This is going to be a difficult post to write. I am actually going against my natural grain and writing about an very agonizing moment. Usually I like to keep those private so everyone thinks that I am doing well, being that 'warrior', really courageous and all those other positive adjectives people use when they see me.
Yesterday, began very uplifting and fun, visiting old neighbours who I hadn't seen in ages and introducing them to my granddaughter. It was great, especially since they had known my daughter when she was just a child and so it was awesome for them to see the next generation. One thing I found neat was she kept saying "she looks so familiar, but that is because she looks like you guys"....lol It's true, if she ever got lost you could put a postage stamp on her and the mail person would know exactly who she belonged to.
Unfortunately my day did not continue in that vein. I had an appointment with one of the surgeons...the bone man as my Mom would say. I wanted to see him and hear what he had to say about the surgery and maybe answer a few 'bone' questions that I knew my oncologist wouldn't be able to. Well, as in all teaching hospitals you have to meet the resident or student doctor first. I am used to them not really have a full grasp on my case, especially since it is a very unique one, but I wish they would at least familiarize themselves to some degree before coming in the room. They never do and their questions are very telling. So in she comes and first question :
Have you ever been here before....
Have you met with Dr.... before? Then before I answer she looked at my brace and said....did you have that before the surgery...problem with your knee?
No, this is a result of the surgery. My leg is paralyzed from the surgery.
Goes to computer looks at information and then states....You wanted to know what type of cancer you have?
When you were operated on you didn't know what type of cancer? Isn't that why you are here?
No, am I going to see Dr....? and Yes I did know the type of cancer, I have had it for 14 years.
If you want to you can see him.........(why else would I have come?....my inside voice of course)
Then the zinger: Well the pathology shows no malignancy. (totally bent over the computer not even looking at me)
WHAT! (I go pale and almost pass out....but she doesn't know bc she isn't looking )
It says that the tissue samples they took....they took an awful lot too.....you had small bowel extraction too right?....well it says 'no malignancy '......(she turns to me smiling thinking she is giving me wonderful news and I am going to be so happy)
I am stunned and angry: Are you saying that I have lost the use of my right leg and there was no cancer? They put me through all this and now they are saying there was no cancer in the bone? (should probably read that as all caps bc I am sure it wasn't said in a quiet voice )
At this point I have almost had an anxiety attack...seriously....my heart is pounding, my brow is sweating and my hands are shaking. Have I really gone through this hell to find out that they were wrong. You see, they are never a 100% sure till they go in and have the pathology done, so there is always that very small chance they were wrong. I know that but it has never happened to me. My whole world was starting to collapse around me.....I couldn't believe the physical reaction I was having to this news.
I said, are you sure you are not reading the pathology of the margins they took and not the ones of the actual tumour? I mean they removed the bone and nerves because of a tumor.....now it shows it wasn't cancerous.....are you sure?
She begins to back pedal and says "maybe we should talk to the doctor, this is not a very common situation and I am not sure what it may mean." She then gets up rather quickly and goes to get the doctor. (the same one I was going to see 'only if I wanted to') Meanwhile, I am literally shaking in my seat, even though I know at some level she is reading the report wrong.....it would be a nightmare if it is true. Now, don't get me wrong, not having cancer is a GOOD thing, but having lost what I did is not the way I want to find out!
The doctor comes in and it is obvious she has told him her 'faux pas'. He begins the conversation saying: "negative malignancy is what I wanted to see....those were the samples within the margin that I worked....this is a good thing". (Patting me on the shoulder and looking directly at me) I deflated like a balloon and almost burst into tears. He was aware and was very supportive and apologetic. He is a very nice man!!!! Needs to train his residents better though ! So, I am back to having cancer....all is normal again lol.
Then he told me about the surgery. Although I had heard about it from my oncologist, the resident who assisted, the nurses on the floor, for some reason his account was the most difficult to receive. I think is was his humility. He said it was a very difficult surgery, and exhaustive. He said it so sincerely and with such conviction it actually surprised me and I told him I thought it had been 'without surprises' meaning great. He said that was because they had planned very well and had even planned that morning with the radiologist. But, he said it was a long, very hard surgery especially for my oncologist. He felt that his part was minor in comparison. He said:
My part was very small in comparison to the whole surgery... but
I think your surgeon was a little surprised when I arrived in the OR with my saw! You see that is how we cut bone....with a motorized saw. I think he was a little thrown off by that (and then he laughed). Not a tool he is used to seeing in the OR....LOL "
I imagine he would be!
He then went on to say that my oncologist agonized over cutting the femoral nerve, knowing it would leave me paralyzed on the right. He said it was very difficult for him to come to that decision even seeking his opinion on the matter....it was decided that they needed to get the best margins possible and that was only going to happen if they severed the nerve. The tumour had grown right through the nerve. The point of the surgery was to give me the best possible chance and results. Not always an easy call. I understood my oncologist state of mind......
I have agonized over this consequence too! Wondering if perhaps I had gone too far in trying to stay ahead of the cancer. So when he used the word 'agonized' it resonated with me. It also made me realize that I was not the only one dealing with this surgery at a visceral level. It was a team effort all the way....from the beginning to the end....even the negative had affects beyond me. I had people in my court who were as determined and with mixed emotions just as \I was.....I no longer felt alone in all this.
Now, I know how extensive and huge this surgery was. I have spent the last few months trying to just get over it and move on. I don't feel like that anymore. I feel like I can actually take a step back and realize that I will be in the healing mode for some time and its ok. My worth is not dependent upon how fast I can get back to some kind of normal. I like to be able to overcome things quickly and move on......not this time. I am going to rest a bit longer, be a little slower for awhile more, and not worry about having to make huge leaps and bounds to prove I can overcome this particular adversity. There is a freedom in that, but also a surrender. I am not good at surrendering but I am determined to learn. If the surgeons are still dealing with the surgery and its consequences who am I to look as if I have moved on.
This doctor looked at me with complete humility and said "it was a huge surgery Elizabeth, and it will take a very long time for you to get over it......if you actually ever will, your body has been changed forever because of it."
I think I needed to hear that and be given permission to NOT be a warrior, not strive to be the perfect patient, not be more than just human !