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!

Monday, October 29, 2012

The "S" word

Actually, the "S" words!  Here we go:

S is for skeletal survey.  A skeletal survey is a series of x-rays from the head to the ankles. Images are taken of the skull, spine, ribs, arms, hips, and legs - just about every bone except for those in the hands and feet.  The skeletal survey is taken because myeloma can cause lesions - holes - in the skull and bones.  My second skeletal survey results have come in and they're the same as the first survey - no holes :-) I am so fortunate.  Often myeloma presents itself through bone pain and the bone pain is what can lead to the myeloma diagnosis.  While I've had sore feet and sore hands, I've never had bone pain.  So fortunate!

It goes downhill from here....

S is for the snatched scarf.  The MMRF Gala and auction was this past Saturday.  While we did not attend the Gala, I decided to bid on a few items.  I was outbid on all but the linen and cotton scarf....or so it seemed.  Even though my name was listed as the winner, apparently I didn't win.  A previous high bidder snatched it away from me and won.  Hmmmm.  Not quite sure how that worked, but I do know the scarf isn't mine :-(  Now that was disappointing!  Anyway, the baseball.  I bid on an autographed baseball for Sarah.  Who knew a baseball autographed by Dustin Pedroia would sell for $560???  Not me!  Glad I stopped bidding a lot earlier than that high bid.  And did you have a chance to check out the other items?  The tickets to the Grammy Awards went for $27,000! And the trip to Jamaica to stay in Ian Fleming's home went for $22,000!  Wow!!  With bids like that, I can see how the MMRF raises $2 million at the Gala!  All good funding for research.  I look forward to seeing the photos from the evening.  I'm sure the MMRF website will have the photos soon.

S is for shake.  As in my morning green shake.  Well, you all know how enthralled I have been with my VitaMix blender and how I have experimented with making green shakes.  Some have been delicious, others have been not so delicious.  Actually, some have been not drinkable.  I've finally found a recipe that I like - frozen banana, apple, and spinach as the main ingredients.  Last week, I was telling a colleague about the ingredients in my healthy shake.  She commented, "sounds like a lot of calories." Really?  I decided I would figure out the caloric intake of my breakfast.  Here is what I discovered:

1 medium banana          110 calories
1 medium apple               80
1 cup spinach                    7
1 serving tofu                120
(this is starting to not look good)
2 T protein powder        120
2 T flax seeds                  80
(now I'm scared!)
1 T twin omega oil         120
1 t. fish oil                        45

S is for shake shock!  That's 682 calories!!!  Just for breakfast!!  Who knew???  No wonder I am gaining weight!!  I had no idea.  I was thinking maybe 400 calories.  And to be honest, my early morning measuring skills can be a bit less than accurate and I don't mean on the low side.  Oh my gosh!  One fried egg with one strip of bacon (seriously - who can eat just one strip of bacon?) is only 136 calories!  Not as healthy as my super green shake, of course, but 500 fewer calories.  (and I do so love eggs and bacon)  Sheesh!  Obviously I need a new plan.  Any and all suggestions welcome!

And last but not least...

S is for Sandy.  The hurricane is just about here.  It's raining, it's windy.  It's not much more than a rain storm right now, but the meteorologists are calling for winds of over 60mph, heavy rain, and flooding.  I kind of like a good storm, but I hope we are not without power for....well, I hope we are not without power (but actually I don't mind that so much, at least for a short time, but my family feels quite differently).

But now that I think of it, if we are without electricity, I won't be able to power up the VitaMix. The gas stove, however, is ready and waiting to cook up some eggs and bacon :-)  There is always a bright side, isn't there?  :-)


Thursday, October 18, 2012

MMRF Gala

This year's MMRF Fall Gala will be held on October 27th at the Hyatt Regency in Greenwich, CT.  It will feature special performances by Jennifer Hudson and Earth, Wind & Fire.  The tickets start at $500 and much to my surprise it is sold out.  I think this is a very big fundraiser for the MMRF!  In case you, like me, will not be there, there is a silent auction and the bidding is open.  There are some pretty nice items!  Check it out at the Fall Gala Auction.  You just might find something you like!  And it's all for a good cause :-)

Skeletal survey tomorrow!  And this week's labs came back terrific!  Yeah, the platelets and white blood cells are still a bit low, but even the doctors have recognized this as 'just me.'

Sunday, October 14, 2012

Hiking in the White Mountains

Last weekend - Columbus Day weekend - I was fortunate to take a trip north to the White Mountains for my very first back-to-the-Whites hike!  It was a little hike - very little! - at only 3 miles round trip.  And it wasn't a very high mountain - not even a 3000 footer.  None of that mattered, though.  I was back in the Whites!  It felt great to be hiking uphill with a backpack.  I hope you'll enjoy these photos, some which were taken atop the summit.  Oh - forgot to mention - the summit across the way was covered in snow - already!









As promised - Team Multiple Miracles!


Wednesday, October 3, 2012

Race for Research results!


Race Day has come and gone and I have some of the results to share with you.  Not all results are in, as the MMRF has had several races back to back and they are still tabulating.  Here's what we have thus far:

Carson Beach Race:  $310,423.17 in donations received to date.  The goal for the race is $355,000 and donations continue to come in.  More than 80 teams were registered, with 1500 participants braving the early morning rain.

Team Multiple Miracles:  Our tally at this point is $13, 895.  I know they have another $500 to add to that and a few additional donations have come in.  It is amazing to me!  When my good friend Joan suggested we set a goal of $10,000, I was a bit concerned.  Actually, I was flabbergasted!   How were we ever going to raise that amount??  Wow - was I surprised!

Team Results:  
Team Multiple Miracles came in 3rd place for donations.  That's another 'wow' for me - that's a lot of donations!  Big Mike Brody's team came in at $17,467, while Jeff's Juggernaut's received $16,706 in donations.

First Team Multiple Miracles runner to cross the finish line:  Michael Poor, with a time of 23:24!  Mike was #71 overall.  Congrats!!!

Last Team Multiple Miracles runner to cross the finish line:  well I do believe that was my daughter Sarah and her friend (and our logo designer!) Josh at 1:03 - but they were walking :-)  I came in as racer #524 of 549.  Oh boy.  Can I say that I was running and walking to the front of the group and to the back of the group to see everyone??  Does that explain my being #524??  Ok, ok, enough said.  I get it.  Next year, I'll be #.....I don't know but I certainly won't be #524 :-)  

One last (and surprising!) note:  the MMRF presented me with the Spirit of Giving award.  Yet another 'wow'!  I was truly humbled and honored.  I have much for which to be thankful and grateful.

Beyond the race, I'd like to share my continued good health news.  I remain in remission and on a one-drug therapy!  Woo-hoo! I feel energetic and just about like 'my old self.'  I hope to soon find myself hiking again - not the big mountains (yet) but in my hiking boots, wearing a backpack, heading up a trail in the White Mountains, even if it's a little trail.  My white blood count and platelets continue to rebel, insisting upon remaining at the 'new normal' level of low, but they are not low enough to require more than a little extra caution.  (no gashes on the hiking trail!)  My oncologists have told me that I need to visit them only every 3 months.   Hmmm....that doesn't quite work for me.  I've been through a lot in a year and I'm not ready to....well, I'm just not ready.  It was agreed that I'll see my NH oncologist every 6 weeks until the end of the year and my Dana-Farber oncologist every 3 months.  Lab work every month and a skeletal survey in 2 weeks - that's my health plan.

Still hard to believe how very, very sick I was just 12 months ago....I am blessed to be so healthy and in remission now.
 
Our logo above and the back of my shirt with the sleeve in memory of my friends who are gone, and the back in thanks to my new multiple myeloma friends who support me every day.


 Team photo coming soon!

Saturday, August 25, 2012

A belated happy anniversary!

It's been a year since my stem cell transplant and I'm in remission!!!  I put together this little video to express my thoughts.  It's not the best quality and I seem a bit too serious and the lighting is pretty bad.  My son the film student will be upset that I did this on my iPad without him.  Sorry, Joseph!!!!  I should have asked for help!


Thursday, August 16, 2012

Has it been one year already?

Well, almost.  August 23rd is the actual one year anniversary of my stem cell transplant. But on this day last year, I was at the Kraft Family Blood Donor Center for the second day of stem cell collection.  Today, I was at Dana-Farber for my childhood immunizations. I had 5 in all:

  • DTaP
  • Hepatitis A
  • Hepatitis B
  • Hib
  • Meningococcal
  • Pneumococcal

Now that's 6 but it came in 5 shots - 2 in one arm, 3 in the other.  Ouch, ouch, ouch - my arms are very sore:-(  However, since they are not live vaccines, I won't suffer through the flu-ish symptoms that often accompany vaccinations.

Other news from my visit with Dr. A:  no news is good news!  My myeloma remains quiet and I remain in remission, thanks be!  My white blood cells and my platelets continue to hover on the low side but this seems to be a part of my 'new normal.'  Next month - my Zometa infusion, but I am done with the pantamidine, and will soon be done with the acyclovir and folic acid.  It will be good to be taking fewer pills every day!

On a different note, Team Multiple Miracles has surpassed its goal of $10, 000!  We are at $10, 385 and the donations continue to arrive.  The love, support, and generosity are truly overwhelming.  My family and I feel blessed and so fortunate to have such an outpouring from our family, friends, and colleagues.  I know the funds raised for the MMRF will be well-spent, as 90% of all donations to the MMRF go directly to research. Someday, before we go over the rainbow, there will be a cure!

Saturday, August 11, 2012

Update on Team Multiple Miracles

Last Friday, I wrote that Team Multiple Miracles had raised $2,925.  A week and a day later, we are at $9,370!!!  What a week!  Such amazing generosity from a diverse group of friends and colleagues!  At this rate, we will not only meet our goal but surpass it.  It's wonderful for those of us with multiple myeloma.  If every team in all of the Race for Research events around the country meets its goal, so much good research will be funded by the MMRF and the chances of our living longer and healthier lives improves.

I am so grateful to everyone who has contributed and who has prayed for us in the multiple myeloma community!

 Team Multiple Miracles

Friday, August 3, 2012

BC+D may help others

Today I was interviewed by a writer for Diabetes Forecast, the magazine of the American Diabetes Association.  She is writing an article on diabetes and cancer.  In doing an internet search, she found my blog, tracked me down, and arranged a time for us to talk.  We did so today and the article is scheduled to appear in the October issue.  Whether my story or BC+D will appear in the article is not clear, but it will be an interesting article to read.  I'll be sure to share a link to the article here.

Update on Team Multiple Miracles:  We now have 18 team members and have raised $2,925!  Still lots of time to support us at Team Multiple Miracles

Have a great weekend!



Wednesday, July 25, 2012

What would you do for a Klondike bar?

Me personally, nothing.  I'm not a fan.  However, what would I do for bacon and eggs?  Just about anything right now!  Oh the morning shakes!  My oh my.  I truly do enjoy the green shakes I've been making every morning.  They leave me feeling satisfied, full and healthy -  and they keep my blood sugar stable all morning.  And often when noon rolls around, I'm not really hungry - unless I'm stressed, but that's a different kind of eating altogether.

This past week, though, I think I've experimented a little too much with the shake recipe.  Actually, I don't have a recipe - I tend to open the fridge and throw whatever I can find into my nice new blender, though I most always include a frozen banana (no rhyme or reason to that one).  This morning, I started with carrots, fresh from the farm, and then added a gala apple, a little ginger, a little kale, a non-frozen banana (why??), a serving of tofu, some flax seed and flax oil.  Yes, it tasted just as you're imagining it would taste - nasty! :-(  It gives me the heebie-jeebies just thinking about it!

But I drank it, at least most of it, because there were 4 servings of fruits and vegetables in that one way-too-big container of way-too-much morning shake.  The rest awaits me in the fridge. (heebie-jeebies)  I've got to start using the recipes in that green smoothies book I bought!

Bacon and eggs, french toast, pancakes with maple syrup...I miss you!  This weekend we must be reunited, if only for a day....and not in a shake.

Update on Team Multiple Miracles:  we have 16 team members and have raised $1935 thus far!  Visit us at Team Multiple Miracles to join, donate, or be with us in spirit and hope!

Thursday, July 19, 2012

Team Multiple Miracles

Each year  The Multiple Myeloma Research Foundation hosts a number of events around the country to raise funds for research. Coming to a location near me is Race for the Research 5K at Carson Beach in Boston.

These photos are from last year's Carson Beach Race.  I was about 3 weeks post-stem cell transplant and still pretty out of it when I heard a beep-beep-beep on my phone.  Who was texting me?  Who was sending me photos?  Well it was none other than my good friend Joan.  She, her daughter Samantha, and her grandson Christopher all were at the Race for the Research and getting ready to run and walk!  I remember thinking, "Wow!  I want to be there with them!"  I was so touched by their kindess.  And it inspired me to work a little harder toward recovery.




That was then, this is now.  Joan, Samantha, and Christopher are ready to take on the Race for the Research again this year.  This time, I'm joining them - and so are a lot of other folks who joined my team, Team Multiple Miracles.  It's a fitting team name, don't you think?  I believe it is.  Just look at my journey (in appearances) since late 2010:














At the Patriots Game in 2010 with Sarah











In the hospital with Joseph, just a day before that awful Melphalan pre-stem cell transplant prep!











One month post-transplant with my sisters.  Bald, bald, bald.













June 2012 - lots of hair, lots of curls, lots of frizz!









I never did take a picture with my gray tight, tight curls.  I think that is just as well :-)  Next photo of me will be at the Race for the Research in the Winner's Circle!  I've come a very long way in a short time.

Now on to business.  If you've followed my blog and followed the blogs of others who follow my blog, you've got a good sense of what it's like to have multiple myeloma.  It's not so much fun during the diagnosis and treatment.  Some of us are blessed to have had a fantastic outcome post-stem cell transplant.  I count myself in that group, thus the name Team Multiple Miracles.  But miracles sometimes need our help and that's where I'm calling on you.  Join my team or contribute to my team!  With the MMRF, 90 % of all contributions go directly to research.  That's right - the MMRF is one of the most fiscally responsible non-profit organization out there.  And in the past 4 years, they contributed to the FDA approval of 4 myeloma therapies.  That's pretty amazing.

Those treatment therapies have certainly extended the lifespan for those of us with multiple myeloma, but we're not cured and right now it's pretty much a guarantee that those of us in remission will not stay in remission.  We need multiple miracles and now Multiple Miracles needs you.  Every small donation helps.

And, by the way, the research outcomes from the MM studies support the progress in therapies for 30 other cancers.  Now that's worth racing for.

To support us, go to Team Multiple Miracles  Thank you for your support in the race and throughout my journey.  I am grateful.


Friday, July 13, 2012

Not so fast

In my last blog entry, I wrote about the virtues of acupuncture. Lots more energy, no more hot flashes, no more sleepless nights! Yay!

Now, I am realizing, I may need to eat my words. This past week: hot flashes, most of the day and night, and intense hot flashes at that. Sleeping soundly at night - fugetaboutit!  But my energy - wow!  Has it ever returned!  Lots of energy and a strong feeling of physical well-being.  Yesterday I returned for another acupuncture session and I was full of complaints about the hot flashes and the sleeplessness.  Here's the conversation I had with the doctor:

Dr. Li:  Wow, Susan.  Have you been to the beach?  You look so tanned.
Me:  Yes.  Yes, I did get to the beach one day.  I do seem to tan quickly, despite the big hat and the suntan lotion.
Dr. Li:  And what have you been doing for exercise?
Me:  Well, I started back at Bikram yoga, the 90 minute yoga in a room set to 105 degrees.

Now in the field of education, we call this a 'teachable moment' and, boy, did I just hand him a teachable moment on a silver platter!

Dr. Li:  Let me tell you a little more about Chinese medicine.
Me: (You walked right into this one, Susan.  Yes, you did.)
Dr. Li:  Chinese medicine isn't just about these small needles.  It's about the environment, the internal and external environment.  You've heard of Feng Shui?  It's also about the environment.  Your internal environment is on fire, so why are you putting yourself in outside environments that are very hot?  It only makes you more hot.
Me: (Do I really have a Master's degree, because right now I feel like a dope.)
Dr. Li:  The body takes a long time to cool down.

Ok, do I give up Bikram?  No, don't make me do that!!  I guess that means Bikram in the morning, so I have all day to cool down.  Right?

And the beach?  Give that up???  I call that cruel and unusual punishment!!  And cruel and unusual punishment is illegal and I certainly wouldn't want Dr. Li to be involved in anything illegal.  (Aren't I just full of rationalizations?)  Well, it's really a moot point anyway.  Summers are short here in NH - though this summer is exceptionally hot! - and my beach days are few and far-between.  I'll don my hat and buy myself an umbrella and stick my feet in the icy waters of NH and Maine and be happy at the beach.

And, of course, suffer at night.

What's a post-stem cell transplant menopausal woman to do??  (Yes, I can hear what you all are thinking - 'you can suffer in silence, Susan!')  :-)

Ok, no more complaining - at least not in this blog and not in the next.  Coming in the next blog:  the Multiple Myeloma Research Foundation's Race for the Research.  And how is this for a team name - Team Multiple Miracles?  Yes, that's my team and we'll be running and walking on September 15th at Carson Beach in Boston.  I'll be recruiting you in the next blog entry, so be sure to read it.  Don't make me track you down!





Tuesday, July 3, 2012

Happy July!

I can hardly believe it's been about a month since my last blog!  Where has the time gone??  I apologize for being so neglectful and I hope to be less so in the future.

Anyway....I've had several acupuncture sessions now and I am happy to report that my energy is high, my sleeping is improved, and my hot flashes are less frequent and less intense than they had been. All that and I continue to remain myeloma-free on my maintenance dose of Revlimid :-)  I am one happy camper!

On the nutrition front:  I've eliminated the yogurt and added tofu to my morning shakes.  I haven't had the courage to try tofu in any other way, despite the tofu cookbook I purchased (that is still sitting on my coffee table, unopened) (but the cover of the cookbook is so attractive!), but it is masked in my shakes and helps to keep my blood sugar stabilized throughout the morning.

Speaking of shakes, I've been experimenting.  For Mother's Day, my family bought me a Breville juicer.  It was a pretty big machine in my kitchen.  Notice the was.  It lasted a few weeks but it really wasn't what I wanted.  It made delicious juice but so much of the pulp was expelled during the juicing that it took an awful lot of veggies and fruit to make a small cup of juice.  Thankfully, Williams-Sonoma has a generous return policy, so back it went.  Sitting now on my counter, awaiting its first spin, is a Vitamix machine.  It is much smaller than the juicer and looks more like a big blender.  If anyone watches the Food Network show Chopped, it's the blender the chefs use.  Joe set it up for me today.  I'm a little intimidated by it (it came with a Getting Started dvd!), as I was with the juicer, but I think it's more of what I want.  I've been using my 30+ year old blender every morning and every morning it's a process to get one little shake.  So much starting and stopping and pushing everything down to the bottom, and then starting the process over again...and again.  This shouldn't be the case with the Vitamix.  I guess I'll find out tomorrow.

And honestly, a shake with fruit and veggies is really quite delicious!  Now don't try to confirm that with my family - their opinions differ :-)

Wishing you a happy 4th of July celebration!

Wednesday, June 6, 2012

My nutrition consult

Yesterday was a big day in Boston for me!  I started with a haircut.  My hair provides continual amusement for my hair stylist.  She is always amazed at how thick and curly and frizzy it is.  And when she cut it - it was like thick, dense patches of rug falling from my scalp.  We were both amazed.  Now I know the curls are still there, but when Sydney dries my hair, she can get every curl to disappear so that I have straight hair.  I never had straight hair, but I did yesterday and today!  Tomorrow, I think I'll be returning back to curls.  I did buy a lot of product, though, so maybe, maybe the curls and frizz will stay under control.

Next stop:  Zakim Center for Integrative Medicine at Dana-Farber for acupuncture, round 2.  It's such an interesting experience.  How can all of those tiny needles not hurt?  How can I not feel them?  I don't know, but they don't hurt and I don't feel them.  Has acupuncture reduced my hot flashes?  It's hard to say.  I've had only 2 sessions.  Still, I did have several days and nights without hot flashes.  On two nights I even had to put an extra blanket on the bed at night.  But some days and nights, it feels like a furnace has been turned on inside me.  I'd gotten into the habit of keeping a fan blowing on me all night.  So now that I've had a second treatment, perhaps I'll continue to cool down.

Last stop:  nutrition consult.  Oh boy, did I learn a lot!  I haven't fully digested it yet, no pun intended!  I did, though, walk away with several recipes for highly nutritious mornings shakes.  I thought I followed one of the recipes this morning but I think something went wrong.  I mixed Chobani Pomegranate yogurt with a cup of blueberries, a little water, some vanilla protein powder, ground flax seeds, and twin omega oil.  I whipped it all up in the blender, and voila! - my morning shake was ready!  I took a few sips - it was a bit tart but still good.  I set it aside and ran upstairs for a bit, I'm not sure how long but it must have been more than a few minutes.  When I came downstairs for another sip, the shake wouldn't pour from my cup.  I looked in the cup and, lo and behold, the shake had congealed!  I stuck my spoon in it and the spoon stood up straight!  What had I done???  I stirred up the shake - now it was in chunks.  Still not drinkable.  I really don't know where I went wrong with this recipe.  What would have made it congeal?  I don't know but at the end of the day, after the blender soaked for the day, there was still some 'shake' stuck to the side of the blender.  Hmmm.  I guess I need to go back to square one with this recipe.

Next recipe to try:  carrot, green apple, and ginger in the juicer.  Another culinary adventure!

Tuesday, May 15, 2012

Acupuncture

One of the effects of chemo last spring was being catapulted into menopause. I haven't thought much about it until recently when the hot flashes have intensified. They have been so severe that I've very often been unable to sleep. The hot flashes keep me from sleep, the lack of sleep interferes with my recovery, causes increased neuropathy in my hands and feet, and leads me to over eat during the day to keep up the energy in my tired body, and the increased eating helps to fuel the fire that supports the hot flashes - quite a cycle, huh? I tried Ativan and Ambien as sleep aids. Both worked well keeping me asleep and both worked well keeping me in a daze the following day. I tried HRT for one month. Hot flashes were gone in a week, but do I really want to worry about the possibility of another cancer? Not really. So on to the next option: acupuncture.

Today was my first session. After much conversation, Dr.Li at Dana Farber suggested one treatment each week for the next 2 months. So I'll be traveling to Boston over the summer. It's a nice time of year to be in Boston!

For my first session, I felt very relaxed. In all, 16 teeny tiny acupuncture needles were placed on my ankles, calves, wrists, forearms, neck, ears and scalp. I felt only one. I rested for 30 minutes, during which time I was chilly but relaxed. I feel relaxed tonight, too. I'm not sure if it was the acupuncture or if it is tiredness catching up, but I think I'll sleep tonight.

More on my acupuncture adventures in the weeks to come!

Friday, May 11, 2012

Lenny Zakim

I must apologize for being so very delinquent in posting!  I cannot believe it has been so long!  I am sorry!  Time just got away from me.  A friend recently said, "are you making up for lost time?"  I guess I am!

And now on to Lenny Zakim.

Some of you will recognize the name as being associated with the 'new bridge' in Boston - the Zakim bridge.  It's a nice looking bridge, especially at night.



Lenny Zakim was a bridge builder, not in the sense of being a bridge designer or a construction worker.  No, he built bridges amongst people and within communities.  He worked to find connections between people of different faiths, ethnicities, and social and economic backgrounds.  He was the Executive Director of the New England chapter of the Anti-Defamation League.  Civil rights was his passion and he worked tirelessly for social justice for all.

And he had multiple myeloma.  (and you can guess who his doctor was)

He died in 1999, just 5 years after being diagnosed.  During the myeloma part of his life, he insisted that people living with cancer must be active participants in their health care.  What could people with cancer do to create and maintain their own good health?  He wanted people of all backgrounds to have access to therapies that would give them comfort, renew their spirits, and support their physical recovery.  Thus, just before his death, he announced the establishment of the Zakim Center for Integrative Therapies at Dana Farber.  The Center opened a year later.

The Zakim Center offers a variety of complementary therapies that have been supported through evidence-based clinical research.  Acupuncture, Qi-Gong, reiki, nutrition, creative arts - those are just a few of the therapies currently available.  Starting next week, I'll be participating in some of these therapies, notably acupuncture and nutritional counseling, to support my continued good health.

And yes, my health is good!  My myeloma tests continue to show enduring stability since my stem cell transplant.  I feel well and I've finally settled in with my new medication routine - a cycle of 7 days on and 7 days off of Revlimid.  That seems to be a good regimin for me. I'll have more myeloma test results late next week, but the good Dr. A seems to think it will be more of the same good news.

I've been fortunate to find a medication protocol that works well.  It was a struggle to get here, but I think I'm settled.  My side effects are relatively mild.  My WBC still struggles to be at the normal level, but now it is just low, and not neutropenically low as it had been in January and February...and part of March.  And my platelets must get cranky if they get within the normal range, so I guess they are going to stay somewhat low, too.  I do get occasional unexplained bruises and sometimes my hands and feet are a bit swollen and tender, but hey - the myeloma cells are out of sight, so I'll welcome the bruises and the swelling any day!

As for my hair, well, it continues to be a...hmm...an interesting journey.  This time last year, I had that nice wavy brown hair.  Remember that?  Yes, it was colored but underneath there were only a few gray hairs.  Ok, maybe there were more than a few, but definitely not a headful.  Really.  And then in August I was bald.  You know, I didn't really realize just how bald I was.  I mean, I thought I had fuzz on the top of my head, but no.  I was bald!  But then I got the fuzz :-)  And then I got hair.  And then I got curls, which became kinky tight curls that were black and really gray.  And as my hair grew, the curls became tighter and I surely looked like I belonged back in the 70s.  Anyway, you know that I then colored my hair and cut it but the curls persisted.  Until the last hair cut:  the curls now have loosened, so that I don't have those tight kinky curls.  Nope, no kinky curls for me.  Now I have frizz.  Loose frizz on most of my head, especially the top which is so thick.  The sides are starting to play nicely and are settling down to some waviness, without frizz.  Are you getting the picture of what my hair looks like???  Scary!  Oh, lest I forget - the color is fading and yes indeed, the gray is bursting through, shouting "Susan, I'm back!"

BUT...no myeloma cells :-)  So I'll shout "Welcome, bruises, swelling, and frizz!"

Happy Mother's Day to all the fabulous women in my life!  I love you all!!

Thursday, March 22, 2012

Today's the day to begin anew

Yes, it is.  One year ago today, I spent the morning at the oncologist with the bad health news being delivered.  "It's worse than I originally thought.  I was hoping you had a form of anemia, but it isn't anemia.  You have Multiple Myeloma."  Joe and I sat there quietly at first and then Joe said he didn't know what MM was.  I did not know either but somehow I knew it was cancer.

Dr. Sims walked us step by step through the definition of MM, the different types, the treatment options, how he would prefer to proceed with me.  I heard some of what he said, but mostly his conversation was hovering out there all around me, not much sinking in.  I had one and only one question on my mind and I finally found the courage to ask it - "how long do I have to live?"  His response - "In the past it is been about 3 - 5 years, but there are so many new treatments and people are living much longer that it's difficult to keep on top of the data.  It's changing rapidly."  Somehow I felt relieved.  Then he noted, "We can start treatment in a few weeks.  I'm in this office on Tuesdays, so I'd start your treatment on a Tuesday.  Let this news settle in for a bit and then we can talk about starting treatment."  "No, thank you.  I'll start next Tuesday."

It's a bit of a blur thereafter.  I can't remember how I told our kids or how I told my sisters or my loved ones or my friends.  I remember Skyping my parents to tell them.  I was beating around the bush and my father came right out and said, "You have cancer.  Is that what you're trying to say?"  It was out and they were strong.  Actually so many people have been strong for me this past year.  I am truly grateful.  As it says on the homepage of my blog, it is the support and love of those around me that help me to stand up again every time I fall.

I admit to falling down recently.  As I've approached this 'anniversary' I've found myself wondering about my identity.  Who am I now?  I'm not the old Susan.  The old Susan didn't have sore and swollen hands and feet; she didn't worry about every ache and pain (though maybe she should have); she didn't take 10+ pills a day; she hiked; she worked out at the gym; she certainly didn't have this out of control hair!

Well, I did something about the hair.  A cut and color has made me look more like the old Susan, despite the continued curls and frizz (and the color is a little dark).  I guess that is a step forward.

Beyond that, I'm still in exploring mode.  What can I do to continue to heal this body?  What can I do for activity during the healing process?  How do I manage the daily annoyances of my feet and hands?  Will I ever get back to hiking those big White Mountains?  Those and other thoughts and questions fill my head these days.  I have spent much time in reflection.

But today is the day, the anniversary, the time to begin anew.  Here in NH it is an unseasonably bright and glorious day!  The temperature should be only in the 40s and 50s, but it will be mid 80s today.  I think it is a great day to slowly, slowly, very slowly begin to stand up.

Wednesday, March 14, 2012

March Anniversaries

Tomorrow is March 15th, the Ides of March.  In history, the Ides of March is best remembered in the play Julius Caesar by William Shakespeare.  In the play, the soothsayer - a fortune teller - warned Caesar to beware the Ides of March for it would be an ill-fated day.  And you may recall that indeed it was, as Caesar was stabbed to death by members of the Roman senate.

Jump ahead hundreds of year to March 15, 2011.  No soothsayers around that I could see and yet it turned out to be an ill-fated day for me.

On the morning of March 15th, I dragged my very tired body to a doctor's appointment.  I was greeted by a nurse who said, "You look awful!"  The doctor followed and said, "You look like you have jaundice."  Hmmm.  I wasn't wearing make-up and my vacation tan had faded, but did I really look that bad???  I obviously hadn't noticed.  After blood tests and an exam, I was sent home to await the results.  The call came at the end of the day - "It's not good news. Your blood counts are extremely low.  You need to go immediately to the ER.  They're waiting to give you a transfusion.  You need this transfusion."

I wish I could recall what I was thinking, but so much has occurred in a year's time that I just can't recall every detail.  I do remember going to the ER with Joe, and my sister Cindy arrived soon thereafter.  They sat with me as the transfusion began and stayed with me for hours.  As it was decided that I would be staying overnight and having another transfusion, Cindy left and I was brought up to my room.

And that was the beginning of my new life.  Yes, oh yes, beware the Ides of March.

Speed up a week - March 22nd - I was diagnosed with Multiple Myeloma.

Speed up another week - March 29th - I had my first chemo treatment.

As I've drawn closer to March 15, 2012, I've spent a fair amount of time reflecting on this past year.  I can hardly believe where the journey has taken me this year.  How many days and weeks did I go to the oncologist, snuggle into a recliner, cover myself with an afghan, and have Velcade and Dexamethasone pumped into me?  How did I manage living with a picc line, a port, a hickman line?  How did I get through the Cytoxan and the Melphalan?  How did I deal with the numb face, the sore and swollen hands and feet, the hair loss?

And the stem cell transplant.  The significant post-transplant restrictions.  The mask and gloves. The memory impairment.

I look in the mirror each morning and I'm reminded of how difficult the year was.  "Who is that woman looking back at me with the very curly black and very gray hair?  She looks so old."

I've been through a lot in a year.  I've been through a lot.

I try to hold on to what a fellow Multiple Myeloma blogger quotes in his blog:

"..I have learned to be content whatever the circumstances. I know what it
is to be in need, and I know what it is to have plenty. I have learned the
secret of being content in any and every situation, whether well fed or
hungry, whether living in plenty or in want. I can do everything through
Him who gives me strength." Phil 4:11-13

I recognized this in the woman reflected in the mirror with the very curly black and very gray hair who looks so old.  She is strong.


Wednesday, February 15, 2012

Hibernation

I've made it a whole month without antibiotics!  Woo-hoo!  Having been on antibiotics almost 40 days (starting on December 20th), I'm greatly relieved to be healthy - or healthier - again.  Of course, part of being more healthy is due to my hibernating.  With few exceptions, I didn't leave the house for most of January.  I'm trying to avoid whatever germs are floating around out in the real world.  And on the few very nice days we've had here in NH, I shut off the heat and opened my doors and windows to air out the house - can't have germs floating around inside either.

Part of my hibernation, too, has been due to the several lab results in January showing that my white blood cell count was low.  All of my other labs have been good, but the WBC count just was low.  Ok, I thought, that was not unexpected. I'd been sick for a long time, had just completed a full 21 day cycle of Revlimid, and I do take a bit longer to rebound from Revlimid - of course my WBC would be low!  But I was surprised that my count was low enough to be considered 'moderately neutropenic' and 'come back in 3 days for another round of labs.'  And then on that 3rd day, 'come back for another round of labs next week', followed by 'let's wait another week to start back on Revlimid'.

So while I was told to continue avoiding any source of illness, I decided to also go back on a modified neutropenic diet - no fresh fruits, no raw veggies, no nuts, no yogurt, all foods cooked very well, for the time being.  And the hibernation continues!  I'm trying to do whatever I can, within reason (which is hard to define), to avoid infection and illness.

Still, I feel well, really well.  It's good to be without that awful, nagging upper respiratory illness.  I was sick for so long.

Today I went down to Dana-Farber for my regular every-3-month appointment.  It was a frustrating day. Somehow, my appointment was never entered in the DF calendar (even though it was confirmed just yesterday), so there were no lab orders.  Then Dr. A. found that my NH oncologist had not sent any of my reports to him since the beginning of December.  There was no record of my illness, my trip to the ER, the low blood counts.  Nothing.  So there was not much to talk about in terms of me specifically.  It the end, I had labs before I left Boston and will know the results tomorrow (I hope).  Looking forward to  good news about my WBC count!

Saturday, January 7, 2012

An antibiotic kind of winter?

It seems so.  It is only the first week of the year and already I'm on antibiotics.  Mind you, I was on an antibiotic from December 21 - 30.  I felt really good by the 30th but....that didn't last long.  I can't help but believe the weather plays some part in this:  on January 1st, it was a beautiful, sunny day of 50 degrees; a few days later, it was 6 degrees when I woke up.

I wonder, too, if I've had too cavalier an attitude toward recovery.  Should I have been more cautious around the holidays?  Should I have avoided dining out?  Should I have hibernated at Christmas?  Am I washing my hands often enough? Yes, my chapped hands reply.  Am I drinking enough?  Most definitely.  Am I getting enough fresh air and exercise?  Three miles of walking outside each day has been my goal.  Am I eating well?  Hmmm...well, I'm eating...but most of the time it is healthy, though there is room for improvement.  (remember that resolution to eat an anti-inflammatory diet?)

It's difficult to find balance.  How do I go out and live my life without actually going out and living my life??  How do I not become a prisoner to this cancer??  I continue to search for the answer.

For now, though, I'll stay at home, spend my working hours in my home office, and don a mask when the day comes that I am ready to venture out again.

Sunday, January 1, 2012

January 1, 2012

This time last year, my family - me, Joe, Sarah, Joseph, and our foreign exchange student son Ondra - were arriving in Manuel Antonio, Costa Rica, to kick off the new year.  We settled into our home away from home, went out to dine on the deck at Barba Roja, and then stopped at the Super Joseth to stock up on groceries.  Oh what a nice start to 2011!  We had a wonderful 10 days, soaking in the sun, resting, relaxing, exploring.  It ended too soon and, in hindsight, it was the calm before the storm:  we arrived home to a snowstorm, spending the final evening of our trip sleeping on our suitcases at the Charlotte, North Carolina, airport.  And then the big storm came - multiple myeloma.

Today, a year later, Ondra is at home in the Czech Republic, we are home in NH, and there is no snow on the ground or in the forecast.  Maybe this is a sign that 2012 will be a calmer, easier year.

As I walked around my neighborhood today, I was thinking about my resolutions.  I am a big fan of resolutions, though it often takes me a few weeks of the new year and a long walk at the beach before I have my resolutions written in my Book of Resolutions journal.  The same holds true this year.  I do, though, already have a few resolutions formulated for this year:  drinking 2-3 quarts of fluid a day, walking at least 3 miles every day, and eating an anti-inflammatory diet.  I committed to these resolutions a few weeks ago, right after the Multiple Myeloma Symposium at Dana-Farber.  So far, I've done well with the drinking and walking, but I've been struggling with the diet.  I suppose less-than-optimal eating is part of the holiday season, but the season is over and the time to start is now - or at least as soon as I get to the grocery store!

The anti-inflammatory diet is similar to the Mediterranean diet.  It includes a variety of vegetables and fruits, whole grains, nuts, olive oil, and fish.  Thankfully, it also includes occasional red wine and dark chocolate!  Some believe that inflammation in the body is the root cause of many diseases, including cancer, and that we should therefore work toward minimizing internal inflammation.  It makes sense to me.  The anti-inflammatory food pyramid provides a good guideline for healthy eating.  If only it provided recipes!  While I do love to cook, I still prefer to have a recipe.  I guess 2012 will be a year of experimentation in the kitchen.  (Family and friends, you have been warned!)

My best wishes to everyone for a happy, healthy new year!