Caring Bridge Journal Entries
“Here’s What’s Up”
Journal Entry by David Hicks — May 19, 2019
I'm starting this page now in the hope that, come July, I'll feel a bit embarrassed for having started a blog for a very scary incident that resolved in a short period of time. But this road might be long, so I want to get started sharing now.
The Gist
I was diagnosed with colon cancer this past Friday morning. It didn't even cross my mind that that could be a possibility until Wednesday (5/15), when I had a colonoscopy to check on some digestive issues I've been having over the past semester. My GI doctor thought I had ulcerative colitis and wanted to confirm before putting me on prescription medication. But then they found a big ole' tumor (6cm), and life has felt very upside down since then.
The tumor will be removed next Wednesday, May 22 at Beth Israel hospital in Boston. I'm told they have a great practice for these sort of operations (one of the many, many things I am grateful for here is being based in a city with world-class healthcare). I'll need to stay in the hospital for 2-4 days after the operation. Then I'll be in Boston for another week before a follow-up appointment.
As the news has started to be shared, I have been overwhelmed - in the absolute best way possible - by the outpouring of support. I feel extremely covered by my communities and am so appreciative of every message I'm receiving. I am also extremely tired and slowing down as the adrenaline wears off. Please, if I am slow or forget to respond to any note you might send, take no offense. Your words are seen, and they're comforting.
What stage is the cancer?
They've ruled out Stage IV, because they didn't find evidence of it outside my colon. It could still be Stage I-III. (III would suck the most; I the least.) If it's Stage III, I'm getting chemotherapy. If it's Stage II, I probably am, but it's a conversation. Stage I, no chemo. They'll know the stage seven days (at most) after the operation.
Where am I emotionally/spiritually?
Many of you know my Christian faith is important to me. I'm so glad I have that to lean on right now in particular: it feels very robust and unshaken.
I'm told many people feel anger in times like these, asking questions like "Why me?" At this point, I don't feel that way at all. In fact, the question I've been asking myself is "Why not me?" This disease is extremely rare for someone my age. (The surgeon said that, of the 360+ colon cancer cases he deals with each year, maybe two of them will be like mine: someone in their 20s with no family history of this stuff.) But, if it has to happen to someone, what makes me think it wouldn't/shouldn't be me? Grades, professional success, family background, economic bracket...none of it is disqualifying.
Fear is not dominating me but, when it comes, it is very intense. I think all my fears can be put in three categories: fear of the unknowns, fear of pain, fear of death. I'm facing each of these as directly as I can. They still scare me very much.
I sense I'm going to learn a lot about submission in this season. This is happening at a time when it is very tempting to assume I'm in control of my life--finishing up a successful first year at Harvard Kennedy School, preparing to start my first year at Harvard Law School. But I'm not in control, and when I feel that way I am telling myself a lie. Cancer is, for me, right now, an excellent reminder of that.
I've experienced a lot of good things when I've been willing to let go of control and trust a God who is bigger than me: freedom from anxiety and fear, extreme attentiveness to the present moment, deeper relationships with those around me. Those are some of the joys available to me if I let go and embrace the uncertainty in this season. So, I'm trying to do that.
Buckling up,
Dave
“And Now we Wait!”
Journal Entry by David Hicks — May 26, 2019
The surgery went very well. So far my recovery has been fast--I was supposed to be hospitalized for 2-4 days, but the surgeon gave me permission to leave after 24 hours. I left the hospital on Friday morning and have started recovery on Boston's North Shore, where I'm hoping to stay until Tuesday. I'll go back to my apartment in Cambridge on Tuesday evening and continue recovering until Friday, by which time I'll:
Have received a phone call telling me which stage the cancer is,
Meet with an oncologist to discuss chemotherapy (we will cancel this meeting if the cancer is Stage I), and
Have a follow-up meeting with the surgeon to make sure everything is healing well.
By Friday I will be able to go to my parent's home in the Philadelphia area. If chemo is needed, I'll start doing that in Philadelphia. If it's not, I'd love to take a cross-country road trip: I'm not allowed to fly, and I've wanted to see more of the U.S. anyway!
Community and dependence
The support you all have shown me is completely incredible. I don't know what I expected when I decided to share this journey publicly, but it certainly wasn't this. The kind messages, offering homes and other places to stay, supportive videos, gifts.....from people around the world, with a broad spread of religious and political convictions. It's just insane. I've seen that people respond to vulnerability with generosity and compassion. I'm going to remember that forever.
I feel like an infant in the back seat of a car, holding a toy steering wheel. For a lot of my life, I've turned my toy wheel to the left and the car has moved left. Sometimes I've turned it right and the car has gone right. But last week I saw my wheel wasn't controlling anything; I turned left, but the car went right. The way I see it, I've got only two choices: (1) scream and cry, pushing my wheel back and forth until there starts to again be some relationship between my action and the car's motion, or (2) look to the driver seat of the car, realize that someone else is holding a much bigger wheel that actually controls the car, and choose to trust that person. You can call the driver whatever you want: I call them 'God.'
The point is that I'm realizing how deeply dependent - how needy - I am, and I'm learning to be okay with that. Instead of fighting for 'independence' (the screaming and crying route....the refusal to let someone else control "my" car) I'm going to direct my energy toward making sure I'm dependent on something that is healthy and able to sustain me (to learn to trust the driver). I think that's the best way to spend my time as I wait on news that will veer my car back onto a somewhat familiar road--Stage I cancer, no chemotherapy--or push it deeper down an unfamiliar and scary-looking path.
Last thoughts
I am so tired. The adrenaline from this past week has been wearing off and now I kind of just want to crawl into a hole. I wake up with sharp ab pain in the middle of the night, and my legs are sore from the shot I need to give myself every day for the next thirty days. (Anyone who knows me well knows how darkly funny it is that I need to give myself a shot: I am horrible with needles. You're looking at the kid who passed out twice during high school health class. I can't stand blood, and even thinking about hospitals makes me queasy. This whole thing--especially the daily shots I need to give myself in the leg--is some serious immersion therapy.)
Laughing also causes serious pain, which sucks because I laugh a lot. There have been several times over the last few days where some comment from a friend, or random thought which crossed my mind, has cracked me up, and I spend the next few minutes rolling around on the bed, squeezing a pillow to my chest to manage the pain while I laugh and cry intermittently. It's a pathetic sight!
Finally: When I've heard people express gratitude while going through hard times, I've been really skeptical. It seemed like they were being dishonest about how they were really feeling. But I've felt a lot of gratitude through this process, for all sorts of different things. I'll list more later but, for now, here's two: (1) I have an amazing support network through my family and friends, and (2) I have good health insurance that has given me space to focus all my energy on physical/emotional/spiritual growth and healing, instead of needing to worry about bankruptcy and other financial burdens that come with incidents like these.
With gratitude,
Dave
“Here Comes Chemo”
Journal Entry by David Hicks — June 1, 2019
I have Stage IIIC colon cancer. My surgeon and an oncologist sat me down this Wednesday and, over the course of a two-hour meeting, explained exactly what that means for me. Here's the summary:
I'm going to need six months of chemotherapy, starting in late June/early July. In one month I'm having another (minor) surgery to install a port near my collarbone--all of my chemo injections will go through that port. I can't have that surgery until my incision from last Wednesday's surgery has healed.
There will be 12 rounds of chemo in total: every two weeks, I will go to the hospital and sit in a chair for 3-4 hours while they infuse me with some magical cancer-fighting juice (my words, not theirs). I'll leave those visits with a portable infusion tank--about the size of a water bottle--which will keep infusing me for two days while I go about my daily life. After two days the tube will be detached and I'll have a week and a half to recover. Then we do it again.
While I'm on chemo, my immune system will be extremely weak. If I get the flu, it could have some serious side effects (like blindness, which really scares me). I need to get a flu shot, as does everyone I spend time around, and be extremely attentive to my health. (I'm not a hypochondriac, but the potential, permanent side effects of a cold/flu scare me very much, so please understand where that's coming from if I seem a bit neurotic about cleanliness for the next several months.)
My oncologist is "very confident" I will be able to stick with my original plan of attending law school this fall. When he told me that, I felt so energized. I love a challenge, and the idea of having something to work at while going through chemo gets me excited. But I realize I need to be especially in tune with my body right now and that taking on undue stress might not be the wisest thing. I'm going to play it by ear: my case worker at Harvard tells me I won't need to make a decision until July, at which time I'll have done a round or two of chemo and have a better idea of how my body responds.
Those are the facts. Now, the feels...
I'm tired and irritable
The last two weeks have been acutely intense as we've been trying to figure out what my body is doing to itself. So I left the meeting on Wednesday with a sense of release: we now have the requisite clarity to move forward into treatment. I don't like what I've been told at all. It scares me. But now, at least, we know enough to start fighting it.
The last three days have been very hard. I'm fluctuating between total apathy and extreme irritability. (Doesn't that asshole who just cut me off in traffic realize what I'm going through? Is it really so hard for the hospital to call me if they need to cancel an appointment, rather than telling me only after I've showed up?!) Not proud of these feelings, but they're there. It's on me to (1) give myself some grace...I'm going through a lot, while also (2) continuing to try to take the high road. In my mind, 'winning the battle' with cancer means far more than just surviving: it means getting through with strengthened character and wisdom. If I spend too much time watering the weeds instead of the flowers--indulge my worst impulses instead of my better ones--then I'll have lost.
I'm feeling intense fatigue, which doesn't help with any of this. It feels like all of the exhaustion from the last two weeks has caught up to me; I honestly don't think I've felt this tired in my life. I want so badly to set two days aside, turn off all my technology, and sleep it out. But I can't do that because I need to have my phone on for calls from the hospital. (If cancer doesn't kill me, the paperwork might.) Because I'm now in the Philadelphia area for the summer--but will (hopefully) be returning to Boston in the fall--we're needing to coordinate care between several hospitals. So, I'm getting tons of phone calls from new doctors and caregivers, all of whom have urgent questions I need to deal with. I'm glad they're on top of it and here to care for me! But coordinating everything feels like an extremely exhausting full-time job.
Information and control
I've been connected with so many great resources to educate myself about this disease and connect with others going through similar experiences. But, in many of these groups, I've noticed an obsession with information that I find kind of off-putting.
An example: I sent a Facebook message to the founder of one of these support groups asking if she could suggest some questions for me to ask my oncologist at our first meeting. She (very graciously) responded with a long list, put together by members of this community, of extremely detailed questions which all of us must "KNOW EVEN BEFORE OUR FIRST APPOINTMENT WITH OUR ONCOLOGIST." The list included questions which, to me, seemed over the top in their quest for detail. (Question 7 suggested I ask about "BRAF non-V600E, which have much better prognosis and do respond to EGFR antibodies.")
I've ordered my fair share of cancer-related books since this whole ordeal started; I'm not anti-learning. But in many of these groups I'm seeing an intense focus on education and information acquisition which reflects, I think, a craving for control. In a very hard circumstance that seems otherwise uncontrollable, it's nice to think that arming yourself with questions about BRAF non-V600E is one way you can help yourself heal. (And maybe it does help! Nothing wrong with being an educated patient.) But, in the midst of trauma, it seems to me that many people start seeing information as salvation rather than support.
Information won't save me here. In previous posts I've shared my thoughts on the benefits that come when we embrace uncertainty and are willing to give up our need for control: I'm trying to frame my battle with cancer as a battle to stay that course.
“Part II”
Journal Entry by David Hicks — January 28, 2020
The cancer has come back, this time in my liver. A doctor told me three hours ago. My emotions are all over the place: I'm shocked, angry, scared and sad, all interspersed with twinges of optimism.
Here's some background:
I finished my 12th and final round of chemo for colon cancer over this winter break, on December 27. I was extremely excited to get back and start this spring semester fresh.
On January 13, when I returned to Cambridge, I had a follow-up appointment with my doctor. She took a CT scan, which was going to be used as the starting point for post-cancer monitoring. But that scan revealed a small mass on my liver. So for the last two weeks we've been doing more tests (an MRI and a biopsy) to figure out whether it was cancerous or not. Turns out, it is.
The cancer they found on my liver is technically still colon cancer, which has spread to my liver--it's not classified as liver cancer. That matters because colon cancer is more curable than liver cancer. But it's scary because this tumor grew while I was receiving chemotherapy specifically for colon cancer. My doctor says that when she sees cases of colon cancer returning, it usually happens 1-2 years after finishing chemo; mine has come back in less than a month. That, to me, is scary as hell.
Here's what's next:
All my treatment is being moved to Dana Farber hospital. I'll meet with a surgeon there at some point over the next week.
Within the next few weeks I'll be having liver surgery to remove this tumor. After I recover, we should be able to determine next steps. It sounds likely that I'll need to start again with chemotherapy.
I plan to continue with law school as long as I'm physically able. My health comes first, but last semester having a challenge and something to work toward really was helpful to me; I'd like to do the same again now, if possible.
And here's what I'm feeling:
Thoroughly exhausted. I am still recovering from the side effects from my "last" round of chemotherapy. This all feels like deja vu and, while I'm prepared to start this fight again, at this moment I just feel like throwing my hands in the air and giving up. I won't...but right now I want to.
I want my time back. When Harvard accepted me, I was most excited for all of the opportunities I could take advantage of at this school--trips, cool summer internships, interesting extracurriculars. And I feel like I'm watching all of that blow past me. I was just about to accept a summer internship which I was very excited about in D.C., which I now will have to decline so I can stay here in Boston. It's petty and silly to be upset about in the grand scheme of things, but it still makes me sad/mad.
Faith-wise, unshaken. I believe there is a God, who is good, and who has a plan here. I've believed that in easy and hard times. I don't believe it's possible to know what the plan is, nor do I believe that all of this pain I'm feeling in any way undermines God's goodness. I'm continuing to hold onto the analogy I laid out in one of my previous posts: I'm a kid in the backseat of the car, recognizing I've been holding a toy steering wheel and that I'm not actually in control of this "vehicle" in the way I thought I was. Trying to trust the driver, even though I'm pretty mad at Him/Her/Them right now.
I don't understand this at all. But, fortunately, I don't feel like I need to. I need to focus on each next step and guard my mind from wandering into "what ifs." That's much easier said than done--and it makes me look a whole lot braver in writing than I feel in reality--but it is where I will try to focus my energy.
“Round 3”
Journal Entry by David Hicks — April 29, 2020
EDIT: The livestream I mention below went very well. I've made it public on my Facebook page, so you should be able to watch it here.
For the last few months, all was quiet on the cancer front. Recovery was smooth since my liver surgery on February 7. I made some dietary changes--no more alcohol, no more red meat. Otherwise, everything felt good and nice.
But yesterday, at my first follow up scan since the surgery, I got bad news again. There is another tumor on my liver. And there might be one on my lung (still to be determined). I need to start chemotherapy again, likely within the next two weeks. And this time we are using a drug that is more intense than the previous one. (And, in case you're not aware, there's a pandemic.) I'm told to expect some pretty rough side effects. In the best case scenario, it looks like I'll finish chemo by this Christmas.
Right now, here is what is hitting me hardest: yesterday, for the first time since I was initially diagnosed (almost exactly one year ago), my doctor's tone changed. He stopped talking about cure. In fact, he said cure no longer looks likely. It looks like everything hinges on how my body responds to this new chemo drug.
I am scared. And discouraged. And so tired. This has been the hardest year of my life and it feels like the only thing I have to show for it, at least physically, is a few scars on my chest and a whole lot of fatigue.
I also feel a lot of peace. And comfort. And clarity of mind--the kind of clarity that feels only accessible in moments like these, when everything else feels stripped away.
I want to share all of these thoughts: since this journey started, I have chosen to be as vulnerable with you all as I possibly can. I think that's important, and I feel that my vulnerability has been rewarded. That reward has come in many forms--from the vulnerability that has been shown to me in turn by many of you, by helping me feel understood as I go through an experience that is alien to many people, and by giving me space to clarify my own thinking.
I don't have the energy to write all my thoughts down at this moment. But I do have the energy to say them. So, I'm trying something new this time: this Saturday, at 11:00am EST, I'll be on Facebook Live to share what's on my mind and heart. (I'll download the video and post a private Youtube link on this blog later, so no worries if you don't have Facebook. That place may or may not be evil anyway, yet unclear to me.)
If the idea of watching a young guy talk about the implications of his third cancer diagnosis (during a global pandemic!) strikes you as possibly one of the most depressing ways you could pass some time on a Saturday, I hope you finish the video feeling differently. I am in a place of deep pain and deep peace. And I have many, many reasons for hope. I want to talk about it all.
Hope to see you Saturday.
“This Week”
Journal Entry by David Hicks — July 20, 2020
Quick note up front: This update is all facts, no feels. But remaining open about the journey my heart and mind is on is so important to me. To that end, I will share how I am feeling and what I've been thinking about during another Facebook Live session this Saturday, July 25 at 11am EST. (I will update this page with a link on Saturday morning.)
The last one was so special. I'm not sure it can be recreated, but I do promise that I will again strive to be brutally honest.
Health update
This past Friday I completed my sixth round of chemotherapy. Thankfully--although the doctors braced me for this chemo to be much harder on my body than the previous drugs--I tolerated all six rounds very well. That was a huge gift.
I'm now entering a particularly difficult week. This Wednesday I will have my first CT scan to see if the chemo has been effective. This is a very important checkpoint: it's the first time we will have any information on whether chemo can effectively fight this cancer. Medically speaking, there is a lot riding on the success of this scan. ("Success" would mean finding that the tumor on my liver has shrunk or disappeared.) If the chemo has not been successful, traditional medicine has no more to offer in terms of cure.
My doctor will call me with the results of the scan on Thursday afternoon and then, if the chemo has done its job, will meet with a surgeon on Friday morning to prepare for a liver operation.
Specific prayer request
For those of you who have been praying with me, I'd like it if you could join me in asking for something specific: that this Wednesday scan would reveal all evidence of cancer completely gone in my body. This would be scientifically unexplainable and far exceed all of my doctors' expectations.
I am not used to praying this boldly, but I have had some truly amazing experiences over the past month that have left me feeling convicted that this is what I should be asking. (I'll talk more about those experiences in the Facebook Live session.)
A sincere and huge thank you to everyone who has been sending me notes and letters over these past few months. I have responded to almost none of them (I just don't have the energy) but they have all been received and extremely meaningful to me. I keep a big box of these notes and read through them when I am in my valleys. Especially amidst quarantine, I really treasure those reminders that I am remembered and cared for during this hard time.
“At the Edge?”
Journal Entry by David Hicks — October 25, 2020
The Facts
Last Tuesday night I had my first scan since we paused my chemotherapy treatments 10 weeks ago (so that my body could prepare and then recover from surgery). The goal of the scan was to examine my lungs: in the last few scans my doctors had noticed very small marks on my lungs, and were conflicted over whether these marks were tumors or not. 10 weeks of no chemo would help clarify things: all doctors agreed that if the tumors grew, we would know the sites were cancerous and could then remove them with radiation or surgery.
Tuesday's scan showed that the cancer had indeed spread to my lungs. The marks grew. Not only that, but six new tumors have appeared on my lungs as well. There are too many tumors to radiate or remove with surgery. This means they will stay on my lungs. Modern medicine has no cure.
The goal of my treatment has now totally shifted: for the past year and a half, we have been trying to cure this by removing all the cancer in my body; now, we are trying to slow the rate at which it overtakes me. What was a sprint is now a marathon. As my doctors explain it, modern medicine can keep me alive only if (1) we can use chemotherapy/surgery/radiation to slow the growth and remove tumors that are especially likely to kill me, up until (2) medicine advances enough to identify a curative treatment.
I have been given no estimate about how long I am likely to live, and--even if one was available--I'm not sure I would want to know. There are clinical trials available that I now qualify for, and apparently some have had pretty good success with people in my situation (i.e. young folks with advanced colon cancer). Also, the tumors on my lungs are all very small right now (each smaller than a sesame seed) so they pose no imminent risk to my life. I will have another scan in two months to see how much they have grown--once we know the growth rate, I imagine it will be easier to project the trajectory of the next several months/years.
The Feels
I wasn't prepared for how unbelievably hard this week was. I am just overwhelmed by the darkness around me right now. In this week alone, my car was towed (first time that's happened), I learned that both my graduate programs will be online again through the spring, and I was told I will in all likelihood die from cancer. One of my doctors described me as being in an "emotional wood chipper" and the image felt spot on. I'm at that point where the only thing you can do is weep, laugh, repeat. It's all just so absurd.
God feels like a ruthless monster. I believe He exists and is in this somewhere...but that's about it. The things I have been taught and personally believed to be true of God--that He's loving, compassionate, etc.--feel like cute sentiments that are totally void of evidence right now. Against all present evidence, I am deciding to continue to believe that they are true. I'm not sure why I'm doing that. Desperation? I don't know. But there is a certain grace in the fact that the present darkness isn't yet thick enough to block out my memory of past light. I can recall--vividly, still--moments where faith in God and His character made a lot of sense to me. I'm clinging to those.
At the beginning of 2020, when the cancer first recurred, I spent a lot of time in quiet. Reading, journaling, thinking, praying. The one thought that came to me over and over again was, "I am going to be taken right to the edge, but this cancer won't kill me." Over this year, that statement has taken root in my spirit. (A secular pessimist could frame that thought as a predictable coping mechanism for someone facing a traumatic situation. Maybe. But I'm a spiritual optimist and am choosing to believe there is something that is true yet transcends understanding in that statement.) Each time I've received more bad news, my quiet moments have been spent asking "Is this is the edge?"
So: Is this the edge? I don't know. It sure felt like it on Wednesday, when I got the scan results, hung up the Zoom call with my doctor, and sat with my parents, weeping and repeating "This is too much."
But as the last few days have passed, I'm not so sure. Things can get worse--I feel like I'm standing right near 'the edge', looking down into an abyss that represents death....but my feet could still move a few inches closer before I fall. As I now start exploring clinical trials and alternative/integrative medicine, I can imagine many more bad days ahead. But I am going to continue assenting to my sense that this story does not end in death. (If it does, you can call me a fool--but joke's on you, because I'll be dead and won't give a damn!)
Request for Help
I have been overwhelmed by the kindness so many of you have shown me for nearly two years now. Getting cancer is highly inadvisable but, for me, one of the major upsides has been experiencing new relational depths with the ever-expanding group of people around me. You all are shepherding me through something very hard. I am so grateful.
I'm still fighting, and I could use your help:
1) Integrative/alternative medicine: Western medicine has nothing for me here, so I'm expanding my scope. I've started researching alternate approaches--my doctors have suggested I look into traditional Chinese medicine--and would be very curious to know about any doctors/centers/programs you know of that might be able to help me here. If you have any recommendations, could you please email them to me (davidcameronhicks@gmail.com)?
2) Clinical trials: I was encouraged to learn that there are several clinical trials I might now qualify for. When the time comes for me to decide which trials to participate in, I would appreciate the support of people who have medical expertise to help me discern the right path.
3) Prayer: There are so many major decisions I will need to make in the coming months. When it comes to alternative medicine--how do I decide the best path? How do I choose which clinical trials to join? Do I continue finishing my graduate degrees, or do I take a leave of absence? Do I continue living with my parents through the spring semester, or do I move back to Boston to be closer to many of my friends? What's the appropriate balance between fighting and resting? Lots of questions are rolling around my mind and I would appreciate prayers for discernment as I start making decisions.
Thank you, everyone.
“Taste-Testing The Alternatives”
Journal Entry by David Hicks — November 19, 2020
Today I went to PetSmart to try to purchase a drug that dog owners can give their pet if it has worms in its gut. I don't have a dog; the drug was for me. I had spent the morning combing through stories and studies of cancer patients who had acquired the drug and--in combination with other medications not being used for their designed purpose (known as "off label" use)--been cured of their disease.
Yesterday Amazon delivered an enema kit and a bag of coffee to my doorstep. The tools are for coffee enemas. Here's what you do: get yourself nice and cozy (light a candle! throw on some Marvin Gaye!), brew some coffee, let it cool a bit, pour the coffee into the enema bag, then pump it up your butt (not too fast!). Hold for ~15 minutes. Expel. The theory is that this helps your liver receive a more potent dose of coffee's beneficial properties, thereby helping the liver more effectively detoxify your body. I've spoken with several late stage cancer survivors who swear by these and believe daily coffee enemas are part of the reason they are alive today. The research on this is mixed but--in an effort to stay open minded-- I ordered the kit and coffee. Just in case.
I'm tired this week because I am now on a vegan ketogenic diet with intermittent fasting (i.e. only eating from 12 noon-6pm every day) and adapting to it has taken a lot of work. I'm also tired because I stayed up until 6am on Monday reading about cancer cell biology. Dave Hicks (last Sunday's edition) didn't know anything about angiogenesis, apoptosis, germline and somatic mutations, the function of mutant p53, mismatch repair statuses, etc.; Dave Hicks (today's edition) does.
Needless to say: My days are getting weird.
This update is unusual because I have no new information on the status of my cancer. As a reminder: I'm currently not being treated at the hospital. We are watching to see what the metastases on my lungs do in the absence of medical intervention. I'll have a scan around the holidays. Those scan results will guide our next steps.
I've become serious about exploring integrative approaches to this disease. In my last post, I asked you all to help me get started on that research--and you delivered. I received 100+ recommendations in response to that request. I am still getting multiple emails everyday from people all over the world. The support and care is absolutely overwhelming.
The alternative health world truly feels like the wild west. I'm entering into communities that are trying to use science to hack together solutions to problems doctors have deemed incurable, with varying degrees of success. There are folks who are brought to this space because they have blanket distrust of mainstream medicine (I cannot tell you how many times I have read about "Big Pharma's profit motive" as the reason a natural drug isn't being used to cure a disease); there are folks, like me, who are here because they are desperate and don't have anything to lose.
I am just barely keeping my head, because this research is accompanied by a lot of mental and emotional anguish. This person drank 64 oz of carrot juice every day and their cancer disappeared; that person did the same and it fueled their cancer's growth. This person insists conventional treatments (chemo/radiation/surgery) only strengthen your cancer's resistance to natural treatments; that person opted for low-dose chemotherapy in conjunction with natural treatments and beat stage IV cancer, twice. Everyone claims their approach is superior, and everyone has some evidence to "prove" it. Trying to turn all of this into actionable information that can guide my decisions for the day can be extremely stressful.
How I Am Thinking About Alternative Medicine
Alternative medicine can be an empowering tool or a destructive obsession. I am finding the way to best keep myself from obsession is a daily 'posture checkup' on my heart. Why am I researching this food/supplement/therapy so closely? Am I keen to learn, or am I scared to die? The line is thin but it is discernible. Fear-driven learning will always lead, I believe, to destruction. You'll eventually implode. The goal instead is to fuel my research with a love of life. To be able to say, calmly: I will do this diet/buy this supplement/try this therapy because there is evidence it could help me enjoy this life for a bit longer. I often catch my thoughts tipping toward the urgent: I will probably die unless I do this thing, so I must start doing this thing now! This is toxic thinking. To me, it's a sign of the cancer mentally metastasizing; and it ultimately works against my goal of eliminating all metastases, whether physical, mental, or spiritual. Life is to be celebrated; death is not to be feared. (Far easier said than done, but that doesn't make it less true.)
I do believe that elements of many of the alternative approaches I am studying will one day be part of mainstream cancer care. The goal of my game, then, is to try to get ahead of the curve--use myself as a guinea pig; take some calculated, evidence-based risks; and see what happens. What do I have to lose? It is scary (and darkly comical) to imagine myself dying not from cancer, but by overdosing on a canine deworming pill or pushing the wrong type of coffee up my butt (Starbucks' Pike Roast?). Calculating these risks and weighing them against the risks of inaction is a very big task. Often, action seems preferable.
The way I approach my religious faith is surprisingly transferable to the way I am thinking about these alternative approaches. Having a rational, evidence-backed basis upon which to ground my faith has always been important to me: I was an atheist for several years because I thought Christianity lacked this, and I only began seriously re-exploring the faith after spending quite a bit of time examining the historical evidence. All decisions impacting my health will require a similar rational, evidence-backed basis.
But rationalism often claims for itself more ground than is reasonable. We put far too much stock in our rational minds, whereas I think we would be better off aspiring to lives that are transrational: firmly tethered by reason, but never blindly led or bound by it. What's that mean in practice? It means shutting up more often. Learning to listen and discern the voice of the divine/God/etc. Learning how to interrogate Silence. And then taking what you hear in those transcendent moments and translating them into actions and decisions that are concrete and rational. I could write a whole essay on this, but I'll spare you that for now--my point is, this is how I think of my faith, and it is how I am trying to think through these health decisions. Learning as much as I can, then shutting up, listening/discerning, and moving forward in a way that is concrete and, yes, in its own way, rational. Neither traditional nor alternative medicine have full claim to this space. I am trying to learn how to move between the two with discernment at each point of decision.
That's all for tonight. With the weather getting colder, the evenings getting darker, the loneliness getting thicker, and my health becoming more time-consuming, I wrote this in an effort to get outside myself for a bit. It's helped! Everyone has gotta find their therapy, I suppose. Writing's mine.
Yours,
Dave
“New Tumor and Leave of Absence”
Journal Entry by David Hicks — March 18, 2021
I've been receiving a lot of really kind texts and messages from friends recently asking how I'm doing. I haven't responded to any of them because, each time I'm asked the question, my instinctive reaction is I don't know where to start.
My last CaringBridge post was in November. Between then and January, things were fine. Even though I was still on a very strict diet (vegan keto with intermittent fasting, plus 100+ pills each day), I was able to have a nice, festive Christmas with my family. Then I met some other young colon cancer patients and we began working to build an organization that would raise awareness about this disease. It was a good two months.
Then, in January, I was invited to a clinical trial in Boston. This was a really big deal--the trial had only been run on 24 people so far, but I knew that they were able to cure one patient who had a very similar disease as me. Of all the treatments I have received so far, my doctors all agreed that this was the most likely way for me to be cured. All I had to do was have a simple blood test to make sure I was healthy enough to participate, and then I could begin the treatments.
I had the blood test on a Monday and got a call from my doctor on a Tuesday. "I have some bad news," he said. "Your blood levels are insane. There's something really wacky going on with your liver. You're not going to be able to do this trial, and you need to go the hospital as soon as possible to get a scan and figure out what is happening."
Health update
I got the scan and learned that a new tumor had started growing in my liver. This tumor is extremely fast growing, it is inoperable, and it is obstructing my bile ducts. When your bile ducts are obstructed, bile accumulates in your liver, and you start to have symptoms like turning jaundiced (yellow), abdominal pain, nausea and vomiting.
The false hope of the trial--and news of the new liver tumor--was a knock-out blow to me. I'm aware of two reasons this news felt more unbearable than all of the other terrible news I've received. First is that the trial offered a tangible, realistic shot at a cure in a way that my other treatments and surgeries have not. To be invited to participate, and then quickly have the invitation revoked, felt like a terribly cruel joke--like God, after two years of kicking dirt in my face, paused to offer me a hand up, before pushing me back to the ground and starting all over again. The second reason this was a blow is because this tumor grew after I'd spent months of time researching (often 12+ hours per day) and executing alternative approaches to cancer. I'd been so disciplined and said 'no' to so many foods and activities that I would have loved to do but chose not to, because I thought I was making decisions that were benefitting my health. The new tumor felt like my report card, and I got an 'F'.
My health has taken a dramatic downturn since January. Here's a quick summary of what's happened--and is happening--to my body:
I had two procedures to insert stents in my bile ducts. Stents would hold the ducts open against the tumor and temporarily stop the obstruction, relieving my symptoms. Both of the procedures failed. The net result was increased pain in my abdomen and a greatly increased risk that I get an infection and die of sepsis.
Fluid is accumulating in my peritoneal cavity (basically, my belly). This is called "ascites" and it absolutely sucks. Basically, when I go for a walk or exercise, my belly will start to fill with fluid and expand to a point that it is fully extended. (Like this.) If I breathe in or out, it won't move. It is really painful and the fluid compresses my lungs, which makes it hard for me to breathe and speak.
My eyes are yellow. Some days, it's just in the corners. But on others it is a very noticeable, attention-drawing yellow. Example: I went to buy sunglasses so that I could hide this symptom, and when I was checking out, the cashier was shocked and asked what I did to make my eyes so yellow. (I didn't have the heart to tell her "liver disease".)
Bizarrely--we're not even sure if this is related to the cancer--there seems to be something wrong with my hearing. When I wake up, my ears pop. I spend the day hearing everything like I'm underwater. Then near the end of the day, they'll go back to normal. This has been happening every single day for the past two months. (Dealing with this isn't the health priority right now but, as a musician and music lover, it really scares me. I don't know how long it will last, and I don't know if it's the prequel to hearing loss.)
I cannot do any really helpful treatments until we fix the bile duct obstruction problem. Last month we started a "salvage chemotherapy"--four rounds of a treatment that is not optimal, but is the only available option for me given how bad my liver levels are. This is a last-ditch effort to shrink this liver tumor, so my liver levels can return to normal and I can start some more effective treatments/clinical trials. My third round of treatment is tomorrow. Unfortunately, so far, it doesn't seem to be working.
Life update
The quick onset of all of these symptoms forced me to take a leave of absence from school. I just couldn't keep up with going to the hospital 3+ times a week alongside my course load. This was a really hard decision for me--school was my main connection to other people during COVID, and I've been keen to graduate on schedule ever since I was diagnosed--but I believe it was the right one.
So what am I doing now? Basically nothing. I'm at home, in my childhood bedroom, resting between chemo treatments and trying to keep myself from going insane.
When I took the leave of absence I thought it might give me some nice time to make calls and catch up with friends. Sadly, I quickly started finding it very hard to speak. I can get out a few words at a time, mixed in with a lot of painful coughing. This symptom is really terrible and alienating, especially during quarantine. It's made me feel lonely and disconnected from people who I really care a lot about, but just don't have the physical capacity to connect with in conversation right now.
There's so much more I could say, but I'm out of energy for now. I want to sincerely thank everyone who has been reaching out, asking how I'm doing and how they can help. It means so much. I am writing this while I'm still in a dark place and really don't want to talk with anybody. But that doesn't mean the messages aren't appreciated and reaching me, even in some small way. Thank you.