My friend after reading my blog told me that it’s sad. Though it has had some sad moments. I’ve had some really happy ones too. I want to take the time to share them with you.
When in Kansas City, I got to do a lot of neat stuff that I wouldn’t have done otherwise. I took Paul to the planetarium there and he had never been before but he loves science and space. I went to the Kansas City Zoo with my mom and I got to feed some cute little birdies and they climbed all over you and drank nectar out of your hands. I reconnected in my aunt that I haven’t seen in probably more than 10 to 15 years ago. I even got the opportunity to drive to Metropolis, IL (the land of superman) to go visit with her! I went to my first fish fry at Paul’s mom’s house in Nebraska and had fried catfish for the first time and it was so delicious! My best friend Chastity and her daughter came to visit me towards the end of summer and we got to explore Science City at Union Station and that was really awesome! I was even able to make a trip to New Jersey for a week and catch up with a lot of people I haven’t seen in the last couple years. I’m sure there’s many things I did, that for the life of me I just can’t remember anymore.
Of course I wish I didn’t have cancer, but the time away from working allowed me to do a lot of things that I wouldn’t have normally been able to do.
Back to my story. Once I was freed from my apartment in Kansas City I went home. I would see the doctor twice a month. They had finally removed my port because I was no longer using it. You don’t even understand how wonderful it is to take a shower without having to constantly worry about covering it up and making sure water doesn’t get into it.
The month of December I was starting to get ready to go back to work. I believe I was even scheduled to work the week of Christmas. During one of my doctors visits I started explaining to them about the pain I’ve been experiencing in my joints. That’s when the doctors noticed that I had developed Chronic Graft vs Host Disease in my joints. Basically my moms cells were attacking mine and my joints is where they decided the war zone was going to be. They upped my steroid dosage which lowered my immune system and going back to work was off the table indefinitely. They are trying to lower me off the steroids with no luck, the joint pain seems to still keep coming back. Such is my plight in life but at this point I see a Palliative Care Doctor (a doctor for someone with serious illnesses to help with symptom management) and they’re able to manage my pain fairly well. BUT that is jumping ahead. Back to the story.
I started to notice that where the point had been, a bump was developing. I brought a friend with me to my doctors appointments on December 31st and figured afterwards we would just enjoy the city! Of course, my doctors had a different plan for me. You never quite know what you’re getting into when you go to the doctors. Such is life as a cancer patient. I brought to their attention the lump that was developing on my chest. They sent me that day to get an ultrasound. The ultrasound showed that it was just a fluid pocket in my chest. Possibly something developed from it’s removal but at this point, it had been removed for months.
The next week Paul and I went into KU Medical Center to have this fluid pocket drained. Three attempts and it was giving me nothing, so he decided that it wasn’t going to drain and maybe it would just resolve itself.
Instead of resolving itself, I noticed it was growing. I brought this to my doctors attention again and again they sent me off for an ultrasound. The ultrasound tech said she’s never seen anything like it. She showed the radiologist and again he said it’s just a fluid pocket, it’ll need to be drained.
So a few days later we go back in and they attempt to drain it. No luck again. This doctor decides to biopsy the cells around the lump.
A week later I get an unexpected call from the Cancer Center. The lady on the phone says “the biopsy tested positive…..positive for cancer. you need to come up here immediately.” So the next day we are back on our way to the Cancer Center. They did a PET scan which further confirmed that this tumor that had been growing was in fact cancer. Luckily, not a new cancer but something related to my Leukemia. I had what was called a Myeloid Sarcoma. Basically it’s a tumor related to my leukemia where white blood cells seem to gather at, thus making it grow and being undrainable. The next step was to start radiation on that specific spot. They did make sure to do a bone marrow biopsy which did show that the cancer was not back in my bones, but I certainly needed to get this sarcoma taken care of quickly.
I met with the radiation oncologist in Kansas City but ultimately I decided to do the radiation at home in Joplin. I went through just a few session and got very sick. Fever, puking, the whole shebang. I went to Freeman Hospital emergency room and they decided to transfer me up to KU because they were certainly the experts in this area and the experts on me personally. I had gotten Cellulitis from how quickly the cells were dying from the radiation. Cellulitis is a bacterial skin infection so I was put on every Anti medication in the book and hoped for the best. With a few days worth of antibiotics I was finally able to go home and continue my radiation treatment.
The radiation had not worked as quickly as they had hoped and they decided to add on three more sessions of a high dose which severely burned up my skin. The extra doses did in fact work and my tumor was gone….But that wasn’t the end of my cancer adventure yet. I finished the radiation and they decided to go for one more bone marrow biopsy because my tumor could easily slip back into my bones.
Of course, with my luck, it certainly did make it’s way back into my bones and extremely fast. I talked to a doctor on the phone who told me we would just do 10 days of this light chemo and I could go it at home. On April 18th when Paul, my mom, and I made our way to the doctors they had changed their mind. I was going to be admitted to the hospital and they were going to go another round of high dose chemotherapy in hopes that this would take away my cancer for good.
While I spent my month in the hospital, my mom stayed nearby in a place called the Hope Lodge. They house cancer patients and their caregivers. Paul stayed with me for the first few days and then he went home and would come back to see me on the weekends. The chemo I was doing this round was called MEC (Mitoxantrone, etoposide and intermediate-dose Ara-C). This was supposed to be a hardest of the chemos I’ve received but I took to it pretty well. I didn’t feel great but I never really got as sick as I had for my first two rounds of chemo back in the beginning.
I was there for a month. I finally got to go home on May 9th. Best birthday present I could have received. We did another biopsy and once again, I was in remission. The doctors said it was important to continue doing chemo to keep the cancer at bay. Eventually I started doing a maintenance chemotherapy called Dacogen that I was able to do at home here in Joplin. It was 10 days, weekends off and they told me this would be easy compared to what I’ve done in the past. I did my 10 days with no huge problems. I only needed two blood transfusions during the process. No big deal.
Except in the middle of the night a few weeks later I had a fever. Paul took me to the ER once again, and they discovered I was extremely low on blood and that they didn’t have the kind I needed on stock. They took care of the pain I was in and transferred me up to KU again so I could get the proper care I needed.
At KU I did a few transfusions a day to get my blood counts where it needed to be. They said I had a neutropenic fever which was basically because my white blood counts were so low. My white blood cells were completely wiped out and I wasn’t able to exist in the outside world at the moment. We spent a week in the hospital and then they gave us the option of going to the Hope Lodge and coming in to the doctors every few days, which I gladly accepted. Paul hadn’t had a shower in a week, nor a comfortable place to sleep. He had been sleeping on this couch they had in my room that extended a bit to make a bed but it certainly wasn’t as comfortable as a real bed.
We spent 2 more weeks at the Hope Lodge. I wasn’t needing anymore transfusions but my white blood cells were not coming up as quick as we hoped. Finally I hit an absolute neurophil count of 450 and the doctors decided it was time they could finally send me home!
That was just a few weeks ago. I did a biopsy about two weeks ago that came back negative for any residual cancer. Tomorrow I have a doctors appointment to plan out what my next steps are. I’m waiting for a test to come back called a Chimerism. It shows the amount of bone marrow that’s grown back that is either mine or my donors. I want to be at 100 percent donor because my body has lost the ability to fight off cancer. The only way it will stay away is if I stay at 100 percent donor and have those cells fight for me. I was given a few different options to kind of ponder over before my appointment tomorrow. They might try a new experimental drug that my doctor says will harness my donors immune system but it can cause additional issues with graft vs host disease (maybe some intestinal issues, maybe an unexplained cough, maybe my joint pain will just get worse), they might opt to do another round or two of Dacogen (just to be safe), or they might just leave me alone for a bit and watch me.
I’m kinda hoping for the last bit but you’ll have to wait and see what my blog post tomorrow says!
Well this is my cancer story so far. Hopefully I’ve covered everything and made everything understandable for anyone reading without a medical background because god knows I knew nothing until I found out I had the big C.