Friday, April 30, 2010

Friday night

Sorry for the delay in posting CT scan results: Dr. R said "Great scan!" and gave me orders to "Go have some fun!"

Good news. I am just at the very beginning of feeling more comfortable "post treatment." I think there must be a bell-shaped curve of feelings that now heads upward toward hope and optimism following "Great scan" news and should peak in about 3 months and then should start winding down as I head toward the next CT scan in 6 months and anxiety grows. But - who cares for now. I'm on the upswing. Still bald as a fuzzy cue ball, and as tired as if I had walked 20 miles at the end of every day. But spring is springing, it's supposed to be high 70's tomorrow, the park calls to Jessie and me and I have hope.

I see my new primary care doctor on Monday morning, Dr. T. I see the gyno oncologist, Dr. M, a week from Monday. And then as far as I know, no medical appointments whatsoever until I see Dr. R at the end of July. About then it will be time for my annual mammogram - geez, it never stops, does it?

More tomorrow after the park and - if I can get up early enough - the sunrise.

Peace. On earth. In our solar system. Galaxy. Universe. And beyond.

Wednesday, April 28, 2010

Wednesday morning

I'm feeling better. Later this morning is my appointment with Dr. R (after blood work). She should have the CT scan results. I keep telling myself I'm not nervous - what evil cells could still be lurking within me after the past 6 months? But I find I am a little nervous. One good thing to report to Dr. R is that the neuropathy in my feet seems to be slightly better; still there, but not as intensely. That gives me hope that with time it will diminish and eventually cease. I hope. On the other hand, I find myself frustrated with the persistence of weakness and fatigue. It's as if I "feel" - emotionally, mentally - good, even very good. But physically I can't stand up to that feeling. I'm weak. I'm tired. More now - when treatment is over - than during treatment. Of course, the treatment is cumulative, so the increased weakness and fatigue makes sense. Intellectual sense. Not emotional sense (is that an oxymoron?). At any rate, today is 3 weeks since the last chemo. In the past, I would have had another chemo today. But not this time; this time I'm done. I need patience. My guess is that 3 weeks from today, I'll notice an improvement.

Jessie and I were able to go to the park this morning (because I'm not going in to the office until after my appointment with Dr. R). We got there early - 6:00 a.m. - but the sun was already well over the horizon. This weekend I really want to try to get there earlier, as the sun is just poking its yellow head up. One thing I noticed today is that all of the female Mallards were ... missing ... while the pond was full of male Mallards swimming around aimlessly in circles. First I thought they must be unattached males who failed to find partners. Then I realized there were too many of them, and no females at all were visible. I kept wondering what it was they reminded me of - then I knew: they were like expectant fathers pacing outside the hospital delivery room in the days before fathers joined mothers to support them during the birthing experience. I think the Mallards have made their nests, perhaps in the brambles and brushy areas that edge the pond in many places, and the females are sitting on the nests and have kicked the males out, at least for the time being. I'll have to try to read about the Mallards' nesting habits and see if I could be right. It was a beautiful morning in the park. When we arrived, even with the sun up, the pond still had that horizontal halo-like effect of fog rising from its surface. Temperature difference I guess; likely the water was actually warmer than the air. But beautiful. Many birds singing The tulips likewise singing their colors. It was so cold last night, there were frost warnings in some areas. I saw some plants that seemed to have suffered from it. An odd spring - starting with 92 degrees a month ago and dipping to 32 or 33 degrees at the end of April.

One more thing. I have signed up to walk (not run) in the 2010 Komen Connecticut Race for the Cure. This is a race to raise money to fund breast cancer research. I decided some time ago that after my treatment finished, I would start to participate in a variety of events that raise consciousness about cancer, support cancer survivors and raise fund for research. This will be my first effort, and it feels personal to me because my mother had breast cancer twice, my mother-in-law (my kids' grandmother) died of breast cancer in her 50's, and although I had surgery to remove what I was told at the time (back in 2003) was "pre-cancer," Dr. R told me that's what they used to call a certain kind of cancer. So, according to her, I had breast cancer myself, just so early that all I needed was surgery, no radiation, etc. At any rate, if anyone cares to pledge any amount, however small, to support my effort in the Komen Race for the Cure this year, of course, I would appreciate it. But no one should feel obligated in any sense.

The place to read about the event or to pledge is:

http://transaction.komenct.org/site/TR/Race/NewWrapperRace?px=1382552&pg=personal&fr_id=1150

Thanks in advance!

After I see Dr. R and get my CT scan results, I'll try to let people know what she said.

Meanwhile, Peace to all - even to the Republicans blocking debate let alone a vote on Obama's and the Democrats' pitifully inadequate financial reform legislation. Schooling myself to not say/think/write -" except for the Republicans..." - is about as stomach-turningly difficult as downing a mocha barium cocktail, but perhaps both are worth the effort.

Peace.

Tuesday, April 27, 2010

Tuesday morning

CT scan #2 down (#1 was just before the surgery back in October - seems so long ago). Coincidentally, they gave me Mocha flavored barium to drink, and it was definitely better than the vanilla I had before. I still didn't finish both bottles of it - about a bottle and a half. The CT scan itself wasn't a big deal. I ended up with the Big D for the rest of the day - no big surprise. At any rate, thanks to H for offering to drive me and stay with me, and to David who did drive me there (and offered to stay with me). Just letting everyone know I survived it. I asked the guy who gave me the barium cocktail and then came and led me to the CT scan room and then returned to get me afterwards - whether you could request a specific "flavor" for the barium. He said yes. So I won't leave it to chance next time - mocha barium is my drink.

I see Dr. R tomorrow, and have blood work done.

Peace.

Saturday, April 24, 2010

Saturday morning

Another week. Two and a half weeks post treatment. Feeling better all the time, although I find myself frustrated that I am not getting past the fatigue and weakness more quickly. Which is silly. In fact, from my body's point of view, this is another post-chemo cycle, like the 5 before it. So no matter how many times I rub the little fuzz left on my poor skull, it's not going to grow any faster. I haven't even hit 3 weeks after chemo, which is -- going back to the 1st chemo -- when hair loss STARTS. They say - and my experience during the radiation "break" from chemo showed - that it takes about 7-8 weeks for hair to start growing back. I also still have the neuropathy thingy in my feet, which got worse through the 6 chemo cycles. At this point, I walk around on feet that feel as if they had fallen asleep (as they say) and started to wake up and gotten about half through waking up and stayed at that point. Kind of half numb, half pins and needles. If I am sitting down, I don't notice it much. But if I walk, it is a really weird and somewhat uncomfortable feeling.

Monday is the CT scan. I am nervous. I'm not sure what I'm nervous about. My brain says that after surgery removing the offending organ that dared to host a cancerous tumor (sarcoma no less), as well as its nearest neighbors, and after 6 months of chemo-therapy and 25 days of radiation, there can't be too much if any thing 'wrong' in there - hopefully every single nasty cancer cell got crushed - but I"m still nervous. Part of my anxiety is the procedure - or really, the barium cocktail. But I think some of it is also the "What if..." This is a question I have to learn to live with ... again. (Don't we all live with "what if" all the time? What if I get sick? What if I get cancer? What if I lose my job? What if...) I know my attitude about the "protocol" that Dr. M and his Tumor Board (ha!) came up with for me was to put my nose to the grindstone and get through it. Okay. That's done now. And I guess I feel up in the air. I am trying to learn to let that feeling be. To feel it as freedom. Not so easy.

Jessie and I went to the park this morning. We were late, from my perspective - we got there about 6:10 am - the sun was already well above the horizon, but perhaps because it is Saturday, we were the first people/dog there. That was nice. We also went on Thursday, when I got up at 5:00 and we made it to the park by 5:30 am. That day we actually saw the sun come up. Still no heron. I'm wondering again whether the heron I saw earlier this month was "my" heron, or a passing visitor. I'm wondering if she was "my" heron, if perhaps I saw her so much last fall because our park is her spring and fall home, and she goes further north for the summer. Perhaps because our spring weather was warm so early, she was thrown off, and just made a quick stop here before heading further north. I guess I'll find out. Meanwhile, the Mallard couples are interesting to watch. All the times I've been to this park, all the times I have seen the dozen or so ducks there, I never realized how they pair up, and stay in pairs. They move around and through the park, feeding in grass, in damp muddy patches left from the rain, in the little streamlets that flow out of the pond in a couple directions. I am looking forward to watching them with care now, and waiting for ducklings, many ducklings.

The tulip garden was in full bloom today. It's beautiful, but I still prefer the Rock Garden where Jessie and I pause sometimes. My favorite place in the park, its plantings less studied, more blending into the background. Jessie likes it because its rocks and rock wall surrounding enclosure is where a number of chipmunks live. She is mad for chipmunks. The difference between a chipmunk and a squirrel to Jessie is like the difference between a Big Mac and prime rib to a meat-eating human - chipmunks being the prime rib in Jessie's case. Not that she's ever tasted a chipmunk (to my knowledge) - but she would sure like to.

I made it back to Tai Chi and the entire class clapped to welcome me back (entire class! okay 7 people!). It was really really good to be back. I also got hugs and general well wishes. I now do my Tai Chi without a hat on - no one's eyes seem to have trouble seeing despite the incredible glare of the fluorescent lights bouncing off the whiteness of my skull. I find I'm comfortable about it. ( In fact, as soon as just a little hair starts coming in - away with the hats in general, not just at home, in the neighborhood and at Tai Chi! I've taken to wearing a baseball-type cap when I go out, except to work where I still wear a "normal" beret type cap)

Thanks to all who wrote, called, emailed and otherwise sent their wishes on the milestone of finishing the chemo. It meant a lot to me. As I come to the end of the treatment phase of dealing with a cancer diagnosis, I realize more than ever how lucky I am - in terms of the type of cancer I have, the treatment I went through, my general health, having insurance, having a job, having good health care close by - but as much and maybe more than ALL of that, because of the people in my life - my kids, who have been there all the way through a long process even when they have both been dealing with so much in their own lives, David who dealt with every hard thing the last 6 months handed out and kept coming back, my local friends - who likewise were always there to listen (and read), to offer support - including practical support like rides, and visits, and food and more - my far off friends, who have stayed in touch as if they were next door, by phone, email; my other family and David's family, co-workers - I mean, really, it's ridiculous almost how kind, how generous, how loyal and supportive everyone has been. It makes me almost (but not quite!!!) want to recommend a bout of cancer to everyone as a way of learning to appreciate the gifts your life has given you.

Now to keep that lesson in the days ahead - even while drinking that (hopefully mocha flavored) barium cocktail on Monday morning!

Peace to all.

Monday, April 19, 2010

Monday morning

A good weekend.

Jessie and I went to the park both Saturday and Sunday mornings. Saturday was grey, overcast, damp and chilly. Not many creatures around, except the Mallard couples and a few Canada geese. Sunday was brighter, a little warmer. Many many birds. I'm still working on my "Birding by Ear" CDs, listening and trying to remember, and one very common bird song I hear in the park is "Old Sam Peabody Peabody Peabody Peabody" - that's what it sounds like. Jessie and I were walking through the tulip garden - about 80% of which are now blooming - and I heard that song from very close by. I thought, "I want to SEE the bird making that song," and suddenly, there it was. A tiny brown/black and white thing on a bush right next to me. It's a White Throated Sparrow. It's song is much bigger than it is.

David and I drove down to the shore yesterday. We went to Ender's Island where there is an Episcopal-run retreat perched on the edge of Ender's Island and so surrounded by the water of Long Island Sound. There is a little public chapel open to the sea air. People come there and leave notes to God, prayers for the deceased, the sick, themselves. Little tokens - rosaries, stones, shells, candles. It's a moving place. (I admit I sometimes read some of the notes if it is possible to do so without disturbing them too much; yesterday there was one in which the author wrote to God to ask for help in dealing with his/her problems and so forth. They signed it, and then there was p.s. that read: "P.S. Keep up the good work." I love that.) We also went to Napatree Point beach in Rhode Island and walked for a long way. The sun was coming through incredible clouds. It was windy and cold, but beautiful.

Overall I am doing well, better every day. No more pills (I think I wrote here that Nurse E called and said my vitamin B-6 level was too high so to stop the B vitamins and also the magnesium.) I also stopped taking Senna, the plant based laxative, although I am keeping it close. I was having a touch of D - the small D rather than the big D - and stopped for a day and just didn't go back. So far, so good.

I've had a good first week of getting back to normal. Unfortunately now my attention is turning to a week from today when I have the CT scan, which I find I still am dreading. I think I am dreading it for 2 reasons, although until now I have focused on only the first. The first is the horrid experience of being forced to drink cold what seems like a gallon of cold barium in 45 minutes. But the other reason that I am beginning to identify and own up to is just plan old anxiety about what the CT scan will show. Of course I expect the chemo/radiation/chemo to have worked, but.... But what if it didn't? Do I think there is a "good" chance of that? Intellectually I guess I don't think so. Emotionally, I guess intellect doesn't matter very much. The fear is still there.

Tonight back to Tai Chi.

Soon I will sit down and write about my thoughts on the future of this blog. But not quite yet. My immediate thought is to keep writing until I get through the CT scan and follow up visits with Dr. M (the gynecological oncologist) and Dr. R (the medical oncologist who has shepherded me through chemo).

Peace to all as we approach the 40th anniversary of Earth Day.

Wednesday, April 14, 2010

Wednesday evening - 1 week post treatment

I'm doing well, better every day. I'll write more soon.

Today all I want to post is this link to another blog of another person dealing with cancer. Please check out Seun's blog at:

http://nigeria2014.wordpress.com/

Blessings to Seun.

Peace to all.

Sunday, April 11, 2010

Sunday morning

Yesterday was a long day. Apart from Jessie and my quick walk in the park, I went out only to run a couple errands. Otherwise read and slept. This morning we went back to the park. We arrived about 6:20 and already the sun was deep orange and above the horizon. Sunrise is earlier every day. Still feeling weak, we only walked the small loop by the pond, and then sat on a bench by the pond for some time. Jessie makes even the big otherwise bold Canada geese nervous, even though any of them could with one snap of their beak, scare the dickens out of her. We sat for some minutes. It was quiet. Then a big splash in the water almost in front of us - a new creature, not sure what. Possibly a fish, more likely a turtle. I didn't see it clearly enough, but now I'll know to keep an eye out. Many (MANY) red winged blackbirds. At one point one landed on a bush right in front of us, his red and yellow shoulder cap clearly visible. He sidled down a skinny bare branch of the bush he was on, even his tiny weight causing it to bow and bend toward the water. I thought he might actually fall in. Then he flew.

Today I'm expecting more bone pain - fairly bad last night but dealt with, thankfully, with Motrin - and weakness. Meantime, I just took my last 1/2 Decadron tablet (steroid). Hurrah! Now all I'm taking for the foreseeable future are B vitamins to address the neuropathy in my feet and magnesium to address muscle weakness, and Senna to off set the Big C, which is at least keeping the Big D at bay this chemo cycle. It is still surprising to find myself feeling "weak," not just tired and fatigued, but actually weak, finding it hard to get up off the couch and so on. I know from the 5 cycles of chemo already completed that there is a cycle to these post-chemo effects and I should and do have confidence that by Tuesday, certainly by Wednesday, I will feel much much better -- and this time, there is nothing looming 3 weeks away "promising" to bring back the same thing again. Instead I hope I can begin to believe that there stretch in front of me days, weeks, months of getting stronger, feeling better and even actually Good. In the meantime, patience.

Aunt M - Happy Belated Birthday! I'm sorry I missed it with a card or calling you. Between chemo, its after effects and work, I got befuddled, but I didn't forget in my heart. I love you.

Peace to all.

Saturday, April 10, 2010

Saturday morning

Made it. Chemo #6 is history. Now to make it through the down-slide of side effects...

As usual, chemo itself not hard, except it started late meaning it ended late. (Best thing about the day was a lovely longish coffee-breakfast with V who kindly drove me to the Cancer Center.) Then work was especially hectic on Thursday and Friday after the chemo, and I was in my post-chemo combo state of too-much-caffeine shakes, physical weakness, incredible tiredness, fuzzy thinking (they call it chemo brain). On Thursday I forgot to bring my Emend pill - $100 anti nausea med - with me to work which I needed to take at 8:00 am. I tried to find someone around to drive me home to get it so I wouldn't have to wake David and wouldn't have to take the bus home and back to work. Couldn't find anyone at work and available. I ended up reaching David and he brought it to me, which I felt bad about because it likely screwed up his day-time sleeping schedule, which is hard enough for him. Anyway, Thursday and Friday were a hard couple of days. Going home and asleep by 7:45-8:00 p.m. I did get to take Jessie to the park on Wed, day of the chemo, and again Friday, because my NuLasta shot was scheduled for Friday at 9:30 a.m., and we made it again today. None of these walks were particularly noteworthy - weather changing over to rainy and then yesterday and today cold. But we got out there. Mallard couples nesting in dry leaves on the pond shore. Unattached males drifting around. No heron. No muskrat. Even the birds seemed subdued but maybe it was how I heard them rather than how they sang.

Last night Jessie woke me up in the middle of the night - which she sometimes does - seeming to ask to go out. I just couldn't get up. Then I heard her throwing up so I did get up. Cleaned up after her and took her out - 2:30 a.m. She seemed fine and had no more problems, but when we got home, I couldn't go back to sleep. I read for an hour and went back to bed at 3:30 a.m. Then was up at 6:30 and we went to the park.

Anyway, I appreciate the calls and notes of support from friends sending congratulations to me for completing the chemo, but right now I am still focused on getting through the next 3-5 days. Some bone pain, handled with Motrin last night. Maybe it's my imagination, but each post-chemo slide does seem/feel harder. Time to nap. More later maybe.

Peace.

Sunday, April 4, 2010

Sunday morning

Well, I didn't get up early enough and we got to the park again at 7:00 am. Again, perhaps because it was Sunday, there were already quite a few other people there: walkers, runners, people with dogs. At any rate, no heron this morning. I am beginning to wonder if perhaps the heron I saw was not "my" heron but another, stopping at our pond for a break on its way further north. Which might mean that "my" heron is yet to arrive (Crazy L might turn out to be right, after all - she might not return until after my last chemo!) Of course, the Mallard couples, some Canada geese, and many many birds were going about their morning routines. We walked both loops of the park. I actually saw two gray squirrels engaged in ... well, mating. Interestingly, they engaged in foreplay. Some mutual grooming with their little hand-like forepaws, and licking each other's heads and shoulders. I'm not kidding. And then, one on top of the other, from behind, grasping her with those little paws. Squirrels!

Here's what I thought about today. I've lived in this city for more than 10 years. I've been to this park many many MANY times over that period. Of course, never with the regularity and at the consistently early hour that has been the case over the past 9 or 10 months. But I have spent many hours walking the paths of this park. But until last year when I began coming early in the morning, and especially after my cancer diagnosis, when these morning walks became somehow precious to me, I really can say that I walked through the park but not IN the park so the park didn't get IN me. Now, every time I am in the park I am paying attention to being there. And what's amazing is that day after day, week after week, month after month of going to the same place, and pretty much doing the same thing, there is always more to see, more to experience, more to learn, more to feel. Now that I am paying attention, the so-called "familiar" is actually deep uncharted territory.

Before; I treated time in the park the way we tend to treat a familiar drive made by car, where we might choose to drive a country road because it is more pleasant than a highway, but still it is just something done to get from one place to another that allowed me to think about other things. I wasn't paying attention. I was there in the same park walking the same paths by the same pond where presumably the same creatures live ... but I was not really "there." It occurred to me this morning that this is a metaphor for how I also have so often lived my life. I have just passed through it, without paying attention. But all the wondrous things I have discovered in this city park and its small universe also suggest that my life and its familiar routines are likely also filled with wonders should I just begin to pay attention. Harder to do on the scale of an entire life than on a morning walk, but likely also worth it.

My last (my LAST!) chemo is Wednesday at 10:00 - well, my appointment with Dr. R's PA - Dr R is apparently unavailable, for which I am sorry; I like seeing her - is 10 a.m. That probably means the pre-chemo drugs will be given to me about 11:00 or a little later, which means chemo would start around noon. At any rate, the late start should mean (especially since I have to get up at 5:00 a.m. to take the Decadron) that Jessie and I can make it to the park on Wed. morning! V has offered to take me to chemo, and we'll have coffee first. (I still remember Nurse E telling me to "eat breakfast" on the day of chemo; they have such faith - with good reason - in the new anti-nausea medication that they want you to eat!)

For some reason I find myself very nervous about this last chemo. I've tried to think about it and the only things I come up with are that the last couple chemos were harder, so I dread this last one being harder still, and the other thing - which I've mentioned before - being my odd reluctance to end the protective custody of cancer treatment where I have definitely felt that - as uncomfortable as "treatment" can be, at least cancer isn't getting me. In any event, treatment and these fears of treatment will soon be behind me. I am glad, though, that Jessie and I can likely get to the park on the morning of the last chemo. Ironically that fact makes me actually look forward to Wednesday.

Peace.

Saturday, April 3, 2010

Saturday morning

The heron wasn't at the pond this morning. I'm not sure what that means. Perhaps I missed her, although Jessie and I walked by the pond several times and also made our very soggy way around it entirely. No heron. Perhaps the heron I saw before was not "my" heron, but another one just passing through. Perhaps it was "my" heron but she has decided that our pond is no longer a good place. Too soon to tell. Perhaps I just missed her; that seems the most likely.

Of course many Mallard couples were out and about. And one Canada goose landed on the pond and, paddling in a small circle, called out slowly and loudly over and over "Honk! Honk! Honk!" Punctuated by rapid calls: "Honk-Honk-Honk-Honk-Honk!!!" As if he (or she - they seem to look alike) were shouting: "Hey! Where is everyone? Where are you? Where are you? Where are you?" I actually called out to him/her: "Calm down! They're around; they'll be back." It didn't seem to comfort him/her.

I saw what I think was the same red winged blackbird again; heard him first, saw him in the same tree again, its round branches now almost covered with small spring leaves, hanging down in a rounded hump looking like green dreadlocks. I also saw a pair of hawks, still not entirely sure what kind - probably either red tailed hawks (which are common around here) or red shouldered hawks. It appears they may have made a nest in our park. That would be neat. And then many many other birds, calling, singing. No muskrat this morning. We probably got there too late (7:00 am this morning). Maybe I'll be able to get up earlier tomorrow and see who's around just as the sun peeks over the horizon. That would be good.

This past week was a good week for me; I felt better every day. This despite daily doses of matzo (or even perhaps because of them?). I did go to the community seder at my synagogue on Tuesday night It was difficult for me mostly because it didn't start until 8 pm which is close to my normal bedtime. We didn't start eating until 9:45. My friend D kindly left "early" (11:15 pm) to bring me home. I guess I got to bed by midnight. It took me 3 nights, counting that one, of sleep to get back to feeling normal.

Yesterday I called in the LAST refills on my prescriptions for Emend (the $100/pill anti-nausea drug) and Decadron (steroid) to get me through the last chemo, which is next Wed., April 7th. I do want the chemo to be over with, but I'm still not rushing to go through it either. And the CT scan with its requirement to imbibe that nasty (mocha - yum - yuck) barium cocktail sits there just a couple of weeks later, hanging over post-treatment emotions like a big black cloud.

But today is beautiful. The sun shines, promises to warm the day and maybe the heart, too. The still spongy ground is absorbing the incredible amount of rain we had and brittle brown grass is greening. The trees must be drunk on all that rain, and are bursting out leaves everywhere. The bird crowd certainly seems celebratory. Hey, why not?

Peace.