HEALTH UPDATE: CT last week shows no change in the tumor monster. Still hanging around at about 6×5 cm. Not bad considering it started at 22x16x18! Much of the same these days although I’ve been experiencing more severe fatigue. My hemoglobin is low. The red flags are flying in my mind. I’m working on each and every issue I have to eliminate the biggest fears. I’ve got esophagus issues as well. I’m pretty much fucked on that one. It’s broken, so I throw up here and there (figuratively, not literally). I’ll just have to deal with that. PET scan is scheduled March 2nd! That’s the one that will glow if and where there is active cancer! Pretty exciting, huh?
It’s time to reflect. I’m coming up on the 3 year anniversary of my first treatment of immunotherapy. My life saving, miracle concoction. Is this so unreal? If I sat too long to try and wrap my head around this fact, I think I would pass out! I think though, that it is healthy to never forget. I don’t want to dwell on things, but remembering that horrible time keeps me grounded. It reminds me of the uncertainty of life. It reminds me to let the little things go. It reminds me to KEEP GOING!
So much has happened in the past three years. The phases are undeniable to me now. I see no need to revisit my diagnosis and the horror it brought. The early days of chemotherapy and wondering how long I would have lived had my miracle not come true. It was a horrific time. The details are left in the past. However, it was the basis for the phases. It was the bottom of the barrel of my life, so far.
What came after that all time low is best described as complete shock. Imagine completing a scary task. You didn’t want to do the task. You didn’t have a choice. It was your fate. You complete the task and all you can do is pinch your arm. Am I here? Am I really still alive? Did that really happen? It’s hard to believe, but it’s true. You are indeed alive and starting to do well.
From there, everything turns into magic. It’s like there is no pain in the world, most certainly not my world. It’s like heaven on Earth. There is nothing that can happen that could be as bad as what I experienced for the past year. Nothing. I’m tip toeing through the tulips, savoring every breath and every ray of sunshine. This phase lasts for quite some time. I’m not even bothered by the fact I have no expectation that this bliss will last for months. For years! I still think I have just months to live! Yet I’m happy. The gnarly symptoms are under control now. It’s a new ballgame. Until I hit the slump.
My slump isn’t the worst of all slumps. Maybe I’m just confused. I discover that it is really hard to live day to day not know what this cancer will do. Wondering if the miracle concoction will continue to save me or perhaps, since it is an experimental drug, it will kill me? Over the course of the many months on this trial, I have signed a few new disclosures in regards to other participants not making it. There are no disclosures as to why. I don’t expect to know. Why should I be told? I can only speculate and I have to ask myself, was it because of ab122? It could be anything. Don’t go there. But of course I do, because I’m a self-diagnosed hypochondriac with one of the deadliest cancers with no explanations or answers to what my fate holds! This leads me to another disease with no reports, no facts, just me. The experiment. I call this disease, “mind fuckery” disease.
The mind can take you anywhere you want to go. Good places, bad places and everywhere in between! For a while after the glow of survival started to change, I found myself swirling into the darkness. I would like to think it wasn’t completely obvious if you looked at me. I would never want anyone to judge me for not living life to the fullest! After all, I survived! I should be on top of the world! Even though I was feeling the darkness, there was no denying (to myself, anyways) that I felt an obligation to be happy. I had been given the chance of a lifetime that 90% of people with my disease never get to experience. Life. I knew how I “should have” felt. I just didn’t.
There were new pressures that came along with survival. I think that fear of the cancer killing me has held me back for a long time. Held me back from thinking about a future! How could I possibly think of a future if I didn’t know I had one or not? I could compare this to relationships. You don’t just dive into a relationship. You take your time and give more of yourself as you feel more confident the relationship is going somewhere. I’m not giving myself and my feelings just to be rejected. Such is life. I’ve been so afraid to think about the future. How can I plan and almost function as though I have a future?
Time is proving to heal this dilemma. As time has gone on, I’ve grown more and more confident to move ahead with life. Projects. Work. It’s taken a lot of self coaching and patience but I’m feeling emotionally stronger. Do I still have bad days? Days of insecurity? Absolutely yes. But I keep going. I think of cancer less and less. It’s still on my radar as I am still on active treatment. It’s hard to put cancer in the rear view mirror completely when you still have a port in your chest. When you still have a full day of labs, doctor visit and an infusion every three weeks. When you have CT scans every 9 weeks. When you have genetic mutations that have you screening yourself like crazy for any other possible types of cancer because you are now deemed “high risk”. See how incredibly fast things can get dark? Commence self talk. Self coaching. The setbacks are smaller and take less of a bite out of me but I still get nibbled on once in a while.
All in all, I wouldn’t change this life for anything. I have taken what I’ve been given and I’ve tried to get through it all the best that I can. The most awful things are obvious. The most beautiful things are things I never would have imagined had I not gone through this cancer experience. My heart has grown. I have a new love and appreciation for human kind. My heart goes out to everyone touched by cancer. I truly want to hold the hands of anyone going through this garbage. I pray for the day research can cure everyone. There are so many other things I know can be over said. Live your best life! Appreciate the little things! Don’t take things for granted! It’s all true and then some.
To make this three year story short. How it started? It started in the ER when the tumor monster was discovered. How is it going? It’s going pretty damn good.
2 thoughts on “How it started. How it’s going.”
WOW Cathy, this one was one of your bests. So honored to be able to read your story. Omg. Tears… love you and thinking of you.
You are the sweetest. Love you so much. xoxo