Lindsay and Kerri’s Story
Part One, By Lindsay Coulter
It was my 30th year! Some people dread their 30th birthday, looking at it as the end to their young and carefree years of their 20’s. While that can be true, I chose to look at it as a new chapter and an exciting time. My husband and I had decided that after I turned the big 3-0 in May 2014 we would begin trying to have a baby. And sure enough, in July, we were blessed to find out that we were expecting.
Ironically, the months leading up to my cancer diagnosis were some of the healthiest months of my life. I had begun a strict routine of challenging exercises, eating clean and even dabbled in running, a sport I chose to avoid prior. And upon finding out that we were pregnant, I followed all the “rules.” I used the right nail polish, avoided really hot showers, didn’t eat blue cheese or sunny side up eggs or lunchmeat….I was a rule following fool when it came to all of these things!
One very important rule you read in the books is to get your teeth cleaned during the second trimester. During this cleaning, my dentist checked a spot on the bottom part of my tongue that he had made a note to follow up on the next time I was in. It was still there so he recommended that I go for a biopsy and assured me the entire time it was just precautionary and he was sure it was nothing.
While waiting to hear about the biopsy results, my husband and I went about our daily lives. Then the week that I fondly refer to as “high and low” arrived. On Sunday we moved into a new house, on Monday at 18 weeks pregnant we found out we were having a BOY (yay!) and on Thursday morning, my oral surgeon called to inform me that the biopsy came back as CANCER. My world stopped. As I am sure that everyone who ever hears that they have “The Big C” does. I even had to call a co-worker into my office during the call to witness the news. Cancer? At 30? While pregnant? But I followed all the rules, mapped out our plans, did things the “right” way, CANCER?
The oral surgeon explained that it was Squamous Cell Carcinoma and she had already made an appointment with an ENT/Surgical Oncologist that afternoon. After the initial shock, I called my husband and my mom and we were off to see the surgeon. The Surgical Oncologist, Dr. Kim, was amazing. He was so kind and sympathetic. He explained that we should have an MRI done to see how large the tumor was. From there, he would recommend that we remove the tumor and the lymph nodes on that side. We scheduled the surgery for two weeks later. We consulted with a high risk obstetrician/gynecologist to go over the risks involved with surgery. While it’s extremely scary to undergo surgery while pregnant, they still recommended the same course of action due to this type of cancer being typically aggressive in younger people. Having no risk factors, non-smoker, social drinker and the tumor testing negatively for HPV, studies show that tongue cancer can be quite aggressive.
On November 18, at 20 weeks pregnant, I went in for the surgery. I felt so lucky to be so close to Pittsburgh, a city that has an amazing medical reputation. Dr. Kim was kind enough to perform the surgery at Magee Women’s Hospital where I would be delivering so that it was easier to monitor the baby. I was only in surgery for about four hours and the baby did just fine! Dr. Kim removed about one quarter of my tongue and about thirty lymph nodes. After surgery, I was able to eat and drink fairly well so I was able to go home after only two days.
We celebrated our first Thanksgiving in our new home a week later and I even ate some of the delicious feast! I was feeling so optimistic while waiting for the full pathology report. Finally, we heard from Dr. Kim. The good news was that the lymph nodes were all clear. Thank God! The not so good news was the pathologists saw that the cancer was growing in an aggressive manner. They saw that the tumor was growing in a “skipping” pattern; a clean margin, then a microscopic cancer cell, a clean margin, microscopic cell, etc. The MRI would not have shown these microscopic cells since they were so small. Dr. Kim’s recommendation was that we should remove half of my tongue, a surgery called a hemiglossectomy and that I should undergo chemo and radiation after delivering a month early.
My world was immediately sent into a tailspin. Half of my tongue? Chemo? Radiation? I thought we were out of the woods! This is when I decided I needed some extra support. I Googled “Cancer While Pregnant” and Hope for Two’s website came up. I was astonished that there was an organization like this one. I immediately completed the form requesting a support person and just a few days later I was connected with Kerri Brooks. I hate to say that I was “relieved” to read Kerri’s cancer journey, it makes me feel a bit insensitive. But I can tell you that her words and experience certainly made me feel less alone and comforted, especially after the news of a second surgery.
Kerri’s honesty, optimism and sense of humor were some of the first things I valued in her. She didn’t hold back about what was going to happen. It wasn’t going to be pretty and it was going to be really hard. Your body is pushed to the brink during all of the radiation and the side effects are extremely tough and long lasting. After her surgery she described that her “tongue was the size of Texas” and this just made me giggle. She counseled me on the toll it takes on your family, especially your husband. But all the while she was a symbol of hope for me. She got through this (having her treatments while pregnant I might add…yea, she’s one tough cookie!) and so would I.
The surgery was scheduled for December 26. At the doctor’s recommendations, I would deliver around 35 weeks and begin six weeks of chemo and radiation the following week. This was all so scary and quite emotional. As a mother, you never want to put your child in any type of danger and you want to protect them from all harm. Knowing that I would be enduring a nine to ten hour surgery, have a tracheostomy, a feeding tube, be on pain medications for some time and now have to deliver early…I could not get the guilt out of my head of what danger I would be putting my unborn son in.
My husband was a little more level headed and matter of fact about this. He kept telling me that this was what we had to do to ensure that I was around to raise our son. My family and friends all agreed and were ready to support us when we needed it. So on Friday, December 26, I had my second surgery. They removed a muscle from my arm and used it for the half of my tongue that was removed. Modern medicine is amazing. Seriously. After the surgery, I was in the ICU for eight days. The baby did great through everything. I got to hear his heartbeat and movements two times each day through a Non-Stress Test. He was such a trooper!
I recovered quite well from surgery and before we knew it, it was time to be induced. Our son, Carson Richard Coulter, was born on February 16 at 7:21pm. He was 7lbs. 12oz. and 21 inches long. For being a month early, he was completely healthy. We went home as a family of three and spent a week together before I started my treatments and had to leave him almost every day for a short period of time.
The chemo and radiation were extremely hard. This is where Kerri was such an inspiration and lifesaver. Head and neck radiation causes numerous, not so fun, side effects. (Mouth sores, mucus (gross!), facial rash, nerve pain, losing the ability to eat, exhaustion…just to name a few!) And each time I started to experience something new she was there with a suggestion or solution to the problem. Being able to shoot her a quick text or email with a question or complaint (there were a lot of those!) was priceless. As most cancer survivors would probably agree, you really don’t understand it unless you’ve lived it. Having her there for me really helped me get through some of the hard times. And knowing that Hope for Two’s network and resources were there if I needed them brought a comfort that can’t be explained.
My husband and I were so lucky to have our mothers to help us with Carson through the nights and while he was at work. I was really wiped out from the radiation and even though the treatments were only six weeks, it took me about three months to fully recover and get back on my feet. I could have never got through it alone and I thanked my lucky stars for my husband, family and friends each and every day.
When Kerri and I first connected, she told me that she had grown up about an hour away from where I lived. She had also mentioned that she would be coming to that area the next summer for a family reunion. What are the chances? We each hoped that we could make a meeting happen. She was living in Georgia and I was in Pennsylvania so the thought of us actually being able to meet face to face was exciting. So this past July we did get to meet! It was such wonderful moment being able to hug Kerri. She had been there for me through some of the toughest moments that the cancer and treatments brought and also the joyous moment of Carson’s arrival. There we finally were sharing, laughing and enjoying each other’s families and I can’t even express how thankful I was in that moment.
I had come across a quote by C.S. Lewis that describes mine and Kerri’s connection “Friendship is born at that moment when one person says to the other, “What? You too? I thought I was the only one.” If you must find yourself in such an overwhelming situation such as being diagnosed with cancer while pregnant, it is a blessing to know that there is always hope. Kerri helped me see that and I will always be thankful for our special bond.
Part Two, By Kerri Brooks
I am so proud to be representing such a wonderful organization as a support person for Hope for Two. I can remember when I happened upon the site…pregnant with cancer, I can’t even remember what I had searched for in my moment of being scared…I mean pregnant with cancer, I never imagined those words to ever fit in the same sentence! To know there were others out there that had gone through or were going through it with me was the first comforting feeling I had had since my cancer diagnosis!
I am a 43 year old mother of one 16 year old stepchild: Carolyn, one highly dramatic 5yr old: Kaylee and one highly energetic 2yr old: Maddie. I was first diagnosed with tongue cancer in June of 2009…I remember thinking tongue cancer?!? You can get cancer in your tongue! I had my first surgery on July 2, 2009: removal of the tumor in my tongue and a radical neck dissection to remove thirty-three lymph nodes (and salivary glands…however I was not aware of that until radiation)! All was good, no nodes showed any signs of cancer. My doctor said the tongue was a result of smoking…great glad I was peer pressured into that lovely habit! I remember being so angry at myself, thinking it was something I could have prevented! One year goes by, I get married, I have my first little girl, two years go by…my husband and I start looking for a new home, planning our future…coming up on three years my tongue began to hurt again. August 2012, I leave my school’s open house early (I am a teacher) to go to my checkup…my tongue had been hurting for about a month, I was in total denial! I remember the doctor looking in my mouth and saying “it’s back, dammit”! I was not prepared for him to cuss! I missed the first two weeks of school to have another surgery to remove more of my tongue…this time I was released to go home after I proved I could eat a cracker…a cracker are you kidding me! It was then I learned that I had a different strand of tongue cancer, not caused by smoking but one that was striking women between the ages of 20 to 40, it just so happened I got both strands…well lucky me! But this time life did not go on, I was in a lot of pain, my tongue hurt all the time and the nagging pain in my ear was ever so present AND I found out I was pregnant! I went to the doctor in October and then at Thanksgiving, I could not even enjoy food, and my pregnancy was at risk because of my age. A week or two into December I had another checkup….I reported that I had ear, tongue, mouth, throat pain…his face spoke volumes, I wanted to puke I was so scared …he looked in, once again “it’s back, dammit”! What, it’s back BUT I’M PREGNANT. I could tell he did not know what to say to me…..hesitate hesitate…it will be fine, what is the name of your high risk doctor, I will work with her to figure all of this out. And he stated that I would more than likely need radiation after more surgery…BUT I’M PREGNANT! What is radiation like? He states, have you ever gotten a bad sunburn…me yes…well it’s like that but in your mouth and throat…what…what…where am I…BUT I’M PREGNANT! I was by myself that day, didn’t expect that it would be back, so I told my husband not to worry! Still don’t know how I drove an hour home that day…I remember feeling numb! I had surgery in January of 2013 to remove more tongue…geesh, you would think I wouldn’t have anymore left! Then came the follow up appointment…okay so it’s stage 2 right…the doctor states well, we are going to get to that..okay get to it…well, it was quite deep and very aggressive…and, and…what?…what?…tell me…doctor states it is STAGE4…silence, I could feel the tears welling up in my eyes…stage 4, stage 4, sta…BUT I’M PREGNANT!
That is when I reached out to Dr.Elyce Cardonick through the Hope for Two site. She was fantastic, she told me everything to ask, to say, to know. She was unbelievable, I would call her and she would call me back within 20-30 minutes…the info/advice she gave me was phenomenal! There was no option of waiting until after the baby was born because of the stage. I knew it would be difficult and as a mother I did not want to put my baby at risk, but I also wanted to be around and watch both of my girls to grow up. I started radiation and chemo in February of 2013. I had seven rounds of chemo once a week and 35 rounds of radiation over a seven week period. I refused to give into the feeding tube because it would go down my nose and I was not having anything to do with that! The third week of radiation was the most difficult, but I remained tough and continued to eat…it was not until the last week that I started struggling with swallowing, eating and drinking. My last treatment was on March 29, 2013. That is when it all kicked my butt…I struggled with the pain and having to take the strong pain medication while I was pregnant. I was dehydrated, having to get fluids, not eating, blood pressure all over the place….my body said enough already! On April 11, I started to get really bad cramps and spotting…well now I know I was in labor. Maddie Sue was born on April 12 weighing in at 4 lbs. exactly. She was breathing on her own and looked like a little beautiful porcelain doll! Maddie had to spend a month in NICU due to the fact that she was struggling with feeding, she actually ended up with a feeding tube down her nose which I found somewhat ironic, and although it was the most difficult thing I had ever experienced I knew she was in the best place possible and it was allowing me time to heal and recover and let my then two year old know that I was okay! Maddie came home on May12 which was Mother’s Day. It all just seemed like a higher power was definitely with us, guiding us, providing us with strength! I am happy to report that Maddie, “my little tough cookie” is in fabulous health, she of course is smaller than other two year olds due to her preemieness…but that does not hold her back or stop her from keeping up and getting what she wants from her five year old sister! My last PET scan was clean as well as my most recent CT scan. It is only the constant aching fear I live with now!
Becoming a support person for Hope for Two was something I decided I would do as soon as I found the organization. They had not had anyone with my specific type of cancer and they did not think they would…that was in October of 2014. By December of 2014 they contacted me about a woman that was pregnant with TONGUE CANCER. For a minute I thought to myself…”see other people can get tongue cancer…ha”! Then I felt so heartbroken for this first time mother that was going through an ordeal of a lifetime, the same struggle that I had not even fully recovered from yet. I knew we were meant to be, the stars had aligned and I was going to reach out to her. You can imagine my surprise when she told me she was from Pennsylvania and that she grew up not far from where I lived when I was a child. We were so connected! The thing about being a support person is that you are helping someone going through the same struggles that you went through…BUT what they do not understand is that they are helping you in more ways than they could ever imagine. Being able to email and text with one another reminded me that I was not alone. It let me know that what I had struggled with was real because she was struggling with some of the same things. I was scared that talking about my cancer would bring it back…silly I know, but what Lindsay did for me was make me stronger and more confident and PROUD to be a survivor. But more importantly it gave me a friend that knew, she got it, she understood, she felt what I felt…we had ridden the same roller coaster with the same twists and turns and we were both tougher for it! I was so excited when my family chose Pennsylvania for our family reunion. Lindsay went through so much and she kept such a brave face through it all…I could not wait to give her a big hug! That meeting was an amazing event in my life, so much emotion and joy! Getting to meet her beautiful baby boy Carson and see the smile on her face was phenomenal. Meeting her husband and seeing the deeper love and bond that the big C brought into their lives helps me not be so scared. I feel so fortunate to have a friend in Lindsay and we will see each other again! Below is the poem that I wrote for her and attached the children’s book The Little Engine that Could…I figured she could read the poem to her son to explain to him what all his tough little mama went through to get him here safely:
The Little Mama That Could
The day she heard, she cried tears of joy:
a new little bundle a beautiful baby boy!
A time to be happy a time to be glad
but suddenly stricken with an obstacle that made her sad!
Tongue cancer, what’s that, why me, no way!
I have big plans; I don’t understand what you doctors say!
To help the little mama fight they came up with a plan,
and even though she was scared she said “I think I can!”
She was brave, she was fierce, she fought with all her might!
Soon she was kissing her baby boy and hugging him tight.
She continued to kick cancer in the butt,
chemo, radiation she felt sick in her gut.
But the love all around her and her beautiful son
gave her the strength to continue even though it was not fun!
Now she feels better, some days she never thought she would
and looking back on her fight she says “I knew I could!”