Big Sis in Burgundy: Onward!
Still in post-marathon euphoria, I boarded the plane Sunday afternoon a week ago, and headed to Pittsburgh for my sister Deana’s Monday oncologist appointment. All my energy was directed toward us getting the report we hoped for – clearance to move to transplant.
Deana picked me up and was wearing a Texas A&M baseball cap – an appropriate choice for Team BTHO MM. I could see that she was bald underneath, and she later removed the cap to show me her head. I had been concerned about how I would react, as I didn’t want to cry. Who expects that their 39-year old sister will have cancer and endure chemotherapy so strong as to cause hair loss? It was jarring, but I held it together. Her hair will grow back…and we have her here, which is a great blessing.
We arrived at UPMC with Deana tallying up the bets for whether or not her plasma level would have dropped sufficiently to allow us to proceed. Apparently, only my mother and I are optimists. All others felt that another round of cyclophosphamide (Cytoxan) was going to be necessary.
What a thrill to have Dr. Agha walk in and announce that Deana’s plasma was at 6 percent and we were moving forward. I held back for a moment and then decided I was not going to contain my emotions. I jumped up and kissed Deana – and came pretty close to kissing Dr. Agha too!
Many of you know that the worst is still in front of us. What Deana will endure next is sometimes more than I can bear to think about. It all seems very unfair that my sister should have to suffer through this. However, we are not dwelling on that. We are getting closer to remission every day.
Deana will attend her transplant class on Wednesday and will then have her pre-transplant tests. It is our hope that all of that will be without incident and allow her to have her catheter inserted on November 11, followed by cyclophosphamide on the 12th, and the stem cell harvest approximately 10 days later.
It appears Deana will be spending December in the hospital, so I need to find out what kind of décor will be allowed, as it is imperative we make her room as festive as possible. I’m guessing that a live tree will be out of the question, but I am not beyond bringing one if permitted.
As we met with the transplant coordinator, I was again reminded of the importance of blood donors. I have been a regular donor since 1989, following my father’s heart attack and emergency triple bypass surgery. Deana’s battle with multiple myeloma has only reignited my preaching to all who will listen about why all who are able to should give. Deana will receive a six-pack of platelets as part of the protocol, and those will be made possible by generous people who take the time to donate blood. Those of us in the myeloma community need to raise awareness of this critical component of treatment.
I continue my work advancing the myeloma foundations as well. October 21 was Be Bold, Be Bald Day, an event to demonstrate solidarity with cancer patients. Organized by Small Army for a Cause, participants could select from a number of cancer charities as recipients of their funds. I (of course) chose the International Myeloma Foundation. I spent the day in a bald cap, which I personalized in honor of my sister and added a BTHO MM on the back for good measure. A t-shirt was part of the kit, and I had that on with a black pantsuit. In 20 years of work, I do not believe I have ever worn a t-shirt with a suit. The Be Bold, Be Bald poster adorned my office door and was also a cause of conversation, with many questions about whether I was going to shave my head. I’ll take any opportunity to share our journey, as I never know when the next important nugget of information will fall at my feet.
Later this month, I will attend the Multipe Myeloma Research Foundation (MMRF) Gala in Connecticut , where I hope to meet many other MM warriors. I have also registered for Empire State Run Up and the 2012 Marine Corps Marathon as part of the MMRF Power Team. I’m finding my membership on the Power Team to be energizing and inspiring and would be delighted to welcome you to the group!
Until next time, thank you for your continued interest in my story and the wonderful feedback you provide.
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Deborah-
What a wonderful sister you are! I am so happy your sister is moving forward in her treatment. I am a fellow Multiple Myeloma Survivor. I am 11 months out of transplant and I just ran a marathon 2 weeks ago! I will also be at the Gala. I hope to meet you there! I am looking forward to an incredible night of celebration, hope and inspiration!
-Jeanie
I remember feeling euphoric when Dave's white blood count dropped to 0.001 and thinking, boy this is warped! But my thought was, if he has to go through it then I want it to do what it's supposed to do! Anyway, I understand feeling excitement that Deana is ready to move to the next difficult step in her treatment, which will bring her that much closer to being done. I totally get it. Great news and good luck moving forward. Oh! And have fun at the MMRF Gala. I'm sure you will meet great new friends there. Look forward to a full report!
You will problably never know how much your sister appreciates you. But I do. My sister was and still is with me every step of the way. It is such a wonderful feeling to be able to count on someone during this horrible ordeal. I wish your sis luck with her transplant. It's been almost 3 years since mine. You all can get through this just fine. It is tough, but it sure is a good feeling to hear that word, "remission" . I hope you two hear it soon.
Deborah and Deana,
I am a fellow MM veteran, and went through a stem cell transplant a year ago. In advance of the procedure, I asked friends and family - those who had supported and encouraged me in this journey - to email photos of themselves to me, to augment the supply of photos I already had. When I moved into the hospital room the day before the actual transplant, we strung ribbons across the walls and clipped photos, some 120 of them, to the ribbons. During those days when energy levels were too low to watch TV or even talk, I was able to gaze/gape at these wonderful images and somehow soak up the love and support radiating from them. I think of all the concrete "things" I was able to do in preparation for the transplant, this was probably the most helpful.
Best wishes to you for success in this battle with those ornery MM cells. Thank you for sharing your journey!
Charty Bassett
That is interesting that your sister receives platelets as part of her protocol. I have a good friend who collects platelets at Cdn. Blood Services here and she also works with many dedicated donors. She always said she was collecting some for me too if I needed them at any point in the SCT process. Based on my blood tests, I never did fall below the 'cut off' line for transfusions and thus I guess that someone else got those precious blood cells! It was certainly reassuring to know, however, that the blood products were there for me should I need them. They have very well thought out procedures for the whole process, and won't let you fail!! Best wishes to you...don't worry about the hair too much. Try a wig!! It is quite a fun experience that I wouldn't have otherwise tried...and during the winter is the best time to have a wig on, for warmth!
How funny- my life and thoughts seem to be following the same path as yours this past week! My husband's MM has decided to rear it's ugly head again (he was at 0.0 mspike for almost a year on novel agents), so we are moving to stem cell transplant (will follow very similar schedule to your sister). We have both been regular blood donors for years (though no more for him, of course) and I feel like taking a picture of him and our 10 year old into the blood center next time I donate and putting them up with a note from my son saying "Thank you- the blood you are donating could save my Daddy's life"...sometimes I think it's nice if people get to put a real face on the thank you.
Best wishes for smooth sailing and fast healing for your sister!