A much delayed update…
I have been delinquent in keeping you updated on my health. Below is a poorly written, grammatically incorrect, inefficiently punctuated, and just a ramble of words that describe the past couple months. Thank you for reading. Thank you for bringing the Thunder!…….
I wish I could tell you that I have been kicking my feet up on a cooler full of cold beer on a warm tropical island somewhere in the Caribbean since the last time I posted an update. Man, that would be awesome. Unfortunately, that’s not the case. I have found more than ever in my life, there truly is no rest for the weary. Those Caribbean plans are going to have to be put on hold while we take care of some other business.
I finished radiation on November 1, and what a relief it was to be done with 25 days of getting radioactive lasers shot at my brain and spinal cord. It was the first time people told me I looked “rough” or that “treatment is really taking its toll on you.” Things a cancer patient never wants to hear. If how I felt on the inside shown through to the outside, then these people weren’t lying because I felt like crap on the inside.
It was time to recover. It was time get sleep and wake up knowing that I didn’t have to make the trek up to UNC today, or tomorrow, or the next day to another radiation treatment. It was time to shake off the “rough” look and take advantage of days when I could sleep whenever I felt like it, eat whatever my appetite would allow me to, and regain some of the Ben the treatment took away from me. Beyond rest and recovery, there was other business to take care of with cancer treatment…I had to address the cancer in my sinuses and lungs that we had been neglecting while I did radiation.
After a telephone pow-wow with Dr. Weiss I was back up to UNC for scans on sinuses and lungs. I was able to get an MRI on my sinuses, face, and neck on 11/9 and a CT scan on 11/11 of my chest and abdomen. From the MRI on 11/9 we got some good news that the cancer in my nasopharynx was still under control and pretty much non-existent. However, with the good comes the bad – the radiologist who read my scans noticed my right lung had developed a large pleural effusion, or a fluid build-up between the lung and the chest cavity wall. This would explain part of the reason I felt like shit. I was having a hard time walking up and down the stairs without getting winded; simple tasks like taking the dogs for a slow stroll around the block wore me out, or cooking dinner for the family had me huffing and puffing. In my head I thought it was all related to the recovery process from radiation. Instead, there was a bunch of fluid hanging out in my body causing me all kinds of issues. This was a mentally crushing feeling for me. An endurance cyclist who was able to ride hundreds of miles per week now can’t even walk up a flight of stairs without grasping for breath. It hurt me emotionally. It hurt me physically. I needed help to get this under control.
The decision was made to keep the appointment on 11/11 for the chest CT scans to confirm the pleural effusion (and look at the cancer we had been ignoring during radiation) and to get me into the hands of the pulmonary team to get the fluid drained. The CT scan did in fact confirm the PE, and Dr. Weiss worked his magic to get me a same day appointment to have the fluid drained. I had 1.3 liters of pleural fluid removed from my body! That would be the picture that goes along with this blog post. It was an instant relief from the pain that was haunting my breathing and the pressure and swelling I felt in my chest cavity. When I walked into the waiting room to meet Ann, she said she could see a physical difference in the swelling of my chest cavity. I had a new lease on life and a pep in my step. I hadn’t felt this great in quite a while. We celebrated with some humungous BLTs at Merritt’s Grill in Chapel Hill then hit the road home back to Wilmington.
The one thing with draining PEs is most times the pleural cavity refills within a couple days and it needs to be drained again. Guess I’m the lucky guy who this happens to. I had about 48 hours of relief before I started noticing the symptoms again – shortness of breath, labored breathing doing simple tasks, having a hard time walking up the stairs, etc. A call was made to the pulmonary team and a decision was made to bring me back to UNC and install a catheter into my right lung so I can drain the PE at home daily. Now I had to squeeze in a minor out patient “surgery” to get the catheter installed and start a new chemo regimen within the next 24 hours. Good thing Ann has a little bit of a lead foot and can get us from Wilmington to Chapel Hill in about 2 hours and 15 minutes, just don’t tell the State Troopers.
I was able to get the catheter placed on 11/17 and we spent the night in Chapel Hill so I could get my chemo on 11/18. I have been placed on a two-drug cocktail that is going attack the cancer in all parts of my body. Primarily we are focusing on the disease in my lungs, but this cocktail will be able to breach the blood-brain barrier and attack anything lingering in my brain and spinal cord. Speaking of which, I will not know the results of the radiation until the first week of January – radiation continues to work for months after the last laser; therefore Dr. Shen wants to wait before we do the MRIs.
Chemo complete, but wait! One of the side effects is explosive diarrhea during infusion of irinotecan. We were getting ready to leave to head down I40 to Wilmington and my stomach turned straight upside down. I yelled for my infusion nurse to get me disconnected from my chemo tower because it felt like Mr. Hanky the Christmas Poo and all of his friends were coming to the party RIGHT NOW! I sprinted the bathroom and prepared for the worst…luckily it was a false alarm. Upon returning to my chair, the nurse kindly gave me a super strong anti-diarrhea medicine. I made the decision to hang out awhile before heading home. Luckily there were no more emergencies and we hit the road.
Home for the holidays. What a relief. My parents were flying in for 10 days for Thanksgiving for the first time in forever, my brother was flying in on Thanksgiving Day, and my sister’s family was driving in on Thanksgiving Day. It was going to be the perfect Griswold holiday. I had about a week to get over the chemo side effects before my parents showed up. The new chemo had me on my ass. I had no energy and getting out of bed was not an option some days. When I was able to stand, I had the wobbles and it felt like my brain was floating in a bowl of soup. This was rough. This was something that I had never experienced before. Ann had to make sure I was not pushing myself, because I’m not the type to just sit around. Luckily for Ann she did not have to do much persuading because there was no way I was doing anything besides watching TV on the couch or bed.
I was able to get my act together by the time my parents arrived. It was great to have them here. They were able to help with the kids and Thanksgiving prep. As the week went on, I gained strength and was able to participate in the family fun. We cooked an amazing Thanksgiving meal and were able to celebrate the love and the gift of life that we get to enjoy every day.
Things were moving in the right direction: I was feeling better, Thanksgiving dinner was a success, no family fights, and the PE drain was pulling fluid off my lung every night…until it wasn’t. If something is going to go wrong, it is going to go wrong with me. My PE drain decided to stop working on Thanksgiving night. Great, I have an issue on a holiday. A call to the cancer center after-hours emergency line calmed the nerves and said it shouldn’t be that big of an issue until I can be seen at the beginning of the next week by the pulmonary team. This left me a little nervous that I had four days of no drainage, but I put my faith in my body holding me off from any trip to the emergency room the next four days.
My brother and dad escorted me up to Chapel Hill on Monday 11/29 for the pulmonary team to investigate why my catheter decided to stop working. Basically, I needed for it have some Drain-o poured in and loosen some blood clots up. Emergency diverted. But a long day of waiting and driving. We were all worn out. But it was great to spend some time with my brother and dad at the hospital. My brother, Adam, has been many times and has been an integral part of the family decision making tree in recent months. This was the first time my dad, Bill, had been able to come. It is kind of an eye-opening experience how much goes into getting care. I’m glad he was able to experience what us cancer patients have to go through to fight this nasty disease.
Up next was my next chemo infusion on 12/7. Luckily, we didn’t hit any more bumps in the road prior to this infusion. I was able to get all of my family out of the house and back on the way to their respective homes. Some much needed quiet time and recovery was gained and I was ready to take on round two.
Ann and I had a meeting with Dr. Weiss prior to the infusion to discuss current health needs and what the future may hold after my infusion and what the next steps would be after the chemo. My blood counts are slightly low from a combo of the radiation and the chemo. I need to keep an eye on them. I received a WBC booster shot with this infusion. This should help some. If there is any issue with my RBC or platelets, I would have to consider a blood transfusion. The max I will be able to go on this chemo regimen is four infusions. This is my second, so only two more after this. I will be getting scanned on 1/4/22 prior to my next infusion to determine if the chemo is working. It is pretty nasty stuff, so there is no point in continuing to give it to me if we aren’t getting any results. It has made me feel terrible some days; probably the worst I have ever felt one day. But fingers crossed we are pass that now and round two will be much smoother.
So, here we are. Four days past the second infusion. Two weeks away from Christmas. It’s time to celebrate life. I have family returning for Christmas. Cousin Eddy is parking the RV in the driveway and Buddy the Elf is trekking through the Candy Cane Forest all to come celebrate. We are not just celebrating my life, but all of our lives. I couldn’t keep going at this pace if I didn’t have all of you in my life. Keep bringing the Thunder daily, even if it is just a little rumble. The love you share with me gives me the power to keep plowing forward. Never stop sharing your energy.
I apologize for the long delay in keeping you all up to speed on how things have been going, but as you have seen it has been quite the bumpy road and getting an update to the blog just has been a task, I haven’t had the physical energy to complete. I will have a much more punctual update next time I promise. #feelthethunder
