"Isn't there anyone who knows what Christmas is all about?"

Linus:  "Sure, Charlie Brown.  I can tell you what Christmas is all about."

"And there were in the same country shepherds abiding in the field, keeping watch over their flock by night.  And lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them, and they were sore afraid.  And the angel said unto them, 'Fear not, for behold, I bring unto you good tidings of great joy, which shall be to all people.  For unto you is born this day in the City of David a Savior, which is Christ the Lord.  And this shall be a sign unto you:  Ye shall find the babe wrapped in swaddling clothes lying in a manager.'  And suddenly there was with the angel a multitude of the heavenly host, praising God, and saying, 'Glory to God in the highest, and on earth peace, good will toward men."

"That's what Christmas is all about, Charlie Brown."

Wishing you, my dear friends, a joyous, peaceful Christmas, filled with many blessings.  Merry Christmas!

ER - I really didn't miss you

I suppose it was inevitable - a trip to the ER.  In the spring it seemed like I was in the ER or at the hospital on a regular basis.  I haven't thought about the hospital since my transplant, so you can imagine that the ER was far removed from my thinking.  And yet there I was last night for 4 1/2 hours.  Mask on, in an isolated room, listening to the doctor say, "You may have to stay overnight."  And I had only a half-full pocketbook.

I've been fighting a cold, head congestion and some lethargy for more than a week.  I did not go into work all of last week, though I did manage some work hours at home.  I thought a week of being at home would snap me back into good shape.  Alas, it did not.  So before I went to the oncologist for my regular lab work this Monday, I reported my symptoms.  The triage nurse scheduled an appointment for me with a PA, just to make sure I was doing all that I should be doing to recover from the cold.  The PA gave me a quick check and sent me on my way with a Z-Pak prescription.  Now keep in mind this is the same PA who didn't give me a prescription when I had that nasty infection in the spring.  And what happened then?  A trip to the ER and then a hospital stay that was ugly. Ugly indeed.  (Remember the nasty language blog?) I'm thinking the PA decided to prescribe a drug that could possibly ward off any illness that was lurking in my body but at the same time would not be overly potent.  And what happened this time?  The very next day - or evening, rather - I had a temperature of 101 and my oncologist insisted that I go to the ER for a complete assessment.  He said my immuno-suppressed system with a temp of 101 needed prompt attention.  Needless to say, this particular PA has 2 strikes against her.

After I had a good cry for myself, I prepared for a trip to the ER.  My son checked some items in my bag and refilled supplies where needed, I grabbed my iPad, Joe arrived home, and off we went.

Now I can't recall if I mentioned that I had my port removed a few weeks ago.  As I laid on the ER bed while a nurse inserted an IV, I wondered why I had done such a thing! (I believe the port being a potential source of infection in my diabetic body is why!)   How much easier, though, it would be to have labs drawn from my port rather than my arm!  And, yes, they had to use both arms.

A CBC was drawn, as were several culture bottles, and chest x-rays were taken.  Everything was normal.  An hour-long drip of a more powerful antibiotic was given and back home we headed, new prescription in hand.

Having cancer isn't easy and it sure isn't a whole lot of fun, not for me and not for those who love and support me.  But, as I wrote so long ago, it's our 'new normal.'  I've been so fortunate and so blessed to have experienced such a successful post-transplant recovery.  I think at times we forget that I have cancer - and in many ways that is a good thing.  Last night, though, was a reminder that this 'new normal' is going to include the occasional trips to the ER and overnights in the hospital.  My sister sent me a text last night that said, "Don't be getting yourself crazy about this fever.  You'll get a new antibiotic and it'll be fine.  Love you!!"  And she's right.  If I get myself crazy every time something goes awry, (for instance, getting crazy as I tried to pull from my brain the memory of how to spell 'awry'), I am going to have a long, frazzled life ahead of me.  A trip to the ER, an IV.... just detours in the road and not dead ends.  Even the momentary loss of my spelling prowess is just a detour; after all, I still knew how to use a dictionary and thesaurus to find my way to the word I couldn't remember how to spell.

Hope

Today was a full day at Dana Farber for the Multiple Myeloma Patient Symposium. We were there from 8am - 3:30pm. It was a lot of sitting! About 300 people attended and we were divided into 2 groups with the speakers spending a portion of the day with each group. And what wonderful speakers - doctors and nurses - we had! I am so fortunate to live in an area with so many hospitals and researchers focused on multiple myeloma. Represented today were Dana Farber, of course, Beth Israel Deaconness Hospital, and Mass General, sharing their research as well as that of their partners and colleagues in the US, France, Italy, and Spain.

I'm somewhat overwhelmed with the considerable research presented today. Much of it was quite technical, but it was mostly presented in terms that we patients and families could understand. Are all diseases studied in such depth? I wonder. It seems to me that I haven't been exposed to as much research in type 1 diabetes. Is it that I am just so accustomed to having diabetes that I no longer seek information on new developments? It could be. Though I receive regular updates from the American Diabetes Association, I haven't done much further investigation since I looked into moving to my insulin pump 3 years ago. Still, it seems that much progress has been made in MM in the 9 months that I've had this disease.

In addition to learning about the current research in MM, I walked away from today's symposium with 2 things: awareness and hope.

Awareness of the steps I need to take to support my good health: eating an anti-inflammatory diet, drinking at least 2 quarts of fluid daily, exploring complementary medicine, and exercising each and every day. (don't ask me about my daily walking - it's gone by the way side - but will restart tomorrow!).

And hope. Truly tremendous hope.  The developments in treatment and the progress in research give me hope that in the future I will receive more effective medication, experience fewer side effects, and ultimately live a life where multiple myeloma abides as quietly in my life as does diabetes.

'Tis the season...

...for gathering with friends and family, searching for the perfect Christmas tree, decorating, shopping....and getting colds. Yes, I have my first cold of the season, the first since my transplant. To be honest, I can't really tell if it is a cold or if my maintenance dose of Revlimid is just kicking in. I feel tired and have a stuffy head and can't seem to shake myself into the holiday spirit. Maybe it's because there is no snow and the weather is very mild for December in NH. Whatever the reason, I'm here at the oncologist for a visit and my first infusion of Zometa, a bone strengthening drug.

Overall, I have felt well. I've felt strong and healthy. It's been a bit hectic, though. Thanksgiving was a wonderful time for me, but it took me several days to recover. It was the busiest I've been since my transplant. Still, I was so glad to celebrate the holiday at home as is tradition. It was one more sign that I am returning to good health and a good reminder that I need to continue to be mindful that I still am in recovery mode. It led me to cancel my annual Christmas cookie bake-a-thon that I've held the past few years with family and friends. It's disappointing, but we'll resume next year!

I am 16 days into my 21 day cycle of Revlimid, the pill that I take daily to keep my multiple myeloma at bay. I am on less than half the dose I was taking during the spring. One thing I can count on with Revlimid is a tingly face. Remember that??? Doesn't seem to matter how low the dose is, my face is tingly.

I wrote the above 3 days ago, meaning to get back to it.  I didn't think it would take me this long!  But since then...

....the Dr. stopped my Revlimid and will start me again after Christmas - too much of a tingly face is not a good thing
....I had a bit of a response to the Zometa - some body aches and a sore jawbone (Zometa, for some reason, is not kind to the jaw)
....I was home from work the entire week with a cold - the rest has made all the difference and I feel so much better!
....and, last but not least, my lab results were excellent!

I'm glad to be off the Revlimid until the 26th.  The tingly face really was bothersome this week.   Even today I still have some tingles.  I know from my experience on chemo that drugs need to be slowly introduced to my system.  My body just rejects being bombarded with such powerful drugs.  When I start up again, I'll stay on the same dose but for a 14 day cycle.  I hope it makes a positive difference.

Tomorrow I'll be at Dana Farber for the Multiple Myeloma Patient Education Symposium.  It will be a full day with the DF team of doctors, nurses and social workers sharing the latest research on MM.  I plan to come away from it with good understanding of what is needed to keep me healthy and strong for many years to come!

December 1, 2011

Today is a great day!  It marks the 100th day post-transplant!  I made it!!

It's hard to believe just 100 days ago I was in the hospital, pretty well medicated, lying in bed while the chaplain blessed my stem cells.  And here I am today, slowly but surely returning to a good level of activity - walking, working, eating well (maybe a bit too much!), and feeling good about my progress.  Sure, I do still get tired and I do still worry and I do realize that I am still in my infancy as far as recovery goes and I still do have a mask and gloves in my pocketbook (just in case), but each day brings about a stronger me.  I am grateful for the many blessing that have come my way in 100 days.

There's still a long way to go, but for now let's celebrate!!

Happy Thanksgiving!

Wow, wow, wow!  Thanksgiving is already here!  It's been a fast year, a year full of challenges and blessings.  As I sit here, the night before Thanksgiving, I can't help but think about the days and the weeks and the months that have passed.

I think back to the Ides of March - March 15th.  I remember posting on my Facebook page the quote from Shakespeare's Julius Caesar:  "Beware the Ides of March."  I was an English major in college and always found humor in quoting Shakespeare on March 15th.  My kids would always get a text from me - Beware the Ides of March!  Strange, I know :-)  Anyway....in the play, Caesar had been warned that the Ides of March would be a fateful day for him and indeed it was - he was murdered by his closest friend and ally.

And as it turns out, the Ides of March, 2011, was a fateful day for me.

On the morning of March 15th, I dragged myself to a doctor's appointment.  In the previous weeks, I had been to the gym and could only walk on the treadmill.  I didn't have the energy to run.  I thought I was really out of shape.  And I found myself sleeping very soundly at night, which was (and still is) unusual for me.  I thought the craziness of work was catching up with me.  Even when I was sleeping 10 hours a night and then napping 3 hours in the afternoon I thought it was just exhaustion from work.  But when I realized that I was out of breath walking up the stairs in my house, I knew I needed a check-up, so off to the doctor's I went.

On the evening of March 15th, the doctor called and told me I was severely anemic and my white blood cells were extremely low.  I was told to go immediately to the emergency room, where the staff was waiting to give me a transfusion...or two.  And then I was admitted to the hospital.

The Ides of March certainly kicked me in the butt!  Now how humorous is that???  I have to admit that I do find it a bit ironic.

In the 8 months since, I've had 11 transfusions, 2 bone marrow biopsies, 2 episodes of neutropenia requiring hospitalization, one massive infection, a picc line, a port, a Hickman line, 10 week of induction chemo, 2 rounds of the white blood cell builder called neupogen, a 1 day dance with Cytoxan chemo, 2 days of stem cell collection, 2 days of the extremely nasty Melphalan chemo, an autologous stem cell transplant, about 5 weeks of memory loss during and after the stem cell transplant....and let's not forget hair loss.

Let's also not forget, in the words of my primary care physician, 'a phenomenal recovery,' a continual return of energy, the good 15 lb weight loss (yes!!!), the return to cooking and walking and working and life....and my hair is starting to grow!  All in 3 months - 92 days to be exact - post-transplant.  Wow, wow, wow!!

And so on this Thanksgiving, I am grateful for the constant and abundant love and support of my family - they never let me lose hope.  I am grateful for the friendships that have uplifted me so often.  I am grateful for the prayers from people near and afar.  I am grateful for the amazing doctors and nurses who provided me with outstanding care.  And I am grateful for the lessons I've learned since the Ides of March.

I wish you all a Happy Thanksgiving!  And let me leave you with my wish for you in this video from my favorite Christmas movie, The Muppet Christmas Carol.  (yeah, I'm still a kid at heart!)

News of the Day

I just returned from my appointment at Dana-Farber.  I confess that I was anxious about this visit, since one of my test results from my NH oncologist visit was high.  When I had spoken to the Physician Assistant about the result, she expressed concern and that initially alarmed me.  However, my oncologist hadn't called and Dr. Anderson hadn't called, so if they were not concerned enough to call, why should I be alarmed?  Needless to say, though, I prayed and practiced my newly-learned meditation and, sure enough, my state of mind moved from 'alarmed' to 'mildly anxious.'  I would like to have been 'calm' but that could only be achieved with a little dose of Lorazepam.  Still, I try to hold on to the belief that I shouldn't worry until it is confirmed that I have something to worry about.

As it turns out, I currently have nothing to worry about :-)  My lab results look great!!!  The one high result I had in NH had nothing to do with my myeloma - or my diabetes.  And it could have been high for any number of reasons, including infection, a cold, etc.  I was relieved and thankful, though I do think I'll discuss the conversation with the PA with my NH oncology team.  It was unnerving.

Anyway, I will soon start on a maintenance dose of Revlimid, a pill that I was taking during my initial chemo treatment.  I'll take Revlimid for 21 days and then be off for 7 days.  Though some with myeloma have decided against returning to Revlimid, numerous research studies in the US and in France have supported this maintenance dose for the best prognosis, so I'm taking it!  I'll also start on Zometa, a bone strengthening drug.  Multiple myeloma can impact bone strength, and while I have no bone deficiencies at this point, I want to keep my skeletal system strong.  And soon enough, my port will be removed.  Whew - no more foreign object in my body!

And lastly, Dr. Anderson laughed when I asked if I could have a glass of wine at Thanksgiving.  "What - you haven't had any wine??  It has resveratrol and is good for you!"  I guess that means yes :-)

Back from Kripalu

My week-long trip to Kripalu ended a week ago and I had been hoping to write sooner, but Mother Nature decided to bring an early taste of winter to us, so I've been preoccupied with that.

Let me tell you, though, about my experience at Kripalu. I arrived at Kripalu on Sunday to find a group of 11 women, 3 presenters, and 2 assistants ready to start our journey. True Healing - Women Whose Lives Have Been Touched by Cancer - that was our focus for the week. In total, there were 13 of us with cancer - one of the presenters and one of the assistants have active cancer.

To say that the week was intense is an understatement. After the first gathering on Sunday night, one of the participants left the retreat and didn't return. She said it was too much for her to hear about everyone's cancer. Yes, indeed it was, but there was such great strength and such tremendous courage in our little group! We laughed, we cried, and we learned from each other. It was an important and profound experience for me. I am so glad I was well enough to go.

I did, though, find myself at odds a few times with Kripalu life. The days were very long, so I never made it to early morning yoga. I had expected to be immersed in yoga and that was not the case. I was disappointed, but I needed to be mindful that I was only 9 weeks post-transplant and not accustomed to long days. Other women, still in chemotherapy, were unable to make morning yoga, too, and it was good feedback to give the presenters for next year.

I also found myself conflicted about mealtimes. Why had I not thought about this beforehand?!? Kripalu has the most healthy food! It's one of the things I love about being at Kripalu. But I had not taken a meal outside of my house prior to this trip and I found myself avoiding certain foods, like the fabulous salads, because I was concerned about the possibility of being exposed to any type of bacteria. As health conscious as they are at Kripalu, I am sure I would have been fine, but I didn't want to take any chances. I was taking a big enough chance just being in the dining room with a few hundred people - why not be extra cautious? I did have a bag of grocery items in my room, mostly in case of low blood sugars, but I could have survived on that bag if needed. Fortunately, I never came across anyone with an illness, though I was prepared with mask and gloves if needed. And I did have my Lysol wipes to thoroughly wipe down my room when I arrived.

What I appreciated most about the week was the opportunity to be with and hear from other women with cancer. Everyone has had cancer longer than me, so they were able to verbalize some of the things I have been feeling but couldn't understand or articulate. And the presenters helped me to look at my cancer in a way that helps me live with it a little better. Two questions they asked - what did I lose with the diagnosis of cancer? and what did I gain? To my surprise, I've gained more than just extra time in the morning since I don't have hair to fuss with!

One of the things I've lost is part of my identity. Will I ever hike again? Will I ever hike those high mountains again? I worry about that. I want to be back outside on those mountains and not via a chairlift! I miss that part of my life.

One of the things I've gained is a return to a more conscious practice of my faith. I start and end each day with a conscious awareness that the Lord is my shepherd, I shall not want. Though it is easy for me to have cancer hovering in the back of my mind, and sometimes in the forefront of my mind, and it is easy for me to be pulled into my work and the struggles of daily life that we all experience, I find peace when I pray. I am looking forward to the time when I am physically strong enough to return to daily (early!) Mass.

And I learned the basics of meditation. It takes practice and I'm not very good at it yet, but it provides me with calm when I'm overwhelmed with anything, not just cancer.

It was a good week.

Here a a few photos. The week started with beautiful fall days and ended with snow!

The results are in...kind of

I received a call from the nurse at my NH oncologist.  She said all of my tests were back and everything is normal.  I should be doing the dance of joy, shouldn't I?  Instead, I'm holding back on the dance...at least until I see the lab results myself.  You see, I asked the nurse a few questions, specifically about my M-spike, a myeloma marker.  The nurse told me she didn't see anything marked M-spike.  Then I asked about my protein level.  She said '6.something, all normal.'  This is not the protein level I was asking about; if it were and those results were accurate, I would extremely unhappy.  So I'll get back to my oncologist and get the results in my hand and then I'll be happy.

However, my primary care physician, who has been truly amazing - she calls every month to check in - called today and said my recovery has been 'phenomenal!'  And I believe it has.  I'm doing so much and I almost feel like my old self.  Still, I need to be mindful of my activity.  I worked out of the house 3 days this week and now I am very, very tired.  Clearly, too much too soon.  Lesson learned.  But maybe I'll do a little dance of joy tonight anyway :-)

This Sunday I am off to Kripalu for a weeklong retreat for women with cancer.  I will be there Sunday through Friday.  I've never been to Kripalu for more than a few days, so this will be a new experience for me.  I'm looking forward to connecting with other women, practicing yoga, and learning some strategies for when I feel anxious about having cancer.  I'm also looking forward to being back in the Berkshires.  The foliage should be spectacular! Full report when I return.

Eight weeks ago today

Eight weeks ago today, my stem cells were re-infused in me. Eight weeks ago! In some ways, it feels like yesterday and in other ways it feels a lifetime ago. One thing is certain - a stem cell transplant is not for the faint of heart. It was much more challenging than I understood it would be and I know that I am just starting to remember the 3 weeks in the hospital and the first 2 weeks at home. I don't remember much. I have little memory of visitors, conversations, or nurses (apparently I made 2 bracelets and gave them to the nurses who cared for me - no memory of that). I do remember some of the pain and I remember how tired I was and I remember walking around the unit, trying to get some exercise. I'm told while in the hospital I said to my sister Cindy that I had been watching cooking shows and had written down Thanksgiving recipes. If I had written down recipes, they are nowhere to be found!

And today, 8 weeks later, I went to an appointment with my NH oncologist. He was surprised to see how well I am doing. I told him I was out and about by myself, walking 15 - 20 miles a week, and working from home. He told me that some people are still in bed at week 8! I think I would never make being in bed for 8 weeks without totally losing my mind!

Now granted, I still get tired, my walking is not always aerobic, and I am only working 10 or so hours per week. I still suffer from indigestion, sleeping through the night is not happening, and my taste buds haven't fully returned. I still have a long road to recovery. I am mindful that I am only 8 weeks beyond the major trauma my body experienced.

However, how blessed I am! Really. To be as well as I am today, it is quite amazing to me, particularly after seeing my dr's surprise today. My prayers and your prayers continue to be answered. Yes, I am blessed.

Oh, and my test results from my CBC were mostly normal. There were 2 slightly low counts, but nothing to cause worry. Other tests results, more indicative of myeloma, will be ready at the end of the week. More on that when I have the results.

Tomorrow I make my way to my office at work. I'll stay there for a couple of hours. I know I'll be tired just getting ready and driving there, but it will feel good to be there. And I'll be without a scarf :-)

What a difference a week makes!

I know my last blog entry had a few people concerned.  It had been an emotional week.  But that low week came and went, and this past week was quite different.  It was a high week!

I'm working more regularly now from my home office.  It is good to have my brain engaged again with work.  And while I still occasionally have to search my brain for the right word, I think my cognitive engine is chugging less and roaring down the track more often.  It feels good!

And I am exercising more now, too, by way of walking.  This long weekend I clocked more than 13 miles on my pedometer.  I need to continue to walk during the week, though.  I don't want to return to my old habit of being a weekend warrior.

But back to the topic of work.  Tomorrow is a big day.  It's my first professional appearance since the beginning of August.  I have a 3 hour meeting to attend and there has been a lot for me to think about in preparing for it.  Germs, of course, are high on the list.  What if someone in the meeting has a cold?  Do I pop on the mask?  Leave?  I am prepared to do either.  Shaking hands?  Hmmm.  I've got the hand sanitizer in the pocketbook just in case, but I probably will just decline a hand shake or a hug from my colleagues.   What to wear?  Not much fits now that I am down 15 lbs.  I did manage, however, to find an oldie but goodie Ann Taylor suit in my closet that hasn't fit in awhile and now fits.  Whew!  Good thing I didn't give that away!  But the head?  What to do with my somewhat bald head?  Scarf or no scarf?  After much fretting about it and talking with others, I decided on no scarf.  I have teeny tiny hair on my head, so I am not actually bald (pretty close, though!), and I think the scarf makes me look like I'm sick.   No scarf!  And the final consideration - can I last the entire 3 hour meeting after driving 30 minutes to get to the meeting, never mind the fussing to get up early, appropriately dressed, and out of the house on time?  I guess I'll find out tomorrow.

Onward and upward!

The ride

The Mind Eraser.  The Great Chase.  Two Face:  The Flip Side.  These roller coasters could all be renamed:  Erasing Susan's Mind, Susan's Great Chase, Two Face:  SUSAN and susan.  One moment I'm up at the very top, the next moment I'm careening downward, usually into a puddle of tears.   One expects to go up and down on a roller coaster.  For me, the harrowing downward track comes without notice.  It's exasperating and exhausting.

More and more often these days I feel very good.  I feel energized and happy and ready to 'get back to normal.'  It's on those good days that I am most surprised when tears come.  Maybe it's because I realize there is no 'getting back to normal.'  I am changed, I am different, I am...I have cancer.  Why and how can I still, still, after all these months be stunned - yes, stunned! - that I have cancer??  It aggravates me that I have these erased-mind moments.

I haven't always been quick to tears (though my family and friends may disagree), but it has become more so as I've aged.  I'm emotional, yes, but terribly sentimental.  I had family visitors yesterday and I thought I would lose it when they arrived and then again when they left.  And my dad returned to Florida today - that was a good long cry, with sporadic outbursts during the morning.

Is this extra tearfulness related to having cancer?  I don't know.  My guess is yes.

When I last saw Dr. A, he told me to live my life and don't think any ailment or lousy day means the myeloma has reared its nasty head again.  Easy to say, hard to live.  I am anxious for my next check-up.  It will be here in NH.  I won't return to Dana-Farber until November and then every 3 months thereafter. In between, I'll see my NH oncologist monthly.  This change is because my check-up at D-F was very good and my blood counts continue to show the positive impact of the stem cell transplant.  Dr. A feels that I am ready to be released from his weekly care.  All good news.

So what's with the tears, you ask?

You see, I'm on this new ride, not the Mind Eraser, the Great Chase, or Two Face: the Flip Side.  I've taken my seat, tightly buckled my seat belt and secured my harness.  I'm on the ride of my life and there is nothing quite like a roller coaster to test one's mettle.

Happy days

Well, I think I've finally turned the corner.  I've had 4 consecutive good days and today looks like it will be a good day 5.  I'm sleeping better, eating better, feeling better.  I still have regular bouts of nausea and my energy level sinks after lunch, just in time for a daily nap.  But my spirits are lifted and I feel more hopeful. It has been a rough 2 weeks at home.  I never expected the transition to be so difficult.  Yes, I knew I'd have physical limitations and serious food restrictions, but I hadn't anticipated feeling so poorly - and I really felt poorly.

It was Dr. A who helped with my turning the corner.  Actually, I think he pushed me around the corner!   When I saw him last week, he told me my blood counts were all very good and it was time to start living my life.  He lifted many of the restrictions, but told me not to eat sushi.  That works for me since I don't like sushi!  Armed with his blessing, I thought I was ready to move on.  Not so fast, though.  My head understood it was time, but my body was still full of fear and my focus was still on the nausea, indigestion, fatigue - how could I possibly move on??

Then Saturday arrived.  I checked my email and found a notice that a very good friend had tagged me in a few photos on Facebook.  Hmmm...how could that be?  I haven't seen her in a few months.  I checked out the photos and there she was, wearing an MMRF Race for the Research sweatshirt.   She and 2 family members were participating in the MMRF race in Boston, in my honor. Boy, did I cry!  I cried because I was so touched by her participating in this race for me; I cried because I wanted to be there with her; I cried because I was tired of feeling sick and really needed to turn the corner.

So I took my first step - Joe took me to a garden shop in the afternoon and we walked around, selecting mums, and then we drove around on that lovely fall day.  I felt so good - tired, for sure, but good.  Then on Sunday a friend took me, armed with my pedometer, for a walk at the beach on yet another perfect fall day.  I felt really good at the end of that trip.  And on Monday, I strapped on the pedometer and walked around the neighborhood near my home.  I clocked more steps that I had the previous day!

Also on Monday, I got back to work from my home office.  Though I managed only 2 hours before I crashed, I managed 2 hours.  And I will continue to work daily, even if just for a short time.

Lastly, I registered for a week-long retreat at the Kripalu Center.  The topic: Women Touched by Cancer.  I think it will be a good opportunity to talk with other women who have experienced cancer in their lives and it will provide me with the foundation to move forward with yoga.

When I return to Dana-Farber on Thursday, I think Dr. A will be quite pleased with my personal progress, as he has been with my physical progress :-)

Exercise

A fellow blogger asked me to post his article on the benefits of exercising during cancer treatments.  I guess I better go find my pedometer and sneakers!

Fitness Can Be A Lifeline For Cancer Survivors

Mental and physical stress is definitely two everyday factors in the life of someone who has been diagnosed with cancer. Though a cancer diagnosis of any kind (including common cancers such as breast cancer and even rare cancers like mesothelioma) can cause anxiety and stress, there is something that cancer survivors can do to help improve their day-to-day well being. Cancer patients who exercise consistently have been shown to have lower mortality rates and better quality of life than those patients who are inactive. It may not be the first thing on the mind of a survivor after they come home from a chemotherapy session, but maintaining a fitness routine is vital to living the best life possible.

An informative brochure put out by the Cancer Resource Center at the University of California - San Francisco states that clinical trials have revealed some significant gains for cancer patients who decide to keep exercising while they undergo cancer treatments. For example, the conductors of the clinical trials discovered that prostate cancer survivors who exercised not only reduced their risk of developing incontinence, but they also were able to diminish the side effects of treatments like radiation and hormone therapy. For women who had received a breast cancer diagnosis, those who exercised lowered their chances of dying by 64%. These results show the importance of exercise in the lives of those people who wish to do more than just sit by and wait for cancer to take their lives. Even with just a little exercise, the quality of life and the life expectancy can be greatly improved for cancer survivors.

Though exercise may not be the cure for cancer, society can no longer deny that it significantly helps those who may be going through the mental anguish of a cancer diagnosis or the physical pain of cancer treatments. In the aforementioned document, clinical scholars at the UC-San Francisco found that all that colon cancer survivors had to do was set aside 6 hours per week for walking at an average pace to achieve a “47% improvement in disease-free survival" compared with their inactive counterparts. This means that, for some cancer survivors, a little exercise has gone a long way in helping them to stay alive. Not only will developing a fitness plan help cancer patients ease their mental stress, but it can clearly help them with the physical fight as well. There is no doubt that exercise takes care of both the body and the mind, helping survivors achieve a well balanced life.

By: David Haas

 http://haasblaag.blogspot.com

A week of extremes

It's been quite a few days since my last posting.  I'm sorry about that but it's been a rather rude and rough welcome home.  It's been a week of extremes:  extreme fatigue, extreme nausea, extreme aches and pains, and extreme aversion to anything that might possibly keep me hydrated.  For some reason, I thought I'd arrive home with a just few aches and pains and a little fatigue.  Wrong, wrong, wrong.  Really wrong.  I was far more physically comfortable in the hospital, thanks to nurse Brenda who hooked me up to a morphine drip with my very own little 'push here to feel better soon' button.  And at night when I was sleepless, Brenda would say, 'hold on, i'll be back.'  Then she'd appear with a syringe that would push a more-precious-than-gold medication directly into my IV line and soon I'd be in sweet, sweet slumberland.  And when I felt nauseous, she hand me a little tab to melt under my tongue.  It was the best.

Why did all the meds have to change when I came home and why don't these new meds work as effectively as the hospital meds???

Still, the doctors say I'm right on track.  Miserable, yes, but on track.

I'm home

I was discharged a day early and so I am now home sweet home.  It was good to sit outside for a little bit and to nap in my own comfy bed.  My Hickman line was removed (ouch!) before I left BWH and my port was accessed, leaving me with a small needle protruding from my left chest.

I wish I could feel exuberant about leaving the hospital but I have so little energy.  I am exhausted.  The nausea has become a part of everyday life. I am tremendously achy due to the neupogen shots.  I feel physically and emotionally worn down.These past weeks were difficult and challenging.

But now the challenge, this challenge, is over.  There will be more challenges to come, no doubt. After a few days of rest, I'll be ready for whatever is put in my path.

I know it's only 7:30 at night, but I am heading to bed.  Good night to all!

Razor blades

I mentioned to Joe yesterday that it's hard to believe I had my stem cell transplant just a few days ago. "No," he said, "you had it almost 2 weeks ago." "Really?" "Really."  And so goes the conversation.  "Well what have I been doing these 2 weeks??  I can't remember."  "You've been recovering, doing all the right things.  Look how great you feel today."  "I know, but what have I been doing??  I don't remember what I've been doing."  "Well, you've updated your blog, you've made some jewelry, you've read but just a little, you've walked around the unit.  How's that for doing?"  In my mind, not much.  I could have done all of that stuff in a morning.  What about the other 13 and a half days???  "You don't remember the pain?"  Ahhh...the lightbulb went off.   Now I remember what I was doing - I was accepting any and all medication offered.  I was in terrific pain most of the time and then I was heavily medicated.  Medicated naps were my activity of choice!

Yeah, my throat.  I  remember the Transplant Nurse telling me to suck on a lot of ice chips before, during and after the Melphalan - and I did.  She said that might protect my throat and esophagus during the upcoming weeks.  I sucked more ice chips that I can believe and I really don't ever want to suck an ice chip again.  However, despite my ice chip obedience, my throat and esophagus were in much pain when talking and swallowing.  My throat hurt so much that I had to whisper in my newly found low voice.  Sometimes it hurt so much I was unable to enunciate and I sounded like a husky-voiced mumbler. And because I was heavily medicated, I was falling asleep during almost all attempts to converse.

My esophagus was even worse than my throat.  I think I may have mentioned in an earlier blog that without the ice chips, it might feel like I was swallowing razor blades.  Despite the ice chips, I felt like I had a wad of blades that went into a frenzy whenever I tried to swallow.  Edward Scissorhands comes to mind.  Yes, I was in a lot of pain.  No wonder I wouldn't remember.  Those were dark days.

Late Friday and Saturday I began to pull out of the cycle of pain and meds.  Today I feel very little pain and I've been weaned from Dilaudid (I even had my own 'push when it hurts' Dilaudid button, as well as a continuous low stream).  I'm still napping quite a bit but it's not a medication-induced sleep.  I'm not eating much - maybe 600 calories a day.  I thought I'd lose 20 lbs during this ordeal, but no, I've actually gained from the continuous flow of fluids into me.  One of the fluids has been potassium.  Now that I am fairly lucid, I'll need to ask the doc why I needed such a high intake of potassium.

So that's about it from here.  Oh - one more thing - I celebrated birthday #52 last weekend!  Joe and Joseph smuggled in a frozen Sara Lee Chocolate Cake.  Mmmmm.  It was the best cake I've ever tasted! I do recall, though,  that the guys had one piece each and tossed the remainder in the trash.  Very unlike them.  My medicated opinion strikes again!

One more item:  Joseph left for his sophomore year at college.  I missed that completely.  Joseph, I hope you got there without too much event, have everything you need for your new room, picked up your books at Uncle's, and will stay focused on the end goal - becoming a happy, successful, and educated young man.  I may have given you this talk during my medicated state, but even if I did, it's worth repeating again...and again, and again... :-)

And so I'll close here for now.  I have 3 more days here in my little bubble room at BWH.  I pray that all goes well over these days and that there are no complications in my discharge.  The nurses have given me outstanding care and I will miss them.  But I am so looking forward to being home, seeing my cats who have been in kitty boot camp this week (no outside for them until I am completely recovered), looking out the window to see my flowers that Mom has been tending, and resting in my own bed.  When challenged by cancer, one comes to appreciate even the smallest things in life.

Bad Day

You may remember the song Bad Day from a few years back. I think it was first made popular on American Idol. Here's my version of the song. Sing a long if you are feeling miserable, too.


BAD DAY

Here is the moment I dreaded the most
The effects of the chemo have taken front post
They tell me my blue skies have turned to gray
They tell me my smile has faded away
And I really am carrying on.

They told me mouth care was a must
It wasn't pleasant but I did it without fuss
Still my throat feels shaved away
I swallow and the invisible blades play away
And I really am carrying on!

(chorus)
'Cause I'm having a bad day
I'm taking one down
My mouth and my throat hurt all the way down
They told me it would happen
They worked to prep me well
But my throat and my mouth really hurt like hell

I'm having a bad day
I'm having a bad day

(interlude)
What I need is an Italian ice
It will help soothe and numb what feels sliced
And then I'll take those heavy drugs!

(Back to chorus)
'Cause I'm having a bad day
I'm taking one down
My mouth and my throat hurt all the way down
They told me it would happen
They worked to prep me well
But my throat and my mouth really hurt like hell

I'm having a bad day
I'm having a bad day

The Feast of St. Anthony

Today begins the annual Feast of St. Anthony celebration in Boston's Italian North End.  It's a weekend-long event not to be missed!  And despite the forecast for Hurricane Irene to hit hard this weekend, the chair of the feast said the feast will go on, as it has since 1919.

This feast is the largest feast in all of New England.  It features delicious food, parades - the Grand Parade on Saturday at noon -  musical entertainment, culinary demonstrations, and, of course, Mass.  This year, Giada de Laurentiis will host the Saturday 2pm cooking session, followed by the sales and signing of her cookbook, Giada at Home.  On Sunday, there is the Caprese Challenge.   Anyone can join the Challenge that seeks to find the budding culinary talent who can 'put their unique spin on the tradition Caprese Salad'. The feast ends at 11pm on Sunday with a candlelight parade to the Chapel of St. Lucy, whose feast is celebrated in the North End on Monday.

During the Grand Parade, which lasts for about 10 hours (yes, that's right - 10 hours), a 700 lb statue of St. Anthony is carried down the streets of the North End and people pin $1 bills on the statue and on the ribbons streaming down from the statue.  The statue appears again at various times throughout the Feast.  The money raised supports a variety of North End charities, including little league and and the feast itself.

Now you may be asking just who is St. Anthony and why such a big feast.  To many Italians, St. Anthony is the Saint of all Saints.  A Franciscan, St. Anthony of Padua is considered the saint of miracles, the finder of lost items, and the patron of the poor.  Italian Catholics probably pray to him more than any other saint.  Maybe even all Catholics pray to him more than any other saint.  Thus, the big feast.

I'll be sad to miss the Feast this year.  And I'll be sad to miss Giada.  But here is a nice video of a delicious Giada recipe that one will find everywhere at the Feast.  Enjoy!

Day Two and...

...I'm back on my pump! AND my blood sugars are perfect! I am one happy camper :-)

I forgot - and really how could I? - to write about my transplant. To be honest, I slept through most of it. The hospital chaplain did come and talk with me before the transplant and she blessed the 2 bags of cells. Then the homecoming of my stem cells began and I fell back into a medicated sleep.

The nurses tell me I have one or maybe two more days before I'm neutropenic, meaning my immune system and my white blood cells will be gone. Then the stem cells will begin their work of rebuilding my immune system and a healthy new me :-)

Ok, time for evening meds and a tuck-in with warm blankets for a good sleep.

As an aside, some people have mentioned they are not receiving my blog even though they have signed up for 'follow by email'. Please check your email for a notice from either Google or Blogspot that asks you to verify your account on my blog. Once you verify your account, you will receive the blog via email.

Day One

Today is considered Day One post-transplant. Tomorrow will be Day Two and we will continue counting to Day 100. Day 100 will be a marker in my recovery, as will August 23, 2012, the full year post-transplant. The days are important to note because at each marker some of the restrictions will be lifted.

Day One - only 99 more days to the first marker!

Regarding the battle for control of my diabetes, I lost round one. The pump is detached. However, the skirmish continues! My blood glucose as been completely out of control and I'm not happy about this. I've left messages for both my Joslin endocrinologist and my transplant nurse. Taking it one notch further, I told my nurse that I used my own insulin to bring my blood glucose down. Self-medicating is a no-no, of course, but I just couldn't take another high blood glucose. Anyway, that one little act got the attention of the endo team here at BWH and they will be in to see me in the morning for round two.

Other than that, I've not been eating much, just a little bit here and there. I'm not very hungry. I've been sleeping almost round the clock due to the medications and the 2 days of chemo have left me very weak. My hair is falling out rapidly, it seems, but my hair is so thick I still have quite a bit.

I'm told it is still a few days away before I feel the full side effects of the chemo. Yikes! May I sleep through that time, too!

Thank you again for your prayers, cards, emails, and positive energy.

The battle for control

I'm a bit of a control freak. Hmmm...let me rephrase that: I'm a control freak! There - it's out! And right now there is a battle for control being waged between me and the endocrinology team at BWH. The cause: who is going to have control over my diabetes. Notice I said my diabetes. In this case, I think the controlling power is obvious - me. The endocrinology team fails to see that logic, and, therefore, plans to transition me off my insulin pump tonight. I am not happy.

Being off my pump means I need to rely on the nursing staff to test my blood sugar regularly. I've been here more than 24 hours and no one has tested my blood sugar even once. Being off my pump means I need to assume the endocrinology team will accurately convert my basal rate (the amount of glucose that is continually dripped through my pump) to a once-an-evening insulin injection. The endocrinology team doesn't know me. Being off my pump means I need to trust that someone other than me will determine the amount of extra insulin I need for meals, as well as for correction doses when my blood sugar is high. I not feeling the trust right now.

However, being a person in control (sounds so much more dignified than 'control freak'), I do have a Plan B...and a Plan C.

Plan B: talk with my Dana-Farber team tomorrow about the wisdom of my keeping my pump. And, if necessary, call in my own endocrinologist who is across the street at the Joslin Diabetes Center. Literally, he's right across the street. He, though, has already deferred to DF and BWH. Still, it is worth a try, unless I get a lot of push back from my DF team. I don't want to overly annoy them, remembering my good luck in having this team in the first place.

Plan C: the pocketbook...or what's left of it. It was semi-confiscated at room check-in. To be admitted to the transplant floor, all of my clothing, books, trinkets, pocketbook supplies - everything - had to be sealed in ziploc bags. The nurse then had to wipe down everything before it could come into my room. When she came to the last bag, with my usual pocketbook survival kit items, she said, "Everything you brought is fine, except for this bag. It's filled with prohibited items. They need to go home." I gasped! She placed the bag in the safe zone just inside my door...and then she left.

More tomorrow on the pump outcome. As for today, Melphalan went fine, except the staff gave me a bag of hydration that included dextrose, that lovely sugar, without telling me, which resulted in a high blood sugar that I discovered because I had a prohibited item in my nightstand drawer.

It's good to have a Plan C.

My new home away from home

It's 8:30pm and I'm settled in to my new home away from home at the Brigham and Women's Hospital. My room is comfortable and a little more spacious than a typical hospital room. In addition to my bed, I have a nightstand, a recliner, another chair, and a long padded bench with underneath storage. There's a mini fridge, a small flat screen tv, a few shelves, and a narrow closet. Plus a lot of medical equipment. There is plenty of room for all the photos, books, and 'knick-knacks' I brought. My family couldn't believe how much I brought! I think the nurse who had to wipe down everything may have felt the same way! Oh, and I have a nice big window where the sun streams through!

Settling in went easily. Questions from nurses and the weekend doctor. Dinner. Vitals and more questions. After my family left, I had my mouth care lesson (mouth care is very important during this particular chemo, since I'll soon have no immune system and will be prone to infection) and a few more questions. I am now awaiting a chest x-ray, an IV of potassium, and a new dressing on my Hickman line - the current dressing is itchy.

Tomorrow, my first dose of Melphalan starts around noon. Yikes! I've been awaiting that moment with excitement and fear. And now it is just 15 hours away! I could be really fearful but I'm choosing to see it as the beginning of my new healthy life :-)

And here was a boost for my spirit: tonight I was showing my daughter Sarah how much hair was on my pillow. Yes, my hair is now falling out and pretty quickly at that. She said, "well that means you'll get to wear those pretty hats soon!". And I do have some pretty hats :-)

The night before the big event

Bag envy

Tuesday and Wednesday were my days of apheresis, stem cell collection.  Linda, always by my side, drove me at 5:30am Tuesday down to the Kraft Family Blood Donor Center at Dana-Farber.  We arrived for our 7am appointment, ready to go.  We hadn't realized that my blood would first need to be tested to see if I had enough of a stem cell base to even start the procedure.  The group of us - only 4 of us on day one - waited for our counts, and when they came back all but one of us could start.  David, a young man from Vermont, did not have enough stem cells to start.

Though our appointment was at 7, it was 10:30 before I was finally on the collection machine.

We settled in for the day with our books, crafts, card games, and the tv to watch the afternoon Sox game.  The whole time, though, we couldn't help but glance over at David and his wife Ann.  They were crushed. Ann told us that David, like me, has multiple myeloma.  He's had it for a year and, unlike me, he's been on multiple therapies and most have been unsuccessful.  He is not in remission but is close enough to procede with apheresis and transplant.  The disease has ravaged him and he looked like a broken man.  I realized, as I continue to do, that I have been abundantly blessed that this disease has not destroyed my body or my spirit.

Still, I do worry about myself.  And I laid there worrying about my collection bag.  As I looked around the room, the other collection bags were filling with that nice milky pink fluid that is the tell-tale sign of stem cells.  My bag was mostly red.  I asked Mat, my Brigham nurse, about my red bag.  He said not to worry, all bags look different, stem cells can take their very own appearance in every bag.  I was reassured, but not for long.  Later another nurse walked by.  "Excuse me.  I'm concerned about my red bag.  Everyone else has milky pink bags.  Am I collecting any stem cells??"  I got the same not-to-worry, everyone-is-different speech.  Later, I ask my D-F nurse. Same speech.  The PA to the Chief of Pathology - same speech.  My transplant nurse - same speech, but she said to plan on being back on Wednesday because she was certain I wouldn't meet my target. I knew it!!  :-(

At the end of Tuesday, the nurses were taking a guess on how many stem cells I had collected - 2 million, maybe 4 million.  I needed 10 million.  Linda and I were praying I made at least 2 million, but secretly we both were thinking I collected only 1 million.  We left feeling tired and ready for dinner, our spirits still uplifted - we met so many nice nurses and patients! - and we considered options if I needed a third collection day.

Before we left,  I gave David a note with my St. Peregrine relic medal.  I truly believe it has protected me during my journey with cancer and I thought he needed it.  He and his wife were tearful and grateful.

Wednesday arrives:  Linda and I were at the Kraft Center before our 7am appointment, ready to go!  We were energized and feeling positive.  And then I found out the news of Tuesday's collection.  Are you ready?  I collected 7 million stem cells!!!  Linda and I were beside ourselves with joy and surprise!!  What a way to start the day!!  We settled into our assigned space and as Mat hooked me up to the machine, he said, "See what happens?  7 million stem cells after you had all that bag envy."  "Bag envy," I asked, not following his meaning.  "You were looking at everyone else's collection bag and you had bag envy, thinking your bag wasn't good enough."  I laughed!  He was right.

In the end, I collected 15.81 million stem cells.  And David, arriving at the Kraft Center wearing his St. Peregrine medal attached on his pants at hip level (stem cells come out of the marrow of the hip bones), made his number, was hooked up to his stem cell collection machine, and his bag was filling up in no time.  And it was red.

Today, I feel a bit tired, but healthy, happy, and ready (almost) for the next step:  hospital on Saturday for 3 weeks.  I'm sitting outside as I type and I plan to spend as much time outdoors as I can over the next days, because it will be mid-September before I am outside again.  I am going to eat a lot of blueberries and strawberries and cherries over the next days, because I won't be eating them again until next year.  And I am going to offer prayers of thanks, because I know I am blessed.

Linda, you were my guiding grace over these past days.  I can't thank you enough.  I love you, sister!

BC+D collide again

Yesterday was the day for my Hickman line to be placed. It was NOT a good day, though my Hickman was successfully placed so in the end all was well. May I vent a bit, though?

Last Thursday, my labs showed low platelets, too low for the surgery for the Hickman, so I had a platelet transfusion on Sunday. All good. Friday, the scheduler from the B&W hospital called to set up my surgery: 10:30 on Monday. Hmmm. I expressed my concern about the late time, since I knew there would be eating and drinking restrictions - these just don't work well with diabetes. But since the restrictions were only 6 hours prior, I knew how to address this through a modified eating plan and lowering the amount of insulin dripped through my pump. All good.

And then Monday arrives. Linda and I head to Boston. Labs were first on the agenda at 10. Blood sugar a bit high as I had planned. Good. 10:30 comes and goes. We're still in the waiting room. 11:30 comes and goes. Still in the waiting room. I check at the desk. "You'll be soon. Labs take about an hour." What??? Why wasn't I told this? My impatience is rising and Linda is trying to keep her cool to keep me calm. Noon arrives - hey, what's going on??? We're still in the waiting room! I check at the desk again and tell her that my blood sugar is now 124. Still ok, but I am beginning to worry. If my blood sugar drops, what will happen? Before surgery, I can't have anything to eat or drink, so I cannot take care of a low blood sugar.

Finally we head downstairs shortly after noon. One o'clock: blood sugar 59 - not good at all. (normal blood sugar is 80 - 120). The nurses - yes, that's plural - didn't know what to do with me. I was stunned! "Why don't you lower your basal rate?" they suggest. "I already did. I am getting very little insulin in me right now." "Ok, you'll be going in soon." And off they go. I am furious, but I lay back, trying to rest, trying to remain calm.

1:45. Now my blood sugar is at 45 and I am completely beside myself and, yes, I made a bit of a scene. I was crying, I was yelling. The nurses were still puzzling. I told them to get a glucose drip into me! "Hmmm,should we?" I told my sister I was leaving. I sent an email (iPad always in hand) to my DF nurse to tell her I was leaving. I was ready to leave when the PA came in and said "Get her on a glucose drip!" and apologized profusely. Soon after I was in 'twilight' and my Hickman was in place.

We arrived home at 7pm, rather than the anticipated 2pm. It was a long, upsetting, and very frustrating

It did, however, remind me that my pocketbook needs to be well stocked before I am admitted to B&W next week. I must rely on others for my cancer treatment, but I will strongly resist relying on others for my diabetes care.

And today, Linda and I are sitting in the Kraft Family Blood Center, awaiting more lab results to see if I have enough stem cells to collect. We've been here since 7:15 am. It looks like we have another long and potentially frustrating day ahead of us. Fortunately, we have books, games, crocheting (Linda), and other sundry items to keep us busy - and we have a hotel room for tonight.

Lord, grant me the serenity to accept the things I cannot change.

The new look

Not so bad, but where did all that gray hair come from???

Macy's Parade balloon

That's what I looked like when I first saw myself in the mirror the day after stem cell mobilization.  Overnight, I gained 9 lbs!  So much saline and various drugs had been pumped into me during mobilization that I swelled up like a balloon.  I wanted to cry, but I was just too weak to shed even a few tears.

Cytoxan is the drug of choice for stem cell mobilization.  From my various conversation and readings:  Cytoxan kills both cancerous and healthy cells; it suppresses the immune system.  It causes loss of appetite, feelings of nausea, weakness, a general feeling of unwell, hair loss, stomach discomfort - should I go on?

To top it all off, on Saturday I was to drink 2 liters of fluid (didn't and absolutely couldn't happen), start an antibiotic (thankfully, I got it in me prior to the start of the side effects), and try to walk 30 minutes (also didn't happen).

Needless to say, it was a very unpleasant weekend :-(

But Sunday was better than Saturday (thanks to 2 more drugs) and Monday is here and I'm better than I was on Sunday.  I ate a little breakfast, had a cup of tea, and took a little walk with Mom.  And I've lost all 9 lbs.

As mentally, physically, and spiritually strong as I believe I am, I must admit I'm a little scared.  A week from today I'll have a Hickman line placed in my right chest and 2 weeks from today I'll have my first of 2 doses of Melphalan.

I have quite a journey ahead of me.  I am grateful you are traveling with me.

T minus 11 hours to mobilization

I began my day as I have been doing most days - 7am Mass, followed by the rosary at 7:30, then off to work.  Today was a special day, though.  Mom, sister Linda, and son Joseph joined me for Mass and rosary, and then members of the rosary group joined us as Father Joe and Deacon Mike offered me the anointing of the sick.  It was a moment I will cherish for a long time to come.  I felt full of grace and healing.  And it prepared me for tomorrow: stem cell mobilization.

Tomorrow will begin with Mass and the rosary, followed by the first step in mobilization - a high dose of Cytoxan.  This will be the first time that my chemotherapy will be longer than 40 minutes.  In fact, it will last about 8 hours.  Linda will be joining me, though I'm told I may sleep quite a bit due to the anti-nausea drugs.  Still it will be good to have her there and we have a few games and books packed just in case I'm not sleepy.

Following chemo will be a 10 day round of strong antibiotics starting Saturday; Sunday will be the start of 10 days of neupogen shots.  We're on our way to recovery!

One other thought before I close:  if one believes in such things as signs and omens, as I do, then one must believe I've had yet another positive sign this evening.  In my yard, undeterred by my windchime and enjoying the bird seed was this big creature:

In Alaskan culture, a friend told me the bear is the sign of strength and determination, as well as a strong heart and intuition.  And the bear in my yard was a big bear!

My anointing was a good start to my day and the visit from the bear was a good end to the day.  My faith and intuition tell me all will be well.

Update to Kindness of Strangers

A few weeks back I wrote about the kindness of strangers.  In that blog I wrote of the woman who drove me home and our discovery that we both had cancer, she having been just diagnosed.  Well, I decided I would order for her a medal of St. Peregrine, the patron saint of those with cancer (Catholic tradition).  I also ordered her a prayer book and oil blessed in the name of St. Peregrine.  When these gifts finally arrived, I wrapped them and drove to the grocery store where she worked to drop them off.  Jo wasn't there.  A woman behind the counter said Jo would be coming in on Thursday.  Since I knew I couldn't be there on Thursday, I asked if I could leave the gift bag for her.  "Sure," she said.  "I'll make sure she gets it."  What she didn't say is "Sure, I'll make sure she gets it when she comes to pick up her last paycheck on Thursday."  That's right - the grocery store fired her!!  They fired her!!  They told her they needed to hire more full-time employees, so they had to let her go since she was only part time.  Part time for 5 years!  I was stunned.  They couldn't see this lovely woman through her crisis??  It made me sad and it made me angry.  And I won't stop there again.

Tomorrow Jo has her mastectomy.  My prayers and good wishes are sent her way.

Consent Day

Yesterday was my day-long visit to Dana-Farber.  It was a very long day.  I fell asleep 5 minutes after we started the drive home.

Overall, it was a very positive and encouraging day.  Dr. Anderson continues to be impressed with my rapid and complete response to the treatment.  He noted that it bodes well for my living a long life.  To quote him:  "I think, even with the myeloma, you will live as long as you would have without having developed myeloma."  That was excellent news!  Should I have told him that my paternal grandfather lived to 91 and my Uncle Joe lived to 95??  I always believed I would live as long as Uncle Joe.

My day started with an appointment with my transplant nurse Muriel and Dr. Anderson later joined us.  Muriel was very thorough and explained each day in detail.  The good news:  I may not be on a severely restricted diet for a year!  Eating processed food for a year was...unappetizing to me.  The bad news:  I probably won't lose the anticipated 15 lbs, but maybe only 7lbs.  I almost called the transplant off when I heard that!  Hey, if I'm going down that long dark road, I want to be accompanied by some good weight loss!

But seriously, after talking with Muriel, I feel better about the Cytoxan.  As long as I start drinking 2 liters of water a day, the side effects should be minimal.  The downside, though, is that I will be wearing a mask earlier than I thought.  I thought I'd be wearing a mask maybe after the stem cell harvest until I arrived at the hospital.  Unfortunately, the mask goes on August 5th, after the Cytoxan.  That means the following week I will need to work from home, not the office - definitely not in my original plans.  I can still go to morning Mass, though, if I sit in the empty front rows and wear a mask.

I also feel better about the harvest.  I don't need to sit perfectly still since they will be drawing blood from my Hickman rather than my arm.  I even feel a little better about the Melphalan.  I'll have a few days of no side effects - I might even make it to my birthday!  Then it goes downhill rather rapidly for a week.  Anyone ever swallow razor blades?  She said it may possibly feel like that as I try to down my 2 liters of fluid a day...and as I resist the urge to....never mind - it's  ugly.  Really ugly.  But a week later, I'll feel better :-)  I can make it through an ugly week! (would someone please remind me of that when I start to whine??)

After Muriel and Dr. A, I had a lab appointment.  Remember in my last posting I wrote "what would a day be without a lab test"?  Well, this was quite a lab visit:  26 vials of blood were drawn.  Yes, that's right, no typo - 26 vials!  Holy moly! (Holy moly?? That's lame.  Batman or Robin would have something much more creative to say).  As I saw the lab nurse walking toward me with the tray of vials, I assumed she was restocking her cart, but no, they were all for me. Every last one of them.  And she couldn't access my port, so it all came from my arm - and you know how my veins feel about that!

A visit with the social worker (she said it seems like we have a good support system. Thank you very much, to all of you!) and a pulmonary function test (Dr. Weil and your breathing CD helped me through this) and a bit of waiting around in between and we were done.  Start time at D-F:  9am.  End time:  4:30.  26 vials in-between = long day.

And now the counting starts.  T minus 9 days to 'mobilization.'  I'm ready!

Upcoming dates

Yesterday was my last day of my regular chemo!  The chemo was effective and had few side effects.  How fortunate I have been!  Truly, how fortunate I have been.  And now I have time to focus on good eating, exercising, and settling in, if only briefly, at work.  No more worrying about drug-induced insomnia; no more worrying about drug-induced swollen legs and feet; no more worrying about drug-induced....wait - there's actually no more worrying about drugs!  I'll have more time, too, to prepare myself for the next phase of treatment:  stem cell transplant.

Some upcoming dates:

July 25th - 'Consent Day' at Dana-Farber, a full day of information exchange, conversation, tests (what would a day be without lab tests??), and meeting my entire healthcare team

July 30th - Mom arrives

August 2nd - sister Linda arrives

August 5th - 'Mobilization' (the beginning phase of the stem cell process) begins with a full day in the chemo chair with a new and more powerful drug - Cytoxan, meant begin the demolition of my immune system.  A bit more scary than what I've received thus far.

August 6th - Levaquin, a broad spectrum antibiotic, starts...hmmm, don't know for how long.

August 7th - the beginning of 10 days of injections of neupogen to boost the production of my stem cells.  Thankfully, I can give myself the injections since the needle is similar to the insulin needles I used for so many years, so I don't need to worry about traveling to the doctor's office.

August 15th - the out-patient placement of a Hickman line under my right chestbone.  The Hickman line has been described as 'garden hoses.'  Unlike the implanted port on the left side, the Hickman will protrude and have 2 'garden hoses' extending from it.  Now won't that be an interesting sight??

August 16th - the first harvest of my stem cells.  I heard that I must sit perfectly still during the harvest.  I don't know how many stem cells need to be harvested, but I understand the number is in the millions.  Also out-patient.

August 17th - more harvesting if needed

August 20th - I'll be admitted to Brigham and Women's Hospital.  I'll have my own sterile little bubble room.  Nothing can enter the room without the item being wiped down, and all visitors must wear a mask and gloves and be healthy.

August 21st and 22nd - Melphalan days, which I'm calling demolition days.  I'm not looking forward to these days.  No, I'm not looking forward to these days at all.   Though I have escaped serious side effects from my regular RVD chemo, melphalan will be considerably less kind, but it will seek out and destroy any myeloma cells hiding in my body.  It will all but destroy my immune system, too.

August 23rd - my stem cells come home!  My stem cells will be infused back into me at some point during the day in a very short procedure - we're talking 15 or 20 minutes!

September 7th - my anticipated hospital discharge.

There are many more details to add, but I wanted to let everyone know what my schedule will be like in the coming month.  I'll update again after my July 25th Dana-Farber appointment.

Until then, it's summer and the days are perfect!  And I'm going for a tiny, little, very small, no-steeper-than-my-driveway hike!  The beat goes on :-)

News of the day

Blood work - normal
Skeletal survey - normal
Bone marrow biopsy - normal

Yes, those were my results from today!  No multiple myeloma present in my body.  I'd been having normal blood work for the last few weeks, so that wasn't a surprise.  But the latest bone marrow biopsy, well, that was a surprise.

You're probably wondering what this all means.  Me, too.  Hmmm.  The PA said I had outstanding response to the treatment and I'm in remission.

Do I still need the stem cell transplant scheduled for August 20th?
Yes.
I'm not cured?
No, we're hesitant to talk about 'being cured' when it comes to multiple myeloma.
Then why is everything normal?
Because you had an outstanding response to treatment.
Hmmm.

I think it's because grace is shining on me.

The kindness of strangers

Something unusual happened to me yesterday, but I think it was something meant to happen in the greater plan of life.

I had met a colleague in the parking lot of a small local plaza.  I had ended my position as treasurer on a non-profit board and was delivering my files to the new treasurer.  I parked a few rows over from her, not seeing her at first, grabbed my filebox, my keys, and my debit card, thinking I would treat her to coffee and a pastry as we reviewed the role of treasurer.  I think she planned to just take the files and run, ready to assume her role.  However, as I began explaining the paperwork to her, she said, "Wait, let's put that filebox in the backseat of my car and we can look at the files from there." Ok, no coffee and pastry.  I slid the debit card into my back pocket, placed the filebox and my keys on the backseat, and began my tutorial.

An hour later, still coffee-less, we finished.  She drove away, I went to get my long-awaited coffee (and I did skip the pastry...really!), walked back to my car and - "Where are my keys??"  I looked under my car, I looked in the parking spot where we exchanged files, I went inside the coffee shop - no keys.  Oh boy.  This was going to be a problem.  My cellphone was in my locked car.  My wallet was in my locked car.  My house was 5 miles away.  And I was wearing $2 flip-flops.  And it was hot.

Hmmmm.  What to do?  I asked a lovely old lady, sitting outside of Dunkin' Donuts, if I might use her cellphone.  After explaining my conundrum, she loaned me her phone.  I called home once, twice, thrice....no answer.  Now I knew my son Joseph was at home, asleep.  Joseph, however, has the gift of solid sleep that I do so envy.  He often has to be shaken awake.  Oh to sleep so soundly!!

There seemed to be no choice but to take my coffee and walk.  But should I get a pastry, that was the question!  Back into Dunkin' Donuts I went and got a bagel.  I walked to the end of the plaza and decided to go into the small grocery store for a bottle of juice - can't be having low blood sugar on a 5 mile walk home without a cellphone or identification.

In the grocery store, I was bemoaning my situation to the cashier, and the manager and another cashier overheard me.  The manager offered me the phone.  Once, twice, thrice I called home....no answer.  The manager said, "You can't walk home in this weather.  Jo here is going to drive you."  Jo is a woman maybe 10 or 15 years older than me and she offered to drive me home.  It wasn't the end of her shift, but the manager told her to not go off the clock, just take care of the customer.  The kindness of strangers.

As we drove, I was explaining what had happened to my keys.  And then I said something I never say to someone I don't know (and sometimes I don't even admit this to people I do know!), " I just finished my chemo so my head is a bit fogged."  The car slowed down and Jo reached over and squeezed my arm.  With tears in her eyes, she choked out, "I was just diagnosed."  Like me a few months earlier, she couldn't say cancer.   We talked the whole way home.  I offered her support and comfort, suggested she pray and everything would be as it should.  Told her that it was ok to cry, that crying isn't a sign of weakness, told her that I cried a good part of the day before.  You can cry and still be strong.  Cancer is scary but she's not alone.  We're never alone.

In my driveway, she hugged me and said somehow, strange as it was, she loved me, and it was meant for us to meet.

At home, Joseph was awake and had called his father to find out why the grocery store kept calling.  "Did mom order something?  Was I supposed to pick up something from there?"  Yes, he had been awake for these grocery store calls but didn't answer the phone.  I, too, think it was because Jo and I were meant to meet.

8,200 out of 9,400

As you may remember from an early entry in May, my daughter Sarah, niece Samantha, and Sarah's co-worker Kokeb entered the Warrior Dash, a 3 mile race during which many obstacles were thrown in their path - anyone for jumping over fire, climbing under barbed wire, or running through a lot of mud??  Sarah choose to do this as a fundraiser for the Multiple Myeloma Research Foundation.  She raised $720 and those of us with MM are thankful.

The girls had a great time!  During the first day of the event, 9,400 participants from New England and beyond ran the race, with several hundred starting the course every half hour.  Sarah's group started at 5pm, just in time for the course to be extremely muddy!  The race started with an uphill run and ended with climbing up and over a high wall, sliding down a nasty hill, and scooting over a rope bridge.  Did the girls mind that they finished 8,200 out of the 9,400?  Not at all.  With an upbeat attitude, they said,"Hey, that means 1200 people finished after us!  We beat 1200 people!" They said it was the most fun they've ever had :-)  Enjoy the before and after pictures below!  Warrior Dash

Samantha, Sarah, and Kokeb ready to go!

Joseph, Joe, Cindy, Samantha, me, Sarah, Kokeb

The mud!

The last obstacle before the finish.

True Warriors :-)

Believe it or not, Warrior Dash collects and cleans donated
Warrior footwear to donate to charity.

Yes, cancer sucks, but events like the Warrior Dash
make it possible to make create an awareness about
Multiple Myeloma.

99% Complete Response!

That was the good news I received from Dana-Farber today! After just 2 full rounds of treatment, followed by a half round, and just into my 4th round, I've had a great response!  So this, round 4, is my last round. Wow!!!!  No more tingling face!  No more insomnia!  No more digestive issues!

Next step in this journey: I'll be back to D-F in a few weeks (not scheduled yet) to learn more about stem cell transplant. The plan thus far is to start a new drug regimen later in July to boost the production of my good cells, so that my stem cells can be harvested a few weeks later. At some point after that, I'll head back again to D-F for the transplant. The transplant will be the scary part. I just have a basic idea of the process - you know, though, that I have been reading about it prior to today! - so I have only a general understanding of the procedure. I do know that it requires some heavy duty hair-falling-out chemo right before the transplant and then a lengthy (3 weeks) hospital stay.  Good thing my mother will be here for the summer!

And Dr. Anderson?  It was pretty clear to me why he's so well-respected.  I am grateful that I reached out to him to ask for help.

I'll keep you posted as I learn more about the transplant and the dates.  For now, I thank you for your prayers, support, and kindness.  I am continually uplifted by family and friends.  And I bow my head and give thanks to the good Lord for this blessing.

And Go Bruins!  Last game of the Stanley Cup, tonight, 8pm, NBC.

Round 4, Week 1

Week 1 of Round 4 is coming to an end and I had no chemo this week.  It seems my ANC (Absolute Neutrophil  Count) is low...again.  It was also low during Round 3, Week 2, so I had no chemo that week either.  Very, very annoying to miss 2 weeks of treatment.

The ANC is a measure of the neutrophils - a type of white blood cell - present in the blood.  Neutrophils are part of the body's infection fighting team.  If my ANC continues to drop, I'll become neutropenic and you may recall that being neutropenic gets me a 'Put on a Mask and Go Directly to Hospital, Do Not Collect $200 If You Pass Go' card.  I've picked that card twice already and I'm not picking it again, thank you very much.

I think this has to do with my diabetes again.  At the end of Round 3, Week 2, my ANC had improved, but since I was due for surgery for the port, the docs decided to skip treatment - the chemo is a real ANC buster.  I think that was a good decision.  Since the surgery (did I tell you that was not so much fun?), my ANC has remained low.  My theory:  it always takes longer for me, with diabetes, to heal and recover.  It doesn't matter if it's a cold, the flu, a scrape on my knee - it just takes longer.  So I think my ANC is taking its time to bounce back.  My doctor disagrees.  He thinks my bone marrow was battered a little too much and needs more rest time.  I agree with that, but couple it with my diabetes theory.  Either way, I hope my ANC has improved by next Tuesday, when I'm scheduled for more lab tests and chemo.

Also on the agenda for next week:  my trip to Dana-Farber on Wednesday. My appointment starts at 11am, and I think I will be there until perhaps 3pm. More blogging to come!

One more agenda item for next week:  Game 6 of the Stanley Cup finals is Monday and Game 7 (there will be a Game 7!) on Wednesday.  Both games are on NBC at 8pm.  Go Bruins!

New to Google blogger:  on the right side of this page you will find a new 'gadget' called Follow By Email.  Please enter your email address there to receive an announcement of when this blog is updated. In a week or so, I'll be deleting the Google Group I created that announced my blog updates. The Google Group was a convenient way to send updates before Google created this new gadget, but my daughter Sarah mentioned that sometimes I forget to send an update message.  Oops!!

Testing 1,2

I recently wrote this on my daughter's Facebook wall: Life is full of tests and I hope to continue to be an A student.

I've had some life tests since my diagnosis, but a few recent tests come to mind:

In an earlier entry, I mentioned that my niece Maddie was participating in the American Cancer Society's Relay for Life at her school. Her team raised $3,000 and the event raised more than $95,000!! A very successful event! Maddie invited me and my family to attend the opening ceremony and we were happy to join her. Attending the event, however, was a test for which I was unprepared. As we approached the school on the day of the event, we heard the announcement that registration was closing in 15 minutes. My sister-in-law turned to me and asked if I would like to register in the survivor category and join the ceremony. Survivor??? Me??? Cancer??? Me??? I had anticipated attending a fun high school event that was organized to raise money for a very good cause and suddenly I found myself face-to-face with the cold, harsh reality of my life.  How could I be so unprepared? There were many survivors in attendance and there was talk of those who had died from various forms of cancer.  I felt numb.  I cried.  I stunned those who were with me.  In the end, I rallied and walked a lap or two around the track, feeling the comfort and love of those with me.  It's strange how I can live with cancer day in and day out, go to chemo, take my Revlimid, do everything needed to keep me healthy, and yet still have moments when I feel completely shaken to the core at the reality that I have cancer.

Grade for that test:  C (F for being unprepared + A for rallying = C)

Another life test came yesterday.  I was recalling a helpful hint a friend (and co-instructor) was giving as we were preparing students in an accelerated graduate course for an upcoming test that required considerable reading. She said that you can get the gist of a reading if you read the first line or two of a paragraph and the last line or two of a paragraph throughout the reading. You don't come away with a thorough understanding of the material, but you get...well, you get the gist of the material. This came to mind as I was resting at the one day surgery center, where I had a port implanted under my skin. (My picc line was removed a week or so ago). In preparing for having yet another medical device in my body, - yes, a life test - I spoke with the nurses and a few friends who, in the past, have had ports. I read the first few lines of these verbal paragraphs:

"It's wonderful to have a port, so much easier" and "There is a little discomfort when the port is first implanted."

Then I read the last few lines:

"Take it easy especially today and tomorrow" and "Don't do much of anything other than rest" and "Here's a prescription for Vicodin."

Vicodin??  It was pretty easy to get the gist: the port will be great after it hurts like hell. Ouch!

Grade for this test:  A for accepting a new medical device in my body, A for taking it easy and getting rest, B+ for whining about the soreness.

Round 4 of chemo starts Monday.  I am anticipating good lab test results and then I will get an A for celebrating!