Fighting Cancer As A Family for 5 Years
Today, I'm a successful optician, Mom, and Wife. I've been married for 12 years and my daughter is 7 years old. On the outside, we look like a typical nerd family who loves all things Lord of the Rings, Hobbit, Harry Potter, Game of Thrones, and 80's gaming. In reality, we are anything but typical. For the first 5 years of my daughter's life, we fought cancer as a family with me as the primary treatment subject.
In 2012 I had just finished a run at a local theatre playing Sister Mary Amnesia in the production Nunsense. This production helped me overcome the mental agony of experiencing our third miscarriage. I even spent time sewing the habits for the show. The cast was awesome and we all had an amazing time. It's hard to believe so many years have passed. However, during the last week of the show, I began having hot flashes and itching. I figured it was due to the layers of fabric we were wearing under the bright stage lights. Little did I know that this would be the beginning of a 2-year struggle with severe itching, hot flashes, and night sweats.
Slowly but surely friends were becoming less available to me as I was always uncomfortable. At work, I struggled to go the entire day with my bra on under my scrubs. I literally would take breaks to go to the bathroom and strip down so I could scratch at my skin which, by the way, had no signs of a rash. I was very lucky to have a PPO plan. I began with my PCP and slowly but surely worked through 15 different specialists who all concluded that it was "in my head."
They began treating me with OCD, Anxiety, and Depression meds, wondering why I wouldn't just “get over it.”
I began taking multiple antihistamines every day. At one point it finally began to feel like the symptoms weren't as bad. About two months after I figured out this combination, I went to work and was nauseous for nearly 8 hours straight. I just knew I couldn't be pregnant. My husband had literally not been able to touch me for nearly a month... Or could I? I went ahead and took the test which replied with the word PREGNANT. Like this was the most expected thing to happen.
After three miscarriages, I began sobbing uncontrollably. I called my Mom who reminded me this was what we had been wanting. My only thought was that they were going to kick me off all the medications that were allowing me to hang on for dear life. My sweet husband walked in to me sobbing on the phone and all the color drained from his face. When I told him what was going on he said he knew we could do this thing together and that this was going to be a successful pregnancy. He told me how strong I was and how much I was loved, but at that moment I felt like the most selfish person in the world.
My Mother and Grandmother sewed my maternity clothes out of materials I deemed comfortable enough to wear. They added panels to my scrubs for work. I was so exhausted I couldn't wear makeup or pretend outside of working with patients. I only have one picture from my entire pregnancy and I'm not even sure where it's saved any longer. Every time I see it I'm reminded of how poorly I handled my pregnancy when I was supposed to be glowing. You see, I was that over-efficient, Pinterest-crazy woman who thought I was going to have that "sparkle" type of pregnancy. Instead, I struggled just to get through the day-to-day.
When I went to my 36-week check-up, I was so stressed that my blood pressure went up to 288. The Dr knew how I had struggled and decided to induce me 3 and a half weeks early. 16 hours in, I had only dilated 6 cm. At 10:30 pm surrounded by family, I began shaking uncontrollably and asked my sister to grab a nurse. Something was wrong. I went tachycardic. My temp was 101.8. They took me in for an emergency c-section. When they started, I could barely keep my eyes open from exhaustion. I remember feeling the first three cuts. I said ouch a few times but apparently, it wasn't super audible. When they finally heard me they realized only half of my epidural was effective. They asked my husband to leave and placed a mask on my nose.
Four hours later I awoke in the ICU with my husband by my side. I was informed our baby was doing well in the NICU four floors down. I felt as if I'd been robbed and somehow I had this baby now. I worked really hard to walk as much as possible. I was unable to breastfeed as the close contact made me itch so much that it was unbearable. Yet, I had this 6 lb 7-ounce ball of a baby who cried and depended on me for her every need. Over the next four months, I suffered from severe postpartum depression. When she smiled for the first time at nearly four months old I knew I'd make it.
At this time I had been going to a massage therapist to try to relax. I went in on a Monday morning to see my favorite therapist and he said, “I think we should do a deep tissue massage today. Your lymphatic system has been feeling a bit blocked up.”
By Wednesday, I was at the ER with severe gastritis. Whatever he stirred up was attacking my stomach lining. They did a CT and a Chest X-Ray. A very somber-looking young man came to get me from the waiting room. When he realized I was by myself I think he was freaked out more than even I was... I just wanted relief. He proceeded to explain that they had found a 5"x3"x2" mass in my upper right chest between my shoulder blade and clavicle. There was also a golf ball-sized mass in my left mediastinum. I'm sure that he expected me to be devastated but I was so relieved that it wasn't in my head. There was proof. Even if it was cancer I could handle treatment far better than being told I was crazy and this was just my quality of life.
They did a biopsy of the mass in my chest and found that I had some type of Lymphoma. They instructed me to stay off of Dr. Google. The next appointment with MD Anderson to confirm the severity of my cancer would be a month away. No one tells you about the wait. No one explains that you just have to deal with the sleepless nights, the questions, and the concerns of everyone in your life. The endless suggestions about how you should handle the news that you have cancer. Seriously, I don't know that Lemons won't cure cancer but unless you're the one who has to deal with it, keep your lemons to yourself and your mouth shut.
I had a four-month-old and a family to think about.
God gave me the child I was so in need of. Luna was an easy baby. She mostly slept and even stayed in her own bedroom by herself. She slept 13 hours a night straight away from the hospital. Don't get me wrong, she has grown and changed since, earning the nickname of Sassappotomous, but I know God has a plan. I'm just here for the ride.
MD Anderson was huge. I understood immediately why there was such a long wait. If the average person could see the waiting area just for chemotherapy, their mind would be blown. Your appointment was always about an hour before they could actually bring you back.
I underwent 6 rounds of ABVD chemotherapy. I was very tired and usually slept 14-16 hours the first day after treatment. My Mom would keep the baby for the weekend and by the time I got to Monday I went on to work. I did have one episode where I had finished working with the patient and said excuse me, ran for the restroom, and lost my lunch. I really didn't have a lot of issues with this particular treatment. My hair thinned a bit and I was often tired but after three rounds I was in complete remission.
We moved to the Dallas area to be closer to my family. I'm one of five children and we are very close. I began living my life as usual again. I began working at a boutique-style optical and making friends again. About nine months in I was working and absent-mindedly started scratching at my chest. I walked into the bathroom and realized I had bruised my skin quite badly without even realizing it. I told my manager I thought it might be back. She immediately had me call my doctors, saying “It’s better to be safe than sorry but I could feel it in my bones that you are alright.” That December, I had another scan.
Three weeks later I was told that everything was lighting up again and I now had three masses the size of golf balls. Two in my lower abdomen and one between the base of my lungs moving me to a stage three status. Next, we would do three rounds of ICE and follow it with an autologous stem cell transplant.
After my second ICE, I went to take a shower and with the hot water running on my scalp I began pulling handfuls of hair out. My scalp ached, like after you wear a hat too long or your hair in a tight hairstyle. I was happy to get it all out because it was slightly painful but I did struggle. I pulled my hair out in an anxious struggle, barely able to breathe. Luna was almost two and began saying she wanted R/Bapunzel hair and NO HAIRCUTS! I'll never forget the fear in her eyes every time we wanted to trim her hair. I did all three treatments expecting my third to be a mobilization treatment for the transplant. The admin team failed me. Apparently, they didn't verify my insurance in time and found at my third treatment that they were not in-network for the transplant. I ended up transferring treatment to Methodist and then did a FOURTH treatment for mobilization.
Methodist was amazing. The team who did my stem cell harvest even sent home rolls of the wrap they use for blood draws for Luna to play with after I told them about her fascination with the stuff. She had it wrapped around her head running around the house because obviously what else do you do with that stuff at two years old?
My father was a patient most of his life having 36 surgeries in 26 years before his death in 2011. He was what we call a PITA. He was loved by all the nurses but we all knew he made their lives difficult. I made it my mission to not be a PITA. I baked three floors worth of brownies for the staff when I checked in at the hospital. I was administered 6 days of severe chemo by the acronym BEAM+R. Each day I felt worse than the previous. I tried to stay positive and share my birthday treats with the staff as well since I could no longer taste them properly and my appetite was waning.
I turned thirty-one on the 18th and 1 on the 19th.
One day, I attempted to take a shower with the water too hot. My blood pressure was low so I couldn’t get up on my own and nearly passed out before pulling the wall alert. The nurses pulled my bare butt up off the floor and got me to bed. After that, I walked a ton and chatted with the staff whenever I could. I read books and colored since I’m not much of a TV person. I tried to do a video chat with my baby but I looked terrifying. She hid behind my Mom and nearly started crying. I was very lonely and missed my family. My husband stayed in Dallas to work and keep our insurance while my Mom kept our daughter and I stayed at Methodist. My youngest brother drove 45 minutes to bring me a blue Powerade because that's all I wanted. My family is amazing. Approximately a month later, l was discharged.
I was down 50 lbs and found out that an allergy to a certain pain medication caused hallucinations. Once I tried to go to a meeting at 4 AM before realizing that all the hall lights were off and remembering that I was in the hospital. Another time I thought it was time to change the caps on my lines. I realized after taking them off that I did not have replacements, nor was I a nurse. I had to call the nurses and let them know what I had done as I wasn't sure if I had contaminated them. I had also been talking to them like they were my daughter when they were checking on me as well. Drinking fluids was almost like having a plastic lining strewn down your throat. You could feel the movement but it was almost strangling. I ate a lot of cottage cheese and fruit. The Doctors and nurses noticed I was something of a mixologist as I would get every type of juice and mix them to my liking with tons of ice. My thirst was never quenched. I would never wish this treatment on anyone but without it, I might not be here today.
One year later I had my scans and boy was the scanxiety real! The Doctor had me in and told me she didn't know how but the scans showed a new mass. After a month of waiting and expecting my imminent death, they found out that the radiologist in Houston had failed to document an entire mass. So yes, for a month I thought there was very little hope. At thirty-one years old, I had been through so much, how would my life be if I made it another thirty?
Now, I'm almost 5 years in complete remission post stem cell transplant. This year, small things are huge! I had no cavities after seeing 12-13 per year for the last 4 and I was able to fight off two sinus infections without steroid injections or antibiotics. For those of you going through treatment, it does get better. It will get better.
I share all this to say, live life out loud. It is not short - it's fleeting. Love well. Wear all the crazy colors, travel to all the places, and be bold. Inspire others with your story. My goal in this "New Normal" is to inspire others. Also, I know the "new normal" is frustrating. Maybe it should have a different name... New has always indicated a happy feeling to me... The New Normal they talk about is difficult. Very difficult. Breathe. Recognize that there is a community of hope out there for you. Most will not understand but there are those of us out there willing and ready to speak with you and let you lean on us for hope and understanding. I hope this piece of my story inspires you to keep moving forward and to recognize that there is more than one player in the game. God has you.
Photo courtesy of author.