August 27 marked the four-month anniversary of my sister Deana’s diagnosis.

Our lives are forever changed.  We are still seeking the “new normal,” although I’m sure we won’t be able to define that until Deana is in remission.  So for now, we take each day as it comes.  I wouldn’t define it as the “abnormal,” but rather, the fight: Beat The H*ll Outta Multiple Myeloma, as our slogan goes.

I spent last weekend in Pittsburgh so that I could join Deana for her appointment with her oncologist on Monday.  It is always so good to be with my family, the ones who know me best and love me for who I am.

When I arrived, my mother shared an autobiography written by Deana’s 8-year old daughter, Clare.  (Some of you may remember the escapades of Clare and Aunt Debbie, chronicled in my last article, “Out Of The Mouths Of Babes ^[1].”)  Clare started with the basics, “My name is Clare, I am 8 years old and I live in Pennsylvania.”  As I continued reading, I got choked up, “My mom has cansur.  It is called multiple mieloma and it is a blood cansur.”  She quickly moved on, “I have two brothers….”

As I shared in my last article, I’m glad Clare can incorporate her mother’s illness so easily into her life.  But, I still wish that her sweet little story didn’t have to include something so insidious.  Let’s all continue to fight and bring about a cure for multiple myeloma, for all the obvious reasons.

When we went to Deana’s appointment on Monday, I was armed with our notebook (see my article “The Battle Plan…Or Is It ^[2]” for more details.)  Our youngest sister, Darrie and I spent several hours on Sunday evening organizing the information and updating the various charts.

I tenderly chastised Deana as we drove to the hospital that she must do a better job of record keeping in the notebook.  She responded that she does not see the purpose and asked what we’d do with this – for example, a year from now, would we look back and remind ourselves how awful she felt on a particular day?  It seems that though her training as an architect means she possesses terrific attention to detail, in her opinion, her multiple myeloma battle minutiae are not worth chronicling.

Prior to her appointment, we enjoyed a delicious lunch at a charming restaurant and then we went to the hospital’s wig shop and tried on a few styles.  We had a bit of fun with this and put a blonde wig on Deana, which didn’t suit her coloring, so she’ll be staying with brunette styles.  I’m glad we made some progress in this area while she still has her hair.  Of course, like several other experiences we’ve had on the journey so far, it feels surreal to be watching my 39-year old sister try on wigs because she’ll soon lose her hair as a result of chemotherapy.  Is this really my life?

Deana’s dietician visited with us first, following an email request I made last week that she provide us with some simple documents featuring good meal options.  It is my guess that many of you have also been faced with the overwhelming amount of information covering every facet of living with multiple myeloma.  While the voluminous nutrition information is interesting to read when time allows, it is a lot to sift through.  It will prove easiest for Deana (and our terrific mother, who handles a fair amount of meal preparation) to have a few sheets of paper to work with.  Although Deana was eating well before, I’m glad that we now have a week’s worth of the best choices for each meal.

Next, we had a brief visit with the social worker.  It is my assumption that protocol dictates she must check in.  My interactions with her will make for a wonderful column at a later date.

Then, the man we’d been waiting for!  Dr. Agha arrived, and Deana reported her neuropathy (pain and tingling in the extremities) was really bad.  He decided he’d take her off the Velcade ^[3] (bortezomib) and ordered a bone marrow biopsy (BMB) for Wednesday.

Deana was quite unhappy for a number of reasons, perhaps the greatest was her dread of the BMB.  The one she had while in the hospital was extremely painful.  I asked if there was any way it could be done while I was there, so I could hold her hand and coach her through it, but alas, it was too late in the day.

I did a lot of advance work on Tuesday, emailing the social worker and nurse, along with a phone call to Darrie, to let all parties know that if Deana was feeling anxious, she should be given something to calm her.  She said they gave her some Ativan (lorazepam)…and it felt good.  Her BMB went well, and while this is never a test she’ll look forward to, at least she knows that it doesn’t have to involve pain that defies description.

Through our conversation with Dr. Agha, he learned that Deana’s activity level has been virtually non-existent.  Once this was revealed to him, he shared that several of Deana’s challenges (shortness of breath and lightheadedness) may very well be a result of deconditioning.  After all, she was training for the Pittsburgh Half Marathon during the winter and early spring and she was lifting a 30 lb. two-year old multiple times a day, which counts as strength training.  I wasn’t trying to snitch, but I am thankful that the doctor emphasized the importance of her getting some exercise each day.

It is never easy to be dropped at the airport.  I’m torn.  I have a very full life in Athens, Georgia, with a wonderful husband, three dogs, and a job I love.  I’m still trying to assimilate the multiple myeloma journey into all of that.  It is a challenge to be so far away from the rest of the family, to not be able to drive over quickly for a hug or a meal or whatever might be needed.  It is hard to watch my mother sacrifice so much of herself and her life and not be able to take some of that burden away from her, a woman who has already endured far too much in her life.

(It occurred to me recently that my mother was my age when my father had his heart attack and emergency triple bypass surgery.  We nearly lost him after hours of failed angioplasty.  When she got home from the hospital that night, we cried in each other’s arms for a long time.  How is it that I am now that age?  My father died six years later.  Has my mother not been tested enough?)

For now, we await the BMB results to see what’s next.  Do we continue with the current chemo cocktail Revlimid ^[4] (lenalidomide), Velcade, and dexamethasone ^[5] (Decadron), or do we move on to cyclophosphamide ^[6] (Cytoxan) and one step closer to transplant?

We also remain thankful for another day and the many blessings we have, including the wonderful support network that is a critical part of helping us to Beat The H*ll Outta Multiple Myeloma!