Tag: Thymic Cancer

20220329 Non-Cancer Related Update

20220329 / Kelly

Happy March 29th! Whatever that means? This is my first non-cancer related post, I think. I would have to go back through all of my posts to be sure, but it doesn’t really matter, I guess.

About five years ago, I started keeping a journal. At first, it was nothing specific, I just felt a pull to start writing and keeping a journal of random thoughts, favorite quotes, feelings, etc. Once I found out I was going to be in a clinical trial, it seemed like a perfect way to track my progress. So, now I have two separate journals. Next, it was exercise. Coach Williams used to make us keep a weight training journal for football, so I started a similar journal to see what worked now, because what worked at 16 – 18 years old doesn’t work at 40 and beyond, at least for me and my health issues. My problem is I have this urge to keep things simple. I tried to consolidate my journals into one, do-it-all journal, which doesn’t work for the way I think, so I went back to keeping multiple journals.

Currently I keep four journals. My main journal is a medium Moleskine, square ruled notebook. I love the quality of the Moleskine brand and the square ruled has allowed me to draw technical or engineering type sketches if needed. The next journal is a pocket Moleskine, square ruled notebook that I keep on me almost all of the time. I keep this journal for anything from writing ideas, blog post ideas, grocery lists, or anything I need to write down now, before I forget. This may be the most important journal I keep. I keep another medium Moleskine, square ruled, notebook for cycling, weight training, yoga, health data, and nutritional data. This journal is new; I just haven’t logged my training on paper in quite a while, but I just love the feel of pen and paper and the accessability it provides. The last journal (for now) is a large binder, resembling a Trapper Keeper. I started this journal for a writing project I am workng on. I like this notebook because I can insert dividers to seperate chapters, ideas, research, sketches, etc. This is what works for me right now. It may change again because, like Will Smith, I am a work in progress ;). My main problem now is finishing a complete journal. I have a small stack of journals with blank pages. Some are from jobs that I left, or sometimes I feel like I just need a new start. I wonder if I am alone, or are there others out there like me, that can’t seem to finish a journal. It used to stress me out that there are blank pages that have been abandoned and left to be forgotten. Eventually I came to the conclusion that they are my journals and I can do whatever I want with them. I am the author of this story, which is my life.

So what about you? Do you keep a journal or two, or four? I would love to hear how you journal, and please tell me I am not alone in leaving unfinished journals. If you don’t journal, I recommend giving it a try. You might find out it helps relieve some of the stress of life, and you might find out you enjoy writing as much as I do.

Until next time; Just Keep Moving. #JUKEMO

20210127 Cancer Treatment Update:

20210201 / Kelly

Hello, and welcome. I don’t think I have ever started a post this way, but today, I am filled with new hope and a great deal of faith. In my last post, I was hurt, angered and to be honest, confused. I was confused at the lack of urgency in the face of metastatic cancer. I will not reflect on this again. It was a lesson learned that you must remain vigilant and knowledgeable in your own affliction…because nobody cares about your health more than you. I had become complacent because I was feeling good. It happens to us all. We just want to live and be happy in life. My friend Mart Ruusma suffers from cancer also, and he too had become complacent. His reply on my last post reminded me that I don’t need to beat myself up over it. It happens. Accept it, learn from it, and yes, Just Keep Moving.

So on to my latest appointment. Sonja and I were both very pleased and excited about meeting with Dr. Jose Pecheco at CU Cancer Center at Anschutz. This place reminds me a lot of IU Simon Cancer Center. They are both learning hospitals, they are both efficient in their appointments, and they are both research heavy. We like it here and we liked the blunt honesty and the well thought out plan of attack from where we are now. So on the 27th of January, I started a new chemotherapy treatment, that will also include an immunotherapy treatment. I think Sonja and I both were pretty happy about where we are now!

So this is the section of the update that might be boring if it isn’t happening to you. But this is where the fight happens. This would be the trenches, I guess. It is amazing how similar CU is to IU. I know it is easy to glance at the name and know it is a University and therefore a teaching hospital, but it is more than that. It is the professionalism, the efficiency in how they schedule appointments and take care of business. I felt at home in a way that is comforting, but at the same time knowing I am here to pump a cocktail of poison into my body with the hope that it slows the progression of the disease. And I am good with that for now. I have been asked why I don’t want to get rid of all of the tumors. I do, oh man, I wish it would take it all, but I have to be realistic about my treatments. There is no cure. At least right now. So I work with what I have, and that is my attitude towards the disease. My state of mind in how we approach this treatment. Fighting cancer is a team effort. These incredibly smart and talented staff of doctors and nurses do their thing, and I just have to show up. But showing up doesn’t mean just physically being there. Showing up means you are in the moment both physically and mentally. It means you are asking the right questions, you are doing what the doctors and nurses are asking you to do, and you are there in every possible way.

Once I get to the Oncology floor and they get me a room, I get into a recliner and Sonja has a nice comfortable chair. If you have never seen one of these rooms, you can get an idea of what they look like by watching a movie like 50/50 (one of my favorites). The nurse, accesses my power port (see attached pic of what the port is and how it is routed to your heart:

Once I am accessed, it is showtime. The first thing the nurse does is give me a combination of drugs which are, Dexamethasone in combination with just normal saline and Aloxi, to curb the effects of nausea and vomiting. I get a slow drip (10 mg) of the Dexamethasone and it has worked very well. I have been nauseas, but no vomiting. I’ll take it. I have told Sonja many times, I think the nausea and vomiting is almost worse than the pain…almost.

The next thing the nurse gave me was another anti nausea drug called Emend in which I received 150 mg, also a slow drip through the powerport. I then moved on to the Carboplatin. This is the actual chemotherapy drug that kills the bad cancer cells…and also the good cells with it. I received 10 mg/mL through the powerport. I finished the day’s treatment with another chemotherapy drug called Etoposide. This is another cell killer. The last two drugs have the typical side effects that most of us have heard of; hair loss, white and red blood cell loss, weight loss, nausea, diarrhea, vomiting, pain and sores in the mouth, loss of taste, etc. Fun stuff, but necessary to stop the abnormal cell growth and most importantly…buy me some time until the clinical trials can open back up. I did almost the same treatment for the next two days, but only taking the Dexamethasone, Carboplatin, and Etoposide. That is it for now. I will go back in three weeks and repeat the process.

I hope I didn’t lose most of you with boredom, but I feel like it is necessary to detail the treatment as I have received it. I am also open to feedback from everyone, and anyone in the medical community, if I have gotten something wrong, please let me know. This is the way I remember the treatment. I expect the next couple of days to be interesting in regard to the side effects. Some people say it gets worse in the few days after treatment, but we will see.

I am also ready to begin posting my cycling workouts, weight training, nutrition, and so on. I am not sure how I will post this information yet, but there are quite a few ways to do this. I will more than likely, post a link to my Strava, MyFitnessPal, Zwift, the different sites are almost endless anymore. I don’t know if anyone reading followed John Stone Fitness, but that is the perfect model of how a site should run. As of right now, the ride in France is still on, but has been pushed back to September to give time for the pandemic to fade out…again.

Thanks again for reading my posts as I document this journey. Everyone’s support is very much appreciated and needed. It is amazing how unloading all of the feelings, fear, anxiety, and even laughter and love in the face of a disease like cancer can seem so therapeutic. I cherish you all. Until the next post, Just Keep Moving!

20201016 Cancer Treatment Update:

20201017 / Kelly

20201016 Cancer Treatment Update:

em·pa·thy, /ˈempəTHē/, noun:

defn.; The ability to understand and share the feelings of another.

As I sit here in Swedish Medical Center, dealing with another episode of severe pain and irretractable vomiting, this is the word that popped into my mind. To me, this is the characteristic required to become a nurse. And not all nurses possess this characteristic, but the truly selfless, caring, and effective nurses do. Just like any profession, there are good and bad nurses, and the full gamut in between. For the most part, all of my nurses and doctors have been phenomenal. This goes for all of my doctors and nurses at IU Simon & IU Med., as well as here in Colorado at Swedish Medical, Rocky Mountain Cancer, and Sarah Canon Research. But occasionally, I have had nurses that are either in it for the wrong reasons, are having a bad day, posess zero empathy, or seemingly just don’t care. On one occasion, I actually had a nurse that couldn’t put a full sentence together. She wasn’t following any protocol, such as wiping down the IV line when administering meds. I am certain she was either diverting the Dilaudid, or taking something before she came to work. I was so happy that Sonja was there to witness what was happening. I don’t mention the negative experiences I have had to complain or make anyone think this is the rule rather than the exception. I just want to remind people; if you ever find yourself in the role of patient, be aware of your own healthcare, be your own advocate or better yet, have someone in your support system there with you as much as possible. We are all human and even the best of us make mistakes and overlook things. And when you have a nurse that is great at their job, clearly cares about their patients, is empathetic and compassionate, thank them. Let the charge nurse or director know how great they are, went the extra mile, or took the time to understand your suffering. Chances are they already know exactly, how good they are, but everyone likes to be appreciated and recognized, and noone deserves this more than our nurses! On that note, I want to recognize Sonja Nickels, Brandy Dale, Pey Vaziri, Taylor Fink, and my Clinical Trial Nurse at IU Simon Cancer Center, Anne Younger. As most of you know, Sonja is my world! She is to me, what any nurse should model themselves after. She is smart, caring, empathetic, compassionate, professional, and has a heart of gold. And I am thankful every day that she chose me!

So I guess I can actually get to the Cancer Treatment Update now. I went back to my Oncologist on Tuesday, 10.13.20 for labs and general check-up to monitor the effects of the new chemo regime. Bloodwork looked good. The red blood cell count was in the normal range, which was somewhat surprising considering chemo typically lowers the rbc. This is crucial to my cycling performance and ability to climb mountains. The more red blood cells, the more oxygen that gets delivered to my lungs and muscles. This is why cyclists (among other sports) “blood dope”. They will dose with Erythropoeitin (EPO) which boosts the rbc, extract their own blood, then transfuse the rbc rich blood back into their bodies at a later time, typically in the mountains. I plan to discuss issues like this as I learn more about how my body tolerates and adapts to the training stress in unison with the chemotherapy. But for now, I need to sleep. So, until next time…Just Keep Moving!