"While Hodgkin’s is highly treatable, it’s also fast growing. I wanted to be a mom so bad. This was the first time I really cried.'
Certain moments in life are unforgettable. So, burned into your memory you not only remember exactly what you were doing but the smallest of details. March 8th, 2013 was one of those days for me. Just about noon I received a call from my doctor that my fear had been confirmed, I had Hodgkin’s Lymphoma. I so vividly recall what I was wearing, where I was, the time, and the smell of the breakfast burrito the guy was eating next to me with a salsa stain on his white pressed shirt.
I was working for a cable company selling TV advertising space and on a sales call for a local door and window company. In the middle of my pitch, my phone rang. I was anticipating the call, so I excused myself. When I answered the phone the doctor said, “I have some unfortunate news Kendall, you have cancer.” He carried on saying I should be thankful for medical advances in cancer treatment because just ten years earlier my prognosis would have been very different. I appreciated the pep talk but couldn’t quite wrap my head around the call. I had what? Did young people get cancer? I’m 27, healthy, have my life ahead of me…could this be? Maybe they made a mistake? All these thoughts raced through my mind. I jumped in my car and headed home…never letting the potential advertiser know I was leaving. I still wonder what he thinks happened.
After I was diagnosed things moved rather quickly. On March 12th I was introduced to my oncologist. He was kind and I felt comfortable with him right away. He informed me that the tumor was 10cm in size nestled under my chest cavity sitting right above my heart. Despite all my Nancy Drew investigating skills on Google and Wikipedia, Hodgkin’s Lymphoma is one of the most curable cancers. I would start chemotherapy the following week and receive treatment every two weeks for six months.
My first question for him was whether I would be able to have children after all this. He said they never know. Some can and some cannot post-chemotherapy. My follow up question was if I could get eggs retrieved and frozen, he said there wasn’t time for that. While Hodgkin’s is highly treatable, it’s also fast growing. I wanted to be a mom so bad. This was the first time I really cried.
Before I could drill down and attack the problem, I had to undergo quite a few tests to make sure my body (especially my heart and lungs) could withstand the brunt of chemotherapy. In just one day I had my portacath procedure, a PET scan, and a bone marrow test (ouch!). After my bone marrow biopsy, I headed to the front desk to check out. I immediately started to sweat, vision became blurred, and my body began to sway…I was going to pass out. I started to cry and alerted my mom who acted quickly and guided me to the nearest chair. The nurse must have called my doctor because within seconds he was sprinting down the long corridor to kneel beside me. He grabbed my hands and assured me everything was going to be okay.
The next day I was getting ready to head out the door to get a hair cut. As I bent over to put on my shoe, without prompting an exhale, a loud wheezy breath escaped from my chest. I thought it was odd but didn’t’ think much of it because I was too excited for my new hairdo. I had always wanted a pixie cut and with the anticipation of losing my hair I thought there was no better time than now! I had almost reached my stylist when I got a call from the surgeon who had placed my port the day before. He asked me where I was, what I was doing, and if I had eaten anything that day. Hmmm...that’s weird, I thought, but answered all his questions. He said that after reviewing my PET scan he had a major concern. The vein that the catheter is supposed to feed was being impeded by the large tumor so there was no way it was going to work to carry the chemo where it needed to go. Further, the catheter had moved into the space where my right lung was, and that lung was collapsing. He urged me to get the ER ASAP.
Within an hour of arriving at the hospital later that afternoon they were wheeling me into the O.R. The doctor showed my mom the PET scan. He pointed out how they would try to move the catheter into a favorable position so it could serve its purpose, perhaps even trying to come from a different angle through a new incision on the other side of my chest. The surgery would only take about an hour. An hour and twenty minutes later, he came out and said that the tumor size and position was just not going to allow for the catheter to work there. They had to remove the portacath and would plan to install a PICC line into my upper arm where the chemo would be administered. A PICC line would be inserted through a vein in my arm and pushed toward the heart until the tip rested near the tumor. The thing that needed to happen ASAP was for them to start shrinking the mass, and the quickest way for them to do that was to get the chemo going promptly. Making matters worse, during the surgery I started bleeding into my chest cavity. Once they got the bleeding under control, they had to install a chest tube through my ribs and out to drain any additional blood and fluid. They kept me sedated during the night so I wouldn’t wake up and start pulling at any of my tubes. I spent that Saturday night in CCU (Cardiac/Coronary Care Unit) on a ventilator and received a couple of blood transfusions.
I remember waking, not knowing where I was and not being able to speak from the ventilator. I couldn’t move my arms or legs because of all the machines I was connected too, but mostly what I’ll never forget is the considerable pain from the chest tube. I intently watched the clock to make sure every two hours I received the allotted morphine, which barely took the edge off. Hooked up to a ventilator and in immense pain, nothing could shut this Chatty Kathy up. I mumbled for a bit until my mom grabbed a pen and paper…I wrote I love my mom, asked what day it was, Happy St Patrick’s Day, and that I wanted to go skiing. My mom still has that paper saved somewhere.
I remember a few things very vividly from that CCU stay. I remember my mom’s face when I woke up, my sister’s crying over my bed while I was in and out of sleep, my boyfriend (now husband) sleeping in the tiniest of chairs next to my bed all night, my Dad walking in and out of the room not being able to bare the sight of every vein and limb hooked up to all those machines, and the pain…oh my goodness the pain. I also remember my husband’s family visiting. The ENTIRE waiting room was full. Parents, aunts, uncles, cousins, brother, sister, all of them. I’ll never forget that.
Once I was discharged and the PICC line (a temporary replacement for the portacath) was placed, it was off to the races. Chemo started immediately. I did well. Sure, I had bad days, but overall didn’t have too many issues. My chemo cocktail was ABVD. What the heck is that? Well, it’s Adriamycin, Bleomycin, Vinblastine, and Dacarbazine. Phew, say that 5 times fast! My first chemo session my Nana and my mom sat beside me. My mom came to every single treatment. Nana asked me what I wanted to do when I was done with all this mess. I responded that I wanted to visit Machu Picchu. The next treatment she brought me a folded-up photo of the World Wonder. She said when I was done, I WOULD go there. I held on to that photo and brought it with me to every appointment.
Most of those six months seem like a blur, but one moment I’ll never forget. If you remember earlier in my story, I mentioned my boyfriend. Well, in the beginning of my treatment even he will admit he made a few mistakes as far as support goes. We were newly dating, had just moved in together, and BAM I’m diagnosed with a life-threatening disease. I was bloated, losing hair, had zero desire for intimacy, and ran around with a VERY short fuse. Now I look back and can’t blame him for the distance he put between us at times. He wanted to fix a problem he couldn’t and I was no longer the person he had started dating, I was someone completely different. All things considered, there is a VERY clear moment when I knew he would be the one I marry.
Towards the end of my treatment I was feeling crummy, I ran a bath and undressed. As I pulled my shirt over my head the button caught on my hair, without noticing I yanked it off, taking with it a pretty substantial chunk of hair. I hopped in the bath and began to wash my body, then my hair. As I lathered my hair, more and more came out. Every grip full of my blonde locks was met with loads of tears. He heard me in the bathroom weeping and came in. Without saying a word, he picked me up out of the water. Not phased by his clothes now being soaked, he hushed and kissed my forehead. I was naked, broken, and missing clumps of hair. He didn’t care…he saw me for me. Not as a patient.
Once I completed my rounds of ABVD, I was ready to move forward with my life. Excited to see what was around the corner. First up, we were off to Peru and Machu Picchu. My one-year cancer-free anniversary was spent on top of Huayna Picchu where Fily asked me to be his wife. Another moment I will never forget.
I continued to visit my oncologist regularly for blood work and the occasional x-ray or scan. Before I knew it, I was three years in remission. Cancer was a distant memory, the fear had subsided, and I had moved on.
A year after we got married, we decided it was time to start trying for a baby. I was excited and hopeful. Within a few months I was pregnant. The pink plus sign was the most exciting thing I had ever seen…but that joy was short-lived. Pretty quickly I lost the pregnancy. We grieved but were ready to try again. Pretty quickly we found out we were expecting again.
The three-month mark came and went, and I was thrilled to announce the news to my family, friends, and my oncologist. Our baby was due my birthday, December 16th. Sofia Joy was born exactly one week early at 7 pounds and 21 inches long.
I was so thankful to have been given this baby I could have not had because of my treatment. Becoming a mom was hard and wonderful all at once. My husband started on as a full-time nursing student through the satellite accelerated program at OHSU (Oregon Health and Science University). Life was crazy busy, but we were happy.
Fast forward to February 2018. My husband was nearing the end of his nursing school program, Sofia had just turned one, and I was settling into the role of mom and marketing professional. I was now down to visiting my oncologist every six months. A routine appointment was due, in for blood work then on to the doctor’s visit. We reviewed my labs (normal), he examined my body (normal), listened to my lungs and heart (normal).
Hematology-Oncology had just added a Survivorship Program, and my doctor let me know that once I hit my five years in remission (coming up the next month) that I would be asked to join. I was thrilled and honored to be introduced to other patients who had beat cancer and to help those currently in the trenches. I left the clinic with a clean bill of health and wasn’t scheduled to see my doc again for a full year.
Life had other plans.
March 9th at 2am I woke up with a pain in my left rib cage. I sat up in bed and felt around…couldn’t find anything so I laid back down and fell asleep. Within an hour I woke again, only to feel a little higher. There it was. A lump the size of a ping pong ball resting under my left armpit. I woke my husband immediately. Through tears, I told him what I had discovered. He calmed me, as he does, and assured me there was nothing to worry about but to call the doctor in the morning.
I called. They scheduled. We tested. It was back. The cancer was f-ing back. How? I thought I was in the clear? I know there is no guarantee after treatment, even though it feels like you should get one. You can buy a warranty for furniture, a car, your appliances, why not cancer treatment? Ugh. There was a tumor in my chest, one in my armpit, and another small one near my collar bone.
I was immediately thrown into tests, scans, and appointments to determine the route of treatment. My doctor referred me to a specialist at OHSU in Portland, just five hours north of us. Here we go again. I was ready to bear down and get to work.
Unbeknownst to me, a reoccurrence is an entirely different ball game. My ignorance led me to believe that this diagnosis and treatment plan would be just like it was last time. Nope. This treatment would be intense, and the prognosis isn’t as good. The gravity of this didn’t hit me until I visited the Hodgkin’s Lymphoma specialist at OHSU. Sure, he wasn’t the most warm and fuzzy guy, but he was brilliant and specialized in my disease. He attended Yale for college and then on to Harvard for his MD and PhD. When we sat down, he got right to it. My mom by my side, as she always was, he informed me that my odds were 50/50 at this stage. I went from 86% my first diagnosis in 2013 to 50-friggin percent.
His first recommendation was a chemotherapy cocktail of Bleomycin and Brentuximab. Both my doctors recommended this combo, said it was the best, but told me to not get too attached because it was VERY expensive, and MOST insurances deny it. Sweet. You’re telling me this is the best one, and you recommend it, but I might not get it because of money?! Not good enough for me. I called my insurance every day letting them know the importance of this regimen, my doc in Medford even got on the phone and sent a letter. Fortunately, it was approved. The hospital in Portland, and the specialist. Halle-frickin-lujah!!!
Once I finished the three rounds of chemo (over the course of three months), I would head to Portland for more chemo and a stem-cell transplant. Fortunately, my bone marrow test came back clear, so I was able to receive an autologous (my own cells) stem-cell transplant vs. allogenic (someone else’s cells) stem-cell transplant.
While I was in Portland, I asked the doctor if I had time to freeze some eggs. He said if I acted quickly. He said nearly all of his female patients are thrown into menopause, no matter their age, thus deeming them unfertile. We always wanted to have more children, so I made the appointment.
The doctor was incredible, my eggs looked viable, and then I got the projected cost…it would be thousands of dollars for the retrieval, and nearly $20,000 for invitro. I had a few conversations with my husband and my mom, said several prayers and made the decision to skip the egg retrieval. I decided that I AM Sofia’s mom. She needs me now, and I didn’t want to give that damn cancer any more chances to grow and spread.
The next few months I completed my chemotherapy and prepared to head to Portland. At the time, I was the only one employed while my husband finished school…without asking, my family and friends rallied around me. They helped raise money to cover medical costs, brought over meals, had our house cleaned, and watched Sofia when I didn’t have the energy. I’m still amazed and floored by the kindness of those closest to me but also from complete strangers. If you have had a disease, suffered a loss, or are currently battling something difficult you know how people can surprise you, both in the best and worst ways. How some show up, beat down your door, and offer themselves fully OR completely disappear. During this time, you feel vulnerable. You long for love, support, and comfort from those dearest to you. I learned to not get consumed by those who check out, don’t offer help, and overpromise without follow through. Everyone is facing their own battles. Disease is hard, ugly, and makes people uncomfortable. It isn’t fair to have expectations of people in these situations; some people just don’t know what to do or can’t handle it.
How do you prepare for something that can kill you? I was only 32, but preparation included gathering a will, an advanced directive, and sharing with my husband the life I dreamed of for our Sofia. Once everything was in order, my mom and I loaded Sofia and what we needed for the next two months into the car and headed North. My husband needed to stay home to care for our animals, watch over the house, and finish school…how he managed to stay focused and finish school still amazes me. He said Sofia and I were his driving force.
We arrived in Portland at the Residence Inn Downtown Riverplace the evening of June 12th. I can’t sing their praises enough. My Dad called and emailed the company’s management before we left. He explained the situation, and they agreed to help us. Our stay was not free, but they honored a phenomenal nightly rate, made sure the room was cleaned to hospital standards every day, and left occasional sweet notes of encouragement. This would be our home for the next two months. My mom called it Sofia’s Summer Camp because we wanted to try and make it as fun as possible for her.
I opted to do outpatient chemotherapy before being admitted for the Stem Cell transplant in order to spend as much time with my girl as I could. We visited the Zoo, OMSI (Children’s Museum), and parks. Of course, almost always sporting a mask and frequently bathing in hand sanitizer. During this time, we had several visitors. My (step) bonus mom, Kathy, Nana Betty, Papa Paul, husband, Dad Jim, sisters Jordan and Haley, cousin Hannah, and Aunt Joy. There were some good days while staying in the apartment preparing for the transplant.
First, I started on the take-home Zarxio shots. Anyone who has gone through chemotherapy knows Zarxio or Neupogen well. It helps with the growth of neutrophils. I had four days of Zarxio injections that I injected myself into my belly. This stuff makes you feel like one giant bruise. My skin, joints, even my teeth ached. Zarxio helps you overproduce cells so they can be collected through your blood using an apheresis machine. My counts were too low the first time they tried retrieval, so I got a booster shot of Zarxio, then back in the am.
Once my counts looked high enough they hooked me up to the apheresis machine. What the machine does is this…my blood was removed through a needle in one arm and passed through a machine that collected only the blood-forming cells. Then the remaining blood was returned to me through a needle in the other arm. After five hours they sent me back to the hotel to wait and see if one day of collection was enough. Some people need multiple days to get the goal of three million cells. I got a call within an hour from the head nurse. They had collected a whopping 7.4 million. I got the weekend off from being poked and prodded.
Tuesday, I received my Groshong line. This is an intravenous three-way valve where I would receive my chemotherapy as well as my stem cells.
After the Groshong placement, I was given five days of BEAM chemotherapy. The first four days were given as outpatient, on the fifth day I would be admitted to the transplant floor (14k). Aside from being tired, I handled the five days of chemo very well. This chemo is incredibly powerful and strong but is cumulative so they assured me I WOULD feel the effects within a week. It’s interesting because when you’re headed into transplant, they count backwards to zero…starting with negative numbers. For example, the first day of chemotherapy was day -6, then -5, -4, -3, -2, on -1 you get admitted to the hospital and day 0 your cells are returned.
I was assigned a room on 14k the evening of July 2nd. Kids aren’t allowed on the transplant floor and visitors are limited. Patients staying on 14k don’t have an immune system, so it is imperative that the staff maintains a sterile environment. Unfortunately, some people don’t leave 14k. I wasn’t afraid until that moment. I was afraid I wouldn’t see her again. I remember studying Sofia’s face and smelling her hair before I left. I kissed her cheek and made sure to say see you later rather than goodbye.
Entering the hospital with my pillow and suitcase in tow, I handed the lady checking me in my Advanced Directive. They had me sign some paperwork. Honestly, I didn’t want to read it…I’m pretty sure it said stuff about dying. My family took me up to my room and surprised me by covering every wall with posters filled with photos of my loved ones. This made me feel at home. Comfortable. Surrounded by love.
July 3rd, my second Birthday as they call it. My family came and decorated the room for a birthday celebration. That moment was important but uneventful. The nurse came in with my stem cells. She asked that I read my name, date of birth and reiterate what I was there for. Another nurse checked it, then a doctor, and another doctor. They all stood around, watched, waited. Probably the most awkward 15 minutes of my life. This was standard procedure to make sure my body accepted the cells and didn’t reject them. Some people say the stem cells smell like creamed corn and make the room smell like a Hometown Buffet…I was one of the lucky ones…don’t think I’ll ever be able to eat creamed corn again.
The first few days were hard emotionally because I missed my little girl. I had some nausea and abdominal cramping but nothing too bad. My sister Haley came up and shaved my head on my third day in. With her came our dear friend Juliet, who photographed the occasion. I started waking in the morning to clumps of hair on my pillow. I was clawing at anything I could, grasping at any opportunity to have say and control in the process. Having her shave my head was one of those moments of taking control.
Day +7 was when things started to get yucky. I lost some bowel control, developed hemorrhoids, had nausea, insomnia, mouth sores, and started my period. At that point, I had thrown my hands up and given in to the process. I knew this part would be hard and just went with it. I cried. A lot. A lot a lot. But after about five days I turned a corner and started to perk up a bit. The doctor even gave me the all-clear to have one visit from my daughter. This was almost better than the day she was born.
We were to meet in a sterilized room, her temperature had to be taken to ensure she was healthy, and hands had to be thoroughly washed. I was instructed to wear a duck mask. Would she recognize me? I was so concerned that she wouldn’t. Bloated from the steroids, half my face covered with the duck mask, and a bald head I entered the room. Her back was to me, and I called to her. She turned around, stared for several seconds confused. It was her mommy’s voice, but that didn’t look like her mommy. Within seconds she put it together that it was me. She ran into my arms and wrapped her little body around mine, letting out the biggest squeal. She squealed and hopped up and down clenching tighter and tighter. That was one of the greatest moments of my life.
I passed the days by reading, walking, writing, listening to music, and watching TV but found it difficult to focus for long periods of time. I didn’t want too many guests, and during those difficult days, I didn’t want to see anyone. I was in the bathroom for most of it. A couple nights after my daughter visited, I was having some issues breathing, my heart rate was elevated, and I was teetering on the edge of having a fever. They thought it was anxiety or a panic attack, so they gave me something to calm me down. That night I hardly slept and had to be given several things to help me breathe including oxygen. The next evening, after some labs, they realized I needed a blood and platelet transfusion. I felt better almost immediately.
Day +11 my ANC count started building. After just two weeks (most people stay much longer) I was cleared to return to the hotel on day +12. They kept me close for the next two weeks. Every day I checked in for labs and a review on how I was tracking. I did great and they sent me home July 27th. Another GREAT day!
October 17th was (around) my +100. This is a HUGE day for transplant patients. I had a PET scan to ensure the cancer was still gone, and it came back clear! My cells had engrafted, and my immune system was building. Due to my immune system being new, I must get all the immunizations I got as a baby again.
Today is June 4, 2019. I’m still in remission and plan to stay there. I go in monthly for labs and to meet with my doctor. My counts have started to stabilize. Every day I get more and more energy. My hair has grown into a very cute pixie cut I’ve grown quite fond of. My eyebrows and lashes are in. Overall, I’m doing great. Occasionally the fear creeps in that my cancer will return. That the conversation next time with doctors would be about maintenance and quality of life.
But I’m here now. I’m alive. I’m not a cancer patient. I’m a survivor. It doesn’t define me or my life. I’m a wife, a mom, a daughter, a sister, a granddaughter, a niece, a cousin, a friend, a co-worker, a neighbor. So many things make Kendall, Kendall. This is just one of those things that have been added to make me, me.
This story was written by Kendall Joy for our Hello Parents series. Our mission is to create a community of extreme inclusivity. Appreciating what makes us different and what we all have in common. No judgment. Just a village of support.
I was blessed by so many people during this process. I want to make sure I thank them. I can’t repay them for all they have done but I can promise to be there when they need me and promise to forever pay it forward.
To my family, friends, neighbors, and community. I love you. I’m forever grateful for what you have done for me and my family. I promise to offer all the help I can to others. I have so many plans for myself and my family. So many experiences to be had and shared.
I am thankful for this life, for this second chance, for this story.
Love, Kendall Joy
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