One year ago, I started the fight for my life. It was worth it.

Posted by korinja @korinja, Feb 12 1:02pm

I always expected that I would someday die of cancer. I never expected that I would fight it.

Looking back, I’ve probably always been somewhat depressed. Depression runs in my family, just like cancer. I watched my aunts, uncles, grandfather, and father endure chemo treatments. I saw the weight loss, the hair loss, the eventual end. I thought, “Not me; if this happens to me? I’m just done.” I didn’t expect to be diagnosed with Stage 4 peritoneal cancer at 42.

One year ago, I left work mid-day and drove myself to the ER because after 2 rounds of antibiotics for pneumonia, I still felt crappy. The urgent care PA I had been seeing told me that I needed to go, that I would likely be admitted and given IV antibiotics for what she thought was antibiotic-resistant pneumonia. I knew of others peripherally who had a bad strain of whatever the “crud” was that was going around my workplace. I hated doctors, needles, all of it. When I say that I hate needles, I am more afraid of a health care provider with a needle than I am of being alone in a room with a violent criminal, which I spent a large part of my career doing.

The overburdened hospital on the way home from my office admitted me, and I managed to get an IV started. A CT scan showed that the fluid that previously showed up on an x-ray at the Urgent Care was not pneumonia, but a pleural effusion: fluid that collects between the lung and its lining. The only remedy for which is: a very large needle inserted through the rib cage into the lung to drain the fluid. I was so worn down by this point that I had no choice but to have the procedure done. I can only imagine what a horrible patient I was.

Two and a half liters of pleural fluid was drained from my 5 foot 2 inch frame. The pulmonologist I saw the next day told me there could be several possible causes: cancer being one, but unlikely; she thought it was an infection related to pneumonia. It would take several days to test the fluid, and in the meantime, I was free to go home.

I was discharged after 2 nights, relieved, and feeling better. I went home to my husband and our new puppy.

The next morning I woke up with an ominous familiar feeling. The pressure in my chest was back. I went back to the ER and was admitted immediately. I will never forget the words of the treating physician: “Because the fluid returned so quickly, we suspect malignancy.” I confirmed, “Malignancy? You mean cancer?” She nodded her head.

The next few days were a blur mixed in with more nightmarish instances with unsympathetic health care “professionals.” My husband got the flu from visiting me. Five days later, alone, with a chest tube attached to slowly drain the fluid, the news came: Cancer, of an undetermined gynecological origin. Stage 4.

I didn’t know what to do except I was sure I wasn’t going to do anything to fight it. I called my husband, my family, my boss, my girlfriends. I cancelled credit cards, subscriptions, and arranged for my cremation. A colleague’s wife worked at Mayo and put in a referral for me. It would be a couple of weeks before I could get in. When I finally met the oncologist at Mayo, her prognosis was bleak. “If you don’t do chemo, you’ll be dead in 3 months.” They worked me in and three days later I started chemo.

I hate the word “journey,” but I haven’t found a better replacement. The road maybe? The road was tough. Three rounds of chemo turned into four. My hair fell out — all of it, including my brows and eyelashes. The debulking surgery was harder than I expected, and because my cancer is so aggressive, I developed complications and had to be hospitalized again twice within two months. I also had to restart chemo 3 weeks post-op, for which I was neither physically nor emotionally ready. I finished chemo after 3 rounds post-surgery and was finally ready to begin maintenance treatment. But the CT scan beforehand — those dreaded scans — showed something, something possibly very bad. I had to wait 10 days for a PET scan, needed a blood transfusion, and tried to minimize my anxiety the best I could. A weekend with my girlfriends; a craft project; lots of gummies. And then, finally — the PET scan was clear! Whatever was there 10 days before was gone.

I’ve been in maintenance treatment since mid-October. I live my life in 3 week cycles. Because my cancer is stage 4, I have to have an infusion every 3 weeks for the rest of my life. But you know what? It’s actually a pretty good life! I am retired now. I get to spend my days doing things that bring me joy. I’m in a super helpful support group. Everything I planned to do in my retirement years, I’m doing now. We bought a tiny cabin up in the woods. I get to hike with my puppy. I re-tiled my fireplace. I’ve been able to take some trips, see family, and cautiously hope and plan for the future.

I was the most pessimistic, angry, resistant to treatment person you’d ever met. It was hell, but I survived and came out a better person on the other side. The juice, as they say, was worth the squeeze. And I’m grateful to be here.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

korinja | @korinja | Feb 12 4:35pm

Hiking with my rescue pup.

Denise | @denisestlouie | Feb 12 10:15pm

I love the way you write.

I don't like the word journey either. I use experience and journey interchangeably. I'm on maintenance also for life.

I was listening to Mayim Bialik's Breakdown when she had Dr. Ellen Langer on. Dr Langer is in the psychiatry department at. Harvard. She done a lot of work research and studying the mind body connection over the past 50 years. Her newest book is The Mindful Body.

I'm finding it really helpful for me to think about my situation form a new perspective.

You and your dog look adventurous
Denise

Helen, Volunteer Mentor | @naturegirl5 | Feb 13 8:52am

@korinja I found myself getting tearful as I read your story. Like you, I've experienced cancer that eventually took the lives of both of my parents, aunts, and cousins. My brother and I had often said to one another about cancer- "It's not why me? It's why not me?". I was diagnosed with endometrial cancer in 2019 and just a year later my brother was diagnosed with prostate cancer. Within one year of one another we both went through the frightening diagnostic process, deciding on how to treat, and then the same year we both had recurrences and we both had radiation therapy. And here we both are 5 years later following our own respective cancer surveillance schedules. This is not something I recommend sharing with a sibling but our lives were certainly changed.

And now here you are. I'm grateful that you had expert care at Mayo. I'm grateful that you are here to tell your story and how you decided you would fight cancer. Your final paragraph says it all. That angry and pessimistic person is no longer you. You are the person who takes walks with your puppy on the trails. (Your puppy reminds me of my friends' dog I used to take care of when they traveled. Their dog was a Teddy Bear mix and was quite the scamp). You approach your future tentatively and with hope.

What else do you like to? Do you like to read? Fiction? Non-fiction? If yes, what are you reading now?

Helen, Volunteer Mentor | @naturegirl5 | Feb 13 8:59am

In reply to @denisestlouie "I love the way you write. I don't like the word journey either. I use experience..." + (show)

@denisestlouie Thank you for the recommendation of Dr. Langer's book. I'm familiar with her work in psychology and will look up her newest book, "The Mindful Body".

Susan, Volunteer Mentor | @grammato3 | Feb 13 10:47am

In reply to @korinja "Hiking with my rescue pup." + (show)

@korinja Thank you for being so open in sharing your story and the admirable growth you’ve achieved over the course of your treatment. When cancer strikes, there’s no way to be prepared for what lies ahead or how we will respond- physically, mentally, emotionally or spiritually. Yet as you’ve found when a balance is achieved it’s amazing how one can emerge somehow stronger with a clearer perspective and outlook, no matter what twists and turns this unexpected road takes us on. Keep up with your glowing spirit to not only guide yourself but inspire others!

rashida | @rashida | Feb 14 1:13am

In reply to @korinja "Hiking with my rescue pup." + (show)

@korinja you look great! Cute puppy!

korinja | @korinja | Feb 14 1:57pm

Thank you so much everyone for your kind words! @denisestlouie thank you for the book recommendation! I will look for it for sure! I remember reading your posts early on about your fighting spirit, your commitment to exercise, I’ve kept that with me through this. @naturegirl5 I don’t read as much as I should. I went to school for too many years and lost my love for reading along the way. I am going to start again though with Dr. Langers’ book!

korinja | @korinja | Feb 14 2:08pm

In reply to @naturegirl5 "@korinja I found myself getting tearful as I read your story. Like you, I've experienced cancer..." + (show)

@naturegirl5 You are right about “Why not me?” When I was first diagnosed, the young people around me told me I am the strongest person they know. I hope through this last year I have proved them right.

I used to love to travel. I’m apprehensive about taking international trips at this point, but my husband thinks it would be good for me. We are going to go to San Diego for a couple of days next month. Maybe a quick international trip in April before I get my next Pet scan. I’m also going to a small concert (with a mask) in a couple of weeks. (I once went to 3 concerts in 5 days the year I turned 40, haha.) So I need to get back into the swing and make hay while the sun shines. 😊 How about you? What are your hobbies?

Helen, Volunteer Mentor | @naturegirl5 | Feb 15 4:28pm

I know what you mean about travel. I've also been apprehensive about trips outside the continent but I'm rethinking that this year. It's great that your husband is encouraging you to travel more. I found that when I travel I don't think about cancer at all. I'm not in active treatment but planning international travel brings the worry of what is something happened when I'm overseas? Still, that's what international medical insurance is for.

What do I like to do? I asked you about reading because it's my favorite thing to do. Before retirement most of my reading was for work-related teaching and research. So, when I retired I made a point to dispose of all of that. Now I read mostly for pleasure.

I like to ski as you may know from what I wrote above. I'm going to continue to cross-country ski but work on changing my expectations - lowering them a few notches - and focus on technique.

I also love to sing. I'm in a community choir where I initially thought the music would be "easy", whatever that means. It turns out the choir director who is a university professor music, challenges us with difficulty. This semester we are working Mozart's Coronation Mass and also Vespers.

I also like my down time. Is that hobby? Ha, ha. It kind of is for me. This is when I read, rest, and sometimes nap. Isn't it great that we can do that in the middle of the week?

Your next PET scan is in April? or May? Yes, it is time to "make hay while the sun shines". What concert are you going to in a few weeks?

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