Friday, May 24, 2013

April - in photos

April was a busy month with so much focus on me and multiple myeloma.    I felt like I made some very good contributions to pushing forward the need for support for those of us with mm, but in the end, I crashed.  All of that focus on mm reminded me of this awful cancer that is in me.  Most days, I live a regular life - I work, I play, I pray, I take trips to the ocean, I walk, I eat good food and occasionally drink good wine.  Just a regular life.  Multiple myeloma seldom rears its ugly head to both me.  Yes, of course I have the aches and pains and annoyances of living with mm, but I can't say it ever is debilitating.  I am so fortunate, I know.  Spending so much time intensely focused on mm sent me spiraling downward into a big crash.  I do not like to focus on the 'uncurable' part of mm.  I don't even want to think about it. I guess I never stopped to think that saying 'yes' to so much work for mm would have that impact on me.  In hindsight, I wonder how could I not realize that, but hindsight is always so smart!  In the end, I went away for a few days to the Kripalu Yoga Center in the Berkshires and pulled myself back together.

Here's my April journey in photos and video:

The Boston Marathon.  My good friend Joe ran the Marathon for the MMRF Power Team.  He ran in my name.  Thankfully, he was not injured in the horrific events that happened after he crossed the finish line.  I will never forget that day.

And then there was the Race for Research for the MMRF.  Team Multiple Miracles was quite amazing!  We had 42 team members and raised just under $24,000.  I ran all but a few feet of the race, much to my surprise - you may remember that just 7 months earlier, with the September Race, I had all I could do to make it around the course.  I am so pleased with my progress!  This year, I was honored with the Spirit of Hope Award and my team received an award for being the highest fundraising team.  Big day for Team Multiple Miracles!!

And then there was the Music Heals the Soul fundraising evening for the Zakim Center for Integrative Therapies at Dana Farber.  This is where I receive acupuncture.  Dr. Anderson was honored that evening for his amazing work with multiple myeloma research.  Lenny Zakim was his patient and together they worked to bring the Zakim Center to life.  It was a wonderful evening!  The evening was capped off with this video that Molta Media created:

And one final video, created by Joseph:

Yes, it was a full month.

To good health for us all as we enter Memorial Day Weekend.

Friday, March 22, 2013

Anniversary #2

Two years ago today, I was diagnosed with multiple myeloma.

What to say, as I reflect on these past two years?  To say 'life has changed' seems trivial.  Of course life has changed and I've written extensively about that.  But where am I today, two years later?

Location-wise, I am sitting in the waiting room at the oncologist, awaiting my monthly labs.  Now what were the chances that I should find myself here on the anniversary??  An odd coincidence, I would say.

Physically, I continue to regain my strength.  I still have annoyances sometimes with my feet, my hands, my jaw, but they honestly are not severe enough for me to complain, though sometimes I do.  I wish I felt confident enough in my abilities to say that I have been hiking all winter, but maybe next winter.

Cognitively and emotionally, I continue to make strides, too.  I feel less 'fogged in,' though I am occasionally surprised by just how thick the fog can be at times. A few examples:  last week I traveled to the Joslin in Boston for my diabetes check-up.  Before leaving, Joe reminded me of his taking me there a year ago for a check up.  On the one hand, it is such a wonderful thing to be able to now drive myself to my appointments.  At this time last year, I wasn't driving very far.  On the other hand, I have absolutely no recollection of last year's appointment.  No matter how hard I try to remember it, it's not there.

Similarly, a few days ago a friend was telling me about a facial she just had.  She was enthusiastic about it and asked me, "do you go for facials?"  Hmmm.  Do I go for facials?  I felt like a deer in headlights.  Do I go for facials?  Well, do I?  I have no idea how I responded but I thought about that question for days...because I had no answer, no recollection.  Surely I haven't had a facial since my diagnosis, but before that?  I think I did occasionally.  That's the best I recall.  Anyone out there know the answer??

It's those silly little things that always snap me back to the reality of what I experienced in 2 years.  It's also those things that remind me of my on-going recovery.  I tend to think of myself as strong and healthy.  I certainly feel that way the majority of the time and I think most people view me that way.  No one would look at me and think I have cancer or diabetes or any illness at all.  I see myself as having a strong will, a great ability to overcome obstacles, and a mostly positive outlook.  But I am still recovering.  I need to embrace that with a little more acceptance and awareness.

It's a balance, though, isn't it?  My Joslin dr. noted that I need more balance in my diabetes care and in my life.  No kidding...I've been working forever on living in balance! I recognize that I can approach certain things full steam ahead and like a bull in a china closet.  That's not always a bad thing.  It truly is what pulled me through many days over the past 2 years.  But mindfulness and intention can be fleeting experiences in my daily living.  I hope to change this moving forward and I think I can.  I feel like a new and different person.

Well, my labs are back.  Low WBC and ANC.  No surprises there, though they are low enough that I will exercise extra caution over the next few days.

And now this new and different person is heading to the beach.  Nothing like a walk on the beach to clear one's head and help lift the fog.

Sunday, February 24, 2013

Another snowy day

I do believe this is the 3rd weekend in a row where we have had a lot of snow.  Right now, there is about 9 inches of new heavy snow - and it's still snowing.  Last winter, we had so little snow.  I guess Mother Nature is making up for it this year.  With an unplowed driveway, at least I have the opportunity to catch up on things I've let slip.

It's an unexpectedly busy time for me with multiple myeloma.  I was at Dana-Farber last week and received another clean bill of health - yay!!  I return tomorrow for an interview.  I've mentioned in past posts that I have been enjoying the benefits of acupuncture, some at the Zakim Center at DF, other times near home.  The Zakim Center for Integrative Therapies has its annual Music Heals the Soul coming up on May 1st.  This year, Dr. Anderson is the honoree.  The media department at DF asked if he had a patient who participates in the Zakim therapies and he mentioned me.  So tomorrow I will go down to Boston to be interviewed and filmed - and have an acupuncture session :-)  I'm not sure exactly what they will do with the filmed interview but I guess I should ask!

I've also been using a new app that the Nutrition Department at DF just launched.  Ask the Nutritionist - Recipes for Fighting Cancer.  It may only be available for the iPhone, but I'm not sure.  If you can access it, it is worth it.  I have used several of the recipes and they are delicious! Anyway, I still see the nutritionist at the Zakim Center and she asked me to try out the app and review it - with another media specialist at DF!  I did that last week.  I'm not quite sure what is happening with that review, either.  Hmmm....I need to get on the ball!

Lastly, the Race for Research for the MMRF will be on April 27th this year.  That is just 2 months away and, unfortunately, the website is not up and running yet.  More than that, the race was just in September and now it is in April.  I feel like I've just asked friends and family for donations and now I will be asking again.  It's a little awkward and uncomfortable.  My understanding is that in the past the race was typically run in the spring but construction in and around the area required the MMRF to move the race to September.  Now the City of Boston is requiring the race be moved back to the spring.  And only 2 weeks after the Boston Marathon where there will be an MMRF Power Team.  I wish it weren't so, but it is what it is.  I'll be notifying my team soon so we can start our work.

One thing that may help us in our efforts is that I will be this year's recipient of the Spirit of Hope Award.  I'm not sure what that means (again! - boy, I really need to get on the ball!)  This is what the MMRF website says:

"The MMRF Spirit of Hope Award is given at every Race for Research 5K event to individuals who inspire hope with their perseverance in overcoming personal obstacles such as a cancer diagnosis."

So Team Multiple Miracles will rise again to the occasion!  The award truly belongs to all of us.

From the big snow storm - a lot of snow!
Today's snow

Sunday, January 27, 2013

I'm embarrassed

Yes, I am embarrassed.  It's been 2 months since my last entry and I have....wait a minute!  This is starting to sound like I'm in a confessional at church!!

Seriously, though, it has been a long time since I've written and I have no good excuse except that life has gotten busy.  Thanksgiving, Christmas, New Year's, followed by a family vacation in Hawaii (our 'foreign exchange son' Ondra joining us all the way from Vienna, Austria), and here I am today, in front of my computer, writing away at long last.  Where to start?

I guess first on the list is my health.  It is good :-)  My labs continue to show a strong remission.  My white blood cells are lagging a little, but that seems to be my holding pattern.  The same with my ANC.  But the red blood cells and my platelets (finally!) are normal, normal, normal!  I am continuing with acupuncture and finding relief in it.  I have a little foot pain, not directly from the Revlimid (but surely indirectly) but from the flip-flops I wore in the summer and recently in Hawaii.  I recall thinking those sandals were the cause of my foot troubles in the summer and I confirmed that in Hawaii.  Needless to say, I tossed them when I got home but I think I'll be off to see the podiatrist soon.

Hmmm...this is sounding a bit boring.  Is that what happens when one feels healthy again??  No more talk about trips to the hospital and that pocketbook that saved me so many times; no more talk about a tingly face; no more talk about transfusions.  Was that all really a part of my life?  Some days it is hard to believe, though there are times when I realize how much life I missed.  We have our annual Super Bowl party coming up next Sunday and I was reminded that we didn't host it last year because I was just 4 months post-stem cell transplant.  I had forgotten about not having the party.

More often I am recalling the 'year that I missed.'  Or perhaps it should be 'the year that I've forgotten.'  Or 'the year that happened while I was otherwise occupied.'  In some ways, it doesn't matter because I am here today - healthy, active (albeit slower than ever), and in remission.  I am committed to doing whatever I can with the MMRF to find a cure for multiple myeloma.  (Team Multiple Miracles, are you getting ready for September??)  But I can no longer spend my days wondering about 'the year that I missed' - I missed a year due to illness and I don't want to miss anymore time fretting about that year.

Last day in Hawaii - a farewell hula with the statue!

Saturday, November 17, 2012

I'm a believer...and other such stuff

I admit it.  When I first started acupuncture so many months ago, I was skeptical.  I think I proclaimed that here in my blog.  After several months of acupuncture, though, I felt pretty good.  The hot flashes were greatly diminished, the hand and foot pain from the Revlimid were gone, and I was sleeping better.  Dr. Li had told me that acupuncture had an enduring effect, so after a few months I stopped treatment.  That was about 3 months ago.  I think I may still have been a bit skeptical.

In recent weeks (and I think probably longer), the hot flashes returned with ferocity!  And, of course, that resulted in disturbed sleep.  The worst part - the hand and feet pain returned.  I was feeling a bit miserable, so I decided to return to acupuncture.  The problem was my commute to Boston and Dana-Farber for the treatment.  It is a tiring commute over an extended period of time.  I fussed a bit about finding a new acupuncturist in NH - I am still very cautious about my not-fully-recovered immune system - but a friend had spoken so highly of her acupuncturist that I decided to meet with her.

I still can't get my head fully around how acupuncture works, but I am now a believer in it - wholeheartedly!  After one treatment - just one! - the pain is 99% gone and I am actually feeling a little chilly at night instead of roasting.  I guess the treatments picked up where they left off.  It is truly amazing to me!  I go back for another session on Tuesday, so I hope to gain a better understanding of how this turnaround in temperature and pain happened.  I can tell you that I feel so much better!

In the 'other such stuff' category:  I was a Dana-Farber this week for another follow up.  Still in remission and my M-spike (a protein....complicated to explain and to understand) is 0.  All good news!  The downside was that I was getting 4 additional immunizations and a flu shot.  I'm not a baby about receiving shots, having had diabetes for all these years.  But this nurse injected my arms (2 shots in one arm, 3 in the other) so far up on the shoulders that within a few hours I struggled to lift either arm.  My shoulders really hurt.  A few tylenol and a warm lavender blanket wrapped around me was the prescription for the evening.  Two days later my shoulders are still a bit tender.

More news - I'm working with another nutritionist and those high calorie shakes are out the window, as are a few of the supplements I was taking.  May I see a reduction in weight in the near future.  Oh! - I forgot - Thanksgiving is this week - hmmmm...ok, weight loss next week :-)

Lastly, the good Dr. A. removed a few meds that had originally been prescribed.  It's nice to have fewer pills to swallow each day!

Enjoy the weekend!