Thursday, November 6, 2014

Causes: National Marrow Awareness Month.

November is National Marrow Awareness Month.  I have personally seen the impact marrow donation can make for individuals and families alike.  This story belongs to Mary, the wonderful and strong mother of my good friend, Adam.  It seems that blood donation is common knowledge (which is great, it's important!), but marrow donation is not discussed or considered nearly as often.  I would say the impact one can make by donating bone marrow is difficult to put into words, but Mary proved me wrong.  After following Mary's story and now reading this post, she sums it up well when she says, "Cancer took things from me, but it also gave me things that I never could have expected." Thank you so much to Mary for sharing this journey.  I'm resisting the urge to go on and on in this intro and I will let Mary do the talking.

When Ali asked me to write something for her blog, my first thought was I can’t do this… but how could I say no? So, please bear with me and ignore any grammar issues :)

2011 was fast approaching; I was in the midst of changing jobs, busy with the holidays, and doing the juggle act between being a wife and mother. Life was crazy busy. January came and I was feeling run down. I found myself having to take breaks during my Zumba classes because I was so short of breath. I caught a cold, with a bad cough, head ache, and low grade fevers. After much nagging from my dear husband, Ross, I made an appointment at our family clinic. 

It was Friday, January 21st, 4 pm appointment. I was seen by a resident, who after examining me thought it was most likely a sinus infection and gave me an antibiotic. He also asked me to have a blood sample drawn since I had been feeling run down. At 6 pm that evening I received a call from the resident. He explained that my blood sample showed some things that were a little worrisome, and they would like me to come in to the clinic the next morning to see a staff physician. The warning bells in my head went off. I have worked in the medical field since 1983, mostly in GI, but I knew enough to know that this was not good. I asked the physician, “what labs were they concerned about?” He told me my white count and platelets were very low. I remember saying "it’s not leukemia right, my white count would be high?” He reassured me it could be lots of things; they would need to do a little more testing to find out for sure what was going on. I remember hanging up the phone, and thinking I have CANCER. I found my darling husband, and told him about the call; he was in total shock as I told him I think I have cancer. I felt numb, I called my sister and told her, as I talked it was like I was talking about someone else. This really couldn't be happening to me. I am only 47, I have too much to do. I can’t have cancer. Saturday morning my husband and I sat and listened as another doctor told us that this looked like it could be a blood disorder, possibly cancer. He wanted us to have another blood draw on Monday morning and scheduled an appointment with oncology. Oncology…the cancer department. We were in total shock. I don’t even remember the ride home.

I come from a large family with 6 sisters, who are my go-to people, my rock. One phone call was all it took and within minutes the rest of family had been notified and the prayer chain and Google searches had begun. It was the longest weekend, waiting for Monday so we could get some answers. I didn’t cry, or break down even once. I had calmness about me, call it shock, or faith, but it got me though that awful waiting period. Ross was a wreck, hovering over me.  My symptoms were increasing fast. By Sunday evening Ross was calling the emergency nurse line because my fever had increased, I had uncontrollable shakes, and my heart rate was extremely high. They told him to continue to monitor me and to bring me to the ER if things progressed. We survived the night. Monday he dropped me off at work, I had my blood drawn. I went to work and started to clean up my work area, it was like I was in nesting mode, like when you are pregnant, and you start to organize everything to prepare for what is coming. I asked my new supervisor to meet with me. We sat in the cafeteria, and I told her I think I might have cancer. I might need to take some time off. I was in robot mode, checking things off the list, still not crying. By 10 am I was feeling awful, so Ross took me home and put me to bed. At 11 am my physician called and told me that I needed to be admitted to the hospital as soon as possible. The blood tests were back and it appeared to be Leukemia. More testing was needed. I was crashing fast, feeling extremely week, and nauseated, I could feel my pulse beating like a drum in my head. I vomited in the hospital lobby waiting room. The first person who saw me was a 1st year medical resident; he was so calming, and caring. As he was getting ready to leave the room he stopped and smiled at me, and said “do not be afraid, God takes care of those who take care of his people”. I felt this peace wash over me.

The days that followed became a blur of blood test, IV’s, medication, and a bone marrow biopsy. I developed sores in my mouth and tongue, making it hard to eat or talk. The biopsy results confirmed what we feared, Acute Myeloid Leukemia, a very fast spreading blood cancer. They explained my options: chemo alone, giving me a 20-40 percent life expectancy of 5 years; Or chemotherapy, radiation, and a stem cell transplant upping my odds to 50 percent. I remember looking over at Ross and saying well I have always been average so 50 percent sounded pretty good to me.

My chemotherapy started the next day, which consisted of 24 hours a day for 7 days. My fevers soared to 105 degrees, I was hallucinating, and my body shook uncontrollably. They moved me to the intensive care unit, putting me on an ice bed to try to bring down the fevers. My family hovered in the waiting room, praying, feeling helpless. Ross was exhausted, staying with me 24/7.

The transplant doctors were so excited to hear I had 6 sisters who could possibly be a stem cell match. Siblings offer the best chance of survival, and less chance of side effects post-transplant. All of my lovely sisters stepped up to the plate and got tested. It took about 2 weeks to get all the results, we were devastated to find out not one of them was a match. There are 10 things they look for and we needed a 10 out of 10 match. Our transplant doctor, who I think of as my guardian angel, told us not to worry. He would find a match. They contacted the Be the Match Foundation and had them run their registry to see if anyone was a match. I started to lose my hair, so I asked the nurse to shave it off. This gave me a sense of control, when everything else in my life was turning upside down. I just needed to have a say in something.

Cancer is like a snake curling though your body, eating away at you. Chemotherapy is like the Marines coming in to destroy the cancer but killing all that is in its path: The good, the bad and the ugly. It leaves you weak, bald, nauseated, vomiting, anxious, and worst of all you never know what horror to expect next. Cancer took things from me, but it also gave me things that I never could have expected. It strengthened my faith in God. It pushed me to really evaluate my life. It encouraged me to talk to people in my life with whom I needed to make amends, and also with ones that I needed to ask forgiveness from. It reminded me to tell my family and friends how much I loved them. I started to read the bible, and began to build a relationship with my creator. It deepened my relationship with my husband, and children.

Throughout this nightmare I witnessed so many good things. People from all areas of my life began donating blood, platelets, and signing up to be bone marrow donors. It introduced me to so many others fighting the same disease as me; children, teens, men, and moms just like me. Each of them taught me so much about life, courage, and love. Most of all, this experience and the people that I encountered during it taught me about faith.
Fast forward a little while, and we were given the news we were waiting for. They found the PERFECT MATCH! A 24 year old girl from Germany was my match.  We were overcome with joy.

The cancer journey is a lot like the Wizard of Oz.  You’re traveling along the yellow brick road, admiring the beautiful scenery and BAM, out of nowhere you are hit with flying monkeys, a wicked witch, and a whole lot of questions. The good old doctor informed us that he had been worried about my high antibody count and had some additional tests done on my potential donor’s blood, and mine. We were eventually told that the transplant was canceled, because the donor’s and my antibodies would not do well together. The transplant would have most likely killed me.  We felt broken. What now? The search began again for another donor. Another round of chemotherapy began.

Imagine being on a crazy roller coaster ride. That best describes the ups and downs my journey. Each time we were given a little ray of hope, we celebrated. We were excited to think we were at the end of the ride, only to have it take a crazy turn that had us free falling into another nightmare. Cancer teaches you that you really don’t control of much in this life. Those things we treasure are just those…things. Like my pastor often says you don’t ever see a hearse pulling a U-hall behind them.

Late April we were once again blessed. Another donor had been found! This time it was a 20 year old female. A truly PERFECT match. Within a month the process had begun.  The transplant was scheduled for July 15th; I would have more chemotherapy and 3 days of full body radiation prior to the transplant. This would once again kill off all my cells, and prepare me for the new stem cells. My donor would be given a growth hormone for a few days to increase her stem cell count. Once her counts were high enough they would draw the stem cells by running her blood through a machine which pulled the stem cells out, and then returned the remaining blood to her. The stem cells would be placed in an IV bag, then into a little red cooler and flown immediately to our hospital. I was feeling overwhelmed for the first time since this journey began. I worried about my donor. I kept thinking about what she had to go through.  Would I want my child to go through something like this? I worried for myself also. I was petrified of radiation. I am not really sure why, after going through chemotherapy, how bad could it be? But I was shaken; I asked everyone I knew to pray for me. Our doctor, the guardian angel, sat us down and gave us all the dirty details of the transplant. He explained that there was 25 percent rate of dying in the first 100 days. We would need to stay in a transplant house for this time period to be close to the hospital in case of an emergency. I would need 24 hour a day supervision. Ross had already been away from work since January, and his boss was putting pressure on him to come back to work.

The roller coaster of emotions was running high. My sisters rallied, and put together a list of caregivers which would allow Ross to work during the days and watch over me during the night. I felt so blessed to have such a loving group of family and friends.  At the same time I was fighting emotions of helplessness. I was always the caretaker, the server, but I had been demoted to being cared for. It was humbling.

The hospital stays, tests, medications, and not working was causing a great financial strain on my husband. Once again our friends and family rallied by putting together fundraisers to take some of the pressure off. This too was blessing, and very humbling. Over and over people stepped up to help us. Cancer has shown us there is so much good still in the world. People DO care.

We witnessed the true power of prayer. We didn't get every prayer answered with a yes, and many times we didn't understand why, but after time passed we saw that God had a better plan. This journey has taught me to trust in God’s promise that I don’t need to fear, because I will never be left alone. God will always go with me. He didn't promise life would be easy, but He did promise if I placed my faith in him He would provide me with all the strength and courage I would need to get through anything.

The evening before my first radiation treatment a peace washed over me, and I slept like a baby. Morning came; the escort wheeled me to the treatment area with my husband, son and youngest daughter in tow. As we waited, I felt so much peace.  It was as if my wheel chair was floating off the ground. I can do all things through Christ who strengthens me.

July 15th, Transplant Day, had arrived. The skies opened, and rain poured down. The clouds were black as night, and streets began to flood. We waited, and worried the little red cooler would not be able to make the flight. My family and friends came, decorated my room with streamers and delivered a birthday cake. We waited. Around 5 pm the little red cooler arrived and the transplant began. With my husband, and 3 beautiful children present, the liquid gold was placed into me. My sisters, parents, and best friend took turns celebrating with us blowing birthday horns and singing Happy Birthday.

In June of 2012, I was blessed with the opportunity to meet my donor and her friends and family. We got a chance to thank her, and to show her what her selfless gift she had given to me and my loved ones. She had given us sweet, precious time.

I do not fear death. I believe this is earth is a stepping stone to something far greater than I can ever imagine. I am so grateful for this precious time. I have learned on this journey that in life there will always be troubles. Some are big, some are small. It is how we respond that will affect the outcomes. We each have a choice with how we react; I choose to be faithful, to live life to the fullest, and enjoy all that is given to me. I choose to make a difference on this earth with every second of time God blesses me with. I want to die with no regrets.

Here is the link to the Be The Match Foundation registry.  It only takes about 15 minutes to register. It consists of signing a consent, swabbing your mouth with a Q-tip (a kit can be sent to your home) and then having your data stored in a database. This database is used by hospitals all over to find matches for patients in need. If you are one of them, the Be the Match Foundation will contact you to see If you are willing to be a donor.  If you still are, they will schedule a set of tests to see if you qualify. If you do, you will be asked to donate stem cells or bone marrow. 75% of donations in the US are done using stem cells.  A donor is given a medication to bump up the stem cells in their blood, which can take 2-5 days. Once the magic number is reached, a clinic will harvest the stem cells. They start an IV and draw the blood which goes into a machine that pulls only the stem cells, and returns the remaining blood to the donor. This takes about 4 hours. For a bone marrow harvest, they collect the cells under anesthesia; it takes about 2-3 hours. You do not have to take the medication prior to this procedure. They insert a needle to collect the cells from your hip area. You wear a bandage for 24 hours, and may experience some aching. Overall, a small price to pay to give someone life!

Be The Match:

Click here to read the other Causes series posts

No comments:

Post a Comment

Related Posts Plugin for WordPress, Blogger...