August 2009. After radiation, Temador, and Avastin all failed to stop the tumor, and the surgeon had reduced the mass in Laura’s head, the surgeon and the same radiation oncologist who never showed up for the first “team” meeting announced that they were going to use stereotactic radiosurgery (SRS) to attack the pieces of tumor remaining along the edges of where the surgeon cut. To map out these sites, they needed more CT scans with contrast. Laura weighed less than a hundred pounds by this time. All her blood vessels had shrunk, along with the rest of her wasted body. It had been hard enough last August to find one of her small veins and get a needle into it.
Laura gasped in pain on the first unsuccessful stick. She writhed and grimaced during the second try. She had had many sticks during the last year. Some more painful than others. Some of the Avastin infusions had required more than one stick before they found the vein. Those hurt, but not like today.
The year before I had been sitting in a chair next to Laura’s bed while the nurses struggled to get the needle into her arm. This time she was sitting on an examining chair, somewhat raised, with me in a chair about two feet behind the nurse. I was facing Laura. I had never seen someone being tortured before. In real life. Even with a movie as disturbing as Closet Land, I could always tell myself it was only a movie. Not this.
When the second nurse struggled on the third try to get the needle in, Laura started to cry. All year she had never cried over physical pain. Not even the gastrointestinal turmoil. Aphasia. Yes. The prospect of death. Yes. But not acute bodily pain. The nurses were full of apologies after they finally got the port in on the fourth try. My blood pressure went down. Laura relaxed a little, but was still weepy.
The black and blue mark from those sticks faded over time, but it was still on Laura’s arm when she died six months later. The physical confirmation of bodily harm that can help make the pain of one person real to another. Scarry (56)
Thanks, Mark. What used to drive my wife crazy was if I questioned what she meant when she used a word that to me didn’t make sense. She thought I was criticizing her. I learned to walk on eggshells or just to live with ambiguity. Although I don’t think it works to compare one person’s suffering with another’s, I’m not sure how my wife would have felt about living all the years you have with her condition. Metta.
Actually been there – done that (bad needle sticks). Trapped in the medical world, IV ports, blood draws and injections are SOP. During my last course of solumedrol they could only get a lock in the back of my left hand with the tubing going over my fingers – which was functionally not viable to be left permanently so everyday I had to go back to the IV center and get a new line started. All the “usable” veins in my hands and arms immediately collapsed no matter how much liquid I drink, and each day took repeated attempts to get a usable line in – sometimes up to five attempts. I went through this for a course of five days. You’re sick you hurt and your care-givers hurt you! I was amazed that this was the hospital area were the sphere of expertise was supposed to be only starting IV meds! I ended up having several other complications from this last course and have refused to go back for any more solumedrol treatments since. Obviously my “ordeal” was nothing like your wife’s, but I can relate to the specific of this blog entry – also in lesser degree to aphasia – in the MS world we have a condition known as dysphasia which is akin to aphasia but is not as acute – luckily in my case it is largely confined to “word scanning” and varies according to current stress levels; however, I do know what it is like to not be able to get the correct words out – and strangely, in the frustration of having other people finish your sentences for you – which personally drives me crazy.