Although, of course it's not as simple as just being in remission. I'm never truly "done" with the cancer portion of my life; I still require regular checkups to make sure I'm not having any long-term effects from my treatment.
So let's talk about those! First stop, my ovaries:
If you've ever seen me in the presence of a baby, you know that I start squealing, "LOOK AT THE BABY!" and giggling and making noises that only dogs can hear. I've even had a friend take a video of me watching baby videos. I like babies.
So the idea of potentially not being able to ever have one of my own was kind of scary. My oncologist wasn't particularly worried, but she still recommended I get evaluated just to make sure that if anything was wrong, I froze my eggs before I got too old.
I made an appointment at the Strong Fertility Center, and after some confusion with the receptionist, I explained to her that I'm not TRYING to get pregnant, I just need to know if it's even possible. At my first appointment, I gave my doctor, Dr. Bhagavath, my list of chemotherapy drugs and went over my health history. He asked me if my period ever naturally stopped during my treatment, and when I told him no, he was like, "Oh, well that's great. I don't think anything's wrong."
They did a bunch of blood tests for different hormones, as well as an ultrasound where they can literally count the number of follicles on your ovaries, which blew my mind. A few days later, I went for my followup to go over the test results, and the doctor said, "Your results aren't just normal, they're fantastic!"
It kind of cracked me up how excited Dr. Bhagavath was, but he said the average age of his patients is 38, meaning he's not often delivering good news. For someone my age, it's normal to have about 8-12 follicles in total. They counted 15 in one ovary.
So that was extremely relieving news to receive. He actually said the words, "You look like you've never had chemo," which says a lot given how much I got. And as I told my fiancé, "WE CAN HAVE SO MANY BABIES!"
Oh right...did I mention I have a fiancé? I'm getting married in 6 weeks to Derek, the most wonderful man in the world. =) It's crazy to think about how when I was diagnosed back in 2011, I assumed that I wouldn't live long enough to ever get married, and now here we are, preparing for a wedding! I'm already planning on sending my doctors from the leukemia team a long thank-you note with a wedding picture so I can show them the part of my life they were able to give back to me.
Alright, onto the next issue: chemotherapy-related cognitive dysfunction, or as it is more commonly known, "chemo-brain." Ever since going back to school in 2012, I felt a little "off." I had very close to a photographic memory before my treatment, where I could easily remember dates, addresses, phone numbers, and even credit card numbers after looking at them once or twice. But when I got back to school, I was forgetting names, fishing for words, and I was studying twice as hard to come up with the same, if not worse, results.
I expressed this to my doctors, and they were mostly dismissive of it. They said they don't normally see any cognitive effects from chemotherapy, and I wanted to be like, you literally injected chemo into my spinal fluid like six times, are you seriously telling me that didn't affect my BRAIN at all? Also, ALL OF YOUR PATIENTS ARE FIVE YEARS OLD. Correct, they don't normally see it because they don't normally have kindergarteners coming in and complaining that they can't remember their social security number (real thing that happened to me).
Fast forward a few years, and now I'm working on my M.S. in molecular biology. I take one class at a time, and I often need to watch lectures 2-3 times before I really feel like I understand the information. And when I have to read a lot of dense material, I usually have to have coffee, and if that doesn't work, sometimes Derek will find me crying over my papers because I've been reading the same paragraph for two hours.
Now, you might be reading this and thinking, "Hmm, this sounds kind of like AD/HD." I thought so too.
A few months ago, I saw a neuro-oncologist here at the Wilmot Cancer Center, and after taking some medical and anecdotal history, he said, without hesitation, that I have cognitive dysfunction related to chemotherapy.
Well, great. Tell me something I don't know.
Good news: I feel very validated now that a medical professional has recognized that something is wrong with me. And hopefully this being documented will be a small step towards actively monitoring these kinds of potential deficits in patients. More good news is that I'm still very high-functioning; a lot of people, especially older patients, can have pretty severe and debilitating side effects.
Bad news: They can't really do anything for me. He said a neuropsychological evaluation won't show any deficits because it's not meant to detect subtle changes like mine. He said, "You'll go in, you'll do really well on the tests, and they'll tell you that nothing's wrong." And I guess in the grand scheme of things, that's true; I'm not complaining that I'm stupid and braindead. But even in this situation, I felt a twinge of being dismissed because my problems weren't nearly as bad as what they've seen. And I get that! I'm very grateful that I'm living a happy, normal life. But that doesn't mean that things haven't changed and become more difficult for me.
Since I mentioned that coffee helps me focus, he thought that a prescription of Ritalin might help me in the same way, and I could take it as-needed. I won't really need that until I'm in classes again, so I'll see how it works come January.
When I went to my first appointment at the long-term followup clinic, they gave me a list of all the drugs I was on, the potential long-term effects, and the recommended screening processes for each issue. Now, I always find this list pretty amusing because according to the doctors, it's organized from most likely side effect to least likely. Here is that list:
I laughed in the nurse practitioner's face when she handed that to me, and I said, "How the hell is 'distress' not the top of that list?"
I was talking to Derek about this a few weeks ago - how so many doctors approach medicine from a strictly physical perspective and don't consider the emotional or mental components of a person's health. Because of this, you end up with bullshit lists like this one that put mental health disorders on the bottom as an afterthought. I've had a million echocardiograms to check my heart. I've gotten multiple surveys from MSKCC asking about my eating and exercise habits. I had a fertility specialist tell me I would have no problem getting pregnant at 35. But I also spent 36 hours in an inpatient psychiatric unit after threatening to kill myself. Why was no one monitoring for that?
This leads me to a bunch of important points:
There REALLY needs to be more focus on the mental and emotional impact of cancer in adolescent and young adult patients. I am so grateful that my doctors had the knowledge and understanding of my disease to cure me and give me a second chance at life, but I'm SURE I am not the only survivor who's ever had debilitating depression or PTSD. It took me like two years to be able to get a haircut without crying afterwards. But don't worry, my bone density scan came back completely normal!
Speaking of adolescents and young adults, this is the only group of cancer patients that hasn't seen drastic improvement in survival outcomes over the past few decades. It's a relatively small population, but there are still millions of us who have been affected by cancer and don't necessarily have the the proper resources and support to deal with our kinds of losses, like being out of school, the feeling of isolation from friends and family, or even simply the trauma of having to face the concept of your own mortality at such a young age. This is why I support organizations like the Dear Jack Foundation; it focuses on this specific population and getting patients the support they need.
It's been seven years since my diagnosis, and while it's getting easier and easier for me to deal with post-cancer issues, I really never will be completely done. That being said, let this serve as a reminder to everyone who's supported me over the last seven years that every 9 minutes, someone dies of blood cancer. Not everyone is as lucky as I was, which is why we need to keep doing our part in eradicating this disease. Click here if you want to donate to the Leukemia & Lymphoma Society!
As always, thank you to everyone who's been following my journey since 2011 and continuing to support me, my family, and my cause. Here's to a happy, healthy future for everyone. <3
