Mike, I just wanted you to know I will be praying for you. I have always been the same as you, as in let's get started now! As you may recall I have fought this cancer thing three times and I am still here. No reason you can't do the same!
Wishing you the best.
There are some pretty brave warriors over her on this channel so you are in good company,
I had terrible headaches so they did an MRI of my brain and it turned out to be nothing and was mostly stress related. Once you are on the "treatment train" you will feel better because you feel you are fighting where right now you are on hold and that is really the worst part I think.
Download some movies and good music. You will meet some awesome people at chemo.
Have you ever tried meditation. I had never done it but found it helped the headaches and I also had reiki (?? spelling) and that helped a lot. You are going into war so use all your guns.
Enjoy each minute. Don't worry about tomorrow because you can't do anything about it.
I am keeping you in my prayers.
Kind of like a TV channel. I've moved from my regularly scheduled slot over in Muscle Invasive to a new time and channel here in the Metastatic section.
The big second opinion Review Board meeting with the extended team of surgeons, oncologists, pathologists, fellows, etc. was held this morning to review my case.
It appears that the consensus is now that at least one of the suspect lymph nodes can be biopsied.
They also confirmed what I thought had been very confirmed already and that is that the kidney in fact does have high grade cancer. I swear we knew this weeks ago but apparently the pathologist had just said “highly suspicious for…”. Well now all the experts looked at the cells under the microscope themselves and decided there is no question about that.
As far as the lymph nodes go, they thought they might not be able to biopsy them but now they think they can get to at least one if they have one of the radiological surgeons do it. Apparently, they are all very close to blood vessels but they really want to try. You’ve probably seen what I’m talking about on TV where the surgeon is watching a big x-ray machine while guiding the tiny wire to its target to perform some task. The task in this case is to grab a little sample from a lymph node without messing up anything else on the way in or out.
They are working on scheduling that. So I am in wait mode yet again on that front. We need an emoticon for extreme frustration because I want to use it in about three places in this email.
They also want a brain MRI. I think one of you may have called them and placed a doubt in their minds that I even have a brain so the MRI should prove that one way or the other. So there! I have that scheduled first thing tomorrow morning.
Actually, due to some recent headaches they want to make sure nothing has gone to the brain because bladder cancer, when it metastasizes typically goes to lymph nodes, bone, lungs, liver, peritoneum, and brain (in that order of risk). I think the headaches are because I am going crazy with all this testing and because I haven’t started on chemo yet when I think that should have been started at the end of last week.
I learned today that the lymph nodes that I thought would be considered local/regional aren’t really. The ones that would have been considered local/regional have all already been removed from the surgery four years ago. So, they are all considered distant. I thought only the one in the chest area was considered distant and was hoping that one was maybe just inflammation or some different or new primary cancer or something.
That’s not good from a prognosis standpoint but it is also the reason for the biopsy. If the lymph nodes are not cancerous (even though the PET scans indicates it is highly likely that they are and they keep showing up on multiple scans) then they would just remove the kidney and that would be curative. They can’t just take the kidney without knowing for sure because chemo is very tough on the kidneys so it is much better to have two of them to share the load. I think this is kind of like one of those flow charts that says “Miracle happens here” though. Please don’t interpret that as being negative. While I am a positive guy all around, I am by no means a Pollyanna either. Personally, I think we are wasting time right now by not starting the chemo regimen. However, the doctors have agreed that if biopsy is possible it is worth being absolutely sure. To be clear, I will be happy for them to be right and the lymph nodes just be a long standing inflammation of some sort but I’m not betting the farm on it.
My next update will be as soon as I get the results from the lymph node biopsy. They are working to schedule that as soon as possible. I am hoping that is this week.
I read all the chemo stuff that they gave me at UCH plus I’ve researched and read pretty much every relevant article and study. I've sent my grown kids the free cancer information and counseling line information so they can call if they need. I also highly recommended it to them.
I’ve purchased my electric razor (so I don’t cut myself shaving anymore which I did now and again on a couple bumpy spots) and my soft toothbrush replacement heads for my electric toothbrush. Also got the Paul Mitchell Three shampoo which is supposed to be great for chemo. Supposed to use it as a body wash in addition to shampoo as chemo will come out the pores.
I have my “chemo bag” ready with my cancer binder (they gave me at UCH) some medical history stuff, and my plugs and doodads for my iPad and iPhone. My iPad has tons of songs, games, books, and I’m going to start downloading movies and shows to it as well. I guess instead of the cancer binder UCH gave me I would have rather had that binder full of women that Romney had but you play the hand you're dealt.
Thanks to all of you for your kind words, thoughts, positive vibes, and prayers!