A little forewarning, this post is a bit long and it is going to take you on wild ride of lows and highs. These past few weeks have been some of my toughest on cancer mountain. For 3 years now, having skated past many close calls and the expected painful path most colorectal cancer patients experience, I liked to call myself ‘an imposter in the cancer community’. That changed for me this chemo cycle (#43) and I will not be saying that anymore. I think now it’s more appropriate to say “I’m a climber and a trailblazer on cancer mountain, aiming for a cure”. Here’s what happened during the past few weeks to prompt that change.
- 10/27, Chemo Round 43: All started out fine on Tuesday, 10/27. We began Round 43 with the typical 1-hour infusion of Panitumumab chemo down at UCSF. In addition, the same day, we started the other half of my chemo cocktail, a 14-day schedule of oral Capecitabine chemo pills.
- 10/29, Biopsy Procedure: Two days later on Thursday, 10/29, we performed the liver biopsy required to get me in the Clinical Trial. It was to be a pretty straightforward procedure aimed at getting a sample of my liver tumor for study by both the Clinical Trial and UCSF Pathology. Think 1 sharp stick in the chest, under CT-imaging guidance, zeroing-in precisely on my bad stuff. It’s billed as pretty standard outpatient stuff with little expected post-procedure fallout, a relatively simple 40 minute procedure. We expected 3-5 days of a little discomfort that could be handled with a little Tylenol. But, after 3-years on cancer mountain with 40+ rounds of chemo and multiple surgeries under my belt, I am not your typical patient.
- 10/30, Trip to the ER: Friday morning, 10/30, I awoke to find the pain meds from the procedure had worn-off completely. I was in severe pain (7-8 on the UCSF 10 scale) and I asked Mady and Nat to take me to Petaluma Valley Hospital ER. At the PVH, they were able to stabilize and address my pain issues as well as perform X-rays and CT Scans to ensure the biopsy procedure did not leave or create any unexpected complications. Mady was our superstar problem-solver throughout, coordinating communications between PVH and UCSF across all our key players, and driving like Danica Patrick cross-town to PVH. I was back home and resting by mid-afternoon.
- 11/1 – 11/14, Rocky Balboa Goes Down: I spent the next two weeks mostly horizontal dealing with the biopsy recovery, pain medications, and extreme fatigue from chemo Round 43. My chemo dosages carried on throughout all of this with morning and evening dosages as called for by my 14-day chemo cycle regimen.
- 11/13, CT Scans on Cancer Status: On Friday the 13th we did additional CT Scans down at UCSF. Thwarting any Friday the 13th bad mojo, we spotted a rainbow on the drive into the city and my CT technician was named Angel. Note, I did have this very same powerful combination of a rainbow plus a CT tech named Angel once before. It had happened 3 years ago to the very day, on 11/13/2017, for my very first big scans up in Santa Rosa, CA.
- 11/15, Back On My Feet: Finally, with Round 43 chemo complete, pain meds removed, and my energy levels on the rise, Rocky Balboa* finally got up off the mat and started to resume some regular activities. I was able to get on my bike Sunday and do a little 1 mile loop around the neighborhood. Compared to the expected recovery time of the biopsy, mine turned out to be more like 12-15 days and it continues.
- 11/16, Amazing News: My CT Scan results from Friday, 11/13, show that my tumors have been significantly reduced in size by the last 3 chemo cycles (… a total of 42 days, 3 infusions, and 336 oral chemo pills over 3 months). And, that has earned me a ‘chemo vacation’ like we had at this very same time last year. There will be no more chemo for me until 2021 – WOOHOO!!
There were a lot of take-aways from this rough patch. I’ll try and keep it short to the very big ones. And, I should qualify this is all based on my own experience. It’s important to note every cancer patient has their own unique experience and challenges. Each of us needs to find what works and doesn’t for us and support teams in our own ways.
- Primary Caregivers Face Difficult Challenges As A Result of COVID-19 Restrictions.
It wasn’t lost on Mady and me that the biopsy out-patient process, like many other procedures, has been compromised by COVID-19. Today’s restrictions and precautions for caregivers and visitors often mean the patient gets dropped-off, checked-in, and deals with everything solo, once inside the hospital. That’s not perfect when it comes to hospital discharge, special instructions, medical read-outs of what to expect post-procedure, etc. — especially when the patient is still floating and buzzing on procedure meds. It is really critical that the patient’s primary caregiver, not just the patient, be given a detailed recap of the procedure, any red-flags issues to watch for post-procedure, and a clear plan of action should things go south. This should be a key step you and your provider agree upon ahead of any out-patient procedures like this.
1) COVID-19 Information for Cancer Caregivers – Dana-Farber Cancer Institute
2) Taking Care of Someone with Cancer During COVID-19 – Memorial Sloan Kettering Cancer Center
- Managing Physical Pain.
Through this biopsy and chemo round we met Mark, the Hulk*. I’m not sure if my eyes turned green like David Banner’s when the severe pain hit, but it felt like it. I had a combination of soft tissue pain running across my chest and referred pain in my left shoulder. Very thankfully, we learned my pain was all related to the biopsy procedure and not from any advance of cancer. Even so, it made me dig in to investigate the different types of pain cancer patients may experience. UK Cancer Research says there are 5 types of cancer pain – Nerve, Bone, Soft Tissue, Phantom and Referred.
1) Different Types of Cancer Pain – UK Cancer Research
2) Facts About Cancer Pain – American Cancer Society
- Managing Emotional Pain.
Friday morning’s pain just brought out the worst in me. I was hurting, frustrated, irritable, angry, and a monster to everyone around me. It was only after Mady got me to PVH ER and the pain meds IV got going that I settled down. Later, like Bruce Banner when he returns from The Hulk form, I had those awful feelings of ‘what just happened?’, ‘who got hurt?’, ‘how could I become and be such a monster?’, ‘how could I be so mean to the people I love?’. With that came a lot of sorrow, guilt, and shame for me. Meanwhile, my girls, Mady and Nat, had to deal not only with me but their own fears and emotional pains as well. It was really tough on all of us … especially them. This is the incredibly hard job of primary caregivers, not only in emergency situations, but all the time. Volumes have been written on this topic for both patients and caregivers. I encourage you read up on this and take proactive steps to help you and your family prepare for and manage the challenges cancer will put on your bodies and your emotions.
1) Feelings and Cancer – National Cancer Institute
2) Emotional Impact of Cancer – Univ. Michigan
- Managing Fear, Uncertainty, Anxiety.
This could be the toughest challenge of them all. Through our cancer experience, my family works hard to remember that ‘anticipatory grief’ is little more than lost time and energy. So first and foremost, try not to spend time worrying about endless ‘what if’s’. You will drive yourself and your support team crazy. Focus on facts and try to worry only when the time is right and merits it. That said, you will have times when fears, uncertainty and anxiety are very, very real. Like physical and emotional pains, volumes have been written about managing fears and anxiety too. I encourage you to read up on it and develop your own approach, habits and behaviors. Find ways that work for you to visualize good outcomes and support any and all positive feelings you can muster. Beyond that, I will say from personal experience, I believe there is something very, very deep in all of us that comes to the surface when we are really up against the wall. A few years ago, my dear friend, Joey Dumont, shared some thoughts about this as it relates to mediation and spirituality. We talked about visions some people experience through visualization and mediation exercises. I mentioned I do some deep breathing as I try to go to sleep each night. He explained some believe that moment right before you fall asleep is a very special meditative state. Sometimes I’ve experienced cool moments when I either see something just before I drift off or later in my dreams. This happened to me when I was turned away for chemo Round #41. I was really concerned and racked with worry later that night. In 40 prior rounds of chemo, I’d never yet had my ‘come back another time’ card punched. That night, as I did my breathing exercise, I felt something very deep rising in my chest. It was strange and strong and it was clearly two forces … Now this may sound super crazy, but I envisioned one force looked like Clint Eastwood’s gun-slinger from High Plains Drifter and the other force looked like Don Knotts’ jittery Barney Fife from Mayberry. As these two forces sat across a camp fire … the gun-slinger said very cooly to the very shaky Barney Fife ‘hey, I got this, why don’t you go get some sleep?’. I awoke the next day and decided that was my Courage talking to my Fear. I know they are both in me. And when the time is right, they will work together and fight together to protect me.
1) Anxiety – American Cancer Society
2) Relaxation Techniques and Mind/Body Practices: How They Can Help You Cope With Cancer – CancerCare.org
ALL THAT SAID …
Thank you for reading this far!
Amazingly, we are on track and we keep rollin’!
I am through Round 43 of chemo.
I have a ‘chemo vacation’ until the New Year.
UCSF has the tumor tissue needed to get me into the Immuno-Oncology Clinical Trial.
Despite all the hard challenges we have faced, we are exactly where we hoped to be.
So Thanksgiving starts RIGHT NOW for Team Crafty, near and far!
We are forever grateful for all your support!
You all carry me, Mady, and Nat when we need it most.
Support cancer research.
* We’ve added some Incredible Hulk and Rocky products to the Team Crafty Shop.
We hope you find something here to the brighten the spirits of cancer fighters close to you.
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