Patience is not a virtue
So I finally started chemotherapy this week. This was not a smooth transition. This was after waiting a week to decide between chemo or a clinical trial. Then a visit to the ER for mysterious belly pain. At this point I had already decided that I wanted to go back on chemotherapy. My tumors are huge and I think the best bet would be to try and shrink them. The original meds did have a drastic effect on them but once the oxaliplatin was taken out of the mix, my progress seemed to slow. Looking over all the clinical trials most of them required that patients be able to perform light duties in an office or household. It was hard to face, but light duties have become extremely difficult with my pain level. Every day that goes by, pain becomes more and more painful. I haven't taken a pain free breath in months. Last Monday I went to penn practically begging to get started but of course the insurance company had to approve it and then pills would have to be delivered. I asked if there was anything else they could do in the meantime because in my exact words, "every day that goes by I feel like I'm closer to the end". My NP put in a request for an abdominal ultrasound to see if draining fluid in my abdomen was a possibility. She also offered a blood transfusion because my hemoglobin was so low. I ended up getting 3 bags of blood last week and an ultrasound that showed very little fluid but instead, massive tumors causing my discomfort. So this week I am at my wits end. Let's just say there was a lot of back and forth with the medical supply company and if they had it their way, I still would not be getting treated until some time next week. Every single day counts. Every single one. Not only am I racing against the cancer clock I'm racing against the pain one too.
And here is my point I'm trying to make after this long diatribe. Patience, my friends, is not a virtue. When it comes to cancer, being patient can be your biggest downfall. I'm dying. I don't have time to be patient or hope that everyone is doing their jobs efficiently. It is my responsibility to be up everyones' asses and make sure I get what I need when I need it. I apologize a lot to medical professionals for being overbearing but they always reinforce that I'm doing the right thing. I may sound like I'm some bad ass advocate but what you don't see are the times I hang up the phone and cry because I've gotten nowhere or the massive anxiety I experience knowing how many days I still have to go before treatment. The whole process is exhausting and maddening and I worry for those who don't have the physical or mental health to advocate for better treatment.
Back in the saddle again... Or more like a squeaky beige recliner
This past Wednesday I started back on chemotherapy. Because of the prescription company dragging their tail and because of possible severe side effects from the pill version of chemo, I am back on infusions. This time it's an 8 week cycle. I go every week for 6 weeks and then I have 2 weeks off. Every week is the 5fu chemo and every other week is the oxaliplatin ( I'm just realizing how boring all this med talk is. Sorry.) Oxaliplatin is my arch nemesis. It caused most of my horrible symptoms in the beginning and they are already rearing their ugly heads.
Cold sensitivity. Check. Blind spots. Check. Leg cramping. Check. Neuropathy. You betcha. So far these effects are milder than in the past but I know they have a tendency to get worse with each treatment. Fingers crossed. Legs crossed. Eyes crossed.
A chance meeting
I wasn't sure if I was going to share what happened to me last week because it left me a bit shaken. However, if it gives someone in my life a sense of closure then it's worth it.
Last Friday I was at UPenn all day. I had an hour to kill before my blood transfusion so I decided to grab my phone charger from my car. While waiting for the parking garage elevators, I smiled at a man who had just made a joke about someone's phone ringing loudly. He took this opportunity to ask me if I was from New Jersey and proceeded to tell me his story. He was a teacher in Burlington county, he ran into some car trouble, and he needed a few dollars to get home. I told him I didn't have any cash but as we were both waiting for the elevator I proceeded to ask him his name, what school he worked at, and what subject he taught. He got on the elevator going up. And that was it.
But that wasn't it.
Because that wasn't the first time I met this man. The last time I met him was seventeen years ago while I stood outside an elevator in Temple Hospital waiting for my sister to die.
I couldn't believe what just happened. I stood there for a minute debating what to do. Do I just let him go and that's it, do I call security, or do I go find him and rip his face off? This man had plagued me for years. When I look back almost 20 years ago I am able to put the pieces together. He saw me get out of my car in the parking garage. Being a Rowan student I had a giant Rowan sticker on my car. He travelled each floor until he found me. He gave me almost the exact same story except he changed it to really tug at my heartstrings. He was an adjunct professor at Rowan. He was visiting his mom who was dying of cancer (my mom later pointed out that he wasn't even on the cancer floor). And of course, he was having car trouble and needed a few dollars. He got 20 dollars out of us that day. Granted I was 21 years old, but I was not naive. I just didn't want to believe that someone could be that heartless and prey upon people at their weakest moments. Apparently, I was very wrong.
So fast forward and now this same man is preying upon people in a cancer center! And that's when I decided I was not done. I took the elevator up and found him sitting on a bench.
And the following was our conversation:
Me: Can I ask you an honest question?
Jack, or so he says: Sure.
Me: How long have you been doing this?
Jack: Doing what?
Me: Scamming people out of money.
Jack: (Shaking his head) I don't know what you're talking about.
Me: Yes, yes you do. And the reason I know you do is because you did this to me 17 years ago at Temple hospital
Jack: (who is now standing up shaking his head) I've never stepped foot in Temple hospital.
Me: Yes you have. You scammed me out of money. I understand that everyone has to make a living but this is what you chose to do? And for this long?
Jack starts to walk away so I decide to get up and head for the elevator. He then goes and sits down again. As I wait for the elevator I tell him how he scoped out my car last time and that's how he came up with the Rowan idea. How I looked up his name when I got back to school and he didn't exist.
And these were my final words to so called Jack:
"Just so you know, you preyed upon me while my sister was dying and now you are preying upon me while I am dying. If there was ever a day that I wished karma existed, it is today.
Have a nice life."
I felt strong on that elevator but by the time I got back to the office I was a shaking crying mess. The secretary calmed me down and had me report him to security, security then began checking the whole building for so called Jack.
I'm not sure how to take this encounter.
Maybe there is closure.
Maybe someone finally called him out on his evildoings.
Maybe he will never bother anyone at UPenn again.
All I keep thinking is what are the chances?