It is after FD1 that I really became close to Hugo. We chat almost everyday and when I made the trip to Pennsylvania to see Jam, another FD1 volunteer, we made a day trip to meet Hugo in Erie. Hugo is an amazing soul. I am looking forward to an amazing weekend when she makes a trip here to Indiana and I can't wait to make it out to New York!
In addition to September being Gynecologic Cancer Awareness Month it is also Blood Cancer Awareness Month. I asked Hugo if she would be willing to share her cancer story with me and then if I could use it on the blog. I'm honored to be featuring her story today. #FDFamilyLove
I was "normal" for a few months, just had my "benign" lump along my neck. It was so big that I would gross people out with it - you know when you hunch your shoulders forward and there are divots above your collar bone? Well my left side was filled with a gnarly mass. I was totally comfortable though, because my doctor said it was nothing to worry about.
It was when I went back for my follow up in October that things changed. My doctor thought that is should have been gone by then, so he scheduled a biopsy. They ended up taking out a hockey-puck sized mass of abnormal lymph nodes. A few days later, while I was recovering, I walked into my parents' bedroom to find my mom crying after she had gotten my biopsy results...it was cancer. (I'm still angry about the fact that my doctor told both my parents first before me, even though I was 20 yrs old).
We found an amazing oncologist and started the process of staging my disease. After scans, exams, and a bone marrow biopsy (worse pain of my life to date) I found out I had Stage 3A Hodgkin's Lymphoma. I had cancerous activity in my lymph nodes of my neck, chest, abdomen, and pelvis.
Dr B started me on AVBD, which is the first-line treatment for Hodgkin's Lymphoma. I had a PICC line placed in my arm (like a more permanent IV) and received chemo every other week for 6 months. Chemo was rough, I would feel like crap for 4-5 days after chemo, and I slept a lot. I had to get bone marrow stimulating shots weekly for half of my treatment because my blood counts kept dropping too low to get chemo. I wasn't a candidate for radiation because I had so many areas of disease, the radiation field would have been too big.
After 6 months of chemo, other treatments, and a slew of CT scans, my 6 month PET scan showed complete remission!
I immediately jumped back into being "normal". In addition to dealing with cancer treatments I had worried about school. Being in my junior year I didn't want to fall behind, and I didn't want to admit to myself or anyone else that I was sick. I was told I was not allowed to return to school, but I fought with the administration to finish one course from home. After treatment finished I worked twice as hard to graduate on time with my class. Once everything calmed down I really struggled without a set end goal - I had beat cancer, graduated on time, but now what? This feeling lasted for a long time, but I suppressed the feelings as best I could to be normal again.
Many years later I realized I had never dealt with the emotional side of being sick or with how much it had changed who I was overall. Going on at trip with First Descents is what finally helped me realize what I needed to deal with. I had avoided support groups when going through treatments, I wouldn't even use the word cancer or oncologist, I was in denial that I was sick. It took going to FD to realize what an impact cancer had on me - hearing others speak the thoughts right out of my head, or finally sharing my story, my thoughts, and worries. I left my first trip feeling like a giant hole had been ripped out of my soul. I hadn't known I needed these things to be a part of my life until they were gone. I cried the whole flight home and the whole next day. I went through a slump after that for about 5 months, struggling again with what are my goals, what is my purpose, why did I survive, why am I not living the fullest life I could possible have... Thankfully with the help of an amazing counselor I was able to sort through these emotions and I feel so much stronger and centered for it. And by going through all of this I realized FD is part of my purpose in this life. Survivorship is my purpose. I now live a more fulfilled life and finally feel like I know who I am again...I am Hugo.
- "Hugo" Guinevere
How did you feel when they told you that you were in complete remission? Excited, but insecure that it was really true, hard to believe after all that treatment and procedures and visits that you're all of a sudden just done.
Do you still have to see your oncologist, if so how often? I don't anymore, my primary care follows me now. I did go to the oncologist for 10+ years for a yearly follow-up after being cleared from disease.
Do you have things that you are suppose to watch for due to having cancer previously? Warning signs? These cancers don't have specific symptoms, which is what makes them tricky to diagnose. At this point, because I've been cured, I would be more likely to get a secondary cancer from treatment rather than a recurrence. So blood work is the best thing to look at, but also just general symptoms of being sick, or changes to my health.
Are there any overall warning signs for blood cancer? Often symptoms are vague, things like fatigue, bruising more than usual, unusual bleeding, or lymph node swelling. Other things to watch for are unexpected weight loss or night sweats.
If you could tell someone newly diagnosed one piece of advice, what would it be? Go to First Descents, lol! For real I would say that as much as the whole thing sucks, and it truly does suck, you're going to get through it, and in the end you've joined a group of amazing people out there who "get it" (and you'll find that family by going to First Descents!)
If you wanted someone to learn one thing from your story, anything, what would it be? That you can't suppress and ignore major life events that happen, sooner or later you need to deal with them and accept them. Thanks to First Descents I learned that, they gave me back myself