It's not my cancer story. It's everybody's.

2018 has been such an amazing year of growth. I can’t believe we’re almost at Thanksgiving and I’m thankful for this feeling of time flying by. 2017 felt like molasses. (Picture summary at the end!)

First, to everyone who has subscribed to these updates and kept up with my social media... thank you. Thank you so much for showing me love and kindness when I felt extremely alone. Depressed at times (being bald can do that do a person). 

I know that I'm far from being the only person who has experienced any sort of "trauma.” It’s a loaded word that can range from illness to loss of every kind. But I think that's the bottom line: dealing with loss. For me, it was loss of identity in almost every sense of the word: physical, mental, emotional, spiritual. And then it was a slow rebuild that has resulted in a much happier me. A me who understands life in a more balanced and nuanced way than before. 

For others who've heard a cancer diagnosis, it's a different experience. Maybe because they have fewer options for treatment. Because the numbers, those "survival rates" are not as great. Or maybe they had less support at and after diagnosis. I consider myself lucky in that sense. 

Acknowledging that place of privilege, I decided this year that I couldn't just go forward with life the way I'd lived it before. Not that there'd be anything wrong with that; it just didn't feel right for me. 

Enter…

Formerly OneDavid, we do in-depth interviews with recent cancer survivors and turn them into FAQs and timelines for patients and caregivers dealing with a new diagnosis.

You might be thinking, “But there’s already so much information out there now.” You’d be right.

But it’s not very good information, at least not in the way it matters for some people who are thrust into the cancer world so suddenly. Neither my loved ones nor I wanted to know what non-Hodgkin lymphoma meant in medical terms - we wanted to understand how this would impact our lives in the upcoming months or years. How about some ideas into:

  • Where to go for treatment and/or a second opinion

  • Would we be able to work?

  • What would be the likely treatment options?

  • How long would this take?



What’s out there now

A lot of forums out there are great for a sense of community. I don’t mean to take away from them. However, what ends up happening is so similar across platforms. The people who unfortunately have the more negative or worse experiences tend to go on these forums most often, thereby painting a fairly negative and misrepresentative narrative of what the cancer experience will be like for the newly diagnosed who have no idea what to expect.

We want to change that. We curate the stories as best we can to represent more “median” experiences and avoid outliers. If one of our community members has a more extreme experience in one area, we can at least preface with that information. It’s all about setting expectations.

The fun part

I’ve been plugging away at this and it has been such a new experience for sure. I approached this first as a patient just wanting to help others who will unfortunately be where I was in December 2016. I started thinking about and working on the concept earlier in 2018 but really started to hunker down around July. In the last couple of months, I’ve learned a lot more about the landscape. Started wearing more of the marketing and product hats. It was a little frustrating in the beginning because I felt like there was too much to learn but one foot in front of the other many times and time again later… I feel very focused.

Of course I’m lucky to have people like Tim around me who inspire me with incredible entrepreneurial spirit. As a “reforming neurotic Type-A” (lol), it has been a true lesson in balancing work/life and most of all, my expectations and what’s realistic. Having people onboard like John, our resident SEO wizard, has also been invaluable.

Also need to give a shout out to my media friends like Garvin Thomas, Ryan Scott, and Jason Middleton who were the first to give me airtime on my newest endeavor. I will never forget this because it takes courage and faith for people to make a bet on you in the beginning, when you are so young and so unknown.

And of course, we’re always looking for more stories to share. If you know someone who has recently been through cancer treatment (last 5-7 years), please let us know. So many of the people who’ve already shared have said that it helped them in some way, too. The hope is that this is beneficial to both sides.

Tell me what’s up! (stephanie@thepatientstory.com)

I would love to hear any feedback: what you like, don’t like, what you think is missing. No feelings will be hurt. In fact, the more you share, the more grateful I will be. #spongemode

Tim, my hero (again)

Tim donated bone marrow (through blood stem cells) back in September. We went to the hematology clinic at UCSF where I had gotten my chemo infusions/changes. So great seeing the beautiful people at clinic. Nurses truly are such a lifeline for us patients and caregivers. Shoutout to Brenda and Jennifer in particular!

  • Brenda was the nurse who took care of Tim ( so well!) during the stem cell collection.

  • Jennifer was also there and she was one of the first to share her “expert perspective” for The Patient Story! Check her story out here.

Reposting the rest from FB on 9.04:

 Tim with our amazing nurse Brenda at UCSF.

Tim with our amazing nurse Brenda at UCSF.

Back at clinic but this time... it's not me in the patient bed. No worries though, Tim is absolutely fine (better than fine). He's helping to save a life through bone marrow donation. All we know of the recipient is that he's young, maybe late-teens, who's likely been in aggressive chemo treatment before he gets the transplant.

Tim held a bone marrow donation drive at his office right after I got diagnosed with cancer. That is what put all of today in motion. He felt the impact and wanted to make a difference, and today, he is.

I am so proud of my boo but TBH that isn't the point of this post. He didn't want me to publicize this at all but I think the most important thing to do is demystify the bone marrow donation process. Because we need more donors, always. After hearing that, he agreed to sharing about it. He has also agreed to journal his experience so that I can share it on OneDavid. I'll post that up when it's all finito.

And feel free to send your positive vibes and love to this man right here, my hero.

EDIT: Thanks to you all for the well wishes. I didn't write much in detail because Tim will be chronicling the process for OneDavid, but I'd like to just give a brief overview especially in light of some of the questions in the comments. If anyone has anything to add or even correct, please feel free.

1. Getting into the donor registry is extremely easy and painless. You get swabbed. That's it. According to BeTheMatch.org, doctors are looking for bone marrow from people ages 18 to 44 (~85% of the time) but no matter what age, great to give it a go.

2. If you match with someone, you will get a call. This doesn't mean you'll end up donating, though it could lead to that.

3. There are three methods of donation: through bone marrow itself, peripheral blood stem cell, and cord blood (taken from umbilical cord of baby). The most common are the first two.

Pain is minimal. If you go through the bone marrow procedure (maybe 1-2 hours), the doctor will likely use general anesthesia so you won't feel a thing during and maybe some slight soreness after. If you go through what Tim did with the blood stem cells, it takes longer (8 hours overall, 6 hours for actual procedure) but after getting essentially two IVs in, you just lie there while a machine does the work. He had to get 3 shots/day for 5 days leading up the procedure. There are some side effects like bone aches/pain but he said his ranked a 2 out of 10. You will need to rest for perhaps a couple days following but today he's already feeling much better. Shoutout to the incredible nurses at UCSF, especially Brenda, who made him feel so comfortable throughout the day.

And we learned last night that they were hoping for 4-5 million stem cells. He gave 17 million woohoo!

Life!

So much has happened. Man, where do I even begin? It’s tough when so much time has passed. I just realized it’s been nearly an entire year since my last update. Oops. Here are some pics from this year - mostly the latter half - including a #pugdafacial with my family, 4th annual #seastar trip with Christina, Burning Man (Year 5), wedding dates, an amazing trip to DC, etc.

And my fave: the best Halloween costume, courtesy of the hubby.

 
 

OK, till next time #spicystrong army!

GIGANTIC BEAR HUGS TO YOU ALL.

Steph

Stephanie ChuangComment