HPV Throat Cancer! WTF?!? Yes – that’s exactly how I felt when I found out I had it!
My story actually begins months or even years before the evening I first discovered a lump on my neck and the day I was officially diagnosed. I wouldn’t realize how significant these events would be for me until afterwards. There’s a saying:
You can only connect the dots looking backward
In January of 2015 I started getting heavily interested in the concept of mindset – more specifically around money mindset but also mindset in general. Concepts like Law of Attraction, thoughts become things, quantum physics, neuroscience, positivity, you create your own reality, etc. I’ve read and continue to read so many books on this subject. I’m completely fascinated!! It’s a new way of life for me.
Fast forward to March 2017 – December 2017
Back in late February or early March 2017 I received an unexpected text from one of my closest friends (Nancy). Her husband Jon (who is also a dear friend) had cancer – Non Hodgkin’s Lymphoma. This was devastating! These friends are like family to me. I’ve known them for at least 35 years and I absolutely love them so you can imagine how I felt to get this news. I wanted to vomit! I also felt like the worst friend because I didn’t see the text, nor respond until the following day!!
In the months to follow it was one thing after another with tests, treatments,, setbacks and research. Some days he was doing well, other days he was weak and sick after yet another chemo treatment.
He was such a trooper! Back in July 2017 soon after a chemo treatment he and Nancy came to the opening of a gallery show I was in down in Soho. It meant so much to me to have them there and to have such supportive friends.
The few times I visited in the hospital I would hear the nurses and doctors rattle off all the different medications he had to take and I kept thinking how do they remember all of this? I saw Nancy feverishly taking notes and asking lots of questions. It was so much to take in and so overwhelming but they stayed hopeful and continued to keep their spirits up – never for a minute giving up hope.
He was losing weight so they also met with dietitians and nutritionists and one thing I remember clearly was cancer loves sugar so while they wanted him to eat and gain weight, they really had to be careful about the sugar intake.
Each day – sometimes multiple times a day I would get text or phone updates from my best friend Pam (who happens to be Nancy’s sister.) I tried not to let the news affect my mindset but how could it not? I desperately wanted to get updates yet at the same time it was a complete roller coaster ride of emotions. All I wanted to do was help but didn’t know how.
A String of Health Issues
In September I was out enjoying an amazing slice of NYC pizza when all of a sudden had a really bad pain in my tooth and noticed it was a bit loose. Thankfully it was in the back of my mouth! I went to the dentist the next day and he said it was infected, it would only loosen more and suggested I have it pulled. What?!? It wasn’t that loose and I felt like that was way too extreme so I went home, tooth still intact and gargled with salt water for a few days.
At the end of November through most of December I got sick with the worst cough I ever had – I mean green chunks were coming up! I never went to the doctor because they usually just say you need to ride it out when it comes to coughs and colds and I’m not big into medication so I drank tea and made myself pots full of homemade chicken soup.
At the end of December 2017 I started feeling better, then on New Year’s Eve 2 things happened that seemed completely unrelated. I got an email from a friend that I hadn’t spoken to in a very long time – probably 3 years. I could tell it was sent to his list but I flagged it as important and emailed him back a couple of days later saying we’re due for a catch up. On that same night as we’re all sitting around watching Dick Clark’s Rockin’ Eve, I touch my neck and discover a lump. I didn’t say anything but immediately went to the bathroom to investigate in the mirror. When the girls weren’t looking I showed my husband. I have to admit I did get freaked out -but immediately rationalized that it was a swollen gland from the cough I just had and it would go away.
Days later I’m on the phone with my friend catching up on 3 years worth of missed time. He then proceeds to tell me that back in the summer he discovered a lump on his neck and it turned out to be cancer!!! My immediate response “I have a lump also!!” Holy shit!! What freaking synchronicity!!
I told him I believed mine was from my cough but he encouraged me to go see an ENT doctor just to make sure. And this my friends is how the whole process started!!
January – March 2018
From this point on I was consumed with getting this thing taken care of and figuring out what it was. The ENT doctor didn’t seem concerned since I told her I was just getting done with a cough but sent me to get an ultraound anyway.
The ultrasound led to me getting my thyroid tested and seeing my main doctor for a check up. Everything was fine but they wanted me to come back in 6 weeks for another ultrasound. My thought was why not just biopsy it now? Why wait 6 weeks?? Instead of listening to my intuition, I waited 6 weeks as they suggested.
I thought I should get everything else checked as well so I had my gyno appointment, mammogram and a colonoscopy. I was clear all over!
I was doing a lot of research about lymph nodes and inflammation and started to really change my eating habits. Back in July my daughter decided to go vegan so out of sheer laziness and not wanting to cook restaurant style I started making changes to our diet anyway. I noticed that each time I ate cheese (everyday) I had a strange feeling in my neck – like someone was strangling me so I decided to eliminate cheese. This was so hard!! Cheese was my favorite food and I ate it ALL THE TIME!!! I also stopped eating red meat and sugar and started drinking green tea, and incorporating ginger, turmeric, kale and blueberries into my meals as much as possible. I was on a clean eating mission! I started to look at food as medicine.
On Valentine’s Day my tooth started acting up again and got much looser and more painful and I got to thinking that if it’s infected, it may be spreading to my neck so this time I was ready to have it extracted. Happy Valentine’s Day to me!!!
In March I had my second ultrasound and this time they said the lump changed. It was slightly bigger than the last time. As one doctor told me – bad things don’t get smaller. Now they wanted me to get a fine needle biopsy. I had to research with my insurance company to find ENT doctors that did this kind of procedure. They gave me a few names and I chose one in Manhattan closest to me.
After meeting with this ENT doctor he thought a surgical biopsy would give more information than just having a needle biopsy so again I listened and had the biopsy the week after.
During this time Jon’s health was rapidly declining. Nothing seemed to be working. We all started researching for alternative solutions – following one lead after another. I
On March 24 after a photo shoot, I stopped by his home for a visit. He was thinner and weaker than I had ever seen but his spirit was still Jon – hopeful as ever. He looked at me and said “Stace – you have great hair!”
For months I had been sleeping with my phone next to my bed just in case of an emergency. In minutes I could be down to the city to help/ In the middle of the night on March 30th I got the text I had been dreading. Jon was gone.
After barely sleeping, I got up to head into the city to meet with my doctor to get the results of my biopsy. I wasn’t stressed because I wasn’t really thinking of me. My thoughts were with Jon and Nancy and how I can’t even believe what had happened. It never even occurred to me to bring someone with me to get the results.
So when the doctor calmly and quietly told me that he took 3 lymph nodes out of my neck and 2 of them were tumors that tested positive for HPV, I didn’t really react. He never used the word cancer and what the heck was HPV? I have to say, there’s a big difference from hearing “tumor” vs. “cancer”. It just didn’t register. He explained that they still need to find the source – where it was coming from. Since the tumors were in my neck it was assumed the source was somewhere in my throat so he was going to refer me to another doctor to do a laryngoscopy. A what?!?
As I was about to leave it finally hit me and I turned around and said “wait – is this something I need to panic about?” Although he calmly said “no – it’s never a good idea to panic”. He did have his assistant call the other doctor to see if he took my insurance and to see about making an appointment for me. That seemed odd. When does a doctor make an appointment with another doctor for you? I knew this was starting to get serious.
When I got home everyone was out so I had privacy to make some calls. I called my friend that had gone through this months before. Having been a medical doctor, he wanted to take a look at my pathology reports to review. He read through and asked me what my doctor had told me. I told him to my understanding 2 lymph nodes tested positive and something about HPV. He said “Stacey – you know you have cancer, right?”
Yes. No. I mean yes. Wait, what?!?
He urged me to reschedule the laryngoscopy as my original appointment was almost 3 weeks away so I did and was fortunate enough to get one on the following Monday.
I had to wait until my husband and I were alone and I said “holy shit I have cancer!!!” He looked at me in disbelief. How crazy it felt to say those words especially on the same day that my friend lost his own battle. It felt like I was talking about someone else. Was the research I was doing for him… actually for me?!? I definitely had felt off for the past few months but not sick enough to say I had cancer!
I didn’t even have time to process all that was happening because hours later I had to be at a family Passover dinner and I was in charge of making the matzo ball soup! Priorities!!! It was all so beyond crazy that it was starting to becoming comical .
How would I make it through Passover dinner and then Easter and my daughter’s birthday only days later? It was challenging to say the least especially because I wasn’t telling anyone. The dinner conversation seemed so trivial it was hard for me to concentrate. I was mentally and physically exhausted and everyone thought it was about Jon – which was only halfway true.
This post is long enough and I so appreciate you reading it! I’m breaking the story up into multiple posts so as not to overwhelm anyone. You can continue on to Testing & Diagnosis here.
