More Waiting

August 14, 2014
We're back to waiting - AGAIN. So, the biopsy that was done in the hospital was inconclusive. We know nothing more today than we did on July 3 when my mom was diagnosed. It is incredibly frustrating. The lack of information and tests without results has really worn on my mom. She's ready to call it quits. Her onocologist referred her to a radiation specialist. We met with him on Tuesday. He helped fill some gaps and understand information that has been given by the two oncologists we've met before. He also presented some new questions.

For example, he doesn't believe the lung cancer has spread to the groin. Her oncologist doubted it too, but wanted the biopsy to rule it out/learn what it was. I mentioned that we had questioned whether it was lung cancer at all and if it was actually a reoccurance of melanoma that was removed in 2006. No treatment other than surgery was done at that time. I had the report, so I showed it to him. Within it, a biopsy taken from a lymph node in her breast revealed histiocytosis. My mom doesn't recall any mention of it then or any time since. This could be relevant, because my aunt (her sister) also has histocytosis. When affected by this disease, lymph nodes can be enlarged and show abnormal on PET Scans. This could be why all lymph nodes show activity in my mom's scan. This doctor believes my mom is Stage IIIB, just as her Thoracic Surgeon indicated. He wants to do a MRI scan of her brain to rule out metastasis. If it is positive for cancer, then chemotherapy wouldn't be very beneficial. Radiation could better control tumors preventing seizures and stroke and prolong quality of life. If it is negative, then a combination of chemotherapy and radition would benefit her most. With successful treatment her prognosis goes up to five years. It more than doubles compared to chemotherapy alone. However, my mom has also been diagnosed, this year, with Lupus and Mixed Connective Tissue Disease. Chemo can actually improve those symptoms, but Radiation can cause additional side effects. The skin can have a bad reaction. The affect could be immediate or not for 5-10 years. He believes it is worth the risk.

Radiation is a huge commitment. There is no treatment available in Pahrump. She would have to come to Vegas 5 days a week for 6 weeks. It has it's own set of side effects. And she's already been heavily affected by the Chemo. So much so, prior to meeting with the radiation doctor she was leaning toward stopping treatment if she was not feeling better. Since that meeting, her hope has been renewed (though, she's not feeling any better). The possibility of being cured (Stage IIIB) vs. a terminal disease (Stage IV) makes a difference in her fight. Quality of life is most important to her, but she also would like to see her granddaughter toddle around. She understands that her prognosis is based on statistics and there are exceptions to the rule, but she is no stranger to the reality of the situation.

I'm relieved to have another doctor involved. The more the merrier, having another opinion or perspective can make a huge difference. I want to explore all options and provide her with the most information that will allow her to decide what's best for her needs. It is her, after all, that has to go through all the poking and prodding, the tests, the appointments, the fear, the side effects, etc. The rest of us are along for the ride. We have agreed to support any decision she chooses.

Tuesday she goes for the MRI. Thankfully, we won't wait long for those results. We will meet with the radiation doctor later that afternoon to discuss the results and formulate a plan to move forward. Moving forward with conclusive evidence is all I ask. I can cope with the better or worse. The unknown is most frightening.


Anonymous said...

:) you're amazing

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