Myeloma Mondays #26: Ernie, Big EZ from Wake Forest, NC

Linda Baker for husband Ernie Baker, otherwise known as Big EZ .Check out their blog...their journey through cancer: www.walkingwithbigez.blogspot.com

Where were you born and raised?

• I was born in Buffalo, NY but raised primarily in Ormond Beach, FL

Where do you currently live?

• Wake Forest, NC

When were you diagnosed and how old were you?

• 1/29/10 - age 58

Did you know what MM was prior to diagnosis?

• No

Is there anyone else your in family with MM?
No

What led to your diagnosis? (example: broken vertebra)

• Increasing sacral pain, making it more and more difficult to sit comfortably. I used a stand up desk at work and took lots of ibuprofen as I sought answers to what might be causing the pain. I finally needed stronger, prescription pain medicine and went to an orthopedist.

How many times were you referred before actually being diagnosed?

• I first went to a chiropractor, then two different orthopedists and physical therapy before an MRI was ordered and "abnormal cells" were seen in my sacrum.

Where have you received treatment?

• Cancer Centers of North Carolina, Raleigh, NC
• Duke Adult Bone Marrow Transplant (ABMT) Outpatient Clinic, Durham, NC

Explain your treatment history:

• 1/26/10 - First sacral radiation treatment
• 2/5/10 - First chemotherapy treatment VTD
• 2/11/10 - 12th sacral radiation treatment
• 3/29/10 - Taken by ambulance to hospital for severe sciatic nerve pain down both legs - could not walk or bear weight
• 4/29/10 - Released from hospital after 10 additional radiation treatments to sacrum, 10 new treatments to upper femur for 1 inch lesion, food aspiration pneumonia from being bedridden, a failed attempt at an intrathecal pain pump
• 7/9/10 - 23rd and final chemotherapy treatment VTD
• 8/5/10 - Hickman catheter placement and Cytoxan chemotherapy and mesna at Duke
• 8/17/10 - Aphresis at ABMT
• 8/23/10 - Move into apartment in Durham to be close to Duke
• 8/24/10 - Melphalan chemotherapy at ABMT
• 8/25/10 - Stem Cell Infusion at ABMT
• 9/10/10 - Headed home to Wake Forest - DOT +16

Why did you or your doctor choose a specific treatment (For example, to have a transplant or not have a transplant, etc.)?

• Because I was relatively young for Myeloma, and had no other health problems.

What have been the side effects of the different treatments?

• Hyper on the Dex days making it difficult to fall asleep, fatigue, burning in the outer thighs, peripheral neuropathy in my feet, and hair loss following Cytoxan.

What has been the hardest thing about your MM journey?

• Initially it was getting the diagnosis of "abnormal cells" (which turned out to be a plasmacytoma) in my sacrum, and then being terminated from my job as Vice President of a small company 2 days later - no severance package or insurance benefits. I experience different and changing feelings on a day to day basis in my body, and don't know exactly what to attribute it to...cancer? medications? treatments? old age?
• But perhaps the hardest thing to deal with is my lack of mobility, independence and inability to sit. The tumor basically obliterated my sacrum which is the nerve hub for the lower part of the body. Sitting at 90 degrees is impossible for now because of the pressure it puts on the nerves to my legs. So, that means I have to sit very reclined. I basically have two positions, lying or standing. I haven't driven since mid March, I must stand to eat, and "sitting" to go to the bathroom is very difficult and painful. Surgery really isn't a good option at all, being that I have found ways to function. So I pray the body will rebuild my bone and once again protect my nerves so that I can walk without a walker, take my dogs for walks again in the mountains of NC, and just sit comfortably so my wife and I can go out to dinner and a movie again. For now though, I am happy I can walk!

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Treating my Myeloma has become a full time job and requires every bit of energy I have to fight it. I realize it is going to be a long, hard fight. Also, educate yourself about your disease, using current reliable sources such as the MMRF or Multiple Myeloma Research Foundation or the Leukemia and Lymphoma Society. Stay positive, keep the faith, hope for a cure!

How have you been able to stay positive and encouraged in your MM journey?

• Through the love and support of my spouse (and caregiver!), my family, my friends and my church. I am a Grandpa to two sets of girl/boy twins and have another grandchild arriving in March. There is much to live for! My faith gives me hope that I can do all things through Christ who strengthens me and my life verse has become Philippians 4:11-13. I want to be a witness for Christ in good times and bad, hoping to glorify Him in the process.

After being diagnosed... What perspective was changed the most?

• After being in executive management for years, I was unexpectedly terminated from work and forced to apply for disability. Therefore, my perspective on the importance of work changed, though I always want to keep my mind challenged. I am thankful I did not have to handle the stress and responsibilities of work with what I have been going through. My perspective on the importance of time spent with family and my wife has also changed. It is to be treasured and never taken for granted.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• No

What MM sites or blogs had you found good information from after diagnosis?

• MMRF, and Leukemia and Lymphoma Society.