Trials and Treatments

Monday nights are always restless. I toss and turn with anxiety about treatment the next day and there is little to no sleep. But I typically work myself up over nothing. Treatments for the most part run pretty smooth and I’m home in time to eat dinner with my family and tuck Raylan into bed after sneaking in a few snuggles. I’ve struggled with identifying why the anxiety exists on Monday nights if treatments have continued to be not so terrible. But the reality of the situation is, we are pumping poison into my body and at any given moment the plan can stray off course. So it’s safe to say that this past Mondays restless night was validated when the next day took so many twists and turns causing me to be at the hospital, not for 4 hours but for 72 hours.  

(Anyone else notice my trademark of run on sentences?! ) 

Everyone in Kentucky knows of the Ohio Valley Crud. Around the beginning of November people start hacking up a lung and slinging snot everywhere. And it’s nearly impossible to decipher who has the flu, allergies or just flat out suffering from the plague. I’ve taken pretty good precautions knowing that my immune system has been compromised. But that didnt stop my body from picking up one of the three options listed above. My personal opinion by the way I felt and the annoyance of the lingering cough that kept my entire household awake at night... I’m going to jump to the conclusion that I had the plague. Dramatic much? But this cough could have been a blessing because it leads us to a really big decision. 

So let’s just dive in. Lots has happened since my last update so let me just give you a super amped up version of the last couple of weeks. 

My oncologist who informed us of his expected departure from the hospital this coming February is playing Elvis and has left the building much sooner than expected.  Placing my care into the hands of a man I’ve never met. Highly recommended, but still a stranger. I discovered this when my port flipped upside down and I had to return to the hospital to get it reversed  before treatment the following day. However prior to Dr. Jain leaving he had measured my tumors and they have shrunk in density almost 50% already!! If that was his farewell present to me, I’ll take it! But he sure will be missed. 

During all of this chaos I continued to have the lingering cough that no cough syrup or decongestant was touching.  This amazing lady right here stepped in and voiced her concern, getting me into see my new doctor before this weeks treatment began. Let me introduce you all to Joey. She is... was (we will get there) my research nurse. Remember that trial study that I was partaking in? The Immunotherapy that was going to teach my body to fight off cancer cells in the future... Joey is in charge of everything to do with me and that trial. She also happens to be one of my biggest advocates in the hospital scene and knows how to get stuff done. Any concerns small or large, even if it’s just getting me a pickle from Jimmy Johns, Joey is on top of it. Because the trial drug , should I have been receiving it and not the placebo, has known side effects of lung and heart problems, her concern was that my cough may have been turning into more than just the Ohio Valley Crud. Mix that with the huffing and puffing and blowing houses down that I’ve been doing since treatment one, and it was apparent that something more than just the plague had set in. At that point the doctor felt that I had developed a reactive airway and could be fixed with an inhailer. My lungs sounded great and he was comfortable with staying on track and receiving my treatment that day. Yay!! I love it when a plan comes together! We were on track and ready to start treatment day. 

Whoops. Spoke too soon. 

Bless my sweet Nurse Amy for putting up with me on days like this. You know you click with someone when they can read your face and immediately know to say “don’t freak out”. I cannot stress enough how important it is to have a team of people with you during these days that you love and trust. God put Amy and Joey in my life for a reason.  

Before every treatment begins my blood is tested for several different things, to ensure that my body is healthy enough to handle the chemotherapy. Because the chemotherapy drug is unable to identify good cells and bad cells, the medication attacks all of the cells in my body. Which explains why I’m bald and my nails are turning yellow. Yuck. ( But can someone explain to me why I still have to shave my legs every day? That seems very unfair. ) So to be safe, there are certain standards that my body has to meet in order to be able to handle it. While I was awaiting those results, some extra tests were ordered to check my oxygen levels. 

We took a field trip with a lap around the nurses station and by the time we were back in my room my oxygen had dropped a significant amount. Resulting in placing me on an oxygen tank. All 29 seconds of it, because it was awful. But even with the super speedy time frame that I had that little tube up my nose, my oxygen stats jumped right back up to 100%. So I sat for a few minutes and I was back up and walking. I’ve never been a test taker but on this day, I was legitimately failing every test. The next lap around didn’t end in my room but instead an empty room half way down the hall because my oxygen dropped back down to 69%. With oxygen levels that low Amy didn’t even feel comfortable enough to continue back to my room.  A cat scan was ordered to look at my lungs and it was decided that treatment wasn’t going to be an option that day. Come to find out, those tests we were waiting on from my blood work would have put a stop to treatment this week anyways. Like I said, I was failing all of the tests. My ANC count has to be at least 1000 to receive treatment, it was 770.  A big fat F for that test. 

From the cat scan I was taken to the emergency room where I had more tests. It was like I was in college pulling an all nighter except I didn’t get to study at all! Here is where it gets tricky because all of a sudden I was an A+ student and passing everyone of them!! An EKG, Arterial Blood Gas, which b.t dubb, was by far the most painful thing I’ve had done to date. But my oxygen was still dropping at the slightest bit of activity. The doctors concluded that it could possibly be Pneumonitis {inflammation in the lining of my lungs} since there was little to no explanation to draw and kind of conclusions. They started me on IV steroids (be on the look out for my puffy face in our Christmas cards.) I was admitted to the hospital to keep an eye on my oxygen and to of course, run more tests.  I  started breathing treatments every two hours and continued the steroids. More tests included an echocardiogram, another cat scan, and an EKG bubble test. All coming back healthy. The breathing treatments and steroids allowed me to be able to walk a little without my oxygen bottoming out. This was wonderful and gave me free range to break out of my room! Never in my life have I cared less about being the most basic white girl in my sleep shorts and Ugg boots. Add that fancy face mask and I was one sharp looking cancer patient. As Joey would later say, all I was missing was my pumpkin spice latte!  Because my white blood count had dropped so much, I was at a greater risk of infection. I wasn’t even allowed to have ice or fountain drinks because of the risk of bacteria. But I needed out of my room.  Cafeteria here I come!

Exhausted, and overwhelmed I never had a calm minute to process what was going on. I was anxious that treatment was postponed but health wise, I felt the same way I had felt for weeks. So being admitted at that point in time became frustrating. I didnt feel any worse than treatment had already been making me feel. So why now? The frustration, anxiety and roid rage got to me a lot but I smiled my way through it to avoid losing my mind. With all that was happening around me , the hardest part was being away from my baby boy. Not only did I not kiss him good-bye that morning, because he was napping and I would be home in 4 hours, but it was also the longest I’ve ever been away from him. Luckily I was able to get to spend a little time with him. And it gave me the biggest push to keep fighting. Two nights later and several meetings with the doctors I received word that due to these issues arising it was no longer safe for me to remain on the the trial. This is where anxiety sets in all over again. I have had it drilled in my head that this study was important for my survival rate. And just like that, I can no longer continue with it. In the words of my doctor, he is confident that the chemotherapy regiment that I am on is doing what it is supposed to do and that I am having a great response to it. He can’t in good conscience cure my cancer and leave me with heart and lung problems that could kill me.  He was very certain that the issues that I had been having with my breathing was drug induced. And because it has been noted that the trial drug could cause such issues he didn’t feel like it was safe for me to continue. Seeing his confidence gave me more confidence that it was the right decision. Joey and my new doctor are working on getting my part of the study unblinded  to reveal if I was indeed receiving the drug. If it comes back that I wasn’t {let’s be real .. I had a reaction the very first time I took it. I was getting the drug.} But for the sake of not jumping to conclusions, if it comes back that I wasn’t receiving the drug then there is another issue to address with my chemotherapy. But all of that will be revealed over the next couple of weeks.  

For now; I am home. It’s still hard to even walk to the the kitchen without getting winded. However, while I am panting like a dog with his head out the car window, my oxygen is not dropping. Which means my body is working how it is supposed to! 

So in my sincere apology for this being the most boring update ever let me say that writing about medical updates is almost impossible to make entertaining. But it is all very important information to this journey I am on. So for now, I will continue the steroids at home and with my levels bouncing back up while I was still at the hospital, we are back on track to start treatments again, minus the Immunotherapy, on Tuesday! 

Thank you for all of the prayers and support and visitors and gifts and flowers (that I wasn’t allowed to see till I got home)! I have the most amazing supporters and it gets me through all of the hard times. Thank you for helping me keep a smile on my face. 

Here is one last picture of my normally round face before I blow up like a puffer fish. Bring on the steroids!!