Ahoy people,
It’s been quite a while since I updated this part of the blog. In fact, I don’t think I’ve updated The Cancer Journey since the blog launched late last summer. I’ll stick with the honesty policy on this one- I’ve been avoiding updating this component for several reasons. These reasons have developed over the past 6 months; although, subconsciously, I recognize that they date back much further than just 6 months ago. With this post, I look to share the eerie connections from the past, along with a current prognosis update regarding my health and battle versus cancer. Ultimately though, past and present omens, in combination with signs from The Universe made it seem right to wait on updating this part of the blog until a specific date- my 33rd birthday (which happens to be today!).
Let’s go all the way back to Halloween of 2018. In fact, I challenge you to try and figure out what costume you wore that year and share it with me via email… Throw in a photo if you’re feeling ambitious. I wore the usual slice of pizza costume (shoutout to Nana Gedles who handmade that gem!). Anywho, Halloween was shaping up to be a beauty as I had completed all of my treatments in August and was preparing for my final surgery, expecting to be cancer free after a long 12 months of grinding it out through radiation, chemotherapy, surgeries, and more chemotherapy.
Well, that wasn’t the case; complacency had set in and life decided to wake me up with a nice kick to the teeth (or to the ass in this case).. I don’t need to go into too much detail as you know the story: I had a cancer recurrence just three months after completing treatments. It was devastating- cancer patients usually go about 3 years before a relapse, not 3 months. Not only that, but my pre-op bloodwork and scans had all checked out, showing no signs of the disease. The relapse told us two things. 1. The cancer is extremely aggressive and likely unique in it’s form and 2. Kaiser was no longer an option, it was time to take a new approach and find new medical care.
Now that we’ve got that refresher out of the way, I’ll explain why the recurrence and winter of 2018 has been lingering in my subconscious for so long. After the recurrence, we teamed up with UCSD to conduct a “Molecular Profile” of the tumor/cancer. The tumor was biopsied and sent to a laboratory in an attempt to find specific mutations in the disease. Why didn’t this cancer respond to all of the previous treatments? How is it back this fast? We hoped the molecular profile would provide some answers.
And it did. Quest Diagnostics found three very rare, distinctive mutations to my cancer which explains why the standard treatments weren’t as effective. These mutations are called the TP53 mutation, KRAS- G12C mutation, and PTEN mutation. The molecular profile is a report which identifies the mutations, along with treatments and evidenced based studies or research to help the professionals develop a plan to fight the disease. Unfortunately, with these three mutations, there isn’t much of a treatment plan that is effective at curing an individual of the cancer. These rare mutations are resistant to many of the treatment options currently provided.
The molecular profile also provides data and statistics regarding the specific mutations of the disease. Some of the data shared was the Overall Survival rate of the KRAS mutation. As stated in the report, “Patients with tumors positive for mutations affecting codons 12 and 13 of KRAS have shorter OS… Median OS 30.2 months for KRAS mutant cases”.
30.2 months. I vividly remember reading the report while standing in my kitchen back in December 2018. Naturally, I had to do the math- The tumor was biopsied a month earlier, November of 2018. I’m no mathematician, but I’m quite sure 30 months is equivalent to 2.5 years. While standing in the kitchen, I realized 30 months from that point would land me in May of 2021, right around my 33rd birthday.
Reading that report and analyzing the information was difficult to comprehend. A month prior, I had anticipated being cancer free, ideally forever. Just a month later, I’m reading a letter which felt like a death sentence. At the time, I decided to forget the data. Ignore it completely, throw it out the window. I was already well outside the regular data norms- not many 29 year olds get colorectal cancer, so my plan was to put the molecular profile and the OS outside of my mind, go back to the basics, and try to focus on the good.
Fast forward to December of 2020, 2 years from reading the Molecular Profile.. I was home alone that day at Nevada House (naturally, doing the whole Risky Business routine and dancing to some old time rock n’ roll), when I started to feel a bit funky. This was early evening, so I started to shut it down and post up on the couch for a HP marathon. Slowly, but most certainly, my body started to show serious signs that something was wrong- temperature started fluctuating, significant pain developing in the kidney/flank, hot/cold sweats, vomiting- well past the point of having the ability to retain water. The body was revolting. This continued into the night and next morning; at times being so aggressive that I was almost certain I was going to kick the bucket.
The next morning my roommate got home and made the executive decision to drive me to the UCSD Emergency Department. I had checked in, horribly dehydrated with the body breaking down rapidly; I’ll never forget the desire for water, liquids, fluids- ANYTHING to get me hydrated. The dehydration was another level I had never experienced, and after finally being permitted to drink water- the cold liquid washing down my throat and replenishing my body was a relieving experience like nothing before (of course, the hospital also pumped me full of fluids). After a battery of tests and bloodwork, the doctors determined I had developed a significant kidney infection which was leading to a multitude of complications. It was a good thing my roommate had taken me in at that time.
I share this with you because The Universe seemed to be aligning once more. I was admitted to the hospital as they were attempting to get the pain and infection under control; along with the need to conduct more tests, scans, and put in a PICC line. I had anticipated a quick stint, thinking I’d be out in a few days. It was much more complicated than that. Out of all my hospital stints, I think it’s possible this one was the most difficult; not necessarily difficult in terms of my physical well being, rather the mental barriers I had to figure out how to get over.
It was a Thursday night when my oncologist entered my hospital room, about a quarter past 6 PM. I was deep into a TV show called Live PD (essentially a 2020 version of Cops) when Doc reached for the remote and shut off the TV. Doc sat down and we started having discussions as to my current health, the kidney infection, the disease and overall test results. It was obvious he was concerned; he continued to explain our approach to treating the disease, reminding me that it was unlikely I’d ever be cured of the cancer. It was also obvious that my body had slowly been breaking down. It seemed I had one foot in the grave on several occasions the previous 12 months, how much more could the bod really hold up?
Cancer is a horrible disease. It can be a slow death, yet there are times when it seems it picks up and takes over. That weekend, I had been feeling fine one day, and within hours, hospitalized with some serious complications. My doctor continued to explain that it was likely these types of hospital stints would continue as the disease continued to grow and resist the current treatment plan. We talked about the future, how long I could hold out, how the body would respond, and also the risks and complications that certainly lie ahead. Doc made it clear that we were fighting in a war that we simply couldn’t win.
To be blunt, he then shared another option I’d have as a patient with a terminal disease- Death with Dignity. Death with Dignity, or the End of Life Option Act was passed into California law on June 9th, 2016. This law allows terminally ill adult California residents to request a drug from his or her physician that will end his or her life. Individuals who choose to go this route are not considered to have committed suicide, although I’m certain there are different perspectives on that idea.
I didn’t expect to have that conversation with my doctor. I knew my disease was essentially terminal, but I suppose you never really anticipate that discussion. It was heavy. It still is heavy. It was a draining discussion, but Doc took over 3 hours to be with me and explain what that process entailed. To start, the patient must make 3 requests for the aid-in-dying drug to their physician. Two of these requests need to be verbal discussions (at least 15 days apart), while the third is documented in a peculiar form that is witnessed by two other individuals. The patient is also required to seek input from a secondary physician, confirming the terminal disease and ensuring the individual qualifies to use the aid-in-dying drug. Finally, the patient and doctor must revisit the conversations every 6 months based on the individual’s health status.
Doc continued to explain details to the process. For example, there is only one pharmacy in San Diego County who is able to prescribe the cocktail of drugs for the patient. These drugs are delivered at any time, day or night, under lock and key. The patient is responsible for handling the delivery, mixing the drugs (with water, juice… maybe a cold beer?) and ingesting independently. Also, the individual is not mandated to use the drug; if they decided they wanted to wait, the pharmacy will properly dispose of the drug.
Again, this discussion was taking place in December of 2020. We agreed that the discussion would qualify as our first verbal discussion regarding aid-in-dying, needing to revisit the topic 15 days from that point. After doc left the room, I was shaken, terrified really. I was afraid to go to sleep that night in fear that I wouldn’t wake up. Although my physical body needed the rest, my mind wouldn’t allow it, my goal was to get out of the hospital and see my family and friends again- no way I was dying in there during that stint. I figured, if you can keep staying awake, no way you can die. As I lay in the hospital bed that long night, I reflected on my current situation and how I got to that point. I remember the molecular profile, and the stupid OS stat. 30.2 months- my 33rd birthday. I lay in that hospital bed hoping that I would have the chance to revisit the aid-in-dying discussion 6 months from that point- again, my 33rd birthday.
Dying from cancer is a brutal way to go. A patient reaches a point in which it’s simply suffering. Why should we allow an individual to struggle and suffer for so long when the only outcome is death? It may sound goofy, but I often think of Dora. She was so sick at the end of her life, ironically with a brain tumor. The best gift I gave Dora was a way out and relief from the pain she experienced on the daily. After this experience, I feel that and individual who is terminally ill should have that choice.
Yet here we are people, today is my 33rd birthday! I feel relieved and feel as if I’ve been released from this contract of death. Back in 2018, the molecular profile told me that most people in my situation had 30 months to live. 6 months ago in the hospital that idea was reinforced. At the time, I felt as if I signed my life away, and no matter what I did, it’d all be over in 6 months.
I get it too, it’s silly to correlate my signature on a piece of paper with absolute death; but it stays in your head and comes to the surface time and again. My antidote for those thoughts and anxiety were to go back to the basics: one day at a time, enjoy the good days and power through the bad. Keep smilin’, enjoy the little things, and grind on.
So, I am thrilled to be celebrating my 33rd birthday. I’m ecstatic to be with my mom and Papa (who turned 97 just a week ago!), sister, family, and friends, and to bask in the birthday glory! I feel strong, as if I’m released from this contract of death. I understand, not a ton has changed, I’m still very sick and will succumb to this disease at some point. For now though, I’ll continue with treatments once a month, manage the disease, and enjoy the good times!
“Demand from The Universe, and let The Universe unfold”, is something a friend spoke to me once. Simple enough, yet profound in it’s meaning. I remember being a little kid, and forcing the eternal optimism outlook into my brain chemistry, always reminding myself that, “It’ll all be OK”. I feel maintaining this attitude as a youth, into adolescence, and beyond, is one of the reasons I’m still able to proactively fight this disease.
I believe we have to WILL things into our lives, force them in through the power of positive thought, repetition, and even meditation. We have to demand and expect these things; yet it isn’t easy- you will have to work for it. It won’t happen overnight and will take months, even years to shape your mind into a powerful river, flowing with positivity. Maintain optimism- don’t get too high, and don’t get too low. Using the lows as a learning opportunity is the most valuable experience you can gain in this world- remember the feeling, remember the pain, how much it hurts and stings the body and soul. Use the memory of the pain and defeat to drive yourself to get stronger and be better. And always, no matter what, leave it all out there. If you can walk away from the situation knowing you did everything within your power to create a positive outcome, even if you come up short, you can walk away with pride.
The Universe is a strange place, but I take comfort knowing this is all unfolding with a purpose. This disease sucks, there is no doubt; but with this disease comes opportunity. Opportunity to meet new people, positively influence others, rekindle old relationships, the opportunity to push the boundaries of my physical and mental characteristics, and the opportunity to be involved in modern medicine- ideally sacrificing for the good and to gain more knowledge regarding the disease. Years ago, I was given a death sentence which was hammered back into my head 6 months earlier. Forget the data and stats though and always remember that none of this is a given. There are no guarantees. Each day is a gift. Ride the wave, believe in the good, and be the good.
Today was a day to celebrate! Thank you for being with me during this journey and please know you’ve all played a massive role in this process, coming in and out of my life at the perfect moments. Here’s to 33!
Best,
TCK
