Support groups for survivors of blood cancers are usually connected to major cancer centers which are not that easily accessible to people in places like Western Massachusetts, but Dr. Jay Burton of Springfield Medical Associates hopes to remedy that by starting a group in Agawam.
He spoke last night at St. John's Church Parish Center at a dinner sponsored by the Leukemia and Lymphoma Society. When I got the invitation via e-mail I didn't expect many people to be there. I was totally surprised to see a parking lot full of cars, and, inside, some 200 people, a combination of survivors, new patients, friends and family and other interested people.
I'm not sure if I would have joined a support group early on, but if I had wanted to, there wouldn't have been any available around here. There are breast cancer support groups and general cancer groups, but nothing specific to people fighting blood cancers. The only people who are on the same page as me when it comes to post-transplant issues are the friends I have met through the blogosphere, PJ and Anne. I know PJ in real life now too because we both went to Dana-Farber and both live in the Northeast, but it would be helpful to meet other people dealing with Graft vs. Host Disease.
I am blessed to have a large and wonderful support system, but really, how many people want to sit around and compare notes about lost teeth, tingling feet, messed up skin, side effects of prednisone, numbers of falls, etc.?
Chances are I'd be able to help some newbies out, also.
I'm looking forward to attending the first support group meeting, which is scheduled for April 24 at the church in Agawam.
Wednesday, March 5, 2014
Monday, March 3, 2014
Creating a happy and productive workplace
I am really glad that I don't do my writing in a place where I am tied to my desk.
My workplace is my home, where I am my own boss and have the flexibility to get the most out of myself with the proper "incentives."
This morning when I was writing my Newsmax post, my eyes could not focus. The continued dry heat in my house was getting to me. Another cup of coffee would not do it, but a quick trip to Tailgate Picnic would. I think I just needed some air. I got a raisin scone and told Anna at the cash register that I was betting that magic elements in the scone would help me write.
It worked. I breezed through the Newsmax post (with help from an extra cup of coffee) and finished editing a piece that I am doing for another client.
Back in my early days at The Republican, the atmosphere allowed for taking revitalizing breaks. When there was actually a downtown in Springfield, I might walk alone or with a co-worker down to the bookstore. Later there was only the Dunkin' Donuts next door, but even a coffee run could do the trick.
Increasingly, the atmosphere there became one of watching everything you do, with time spent recharging viewed as time wasted. I am sure this attitude permeates other workplaces as well.
In another life I am going to work at Google, where, according to the company' website, "Our offices and cafes are designed to encourage interactions between Googlers within and across teams, and to spark conversation about work as well as play."
Its goal in offices and campuses is “to create the happiest, most productive workplace in the world.”
I am doing my best to create my own happy workplace. I am going to walk the dog now and when I come back, I will write the other story on my budget today, a faculty profile for Holyoke Community College's next Career Focus issue.
And if I need another scone, I just might get it.
My workplace is my home, where I am my own boss and have the flexibility to get the most out of myself with the proper "incentives."
This morning when I was writing my Newsmax post, my eyes could not focus. The continued dry heat in my house was getting to me. Another cup of coffee would not do it, but a quick trip to Tailgate Picnic would. I think I just needed some air. I got a raisin scone and told Anna at the cash register that I was betting that magic elements in the scone would help me write.
It worked. I breezed through the Newsmax post (with help from an extra cup of coffee) and finished editing a piece that I am doing for another client.
Back in my early days at The Republican, the atmosphere allowed for taking revitalizing breaks. When there was actually a downtown in Springfield, I might walk alone or with a co-worker down to the bookstore. Later there was only the Dunkin' Donuts next door, but even a coffee run could do the trick.
Increasingly, the atmosphere there became one of watching everything you do, with time spent recharging viewed as time wasted. I am sure this attitude permeates other workplaces as well.
In another life I am going to work at Google, where, according to the company' website, "Our offices and cafes are designed to encourage interactions between Googlers within and across teams, and to spark conversation about work as well as play."
Its goal in offices and campuses is “to create the happiest, most productive workplace in the world.”
I am doing my best to create my own happy workplace. I am going to walk the dog now and when I come back, I will write the other story on my budget today, a faculty profile for Holyoke Community College's next Career Focus issue.
And if I need another scone, I just might get it.
Friday, February 28, 2014
Zapped
I was scheduled for two appointments in Boston yesterday, but one was canceled at the last minute, so I took advantage of my free time to have lunch with my friend Margaret and do some retail therapy with Diane.
It's too bad that the dentist canceled, because I was interested in hearing what he thought about a problem that I didn't even know had a name: burning tongue syndrome.
I did get to see my dermatologist for our now-routine session of zapping and chatting. It's a good thing I like her so much. She identified a spot on my wrist that will need to be removed surgically. She had thought that a past biopsy itself would take care of the little squamous cell, but it is still sticking around. She also biopsied a spot on my neck. Same old, same old. After Dr. Lin and the nurse had left the room, I noticed that my hair at the nape of my neck was caught under the bandaid. I went to find Bernarda, Dr. Lin's scheduler, who put on some gloves, and, tsk-tsking about the sloppy job, had to cut a little of my hair away.
By the time I was finished with lunch and shopping it was already getting dark. It might have been wise to spend the night, but I got it into my head to go home, so I stopped at Starbucks for a super-strong coffee on the way out. The barista told me that their Blonde Roast actually has more caffeine than the darker roast although it has a lighter taste. I got it with a shot of espresso; when he called out "One Red Eye," I didn't know what he meant, but he said that's it's name. (Two shots is apparently called a black eye.)
I had only eaten half of my lunch due to my normally slow eating habit combined with not having a full set of teeth. I realized I was hungry, so I bought a sandwich for the ride home. Add eating while driving to the list of driver distractions. I needed to go only one exit on 95 North to get to the Mass Pike, but by the time I realized what I was doing I had gone maybe five. So I turned around and of course immediately got stuck in traffic with those commuting home after a day at work along Route 128.
Despite strong winds and snow squalls, I arrived home safe and sound. I am glad I will not be driving much in the near future. I thought I might have trouble going to sleep after all that caffeine, but I drifted right off. However, I paid the price by waking up every hour.
It's too bad that the dentist canceled, because I was interested in hearing what he thought about a problem that I didn't even know had a name: burning tongue syndrome.
I did get to see my dermatologist for our now-routine session of zapping and chatting. It's a good thing I like her so much. She identified a spot on my wrist that will need to be removed surgically. She had thought that a past biopsy itself would take care of the little squamous cell, but it is still sticking around. She also biopsied a spot on my neck. Same old, same old. After Dr. Lin and the nurse had left the room, I noticed that my hair at the nape of my neck was caught under the bandaid. I went to find Bernarda, Dr. Lin's scheduler, who put on some gloves, and, tsk-tsking about the sloppy job, had to cut a little of my hair away.
By the time I was finished with lunch and shopping it was already getting dark. It might have been wise to spend the night, but I got it into my head to go home, so I stopped at Starbucks for a super-strong coffee on the way out. The barista told me that their Blonde Roast actually has more caffeine than the darker roast although it has a lighter taste. I got it with a shot of espresso; when he called out "One Red Eye," I didn't know what he meant, but he said that's it's name. (Two shots is apparently called a black eye.)
I had only eaten half of my lunch due to my normally slow eating habit combined with not having a full set of teeth. I realized I was hungry, so I bought a sandwich for the ride home. Add eating while driving to the list of driver distractions. I needed to go only one exit on 95 North to get to the Mass Pike, but by the time I realized what I was doing I had gone maybe five. So I turned around and of course immediately got stuck in traffic with those commuting home after a day at work along Route 128.
Despite strong winds and snow squalls, I arrived home safe and sound. I am glad I will not be driving much in the near future. I thought I might have trouble going to sleep after all that caffeine, but I drifted right off. However, I paid the price by waking up every hour.
Monday, February 24, 2014
Bloody day in Boston
Nothing can set your heart to racing quite like someone reading a blood test result and saying, "Oh no, that's not good."
This happened to me today when I got my finger pricked to measure my hemoglobin before getting a therapeutic phlebotomy. It needed to be 12 (which is normal). The reading said 10.4. I told the phlebotomist that it was strange, because last month it was normal range.
"A lot can happen in a month," she said.
I said this was making me nervous. She told me not to worry, she would get a nurse to try the test again, on the other hand. "We transplant patients are a nervous lot," I said, by way of explanation.
Five-year "cure" notwithstanding, it doesn't take much to shake your confidence.
When she left the room, I noticed drops of blood falling from my bandaged finger. Drip drip drip, onto the floor, onto her desk and onto my newspaper. Great, I thought, my platelets must be low too.
I went out to find the nurse, who came in, applied pressure to the bleeding finger and tried the other hand. She asked if I was wearing lotion, and when I said yes, she scrubbed extra hard because she said sometimes the residue throws off the test. This time it read 11.6, which was close enough.
So I got comfortable in the chair and turned my head when the phlebotomist put the large needle into a vein. I could feel pain from her pushing it around and knew from experience that this was not good. The needle had gone under the vein, not into it.
She asked if I had had enough, but I had come this far and I wasn't going to quit. I was happy that she asked another phlebotomist to try it because he got the needle in on his first try in the other arm. The rest of the procedure went smoothly, lasting only six minutes to fill a unit of blood.
I went from there to my appointment with Melissa, who was running two hours late due to rebooking of appointments that were canceled during the last two snowstorms. I rested my head against the wall and fell asleep.
The aide who finally took me in said I didn't look so good and offered to carry my bag. Poor Melissa was all flushed and looked even worse than I did. She said they had triple-booked her and she just couldn't keep up. I told her she could feel free to push me on through, but she just isn't like that and took her time with me like she usually does.
My counts were all fine. And I was glad to hear that my liver numbers had improved while on the lower dose of prednisone. Melissa said that maybe next time I could go down to 2 mgs. a day.
It ended up being a four-bandage day: One on each middle finger and one in the crook of each elbow.
By then it was almost 5 p.m. It might have made sense to spend the night. But I wanted to get home to go to my tutoring job tomorrow. Even though it's a volunteer job, I don't like to skip unless it is for something like when I was taking oxycodone for my toothache.
So I caffeinated and powered on through. On Thursday, I get to do the whole thing again, though thankfully just for the dermatologist and the dentist, who won't be taking any blood.
This happened to me today when I got my finger pricked to measure my hemoglobin before getting a therapeutic phlebotomy. It needed to be 12 (which is normal). The reading said 10.4. I told the phlebotomist that it was strange, because last month it was normal range.
"A lot can happen in a month," she said.
I said this was making me nervous. She told me not to worry, she would get a nurse to try the test again, on the other hand. "We transplant patients are a nervous lot," I said, by way of explanation.
Five-year "cure" notwithstanding, it doesn't take much to shake your confidence.
When she left the room, I noticed drops of blood falling from my bandaged finger. Drip drip drip, onto the floor, onto her desk and onto my newspaper. Great, I thought, my platelets must be low too.
I went out to find the nurse, who came in, applied pressure to the bleeding finger and tried the other hand. She asked if I was wearing lotion, and when I said yes, she scrubbed extra hard because she said sometimes the residue throws off the test. This time it read 11.6, which was close enough.
So I got comfortable in the chair and turned my head when the phlebotomist put the large needle into a vein. I could feel pain from her pushing it around and knew from experience that this was not good. The needle had gone under the vein, not into it.
She asked if I had had enough, but I had come this far and I wasn't going to quit. I was happy that she asked another phlebotomist to try it because he got the needle in on his first try in the other arm. The rest of the procedure went smoothly, lasting only six minutes to fill a unit of blood.
I went from there to my appointment with Melissa, who was running two hours late due to rebooking of appointments that were canceled during the last two snowstorms. I rested my head against the wall and fell asleep.
The aide who finally took me in said I didn't look so good and offered to carry my bag. Poor Melissa was all flushed and looked even worse than I did. She said they had triple-booked her and she just couldn't keep up. I told her she could feel free to push me on through, but she just isn't like that and took her time with me like she usually does.
My counts were all fine. And I was glad to hear that my liver numbers had improved while on the lower dose of prednisone. Melissa said that maybe next time I could go down to 2 mgs. a day.
It ended up being a four-bandage day: One on each middle finger and one in the crook of each elbow.
By then it was almost 5 p.m. It might have made sense to spend the night. But I wanted to get home to go to my tutoring job tomorrow. Even though it's a volunteer job, I don't like to skip unless it is for something like when I was taking oxycodone for my toothache.
So I caffeinated and powered on through. On Thursday, I get to do the whole thing again, though thankfully just for the dermatologist and the dentist, who won't be taking any blood.
Sunday, February 23, 2014
To New York and back
 |
| Amanda, Katie and me after seeing "Pippin" |
But the streets were still a mess from the latest storm, and it turns out I did enough running around to get all the exercise I needed and then some.
On Wednesday night we saw the amazing revival of "Pippin" on Broadway. Thursday we went to Brooklyn to have lunch with my niece, Lily. It was so nice out that we got ice cream and strolled back to Manhattan over the Brooklyn Bridge, with views of the Manhattan skyline and, to the left, the Statue of Liberty. During all those years growing up in New York I never took that walk. We provincial Manhattanites took notice of Brooklyn only from a distance. Now, of course, Brooklyn is a happening place.
Thursday night we had Chinese food with Marge (95) and Bill at their apartment near the United Nations, with spectacular views of the East River. Friday we went down to Times Square to our cousin Serena's office at Macys.com and did a little shopping in Macys. This all involved a lot of going up and down subway stairs, which wasn't too bad except for the last couple of steps on each trip, which required every ounce strength that I had left. With help from Katie's outstretched hand, I successfully navigated an obstacle course of puddles and ice patches.
Finally, on Saturday morning I had breakfast with our friend Harriet from Atlantic Beach.
 |
| Ben and Webster |
On Saturday, I stopped in Fairfield to see Ben and Meghan's puppy, Webster, who is part German shepherd and part Labrador retriever. I brought him Maddie's favorite snack, Snausages, and a little pull toy. What an adorable baby!
I was tired enough this morning that before writing this, I put my head down on the kitchen table and fell asleep.
Tonight, tennis, and tomorrow, the rescheduled trip for a checkup at Dana-Farber.
Tuesday, February 18, 2014
Travel time
It takes a ridiculous amount of time to juggle doctors' appointments, as anyone who sees a lot of specialists knows. Sometimes I think I should just move to Boston to eliminate all the time I spend on the Mass Pike…and on the phone trying to make it all work.
In rescheduling yet another appointment canceled due to snow, I couldn't get it back-to-back with two other appointments already scheduled. So I am going to see Melissa for my checkup on Monday Feb. 24, then go home and go back again to see the dermatologist, Dr. Lin, and the dentist, Dr. Treister, on that Thursday.
The good thing is that I can get my labs drawn when I do the therapeutic phlebotomy before my checkup. I will already have an IV in, so I won't have to be stuck twice to get my labs. We must be thankful for small gifts.
On a more fun note, Katie and I are going to New York tomorrow to see "Pippin" on Broadway and to visit friends and relatives. I will leave my car in Fairfield and take the train to New York, so on the way back I can see Webster, my grand puppy. Can't wait!
I have something to write today. It isn't so bad out, so Katie and I are going to walk Maddie. I already spent some time trying to chop ice on the front walkway so the mail can be delivered. I remembered buying "pet friendly" ice melt and actually found it in the garage and sprinkled some on the ice.
It is about 1 p.m., and if I start packing now, I should be done by midnight. My daughter, who is just the opposite, says I have BPD, or Bad Packing Disorder, and I'm afraid that she is right.
In rescheduling yet another appointment canceled due to snow, I couldn't get it back-to-back with two other appointments already scheduled. So I am going to see Melissa for my checkup on Monday Feb. 24, then go home and go back again to see the dermatologist, Dr. Lin, and the dentist, Dr. Treister, on that Thursday.
The good thing is that I can get my labs drawn when I do the therapeutic phlebotomy before my checkup. I will already have an IV in, so I won't have to be stuck twice to get my labs. We must be thankful for small gifts.
On a more fun note, Katie and I are going to New York tomorrow to see "Pippin" on Broadway and to visit friends and relatives. I will leave my car in Fairfield and take the train to New York, so on the way back I can see Webster, my grand puppy. Can't wait!
I have something to write today. It isn't so bad out, so Katie and I are going to walk Maddie. I already spent some time trying to chop ice on the front walkway so the mail can be delivered. I remembered buying "pet friendly" ice melt and actually found it in the garage and sprinkled some on the ice.
It is about 1 p.m., and if I start packing now, I should be done by midnight. My daughter, who is just the opposite, says I have BPD, or Bad Packing Disorder, and I'm afraid that she is right.
Monday, February 17, 2014
A different kind of exercise
I went jogging today.
Well, not real jogging. Water jogging, actually.
One reason I joined the Y was to use the pool, but I haven't gotten over there to swim yet. With Katie here, I had the motivation to go. First we had lunch in Northampton at Green Bean and then did some errands. Every time I go in that place I get blueberry pancakes, and today was no exception even though it was lunch. Katie ate something healthy, but the waiter told me not to worry, there were antioxidants in the blueberries.
We had packed our stuff and went straight to the Y. I haven't been swimming in ages, and it went OK. I was only able to do a couple of laps freestyle, but I mixed in breast stroke and using a floatie around my waist to jog in the water. I even was able to get out of the pool, which was probably the hardest thing I did.
Tomorrow is supposed to be the makeup Dana-Farber appointment for the one I missed due to last Thursday's snowstorm. With a 90 percent chance of snow, I doubt I'll get there tomorrow either.
Well, not real jogging. Water jogging, actually.
One reason I joined the Y was to use the pool, but I haven't gotten over there to swim yet. With Katie here, I had the motivation to go. First we had lunch in Northampton at Green Bean and then did some errands. Every time I go in that place I get blueberry pancakes, and today was no exception even though it was lunch. Katie ate something healthy, but the waiter told me not to worry, there were antioxidants in the blueberries.
We had packed our stuff and went straight to the Y. I haven't been swimming in ages, and it went OK. I was only able to do a couple of laps freestyle, but I mixed in breast stroke and using a floatie around my waist to jog in the water. I even was able to get out of the pool, which was probably the hardest thing I did.
Tomorrow is supposed to be the makeup Dana-Farber appointment for the one I missed due to last Thursday's snowstorm. With a 90 percent chance of snow, I doubt I'll get there tomorrow either.
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