Lady Godiva

I have been wanting to blog about my IgE report that I was waiting on from my labs when at Tampa last week.  This is the measurement Dr. Ochao (my transplant doctor) uses to follow my Myeloma.  If you remember from my last post, the IgE test before my transplant for 50,000 plus (couldn't measure it because was off the chart), then IgE in December was 9800.  Welllll, drum roll please, my IgE results from my labs on February 6 showed 434.  This is really going in the right direction.  The normal result they look for is 214 or less.

Today I had an appointment with my oncologist, Dr. Sarriera.  He will continue to monitor the IgE results and the free kappa and lambda light chains.  These light chains are indicators of Multiple Myeloma if they become abnormal.  This would show up in my labs.  This was one of my concerns.  How will they know if my Multiple Myeloma is back?  We discussed my fear of this today.  He said I will have a relapse.  When?  Could be six months, a year, three years, 10 years, 20 years.  He has several patients that have been free of Myeloma for 10 years, 12 years, 20 years. Guess we will deal with it when this happens but it will always be in the back of my mind as to WHEN?  Abby,
Dr. Sarriera's nurse, told me it will eventually not be on my mind so much.  Just takes time but that is okay.

Meanwhile, to get me to full remission (I am in partial remission now), we will start the Revlimid again.  Very low dosage.  I will be praying that I do not have a reaction this time as this is the only chemo drug that is used for maintenance beside Velcade.  He doesn't want to go the route of Velcade because that is what caused my neuropathy.  Since Revlimid is a very controlled substance, it may be a week till I will start taking it.  So much red tape to go through to get it released to me.  Dr. Sarriera said that he has had patient go into full remission with in six months of the Revlimid and others have taken up to a year or more.  I will take the Revlimid for 21 days and then have 7 days off, if I am not allergic to it.  This will continue the rest of my life.  There was mention of me going to an allergist for desensitizing if I am allergic to it.  This would have to be in Tampa.  UGH!!

I will have to do labs about every 2 months once I am on the Revlimid schedule.  And have to see Dr. Sarriera about every 6 to 8 weeks.  This will continue until forever too.  Guess Kristi or Matt, or maybe even Sasha or Ellie, will have to drive us to the Cancer Center once we are no longer able to drive.  ;)

I will continue to take Acyclovir (virus protection pill), Lyrica (for my neuropathy), Statin (for cholesterol), vitamin B12 complex and calcium with vitamin D.  Also, will continue the Zometa drip (helps strengthens my bones) every 3 months.   He wants me to start taking a low dose aspirin daily once I start taking the Revlimid.  Even after months of pill taking, I still hate to take pills.  Never really took a lot of pills before this "C" came in to my life other than an occasional Aleve and my cholesterol pill.  Well, at least Bill doesn't have to cut them in half any more!!!  He did this with several of them so I could swallow them without gaging.

I have been feeling pretty good.  Getting back to my life.  It's a different life but that too is okay.  It will never be the same as before cancer.  It's a more appreciative life.  A more "me" life.  A more "Bill" life.  A more 'family" life.  I will get back to my life but a life after cancer will be different.

We have had some visitors from PA.  Sandy and Denny are here for 5 weeks. Several which have already gone.  Didn't see them the first week.  Sandy's Dad and friend were here.  Second week Denny was sick.  Finally was able to go over to their condo for dinner last Saturday night.  Then again tonight after my doctor's appointment.   We hope to get together several more times before they leave.  It all depends on me and how I am feeling.  Hate that but it's how it has to be for a while.

Ventured out to Kohls with Bill the other day.  I was able to shop for about an hour. (I used spend hours there with Louise or Nancy or Sandy at one time.)  Needed some new clothes as I lost around 26 lbs since all this started.  I didn't try anything on there because dressing rooms are not clean.  I am becoming a germaphobic.  But my immune system is still not fully recovered and I am not taking chances.  So, of course, I had to return things that didn't fit.  So back I went again.  This time Sandy was my driver.  We were there a little over an hour and I was ready to go.  Tiring.  But these little adventures help with my strength building.

Now if only my hair would grow faster.  When I look in the mirror and see this bald head, I feel like crying but instead I just start singing - her long blonde hair, lying on the barber's floor, she doesn't need it long anymore, Lady Godiva or hair, long beautiful hair.  Makes me laugh because I didn't have long blonde hair or long beautiful hair and also I can't sing.

Quote:

Sometimes life is about the ability to believe in where you are going even when you are not sure what lies ahead.