I would have a week off from Boston if not for my consultation tomorrow at the Mohs and Dermatologic Surgery Center at Faulkner Hospital. I could have tried a back-to-back with ECP next week, but I wanted to take the first available, which is tomorrow.
Oddly, the squamous cell cancer on my jawline – the one that is the subject of the consult – has, at least on the surface, disappeared. Ellen, the physician's assistant at the Kraft Blood Donor Center, said she doubts that it will require surgery. But she doesn't like a flaky raised spot on the other side of my face and suspects that it may need to biopsied. (Thought process: Another biopsy would mean no tennis for the week. Funny that I'm more worried about missing exercise than I am about needles in my face.)
In filling out the patient history form, I had quite the conversation with myself.
For example, under the category "Emotional," they want to know if you have suffered from depression or anxiety attacks. I say to myself, "Wouldn't you, if you had my history"? Do I have anxiety attacks when I think that my fatigue is due to relapse or that each new suspicious spot is a melanoma? Am I sometimes depressed about what happened?" I check "No," because I am not currently suffering from these things. I erase and check "Yes," because I sometimes do.
Then, they want you to describe body location and month/year treated, and diagnosis for every non-melanoma skin cancer.
I write on one line: lip, neck, wrist, tear duct, all squamous cell cancers, treated with Mohs by Dr. Neel at Mass General, don't know the dates.
For the category Blood/hematologic, I don't know if I should check no problem or check anemia (low red blood cell count) and low white blood cell count. Do they mean now, in which case it would be no problem, or do they mean ever, for example when my red blood cell count was so low I needed transfusions and my white count was rock bottom when I had neutropenia after chemotherapy? I go for checking the yes boxes.
You have ONE LINE to write if you have had cancer other than skin cancer. That is a challenge. I write, Leukemia, BMTs preceded by chemo, 2003, 2007 (2), 2008. (Sounds awfully close to BLTs, but I'm confident they will figure out my shorthand.)
Good news on the transportation front: This past week, I did not get that horrible Westfield Transport. I will never get the again.
My driver from a different service said that they were shut down. Apparently I wasn't the only one complaining.
As I write about my medical history, I realize I am violating one of the rules of news writing: Avoid alphabet soup. This is the use of too many acronyms.
My health forms, and my posts, are laden with them.
ECP (Extracorporeal photopheresis)
BMT (Bone Marrow Transplant)
PDT (Photodynamic Therapy, the thing when my dermatologist burns the skin off my face, like she will do again in April)
VATS (Video Assisted Thoracic Surgery, the time when they removed the aspergillus fungus from my lung in 2003 before my first transplant.
And, my own contribution:
DALOS (Definitely A Lot of Stuff)
Sunday, February 28, 2016
Sunday, February 21, 2016
The time when I broke the rules that I had set
Wanting to do a good job on my first story for Healthline.com, I stayed up way too late Wednesday working on it, then ate ice cream, then wrote and rewrote the story in my dreams and woke up feeling terrible. Then tried to work on it some more on Thursday but had to go back to sleep, and didn't do any of the exercise I had planned.
So: Rule number 1, disregarded: Get off the computer at a reasonable hour because working on a computer at night can disrupt sleep. When I had a "real" job at The Republican, I might have taken my work home with me in terms of thinking about it or jotting some thoughts down, but I couldn't lug the computer home with me. Having a laptop is great but the downside is that it can lure you back in at all hours.
Rule number 2, disregarded: Get some exercise every day.
I felt like I had a hangover.
Actually, I had a headache, which is ironic, because my assignment was, "What to do if your teen has a migraine."
On top of all of this, I misunderstood the assignment. I covered all the information that the editor wanted but I didn't understand that the story was supposed to follow an exact format, which you can see from this example that the editor sent me. Instead, I wrote it as I would have written it for the paper, as a personal story-driven narrative. They want to do more personal story-driven narratives, but only if the assignment specifies that format. I stayed up late doing the wrong thing.
She was nice about it, though. She asked me for my bibliography, which I sent immediately, and said she would go over it on Monday and see what we could do about getting it in the format she wanted. This will be a good gig once I have figured out how to write each story according to prescribed formats. It's hard when you have been doing a certain kind of writing for 30 years. If I look at how much I made on the story, it was probably around a penny an hour.
Also, technical problems were making me pull my hair out and do a nervous habit that I have which is picking at the thingies on my hands. I was trying to hyperlink in Word to the websites that I was using. But it would not let me copy and paste. I did what Joe told me, looking up, I can't paste a live URL into my word docs and I tried the solutions...which didn't work. I sent her the text in an email so that I could put in the links.
I thought of making a Genius Bar appointment at the Apple Store but when I wrote in what the problem was, I saw that I can schedule a call. Last time I called, the phone genius solved a problem for me so that is on my list to do before tomorrow, unless George Delisle reads this and figures it out. I miss being at the paper and yelling, "GEORGE!" or walking out back and finding him and being so relieved when he solved my computer problems. I miss those days.
Sunday, February 14, 2016
I think I forgot to say...
 |
| Ben, birthday girl, and Joe |
But I gathered some thoughts and here I am now on a -11 degree morning happy to have Joe home for the weekend even though I didn't see him that much, liking the sight of his car in the driveway, and enjoying having had Chinese food with him last night while we sat in the den in our usual places
with Maddie's head on my lap, and then even braving the 1-degree night to drive down the road to the Dockside to hear the band Midlife Crisis.
I forgot to write about how sweet it is that my children get me an age-appropriate birthday candle, and how we had a nice festive party in Fairfield and how I loved holding Nell, who was wearing the cute Hannah Anderson dress that I got her for Hanukkah. And how my donor, Denise, sent me an email with seven exclamation points in the subject line.
Too bad I wasn't wearing them on my way home on Tuesday when my flight from Pittsburgh to Dulles left late, leaving me about 15 minutes to run through the airport from C terminal to the very end of the D terminal in my boots.
In other news, my trip to Boston the next day for ECP was pleasantly smooth. I finally got another company – Prevalent – and the polite driver arrived in my driveway ahead of time. I got a trial of Amazon Prime so I could watch Mozart in the Jungle, and the three hours with the needle in my arm passed quickly as I watched this beautiful series. The nurses seemed to enjoy the music too. When I got home that night I stayed up until 11:30 watching more episodes and went to bed with classical music in my head.
Friday, February 5, 2016
A day at the (Washington, D.C.) airport
I met a lot of interesting people yesterday:
These included:
An electricity consultant,
A biologist who works on scientific learning models for elementary schools,
A man, with his wife, who was trying to visit his 93-year-old mother,
A businessman who had just lost $4,000 in billing hours, and
A woman who was mad as hell.
We were stuck for almost seven hours in Dulles Airport in Washington, D.C., where United Airlines flight 3783 was scheduled to take us to Pittsburgh at 12:22 p.m.
I heard upon arriving at the gate at 11 a.m. that the flight was delayed due to mechanical problems on the plane coming from Norfolk. The plane had taken off but turned around. The estimated arrival time kept being pushed back by the hour. About 3:30, the flight was canceled.
We streamed over to customer relations. The next flight out, at 5:30 p.m., was full. We could get on the one after that, at 10:10 p.m., which sounded like a very bad idea, or get the shuttle to the other airport (Reagan) and get a 5:15 on American. Doris, the agent, was punching in the information that would get some of us onto that plane when our flight was reinstated after another plane came from somewhere to get us out of there.
We rushed back to the gate. Now, the plane needed a crew. A nice looking pilot stopped to talk to someone. One of my new friends said maybe he could take us. We talked about how much worse it was for the people who were stranded in airports overnight around Christmas. Still, that didn't make our own little purgatory any less annoying.
You might wonder what I was doing in that airport. I used to be able to take US Air directly from Bradley to Pittsburgh to visit my friend Emily, but after US Air merged with American and Pittsburgh lost its hub, you can't do that anymore. So I flew out of Bradley at 10:15, expecting to make the connection and get to Pittsburgh at 1:50 p.m. Washington seems out of the way, but actually, it is only a 45 minute flight.
There is a certain camaraderie in these situations – up to a point. I did a little chair yoga and some stretching, read my book and the newspaper, and talked to my new friends as we circled around the boarding area. One woman spread out her sweatshirt and fell asleep on the floor. Someone said they should give us a voucher for lunch, but this was not forthcoming.
Luckily I had decided in the morning that rather than spending $20 on bad airport food, I would make a sandwich and bring some snacks. That easy banana bread recipe that I have been making has been great; I make it with a little less sugar, throw it in the freezer, and it's ready to grab and go.
At 5:15, applause rang out when the announcement came that the plane was ready and had a fresh crew. Meanwhile, passengers for that 5:30 plane were arriving. More chaos ensued when we tired people from the earlier flight and the relaxed newcomers for the 5:30 were told to line up together and walk out the same door to the two planes awaiting us. Someone said, Make sure you get on the right plane! They didn't make it easy.
I walked down the passageway and went to the first door, marked flight 3783. A Delta rep shooed me and the others down to the next door.
Once on the plane, we got a laugh out of that.
They even had the signs were reversed.
The pilot apologized for the "wee delay."
I am always happy to see Emily, my friend since the 7th grade, but I was especially happy yesterday.
These included:
An electricity consultant,
A biologist who works on scientific learning models for elementary schools,
A man, with his wife, who was trying to visit his 93-year-old mother,
A businessman who had just lost $4,000 in billing hours, and
A woman who was mad as hell.
We were stuck for almost seven hours in Dulles Airport in Washington, D.C., where United Airlines flight 3783 was scheduled to take us to Pittsburgh at 12:22 p.m.
I heard upon arriving at the gate at 11 a.m. that the flight was delayed due to mechanical problems on the plane coming from Norfolk. The plane had taken off but turned around. The estimated arrival time kept being pushed back by the hour. About 3:30, the flight was canceled.
We streamed over to customer relations. The next flight out, at 5:30 p.m., was full. We could get on the one after that, at 10:10 p.m., which sounded like a very bad idea, or get the shuttle to the other airport (Reagan) and get a 5:15 on American. Doris, the agent, was punching in the information that would get some of us onto that plane when our flight was reinstated after another plane came from somewhere to get us out of there.
We rushed back to the gate. Now, the plane needed a crew. A nice looking pilot stopped to talk to someone. One of my new friends said maybe he could take us. We talked about how much worse it was for the people who were stranded in airports overnight around Christmas. Still, that didn't make our own little purgatory any less annoying.
You might wonder what I was doing in that airport. I used to be able to take US Air directly from Bradley to Pittsburgh to visit my friend Emily, but after US Air merged with American and Pittsburgh lost its hub, you can't do that anymore. So I flew out of Bradley at 10:15, expecting to make the connection and get to Pittsburgh at 1:50 p.m. Washington seems out of the way, but actually, it is only a 45 minute flight.
There is a certain camaraderie in these situations – up to a point. I did a little chair yoga and some stretching, read my book and the newspaper, and talked to my new friends as we circled around the boarding area. One woman spread out her sweatshirt and fell asleep on the floor. Someone said they should give us a voucher for lunch, but this was not forthcoming.
Luckily I had decided in the morning that rather than spending $20 on bad airport food, I would make a sandwich and bring some snacks. That easy banana bread recipe that I have been making has been great; I make it with a little less sugar, throw it in the freezer, and it's ready to grab and go.
At 5:15, applause rang out when the announcement came that the plane was ready and had a fresh crew. Meanwhile, passengers for that 5:30 plane were arriving. More chaos ensued when we tired people from the earlier flight and the relaxed newcomers for the 5:30 were told to line up together and walk out the same door to the two planes awaiting us. Someone said, Make sure you get on the right plane! They didn't make it easy.
I walked down the passageway and went to the first door, marked flight 3783. A Delta rep shooed me and the others down to the next door.
Once on the plane, we got a laugh out of that.
They even had the signs were reversed.
The pilot apologized for the "wee delay."
I am always happy to see Emily, my friend since the 7th grade, but I was especially happy yesterday.
Saturday, January 30, 2016
All of this really happened
When talking to Dana-Farber's assistant VP for Gift Planning Alice Zaff at the recent Chefs for Jimmy, I told her I would send her the link to what Dr. Alyea and Melissa wrote about me in the fall 2014 e-newsletter, Advances in Hematologic Malignancies.
I directed her to the second link down, Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML).
There, she would see my story, starting with my diagnosis in 2003 at age 48 after unusual fatigue during the Saint Patrick's Road Race.
I won't repeat the whole megillah; you can read it if you want by clicking on the second link. When I reread it, certain things jump out at me: the nearly four years in remission after my first transplant; the relapse in 2007 (not included in their telling was the fact that Korby and I had just won at the Districts); transplant #2 with an unrelated donor (allogenic transplant) ; and six months later, pancytopenia (empty bone marrow), followed by transplant #3.
Picking up from there, they wrote: "Six months after her second allogeneic transplant, the patient's peripheral blood counts again declined. A repeat bone marrow biopsy demonstrated second relapse of AML. She was readmitted to Brigham and Women's Hospital with fever and neutropenia in December 2008, and did not re-emerge for four months. She underwent another induction chemotherapy with a high-dose cytarabine-based regimen and had multiple life-threatening infections, including pulmonary aspergillosis and cytomegalovirus (CMV) colitis with a related gastrointestinal bleed. Other complications included delirium and severe edema."
They didn't even get around to talking about the kidney failure and the coma.
It was during that stay that I received my fourth transplant, on Jan. 31, 2009, with a different unrelated donor (Denise).
Today when I looked at a bottle containing 300 vitamins at Costco, I said to my friend, "I don't know if I'll live that long." That kind of "joke" still comes out of me reflexively. After I hit the five-year mark, I was no more likely to die of leukemia than anyone in the general population, but once you are afraid for your life in the way that I was, it doesn't totally leave you.
God willing and the creeks don't rise, tomorrow I will go to Fairfield to celebrate my seventh birthday, or re-birthday, thanks to Denise and Dana-Farber.
I directed her to the second link down, Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML).
There, she would see my story, starting with my diagnosis in 2003 at age 48 after unusual fatigue during the Saint Patrick's Road Race.
I won't repeat the whole megillah; you can read it if you want by clicking on the second link. When I reread it, certain things jump out at me: the nearly four years in remission after my first transplant; the relapse in 2007 (not included in their telling was the fact that Korby and I had just won at the Districts); transplant #2 with an unrelated donor (allogenic transplant) ; and six months later, pancytopenia (empty bone marrow), followed by transplant #3.
Picking up from there, they wrote: "Six months after her second allogeneic transplant, the patient's peripheral blood counts again declined. A repeat bone marrow biopsy demonstrated second relapse of AML. She was readmitted to Brigham and Women's Hospital with fever and neutropenia in December 2008, and did not re-emerge for four months. She underwent another induction chemotherapy with a high-dose cytarabine-based regimen and had multiple life-threatening infections, including pulmonary aspergillosis and cytomegalovirus (CMV) colitis with a related gastrointestinal bleed. Other complications included delirium and severe edema."
They didn't even get around to talking about the kidney failure and the coma.
It was during that stay that I received my fourth transplant, on Jan. 31, 2009, with a different unrelated donor (Denise).
Today when I looked at a bottle containing 300 vitamins at Costco, I said to my friend, "I don't know if I'll live that long." That kind of "joke" still comes out of me reflexively. After I hit the five-year mark, I was no more likely to die of leukemia than anyone in the general population, but once you are afraid for your life in the way that I was, it doesn't totally leave you.
God willing and the creeks don't rise, tomorrow I will go to Fairfield to celebrate my seventh birthday, or re-birthday, thanks to Denise and Dana-Farber.
Friday, January 29, 2016
A moment of panic, then, just more of the same
What would you think if you looked up the results of a biopsy of a spot on your face and you saw the word "invasion"? Even if it said "superficial blunt-type invasion," wouldn't you be worried? Especially if you had a friend who died after a squamous cell cancer on her tongue spread to the rest of her body?
I was definitely worried when I went to PatientGateway to see why I got an email saying I had a message and then looked up the results from my two biopsies of a couple of weeks ago. Dr. Lin said she would call me with the results; when I didn't hear I figured no news was good news, but then a friend said I should really call, so I was about to but then I saw the test results. It was the first time in all these years that I slipped through the cracks.
Here is what I read:
PATHOLOGIC DIAGNOSIS:
I was definitely worried when I went to PatientGateway to see why I got an email saying I had a message and then looked up the results from my two biopsies of a couple of weeks ago. Dr. Lin said she would call me with the results; when I didn't hear I figured no news was good news, but then a friend said I should really call, so I was about to but then I saw the test results. It was the first time in all these years that I slipped through the cracks.
Here is what I read:
PATHOLOGIC DIAGNOSIS:
A. SKIN, NASAL DORSUM, PUNCH:
Part of an actinic keratosis, focally at least bordering on squamous cell
carcinoma in situ.
B. SKIN, RIGHT JAWLINE, PUNCH:
Part of a SQUAMOUS CELL CARCINOMA, at least in situ.
It is difficult to exclude very superficial blunt-type invasion.
It was early in the morning. Luckily I had the doctor's home address, so I emailed her at home and at work to see what this meant. The words "very superficial" sounded OK, but not coupled with "invasion."
She responded right away, saying she was so sorry she hadn't called and that although those words that I mentioned sounded scary, it isn't that bad but it will need Mohs.
"The nose is ok. Blunt-type invasion sounds like a scary word, but blunt-type is the least worrisome type of invasion. All in all, it’s a pretty low risk lesion, but to be safe, I will be sending you to Mohs."
Mohs is the surgical removal of skin cancers. I have had it before in many places. This one will be on my cheek. The bright side: It is not the one on the top of my nose. It is a better place than two of my others: One on the top of my lip and the other practically on top of my tear duct, which left a hole necessitating a visit to a plastic surgeon who took a piece from my eyelid to cover the hole. She said I was getting an eye lift. I asked if she could even me out by doing the other side (joke) and she said no. I had one on my neck and one on my wrist, also.
I need to make an appointment for a consult with a Mohs surgeon in Boston.
Another fun thing: In a couple of months I am going to return for another session of the face fry that burns off the top layer of skin and with it the spots that can turn into cancer or that might be early cancer. I have some on my neck, also, so PDT, or photodynamic therapy, will extend onto my neck. This treatment uses photosynthesizing agents along with light to kill cancer cells. It burns worse than a terrible sunburn. Holding a little fan in your hand and waving it around helps, somewhat.
So the year that came off my life when I saw the word "invasive" will be returned to me when I get my new skin.
Tuesday, January 26, 2016
Countdown to my seventh birthday
Five days to my seventh birthday.
The other night I dreamt I was climbing up a steep set of stairs. I was wearing a pair of old flip-flops that were falling apart. The left one especially was in bad shape, and it kept catching on the stair. Also I was having trouble lifting that leg up to climb to the next step. I wasn't sure I would make it.
But then, all of a sudden I was on the top landing. I realized I just had to put on sneakers and I would be fine.
Dream analysis 101: It is hard getting to be where I need to be, and I am worried that something will trip me up, but I realize that I can do it...especially if I have the right kind of sneakers, which is a big theme for me because I'm always trying to find the right kind to keep my toe from hurting and my plantar fasciitis from flaring up.
So maybe all I need to do to make it to Sunday is to wear the right shoes.
But first, I have to get through tomorrow.
I told the supervisor at that horrible Westfield Transport to never ask for me again after the fiasco of two weeks ago. He said OK, but when I got the automated call stating the service that is picking me up tomorrow, it is the same company. Nothing I can do about it now.
I have a double header tomorrow. Dr. Goguen in head and neck oncology at Dana-Farber at 1:30, followed by ECP at 3.
Since Dr. Goguen is only checking my tongue every year now, I asked Dr. Alyea if he and Melissa could just do it. He said no, because she can see things they can't see. So I made the appointment. Then she canceled and rescheduled. And canceled again. I told her nurse that my doctor really thought I should see her, but she said Dr. Goguen had too many things going on to schedule routine appointments. It was a little dissonant to be told by my doctor that I needed to see her and then be told by her office that she couldn't fit me in. I can't remember exactly when the original appointment was, but I think around six months ago.
This was the surgery in which she removed precancerous cells from the left side of my tongue. I'm not really worried because Melissa, Dr. Alyea and my dentist said it looks fine, but still, I would like to hear it from her.
I'm going to have to stop using my left arm at ECP. I like to have my right hand free if I'm using the computer or trying to read a book, but, judging from the trouble I have had with the vein in the left arm the last two sessions, it must have developed scar tissue. It wasn't so bad after my nurse the last time gave me five milligrams of Ativan and five of oxycodone, but I would rather not have the pain in the first place.
The other night I dreamt I was climbing up a steep set of stairs. I was wearing a pair of old flip-flops that were falling apart. The left one especially was in bad shape, and it kept catching on the stair. Also I was having trouble lifting that leg up to climb to the next step. I wasn't sure I would make it.
But then, all of a sudden I was on the top landing. I realized I just had to put on sneakers and I would be fine.
Dream analysis 101: It is hard getting to be where I need to be, and I am worried that something will trip me up, but I realize that I can do it...especially if I have the right kind of sneakers, which is a big theme for me because I'm always trying to find the right kind to keep my toe from hurting and my plantar fasciitis from flaring up.
So maybe all I need to do to make it to Sunday is to wear the right shoes.
But first, I have to get through tomorrow.
I told the supervisor at that horrible Westfield Transport to never ask for me again after the fiasco of two weeks ago. He said OK, but when I got the automated call stating the service that is picking me up tomorrow, it is the same company. Nothing I can do about it now.
I have a double header tomorrow. Dr. Goguen in head and neck oncology at Dana-Farber at 1:30, followed by ECP at 3.
Since Dr. Goguen is only checking my tongue every year now, I asked Dr. Alyea if he and Melissa could just do it. He said no, because she can see things they can't see. So I made the appointment. Then she canceled and rescheduled. And canceled again. I told her nurse that my doctor really thought I should see her, but she said Dr. Goguen had too many things going on to schedule routine appointments. It was a little dissonant to be told by my doctor that I needed to see her and then be told by her office that she couldn't fit me in. I can't remember exactly when the original appointment was, but I think around six months ago.
This was the surgery in which she removed precancerous cells from the left side of my tongue. I'm not really worried because Melissa, Dr. Alyea and my dentist said it looks fine, but still, I would like to hear it from her.
I'm going to have to stop using my left arm at ECP. I like to have my right hand free if I'm using the computer or trying to read a book, but, judging from the trouble I have had with the vein in the left arm the last two sessions, it must have developed scar tissue. It wasn't so bad after my nurse the last time gave me five milligrams of Ativan and five of oxycodone, but I would rather not have the pain in the first place.
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