Friday, November 29, 2013

Two holidays merge into one

Above, Joe, Ben, Katie and moi; below, Deborah and Charlotte
with the banner made by Meghan.
We had fun taking advantage of a once-in-a-lifetime opportunity to celebrate Thanksgivukkah, the convergence of Thanksgiving and Hanukkah.

Turkey with cranberry sauce, plus latkes with apple sauce, actually went together well along with the traditional fixin's. For dessert, we gobbled up (sorry!) pies made by Katie (pumpkin) and Evelyn (apple). Afterwards, we lit the menorah and I gave out presents; just some little things.

It definitely is nice to be done shopping before the Christmas rush begins.

I have been slivering the pies all night. I'm just sorry that I'm not running the Talking Turkey race tomorrow.

Wednesday, November 27, 2013

Last-minute menorah shopping garners results

It was a day before Hanukkah, and I was on my hands and knees, saying to myself, "If you were a menorah, where would you be?" This was a risky thing to do, given that I was unsure how I would get up, but I was determined to look in all of the usual places.

I found the candles and the blue and white napkins decorated with dreidels and stars, and even the Happy Hanukkah banner, which, courtesy of Meghan, will be replaced this year with a Happy Thanksgivukkuh banner. I also knew where to find our traditional Thanksgiving table decoration – the tiny turkey that Katie made many moons ago out of an upside-down clay pot, pipe cleaners and construction paper. But no menorah.

So with a day to go, I went hunting. My first stop, the Yiddish Book Center, turned up only children's menorahs. Since I was heading down to the Longmeadow area anyway, I went to the gift shop at Temple Beth El in Springfield. They didn't have the traditional one I wanted, but it was so last-minute that I almost bought a more modern menorah modeled after the one in front of the Knesset in Israel.

Across the street at Sinai Temple, I found a curiosity: a musical menorah that played "Rock of Ages." It reminded me of our family gatherings in New Jersey when we used to sing that song in unison. I was relieved when my eyes settled on one that was just right, nothing fancy and nothing funny.

I put it on the table and, miracle of miracles, the candles stayed in without wobbling. We lit the first one tonight.

My aches and pains are still unresolved, but at this moment I am putting them aside to say Happy Thanksgiving/Thanksgivukkah to all, and let us proceed to celebrate all of our blessings!

Sunday, November 24, 2013

Still in pain

Happiness is...Joe asleep on one side of the couch, Maddie on the floor, and me on the other side, dozing also, covered with a soft blanket, the pill that I finally took for the pain in my legs taking effect...and also, a football game on the TV,  just background noise because it's not my thing.

A nice family snapshot. I finally got up and opened the door for Maddie to go out, but the leaves were blowing like crazy in the wind, and she didn't want any of that, so she settled for her lunch and is now asleep again at my feet in the sunny dining room.

I thought I had turned the corner, but there are just little bursts of feeling better, and then I am in pain again. It's weird because I can do things like go to yoga, which I think is good for me, and where I actually feel fine and don't hurt. I got a refill on my oxycodone – which I also need for my tooth – but I definitely can't live on that. I don't know why I let the endodontist make me wait all the way until Dec. 2 for a follow-up appointment when that crazy tooth is still killing me.

I'm going to get on the phone tomorrow and try to figure out the next step of which kind of doctor I need to see and also try to get my dental appointment moved up, although I'm afraid I won't get many results on Thanksgiving week. At least I can talk to someone about about my legs it at physical therapy Tuesday.

Well, at least the rash is gone, and I am on a prednisone decrease.

Last night I read some of "Double Down," the Game Change version of 2012. I have to admit I love all that politics. It served as a nice segue to the movie I watched on TV last night. I was reading that Obama changed his mind about gay marriage after seeing "The Kids Are All Right," about two lesbian mothers whose children track down their biological father. It was a great movie that took my mind off of my aches and pains.

Thursday, November 21, 2013

Turning the corner, with a little help from yoga

Things seem to finally be turning the corner after a bad two weeks when everything that didn't hurt itched like crazy.

The allergist who gave me the penicillin test showing I was not allergic returned my call yesterday and said he was very, very sorry. He said the good news is that the test showed I would not go into anaphylactic shock if I really needed penicillin. He said that when listing allergies I can write penicillin with an asterisk. So I'm supposed to explain this every time? I think I'll just say "allergic."

The doctor said it was extremely rare to break out after passing what they call the challenge. Just about as rare as getting hit by lightening. I guess I like to do things differently.

I was folding clothes on my bed when he called, and I lay down with the laundry and cried. The combination of everything, plus the oxycodone and probably the higher prednisone dose, got to me in a way that not much else has.

Well the rash is now fading, and I am decreasing the prednisone to 20 mgs. for five days, then to 10 and back down to four.

My mystery tooth still hurts, but I see a solution down the road. Bouncing from dentist to dentist was not much fun. After my local dentist sent me to Boston, I tried to explain to Dr. Boston what my local dentist had said. He cut me off, saying, "I don't really care what your local dentist said." Geez Louise, I was just trying to explain. He said to go to an endodontist in my area to see if I might need a root canal; he was also supposed to fax some notes to said endodontist, which he did not. It wasn't hard for me to pinpoint which tooth hurt, however. The endodontist said root canals are much easier than they used to be, and after a follow-up appointment, that is probably what I will have.

I did an amazing thing last night which I think finally unclenched the muscles in my thighs, making it possible to actually start the day without taking any drugs.

I went to a Yin Yoga class down the road at the Serenity Yoga Studio. I really didn't know what this was except for that it is slow like restorative yoga but is not the same thing.

According to Serenity Yoga's website, it is  "a passive form of asana practice in which students sink into familiar floor postures for 5-minute intervals. This practice enhances flexibility and balances the flow of energy to organ systems, literally juicing up the joints, aiming for a deep level of health and well being. Yin Yoga is a yoga practice designed to encourage the muscles to let go. It targets the connective tissues, such as the ligaments, bones, and even the joints of the body. Rather than engaging muscular strength and the cardiovascular system, Yin Yoga appropriately and safely exercises the body’s connective tissue. The asanas (postures) are held for an extended time to create space in the body encouraging the release of tension and produce greater access for fluidity and mobility.

I am celebrating the new day with a cinnamon scone. I also took Maddie for an oatmeal bath, so that when we reunite tonight I predict we will both feel much better. 

Monday, November 18, 2013

Confessions of a prednisone popper

You wouldn't think I would say this, because I'm always writing about being happy when my prednisone dosage is reduced.

Well I am like a kid with a box of candy. Gimme more, more, more.

Melissa had said to increase my dosage to 10 mgs. from 4, which I did over the weekend, with no relief from pain and itching. When I talked to her this morning, I asked if it was possible to go up to 40 and then do a taper. She said it was a good idea.

So I delved into my supply of 10's and popped three more in addition to the one I had already taken.

I can tell that this morning's oxycodone has worn off, because my legs hurt again. I am going to run (I mean drive) to the store to get some more Benadryl. Maddie is scratching too, so I gave her an allergy pill prescribed by the vet. We are an itchy couple.

I am scheduled to tutor tomorrow, but I think I will switch to Friday. I have an appointment with an endodontist tomorrow to hopefully find out the reason for the mystery pain in my tooth. After that I have physical therapy. Unless the higher prednisone dose works miraculously overnight, I don't think I could make it all day without an oxycodone if I did the tutoring.

If you see a chipmunk walking down the street, it might be me.

Sunday, November 17, 2013

Of rhino horns and other things

Just wondering: Can you sue an allergist for pain and itching when he gives you a test that shows you are not allergic to penicillin and then you take the antibiotic and break out in a head-to-toe rash?

That's all I'm writing about the itches and aches for now. I'm afraid it might be getting a little tiresome (although probably not as tiresome to you as it is to me), so I'm switching the channel today.

So I am also wondering: Have you ever heard that some people think the powder from rhino horns can cure cancer?

I recently read a newspaper story saying that the quest for rhino horns is destroying entire rhinoceros populations because of a myth that rhino horns can cure cancer, among other things. That made me think of other bogus cancer cures, leading to a post on the subject in my Newsmax Health blog.

Click here to read the story.

Friday, November 15, 2013

Pain, pain go away

It turns out that the pain in my quads is probably not due to over-exercise but is instead caused by a new appearance of graft versus host disease, this time in my muscles.

When I saw my nurse practitioner, Melissa Cochran, yesterday, she said that such intense and prolonged pain didn't sound like it had come from an exercise injury, and that is my thought too. It is news to me, however, that GVHD can appear just like that, nearly five years after transplant, but I guess I shouldn't be surprised given what I am reading on friends' blogs.

Melissa discussed with Dr. Alyea the possibility of raising my prednisone to help diminish the inflammation, but he had left for the day today before the decision was final.

I am currently on four milligrams per day, and asked if I would be upping it to five. She said no, 10. Sigh. I would do anything to stop the pain that brought tears to my eyes this morning when I could hardly get out of bed, but still, the downsides are notable, including lowered resistance to illness and weakening of muscles.

I felt much better after ultrasound, heat and massage at physical therapy today, and Melissa said that if I still felt better in the morning, I could keep the prednisone at its current dose. But if the pain is severe again, I will need to take the 10.

Also on the pain front, I saw the Boston dentist, Dr. Treister, yesterday, and he said he really doesn't know what is wrong with the tooth that is causing me so much trouble. He suggested getting a consult about a possible root canal, so I set that up for next Tuesday. Sigh again. The only funny thing that happened yesterday is when I called my local dentist's office and got the same receptionist I have called over and over during the past week.

I was in a busy coffee shop and could hardly hear her when I asked for a referral to an endodontist's office. "Are you in pain?" she asked. I said I was. Her question took me aback for a minute, because I thought she had asked, "Are you insane?" I told her what I had thought she said, and she laughed and said I was actually being a good sport about the whole thing.

My visits yesterday included a stop at my dermatologist's office. She biopsied a spot on the side of my neck that looks like it might be a basal cell carcinoma that will need more Mohs surgery.

Meanwhile, it seems that I am actually allergic to penicillin, even though I took a lengthy "challenge" just last month to test if I still had a childhood allergy to the antibiotic. I passed the test and then proceeded to tell my dentist he could give me amoxicillin for an infection I have in my gum. Today I noticed that my arm had broken out, and then my legs, and then my stomach. Well, you get the idea. I took some Benadryl and can barely keep my eyes open long enough to write this.

Wednesday, November 13, 2013

Role reversal

It seems like only yesterday when I would be sitting on the couch at night and some child would come downstairs, wrapped in a blanket, upset about a bad dream or something else.

Last night I was the one who came downstairs wrapped in my blanket. My tooth wasn't too bad during the day, but at night it flared up so much that my ear hurt and I started shaking. I took two oxycodone (10 mgs. total) but it didn't help. Joe was in the den watching basketball. Maddie had thought we were in for the night and jumped off her bed and followed me down. With her on my left and Joe on my right, I stopped shaking and fell asleep. The rest of the night was OK.

Meanwhile, after tutoring yesterday I took my still-painful quads to physical therapy. I am going to do another round of sessions, which will be a combination of ultrasound and massage along with working to strengthen muscles in my hips and quads. Anybody who walks with me knows that I am sometimes shaky...although I am quite capable of walking long distances, like I did with Katie in Spain. I enjoy the people at  physical therapy, and I'm looking forward to going back there. This is important because if I plant my feet more solidly, hopefully I will stop falling.

I did something uncharacteristic, canceling tennis for today. I will, however, try to get to yoga.

I really need to write something (other than this), but I'm not sure how it will go. I had to choose between being in pain and getting a little loopy, so I chose the loopiness and took two oxycodones.

Now I just need to get myself to Boston tomorrow, where I hope Brigham and Women's top-notch dentist will fulfill my great expectations.

Tuesday, November 12, 2013

Dental drama, cont.

I finally got to see the dentist yesterday, and he replaced the missing filling.

He took an X-ray of the tooth that hurts and couldn't really locate the cause. He said that in general my teeth were looking pretty bad and that I might one day consider getting dentures, although I am not there yet. He started to write a prescription for oxycodone, but since I already have one, I didn't take it.

The problem is, it's OK for me to take oxycodone at home, but I can't go out and about with it. He said to try a tiny tiny bit. I would rather be in pain than wrap my car around a tree.

I am glad that I have an appointment with the specialist, Dr. Nathaniel Treister, on Thursday. I am trying not to glom onto the denture thing because I have faith that he will figure it out. Still, I flashed to a memory of an elderly relative using his tongue to push his dentures in and out of his mouth.

To reassure myself, I reread Dr. Treister's profile:

Associate Surgeon, Brigham and Women's HospitalAssistant Professor of Oral Medicine, Infection, and Immunity, Harvard Medical School

And his research statement:

I am principal investigator on an investigator-initiated prospective clinical trial for management of oral chronic graft-versus-host disease, supported through the DFCI hematology/oncology division. I’ve conducted and have a number of ongoing retrospective studies looking at clinical characteristics, complications, management outcomes and cost analyses of patients with oral chronic graft-versus-host disease and other oral medicine conditions. 

Monday, November 11, 2013

The toothache from hell

My sense of humor is failing me.

I called my dentist on Friday to see if I could get in there because I had lost a filling on the left side of my mouth and had a terrible toothache on the right side. This was after he had told me to chew on the left side because I have an infected tooth on the right bottom. It was the upper right that was beginning to kill me, even though he had tapped on it and said it was just referred pain from the bottom.

Debbie, the receptionist, said he couldn't get me in until Nov. 21. "You've got to be kidding me!" I said. Nope. All she could do was call me if she got a cancellation.

Over the weekend, the pain came and went and then came and stayed until last night it was almost unbearable. I paced from the den to the kitchen and back and then sat on the couch and cried. I told Joe that it was worse than any pain I had ever had. Of course this is hard to judge, because at the time that you are having pain high on the scale, it will seem like the worst. I took two oxycodone (10 milligrams total) and an Ativan and made hot chocolate. I finally went to bed around 1 a.m.

This morning I took some Tylenol so I could drive if I got an early appointment with the dentist. Thank goodness for "Morning Joe," my comfortable couch and the cozy blanket I wrap myself in while Maddie dozes on her side and I doze on mine.

I ticked off the minutes until 8:30 when I could call. I stressed the words "oxycodone" and "terrible pain." Debbie said Dr. Debian was booked solid but she would check and call me back. Shortly after that, she called and said I could come in at 4:30 today. I hope he will take an x-ray to get to the bottom of this. I hope I am not sounding like an addict, but the Tylenol didn't help, so I took another oxycodone, otherwise I would be crying again through the day. By the time of my appointment, it will have worn off so that I can drive.

I will be ticking off the minutes until 4:30.

Friday, November 8, 2013

Comedy of errors

This one's not so funny, really.

My dentist said that because of the gum infection on the right side of my mouth, I should chew on the left side.

But yesterday a filling popped out on the left side when I was flossing. I already skipped tutoring Tuesday because of my toothache, so I really need to go today for the makeup. Then I assume I will head back to Holyoke to see my favorite dentist.

When life gives you lemons...

Well last night I made applesauce. I threw in some strawberries, and it was actually very tasty.

Here is another silver lining.

I went to Target to get the waterpik (much cheaper than CVS and since I don't belong to Costco, probably my best bet at this point), and saw some long-sleeved, very comfortable T-shirts similar to the ones I get at JJill, but waaaaay cheaper (only $12). I bought a nice black one that I am wearing now.

A good way to be "armed" for another trip to the dentist.

Thursday, November 7, 2013

It's always something

Those are the words of the day, spoken this morning by my dentist while he explained the screaming pain I have had in my tooth.

It turns out to be an infected pocket created not by the usual culprit – plaque buildup – but rather by my friend prednisone. I am only on four mgs. a day, which is where I need to be to keep the graft vs. host disease in my liver in check. But as my prednisone buddies know, the miracle drug can do damage in other areas. In this case the dentist said it's because I am losing bone in my jaw due to my compromised immune system.

He gave me a prescription for an antibiotic and told me to rinse twice a day with Peroxyl and to get a waterpik. The price of the first one I saw, at CVS, blew my mind. So, alas, an afternoon that I meant to devote to writing (other than this) will now be spent shopping in the rain, probably at Target.

This will help in the short term, but eventually I will have to see a periodontist for a scraping. Sounds like more fun than I will be able to bear.

Also (whine, whine, whine) my legs, specifically my quads, still hurt. I went to see Dr. Berger yesterday, and he said to apply heat and, if I want, go to physical therapy for some treatments. I can't get in until next week, though.

I did restorative yoga with Erin last night, and it was just what the doctor ordered. I didn't feel any pain the whole time, and even my tooth behaved.

Wednesday, November 6, 2013

Can cancer promote personal growth?

This week I learned a new phrase: post-traumatic growth.

It's pretty self-explanatory, but I didn't know that in the past 10 years or so it has become part of the lexicon in studying the after effects of cancer treatment.

Nick Tate, my editor at Newsmax Health, gave me a prompt for writing on post-traumatic growth and cancer when he forwarded me the results of a new study published in the journal Psycho-Oncology showing "positive personal growth" after breast cancer diagnosis in a small study group.

Other studies of breast cancer survivors – and one that I happened to find on bone marrow transplant recipients – also documented post-traumatic growth in various arenas.

I can relate, but you have to keep this kind of finding in perspective. A nurse gave me a button that I keep in my jewelry box. It says, Cancer Sucks.

And so it does.

A post on Cancer.Net put it well:

“It should also be noted that experiencing post-traumatic growth does not necessarily mean that the person has overcome the stressor. In fact, most people who report post-traumatic growth also report simultaneously experiencing struggles with their trauma.”

To read the full Newsmax Health post, click here.

Saturday, November 2, 2013

What to do about a quadriceps strain

I didn't complain much about leukemia, so people were surprised when years ago I could not stop talking about the plantar fasciitis that was keeping me from exercising and even walking. They said I complained about that heel pain more than I ever complained about leukemia.

Of course during my last hospitalization leukemia actually did keep me from even walking. But you get in a whole different mindset when you are battling cancer as opposed to when you are back on your feet.

So it is in the same vein that I have been complaining about the quadriceps strain that I got more than a week ago. This was after I had fallen at the lake and, thinking I was doing something good for myself, got on a bike at the gym. I rode hard for about 30 minutes and then got off and went straight to lifting weights. I had no idea that my quads were so weak, and within a day I felt the strain. The prednisone that I take daily contributes to the weakness.

Poor Joe has had to listen to me repeatedly say, "My legs still hurt."

I looked on the internet and found an entry on Everything You Need to Know About Quadriceps Strains. I read that these can take 10 days or more to heal, so enough with wondering why they still hurt. I got some Traumeel cream, a homeopathic remedy recommended by a friend who is a personal trainer. And I have not gotten back on that bike, although I did have a dream last night that I effortlessly got on my own bike and went for a nice ride.

I'm not supposed to take ibuprofen or any related pain relievers because they thin your blood, and I'm not supposed to take Tylenol because it's bad for your liver, and my liver already has enough problems to ferritin overload. I did pop a couple of Tylenol this morning so I could get to yoga, having heard  that stretching is good for these pulls.

I've always been good about stretching. I guess I didn't do it at the gym because it is not my favorite place, and I wanted to get in and out. Same thing for getting on and going as fast as I could right away. I know better that you have to warm up.

Once I managed to get to yoga, having skipped Thursday because my legs hurt too much, I was glad that I went. I am looking forward to taking a restorative class Wednesday night.