Saturday morning

No park for Jessie and me this morning. First, it is snowing. Lightly - not like the winter storm that the rest of NY and New England seems to have gotten. Second, I'm in the upswing of the bone pain/ache effects of the post-chemo NuLasta shot and I just wasn't sure how I'd feel when I got to the park. I'm really fatigued. I have felt like I had more nausea from this chemo - just slight queasiness, not hold your head over a bucket and gag -- and general aches and weariness. But I guess partly that's because now I'm back at work full time, dealing with all that, and when i went through the first several chemos, I was either not working or working from home. At any rate, I just seem to want to sleep, not a lot of energy - except to eat, which has got to be those darn steroids. And already the chemo has affected my taste so that I feel like I"m starving but then the food doesn't really taste like much. Oh well, same old... same old.

I just registered for the "Weekend of Hope" retreat of cancer survivors in Stowe, VT at the end of April, first weekend of May. At least one of the women, L, I met during radiation is also registered. It feels funny to do it. There's a certain sense of acceptance of myself as a cancer survivor by doing it, looking past the initial "treatment" phase and on into the future. I don't want to become focused on cancer, even cancer survivorship, in my life, but I don't want to ignore it either. Anyway, a first step. (One discussion I sighed up for was something like "Art and Writing" for survivorship, but I promise not to drag this Blog out for the rest of my life!)

I'm going to have a cup of coffee and hunker down under a blanket and try to read, or give up the ghost and just sleep.

Peace

Wednesday night

Chemo #4 is history. It wasn't too bad, and didn't take too long. I'm really really tired and feel a little ... odd or off. Tiredness I think is from staying up to take the 10 p m meds and then get up at 5 am to take those. I didn't really go back to sleep after that. (In fact, I was watching a cable TV show called something like "Way Too Early" that was having a contest of some sort - write in to tell them why you were up that early watching - to be fair, they were taping from Vancouver so it was 2 a m or something like that. I thought for about 4 seconds about writing and saying "I'm up this early to take steroids as pre-chemotherapy therapy." But no, not my thing.)

Thanks to all for the well wishes pre-chemo. Please keep prayers, positive energy, crossed fingers, toes, and assorted limbs, salt tosses over the shoulder, and any other thing that anyone feels might help coming my way. In the short run, my petition would be for non-severe side effects. Doesn't seem like too much to ask for, does it? You never know. A 7.0 earthquake in the poorest country in the Western Hemisphere didn't really seem "necessary," did it?

Peace.

Tuesday night

Chemo #4 tomorrow. At this point I realize that what I am anxious about isn't the chemo itself - I have books to read and my iPod and there are always interesting people to talk to and I'm no longer afraid of going into shock and dying on the spot. What I get anxious about is the after effects, not tomorrow night, or even the next night - just whenever they start. What will they be? How severe this time? (And next time? And the time after that?) I realize how lucky I am to only have to go through 6 chemo sessions. There are plenty of people who go through chemo for 6 months, going once a week. Let alone people who go into remission or whose cancer is "cured," only to have it come back again and have to go through chemo again. I am definitely lucky.

Today I went to the cancer center for my pre-chemo blood work. My appointment was at 3:00 p m and I knew that L, one of the women I met at radiation who was undergoing treatment for breast-cancer, had her last appointment today at 3:30 p m. So I stuck around after the blood work and went downstairs to be there when she rang her bell! It was nice to share that moment with her. She told me about a weekend retreat taking place at the end of April, first of May, for cancer survivors at some sort of a resort in Vermont. It is actually free to cancer survivors attending the first time. We're making plans to go, and to try to get M, the other women I met at radiation, to go with us.

I have to manage to stay up until 10:00 pm tonight to take my 5 Decadron pills and get up at 5:00 am tomorrow morning for the next 5. Mmmm.... steroids, yum.

Okay, here we go again.

Peace.

Sunday afternoon

A photo from my radiation "graduation" day -- the 3 radiation techs assigned to my case, sitting on gurney in front of "my" zapping machine.




Another -- me "ringing the bell".

My nerves are trying to provoke me, rile me into outright anxiety about chemo on Wednesday. I realize it is not actually the chemo itself that make me anxious, but the after effects. I have a sense of being more "run down" now than when I started the whole process, even though that was after surgery. Anyway, I had my Emend (expensive anti-nausea) prescription refilled. I'm girding my post-Big D loins. I'll be ready.

Peace

Saturday morning

Jessie and I went to the park this morning! It was brisk, hat weather (especially for those of us with poor bare skulls), but not wrap-up-in-scarf-and-still-freeze-your-face weather. In fact it feels - although I'm cynical and don't want to count on this feeling - as if the corner between winter and spring may have finally been reached if not yet turned. There were more birds singing their morning songs. I heard a woodpecker, but couldn't see it where it perched high up in a pine tree, to tell what kind. A mourning dove's morose song reached me (but mourning doves stay through the winter). Squirrels abounded, appearing to delight in tormenting Jessie. A significant patch of the thick, yellowing ice on the smaller pond had melted through and the gun metal shaded water was visible. Could it be? Will spring actually arrive? On the way home, a flock of Canada geese - someone told me, J was it you? - that Canadian goose is a misnomer, the actual scientific common name of the bird is Canada goose - anyway, a V-formation of them flew overhead, heading north. A sign.

Peace.

Friday evening

Dr. R called today. She and Dr. VR got their stories straight. The result - it's Chemo #4 for me next Wednesday, Feb. 24th. Blood work on Tues, Feb. 23rd. NuLasta shot on Thursday, Feb. 25th. It will be ... interesting to see if I can keep up my work schedule - more or less - over the next 6 or 7 weeks. Here we go again.

Meanwhile, I have finished a draft of what I"m calling "What I've Learned (So Far) From Cancer." It's a letter to myself. but I thik I'll share it here. Probably tomorrow.

Peace.

Thursday night

25 zaps down. 0 zaps to go! Well, I rang that bell and I rang it hard, 3 times. So hard it double-rang - clapper on both sides of the bell - and scared people. I received my graduation "diploma" and took photos with the radiation techs and others. There's a good one of the 3 techs who worked with me most of the time sitting on the gurney I lay down on every day, in front of the giant radiation machine. And there's one of me with the bell. As soon as I can get them uploaded to my laptop, I'll post a couple here.

I had met with Dr. R earlier that day; it was good to see her, reminded me of why I like her. She said she needed to talk to Dr. VR, the radiation oncologist, about when I could start chemo. But I'd seen him only the day before and he said she would decide. Who's on first? Oh well, they'll figure it out. Meantime, I don't yet have a start date for chemo but I can live with that. For good measure, I had one last visit from the Big D that day. Since then, so far, so good.

I'm working on a thing I'm calling What I've Learned From Cancer (So Far). When it's a little further along, I'll share it here, maybe in pieces.

Meanwhile, it's back to 9 hour work days and settling in to feeling "normal". I'm looking forward to the weekend, the park and my walks with Jessie.

Thanks to all who wrote, called, commented and generally encouraged me to ring that bell. I rang it for you, too.

Peace

Tuesday morning

24 zaps down, 1 lousy zap to go.

Thanks to all for your support through this seemingly endless radiation therapy. I saw Dr. VR yesterday. He told me I should do something "celebrate". I told him that's hard to do when I'm seeing Dr. R today and finding out when chemo starts again. I will miss the group of radiation techs. They are competent, positive and fun, while always being kind. I'll miss the two women I got to know somewhat - L and M. Maybe it was the regularity of seeing them every day, even if for just a brief time. Dr. VR said the radiation side effects - diarrhea, more frequent urination and tiredness - will gradually improve. I wonder how gradually.

Today is my last day of parking; tomorrow I go back to riding the bus and to regular work days. I think for a while I"m going to try to work true 8 hour days - meaning probably 9 hours, to account for lunch.

Human beings are weird. We are - perhaps by genetic makeup - so instinctively conservative. However things are for us, we may complain about our present circumstances but we get used to them, and we view change with trepidation. So chemo was scary to me until I went through it, and then it was bad, but it began to seem "normal" when it was time to move on and face radiation which I hadn't experienced and so seemed worse, and now radiation has come to seem "normal" and its side effects are at least familiar. Viscerally I feel the cells of my body calling out to me, Hey! You! Let's just leave things as they are! Nope. Gotta kill any of those cancer cells trying to do an Osama Bin Laden and use my body parts as the mountains of Pakistan. We'll hunt you down and wipe you out.

I'm gonna ring that bell today after my last radiation treatment, but not just for me, but for all people with cancer. Hey cancer cells everywhere, hey tumors - we're gonna get you!

Otherwise, peace.

Thursday evening

22 zaps down!!! 3 zaps to go!

I have been feeling better - though not perfect - since taking Imodium on Sunday. Big D seems to have moved on and, if anything, the opposite problem seems to be lurking. Man what a sign of getting old... to have to spend so much time thinking about, worrying about, dealing with and even - sorry - sharing all of the foregoing - about your own bowels. Geez. There is a Jewish prayer that traditionalists say every morning as well as after every use of the toilet that thanks god for creating man with "many openings and cavities," going on to say that "It is obvious and known before your throne of glory that if but one of them (those openings and cavities) were to be ruptured or but one of them were to be blocked it would be impossible to survive and to stand before you." Ain't that the truth!?!

My radiation schedule was changed this week - yesterday I went in at 7:30 am because we were supposed to get a snow storm - 8 - 16 inches they said. The whole state freaked out. In the end we got 3 inches or so where I live although I think down on the shore they got 4 - 6.

I learned that when you finish your radiation treatment, there is an old-fashioned bell - the kind you pull a rope to ring - across from the nurses' station on the radiation floor that you are supposed to pull. That tells everyone in the department that another patient has finished his or her treatment. They all come out of the woodwork and applaud you. And you are handed some kind of little scroll, like a diploma. Of course, my "graduate school" is another round of chemotherapy, but I will be glad to put the radiation behind me.

I think the main thing about the radiation treatment that makes it handleable (if that's a word) is that each day it only takes 5-10 minutes. It's possible to relax, deep breathe, and frankly just avoid thinking about the giant machine that is rotating around you for that short period of time. It zaps you from below, then from the left, then from the top, and finally from the right. You can hear it whirring while it's working. I always wonder if the whirring is a person pushing a button for some period of time, or if the machine has automatic settings - this patient gets 8 seconds of zap, that one gets 12 seconds of zap. I wonder, because the length of the whirring doesn't always seem to be the same. I've even tried to count to see if the side zaps are longer than the top and bottom zaps. I guess I could ask, but I think the whole thing is just an exercise I go through to keep my mind occupied during the zapping. The room in which the zap machine is located has panels painted with peaceful woodland type scenes on them all around the top 2+ feet of the ceiling. So when you lay back to be zapped, and look up, you see woodland scenes above you in every direction.

I had been going to radiation for 10 days or so before I realized how big the room was, and the other stuff that was in it. All I saw before then - and really all I ever look at still - is the table I lay on, the machine, and those woodland scenes. I have made 2 friends through the 22 radiation treatments - M and L, the two women with breast cancer whose appointments are at or around the same time as mine - and we've agreed to stay in touch after the treatments are over. M is from Atlanta originally.

Anyway, I'm doing okay. Perhaps beginning to sense a rising .... emotion (not sure what emotion at this point) in response to the knowledge that Chemo is Coming. Maybe a week or two break between radiation and chemo isn't a terrible idea after all.

Peace.

Sunday morning

Apparently I spoke - or blogged - too soon. Was feeling much better yesterday, especially in the morning when I posted here, but in the afternoon I had another bad diarrhea attack. I gave in and took the Imodium but was kind of wiped out the rest of the day and was afraid to eat much, so I had eggs and toast for dinner. I feel better this morning, but did not get to the park with Jessie this morning. Maybe I"ll try to go at the end of the day, to see the sun setting rather than rising. If I am feeling okay. The thing about the Big D is its 2 prong whammy: 1) it just wipes you out, probably in part from dehydration (I was careful to drink a lot of water after yesterday's episode), and 2) it makes you afraid to eat much, doesn't seem worth it since whatever you take in may just be passing through, so to speak.

Anyway, I hope to get back on track digestively today and be okay by tomorrow (and stay that way) when the zaps start again.

Peace.

Saturday morning

Zap #15, #16, #17, and #18 down, 7 zaps to go

Jessie and I got to the park this morning. Cold but not unbearable. We went kind of late for us, about 7:00 am. The sun was already up. Quiet in the park. Walking the east loop, hearing the snow crunch under my boots, feeling the cold, seeing the icy pond surface covered in snow (it's been cold enough that the snow cover on the pond surface hasn't melted), I realized I felt ... happy.

I feel better, and have since Wednesday or Thursday. Dr. VR advised my buying (and taking) Imodium for the Big D, but as early as Sunday and Monday I tried to adjust my diet to stick to low fiber, and it seemed that by Wednesday I was feeling better and by Thursday I could really tell the difference. I had a brief relapse yesterday but not terrible and today I feel well again. So I'm holding the Imodium in reserve.

Thanks to all who lent support during that rough period in particular. J from out west, as always - you're the best, and Crazy L from Music City and G from the old Hood and Helen as always. Thanks, too, to G from GA for sending me the wonderful CD. A good cause and good music. I talked to my son and my grandson this week. That was a high point. My grandson informed me he was "trying to read to Mama." According to my son, what that actually meant was - he was trying to get Mama to read to him, while also watching a DVD, listening to a CD, playing with a new wooden train and doing something or other on the Internet. Whew!

Cancer-wise news, I"m getting to know better the 2 women that I tend to run into at radiation, L and M, both having radiation for breast cancer. Yesterday I heard a little how the radiation has caused burns and sores on their skin. Made me feel lucky as, so far at least, I've had none of that. Sometimes when I finish radiation and I'm back in my car in a small, closed space, I think I can smell the scent of burned flesh - mine - but I think it's a hallucination. I've had no physical sign of any burns or discolorations. (L said she has a place on her breast that is as brown as M is - M is a lovely chocolate African-American). 7 more zaps to go - all of next week, and 2 days of the following week.

I met with Nurse S this week. She said that there is usually a gap of a couple weeks after radiation before starting chemo. I think the only reason she said that is because she knows I want to start chemo sooner and she is a kind of Grinch-person. I know the type; in fact, I've BEEN the type myself, hopefully not any more. Don't let people get their hopes up, always bring up the down side. Not death and doom, just the niggling hard bad side of things. Into hope-dashing on a day-to-day versus life-and-death scale. Icky. Anyway, it's not up to Nurse S - after next Tuesday, she'll be history. It's up to Dr. R, whom I have an appointment to see next Tuesday.

I learned something else about Dr. R - I remember writing here when I first met her, that she told me she had been at Dana Farber or Sloan Kettering before being here in Ct, I couldn't remember which. This week I learned it was Dana Farber. I found out when I mentioned her name to the new person at work, the guy who told me that he had had leukemia many years ago. This week he was telling me about his diagnosis (he was just 28 years old!), the treatment and so on. Turns out he had what was at the time an experimental bone marrow transplant where they use your own bone marrow after treating you to the point where the cancer is down to 2% or something like that. Anyway, he had the experimental marrow transplant at Dana Farber and Dr. R was his doctor. There was another, more senior doctor in charge. Dr. R was a young associate, but she was the one he saw on a regular basis over the many months of the pre, during and post transplant process. He remembers her with deep affection, and it was a real validation of my own sense of Dr. R.

I also asked Dr. M's office to confirm with the disability insurance company that I was able to work full time, and my short-term disability ended on Wednesday (or maybe it was Tuesday, I forget). Anyway, although I'm not changing my hours - which have been 7:00 or 7:15 am to 3:00 pm - which is obviously already more or less "full time" - until the radiation is done, I no longer have to worry about the disability claim. My supervisors have been clear that I can be flexible, as need be, to make doctor's appointments, and so on. So that horrible disability claim business is - hopefully forever - over with.

I'm feeling good. I'm hoping the mega-snow storm isn't causing too much hardship down south of us. I'm hoping that the most advanced industrial and technological countries in the world can figure out how to actually get water and a little food to hungry people - children! - in Haiti after more than 3 weeks! I'll bet you if an earthquake hit Hollywood, the movie stars wouldn't be living under their duvets waiting to get water and rice! Screw racism and capitalism.

Okay, I'm calmer now.

Peace.

Monday evening

Zap # 14 down, 11 zaps to go.

By Friday's zap #13, I was really wiped out and knew I needed the weekend to rest. David and I did go to my synagogue to a dinner Friday night but ended up leaving in the middle of the guest lecturer - it was 8:30 pm and that's about 60 minutes past my collapsing time.

On both Saturday and Sunday mornings Jessie and I had a good walk in the park - very cold, that bone shaking cold, but a good walk. Seemed pretty devoid of wildlife, even the birds seemed subdued and the usually ubiquitous squirrels were nowhere to be seen - to Jessie's immense disappointment. She lives in the unreasonable hope that she will one day catch one of the little critters, wring its little neck and ... and then what? I doubt her dog thoughts go further than that.

Later Saturday morning I met my girlfriends - V, S and M. That was good, although I wasn't feeling great and generally I had a kind of rough weekend. The Big D - diarrhea - appears to have found my address and moved in and made itself at home. For how long, I don't know. This is definitely not the result of suggestions from my doctor and nurse. This is the real thing. It definitely wears you out. I pulled out the sheet on diet that Nurse S - bless her unsympathetic little soul - gave me that gives guidance on low fiber foods vs. high fiber foods. How strange to spend decades teaching yourself to always choose high fiber only to end up not being able to tolerate it. Who thought a "diet" sheet would say that "any cheese" is okay but no raw fruits and vegetables are!

Anyway, I was kind of peaked all weekend and again today at work, although slightly better today, perhaps as a result of trying to steer clear of the "worst" high fiber foods. I am not going to Tai Chi tonight - which I usually love - but I am tired and I want to curl in a ball and lay low like a veg (but only a cooked veg, not raw!)

I'm feeling a little low in general, perhaps in response to hitting the half way mark of the cancer treatment. Supposedly having climbed the hill to this point, it's down hill from here back to "normal" - that's what various people - radiation technicians, Dr. VR, friends - keep reminding me. But I guess the reality of the whole thing is with me right now: Stage IIIA cancer; more chemo; seeing an oncologist every 3 months; more CT scans; on and on. It's never over; it's a changed life.

But ,,. life is good. And every day keeps the sun out a little longer and helps me believe that life is stirring in the cold veins of the trees and the tangled branches of the rhododendron scattered through the park. Somewhere warmer I like to think there is a laughing duck holding court, telling all who will listen about this great park in Connecticut that she's coming back to as soon as the buds burst out.

Peace.