More is Revealed

OK, so that wasn't so bad. I was so physically, mentally and emotionally drained after the day at with the Onks that I took what amounted to a 3-hour nap this evening. I'm feeling much better now. I am glad this day is behind us.

Here is the proposed treatment: 33 treatment days of radiation therapy accompanied by chemotherapy with the possibility that the chemotherapy will continue for a short period after completion of radiation therapy. I'll be visiting the Cancer Care Center every weekday (M-F) for almost 7 weeks for about 15 minutes of zappage. We won't know what day we start until I've visited the Mayo Clinic for a second opinion on the proposed treatment. I think it's safe to say that, assuming the 2nd opinion coincides with the initial treatment proposal, I'll be starting sometime mid- to late September.

The chemotherapy agent is Temozolomide, brand name Temodar. It is a very common chemo agent. The pill form is quite new, but the drug itself has been around awhile. In my case, we are using it to complement the radiation therapy. It is well-documented that the radiation therapy being done to me is more effective when accompanied by this chemotherapy agent. Since it's in pill form, I don't have to strap in with the IV, which is a big plus. Now if they could just do the WMD in pill form. Guess we can't have everything.

I spent almost 1 1/2 hours with Onk #1, the radiation oncologist. He meets my standard for brain tumor expert. He said he has had about 20 brain tumor cases so far this year, which should easily put him in the neighborhood of 25 cases this year. He said he has handled over 500 BT cases in his career, and this is primary BT cases, which don't include BT cases where the cancer started somewhere besides the brain. He's got the bona fides.

Onk #1 has an excellent bedside manner... very patient and thoughtful while he's working. We spent a good deal of time looking at imaging (MRIs, CT scans) - comparing before and after, etc. The MRI from this past Tuesday looked pretty good. The tumor is basically gone. There is less swelling after the surgery. This is important because the area affected by swelling is where we're looking for rogue cancer cells to zap. We're still going to be zapping anywhere that had swelling before the surgery, but it's a good sign that the swelling has decreased. Onk #1 joined the chorus of medical professionals on Go Team Jeffrey! who have opined that I am an awesome healer. He thought the surgery looks fabulous.

We met with Onk #2 for about 45 minutes or so. His responsibility is for the chemo component of my treatment. He seems quite competent and is the head of the Oncology department at the hospital. By his own admission, he is not a BT expert - he handles a handful of these cases every year. We talked about the availability of access to BT experts at Mayo, and he graciously offered to make an appointment to consult with one. I immediately took him up on it. I'll be calling tomorrow to try to get that firmed up. We need the appointment to be ASAP to avoid any delay in starting the treatment. Hopefully sometime next week we'll be meeting with a BT expert oncologist in Rochester.

Overall Lori and I are pretty happy with the plan and how things are looking. I think she's slightly happier than I am, but that may be only because I get to be the one actually strapped in for the treatment. But I'm basically pretty happy about it.

Most people doing this radiation treatment in the dosage I'm doing do not have major side effects. Fatigue is common but usually manageable. There will likely be some nausea but most people are able to manage it with anti-nausea drugs. I'll probably lose some hair and it may or may not grow back to normal. There are some additional possible side effects to the chemo, but again, they are manageable for most people. There is a very good chance that I will be able to drive myself to the treatment appointments AND be able to work a normal work schedule throughout the treatment cycle. This is all very good news. Of course not everyone manages all the side effects optimally and I could very well be pretty sick a lot of the time during the treatment. We just won't know until we get into it. But both Onks made a pretty convincing argument that the outlook for side effect management in my case is very good. This bodes well.

So here's what the near future looks like:

Monday morning - EEG to see if we can get off the anti-seizure meds and return to driving. Probably won't know about the driving until appt on 9/18 but should know about getting off anti-seizure meds by end of next week.

Monday afternoon - Radiation simulation to create model for designing precision targetting for WMD. This should be interesting because they're using sci-fi tools to do this.

Sometime very soon, maybe later next week - visit to Mayo in Rochester for consultation with BT expert oncologist to get him/her on Go Team Jeffrey! and get 2nd opinion on treatment plan.

9/18 - surgery follow-ups with neurosurgeon and neurologist. Big day because I find out if I can get back to driving.

Date TBD, probably late-ish September - begin radiation therapy.

Once we're done with the radiation and chemo, we wait. We take MRIs and CT scans every so often and see if anything new develops. If nothing develops for 5 years, I'm cured. It's not often that happens, but it's well within the realm of possibility. If something new develops, we see what it is and decide how to get rid of it.

So much for the Onks. I've had enough of those cats for one day.

I started reading the Cancer Report book I mentioned yesterday. This is so exactly what I need to be reading. The first thing they start talking about is forgiveness... how crucial it is to not harbor resentment. I have long believed that this is one of the root causes of dis-ease in general. It's an ideal for which I've aimed for many years. I am stoked to read the book cover to cover.

I guess that's it for today. Another memorable day on this lovely adventure. More has been revealed - let us celebrate the revelations.