1826 days
Today marks five years since we walked into a hospital, unaware that it would be over a month before we would walk out...and, essentially, straight into another one. We spent roughly 190 days in a hospital and 113 days in a duplex near the hospital. Or, roughly, 302 days away from home.
So much has happened in five years.
****
Steven has been in remission six days short of four years. (FOUR YEARS!) This is not something we take for granted. In fact, when I weigh everything against where we have been, it’s easy to say “We are doing good!” or "Steven is doing good!" when asked how we are.
Although there might be a handful of things, at any given time, that we are struggling with due to the leukemia diagnosis five years ago, we both know that life at home, free of cancer, is doing good. When we say we are "doing good", we really DO mean it. We both have been worse, in comparison.
However, I have recently felt like I have done a disservice to others by omitting some of the struggles that this journey has held. "Doing good" could be misleading to some. I have been told by a few people in the oncology nursing field that they have directed people to, or printed, parts of my blog for other patients going through what we have. The people that have read it or followed us along on our journey might have been left wondering where life has taken us, or believing it held a fairy tale ending.
I have also had several people reach out to me in the years since Steven’s illness. Most were looking for advice, some were looking for understanding, and others were just happy to find someone who had walked a similar path as theirs.
Because of this, I don't want my lack of updates (on Facebook or this blog), regarding Steven’s health, to lead anyone to assume there is some fairy tale ending.
It is untrue and would be extremely detrimental to believe this.
Let me explain why. When you are in the throes of this disease, or any other struggle life throws at you, you can not help but compare your progress, or lack of it, to others.
With cancer, everyone I have met on this journey has admitted to measuring themselves against people who have walked the same path. You look for correlations where there might not be any, and signs that you might have a similar, or dissimilar outcome. At a time when your future feels so uncertain, you try and find anything that can help you navigate it. For someone to believe that we just went back to living a "normal" life free of any lingering effects would be wrong, and I wouldn’t want anyone to think that they are alone in their struggle.
They are not.
If we have learned anything over the last five years it is that this disease and the treatment associated with it, PERMANENTLY changes your body and mind. In fact, doctors have told us exactly that. You don't just "get over" cancer. Or two stem cell transplants. The effects of it all stays with you.
For Steven, it is easy to identify the physical parts of his body that don’t work like before. His hips hurt. His knees hurt. His eyes are dry and inflamed and sometimes his vision is bad. He is weaker and has less stamina. An ingrown toenail is cause for an emergency doctor visit. As is a lingering cold. Physically he is not the person he was before.
The physical changes were/are easy for him to recognize. He can look in the mirror and see the proof.
The mental changes? That is a story all in itself. The rest of the story, actually. A story for another day.
****
When I think about where we've been...I also think about what we've came through. I remember the statistic that was given to us by a nurse. We were told early on that the vast majority of couples that had a spouse going through Steven's diagnosis ended up divorced.
I was appalled...and a little judgmental. Five years has taught me many lessons.
Don't judge what you don't understand. This road is HARD. You change. They change.
Did I mention that it is hard?
However, for me, it is worth it. Every morning that I wake up with my husband next to me...it is worth it.
(Not to mention it is affirmation that I haven't killed him yet.)
(Despite cancer, some things never change.)
(Just kidding.)
(Kind of.) :)
****
This road has been a struggle and I have no doubts that we haven’t seen our last. But there is hope. And help. And support. And my prayer is that our story gives others hope.
If you are traveling down a similar road, don’t give up. Think of all you stand to miss.
It doesn't have to be a struggle caused by cancer. There are plenty of curve balls that life can throw your way. I think it is safe to say that most of us, if not all of us, are not the people that we once were. For a variety of reasons. In a variety of ways.
God has used the struggles of this last five years to build a relationship with me that I didn’t know was possible. He will do the same for you.
The support that has came from a wide-reaching community is one my mind could not have fathomed five years ago.
I will be the first to admit that I don't have it all figured out and I am as far from perfect as they come. I’ve been known to “cuss a little”, I love Kid Rock, and as mentioned before, at times my patience runs thin.
I am too quick to judge others and myself.
The list goes on and on. Ask anyone.
However, despite my long list of flaws and inadequacies, I have never seen God as clearly as I have the last five years.
Whether you are a patient, a husband, a wife, a caregiver, a friend, a mother, a father, a son, or a daughter...don’t give up. Don't grow bitter. Don't turn away from those you love, turn towards Him. Each morning God allows you to wake up is yet another day to continue on His work in progress. A day to grow closer to Him and to His will for you.
We aren't done until He says we are... And I am so thankful that 1826 days ago He wasn't done.
So much has happened in five years.
****
Steven has been in remission six days short of four years. (FOUR YEARS!) This is not something we take for granted. In fact, when I weigh everything against where we have been, it’s easy to say “We are doing good!” or "Steven is doing good!" when asked how we are.
Although there might be a handful of things, at any given time, that we are struggling with due to the leukemia diagnosis five years ago, we both know that life at home, free of cancer, is doing good. When we say we are "doing good", we really DO mean it. We both have been worse, in comparison.
However, I have recently felt like I have done a disservice to others by omitting some of the struggles that this journey has held. "Doing good" could be misleading to some. I have been told by a few people in the oncology nursing field that they have directed people to, or printed, parts of my blog for other patients going through what we have. The people that have read it or followed us along on our journey might have been left wondering where life has taken us, or believing it held a fairy tale ending.
I have also had several people reach out to me in the years since Steven’s illness. Most were looking for advice, some were looking for understanding, and others were just happy to find someone who had walked a similar path as theirs.
Because of this, I don't want my lack of updates (on Facebook or this blog), regarding Steven’s health, to lead anyone to assume there is some fairy tale ending.
It is untrue and would be extremely detrimental to believe this.
Let me explain why. When you are in the throes of this disease, or any other struggle life throws at you, you can not help but compare your progress, or lack of it, to others.
With cancer, everyone I have met on this journey has admitted to measuring themselves against people who have walked the same path. You look for correlations where there might not be any, and signs that you might have a similar, or dissimilar outcome. At a time when your future feels so uncertain, you try and find anything that can help you navigate it. For someone to believe that we just went back to living a "normal" life free of any lingering effects would be wrong, and I wouldn’t want anyone to think that they are alone in their struggle.
They are not.
If we have learned anything over the last five years it is that this disease and the treatment associated with it, PERMANENTLY changes your body and mind. In fact, doctors have told us exactly that. You don't just "get over" cancer. Or two stem cell transplants. The effects of it all stays with you.
For Steven, it is easy to identify the physical parts of his body that don’t work like before. His hips hurt. His knees hurt. His eyes are dry and inflamed and sometimes his vision is bad. He is weaker and has less stamina. An ingrown toenail is cause for an emergency doctor visit. As is a lingering cold. Physically he is not the person he was before.
The physical changes were/are easy for him to recognize. He can look in the mirror and see the proof.
The mental changes? That is a story all in itself. The rest of the story, actually. A story for another day.
****
When I think about where we've been...I also think about what we've came through. I remember the statistic that was given to us by a nurse. We were told early on that the vast majority of couples that had a spouse going through Steven's diagnosis ended up divorced.
I was appalled...and a little judgmental. Five years has taught me many lessons.
Don't judge what you don't understand. This road is HARD. You change. They change.
Did I mention that it is hard?
However, for me, it is worth it. Every morning that I wake up with my husband next to me...it is worth it.
(Not to mention it is affirmation that I haven't killed him yet.)
(Despite cancer, some things never change.)
(Just kidding.)
(Kind of.) :)
****
This road has been a struggle and I have no doubts that we haven’t seen our last. But there is hope. And help. And support. And my prayer is that our story gives others hope.
If you are traveling down a similar road, don’t give up. Think of all you stand to miss.
It doesn't have to be a struggle caused by cancer. There are plenty of curve balls that life can throw your way. I think it is safe to say that most of us, if not all of us, are not the people that we once were. For a variety of reasons. In a variety of ways.
God has used the struggles of this last five years to build a relationship with me that I didn’t know was possible. He will do the same for you.
The support that has came from a wide-reaching community is one my mind could not have fathomed five years ago.
I will be the first to admit that I don't have it all figured out and I am as far from perfect as they come. I’ve been known to “cuss a little”, I love Kid Rock, and as mentioned before, at times my patience runs thin.
I am too quick to judge others and myself.
The list goes on and on. Ask anyone.
However, despite my long list of flaws and inadequacies, I have never seen God as clearly as I have the last five years.
Whether you are a patient, a husband, a wife, a caregiver, a friend, a mother, a father, a son, or a daughter...don’t give up. Don't grow bitter. Don't turn away from those you love, turn towards Him. Each morning God allows you to wake up is yet another day to continue on His work in progress. A day to grow closer to Him and to His will for you.
We aren't done until He says we are... And I am so thankful that 1826 days ago He wasn't done.
Comments