I can’t believe I have to even start this or even that when my mom passed 3 years ago in July that this is where we would be. It all started around September last year when I had came over to my dad’s and found him stroked out while I was on the phone with my sister and I called the ambulance. We went to the little hospital here which is terrible, story for another time, but they found spots that they didn’t know anything about so they sent him to a bigger hospital in another town. Days and multiple tests later he had a stroke, a pituitary adenoma on his brain, CLL(Chronic Lymphocytic Leukemia) and this spot in the lung they aren’t quite sure of. So he spent weeks in a rehab facility and months in an assisted living facility while getting his strength back from his stroke and he had started a chemo medication. All of this at private pay mind you and those facilities are some sneaky devils with private pay people!! And that Cancer medicine the co-pays (yes after the insurance!!) were $15000.00 a month. Haha. I had to find a grant to cover that because we are already almost dry at this point with the assisted living, so he was off of it for 2 weeks because we refused it until we knew we could find a way to pay for it or change it to a more affordable medication!
In June they sent him for a CT of his chest so we got it done at that same little hospital because it’s close to us. They called us a short time later and said he needed to go to the hospital in the bigger town and be admitted because he had what is known as a pleural effusion and they believed it had became loculated. And his fluid had returned that had been drained when he was there last year but was worse. They tested the effusion for infection and was going to drain the fluid but decided against it because the re-imaging they took the lining of his lungs had now looked like an orange peel and it would do more harm than good he was released Father’s Day yay.
We had went to a follow up a week or two ago with the cancer doc and they gave us the bad news that the meds weren’t working and we needed to change our treatment course. Very quickly appointments were set up for him to get a port and the chemo they wanted him on was going to be rough!! 8 hours for the first treatment. Along with that is a pill form. So we had a chemo teach and financial counselor appointment set up just a few days after. And she advised us he would be needing iv infusions of iron because his body is not absorbing for some reason. We also needed another CT but this time of his abdomen.
Flash forward to July 3rd’s appointment with the pulmonologist they now, after getting the biopsy of the effusion cells and it being cancerous as well, AND her looking at the difference in it’s size doubling in 4 months, we have to do a bronchoscopy biopsy on the effusion to get a better biopsy to determine if it is primary lung cancer or secondary to the CLL because that would be pretty rare and either way probably changes his treatment course now.
Cancer takes so much already and is definitely taking what’s left of my father let alone the cost that comes along with it. All the co-pays for the meds AND every time they do a scan or procedure. Not to mention the gas depending on which hospital we have to go to even which one in the big town because there’s a few they all work at. It’s 57 miles one way for one of them I can’t remember the other one. That may not seem like a lot but when you’re doing that a few days a week plus all the co-pays, and we have to start packing up on port equipment soon, and I have only been working 1 job since all this has been happening and then my father has his social security but you still have life’s bills like, payments, UTILITIES, ugh. It just doesn’t even seem like it’s life.
If you crossed paths with my dad ever playing golf or if he fixed your car or had a drink with him at the bar. Or if you know his grandchildren he was more proud of than his own children most days but we both know about it so don’t feel sorry for us okay. Please help him on this path that we’re not sure where will end, but we are very sure we will need all of our new friends!!
Thank you so kindly especially if you stayed to read the whole story I’m sorry it’s already a bit long. I will try and come on here and update further a much as possible. We have multiple appointments set up the next 2 weeks for his port and chemo teach and etc. But we need all the help and support we can get and appreciate it more than the words I have said or can ever say!!
Thank you