Wednesday, July 20, 2011

Why We Can Finally Breathe…

My family is my life and they mean more to me than words can say, which is why they were the first things to pop into my mind five months ago when I started experiencing some troubling health symptoms. Among other things, my arms and legs, and hands and feet suddenly became numb and tingly one day and they are still like that now. Over the last five months I have had extensive lab work, four MRI’s, an EMG, and have seen my primary doctor, a neurologist, an orthopedic, and a hematologist. The only problem that has officially been discovered is a torn rotator cuff in my left arm for which I have been to physical therapy and have been released from the orthopedic. Everything else is inconclusive.

Having all of these crazy things going on and not knowing what is causing them has taken its toll over the last five months, but that was nothing compared to what it was like to be given a clue as to what could possibly be the cause.

Almost four weeks ago now, my neurologist called me with the results of my latest labs. I could hear concern in her voice as she explained that I had a low white count, enlarged red cells, and protein in my urine. She couldn’t explain the findings in conjunction with my other symptoms and she felt it was best if I was seen by a hematologist. I felt ok with that and I wasn’t overly concerned. After all, there were hundreds of things that could be causing those types of lab results. I was content to wait the two and a half weeks until the appointment to see what the hematologist thought.

Then, three days later, the wind was knocked out of me when I opened an envelope that came in the mail from the hematologist. Included in all of the paperwork that needed to be filled out prior to the appointment was a copy of the lab slip that contained the orders for my newest round of blood work. At the top of the page, in script that practically dove off of the paper, was the diagnosis, “myeloproliferative disorder.” I had never heard of this before, but it had a dark, looming sound to it. So I did what I always do and started Googling.

After a few short searches, I thought that I was going to be sick. Put quite simply, myeloproliferative disorders are disorders of the blood that cause your cells to grow abnormally in the bone marrow. Some of them are cancerous, some of them are not, and most have no cure. In addition, the tests that were ordered on this lab slip where typically done to rule out multiple myeloma, which is a very serious cancer that ultimately results in death.

The kids and I were outside while I looked all of this up on the laptop. As they played and laughed and rode their bikes, I realized that if any of these tests were positive, my time with them was limited. At best, I could be looking at ten years. At worst, it could be a matter of months. I closed the laptop, shut my eyes tight, and prayed that I wouldn’t be taken away from my family; not yet…not this soon…I’m not ready.

During the course of the next two and a half weeks, Mike and I lived our lives aboard a constant rollercoaster. The first few days were the most difficult. We were both a mix of panicked and sick, shocked and grief stricken, overwhelmed, and desperate. We tried to stay calm. After all, it wasn’t like I had received an official diagnosis. This was just a possibility that had to be ruled out, but the sheer possibility felt like an impossible weight that we carried in our hearts constantly.

It was painful to even look at the kids, and when I was alone and walked past their pictures hanging on the wall, I would sob uncontrollably. They are so little and innocent. What would this do to them? How would loosing their mother at such a young age affect who they are and what their lives will be like? Will they remember me, or will I be a very faint memory in their minds as the years go by without me? My mind swirled with everything that I would miss; graduations, boyfriends and girlfriends, sports, college, weddings, grandchildren. They still have their whole lives stretched out before them, and there’s a chance that I won’t be here to see any of it.

Then, there was Mike. Mike is my heart and soul. He’s everything. I know what it would do to me to loose him. What would it do to him to loose me? How could I leave him alone to raise the kids? I would imagine the three of them and what their day to day life would be like, and my heart would ache.

For two and a half weeks, everything that we did, and everywhere that we went was tainted with the thought of, “Would this be the last time before we know?” I wanted to fill every day with family and fun activities, but the gravity of our situation was never far from my mind. I hated the world for not grieving like we were, and for not knowing the hell that we were in, but I also didn’t want anyone to know until there was actually something to know and grieve. It was painfully lonely, and agonizingly exhausting.

Finally, it was the day of my appointment with the hematologist. I wanted to vomit all day long. For two and a half weeks I had wanted to get to this day, but now that it was here, I wasn’t so sure that I wanted to know anymore. As the hours crawled by until 3:30 PM, I went back and forth between a sense of calm that it would be nothing, and a paralyzing fear that it was something. We left the kids with Mike’s parents and together, Mike and I drove to the hospital.

At the office, I looked around at papers that hung around the room about grieving and accepting your diagnosis. There were angel decorations everywhere and all I could think was, “This isn’t happening. This cannot be happening.”

The nurse called me back and we were escorted to the doctor’s office. Before I was called back, I kept thinking, “If we go directly to an exam room, it won’t be bad news. If we go to his office our worst fears are about to be realized.” We sat on his couch and I went over my history. My heart was pounding out of my chest and I could barely breathe. He started to go over my results and one by one, by the grace of God, everything was normal. I don’t have cancer. Whatever is going on is not cancerous. He couldn’t really say what might be causing the numbness and other symptoms, but it’s not cancer and for now that’s enough for me.

Mike and I walked out of the hospital hand in hand, and for the first time in two and a half weeks we could actually breathe. The feeling was surreal. Together, Mike and I looked into the dark possibility of death and came out the other side; stronger and, though I would have thought it impossible before, more in love than ever.

I don’t have to worry about loosing my family. The looming feeling of dread and despair has been lifted. We are slowly coming back around to the reality that we can just carry on normally again without the fear of what could be. We can go back to living our lives, back to being a family…all four of us.


Leslie said...

Oh, Amy. I am so, so thankful it's not cancer. I hope you get some answers, soon. In the meantime, I'm here for you.