WEGO Health Bladder Cancer Campaign

As a #bladdercancer advocate, I know how important it is to self-advocate when it comes to your medical care. I want to help empower others to take control of their diagnosis by being part of their healthcare team. That’s why I am excited to share some free resources and questions to ask your doctors. With the right resources, you are still able to manage a good life without feeling defined by your condition.
Link below & in bio to view the free resources! #urothelialcarcinoma #cancersurvivor #bladdercancer #urologyoncology #ayacancer https://www.cmeoutfitters.com/oncology-education-hub/#patient

#WEGOHealth

AYA Awareness Week 2021

September 2016 Post-operative pic after a radical cystectomy with radical hysterectomy, removal of pelvic lymph nodes and stoma placement

Never had I imagined that I would be experiencing the things I’m experiencing at this point in my life.

No one dreams of these things. As children, no one thinks that by their 20s, 30s or 40s they will be dependent on medications, missing organs, utilizing medical aids daily, or having their body speckled with permanent scarring. Battle wounds.

When people asked my childhood self what I wanted to be or do when I grow up did I say, “OOOoooohhh! I want to be a cancer survivor! I want to have chemotherapy so toxic poisons can be pumped through my veins!”

No one says or thinks those things. NO ONE.

When I was 37/38 and beginning to experience urinary issues, I never suspected the C-word. I knew something was wrong, but I never thought, “This could be cancer.” How could I?! I didn’t even know that bladder cancer was even a thing.

Stereotypically, bladder cancer is an geriatric, chain-smoking, Caucasian male disease. I seemingly had no risk factors. Quite simply, I did not fit the checklist that the medical professionals still erroneously go by.

I was repeatedly brushed off. Despite none of the testing supporting their “diagnosis,” they repeatedly told me that I just had a UTI or bladder infection. Followed my question, “Didn’t you just say there are no signs of infection in my lab work?!”

It was explained away as false negatives with the docs hoping that we’d “caught it early.” At the time, I didn’t know any better.

By the time I was diagnosed, just 3 months shy of my 41st birthday, I was constantly in pain and discomfort, running to the bathroom as often as every 5 minutes urgently, urinating blood clots, increasingly losing my quality of life as well as my social life, and thoroughly and chronically exhausted from being unable to even sleep through the night. They still didn’t believe me. I mean, afterall, a person cannot urinate blood clots on cue.

I broke down into tears in the middle of the Emergency Department when they wanted to discharge me home again with medications and not even a referral because the doctor couldn’t be bothered with even trying to figure out what was wrong with me. The PA that he sent in to do his dirty work took pity on me at that point and gave me referrals to 3 urologists.

Things snowballed from there.

A review of a year from September 2016 to September 2017

Even then, almost 5 years ago, I never thought that the coming things would have transpired, that I would be missing organs, scarred up, traumatized, dependent on a medical appliance, a cane and medications daily. Even my doctors believe I’m essentially a miracle. They did not think I would survive.

This year, for the first time ever, I celebrated and recognized Adolescent & Young Adult (AYA) Cancer Awareness Week with my fellow AYA survivors. While I was just over the edge of the defined AYA age range (ages 15-39) at the point of diagnosis, my experience echoes theirs. I have only begun my involvement in the AYA cancer community in the last year, but I have been welcomed in with open arms. I am glad and grateful for that.

Today’s post honors us all. Those of us who survived and those that didn’t. From those of us who are newly diagnosed to going through treatment to being declared NED (No Evidence of Disease) to those in complete remission and considered cured. We honor those who have physical scars and those who have emotional scars and the vast majority who have both.

Cancer does not just end when treatment ends.

I’ll say it again, cancer does not just end when treatment ends. There is so much more to cancer than just surgery, radiation, chemotherapy and/or immunotherapy. For those in the AYA community, cancer quite often occupies our lives in some capacity for the majority of our lives. There’s no handbook that comes with that and the experiences are as varied as the number of survivors.

AYA Cancer Awareness Week is a time for celebration. It is a time for us to celebrate life. It is always the first full week in April. So if you know someone who is a AYA patient survivor, celebrate with them. Mark your calendars and do it annually. Share posts on social media to honor those no longer here.

The AYA cancer community has special needs from the point of diagnosis all the way through to survivorship and it encompasses every single area of our lives. Many of those things are not being met or are poorly and minimally being addressed.

The faces of cancer have changed. More people are being diagnosed at younger ages. More people are living longer after a cancer diagnosis. More people are surviving multiple cancer diagnoses. These issues MUST be addressed.

This week week I have gotten to spend some time every day with my AYA cancer friends to celebrate life and I will continue celebrating my life daily since the moment I decided to kick cancer’s ass almost 5 years ago.

My legacy is and will be the advocacy and education that I’ve shared about my experiences. Will you help me accomplish that legacy? Review the slideshow below and then share this post now.

September 2020, 4 years from my life-saving surgery