Posted on June 22, 2017
Hi everyone! It’s Katie again. Time for another update…
Last time we left off with us heading to Johns Hopkins. That visit we learned more about my cancer, my treatment plan, and all of the possible side effects. Halfway through the laundry list of side effects, Stephen interrupted and said so basically it’s going to suck? Our doctor agreed and told us to prepare for my quality of life to suck for the next year. He estimates I will have one good week a month. We didn’t want to know any numbers or statistics regarding my survival and the doctor respected that. I asked him if people survive this type of cancer and he replied they do. He also told me he wouldn't put me through this if I couldn’t survive. Naturally, my next question was will I survive? He replied you will. And that was all we needed to know as far as prognosis goes! Now you are probably reading that thinking what an awesome appointment! Yet somehow, we left there feeling a little hopeless about how the upcoming year was going to go and about recurrence rates (which are very common with my cancer). A good friend reminded me we have to take this one day at a time… don’t let cancer rob you of your victories.
We decided to get a second opinion at Duke. We really liked the doctor at Duke as well and were very happy to find out the doctor agreed with the treatment plan. The doctor at Hopkins and at Duke are friends and were able to discuss my specific case. It’s always nice to have two experts in your corner, especially two that can work together! Both doctors also agreed that my cancer might not be Desmoplastic Small Cell Round Tumor (DSCRT), it could be Eweing’s Sarcoma. They are both working on additional tests to identify the cancer but because DSCRT is so rare it is taking more time than we had hoped. However, both of the two behave similarly and will be treated in somewhat the same manner. The DSCRT chemo regimen is slightly more complex than the Eweing’s. Originally the doctors said we would treat DSCRT but last minute decided to switch to Eweing’s until the additional tests confirm the final diagnosis. They can add more drugs in next round if they need to.
On Monday (6/19), we had an echocardiogram done on my heart to be sure it was strong enough for the chemotherapy drugs (it is!). Later that day we had a chemo education appointment, basically an appointment to educate us on all of the nasty side effects of chemo and preventative measures to take. The nurse that conducted the appointment kept telling me how complex/complicated my regimen was and that she hadn’t seen one this involved before, not sure if she was trying to make me feel better but it wasn’t working. She gave us some of our doctor’s notes from Hopkin’s that should have been for our Virginia Beach doctor’s eyes only… I was reading about the regimen later at home and came across my life expectancy. The one thing we had specifically asked not to see. I had a complete breakdown. I was on my hands and knees crying and screaming to God to save me. I know God hears those prayers. I know when I am at my weakest, He is at His strongest. My God is so much bigger than cancer. My God is so much bigger than statistics. My God will heal me!
On Tuesday (6/20), we had our first PET scan to get a baseline on the cancer. We needed to know if it had spread anymore or was in any other locations. The preliminary report shows the cancer in my liver and in some other places in my abdomen. We will know more when the final report comes in, but we are super thankful it hasn’t made its way out of my abdomen!! Otherwise, tuesday was pretty uneventful but I was still experiencing a lot of anxiety from Monday’s happenings so I was pretty nauseous and run down all day.
On Wednesday (6/21), we checked into the hospital for our first round of chemo, AKA our first battle. I still hadn’t eaten much and was still feeling pretty rundown, not the way you want to go into battle. I know God was looking out for me because they ended up not being able to put my port in and were able to give me some meds to relax and I was able to eat two big meals and get a good night's rest!
Today (6/22), my port was put in this morning. It was kind of a weird feeling to be awake for a procedure but it was relatively pain free. The operating room was great, classic rock was playing and all of the surgeons, nurses and support staff were having a good time, it really helped to ease my anxiety! The port will allow easy access for my chemo drugs to be administered, as well as fluids and blood draws. The port is under my skin on the upper right hand side of my chest and will stay there until I kick cancer’s sorry ass. Premeds were administered 30 minutes before chemo was scheduled to start. The chemo round today was relatively short (only about 30 minutes) but it sure does feel good to finally start fighting back! Tomorrow will be about about 90 minutes long with a different drug. Saturday I will start a 48 hour continuous chemo drug and then we should be able to check out and go home Monday. Most of the side effects will start to kick in once I get home, especially the lowering of my blood counts. Please don’t feel offended if I say no to visitors, I have to be quarantined during that time.
Again, thank you all for the continued prayers, thoughts, texts, phone calls, meals, visits, and donations. I am so grateful and still floored by all of the support! I love you all! I will try to update again soon, hopefully to say that I am feeling great!