#7Stories7Lessons - Live Today

Note: this is the long version of the my story that I told in my #7stories7lessons Video 1

Have you heard someone tell you to live one day at a time or live in the moment? And you think I know what that means, but am I doing that?

Here is my story on how I learned to live one day at a time.

The Day that changed my life:

At the age of 23, having a wife of 2 years, and 2 sons under the age of 2, I was given the word that I had cancer, AML. I still remember that day locked in mind like events of 911. As I laid there in my hospital bed, I begin the mental battles in facing cancer. I thought OK I have cancer, I probably have a couple of years before I die. I have lived a full life to that point in time and I was not afraid of dying, because of my faith in God's promises.

As I laid there I thought of my wife and sons. Who would take care of them? Who would raise my sons to become men? I wanted to be there for them. I did not want them to live a widow and fatherless. My heart broke for them at the suffering they might face. Right then nothing else mattered but those important to me.

Living for the Day:

My life became about now and not the future. How could I make this day, maybe my last day mean something? I learned to look for the small things that might bring meaning to the day. Small things that I could do with family to make memories. Small ways that I could embrace them to let them know they are loved.

Close to death:

Leukemia is different from other cancers as it attacks your bone marrow in a way that creates blood cells that are useless. In an acute case your body floods with cells that can clog your blood system and lungs to the point of potential suffocation. I want through a severe acute stage soon after being admitted to the hospital. Later I learned from my doctor, that when he first saw me, he didn’t think I would live through the night.

I remember that day having had a powerful near-death experience. As I struggled to breathe, an overwhelming sense of peace flooded my soul. Nothing like I had known to that point in my life nor have I known afterwards. I can best explain it as a sense of falling asleep in the arms of God and His peace embracing me.

The Treatment:

After surviving that initial blow, I embarked upon several rounds of chemotherapy involving multiple hospital stays. I think I ended up spending a total of 3 months of the next year in hospital through my different stays. Much of the treatment was done under reverse isolation procedures. Normal isolation is keeping the patient from infecting others. Reverse isolation is like the boy in the bubble to protect you from others passing something to you.

The chemotherapy works to kill off the bone marrow to a point that your bone marrow barely survives. Then over the next 3-6 weeks that it takes to recover, the clinicians keep you live through blood transfusions and giving a powerful regiment of drugs to fight off infections. Treatment normally calls for 3 rounds of chemotherapy.

Prognosis:

The 5-year survival rate for AML 30 years ago was roughly 20% and today it is a little higher at 27%. Now if you relapse, like I did after a year of remission, the survival rate plummets. They may be able to induce a second remission, but it becomes harder after each relapse until you stop responding to the chemotherapy altogether. Thus, a physician told me during my second treatment that I might have a 5% chance to be alive in a year.

Being your own advocate:

With the help of my family, my father a physician and my mother a nurse, I learned as much as I could about my disease and treatment options. The physicians encouraged me to seek a Bone Marrow Transplant (BMT) because of the poor success of chemotherapy. I had a sister who was tested and found to be a secondary match, meaning we matched 3 of 5 HLA compatibility markers.

I talked to physicians at a leading hospital in related donor transplants (in my case from my sister), and I talked to physicians at a leading hospital in autologous transplants, meaning they take out a sample your stem cells. In both cases they destroy your bone marrow with high dose chemotherapy or radiation before transfusing the donor’s or your stem cells to recover your bone marrow.

What I learned from my research is that there was high risk of bone marrow rejection if I used my sister’s stem cells, and because the cancer is in my bone marrow, autologous transplants often lead to multiple transplant attempts. Neither course of treatment was going to be pleasant.

 I made my decision based off the answers to 2 questions: first, I asked the physician at each hospital encouraging me to take their treatment, what they thought of the other treatment. The physician encouraging me to try with my sister’s bone marrow confirmed what I had learn about autologous transplants and thought it had little success. The physician encouraging me to undergo an autologous transplant confirmed what I learned about the sibling transplant, that the most likely result would be bone marrow rejection by my body.

Second, I asked each physician, since I must be in remission before receiving a bone marrow transplant, should I live five years after the treatment, which cured me the chemotherapy that achieve the remission or the transplant. They said it was impossible to tell but would credit the last treatment being the transplant.

I decided to forego either transplant option. In hindsight because I am still alive, I made the right decision. I have learned that the hospital encouraging the sibling transplant for secondary matches has stopped making that recommendation because it led to mainly bone marrow rejection and death of the patient.

Now, please, if you are a Leukemia patient, don’t do what I did because it “worked” for me. I only share this part of my story to encourage patients to be their own advocates, to learn about their disease and options, and be a part of the decision-making process.

Survivor Badge:

Here I am over 30 years later, long after the point of being declared cured. I got to raise my sons, who have turned out to be successful in life. I am truly a survivor, simply because God is not done with me yet.

Challenge for You:

My challenge to you is to look for those small things that bring meaning to the day, that make memories with others and shows others that they are loved. If we can do these things, I can think of no better day to live.