Before I get started here… let me say this. Areas that are glowing indicate cells that are reproducing at an un-normally high rate of speed. In other words… most likely cancer. In this case, metastatic cancer. These two pics show only some of the areas of concern. Sadly… there are more.
My apologies for the length of this post… I know you don’t like to read long ones.
I had intended to wait until I had actually had the opportunity to discuss the most recent PET scan with a doc… any doc… but it seems I’m having difficulty making that happen. The new oncologist I saw a month ago, the one I was referred to by the VA… the one that was going to review my test, get with the a new radiation oncologist to discuss and determine a plan of action for treatment… has not allowed me the privilege of hearing from her. She said that she would get me an appointment with this new radiation doc within two weeks. It’s now been nearly four… no call from him either.
The doc that set up the scan to begin with… you know… the one that gave me two days’ notice that she was not going to be doing radiation treatments in this area any longer… didn’t call about the results either. After the report had been sent to her, available for all involved docs to read, I waited a full week in anxious anticipation of getting some clarifications of the report. No one had even bothered to call. I would presume that none of these (so called) professionals even bothered to read the report at all.
Finally… I called my original radiation doc since she was the one who ordered the test, to ‘beg’ for her interpretation of the results. I got voice mail. I didn’t leave a message. She had given me her husband’s number, in case I needed something…? So, I called him. He’s an RN and works… umm… worked with her at the office before she quit. He still does something there… with patients… with the door locked… (Hmmm)… but I’m not sure what. I told him that the report from my scan that his wife had ordered had been done and the report would have been available a week ago, yet… I haven’t heard from her. He said he would contact her about it. I said, thank you very much, I appreciate it.
Two days later, I still hadn’t heard from her so I called him back. I thought you might find some entertainment, or perhaps… find reason to wonder about the medical profession. Here’s how that conversation went:
Hi Mr. ******, this is (Me)… were you able to contact Dr. **** about my report?
He then said: She tried to call you three or four times yesterday…
Me: Umm… Mr. ******… that’s incorrect… I was home all day yesterday and I got no calls…
Him: Well… then… it was the day before.
Me: I was home that day also and she didn’t call…
Oddly… the doc then took the phone away from him and talked to me directly… to my surprise.
She was there at home… and available… although she sounded quite sleepy even though it was around 8:30 a.m. My apologies… I thought RN’s and Docs got up early on Friday mornings and actually, she was supposed to be working out of town somewhere… or so I was told. Guess I was wrong.
The doc then said: Did you pull your results off the site?
Me: What site? I don’t know how to do that… in fact there are times I don’t even have internet.
Doc: Let me pull it up so I can give you the correct information because… it wasn’t very good.
She continued: The mass in the right hilum was larger than it was… and there were numerous spots in the right side of the lung… and numerous spots along the lining along the rib cage on the right side… and fluid in that lung as well… basically just everything exploded in that right lung.
Me: So… How do you think I should proceed from here?
Doc: Well… considering that most of the local physicians just aren’t very interested, I’m sending most people up to the ******** Oncology Group up in ****** and they would at least be able to give you a recommendation of whether they would even be able to do anything with your overall health… because the next line of treatment would be either chemotherapy or immunotherapy.
Me: Let me ask you this… When I told my VA doc that you weren’t going to be doing radiation therapy any longer, he referred me to an oncologist at *****… I don’t know anything about her but it is Dr. ********…
Doc: Yeah… she’s one of the new ones that just started… just out of training.
Me: Well, I wasn’t sure where to go from here…
Doc: Well… do you want me to have *** call up to ******** and see if he can get you an appointment up there? I’m sure she’s good, but knowing that she’s new and right out of training and she’s in kind of a time of transition…
Me: Why is ******** a better place to go?
Doc: ******** is kind of like a mini cancer treatment center of America… they cover everything that could possibly help. The next thing you need to have done is either some chemotherapy to see if you respond…. or… you may qualify for immunotherapy right off the top… and that’s been working pretty good for some… with very little side effects… It’s about an hour or so drive from you.
Me: Yes, and as you know… I don’t travel well at all. My car is old like me and if I had to go back and forth, either me or my car probably wouldn’t make it.
(((Now… please allow me to interject my own thoughts into this conversation at this point… This doctor and I have had several previous conversations about the fact that I just can’t travel due to my health and heart condition. That’s why I quit driving to the VA that is also about an hour or so away. I’m beginning to wonder if she listened to anything I told her over the past few years. Maybe I should send her a link to this journal… it might be good for any future patients.)))
Me: Do they not do immunotherapy here?
Doc: Umm… they will… it’s just that the systems here are so… umm… it’s just that they aren’t taking very good care of people… the patients that go into the system… just really get… they just get things done to them that they really don’t need to have done… they’re more interested in capturing charges than helping patients.
Me: So… can I think about this ****** thing a little bit and call you or *** back?
Doc: Yes, since you have an appointment with that new doctor you can keep that and then call me and I’ll have *** get you an appointment…
Me: Okay… well, that appointment isn’t for another couple of weeks and I feel like time is a definite factor since things seem to be growing…
Doc: Yeah… well… you could call that doctor and see if they couldn’t get you in sooner. I’m sure they probably could.
Me: Okay… well… thank you so much. I really appreciate all the information. You guys have a great day.
Doc: Okay… you too. Bye.
There seemed to just be so many things wrong with this conversation. Maybe it’s just me. She really told me nothing except what she read directly from the report itself and didn’t even cover everything that was in it. It’s almost like she had only glanced over it previously. She already knew that I didn’t travel anywhere because of my heart, weakness and various other reasons, yet recommended I travel an hour both directions for no telling how many trips. Then she belittled the ‘new’ doc I had an appointment with. I’ve never heard a doctor say anything bad about another doctor to a patient… no matter how they really felt. Then… on top of that… she trashed the facility where that ‘new’ doctor worked. Really?
So… I still don’t know what to do at this point. I heard nothing in that conversation that was very helpful to my situation except for me to travel to another city… which I cannot do. Actually, if I could travel… I would be back to the medicare thing and its delightful 20 per cent co-pay… which I cannot pay any longer… and… if I could travel… the VA would kick me to the curb on providing any help at all for the doc they’ve set me up with here. Ahhh… health care in America. What a delight.
I realize this is not much of an update, but I just thought it would be good for me to share one of the unusual experiences of facing terminal cancer that most people don’t seem to want to share. This is our journal… and I feel comfortable here… sharing whatever I feel like sharing.
To update you just a bit on the symptoms… All previous symptoms are slightly worse than they were in my previous post. Plus… I have horrible pain in my neck, across the full length of my shoulder that has been quite persistent, limiting even further my physical ability. I read where neck and shoulder pain could be caused by lung cancer… or I suppose it could be an impingement. The vertebrae’s in my neck are all diseased with degenerative disc, compressed and painful, pinching nerves… so there’s no real way for me to know the cause. (Use caution with this next one…) I’m also coughing up a bit of blood now. Something I have evaded through the previous six years of cancer. The actual source is unknown… I can only speculate.
Perhaps those who care about me the most… shouldn’t read the following few lines.
There is one more symptom that is becoming more and more obvious I suppose… to me… perhaps to those who care about me. That is… I’m growing very tire… tired of the weakness, of the pain, of the doctors, of the procedures, of the money, money, money that I no longer possess… tired of not being able to do what “needs” to be done, much less… things I’d “like” to do. I’m tired of mirrors telling me that my eyes have faded to gray… that my face is pale and thin… that the way I have had to age over the past few years has not been kind. I’m tired of my own pretend happy face.
So… there… those few psychologists that read my blog… feel free to wrap that up in your psychoanalysis and post in my comments… Go ahead… do it. I want to know your opinion… off the record of course. I know… your first thought is that I’m depressed………. I am not. I’m very ill and I’ve been very ill for some time now. It’s hard to deal with all one must deal with when they are suffering with life threatening diseases, especially when you know how it affects those who care about you, and dealing with healthcare professionals that don’t really seem to give a shit.
I still have a sense of humor… although… my sense of humor often falls into the category of sarcasm… at least from time to time. I don’t feel alone. I haven’t given up hope. I haven’t lost interest in things I enjoy. I still fully enjoy pickin’ my guitar… even though I often have to laugh out loud at my lack of talent. I have no suicidal tendencies… though… I must admit… I’d still like to jump off one of the tallest peaks of the Alps in nothing but a wing suit.
You certainly can’t ever say that I don’t place honesty in my journal-ism.
I’ll have another update next week after the appointment with my ‘new’ doc… you know… ‘one of the new ones’… ‘just out of training’… the one ‘in kind of a time of transition’… at the facility that ‘doesn’t ‘take very good care of people’. Could be entertaining. I could learn a great deal more than I did from that conversation.
Have a beautiful day… see you next week…