What can I say about Missi? Probably quite a lot since I have know her nearly all my life. Our journey together began in 1984, 3rd grade, Mrs. Rival’s class. I can’t recall what it was that made us friends but whatever forces in the universe that brought us together stuck like glue and for years if you wanted to find me I was in her house holding dance competitions, riding bikes around the neighborhood and generally getting into whatever trouble we could find. She was my person through some very awkward Jr. High years and while we stopped spending every waking moment together as we grew older we never stopped being friends and sharing that special bond that is created when you grow up with someone.
That is why when Missi put out to the world that she had cancer me and my family felt an overwhelming sense of sadness and devastation. Here is Missi’s story, in her beautiful words:
February 2010 Missi, a dental assistant, is brushing her teeth one day and noticed a lump on her pallet. Let me repeat, Missi is a dental assistant, she is well aware that a lump should not be there. So naturally she……waits and at the end of July while eating some chips she feels it again, only this time it’s a bit larger. I’m teasing her by writing it this way, just like I did when she told me this. When she felt it again she thought it may be an abscess but it hurt and it shouldn’t so she saw the dentist and was put on an antibiotic for 20 days. There was no change. Thinking perhaps it’s a glandular blockage it’s recommended she have a biopsy which she does after much procrastination. All this is in Missi’s safe space with people she knows well, a place she has worked, for six years. What she wasn’t prepared for, what no one ever is, is what happened next. Arriving at her appointment to remove the stitches from the biopsy the doctor comes in and shuts the door. She said she immediately knew what that meant, you never shut the door unless it’s bad. She didn’t remember much after hearing the door close except that he told her she had adenoid cystic carcinoma and after hearing carcinoma her brain shut down.
She explained it was like she went under water, where you can hear voices but not really what he was saying, so she nodded a lot. One of the pieces of information was that they had already set her up with an appointment with a specialist in Boston. Her only thought at this point is, I need to call my husband, she was in shock, not crying, not really knowing what to do. She just wanted her husband of 14 years, David, to be at her side. She dialed the phone and blurted out, I have cancer, meet me at work. Her shock turned to tears as the words came out of her mouth and her and David cried together as they drove to her mom’s to tell her. Missi lost her grandmother to cancer so telling her own mom and her great gram that she now had this disease was as hard as telling her own children.
Because family meetings are actually something Missi and David do they called one that night. Unfortunately, most family meetings are also bad news, this was no exception. Their daughters, 14 and 9 at the time handled it as children do, uniquely and difficult with one running into her arms and the other guarded and closed off. Everything happening so quickly her next meeting was with an oral surgery professor and oncologist, Dr. Salama, a no bullshit, matter of fact man who tells her right away, we’re going to have to take 1/2 of your palette. Thinking this was a joke she actually laughed. The only thing was, he wasn’t joking. He explained, to get cleaner margins they would also be taking her parotid gland in her jaw. A 7 hour surgery including a palette replacement, followed by a short hospital stay.
At this point it should be sinking in that this is not your “typical” cancer, most of you have probably never heard of it. The reason for this is her cancer is actually one of the rarest in the world, tricky and unique. Her palette would be replaced using bone from her leg and her Dr. was so confident he said, I’ve never had a failure, meaning there’s never been a rejection from this type of replacement. As if having the rarest cancer wasn’t enough, he’s temping fate here.
Missi took to the internet and watched an entire surgery to know what she was in for and what would be happening to her during those 7 hours. On December 2nd, 2010, Missi and David’s 15th wedding anniversary, Missi entered into a 7 hour surgery. 7 hours turned into 15 as doctors at Boston Medical Center worked to remove cancer, glands and bone then replace her palette. The time was more than doubled because despite their valiant efforts doctors could not get clear margins and to this day she has a tumor in the back of her skull. Her family, particularly her oldest daughter refused to leave the hospital until her mom woke up.
Due to complications she spent 12 days in the hospital and had a hard time walking again due to the bone which had been removed to replace her palette. She worked hard at rehab to be home in time for Christmas and credited nursing staff for helping her in her darkest sickest time. Missi lives for her children and hated being away from them for that long and even credits her cancer (to a point) for helping her and her daughter’s relationship grow past the volatility it once had.
Missi’s return home isn’t without its own challenges. She has a visiting nurse and round the clock care as David decided to take a lay off to be home with her. She had a feeding tube, slept in a living room recliner, joked that she was going to dress her dog in a nurses hat because he never left her side. Unable to walk more than short distances Missi decides she’s done with letting this disease control her life and just 2 days after returning home they borrow a wheelchair and surprise her oldest daughter at her very first chorus concert. But recovering isn’t about just being home and being taken care of, because her surgery was so extensive there was a follow up to remove dead tissue from inside of her mouth. She considers herself a pretty tough cookie but having tissue removed while she’s awake was more than she felt she could handle, though she did because she really is that bad ass. But while doing this doctors noticed her pallet replacement was failing, remember those famous last words, I’ve never had a replacement fail? Well, it did and she had to have it removed. So now she can not talk since she has no palette, there’s nothing for her tongue to hit against to form sounds. Her family has to literally learn her new language of sounds to be able to understand her over the next 6 weeks until they build her an operator to insert into her mouth.
She then began 7 weeks of radiation, David was able to return to work and she had her feeding tube removed which meant she could eat again! For a few weeks she actually thought things were pretty easy when she began having a hard time swallowing and was reduced to only eating jello until her #1 fan, David, introduced her to flan which changed her life! Brittany, her daughter, who was with us during our talk interjects, “She ate so much flan!” It’s what she lived on until her body developed a dairy intolerance and at this point it’s just sounding like food wasn’t meant to be something in Missi’s life. She had to rinse her mouth with a numbing agent just to be able to swallow, her face broke out and the further into radiation she go, the worse her side effect became. Despite losing more and more weight and not being able to open her mouth more than a few millimeters Missi declined to have a feeding tube put back in.
She went for check ups every 3 months and scans every 6. At the 1 year mark she was given the green light to go back to work but decided to take the Summer off to spend with her kids for the very first time. She returned to work in the Fall as a temp and after 2 years there made her way back to the office where she was first diagnosed, taking on a role as a supervisor, it’s 2014.
I want to just stop here, to stop typing, to tell you this is Missi’s story but you see, with her type of cancer it almost always comes back. An even if I were to stop typing the fact is that in 2018 Missi and I found ourselves standing together in line at a wake waiting to mourn the loss of a high school friend, from ALS. We’re catching up, trying not to think about losing someone our age when she turns to me matter of factly and says, my cancer is back. I mean I’m already teary eyed so I guess this is as good a place to hear as any, right? At that point I do my best to hold things together and tell her that if she ever wants to sit down and talk to me about it I will be there. That was just over 1 year ago, and here were are now, talking through this next portion of her story.
Because her cancer most commonly reoccurs in the lungs they begin yearly lung scans. On one chest scan they think they see a small spot, a year later her chest scan is clear, then the year after that they see more, tiny marks they’ll call nodules. Too small to take action on but still there. Her next scan, 2018, she goes again and there’s more this time and they’re bigger. They do a pet scan to see if any other part of her body show signs, and there’s nothing anywhere other than her lungs but they lit up and that is never a good thing.
Missi meets with a thoracic surgeon who decide to biopsy and all the while she just knows that it’s back. It’s not a negative statement, but a realistic one. Reoccurrence happens in 85% of patients with this disease. She explains that when she heard her test results that somehow it was worse this time, it broke her heart. See Missi just wasn’t prepared to die, her and David even decided to adopt a child and had begun the proceedings. She started to feel like she’d never meet her grandchildren and still had so much she wanted to do. When I asked why this time seemed so much harder she said, she’s seen so many people from her support group pass away that knowing her odds made it worse.
But little did she know the universe wasn’t prepared to disappoint her and two weeks after find out her cancer was back her oldest daughter Bre told her she’s pregnant. She cried tears of joy and that night David reminded her that he told her she’d get to be a grandmother and now it’s coming true. And on July 8th, 2019 Missi became a grandmother to Keegan Christopher. Her and David will also be finalizing the adoption of their 14 year old son this November and he’s already a perfect addition to her family.
As of this interview Missi had 1 more radiation treatment to go and in a few months will go in for another scan. Missi knows her odds, she’s realistic and positive all at the same time. She’s strong and gives off that sense of strength when you speak to her. I’ve cried more writing this than I did when we sat together and spoke. I didn’t have her strength of presence here with me today. Prior to her diagnosis Missi struggled with depression and no longer wanting to be a living breathing member of society and has now found herself cherishing every single moment of time she gets here on this earth. She views cancer as an argument or disagreement and not a battle or a fight.
When asked what advice she’d give to people who have friends or family diagnosed with cancer she replied, don’t treat people like they’re different or fragile, let them do what they do and live normally. Let me be me and don’t treat me differently. Accept them for who they are. They’re going to have good days and bad days, just let them be who they are and let them tell you when they want to do the fun stuff. Remember who you love and want to be around and don’t hide or disappear.
A little piece of our History together: