LeukoencephalopathyHere is the continuation of my story, to read the first installment, please click here.

The next morning, I woke up feeling.. okay. The doctors came in to do their rounds and explained that what had happened to me was a form of leukoencephalopathy caused by the methotrexate in my spinal fluid. I’ll be honest, I don’t really ask a lot of questions when it comes to medical deep medical mumbo-jumbo. I need to know a general idea of what, a reason why (if there is one) and what I need to do to make it go away. So the gist I got from the docs was that this leuko-business occurred due to an allergic reaction of sorts to the chemo. I usually sum it up as an inflammation of the fluid layer surrounding my brain. I honestly don’t know if that’s actually what it was but.. that’s how I always describe it.

The “antedote” for this reaction is.. cough syrup… no seriously. They stuck a tube down my nose and into my stomach to force feed me cough syrup.

As the day dragged on I began to feel worse and worse, nothing compared to the day before but I definitely wasn’t my usual chemo-ridden self. I became extremely nauseous, at least that was what I thought it was, and asked for a dose of zofran before I headed home. That’s right, home. Earlier in the day the doctors told us that my counts looked good and I could be discharged, a rare opportunity that my mother and I jumped at (it was my shortest hospital stay to date). This also meant that I could have the NG tube removed from my throat, but only if I could show everyone that I was able to drink and swallow on my own. Try swallowing with a tube stuck down your throat without gagging, yuck. I did what I had to do to get the hell out of there and choked down some water. A nurse came in and swiftly plucked the tube out.. a sensation that I was TOTALLY unprepared for and wished to never feel again thanks to the lovely amount of bile that came up with it.

Here’s something to keep in mind as you continue to read, the day that I experienced my first little bout of leukoencephalopathy via intrathecal methotrexate, was the day that I received yet another infusion of, ding ding ding! Intrathecal methotrexate! There was no way for us to know it, but leaving the hospital that day was a HUGE mistake. We were sent home by the hospital and told by the doctors that everything seemed fine and if something were to happen we should call. Looking back on it, I’m grateful that I got to suffer through the next few days at home instead of in, as I like to call it, Monkey Jail. I’m sure that anyone who has spent time in the hospital can understand that.

I arrived home feeling like crap and figured I just needed to rest and sleep off what remained of the reaction, besides, I pretty much always felt some sort of under-the-weather. I choked down my cough syrup gel caps, little red pills I took to calling, “dragon eggs,” and went to sleep. The next morning I didn’t feel much better, I might even have been a little worse. And we found out that I definitely was worse when we got a call from the hospital. The doctor who sent us home misread my blood counts and I needed to go back to clinic to get a blood transfusion, immediately. (This is funny because anyone who looked at my labs would have had to read them wrong in order for me to be discharged and sent home. It’s even funnier because my mom always requests a copy of my lab sheets to keep for her records and for some reason on this day she didn’t get one.)

Mom and I headed back up there, an hour each way, to get the blood. Needless to say we were cranky about the whole situation. I tried to tell the Nurse Practitioner who saw me while I was getting my transfusion that I felt more ill than normal but she thought it was just because of the blood and since I didn’t have a fever, sent me back home. Generally, a blood transfusion can solve so many of a cancer patients immediate problems. If you’re dizzy, winded, tired, you’re heart beats fast or you’re pale, blood can give you a nice boost of color and energy, it almost makes you feel like a normal person again. For these reasons, it was logical to assume that getting blood would make me feel better and I would be fine to go home. I wasn’t fine. I remember getting in to the car after leaving clinic and feeling so crappy that I told mom not to start the car yet. I waited until I felt a little bit better and then allowed her to start driving us home.

The next few days were.. miserable. The blood did not help at all. It is hard for me to remember a lot of what happened, I think that’s because I was mostly sleeping and resting, but there are a few things that I can share. I couldn’t stand to have the television on, the only thing I would allow was my mother to read to me before I went to sleep. I never left my bed and in my bed I hardly moved. I barely ate anything. One morning I woke up early and felt okay, so I started a movie on Hulu and actually requested food. A few bites in I began to feel yucky again. I shoved away the plate and turned off the movie. Later, mom tried to get me to go on a walk around the block. I refused and she pushed, thinking it would do me some good. I finally gave in but only got to the mailbox, a few feet from our house, before I felt so exhausted that I had to turn back. That was shocking to me. I’d had my fair share of days on end spent in bed and not eating, but I’d always been at least able to make it to the end of our street, even if I couldn’t go all the way around the block.

The worst thing, the hardest thing for me to relive, was when I was coerced into bathing. I couldn’t be up long enough to shower so my mom drew me a bath. She had to sit by the tub with me and help me get in and out. I wouldn’t say that it was embarrassing, but I would never have thought that as a twenty year old woman, my mother would have to give me a bath. It made me sad, for myself, the fact that this was what I had been reduced to in a few short weeks, after being so independent my whole life. It makes me sad now, to remember the times when I made my mom stay in the hall while I left the bathroom door open just in case I needed her help, because I couldn’t trust myself to take care of me. Cancer has a way of chiseling away at your independence, at your right to your own body, your own life. This is the mental tug-of-war with cancer, a mind game that I am still playing even today.

~to be continued~

Keep checking back for Part 3, that’s where things start to get really, well, shitty.

Thanks for the love everyone

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.

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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

Quick Update Video

Hi Everyone!

It would be awesome if you could all take a few minutes to watch this update video I did today. Just wanted to fill everyone in on what’s been going on. Also I would love to answer ANY questions anyone has about anything.

Hope you are all having a fantastic weekend! Go Hawks!

xoxo Katherine

What 2013 Gave Me

I never would have described myself as a glass-half-full sort of person before this year. Not because I was a negative, glass-half-empty sort of person before but because I have never experienced something so unique or scary or enlightening or profound as I have in 2013. Something happened to me that I had no control over at all. There was nothing I could do to stop it or change it. The only thing I could choose was how I was going to live with it. And LIVE WITH IT is EXACTLY what I did. I crashed head-on into a lemon tree this year, but I’ve figured out how to make some damn good lemonade.

Here is my 2013, the bad, the good and the really, really, really good.

  • I got a tattoo on my leg.

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  • I graduated from FIDM, and made some really bad ass shit.

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  • I went to Disneyland with my sisters.
  • IMG_1955I got diagnosed with Acute Lymphoblastic Leukemia and had to move back to Washington.

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  • I fell madly in love.

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  • I rocked a bald head.

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  • I got a new car.

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  • I experienced what it’s like to be trapped in your own body and have no control over your movements and actions or the ability to speak or function normally and had this tube shoved down my nose via leukoencephalopathy, fuck you very much methotrexate.

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  • I redecorated my bedroom and got a badass TV.

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  • I spoke at two cancer benefit events

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  • I bonded with my family

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  • I went to some dark places. (but I only threw up once)

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  • I missed my best friends.

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  • I went to my first Seahawks game, sat in the Red Zone at met Russell Wilson!

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  • And I gained a new sense of community. I experienced the kindness and compassion of family, friends, acquaintances and strangers. I learned more than I ever could have expected.

Getting cancer is horrible, but getting through it is amazing. I don’t know if other people can see it the way that I do, but in the end, I gained so much more than I lost this year, and a lot of it wouldn’t have happened without Leukemia. Life happens, whether you want it to or not and sometimes you just have to roll with the punches, and enjoy what you can with the people you love. Thank you to everyone who has reached out to me, supported me, prayed for me, thought of me, donated blood, donated money, done anything for me or my family or cancer research. I may not have responded at times, but I have appreciated everything that has been done for me so greatly and I hope that everyone who has tried to support me knows that.

2013, I’m not sad to see you go, but you were good to me. Overall, you were good to me.

xoxo,

Kathy