Amy Lanham

finding beauty in the middle of the mess

Tag: chronic lymphocytic leukemia

The Joy of Exhaling


Did you hear about the couple in California back in October that survived one of the wildfires by immersing themselves in their neighbor’s pool? For six hours, John and Jan Pascoe repeatedly submerged themselves to avoid the ash and flames. Luckily, their strategy worked. They walked away relatively unscathed, however their home and both of their vehicles were completely destroyed.

I have a hard time imagining what that experience would be like. I wonder how long they may have had to hold their breath at times, waiting for just the right moment to grab another chestful of air.

My husband, Jason, shared this story with me the same day he received news that his cancer may very well be in remission, and I have to confess that I immediately drew some parallels to our own lives.

Have you ever had a time where you felt like you were figuratively holding your breath? Maybe waiting on news of the results of an interview, final judgments in a competition, willing the pregnancy test to show positive or negative? Waiting can be so hard, and sometimes we are asked to do so for long periods of time.

December 19th, Jason and I made a visit to his oncologist. He’s reached the end of a clinical trial he has been a part of for two years. When his test results came back and one of the doctors told us that his blood work was normal, I felt myself truly exhale for the first time in six years. I’m not exaggerating. It’s like I had been unconsciously holding just part of my breath that entire time.

I think our experience mirrors this couple’s in many ways. For six hours they were up and down waiting and hoping for rescue. They watched things fall apart around them. They were at the mercy of the flames. For six years, we have had to tread the proverbial water. Each visit before the trial as the white cell counts grew we were holding our breath just a little bit more. Then, each visit after the start of the medication it would seep out ever so slightly as the numbers began to go down. We would suck a little more air in when side effects would pop up, or infection reared its ugly head. This sounds way more dramatic than reality, but the feeling is true, nonetheless.

There is so much uncertainty with cancer. Even when operations, treatments, or medications do their job, cancer still steals something from you. Your peace of mind is never the same afterwards. Just as this couple lost treasured possessions, there are things you lose with cancer that cannot be replaced. Peace of mind should not be taken for granted.

Maybe you are familiar with a popular Amy Grant Christmas song called “Breath of Heaven.” It is also known as “Mary’s Song.” Here are some of the lyrics:

I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone
Must I walk this path alone?
Be with me now
Be with me now

Breath of heaven
Hold me together
Be forever near me
Breath of heaven
Breath of heaven
Lighten my darkness
Pour over me your holiness
For you are holy
Breath of heaven

The original lyrics were written by English songwriter Chris Eaton. Amy Grant got permission to rework the song to make it into a Christmas tune. Here is what she had to say about it: “It is a prayer that fits a lot of people’s circumstances, because it is a cry of mercy. Some nights on stage I can hardly get through the song for knowing all of the collective, unspoken pain of the lives in front of me. And so the words become my prayer for the listener and the reader, as well as the singer.”

In Job 33:4, we read, “The Spirit of God has made me, and the breath of the Almighty gives me life.” In Genesis we read that God formed man from the dust of the ground and “breathed into his nostrils the breath of life.” In the book of John, the Bible tells us we must be born of the Spirit. The word Spirit can be translated as a current of air, a breath-blast, a breeze. Not only has God given us physical life, but we have the chance for him to breathe life into our very spirits.

It is for this reason that I cling to my belief in a magnificent Creator. There are times I may not be able to physically breathe, but I have something inside of me that gives me hope nonetheless, that keeps my spirit breathing.

God will not always answer my prayers in the affirmative. Through great research, good doctors, ideal circumstances, and a good physical match between the medication and my husband’s body he was healed this time (at least for now). When the breath of life is taken out of our bodies, or those we love, we can cling to the hope of the breath of heaven that can reside within us.

A few days after our good news I purchased this sign as a gift for Jason. We are looking forward to many more years together.

May you find yourself exhaling soon if life is hard or uncertain right now!

Blessings,

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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