MausMarrow.com …blood makes noise…

A quick update – I had my six month check-up at Wilmer eye clinic yesterday and am doing well. My eyes are still very dry but there are no cracks or erosion. I’m to continue using Restasis and over the counter lubricant drops as well as an ointment at night. My next follow-up is in another six months.

The dermatitis on my face has been worse lately. I think it is nearly clear and then get a fresh outbreak of itchy bumps. However, if this is the worst I have to suffer, I’m delighted!

I’m happily eating and enjoying meals again, reveling in my gluttony when something is extra good. I’m trying hard to wean myself from the sweets I’ve become addicted to the past year and move back toward my prior savory preferences. I feel much better when I eat a lot of protein. In fact, I’ve been feeling great with lots more energy! My life is close to my pre-illness norm.

These days, we’re preoccupied with making decisions about remodeling the kitchen instead of remodeling me .

Last week we saw a live performance of Blast! at the Dupont Theatre in Wilmington, preceded by a delicious brunch buffet in the hotel’s luxurious Green Room. Both were super.

Thanks for the movie recommendations! Cathy, I got but haven’t yet watched Temple Grandin. Currently, I’m reading Duma Key by Stephen King. Anyone else have book or movie ideas?

I’ll write more next week after I have my booster shots and check-up with the transplant team at Johns Hopkins.

Day +419 Tagline
Movies, The Statler Brothers (IDed by Cathy)

“Thank you, Thomas Edison
for giving us the best years of our lives.”

I had routine blood work today, and almost everything continues to look good:

January 24:
WBC: 5800 (norm 3000.-11200.)
ANC: 3200 (norm 1400.-9000.)
Platelets: 351 (norm 130-382)
RBC: 4.11 (norm 3.90-4.90)
HGB (hemoglobin): 14.8 (norm 11.5-14.3)
HCT (hematocrit): 44.1 (norm 34.2-42.2)
Alkaline phosphatase, S: 190 (norm 25-150)
AST: 67 (normal 0-40)
ALT: 68 (normal 0-40)

My hematologist believes the slight elevation of liver enzymes is due to mild GVHD. I’ll be checked again in a few weeks.

The dentist filled my two cavities today and prescribed a fluoride toothpaste. I return for a regular cleaning and checkup in June.

I saw the dermatologist January 9. The CeraVe wash and Promiseb cream are helping with the seborrheic dermatitis, so I don’t need to return for a year.

The only prescription med (aside from the topical cream) I’m taking currently is Previcid for acid reflux several times a week. Life is returning to normal!

What prompted this week’s tag line? I saw The Girl with the Dragon Tattoo last week. Wanting to know more details, I’ve been reading Steig Larsson’s trilogy this week on my Kindle. These are not literary greats but are definitely page turners. I usually like books better than their film counterparts but this time, the film followed the book very closely, although the answer to the central mystery was changed somewhat. I suspect the change was made to keep the film from being too long and did not affect the story in any bad way.

For me, both books and movies are great medicine. We have a huge DVD collection, and my friend Chris and I have movie night every week. This week we’ll probably watch the original Swedish versions of the Larsson films. Recently, we’ve been enjoying the BBC television series, Merlin. If you have any film or book recommendations, please include them in your comments or send me an email!

Tag Lines…
Day +400: Holding Out for a Hero, Bonnie Tyler (although I was thinking of the Shrek version by Frou Frou), (IDed by Sarah)
Day +408: Hello Mary Lou, Ricky Nelson (IDed by Greg)

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“I said, ‘Hello, Mary Lou
Goodbye heart
Sweet Mary Lou
I’m so in love with you

I knew Mary Lou
We’d never part
So hello Mary Lou
Goodbye heart’”

Michael and I are very excited! I’ve been corresponding with my donor, Mary Lou, all week. She’s a delightful person, as I knew she must be. We’re flying to Washington state to meet her and her family in May, so I’ll finally be able to thank her face to face. In the meantime, we’ll continue to be in touch. Getting to know each other is both interesting and fun! Words can’t begin to describe how I’m feeling.

Mary Lou has kindly given us permission to post her comments about being a donor:

“My [bone marrow] donation experience was wonderful – I received so much support from every person that I encountered throughout the process. I live in SW Washington – our home is actually on the Columbia River which borders Washington and Oregon so I’m about as far south in the state as you can go!  I had to go to Seattle, which is about 3 hours away, on 3 separate occasions for screening, pre-op and the procedure.

“My husband and I had signed up about 5 years before I was called as a potential donor. I couldn’t believe how easy it was to get on the registry – just provide a cheek swab and you are good to go! I honestly don’t understand why anyone who is able, would not sign up to be on this registry. The discomfort/inconvenience a donor goes through is nothing compared to the gift that they can give. Many people I knew were skeptical about me doing this and would say, ‘I could never do something like that,’ and that is just so hard for me to understand.”

If you’d like to join the NMDP (National Marrow Donor Program) registry and potentially save someone’s life, please visit the Be The Match website. There’s a link in the lefthand column under Useful Info.

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“Where’s the street-wise Hercules
To fight the rising odds?
Isn’t there a white knight upon a fiery steed?
Late at night I I toss and turn and dream of what I need
I need a hero
I’m holding out for a hero ’til the end of the night”

I just received wonderful news from Johns Hopkins – contact information for my donor! I’m emailing my hero now to thank her a million times for saving my life.

Happy New Year, everyone!

Tag Lines…
Day +372: DNA, Jonathan Coulton (no one IDed but Tim made a valiant attempt)
Day +386: Almost Cut My Hair, Crosby, Stills, Nash & Young (IDed by Mike…sort of)
Day +395: Someone Keeps Calling My Name, Harry Chapin (no one IDed)
Day +395 rejected: My Wife and My Dead Wife, Robyn Hitchcock (no one IDed – based on the lack of comments on his New Year post, Michael says there must not be any Robyn Hitchcock fans out there )

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“…My name is Jonathon, I’m fifty seasons old
I say it that way ’cause I love
the changes each year holds
But as I look around I see some changes nature never planned
I guess it’s time to change ourselves, at least while we still can
Someone keeps calling my name….”

The journey continues – yes, there were doubts, tears, fears, pain, sorrow, frustration, boredom, monotony, hope, joy, cheers, happiness, and love. Emotions meant to be felt!

New Years is a time of reflection as well as looking ahead. First and foremost, to all who are on the same journey as Karen: we wish you a great 2012 and hope to share experiences and both small and large victories ahead.

Thank you to all for the support, encouragement, and sometimes just a different perspective.

This December 31st Tagline may not be as emotional as the theme from ‘Rent’. However, it does reflect Karen’s striving to have life be ordinary and to enjoy the simple things like bread. Normalcy. We have gradually gotten used to the idea that blood counts really don’t have to be done daily…every other day, weekly, or even monthly. Cancer and GvHd are never far away, but they are not consuming or haunting each moment.

I still plan to do a list of rejected taglines (songs) – although they may have accurately captured the mood of the moment, we often went for a softer delivery. Ok, for the curious here is a prime rejected tagline example: “… My wife and my dead wife, Am I the only one that sees her….” Yup there was lots more stuff like that one last year.

Lastly, I am going to shift this a little to pass a big THANK YOU to our Soldiers, Sailors, Airmen, and Marines for their service.

Best wishes for the New Year!
Michael and Karen

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“It happened just the other day
It was getting kind of long
I could have said it was in my way”

Okay, not almost. As you can see in the “before” photo, my hair was just plain wild…so I got it buzzed on December 14, more than a year after my last haircut. My “after” pic is in the gallery. All of my doctors are in agreement that my hair probably will not ever be much thicker than it is now, so I’m seeing lots of caps and wigs in my future. I readily admit I miss my hair but recognize it’s a small price to pay in exchange for my life. Still, I’d rather have both (along with all of my brain cells intact, self-hydrating eyes, and fully functional salivary glands). Just call me greedy. By the way, for readers who have an SCT or BMT in their futures, permanent hair loss is not common. It’s more common to have changes in color or curliness.

After the haircut, I finally ordered new glasses. My prescription was already 4 months old. The new glasses are almost like the old except a bit smaller. They should be ready next week.

These small tasks somehow feel larger and more significant, in a good way, than I expected. Paradoxically, their significance lies in their fundamental ordinariness. I’ve not had any debilitating physical impairments for many, many months but I’m finally moving forward mentally, past my illness and resuming normal (delightfully mundane) life as I knew it prior to my MDS diagnosis.

Another milestone – after Thanksgiving, I eliminated the dietary supplements from my morning milkshakes (the mainstay of my diet for the past year). In case you noticed a recent drop in Häagen-Dazs stock, as of December 10 I resumed eating all “regular” food with no milkshakes at all.

December 15, I had my 6-month dental check-up. Unfortunately, my enamel is eroding, and I have two new cavities at the root line underneath old, large fillings, most likely due to my severe dry mouth. The old fillings will have to be removed to do the new ones so I see a lot of money going to my dentist next month. I hate getting dental work. It isn’t especially painful but the sounds and vibrations drive me crazy, admittedly a short trip.

Speaking of oral issues, I tried the steroid rinse for a few days. It tasted terrible with a lingering aftertaste and made my mouth a little sore. I worried about upsetting the balance and improvement I’d achieved and consulted with NIH and Hopkins doctors via email. They were in agreement that I should discontinue the rinse and continue doing the acupressure. The NIH dentist, after conferring with her colleagues, said that the rinse might not be that beneficial for me anyway since not much would be absorbed in the salivary glands where I need it.

I saw my local hematologist, aka my favorite doctor, on Monday. My blood counts are very good:

December 19:
WBC: 5100 (norm 3000-11200)
ANC: 2800 (norm 1400-9000)
Platelets: 284 (norm 130-382)
RBC: 4.11 (norm 3.90-4.90)
HGB (hemoglobin): 14.5 (norm 11.5-14.3)
HCT (hematocrit): 42.3 (norm 34.2-42.2)
Alkaline phosphatase, S: 215 (norm 25-150)
AST: 54 (normal 0-40)
ALT: 48 (normal 0-40)

Dr. B says it will take several months for the Vidaza to be completely out of my system and to determine my new baseline. He commented again how remarkably well I’ve done. I replied that I give him a large part of the credit for my current well being. Beginning with my first meeting with him in January 2010 and continuing throughout the process, he made the right decisions regarding my treatment. He biopsied me right away and referred me to University of Maryland where I could be seen by a specialist within days instead of waiting weeks to get in at Johns Hopkins. He conferred with my oncologist at Maryland and oversaw my Vidaza treatments. He always treated me with kindness and respect and answered my endless supply of questions patiently, frankly, and intelligently. He encouraged my consulting with multiple facilities prior to choosing one for my transplant. He took the time to read and discuss research papers I got from other sources. He replied to my emails quickly and succinctly. He clearly understood and sympathized with my fears and doubts. He never downplayed the seriousness of my illness but remained ever hopeful. He gave me good advice (better than that of my transplant doctor) for staying well while awaiting engraftment and beyond. He prescribed medications and gave medical direction sensibly. He wasn’t afraid to confidently convey his own opinions, including his reasons, but knew his boundaries and referred me back to my oncologist or transplant team when appropriate. He was never too busy to chat informally about everyday things that had nothing to do with illness – books, films, electronics. He listened. He cared. My next follow-up with him isn’t until mid-March. I’ll miss him.

Michael commented that I have Dr. B high on a pedestal. I guess that’s true. After reading and hearing the stories of so many others, I realize how differently everything might have turned out if I hadn’t received such good care from him and my other doctors, especially in the beginning when I knew so little, and critical decisions had to be made. Many others have not been so fortunate.

Both Michael and I will need time to adjust to seeing my blood counts far less frequently than twice a month. They’ve simultaneously been our yardstick to measure progress and our lifeline to sustain hope.

Yesterday, I saw my dermatologist. She believes the itchy bumps on my face and ears are seborrheic dermatitis. The cream prescribed by her PA last time isn’t helping so she’s trying me on a different one with follow-up in a few weeks. She loved my shoes, the purple “oil slick” Danskos I got last year .

I’ll probably finish my physical therapy next week.

As always, I love my iPad. I’m also enjoying my Kindle and getting accustomed to my iPhone. The tiny screen on the phone is hard on my eyes, and Siri doesn’t seem to understand me as well as my old phone did, but I do like the smartphone convenience for email, calendars, and surfing. It sure is a lot less weighty than carrying around the iPad.

I’ve started a new album in the photo gallery for the coming year and posted some snapshots. I need to post some more from October and November but that will happen another day.

Guess that’s it for this week’s news. Happy Holidays, everyone!!!! We have much to celebrate.

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“DNA, in fact you’re in every part of my body
Each cell has a nucleus, each nucleus has chromosomes
And DNA, baby, that spells DNA”

One week ago I had my first annual post-transplant check-up at Johns Hopkins.

I started by “donating” 11 tubes of blood for an array of tests, followed by 5 immunization shots and a bone marrow biopsy. For fellow transplantees (or transplant wannabes) that want to compare notes, I had the following vaccinations:

• Diptheria/Tetanus
• H. influenzae type b conjugate [bacterial meningitis]
• Hepatitus B
• Inactivated polio
• Pneumovax 23 [pneumococcal pneumonia]

I got two injections in one arm and three in the other. Only one hurt at all and another bled some and left a big bruise.

In two months, I return for boosters on all of these except Pneumovax; in a year, I get all of them again with the addition of MMR (live attenuated virus) [measles-mumps-rubella]. I already had my seasonal flu shot a couple of months ago and am supposed to repeat it annually.

My 8th bone marrow biopsy was the least pleasant thus far, although not excruciating. As usual, I lay on my stomach and had lots of lidocaine injected into my lower back/butt cheek to numb the area. Then the nurse practitioner drilled into my bone and attempted to get a core sample aspirate. I noticed it hurt more and was taking longer than usual so asked what was wrong. She asked if I’d ever had a dry tap (no, I hadn’t) and noted that my bones are very soft. After three attempts in different spots of the bone without externally relocating the needle, she took the bone fragment biopsy and then withdrew, numbed a new location, and went in laterally for the aspirate. I told her to not give up until she obtained a good sample because I wanted the diagnosis to be as thorough and accurate as possible. This time, she was successful. I was a bit shaky afterwards but think it was because she slapped a big bandage on my butt and sent me on my way as soon as she finished. Ordinarily, they get me to lie on my back to put pressure on the site while I relax for 15 minutes to assure there’s no bleeding and that I’m okay. I was okay after I had a chance to sit down for lunch, although I was rather sore and stiff for the next couple of days.

We saw my transplant nurse practitioner, Audra, and doctor, Dr. Jones, after lunch. My blood work was quite good:

December 1:
WBC: 2920 (norm 4500-11000)
ANC: 1610 (norm 1500-7800)
Platelets: 433 (norm 150-350)
RBC: 3.73 (norm 4.00-5.20)
HGB (hemoglobin): 13.1 (norm 12.00-15.00)
HCT (hematocrit): 36.8 (norm 36.00-46.00)
Bilirubin: 0.6 (normal 0.1-1.2)
AST: 44 (normal 0-31)
ALT: 42 (normal 0-31)
Alkaline Phosphatase: 188 (norm 30-120)
Ferritin: 708 (norm 10-300)

We discussed the testing and results from the NIH study, and Dr. Jones prescribed the NIH recommended steroid mouth rinse to try to reduce inflammation and slow or stop further fibrosis of my salivary glands. He also prescribed prophylactic Nystatin rinse to prevent oral thrush. I’m to try this regimen for 2 weeks and then evaluate improvement, if any. Audra emphasized the importance of good dental hygiene and regular visits to my dentist because extreme xerostomia (dry mouth) like mine can cause loss of enamel, cavities, and other oral problems. She recommended seeing my family doctor to prescribe something for my osteopenia because I’ll need long term follow-up. For my eyes, I’m to continue the Restasis and Refresh drops daily as previously prescribed. After more discussion and a brief physical, Dr. Jones said he didn’t want to treat my other GVHD symptoms because the treatments have many adverse side effects, and having a slight amount of cGVHD actually helps prevent relapse due to the graft vs. leukemia effect. I’m to return for a check-up in two months.

Because the Vidaza treatments might exacerbate the GVHD, Dr. Jones decided to stop after 10 instead of going the full year. The post transplant treatments are experimental, believed to help the new immune system target any potentially lingering disease, but there is no documented evidence yet to know if effective or the optimal number of treatments. So I had a total of 21 Vidaza cycles, 11 prior to transplant and 10 afterwards, a total of 210 injections in my stomach! They weren’t as bad as they sound, and I will be always grateful that this relatively new (within the last 9 years) drug most likely saved my life by putting me into full remission, buying me time to find a fully matched donor for my transplant and allowing me to live a relatively normal life in the interim.

On a side note, something I really like about Dr. Jones is the obvious respect he shows his nurse practitioner, Audra. He included her in every discussion and asked for (and actually listened to) her opinions. My visits do seem rather rushed in this very busy clinic but both Audra and Dr. Jones are accessible via email and respond promptly to questions and concerns.

Before we left, we visited some of our old favorite nurses and techs on Ward 5B – Molly, Fran, Crystal, and Carol. They were delighted to see us and couldn’t believe a year had passed so quickly.

I saved the best news for last. I got my biopsy results yesterday, all good! Here’s a quote from the report:

“The marrow is normocellular (40%) for age with a normal M:E ratio. All hematopoietic elements are present with full range of maturation. Megakaryocytes are normal in number and morphology. The associated aspirate shows trilineage hematopoiesis with complete maturation. There is no evidence of increased blasts or significant dysplasia. Flow cytometry studies show no increase in blasts. Chimerism: no evidence of patient DNA.”

In simpler terms, this means my bone marrow cells are 100% donor and show no evidence of disease. HURRAY! Another milestone completed.

Oh, I nearly forgot to mention that the acupuncture and/or acupressure seem to be having a positive effect. The past couple of weeks, my taste buds are better than they’ve been in a year. I’m eating nearly normal meals again and have been able to cut back on the supplements.

Just a reminder, our blog entry titles (tag lines) are all excerpts from song lyrics. These are intended as a bit of entertainment for Michael and me to come up with apropos items and for our readers to identify songs and artists and let us know via comments, private emails, or conversations. There are no rules and thus no way to “cheat” – we don’t care if you find the answers stored in your brain, online, or elsewhere! We’re just having some fun and hope you are, too.

Time to catch up on some of those tag line identities…
Day +329: We Work the Black Seam, Sting (no one IDed)
Day +343: I Lost on Jeopardy, Weird Al Yankovich (no one IDed)
Day +351: Silver Threads and Golden Needles, Linda Ronstadt (IDed by Greg)
Day +359: Thank You, Alanis Morrisette (no one IDed)
Day +365: Tubthumping, Chumbawamba (IDed by Leslie, Robb, & Dana)

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“You’re never gonna keep me down…”

Happy Rebirthday to Me!

Today, my new immune system is one year old. Our journey is still a long ways from being complete but one year is a significant milestone. Tomorrow, I go for my annual checkup at Johns Hopkins which will include a bone marrow biopsy and childhood vaccinations in addition to the usual blood draws and general examination.

We can hardly believe how quickly the time has passed. I’m incredibly fortunate to have fared so well – no infections, no immunosuppressants, no steroids. I engrafted quickly despite having an unrelated donor. My white blood counts returned to normal range within the first month, followed swiftly by my platelets within the first two. My red blood count has hovered slightly below normal (probably due to the Vidaza) but the hemoglobin and hematocrit components have stayed solidly in the normal range since February. My day +55 and six month bone marrow biopsies both showed 100% donor cells with no dysplasia and no chromosome abnormalities.

There’ve been a few bumps in the road…chronic nausea, unrelenting dry mouth and dysguesia (everything tastes wrong), dry eyes, osteopenia, splotchy skin, and very sparse hair. I participated in a study at NIH and was diagnosed with chronic graft vs. host disease affecting my eyes, skin, mouth, salivary glands, gastrointestinal tract, and vagina. These are not currently affecting my health or quality of life dramatically but they are annoying. My hematologist thinks I have “just enough” GVHD to keep relapse away. He hasn’t steered me wrong yet. I admit to being frightened about how quickly everything could change but I force myself to remain optimistic about the future.

In many ways, it’s been even harder on Michael than on me. While I’ve had to focus only on getting better, he’s had the shopping and household chores on top of his long work hours, not to mention the general stress of worrying over my illness and my transplant. We’ve had lots of support from our families, for which we’re eternally grateful. Our friends have also been there with us, cheering us every step of the way. Thanks to all of you and especially to my donor!

We’re celebrating this evening with dinner at our local hangout, Josef’s. Michael and the cats got me new gadgets for my rebirthday gifts – an iPhone 4S and a Kindle Touch. I’m already up to chapter 6 in Grisham’s latest, The Litigators, and the new phone will arrive later today via FedEx. I’ll be able to load it with my music and many of my apps from my iPad.

Life is great!

“Thank you India
Thank you terror
Thank you disillusionment
Thank you frailty
Thank you consequence
Thank you thank you silence”

Happy Thanksgiving, everyone!

One year ago I was in the hospital undergoing conditioning chemotherapy in preparation for my bone marrow transplant.
In many ways, it’s been a long year but in others, the time has passed as quickly as the blink of an eye. I’m very thankful to be alive and feeling so well on this beautiful day.

A big thank you to all of our family and friends who’ve loved and supported us throughout, with extra special thanks to the brave and generous woman who donated her marrow to save my life. I hope I’ll be able to know her identity soon so that I may thank her personally.

We wish you all a safe and happy holiday. To our non-USA readers, we wish a beautiful day as well!

p.s. I saw my hematologist yesterday, just the regular monthly check-up. I also got my stitches out from my salivary gland biopsy. My blood counts continue to look good:

November 23:
WBC: 4700 (norm 3000-11200)
Granulocytes (~ANC): 3100 (norm 1400-9200)
Platelets: 277 (norm 150-450)
RBC: 3.87 (norm 3.90-4.90)
HGB (hemoglobin): 13.6 (norm 11.5-14.3)
HCT (hematocrit): 39.7 (norm 34.0-42.2)
Bilirubin 0.6 (normal 0.0 – 1.2)
AST 40 (normal 0-40)
ALT 37 (normal 0-40)
Alkaline Phosphatase, S  194 (norm 25-150)

I got the salivary gland biopsy results back from the NIH dentist:

“Based on the pathology report and your clinical exam, it looks like you have cGVHD of your salivary glands and, to a much lesser extent, of your mouth in general.  Your salivary glands are chronically inflamed, and they are beginning to become fibrotic and decrease in size.  There are patchy groups of immune cells around the ducts (where saliva exits) and also around the acinar cells, which make the saliva. This biopsy result is very similar to what is seen in early Sjogren’s syndrome, though there are some differences.  You may benefit from using an anti-inflammatory mouth rinse, such as dexamethasone, to control the inflammation in your salivary glands and prevent or slow further fibrosis of the glands.  Unfortunately, once the glands have become fibrotic, they won’t return to function.  I would be happy to call in a prescription for corticosteroid (dexamethasone) mouth rinse for you.  This is something you would use 3 times a day for 2 weeks, and then if your dry mouth improves as the inflammation goes down, you could continue using it every other day.”

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Time to catch up – I’ve been procrastinating about writing more.

My birthday was quiet but nice. I’ve always loved my birthdays but was especially happy to see this one. So many times during the past year, I wondered if I would. I visited Michael at work, got my new military ID (with my wig on), and went out for Chinese lunch. My niece’s husband kindly cooked chicken and dumplings for my dinner, despite his having a tooth pulled that afternoon. Thank you, John! We finished with pumpkin cheesecake for dessert.

The next day, October 27, was my monthly visit with the hematologist. He removed my skin biopsy stitches. My blood counts continue to look good: 

October 27:
WBC: 4400 (norm 3000-11200)
Granulocytes (~ANC): 2900 (norm 1400-9200)
Platelets: 307 (norm 150-450)
RBC: 3.75 (norm 3.90-4.90)
HGB (hemoglobin): 13.0 (norm 11.5-14.3)
HCT (hematocrit): 38.0 (norm 34.0-42.2)
Bilirubin 0.6 (normal 0.0 – 1.2)
AST 37 (normal 0-40)
ALT 35 (normal 0-40)
Alkaline Phosphatase, S  197 (norm 25-150)

Last week, I completed my 10th and possibly final post transplant Vidaza cycle (to be decided at my December 1st one year check-up). I experienced all over joint and muscle soreness this time around. Every cycle is different. My bloodwork was typical (for me) at the beginning of the cycle. I’m kind of nervous to see how it will change after I stop the chemo.

November 7:
WBC: 3100 (norm 3000-11200)
Granulocytes (~ANC):   ? (norm 1400-9200)
Platelets: 594 (norm 150-450)
RBC: 3.70 (norm 3.90-4.90)
HGB (hemoglobin): 13.4 (norm 11.5-14.3)
HCT (hematocrit): 37.7 (norm 34.0-42.2)

Last Tuesday, I went to the dermatologist and got prescripions for permethrin (same as the pet med, Revolution) cream in case I have skin mites and a topical steroid cream for the itching. I return for a follow-up in a month. The permethrin doesn’t seem to have helped thus far but I still have to do another dose next week.

I also saw an orthopedic doctor last Wednesday. He suggested I get the Fosamax or equivalent prescribed by my oncologist or family doctor because it should be monitored regularly. He said the ortho docs generally treat a specific problem and then don’t see you again unless it recurs or a new one crops up. He did prescribe physical therapy – stretching and trunk strengthening for my back. I started yesterday and will go 2-3 times weekly for a month or two. They’ll mainly be training me for exercises I should be doing on my own at home over the long term.

Monday, I returned to NIH and had an acupuncture treatment for my dry mouth. It was my first time, and I had no idea what to expect (maybe just as well!).  The acupuncturist, Dr. Ge, first situated me comfortably in an armless curved chaise lounge type therapy chair. She asked me to describe my symptoms, including onset, duration, and intensity. Then she walked around me and examined my face from every angle and also examined my tongue. After that, she inserted the needles (not golden) in my face. This hurt more than I expected although not unbearably. I could feel the pin prick sting and tingle (and kept thinking, “What if I sneeze?”) My brother-in-law took some photos which I haven’t had the courage to look at yet. The idea of seeing the needles hanging off my face creeps me out a bit. He said there were seven, although it seemed like more when she was inserting them. I’ll look at the pics soon and post if it seems appropriate.  She then rotated the needles gently and instructed me not to move my face or head and to relax quietly for 30 minutes. When she returned, she removed the needles and said she had read my entire case history. She doesn’t want to do any more acupuncture until I’ve been done with chemo for several months and my body’s had a chance to return to a more nomal state free of the toxins. She said she puts a needle in each ear of her Sjogrens patients. The needles remain for two weeks at a time and are manipulated gently by the patient daily. This continues for six sessions. Ugh. It sounds awful but she says they’ve had great success.  I guess I’ll try it in hopes of fixing my dry mouth and taste buds – better a few months of discomfort than to be on medication with associated side effects for a lifetime. She wants me to come back in March. In the meantime, she wants me to do acupressure at home, gently massaging a spot below my lower lip and lines in front of my ears along my jawline twice daily.

After the acupuncture, I saw the dentist, Dr. Mays, to get a biopsy of some minor salivary glands. The procedure was explained in full, and I received a shot of local anesthesia after having the opportunity to ask as many questions as I wanted. There are more than 300 minor salivary glands in addition to the two major parotids. The procedure was to remove a few of these minor glands from inside my mouth, below my lower lip Fortunately, the pathologist Dr. Ilias (forgot his last name), didn’t have to cut very deep before some popped out. Sometimes they use dissolving sutures to close the cut but he chose to use silk thread (not silver) instead so they wouldn’t irritate my very dry mouth. I got a total of three stitches that I can get removed locally next week. I had to use an ice pack, alternating 20 minutes on and off for the rest of the day and rinse with warm salt water but overall, the procedure wasn’t bad. I’ll get results in about a week. In addition to using the glands in their research, they’re checking further for gvhd. Dr. Mays is a super nice dentist – I wish she had a private practice close to home. 

Once again, I was thoroughly impressed with all the folks at NIH. I received follow-up calls yesterday, confirming I’m okay and reiterating instructions. I also received an email from the dentist and will be getting a call from the acupunturist in a couple of weeks to check on the acupressure progress. 

Guess that’s it for the medical news. I can’t believe my first rebirthday is coming up in just two weeks!