I was thinking about how long it's been since I was diagnosed with NSIP. It was November 2015, almost 3 years ago. Research I did on Google after diagnosis (a really bad idea, by the way) told me that I had an average of 6 to 13.5 years to live. Once I got over the being scared shitless, I figured that I would last much longer than that - after all it was caught early, wasn't it?
Then I had the cancer and the subsequent treatments may have caused more fibrosis (no one has actually said if it did or didn't, just that it was a possibility). Since the treatments for cancer, I've started needing oxygen - first for when I was exerting myself and now almost 24/7. The dose of oxygen is fairly high from what I've been able to learn by doing my own research.
After the initial research I did on the disease when first diagnosed, I decided not to research on Google any more as all it did was scare me and make me depressed. The pulmonologist would keep me informed, right? WRONG! I have really learned very little from the pulmonologists and have learned most of what I know from people with the same and similar disease on a few Face Book pages. The more I learn from them and sites that have been referred to me (such as the Mayo Clinic and other supposedly reliable sources), the more I ask the Dr. here and the more I'm dismayed by his lack of response.
Treatment options have not been discussed unless I bring it up with him and questions basically get the stock answer that everyone responds differently so he can't really give me an answer. The only treatment option that he brought up was to tell me that after the cancer, transplantation was no longer an option for me. I had to request a referral to the pulmonary rehab program (which he touted as being such a great program after I'd requested it but had previously never mentioned).
I have learned more and had better treatment by the ER Drs. Thanks to them, I discovered I had a pulmonary embolism and follow up treatment was set up to deal with this. Also it was the ER Dr. who got me started on oxygen therapy when the pulmonologist hadn't bothered to call me back to discuss my difficulty breathing. When I informed the pulmonologist about the embolism and the need for oxygen, he didn't give me any reason to think he was concerned about either of them.
Enough ranting about his lack of treatment. The reason I started writing this post was because of the first sentences and how I got to thinking that I've survived 3 years of my projected 6 to 13.5 years. What is to come in the next years? Will I plateau, will I get worse, will I go into remission?
Unfortunately, my crystal ball has quit working so I can't predict which way it will go. I do need to somehow get out of this funk that I'm in and start to live the life I have left instead of wallowing in self pity. Presently, I've been counting on the ILD specialist who I will see next month to answer all my questions. This expectation isn't realistic and is totally unfair to her as I'm pretty sure she doesn't have a working crystal ball either.
I don't know why, but just writing this all down makes me think a bit clearer. I'm not sure how I'm going to do it, but somehow I'm going to stop with the pity party and start really living. I guess I've just got to take the bull by the horns and start fighting! I think a good start would be to get off my fanny and do something that kinda scares me - go shopping! I just have to plan things better so I know I won't run out of oxygen but I can and will do this! I'm sure that once I get this stepping stone out of the way, I'll be able to advance to other things - like taking a road trip all by my self.
Next post will be all about my shopping trip. Maybe even tomorrow.
Life is short, eat the damned dessert!
No comments:
Post a Comment