Fast facts (if you don’t have time to read the full post): This week, April 5 – April 11, is Adolescent and Young Adult (AYA) Cancer Awareness Week. This week was created to raise awareness about the unique challenges that AYA cancer survivors face each day and to show how their community can help. This group includes folks who are 15-39 years in age. This includes me (I am 29!)

TO THE LONG VERSION!

Pre-orders have officially closed for the “Fuck cancer! Enjoy rainbows!” stickers! 93 of you decided to pre-order 311 stickers! I thought I would get lucky to order 250 with some to spare! Holy crap you all are magical creatures in the world. I didn’t even know I knew 93 people, but I do! I know every single one of you that ordered. I am so grateful for all of you. Seriously. All donations will be going towards out of pocket expenses and my insurance deductible. The relief it gives me right now is immense and I am so incredibly grateful for all of you who have shown up in my darkest hour to make sure I live to blog and tell the tale how I slayed fucking breast cancer. I promise you that I will return this gratitude to you all someday soon and I will fight my hardest to enter remission so I can continue to decorate the world in colorful stickers (and do other things, probably.) That is my pledge to YOU. I will order a total of 350 stickers, so if you need a few extra or have a friend that missed the pre-order, I should be able to help you out!

I found it fitting that I accidentally coordinated the end of the pre-order sticker sales with Adolescent and Young Adult Cancer Awareness Week! According to the National Cancer Institute, about 70,000 young adults (AYA) (ages 15 to 39) are diagnosed with cancer each year in the United States, which accounts for about 5 percent of cancer diagnoses nationally. The most common AYA cancer types include lymphoma, leukemia, breast, colorectal, melanoma, cervical, thyroid, sarcomas, testicular, and brain.

It is clear that cancer does not discriminate, making cancer a challenging experience any time in life. But what I have heard over and over is that I am “too young” to have cancer. I know the sentiment is meant well, but cancer didn’t ask for my fucking I.D. Would it be more okay if I had cancer at 60 versus 29? Can one be an appropriate age to get cancer? I didn’t want it at 29. I don’t want it at 60. And if I am lucky to live to a riper age, I don’t want it then. We as a society have accepted that cancer and other chronic illnesses are the consequences of aging, so that when illness happens in youth, it is shocking and confusing. How can a body so young do something so stupid?! They are “too young!” But honestly, I don’t want this for any of us at any age. Cancer is so unfair. Just because you have lived life longer doesn’t mean it should be okay that it happens. Ultimately, we need a cure for cancer, but I digress because I am not a fucking doctor and I know I am probably preaching to the crowd. I hate that cancer fucking exists. HATE. IT.

So I am here to encourage new dialogue! When you encounter the young folk with cancer, let’s stray away from “You’re too young to have cancer!” because none of us at any age want cancer anyways and move towards, “That shit sucks. Let me help you fuck shit up! We ride at dawn!” Or if that is not your style, how about, “Cancer is stupid. I am here to support you on your journey. What does support look like for you at this time?” Ah, that feels better.

It is worth noting that there are unique challenges that come with a cancer diagnosis at a young age, thus the awareness of the week. I feel like that is strange to say after my rant of “cancer sucks at any age so let’s leave my youth out of it” but I think both of these thoughts can co-exist. We can acknowledge together that when cancer does impact someone young, they have a different experience than someone who is older. Some of the challenges I have seen reported in the AYA community include isolation, financial barriers (including access to insurance), fertility, sexuality and relationships, low enrollment in clinical trials, survivorship, and prevention and screening. I briefly want to just cover a few from my experience:

1. Isolation! Isolation is a big one and I know sometimes I have experienced it, regardless if it actually is happening or not. My friends’ lives are moving forward around me, while mine is not. I suddenly feel stuck and frozen in time. So many of my close friends are so incredibly supportive, but I am acutely aware of what is happening to me can be very unrelatable. I also sometimes experience isolation when receiving chemo. I am often the youngest in the ward, aside from the nurses. Several of them are also cancer thrivers/survivors, but it can feel like all eyes are on me when I make the dreaded walk to my chemo pod for treatment. I’ve gotten some weird looks in oncology. One guy was mad that my friend sat in his chair. Cancer makes us grumpy though, so we let it slide.
2. Financial issues! “Cancer is a matter of life or debt!” This might not be exclusive to AYA folks because our fucking healthcare system is WRECKED, but most AYAs have not established themselves financially. They may also not have health insurance or have aged out of their parent’s insurance. Many find themselves moving back in with parents or other loved ones, which can lead to feelings of shame and further isolation.
   • Luckily for me, I am stable in this moment and will be at least for the next year many thanks to state leave, my job, and everyone who has donated at this point to help alleviate some of my out of pocket costs. However, I have concerns that if my cancer has metastasized to my bones and is unresponsive to initial treatment that this may drastically impact my ability to work. So many folks have asked why I don’t just stop working so I can focus on treatment and healing, but fiscally that is not an option for my partner and I. We bought a home in 2020. I still have bills to pay because life doesn’t care about cancer. Capitalism is a bitch.
3. Infertility! Cancer can have life altering effects, which include issues with fertility. I have seen several AYAs report that fertility preservation was not adequately addressed in their treatment plan. And even when given the opportunity to discuss and explore, fertility preservation is is wildly expensive and not guaranteed. In my case, I was told to do it by my breast doctor and a week later was told I had no time to do it by my oncologist and that it would make my cancer worse. I will not know if I am able to have biological children until I turn 35, assuming I enter and remain in remission.
4. Clinical Trials! I am literally copying an pasting this from the Teen Cancer America site because I think what they said is better than how I can say it: “AYAs, age 15 – 39, get very aggressive and rare cancers and are seven times more likely to be diagnosed with cancer than anyone under the age of 15 according to the NCI’s SEER data. Although the statistics would point to this age group needing more research and clinical trial access, this demographic is still the lowest in enrollment. There is a major gap in the access to drugs and innovation between AYAs. An 18-year-old lower age limit for adult trials is causing the greatest barrier. There is also a significant delay in the opening of trials for some cancers that affect adolescents, with little improvement in outcomes observed over the last decade. Greater efforts are necessary to improve clinical research for AYAs with cancer.” Oof.
   • If you remember early on in my blog, I had the opportunity to participate in clinical research. I ended up not being a candidate because they were looking for folks diagnosed with ductal breast cancer, and I was diagnosed with lobular. I ended up deciding not to participate in the study before I learned I was no longer a candidate due to some of the risks of participating, but it was cool to know my oncologist is very progressive and interested in moving science along. Someday I will end up in a study and contribute to science! It is my GOAL!

I think I could write a whole thesis on this topic because there is a lot we could cover here, but I think for now this is a good stopping point. What I hope you all take away from this post and this week is it’s clear that AYAs need special consideration and care. They also must be advocates for themselves and I am actively learning to be more assertive in my appointments and ask questions, no matter how small. All of you can play a role in raising awareness and being catalysts for change for future AYAs. After all, you all know at least one now!

Here’s to the AYAs. Fuck cancer!

Today’s song lyric of the day is brought to you by JAY-Z.

“Reminisce, talk some shit, forever young is in your mind
Leave a mark that can’t erase, neither space nor time
So when the director yells cut we’ll be fine, ah
Sing”

– Young Forever, Jay-Z, Mr. Hudson