Are We Done Yet??

I am so done with this whole cancer thing. I'm done talking about it, researching it, thinking about it... I'm just done. Except I can't be done. Nope, I still need 36 rounds of radiation!! Aaarrgh! (Yes, it has been a snarky kind of a day.)


So I've decided to make a nuisance of myself at the hospital! I might as well have some fun with all of this and I started with my first radiation consult this morning. Those lucky people!


I was really hoping to get started quickly so I could be done quickly. All along I've been told I need 6 weeks of radiation so in my head I was thinking I would be done on April Fools Day. Turns out the joke is on me and I can't start until at least the 28th. And I need 7 weeks plus 1 day of treatment so that puts me done on April 18th. That just added 2.5 weeks to my kicked cancer's a$$ timeline!! I tried mighty hard not to let that happen.


The doctor told me that he likes to wait at least 4 weeks after surgery to ensure the incisions have healed. I showed him my incisions and told him that they're already healed so no worries... strike one.


The doctor told me he wants to give me time to regain mobility in my arm so that I can raise it above my head for treatment. I told him I'd raise my arm above my head today if we could get started... strike two.


The doctor told me that they would be placing three small tattoos that will be used as markers during treatment. I asked if he could make them heart shaped... he said I could do anything I wanted... after they were done using them. The man is good at my game.


He told me he needs to have a planning session with a CT scan and then another appointment for a dry run before we can get started. Fine. I gave up.


Get this... I have to hold my breath during radiation to get my heart out of the way. Can you believe that?? All of this sci fi fancy stuff and I have to hold my breath?? Since my former cancer was on the left, my heart is in the radiation field. They say that when you hold your breath with your lungs filled, your heart gets narrower and longer moving it out of the radiation field. He even showed me fancy pictures of this. So over the next week I have to lay on my back with my arms over my head and practice holding my breath as long as I can for 5 minutes. Tyler and Ryan are going to have a field day with this exercise!! On top of that, they're going to put some sort of box on my chest that will detect me breathing so it can stop the machine. The less I breath, the faster I get done. Think I can hold my breath for a minute? He said the average is 20 - 30 seconds at a time, but I am not average.


Oh, and remember the surgeon who said that the number of nodes doesn't matter?? Well, if it doesn't matter then why did this doctor feel the need to confirm I had 30 nodes removed and then exclaim "impressive"? Yes, I did have 30 nodes removed and it doesn't feel good, but I'll still get my arm over my head if you would just START now.



I will receive 28 rounds of standard radiation and 8 boosts. Thanks to that 1 node with the microscopic bit of cancer, my clavicle/node area will also receive radiation. Fun stuff I tell ya! I'm told that my chances of a local recurrence with a mastectomy would have been 7%. With a lumpectomy alone it would be 14%, but by adding this radiation it goes down to 8%. So, we'll do the radiation... every day except Saturday and Sunday... for 7 weeks and 1 day.... starting February 28th. Ugh!


I was successful in obtaining my prescription for the drug I'll have to start taking the day after radiation ends so I can get that set up through mail order. And another script for a compression sleeve. At least I accomplished that today! I also told Dan that we're going to have to drive 45 minutes to a durable medical equipment store even though there is one 10 minutes from the house so I can look at pretty ones. We both know I won't choose a pretty one because it isn't practicle enough, but I still want to look. He must love me! Lymphedema doesn't sound like a lot of fun and I want to do everything I can to avoid it despite what the surgeon says. Maybe there isn't evidence that a sleeve helps, but at least I feel like I'm doing something. He's not the one at risk for a swollen arm! I intend to keep my wedding rings on from now until I die... in 50 years.



I participate in a forum called the Young Survivor Coalition and there is an on-line group for people going through treatment at the same time. It is a great resource and good place to go for a reality check. One of those fine young ladies coined a term today called Extreme Lymphedema Paranoia (ELP). I love it!! It describes some of what is going on with me perfectly... and it is so nice to know I'm not alone in my craziness. So from now on when I start to get concerned about a side effect that I am not experiencing, just know it is the ELP.


I often stop and wonder how I got here. This is such a bizarre alternate universe. I hope I wake up soon.


You know, they call anyone who has been diagnosed a "survivor" from the day of diagnosis. Isn't that a bit weird? I have to say that I don't feel like a survivor... maybe a pin cushion... but certainly not a survivor. I need active treatment to be over so I can be free. Maybe then I'll feel like I survived.


I will meet my grandchildren. I have to. I already have toys set aside for them.