Can you bling or have lights on your port?

Lesson learned (lost track of numbering): you always want a surgeon who thinks your surgery is “no big deal” and acts like cutting you open will be the same as brushing his teeth. We arrived to the surgery center or arctic zone as we like to call it with minimal issues of traffic. I was greeted with the usual paper work and copies of the HIPAA stuff that I could make my own coffee table book if I kept every single one of them. Of course, I looked around the waiting area and realized that I brought the average age down to about 70. Then, we heard the complaints of people waiting too long and a few whines, but in minutes I was called back. My first nurse looked shocked to see me and kept shaking her head in disbelief. She said she read my chart (and I reminded myself that on paper I look pretty bad) and told me that I had been very “busy” and then followed by the “why didn’t you get a port in 2010?” I answered that maybe my doctors were so optimistic that I would only have to do chemo for 6 months (even though I was thinking that getting a port equals an admission that I am a person with cancer). Regardless, I was thrilled that this nurse really read my chart even the small details. I was told that I could keep my underwear on only realizing that I should have worn better underwear. It was as if I felt that once they would start the surgery the “audience” would say, “check out those undies”.  Then, there was the question of my last anesthesia which was something I could not explain since Jim was the one there. Jim came back to explain my inability to start breathing among other details he would have liked to have forgotten. While waiting for the audience of residents and more nurses, Jim googles the surgeon, so we know what he looks like. Each time I am met by a new audience member, there is this look of either disbelief or depending on the experience level look of fear of saying the wrong thing. I am very familiar with all the looks and just joked that once I put the surgery cap on that someone better promise to give it back since my hair was still falling out and I want to “glue” it back on.  I also asked if there was a way to put lights on this port since Alex would find it cool to have lights under my skin. My surgeon thought it would be a good idea to have personalized ports. Once we met the surgeon, he sped through the part cutting my neck open to reach my jugular vein and Jim and I stopped listening. Again, I was reminded that being thin in the wrong places only increased other issues. Of course, I joked that I really should get a butt port and wouldn’t that be funny for the infusion center nurses. I kept thinking to myself that they think that they must have started the IV drip for surgery even though this was my typical behavior. Yes, I know I have been through a ton and it has only been 2 plus years (feels like 10 years). My anesthesiologist was amazing . Even though all the audience was convinced I would have the IV in my feet, he found a vein to use that others would have needed an ultrasound to find. More nurses came in and I lost track of names and their individual jobs. Soon I was wheeled into the operating room. The IV was started, but I was only a bit dizzy and kept thinking that I really did not want to see anything. As I was looking at the ceiling and deciding that it needed to be repainted, I was in or out hearing Beatles music and other 70s music making me think that my surgeon was in his 50s. I heard voices, but didn’t hear what they were saying. VERY STRANGE. Next think I knew I was on my way to recovery remembering the last song I heard (only to forget it now) and was talking to my anesthesiologist nominating him for anesthesiologist of the year. I was not foggy, but not clear. I kept telling him my neck hurt and when I was breathing my lower shoulder, front of rib cage area hurt. I felt fully awake, but nurses felt that several “pushes” of percocet would do the trick. Nope, still hurt when I was breathing. They started with oxygen and had to take a chest xray to ensure the device was placed correctly. More nurses reviewed my chart and seemed like they didn’t want to deal with me since I wasn’t the straight forward case. Luckily, I found my nurse who chased everyone to figure out what had happened. Next chest xray had to be done since my lung could have been punctured like a balloon with a pin hole leaking. My pain remained while I was breathing, but my neck was somehow feeling good AND I could not feel anywhere on my chest. I decided that was a good thing since I later noticed the amount of blood on my gown. Of course, no one wanted to sign off on my chart since I was a mystery. I joked and said what could be worse than cancer? I was convinced that I was okay to go since I could breathe and my nurse discussed that I could have pinched a nerve or the residents discussed referred pain. Finally, the chief of something signed off and we were ready to go. Only I could not even dress myself and why didn’t someone explain that I wouldn’t be able to lift my arm or move my neck. Thank goodness for my zipped sweatshirt. I definitely needed a wheel chair and gave into the process.

When I looked in the mirror in the car, I realized the extent of the bandages since I could not feel anything below my head. Yikes, I was definitely not going anywhere for a couple of days and I could not drive since the more I move, the more I bleed, and the more time it would take to heal. I laughed to myself thinking I was going to watch Alex’s band concert looking like a real weirdo with bandages around my neck and chest AND with no bra on?! Let’s not take away from the middle school band performance. Plus, any movement now feels as if someone is stomping on my neck and chest.

Last night, my junior doctor Alex started with his questions about having the port…would it decrease the time of infusions, would it still hurt, would the chemo get in my whole body faster, how do I go through security with it….Yikes and double yikes. I started reading the booklet they gave me. Oh great, it came with a scanned bar code and a souvenir bracelet, plus a lot of diagrams which I handed to Alex for his medical review. I asked if he wanted the bracelet and he thought I may need it. I kept thinking of the t.v. show Homeland and wondering if Abu Nazeer could access my port with this bar code and do some remote chemotherapy? Okay, I still must be drugged.

The surgery center called this morning to ask me about my breathing. Guess since I am talking, my breathing is fine, right? I asked about the bruising and how long I would have to look like a Halloween zombie or someone who had been beaten up. They said all of that was normal and I said that I hoped they realized that it was NOT turtleneck weather and how would I wear one since I could not raise my arms. I guess I could go back to the Euro scarf look or just go back to bed with another pair of pajamas on. The surgery center asked about the bleeding and reminded me that I needed to stay still for one more day and not to remove any of the bandages. I promised and decided not to ask about online shopping.

So, it is official. I am a chronic cancer patient. I realize the truth about my history on paper, but I know I am so much more than my history. I am reminded of that when I met each one of my “team” for this surgery who are equally impressed with my crazy attitude. I can continue to face tomorrow with much hope and determination despite any words on paper. I cannot let the cancer define me even though it tries to take control of some of my days. I will continue to make the most out of each day and savor every moment that I am here.

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4 Responses to “Can you bling or have lights on your port?”

  1. Lisa Says:

    Sending lots of hugs & love Joanie!!

  2. Diane Peters Says:

    Would you like me to come over and “bedazzle” your port for you?? Sending all my love and hugs your way! (And as always, prayers, prayers and more prayers)

  3. Rhonda Lundquist Says:

    My port is my bumpy little friend!

  4. Jen Portnoff Says:

    Happy Hanukkah to the bravest strongest woman I know

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