Thursday, September 6, 2012

My Mom's Battle


If my blog is supposed to reflect what is going on in my life then I have to write about my mom.  I have debated about whether or not to write this - because I usually don't post about things that are too personal.  But I decided that if this is a true record of personal and family history - then I will look back and be grateful that I opened myself up a bit regarding this situation that is currently all-consuming.

My mom has cancer.  Multiple Myeloma - a cancer of the bone marrow (in the same class as leukemia).  She was diagnosed in 2004.  There is no cure for this type of cancer.  It is the type of cancer that is treated with radiation and chemotherapy until it is under control for a period of time (remission) until it eventually it comes back (relapse).  It is the type of cancer that over time becomes resistant to treatment.  At the time - summer of 2004 - we were told the prognosis was 3-5 years.  My mom's grandmother had lived into her 90's.  My mom's mother had lived into her 90's.  We had expected that my mom would live...into her 90's!  She was 68 at the time of diagnosis.  We all felt like we hit a brick wall.

That was 8 years ago.  For 8 years my mom has been battling.  Battling the cancer with my father at her side every step of the way.  Their lives were immediately overwhelmed with medicine, doctor's appointments, MRI's, CAT scans, labs, side effects, walkers, hospitalizations, oxygen tubing, allergic reactions, more medicine, radiation, clinical trials, talk of stem cell transplants, referrals, biopsies, wheelchairs and many other things related to cancer.  The first treatment option was Thalidomide (an oral chemotherapy agent) - the very same drug that was used back in the 1950's to treat morning sickness - until they found out it caused devastating birth defects.  Fortunately the Thalidomide was effective and reduced the M-spike (a myeloma protein in her blood indicative of cancer activity) for a period of time.  My mom was treated with Thalidomide off and on for about 4 years.  The side effects of the chemotherapy really took their toll.  Although she did have periods of a few months at a time where she would feel good, there would also be endless months of extreme fatigue, pain, weakness, weight loss, depression and anxiety.  I try to go to as many doctor's appointments with her as I can and will often email family members with a report of my mom's status.  I have reviewed those emails and it is heart wrenching to relive those memories of her suffering.  Her doctor eventually discontinued the Thalidomide because of the side effects and because my mom developed a dangerous allergic reaction.

Revlimid was our next treatment option - another oral chemotherapy agent.  Like with the Thalidomide, her cancer responded at first.  But not without the annoying side effects that accompanied the medicine.  My mom got weaker, more tired and seemed to develop one health problem after another.  But when the M-spike decreased and her cancer was under control - we had many good times.  And we treasured them - the times when my mom felt well enough to be out and about.  Except for during the toughest times, my mom continued to go to lunch with her friends, attend her club events (even give book or other presentations on occasion), create her lovely pressed flower pictures, work on her personal history or the personal history of her father, host family dinners and parties, attend family dinners and parties, attend and help to plan our family reunions in St. George and come to as many special performances of her grandchildren as possible (all with the never-ending love and support of my father).  She lives with a grace and passion that is remarkable.

After Revlimid became ineffective (which was a long drawn-out process) she switched to Velcade (an intra-venous chemotherapy).  She tolerated that for a while but it too became ineffective.  It seemed we had run out of options.  The doctor was considering trying the Revlimid again.  He even suggested we look into a stem cell transplant again - something that we had researched and declined several times over the years.  Recently my mom was hospitalized for almost a week with urosepsis and hypotension.  It was frightening for all of us how precarious her health was during that hospitalization - especially because she was doing quite well in the weeks preceding the illness.  But sadly while we concentrated on other aspects of her health, the cancer was growing unchecked.  One week after she was discharged, an MRI revealed two tumors (plasmacytomas) dangerously close to her spinal cord.  She was admitted to the hospital a second time for radiation therapy and pain control.  It was there that we learned that the growth of these tumors - outside of the bone - was indicative that the cancer was more aggressive.  And the doctor advised us to be "cautiously optimisitc" and he told my mom to "get her things in order."  These are words no one wants to hear.  These are the words we have dreaded for 8 years.

But she battles on.  She will continue receiving radiation therapy and then she will start a new chemotherapy agent that was just approved by the FDA in July!  Carfilzomib.  We are putting our hopes in this medication.  What are we hoping for?  Time.  That is what my mom keeps saying and that is what we all are feeling.  Even though we have had 8 years to prepare for this - it doesn't make it any easier.  It is all-consuming.  It consumes my thoughts, my actions and my emotions.  So much so that sometimes I feel like I can't breathe.  But we have hope.  We have faith.  We believe in miracles and we know that anything can happen.  Last week in church we were singing "How Great Thou Art" and I had an overwhelming witness of God's power - His divinity - His greatness.  That knowledge does not take away the pain I am feeling or will feel.  That pain is a testament to the love that I have for my mother.  But I know that someday all of this will be out of our control.  It will be in God's hands.  And I will have to accept it.  But I want so desperately for that "someday" to be far away from now.  


My mother, my father, my siblings, my husband and my children and many family members and friends are enduring this trial as acutely as I am.  I do not mean to minimize any of their feelings by posting this.  Especially my mother and father - who together have borne the weight of this devastating experience with perseverance, patience and courage.  I love them.             


9 comments:

Rachel said...

Thanks for sharing this, Emily. It's such a gift to read something so heartfelt and loving. Sending you and yours our love and prayers.

Kip said...

Glad you wrote this, Emily. It is a big part of our lives that should be paid attention to and recorded.

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squeezeme said...

My heart if tender as I read the details of your family's journey. You have inherited your mom and dad's courage, grace and patience. Your family is in our prayers.

Suzanne Shippen said...

Dearest Emily,
I just wept for you as I read this. My heart goes out to you and I pray for you and your family that you will feel the love of your Savior that will sustain you through this and help carry you through it.

Kurt Knudsen said...

Thank you Emily for sharing some of the tender details of this long, hard, climb. Your mother is amazing. We love her and your dad. Their love of life, their creativity, their service and friendship have always been treasures we cherish.

oodlesofoversons said...

Emily-reading this brings back way too many emotions for me. We did this for almost 4 years with my mom and losing her was the most difficult thing I've ever gone through. You're right, NOTHING can prepare you for what is to come. But the peace you feel through the spirit is what will get you through the hard days, months, and years to come. I'm so sorry that you have to go through this! Love and prayers sent your way. xo

Julie said...

This is so sweet and real and wonderful. I LOVED reading this! Thank-you for all of it!

Jen said...

Emily, this post is beautiful yet heart-wrenching. I have always heard you speak so lovingly and admiringly of your mom. While I have never met her, I know she is a remarkable woman. I am sure that she has endured the last eight years with great strength and faith. I can feel your love for her as I read this post. Blessings to you and your sweet family.