My husband was diagnosed a year ago late in the game. He refused to see any doctor until another separate medical issue brought him into a ER. He had a very bad weekend. We cannot figure out if this is related to the diagnosis of MF or not. He injured his spine with a crushed disc. Other disc are bulging. On top of all that he also has a curve in that spine which is causing pinching of the nerves of his legs. The only way to help that is to sit down. Yet this weekend his pain level was close to 10 because both of his calves had the same Charlie horse which usually goes away by sitting down. He has gabapentin. It does nothing to alleviate the pain. I am asking if the spine is related to his MPN diagnosis. Yes he was diagnosed after a bone marrow biopsy at age 70.
We visit his oncologist next week and I am preparing a list of questions. First is the spine issue as above. Second is about this bloodwork he has. It’s a mess and my husband is a very sick man who I cannot help. How do I ask what stage my husband is with this disease? He refuses to call it cancer. It is a “blood issue”. So he lives in dreamland because he doesn’t think he is that sick. How do I know what his bloodwork means? He is obviously dying. I accept that. What can I know about signs and symptoms of what is actually going on?
The oncologist/ hematologist we see thinks everything is humorous…. I think he sees my husband as a dying 70 year old man and that is his treatment advice. Laugh at the world because there is no treatment available nor can his pain be alleviated.
This just sucks!! I want to do something to learn about what is happening but I am in no way a medically knowledgeable person. I can learn as I have hemochromatosis… which is a nothing compared to this.
He went from a very active hard working man at the beginning to someone I do not recognize.
Sorry this is rambling and long but I see him dying right in front of me and I cannot reach him because he is angry. He knows what is happening but refuses to even discuss any of it including her ever increasing (or decreasing) bloodwork which shows his downfall is eventually coming. How long can he exist with a WBC 49.14 K/uL? It keeps getting higher every time. Started at 33.9K/uL on Feb 14 25.All other labs are either too high or too low.
One more question… he is scheduled for a colonoscopy in 2 weeks. They are aware of his condition and still doing it. His father refused medical care until he was diagnosed with colon cancer and died in less than 3 months. I was his caregiver for those short few months.
Ok I probably have more to add but for now over and out. Thanks for reading.