Bubkes

I visited MD Anderson yesterday. I drove from Austin with pal Stephanie. We met cousin Julie so she could join us for the meeting with Dr. F. Stephanie and Julie provide tremendous support, humor and relief from having to drive myself to Houston, on these visits. (No good comes from me being alone with my imagination 3 hours before or after an MD Anderson appointment.) No time for puzzles. We went straight in and got to the heart of the matter with the MD Anderson team.

“Jan, I’m going to teach you a Yiddish word. Bubkes. This means nothing. You’ve got one big piece of cancer, other than that, bubkes.” This was Dr. F’s response when I drilled him about finding other cancers in the CT scans taken in May “You’ve had time to really study those tests. Is there anything in my lungs? What about my intestines?” Bubkes. Good news.

We reviewed the CT scans from May again. It’s really all about tami and getting her the hell out. Dr. F. reminded me that my focus needs to be on the liver tumor. “We have a long way to go.” We are not trying to reach a certain size at this point. The desired shrinkage size is balanced with my tolerance of the medicine and side effects. I think it’s one of those things we’ll know when we get there.

On another note, my rash of unknown origin has a possible origin. It seems a small number of patients experience a severe rash from Temodar. Once again, I seem to be in that small number. As a result, I will take steroids with the Temodar (5 days per cycle). I said, “No, I don’t want to take them.” I was oddly assertive. Next, I pleaded. I gave a good argument why I wouldn’t be taking the ‘roids, but was overruled by Dr. F. He and nurse Bigshot both got the look on their faces. Many of my health care specialists give me this look. It often means, Jan, you've been reading again haven't you? The one where they tilt their heads to the left, listen, nod and smile patiently while I finish whatever rant I am on. They handed me the prescription anyway. Doi.

More chemo next Monday. Vacation at the beach next week. Hats and tons of sunscreen. We’ll measure progress on July 15 and discuss on July 16. I believe we’ll do more chemo after we discuss the progress.

I’ll leave you with another Yiddish word for nothing, courtesy of Dr. F. GORNISHT.

Photos

smack, smack,
Jan

PS. In case you are confused, yes, there really is another tumor in my lymph node next to my pancreas. It is much smaller and will be taken out when tami is removed. I didn’t forget, don’t worry.

Rash Decisions

It was all going so well. I finished with my third round of chemo. I still had (and have) my hair. No heart explosions. Not an extreme amount of hurling. I was home free…then it happened. Monday morning a funny-looking rash appeared on my neck and chest. By midday, I had tiny blisters on the back of my hands and fingers. By evening, my ankles, legs and arms were overrun and it itched like hell. I woke up scratching the larger area around my neck and chest until I drew blood. Damn. I had to call a doctor and be the 1% freak again. I feel like a medical shitshow. But whom should I call? Who handles rashes at 3 a.m.? I emailed Dr. F. He didn’t know what it could be, but I was to let him know what I found out. I made an appointment with Dr. M. and, of course, I emailed Dr. BAH, just in case her oncological researchy (not real words) genius came in handy. She opened a spot for me with PAL (Physician-assistant L) at Texas Oncology.

Some of you may know this is the week prior to our company’s biggest event of the year. Not a good time for an itchy rash or an emergency trip to the rash doctor. My co-workers were glad (feel the sarcasm) to see me leave the office in the middle of the day during our busiest week. By the time I left my office I had a rash along my hairline and on the sides of my nose. Nice. Luckily, I still have freckles that made the red marks seem questionable and confusing at first glance. But the scratching gave it away. Folks are very uncomfortable with mysterious scratching and I noticed them taking a few steps back when I talked with them. So, in the end, I think they were secretly ready for me to leave the office. I saw some of them starting to scratch as I left. Sympathetic rashing.

I met with PAL. She was great and very funny. She slyly asked me random questions while she examined my arms and hairline. In one easy movement, she wheeled her chair toward the door, holding one hand to her ear while stating that she thought she heard Dr. BAH’s shoes coming down the hall. She keeps tabs on Dr. BAH by listening for her shoes. She wanted to pull her in as they liked to study rashes together. Enter Dr. BAH. “Hey, you still have your hair, that’s a good sign.” And then, all at once a flurry of examinations began…shirt, skirt and hair lifting happened to me with mutters, pokes and hmms from the medical team. When they finished, I sat my disheveled self back down. They both looked me squarely in the eye and Dr. BAH confirmed that I indeed had a rash and it looked uncomfortable. Neither had ever seen this side-effect from Xeloda. She said it wasn’t shingles and I confirmed no changes in soaps and no poison ivy on my couch, which is where my nauseas ass was all weekend watching AX Men and Ice Road Truckers. Exit Dr. BAH and her locator shoes. More questions and humor from PAL. Steriods, lotion and no primary source. Sounds familiar. And I’m still itching.

I left TX Oncology with a rash. Just a rash, diagnosed by the best. As I left I noticed a woman who was so weak from her treatment her husband had to wheel her in a chair. I said hi and smiled at another woman with her family. She looked terrified, hell they all looked terrified. I’m sure I did on my first trip too. I wanted to tell them the same thing the young lady with no hair said to me in the elevator on my first visit there. “Don’t worry. You are in the right place and it’s not nearly as scary as you think. They’re awesome here.” And she was right.

In the meantime, I’ll take my rash, and my thinning hair, right back to a job I can still go to every day where people like me and put up with my crabby, steroid, chemo ass and incessant scratching that makes my co-workers uncomfortable. I’ll take my rash any day.

kisses,
Jan

The Thing About Hugs

Evidently I’ve never been a “hugger.” Just ask anyone I work with. Occasionally, during this cancer adventure, I update the managers I work with so we are prepared when I go away for surgery. We’ve worked on a “tami eviction” plan while I take a leave of absence. It is always during these conversations that one of the managers looks at me and says sweetly, “Jan, this is where I just want to give you a big hug,” and my reply is always, “No, no thank you, I don’t think so.” However, lately I’ve noticed something different about myself and the “huggers” in my life.

Sometimes hugs are just easier. If I haven’t seen a friend or family member in a long time and they aren’t quite sure what to say or ask in terms of the cancer, a hug just seems easier. We’re talking full-on, double-breasted bear hugs with sometimes a pat on the head (mine not theirs). There isn’t time for that one-shoulder, lean-in crap. It’s a hug full of “Hey, I been thinking about you,” or “Geez, I don’t know what the hell to say so this hug should say it all.” And that is okay by me. Oh, the hugs I get.

Everybody’s hugging. Doctors, family, friends, even people I’ve only know for a short while. One awesome pottery classmate, after hearing of my adventure, immediately popped around the art table and gave me a big one. It feels a bit like those people who touch a pregnant woman's bump. Sometimes they ask and sometimes they don’t. You just lean into it and it usually ends up meaning the world.

There is no need, if you are not comfortable, in asking about the Xeloda, the insignificant leakage in my mitro- and tricuspid valves, or my bowel movements. I have “people” who ask these questions…sometimes, much to my delight, in inappropriate places like baseball games or over dinner. So don’t you fret, a hug will do just fine. However, should you ever want to know about any of the other stuff, just let me know.

Evidently I’m now a hugger.

Why hugs Jan? Why write about hugs? I have nothing else this week. Day 9 of chemo and all is well.