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.

A little more dental drama

Well, folks, I might be getting near the point when I pop my teeth out before bed.

It wouldn't actually be teeth. It would be just one tooth, but it sounded more dramatic the first way.

I got worried on Friday when a piece of an upper tooth chipped off when I was eating a soft Cliff Bar. It wasn't even an almond or a Tootsie Roll, two of the previous culprits.

The major culprit of course is chemotherapy and how it suppresses the immune system. Chemotherapy causes dry mouth, which in addition to feeling bad, is also bad for dental health, since saliva helps prevent tooth decay. Chemotherapy also disrupts the balance between the beneficial and harmful bacteria in the mouth.

Without chemotherapy, of course, I wouldn't be here to write about this.

My teeth have been pretty calm lately. This after losing 12 teeth over the course of my treatment. Dr. Debian has been able to repair the remaining teeth that shed little pieces or pieces of fillings. He was on vacation this week. So yesterday I saw a different dentist at one of my homes away from home, Holyoke Dental Associates. (The other being Dana-Farber.)

After looking at the X-rays and checking the chipped tooth, Dr. Griffin looked at me solemnly.

He said the tooth was infected (in other words, a dental abscess) and in "normal" situations could be saved with a root canal and a crown. But he did not think there was enough left of the tooth for it to hold a crown.

He thinks it should probably be pulled. But he is deferring to Dr. Debian, who is returning next week. I have an appointment for Tuesday.

Say it is pulled. I then have two options.

I can go the route that I did when filling the gap on the upper left side: getting a permanent bridge (not paid for by insurance).

Or he said I could get a denture, which is covered.

I asked, "You mean the kind you pop out at night? "

"Yes, that's right," he said.

Not a good visual.

In the meantime, he gave me a "z-pack," or Azithromycin. The tooth hurt but started to feel better pretty quickly.

I won't be happy if I find out on Tuesday that I need tooth number 13 pulled.

But it could be worse.

Ten years ago this month things were not so good

At bottom right, 11 years volunteering

I might have burned myself out with my last post – I haven't felt like blogging.

But I figure that although no news is often said to be good news, people might think something terrible happened – which they correctly thought when I disappeared for a while after relapsing (two times) – or they will think I have nothing left to say and will stop checking in.

So herewith a post.

Things have been pretty calm, which is news in itself. Our summer tennis league started, and I'm enjoying playing outside with my Paper Dolls teammates. We have an especially fun time when we play with our sister team, the Valley Dolls and go out afterwards to Pizza D'Action in Holyoke.

I'm supposed to stay out of the sun but can't do it totally because summer means outdoor tennis.

I put on a lot of sunscreen and wear a sun protection shirt and gloves. The shirt by Coolibar is supposed to be breathable, but it is not, so if anyone knows of a more breathable brand, please let me know. By the end of one of our clinics at the Canoe Club, I felt like stripping down to my sports bra.

Lucky for my skin but bad for tennis, those Paper Dolls matches were in such bad weather that we played in light rain in the last one, and in the first one, we fought the wind. My father always said don't complain, it's an outside game.

For sun protection, I also bought driving gloves. They go up to my elbow and make me feel elegant. Unbeknownst to me until recently, the sun can damage your skin through your windows and windshield, making your left side especially vulnerable.

On my most trip to Dana-Farber for a checkup with Dr. Alyea, we went back and forth over whether I should increase my ECP to every week (to hopefully reduce the rippling on my thighs and abdomen) or whether I should stay at every other week and hope for more slow improvement.

We ended up at the same place as in every other consultation I've had in the past six months or so.

It's a lifestyle matter and basically up to me if I want to spend a whole day every week getting my blood sunburned. At least for the summer I'm going to stick with every other week.

To me the ripples look oceanic, but they're probably not as bad as I think. And the main issue, my flexibility and my hardening abdomen, is definitely better. So as my mother used to say to me when I looked at my face so close in the mirror that I saw all my flaws, I have to say to myself, "Stop looking so closely then! "

I feel good and am moving well, so I should just sit (or move) with that.

While in Boston I also attended Dana-Farber's Volunteer Appreciation Dinner and enjoyed it very much. Free food and recognition, yay. My contribution is through the One-to-One program, where people like me who have been "there" provide support to those going through it. At the dinner, I sat next to a woman who was in a similar program for breast cancer survivors, only theirs is in person.

She said that after she recovered from treatment, she ran a triathlon. And then another. And a third.

I told her that I had planned on doing one back in 2007 when I relapsed, but now I don't think I have it in me.

I also told her that I recalled my first words when Dan (Dr. DeAngelo) told me I had relapsed.

"But I was going to do a triathlon!"

He said, "We'll get you back on your feet."

I said to myself, "I AM on my feet."

When I told him I felt fine, he said that if not treated with chemotherapy and another transplant, I wouldn't feel fine for long.

That relapse was in July 2007, so it was brewing 10 years ago this month.

The same life but another life.

Lingering side effect from chemo a real pain

The acupuncturist said yesterday that it's good that the needles she put in the soles of my feet made me jump, because people with really bad neuropathy don't feel anything.

I'm not sure if that was encouraging or not because I'm upset that instead of getting better, the neuropathy in my feet has gotten worse.

She said it could be the heat, so I'm hoping that's all it is. Out of all the things that they can do for chemotherapy side effects, curing neuropathy is one of the most elusive. A doctor in the hospital told me to try cocoa butter. I don't think that helped. The drugs that sort of work are intended for other problems, such as the gabapentin (Neurontin), which is an anti-seizure medication originally intended to help manage epilepsy but which is also used for nerve pain and other problems.

Dana-Farber graphic

It is called CIPN, chemotherapy-induced peripheral neuropathy. Nerve damage to my feet. I don't think that in the past almost eight years they have ever felt totally normal. At best I have a little tingling. Sometimes people say I'm walking gingerly, and that must be the reason. I can think of at least one person who asked, "Why are you walking so funny?" and it was actually a doctor in my family who knows what I have been through. This I don't appreciate. I got nervous when I looked it up and saw that it can get so bad as to interfere with activity.

Interestingly, like a person who loses his or her (just can't say their, sorry, even though it's supposedly OK) stutter when singing, I don't have it that much when I run around.

I originally took three Neurontin a day but cut back to two when it seemed to get somewhat better. I have an email in to Melissa to see if she wants me to go back to three or try something else. One time I tried to go off in an effort to cut back on meds, and once it got out of my system I started waking up at night with sharp knife-like pain in the bottom of my feet. I went back on the drug. Another time when I ran out for a few days, I was late on picking up the refill because I thought that since my feet were OK it didn't matter that much.

I started to feel AWFUL. My stomach hurt, my head ached and I felt depressed. It occurred to me to look up gabapentin withdrawal symptoms and those and more were there, including even suicidal thought. I realized what a strong drug it is.

The list of integrative therapies is super long and kind of confusing.

I'm going to wait to hear back or maybe get some cocoa butter and try it again.

Off, off, damn spots

I have been telling people that I had a nose job as a way of explaining the bandaid across the bridge of my nose. It is near the spot where you usually got a pimple right before a date in high school. It is making me cross-eyed.

It is covering a spot I had biopsied at my visit to the dermatologist on Thursday. She also biopsied one on my cheek as a possible squamous cell cancer. I have had these before. It is par for the course. (Now that I write that, I am wondering what it really means, but it sounds fitting.) I hope I don't need a Mohs surgery on my nose. I'll find out this week.

A young resident actually did the biopsies while Dr. Lin supervised. I forget her name. Something with an R, so let's say Roberta. She called me ma'am. I said to please call me Ronni. She said, "You can call me Roberta." I'm not sure why this annoyed me, but maybe it's because she looked like she was about 10 years old.

She came in first to examine me and look at all the raised spots on my hands and also at some on my wrists and neck. I told her I was applying a cream called Carac once a day. I have so many creams, I forget what I am supposed to do with which one. When Dr. Lin came in and "Roberta" gave her summary, she said I told her I had applied the cream once. Jennifer – Dr. Lin – said that wasn't going to be very helpful. "I told her once A DAY," I said. Like I said, annoying.

Jennifer said I could hold her hand while the resident did the biopsies. I said I wished she could transplant her smooth hands onto me. Afterwards, she froze some of the spots. When they heal, I am going to apply a stronger chemotherapy ointment called Efudex to my hands and my wrists. It is going to turn them bright red but hopefully will help clean them up. This is important because the spots can be precancerous.

For the same reason, she scheduled me for another photodynamic therapy, or PDT, for my face. That is the procedure that basically fries the top layer of skin, which later peels as though you have had the worst sunburn. I said I wished she could do it on my hands. She said they could, but the ointment will work better.

Even though I am on a small amount of prednisone – 1 milligram a day – it seems to be the culprit. Melissa said my liver enzymes looked stable so when I go back to see Dr. Alyea in two months I will bring up the subject of stopping the prednisone. Again. Bringing it up doesn't mean getting off it. But we will see.

With all the serious side effects and other problems that people have, I feel silly stressing about my hands. Maybe it is because they are right in my view and it is hard to not look at them. They are the only sign that something has happened to me. The sun exposure from playing tennis doesn't help. I lather on sunscreen and even bought sun protection gloves but I probably didn't wear them enough.

Sometimes when I'm stressed (I'm sorry, this is gross), I don't even realize that I am picking at them. When Katie catches me doing it, she says, "MOM!" I have been told that people are not staring at my hands or even giving them a thought. I'm sure that is true. Trying to let it go. Maybe I'll start a new trend of going back in time and wearing ladylike white gloves...with my tennis skirt and sweatshirt.

Feeling a little better

I have had two almost pain-free days, which is unusual and very welcome.

Sometimes I get a twinge in my tooth, and I panic that the toothache is coming back. It reminds me of the panic I also get when I feel a dart of heel pain – the first sign of the dreaded plantar fasciitis. Fellow sufferers know how long it takes to make this debilitating condition go away. Anyway, I no longer need to take oxycodone for my tooth, although I have taken Tramadol, a pain reliever that is a step down.

My legs also feel better, though it's the same thing – they still hurt sometimes. Yesterday at physical therapy Michael worked me pretty hard rather than letting me lounge on a table receiving heat, ultrasound and massage. Following doctor's orders, I intend to play tennis Thursday.

Intend is in italics because it was one of our vocabulary words today in class at the Literacy Project the last day before vacation. I have enjoyed this volunteer job helping to teach reading and writing to adults. I should have headed straight home, but I liked being in Northampton in the snow. Instead I went to the Haymarket and had a scone and coffee while reading the newspaper.

For a change of topic, I'm linking to a recent post I wrote for Newsmax on the many different ways my hair has grown in after each round of chemotherapy. It's funny – most people recognize me although I look a little different, but others look right through me. (This usually happens at the supermarket. Maybe they would look through me anyway.) At a gathering of past and present newspaper people a couple of years ago, a former co-worker actually asked me who I was.

Well anyway, click here if you want to read about how I sometimes say that my darker hair is my consolation prize from having had cancer.

The "in between" cancer anniversaries

Cancer anniversaries – some call them cancerversaries – can be good, bad and in between.

Bad, of course, is date of diagnosis, and good is date of finishing treatment that recedes in time. I am four years, two months and one week out, but who's counting. God willing and the creeks don't rise, I will get to five years and call it a day.

This time of year being ten years after my diagnosis, I am thinking more about the in between than I usually do. I am in between two of those dates, April 4 and April 9.

These dates are not in my head. They're in the little blue book that Diane gave me 10 years ago to keep track of everything. Nowadays many people mark important dates in their phones or computers, but I like having this spiral notebook as a visual reminder of my cancer journey. It's coffee- and ink-stained, and during bad periods, my handwriting is almost illegible.

I wrote, "Last day of work: Friday, April 4."

And underneath that, "Admission, 4/9/03 (Wednesday)."

I can see both of those days clearly.

On Friday, thinking for some reason that I'd get something done, I went to work. I figured I would be treated locally at Baystate Medical Center. But the phone rang constantly. It was friends and family insisting that I go to Dana-Farber, one of the top cancer institutes in the country and about 90 miles from me in Boston. I finally gave in, and that Monday I left for Boston, saying goodbye to my children and my life as I knew it.

After my initial appointment with my new doctor, Daniel J. Angelo, Diane and I enjoyed a couple of days of retail therapy in Boston while waiting for a time to have surgery to implant the Hickman Catheter through which I would receive chemotherapy. We saw a movie, went to a jewelry store and picked up books and soft clothes to wear in the hospital – yoga pants and T-shirts so I wouldn't have to lie around in those awful hospital johnnies. That Wednesday, we went to Brigham and Women's Hospital loaded with stuff such as posters to put on the wall, videos, books, my quilt that I had brought from home and a lamp to serve as an alternative to harsh hospital lighting.

After the surgery, we set up the room, and it was finally time for Diane to leave. It was just me and my fears.

Then a bubbly nurse brought me Oreos. She chatted about this and that as she sat with me for a chemotherapy "push" going directly into my veins. The fear on that date was worse than the reality. Later, of course, as the chemotherapy did its work, I became extremely sick. But that night turned out to be OK.

Judy became one of my many nurse friends, and I still seek her out when I return to visit from time to time.

Good day sunshine

I love the moment when you first wake up, between dream and day, floating on a cloud. The room is cold and you're warm beneath the quilts, the sun seeping in from under the shades.

Even better, the dog has slept in and sticks her cold nose in your face AFTER 8 a.m. We get up and go downstairs. I love the way they look so funny scrambling down. The dog food has spilled, and I throw it out on the floor. She runs around and gobbles it up, eating in eight seconds instead of four. Very entertaining.

As opposed to yesterday, my feet have not woken me up. I guess that's the sunny way to look at the fact that my neuropathy – technically called chemotherapy induced peripheral neuropathy  – returned after I stopped taking Neurontin. I wanted to see if it had gone away, but alas, within about a week it was back. Yesterday I woke up to sharp pins piercing my feet.

I popped two pills and felt better pretty quickly.

I looked it up and found that the nerve pain is sometimes so severe that patients need to take a break during chemotherapy. The pain can last for days or months or even indefinitely. There isn't a proven treatment. Neurontin, which is used for nerve disorders, takes the edge off. One doctor at Dana-Farber said he thought cocoa butter helped. (It didn't.)

All drugs have side effects, of course, so I really wanted to stop the pills. I read that acupuncture and massage can help, so I might look into that.

Even with the drug, my feet are sometimes not all there.

Using the "N" card, (for neuropathy instead of the "C" card for cancer), could come in handy.

Can't do a yoga pose? I can't feel my feet! (Which is actually often the case, although I don't say it.)

Can't run for the tennis ball? My feet are numb!

I am trying to make a joke out of it, but it's not always that funny. Well at least for now, there is a solution, and I can proceed with my sunny day.

Counts are good

I read a very hopeful story yesterday about a young girl with leukemia, near death after chemotherapy had failed to keep her in remission, who received an experimental treatment that gave her a new chance at life.

Last April, when Emma Whitehead was six, doctors at Children's Hospital in Philadelphia gave her a disabled form of the virus that causes AIDS in an attempt to reprogram her immune system. The experiment worked, and seven months later she remains cancer free.

The New York Times ran a beautiful photo of Emma and her mother smiling together. It's always encouraging to read about promising new cancer treatments, and it caught my eye especially because it was about leukemia.

Coincidentally, I read the story while waiting to be called in for my two-month checkup at Dana-Farber. I had driven to Boston that morning through fog and pouring rain, fueled by glazed Munchkins and coffee.

My counts were good – about the same as last time – except that my platelets went down a little, to 86, out of a normal range of 155-410. But they have bounced around in the same vicinity for a long time, and my doctors remain unconcerned.

My hematocrit – 35.7 – was normal for the third time in a row, qualifying me for getting a pint of blood taken out to lower my ferritin. In an odd way, I was looking forward to it. Anything to take even a little less of the nauseating Exjade, which is the main way of lowering ferritin.

Melissa was about to schedule the "blood-letting" but then said I should wait until the next time because the procedure would make me a little anemic, which would not be good right before I go away.

I'm leaving on Sunday.

Yikes!

Holding pattern is over

I got my first dose of fludarabine, the pre-transplant chemotherapy, on Saturday. I’ll continue getting it once a day until Thursday, when I’ll get a double dose of melphalan, a chemotherapy agent aimed at mopping up what I like to keep reminding myself is a small amount of leukemia. I get my new cells on Friday. Thank you donor, wherever you are.

Dr. Alyea said to expect mouth sores a few days after the melphalan and also a possible thinning of my hair. I still have some fevers (and accompanying shakes) but mostly I feel OK.

It was strange to make the transition from holding pattern to actually taking action. I’ve been here so long (since Dec. 21) that towards the end of the hanging out phase that ended Saturday, I could sometimes distance myself from why I am really here. Once the chemo started, I came face to face again with the worry over whether it will work. The flip side, of course, is thinking that the start of chemo brings me closer to the day when I get the new cells and get better. I’m working on it.

There is no more Zen in my walks. Starting Saturday, I officially became a BMT (bone marrow transplant), with all the restrictions that entails. No more going out the double doors to rapidly walk 30 laps (a mile and a half) around the sixth floor. Whether counting the laps or trying to get in touch with healing energy (sorry if that sounds too new-agey) or just quieting my mind through breathing, I felt that the walks calmed me down. I know, I’m breathing all the time (thankfully) and can still connect with my breath, but it helps to keep moving.

Now (still wearing gloves and a heavy mask), I walk up and down the pod. I couldn’t even begin to count laps per mile, because it’s the shortest pod I’ve been on. Also it’s an obstacle course, with chairs, equipment, janitors’ carts and other hazards making it hard to find a clear path. It always seems to be busy out there, with doctors, nurses and aides going in and out of rooms or congregating to discuss a patient. Still I managed to walk twice today for about 25 minutes each time and even managed to find an area of about six steps to get a little speed up. And it’s all about getting around the obstacles, isn’t it.

Knowing that the dietary restrictions would set in again soon, I had so many big salads last week that a nurse asked me if that was all I ate.

I had company all weekend, which was great. I felt bad when I nodded off during conversation after they came all this way, but I'm sure they understood. Nancy drove from Syracuse; Emily flew from Pittsburgh, and Serena took the train from New York. (Pause here to get stuck twice for blood cultures. Ouch. Poor arms.) Diane also popped in, and Jim brought Katie today after school. Correction: Katie drove Jim. Yikes.

Last night I had an interesting dream. I was in a house where a big bear was rummaging around inside. I tried to run outside but I wasn’t fast enough, because the bear was drawing near. So I plastered myself against a wall and stayed very still. Next thing I knew, the bear had left the house and I was safe.

Oh by the way, for anyone following the MRI story, I got the results back and my brain seems to be OK!

It takes practice to turn off the worry switch

My worries took a hike when my hairdresser, Robin Thibault, trimmed my hair outside the salon recently.

Melissa called on Friday to say that the CMV test came back negative. Yay! That is now removed from my worry list. I will get my counts checked again on Tuesday to see if they’re coming back up.

I am definitely relieved, but once the worry switch goes on, it is often hard to turn it off. My counts should come back now that the CMV is gone, I’m tapering the Valcyte and giving myself Neupogen shots. Yet it is hard to totally shake the fear that they won’t come back and that I might be heading towards graft failure again.

There are things I can do. For the white blood count, I am giving myself the shots. I don't really know if my diet can have a big effect on my hematocrit, but I am eating more iron-rich foods just in case: Total for breakfast, some kind of red meat or chicken and leafy greens for dinner, and oranges to help the blood absorb iron.

As for the platelets, there is nothing to do, and that lack of control tends to lead to anxious checking. For example, when I give myself the shot, I check to see if there is more than a tiny dot of blood, because a drip might signal even lower platelets. So far, so good.  My nose was running on and off today, and I quickly dabbed to see if I had a nosebleed, a symptom dating back to the bad old days in May when my platelets were about 4 and my nose bled frequently. No nose bleed. And, no new bruises.

The best thing to do, of course, is to change my focus, which, on and off, I did pretty well during this beautiful weekend.

It takes practice, though, and I am going to practice by ending this post on a totally different topic, one that is never far from my thoughts: hair.

It’s a topic that resonates for most women, and I assume some men, after chemotherapy. I don’t really know how men feel about it, but I have to imagine it’s easier, because a bald guy can just look like a guy who happens to be bald, but a bald woman looks like someone who’s had chemo.

When my hair started growing after my first treatment in 2003, I frequently poked my head into the hair salon and asked my lovely stylist, Robin Thibault, “Is it time?” Finally it was time for her to trim an unruly few hairs. There wasn’t much to do, however. I had curly hair as a child, but when I grew up, my hair was wavy. After treatment, I had crazy curls and cowlicks. I tamed it with hair wax, and later with gel, and finally it got back to normal.

This time it grew back in curly too. Many people told me it looked great really short, and for a while I thought of keeping it that way. I even wrote a blog post about the significance of my decision. But over time I changed my mind. I want my long hair back because it makes me feel more like me.

The longer it gets, the more help it needs, especially on a humid day. On many days, I use clips to hold down my “wings.” I’ve used headbands (kind of silly looking) and baseball caps (which give me hat head). The day Katryn took my picture on the beach, the wind was blowing it all over the place – mostly straight up, making me feel like Marge Simpson. (The height, not the color.) It settled down after I put my sunglasses on my head.

You can’t just let it grow without getting it trimmed. Recently Robin pulled a chair out in front of the salon so that I wouldn’t have to be inside wearing a mask. She shaped it just the tiniest bit. I’m not sure anyone but me could really see the difference, but the haircut made me feel part of the normal world, and it took my mind off my worries.