One week since my first chemo treatment.
Blood levels are normal. The doctor feels softness in the mass in my chest. I’m still fat-faced Steve, but the doctor told me he might not have recognized me because I look so different compared to how I looked in the hospital. A week ago, I was pushing beyond Alec Baldwin status…or at least to a magnitude of angry, drunk Alec Baldwin status (not cutsey, funny man, 30 Rock Alec Baldwin).
Here’s the most amazing thing that happened to me today: I had to get a chest X-ray. They sent me to UCLA Imaging outpatient office in Santa Monica. Wait 15 minutes. 5 minutes for X-ray. On your way. Easier than ordering lunch. Really. Jen even walked to Staples during the whole thing. I love UCLA.
I also got a few questions cleared up with my doctor today that weren’t clear to us before. We are keeping excellent notes and files about everything – but we thought we were missing a key document – the actual diagnosis. Up until today,I thought the only piece of paper I had with an explanation of my SVC syndrome was a doodle on a piece of notebook by the doctor.
Yesterday, we went for a 2nd opinion. Since we thought we didn’t have this ‘diagnosis’ document, the 2nd opinion doctor had a few questions about my condition that it seemed like we should have the answers for. Which made us worried. But it all got cleared up today. Which is good.
So far, the most difficult part of the treatment is the communication between patient and care givers. It has been hard getting bits and pieces of info from nurses and only seeing my doctor a few minutes each day in the hospital. Not that the ‘Chemotherapy and You’ booklet didn’t answer all my questions (it didn’t), but spending over an hour with the doctor going over everything step by step was a huge relief. Which proves: You can’t replace a doctor with a pamphlet, no matter how well written or how cute the clip art.
For now, the choice between doctors seems to come down – not to quality of care, because both doctor’s are excellent – but to bedside manner and communication. Do I want a doctor who worries a bit more than he probably should? Or a doctor who is supportive and upbeat? Should the patient know every little detail? How many outside opinions should the patient get before they begin inhibiting the decisions of his/her doctors? Do I want my doctor to have grey hair or a flowing mane of beautiful black hair?
Here’s some new information (I put it in red so everyone knows it’s important stuff and not jokey stuff):
- Yes, I have blood clots. And they will begin treatment in a couple of weeks for it. First we need to treat the tumor, then the clots. And we are monitoring the clots to make sure they don’t get any worse. But for a number of reasons, we can’t treat them until the tumor shrinks and takes off some of the pressure. No tumor = no clots = no swollen head = back to regular life.
- If you get a fever while under chemo, you have to go to the ER. A fever is a sign that you could die. (This probably should have been told to me before I was sent home from chemo, but good information nonetheless.)
- My white blood cell counts shouldn’t be on too much of a roller coaster ride. Hodgkin’s patients generally have stable white blood cell counts. But every patient is different. Even if my counts go down, they should go back up in a couple of days. These counts are the motivation for all the good nutrition, avoiding sick people, using Purell and general common sense stuff that goes along with chemo.
- Chemo attacks fast growing cells (like cancer). It also attacks fast growing cells in the lining of the mouth, lining of the intestines and hair follicles.This is why there are so many side effects, like gut trouble, hair falling out, etc.
- Everything makes sense if you actually get a good explanation and you don’t have to look at blogs and websites and hear it from 5 different nurses.
It is impossible to tell what my next 6 months will be like. I should be fine. I may have some ups and downs. Its all about staying healthy, eating well, staying as active as possible and plenty of rest.
And on a final, positive note, we were told that doctor’s like to treat patients with Hodgkin’s Disease. Because they get better. And every doctor likes to treat patients that get better. Makes the doctor look good, makes everyone feel good.
I’ll be happy to oblige.