Welcome to Cancer Bootcamp!
I’ve always loved words, which is why I became a writer. Words are powerful. When they are used with the best of intentions, they can provide support and comfort. In this blog I will endeavor to do both, sharing what I’ve learned along the way on my cancer journey in the hope that it might help someone else who is battling this disease.
Let me be clear that these are just my opinions, based on my experiences only. But over the years people have often reached out to me with questions that they only feel comfortable asking a person who’s been in the trenches, so to speak.
So, I am sharing my wisdom, such as it is, with you. Take from it what you will.
In Christ, who makes all things possible,
Jackie
Hey, warrior! Welcome to my blog. Perhaps you don’t feel much like a warrior right now. Maybe you feel more like a prisoner of war, especially if you’ve just been diagnosed. But don’t sell yourself short. You can do this. The fact is you have no choice. You have cancer. (Or, like me, you’re a survivor, but still battle-scarred.) Unfortunately, there is no changing that. But you can choose how you fight your battle. You can do it with grace and gratitude. Read on if you want to find out more about that. Or you can stay stuck in self-pity and irrational anger at everyone, including the people trying to help and comfort you.
Those of us in this battle will find our own fighting style, one suited to our unique journey. But, right now, we’re in the same boat. The one that has a leak. And we’re trying to figure out how to swim. So here are some of my suggestions. I’m not going to throw everything I’ve learned over the past seven years at you all at once. Rather, I’ll do it out in bite-sized chunks that are more easily digested.
First things first:
Skip the “Why?”
When I was diagnosed with Myleodysplastic Syndromes (MDS) in October 2005, I had a lot of questions. But one question I never asked was why. No, I didn’t deserve this, but then, who did?
Certainly not any of those little kids I saw in the St. Jude commercials on television. Certainly not my brother, who died of a rare cancer when he was only 44. Certainly not my lovely mother-in-law, who died 14 years earlier of the very same disease I now had. What made me so special that I should get a free pass? The answer is nothing. So, instead of asking why me, I left it at, why not me?
I also chose not to linger over how this had come about. Oh, I wondered, sure. That’s only natural. Was it all the junk food I’d eaten, the diet cola I drank, my on-again, off-again relationship with exercise, the poor way I handled stress, the three rounds of infertility treatments in my 30s that had pumped me full of hormones and hope only to end in loss and heartache?
The hematologist who diagnosed me asked if I had ever been exposed to benzene, a carcinogenic chemical linked to this cancer in particular. But I couldn’t think of anyplace I would have come into contact with it, at least not for enough time and in enough quantity to cause a gene mutation and the resulting blood cancer. So, my advice is don’t get tangled up in why. You’ve got bigger battles looming on the horizon. The past is past.
Why and how you got to this place isn’t as important as what you are going to do now that you are here.
You have cancer. Now what?
You are here
Not long after my diagnosis, I moved on to acceptance. Yes, it was a lot to take in, especially at first. I had cancer, a kind of cancer that without intervention would progress into Acute Myeloid Leukemia (AML) and kill me. A battery of tests predicted that conversion would happen within 18 months. My only hope was a bone marrow or stem cell transplant that would give me about a 50-50 chance at a future. (BMTs and SCTs are basically the same thing, but the method of retrieving the donor cells is different.)
I was in the middle of writing a book when my doctor called with the diagnosis. I also had a clothing graphic design business and was in the process of filling a large spirit-wear order for a local school. I finished up the order with help from my sister, sold off all my equipment and contacted my editor at Entangled Publishing to let her know that the book I was writing would not be coming. (I still haven’t finished it. Right about the time I attempted to do so, I relapsed with full-blown leukemia.)
Back to basics
You need to become a lean, mean fighting machine. To do that, I stripped away all the extra things in my life, so I could go into full warrior mode. Getting well was paramount, and tying for first place was seeing that my husband and two boys, ages 10 and 15 at the time, didn’t become casualties of this war.
You might be thinking you’re not strong enough. You are! But I get it. I didn’t think I was, either. I remember falling to my knees one day, asking God to help me, wondering where I would get the strength I needed for this kind of fight when I felt so weak and tired all the time. At that point I hadn’t even gone through the grueling regimen of chemotherapy and then transplant.
It wasn’t immediate, but very soon after that day, I realized I didn’t have to be strong, because God was strong. He was my strength. He would go into battle for me. I just had to be still. Be still and know that I am God.
I hope I haven’t put you off with my inclusion of faith. I know not everyone believes in God. But I do and my faith was and has continued to be a lifeline. Cancer has only made my faith stronger, opening my eyes to God’s goodness and grace. I used to keep my faith to myself, and while you won’t find me on a street corner preaching to passersby, I happily profess who I am and whose I am.
For me, God’s strength has helped me through the most trying times. It has helped me stay positive. If you don’t feel that way about faith, then perhaps you have another source of support upon which you can draw for the mental fortitude this journey requires. If so, tap into it. Make it your center.
That’s all for now. I have lots more to share, but small bites, remember? Until my next post, if you have a question, please feel free to message me. I will get back to you and I may address it in a future post.
Be courageous, warriors. You’ve got this. Cancer can take away a lot of things, but it can only steal your humanity if you let it.
Jackie
Jackie,
Your story is inspiring. Cancer sucks. One thing that a cancer fighter does not want is pity. That has no place in our lives. Prayers sure. Pity no.
3 years ago, this October, I was diagnosed with laryngeal (vocal cord) cancer. Almost the same age as my mom and her throat cancer fight. The oncology team suggested radiation therapy first, possibly maybe surgery. I was concerned about surgery, I watched my mom struggle for almost 20 years with eating and aspirating. We opted for radiation. I tolerated it fairly well, but the cancer came back. Surgery was suggested next, to remove my vocal cords. I did what little research that I knew how to do and narrowed it down to 3 doctors to visit. The one I chose was at U-M Ann Arbor.
The surgery was set for August 3, 2021. In July I lost my voice completely, and was having difficulty breathing. Without surgery, I knew I would not see Christmas. I was not afraid for myself, but for my wife Corinna, my kids, and 4 (now 5) grandkids.
The surgery was successful. Afterwards, they inserted a prosthesis (a small plastic one way valve) in my esophagus so that I can talk. I can also eat and drink normally and was leading a fairly normal life. Until February.
I was not feeling well. I went to urgent care, and X-rays were done. I had a buildup of fluid in my lungs that was drained in the ER. They did a CT scan and found that the cancer had spread to my lungs that was not detected at last scan.
Currently I am going thru chemotherapy and immunotherapy. I am on my 5th treatment of 6. A CT scan showed the treatment is working so far. The cancer has reduced in size. I will still receive an infusion of immunotherapy every 3 weeks for at least 2 years. I have been feeling really good. I am lucky and fortunate that it was found early and that I have a great team of doctors and most of all support from my close family and friends.
I always wonder if Danny could have received the same treatments as they have today. Or in another 10 years? I sure miss him, as everyone else does.
About 15 years ago I saw a bill board with Winston Churchill on it. It said “Never ever give up”. I told my kids and their friends that, all the time, as they were growing up. Now they tell me.
I’m so sorry you’re going through this, Jeff. Danny’s mantra was Churchill’s “Never ever give up” speech, too. He did try immunotherapy, which was in its infancy back then. His cancer, however, was very mucinous and, even though it was everywhere, doctors had a hard time collecting enough cancer cells to do immunotherapy. I learned grace and perseverance watching him fight his battle. Sending hugs and prayers.