Thursday, October 6, 2011

To Cyber or not to cyber....

I am going to write this today, but I am not sure how it will come off. I had a very good appointment. I like the doc very much and please know that my intention is to pro tray an accurate account from my perspective, but these appointments can be very complex and while I follow most of it, I cannot always remember the words that they use and I certainly cannot spell them, so here we go.....I met with the Cyberknife doc yesterday. I got there at 10 for my appointment and I saw him at around 10:50 - that is like lighting, so I was impressed. He had clearly gone over my medical records and understood my case well. He reviewed it with me. Do they they know how upsetting that is? It is like reliving it....."You must have been diagnosed right after your second child was born? That must have been rough. And metastasized cancer at, you have really been through it."...."Yes, when I received your file, it is on its third volume and lays flat at about 6 inches tall. When I think that every single piece of paper represents a day in the hospital, it reminds me how much you have been through." I have learned to separate myself from this dialog. I can speak about it like it was not really me. It is the only way I have figured out how to deal with it. So, now we get into the appointment..."textbook theory says that we should treat this with a more systemic approach (meaning chemo) because we don't know if tumors feed other/new tumors or if it was always there and we couldn't see it, have you ever been told that?"...."in your case, you have done so well with alternative forms and after lung surgery, you were in remission for over a year which would lead me to believe that this could have the same result, but it is hard to know"....."if we can do no harm, that would be the best, but your case is interesting because we usually don't treat three spots at a time" (yep that is right THREE)....."There just are not a lot of cases like yours. You are so young." AND that is where I stopped him....."Yes, yes, and I am still alive." "Yes, and in good shape. Your lungs don't wheeze and you don't experience shortness or breath (am I supposed to?), you look very well (am I supposed to look like crap?) and after everything you have been through (ENOUGH ALREADY!)....." (Trail off onto another thought). So, here is the skinny....he doesn't know if cyberknife is the way to go. I have three teeny tiny spots in my left lung. One in each lobe which explains to me why my surgeon said he would do too much damage. They are not close together - where did I get that from!?!?!? I also have a slightly larger spot on my right that apparently has been there for a while, but does not light up on the PET. Because cyberknife uses gold marker to track the tumor, that would be markers in three spots in my left lung which means there is a 50% chance of a phemothorax (air leakage out of my lung). I was like, "Been there and done that. I can do it." He looked at me like I had six heads and said, "Yes, but I don't want to." Can I say, whimpy???? Apparently, there is software that will allow the machine to do it WITHOUT markers, but the physicists that do that part "are not comfortable" with it yet......I was like, "With that personality type, they never will be. Give them a deadline and tell them I am coming!" Apparently, it doesn't work that way at Swedish. WHATEVER. So, now my case is going up against the tumor board on Friday morning to discuss this. His immediate thought was that we would do general radiation, but he is not sure whether we should do all three spots at the same time or not, but they are small so I could probably handle the radiation......yadda yadda yadda." As for the left, he is thinking about treating it. It may be a "Do Three, Get One Free" deal. I am not sure. He went over all the possible things that could go wrong and honestly, they have NOTHING on radiation to my ASS. When I reminded him of that, he was like, "Well, yeah there is have been through it. (Really - more of that?)Here is the good news, "None of these (spots) are life threatening right now, so we have some time. We will come up with the best treatment options with the highest probability of success with the least amount of risk, discomfort, pain,......" So, Monday he will call me (I asked him not to call me Friday) and tell me the plan which will not really be the plan, it will be what tests I need to sign up for so that they can research whatever initial plan they discuss on Friday, only to be changed possibly....this could take some time, and secretly, I am hoping it take to about November 14th. As for this weekend, I am going to enjoy my anniversary with my husband. Seventeen years on Sunday. Happy weekend, Ang


Anonymous said...

Congratulations on 17 years :)
Sorry you are doing a merry-go-round ride with the doctors. I don't think they understand all the extra unnecessary stress they put their patients through. Hopefully someone on that board will stick up for you.
Best Wishes...

Vicki Olafson said...

Happy sweet anniversary to you and Grant! WOW - 17 yrs. You are truly one tough cookie!! I'm hopeful the board will pick the right path for you and god help them all if you get hold of them with questions or concerns.
Hugs and love

auntie jane hainsworth said...

Happy Anniversary and Canadian Thanksgiving. LOve Jane

Carol said...

Hope that you have a great anniversary, and a good week end.
Thinking of you,

Anonymous said...

Somewhere in your family history I believe you are related to that famous American Admiral who said "Damn the torpedoes, full speed ahead" of course in your case it is "Damn the Tumors...."
Congratulations on the 17th, it is a big milestone and both you and Grant deserve some time to enjoy it. love pat&mag

Laurie said...

Holy Cow -- 17 years! You two are as adorable as ever. Hope you enjoyed the weekend.

As for treatment, you really are in wonderful hands. I am so grateful to your medical and support teams for their incredible care.

Love you