Hanging in there...by a thread

Road all to myself on cloudy day run

When I got worried during cancer treatment @danafarber, my nurse, Vytas, wld call me a Nervous Nellie & say "They'll figure it out." Believing him, I relaxed a little. Without the same confidence in our great leader, there is no such balm w/ #coronavirus.

I'm not a big tweeter but I did want to share this thought. I remember Vytas sitting on the edge of my bed and saying "They'll figure it out." Vytas was a cancer survivor himself (lymphoma) and was one of us. He followed me wherever I went, starting from my diagnosis in 2003. I can't believe he has been gone for 10 years. He died not from lymphoma but from a heart problem resulting from the radiation he received. In looking him up to spark my memory about the year of his death, I came upon something I wrote. It was on Brigham and Women's Hospital's newsletter for nurses. The remembrance said,

A Newton resident, Mr. Durickas dedicated himself to patients, even when he struggled with his own health issues. His caring personality often made an impact on patients. One of those former patients is Ronni Gordon, a writer who blogs about running and battling with leukemia. She recently wrote of her memories of Mr. Durickas.

“Over many years and through four bone marrow transplants, he always took that extra step. His kindness and sense of humor helped me get through many tough spots,” she wrote. “I’d panic over some new detour on the road to recovery, and he’d calm me down with a mix of knowledge, a talent for putting things in perspective, and, always, something funny.”

The nation needs a Vytas, and we don't have one. Couldn't we even have someone with at least a voice that isn't grating, someone with a calm tone, such as I heard in the message that my Congressman, Richie Neal, left on my answering machine in giving a heads-up to an upcoming informational call that he would be giving? This article in The Atlantic, "No Empathy, Only Anger," , lays out the tone and substance of the administration's failure. The news is so all around bad, from two Republican senators dumping their stocks before the economy went bad, to mismanagement and missed opportunities, that following the news is sickening, but not following it is not in my nature. I am trying to limit as much as I can. For example, last night I didn't read or watch one bit of news, instead catching up on Grace and Frankie.

Is it lunch time?

Given absence of guidance from the top, states, localities, communities, and individuals and friends and family are trying to fill in the gap. Kudos to Serenity Yoga (and others) for setting up a virtual studio. I did my first class this morning via my laptop and enjoyed connecting with others and keeping up my practice. Afterwards, I had a FaceTime coffee chat with a fellow yogini. Last week four friends and I tried to share a virtual cocktail hour. There were some technical difficulties, but I guess we'll have to learn.

I've been to the supermarket twice and hope to not go again until this clears up. I wore a mask and gloves, but the mask kept slipping, and as I tried to fix it behind my ear, I thought about how I should not be touching my hair. My friend the pharmacist said he thought I was OK, but the concern afterwards really dragged me down. I'm either going to use online means or go to River Valley Coop, which has started curbside pickup. THEN you read about how you have to wipe your groceries down (which I didn't do) because who knows who has touched what.

Also why are people hoarding Hellman's mayonnaise?

My kitchen is ready to be painted, but I'm not sure if I should let the painter in. As of this writing I have said to put a pause on all of the house repairs. It's not finished but it's good enough. I do go back and forth on the kitchen. I would like to have the kitchen back...

It has been pointed out to me that being quarantined is nothing new to me; I learned how to live with limitations after each of my four stem cell transplants. But at least then I knew what the enemy was. In the case of the virus there is so much uncertainty.

There is still dog walking and following the dog around the house taking photos of her or getting a hug. On one of the nice days this week, I played singles with the BF. I evened out the playing field by making up rules as we went along, such as if he hit a serve that I couldn't return, I got a mulligan. (I gave him some second chances too!)

Absent tennis at the club, I am trying to do a little more running. The other day, I ran four (up and down hills) and walked two. It's not easy to get out the door like it was in the old days, but it's doable, and once I get going I'm grateful for it. I can almost forget what a mess we're in.

Wandering around Wellfleet, 'enjoying' a little fall

I was skeptical about riding the little Birdy folding bike,which looks like it is better suited to a circus than to a road. With its long neck, it brings to mind an ostrich. But riding it in Wellfleet, I was pleasantly surprised at the smooth ride and how much easier it was to go up a hill on it than it is on my regular bike.

Uncle Tim's Bridge

I haven’t ridden a bike since the fall, and I only went to spinning a couple of times, so I wasn't sure how I would do. Not that I wasn’t out of breath going up hills, but it was easier than I expected. I knew the center of gravity was different than on my bike so I didn’t want to let loose going down hills. Next time I’ll be a little less cautious so that I can get the benefit of that feeling of flying. But I didn’t want to fly over the handlebars.

We rode for about an hour. At the end when we got to the dirt road leading to the Airbnb, I figured I should get off and walk. But before I had a chance to do it, I got caught up in a vine reaching out from the bushes. I toppled backwards onto a cushion of vinca. The bike fell the other way. It was such a short distance, and the landing so soft, that I sat there and laughed. Later, I told Katie that the vine had grabbed me and pulled me in.

Birdy biker

With effort, I pulled the bike up and held onto it while I pulled myself up. There were just a few pinpricks of blood on my shin. I walked down to the car, where Jeff was putting the other bike away. He said when he looked back, I seemed to have disappeared! We agreed that it was a step up from last year, when my heavier bike fell on me and I needed 12 stitches. I’m making progress, from stitches to a dribble of blood. He said it would be nice to have a bike ride with no accident at all. I had been so careful during the riding part and had gone and had a mini-accident when I wasn’t even riding.

My first reaction was to want to call my friend Patricia, aka PJ. We always

Vine sticking out and site of topple

enjoyed comparing our falls. We made each other laugh. Mostly talking to myself, I said how how it was hard to understand what had happened. One day we were comparing notes about our similar lives, our diagnoses of acute myeloid leukemia, our multiple bone marrow transplants, and the next day she was dying.

I’m not sure when they stopped using bone marrow transplant and started saying stem cell transplant. They are the same thing. When I had mine, I was a “BMT” patient. It sounded like a subway line. Probably because in the older days, they got the stem cells directly from the bone marrow and now they get them peripherally, out of the blood stream.

On our first day in Wellfleet, when we went down to the beach, I did a walk/jog along the water and  pondered the difference between the way I see the world now as compared to the four times that I was a baby, after each stem cell transplant. 

The misty day lent itself to introspection. I went up ahead and wrote in the notes section of my phone. When I read it later I was going to edit it because it seemed a little overblown. But I let it be, because it captured a moment.

Trying to recapture the gift of reentering the world after stem cell transplant and seeing everything as though it’s new such as the water lapping at my feet as I walk along the Atlantic Ocean.

It’s like the joy of a child , for that is what I was. I can’t go back nor do I want to but I can try to stop the mental chatter that runs in circles around unanswerable questions or flits around the edges of the mundane. Should I work on my essay, should I write a blog post, should I answer emails, should I wear contacts to the wedding.... Switch.

Like you tell your doubles partner only you’re telling yourself. Paw prints and footsteps in the sand. Waves cresting. Waves crashing. Tide coming in. My beach speed is in between a jog and a walk. I could go a long ways but behind me I seem to have lost my friend in the fog. Sit down to wait. Don’t want to be like Scarlet shouting Ashley, Ashley, through the mist. Trying to think of words to describe the smell down at the beach. Something you wish you could bottle. Brackish.

We did one of my favorite walks, over Uncle Tim's Bridge and the "bench book" where visitors write how much they love the peaceful spot.

Yesterday when walking around Provincetown in intermittent rain, we stopped into the Provincetown Library to see what was with all the talk about the boat in the library. I didn't expect it to be such a big boat. The half-scale model of the schooner Rose Dorothea has a 66’6″ length and a 12’6″ beam and takes up a good part of the second floor. I almost forgot to mention one of the important things, which was getting a good, strong, cup of coffee after lunch, and taking it to the library.

A big re-birthday is around the corner. Kineahora.

I just completed a post for Health Union about the magical thinking, or superstition, that keeps me from saying that on Jan. 31, I will celebrate 10 years since my fourth bone marrow transplant.

Chances are good that I'll make it, but you never know, and I don't want to jinx myself.

It's all about the wording.

In the post, I explained that it might be OK to say it if I added the Yiddish phrase kineahora – “no evil eye” – to protect myself. (It’s pronounced KINE-AHORA.) It's even better if you spit three times, or in the interest of sanitation, make a spitting sound. It could be toi, toi, toi; pu pu pu; poo, poo, poo; or other variations.

So:

“I’m looking forward to an important cancer anniversary, kineahora poo poo poo.”

It also works well if you're complimenting a tennis partner.

"You had a good shot, kineahora."

The author of a post on the site The Word Mavens writes, "Jews are not the only ethnic/religious group to believe, at least a little bit, in superstitions. But maybe we put a greater stock in our superstitions because we’ve had such a tough time of it these past 5,000 years.

"If you slip up and brag – or if someone compliments you, what can you do? You can invoke the Yiddish phrase kineahora – 'don’t give me the evil eye.' As in 'I’ve felt good all summer, kineahora.' Or 'You look nice today, Sylvia. Is that a new dress?' 'Kineahora. I just got it. Do you like it?'

"The derivation of the phrase is from the German kein, meaning no, and the Hebrew ayin ha-rah, the evil eye. The kein and ayin are blended into one word: kein or kayn – keinahora."

I learned that you can go to the Evil Eye Store for protection. I saw some nice things, but I didn't buy them.

Murano evil eye pendant protection charm and multi-evil eye pendant

On another topic, in a previous post, I wrote about the solidarity and sorrow that comes from belonging to a community with people who have, or have had, similar illnesses. I had to break it into two parts because there is so much to say. The solidarity comes from meeting people who know what you're going through. The sadness is well known to readers of this blog. It's about losing friends like Patricia, Anne, Dori and Vytas.

The kineahora post took a ridiculously long time to write, while the solidarity and sorrow one was pretty free-flowing. Maybe it's because I needed to do some research for the former. Looking things up on the internet is easier than going to the City Library, which I did in the old days at the former Union-News, when doing research on microfiche would make me dizzy. Yet there is so much information on the internet that you can end up with information overload – also dizzying – and it can take twice as long.

Also there was something about the topic. The weightiness of it. At the paper we used to revel in writing the stories that came out with the ease of a hot knife cutting through butter. This was not that kind of story.

On yet another topic, here is a link to a podcast in which I share some of my story.

Fingernails, toenails, have stories to tell

This morning, when doing my nails, I thought about how my fingernails have stayed strong while the rest of me was falling apart. People have noticed. One of my healthcare providers pointed it out during cancer treatment.

I don't know why they're strong. I don't mess with them much...except when I occasionally go crazy and pull the skin off the side of a fingernail or tug on a dangling cuticle. As for the nails themselves, maybe, like a plant that is not overwatered, they are happy with benign neglect. I let them get a little too long, notice they don't look so great, cut off the tops, and file them into a curved shape.

When I did them, I had a flashback to when I was so weak that I couldn't do them. That was during my three and a half month residence in Brigham and Women's Hospital after my fourth bone marrow transplant. Diane did them for me. She knew that I liked them curved. She knew a lot of things.

Only occasionally do I get a manicure. The longer lasting gels don't seem to me to be good for your nails, plus you have to return to get the gel off, and the regular polish wears off so quickly.

When I go out to the garden with gloves on, I somehow end up with them off. The underside of my fingernails looks gross. The late Jean O'Connell, who when I knew her was the food writer at the Union-News, had a thing or two to say about dirty nails. They showed the type of person a person was. Also, their shoes.

I'll never be a hand model. I'm not happy about the way that little skin cancers and pre-cancers have messed my hands up. But my nails have not let me down.

Pedicures are welcome but not a regular indulgence. At one of our local places, they said that if you run around a lot, like I do, you should get them as part of good foot care. Maybe. Sometimes I do my own toes. I'm not bad at it. And I can even reach.  I do this more often than not, because of the money, or I keep the nail polish on so long that it is a half moon on the top of the nail.

But the whole pedicure experience is pretty relaxing. I'm half proud and half embarrassed about my partially blackened right big toenail. It definitely looks better when covered up. It got damaged during the 10-mile run I did in preparation for the Hartford half marathon. That was in October 2002, so, five months before my AML diagnosis.

Pulling the toenail off when it was loose enough, I felt like I was collecting my runner's badge of honor. (No, I didn't keep it.) A strip along the toe bed seems to be permanently damaged. As in, black. So if I'm going to wear sandals, I really need to cover that toe up. The rest look OK, but doing one would look silly.

It also is affected by the remnants of a toenail fungus. One time, a podiatrist gave me a medication for it. I had to have my liver checked. Looking back, I realized that probably wasn't a necessary drug to take.

At a recent pedicure, the woman cutting my toenails noticed from the shape that I had had ingrown toenails surgically removed. This was no fun, but it fixed the painful problem. They never grew back. She said I was lucky, because that's not always the case.

I liked the dark blue-gray color I got in Costa Rica. It stayed on for a long time.

When I was in Boston this week, Diane had the fun idea to get a pedicure together. I would have gotten the Costa Rica color, but the salon had a lighter version for spring. We both got the same color. Kind of when we used to wear the same outfits, only this time it was just our toenails dressed up.

The time I went way down & came back up

My home away from home for more than 3 months

Consider these blog entries, written by my sister when I was in the hospital after my fourth bone marrow transplant.

They are tucked into a March, 2009, post headlined I'm still here, in which I wrote, 

This is the first time I've been able to look at my computer for a month. Sorry I kind of disappeared; I was pretty much out of it although I'm starting to come back. I'm going to let Diane do the talking. She fished around and found some e-mail addresses where she sent updates. 

Diane said: Thank you for your calls to Ronni’s room and cell phone, and for the many emails you have sent to her recently. I have retrieved some of the messages and I wanted to send this message to let you know her status. At the moment, she is not answering either her cell phone or room phone, and is not able to check emails. She has suffered some complications due to various factors and is not alert to talk. However, since yesterday, there are some signs of improvement. The doctor told me this morning that ‘we are not out of the woods’ but there are some encouraging signs – better blood counts, stable heart rate and blood pressure, and some indications of better kidney functioning. The 3 kids and Jim were there today even though I know she didn’t want them to see her as she looks right now, but I felt it was important, as did they, for them to come.

2/15/09
Many of you have called or sent messages for information about Ronni so I am sending this as an update.

As I said before, she has had many complications, the most pressing of which is kidney failure that has led to a number of other problems including fluid build up in her lungs and as well, she is now in a form of a coma. Last night they moved her to the ICU where she is being closely monitored, awaiting a special bag of platelets (which were supposed to arrive yesterday at 4:30 but are being held up at the Red Cross and won’t get there until 4pm today.) At that time, they will begin dialysis with the hope that it will take off sufficient fluid to help regain consciousness.

On the positive note, her white count doubled since yesterday, which shows some signs of hope that the transplant is proceeding well. Her vital signs are stable. She is a real fighter. Her children saw her on Friday when she still had some level of consciousness, and she knew they were there for which I am very grateful.

2/18/09
Ronni was moved yesterday from the ICU back to the 6th floor – pod 6A and is in better condition. Her vital signs are stable, her white count and platelets are up, and the doctors are pleased with her progress overall. She has now had 2 rounds of dialysis and they see some improvement from this process, particularly in the fact that she is more alert. She opens her eyes occasionally and can follow some commands, but is still not talking and not fully conscious, yet it is progress.

On the other hand, she continues to have multiple complications – infections, fevers, problems with blood pressure, kidney failure, and GI bleeding… some of which is under control or being treated through dialysis or medications, and some that is being tested further.

2/23/09

The team of doctors are superb as are the nurses on her floor which are close to being in an ICU type setting. She does have periods of being alert and wants her phone, books, and computer back – all of which is a good sign but I’m sorry to say she is a long way from being able to access them. I don’t think she is in any pain, but is very weak and asleep most of the time.

We (Ben, Joe, Katie, Jim, and me) had a long meeting with the oncologist today. I wanted her children in particular to hear directly from the doctor what we are dealing with and what the treatment plans are. There are many elements that are being addressed individually and collectively. We are taking each day as it comes while being fully aware that things can turn for the worse at any moment. The kids will come back tomorrow for a visit as well.

3/2/09
Hi All,

After 3 very difficult weeks, Ronni is finally showing some signs of recovery. I don’t want to get too far ahead of myself here, but there are several good things, and yet of course a few challenging ones as well.

On the positive side, her white count has been stable and normal for a few days. She is engrafted, which means the transplant part of this ordeal has worked, for now. They have an interesting method of figuring out how much of her cells are from the donor and how much are her original ones – called a chimerism study (sp?). She is now 100% donor which is fabulous. I don’t think she ever got to 100% in the prior transplants. Other good news – after multiple studies of her gut and liver and other things, they have not found any new signs of problems.

There are some issues they are still following and treating, namely her kidneys are still not working. She continues to have dialysis every other day and that is definitely helping, but they are hoping after another 2-3 weeks, they will see signs of kidney recovery. Her heart rate has fluctuated as well, but it is being treated. And the damn CMV (a virus she has battled off and on for a while even before this transplant) is back, but also being treated.

All together though, she is making progress. Tonight for the first time in about 3 weeks she had something to eat – pureed fruit and yogurt – and not much of it, but nevertheless, it was food.

I wouldn't have delved back into past blog posts had not Joe sent a text marking the significance of the Feb. 22 date and his associations with it. It was the date that Diane called the family back to the hospital to say they weren't sure I would make it through the night. 

It's not like I can forget what happened, but nine years is enough time for me not to remember every significant date. It's interesting to be reminded and to compare and contrast.

This Feb. 22 was that crazy hot day. I played tennis, had coffee and a treat with Donna, then worked on some writing projects and walked the dog. I had dinner with Katie at Iya Sushi and Noodles , and then, because it felt like summer, topped the day off with an ice cream Sunday.

Back in the same time period nine years ago, I couldn't even turn myself over in the bed, let alone think of eating an ice cream sundae. 

Of bad dreams and an approaching birthday

I dreamt that I went to the eye doctor and found out my vision was bad. Not only that, the visit extended into a full check up in which something turned out to be very wrong. The doctor said I didn't look as good as I used to and asked if I was eating well. He said I should think consider changing my diet.

You can take this kind of dream literally, as in, I need to make an eye appointment and it is on my mind; or symbolically, as in, I am having trouble seeing some things in my life clearly, or, regarding the part about not being as well as I thought, anxiety about the approaching anniversary of my fourth bone marrow transplant, or my re-birthday.

I haven't had checkup anxiety for a long time, but my next appointment is on my mind because I have to keep moving it. First it was because of bad weather and now it is because next Wednesday I'm scheduled to sub in the Valley Opportunity Council's adult education program, which I have done the past two days.

On to another topic, I have made a mistake about my birthday.

That is, my re-birthday, the anniversary of my fourth transplant.

I have been saying that it was Jan. 31, 2009.  But on some paperwork that just came, it says Jan. 30th!

A day does not a big difference make, but still, it's important to know.

A birthday can be a time to pause and reflect. A transplant birthday is loaded.

Although I think I'm doing pretty well, on some level I'm concerned that a doctor will examine me and find something. Beneath the surface lurks the fear that since the same truck hit me four times, it can hit me again. Hence the nightmare.

You never know what will happen. We learned in the news biz not to say, "Such and such will happen on such and such a date." When you got a press release exclaiming, "The fourth annual most wonderful event in the world is happening over the weekend," you rewrote that "the fourth annual such and such is PLANNED." (And removed the hyperbole.)

So I'm hesitant to say that in a week I will be nine years old. Rather, in week I expect to be nine years old.

Though past the magic five-year cure marker, it's probably safe to join members of the general public who say that they will be a certain age and not that they expect to be that age.

So here goes...drumroll...on Jan. 30, I will be nine years old.

Spits three times. 

Toi toi toi!

Appreciating smell of freshly mown grass

Breathing in the smell of fresh-cut grass, which I did just now, makes me appreciate the smell that I had to avoid for so much time after transplant. I might have overdone it but when taking a walk I would keep a mask handy and put it on or even hold my breath when walking where someone was mowing.

I also took a wide berth around any construction sites or areas where dirt was turned up. Gardening was especially bad, and although nobody knows for sure where I got the aspergillosis that required lung surgery before my first transplant, it could have been from pulling a weed out of the garden without giving it much thought.

The Cleveland Clinic explains, Avoid gardening, mulching, raking, mowing, farming, or direct contact with soil and plants. Creating plant or soil aerosols increases exposure to potential pathogens (substances that can cause disease) including aspergillus and cryptococcus. This does not mean you should avoid the outdoors. Walking, biking, and many other outdoor activities are not only enjoyable, but will promote good health.

Some of the restrictions listed are for 30 days post transplant, but I remember this being a rule for much longer, especially on subsequent transplants

My doctor told me during my first rounds of chemotherapy in preparing for transplant, "If you get sick it will really set us back." Well, it did set us back, so I was super careful after that.

I'm not one of those people who says that cancer makes them appreciate every day so much more than before. IT IS NOT A GIFT. I'm still my same old self. But I'm grateful for the many times like this when I'm reminded of all the things I can do that I couldn't do before.

I wish I hadn't looked this up but I did and now I have to tell you that the smell is actually a distress signal that the grass sends out after being wounded.

Still, it is reminiscent of spring and summer and so we can embrace that part of it.

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.