Saturday, April 30, 2016

A death in the neighborhood

Jack Magri
This week many of us in South Hadley and environs mourned the loss of Jack Magri, who died on Monday after a long fight with brain cancer. The owner of Tailgate Picnic was the nicest guy, known for making fabulous holiday baskets, running a thriving business, and always smiling even when you could see he was coming back from another surgery. Did I say he was very handsome?

On occasion we shared notes about what we were going through, how we felt, and what we were doing to boost ourselves back up after we had lost weight during treatment. I brought him a protein shake that I had made. He gave me one at the deli. The whole family loves it there. It is our home-away-from-home.

The same week, Joe Biden went to the Vatican to talk about two of his passions: his Roman Catholic faith and curing cancer. His son, Beau Biden, died of brain cancer at age 47 just about a year ago.

Jack was only 57. Someone said at calling hours on Thursday that this has been going on for 13 years. I don't know if that is exactly the correct amount of time. But it correlates with my own time frame. I told Jane that I thought his was worse...getting your head cut into repeatedly and having your hopes raised and going back to work in the public eye and having everyone ask you how you are and then having it come back again. Jane reminded me that mine was pretty bad too. Well, not pretty bad. Very bad.

But I am here to write about it, and my biggest complaint at this point is that I am fighting the urge, not always successfully, to pull the peeling skin off of my face after the photodynamic therapy last week gave me a bad sunburn.

I spent a lot of time last weekend finishing a long piece that I wrote for Smith College's Insight publication. It is on the research of Patricia DiBartolo, a psychology professor who studies the downsides of perfectionism. In doing so, I made a mess of my kitchen table and environs. Today I am going to clean up. It might take most of the day because I still haven't put everything away from Passover. My garden (or so-called garden) is a mess also.

As a footnote, Jews don't do open caskets. I only saw my first one after I moved to New England. Obviously you honor the choice of the family by going to pay your respects, but if you haven't grown up with it, it is hard to get it out of your mind.

Saturday, April 23, 2016

Mistakes were made

I made a mistake by getting the photodymanic therapy Thursday so close to Passover and the seder I'm having today, but by the time I realized it and went to reschedule I discovered I would have to wait until fall. With precancerous spots in various areas of my face and neck and a recently removed squamous cell, I decided I better do it.

To do this procedure, the doctor applies a photosensitive chemical to your neck and face, and then you get wrapped in Saran wrap and a layer of foil and hang out for an hour. Then you get an intense blue light for 16 minutes. It feels like the worst sunburn you can imagine. The last few times I got one blower to hold in my hand. This time I got one for each hand. You wave them around while you are frying. The benefit is that you get a fresh layer of skin.

 It occurred to me that I could have brought headphones and listened to music but it was too late. So I just focused on my breathing. Some doctors came in to observe the procedure. Dr. Lin told them that I had a bone marrow transplant and that I play tennis. Tell them I had four, I said from under the machine. They were impressed. One asked who my favorite player was and I had to search my memory because I was distracted by the scorching light. I came up with Federer. The doctor said he likes Nadal, and I said I like him too, and then they disappeared and I was left on my own.

Afterwards, Dr. Lin asked me how it compared to the other times I had it. I said it was a little worse. She said that is because she added more of the chemical. Somewhere in the small print it says not to do it before a special occasion. My face is swollen, red, and painful as though I fell asleep in the sun. Yesterday I was achy as though I had the flu. A friend volunteered to finish my Passover shopping, but it isn't the kind of thing you can ask someone to do. I needed to pick my flowers and wine. So I went to Whole Foods, which was even more crowded than usual. I saw someone I knew and looked the other way.

It was pity party day, which comes with a layer of guilt because I know two people who are dying and one who just lost her husband. It is bad that I got what I got, but good that all these treatments exist. The stuff on my skin is partially my fault – due to the sun-worshipping, lifeguarding, and tennis – but it wouldn't be so bad if I wasn't on prednisone and hadn't had my immune system manipulated the way it has been.

To conclude on a better note, I had the best ride in on Wednesday for my ECP. My driver was a big black guy who had played football at Arizona State but had to take time off to come back to Springfield to take care of his parents. He is also a poet. When we started chatting I found out that I am not the only one who has had terrible rides. He said most of the passengers have experienced the same thing or worse.

He told me he had submitted a poem to the New York Times but got rejected. I suggested he go to the library or a bookstore and read poetry journals, then find a couple where he thinks his style would fit in, then read submission guidelines and send in some poems. From the back seat I looked up poetry journals and sent him a link to about 100 or so. We followed each other on Twitter, where I thanked him for the nice ride. He thanked me for the info. I said he could contact me if he needed any help writing his queries.

As previously said, I decided to pre-medicate before my ECP on Wednesday. When I got to my bed I saw that I had Frank, who is the most experienced at putting in the needle. I told him that if I had known it was him, I wouldn't have wasted the oxycodone. Also, he is so funny, making a pun a minute, that you are cracking up instead of crying. When I told him that I had taken the oxycodone, he asked if I was getting a buzz. I said yes. Then he went to YouTube on his phone and played Jefferson Airplane. It was a quiet day there, and a couple of the nurses started dancing. I'm afraid that due to the effects of the oxycodone I talked the ear off of the woman in the bed next to me. She also had a bone marrow transplant for AML. A couple of nurses sat and talked to me, and before I knew it, I was done. It's a good thing that I took it, though, because near the end my arm started to hurt.

Then I got a ride to Margaret and Nick's, where I had dinner and spent the night. The next day I got another ride to Brigham and Women's, where I got my face fried, and then another ride home. Almost immediately I turned around and went to get Maddie at Jim and Jane's. It was beef stew night, and they had a place set for me.

Wednesday, April 20, 2016

Bad day at the Big Y in South Hadley

Yesterday I brought my oxycodone prescription to the Big Y in South Hadley so I could take it with me to Boston for pre-medicating before my ECP. I do not want to haggle with anyone about the degree of my pain when they don't believe I know what I need.

 At the pharmacy they said to go shopping while it was getting filled. I wanted to get a head start on shopping for my seder because I will be out of commission with two days in Boston for alphabet soup. ECP (blood sucking) today and PDT (face frying to get rid of precancerous spots on face and neck) tomorrow.

 I looked in two places and discovered this Big Y has only have a fraction of the Passover food that you need. Since there are not that many Jews in South Hadley, we should have not that much food. I should have known better and gone to Stop and Shop.

When I went back to get the prescription, they said it would take a few more minutes for the pharmacist to check it. I balanced on my toes. The pharmacist came out and said that because of the state's new stricter rules on opiod prescribing, I needed to have a cancer diagnosis. It is part of federal and state efforts to limit the use of opiods for chronic pain. Because of the effect that Tylenol and NSAIDS on my system, my doctors prefer oxycodone for me in the case of severe pain. If I have a headache, I'm not going to pop an oxycodone. But if you saw how long my last prescription lasted, you would see that I use it sparingly. When she looked in the computer she couldn't even see the last time I had filled it. In any case...

If the scene at the pharmacy counter were a play by Harold Pinter, there would be a big pause. Well, there was a big pause. The pharmacist was apologetic. I said (duh) I've DO have a cancer diagnosis. I've been coming here for 13 years to get my cancer meds. My prescription came in on Dana-Farber CANCER Institute letterhead.

Under the new rules, it has to say what kind of cancer you had, or have. They went to call Melissa. Apparently I could get a smaller supply at that point or get the prescribed amount after she verified. I wanted the full amount so I went home. Then she called and said Melissa had verified I had AML. She said I could come back. By that point I was too tired. And also I wanted to watch the New York primary results come in. I'll have to go back today.

But first I'm going to play tennis and hopefully forget about it for an hour and a half on the courts.

Sunday, April 17, 2016

Deep delve into dark place from a Marathon day

Cancer memories are tied to events, and Marathon Monday is one of them for me. Here's something I wrote on my "Surviving Cancer" blog four days after the bombing three years ago tomorrow. I recalled a great day when I jumped in to help a friend finish the race and a dark day when I was having graft failure after my first allogenic transplant and my second bone marrow transplant all together. (My first was autologous, which did not involve donor cells.)

In grieving over the Boston Marathon bombing tragedy, I have been thinking about my own connection to the race.

I "ran" the marathon once, thrilled to be there on a bright, festive Patriot’s Day. The word "ran" is in quotes because I ran only four miles, although I did cross the finish line. No, I was not doing a Rosie Ruiz thing, sneaking in partway and pretending to have run the whole race. A friend who was actually running the marathon asked me to do what many runners asked their runner friends to do: jump in near the end and run with them for support.

Sharing her excitement, I dropped her off in Hopkinton, where the race starts, and then drove into Boston. She told me where to find her and at what time, and sure enough, along she came just when she said she would.

I jumped in, feeling a little conspicuous but game. I wanted to cheer her on, so I said things like, "You're doing great," "You're almost there," etc. I think I was annoying her. "I can't really talk now," she said. I realized she just wanted me to run, so I stopped talking. We crossed the finish line and someone put a Mylar sheath on top of me.

I tried to protest that I wasn't a runner, but the volunteer was on to the next person before I could get the words out. I was thrilled for my friend’s triumph and got caught up in the joy of the event.

A few years later on another Patriot’s Day, I went to Boston from my home in Western Massachusetts in a vastly different state of mind.

I wasn’t running anywhere this time. It was after my first leukemia relapse and second bone marrow transplant. I had a high fever and was feeling awful. A friend drove me to the clinic at the Dana-Farber Cancer Institute. My nurse practitioner told me that I needed to be admitted to the hospital.

I had nothing with me, so my valiant chauffeur went to my sister’s house in nearby Newton and picked up a few things to wear – comfortable yoga pants and T-shirts.

They put me in a hospital room where the window faced a brick wall. The darkness fit my mood. My doctor came in and said I hadn't relapsed again, but my bone marrow was almost empty. It was my introduction to "graft failure." The donor cells had moved out. They would have to address the cause of my fever first. Then I would have more chemotherapy and another bone marrow transplant.

Friday, April 15, 2016

Another night, another relapse nightmare

The thin psyche of a cancer survivor: You hear about someone who had the same disease as you who has relapsed and is now terminal. You go to bed and have a nightmare that it has happened to you.

Someone I knew through our cancer connection had AML and a bone marrow transplant and was 100 percent donor when his blood counts crashed. He was told his cancer was extremely aggressive and, with no further options, he had three months to a year to live. (I asked him on Facebook if he had gotten a second opinion at Dana-Farber because he was not treated at a major cancer hospital; I said I was also in a precarious situation and they came up with something for me. I haven't heard back.)

In the hope that his donor cells wake up, they have taken him off the immune suppressants that you take after transplant to keep your own system from fighting of the donor cells. People wrote that they were praying for him. I wrote that I was sorry to hear the hard news but hopefully his donor cells will wake up and then said you hear plenty of stories of people who were given a short time to live and had surpassed that by many years. (I remember walking around and around the nurses station and talking to my donor in fight song fashion: "Go donor, go donor, go donor, go.")

I had given him the transplant pep talk a while back at the request of a friend. We're Facebook friends, and this is how I knew what had happened.

Last night I dreamt that the exact same thing happened to me. Usually I remember vivid details from my dreams, but all I can remember is the shock of it coming back and having to go straight to the hospital.

I was relieved to wake up and hear Maddie softly snoring on her L.L. Bean pillow at the foot of my bed.

Another virtual friend who I met through our blogs wrote that his Non-Hodgkin's Lymphoma had returned an unusually long time after his bone marrow transplant and he was facing more chemo and another transplant. I wrote that I had had four, so he should keep his chin up. He has a good sense of humor and titled one of his posts, "I'm Not Dead Yet." Assuming he was referring to Monty Python, I shared the song of the same name from "Spamalot." His wife said she listened to it a few times and it made her laugh. It is nice to be useful.

Here is the cart scene from the Broadway production.

Monday, April 11, 2016

Not the usual kind of exercise

For two days when I didn't officially exercise, I did a lot of running around.

On Sunday I drove to Fairfield to see Ben, Joe and Nell (Meghan was out). We had a nice little visit where the grownups had bagels and Nell had a bottle and some baby food. Nell seemed to like playing with the string on my sweatshirt.

I took the train to Grand Central and got a new MetroCard because I couldn't find mine. I like to think that I am still a New Yorker and was proud of myself for knowing that I needed a card, unlike Bernie Sanders who thinks you still need tokens, and unlike Hillary Clinton who needed five swipes to get in while I only needed one. I was planning to take the shuttle all the way further east so I wouldn't have to walk the long crosstown blocks  from there (42nd and Lexington) to my Aunt Marge and Bill's (United Nations Plaza), 49th street east of First Avenue.

When I got in and looked at the signs I felt really stupid. The shuttle only runs between Grand Central and Times Square to the west. NOT IN THE OTHER DIRECTION. So not-a-New Yorker.

I had wasted that perfect swipe. I ended up back in the terminal and went out to the street and decided to walk.

I was pulling a suitcase so it wasn't that easy. I'm afraid I looked like an out-of-towner: pieces of the New York Times fluttering in the wind, dragging that suitcase, carrying my laptop and purse, struggling to open the door of a deli to buy flowers and cookies for Marge and Bill, hair flying around my face in the wind.

People stopped to get photographed at Trump World Tower (a residential building not to be confused with Trump Tower on Fifth Avenue). They were all laughing as they did it. I don't know what that meant. I know what I was thinking, as you can see from my thumbs down in the photo.

Up at Marge and Bill's, I showed them photos and videos of Nell and enjoyed the view. Afterwards, I took a cab up to 66th and Third Avenue to get a cappuccino at Starbucks because I thought it was too early to have dinner with my cousin Jeanne. It was the closest one between where I was and 72nd street, where Jeanne, Bruce and Amanda live. I then got a look at a bad side and a good side of New York.

While juggling all my stuff, I pulled open the door of Starbucks. From behind me, a woman going into the store pulled it out further. My hand got stuck in the door and my fingers bent backwards. I looked over my shoulder at the woman and she said, sounding annoyed, "I would have opened the door for you if I knew you had issues." I wasn't sure how to take that but I don't think she was being friendly.

I sat down on a stool at the window. I put my suitcase under the counter and my black Longchamp purse on a shelf that had bags of coffee on it, and then I read part of Sunday's Times. I walked up the six blocks to Jeanne's and went into the building. The doorman called up and as I was walking towards the elevator it suddenly occurred to me that I didn't have my purse.

Naturally, I panicked. I went back to the desk and tried to call Starbucks but got the wrong one. I figured it was best to just go back there. So I got a cab and when I asked the driver to take me there and wait for me and told him what had happened, he said he would take me for free.

If you have to leave your purse somewhere in New York, Starbucks is a good place to do it. It was waiting for me behind the counter. The cab driver, who was standing next to his taxi when I came out of Starbucks showing him my bag, had a big smile on his face. I gave him a $5 tip. At first he didn't seem to know what I was doing. But we both ended up happy.

Today I took a cab from Jeanne's to Grand Central after briefly considering taking a bus or subway but realizing it wasn't going to be easy with all my stuff. There was so much traffic that it was a very expensive cab ride for a short distance. It cost $13-something plus tip, and I thought I could have played tennis for that amount.

Once in Fairfield, I considered taking a cab to Ben and Meghan's to get my car because no one was available to pick me up. But I didn't want to spend any more on cabs, so I walked the approximately 3/4 of a mile. It's a good thing that, thinking I might have time for a run, I had put on my sneakers.

From there I drove home, stopping at Katz's deli in Woodbridge for a corned beef sandwich and a Coke to go. I felt nostalgic about all the times that I stopped there with the kids on our way to and from New York, when it used to be a much smaller place, but the challenge of eating that big sandwich in the car took my mind off it.

And to think that seven years ago, I couldn't even walk.

Thursday, April 7, 2016

When the needle hits a nerve

Yesterday started out on a good note with the tennis round robin but did not end up so well.

The ride in to Boston for photopheresis was fine. I had the Turkish owner of Sonic Velocity who dispatched loudly from his phone and watched the monitor in his car but I didn't care because he is polite (unlike Kenny) and efficient and gets me there on time.

It was downhill from there.

The needle started hurting almost from the beginning. I asked for a heat pad, which usually helps, but it didn't. I gave it a little time but at about the fourth cycle of pulling my blood out (there are six) I asked Ellen, the PA, if I could have an xycodone. She doesn't like to give it to me. I have been through this with her before and ended up in tears because I only ask for it when the pain is intense.  I try to explain that Melissa and Dr. Alyea prefer it for me, of course when used judiciously, as opposed to Tylenol (bad for my liver) and ibuprofin. I'm not sure exactly why they don't want me to take Advil and such but I just know that they don't.

Sometimes it doesn't hurt at all and I breeze right through it, watch a movie, talk to the nurses, read the paper, or fall asleep. Yesterday was not one of those good days.

Ellen said she would give me two extra strength Tylenol and come back in 20 minutes. In that period of time it started to hurt more. I said I needed something stronger and by this point I was writhing in pain and crying and thinking I might throw up. She said that there wasn't much time left (actually there was at least 45 minutes of hell) so it wouldn't make sense to give me the oxycodone because it wouldn't take effect until it was over.

 She agreed to give me some Ativan under my tongue to calm me down. Rosalie held my arm higher. It took the pressure off somewhat. They said it must have hit a nerve. I was never so relieved to have that needle out.

I fell asleep in the car and could barely keep my head up at home because they had given me a whole milligram of Ativan. This morning when I woke up and wrote Melissa I was crying.

Ellen is going to talk to her about going every three weeks instead of two because my veins might be getting tired. I said to please talk to Ellen and explain that I know what I'm doing when I ask for the stronger medicine. One of the nurses said to just bring my own and pop it without asking but another said that is going against protocol. I don't like to take it for no reason but I might just take it before the procedure next time to avoid the pain and suffering of yesterday.

Melissa said she was fine with either talking to Ellen or having me take my own prescription beforehand or during. I'm leaning towards just taking it before so I don't have to worry about it.

Friday, April 1, 2016

Hit hard by drug withdrawal symptoms

Didn't blog for a while because I was feeling in a funk and didn't want to whine.

Having been told not to exercise after the Mohs surgery, I started to feel like I was suffering from exercise withdrawal. Plus my routine was interrupted. I thought about the fine line between exercise as a good habit and as an addiction and thought I should be better at chilling than I am.

Dr. Berger took my stitches out Wednesday and said I could get back to exercising. So I called Enfield Tennis and said I would go to George's clinic yesterday at 1. I had done an interview at Smith College in the morning and when I got home realized I didn't have time to give Maddie a good walk. Jim and Jane have an open door policy and sometimes I just call on my way there because he is home 99 percent of the time.

I called right before I left and put the dog in the car even though he didn't answer because sometimes he's outside. Got there, and no Jim. Could have driven to Enfield and left Maddie in the car but that would have made me nervous, so I went back home. I took a little walk and was really dragging.

In the past couple of days I have been had some strange symptoms that made me think I was getting sick. Stomachache, headache, little sweaty, burning eyes, and some other weird things, plus, as I said, depressed.

I don't know how the idea came to me but it occurred to me I might be suffering from gabapentin (Neurontin) withdrawal. It is the pill that I take for neuropathy. I ran out a couple of days ago and uncharacteristically, because I am always good about getting me refills, forgot about it. My feet weren't bothering me so I thought maybe I don't need to take it after all. Last night my feet started tingling and maybe that was what made me look it up. Holy cow! The list was crazy. It can even give you suicidal thoughts. I didn't feel that bad but I was actually almost crying by the time I realized.

The Big Y pharmacy was closed, so I paged Dr. Alyea to get him to phone in a prescription to CVS. By that time it was about 10 p.m. When I got there, they said my insurance wouldn't cover it because I had had it refilled at Big Y (and hadn't picked it up). I was leaning on the counter. I forget the price to pay on my own but it was a lot. They sold me about half a dozen for $11-something. Took one last night and one this morning.

I'm not sure if I feel better yet but at least I diagnosed the problem.

I'm always so careful about keeping track of my prednisone and Valtrex. The moral of the story is that all of your meds are important and you shouldn't stop any of them without consulting your doctor. As you can see from the symptoms according to Mental Health Daily, it could have been worse.

  • Anxiety: Some individuals report feelings of anxiety upon withdrawal. This anxiety may be subtle or severe. It has been documented that some people actually take this medication for treating anxiety. Therefore when coming off of this medication, it is common for people to feel especially anxious.
  • Appetite changes: Some people may feel like not eating and will experience a noticeable loss of appetite when quitting Gabapentin. Others may experience an increased appetite – especially if while on the drug their appetite decreased.
  • Crying spells: The emotions can run wild when coming off of this medication. You may find yourself crying for no reason or you may experience crying spells as a result of the depression you are experiencing. Just know that the excessive crying will eventually stop.
  • Depression: Many people experience feelings of significant depression when they stop taking this medication. Even for people with no prior emotional problems may experience severe depression when they stop taking this drug. There have been cases where individuals take this medication recreationally and experience very tough depression when they have to stop taking it.
  • Dizziness: One of the most common symptoms to experience during withdrawal from this medication is dizziness. You may feel so dizzy that you are unable to properly function throughout the day. Just know that this means your brain is trying to reset itself and it will eventually go away. If it doesn’t subside, you could try to taper even more slowly.
  • Fatigue: Another common withdrawal symptom that you may experience is that of fatigue, lethargy, or tiredness. You may lack energy to get things done throughout the day. It is common to feel extremely fatigued while coming off of Gabapentin – do your best to cope with it.
  • Headaches: Most people don’t talk about the fact that coming off of this medication can result in headaches.  There have been cases of individuals that go on this medication, and during withdrawal experience migraine headaches.  As time passes, these are thought to go away.
  • Insomnia: Some people experience pretty severe insomnia when they first quit this medication. This may have a profound impact on your sleep patterns, so do your best to cope with the inability to fall asleep. Try to engage in some relaxation exercises if you are too anxious or agitated to fall asleep.
  • Irritability: You may notice yourself becoming especially irritable during the acute phases of withdrawal from this drug.  It may be difficult to cope with, but take a step back and realize that your neurotransmitter levels and brain activity has been temporarily altered.  You may not be able to control feeling this way, but you can do your best to control how you react because of it.
  • Itching: You may experience itching all over your body. This isn’t a very well documented or talked about symptom, but some people may feel as if they are going crazy because their body feels so itchy during the withdrawal process. Just know that if you are experiencing extreme itchiness, you are not alone.
  • Muscle pain: If you were taking this medication to help manage symptoms of pain, it is no doubt that the pain is going to return. With that said, it is common to feel pain throughout the body and in various muscles when quitting this drug.
  • Nausea: Some people become very nauseated during their withdrawal. This is not an easy symptom to cope with, but do your best to fight through it.
  • Restlessness: It’s common to feel restless when coming off of Gabapentin. The restlessness may interfere with your ability to stay focused throughout the day on certain tasks. Take it for what it’s worth – try to push through it and know it will subside.
  • Seizures: One of the biggest dangers associated with cold turkey or sudden discontinuation of Gabapentin is that of seizures. There have even been reports of people experiencing seizures from relatively low doses. Make sure that you take the time to taper off of this drug – regardless of your dose.
  • Sleep disturbances: You may experience significant difficulties falling asleep, staying asleep, and getting a restful night’s sleep. These go hand-in-hand with insomnia, anxiety, and restlessness that you may be experiencing.
  • Spasms: Many people experience muscle spasms when trying to quit. If the spasms become unbearable, you may need to conduct a slower taper. In most cases people can deal with an occasional spasm or two.
  • Stomach pain: Some individuals have pain in their stomach and/or abdominal area during withdrawal.
  • Suicidal thinking: If you are withdrawing from Gabapentin and notice that you are becoming extremely depressed and/or experiencing suicidal thoughts, be sure to get help. These will eventually subside as time passes.
  • Sweating: Many people report horrible night sweats to the point that they wake up in the middle of their sleep with beads of sweat dripping off of their body. You may experience excessive sweating throughout the day, but it may be even worse at night.