Monday, October 17, 2011
Well, turns out I was neither in trouble or brilliant, BUT I got all that I wanted. I am the first on the table for Cyberknife with the software (meaning no markers in my lungs), but they need one month to install it and 2 and a half months to test it. So, we are buying time. How Hank wants to handle that is that I get ALL my trips, but right after my last one in mid November, I have to go in for a PET/CT. It I am stable, we wait. If there are more, I am probably back in chemo, BUT if they stay to three and just get bigger, we will buy time by doing chemo light which isn't so bad. So, there is a chance that I could have the holidays W/O chemo or on a light chemo and that would be just fine by me! Happy Monday, Ang
Posted by Angela Clarno at 9:23 AM
Wednesday, October 12, 2011
I used to eat breakfast. In fact, I really like breakfast; however, now, by the time I get to breakfast, Nolan has gotten a hold of the kitchen and is doing his daily recipe. (I have limited him to one a day.) Recipes with Nolan will not only curb your appetite, they eliminate it. For example, today, he made flour, sugar, brown sugar, cinnamon, and egg yolk. Okay, that wasn't so bad, but then he added rubbed sage, soy sauce, salt, baking powder and whipped cream. Then, he required me to beat the egg white into stiff peaks (he actually said, "Stiff, not soft Mommy.") and put it in the frig until tomorrow for waffles. We are currently simmering the flour, soy sauce, sage, cinnamon, salt , sugars, baking powder, and whipped cream on "2" for 51 minutes. If this is how chefs are born, I have a new found respect for their mothers.
Posted by Angela Clarno at 9:29 AM
Tuesday, October 11, 2011
So, Grant and I returned from a short trip to Galiano Island for our anniversary. I crossed the border (Galiano is one of the Gulf Islands on the Canada side...) with my new passport. It was the perfect getaway. Grant and I haven't been somewhere that sleepy since getting a flat tire in the "little car" in Tahis which is a wickedly long story that I tell WAY better than Grant does - stupid Karst topography! Anyway, we had a great time. The food (when it was available) was EXCELLENT, the hikes breathtaking, and the kayak trip amazing but only after the safety orientation that freaked me out so badly, I escaped before we did the dock dismount screaming, "Yes, I have sunscreen!" (very thorough orientation) and promptly ran into a boat in the harbor. I was fine after my mental readjustment of, "S..T, I am GOOD at this and I have bigger problems than F.....N sea kayaking!" :) Monday morning, I got the call with the plan. It started with, "You have been the topic of conversation with lots of people the last few days....after discussing it with all of them both Friday and today, we have decided that (basically) to do nothing because general radiation had a higher probability for doing more harm than if we waited to see if 1) they grew or 2) they spread. Now, I know that hearing, "Do nothing for three months" may sound scary, but I actually get it. See, there is a kind of art form to this and if, say they did general radiation and something then popped up very close to that area later, we could do more damage than good, and we could be SCREWED. That is why they originally wanted to do Cyberknife because it is WAY more accurate and, still dealing with the collateral damage that I have from my pelvic radiation, I get it. He explained it so much that I actually stopped him and said, "Four and a half years ago I wouldn't have understood this, but remember I have had pelvic radiation. I know what you are saying." Now, you may remember from my last post, he didn't want to do cyberknife because there would have to be too many markers put in for three spots in my left lung and there was too much of a chance of a hole in my lung, BUT there is software out there that can do it WITHOUT markers but the physicists are not ready yet....well, listen up....SOOOOO I said, "You know, I have been thinking a lot about this too, and I actually have some thoughts. May I share? "Absolutely!" "Okay, I get that we do nothing, but I was on chemo light..blah...blah...blah..and it worked on my lungs taking away all the spots. My life was actually okay on this, so how about I work with Hank, but I think I could buy some time using that or waiting, whatever Hank thinks, but in the meantime would it be at all possible for me to meet the physicists to talk to them, help them, whatever to get to the place where they are comfortable with the software, the "marker" issue then is gone (no lung leakage), and then we can do cyberknife? I know this may be out of bounds for a patient, and not possible, but if I were able to "be real" it may help, but I don't want to be presumptuous...." Pause because he pauses a fair amount. "I think it is an excellent plan. Better than ours." Pause. Pause again. (I am doing something between an imaginary high five and cheerleader jump - silently, or course.) "Okay....so....where do we go.....I will talk to the docs with this plan, but you have to see Hank this week and discuss this with him....and I will talk to my physicists and, either the idea of you wanting to meet them or if you do, this will be good." "I don't mean to be pushy, but I am interested and sometimes interest motivates." "Yes, it does Angie - excellent." I meet with Hank on Friday at 3:20.....God, I hope I am not in trouble, but it is all I got and my Mamma (and Pappa) taught me to use what I got (legally of course). Love, Ang P.S. By the way, they have all concluded that the "spot" in my right side is so stable that it is most likely and believe that it is scar tissue. Angie 1 Cancer 3; more to come...
Posted by Angela Clarno at 3:33 PM
Thursday, October 6, 2011
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 that...wow, 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 that...you 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
Posted by Angela Clarno at 5:01 AM
Tuesday, October 4, 2011
So, my consult is tomorrow for cyberknife. When I have told people that I am going to do cyberknife and they either have me spell it or they say, "Wha?" I just tell them it is the last of cancer treatments that I have NOT done and I don't want to leave any stone unturned - y'know, like my Mom and turkey recipes. I am excited for tomorrow. I have seen cyberknife in action through my cancer buddy, but I have never done it myself. I hope that this works. On the home front, my life is blissfully normal. I have even felt that I can take another kid on afterschool for care - I know, am I high??? No, I adore her and if she needs it, I am ready for it. Also, the aftermarket third row seat for my Explorer is coming soon! Which makes me feel like a real mom with drop offs and pick ups and carpools and everything that I want. Now, if I can just survive Nolan recipes that he makes up in his head of oil, water, dill weed, Johnny's seasoning salt, cinnamon, etc.......Love, Ang
Posted by Angela Clarno at 4:15 PM