It’s been a long time since my last post. I think I needed a mental and emotional break from writing about my experiences because a lot has happened in the past year.
When I started my PhD in February last year, I didn’t realize how mentally fatigued it would make me. Or how working in the AYA cancer world all day, on a project so close to my heart, would leave me little emotional energy to delve back into my own experiences in my free time. But more than anything, I think the survivorship challenges I’ve dealt with in the past year took a toll on me in more ways that I realised. Dealing with cancer related challenges 10+ years after the fact is always something I was warned would happen but never something I was prepared for...nor was I warned about the emotional toll they would take.
But now, I finally feel like I’ve found ways to cope and I’m coming back to myself and coping better with it all...ready to write again. Which brings me back here.
So I guess to start off, I can explain a little about everything that’s happened in the past year - the good and the bad - and how I managed along the way (or didn’t).
In April of 2019, I finally got my act together and had my first survivorship appointment here in Australia, more than a year and a half after moving here. And boy was I glad I did.
Because my treatments have put me at risk for heart problems and fertility problems, and they’ve already caused thyroid problems, I saw an endocrinologist, cardiologist, oncofertility specialist and an oncologist. The cardiologist did an echocardiogram (a kind of ultrasound) of my heart. The endocrinologist checked my thyroid levels since I had been on my thyroid medication for about 6 months. The oncofertility specialist checked my Anti-Mullerian Hormone level, an indicator of my ovarian Reserve (how many eggs are left in my ovaries). And the oncologist checked my general blood counts.
My thyroid levels were a little off, so we increased my dose. My heart was thankfully in great condition and nothing was wrong. But my fertility situation was not so great.
My ovarian reserve was significantly lower than it should have been for someone my age.
So, the specialist talked me through my options: have two babies in the next two years (i.e. try to get pregnant for the first time in the next month and then have a very short break in between babies), adopt, use donor eggs, or retrieve my remaining eggs and combine them in the lab with my husband’s sperm and then freeze the embryos until we are ready to use them. Given I am only one year into my PhD, option 1 was not optimal. Option 2 was possible but I didn’t want to give up on the idea of carrying my own child, and option 3 meant it would not really feel like my own child. Option 4 was also not optimal, being insanely expensive ($10,000+ out-of-pocket expenses) and highly invasive for me (involving lots of hormone injections and procedure to retrieve the eggs.
I was devastated and felt this overwhelming dread, getting dragged back out of my “normal” life, to be thrown into the totally different universe in which I had existed for most of my teenage years - the sick patient who was losing herself in a broken body that continued to rebel against her (side note: totes feel like losing genetic material to create future children has been worse than losing my hair - would totes go back to being bald to get some eggs back!!). Needless to say, my previous tactics of trying to bury my feelings and not think about what was happening were not going to work this time.
I felt incredibly fortunate that my husband was really supportive. I was also so glad that I had, 3 years ago, when we were only 3 months into our relationship, warned him of this possibility. At the time, I told him that my cancer treatment may have affected my ability to have children but it was uncertain, and if he wanted to leave before we got serious, that was the time to do it. But just like he said then, he told me: Clarissa, we don’t know what will or won’t happen in the future and there’s no point in stressing about uncertainties. I love you and that’s that. And this time, he also added: “We could have had trouble getting pregnant without you having had cancer, and there could have just as likely been something wrong with me that could have affected our ability to have children. It doesn’t matter to me how we have kids - we are in this together.” And the sense of relief following all of this was immense - because I hadn’t realised how guilty I had also been feeling about what this all might mean for him - that I couldn’t do this for him the normal way.
So, after about 4 weeks of thinking and passing through all of these emotions, we made the decision to pursue option 4: retrieving my eggs and freezing embryos. I have my first consultation next week and will likely go through the procedure in March.
Having gotten through the emotional rollercoaster of the last 9 months, I have found there are 3 really important things to have/find/do when dealing with unexpected late effects:
- Find a support person - whether it’s a partner, a friend, or another survivor who has been through it (or finding one of each), it’s really important to talk about how you are feeling and get support from someone. I relied a lot on my husband, but I also found another survivor who was going through this around the same time as me, so we have been talking about our experiences together, and that’s been really cathartic.
- Exercise or find an outlet for physical activity. I’ve found exercising, in any form, for just one hour every day or at least every other day has been an awesome stress reliever. Whether taking a walk outside, spending some time on the elliptical at the gym, or swimming, find something you can do to move. Not only does it relieve stress but I also find it helps me maintain a sense of my body being capable of something whereas I’d otherwise be so fixated on what it’s not capable of.
- Exercise caution when searching for answers or others’ experiences on the internet. It’s easy to absorb incorrect information, and more importantly, it’s easy to get scared. Prime example was that just last month, Amy Schumer (who I otherwise love as an awesome comedian) decided she would post a photo of the bruises all over her stomach from the hormone injections you take before going through egg retrieval. Do I already have a phobia of subcutaneous injections? YES. Did I want to see that to get even more scared? NO. So, I found it a lot more helpful to have a good chat with my doctor and get questions answered specific to my situation, without the scary pictures or experiences I came across searching the internet. Everyone can experience late effects differently, so it’s good to make sure you find out what to expect from your doctor based on tests you’ve received/your treatments.
And with that, I’ll end this first post. Stay tuned in the next few weeks for some new posts about identity, body-image, advocacy, and new research related to being a teenage or young adult cancer patient or survivor.