Be A Match

The first four months of treatment were rough. All the typical side effects you hear about from cancer were part of my daily routine. I was in the hospital for most of that time so there was always a basin, toilet, momma, nurse, doctor, and meds close by. It was tough, but I knew it was part of the journey. I did not complain or whine, because it definitely wouldn’t change anything. Although everyday wasn’t bad, they had their moments. I didn’t think about what was happening, I just let it happen, and moved on to the next part of the day. There was going to be an end to all the sickness and hospital stays, I just had to take it day by day to get there.

After I found out I needed a bone marrow transplant, I don’t think I ever considered the fact that a donor may not be found. I was told it could take weeks or months, and it was also possible that a match may not be found. Finding a donor is like looking a needle in a haystack. There are lots of criteria required to be a donor. Surprisingly, blood type is not one of them. Markers within the cells of the marrow must match. Bone marrow patients can have a transplant from a related donor, unrelated donor, or use their own cells. At the time UNC was starting to do transplants with a patient’s own cells, but it wasn’t common. My doctor knew another donor would be best for me because of the translocation of chromosomes that I had. Siblings can be the best match, but since I did not have a sibling from the same mom and dad, I had to have an unrelated donor.

I continued on everyday, and friends and family would visit throughout my stay. It was nice when someone would come by. It would give me and momma someone else to talk to, plus break up our day some. Staying in the hospital for so long was just as hard on my mom. She stayed every minute of every day I was there. Visitors were a welcome sight for her. Another thing that got me through my hospital stay was my nursing class. They brought me a huge basket with individually wrapped presents. The rule was for me to open one present each day. Giving me those gifts was so kind. They do not know how much it meant to me. I did not get joy and excitement from receiving a material object, it was the thoughtfulness and joy of having something to look forward to each day.  It was very difficult not to open them all at once, but I knew it was worth it. The gift I chose to open each day was no mistake or luck. Early on, I opened a pair of bedroom shoes. I used them everyday keeping them at my bedside. One morning I woke up nauseated and very quickly, with no time to grab a basin, I vomited off the side of my bed. Where do you think it went? Yes, all over my bedroom shoes. Later that morning I selected a gift to open. What do you think the present was? It was another pair of bedroom shoes.

While all of this was going on, the search for a donor was happening in the background. I did not think about it much, but the doctor and transplant coordinator would keep me updated. To be placed on the list to become a bone marrow transplant donor, it is very simple. At any time if you see someone or an organization holding a drive, all you do is get a mouth swab. You can also join the national bone marrow registry yourself. The information needed is collected from the mouth swab and is placed into the national registry. When a patient needs a donor, the hospital can search the database and hopefully find them a match. If a match is found then it is a process for the donor to build up their cells with shots, and then the cells are extracted. It is not necessarily a surgical procedure to extract the marrow.

Being a donor is most definitely a life saving generous act of kindness. Leukemia and bone marrow transplants are becoming much more common. Other cancers and diseases also use bone marrow transplants as a treatment option. You could be that person to save someone’s life, or your friend or relative may be the one that needs a donor to save their life.

Finally, I received the good news a match had been found. All we were allowed to know about the donor was that he was a 22-year-old male. We had to wait one year and, if he agreed, we could exchange information. After one year had passed, he agreed to be known. I learned he was from Saginaw, Michigan. We emailed back and forth, sent letters and pictures, and still stay in contact. Last year he gave me exciting news that he had moved to South Carolina. We had a date set to meet, but his daughter got COVID at school, passed it to him, and was in quarantine the day we were scheduled to meet. We are still working on a time to get together and I can’t wait. You would not be reading my story now if it were not for Blake. I can never thank him enough. God is good!

UNC Resort

Have you ever traveled to UNC resort? UNC resort is an all-inclusive street front resort nestled within the trees and buildings of a quaint college town. It is conveniently located within walking distance of all the major attractions such as Franklin Street, Kenan Stadium, the Planetarium, and much more. Upon arrival, guests are greeted curbside by the kind staff who escort you to check-in, and take you to your guest room if needed. Accommodations include cozy guest rooms with daily linen change and maid service, spacious bathrooms with walk in showers, outdoor oasis, fine dining, and ample parking. All guest rooms have exquisite views of the street, other buildings, and my favorite, rooftops speckled with HVAC units. All guests receive a gift basket that include a basin, toothbrush, toothpaste, lotion, body wash, mints, and more. The multiple restaurants located at UNC resort offer cuisine from around the world, sure to excite all tastebuds. The UNC resort is comprised of multiple towers connected by long winding halls and secret passages. One exciting amenity of this resort is the surprise activities their staff schedule for you daily. Guests are personally transported to these activities such as MRI, x-ray, and other tests on their exclusive transportation known only to these facilities as a stretcher or wheelchair. VIP guests staying in the penthouse rooms of the bone marrow transplant have refrigerators, gaming systems, gym, activity room, masseuse, live music, and more especially for them. No need to carry cash or credit card during your stay, because they have one-of-a-kind wrist bracelets that can be scanned to pay for all of your purchases.

Doesn’t this sound like a place you would love to visit? It is amazing how wording can make something not so good sound fantastic. I was privileged to spend lots of time in this fancy resort that is more commonly known as the University of North Carolina Hospital. Me and my momma now refer to it as the UNC spa. On the night before I have an appointment I will ask her, “Are you excited to go to the UNC spa tomorrow?” Hey, it’s almost like a spa, they have massage chairs for caregivers she can use while I am in an appointment or inpatient.

In 2003 through 2006 I spent more time in the hospital than at home. My dad used to get me a calendar from his work that was poster size. The calendar came with a dry erase marker with space to write on each day. I hung it on the back of my bedroom door and documented every day I was in the hospital. At the end of the year, I counted all the days at UNC and it added up to more days in the hospital, way more. I would roll it up at the end of the year, store it, and start on a new calendar the following year. I kept them for years until the dry erase marker had disappeared. During this time my mom stayed every single night, day, and attended every appointment. She still does. My mom is a trooper. She kept me company, did way too much for me, was my nurse, doctor, and advocate, plus so much more. She neglected herself to make sure I was okay and had anything I needed to be safe and comfortable.

Every patient needs an advocate with them every step of the way. A patient needs someone to listen to doctors and watch everything that is happening around them. My mom was my advocate. She is the best momma ever. She has saved my life herself by seeing mistakes someone else was making.

After my initial diagnosis, the plan for me was to have one week of treatments as an inpatient, go home for 3 or 4 weeks, then return for another week of chemotherapy. The doctor told me it would wipe out my immune system. Any virus, bacteria, or sickness that was inside my body could rear its ugly head. Well, that did not take long, and I was right back in the hospital the next week. This cycle continued with each stay lasting a little longer all the way through September 2003. If you read my blog titled The Day I Was Diagnosed, you may remember I was diagnosed on May 16, 2003. Those months added up to months of feeling horrible, having lots of medical tests, bone marrow biopsies, and to much medical jargon to process. I was just taking each day as it came, going to sleep, and praying for another day.

Researchers and doctors in a lab are so knowledgeable. The things they can figure out and use to treat a patient is unbelievable. Leukemia has different types such as Lymphoblastic and Myeloid. Within those two types there is Acute and Chronic Leukemia. There is a lot more to it, but for this purpose all we need to know is I was diagnosed with Acute Myeloid Leukemia (AML). Acute forms are rapidly progressing and require treatment immediately. Within the AML there can be defects in chromosomes that make each case unique. After a couple of months, several bone marrow biopsies, and lots of lab work, doctors determined the type of Leukemia I had would return if I did not have a bone marrow transplant. I had a translocation of my #6 and #11 chromosomes that chemotherapy alone would not cure. Therefore, the treatment plan was for me to have a bone marrow transplant. It was not a difficult decision for me to go forward with the transplant, because the alternative was not very enticing. So, on September 23rd of 2003 I was admitted to start the process.

The Day I Was Diagnosed

I remember the series of days like it was yesterday. The first of which was Thursday, May 15, 2003.  I was in nursing school, we had ended the first year, and the next semester was to begin on Wednesday, May 21, 2003. I had a sore throat that looked terrible. My Mom and neighbor kept telling me I needed to go to the doctor. I was only 20 at the time and I thought I was fine, it would get better soon. By the time the Wednesday before school was to start back rolled around, my mom and neighbor’s persistence worked. I realized if I was sick when nursing school started I would not be able to go to clinicals at the hospital, and my grade would be docked. Willingly, I made an appointment for the next day to go to my family physician.

On Thursday May 15, 2003, as I was leaving for my appointment, my Mom, as any mom would do, reenforced for me to tell the doctor about the bruising I had on my arms. “Ok momma”, I blurted back. I was young and healthy. I had never been sick. Why would it ever cross my mind that something could be wrong?

I can picture myself sitting at the end of the examination table on that crackly paper in the doctor’s office. The nurse had already swabbed my throat. The doctor came in and we began to talk and discuss the symptoms I was having. Minding my wonderful momma, I mentioned that I had bruises all over my arms and I did not know how I got them. I also had these tiny purple spots in patches on my neck. She said, “it is probably nothing, but we will do blood work anyway.” I can see her walking to the door as she said it, opened the door and walked out. I said, “okay”. The nurse, Kelly B., drew my blood, I left, and didn’t think much else about it the rest of the day.

By now it is Friday morning, May 16, 2003, and my ringing phone wakes me up. My mom has already left for work so I get up to answer it. To my surprise, it is the doctor. She begins to tell me that my blood work suggested something could be going on. She listed several things it could be and said I needed to go to UNC or Duke immediately. All I could think about was nursing school starting back and the homework I had to complete in 5 days. We hang up and my mom calls right away. She is on the way home in a panic. The doctor was on hold waiting for her when she got to work. I can only imagine that as a mom, she immediately thought the worst. For me, not so much, I took my backpack and books with me to do my homework while I was in the hospital. The doctor did tell me that had strep throat. I had gotten it from another student in my class. If it was not for that, there is no telling when I would have gone to the doctor. It could have been too late. Getting strep throat at that time was a blessing.

In a couple of hours time we had spoken with several doctors and were off to UNC. My doctor said she went to school with an excellent hematologist and he was at UNC. We had no idea where to go so Chapel Hill it was. I had a crowd in my hospital room. It was my mom and her husband, my dad and his wife, my boyfriend at the time, and lots of doctors and nurses. At hospitals like UNC and Duke, you do not see one doctor for a particular problem. You see a team of doctors that specialize in a particular subject. The team of doctors asked me lots of questions such as symptoms, family medical history, life questions, daily activity, and random stuff. They poked and prodded and mashed everything from my head to my toes. When it was all done the doctor said he needed to do a bone marrow biopsy to rule out certain things. Ok, whatever you need to do to find out what is going on. So, right then and there in my hospital bed, I role over, and the doctor does a bone marrow biopsy.

A short time passes as the results are being determined. My family and I sit in the room waiting and talking to pass the time. Still, I am not worried, but I am sure everyone else in the room is. Not long after the doctor returns with the results. He took the marrow to the lab and looked at it under the microscope himself. He sat down in a chair beside me and said – you have Leukemia. What!? Leukemia! I didn’t know exactly what Leukemia was, but I knew it wasn’t good.  All of those thoughts were running through my head. “You have cancer”, he said. My family and I looking around at each other dumbfounded. The doctor said I needed to get chemotherapy and I would need a line placed in my chest to get the medications. By Saturday afternoon, May 17, 2003, I had a Hickman Central Line placed in my chest, and the first of seven days of chemotherapy had been completed.

What a whirlwind of 3 days. Never could I have imagined this would happen. I guess being a young 20-year-old in good health was mentally to my advantage. Or, maybe it was my nature. I never worried, I never thought I was going to die, and I took everything as it came. Needless to say, I sent my backpack home with my family, and that semester of nursing school was a no go.  It is amazing how one day can change the rest of your life. One decision, whether good or bad, can also change your life. Know that whether you have a diagnosis of cancer like me, or you make a bad decision in your life, it is not the END of your life. You have the power to make it what you want. I trusted in God, let him take the wheel, and followed him to where I am today. You can make that choice too!   

Welcome to Jennifer’s Blog: My View as a Sightless Survivor.

Hello everyone, and welcome to Jennifer’s Blog. Who is Jennifer, and what does sightless survivor mean? Is that what you were thinking? Well, I am, in a nutshell, a cancer survivor that lost most of my vision after a rare complication. But, don’t read this and think – Oh no, am I going to go blind if I get cancer? – because, I am the only “lucky” one this has ever happened to.

Through my journey I have learned a lot and been through even more. When your life is at stake you quickly realize there is so much that is not important. You also learn that the smallest things in life are the best. Do you want the biggest house on the block, the nicest car in the parking lot, or the most popular brand of clothes on your back? Yeah, that is not important. Have you ever had a disagreement with a friend or family member and marked them off your list forever? That minor feud that you may think is earth shattering is not really that big of a deal. I have never feuded with anyone to the point that I would never speak to them again, but I have seen it with others. It is not worth it! They could be gone the next day like I witnessed with other cancer patients...and, almost happened to me. No matter what disagreements you have, it is not worth losing the love of friends, especially family.  These are just a couple of tidbits I have come to realize on my journey.

Not only have I learned so much, I have been through a LOT. All cancer patients go through things that other people just do not understand, and everyone’s journey is their own journey. Two people can be diagnosed with the same exact diagnosis, but yet their journeys can be so different. My story deals with cancer and all the side effects and complications that followed. I could only imagine that other illnesses, accidents, trauma, and heart break all have the same effects on a person - you learn from everything and everyone’s situation is their own situation. You will probably hear me say this again.

I have so much to share, funny stories, God winks, insights, and so much more. Stay tuned, keep reading and watching, and maybe you and I can learn something from this and be inspired.