere and possibly experience a lot of inconvenience in getting treatments and possibly have the same results in the same time frame. Unfortunately, some of the decisions you make are done in the first throes of the shock of being diagnosed.

Duke

Gavin –

I use celery instead of neeps.

Would you care to explain the differences between neeps, swedes, turnips, and tumshies?

Following is from Wikipedia and reproduced for entertainment only:

“A neep or tumshie is the ruit crap brassica rapa var. rapa that’s aft growen in maumie climates athort the warld for its white, bulbous tapruit. Smaw, neshy kynds is growen for human consumption, while lairger kynds is growen as feed for stock. Neeps is weel-likit in Europe, parteecular in caulder airts, sith they growe weel in cauld climates an can be keepit for mony months efter the hairst.”

and

“As the 2001 English edition of the Larousse Gastronomique puts it, “Although its description is not immediately appealing, haggis has an excellent nutty texture and delicious savoury flavour”.”

Who wants to start that recipe thread with this info?

Duke

Platelets fine today, 81,000 but WBC 2.2 and ANC 0.6.

Next week. (sigh)

Duke