“Hey! Look at you! You made it!. Got through all your treatments, didn’t end up having to go to the hospital. You’re looking good!”
So said one of my doctors on a follow up visit a few months after therapy. I had no idea that it was special not having to check into the hospital or getting too sick to finish. But apparently that’s the exception rather than the rule.
That I made it through as well as I did, better than some of my cohorts – and keep in mind at this point I don’t know if I’m truly done, I’d like to attribute to deeper faith, tougher mind-set, maybe my Irish potato-famine metabolism. But in reality, I was probably because I started off way fatter than the others. On the other hand, we managed to prevail with a rather short learning curve. Along the way, I learned a few things that I’ll happily pass on;
1. That extra 20-30 lbs you’re carrying isn’t going to kill you. During therapy, it could make your life easier. The typical weight loss for the kind of treatment I went through is around 50 lbs. I was a good 70 in the plus column. Others who were at 180 drifted to a abnormally low 120, and had issues eating enough to put any back.
2. If you’re a guy, get a wife. A good one. I can’t stress enough how nice it was to have a spouse able to deal with the doctors offices, insurance, and me not wanting to do things. It was horrifically stressful on my wife, but she handled it with grace. I can’t imagine how hard it would be to deal with bullshit (Excuse the french) when feeling that bad. In all likelihood, I’d have never eaten, or fed myself properly. It would have been really tough to get myself to treatment towards the end.
3. Get a binder and save everything – Test results, insurance letters, prescriptions, and the general typhoon of paperwork that each visit will generate. Keep a chart in it of all the medication taken. If and when you have to see a different doctor, having that information on hand is invaluable. You can ask for any test results and even your doctors notes. Keep it all, you’ll need it. In 6 months, we filled two 3″ binders.
4. Speaking of the med chart, keep a spreadsheet where you can record when you’ve taken what medicine. If you keel over and have to be carried to the hospital, that information will be useful. You’ll be taking a battery of pills. I think I had half a dozen different ones to track. I found it a useful tool to simply track what I took, when, and what was coming up.
5. Chat with the nurses, especially the chemo center ones. Ask plenty of questions. They see cancer all day, and usually have great tips that are a huge help.
6. After treatment, you may be really dehydrated and not be able to drink enough to get to where you need to be. Have the doctor set you up with IV hydration. The chemo (infusion) center does this. You can also get home care for the weekends. They show up, hook up your IV to your port, and leave. (My wife unplugged it when it was done).
7. Don’t get overcome by events. Keep control of the process. If something is going on ask why. In the beginning I was being sent to appointments that were made for me by my two doctor’s staff. While this can be a huge benefit, keep in mind that if you don’t have the doctor you need (Like a digestive doctor for a feeding tube) they’ll find one, Usually a colleague, hopefully on your plan. Some that I didn’t know, like the vascular surgeons for the port, weren’t all that great. The guy putting it in did a great job, with local anesthesia. The guy that took it out put me to sleep and made an ugly scar.
8. I don’t think I met one anesthesiologist that was on my insurance plan. That’s a huge issue, since for my plan they pay 80% of their rates, which the doctor will happily take. And then bill you for the full retail, minus what he got. I’m at the point that I flat out tell them to not send me a bill, it won’t be paid, before they even start. That sounds cruel, or mean, but keep in mind, they’ve all made towards a grand for less than an hours work, which for the most part was shooting proponol in your veins and making sure you don’t croak for the short procedure. They know the drill. The insurance pays “X”, Don’t expect “X+Y”
Definitely ask as many questions as possible. I was lucky to have two doctors, both good, but one that was exceptional that was very clear and open about what was going to happen, how long it would take, and what I could expect for the long term.