Tuesday, February 15, 2011

Day 89-The Balance Act of Living With Cancer and Life

Hard to believe I am 89 days post transplant. At times it feels like just yesterday I was in my little "fishbowl" in the transplant unit.  Then again, so much has changed since then.  It is great to be free of restrictions!  Last week was my first full of week of getting back to a regular exercise routine.  Once a week I work out with a trainer to try to build up the muscle that has wasted away over the 8 months.  It amazes me how much strength I lost.  But it is great to get moving again and hopefully that muscle memory everyone talks about will kick in.  I also hit the treadmill.  It is so great to run again.  Although I am running at a much slower pace, I am up to 3 miles!  On Sunday Mike brought me to an Endurance Class.  It was a full hour class split up into 30 minutes of strap suspension training/kettle bell and 30 minutes of kickboxing.  Wow!  Was it ever a wake up call to my body.  But it felt so great to sweat out all the toxins that have built up, as well as punch and kick some of the stress and frustrations that have bottled up inside.   I finished off the day with a beautiful 2 hours snowshoe romp in the woods with a great group of women to support the Susan G. Komen foundation.  Needless to say, by Sunday night my body was done and I was walking around like I was riding a horse all day!  But it was exactly what I needed before the upcoming week.
Diana, Suzi and I snowshoeing

Yesterday I began another cycle of chemo. What better way to spend Valentine's then with my sweetheart in the Chemo Spa!.   I received such a warm welcome from my oncologist and nurses.  After some blood tests I found myself back in the infusion room.  Mike and I settled into our little space and got comfortable while my favorite nurse Leslie got me prepped.  We were there for over 4 hours and I received some fluids, anti-nausea meds, Zometa (a bone strengthening med) and then my Velcade.   Hopefully this next round will help bring down my M-Spike and zap those remaining stubborn cancer cells.

After a great lunch out at our favorite Mexican spot it was time for me to put back on my mommy hat and pick up the kids and go to piano lessons.  While sitting waiting for the lessons to be over I could barely lift myself off the chair.  Fatigue completely settled in and I was wishing the boys were old enough to drive us home.  After going over homework and the looking at the piles of Valentines dumped all over the kitchen table I dragged myself over to the couch.  I literally felt like I had been hit by a freight train.

Fortunately I woke up with some energy today.  Good thing, because Mike flew out to California.  I am trying to slow myself down a bit today, to reserve energy for the week.   I'm am hoping to keep up the exercise, maybe not to the level of last week but keep moving.  I am sure everyday will be different, as I am back on my daily dose of 15 pills.   I am back in the chemo chair on Thursday and then that will be one week done!

This cancer chemo schedule is just going to have to be balanced out with life as a busy mom of four kids with a husband who is traveling.  This is not exactly the part-time job I had in mind, but then life has a way of throwing us curve balls. I guess my next challenge is going to be learning to live with cancer.  Which means balancing the pill, chemo and doctor visits along with kids, homework, cleaning, cooking and carpooling to activities.  When I think about it too much I find myself completely overwhelmed.  But the alternative of being in a hospital bed sheltered from everything and everyone I love (like I was 3 months ago) keeps me grounded.  Life although busy and at times overwhelming is what I love.  I am just trying to take each day as it comes.  Today, I am off the couch and I am not feeling sick.  I got the kids off to school, did some housework and I'm heading out to do some errands.  I might just try to hit the treadmill! But then I think I'll be finding my way on to the couch for a bit before the afternoon with the kids.

Enjoy the sunshine today!

Thursday, February 3, 2011

Day 76-As the snow continues to fall......

The kids are finally on the school bus heading for school.  We have received over 4 feet of snow in the past 3 weeks! The snow is so deep Mike actually snowplowed a path around the house for Flower.  That's true love!   The snow is up to our windows and we can barely see the street.  We live in a wooded lot so the trees look absolutely beautiful all painted with snow.  We have so much snow on our road, that soon I am going to just have to pull out the snowshoes to walk the kids down to the bus stop.  The snow is still falling this morning and we have another storm on the way on Saturday!   I must admit there is something pretty special when the world stops, and everyone is snowed in.  It forces us to slow down.  The past couple of days was spent with my house full of my own kids and friends.  We had sleepovers and wine with our grown up friends all during the school week (how fun and spontaneous)!

While snowed in I was also waiting for a call from Dana Farber with results from my labs that were drawn last Thursday.  I was specifically waiting to hear what my M-Spike number is.  Ready for a little lesson: Multiple Myeloma cells produce excessive monoclonal proteins.  The monoclonal proteins are also known as M Proteins and can be detected via protein electrophoresis, a process that uses and electrical current to separate the various proteins in a sample of blood.  The M protein level is referred to as the M -Spike.  In myeloma patients the M protein is most commonly IgG or IgA.  In my case my protein is the IgG.  Ok enough of the medical lingo, basically this number will indicate how effective the treatment and transplant has been.  Doctors are very cautious and rarely use the word "remission" when speaking about Multiple Myeloma.  As we know, currently there is no cure.  Therefore the goal is to reach a "complete response" from treatment which will hopefully last for several years without a relapse.  A complete response is reached with the M-Spike is at zero.

In June, when I was first diagnosed my M-Spike number was a 2 .0  We got the number down to 0.71 after my 4 Revlimid/Dex, and Velcade treatments.  By the end of October prior to my stem cell transplant we achieved an M-Spike of 0.39.  My doctor was very pleased with this number and was very optimistic that I would achieve a complete response after transplant.  Last Thursday all my other numbers looked terrific.  My immune system has fully recovered about 25 days ahead of schedule.  Which means no more wearing a mask!!!  I also got the thumbs up to start eating fresh vegetables and fruits again.  Bring on the salads and smoothies!   My doctor also once again expressed that he would expect my M-Spike number to be very close to zero based on how well I have recovered.

Well, this gave reason to celebrate!   Mike and I got a babysitter for Saturday night and decided to go out to one of our favorite restaurants in Nashua.  I was finally going out!  The last time I went out was November 14th, so it had been a while.  While Mike was downstairs with the kids and the babysitter, I was upstairs trying to decide what to wear.  Well, an hour later, I was still not dressed, my closet was pretty much emptied out on my bed. Mike came upstairs and found me in tears.  How was I supposed to go out on a date with my husband when I felt so ugly?  None of my clothes fit me the way they used to, I'm bald and I barely even have any eyelashes.  Seriously?  I needed a total makeover.  At this point eating a pizza at home had more appeal than going out in public.

Mike gave me a big hug, reminded me of how far we have come and helped me pick out and outfit and pretty bandanna.  He knew how hard this was for me.  When we got to the restaurant there was a 45  minute wait.  So we walked into the bar to wait and have a glass of wine.  As I walked in, I felt the eyes staring at me and the look of sadness on everyone faces.  I hated all the attention. Can't I just blend in?  We sat in a corner and Mike made a special effort to keep me distracted.  But when we finally got our table, my eyes filled up in tears.  It was so overwhelming sitting there.  Every woman around me looking pretty and feminine.  I felt like I have been stripped of that.  I almost felt like I just landed from out of space.  I felt like I didn't fit in.  Everyone around us was enjoying a night out on a Saturday night, like they probably do every weekend.  It had been so long since we have gone out, my emotions took over, the hot flashes started up and I just felt like running out of the restaurant.  Mike poured me a little more wine and I began to relax a bit and enjoyed dinner.  Although we were home early (by 10) we did it.  We actually went out.   Baby steps.....right?

I finally received a call from a woman form the doctor's office.  She informed me that my M-Spike was 0.30.  How could this be?  I went through the most toxic dose of chemo that wiped my white blood cells to zero, had a stem cell transplant....and I only dropped 0.09.  What the heck?  Talk about a buzz kill.   My heart sunk with disappointment and my mind began spinning out of control.  Did this mean that the whole transplant was not effective?  Unfortunately the woman had no answers for me and I was told the doctor would call me within the next 24 hours.

Dr. Munshi finally called me yesterday to talk over the results.   He knew from my voice that I was discouraged.   He anticipated that I would be in a complete response and I really wanted to believe him.  Unfortunately I had a fairly good "Partial Response".  The number is moving in the right direction (down) just not as quickly as we would like it or anticipated.    I am not a very patient person especially when it comes to something like this.  I have been a "perfect patient" doing all that I am expected to do, following all the instructions and  I am only getting a satisfactory result!

  I begin 2 more cycles of chemo beginning on Valentine's Day.  So I am trying to psych myself up to get ready to be poked again, and have the great side effects of chemo and steroids.  Hopefully my body will tolerate it well.  As we know, every cycle is different.   The plan is  to complete the 2 cycles and then in 8 weeks I will go back to Dana Farber for more tests and another Bone Marrow Biopsy.

 It was a challenge explaining to the kids what a "partial response is".  This is going to be a long journey,   As my mother-in law explained to  me the other night, it is a like a dance.  One step forward a few steps back.  The key is to try to stay positive and keep taking those steps forward.  Please keep me and my family in your prayers.

Stay warm and safe and savor the day!