Stem Cell Transplant aka Bone Marrow Transplant
By the time transplant time hit, I was already feeling somewhat weak from the VDT PACE, ICU visit, and broken back. They were able to give me kyphoplasty on 5 vertebrae at a time, but could do no more than 5 at one time. I believe I had a total of 8 vertebrae that had fractured. They injected cement into the vertebrae to repair the cracks. This is why I still have chronic back problems today. My mom and I were still staying in the hospital for the first transplant on October 26, 2020. I was happy to have my mom there with me! For the transplant, they administer a high dose of melphalan, a very powerful chemical agent derived from mustard gas in World War 1. The actual transplant is painless and uneventful. It is the recovery process that is hard. It can take up to a YEAR to feel fully recovered. During the transplant, they had me chew on ice constantly before, during, and after the melphalan infusion to prevent mouth and tongue sores. I remember there was an awful taste in my mouth while getting the infusion. Afterward, the whole room as well as my body reeked of the smell of creamed corn, a well known weird side effect in the myeloma community! The melphalan kills everything, healthy cells and cancerous cells, and destroys the bone marrow. They then infuse your own healthy stem cells back into the body to help the bone marrow regenerate the healthy cells that have been destroyed. The day of your transplant is called Day 0. It is also called your “rebirthday” as your immune system is essentially erased and you begin to build a new one. The day of transplant I felt ok. The following days and weeks were extremely difficult. I fought daily with a very long list of side effects. I developed some mouth sores, extreme diarrhea, constant nausea, trembling, fevers, zero appetite, high heart rate upon standing to the point of fainting, and overwhelming fatigue. I lost every hair on my entire body, including eyelashes, legs, eyebrows, etc. Everything smelled awful to me and every scent was overwhelming. My entire body felt bruised. My skin hurt like someone had punched me all over. I was sleeping like a newborn. I would be watching TV and fall asleep for hours. I was only awake for a short time each day. I was so weak and often had a fever that I needed assistance to do simple tasks like changing my clothes, doing my hair, etc My mom came along as my caretaker and did an excellent job administering meds, making me eat, making me comfortable, and trying to keep my spirits up. I can’t quite describe the lack of energy. I was too exhausted to follow a TV show, talk on the phone, do a crossword, etc. I had brought a lot of activities to do while bedridden but I was too exhausted to do any of them. I made sure to call home every night to read to Charlotte but found even that simple task to be completely draining. I had once been in very good shape and athletic but found that I frequently needed a wheelchair just to make it to infusion each day. If there was someone in line in front of me at infusion, I had to find a seat to wait because if I stood too long, I was in danger of passing out. At night, I would sweat and soak through 5-6 pairs of clothes. My mom would come in 5-6 times a night to lay down fresh beach towels and help me change. She was washing all of my clothes and bedding daily in the hotel laundry room. Each day, she would wake me up in the morning, force me to eat half a piece of toast and hope I could keep it down, and then drive me to the hospital. Depending on how I felt and if I had a fever or not, I would either slowly walk to infusion or call for a wheelchair. I would spend 5-6 hours in infusion each day for weeks. I would get blood, platelets, potassium, fluids, and whatever else I needed. Then I would go back to the hotel. I would sleep, try to walk a little if I could, force down an ensure, call the girls, and go to bed. I did this for weeks. The worst part by far was not being around my babies! Being in such physical despair didn’t help. When my counts recovered enough that they were sure I was out of the danger zone for infection, they allowed me to go back home. Being home felt like I had won the lottery. By the time I got home, I could walk a little more and had a bit more stamina but was still taking a ton of naps and was forcing myself to eat. I was super thin and frail. The constant fevers had subsided but I still had lots of trembling and stomach issues. My body still ached and hurt all over. I had about 3 weeks at home before I had to return to do another transplant!
More Chemo and a Broken Back
After 2 ½ weeks home, I returned to Arkansas for more fun. Upon arrival, they drew labs and checked my numbers. After VDT-PACE and 2 weeks home, my numbers had started INCREASING again. This was not a good sign. The doctor was also taken aback. The expectation was that the numbers would continue to fall slowly until transplant. The graph was showing the opposite- a rapid increase. Now we weren’t sure really what to expect. We were going to do another round of VDT-PACE to try to get the numbers lower for transplant. This was the same regimen that sent me by ambulance to the ICU last time so obviously I was a little nervous about getting all of it again! Again, they hooked me up to the 24 hour chemo bag that would pump all of the seven different drugs into my body day and night. The bag at first appeared very non-threatening. I grew to hate that bag, especially the sound of the pump every 5 seconds all.night.long. It was like listening to a smoke detector beep. I was spending 5-6 hours each day in infusion getting all the things- blood, platelets, potassium, fluid, and growth shots. In the days leading up to transplant, I began having extreme back pain. The slightest movement would send shooting pain up and down my entire spine. I had to sleep on my back without moving a muscle or I would wake in screaming pain. I was using a walker to get to and from the bathroom in the hotel room. Riding in the car was unbearable. I had to brace myself in the car with my arms because going over any small bump would send the pain everywhere. Myeloma is a blood cancer but it is also considered a cancer of the bone marrow. It produces osteoclasts which begin breaking down bone uncontrollably. When the disease is active, it weakens and attacks the bones and forms lesions. Now that the tumors were shrinking from the heavy chemo cocktail, my weak vertebrae had nothing to rest on. They began fracturing one after another. Never in my life have I experienced such pain and moved so slowly. They rushed me in for scans which showed 7 or so fractured vertebrae. They said they could do kyphoplasty, but they could only fix 5 at a time. They would do 5 and then do the others at a later date. Kyphoplasty involves injecting bone cement into the vertebral body to repair the fractures. The pain became so intense that I could no longer take it and needed to be moved inpatient so they could control the pain. Being moved to inpatient would also mean my stem cell transplant would need to be done inpatient. It was still the year of covid so they weren’t letting any visitors into the hospital. My mom was not going to accept that. She was going to make sure someone let her in to be there with me during the transplant! They made a deal with her that she could be there, but once she was in the room with me, there would be no leaving. She would not be able to leave the room for any reason- to go use a bathroom, get snacks, get water, pick something up, nothing. We also had no idea how long to expect to be in that room. It would all depend how long it took me to recover from the transplant. So, my mom became a harbored fugitive in my hospital room. Doctors would come in and she would be hanging out on the bench which she made into her bed. They never expected her to be there because of the “no visitors” rule. We didn’t have access to the washers and dryers since she couldn’t leave the room so she would hand wash our clothes in the bathroom sink with Dawn soap she brought and hang them around the room to dry on any hook or surface she could find. This is where it got a little comical. Doctors would come in to speak with me and there would be underwear, t-shirts, pants hanging EVERYWHERE around the room. She was also constantly washing because I was suffering from all of the chemo and sweating uncontrollably every night as well as having some crazy GI issues (TMI!). We had a LOT to wash! This hospital stay was another miserable experience. I was on round the clock pain meds and a plethora of pills used to control side effects from the chemo. There was one day I woke up and asked my mom what time it was and she told me it was 6:30 pm! I was on drugs upon drugs upon drugs. I have never taken so many pills at one time in my life. Some of them, we had to handle with gloves as they are too toxic to be handled with bare hands.
It’s (not) Just Hair
The day I returned home was September 27th, three days after Hayden’s first birthday, which I was very sad to have missed. We were going to do her little birthday party with her smash cake first thing but my head hurt so badly from all the hair still clinging to it. I never expected it would hurt so bad! My scalp actually ached from the hair hanging off of it. We went out back and Chris and Charlotte worked together to shave it off. The fact that it hurt so bad made it a welcome experience. It felt SO much better when it was all gone. I was glad Charlotte could be apart of it though. That made it a little less shocking for her. Charlotte seemed happy the whole time and even said it looked really good! I tried to stay happy too. Looking in the mirror after that was the toughest part. It was shocking every time from there on out. My eyebrows and eyelashes would be next. People say that it is “just hair” and it will grow back, which is true. However, it takes about 3 years to grow back to a normal length. Thinking about the timeline they had given me for my life, I assumed I would never really see my hair again (at the length I like it). This made it harder to get over. I thought I would never really see “me” again. This was now the “me” I would take to the grave. Perhaps the biggest debacle was when a lady came to my hospital room one day and said she could get me a free wig from the American Cancer Society. She asked me to see a picture of what my hair used to look like. I showed her several. She returned later with the most horrendous Karen wig I have ever seen. I was confused how she got that out of the pictures I showed her. The color I guess was similar but other than that, it shared no other resemblance to my old hair. I put it on and didn’t know whether to laugh or cry, both reactions which would have been rude. So I politely thanked her and shoved it in my bag, never to be seen again (except to have a good laugh with my friends). I wore wigs out occasionally, but they were all extremely hot and most of them looked very fake. My girl KG hooked me up with the best wigs I have ever seen. It made me so happy to put them on and immediately feel like the old me. Part of the desire to wear a wig was not for vanity, but to not feel “sick.” Looking in the mirror and seeing what looked to be the old me made me feel more like the old me. Looking in the mirror and seeing a bald, frail, cancer patient made me feel like a bald, frail, cancer patient. On hot days, I would rock my bald head. Several times when bald in public, I was referred to as a man, which was not fun. I also got many stares with the bald head, especially when I was out with the kids. I could just feel everyone’s pity. Over time, I became more comfortable with it and didn’t really care to hide it as much. When it grew into a buzz cut, I was called a man some more and got many inquiries about my natural color (ha!) and when it was down to my ear, I was eager to get extensions. It looked like a mullet for a little bit because I insisted on getting them when my hair was still too short but they started to look a bit more natural after it grew out a bit more. My hairdresser really worked wonders for me and I will forever be grateful for her!
Stem Cell Collection
I spent about a week in the ICU before being moved to the cancer floor to recover further. I remember feeling so, so relieved to be out of the ICU. In the ICU, I had so many lines coming out of everywhere that I couldn’t sleep. I had to use the bathroom under supervision right next to the bed. There were no windows, and it was incredibly busy and noisy. Due to covid, the place was overrun and super chaotic. On the cancer floor, I had a big window to see outside, a private bathroom, and it was very quiet and peaceful. I remember being so grateful and absurdly happy about having these luxuries back. I was also thrilled to have a real shower with soap and water after a week of being wiped down with wipes. In the ICU, they tested for everything under the sun and couldn’t find any source of infection so they pulled my central line, thinking it must have caused the septic episode. The nurses on the cancer floor were upset about this because they needed it. They had someone come in and insert a line that went through my forearm, up to my neck, and down to my heart. This was during the time of covid so I wasn’t allowed to have any visitors, including my mom. My mom hung out at our hotel in Arkansas but checked in frequently over the phone. It was very lonely. I was still in a very depressed state as I was still reeling from diagnosis just weeks before. One of the nurses in particular, Zoeie, would make a point just to come in and look at pictures of the girls and chat for a few minutes when administering medicine. I would look forward to her visits. I began having my daily shots of filgrastim to prepare for stem cell collection. This produces more stem cells and releases them into the blood stream. I spent another 7 days on the cancer floor. I was beginning to feel extremely weak from the chemo. I was encouraged to get up and walk a few times a day to keep up my strength. I remember taking my first shower and it felt like I had run a marathon afterward. I was wiped. My daily walk became a daunting task. My hair at this point was beginning to come out in clumps. I really wanted to do the shaving at home so Charlotte could be involved. I didn’t want to return home bald so I stuck it in a braid and stopped brushing it, washing it, touching it, and messing with it in the hopes it would stay on my head long enough to make it home. After being discharged from the hospital, I went straight to the operating room to get my central line put it in for collection. This line was huge as they need a big tube to go in your neck to collect the stem cells. They put it in in the operating room but you are fully awake for the process. I actually had no idea I would be going to the operating room to have this done but I had kind of become apathetic to what was happening next with the whole process. I felt like my whole existence consisted of being stuck with needles 24/7, being pumped with toxic drugs constantly, and going from one hospital waiting room to the next. To put the tube in, they numb the area but it is still an unsettling feeling because you can feel it going into your chest. It felt like my heart was fluttering when they put it in. Sleeping is very difficult after it is put in because your whole neck and chest area are extremely sore. You can’t sleep on it either so your only choice is to sleep on your back, without movement. When it was finally time for collection, they hooked up the catheter on the line to the apheresis machine. You really don’t feel anything during collection. It is mostly just a very long and boring day. My doctor in Arkansas wanted 21 million stem cells. Most facilities shoot for around 4 million. This is another example of UAMS shooting for the moon. You have 3-4 days to collect what you need. They collect whatever they are able to collect. There is no way to prepare for it or ensure your body will be able to get the required amount. Therefore, I was nervous about being able to get what they needed. The results of the first day were 3 million. This was concerning because the doctor said this was pretty low and the first day typically yields the biggest numbers and then they taper off. I began to wallow in my misery again. Could things go right just for once? I left the collection center and went upstairs to infusion to get my blood numbers and more growth shots. Day 2 yielded 5 million. The doctor said this was a little better but he was still worried about meeting the goal of 21 million. Here is where UAMS does what they do best- fight for a plan B. They spent hours on the phone with my insurance to try to approve a shot that is known for increasing collection numbers. They wouldn’t just accept that I may not reach the goal. They were going to make it happen at all costs. It is typically hard to get this shot approved so they had to go to bat for me to get it. They were finally able to get it approved toward the end of day 2. I went up to infusion to get the shot to prepare for my last day. This shot is known to cause some serious bone pain but I really didn’t know what I was in for. That night, I awoke in tremendous pain and told my mom my ribs were broken. It was difficult to move in any direction and even breathe. The next day they had to wheel me into collection in a wheelchair because of the pain. I told the doctor repeatedly my ribs were broken but he assured me it was from the shot. That day, I was on pins and needles waiting for the final result. What would happen if I couldn’t get the 21 million? Would I be able to have a transplant? Without one, it was certain death in the state I was in. He came in at the end of the day and I held my breath. He started with “You’re not going to believe this” and my heart sunk. I thought the whole thing was a fail. Then he followed with “We collected 19 million stem cells today.” He went on to say he was shocked. He said they never see a spike that large even with the extra growth shot. He said it was unexplainable. I was so relieved I cried. It was the first time since everything had happened that things went RIGHT. On top of that, I was finally able to go home for a couple weeks and see my babies. I had been away for this first round for a total of 24 days. I would go home for 2 weeks and return for another month.
First Taste of Chemo=First (but not last) Ambulance Ride
They set me up for the induction chemo by sending me to the operating room to get a central line put in. This was an interesting little procedure. I was awake the whole time. They numb the area with lidocaine and make an incision at the top of your chest. They insert a line that goes down near your heart. It was a weird sensation being able to feel it going in. I had some pain after the procedure as your body has to get used to this small tube in it. It was mainly a sore feeling. Next, it was time for the little black bag. The way UAMS does induction chemo is they give you a nuclear bomb chemo cocktail called VDT-PACE. Each letter stands for a type of chemo. I went in and they packed up a little black bag that I would wear for a week straight. The chemo would be pumped into my body 24/7. I would sleep with it, bathe with it, etc. The bag was hooked up to me on a Monday and would be detached on Friday. Each day that week, I would go to infusion and they would swap out the empty bags inside and give me full ones. I remember I HATED sleeping with that bag. The sound of the pump was constant and would keep me up at night. I can still hear it to this day. I also could only take shallow baths. Throughout the week, I kept waiting to feel awful but I felt pretty normal. I was actually starting to think I was a pretty tough cookie to have all this chemo and still be able to function so well! I really thought I was just a star cancer patient at this point. But then everything came crashing down and I had a very rude awakening. It was Friday and I had just gotten off the phone with my high school girls, boasting to them about how I had survived the chemo bag with little side effects. After hanging up with them, I started feeling a bit dizzy and very fatigued. I turned in early. I woke up in the middle of the night with a raging fever. It kept getting higher and higher to the point I was no longer coherent or able to walk. My mom called the emergency number and they told her to get me to infusion as soon as they opened. My mom wheeled me out to the car in a wheelchair we brought with us and got me to the cancer institute. She wasn’t able to come inside (covid) so she handed me off and they took me up to infusion in a wheelchair. They rushed me back and took my vitals. My fever was raging and my blood pressure was plummeting. All I remember was one of my favorite nurses leaning over and saying “Corinne, I don’t want you to be alarmed, but we have called an ambulance and they are on their way to get you to the hospital.” A few minutes later, the paramedics arrived, loaded me up on a stretcher, and rolled me out to the ambulance. All I remember from the ambulance ride is they kept asking me questions. In my mind I was answering but they kept saying I was “unresponsive.” They declared me as septic and rolled me into the hospital. There were a ton of people around me on the table and I was super cold and couldn’t stop shaking. They were able to stabilize me and admitted me to the ICU.
UAMS
Somehow, UAMS worked it out with my insurance to come out and get treatment there. They called me on a Friday and told me they wanted me there on a Monday. My parents watched the girls, Chris closed down the shop for the following week, and we headed out the very next day. Due to covid, Chris was not able to enter the hospital with me for all of the testing but they made an exception for him to accompany me for the meeting with the doctor at the end of the week. It was nice having him around. He can always comfort me and make me laugh when I need it the most. When we met with the doctor, they confirmed what we already knew- stage 3 (most advanced stage for myeloma), high risk, and aggressive. I would likely need chemo for life and the prognosis was not very promising. This doctor would not give me a prognosis but told me I would probably not be in remission for very long. Then he went over the “plan.” I would return in 2 weeks and we would get started. They would give me induction chemo and collect stem cells which would be about a month. I would go home for 2 weeks. I would return and have the first transplant and stay in Arkansas for about another month. Then I would return home for a few weeks. I would come back for the second transplant for another month. I would return home for 2 weeks. I would come back and have consolidation chemo. I would go home for 2 weeks. I would come back for testing and the start of maintenance, then I would return home. My head was spinning and I couldn’t help but tear up thinking about all of the time I would miss with my new baby at home. I would be missing the whole first year of her life. I would essentially be living in Arkansas for the whole year with short trips back home in between the long months away. I started having second thoughts. I didn’t think I could stand being isolated from my family that long. But what choice did I have? I wanted the best shot at survival and this was it. I agreed to the plan but begged for longer than 2 weeks to get started. I had to figure out childcare. I had to file for medical leave from my job. There were a lot of things I needed to get into place before spending almost a whole year in Arkansas. My doctor told me we had to start in 2 weeks. He said he was already shocked my whole spine hadn’t collapsed with the condition I was in. He said the matter was urgent and I was in very bad condition. We needed to act fast. Family and friends jumped in to help and we got everything figured out for me to be able to receive treatment in Arkansas.
Facing Death
Imagine being told you would be dying in a couple years. The only analogy I can compare it to is somebody holding a gun to your head. You can’t think about anything else. You can’t function. You are in a state of constant panic. This was now the pinnacle of my devastation. I began to withdraw from friends and family. There was no way I could partake in any normal conversation when I had a gun to my head. I couldn’t bear to hear about someone’s day to day happenings, what their kids did that morning, or the funny thing that happened at work. All of it seemed trivial and inappropriate when I had a gun to my head. All I could think about was dying. I would only have 2 more Christmases. I wouldn’t be alive for the next presidential election. My warranty on our furniture would outlive me. The list goes on. It is extremely uncomfortable and terrifying facing your own mortality. I couldn’t relate to anyone around me anymore. I felt very far removed from everyone and everything. The only person I could still relate to was Chris. He was the only one going through the exact same grief and terrifying reality. We spent many nights just grieving and trying to come to terms with this new reality. I called my doctor and was prescribed antidepressants and anxiety meds. I tried therapy. I think I went through at least 3 right at the beginning. I couldn’t do it. Here they were telling me to practice my breathing and to take some deep breaths and that was supposed to alleviate this gun to my head? All of their suggestions and advice seemed of little value in comparison to the chaos I was dealing with.
More Bad News
It was my second meeting with Moffitt. My genetic testing was back. I had 1q gain, 1p loss, and 13 deletion. If you have any one of the genetic abnormalities, you are categorized as high risk. I had 3. Only 15% of all myeloma patients are high risk at diagnosis. Guess what? I fell into that very rare 15%. High risk patients have much poorer survival rates, are typically harder to treat, and relapse faster. Remember when I lost my mind thinking I had only 8 years left to live? Well now I was being told to expect 2-3 more years, max. My doctor at Moffitt told me it was “highly unlikely” that I would make it to 5 years post diagnosis. I was at the point now where I really just didn’t know how much more I could take. It was now literally a death sentence. I would be dead by the time Hayden went to Kindergarten. She wouldn’t even remember who I was. I went though the whole grieving process again, this time with even more events I would never get to see. I told my doctor at Moffitt I was considering getting treatment at UAMS. He discouraged me from going there. “They are entirely too aggressive” he stated. “You will lose your quality of life.” He warned me the treatment there is so toxic and so aggressive that I could end up in a wheelchair the rest of my life. He warned of other major side effects that could result from tandem transplants. I politely listened to what he had to say, but ultimately my mind was already made up. I was given 2-3 more years and I was willing to go through anything and everything to get any more time I could.
Moffitt Official Diagnosis
I set up an appointment with Moffitt. It was the day after Charlotte’s 5th birthday. This would be my initial diagnosis appointment. The only hope I was still holding onto was that maybe it was smoldering multiple myeloma which is much easier to control and comes with a much longer life expectancy. The day of the Moffitt appointment, I had to go in alone. No visitors were allowed due to Covid. Chris was going to drop me off and then my parents and Chris would be part of the meeting via speaker phone. I remember pulling up to the building and crying when I saw the big word “Cancer” on the front. None of it felt real. I was sick to my stomach. I felt detached from everything happening. I went into the room. There was a leaky faucet dripping. I was in there for 45 minutes before the doctor and his assistant came in. He explained I did have multiple myeloma. I asked if it was still smoldering and he told me unfortunately, it was not. I had very active disease and would need to go undergo treatment immediately. He went on to say the life expectancy was around 8 years. People can go into remission, but unlike other cancers, it always comes back and the patient eventually will succumb to the disease. This is what makes it a terminal cancer. I lost it. I cried and sobbed and I honestly don’t remember much else from the 2 hour and 15 minute appointment. Thank goodness my dad took detailed and thorough notes. Only my dad could keep it together and remain calm and rational during the most difficult situation of HIS life. The doctor shared some of my results from the scans. There were lesions everywhere, across my whole skeleton. There was so much damage. My PET scan lit up like a Christmas tree. They were still waiting on some of the genetic testing. There was some talk about putting a rod in my arm as the bones were so destroyed. I can’t even express the level of sadness I experienced. I slept all day if I could. I didn’t want to be awake. I didn’t want to eat. I tried to be around the girls but I couldn’t. I couldn’t be around the girls for more than 10 minutes at a time without losing it and retreating back to my bedroom. It was horrible. I spent way too much time in my dark room in bed. My mom would plead with me to eat, come out of my room. But I couldn’t. When I wasn’t sleeping, I spent more time researching, wondering what I was going to do. In my research, I found UAMS. They were located in Arkansas. They had great survival rates. They did aggressive treatment and were highly recommended. The more I read, the more appealing it became. I was young and otherwise healthy. I wanted the most aggressive treatment available and it seemed they were one of the only facilities in the country still performing back to back tandem transplants. I knew it would be a stretch but made the call to see if my insurance would cover treatment there. They returned the call about a week later. They said they had worked it out with insurance and I could come there. It was the first glimmer of hope I had in a while.
Utter Devastation
Multiple myeloma is a cancer that forms in a type of white blood cell (a plasma cell). It is a blood cancer but also commonly called a bone marrow cancer. The cancer cells build up in the marrow and crowd out healthy cells. The most common attributes are bone damage, a weakened immune system, kidney failure, and decreased red blood cell count. Many people find out they have it after breaking ribs, backs, necks, etc. It is notorious for causing fractures all across the body. It can be put to sleep with treatment, but it always comes back. Sometimes after months, sometimes a couple years, sometimes many years, but unlike other cancers, it will return, it is just a matter of when. This is what makes it incurable.
This is the hardest part of the journey to express. There I was, living life like everyone else. Working full time, taking care of the kiddos, enjoying my new baby, running this way and that to prepare for the upcoming school year. Then within a span of a couple of weeks, that life was over. I now learned I had an incurable cancer at 34 years old. I had a disease that would kill me. The flood of realizations that come with this is overwhelming. My first thoughts were the girls. Their mother was going to die. The first emotion was heavy, heavy grief. I grieved all of the things I just assumed I would be there for- sports, first days of school, dates, driving, dances, graduations. Goodbye to all of those. I wouldn’t be there. I had been suddenly robbed of all of this. This feeling of grief weighed me down the most. Then there was denial. I kept thinking OK maybe I’m just going to go through some things and then get my other life back. I didn’t want to say the “C” word, I didn’t want to wear any cancer shirts. I didn’t want anybody saying I had cancer. I figured I would just take care of it and then go right back to work and continue my life, like you would with a surgery or the flu or something-just a setback. Guilt. I am single-handedly ruining my kids’ childhood. Childhood is supposed to be a time of joy and wonder. If I die when they are children, their childhood is permanently tainted. I will be the sole cause of their trauma and heavy grief. How could I do this to them? How would they ever get through such a horrific nightmare. The one person who is supposed to be there to console them will be gone. They need their mother and I will be leaving them forever. And what about Chris? He didn’t sign up for this. Does he realize what HE is about to endure? He will be left a young single parent. How is he going to manage? I am also ruining his life. And then my poor parents. How are they going to manage going through all of this? To lose a child? Powerless- I’m used to being in some sense of control. OK, there has to be something out there that will just cure me. I just need to find it. I can’t just actually die from this in a few years. Has there been anyone who survived? “Survived” is relative it seems. Some make it longer, but then it comes back and takes them. Reading online was just absolutely terrifying. It always ended with pure panic, dizziness, sobbing uncontrollably, verge of panic attack, but I couldn’t stop doing it. I was hungry for so.much.information. And then the feelings of why me? Was God punishing me? Had I done something wrong? Why was I given this? Why don’t I get to watch my kids grow up but everyone else does? Then the morbid thoughts of actually dying. Will it hurt? Is there an afterlife? Will I still be able to watch my kids grow up from somewhere else? Will my kids have to watch me slowly deteriorate? What will my funeral be like? I really did become absolutely obsessed with death there for awhile. All in all, I was the epitome of a train wreck. I couldn’t handle the barrage of thoughts. So, I slept. Sleeping was the only thing that would turn off my brain and bring me some relief. When I was awake, it was a waking nightmare. I was sobbing, screaming into pillows, researching, and panicking. I lived in my bedroom. My mom was here. Thank God she was because I couldn’t do so much as make the kids a sandwich without having a full fledged mental breakdown. I hid in my bedroom because I didn’t want the girls to witness their mom crying and wailing. I knew they would both pick up on my uncontrollable crying and depression, so I hid from them. It was such a dark time.
Waiting is the Hardest Part
It all begins with an idea.
Waiting for results was awful. I checked and rechecked my portal. I carried my phone everywhere set on super loud in case the doctor called. I couldn’t concentrate on anything going on around me. My mom had come over to stay with us through all of this. One day she was out in the pool with Charlotte while Hayden was napping. I was on the computer researching everything of course. I got up to get some water. All of a sudden, I couldn’t breathe. My heart was racing. Weakly, I opened the door and yelled to my mom that something was wrong. She raced inside with Charlotte. I sat down and the room was spinning. I told her I couldn’t breathe and my heart was beating increasingly fast. Panicked, she asked if she should get an ambulance. I told her to just take me to the ER quickly. She ran next door to get our next door neighbor to watch the kids. Our neighbor came right over and my mom whisked me into the car and headed to the ER. The whole ride, I literally felt like I was having a heart attack. My mom dropped me off but couldn’t come in because of covid. They wheeled me in. My heart rate was extremely elevated but other than that, everything was normal. Lying in the hospital bed, I was starting to feel normal again. The doctor came in and said she believed it was a panic attack and asked If I had ever had one before. I told her I had not. She asked me if I had any stress in my life. I explained the situation and she reassured me I am too young and healthy to have cancer. A week or so later, the hematologist oncologist called and said yes, he believed I had cancer. Not only did I have cancer, it was in the highest stage and I needed to seek treatment immediately. There were 90% plasma cells in my marrow. My proteins were super elevated. I didn’t know what anything meant. He said it looked like multiple myeloma but it would have to be confirmed by Moffitt. I tried to draw lots of information out of him but he passed it off and encouraged me to make the appointment with Moffitt. They would answer all of my questions. I could tell he was really not trying to have such a conversation over the phone. I knew I officially had multiple myeloma.
Bone Marrow Biopsy- a necessary tool in ruling out or diagnosing Myeloma
It all begins with an idea.
A bone marrow biopsy. They go into the marrow and pull out a sample from inside the marrow. I have had 8 or 9 of them now. They typically will give you a small vial of morphine to drink beforehand to “help.” I was told it helps with pain in the skin area when they go in but nothing can subdue the pain once they are inside the bone. They can’t numb bone or the marrow inside. They use lidocaine on the outside to help with the skin and some tissue pain. Once they enter the bone, the pain is an 11 out of 10. It is excruciating BUT it only lasts about 6-8 seconds, then it is back to regular pain. I tell new people you can endure anything for 6 seconds! If you are new and reading this, ask for a sedation bone marrow right from the start. I had 4 or 5 without sedation before learning you could be put to sleep during the whole procedure- um, yes please! When you get it with sedation, they give you a small dose of propofol, you fall asleep for about 10 minutes and wake up with the procedure complete. In a typical biopsy, they may need to go in 1-3 times to get what they need. They don’t always get it on the first pull. When I had my first biopsy, we rushed the procedure to get it done fast. There was no time to schedule with the clinic. This doctor wanted to move quickly. I had to have it done on a traditional exam table in a doctor’s office rather than in a bone marrow clinic. I didn’t receive morphine, just a bit of lidocaine. She had to go in SIX times to finally get something (probably a combination of having a weird angle on an exam table and the heavy disease burden at that time making it difficult to get anything). Either way, it was one pull after the next, and it was not fun.
Multiple Myeloma or an Autoimmune Disease?
It all begins with an idea.
I made an appointment with a hematologist oncologist to discuss the blood results I had done. Nervous doesn’t even begin to describe how I felt about that appointment. My mom came with me to the appointment. When the doctor finally came in, she started with “I’m very happy you came to see me today.” Ok so there is something there she needs to address I thought. She explained there were abnormal results in my bloodwork. She said it could be an autoimmune disorder like lupus or rheumatoid arthritis. At this point, I was so relieved. Thank GOD! I thought. I will take any autoimmune disorder over that multiple myeloma I had been reading about. At least then, I could live more than a few more years. Then it came. She said it would be awfully rare for someone my age BUT that it could be something called multiple myeloma. As soon as she said that, I burst into tears. I had been googling it nonstop and I knew deep down that’s what it was. It made it very real to hear those words come out of a doctor’s mouth as even a possibility. That was the one absolute thing I was hoping it was NOT. I didn’t hear the rest of what she said. All I wanted to do was get up and leave the room. They talk about fight or flight. In a moment of pure panic, it is very real. I desperately wanted to leave and be anywhere but there. The doctor continued with the statistics. It would be extremely rare for me to have multiple myeloma. It would be a less than a 1% chance. The disease is typically found in people over the age of 65. She said I would need additional tests to confirm what it was. She sent me for more labs. These labs would test specifically for myeloma so we could “rule it out.” I was referred to another hematologist oncologist but was told they couldn’t get me in for OVER 2 MONTHS. That was the best they could do. I couldn’t wait that long. I HAD to know what was going on. The anxiety, fear, and panic I was experiencing could NOT continue for MONTHS. I was now living in a state of constant panic. Thankfully, Chris had a client who was a surgeon and Chris was convinced his client would know somebody who could see me faster than 2 months. Thankfully, he was right! His client got me in with his buddy who was a hematologist oncologist the very next week. Knowing what I know now, thank GOD he did. If I had waited that 2 months, my spine would have completely collapsed and I probably would have gone into complete kidney failure, or worse. I was unknowingly at the end. Two more months and I would have been done for. I went to meet with him. Chris came with me to this appointment. When he came in, he also said he either suspected lupus or multiple myeloma. They needed bloodwork testing for myeloma and a bone marrow biopsy to confirm. I already had an appointment for the blood work. He would schedule a bone marrow biopsy to rule out multiple myeloma.
The Beginning (Spring 2020)
It all begins with an idea.
The questions I get asked the most are “How did it start?” “Did you have any symptoms?” “How did they find it?” The symptoms were random and seemed unrelated over a long span of time-fatigue, cavities, headaches, back pain, sweating, and infections. While I was officially diagnosed in 2020, I know I had this for a long time. I had symptoms dating all the way back to after Charlotte’s birth in 2015 when I was 29 years old. This is when the fatigue set in. This made sense. For those who know me, you know I almost died after Charlotte’s birth! That’s a whole OTHER story though! Everybody credited the fatigue to the catastrophe I went through following her birth and adjusting to life with a baby. That whole year of 2015, I had severe headaches every single afternoon. I had never had headaches before in my life. I found myself taking Excedrin migraine every day around noon while teaching math. I reported this to my doctor and did some investigating by getting my vision checked and getting an MRI of my brain (Myeloma does not usually show up in the brain, it is a very rare occurrence that it spreads to the brain). I was also getting a multitude of cavities. I had never had cavities before and suddenly, I had multiples at each visit. I know now that this is another initial manifestation of myeloma. I also had back pain (a telltale sign). I figured it was from carrying around my baby all the time. I went through multiple baby carriers but could never carry for her very long without my back giving me a very hard time. I wondered why other moms could hold their babies for hours but it pained me to do so.
More telling symptoms began to appear in 2020. Coronavirus was on everyone’s mind. It was certainly a crazy, CRAZY time in the world. In the spring, I spent my time working full time from home and watching both littles (one 4 years old and one 8 months old!) During that spring, I was extremely fatigued. It didn’t matter how much sleep I would get, I would wake up and feel the need to go back to sleep only hours later. I attributed this to the craziness of our new normal, having to work from home WITH the kiddos with no help. I believed that would make anybody tired. But this was a fatigue like no other. Closer to diagnosis, I was going to bed at 7:30 every night right after the kids. That summer, more symptoms began to pop up. I would sweat at night. As a person who was always cold, and I mean ALWAYS, this was bizarre. I would frequently awake to a damp, cold sweat and take my temperature. It was always normal. There was never a fever but always a light sweat. This sweating soon began to happen during the day. Intense flashes of heat would leave me in a soaking sweat. This was certainly not something I had ever dealt with. Then, I kept getting urinary tract infections. It was something I had always been prone to getting since high school. They gave me antibiotics but it kept coming back. This was something that hadn’t happened with them before. One round always knocked them out. I went to the doctor and they set me up with a nurse practitioner. During the visit, she asked when my last physical had been and I told her it had been awhile. On my way out the door with even more antibiotics, she waved to me from the waiting room door as I was checking out and said “Remember, I know you’re busy, but you really should look into getting that physical!” I had zero intention of getting one. We were on the cusp of returning to school for preplanning. I really didn’t want to take off during the first couple of weeks. I had just come off of maternity leave and had used all of my days. I had a ton of work to do to get my classroom ready. The kids had their physical appointments scheduled. I had to get Dusen into the vet. There was a lot going on. I had also just had Hayden and they had done blood work and such so I really didn’t think I needed one. However, for some reason, I kept replaying that suggestion in my mind. I kept thinking about what she said. I called my mom and felt bad about asking her to come over to Tampa to watch the kids so I could get a physical (they were still home 24/7 due to covid). I remember the conversation. We both went back and forth about whether I should get one or not but ultimately decided she would come over just for a day or two since her schedule was clear. I was very close to not getting that physical! Thank GOD I did. If you believe in the universe trying to tell you things (I’m still undecided but starting to think there is something), the nurse urging me to get a physical was one of them. I owe that woman my life. A week later I went in for my physical. I told the same nurse practitioner I felt fine except for some back pain. I couldn’t sleep on my stomach at night and thought I must have pulled something. I told her I had a TON of fatigue (this was probably the number one symptom), and some random hot flash-like sweating. We both agreed these were classic postpartum and hormone-related issues. I went for a blood draw and went on with my life. About a week later I got a call. I was in the kitchen making Charlotte a snack. The nurse practitioner reported my results were back. I was very anemic (but had been for years) and there were lots of other abnormalities across the board. They wanted me to start taking iron supplements. They also wanted me to come back after 2 weeks of iron supplements and have the bloodwork repeated as it was probably just a fluke. She sent me to have more CBC blood tests done and also ordered a whole other set of labs (CMP). School had been delayed by 2 weeks because of coronavirus so we took advantage and went on a little vacation to my mom and dad’s house. The nurse practitioner called and said that the second CBC came back abnormal and the CMP also came back abnormaI. My hemoglobin, hematocrit, white blood cells, protein, calcium, and sodium were dangerously off, among others I can’t even remember now. She still believed it could be a fluke and wanted me to do one more set of labs. Now I was becoming a little concerned. I started to google all of my blood results that were out of range. Everything I came across kept mentioning “yadda yadda yadda… and in rare cases, multiple myeloma.” This thing called multiple myeloma was showing up in every blood value I researched. I had never heard of it before but spent the rest of the vacation researching and panicking. When I read the underlying symptoms, it was as if I could check every.single. box. I knew then that this was it. I didn’t need a proper diagnosis. I had a sinking feeling that this was definitely it. Everything I read was very discouraging. The average life expectancy was measured in months, not years. It was incurable. It was highly unlikely people with this cancer made it 5 years past diagnosis. I was very frightened that it could be this cancer but tried to hold it together until I had a doctor’s opinion. When we got back to our house, I went back to work for preplanning. I was working in my classroom when the nurse practitioner called. She said the third set of results came back and they were still very abnormal. She wanted me to make an appointment to see a hematologist oncologist. I knew an “oncologist” treated cancer. She still reassured me it was probably nothing and could be something like an autoimmune disorder. I remember questioning her directly about multiple myeloma. She said “I’m not really the gambling type, but if I was, I would bet a lot of money that it isn’t something like cancer.” I still was beside myself. I couldn’t stay at school. My head was spinning. I couldn’t concentrate. I went to my administrators who were in the cafeteria cleaning up from our meeting. In tears, I told them what was going on. They told me absolutely to go home and figure things out. I left that day not knowing it would be my last day as a teacher after an 11 year career.