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.

Friday evening

Nice to talk with Ron today, and Kim, and a very funny email from Donna providing a link to an internet list where people with backyard fish ponds discuss ways to deal with pesky great blue herons who, it seems, enjoy dining on expensive koi. Meanwhile, here's what I learned about the migratory habits of great blue herons: "Birds east of the Rocky Mountains in the northern part of their range are migratory and winter in Central America or northern South America. From the southern United States southwards, and on the Pacific coast, they are year-round residents. However their hardiness is such that individuals often remain through cold northern winters, as well." Well, Jessie and my heron would be an "east of the Rocky Mountains" bird, but perhaps it will turn out to be a hardy individual who sticks around through the cold northern winter, I hope so. I've attached a photo that looks a lot like our bird, but isn't.

More chemo factoids tomorrow.

Sleep well.

Friday afternoon

Well, I survived my first visit to the Cancer Center, albeit just a consultation visit - no treatment yet. I liked Dr. R and the oncology nurse, E, assigned to my case. I learned that I have lost 5 pounds (is that how much a uterus, ovaries and tubes weigh?) since my pre-surgery weight. My blood pressure was higher than what is normal for me, but not so high as the first time I went to see Dr. M before the surgery. I'm not going to try to write about all the details of the visit, proposed treatment, side effects, etc. right now - too tired. I'll try to do that tomorrow. The bottom line is that my first chemo is scheduled for next Wednesday, November 11th. If all goes well, the second would be on December 2nd, and the third right before Christmas (not a problem for me and both Dr. R and my nurse, E, are Jewish, as well). I came home with a thick packet of information - everything you didn't really want to know about chemo therapy, its side effects, physical and otherwise - and including a booklet from the American Cancer Society showing various turbans, scarves, hats, bandanas, and wigs. I turned down a "prescription" to buy a wig (which my insurance would have paid for).

I'm feeling okay. I wish I could hug my daughter, get a back rub from my son (and hug him, too) and sit with my grandson on my lap all weekend - and metaphorically speaking, that's what I intend to be doing in my head all weekend.

More tomorrow (or possibly even later tonight).

Peace.

Friday morning

The great blue heron was gone. Perhaps he/she was just off foraging for breakfast or otherwise occupied. I wish I knew what the heron's migration pattern is. I'll have to look into it. Today's walk was graced instead with another lovely sight - a gaggle of 10 or 12 Canadian geese came flying in low toward the pond just as Jessie and I walked past. They circled once and then as group they landed in the water - splash splash splash splash. It was beautiful.

More later after I've met with Dr. R.

Peace

Thursday night

I began the day with another walk with Jessie at the park. I'd like to keep doing that as often and as long as I am able to. I saw the great blue heron, but barely, on his perch on the small floating raft-like thing. It was just after dawn and overcast and his/her color faded into the color of the pond and the sun rising behind him/her just showed his/her shadow. At the end of our walk, I sat in the rock garden where I sometimes have tied Jessie to a bench and then practiced my Tai Chi. No Tai Chi today; just sitting on the bench in the sun, thinking about time and seasons, about how green growing things will fade and seem to die back and then revive and burst out again in the spring.

Quiet day today. I did have a call from the Cancer Center where I am to meet with Dr. R tomorrow morning for my "meet-and-greet" in which I am to learn all the gory details about the "treatment" and its side effects. Another slight ... hitch. My cell phone rang. "Hello" I said. A woman said, "this is St. Francis Cancer Center." I said, "Yes," She said, "May I please speak with Laurence." I said, "this is Laurence." "Oh," she said, "you're Laurence? Oh..." Okay, she's just calling with an appointment reminder. But somewhere I hope there is a record that Laurence is the person to be treated for uterine cancer. Not sure how many men in the world have received that diagnosis.

The thing stirring my emotions today is this: worry that Dr. R is going to be pissed at me because I refused to accept the appointment next week, and insisted on one this week. I guess that's displacement. I'm really scared about facing the chemo, but I'm displacing that fear into an irrational outlet - revenge of the MD oncologist for appointment-changing-high-maintenance patient!

I had a lovely chat with V last night. And today I received a wonderful note from my sweet daughter, snail mail no less (we both like snail mail), and a package from my son sending me a dvd with copies of the short films that were included in the film festival he just organized (successfully!)

All in all a good day. Nervous about tomorrow. I'll be going by myself; need to take a notebook and write things down.

Peace.

Wednesday afternoon

Well, a woman from Dr. M's office did call me - about 11:30 this morning, with news that my appointment with the MD oncologist, Dr. R, has been moved up to this Friday morning. That worIks better for me. I'll hear all the gory details about the treatment, its side effects, etc. etc., and then have at least the weekend before the chemo starts, but still should be able to get it started early next week. Still, the woman from Dr. M's office first told me that the appointment would be with a different MD oncologist. She even gave me the other doctor's name - Dr. P. I asked what Dr. P's first name was and she gave it to me. I asked if Dr. M had a problem with my changing from Dr. R to Dr. P - and that seemed to trigger some sort of confusion in the woman. All of a sudden, she apologized and told me, wait - no, I'm sorry, your appointment is still with Dr. R but on Friday.

So what does that mean? If I had written down Dr. P's name and the appointment time and hung up without asking further questions, and then showed up for an appointment with Dr. P, would Dr. P have known about it? Was it really changed to Dr. P? Or was that just error on the part of someone in Dr. M's office or the MD oncology office? It's weird to me that this scientific area - medicine, and oncology specifically - which as a lay person (and a patient) I tend to think of as very detail oriented, precise, careful - seems so hit-or-miss sometimes. Oh, wrong date? Sorry. Oh, wrong doctor? Sorry. In the end, I guess it's okay as long as they have the right diagnosis for the right patient. (Reminds me that when I had surgery on my right breast a few years ago, they put several stickers all over my LEFT breast that read "NO" and (I kid you not) had a frowny face on them. Actually a friend told me today that last week when her young nephew - who is diabetic - was brought to the hospital with a serious head/brain injury (a tree limb fell on his head), despite his family informing the hospital of his diabetes, still somehow the hospital gave him an IV that included sugar (or glucose - at any rate, something he should not have received as a diabetic) for something like 12 hours. It almost killed him. But thank God, he's going to be all right.

Me, too. I'm doing all right. Good walk with Jessie in the park this morning. A second good walk with Helen around the neighborhood. Cleared up the MD oncology meet-and-greet appointment delay. Talked to friends at work. I'm tired, a busy day, but a good one... so far. I'm not done yet!

Tuesday afternoon

Someone from the medical oncologist's office called to tell me when my appointment to meet the doctor is scheduled. I was unhappy to learn it is not scheduled until November 11th. I protested, which was for me crossing a boundary in my normal "patient" behavior (generally, whatever the doctor tells me, I just go along with it. I have not historically been a strong advocate for myself as patient.) I protested saying that my doctor, Dr. M, had said the appointment with the MD oncologist would be THIS week, so I could start chemo NEXT week. If I don't even meet her until the 11th, when will chemo start? Oh, she said, you could start treatment the next day. I protested that, too, said I'm not comfortable with that. And I realized I wasn't. What I understood Dr. M to be saying yesterday was that I would have an appointment some time this week to meet the MD oncologist, hear details about the treatment, meet the oncology nurse assigned to my case, etc. And then have a few days before the first chemo took place. But on the proposed schedule I won't know anything more or take any other step forward for more than another full week. And then the chemo could be sprung on me the very next day.

I don't like it and I told her so. She said she would tell the MD oncologist. Then Dr. M's office called to tell me the date in December - the 7th I think - when I am scheduled to meet the radiologist. I told her that based on the schedule being set by the MD oncologist, I won't be anywhere near ready for the radiation treatments on December 7th. I told her the MD oncologist meet-greet is scheduled for Nov 11th and how unhappy I am about the delay. She said she would tell Dr. M and ask him to call me.

I've learned something from this, weird as it seems. First - that while I really am feeling stronger every day, and while I really did feel better after meeting with Dr. M yesterday, there are still deep emotions roiling just under the surface of my mind, my soul, whatever, and feeling "normal" and "hopeful" is a very narrow and winding path I am walking right now. It doesn't take much to push me off the path and into that morass out there, just barely out of sight, full of fear and grief and anger. How fragile is my new and untested hopefulness. I learned I had been counting on the idea that later this week I will learn more about what is to come with the chemo and yet not have to actually face the chemo yet; counting on there being a little more time before I have to face that, and yet not too much time; knowing the sooner it starts, the sooner it will be over. Now, this likely pleasant woman just doing her job calls to tell me about this appointment and I lose my foothold on normalcy and feel the fear, the anger inside me.

Well, let's see what happens, Will Dr. M call me back? Will he limit himself to being appropriately sympathetic? Or will he try to move up the appointment schedule? Will the MD oncologist herself call me? Will the appointment date be moved up sooner, this week? Who knows?

What I have learned is that really it shouldn't be such a big deal. These things happen. The fact that it "got to" me is the main interesting point of today's experiences. I am learning to know myself: "This is my self. This is my self with uterine cancer."

A beautiful fall day, by the way. I'm going to meet Helen for a walk tomorrow. And right now, I'm going to go read about evolution.

Peace.