“You have to make it home for your kids. This can’t happen. You have to make it home for your kids.”
I said it over and over as the blood poured out of my mouth. The nurse and my husband (who gets faint just talking about medical procedures) kept passing me 8oz plastic cups as the blood poured out and filled each one. We filled up four cups before someone had the idea of shoving a towel in my mouth to apply pressure and stop the bleeding. I still needed a tub to catch what continued to flow out. Someone brought over the suction machine next and, finally, my poor husband could go sit with his head between his legs and catch his breath while I tried not to pass out.
And maybe that’s a dramatic start to this post, but luckily, that was as bad as it got. Most people don’t have that kind of luck.
My cancer story starts about a year ago when I noticed some white patches on the right side of my tongue. They would be visible, then fade, then come back. Since I’m always clenching or grinding my teeth, I thought I had injured myself and was having a hard time healing. I basically ignored it. With two kids under two, I had a tendency put myself last and going to the dentist was not a priority. When I finally made appointments, first for my children’s first cleaning, and then for myself, the white patch had grown, become raised, and was hurting me when I ate spicy or acidic foods. I was finally more than a little worried about what was going on inside my mouth.
My dentist took a look, took some pictures, and sent me to an oral surgeon for removal/biopsy. Both the dentist and oral surgeon said “maybe” cancer, but I didn’t fit the “normal” types of folks who get oral cancer. The surgon actually said, “If you were an older man who smoked or chewed tobacco, then I would be thinking cancer, but we’ll remove the lesion and get a biopsy anyway.” Well, that biopsy result was squamous cell carcinoma. And since no one thought it would be cancer, I went to get my biopsy results at the surgeon’s office ALONE. Not the smartest thing I’ve done. The surgon actually received most of his training in the army, I found out later, which is probably why he made a run for it when I started crying. Luckily, the nurses and receptionist showed me some kindness and I was able to drive safely home.
My husband was preparing to go mountain biking that day, having taken time off for that specific purpose, and knew as soon as I walked in the house that something was wrong. He held me and managed to be “the strong one” while I told him the biopsy results and cried. We took some time to process it, then called my parents. The news spread quickly from there. A word of advise to anyone newly diagnosed with anything scary – when you’re ready, start a group text with your family/friends. It was so helpful to easily share updates with my core support system as we went through this process. It helped folks worry less and helped me manage everyone else’s expectations as I went through treatment.
And speaking of treatment, the first biopsy wasn’t too fun, but I was eating normally in a week. Unfortunately, because no one was thinking CANCER at the time, they did not remove enough tissue and I needed a second surgery. I met with two groups of doctors, a local RI team and a team up at Dana-Faber Cancer Institute in Boston MA. The RI Lifespan group actually impressed me more – their attentiveness, kindness, and humor made the process bearable. I didn’t feel like “a patient” – I felt like they actually cared.
So, I scheduled my surgery and went in early on a Friday morning. As Dr. B (the ENT on the team) reviewed the procedure with myself and my husband, poor Steve went pale. I guess talking about removing a piece of someone’s tongue is a bit gross, but I was trying not to giggle at the poor guy, who is normally so strong. The nurses jumped in and got him comfortable, but they wheeled me into surgery with him still in a recliner, ice pack behind his neck. The removal went well – they had someone in the room doing a quick pathology review of what was removed to try to ensure we got “clear margins” and would not require additional surgery. When I woke up, I was so tired, and in pain, but after some time I was able to sit up, drink, and get dressed. We decided with Dr. B that I was doing well enough to go home, and so we did.
I spent that Friday afternoon in bed, with family at the house, helping distract the kids. Later that night, I started having a lot of pain with swallowing because they intubated me during the surgery. The liquid vicodin they gave me for the pain burned the hell out of my throat and was starting to upset my empty stomach. By Saturday morning, my neck was swelling up. We called Dr. B, who said some swelling was normal, but to go to the hospital if it continued to worsen. By 4pm, I was scared – my neck was about 3 times its normal size and even swallowing water was painful. We went to our local emergency room, and they started me on steroids and antibiotics, but they didn’t have ENT support and wanted to send me to Providence. I was transported via ambulance, my mother had relieved my brother & sister-in-law to sleep over with the kids, and Steve took our car to meet me at the other hospital.
Now, picture the scene at a city hospital on a Saturday night, because it was something right out of the movies. Lots of folks were high or drunk, the woman next to me had been badly beaten up by her boyfriend, and there were cops everywhere. One gentleman in a wheel chair had a backpack full of snacks that he kept offering to the rest of us who were waiting for a room. We’re talking pistachios, cheese, crackers – just about anything you could want. And while he was definitely “on something” or “off his meds”, it was actually good to see how kind he was being to those around him who were suffering. The woman next to me who had been beaten up said to me when Steve arrived, “It’s good that you have someone who loves you.” As bad as I was feeling, I was grateful that I was not alone – not only did I have my loving and supportive husband, but I was seeing kindness (as well as craziness) all around me that night.
We finally got moved to a cubicle where I got more steroids, antibiotics and fluids, while we waited for a room in the main hospital. And boy, did we wait. All. Night. Long. But again, we were shown kindness when a nurse actually rolled in a second bed for Steve to rest on, knowing it was against the rules and she could get in trouble for doing so. It allowed Steve a few hours of rest before we were moved to a room and my parents came to switch places with him. As I spent Sunday afternoon in the hospital with my parents, I started to drink some broth and juice and the swelling came down and I was getting re-hydrated. Steve came back to switch with my parents, we saw my doctors, and decided to stay the night to ensure I was on the mend. Then the unbelievable happened – I had just finished some broth and jello for my “dinner” when I literally felt something pop on my tongue and my mouth filled with blood.
As I stated above, there was a lot of blood. The nurses requested the trauma unit to come assist, which was in fact called, but was not called over the intercom (apparently, they were called directly via the phone at the main desk on the floor), and my nurses were in a panic. I had closed my eyes to the bustle around me as they finally had a towel in my mouth and were applying pressure, trying to use the suction machine to keep my throat clear, and failing to get additional IVs into my arms (I have ridiculously small veins, so although I already had three lines for IVs and blood drawing, they were not big enough for whatever they were trying to give to me while I was bleeding). They asked me a few times if I was still with them, so I would open my eyes and nod a little, but I really didn’t want to see what was happening to me. I was trying to stay calm, but really began to worry at how long it was taking for the bleeding to stop, for me to be moved to the OR, and how I was starting to feel very faint.
Finally, one of Dr. B’s colleagues showed up and her calming presence seemed to help everyone. They started to move me to the OR and Steve called my parents. (My mother would later tell me how she reacted, and all I can say is there’s nothing like a mother’s love for her children and THANK YOU aunt Joyce for talking her through the car ride to the hospital.) The trip to the OR was not fun – not being able to communicate your needs when you’re in a situation like that is very challenging. At one point, I just wanted someone to help me hold up my head because I felt so weak and I didn’t want the blood to go down my throat, but couldn’t get anyone to understand. And as I moved from my bed to the OR table, I couldn’t tell them I didn’t want to lay down because I still had a lot of blood in my mouth, so, instead, I took a deep breath in through my nose and blew out hard from my mouth, spraying blood everywhere, but I finally got the suction I needed. Nothing like being a good advocate for yourself, eh?
As I was moving to that table, the chatter around me was that I would “be fine” and “everything is ok”, but I laid down thinking I was going to die and the only proof otherwise would be if I actually woke up after they cauterised the rupture. Knowing I had to get back to my kids helped me push through that. Knowing that if I did die, they were too young and wouldn’t even remember me helped me push through that. You can credit god, the universe, karma, science, whatever, but after the wonderful doctors that helped me, I am crediting my love for my children as what helped me push through that.
Skip ahead after 5 days in the hospital, on IVs and a liquid diet, I finally went home. And I’m only skipping ahead because I want to get to the most important part of my story. The part where I learned first hand what it means to have an amazing support system.
I know I am luckier than most. I am genuinely loved by a lot of people. My husband and children are genuinely loved by a lot of people. And I have a lot of advantages that most people do not have – a great job, kick-ass health insurance, a big, safe house, and reliable transportation. I am in the minority for those things alone. Then you add in the loving and supportive friends and family, and I’m coming out way ahead of the game. I am not saying all this to make others feel worse if their situation is not like mine – I am just trying to acknowledge that I am fully aware of how many advantages I have and how they played a role in my healing process.
For example, I didn’t have to worry about losing my job when it was clear I would be out of work longer than I originally thought. My manager sent me flowers the day before my surgery. She told me time and again how much she cared about me, how important it was for me to take the time to heal, and how she supported me in taking a little more time off to deal with my complications and my reaction to them (because, yes, I need a little therapy after that bleeding episode).
And then there’s the health insurance through my husband’s employer and how his manager supported him to come to appointments with me and to miss work while I was in the hospital recovering. His employer’s health plan is one of the few left that offer PPOs, and since we’ve always been generally healthy, I’ve come out of this experience with less than $1000 of out of pocket costs, when I’ve had things like CAT scans, PET scans, all kinds of blood work, and an extended hospital stay. How many people in this country would be inundated with bills they could never hope to be able to pay after an experience like mine?
My care team was amazing as well. Not only did I have a team of awesome local doctors, I also had the option to travel to Boston to meet the Dana-Farber team. Dr. B did a great job, removing all the cancer cells on that second surgery. Dr. T did a great job taking care of me when I had the bleeding issue and talking to my husband so he would know I was going to come out of that OR just fine. My oncologist is truly a wonderful person to work with – he is a lovely human being and answers all of my type-A personality questions with intelligence and humor. And at the end of the day, I don’t need radiation or chemo because we caught the cancer early enough and the surgery went well. That bleeding issue happens to 2% or less of patients who undergo similar surgery, but my team handled it like pros.
And most importantly, there’s family and friends who have repeatedly dropped everything to help us. My brother and sister-in-law came over multiple times to watch the kids so we could be at the hospital, since they’re the closest geographically. And our kids LOVE them and I know it’s been good for them to have fun throughout this experience with them. Then my parents would relieve them to take care of the kids or take turns to stay with me at the hospital – none of us were alone for a single minute. My mother advocated for me when I could not. My father worried for me so I could focus on the positive. And all the while, my aunt Joyce supported them in their pain and fear, taking some of their burden for them from across the country. My aunt Laurie got on the war path from the beginning to get me into Dana-Faber for a second opinion, she brought over food, and played with the kids. Steve’s parents brought food, played with the kids, and helped out around the house. Our kids’ nanny stayed with them on the holiday weekend so we could focus on me getting better and getting home – she has truly been a “constant” that has helped the kids have some normalcy through this. Our friends, cousins and coworkers have checked in with us regularly and all the warm thoughts and prayers gave us strength. My husband has somehow managed to be strong for me and also emotionally available – it’s a tall order when you’re asked to be the warrior and the nurturing friend at the same time. He has held me when I was sad or scared, he has played with and nurtured the kids, and he held it all together when I know how scared he was himself and how hard it was for him to see me so unlike my usual strong and positive self.
And finally, my beautiful children! Jakey is a bit too young to grasp everything that is happening, but that kid is a wonderful cuddler and just sitting with him in my lap when I got home was so healing for me. Sophie definitely understands more, and she’s been pretty good at “taking care of mommy”. She knows not to kiss me “hard” since my mouth hurts and that I couldn’t always pick her up because I was too weak. She was gentle with me and that really showed me how even a three-year-old can have some empathy.
The timing of this is kind of interesting, since my husband and I have been thinking about moving out of state, and now we’re questioning that. I had seen previously how my family could come together in a crisis as my cousin battled with stage IV metastatic breast cancer that ultimately claimed her life. I don’t think I really understood it until I was on the receiving end of all that love. How can we abandon that? How can I take that from my kids, when they so obviously love having a house full of people who adore them? Can I recreate that with strangers hundreds or thousands of miles away? It’s something we have to think about and talk about, but now that I’ve been on the receiving end of all that beautiful, caring energy, I want to remain close to it and reciprocate.
And reciprocate not just with my loved ones, but “pay it forward” to others. One of my big lessons was in humility – I am truly humbled by how my specific set of circumstances made my cancer treatment and recovery possible. We all say we don’t have the time and resources to devote to certain causes or a charity, but the reality is that life can be really short and we should do what we can with the time we have. So, now that I’m recovering and focusing on what is really important in life, I want to devote some of my resources to helping others. Not just donating my kids’ used clothes in a bin, or handing $5 to the homeless person on the street, or donating food to the annual Thanksgiving drive, but MORE. I don’t know what “more” will be yet, but I’m open to suggestions if you want to drop some in the comments section! Because those who have enough should build a longer table, not a higher fence, and I know now how much I have to share with those who are less fortunate than I.