It’s June?! When the… What the…. Is it June in your reality too? It just can’t be, can it? Well, I will spend the rest of the week digesting this nonsense, let’s get you updated! I am going to be quick, but please ask questions! I know a lot of people steer clear of reaching out for fear that I am too busy to respond. While we are super busy, a lot of that is drive time or recovery so I have plenty of time to talk to my friends! It also brightens my day more than you know, so please reach out!
March. My last round of Keytruda was on the 22nd. I started seeing stomach problems that were quickly attributed to Keytruda. My hip pain had become incredibly bothersome. I was told that was also due to the Keytruda as it picks an “-itis” to flare up, it was assumed that the immunotherapy gave me arthritis. That all started at the end of January probably. I was taking Tylenol and my doc suggested I switch to Motrin. I was taking the max dosage recommended and it was not touching the pain. My infusions were put on hold until we could get the belly issues resolved.
April. My stomach became a bigger problem. Diarrhea, nausea, loss of appetite, and inability to keep anything down. Sounds like enteritis, inflammation of the intestine, also coincidentally the number one side effect of Keytruda. The culprit was not hard to find, so my doc sent me a script for steroids to speed up healing while we waited on referrals to someone that could examine the problems. My mom made a flying trip to help me with the boys a few days after Nate went into the field. I was a pretty pathetic excuse of a mama when I called her. It was all that I could muster to get the boys fed, cleaned up, and basic needs met throughout the day. The morning after she came up, Nate was in close contact with my nurse in Omaha. After a rundown of symptoms, she sent me to the ER. Luckily it was a complete waste of time, and as the discharge nurse was going through things to look out for and return to them should I experience certain things I asked, “if this is exactly why I am here and you can’t find anything wrong, why would I come back?” She shrugged in an all-too-knowing way and apologized explaining that sometimes it’s just the luck of the draw when it comes to what doctor is available there. Real nice, Trinity Health in Minot, ND. Even your staff is helpless in knowing how worthless of establishment you run. After many calls and orchestrating, I was able to be seen in Fargo for a GI consult to get an upper endoscopy and colonoscopy set up. The week of a historical spring snow storm that brought 40 inches of snow in less than two days. Nate was not allowed to leave the local area, so my mom and I took off as soon as we could. We drove through about an hour and a half of the storm, but made it. Where it barely dusted the ground with snow one of the three days we were there.
During the scopes we found inflammation, an ulcer, and a hernia. After a few days of not keeping anything in my stomach, I asked the GI doc if I could stop the steroids. The nausea and vomiting ceased immediately. He also suggested switching to Tylenol for my hip as the Motrin was … wait for it…. Causing inflammation in my stomach! Who knew? Oh… everyone!
May. I had a CT scan before seeing my oncologist. Going back to early March, my scans showed tiny growth in the nodes in my neck and pelvis. It was very small and my doc paid little to no attention to it. Treatment proceeded because it was marginal. Before my appointment with them, I spoke to a few residents and explained that I felt as though I had blood clots in my arms and legs. Apparently, that is not something healthcare professionals are used to patients pointing out on their own as each person I spoke about it with after asked how on earth they found them. Ultrasounds were ordered and clots confirmed later in the day. They listened to my concerns and everything with open ears and took every word in. Which was lovely. Doc came in and asked what I knew of my scopes. I explained the ulcer and hernia to which he cut off to exclaim I have enteritis and I absolutely needed to stay on my steroids. He cannot progress with any treatment until it is healed, the Keytruda caused it and I needed to “get healthy” before he could help me with anything. Oh, also everything grew more including two spots that had been so small we hadn’t spoke about since before I started chemo. Also, the Keytruda isn’t working, its off the table. (As you may be able to tell, I was not impressed with this interaction.) I explained I was going to die if I kept up the steroids because I could not eat anything while I was taking them, and if for some miraculous reason I could eat, I would promptly throw it back up. I lost thirty pounds in a month and I had permission to stop taking them. He was not entirely receptive to anything I had to say, but made an appointment with a GI doctor that specializes in immunotherapy side effects for the next day so they could explain what I needed to learn so I could “get healthy.” The GI doc was awesome and explained that I indeed had inflammation. From. The. Motrin. Definitely not the Keytruda. Are we all seeing red now? Just me? That’s alright, would you like to see red? Back pedal a bit, my wonderful nurse, Leah, was listening to how my hip pain felt and what I was doing, what was and wasn’t working and as she was explaining tramadol to me and that she would order the script for me, Dr. Retired Military cut in and told me I was going to take Motrin instead. Now we joke a lot about military doctors prescribing Motrin for everything from headaches to an amputated limb to cancer. Well, it lost it's comedic appeal when I was literally prescribed Motrin for cancer side effects.
That was my last encounter with Dr. Retired Military. They took my case to the tumor board to see what I should do next. I am now with a new GYN Oncologist at Nebraska Med and have had tests done, been approved for, and will start a clinical trial next week. To oversimplify the study, they will be taking my white blood cells and sending them to a lab to modify them to hunt down and take out the specific strain of HPV16 that I have. This will be my own personalized drug that they will administer every three weeks, duration depending on how much they are able to make of it. Nate and I took a trip to Houston last week to meet with a team at MD Anderson to see where they weigh in on this treatment plan. They gave us a ton of information on about five or six options. It was unanimous that if I am eligible for a clinical trial that I should jump on it. Not many people, less than 30%, meet the criteria. The other chemo options will always be there if the trial ends up not helping. Including the cocktail that I was taking last fall that was working wonderfully. I had actually tried a few times to see if we could tweak dosage or duration to get back on it and was shot down for whatever reason, so effectively that I forgot that I have a say in my own medical treatment.
We left Texas confident in the trial and my ability to call my own shots, though I feel very heard and as though my opinions matter with my new oncologist. We also left with big smiles to get the hell out of that heat and ridiculous population. Houston is freaking huge, and I really have no desire to go back. My husband who would step out of the shower to start sweating immediately agrees wholeheartedly.
We are currently on our way to SD from Omaha now. I had a CT, Echocardiogram, ECG, and labs scheduled yesterday to have all the ducks rowed up for the trial. While down there my labs showed that my hemoglobin was very low, so my nurse lined up an afternoon blood transfusion. We are hoping that explains why I have been so blasted tired lately. I have only been able to do a few hours of fun (or anything really) max before needing to lie down. Or if we go out fishing, the next day has been incredibly slow for this girl. I am grateful for the boost the two units of blood should provide right before this weekend of getting my little sister married! It’s been a long time in the making, so I hope we can make her day an absolute dream for her! Next week we are back to Omaha for more collection. Wednesday they will be grabbing a biopsy out of my neck and giving me a little catheter for Thursday when I will have my white blood cells filtered out. I honestly don’t know how that process works, I relate it to donating platelets to make it make sense, but that could very well be off. Eight to fourteen days later I will have my very own tumor fighting army that should give very little side effects. Hopefully as they pass through my spleen, my body makes note of the change and begins making white blood cells with the new artillery on its own.
I believe we are all caught up! Oh, we are moving to South Dakota! We do not have an official date yet, but nearly everything is lined up and we should be coming south sooner than later. We are long overdue for being closer to family. Leaving North Dakota is a decision we have both been avoiding because we have fallen in love with our community and lives there. It has been very difficult, but we belong south right now.
Until Next Time!
XOJO
コメント