Ovarian Cancer Grad- Randalynn
“The resources we need to live the best life that we can are sometimes hard to find. The treatment centers do an amazing job getting us through the treatment and then it’s like the resources are gone or hard to find and the survivor then has to go out on their own to try and find them. It’s exhausting.”
Name: Randalynn Vasel
Age at Enrollment: 36
Major: High Grade Ovarian Cancer Stage 1c and a focused group of endometrial cancer
What were the primary symptoms you experienced prior to diagnosis?
The main culprits were fatigue (no matter how much I slept, it was never enough), extreme weight loss, heartburn (I polished off a full bottle of Tums in a week), lower back pain and eventually, two weeks before I’d end up in the ER, the pelvic pain and frequently needing to wee set in. My period was inconsistent as well, but we truly don’t know if that was due to the implanon birth control I’d had inserted in my arm the year prior.
What symptom(s) lead you to go to the doctor?
The only reason I finally went to the ER was because I wasn’t able to walk without doubling over in pain – it was like I was in labor. Jaxson (my son) could no longer sit on my lap without it hurting me and I could no longer take the pain, so I went to the hospital.
Courses completed:
During the month of January 2017, I’d have a procedure to remove the “dermoid cyst” and then after discovering it was malignant (which they didn’t see coming), I’d have a full debulking procedure which included a complete hysterectomy, removal of cervix and my omentum. 6 round of carbo/taxol every 3 weeks.
How did you respond when you heard the words “You have cancer”?
I had a feeling it was coming, since I was originally told I’d have the path report back in 24 hours and we were a week post – surgery when I’d get the call. No matter how prepared you try to prepare for the worst, I don’t ever think you truly can be…after folding over in my bed and telling the doctor on the other end of the phone to give me a second…I took notes on everything she said, asked for all of my records electronically and knew what I had to do. I have two children, I had 3 hours to find myself an oncologist and pull myself together before they came home from school…I was going to do everything I could to be okay for them.
What has been your hardest moment(s) since your diagnosis? How have you moved forward through them? I’m not your typical Stage 1c get your treatment and be done kind of survivor…2020 (crossing my fingers as I write this) is the first year I’ve not been under the knife multiple times. For me, it was one thing after another, things kept popping up, preventative measures needed to be taken to make sure I didn’t get sick again and I had to keep going. It’s exhausting – both mentally and physically. Being an outsider, you assume the hardest thing a cancer patient goes through is the treatment itself…but in my opinion, it’s not. The hardest part is what comes next…when treatment stops, but you still look sick, you still have to go to appointment after appointment, you fear a recurrence and your life that once was no longer exists and you have to put the pieces back together in a way that’s a bit different. Don’t get me wrong, it’s not a bad thing but it sure is frustrating and it takes time to adjust. You figure out what works for you, how you do the things you once were able to do and learn to thrive with these adjustments…and quite frankly, it’s sometimes for the better…at least that’s what I’ve found.
What has been your biggest accomplishment since your diagnosis?
Oh gosh, I’ve done some many great things since being diagnosed…I think I finally started living. 10 months post my last round of chemo I hiked form the North Rim to the South Rim of the Grand Canyon in one day (2018), 15 months post chemo I rode my first century ride for cancer research (2018) climbed my first 14’er in 2019, Mt. Sneffels, 2020 has been the year of covid…I was supposed to do another 14’er but travel is on hold at the moment, so between July 1st and September 30th I’m riding 1,000 miles between my Peloton and road bike. But maybe my biggest accomplishment is getting my 2 children through all of this without too many bumps and bruises along the way – teaching them that “cancer” is something that effects all of us to some degree and we need to learn what that means. I’m quite honest with them…they know the doctors can’t help everyone BUT that my medical team does the best it can to make sure that mommy doesn’t get sick again.
What do you believe are the unmet needs of young adult patients within the cancer community?
Where does one start with this question…I have a laundry list of things, but the main few things I can think of are: preparing us for survivorship – what do we need to do because we’ve been thrown in to menopause at such a young age, or we’ve gone through chemo and radiation, what does that mean for our other vital organs that we need to be here for as long as we possibly can be? The resources we need to live the best life that we can are sometimes hard to find. The treatment centers do an amazing job getting us through the treatment and then it’s like the resources are gone or hard to find and the survivor then has to go out on their own to try and find them. It’s exhausting.
What advice would you give to someone who is newly diagnosed? What advice would you tell them to ignore? What advice would you give to the caregivers?
For those newly diagnosed, this is scary, it’s going to feel like you’re sucking off of a firehose until everything is all figured out. You can do this, you just need to get a plan in place so you know what you have to do and then you can do it. This is YOUR process…you choose how you want your appointments to go, who you want to be involved. This is a time to be selfish…allow yourself to be selfish. To the caregivers – we know you’re going through this to, but it’s not happening to you, it’s happening to the person who was diagnosed. Your life is changing, but ours is flashing before out eyes. We know you’re tired, but we’re exhausted. We see all that you’re doing every day, you don’t go unnoticed although there are times it may feel like we don’t see you at all. We will never be able to repay you for what you gave up to make sure we were okay.
How did your family and friends respond?
I lost a lot of friends and had a ton come out of the woodwork that I hadn’t spoken to in years. My mother was the first to find out – she lost it and I had to call a friend of hers to come and help her, because I was unable to do so. My family was already in the throes of a cancer battle with my mom’s dad who was already in the final stages – then I got sick and it was like WTF, how are we going to manage this. Mom friends from school helped make sure the kids had meals and play dates so their lives seemed as normal as possible.
When you feel overwhelmed or anxious, what do you do for relief? You can usually find me on the bathroom floor in tears…on a LONG walk…I’m talking LONG…until Covid, I kept myself going non-stop because I didn’t want to stop and think about all that had happened. Everyone has their own coping mechanism.
Describe a situation where you “got back up”:
The fall of 2018 was a rough one for me mentally. In August I’d elected to have a prophylactic bi-lateral double mastectomy due to family history and we scheduled if for the second week in October. 24 hours before heading in to have the procedure I had my 6 month ultrasound on my gallbladder, we were monitoring a polyp inside – as luck would have it, they’d tell me it’d grown to the size that it could be malignant and my entire gallbladder needed to come out in order to be biopsied. My head immediately started spinning and all I could think about was the possibility of having cancer growing inside of me again, but not being able to do anything about it because I had to proceed with the already scheduled surgery the next morning. Fast forward three weeks and I’d meet with my general surgeon to discuss options and find out the game plan and that I’d be going in to surgery 2 business days later because they were able to find an OR with a timeslot. In December a dear friend of mine would end up in the hospital and I’d need to fly with short notice to spend some days with her in the hospital. A few days later everything that I’d been bottling up for the past 2.5 months came crashing out…I couldn’t stop crying, I couldn’t do this anymore (pretend I was okay when I wasn’t. pretend that the double mastectomy was no big deal because it was my choice. Pretend that I hadn’t already prepared myself for my biopsy results from my gallbladder to come back malignant. And I could no longer act like signing my friend’s DNR was totally normal.) I’d text my oncologist and tell her I wasn’t okay, that I needed help…that all of this had been too much for me to go through at one time. Admitting all of these things was the first step to me trying to gain some control over what had happened, allowing myself to finally acknowledge that all these things that had happened over a 10 week period weren’t normal and I didn’t have to act like they were, even if they seemed normal for life as I know it. I “got back up” by adding some medication and talking to a counselor.
Do you have any new daily/weekly routines since your diagnosis? If so, what are they? How have they improved your quality of life?
I workout 5 days a week – this not only helps with my mood, but is also necessary since I was thrown in to menopause at age 36. Cardiovascular health and bone density are two things I need to be very aware of and take preventative measures towards ensuring I’m doing what I can since both of those things are something I have to now put at the forefront of my mind due to the whole surgically induced menopause. Recently I’ve started taking melatonin to help with insomnia and even more recently I’ve taken a food sensitivity test and reduced my sugar intake to try and lessen the inflammation my body is producing. All in an effort to keep cancer at bay. I can say over the last 6 months, were most have felt trapped due to covid, I’d say I’m actually thriving. I’ve done this whole thing before…and although I’m irritate as all heck that I can’t travel, it’s given me the time I need to refocus on these things and make them a priority again…I’d gotten quite lacked and was feeling like crap.
What did you know about the type of cancer that you were diagnosed with prior to your diagnosis?
Not a damn thing except that it happened to women of an age older than mine, and they succumbed to the disease more times than not.
What do you now want people to be aware of?
If you have ovaries, you can be diagnosed with ovarian cancer – regardless of age, race or gender identification…if you have ovaries, you need to be aware of the signs and symptoms. Bloating, fatigue, weight loss, inability to eat/feeling full quickly. Pelvic/abdominal pain,
Have you experienced any shifts in your outlook on life due to your diagnosis? If so, what are they?
I’ve started putting myself first, which being a mom wasn’t something I did before. I don’t really hold back, what you see is what you get – direct and honest, I don’t have time to BS around or try to appease someone. Things aren’t always black and white – people are allowed to have their own opinions even if it’s not something you would necessarily agree with…the small things are small things, let them go. If put effort into those relationships where a reciprocated effort is being put forth – I just don’t have the time or energy to waste…life is short, I’m exhausted and there are a lot of things I want to do, see and experience!
Have you created any meaning out of this experience?
I don’t believe in the whole things happen for a reason…if I did, that would mean that I’m supposed to learn from losing people who shouldn’t have left this earth when they did. There’s nothing to learn from most of those things. I’d say my mentality is a pay it forward, pay it back – meaning to date, I’ve been spared. I dodged a bullet being diagnosed in an early stage, literally. It’d be doing a lot of women who’ve lost their lives and those that are in a constant fight for the life a lot of injustice if I didn’t use my story to spread awareness about this deadly disease. So I continually share.
How did/do you find joy during this experience?
On my good days, I made sure to get out and about – drive when I had the energy to, go to all of the children’s activities and to be honest, I loved the days when I got to be home alone, without any supervision – LOL!
What has your cancer experience taught you?
To stop waiting – do all the things, time’s too short not to. It’s never going to be a perfect time…life isn’t perfect, so quit trying to make it that way…live in the messy and teach your children to do the same..
What do you want your legacy to be?
That I gave everything my all and taught my children what it means to give unselfishly. I never gave up
If you could write anything you wanted on a billboard in NYC’s Times Square that would reach millions of cancer patients, what would it read?
BE SELFISH – This is the time to focus on YOU! Do NOT let this bump in the road define you – don’t let it steal your joy!
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