More drama on the dental front

Another great Health Union illustration

Of all my posts that Health Union has shared on its Bloodcancer.com facebook page, so far the one on Chemo and Teeth, Not a Pretty Picture, Part 1, has garnered the most reaction. (I had to write it in two parts because there was so much to say.)

Readers said they could relate to losing teeth and spending money. Clearly I am not alone.

I started out by expressing my dread when a tooth chipped not long ago. I wrote,

I don’t have much dental real estate to spare. I have lost 12 teeth, one by one or two at a time. It’s possible that my dentist might be able to repair the tooth. But the teeth I lost were so fragile they could not be repaired when they became decayed and either cracked, chipped or even crumbled. When I felt that I was chewing on something that should not be there, and when I spit the tiny piece of tooth into my hand, I thought, “Oh no, not again.”

I ended up losing the tooth and needing another bridge.

I don't have dental insurance. The plan available to me was terrible. In general, dental insurance stinks.

I explained, "Chemotherapy causes dry mouth, which is bad for dental health since saliva helps prevent tooth decay."

Also, a compromised immune system during chemotherapy opens the door for bacteria to have a field day on your teeth.

After I wrote the above part of this post, I was eating a salad and felt something sharp in my mouth. I spit the jagged piece out. It looked like a piece of a tooth. But I couldn't figure out where it came from. I went to look in the mirror. It looked like I had a piece of food lodged between my two front teeth. I looked closer. What I thought was food was actually a HOLE where part of my tooth had been. I'm afraid I'm going to lose the tooth. It is in the worst place.

This happened yesterday. I got a dentist for two days later. Today I called to see if they had a cancellation. I had a toothache. They couldn't fit me in. I'm going tomorrow.

Did I attract some malevolent toothy force by writing about my teeth???


Today I forgot my troubles during some good doubles at the Bay Road Tennis Club.

Somehow or other, though, I whacked my left arm with my racquet.  Must have been a misguided follow through.

A big purple bruise appeared almost immediately. Either I'm very strong or I have very thin skin. At least my partner and I won 6-0. The other two wanted a (fun) grudge match. We ran out of time at 4-4. I didn't want to go out in the pouring rain, so I sat around for a while and watched a Pickleball game.

Whining, dining, and giving thanks

In the summer, my Labrador retriever, Maddie, came up to my room to sleep in the air conditioning, but now she likes to sleep on the couch. In the morning she comes upstairs to wake me up and lies down on her hand-me-down LL Bean bed. She does the perfect downward dog. I gave her one of the quilts that co-workers had signed for me. It was after my relapse and was a smaller version of the large one that I took with me everywhere for a long time. She likes to rest her head on it.

I usually get down on the floor for a stretch and a hug and some mutually beneficial endorphins. She had a long puppyhood. I used to complain about her, but now I can't imagine life without her. She is almost twelve, and I can get all verklempt about her age, but I try to change the channel. On Thanksgiving, I told her I was thankful for her.

Having Joe and Katie home filled the house with warmth. It seems like only yesterday that they were fighting over the school bus. Specifically, over whether Katie could get downstairs fast enough for him to give her a ride, with Joe saying he was going to leave without her and me chiming in that she better hurry. (Actually, yelling up the stairs.) This probably did not help to de-escalate. If she missed the ride and the bus, I would have to drive her and wouldn't have enough time to run before work.

Now when I talk about running, I refer to my "so-called" run, because I'm so slow. Due to my neuropathy, I feel like I have lead boots on my feet. So when I went out for a Thanksgiving day jog of a little under three miles, I was glad that it was so cold – 15 degrees – that I couldn't feel my feet.

I tried some CBD oil but it hasn't worked well. A woman at the Brattleboro Farmers Market sold it to me. I ran into a "CBD Oil Users" group on Facebook, and when I put some photos up, they said it didn't have much CBD in it. Who knew?

 People have offered some good suggestions, such as how to buy samples from various manufacturers so you can see if it works before you buy more. There is another group, "Our Neuropathy Friends," consisting of people who are REALLY suffering and searching for relief.

That said, I'm not in shape, but I'm going to do the Hot Chocolate Run . It's for a good cause and crazy colorful and a lot of fun. 

After my little run on Thursday, I had just enough time to enjoy a breakfast that Joe made and then get ready to go to New Canaan for Thanksgiving. I got a kick out of telling people that I was going to Granny's. She's my daughter-in-law's grandmother, who graciously agreed to host us. 

Nell went around the table asking everyone what they were grateful for.

As soon as a person said they were grateful for her, she was on to the next person.

Maybe it was after my turn, but I think I got in that I was grateful for my family, and for being with extended family. The sun came out and I said I was thankful for that.  I would have said that I'm thankful for my bone marrow donor but it seemed out of place.

I wrote her a Thanksgiving thank you when I got home. 

Without her, I wouldn't be able to kvetch that my feet are killing me and lament that I only ran about three miles. 

As I wrote in my last post, it's good to have some perspective and remember when I couldn't even get out of bed. 

Thanks to Facebook, a painful look back

PJ with her Bouviers de Flandres in 2012

Facebook thought I'd like to look back on a post from four years ago, Sort of oxycodone-free zone, in which I wrote about a break from the excruciating pain after another tooth extraction.

No, Facebook, I would not like to see this memory, but you were going to share it with me anyway. Another freelancer wrote a story about how harmful this imposition can be to those who suffer from PTSD: They can be confronted with a photo or another bad memory of someone who abused them. It could even be one of those "Celebrate xx years of friendship with so and so."

I don't know if I technically have PTSD, but I definitely have triggers.

I wrote this on Jan. 6, 2014:

I woke up yesterday with my usual toothless-ache and took 10 mgs. of oxycodone, followed by another dose about five hours later.

Then I went out for coffee with a friend, and a strange thing happened. It didn't hurt again for the rest of the day. I thought that maybe coffee, conversation and a raspberry-oatmeal muffin at Rao's in Amherst had cured me. I felt so good that I even went to the gym.

I went on to write that the pain returned that night but I was encouraged by the break and by the knowledge that good conversation and coffee could hold the pain at bay.

Having lost 12 teeth (gradually) after my fourth transplant nine years ago, and having cried through many toothaches from hell, my dental drama loops into a whole period of time that I would rather not relive.

The only thing to say about it is that when I read about how bad it was, I have a renewed appreciation for being pain-free.

Another upsetting aspect of the post is that it brings back memories of two friends who I lost.

One through the mysterious (to me) end of a friendship and the other through the mysterious ways of leukemia that have often made me wonder why I lived and why a friend with the same disease died.

The friend whose company was good medicine during that pain-filled period is a friend no longer. I don't know exactly why this happened. We were longtime friends with similar interests, often spending a good part of the day together without knowing where the time went. When I inquired about a year ago why the friend was acting distant, the response I got was that the friend didn't enjoy my company any more. We didn't have an argument or anything like that. It hurts to lose a good friend... and to not know why. With hindsight my blog post about a good time is not a good memory.

So, strike #2 for Facebook.

Strike #3 concerns the comments. Not the content but the fact that the friend who wrote a comment died from the same kind of leukemia as mine. (Acute myeloid leukemia.) We had so much in common that we called each other doppelgangers. She too had multiple transplants, had three children, and was a runner and a Dana-Farber patient.

Patricia, aka PJ, wrote, "Just a thought. Years ago, I had excruciating back pain that turned out to be a herniated disk. The pain, which lasted over a week, despite copious amounts of painkiller and a cortisone shot, went away after I went to the hospital, was admitted and put on a morphine drip. The next day, I was pain-free and released. I went to see a neurological surgeon who advised after looking at the MRI (even I could see the bulge) that I have surgery. He said sometimes pain lets up by itself due to positional shifts in the body but that it will come back. Is there a chance that some nerve in your jaw was disturbed by your tooth surgery? It sounds like nerve pain to me. Maybe it will just go away. Feel better soon."

We frequently commented on each other's blogs, sometimes with advice, other times to share a laugh or say we understood. We had met virtually when she found my blog and contacted me. Later we met in real life.

About six months after she wrote that comment, she was gone.

I went back and read the last entry on her blog, which is here.

Getting together with Old Repubs

The way it was

Tonight I joined about 25 Old Repubs at the Red Rose Pizzeria in Springfield for a festive evening of storytelling and reconnecting. Old Repubs is the name of the Facebook group of former employees of The Republican, a group also including some hardy current reporters and editors. One of my former colleagues calls us recovering reporters.

Newspaper people tell the best stories. We talked shop – covering what has become of the industry and what it once was – and we told jokes and talked about our lives and our families and the state of the news biz and other things. Many of us lingered long after the meal was done, wanting to stay longer. Many have been gone for a long time, but we didn't miss a beat. We talked about how we miss the camaraderie, which before things started to go downhill could not be beat. We had joked around a lot but worked hard, staying late if we had to make up the time.

I never went back after my relapse in 2007, but, having worked as a reporter at the Springfield paper for more than 25 years, I often still say "we" when referring to the paper.

That is not to say it was all rosy. I still have nightmares about work: I don't have a chair, the light is too dim to see, they want me to work but there are not enough computer terminals to go around, they want me to produce more stories on impossible deadlines. (There never were enough working chairs; someone from the night shift would often take a day shift person's chair when he or she had just gone to the bathroom, and I would often start my day hunting for my chair.)

Recently, I awoke from a nightmare in which it was the last day of work before the paper went out of business, and we were all crying and saying this could not possibly be so and we did not know how to do anything else. I told this to someone tonight and she said that given the rate at which people are taking buyouts, retiring, or being laid off, the dream might be prescient.

When we get together, we lament what has happened to the industry.

Still, sooner or later, someone will say, "We had a good run."

Comment wasn't stupid after all

Somebody made a comment to me recently that, both in tone and content, I interpreted as belonging to the category of Stupid Things People Say to People who Have Cancer, or, thankfully, in my case, people who had cancer, but in some sense everyone who has had it remains a patient for life.

You can tend to be hyper sensitive, not just after cancer but after many misfortunes. Given a certain state of mind, you can get reactive, if not in words, then in how your body springs into over-alertness. At other times something might just float on past you, depending on your day or your mood.

The comment was more subtle than when I looked like a cancer patient. For example, it was in another class from the doozie, "You look like a concentration camp survivor" when I was bald and emaciated.

After this perceived "stupid" comment I wrote it up, leaving out identifying factors. But something kept me from posting it. Later I talked on the phone to a friend who said not to do it, it will only spread bad vibes. At that point I didn't need to post it anyway, because writing it got it out of my system.

Then, by accident, I discovered that this person had a whole other back story, and that what she said had nothing to do with me and everything to do with something painful in her life. It appeared in a new light. I don't know if this makes sense without details, but that's as far as I can go.

I can only speak for myself, but I have a sense that in these days of almost instant communication, we are too quick to hit send (on an email or text) or to hit post (on a blog or on Facebook). I can think of a couple of instances where I hit "send" on an email and then wished I had followed the advice of a different wise friend who said that when you are angry or upset, don't hit send until the next day when you are sure that's what you wanted to say.

In some cases, you have to say what you need to say.

In other cases, letting it go is better than letting it out.

I'm glad that in this case I took a step back.

Reflections on a birthday and a baby visit

A funny thing happened to me yesterday when I went for the day-before-my-birthday lunch with Ben, Meghan and Nell in Fairfield: In this age of Facebook where I am as guilty as the next person of sometimes oversharing photos, I didn't take any at all.

I was actually in the moment. How crazy is that? Although it's good to have everything so easily documented on our iPhones and tablets, "the old days," when you had to actually reach for a real camera, had advantages.

I took the accompanying photo off Facebook, just so you can see. Next time I will have someone take a photo or two or three of me with her, just so everyone knows I was there.

But yesterday, I looked at Ben walking around with Nell so peacefully cradled in his arms and thought for a second, oh that would make a nice picture, but I didn't reach for my phone. I sat on the couch next to Meghan while Nell was on Meghan's lap and held out my pointer finger and my granddaughter wrapped her tiny fingers around it. I touched her perfect, soft skin, and watched Meghan do a funny thing – she heard that if you stick your tongue out the baby will do the same thing  – and it happened! Of course she also showed she has a good set of lungs by scrunching up her little face and screaming and bicycling her legs.

She has sweet bow-shaped lips and also, something interesting, a tiny chip on the top side of her ear just the same as Ben's. Meghan said she's going to look like Ben; she hopes Nell will have more hair, and I said don't worry because if she looks like Ben she will look like Katie (because Katie and Ben look alike) and she'll have beautiful, lush hair.

Ben, Meghan and Nell gave me a pretty black tennis skirt and two cans of balls. Joe stopped by to say hello and to give me an I.O.U. for a gift from the U.S. Open.

So, it's my birthday. Ben wrote on my card, happy sweet 61. It is sweet in so many ways. And also, time to think of how many birthdays I have had. Those 61 plus the others with the clock resetting with my four transplants. Let's just count the good one, Jan. 31, 2009, so either I am six years and eight months (yes, I still count them), or, as I said in a stage whisper if you can do that when typing, 61.

At 48 when all of this started, the future did not look so bright. And as I wrote after Nell's birth, I said many times, "I'm never going to see my grandchildren," especially on that dark night in December 2008 when I had relapsed again and thought I was at the end of the road.

What a long strange trip it's been. (Thank you Grateful Dead.)

Thank you Denise, Dana-Farber and everyone else.