December 1, 2016
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| I escaped to the middle of the sea on 12/1/15 after finding out about cancer. Then it started to storm while I was out there. |
Believe it or not, this post marks exactly one year since the day I found out about my type 1 testicular cancer, which ultimately took my life to a completely different trajectory. To mark this milestone, I wanted to take a few moments to provide a brief update and share some thoughts I’ve had over the year.
I am doing well, first and foremost. I see a specialist doctor at the University of Tsukuba Hospital once every few months to continue my surveillance routine, which consists of periodic blood tests, X-rays and CT scans. I’ve seen the doctor twice since moving to Japan and I’m happy to share that all test results have looked great. I am scheduled for my “1 year checkup” on Friday morning and I am optimistic that the next round of tests will be just as good as my last two visits. As I’ve said before, I have to have a few more years of good results to beat this thing, but I feel like I’m winning so far.
Since the beginning I’ve considered this situation a mental battle than a physical one. Aside from the weeks after surgery and treatment, I’ve experienced very little amount of physical discomfort, aside from feeling “unbalanced”, if you know what I mean. The hardest part so far was internalizing what it actually means to be a survivor, and how I feel about it all since I was deemed “healthy”. What I experienced was serious, but physically I’ve felt completely fine; I feel like it’s a thing of the past, but I’m reminded that I’m still fairly early in my journey. It doesn’t happen as often as it used to but I have days when these contrasting thoughts consume me, especially when cancer is in the news or on social media. When I hear about others’ cancer battles, or even worse, a passing, I struggle to understand why things are the way they are for me while devastatingly awful for others.
But this experience has given me gifts as well. For instance, it has given me courage to start a completely new life. I don’t mean to sound morbid, but cancer diagnosis marked the end of life as I knew it. However, getting the news that my prognosis was in a favorable place after treatment marked a rebirth, and that happened to take place as an opportunity to work in Japan for a mission I felt passionate for came to me. Leaving my previous job and a community I love and starting a new life in Japan was tremendously difficult, but the decision came to me the moment the doctor told me, and I paraphrase, “cancer doesn’t have to control your life; you do.”
Cancer also made me realize the importance of perspective. Naturally, we all want things to be better, our lives happier, and our futures brighter. That goes without saying. Obviously, if we had complete control of our lives no one would ever choose to be sick, sad, or unsuccessful. But I believe that embracing adversities is critical in order to appreciate the good times when they come. I found a quote that captures this completely:
"Happiness needs sadness.
Success needs failure.
Benevolence needs evil.
Love needs hatred.
Victory needs defeat.
Pleasure needs pain.
You must experience and accept the extremes. Because if the contrast is lost, you lose appreciation; and when you lose appreciation, you lose the value of everything." -Philippos
It was a difficult year; but I am grateful.
With that, I hope you are all in good health and happiness. If you are facing hardships of any kind, I hope you know that you are on the right path.
With Love,
Louie
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April 18, 2016
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| Last wave in Monterey Bay, gliding to my new life chapter. |
I'm hoping this will be the last #RouieTCjourney update for a while. Until a couple weeks ago I was concerned about how my blood tumor marker levels were slightly increasing over the course of three months. I was referred to a specialist at Stanford Cancer Center two weeks ago to get a consultation from a urological oncologist, Dr. Sandy Srinivas.
Before seeing Dr. Srinivas, I was first seen by her oncology fellow, Dr. Sumit Shah. He and I talked for a bit, and before I explained the same story I have been telling dozens of times throughout the past five months, Dr. Shah recited my ENTIRE cancer history to me (starting with the punch that started it all -- if you don't know what I'm talking about follow my #RouieTCjourney hashtag to see the previous updates) as if he had been on this journey with me all along . He was 100% accurate, including the date of all the procedures I've done. I was blown away. I don't care if it's normal protocol, hearing someone else tell me my own journey -- in great accuracy -- was really comforting and quieted the anxiety I've had about all this. He drew images and figures on a blank paper as he explained everything about the types of testicular cancer, staging, possible prognoses, treatments. Perfect for this visual learner. After all that, he sincerely explained to me that he is very confident that my prognosis looks very good.
Dr. Srinivas then came in, as if on cue, and offered her own thoughts about my favorable prognosis. She reassured me that 99% of patients in the past 15 years worth of data that showed these kinds of slight increase/fluctuations in blood tumor marker levels after similar diagnosis/treatment was completely fine. I was told I am looking at a 4% recurrence rate, and from this point forward I am on a strictly surveillance treatment plan: blood test every 6 months and CT scan once every year. She also invited me to join a 20 year clinical research to better understand the effectiveness of various treatments for testicular cancer.
I can't begin to describe how I felt as I walked away from Stanford. I felt like huge weights were lifted from my shoulders. I felt like my immediate future looked brighter. Although it's years too early to be considered "cured", I felt like I won a major battle that I knew I had it in me to beat, but, to be honest, I had no idea if a win was possible at certain points. But I'm taking the W on this one and moving forward with my life!
What I'm about to share next will sound crazy and completely from left field, but bear with me: after long and thoughtful consideration, I have decided to take this newly found optimism to embark on a new chapter of my life. I accepted a position as the Japan Program Outreach Coordinator for a Portland based nonprofit organization called Ocean Outcomes (O2). O2's mission is to work with fishing communities and fisheries industry to increase sustainability in high risk fisheries, and, for my new position, I will be moving to Tokyo.... next month. The topic of sustainable seafood is one that I feel deeply and personally connected to. I am ecstatic to be joining this great cause while having the chance to further explore my own Japanese identity and the birth-country of my parents and relatives.
This does mean that I will be departing from my RISE family and CSUMB/ Monterey Bay, place I called home for the past 12 years. My last day with RISE is this coming Friday, and I am devastated about saying goodbye. But, I know in my heart that this decision is 100% the right decision for me. I'm hoping to give one last lesson to my students this week; a lesson about never giving up when facing adversity and grasping opportunities no matter how much the uncertainty scares them. They will see me shed some tears, but I'm proud to show my honest emotions because that's how much being a mentor has meant to me.
The next month will be very crazy. After my last week with RISE, I will be driving to LA to drop off my life belongings to my parents' for storage. (Everything I own takes up ~2/3 of my car space, which is kinda cool.) The following week, I will be flying to Hawaii for a few days to attend an O2 conference and meet the entire O2 team. After that week I'll return to LA for a couple weeks to finalize my relocation and spend time with my family. Once I move I know I will face obstacles and challenges, even fleeting thoughts of "what the hell did I do??"; but if there's anything cancer taught me, it's that as long as you take things day by day and stay true to yourself, it'll all be OK.
I've reached typing fatigue so I'll end it there for today. I'm filled with mixed emotions but at the end of the day, I'm very optimistic about my future, which is something I wasn't able to say all these months. Putting my vulnerability out in the open like this since the beginning has not been easy, but I'm so glad I did because I felt your support every single day and that was what I needed to keep my fighting spirit up. So, again, for the umpteenth time, THANK YOU. I really couldn't have reached this point with out you.
What else can I say... #RouieOut.
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March 10, 2016
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| I tried float therapy to sort things out. Nothing was solved but I fell asleep without falling asleep in there. |
A quick clarification/reflection on the yesterday's #RouieTCjourney update:
I've learned a lot about cancer in the past 3 months but I want to stress that I'm no expert and you should take what I say/type with a pinch of salt. I'm the type of person that will dive deeply into subjects/topics I'm interested about (or forced to be interested about, in this case..) and explore it from all angles; but, in doing so, I may get a little carried away. I try to be as accurate as I can with what I share and mindful of what's appropriate to share publicly; however, I also realize that my knowledge about this whole thing is paper thin. I've been sharing what I've been learning and what I think is good to share primarily because it helps me, myself, and I understand and process everything much better. Public awareness is secondary to that. But I also worry that I'm over-sharing and unnecessarily over-concerning people with speculations because I'm trying to sort things out in a public setting? Am I the guy that's standing on a soap box preaching or am I the dude in the corner mumbling loudly to himself in public?
Anyway, I won't stop updating but I just had to get that off my chest.
Thanks for all your messages. Not a single one goes unnoticed
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March 9, 2016
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| Fluctuating test results for Alpha-Fetoprotein (AFP) levels drove me crazy. |
How's it going? It's about that time for another update, since I had an appointment with my urologist this morning and have some things I'd like to share. Before that, let me briefly summarize my past month since receiving chemo treatment.
I went in to City of Hope South Pasadena on Wednesday, Feb 3rd to receive one cycle of carboplatin chemotherapy treatment. It may differ somewhat depending on the type of chemotherapy, but a cycle of chemotherapy looks like this: go in and get hooked up with the medicine via IV for a few hours, go home the same day, and recover for two weeks. (Some types of chemo may require additional medication during the two week recovery period). That's one cycle. Those with more serious cancer will repeat those cycles over and over again for months/years. My treatment only took 1.5 hours; the first hour was spent receiving IV drips of normal saline and "pre-chemotherapy medicine" like anti-nausea and anti-allergy medicine. Once that was done they hooked me up to the carboplatin medicine for 30 minutes. I went home thinking, "That's it?"
I was feeling pretty normal for the first day or two, but the chemo symptoms hit me pretty hard for the rest of the first week of the recovery period. The best way to describe my symptoms was a combination of the flu, hangover, and morning sickness for 4-5 days. I started to feel considerably better around 2/10~2/11, just in time for Mickie's and my birthday. That night my family went out to one of our favorite Japanese restaurants for a birthday dinner and I was so happy I was able to eat something other than soup, apple sauce, jamba juice, and flavorless porridge. Admittedly, I went overboard and ate way too much and felt pretty miserable that night. Dumb me.
I felt like I was gradually getting better by 2/12. I was able to walk around my hometown and even took the train to meet up with a buddy for lunch. I was being really careful, walking really slowly, and drinking plenty of water (this was when it was 80+ degrees in LA...), but by the end of that day (more accurately, before I got home from my small excursion) my symptoms returned and knocked me out for another 2-3 days. It took the full 2 week recovery period for me to feel normal again. I returned back to Monterey Bay and work on the last week of February and have been diligently catching up on "normal life" since then.
Fast forward to today: this morning I had my follow up visit with my urologist to go over the results of the blood test that I had done 2 weeks ago. As explained a few updates ago, I get these blood tests done periodically so the doctors can monitor tumor marker levels in my blood. The results of the last three blood tests since my surgery in early Dec show a slight but consistent increase in one of those tumor marker levels, alpha-fetoprotetin (AFP): my 12/4 test showed AFP levels of 3.7 ng/mL, 12/17 test, 4.1 ng/mL, and 2/23 test showed 4.7ng/mL; tumor marker levels that are considered abnormal, according to my doc, is >6.1ng/mL (although, I've seen >9ng/mL on another source). The levels are still below the number that raises concern, and the doctor mentioned that the changes are within the margin of error; however, the fact that the number has been increasing, however slightly, in three consecutive blood tests cannot be ignored. The reason for this, I gathered in my readings, is because pure seminoma testicular cancer (which is what I was diagnosed with) usually shouldn't show an increase in AFP levels. Everything I've read points at the possibility (and I really can't stress that word enough at this moment) of a nonseminomatous component that was not originally detected by biopsy during surgery. Nonseminoma is the other type of testicular cancer that tends to grow and spread faster than seminoma (seminoma is considered "typical", "common" testicular cancer). Patients with Stage 1 nonseminoma may undergo a procedure called nerve-sparing retroperitoneal lymph node dissection (RPLND), which is an operation to remove and dissect abdominal lymph nodes that act as "checkpoints" for the cancer cells to spread elsewhere in the body so doctors can assess if the cancer cells are spreading/growing, also known as metastasizing. Crazy stuff; but, again, "Possibility".
My urologist recommended me to consult my oncologists to see what their analysis of the AFP levels are, which I will get done next Tuesday afternoon in Salinas, and also down at City of Hope South Pasadena on Friday, 3/25. After their consultation, we will talk about my best plan moving forward.
So, that's it for now. Not really good or bad news, just neutral, I guess. On a positive note, I've started going to the gym to work out 3-4 times a week, which is more than I've ever done, even during my time as an athlete. Physically, I'm seeing signs of getting stronger so that's been fun. See, cancer isn't all bad.
Thanks for reading.
With Love,
Louie
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February 11, 2016
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| A big, happy 30th birthday message from the universe. |
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February 2, 2016
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| Chemo in process. Treatment itself wasn't bad at all, it was the 2 weeks recovery period after that was terrible. |
After countless phone calls, forms, faxes (really? in 2016?), and plenty of waiting, I finally have something worth updating everyone about. Tomorrow, (Wednesday, 2/3) afternoon, I will be going into South Pasadena City of Hope for my chemo treatment. Apparently the entire process will only take about 1.5 hours and, unless I have symptoms that require attention from the doctor, that'll be the only time I go in. After the treatment I will spend another 2 weeks recuperating at my South Pasadena home. Then, I should be back to living a "normal" life. We'll see what that actually means, but I'm so ready to move on from this chapter of my life.
I'm gonna keep this update short, but I want to end it on saying thank you to everyone for the texts, calls, emails, messages, 'likes', comments, chats, and just keeping my wellbeing in your mind throughout this journey. Thanks to you all, I am able to take these next steps with zero worry, concern, or fear. And, of course, thank you to my family for filling my soul (and belly) with so much warmth and love
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January 7, 2016
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| My Wish List Foundation: giving children cancer patients something to smile about, and me a hat with my first initial. |
It's been a while since I've updated you all on my TC journey. I'm currently very conflicted on how I want to move forward with my long-term treatment, and I'd really appreciate any insight if you or someone you know have experienced something similar. Since it's a sensitive topic please feel free to direct message me instead of commenting on this post. Of course, if you feel comfortable, please feel free to comment away. It's all for awareness.
Before I explain my treatment options, here is my current status:
As I explained in my previous update on Dec 15, I was originally told that, for the next few years, I will have to get CT scans and blood tests done every few months for up to 5 years to monitor my tumor marker levels and any signs of growth, especially in my lymph nodes. This is the "Surveillance" option.
During my appointment with the oncologist this week, she raised another option: "Adjuvent Therapy". What this option will entail is that I undergo one-time chemotherapy treatment (drug: Carboplatin).
I know what you're thinking. Chemotherapy sounds f---ing terrifying. I completely agree. It will be terrible: nausea, fatigue, risk of infertility, and inherent risks from the actual treatment itself. Obviously I don't want any of that. BUT, what I also don't want is to constantly live in fear for years and years, constantly on-edge at each CT scan/blood test, because there's a chance that it will return -- recurrence rate for this kind of cancer is ~20%. (It's worth noting that the cure rate for recurrence is 98~99%). I already don't deal with stress very well; it's already extremely exhausting envisioning that lifestyle. I've been reading tons of research papers and journal articles about both options these past few days, and there is no definitive consensus on which one is "better". It's wait and see and hope vs deal with it aggressively. The Adjuvent Therapy route will reduce recurrence rate (< 5%), but there are risks, as described above...
If I choose chemo, it's recommended that it be done 4-6 weeks after the orchiectomy surgery. It's been a little over 4 weeks, so I have the next ~2 weeks to decide. If I decide on Adjuvent Therapy route, I have spoken to my family about temporarily returning to my LA home during the treatment, which is comforting. I have an appointment with my urologist next Tuesday so I am hoping to pick his brain about the options with him as well.
All things considered, I am still in good spirits. I won't lie, there's a part of me that's still coming to terms with all of this, and also slightly uncomfortable sharing all this so publicly, but I can't tell you enough how empowering it is to feel your support. It's a sad reality, but there are so many people in all of our lives, whether we know it or not, that have dealt with/continue to deal with cancer. Incredibly, however, every single person that I've personally talked to and shared each others' stories with are some of the strongest, most passionate people I know, hands down. I'm working really hard to be like that.
I also want to take a quick moment to share with you all an incredible nonprofit organization that I became aware about couple weeks ago. It's called My Wish List Foundation, and the hat I'm proudly rocking in the photo is from them (their logo coincidentally matches my first initial! so cool!) This organization was started by a new friend that I met over the holidays who was diagnosed with leukemia at the age of 13. He was a recipient of the Make A Wish Foundation and got private golf lessons by Tiger Woods! Now a 16 year cancer survivor, he decided to start his own project to grant wishes to pediatric cancer patients to bring some happiness while they fight cancer. That's what I'm talking about, guys. Truly inspirational. Check out the incredible work they do, and help them grow so kids all over the state, country and WORLD can find reasons to smile as they fight for their young lives.
www.mywishlistfoundation.org
With So Much Love,
Louie
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December 16, 2015
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| I stayed in that position, popping painkillers every 4 hours, for 2 weeks after surgery. |
I've been in bed for 90% of the past 11 days recovering from my surgery. I had a ~3inch long incision immediately above where the left inner thigh and groin meet that took 8 staples to close up. (Fun fact: surgery staples look exactly like normal staples.) For the first 5 days my life moved in 4 hour increments dictated by my pain med schedule. It was a spectacularly uneventful 5 days, to say the least. One thing I learned is narcotics pain killers added on top of residual effects of the anesthesia during surgery, plus my general weakened physical state, make you extremely constipated. I think it took a good 7-8 days to get any movement. That sucked. #andkeepfeedingyouandfeedingyouandfeedingyouandfeedingyou
Today was a small milestone day, actually: I took my first shower since the surgery. I had to manufacture a DIY saran wrap dressing to cover my wound area so it doesn't get wet, but damn it feels good to be clean. I'd gained a new found appreciation for baby-wipes last week but that will never beat the real deal.
Last Wednesday I had my follow up appointment with my urologist Dr. Worsham to discuss the surgery results and a general plan moving forward. Here's what we discussed:
- There are two main types of germ cell tumors (which is usually the culprit for most testicular cancers): seminoma and nonseminoma. The one I had was the seminoma, which is the most common form of testicular cancer. The cancer mass was "about the size of a golf ball". There are other types of testicular cancer but I don't feel like writing a report so if you are interested, here's one I've been reading: http://www.cancer.org/…/testicular-cancer-what-is-testicula…
-One of the ways doctors can detect testicular cancer is looking for tumor markers in the blood. Human chorionic gonadotropin (hCG) is one of those markers. Interestingly, hCG level is something doctors monitor to figure out if a woman is pregnant or not. So, if significant levels of hCG is found in a man, that is most likely testicular cancer. Neat. A normal person should have hCG levels that are less than 3 milli-international units per milliliter (mIU/ml), according to Dr. Worsham. My blood test after the surgery showed an hCG level of 5. Doc said this isn't really worrisome because if I still have cancer in my system my hCG level should be in the thousands, even ten-thousands. To be overly conservative, he encouraged me to be seen by an oncologist, which I will do this Thursday.
-I will be seeing my urologist periodically, indefinitely. I'm scheduled to do another blood test on January 9th to monitor that hCG level (I'm assuming) and have another followup with Dr. Worsham on January 12th. After that, for the first year, I will see him once every 3 months; second year, once every 4 months; third year, once every 6 months; and once annually thereafter. Good thing I like the guy. Seriously, though. He wasn't even suppose to be scheduled to be at his clinic on the day I went in for everything, but he jumped on my case immediately and personally squeezed me into his surgery list and made sure I was home that same night in the comfort of my own bed. What a guy.
That's all for now. I thought about starting a website to post all of my updates, but I've decided Facebook will be OK for this. I just don't want unnecessary hassle, you know? I just realized that there's only 11 days to Xmas. Whatever your beliefs, faith, worldview, or favorite sports team, I sincerely wish everyone a happy and heartwarming holiday season.
-Louie
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Today was a small milestone day, actually: I took my first shower since the surgery. I had to manufacture a DIY saran wrap dressing to cover my wound area so it doesn't get wet, but damn it feels good to be clean. I'd gained a new found appreciation for baby-wipes last week but that will never beat the real deal.
Last Wednesday I had my follow up appointment with my urologist Dr. Worsham to discuss the surgery results and a general plan moving forward. Here's what we discussed:
- There are two main types of germ cell tumors (which is usually the culprit for most testicular cancers): seminoma and nonseminoma. The one I had was the seminoma, which is the most common form of testicular cancer. The cancer mass was "about the size of a golf ball". There are other types of testicular cancer but I don't feel like writing a report so if you are interested, here's one I've been reading: http://www.cancer.org/…/testicular-cancer-what-is-testicula…
-One of the ways doctors can detect testicular cancer is looking for tumor markers in the blood. Human chorionic gonadotropin (hCG) is one of those markers. Interestingly, hCG level is something doctors monitor to figure out if a woman is pregnant or not. So, if significant levels of hCG is found in a man, that is most likely testicular cancer. Neat. A normal person should have hCG levels that are less than 3 milli-international units per milliliter (mIU/ml), according to Dr. Worsham. My blood test after the surgery showed an hCG level of 5. Doc said this isn't really worrisome because if I still have cancer in my system my hCG level should be in the thousands, even ten-thousands. To be overly conservative, he encouraged me to be seen by an oncologist, which I will do this Thursday.
-I will be seeing my urologist periodically, indefinitely. I'm scheduled to do another blood test on January 9th to monitor that hCG level (I'm assuming) and have another followup with Dr. Worsham on January 12th. After that, for the first year, I will see him once every 3 months; second year, once every 4 months; third year, once every 6 months; and once annually thereafter. Good thing I like the guy. Seriously, though. He wasn't even suppose to be scheduled to be at his clinic on the day I went in for everything, but he jumped on my case immediately and personally squeezed me into his surgery list and made sure I was home that same night in the comfort of my own bed. What a guy.
That's all for now. I thought about starting a website to post all of my updates, but I've decided Facebook will be OK for this. I just don't want unnecessary hassle, you know? I just realized that there's only 11 days to Xmas. Whatever your beliefs, faith, worldview, or favorite sports team, I sincerely wish everyone a happy and heartwarming holiday season.
-Louie
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December 4, 2015
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| A moment of happiness at the end of the hardest week of my life so far. |
I hope you are all well. As you can see in this picture, I am doing great, even though i just experienced the scariest, most emotionally draining week of my life. There's no easy way to put this: I was diagnosed with testicular cancer. I know. It just doesn't sound right. But it's my reality now and sharing this news publicly is comforting because I know I have all of you as a tremendous support system.
As terrible as this sounds, I have great news. X-ray and CT scan results of my chest, abdomen, and pelvis show that the cancer has not spread to other parts of my body. What an immense relief. Also, I was extremely lucky that things developed very, very quickly: i had my ultra sound examination done on Monday; I was told about my condition on Tuesday; I had my chest x-rayed on Thursday; and I had my urologist appointment, blood work, CT scan of my abdomen and pelvis, and an orchiectomy surgery procedure done today (Friday). Snip snip! (Actually, just one snip). A whirlwind of a week, to say the least, but all is good for now.
The purpose of this post is three-fold:
First, to notify you and to ensure you that I am doing awesome. My parents and Kelly's family all came up today at a moment's notice to be with us. My mom even cooked one of my favorite Japanese dishes, oden, and brought it up while its still warm. That's what I'm eating in the picture. Just look at my expression. That's love at its highest form. Although my sisters couldn't make it, they've also given me so much moral support throughout the week through texts, phone calls, and Skype. Love you guys, and thank you for always having my back.
Second, to encourage everyone, men and women, young and old, to take care of yourself, both physically and emotionally. Learn about your body, familiarize yourself with how you can self-check for the scary stuff, and if you do find something unusual, act on it immediately. And talk about it with people you trust. Don't hold it in and try to deal with it by yourself because it will wear you out.
Third, and this is really what I wanted to focus on, is to reassure you all that there are so many incredible human beings out there even though it may seem like the opposite sometimes. There's a lot of depressing and horrifying news out there in the world today focusing on the evil of human beings. Why do we focus so much on the evil when all we have to do is literally turn around and recognize the goodness of the community that surrounds us? I will forever be grateful for all the doctor's office receptionists and technicians that went out of their way to find ways to fit me in at such short notice; I'll tear up in appreciation every time I think about the nurses that touched my heart with their comforting gestures and making me smile the whole time I was at the hospital. The smallest things mean the most, for sure.
Realize that anyone can empower you if you allow them to. Recognize that positivity is reciprocal; if you show it you'll get it. Who knows, it may end up saving your life.
If you know me, you know that I will come out stronger from something like this. Thank you for being my source of strength through these challenging times.
With so much love,
Louie
