The “Good” Cancer

ironman

Jason at the 70.3 Ironman in Michigan last summer.

I blinked my eyes and when they reopened my world had changed. That fast. A breath.  A heartbeat.  Less than a solitary second and my life felt like it would no longer be the same. Amazing really, how quickly that can happen.

This week marks the two year anniversary of finding out about my husband’s leukemia diagnosis. I remember the day well. We were parked in the lot outside of Outback Steakhouse. I had eagerly awaited the evening. We were going to have a date night, and those are precious commodities when you are the parents of two young children. He told me he needed to tell me something before we went in. Have you ever had one of those “tunnel vision” moments, when you have a feeling something bad is coming and all of your senses just seem to bear down upon one another? The chest tightens. The hearing gets fuzzy. The heart beats faster. All outside distractions are meaningless. I just remember thinking, “This is not going to be good news, but I MUST keep it together.”

Jason had been experiencing difficulty while triathlon training during the winter. He had done all kinds of research on how best to do it and had a schedule all set up, but no matter how much he tried to push ahead or cut back he was exhausted. How confusing, when he knew exercise was supposed to be good for him.

Finally, getting closer to spring, he had his blood drawn at the Cook Health Center. The results showed an elevated white cell count, but they didn’t seem concerned. Jason’s sister was concerned, though. Her nursing instincts kicked in. During a family dinner we were talking about it and she encouraged him to see a hematologist. “It’s probably nothing,” I remember her saying, “but that can be one indicator of leukemia.”  Well, that seemed a bit extreme! Little did we know then what the results would reveal.

The day my husband told me, he had received a call from a nurse at the office of the hematologist/oncologist. She told him his test results revealed a diagnosis of Chronic Lymphocytic Leukemia and he needed to schedule an appointment. That was it. No more information. Keep in mind, this is a Friday. We couldn’t talk to anyone until the following week to find out more information. What did that even mean?  Except the dreaded “C” word. That word we knew quite well.

And of course we made the mistake so many of us make. An internet search. By the end of the weekend I was convinced he would be dead and buried in 8 years’ time.

We got another call from the office Monday morning. They moved our appointment up to almost immediately. After meeting with the doctor, we learned somehow lines got crossed and we should not have found out about the diagnosis the way we did.  She apologized profusely and took great care and time with us to answer all of our questions. We love her dearly. “Oops” is just not a word you want to hear when you are dealing with something like cancer.

I will spare you the abundant details and give you the bottom line as we know it. CLL is often referred to as a “good” cancer. Typically it is diagnosed at the age of 60 or over, and the most common prognosis is 20-30 years. That’s not a bad deal when you are 60, so far as cancer goes. The problem is Jason was 35 at the time. Not so great anymore. The best news is that major strides have been made in just the last two years. Drugs, that are considered non-toxic, are being developed that appear to be quite effective. There is one that is being fast-tracked through the FDA right now that is very promising.

Those who know about his CLL often ask how Jason is doing. While we are so grateful for the concern of others, we always have a hard time answering that question. He is not symptomatic at this time. Possibly, he could go years before symptoms occur. The standard procedure at the moment is chemotherapy, which we would love to avoid with the use of some of these other drugs.  CLL is managed with a watch-and-wait approach. Blood is taken every 4-6 months and lymphocytes and platelets are measured. Doctors do not want to treat too early, because the patient will most likely need multiple treatments over the years, and the less the better.  Jason’s white cell count continues to increase, but at a slow and steady rate.

We are considering clinical trials and exploring options there. That is probably a whole story in itself. But the key word there is “options,” which is hopeful.

We have no idea what the future holds. We choose to be positive, sometimes even forgetting what potentially lies ahead. I’m proud of my husband for continuing to exercise, be deliberate about getting enough sleep most nights, and eating significantly better than he did five years ago. Those things can only work in his favor, and his doctor strongly believes that a cure will be found in her lifetime.

I’m glad the early part of this journey is over. The questions of who to tell, how, when (especially how to or how to not handle it with our boys). The shock and numbness are thankfully gone for now.

Some days are harder than others. The fear raises its ugly head. We are reminded to live in the moment.

As people of faith, we pray and hope. I have trained myself to give thanks for even this, and more importantly to look for things daily in life to be grateful for. God’s goodness is not always readily apparent in circumstances, but his goodness is found in the outpouring from the people around us. And I think I have a greater understanding of God’s character through this.

I would not wish cancer on anyone, but there is something terribly profound about the ability to treasure each day and see it as just a little more sacred.

I have loved ones and friends who have fought cancer and lost, fought it and won, and are fighting tooth and nail this very moment. I am humbled by the brave people I have encountered. All I can say is press on! May you be able to say, “I have fought the good fight, I have finished the race, I have kept the faith,” 1 Timothy 4:7. Here’s to you beating the odds, because they are just a number. The will of the spirit can no doubt exceed the numbers stacked against you.

Feel free to leave a name of someone in the comments section you are praying for right now that is battling cancer.

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9 thoughts on “The “Good” Cancer

  1. Thank you for this, Amy. We found out on Tuesday that Ken’s best friend since childhood has Acute Lymphoblastic Lymphoma (or acute lymphocytic leukemia) he is 28. I have felt sick since I heard this. My heart hearts for anyone (and their families) who have heard that “c” diagnosis. However, you are so right in how it can be amazing to live life and truly cherish every day. I have also been blown away by some families (including yours) with the grace and faith they have walking this path and I have no doubt Neal (Ken’s friend) and his sweet wife Maggie will show the same. Praying for you, Jason, your boys and Neal and his family! 🙂

    • So sorry to hear this Jenna. If he needs any kind of advice, please feel free to ask us. I know it is a different form, but sometimes it just helps to know someone who has been through the process of coping before. If you need suggestions on how to reach out to them, let me know too.

  2. Scott, my neighbor, is battling cancer for the second time and just finished his chemo. They will find out at the end of the month if it was successful. THank you for your prayers and you and Jason and in mine!!!

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