Saturday morning

The heron is back! We walked all the way around the park and I didn't see him/her on the first pass by the pond. Oh, well, I thought, I guess I'll have to keep an eye out for when he/she returns from his/her winter home. Then as we were getting ready to leave, I thought maybe I would walk around the pond itself, not something I usually do, there is no path and the morning grass can be very wet with dew. But the sun was up and streaming and I thought it wouldn't be too wet and Jessie might like to poke her little black nose in the tall grasses and reeds by the pond's edge. So we started to do that when who should appear but the heron. Not where he/she usually is, but on the other side of the pond, the side "owned" by the ducks who live there year around and the Canadian geese - all of whom were absent this morning. So we stopped and watched the heron for a while. I saw him/her first stretch out that long neck - what I think may be a defensive stand. Then, once he/she no longer sensed danger, the head slipped back down to that big blue/grey body and the neck just disappeared. Interesting how different the bird looks with its neck fully extended as opposed to with its neck completely relaxed. The yellow beak stood out; the grey/blue body blended with the ground, covered with brown/green/grey leaves. Anyway, I am hoping this is one of those hardy individual herons who do not migrate, because the temperature was below freezing last night. Selfishly I hope he/she stays through the winter.

Yesterday: there was so much information given to me by Dr. R and nurse E. that it is hard to know where to start sharing it. The first thing I learned is that the specific type of tumor/cancer I "had" is pretty rare, rare enough that there is not a really well-established set treatment protocol. Dr. R - who said she was at either Sloan Kettering or Dana Farber for a number of years, I forget which - said she had contacted a colleague at one of those places to discuss the treatment protocol. She hadn't yet heard back. She was very open to my seeking a second opinion, if I want, and offered to introduce me to someone at either institution. She also said I could pursue participation in a clinical trial, if one is being offered (I think that was part of why she contacted her colleague, to find out if there is a current clinical trial relating to "my" type of tumor). I'm still thinking about the second opinion issue, but it seems to me that if I trust my doctors and if my doctor is checking with colleagues at other institutions to confirm treatment protocol, then I'm not sure what i"d gain from the second opinion. I know that getting treatment at SK or DF would be very inconvenient. So any way, I'm mulling all that right now.

I will be given 2 drugs as part of chemo: Paclitaxel and Carboplatin. The potential side effects are wide and in some cases extreme. Hair loss (surprise surprise), fatigue, pain including pain in the joints, bone pain, changes in color or texture of fingernails, nail loss, nausea, taste changes, diarrhea, numbness or tingling in hands or toes (this is apparently serious and can be permanent so I'm supposed to tell them right away about this), kidney function, vision and hearing problems, rashes. One drug - I think Carboplatin - can cause serious allergic reactions, right up to and including anaphalaxsis but they will give me other drugs in advance to address this and say they have not "lost one yet" (great! right?) I've saved the best possible side effect for last: one of the drugs - I forget which one - can actually give the patient leukemia - rare, but it has happened. Dr. R told me this - one thing I liked about her is that she is so down-to-earth and tell-it-like-it-is - but also said that in her professional opinion, the benefits of this treatment outweigh the risk. I trust her, but there is some element of emotion there in me that says it is always easier to make such a "professional opinion" if you're not the person bearing the risk. But hey, what do I know - I'm just the patient. What I liked about Dr. R was that she seems absolutely committed to me as the patient, and very optimistic about the point of all this - to cure me completely. Now that I can get into.

To prepare for Chemo #1 on 11/11 I brought home a plastic "hat" that gets placed on the toilet and a big red plastic jug so that I can do a 24-hour pee collection (sorry if I am being too graphic for anyone). I'll do that from Sunday AM to Monday AM and drop off the jug of pee on Monday. I think it helps them gauge the amount of the chemo drugs to use on me. Then Tuesday night I have to take 5 pills of dexamethasone - some sort of steroid I think - at 10 pm, and again 5 more at 5:00 am the morning of the chemo (nurse E stressing that 5:00 am is important and calls for an alarm clock if necessary - probably will be necessary, I'm an early riser but not that early usually). Then I go in on Wed morning and nurse E gives me a bunch of other drugs - some anti nausea meds (which I already have - she called a prescription in; I bring the drugs with me and she gives the the first dose and explains how I am to take the remaining doses when I go home), as well as drugs to address the allergic reaction issue, etc. Then the chemo starts. One drug takes about 3-4 hours to infuse (I think this is the one with the potential allergic reaction issue; nurse E told me they do this one very slowly, especially the first time, to check for the allergic reaction). The other drug takes about an hour. I should be there - assuming no allergic reaction issues - about 6 hours. I come back on Friday morning to get a shot of something or other - I forget the name - a drug that significantly aids in keeping your blood count up, white blood cells I think. Then I come back again, I think toward the end of the following week (mid-cycle in the 21-day treatment cycle) for blood tests to see how my counts are. Then the counts should be building back up for Chemo #2 which is scheduled (assuming counts are good, etc.) for December 2nd.

Hair loss supposedly starts around 3 weeks after the first treatment. Nurse E suggested that some people find it easier to have their head shaved before the hair loss gets really bad and clumps of hair start coming out. I think I'll do that, but I want to figure out where I want to go to have it done. I usually go to one of these walk-in places and I don't think that's who I want shaving my head (nurse E said just to make sure they clean the electric razor well with alcohol before they shave my head.) Speaking of shaved heads, in 1979 I was hit on the head by a cop at a political demonstration. Required 15 or 16 stitches. I had at least a mild concussion (which later led to my developing a mild form of epilepsy, causing fainting spells; that was treated with anti-seizure meds for 4-5 years, after which when I went off the meds, the fainting spells did not re-occur.) Anyway, I'm looking forward to seeing if I have a nice Frankenstein type scar on my naked skull.

I think David is feeling out of the loop somewhat, since he couldn't make the consultation with me. He told me last night he feels like he doesn't know what's going on. I shared much of the above info with him already, and they gave me a big packet of printed materials (including a glossy 3-color booklet called "Chemotherapy and You" - nurse E said there is one factual error in there, it says don't eat on the morning of your chemo; she said I could eat whatever I wanted on the morning of my chemo - ha!)

Okay. That's it. That's enough. That's probably overload for most of you since it was definitely overload for me, hearing it all first hand. But it's the next day, and I'm doing better. David and I are going to try to move my boat-shaped-object from Ben's garage back to our parking lot, store it there either on the trailer or on sawhorses, and cover it well for the winter. Well, David and Ben will be doing to lifting. I'll be exercising my astute powers of supervision.

Love to each of you.