I Am Not A Hypocrite! (TFIOS Pre-Review)

Phew! I am beat. My counts are pretty high right now so my doctors have been increasing my chemo doses the last few weeks and I’m really starting to feel it. Either that or I’m feeling tired because I haven’t been able to exercise because of my hip issues/surgery incision. Fortunately, I got my MRI today and will hopefully know tomorrow what the deal is with the bum hip! Praying that it will not effect my running. I’m also feeling a little weird because I’m hoping my counts have dropped enough that they will lower my chemo again. Who wants their counts to be low? Just me.. okay. bye.

So I’ve decided to start reading The Fault In Our Stars by John Greene. In case you haven’t heard, seems like a fictional novel about a cancer patient/teen romance type deal. I’ve been skeptical about reading it because I know that it’s about a cancer patient. I don’t really know anything else about it except that it is being made into a movie. Both of these things make me feel a little bit uncomfortable about it. I first heard about the book while I was deep in chemo and knew that I didn’t want to read it then. I was too emotionally fragile to read about anyone else’s cancer, especially if it was fictional, while I was dealing with the real thing.

The truth of it is that nothing you see on television or hear from other people is going to define your experience with cancer. It is absolutely unique in every aspect for each and every person effected. That’s the truth, and that’s what matters. With that said, it’s hard to keep that in mind when you’re actually going through it. I was constantly comparing myself to other people who had cancer. This person lived, this person died, this person was horribly nauseous, this person had a horrible reaction to that chemo, blah blah blah. Eventually, I would remind myself that these people are not me, they don’t have my cancer, they don’t have my markers, they don’t have my doctors, they don’t have the same body, they are different. We all are. That said, they only way I was really able to solve that problem for myself (during chemo) was to avoid at all costs any stories of other people with cancer. Thus ruling out reading/watching/participating in TFIOS.

When I found out that they were making a movie about it, I became even more suspicious. As most people who have experienced cancer/chemo/radiation know, Hollywood loves to dramatize the experience. That’s great for Hollywood, but not great for people who get diagnosed with cancer and know nothing but what they see on TV, which seems miserable and awful  (i.e. me). Literally, the first thing my nurses said to me at the hospital when I was expressing my concerns was that I should throw anything I’ve seen on TV out the window. This worries me. I cannot support anything that will get so much publicity and touch so many people if it is a misrepresentation. There are already so many misconceptions about cancer/chemo, the world doesn’t need anymore false information. I don’t want anyone else to be as unprepared as I was for a cancer diagnosis.

With all of that said, I’ve been thinking about it a lot and both of those reasons for not reading the book are flawed. First of all, I can’t literally judge a book by its cover. I honestly don’t know anything about the story. All of what I just said is complete speculation on my part and I’m not down for that. Also, I just argued that everyone’s cancer experience is different, therefore, who am I to judge whether or not the characters/plot of this book are accurate or not? How will I ever know if John Green is dealing out “misinterpretations of cancer” if I don’t read the book? Therefore, I must read the book. At least then I will know the truth of it, either way.

Please comment if you’d like to share your perspective, but don’t spoil anything!

Stay tuned for my new review after I read The Fault In Our Stars! Hopefully will have it done by the time I get back from Ireland.

Thanks for reading!

xoxo Kathy

Post Port Removal Portlessness

***Warning, the second image is of the procedure site, therefore a little bloody***hospitalgownswagger

One year and one week later and I am now port free! The surgery went well and after a day of recovery spent sleeping off anesthesia and pain medication, I am feeling like my normal self again. The pain was much less than getting the port put in, in fact today I see no need for meds and only feel a bit of discomfort around the area.

If you watched the video I posted the other day (click here), then you know that I was feeling a little apprehensive about the whole procedure. There were two reasons for this, one being that I did not have the best team of doctors/nurses when I got the port put in, and the other being more based on superstition.

Fortunately for this procedure I had an amazing medical support team. Everyone was so kind and comforting. If I’ve learned anything through this experience, its that you have to trust your medical team. Having faith in the people who are taking care of you just makes the whole experience more tolerable. Sometimes the only thing that gets you through the pokes, prods and constant hospital visits is knowing that your going to get to see your favorite nurse/doctor, etc. Most of my nerves subsided after I met the anesthesiologists and nurses who would be with me during the surgery.

stabwound

They were definitely nothing like the surgery team I’d had the previous year who seemed grumpy and upset with me, the patient, throughout the whole process. I specifically remember feeling anxious when I entered the OR, anxiety which only increased as I could hear my heart rate steadily increasing on the monitor. Instead of some kind words from the people around me, the anesthesiologist told me to “stop freaking out.” This was the last thing I heard before I fell asleep. Things were no better when I woke up several hours later to the same man berating me for gagging as they pulled the intubation tube out of my throat. These things might not have upset me so much had this not been my first procedure after being diagnosed with cancer a few days earlier.

Having had this happen, I am so thankful that the rest of my experiences, including my removal process, have been with some of the most amazing, kind and loving medical staff on the planet.

My other fears for getting my port removed where quite silly. I was beginning to tie my port and it’s placement in my chest to my remission status. Any apprehensions that I had for getting the port taken out which stemmed from these thoughts and fears was illogical, and I knew that. This is why I went ahead and removed the port. I knew that I couldn’t make this decision out of fear. My cancer will not come back because my port is gone. If it comes back it will be because that is what is meant to be. Keeping/removing my port will not change that.

All in all, I am glad that I did not feed these fears by cancelling the procedure. I feel the same without it as I did with it, happy and healthy!

Hope you all are having a lovely start to your week!

xoxo Kathy

Thursday

I know, I know. I didn’t post anything for Wednesday, but I had an awesome day so I don’t regret it! And I’m not going to let a small lapse keep me from continuing on in my quest to become an avid blogger, so here is a quick video of me blabbing about my upcoming port removal surgery. Hope you enjoy it! Off to the gym for me!

Port_Love

Tuesday

I literally almost just went to bed without posting anything because I TOTALLY forgot. I’m actually in my bed right now writing this on my phone. Hmm… I don’t really know what to write about. Today was fairly average, ran some errands, took another trip to the dog park and did some work that I have been putting off. I’m excited to go to clinic tomorrow for labs. I love seeing everyone, especially since now I don’t get to see them as often as I used to. I think this visit is the last time they’ll be able to access my port before I get it taken out next week. It’s so crazy, it’s like exactly a year from when I got it put in.

I remember waiting for so long to get it put in. I kept getting bumped off the surgery schedule because I was in-patient. And then when they finally put it in, the anesthesiologist I had was really mean. It was one of the worst parts of my entire treatment, but I think that was only due to my specific circumstances. I was pretty freaked out to get a port because I had no idea what they were. Up until a week before I had one inside me I had never even heard of one. An IV nurse that I had at my first hospital showed me here and let me touch it, she had one that stuck out so you could see the outline under her skin. I started to understand the value of the port after being in the hospital for a week plus without one. I was getting poked four times a day for labs plus the IV that was already in my arm, that’s upwards of 30 pokes in one week. Day, night, I would literally wake up to someone leaning over me, trying to stab me with a needle to get labs. They started running out of good veins pretty quick and had to get crafty, placing lines on the tops of my hands, on my bicep, on my forearm. I still have bruisey looking scars from those IVs. Top of the hand was my least favorite, I swear it scarred me for life the first time the nurse put one there. Now it’s the only place I’ll let them put one, haha. Thank god for numbing cream!

After my scarring IV experiences, I was actually quite relieved to have the port. It brings the term “one and done” to a whole new meaning. At first, I could feel the port in my neck which I didn’t like. I often tip my head to the right as a quirky way of calming anxiety, the port disrupted this coping mechanism at a very crucial time. It was also annoying for sleeping because I felt like I couldn’t lay in certain positions. Over time, I began to feel it less and less. Now I can sleep however and tilt my head however, without feeling it at all.

At my hospital, everyone is prescribed numbing cream for their port, to numb the area before they poke you. At first I used the numbing cream, but after leaving it in the wrong car so many times I finally bailed on the whole affair. Being that I am treated at a children’s hospital, it is very uncommon for a patient to not use the numbing cream. I’d say it’s also less common for the patients to be as to have adult conversations with their nurses. If I had a Nicole for every time a nurse asked me how it felt to have the port put in I would have.. Like 50 cents. My response was always the same, “well, it feels like your stabbing me in the chest with a needle.”

All in all, I’ve really grown to love my port. I’ll do another post about it when I’m actually going to get it out next week.

All right. Well at least that’s something, and it’s more than I thought it would be! I’m going to bed y’all.

xoxo Kathy