Hip Hip and No Hooray

I found out I had relapsed with cancer, Leukemia, around May 17, 2005. This was a big week for my family. The following Saturday, May 21, 2005, my sister was getting married. We didn’t want to spoil her big day so we kept my new cancer diagnosis a secret. She was married in Beaufort, NC at her aunt’s waterfront home, and it was simple but beautiful. We spent the entire weekend and had a really nice time with several things planned. I was still on crutches after my first fibular graft hip surgery with partial weight bearing on the operated leg. My hair had finally grown back, but it was very short. The morning of the wedding everyone woke and joined together at a local waterfront restaurant for breakfast. I remember eating and then the feeling came over me. I was trying to hold it together, but it was beyond my control. I got up as fast as I could (on crutches) and threw up over the boardwalk into the water. Ivey, my sister, came out behind me along with my trusty mom, and we did share the news with her. I know, it sounds terrible that we did that on her wedding day, but it was just a sign of things to come. LOL. It was not many years later they were divorced and she is now married to the perfect person for her.

For the next few weeks, I continued physical therapy. I had to get my leg and hip strong enough to carry myself after the next surgery. I also needed to work on my range of motion to have good movement in the joint. At the same time, I was going to my bone marrow transplant doctor to prepare for more chemotherapy. Another time line had to be worked out to plan when to start treatments for Leukemia after a major hip surgery. I do not remember when my second hip surgery was scheduled, but I think it was in June 2005. The surgery was done at Duke because the doctor who invented the surgery was at Duke, and only a few doctors who trained under him knew how to do it. Duke also had the equipment and operating room set up to perform the surgery. I had already had it once so I knew what to expect. Before the surgery I was given an epidural to numb the entire leg. Luckily, they gave me enough medicine through my IV first that I was out and did not know they were doing the epidural. When I woke up from this surgery it was one of the worst things I have experienced through this entire ordeal. During the surgery my blood pressure dropped so low they had to turn off ALL of my pain meds including the epidural. It was horrible. My leg had been cut open from my knee to my ankle and the bone removed along with blood vessels. My hip had been cut open, drilled out, and new bone pinned in place. I woke up to this unexpected pain and misery. On top of that I was so thirsty I could hardly swallow from dry mouth. I asked for at least ice chips and the nurse told me, “I can’t get it right now.” The ice machine was right across from my bed and she had enough time to get herself a cup of water. Later, I made it out of recovery and to my room. I was still in so much pain with no meds, and my mom was no where around. Finally, she and my boyfriend, at the time, came in and she was so upset. The nurse had given momma the wrong room number. They had been waiting about an hour, wondering where I was and what was going on, before someone gave them the correct room number. When mom came in, I shared with her what was going on and the pain I was having. She got the nurse to find out when I could get some pain meds. The nurse came in and talked with me. She couldn’t do anything at the time, but she did advise me to do deep breathing, and other pain-relieving techniques such as picturing myself on a beach. I had learned all about those in nursing school. There was not a calming beach wave or palm leaf breezing in the wind of Fiji soothing enough to take away the pain I was having. I had heard her tell me that so much that I wanted to shove her in a shark’s mouth for her to do her own deep breathing.

Finally, a few hours later I received pain meds and the nurse turned on my epidural. I was feeling much better. After a couple of days and in house physical therapy I was discharged. I had to be able to go up and down stairs and get in and out of a car on my own before they would release me, along with the medical aspect of the surgery being okay.

When I returned home my pain was not bad. I could not put any weight on my leg for about 6 or 8 weeks. That is hard to do. When the bones were healed enough to start applying weight, I was admitted into UNC to start chemotherapy. I did not go to physical therapy like I did with the first hip surgery, instead, I went straight back in to another hospital bed to begin chemotherapy. I did the same schedule of chemotherapy that I did in 2003. It was one week of several chemotherapy drugs given over different times. Again, when my immune system weakened, illnesses that had been lying in my body were wreaking havoc. One week of chemo would turn into a four week hospital stay fighting infections, nausea, vomiting, and other typical side effects you hear of from chemo. I would recover and be discharged to go home only to come back a couple of weeks later to start the process over again.

During this time, I was having to do the same precautions as with the COVID protocols, times 10 – mask wearing, staying away from crowds, no restaurants, eating only certain foods, definitely no buffets, and anything else to avoid infection. There were lots of infections and IV antibiotics that required hospital stays.  The hospital stays were more frequent than stays at home. We were in our own world focusing on my health, trying to stay alive, and not looking at anything going on around us.

What...Again!?!

In 2005, I was finally ready to return to college. My health had improved, I had fewer doctor appointments to attend, and my immune system was strong enough to be around other people. I wanted to complete my registered nurse degree so, in January of 2005, I became a student again.

At Sampson Community College they had requirements to return to the nursing program. Some students may fail a class, or some may leave for other reasons. When you return, you have to repeat the last nursing class you passed. For me, I completed the first year which was nursing 1 and 2. I was scheduled to start the 3rd nursing class when I found out I had Leukemia. Therefore, I had to retake the 2nd nursing class, which begins in January of each year.

Things were going well. I had a new perspective on the curriculum after being the patient for so long. While I was in nursing school the first time, I questioned some of the things we were learning wondering if I really needed to know that. When I became the patient at UNC, I realized – yes, I do. I did not understand the important role a nurse had in the hospital. A nurse does not just hand out medicine and do what a doctor asks, they almost act as the doctor when one is not around. The doctor usually comes around once a day and may work at the nurse’s station throughout the day, but the nurse is in and out of patients’ rooms all day. The nurse gets asked questions all day from their patients, and the nurse has to recognize when something is wrong. They have to be prepared to have answers and respond to various situations.

As the semester continued, I began having a pain in my hips. As the weeks continued the pain progressed in intensity until I was using crutches. Now I was going back and forth to Chapel Hill again for more doctor appointments. This time it was an orthopedic doctor. After multiple visits, x-rays, and MRI, the doctor concluded that I had Avascular Necrosis (AVN). AVN is when the blood flow through bone stops resulting in death of the bone tissue. This is a side effect of prednisone. Prednisone was the treatment for graft vs. host disease (GVHD). GVHD is when my body and the donor’s cells fight each other after transplant. A small amount is a good thing, but it can cause major problems if there is too much. Skin rashes and stomach issues were the most common sign of GVH for me. Then the next step would be skin biopsy, colonoscopy, or endoscope to confirm the GVHD. When I had GVH I had two options – take prednisone and risk the side effects or risk dying. I chose to take the prednisone which resulted in the bone in my hips and ankles to be damaged along with other things. It does take extreme amounts of prednisone to cause AVN. I took these large amounts for months at a time over several years. 

The fix for the joint pain and bone problems I was having was a hip replacement. I was almost 22 years old and a hip replacement was not the best option for someone that young. The doctors did not want to do a hip replacement because they were only good for about 20 years, and each time the replacement in the bone would have to be larger. My small bones couldn’t handle many hip replacements. So, in my case, the next best option was a fibular graft. Both hips were damaged. One was worse than the other so they chose to do the least damaged one first. It had a better chance of repair than the other.

On March 17, 2005 I was admitted to have surgery on the first hip. During this surgery the doctor removes your fibula. It is one of the two bones going from your knee to your ankle. He drilled some of my hip bone out and placed part of the fibula in the bone. They also took part of the bone, ground it up, and packed it into the portion that was drilled out of the hip bone. Then a pin was placed to hold it all in place. For weeks after I couldn’t put any weight on that leg. Then it was a gradual weight bearing for weeks. As soon as I was able to place all my weight on that leg, I was scheduled to have surgery on the second hip. I think it was about four months later.

While I was recovering from surgery on my first hip, I stayed enrolled in nursing school. They would record every class and send it with homework to me at home. I would complete the work and turn it in just like everyone else. I was in nursing school for the second attempt, I had hip surgery followed by lots of physical therapy, and I was still going to see my bone marrow transplant doctor every couple of months. The way the doctors tested to see the status of Leukemia is through a bone marrow biopsy. I think I was getting one done about every few months. It was time to get another one, but the doctor was waiting a little bit longer until my hip healed more. I have had so many bone marrow biopsies that I have lost count. By early May, the semester was over, but I was behind and still turning in work. My hip was healed enough for the pressure of a biopsy. I really did not want to get one at that time, but my doctor thought it was important.

It was deja vue. Could this be happening again? I don’t remember much about that time period, but I do remember the moment when I heard that phone ringing. I was home alone heading outside, and again, I had to answer it. I remember answering the phone in the kitchen. That was back when we still had a cord on the phone so I couldn’t go far once I answered. The caller on the phone was Debbie. She was the bone marrow transplant coordinator for my doctor. We love Debbie, and it was not unusual for her to call. This call, though, is not what I was expecting. She proceeded to tell me the results were back from my bone marrow biopsy, and it showed Leukemia cells. This time I knew what that meant, and I knew it was not good. Again, with one little phone ring my life changed fast.

I knew there was always the risk of my Leukemia coming back, but I never considered it. I never even thought about it. I was shocked! I was thinking if the first bone marrow transplant did not work, why will a second one? How many transplants can a person even have? Now, it was time to soldier ahead AGAIN.

If you have read my previous stories, you may remember I was diagnosed with Leukemia the first time on May 16, 2003. Now two years later the date was around May 17, 2005 and it was happening all over again. I have never thought of it until now, but I guess you could say I ghosted nursing school. After that day I did not read another chapter in a nursing book, do any more homework, or go back to the school. I don’t even remember talking to my teachers again.

At this point, I have been diagnosed with Leukemia, had a bone marrow transplant, recovered enough to return to college, had hip surgery, ghosted college, relapsed with Leukemia, still have another hip surgery scheduled, and I need chemo, radiation, and another bone marrow transplant. What a hand of cards for a 22-year-old. That was a lot to process. It was probably much harder for my mom, worrying about her child. For me, just like I have said before, I could not change what was happening so all I could do was what was needed for healing. God blessed me with my patience, nature of not worrying, and not getting anxious over things. This was not the time to worry. It was time for moving forward faithfully. Praying God would work another miracle in my life.

Transplant, Isolation, Apartment

Back in 2003 bone marrow transplant at UNC Chapel Hill was different than it is today. For one, they know a lot more now, but also, there is a new cancer hospital. Although the newer bone marrow transplant inpatient unit is not in the cancer hospital, it is in a new location and much larger. Most of the rules are the same as far as germs and risks for infection, but the facility has improved for the inpatient’s health and safety. When I had my transplant there were so many restrictions. Once I walked into the room on the first day, I was not allowed to leave the room until weeks after my transplant. In the new unit they have special ventilation that allows the patients to go outside of their rooms into the hall. I must say though, I have only stayed in the newer unit for other reasons, so I don’t know much about it during transplant.

The transplant unit was behind a closed door with a sink outside for everyone who entered to wash their hands. Hands also had to be washed at another sink before entering each patient’s room. My immune system was so weak, doctors would not let me even walk into the hall until my labs reached a certain number. Everything’ that was brought into my room had to be wiped off with alcohol, that included magazines, food, and the new pillow I had to take still in its plastic. All the transplant rooms had a refrigerator and a treadmill. The transplant rooms had lots of extra things because you are isolated in it for so long. It was critical that bacteria did not get to me, so as little interaction with others was best. During that time, I really did not have hardly any visitors. My dad and stepdad and sister would come, but if they had been around anyone sick, they were not allowed. I was so sick at times I did not want visitors.

The unit had a lot of “amenities” to keep you occupied and active. There was a recreational therapist who would come by and bring anything you wanted. She would play cards or games, bring craft supplies, weights, a computer, even a Nintendo Wii. The treadmill in my room did not get used much. They would push me to walk on it, but I was so week I didn’t make myself do it. I am still paying for it today. My muscles today are still very weak, but there is a lot more to my story that has contributed to this weakness.

Days then weeks went by and my mom and I were still in the hospital. Every few days I continued to get blood and platelet transfusions because my marrow was not making it efficiently. Finally, my cells began to produce. My red blood cells were going up. My neutrophils, which show immunity, were going up, and I was able to walk out of my room. But you know those masks so many people are having to wear now? Those that so many do not like, think they do not work, or can’t breathe with one. Well, I had to wear one just to walk into the hall of the bone marrow transplant unit. When we were finally released to leave, I had to were this mask everywhere, even outside. My immune system after transplant was so weak that being outside around construction sites or dirt was a risk for bacteria. My house is surrounded by fields so a mask outside at my house was mandatory. We couldn’t even open the windows in the house without me wearing a mask. When you have been through what I had, and knew the effects of getting an infection, you did everything you had to do to prevent it. That is why wearing a mask and not being around crowds for COVID is no big deal for me.

I was finally able to be discharged around mid November, and we still could not go home. We moved into an apartment in Durham for the remainder of the 100 day process. I had to be within 10 minutes of the hospital. Everyday momma took me to UNC for lab work and see the doctor. As things improved, we were able to only have three day a week appointments. It seemed like for every return appointment I was getting some type of transfusion, IV med, or shot. I did pretty good while In the hospital and got worse during the time period I was in the apartment. I did not have an appetite. I remember eating a lot of chicken and rice. I had infections and had to give myself IV antibiotics. Nausea and vomiting were often occurrences. Through it all, mom was doing her best to make me feel better. Whatever I felt like I could eat she would cook or go get. We would go to the gym at the apartment when I felt like going or walk the sidewalks. My dad would come visit and bring whatever I wanted. When I was in the hospital, he would always bring me food when he came. Mom would usually leave when he came so she could have a break and do something for herself. Daddy would get me out too. We would ride around Jordan Lake and walk down to the water. Me and momma and daddy did all kinds of things to stay occupied, but in the car, we always had a basin and towels.

Eventually after about 4 months in the apartment, I was approved to go home. The 100 days had turned into almost twice that. I think at this time it was early April 2004 and I was so glad to be home.

The remainder of the year I continued going to Chapel Hill for appointments two or three times per week. I would get an infection here and there spending a few weeks at a time in the hospital. I do not remember a lot of it, but I know I made it through 2003 and 2004. People say you are so strong, or you are the strongest person I know. I am no stronger than anyone else. You never know how strong you are until you are forced to be strong. I just do what I have to do to survive.

Transplant Time, 2003

The time had come, my mom and I packed our bags, and were off to UNC hospital. On September 23, 2003 I was admitted to have a final round of chemotherapy and then a bone marrow transplant. The doctor tells you up front that a bone marrow transplant is a 100-day process. Part of those days are spent in the hospital, while the remainder of those days are spent in an apartment within 10 miles of the hospital. The first week was chemotherapy. I think I had 3 or 4 different chemo medications administered intravenously. They all ran at different times and for different amounts of time. Some were once a day and some were every 3 or 4 hours. But all together, I was getting chemo almost 24 hours a day for 7 days.

The chemotherapy administered before bone marrow transplant is extremely strong. With other cancers the doctors want the chemo to kill your cells, but then have all healthy cells return. With a bone marrow transplant, they do not want your cells to come back. The purpose is to replace your cells with healthy cells from the donor. There was a particular lab value the doctors watched. When that number reached zero, my body was ready for the donor cells. It took a little while after the last chemotherapy treatment for my cells to get to zero. During that time my marrow was not making enough blood, so I was getting blood and platelet transfusions every few days.

This time period after chemotherapy was similar to the times before. My cell count and immunity would decrease, and I would get infections and sick from different things that were lying inside my body. In addition to all of this I was isolated inside my hospital room. I was expected to walk on the treadmill beside my bed, but I felt too bad. I see now that I should have pushed myself even if it was for only five minutes, because I still have weak muscles. I didn’t have any visitors except my dad and other immediate family members. Sometimes a visitor would come and mom would go out of the transplant unit to see them. During this time, I couldn’t eat certain foods. I couldn’t even brush my teeth because of the risk of bleeding and infection. I had to use one of those sponges on, what looked like, a sucker stick.

While we were waiting for the chemo to do its job, coordinators were working on getting the donor ready for donating. I didn’t know anything that was going on with that process. All I new was my actual transplant was scheduled for Oct 20, 2003. It takes a lot of coordinating and work to get to this date. Doctors have to see how I am reacting to the chemo, figure out a time line for when my cell count will be at zero, get the donors timeline for cell building and extraction, then transportation for the marrow to UNC. My donor was in Michigan, and the marrow had to be collected and flown to Raleigh. Someone from UNC had to get the cells from the airport and get them to UNC. Thankfully I didn’t have to worry about any of that. All I had to do was receive the meds. 

The big day had arrived. My parents were there, both sets, and we were waiting for the arrival of my new bone marrow. The hours in the day were slowly passing and the cells had not arrived. I received fresh cells that had to be given within a certain time frame. We all were getting anxious wondering how much longer the wait would be. My mom was staying the night like always, but my dad was going back home afterwards. Midnight was approaching, and still nothing. I think I was more concerned about my daddy driving home tired from Chapel Hill. Finally, shortly after midnight, the doctor and nurse came in with my new cells.

The actual transplant is very uneventful. There are risks involved, just like everything in life. You could have an anaphylactic reaction or it simply may not work. Fortunately, I did not have any reactions. Unknown to most, having a bone marrow transplant is not a surgical procedure. Most people hear transplant and think surgery. With organ transplants that is true, but bone marrow is a blood product and is given like a blood transfusion. The marrow was in an IV bag that the nurse attached to the line in my chest, and on October 21, 2003, I had a bone marrow transplant.

I am so grateful and thankful for my donor, Blake, and all the doctors and nurses. They are the reason I am alive today. God was working his miracle putting all of this in place. Never discount what can be done in your life. You may hit rock bottom for whatever reason, or be at death’s door, but you can get through anything. Be positive, have faith, and trust in God! He will never give you more than you can handle.