My computer has been in the shop, aka the Apple Store, to fix a popping sound that occurred every time I opened and closed it. It needed a hinge replacement, like a hip replacement for computers.
So that is why I haven't posted.
These are some of thing things that happened.
I got an email saying that my blog made Healthline's list of the top leukemia blogs of 2015. According to the email, "Healthline’s editors carefully selected each winner based on quality, frequency of updates and contribution to the community."
Here is the blurb: Ronni Gordon, an avid runner and tennis player, felt winded while running a 10K race. For many, that would be par for the course. For her, it was the first clue that something was wrong. In 2003, she was diagnosed with acute myeloid leukemia (AML). Now, she’s been living cancer-free for more than six years, but cancer isn’t far from her mind. Ronni is a writer and Running for My Life: Fighting Cancer One Step at a Time is her journal.
In other news, I saw two opthamologists in one week, one a cornea specialist and the other a glaucoma specialist. There is no such thing any more as a plain eye doctor. Dr. Dana, the cornea specialist at Mass General, has been following me for possible Graft vs. Host of the eye. He thought I previously had it, but now, he said, with continuing use of Restasis, my eyes look good. I do have dry spots in my right eye due to surgery right near the tear duct to remove a squamous cell cancer. I need to keep putting Genteal gel in it.
Meanwhile, my optometrist wanted me to see a glaucoma specialist due to a test he gave me that was either suggestive of possible glaucoma or just something that shows up with very near-sighted people like myself. Also my mother had glaucoma. But thankfully I don't.
When the nurse was checking me in, she said she was going to ask me some questions that might not seem applicable to my eyes, such as, "Have you ever had any blood transfusions"?
I said, "Yes, a million of them. I had leukemia."
When she went to write it down, she repeated it incorrectly to me, saying, "You have leukemia."
This is one of those instances where one little misspoken word can set off an alarm, such as when I was in the hospital sick after graft failure, and a physician's assistant, in telling me about the next step in my treatment, said, "Assuming you get better..." and I dropped my spoon and my sister said, "She doesn't like that word," because it made me think she wasn't sure about it.
Anyway, the nurse at the eye doctor's said to me, "So you're in remission," and wrote that down, and I wanted to say, no, it's better than that, I'm cured, and would you say to a woman who had breast cancer, I'm going to write down you have breast cancer, but of course it makes no sense to get into it. And I don't like to use the word cured anyway because I think it's a jinx. Maybe someday I'll get over that.
Tuesday, September 29, 2015
Tuesday, September 22, 2015
Pain in the arms
Yesterday was not my best day at the Kraft Blood Donor Center, where as you know if you have read about this before I was donating my sunburned, new and improved blood back to myself.
First of all, I came in unrelaxed and 15 minutes late because I had driven myself and despite drinking a shot of the natural energy drink Yerba Mate I got so sleepy that I got off the Pike at the Route 9 Framingham exit looking for a Starbucks. It was less than a mile down the road but just getting off the highway woke me up so I didn't stop after all.
My nurse, Kim, said she could do the usual six cycles anyway because my blood usually flows well. But it didn't turn out that way. First, she had to wiggle the needle around in my left arm because it was not drawing well. It started OK but then got sluggish. She said she was sorry but she would have to change arms. I closed me eyes and tried to go to my calm place.
When I went twice a week, I alternated left and right, but now with once a week they said it was OK to do the same side, and as a righty I have been choosing left. But I guess my the veins in my left arm got tired. Also when my hematocrit came back a little higher than last week (but not as high as the week before), they said it was a sign that I had gotten dehydrated again, thereby causing my veins to be less puffy. (It probably came from getting drenched in sweat after spinning at the Y the day before. I thought I was keeping up, but I guess it was not enough.)
So she went to the right, where she found a vein that worked, but it was pretty thin and the needle hurt most of the remaining two hours. When that nice Dr. Savage came around to check on me, I had tears in my eyes and said, "I am not my usual cheerful self."
He and the nurses Kim and Tina were super nice and distracted me and cheered me up. Tina thinks it's funny that I had turned her on to the Netflix series Grace and Frankie and that she had finished it and I had never gotten around to it. That's probably because I only do it at ECP and last time the internet was not working. So I brought it back up and there was Lily Tomlin's face just staring at me and I had to laugh. Dr. Savage said he was looking for a series, and after he caught a glimpse of it on my screen, he chuckled and said that would be his next.
I thanked him for cheering me up and then I focused on finished the series, which, unexpectedly, ended on a bit of a cliffhanger. Tina said she wondered if it had been renewed, and I looked it up and saw that it was. By this time I was done, but, even though we had cut it down to five cycles rather than the usual six, I wasn't finished until after seven.
I went to Margaret and Nick's, where I got a hug, a good dinner, a beer and some good cheer. I slept over because today I have a new adventure, an early morning visit to the Massachusetts Eye and Ear Infirmary to visit the cornea specialist who monitors me for possible Graft vs. Host of the eye. The last time I went there, I had an afternoon appointment and waited more than two hours. Hence the choice of the early a.m.
Then, thanks to cousin Betsy Brody who sent me the recipe for my grandmother's honey cake, I am going to caffeinate, go home, get the ingredients, bake the cake, hopefully get a little exercise, and head to Carolyn and Chip's for the Erev Yom Kippur meal with that branch of my lovely extended family.
And, did I say, also take a deep breath?
First of all, I came in unrelaxed and 15 minutes late because I had driven myself and despite drinking a shot of the natural energy drink Yerba Mate I got so sleepy that I got off the Pike at the Route 9 Framingham exit looking for a Starbucks. It was less than a mile down the road but just getting off the highway woke me up so I didn't stop after all.
My nurse, Kim, said she could do the usual six cycles anyway because my blood usually flows well. But it didn't turn out that way. First, she had to wiggle the needle around in my left arm because it was not drawing well. It started OK but then got sluggish. She said she was sorry but she would have to change arms. I closed me eyes and tried to go to my calm place.
When I went twice a week, I alternated left and right, but now with once a week they said it was OK to do the same side, and as a righty I have been choosing left. But I guess my the veins in my left arm got tired. Also when my hematocrit came back a little higher than last week (but not as high as the week before), they said it was a sign that I had gotten dehydrated again, thereby causing my veins to be less puffy. (It probably came from getting drenched in sweat after spinning at the Y the day before. I thought I was keeping up, but I guess it was not enough.)
So she went to the right, where she found a vein that worked, but it was pretty thin and the needle hurt most of the remaining two hours. When that nice Dr. Savage came around to check on me, I had tears in my eyes and said, "I am not my usual cheerful self."
He and the nurses Kim and Tina were super nice and distracted me and cheered me up. Tina thinks it's funny that I had turned her on to the Netflix series Grace and Frankie and that she had finished it and I had never gotten around to it. That's probably because I only do it at ECP and last time the internet was not working. So I brought it back up and there was Lily Tomlin's face just staring at me and I had to laugh. Dr. Savage said he was looking for a series, and after he caught a glimpse of it on my screen, he chuckled and said that would be his next.
I thanked him for cheering me up and then I focused on finished the series, which, unexpectedly, ended on a bit of a cliffhanger. Tina said she wondered if it had been renewed, and I looked it up and saw that it was. By this time I was done, but, even though we had cut it down to five cycles rather than the usual six, I wasn't finished until after seven.
I went to Margaret and Nick's, where I got a hug, a good dinner, a beer and some good cheer. I slept over because today I have a new adventure, an early morning visit to the Massachusetts Eye and Ear Infirmary to visit the cornea specialist who monitors me for possible Graft vs. Host of the eye. The last time I went there, I had an afternoon appointment and waited more than two hours. Hence the choice of the early a.m.
Then, thanks to cousin Betsy Brody who sent me the recipe for my grandmother's honey cake, I am going to caffeinate, go home, get the ingredients, bake the cake, hopefully get a little exercise, and head to Carolyn and Chip's for the Erev Yom Kippur meal with that branch of my lovely extended family.
And, did I say, also take a deep breath?
Sunday, September 20, 2015
Somewhere, an almost forgotten birthday
Somehow, I have lost track of a birthday.
I wrote all but one of my birthdays down in the little blue spiral notebook that Diane gave me when I first got sick a dozen years ago. I had a feeling it was Sept. 18, but when I went back to check in the "new and improved" Patient Gateway site where I used to be able to see all of my appointments for the past 12 years, that information seems to have vanished. I wrote Melissa, but it was late on Friday when it occurred to me; I'm sure she'll write back eventually, and then I'll write it down for future reference.
In any case, the date of my first transplant is somewhere around here.
I wrote in the book: last day of work, Friday April 4 (2003), and hospital admission, 4/9/03. It shows you how fast I got swept out of the life that I knew. On a Friday, Ray and Mimi were helping me squirrel through the pile of papers on my desk to find the sheet containing my low blood counts so I that I could give them to the receptionist at Dana-Farber. That Monday, my tennis friends Korby and Kit drove me to the Dana-Farber clinic, where I had taken my bags because I knew I wasn't going home. Two days after that, I was hospitalized for my induction round of chemotherapy. Six months later, I got the first of my four transplants.
I quietly celebrated "new birthdays" one, two and three, but never made it to the magical five.
I wrote this down in the book: relapse, August, 2007 (after Korby and I had played and won in the Districts, how strange is that); admission, Aug. 10, 2007; transplant #2, Oct. 18, 2007; graft failure, April 21, 2008; transplant #3, June 10, 2008; sick and relapse, Dec. 21, 2008; transplant #4, Jan. 31, 2009.
That is definitely a lot of birthdays.
Of course the only one that matters is the last one, and as I think and say all the time, thank you Dana-Farber and Denise for giving me this beautiful fall day and the rich, full life that I have.
I wrote all but one of my birthdays down in the little blue spiral notebook that Diane gave me when I first got sick a dozen years ago. I had a feeling it was Sept. 18, but when I went back to check in the "new and improved" Patient Gateway site where I used to be able to see all of my appointments for the past 12 years, that information seems to have vanished. I wrote Melissa, but it was late on Friday when it occurred to me; I'm sure she'll write back eventually, and then I'll write it down for future reference.
In any case, the date of my first transplant is somewhere around here.
I wrote in the book: last day of work, Friday April 4 (2003), and hospital admission, 4/9/03. It shows you how fast I got swept out of the life that I knew. On a Friday, Ray and Mimi were helping me squirrel through the pile of papers on my desk to find the sheet containing my low blood counts so I that I could give them to the receptionist at Dana-Farber. That Monday, my tennis friends Korby and Kit drove me to the Dana-Farber clinic, where I had taken my bags because I knew I wasn't going home. Two days after that, I was hospitalized for my induction round of chemotherapy. Six months later, I got the first of my four transplants.
I quietly celebrated "new birthdays" one, two and three, but never made it to the magical five.
I wrote this down in the book: relapse, August, 2007 (after Korby and I had played and won in the Districts, how strange is that); admission, Aug. 10, 2007; transplant #2, Oct. 18, 2007; graft failure, April 21, 2008; transplant #3, June 10, 2008; sick and relapse, Dec. 21, 2008; transplant #4, Jan. 31, 2009.
That is definitely a lot of birthdays.
Of course the only one that matters is the last one, and as I think and say all the time, thank you Dana-Farber and Denise for giving me this beautiful fall day and the rich, full life that I have.
Saturday, September 19, 2015
Numbers go in the right direction, skin softens up
A few days ago, Melissa emailed me saying she had asked Diane at ECP to check on the kidney function that was elevated last week.
That was a little disquieting since I thought I was done with all that, but then I realized it was most likely due to dehydration. Taken to the extreme, dehydration can even cause kidney failure. I wrote her and asked if that was the reason; she said yes and apologized for not having mentioned that effect of dehydration.
In any case, I worked hard during the week to ameliorate the problem. Also it wasn't as humid so I probably did not lose that much in sweat. Just as George congratulates us on having a "mature shot" in tennis, I gave myself a little recognition for having a mature reaction to the email about my kidney function, in other words, I didn't jump to the conclusion that something dire was wrong.
I never got those results, although I did find out that my hematocrit was back down to around where it should be – 31 – compared to the high of 35, which, although usually normal, suggested dehydration in me because I have been lower due to the ECP.
In a follow-up email, Melissa told me the good news that my ferritin is down to 877. That is very big news because I have been working hard on that by making myself take Exjade most mornings to reduce the level, which I think was as high as 6,000 after all those blood transfusions. (Normal is 12-300 nanograms per milliliter.) I wish I could share that with Patricia.
I drove myself in on Thursday because I had a dermatology appointment at 1 p.m. at another location before my 3 p.m. ECP at Dana-Farber, and although on paper it might have worked out to take the rides, I could see a disaster waiting to happen if I went that route. Dr. Alyea had predicted that my skin would have sprouted nasty things due to my sun exposure over the summer, but in fact Dr. Lin only saw a few things to which she gave a light zap.
She said she could see that the ECP is helping my skin; pressing on my abdomen, she explained to a resident that I had previously had a hardening of the area – scleroderma – and now it is getting softer.
She did, however, tell me to apply chemotherapy cream to a flaky spot on my upper lip. I had a Mohs procedure to remove a squamous cell cancer there, and while it should be gone, the flakiness suggests that perhaps some is left. Hopefully the cream will take care of it so I don't have to get that surgery again.
Then it was on to ECP, where the needle went in fine, as compared to last week, when dehydration had caused my vein to flatten out, thereby requiring two unpleasant sticks.
My nurse on Thursday, Esther, is a pillow fluffer par excellence. She is the best one at getting me as comfortable as can be for the three hours that I am immobilized with my arm outstretched.
When I have the time, as I did on Thursday, I like to go onto the other side and thank the platelet donors and tell them the story of how an anonymous donor saved my life when I was at death's door.
Everyone seemed pleased, except for the nurse who, upon seeing my Metrocard bag, asked if I was a Yankee fan and was disappointed when said no.
That was a little disquieting since I thought I was done with all that, but then I realized it was most likely due to dehydration. Taken to the extreme, dehydration can even cause kidney failure. I wrote her and asked if that was the reason; she said yes and apologized for not having mentioned that effect of dehydration.
In any case, I worked hard during the week to ameliorate the problem. Also it wasn't as humid so I probably did not lose that much in sweat. Just as George congratulates us on having a "mature shot" in tennis, I gave myself a little recognition for having a mature reaction to the email about my kidney function, in other words, I didn't jump to the conclusion that something dire was wrong.
I never got those results, although I did find out that my hematocrit was back down to around where it should be – 31 – compared to the high of 35, which, although usually normal, suggested dehydration in me because I have been lower due to the ECP.
In a follow-up email, Melissa told me the good news that my ferritin is down to 877. That is very big news because I have been working hard on that by making myself take Exjade most mornings to reduce the level, which I think was as high as 6,000 after all those blood transfusions. (Normal is 12-300 nanograms per milliliter.) I wish I could share that with Patricia.
I drove myself in on Thursday because I had a dermatology appointment at 1 p.m. at another location before my 3 p.m. ECP at Dana-Farber, and although on paper it might have worked out to take the rides, I could see a disaster waiting to happen if I went that route. Dr. Alyea had predicted that my skin would have sprouted nasty things due to my sun exposure over the summer, but in fact Dr. Lin only saw a few things to which she gave a light zap.
She said she could see that the ECP is helping my skin; pressing on my abdomen, she explained to a resident that I had previously had a hardening of the area – scleroderma – and now it is getting softer.
She did, however, tell me to apply chemotherapy cream to a flaky spot on my upper lip. I had a Mohs procedure to remove a squamous cell cancer there, and while it should be gone, the flakiness suggests that perhaps some is left. Hopefully the cream will take care of it so I don't have to get that surgery again.
Then it was on to ECP, where the needle went in fine, as compared to last week, when dehydration had caused my vein to flatten out, thereby requiring two unpleasant sticks.
My nurse on Thursday, Esther, is a pillow fluffer par excellence. She is the best one at getting me as comfortable as can be for the three hours that I am immobilized with my arm outstretched.
When I have the time, as I did on Thursday, I like to go onto the other side and thank the platelet donors and tell them the story of how an anonymous donor saved my life when I was at death's door.
Everyone seemed pleased, except for the nurse who, upon seeing my Metrocard bag, asked if I was a Yankee fan and was disappointed when said no.
Saturday, September 12, 2015
Birthday party fun and paranoia in the night
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| Birthday boy, top, and Maddie |
Ran off and forgot to publish!
So far, a strange night.
Well, not exactly night. Early morning, 3:32 a.m.
Maddie had a great evening at Grimsby's birthday party. She ran around like crazy at Ken and Andrea's, allowed a birthday hat to be put on her, and did not complain when Grimsby snatched it off and ran away with it. She had some cake (a decorated bone made at Dave's Soda and Pet Food City), sat with friends by a bonfire, and had some other treats not usually on the menu.
She drank a lot of water and went to sleep OK but woke me up breathing at twice her normal rate. I brought some water up for her. She lapped it up. I looked up the number of the Veterinary Emergency Hospital Hospital in Deerfield on my iPhone and dropped it on the bridge of my nose. It made a decent cut.
I dialed the number and got Jackie, who asked if Maddie's gums were pink. They were. She said maybe the dog is just hot in my room. I said I had the ceiling fan on and it seemed OK. I wondered if there could be anything seriously wrong with her heart due to her breathing at twice her pace. I thought of a friend who called me years ago saying she had gone running with her dog in the heat and the dog got overheated and died.
Jackie said it was my decision. I decided not to go. Couldn't go back to sleep. Decided to go. It would cost more than $100 just to walk in the door. Put my clothes on and brought the dog downstairs. Tried to lie down on the floor next to her. She got up and walked away.
If she could talk, she would probably say, "Stop smothering me. Leave me alone, I'm just tired."
Maybe she was in a huff because Grimbsy grabbed the cake and ran away and his Mom and Dad had to break off a piece and give it to her.
She got up on the couch and settled down. Decided not to go. Sat down to write. 3:55 a.m.
Summer tennis team round robin at 10 followed by trip to Black Birch Orchard for wine and food.
Maddie resting peacefully on the couch.
Better get some sleep myself.
Thursday, September 10, 2015
Drink up. (Not coffee or alcohol)
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| Looking down at the lobby |
Kenny is a father of two whose main interest is in music production. We have chatted about this in the past. He is the one who keyed me onto the story about Igor/Alex.
This morning he told me that the company had a scheduling problem, namely that he had to pick some people up in Boston at 2 and bring them back to Springfield, and since they obviously would not want to wait to go back until I was finished at 6:45, he was talking to his supervisor to try to figure out what to do.
Igor was the only driver available in Boston. I said no way was I getting in a car with him again. They would either need to farm me out to another company or figure something else out. Kenny said he would drive the first passengers back to Springfield and then return for me.
When I was reviewing my counts with Melissa, I was surprised to see that my hematocrit had taken a big jump to a normal 35, compared to the slightly lower than normal 28.9 from last week's ECP, which is actually normal for patients getting that procedure since you lose some blood.
I thought that was impressive.
But actually, it was the opposite.
It turns out I had polycycthemia, an abnormally high red blood cell count due to increased concentration of blood. This can happen as a result of plasma volume loss after dehydration, excessive sweating, vomiting and diarrhea.
"Are you dehydrated?" she asked.
Come to think of it, I said, I guess I am.
When you play outside tennis as much as I (and the other crazies) do, you probably don't know how much fluid you lose through sweat. I bring water and Gatorade, and we usually have fruit, but I (we) should be finishing it even my thirst is quenched. Often, that doesn't happen.
I noticed in the past couple of days that I wasn't going to the bathroom that much and thought, hmmmm, I must be getting dehydrated, I should fix that. But I have written about this so I should know: It's hard to play catch-up.
Everyone at photopheresis says you need to be well-hydrated for the big needle to go in smoothly and the blood to run freely; I said I would go drink more at lunch, which I did, but you need to start doing this days before, not day of.
So when my nurse at ECP put the needle in, I felt it catch on something. I closed my eyes and felt her moving it around to try to get the blood to flow. She had to take it out. Dehydration had caused my vein to flatten.
A different nurse came over and applied a hot compress and gave me a a talking to about staying hydrated. She used a different vein and got the needle in. The rest was uneventful. I started to read The New York Times on my computer but quickly got sleepy and took a nap. You might think it would be difficult to fall asleep under the bright lights with so much activity going on, but it is easy. They say the procedure puts a lot of people to sleep. It definitely makes the three hours go more quickly.
My mouth is very dry.
First thing tomorrow I am going to start drinking. Water, that is.
Tuesday, September 8, 2015
Comment wasn't stupid after all
Somebody made a comment to me recently that, both in tone and content, I interpreted as belonging to the category of Stupid Things People Say to People who Have Cancer, or, thankfully, in my case, people who had cancer, but in some sense everyone who has had it remains a patient for life.
You can tend to be hyper sensitive, not just after cancer but after many misfortunes. Given a certain state of mind, you can get reactive, if not in words, then in how your body springs into over-alertness. At other times something might just float on past you, depending on your day or your mood.
The comment was more subtle than when I looked like a cancer patient. For example, it was in another class from the doozie, "You look like a concentration camp survivor" when I was bald and emaciated.
After this perceived "stupid" comment I wrote it up, leaving out identifying factors. But something kept me from posting it. Later I talked on the phone to a friend who said not to do it, it will only spread bad vibes. At that point I didn't need to post it anyway, because writing it got it out of my system.
Then, by accident, I discovered that this person had a whole other back story, and that what she said had nothing to do with me and everything to do with something painful in her life. It appeared in a new light. I don't know if this makes sense without details, but that's as far as I can go.
I can only speak for myself, but I have a sense that in these days of almost instant communication, we are too quick to hit send (on an email or text) or to hit post (on a blog or on Facebook). I can think of a couple of instances where I hit "send" on an email and then wished I had followed the advice of a different wise friend who said that when you are angry or upset, don't hit send until the next day when you are sure that's what you wanted to say.
In some cases, you have to say what you need to say.
In other cases, letting it go is better than letting it out.
I'm glad that in this case I took a step back.
You can tend to be hyper sensitive, not just after cancer but after many misfortunes. Given a certain state of mind, you can get reactive, if not in words, then in how your body springs into over-alertness. At other times something might just float on past you, depending on your day or your mood.
The comment was more subtle than when I looked like a cancer patient. For example, it was in another class from the doozie, "You look like a concentration camp survivor" when I was bald and emaciated.
After this perceived "stupid" comment I wrote it up, leaving out identifying factors. But something kept me from posting it. Later I talked on the phone to a friend who said not to do it, it will only spread bad vibes. At that point I didn't need to post it anyway, because writing it got it out of my system.
Then, by accident, I discovered that this person had a whole other back story, and that what she said had nothing to do with me and everything to do with something painful in her life. It appeared in a new light. I don't know if this makes sense without details, but that's as far as I can go.
I can only speak for myself, but I have a sense that in these days of almost instant communication, we are too quick to hit send (on an email or text) or to hit post (on a blog or on Facebook). I can think of a couple of instances where I hit "send" on an email and then wished I had followed the advice of a different wise friend who said that when you are angry or upset, don't hit send until the next day when you are sure that's what you wanted to say.
In some cases, you have to say what you need to say.
In other cases, letting it go is better than letting it out.
I'm glad that in this case I took a step back.
Saturday, September 5, 2015
Terrific day at the Open, bad night in my dreams
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| Donna, me, and Lori |
All those years living in New York, I never once went to the Open. I don't regret that, because our family had our own tradition of watching it in the comfort of our house in Atlantic Beach, with the breeze coming in from the ocean and my mother making tuna fish and egg salad sandwiches that we ate on stack tables in front of the TV.
Donna and I have gotten it down to a science. Instead of making a last-minute decision to watch a match in the general-admission Armstrong seats as we did the first year, when the line was too long for us to wait, we went straight there yesterday to watch defending champion Marin Cilic. We had no idea the match would be so riveting.
Our seats were so close that we could hear the balls on the racquets; we must have been the envy of many who came in later looking for seats as the stadium filled up.
We didn't mean to stay as long as we did – more than three hours – but we got so into this intense, rollercoaster five-setter that we couldn't possibly leave. After lunch, we sat closer to the court than our assigned nose-bleed seats in Arthur Ashe, which you can do this early, and saw Novak Djokovic beat Andreas Seppi in three sets.
After such a fun day you would think tennis balls would dance in my head all night, but instead, the flip side of the shiny coin revealed itself.
In my nightmare, I was diagnosed with kidney or stomach cancer, I can't remember which. My doctors said I had only three or four months to live. It was so advanced they could not offer any treatment. I didn't know how to tell my children. I thought maybe they had it wrong, but just in case they didn't, I had to figure out how to face my own death. This obviously stems from the real life issues that thankfully have not done me in.
But in the dream I realized that if I died, I would probably see my parents.
I don't know if this is a good dream or a bad dream.
Well, at least I woke up to find out that none of that was true. I had Donna to call on the phone to go over our day and things to do that were all good, including Justine's class at Serenity Yoga, which was a good balance to yesterday's hectic pace.
I skipped my own tennis today to give my skin a break, following the strongly worded advice of Ellen, the physician's assistant at ECP, who, when I pointed out to her suspicious spots on my skin, reminded me that the procedure makes your sun super sensitive.
It would have taken more than heat and humidity for us to relinquish our seats, reminding me of that feeling you have when you find a perfect parking place in New York and you don't want to leave.
It was fun to watch Cilic play the crowd afterwards when hitting balls into the stands. He looked so fearsome doing his job, but when he went out to hit the balls he had a big smile on his face as he turned to each section to see which one would clap loudest, therefore earning a ball.
Sadly, we did not prevail.
Thursday, September 3, 2015
Of serious things and silly things
I took a chance on using the car service to Dana-Farber for my now once weekly ECP today, and although it started out on a weird note, it ended up on a good one.
The driver who picked me up spoke into his phone asking for a directions to an address in West Springfield. I said I was not supposed to ride with other passengers, and he said he wasn't picking up another passenger, he was just getting gas.
I told him it would be impossible to get to my appointment on time if he went through West Springfield, to which he replied, that is the only place his boss lets him get gas. I told him firmly that it was not going to happen, so he called his boss, who apparently told him he could not get gas anyplace else. I think this is the headquarters for the drivers, maybe where they have a secret pipeline under the street.
He shouted at his boss that he only had half a tank and no money, and he was scheduled to bring people back, and if he ran out of gas it would be his boss's fault. He talked on the phone loudly and in Spanish, obviously on personal matters, the whole way there, and when his boss called and obviously complained about having trouble getting through, he said it was too bad.
It was OK, though, because I put a blue shield around myself like my college friend Anne Outwater did for us when we biked through Prince Edward Island and dogs ran into the road. In other words, I blocked him out by making myself calm. I thanked him at the end of the ride, but he didn't even look at me.
As I was walking into the Kraft Blood Donor Center, I overheard a nurse asking an incoming patient how he was doing. The patient said of cancer, "It's the gift that keeps on giving." He said several new squamous cell tumors on his head were not looking good. I caught myself inadvertently touching the top of my head to see if I had any lumps. I know I have new squamous cell cancers on various spots on my skin that Dr. Lin will probably biopsy when I see her in a few weeks. I repeated to myself two words that one would not consider magical – in situ, in situ, in situ – meaning that they are a different type and just on the skin.
Something scary happened during the end of the procedure when a commotion on the other side of the room woke me up as I dozed. People rushed in and ran to a man whose bed was behind a privacy curtain. I couldn't see what was happening, but I heard him saying loudly, "I hate it when I lose control of my body!"
My nurse was among those who ran over and administered to him. She ran to a drawer to get him Ativan. Meanwhile my machine was beeping, meaning my three hours were up. I wondered how long it would take someone to come over. After a bit, a different nurse removed my IV. I stayed a few extra minutes with ice on my arm because it hurt as the result of the first stick hitting scar tissue and missing a vein. I got a double wrap. At least it was purple hearts on pink.
I heard the man talking normally to the people around him, so I knew it was all right. I said I knew that due to HIPPA I was not supposed to ask about specifics, but I asked if he was OK, and then my own nurse came over and said it was just an allergic reaction, and she was sorry.
When a car service picked me up at 6:45, I was not encouraged at first because the driver waved air freshener around practically into my mouth, causing me to inhale smoke from the car and whatever gross thing is in the air freshener. I told him I thought he wasn't supposed to smoke in the car, and he said a lot of the passengers do and I was the first one who seemed not to like it. Seriously? I rolled down my window.
At least it was a different driver who turned out to be quite pleasant. I was surprised that he asked how my day was, in contrast to the first angry driver. Driver #2 wanted to know how long I had been going to Dana-Farber (I told him since 2003!) and he said it must be a long way to go. What a relief to have a nice conversation after the previous crazy rides.
Our conversation turned to common ground: the funny answers and recent odd behavior of Siri. We both experienced the same problem in the last couple of days: Siri sending us in circles. We talked about strange things you can ask her, and when he told me to ask her what is zero divided by zero, I got the funniest answer, which made my day end on a better note than the one on which it had begun:
"Imagine that you have zero cookies and you split them evenly among zero friends. How many cookies does each person get? See? It doesn't make sense. And Cookie Monster is sad that there are no cookies, and you are sad that you have no friends."
My driver was on top of things.
Apparently this has lit up social media.
The driver who picked me up spoke into his phone asking for a directions to an address in West Springfield. I said I was not supposed to ride with other passengers, and he said he wasn't picking up another passenger, he was just getting gas.
I told him it would be impossible to get to my appointment on time if he went through West Springfield, to which he replied, that is the only place his boss lets him get gas. I told him firmly that it was not going to happen, so he called his boss, who apparently told him he could not get gas anyplace else. I think this is the headquarters for the drivers, maybe where they have a secret pipeline under the street.
He shouted at his boss that he only had half a tank and no money, and he was scheduled to bring people back, and if he ran out of gas it would be his boss's fault. He talked on the phone loudly and in Spanish, obviously on personal matters, the whole way there, and when his boss called and obviously complained about having trouble getting through, he said it was too bad.
It was OK, though, because I put a blue shield around myself like my college friend Anne Outwater did for us when we biked through Prince Edward Island and dogs ran into the road. In other words, I blocked him out by making myself calm. I thanked him at the end of the ride, but he didn't even look at me.
As I was walking into the Kraft Blood Donor Center, I overheard a nurse asking an incoming patient how he was doing. The patient said of cancer, "It's the gift that keeps on giving." He said several new squamous cell tumors on his head were not looking good. I caught myself inadvertently touching the top of my head to see if I had any lumps. I know I have new squamous cell cancers on various spots on my skin that Dr. Lin will probably biopsy when I see her in a few weeks. I repeated to myself two words that one would not consider magical – in situ, in situ, in situ – meaning that they are a different type and just on the skin.
Something scary happened during the end of the procedure when a commotion on the other side of the room woke me up as I dozed. People rushed in and ran to a man whose bed was behind a privacy curtain. I couldn't see what was happening, but I heard him saying loudly, "I hate it when I lose control of my body!"
My nurse was among those who ran over and administered to him. She ran to a drawer to get him Ativan. Meanwhile my machine was beeping, meaning my three hours were up. I wondered how long it would take someone to come over. After a bit, a different nurse removed my IV. I stayed a few extra minutes with ice on my arm because it hurt as the result of the first stick hitting scar tissue and missing a vein. I got a double wrap. At least it was purple hearts on pink.
I heard the man talking normally to the people around him, so I knew it was all right. I said I knew that due to HIPPA I was not supposed to ask about specifics, but I asked if he was OK, and then my own nurse came over and said it was just an allergic reaction, and she was sorry.
When a car service picked me up at 6:45, I was not encouraged at first because the driver waved air freshener around practically into my mouth, causing me to inhale smoke from the car and whatever gross thing is in the air freshener. I told him I thought he wasn't supposed to smoke in the car, and he said a lot of the passengers do and I was the first one who seemed not to like it. Seriously? I rolled down my window.
At least it was a different driver who turned out to be quite pleasant. I was surprised that he asked how my day was, in contrast to the first angry driver. Driver #2 wanted to know how long I had been going to Dana-Farber (I told him since 2003!) and he said it must be a long way to go. What a relief to have a nice conversation after the previous crazy rides.
Our conversation turned to common ground: the funny answers and recent odd behavior of Siri. We both experienced the same problem in the last couple of days: Siri sending us in circles. We talked about strange things you can ask her, and when he told me to ask her what is zero divided by zero, I got the funniest answer, which made my day end on a better note than the one on which it had begun:
"Imagine that you have zero cookies and you split them evenly among zero friends. How many cookies does each person get? See? It doesn't make sense. And Cookie Monster is sad that there are no cookies, and you are sad that you have no friends."
My driver was on top of things.
Apparently this has lit up social media.
Wednesday, September 2, 2015
Great expectations, anxiety dreams
Last night I woke up every hour because I was so excited about seeing "Waitress the Musical" at the American Repertory Theater in Cambridge tonight with twins Wendy and Lisa and my "twin" Margaret. I am lucky to have a prescient daughter who tells me when shows are going to be very hot. She clued me in, and I got the tickets when it was in previews, before the announcement of its Broadway run.
That is not exactly the point of this post. The point is that while having this great thing to look forward to, and coming from a fabulous dinner last night with my new friends from The Canoe Club, my dreams reveal the anxiety that lurks beneath the surface. For example, in real life, I have two scratches on my thigh, courtesy of an over exuberant dog. In my dream, Dr. Alyea, when giving me a checkup, noticed little dots in that area. He was worried that they were petechiae, those tiny dots that at one point in the thankfully distant past signaled low platelets. (As low as two. Hard to believe.) No they're not, I said, realizing that they were allergic reactions to a pill.
I guess it might be a sign of healing in your psyche when you dream of something potentially horrible and then realize it's not going to do you in.
In the rest of the dream, I had just returned from a great trip with friends, and when Dr. Alyea asked me where I had gone, I couldn't remember. I tried to call Emily, but couldn't remember her whole number and couldn't figure out how to access it in my contacts. When I finally reached her, she said we had gone to Paris and some Arabic countries, and I couldn't remember any of it.
I was grungy from the trip and had to take a bath, and when I got out and was wrapped only in a towel, Dr. Alyea said he might as well examine me then. He set up an exam table in a hotel room. Or maybe it was a school, because little kids were coming in there. I asked if they had to be in there, and he said yes, they had no place else to go.
Maybe this part of the dream was all about all those "little kids," i.e. the doctors so young they look children. And about the exposure.
But the sun is coming up, and a new day is drawing, with tennis at The Canoe Club, a dog to walk, and hopefully a nap before I make myself presentable, or as my mother used to say, get gussied up.
That is not exactly the point of this post. The point is that while having this great thing to look forward to, and coming from a fabulous dinner last night with my new friends from The Canoe Club, my dreams reveal the anxiety that lurks beneath the surface. For example, in real life, I have two scratches on my thigh, courtesy of an over exuberant dog. In my dream, Dr. Alyea, when giving me a checkup, noticed little dots in that area. He was worried that they were petechiae, those tiny dots that at one point in the thankfully distant past signaled low platelets. (As low as two. Hard to believe.) No they're not, I said, realizing that they were allergic reactions to a pill.
I guess it might be a sign of healing in your psyche when you dream of something potentially horrible and then realize it's not going to do you in.
In the rest of the dream, I had just returned from a great trip with friends, and when Dr. Alyea asked me where I had gone, I couldn't remember. I tried to call Emily, but couldn't remember her whole number and couldn't figure out how to access it in my contacts. When I finally reached her, she said we had gone to Paris and some Arabic countries, and I couldn't remember any of it.
I was grungy from the trip and had to take a bath, and when I got out and was wrapped only in a towel, Dr. Alyea said he might as well examine me then. He set up an exam table in a hotel room. Or maybe it was a school, because little kids were coming in there. I asked if they had to be in there, and he said yes, they had no place else to go.
Maybe this part of the dream was all about all those "little kids," i.e. the doctors so young they look children. And about the exposure.
But the sun is coming up, and a new day is drawing, with tennis at The Canoe Club, a dog to walk, and hopefully a nap before I make myself presentable, or as my mother used to say, get gussied up.
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