Wednesday, February 9, 2011

The Diagnosis

I promise you, reader, you will either absorb every number I am about to throw at you in an attempt to diagnose the severity of your cancer or your loved one's cancer (as I did) or the beginning of this blog will bore you completely. 

December of 2009.  Kirk is lying in a hospital bed at the Cleveland Clinic.  His MM presents as the following:  

1)  Advanced bone disease (multiple lesions in his spine, femur, hip, skull, and rib bones). 

2)  Hypercalciema at 13

3)  Anemia hemoglobin at 8.0

4)  B2-M at 3.9

5)  Monoclonal Protein, Serum 4120

6)  IgA, Nephelometry 4330.0 H

**We find out in December of 2010, one year later, that Kirk is positive for the chromosome abnormality t 4;14.  This is an incredibly important part of the puzzle that we did not discover early on due to the effectiveness (or should I write the ineffectiveness) of different bone marrow biopsies performed by different facilities**

The doctor at the first facility gives Kirk steroids to control the bone damage and tells us that he has 3 to 5 years to live.  We feel devastated.  I begin falling down a black hole that I do not have the life skills to climb out of yet.

I wake up in the middle of the night by the hospital bed and listen to Kirk and our hospital roommate praying together.  Our roommate's name is Curtis, and he is in a wheelchair by the side of our bed.  He lost the use of his legs during his teenage years due to a gun shot wound to his spine.  They are thanking God.

A friend of the family who lost his wife to ovarian cancer tells me that things will get better when Kirk begins treatment.  He tells me the treatment will give us consistency and put us on the path of hope again.  I nod to him on the phone and try to listen, but my mind is not ready to accept this reality.

I discover that there is a pod of computers on the eleventh floor of the hospital, and I decide to sneak away while Kirk is sleeping to learn more about this cancer.  As always, my favorite habit of reading and studying begins to occupy my mind with rational thoughts.  I begin to see the things that I need to do to take action.  So, I make a list of duties that I need to complete:  call our insurance company and get information about
coverage, research the best treatment facility, call that facility and make an appointment, get Kirk home so he can begin healing in his own bed.  I look at my small list and feel better, stronger somehow.  I do not realize it, but I have taken the first step in the fight.

A few days later, Kirk is released, but unable to walk due to four compressed vertebrae.  We come home, kiss our baby, and I put up our Christmas tree in an attempt to make our house feel normal again.  A concept I read in an article about MM regarding "the new normal" pops into my mind every now and again.  I do not want a "new" normal, I want our old normal again, and I am determined to make this happen one Christmas ornament at a time.  I install handicapped accessible hardware in our bathrooms and call a home health care agency in our area and confirm that we have coverage if I need at home assistance for Kirk.  Thank God, things have never come to that. 

After discussing the pros and cons of different treatment centers, we decide on The James Cancer at OSU because of many reasons, but primarily because it is covered under our insurance plan and its proximity to our home. 

And wouldn't you know it, our good friend was right.  The easy rhythm of the treatment schedule does soothe us into a better state of mind.  We are finally taking action and it feels really, really good.  The treatment lulls us into the acceptance of our "new normal."


  1. Tiffany,
    I too am a caretaker for a husband with MM. The numbers and terms you presented are all too familiar now, though a year ago we hadn't even heard of this form of blood cancer. Through other blogs, like Phil's MM for Dummies, we can band together and support one another in the fight. Welcome to the blogging community. The number of young people, with young children, that are being affected by this disease continues to shock me. We will add your precious family to our prayers. Our blog is

  2. Hi Tiffany,
    My name is Liz and I followed the link from Phil's MM for Dummies.
    I'm one of many caregivers to my darling, precious and phenomenal aunt that has MM.
    She's on day +6 of her 1st SCT and doing amazing.

    Big props to you for starting your blog. I'm sure you'll draw great strength from it.


  3. Hello there Tiffany - another caregiver here from Phil's blog. My husband was diagnosed in July 2007, "too old for" a SCT, now about to start "drug of last resort" Revlimid. We are in the UK. Good luck to both of you! :)

  4. Hello, sorry this has happened to you. Good luck with the cancer treatment and dealing with the compression fractures. My wife also has compression fractures like too many myeloma patients. Hopefully you will have some good success with these.

  5. I too have high risk mm. I was diagnosed in May2003. I have treated at UAMS with Dr.Barlogie since 2004. I have been in CR since my second SCT. Their success with MM is well documented. Read The Myeloma Beacon today...there is mention of UAMS and and their recent success with high risk myeloma. I have also enjoyed Phil's posts and I read Nick's blog. He provides so much medical info.....he probably knows more about MM than most general oncologists/hematologists! I hope your husband is on a strong maintenance program. I wish you and your husband the very best of outcomes. He is very fortunate to have you as his wife and caregiver. I will keep you and your husband in my prayers.

  6. Thank you everyone for your supportive comments.
    I started this blog hoping to connect with others affected by MM, and I could not be more happy with the results. Please stay in touch with us and share your stories. I greatly appreciate that you shared your stories with Kirk and I.