September Update

Happy fall, y’all! Well…. almost. It sure has that fall feeling in the air, though. The cool crisp morning air that lingers on until late in the day makes me want to curl up by a fire with a cozy blanket. I can hardly believe that two seasons have gone by since my last blog post. By the grace of God, I am still here to enjoy them.

Spring came and went as usual with a lot of snow, some harvesting and processing of maple syrup and a ton of stinky, wet manure. Due to health and a hectic schedule, I didn’t get a garden in this year. It’s too bad because the people I know who did plant gardens had an excellent year with bountiful harvests!

Our summer was not as summery as I would have liked. We didn’t get the extreme heat like most parts of the country got and the bugs were as bad as I remember ever seeing in my life. Even this past weekend, the mosquitos were still out. I’ll be thrilled when they finally die off for the year. I guess that gives me a reason to look forward to winter.

School Is Back In Session

The kids have started a new school year and have been very busy for the past 6 weeks with volleyball and football. I really enjoy watching them play. I see so much improvement each year. The only downside is that many of the schools that we play against are 3 – 4.5 hours away. It makes for long bus rides and tired drives home. I try to travel to as many of their games as possible, but it can take almost an entire day. These days are fleeting, though, so it is time well spent. Other than that, they are doing normal teenager things. They work hard and play hard (when they have time). Now, between school, sports, and work, it seems the little bit of family time we had is taken up by homework.

Cancer Update

In my last post, I mentioned that I was looking into a second opinion at an alternative treatment cancer center. Thanks to help from a few very generous friends and family members, I was able to go and meet with a new doctor. He seemed confident that the type of cancer I am fighting would be curable with his treatments. However, because of our broken insurance system, alternative treatments are not covered by medical insurance. Even when the treatments are less expensive than conventional treatments with far less adverse side effects. It was very disheartening for me to hear that there could be a cure but the cost for it is out of my reach. It would cost between $130k-$150k just for the medications.

The consultation I had was good for 6 months and at that point, I decided to take a few months to ponder it and try to come up with a way to make more money to pay for it. That was at the end of March. By midsummer, I decided to make some diet and lifestyle changes to try to fight it on my own. It is a lot more work and time but I’m praying it is helping. I feel healthier and have more energy so that is a definite plus!

Shift in Focus

On July 2nd, I responded to a structure fire in my fire department’s district. I hadn’t run the water hose at a fire since my open-heart surgery three years prior. I felt pretty good that night and took the opportunity to be more active in my firefighting duties and ran the hose for quite a while. After working hard under the extreme heat produced by the massive fire, I felt a change and extreme pain in my chest.

If you remember from previous posts, I have a unique situation with my veins resulting from complications of the cancer resection surgery and the radiation treatments that followed. The result was a complete occlusion of the left brachiocephalic vein and severely occluded superior vena cava (SVC). The superior vena cava is the main large vein that connects to the top of the heart. That vein is usually about as big or bigger than your thumb and mine had decreased to the size of a toothpick. This has caused several of my veins to produce a reverse flow of blood to try to find a new path to my heart as well as the creation of many enlarged collateral veins.

After the fire incident, I ended up in the ER and knew that something had gotten worse. It was clear that I overexerted myself and put too much stress on my unique vascular system. Although, there was nothing they could do for me locally, the doctor I had was amazing and even took the time to talk and pray with me. I told him that even though I wasn’t physically better leaving the ER, I was mentally better. I listened to my body and took it a little easier for the next two months. When I finally had my follow up scan at Mayo Clinic on August 30, I found out the SVC was even smaller and my vascular doctor said we need to do something soon while there is still a chance he can intervene safely.

New Plan

After discussing the situation, my doctor recommended I go in for a procedure on September 25th. He is going to place a Gore VBX stent graft in my SVC. It is like a tube that has solid outer core so that if my SVC (which is mostly scar tissue now) tears while placing the graft, it should be able to contain the blood within it. The graft to replace my toothpick sized SVC will be about 3 inches long and about a half inch wide, so a major difference. If everything goes as planned, they will go up through my right common iliac vein, through the inferior vena cava and through my heart to access the superior vena cava.

Below is a screenshot of a normal vascular system that I highlighted to better explain it. The green arrows are the path they plan to use to place the graft. The area between the red lines is the part that will be grafted. The section circled in yellow is the left brachiocephalic vein, which no longer exists in my body. The blood that is supposed to go through it has rerouted mostly with a reverse flow up through my jugular, through my head and back down the right side of my body. Hopefully the new stent graft will help all of this.

Prayer Request

Today is now Thursday, September 21. It has been very scary for the past few weeks thinking about all the possible scenarios of what could happen during the procedure on Monday. I am putting my faith in God that this is part of His plan for me on this healing journey. I try to calm my thoughts as best I can and lean on Him at all times. My prayer requests are that procedure goes great and that I will wake up feeling better than before, that my body can start fighting off cancer the way it was created to do, and that my fears and anxieties go away and are replaced with peace and calm.

Thank you to everyone in my life who has supported me and encouraged me to keep the fight going. I love you all very much and couldn’t have gotten to where I am without you. Thank you again for following along on my road to healing.

God bless you,

Pauli