Dec 16, 2020 Latest post:
Mar 29, 2021
Brian started experiencing back pain in September 2020. He went to the chiropractor (only 2nd time in his life) and had a total of 3 appointments. In October his back was still hurting but now he also had bloating. After a few weeks of this he decided it was time to see the doctor. Before scheduling we acknowledged that we had not been completely satisfied with our clinic over the past several years and wanted to try something different. A close friend of ours had a really positive experience with a new clinic that provides "Direct Healthcare" - this is privately ran healthcare that charges a monthly fee for all services available within their means - no 3rd party billers/insurance. Although we had insurance we were intrigued by the reputation of care and thoroughness. Within 24 hours of registering with this clinic Brian had his first appointment. This was October 28th. Within an hour he received blood work, x-rays, TB test, flu shot with some results already ready to share.
While some blood work was still pending, at this time it looked like he may have had some blockage in his intestines and a stool softener was recommended. The following day, on our way to the Oregon coast for a getaway (thank you Ryder), Brian received a call from his physician that some of the blood work had come back and his cholesterol was very high (oh crap, a walking heart attack and now were heading to the coast for shellfish and butter). The following Monday he started a medication to control the cholesterol. Later that week he went in for a follow up x-ray to see if the blockage had resolved after a week on stool softener. It had. His doctor shared that some additional information had come back showing concerns in his liver enzymes and he wanted to refer him to Yakima for a CT scan. CT was pushed up the schedule and completed the following week, November 9th. The day after the scan Brian's doctor was asking both me and Brian to come in to share the findings.
This was the first indication that something was seriously wrong. We were devastated. The doctor shared that there was a large mass on his liver and nodules throughout. The lymph nodes were enlarged and there was thickening of the descending colon. He could not say what it was but could say what it wasn't and what it might be and that he would be referring us to oncology at Virginia Mason. On November 16th, five days later, we were at Virginia Manson - Seattle having a liver Biopsy.
Two days later, November 18th, we were called in by his primary doctor who had the results from VM. It was Colon Cancer. It had started in the colon and had spread to the lymph nodes and liver. The largest tumor in the liver was approximately 4 inches. Staging had not yet been completed but we knew it was not stage 1 or 2. We were hoping for stage 3. We went home in complete shock and devastation. We fell into a spell of depression and hopelessness. Don't google the odds.
… A little note on what we've learned about Colon Cancer - It is most commonly detected during colonoscopies which historically were completed at age 50 and only recently changed to age 45 due to increase in cases in the US. Once symptoms are present it is often metastasized. Brian is 44. He was not living with symptoms for more than a month. There may also be a genetic component of which has not yet been found for Brian. Needless to say, Mel will be getting a colonoscopy in her 30s.
Two days later, back to VM Seattle for a Colonoscopy and upper CT scan to have it staged and determine the spread and severity. Results from the Colonoscopy were shared that day. Fortunately there was no blockage requiring surgery, unfortunately it was stage 4. CT results to determine spread would be shared the following week at another appointment.
Now the big appointment, November 24th; Colorectal surgeon, Liver surgeon and Oncologist. After a very long day of meeting with each physician independently we learned that surgery to remove the cancer was not an option. We would need to start with chemotherapy and hope that it will shrink the tumors opening the doors to other treatments. At some point the oncologist shared that living 3-4 years is probable, the rest is unknown and will depend on how his body responds. We also learned that it may now be in another organ (currently in the lymph nodes, colon and liver) and another scan needed completed. At the same time of the scan they would be surgically placing his chemo port. This was scheduled for later that week.
Thanksgiving fell right between these appointments. We got to see our Karineey Bean and Joe, Ryder and mom and dad. All had self quarantined and those that had to work around people got COVID tests. They took as many precautions as they could to spend the holiday with us. It was so appreciated and very special.
Black Friday was surgery day for us. It went well with no complications. Brian went home with some scripts for pain management which were needed. The following week was our first week without appointments outside our home! The idea of a semi-normal week brought us so much joy. We did have two video calls; one to discuss CT results and if the cancer was in another organ and the chemo plan and prep. We learned that the cancer had spread to the Peritoneum which meant one less treatment option.
Assuming Brian's young and able body can handle it, the chemo plan will be very aggressive. He will have chemo for 3 days every 2 weeks for 2 months followed by a CT to see the progress and plan for next treatment. The first of the 3 days will be at the hospital and then he will go home with his chemo. The pump will run continuously for 46 hours once leaving the hospital. It is then removed by our local hospital and Brian is given a shot to help boost his white blood cell count followed by 10 days of rest and recuperation from the harsh chemicals.
Chemo started on December 8th, mom's birthday. The first morning home was relatively good. Brian was able to take Molly for a walk and do some chores. By afternoon he was back to bed and not feeling well. Molly did not know what to think and she was very freaked out by the sound of the pump. Brian continued to have good and poor moments though mostly poor. The night and early morning after the pump was removed were the worst. Fortunately and most importantly, Brian was able to stay hydrated and well nourished.
Let me just add a few fun details that I have left out of this story. Before every procedure, Brian had to get a COVID test 2 days prior to the appointment. Keep in mind we are now approaching new peaks of cases and the holidays. Do you think we can get a test back in 2 days...? Needless to say we had challenges. Fasting is FUN! … NOT. Brian lost a bit of weight after the fasting requirements for the procedures which would have been welcomed had we not been moving towards Chemo. Appointments in Seattle are not quick. They are an all day ordeal. Sometimes leaving at 5:00 am and getting home at 8:00 pm. Not to mention driving over a pass at the beginning of the snow season. Lastly, before I get back to the timeline - mask wearing, all-day-long. This really is the smallest of annoyances but it is there - very necessary - but not fun. Oh, forgot to mention how crappy it is not being able to spend time with friends and family while we go through this journey. We were somewhat careful before but now it is imperative that we keep Brian healthy. Mel has completely quarantined other than work. She is so careful and we are so grateful for her.
After those fun drives over the pass and long wait times at VM we started considering our options for chemo infusions. After weighing it all we decided to transfer our chemo infusions to North Star Lodge in Yakima, while keeping our cancer team at VM. This has been a very difficult decision but time, safety and stress management are very important to us right now. We had our first consult yesterday, 12/11. Our next treatment will be there on 12/22 and instead of having a 14 hour day trip, we will likely have a 7 hour day trip, yay!
This is our story that started in October and is current as of December 12th. I will move further notes into the journaling section of the Caring Bridge. We want to express our extreme gratitude to our family and friends who have been so supportive and generous. It truly is part of the healing process.