The journey below is written by Lori, Dave's wonderful bride.
Where were you born and raised?
- Dave was born at a military base in Ft Rucker, Alabama but was raised in Bay Shore, Long Island
- Northern California, outside of the Sacramento area
- Dave was diagnosed while working California. We were in the middle of a coast-to-coast relocation from Suburban Maryland outside of Washington, DC where we had lived for 27 years.
- No
Is there anyone else your in family with MM?
- No
- Dave couldn't get out of bed to leave for a business meeting in Las Vegas. He was staying with childhood friends of mine in California while I was still back in Maryland selling our house and getting ready for our move. He was transported eventually to a local, small town hospital, where he was in tremendous back pain (a T8 compression fracture) and the original diagnosis I received long distance was a "metastatic cancer of the spine". The radiologist saw Dave riddles with lesions.
- The following day an oncologist was called in and ran the necessary tests. I learned he had Multiple Myeloma while I was in route and changing planes in Nevada. I had never heard of MM. We realized after the fact that Dave had been having benign, non-descript symptoms for several months. He had a received a complete physical in November 2007 and was diagnosed in June 2008.
Where have you received treatment?
- Little Rock, Arkansas, UAMS/Myeloma Institute for Research and Therapy
- Sutter Medical Group, Sacramento, California (maintenance therapy)
Explain your treatment history:
- 6/2008: Started Thalidomide/Dex
- 9/2008: Consultation at UC Davis, Sacramento
- 10/2008: Consultation in Little Rock, Arkansas
- 10/2008: 19 HBOT treatments to counteract radiation treatments impediment to collect stem cells for ASCT (see attached U of Penn article)
- 11/2008: began stem cell collection (successful HBOT treatments produced 47 million cells in 75 minute collection)
- 12/2008: Autologous Transplant #1
- 02/2009: Bridge Therapy
- 06/2009: Bridge Therapy
- 09/2009: Autologous Transplant #2
- 12/2009: Maintenance therapy commenced, Revlimid (continuous) and weekly Velcade infusions combined with Dexamethazone.
- 03/2010: Ceased use of Dex due to toxicity and side effects (bloating, edema, constipation, insomnia)
- We were not aware at the time of novel therapy, non transplant approaches. So we only researched where and who would perform the ASCT.
- I worked for the University of Maryland at a research center and wanted to have the advantages of a researching physician vs. a treating physician.
What has been the side effects of the different treatments?
- All the usual culprits. Constipation, due to pain meds and disease, fear, suppressed immune system, hair loss, PN (handled with Alpha Lipoic Acid and Vitamin B6, B12 and foilic acid), etc. Nothing out of the ordinary or extraordinary. Fatigue is still the biggest issue Dave is dealing with now. He breezed through his second bridge therapy and transplant. It was pretty much a non-event for him and we were discharged to go home early both times.
- Dealing with the emotional issues of having "cancer". The learning curve of dealing with a "rare" disease and finding information that is current and optimistic.
- Don't accept the first information criteria you receive, but challenge and search to find the right physician/facility that align with your personal health issues and outcome goals. Find survivors and contact them directly. They have no agenda except to share their experience. Realize that Myeloma is a very fluid disease treatment and look for someone who is up to date and will tailor treatment for your particular presentation and goals. Be strong, persistent and garner support from friends, family, strangers and other myeloma patients and caregivers to help you negotiate your journey. Pick your path and dedicate yourself to it. Be flexible and patient through your process. Know that it will indeed end, you will come out the other side. There are countless others, thousands, who have gone through it before you and survived. Don't spend your time worrying about things that might be, but are not. Deal with what is in the present. Find others like yourself to garner support and understanding. Remember that your caregiver needs support as well. He or she is going through a lot and they need to stay well, nourished (spiritually and physically), and healthy. You are in this together. Everything Dave and I went through was "we". WE have Multiple Myeloma and WE are in Complete Remission. While our journey's are distinctly different, they are also tightly parallel.
- When you are done, please, go out and live your life! Don't let Myeloma define you, relegate it to an EVENT in your life, epic certainly, but an event nonetheless. Give back when asked and if moved to do so, but don't let it become anymore consuming than it already has.
How have you been able to stay positive and encouraged in your MM journey?
- Absolutely. I know no other way. My mantra these past 18 months has been "Life isn't about waiting for the storm to pass. It's about learning to dance in the rain." - unknown The challenge was keeping Dave positive and getting his "head in the game!" I knew Dave would get treatment. I knew that he could win. Convincing him was my challenge and my role as his wife, friend, lover and caregiver. He is my hero. I'm incredibly proud of all that he has overcome in the arena of positive attitude, stepping into realms he never dreamed in a million years he would be facing. Some have written that just telling a person they have cancer is enough to kill them. I watched him wither away mentally and physically right before my eyes in a matter of days. I joyfully watched him, take the bull by the horns and turn it around.
- Immediately after diagnosis, a dear friend of mine called who is a top Internal Medicine Physician in the DC area. My son, who went to school with her son, drove over to her house, unannounced, to tell her what had "happened". She called me immediately and the first thing and last thing she said, very emphatically was, "Lori! Multiple Myeloma is no longer a death sentence!" It was this basic premise that kept me moving forward and dragging Dave along in his treatment with the total conviction that we would come out the other side. My perspective has not changed, but has been validated and confirmed. Dave did get his head in the game and has done an outstanding job of appreciating all that he has accomplished. He tells people that he is "taking his life back!" I remind him that we don't have to take it ALL back!
- You are stripped NAKED of everything unimportant in your life. What you are left with is love, family, friends. When you come out the other side and are standing at the top of the abyss you have just climbed out of and look across the beautiful vista before you, you realize how strong and capable you are. Its a great time to take a moment at embrace all that you are grateful for and then move forward, always forward.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
- No
- Dave Emerson's Beating Myeloma
- Nick VanDyke's Myeloma Blog
- Pat Killingsworth's Myeloma Blog
- MMRF Website
- IMF website
- Myeloma Beacon
- Martha's Myeloma Blog
- Beth Morgan's Myeloma List Serv
- Dave's caringbridge website: www.caringbridge.org/visit/
davidpuente - My caregiver blog (work in progress): http://ridingthewave-
habubrat.blogspot.com/
**To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil
3 comments:
"-What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
-How have you been able to stay positive and encouraged in your MM journey?
-What perspective was changed the most?"
Your answers to these 3 questions are must reading for newly diagnosed.
A loving couple working together to acheive success.
Sid
Thank you for your kind words Sid.
BTW, Dave was 48 at the time of diagnosis for those wondering. Prior to diagnosis he had ZERO health issues.
I thought I might like to update you. We are over 3+ years out now. Dave is still in CR and receiving maintenance treatment of Revlimid (21 day cycle), weekly Velcade infusions, and Zometa every 60 days. He continues to work entirely too hard, is about 30 pounds overweight, fatigued, and out of shape. But he is extremely happy, successful, and laughs out loud freely in ways he never used to. He has learned to live with cancer and continue to be unencumbered by the worries of it coming back. He says he is simply not going to waste his time with something that isn't here yet, that's what his doctors get paid to do. We celebrated 30 years of marriage this year and have watched our two children successfully graduate college and both are gainfully employed. He told me not to get a job and to do a long held dream to venture into the fiber arts (weaving), which I have done all this year. It has been a joyful experience for me. I still blog regularly at Riding the Wave (www.loripuente.com) and sometimes get opportunities to speak about our story. We remain optimistic and upbeat.
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