COVID-19 has definitely contributed to the long pause between posts. As the virus began invading America and spreading throughout the world, I was headlong into my second round of chemo. From the beginning of this cycle, there were problems. My immune system was already beaten down and it was decided after problems with severe drug reactions and postponements due to extremely low immunity levels during the first two rounds, to have the final two rounds administered in the main hospital instead of in the MSTI chemo suite.
By the time Jo and I were getting ready my last two rounds of chemo the Coronavirus was in full spread. I was basically in self isolation already because of my immune system. My biggest challenge since the big surgery had been putting on weight and lack of stamina. The added stress of chemo was there, but mostly our concerns revolved about COVID-19 and how little it seemed was being done to prepare for the virus.
Photos from my last chemo round with my hero Jo on the 4th floor.
For the first of the last chemo rounds I was in bed for 12 hours. I went in when it was dark, and left in darkness. It was kind of surreal. The last round in late February took around 8 hours. Jo dropped me off and my sister Debbie picked me up. Chemo is exhausting and I can’t thank the nursing staff at St. Lukes enough for the care they provide.
Needless to say, I was stoked to finally get chemo behind me and looked for to the next step, the CT scan. While I continued to deal with chemo side effects, problems with eating through my new plumbing and gaining weight, COVID-19 exploded into full view in March. Now suddenly we were unable to purchase disinfectant products we’d come to rely on to help keep me safe. We were also unable to purchase many of the soft food diet favorites that made eating without a stomach and esophagus a little easier. Thanks hoarders.
By this time Spring was upon us too! This is one of my favorite times of the year. The sun sets down our North End streets Stonehenge style. But this year the streets were beginning to empty out as the schools were closed and the city ordered people to start staying home and limit their travel. The State of Idaho announced a stay at home order a few weeks later and the city closed park playgrounds. Despite the pandemic, it was now time for a CT scan to see where we were at with the cancer. My scan was scheduled for March 23rd and a followup with Dr. Alurri to review was planned for March 31st.
Prior to the scan I got a call from St. Lukes to pre-screen me for COVID-19 and to let me know about new screening measures in place at the hospital because of the pandemic. I went in early that morning anticipating the new protocol and was greeted by a security guard who was checking people as they entered. It was eerily quiet in the usually bustling lobby. Access was limited and thankfully everyone at the hospital was wearing masks and gowns… the now famous PPE. My scan came off without a hitch and I went home to await my appointment the following week with Dr. Alurri.
On the Friday before my appointment with Dr. Alurri I received a pre-screening call from St. Lukes with the usual insurance questions and new COVID-19 questions. By Monday, the day before my appointment, things had escalated and I got a call canceling my appointment with Dr. Alurri. Keep in mind this was a very big appointment for us. We thought we would find out the ordeal we’d been through was successful… or not.
We had been on pins and needles leading up to this moment for 3 months. With multiple invasive tests and surgeries, a round of chemo, two simultaneous major open cavity surgeries, a two week hospital stay and another, more complicated round of chemo behind us, and the drawn out isolation, we were ready for some good news and the opportunity to ring the bell at MSTI!
“What’s the Bell”
Each day I would go to MSTI at St. Lukes in Boise for treatment, a blood draw or port maintenance, we would walk by “the bell”. The celebratory purpose of the bell is self evident. And, while there is debate about how well the bell provides hope or if it is insensitive to those who won’t be able to celebrate an end to chemo, a joyous celebration is in order for those who do make it through chemo successfully. It also gives the medical staff hope during the days when there is little to be thankful for. I had a lot of mixed emotions when I thought about finally being able to ring the bell. That bell had deep meaning and it would signal a huge chapter in my life closing and the beginning of a new, positive chapter.
The nurse who called to cancel my appointment because of the new COVID-19 protocols told me Dr. Alurri said my “scan was clear”. I asked her if that meant the scan didn’t show cancer. She said she’d have to check to be sure. I shot off a message to Dr. Alurri with the $60,000 question.
The day of my now cancelled appointment I got a message back from Sharon, Dr. Alurri’s nurse that said my “assumption” there was no noticeable cancer was correct! She added “yippeeeeee” to underscore the fact we had evidently won my war with cancer and I could being my rehab whenever possible.
Of course I can’t start rehab because of COVID-19. At this moment in time, that almost feels a bit selfish.
I certainly wanted to let my wonderful family and friends we had won nonetheless. It’s important to me to thank them all for their support! It felt bittersweet. The significance of “the bell” wasn’t lost on any the cancer survivors in my circle of friends. And my gratitude to Jo, Kelsey, Noah and Ben can’t be expressed enough.
I have appointments in late May for a blood draw and consultation with Dr. Alurri. I’d like to celebrate again then with my MSTI “family”. I’m also waiting for word from my awesome surgical oncologist Dr. Griffin in Utah about what he sees in the scan. Possibly to illuminate me on some of the problems I have consuming food through my new plumbing.
For now it seems I can do what I can to adjust within the confines of the Coronavirus and extend my self-isolation. I’d be lying if I said the COVID-19 stay at home order isn’t a big deal personally. I have had to be cautious for most of the past year or so about infections and disease. My success staying out of trouble is another testament to the care and support I got from Jo, Kelsey and Noah. It is disappointing for all of us to have to endure self isolation.
Today is April 7, 2020. The tumult of our time dealing with COVID-19 continues. There is a sense locally we are nearing the apex of the curve as Idaho’s death toll hits 13 and cases top 1,100. I have little confidence in the numbers, but time will tell. We’re holding the course in the interim, struggling to know what’s best for business while keeping everyone as safe as possible. I can tell you the journey has become very hard and I look forward to the next chapter – beating back Coronavirus and starting the rehab process.
While I wait for that time to come, I will be putting down my thoughts for others who have to go through what I’ve been through in hopes of lightening their load. I close this post with photos of me Kelsey took and posted recently which I had not seen. Thanks to everyone who has taken the time to read about A Cancer Journey.