jefff,
Not as great as I hoped, some infusion weeks are like that so you learn to roll with it, thanks for asking.
snagstangl,
It didn't start out that way, I'm an A++ type personality, worked in several fields where I was the main troubleshooter and if I were called in for a situation bodies moved out of my way so I could either fix the problem, if that was the capacity I were in at that time, or come to a solution that I would write instructions for someone else to physically perform what was needed to put it right. To put it bluntly I was a complete and utter contro freak, failure was a word not in my wheelhouse and the awards I amassed for attention to detail, service above and beyond expectations etc, etc were many.
When I found myself in a hospital bed less than 5 hours post kidney biopsy for kidney failure and a bleeding kidney I knew right there and then helping me through this was so far out of my control I was close to having a panic attack, and yes I know what those are I do have them on occasion even now. When my oncologist told me that due to all the fluid my kidneys could not relieve I was going to take on plenty of water weight, little did I know that it would be 74 lbs before they came up with a diagnosis of Mantle Cell Lymphoma with a secondary of the kidney disease FSGS ( I won't even begin to write that out). I became the second case on the books where that particular kidney disease was linked as secondary to my MCL and there is no cure for either.
My oncologist sat me down and spoke to me plainly explaining how poor my outlook was, I was too ill for conventional medical chemotherapy treatments for my MCL, his words were "it will kill you, so I have to back off and take a lower approach to just get its attention so we can get you well enough for more aggressive treatments." I swear crickets were going off in my head.
I tossed and turned most of the night and when I wasn't the four wheel wonder carrying all the stuff they were putting through me would walk in hope that I'd finally feel sleepy. When the word came that I was to be discharged on Friday and begin chemotherapy treatments Monday the world as I knew it came to a halt, the closest thing I can equate it to is when I'd see old friends after coming back from Vietnam they would comment on how different I was, not in a bad way but different, my answer for that was that me died there, the same thing happened now.
While it took a few treatments and unbelievable appointments to the oncologist, nephrologist, my PCP, an endocrinologist and more that I finally hit the wall and told myself I was no longer in control and in order to get some semblance of who I had become I needed to let those who could control things do there jobs w/o interference much like those that got out of my way when I was the troubleshooter. With that 800 lbs gorilla finally off my back I found more sleep came.
Not being capable of doing things I did prior to becoming ill I found things I could do and they filled more of my days save for the intrusion of medical appointments, treatments, bloodwork etc. I read 97 books the first year once I started treatments.
After my fourth treatment I was sent for a PET and when I met with my oncologist he looked at me, took off his glasses and simply said "unbelievable!" What was never expected had happened they call it NED, no evidence of disease. Now this didn't mean either of them were gone since as I said there are no cures for either, what it meant was the disease had been pushed back with the chemotherapy cocktail my oncologist came up with to the point it was not detectable with the current medical equipment used, this is the best scenario one can hope for, at the sixth round of chemotherapy I was placed on watch and wait.
Coming up to my third year, the critical one with MCL since 100% of those with it relapse before or at this point. When I was sitting in the waiting room with my port accessed and tubing hanging out of my chest the oncologist walked in and sat down. After opening the chart and reading results he looked at me and said "you still have your port." I said yes Dr. K, I do." "Why is that?" he asked, I answered "because every time I asked if we could have it removed you would say I would need it again" he looked at me and said "that's right." I felt like I was back taking finals again.
He then told me that there were less than 300 cases of MCL diagnosed worldwide each year and if we were to have all of the cases diagnosed the year I was be all in one place all that would be there would have relapsed or not had made it this far and that I was the bright spot in his career. Now this had ne nervous because I didn't miss the innuendo of there was more to what he had said but had not actually said it. I the asked if he was OK, he was 74 y/o and my first thought was perhaps he himself was ill, he told me he was fine but that he would be retiring so the next time I came back for an appointment in three months I would be seeing another oncologist. I was stunned and simply said "but you saved my life!" He held up his hand and said "no, you saved your life, you should not have responded the way you did to the chemotherapy I administered, you never give anyone on the staff a hard time and they actually argue who will be working on you, that positive attitude you have is something more of my patients should have and if they did 50% of them would still be with us."
Well I wrote a book, I'm sorry about that but I'm at my 8th year and while I showed signs of activity with an enlarged spleen, markers in my kidneys and liver and a growth on the tail of my pancreas my current oncologist was proactive in beginning maintenance treatments every other month and I will continue as needed. Do I have bad days, yeah, you don't have to be ill to have one but then just because your day isn't great it doesn't need to spill over and ruin someone else's so I refuse to allow that to happen. I do take joy from tiny little things each day and when I can't find some I find something to take my mind off of it, thanks for allowing my blathering!
banjo
I think it's like the numb skull fighter who doesn't know enough when to stay down for the 10 count sometimes they still have that punch needed to get the job done, cheers.