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How does one put the “merry” into Merry Christmas or the “happy” into Happy Holidays when your Mother has received a diagnosis of DLBCL (Diffuse Large-B-Cell Lymphoma) two weeks before Christmas?
I recently wrote about the seemingly dismissive attitudes of doctors when dealing with intermittent symptoms from my otherwise healthy 89-year-old mother. Mom has had a pain in a specific spot in her back for over a year. In her doctor’s defense, she has had her share of diagnostic tests that did not reveal any abnormalities. BUT she has also been rushed to the hospital several times when the pain became too severe to tolerate. She’s been told the pain stemmed from arthritic changes - even though the spot was sensitive to the touch and not achy bone pain. Doctors also suggested that the pain was possibly psychosomatic (ie. in her mind). Only when the tumor screamed out, “Hey, look at me!” and she experienced 3 pleural effusions resulting in 3 thoracenteses ( lung tap to remove fluid) did the doctors start to suspect something more serious.
When fluid accumulates in areas of the body where it doesn’t belong, it can be a sign of a malignancy. Mom is a 27-year breast cancer survivor, having had a mastectomy without any other treatment. This fluid was on the side of her mastectomy. After 2 lung taps that did not show any significant pathology, I suggested to the doctor that he order a PET scan. Well, Medicare had the last word on that request: “Not indicated - not paying”. The pain persisted and the fluid kept coming. Finally, on the last CTA a 7 cm pleural paraenchymal mass was detected and biopsied. I expected to hear that my mother has a distant metastasis of her breast cancer, but I was wrong.
DLBCL is a very aggressive form of cancer. Mom’s oncologist suspects that the spot that she persistently complained about was the cancer presenting itself almost a year ago. NOW they would like to get a PET scan to see the involvement in other areas. I’m not trying to play Monday quarterback here but how much responsibility lies with the patient to push for more testing? And it seems that Medicare has the final word anyway.
Holiday cheer is hard to come by in my house at the moment. I’m normally a person that takes on adverse situations and tries to find a silver lining or acceptance. My Mom’s attitude is amazing and certainly helping the rest of us. She has some difficult decisions and a rough road ahead. I’m afraid that this situation may forever shape our Holiday memories. My advice is to give your Mom a hug and tell her you love her. Life is full of surprises and sometimes it’s not in the form of a wrapped present under the tree.
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Hi Susan - You're absolutely correct. Dealing with a cancer diagnosis and treatment around the holidays does inject very different concerns and considerations into the holiday period. It can be hard to be "merry and bright" or endure the endless parade of advertising for useless junk when you are dealing with a healthcare system that often is not addressing basic human needs or seeming to put the welfare of the patient first. Nonetheless, we need to find a way to summon our personal strength and work through the anger in order to be strong advocates.
I'm truly sorry to hear about what your mom is experiencing, and would like to recommend a support group to you. I've worked with the group for some time and have found them to be knowledgeable, compassionate and extremely strong patient advocates. The group is Patients Against Lymphoma, and they can be found on Facebook as well as at this link:
http://www.lymphomation.org/
I'm glad you are there for your mom as I see many cancer patients with no family members to help them with their daily needs, let alone advocate for them. Please let me know I we can help you in any way in your role as caregiver. One site you may find helpful is Navigating Cancer, which is at http://www.navigatingcancer.com/
You are a smart, strong, incredible woman, Susan and I just know you are going to apply your amazing energy to helping your mom through this. I wish you, and your mom, all the best.
Take care,
December 16, 2010 - 3:51pmPat
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