MausMarrow.com …blood makes noise…

“…and I just can’t hide it.”
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It’s been a busy month since I last posted. Work on our kitchen continued two weeks beyond the scheduled three week completion and is still not quite done yet. However, we were able to mostly move back in the day before our annual Mothers’ Day gathering. The weather cooperated, and we had a very pleasant afternoon with our families, a total of 18 in attendance including us. We feasted on steamed crabs, bbq ribs, and an assortment of delicious sides and desserts supplied by our guests.

The kitchen is looking great, and it’s so much more functional with the added storage. The finishing touches will be added when we return from vacation next week.

In the midst of remodeling and preparing for the party and trip, I managed to catch my first post transplant respiratory infection, disappointing timing to say the least! I thought it was nearly gone but it worsened over the weekend. When I went for my routine bloodwork Monday, Dr. Bahrani prescribed Zithromax antibiotics which I started immediately. My blood counts continue to look good. The whites are elevated, a sign that they’re doing what they’re supposed to, fighting my infection.

May 14, 2012
WBC: 11200 (norm 3000.-11200.)
Granulocytes (~ANC): 7600 (norm 1400.-9000.)
Platelets: 365 (norm 130-382)
RBC: 4.37 (norm 3.90-4.90)
HGB (hemoglobin): 14.7 (norm 11.5-14.3)
HCT (hematocrit): 44.1 (norm 34.2-42.2)
Alkaline phosphatase, S: (norm 25-150)
AST: (normal 0-40)
ALT: (normal 0-40)

I took a Benadryl before bedtime, and it really knocked me out. Our long awaited journey to meet my donor began [not so] bright and very early yesterday morning. I fared well, all things considered, but I was completely exhausted by the time we reached our hotel in Astoria, Oregon yesterday evening. I noted our beautiful room and view at the Cannery Pier Hotel, snapped a few photos, and napped for a couple of hours. We went to dinner at a local seafood place, The Silver Salmon, chauffeured by a distinguished gentleman named Spencer in a 1952 Cadillac. Freshly baked cookies awaited us upon our return to the hotel. I think I was fast asleep again within minutes and slept soundly through the night, much refreshed upon awakening.

Just a few more hours until we finally see Mary Lou face to face for the first time! I’m both a bit nervous and extremely excited, so eager to meet and thank her but worried that I might disappoint. Nothing I say or do can adequately express my gratitude for her amazing gift of life. My perfect match!

I’ll write more soon, after the big event, and post some photos.

“Keep those high hopes, keep those high-apple-pie-in-the-sky hopes….”

Wow, it’s already been more than 500 days since my bone marrow transplant. One month from yesterday, we get to meet my donor Mary Lou and her family in Washington. I can’t wait!! It will also be our first post-transplant vacation. We’ve so much to look forward to in the near future, including a visit from our friend Heather next weekend and a visit from our friends Mike and Cindy in June.

Now that spring has officially arrived, I’ve let go of my winter dreams and am reveling in beautiful shades of the new greens, pinks, and yellows so much in abundance this time of year. Our daffodils and single tulip are gone, and our azaleas are blooming.

I had my monthly blood work yesterday, and everything continues looking good:

April 15, 2012
WBC: 7200 (norm 3000.-11200.)
Granulocytes (~ANC): 3900 (norm 1400.-9000.)
Platelets: 369 (norm 130-382)
RBC: 4.57 (norm 3.90-4.90)
HGB (hemoglobin): 15.3 (norm 11.5-14.3)
HCT (hematocrit): 46.4 (norm 34.2-42.2)
Alkaline phosphatase, S: (norm 25-150)
AST: (normal 0-40)
ALT: (normal 0-40)

Work began on our kitchen last week and is supposed to be completed by the end of next week. I expected the ensuing chaos to be unbearable but so far, it hasn’t been bad at all. Surprisingly, we were able to move the fridge and dining room table and chairs into the living room temporarily without moving out any of the living room furniture. The toaster oven, grill, and microwave are adequate for cooking, and the cats are actually enjoying exploring the new layout. We’re eager for the work to be finished and nervous about the final results but otherwise managing just fine.

We filed our tax returns late last week, days before the deadline…whew.

In other news, I traded in my long ashy brown wig and got a new short auburn one at the American Cancer Society last week. They provide free wigs to cancer patients and survivors. Michael and I both love the basic color and style but the wig is not as high quality as my silver one – the color looks too uniform and the part looks a bit “wiggy” by comparison. I’ve decided to return to the shop where I got the silver and buy a similar one in red. My consultation is Thursday. It will be fun to change colors and/or styles back and forth so easily. After many years of hair dyes, I can really appreciate the convenience. Who knows how many I may end up with, lol.

Sorry I’m so behind on posting photos. With my iPad, I’m rarely on my computer anymore. I need to set up my albums differently so I can upload pics from the iPad instead.

My friend Chris and I continue to enjoy our weekly movie nights. We finally watched Temple Grandin, recommended by Cathy, and it was excellent. We also watched Bridesmaids and enjoyed some good laughs along with some surprisingly touching moments. Our most recent watch, The Spiderwick Chronicles, was just so-so. Next week, we’ll probably go out to see The Hunger Games. Keep those recommendations coming – I’m always looking for something new.

Today’s tagline is from my Story of Hope (linked here) published on the Aplastic Anemia and MDS International Foundation site last month. I was flattered to be invited and happy for the opportunity to contribute.

Day +478 Tagline
Crazy, Patsy Cline (IDed by Chris)

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“I’m crazy, crazy for feeling so blue…”

I started writing this post after my doctor’s appointment on Monday, and the tagline was meant to be a joke because Dr. B didn’t want to see me again for another 4-6 months, i.e., he rejected me in favor of more interesting patients, ha ha. My counts are looking excellent.

March 19, 2012:
WBC: 6200 (norm 3000.-11200.)
Granulocytes (~ANC): 3000 (norm 1400.-9000.)
Platelets: 332 (norm 130-382)
RBC: 4.24 (norm 3.90-4.90)
HGB (hemoglobin): 14.5 (norm 11.5-14.3)
HCT (hematocrit): 43.1 (norm 34.2-42.2)
Alkaline phosphatase, S: 157 (norm 25-150)
AST: 30 (normal 0-40)
ALT: 31 (normal 0-40)
Ferritin: 605 (normal 12-150)

The truth is I have been feeling a bit blue and curmudgeonly this week with an especially low tolerance for [melo]drama. I guess it’s a good thing I don’t watch soaps. I’ve also been cranky about everyone’s excitement over our early spring. Am I the only one who likes winter and snow and am thus very disappointed that we had only a dusting this year? Even as a child, I never liked summer. We haven’t had any rain in awhile either. I like the peacefulness of dark, rainy days. Speaking of darkness, and while I’m on a rant anyway, I hate daylight savings time, too. Why must we muck with the time? The number of hours of daylight doesn’t change when the time is shifted in either direction! It’s supposed to be light in the morning and dark at night. You can imagine how well I fared with Alaskan summers, lol. My post transplant sensitivity to light has underscored the fact that I am a night person through and through. Okay, enough complaining, at least for now. I’m sure it’s a sign that I’m cured when I’m annoyed by minutia!

And now for some good things, besides the great check-up, that happened this week: I got the new iPad, and it’s lovely – faster, sharper, and brighter than the old. The preorder came with free engraving. I chose:

Mausi is Michael’s nickname for me, High Hopes is a musical tagline, and 11/30/2010 is the date of my rebirthday.

This week, we also had a nice family get together at my sister’s for my grandniece’s 21st birthday. She has a new baby, so five generations were there! I guess that makes me a great great aunt (but we knew that already ).

Sunday, we’re returning to The Dupont, this time with our friends, Chris and Lynn, for brunch and a production of Lord of the Dance. It will be our final show there for the season. We didn’t get tickets for next season because there wasn’t much we were interested in seeing. Maybe we’ll find something good in Baltimore instead.

Day +460 Taglines:
Shot in the Arm, Wilco (no one IDed)
Big Shot, Billy Joel (no one IDed)

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Greetings! Sorry I’ve been a little slow with updating the blog. Also, it looks like the “auto notify” feature for subscribers is broken so that no one was notified of my last post either.

I went for my checkup and booster shots at Johns Hopkins on February 16. I must be well – they took only two tubes of blood! They’ve never drawn fewer than 10 in any of my prior visits. My blood counts are looking great aside from a slight elevation of my liver enzymes:

WBC: 6290 (norm 4500.-11000.)
ANC: 2660 (norm 1500.-7800.)
Platelets: 352 (norm 150-350)
RBC: 4.54 (norm 4.00-5.20)
HGB (hemoglobin): 15.3 (norm 12.0-15.0)
HCT (hematocrit): 44.2 (norm 36.0-46.0)
Alkaline phosphatase, S: 211 (norm 25-150)
AST: 85 (normal 0-40)
ALT: 75 (normal 0-40)

I also received the following booster immunizations:

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

I got two shots in each arm. A bonus tune comes to mind: “You had to be a big shot, didn’t you?” Both arms were extremely sore for the next several days. I feel sorry for babies going through this, not even able to comprehend what’s going on, knowing only that someone is hurting them.

The best news was that my next appointment with the transplant doctor isn’t until my two-year checkup on December 2! In the meantime, I’ll continue getting regular blood draws with my local hematologist just to keep a close watch on everything.

We finally chose a kitchen contractor last week, and work is scheduled to begin the first week of April. I’m not looking forward to several weeks (if all goes well) of chaos and construction but the end result should be nice.

Disappointingly, it looks like our winter is about done here with essentially no snow this year. It’s chilly but none of the white stuff is forecast for the next 10 days. Snow later than that is very uncommon here. That’s probably good news for most of you who are looking forward to spring – I know I’m in the minority. I do admit it will be great to see the greenery and flowers replacing all the browns and greys.

I’m sure Michael is eagerly anticipating warmer weather for riding his new “little red bike” – a carnival red Triumph Thunderbird SE motorcycle he got last weekend. We took the older, larger Rocket III in for service and ended up trading it in for a newer, smaller one instead.

This weekend, we’re looking forward to returning to The Dupont Theatre with my sister and brother-in-law for Sunday brunch in the Green Room and La Cage aux Folles starring George Hamilton. It should be fun.

I was recently asked to write a “Story of Hope” for the MDS and Aplastic Anemia website. I’ll let you know if/when it’s published.

And now what you’ve all been waiting for, the Tag Line update, lol.
Day +436: Feelin’ Stronger Every Day, Chicago (no one IDed)

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.