Summary of Cancer Journey

Now I can start to bring you up to speed with my battle with cancer. In my last post copied from the CB site, I mentioned that I would be going back to Mayo Clinic in March for follow up scans. This is common practice for anyone dealing with cancer. I usually go every three months, give or take a couple weeks. The results weren’t exactly what I wanted. This is a fear I have every single time.

Backstory and Big Surgery

Rewind back to my diagnosis in 2019, they told me of several areas that showed cancer during a PET scan. I was diagnosed with stage IV thymoma. At first, I was told that I wouldn’t be able to have surgery because the tumor was so large and too many vital areas were involved in it. My prognosis wasn’t good. The tumor was attached to my sternum, heart, lungs, chest cavity lining and more. There were spots on my ribs and liver. After the initial rounds of chemotherapy, a few spots disappeared while others shrank significantly. In November 2019, after months of prayer and chemo, I became a candidate for a thymectomy. This meant having a full sternotomy and double intubation so the surgeons could access each lung and side of my chest cavity individually. They wanted to scrape out the chest lining as much as possible. I was told the surgery would take between 2-4 hours. After going under, I woke up about 14 hours later. Not only was this a big shock, but I was also in a tremendous amount of pain! The left side of my body, particularly my upper body, was super swollen. My arm looked like an actual balloon. I couldn’t believe when I looked at my hand that it was actually MY hand.

A Group Effort

It wasn’t until the surgeon came in (I think the next day, but the timeline is a little fuzzy) that I found out what went on during the surgery. While performing the resection, they discovered that the cancer had gotten inside some of my major veins. This required additional expertise and a separate vascular team had to be called in. They ended up removing some sections of veins including a good-sized portion of my superior vena cava and left brachiocephalic vein. They created patches or new veins out of bovine (cow) tissue. This means being on blood thinners the rest of my life. Unfortunately, after several months of narrowing, the patched area closed off completely. By that time, my body had created several new pathways for blood to move around and back to my heart. Although this leaves areas of my body resembling some sort of sci-fi creature, I am thankful that God created our bodies with the ability to regenerate veins on its own. I experience some dizziness and poor circulation, but I’m still alive so I’ll take the bad with the good.

A Few Side Effects

Another complication from the big surgery was that my left vocal cord became paralyzed. This apparently is somewhat common in heart surgery patients due to the fact that the nerve that controls it runs down around the heart. So, I woke up with only a whisper for a voice. Everyone who knew me also knew that I liked to talk so this was quite the change for me. Talking (whispering) became very challenging. I struggled sometimes to even get a short sentence out. Singing and yelling became impossible (something my family probably wasn’t too sad about). In January of 2021, I had another operation called reinnervation to try to help it. They used a different nerve and attached it to the vocal cord nerve to stimulate it to “plump up” and allow for sound to be made. It took until about July of 2021 for it to kick in. I was very thankful for that. Present day, I would say my voice is back to about 75% of normal. Another nerve that was damaged or removed was my left phrenic nerve. This controls the left side diaphragm. So, with the left side not working, I am not able to get good deep breaths and my left lung doesn’t fill with air like it should. The right side does a pretty good job compensating for it, but I definitely feel the side effects of it. I’ve scaled back my activities quite a lot. I still kayak and hike when I can but not nearly as much or as far as I used to.

Moving Forward

I guess the big surgery was a success in the fact that they were able to remove most of the cancer. However, there were some positive cancer margins in my veins and some possibly left behind in my chest lining. I underwent several weeks of radiation and chemo to try to kill it. For a while, I had thought maybe it worked. But last year in May, I was told there were several areas that appeared to be new tumors growing in my chest. In June, they did more radiation on one specific area between my heart and spine that was more urgent. It stopped the growth to that area but the other areas were left to grow.

So, I have been trying to cope with the fact that cancer is growing in my body, and we aren’t doing anything about it. It has been very hard for me. I found that it is even hard to write updates about my situation when there is not very much good to report. Even as I write this now, I am having doubts as to whether I should even be putting this out there. I want to be the positive person that I used to be. I want to always see the silver lining. I want to support others in their lives. I am hoping that by talking about this, I can help other people. And also, myself.

Up to Date

Okay. So, in March 2022, I had requested to have extra scans done on my abdomen, too, since all my previous scans were just of my chest. I was worried that cancer could be spreading to other areas. Unfortunately, my fears were confirmed. They found a tumor growing in my liver. It needed almost immediate attention. At first, we planned to have ablation therapy on it. After an ultrasound on the area, it was clear that that was not an option. The risk of damaging or paralyzing the right phrenic nerve was too high. Remember, I already have a paralyzed left diaphragm, so I really need the right side to work. We decided to have targeted radiation on the tumor. So, after taking a quick vacation in Florida with my family, I had the radiation done in April. It has been about 5 weeks since completing it. I won’t know if it was successful until my next scan in June. I have been feeling very fatigued since then, which I hope is normal. After my scans in June, we will likely make a decision on treatment for the other chest tumors. I could use prayers for that. I am very nervous and scared for what’s to come. They are thinking I will have to start chemo again sometime this summer. I just hope and pray to God that it kills it this time.