Signs, Symptoms, Diagnosis and Where We Are Today

This blog post was written by Kevin Speier, one half of the cofounding husband/wife duo of Packed Kits. Kev was diagnosed with Stage IV head and neck cancer a few months back and his journey and battle inspired the couple to create this company. This post is a recap of where they've been and where they are in treatment and life. 

On October 14, 2015 (conveniently two days before my wife Angel’s 31st birthday) an Ear, Nose and Throat Doctor took a look inside my mouth for a half second, then looked back at me with inevitable concern. He was 99 % sure he visualized Stage IV Non-Squamous Cell Carcinoma, but needed a biopsy to confirm his diagnosis.  The doctor stuck a large gauge hollow needle to remove a cylinder of tissue for the biopsy through the mass in my tender, swollen tongue without anesthetic—I nearly passed out from the pain, no lie.   He finished his assessment, which consisted of further findings of lumps in my neck meaning that if it was cancer, it had spread…at least to the lymph nodes of the neck.  So we left the clinic with a “Hey bro, we are pretty sure you have cancer, which has spread and will require major facial surgery and reconstruction, but this won’t be confirmed for five days.  But don’t worry too much…peace.”  I’m sure it was much nicer than that, but with the latest prognosis playing over and over again in my head, that is what it felt like.

I had a bad feeling about the sores and pain that had been getting progressively worse in my mouth over the previous five months.  But I’m 32.  Is it really possible for this to be happening?  Of course it is…shit happens every day to far better folks than me.  Happy birthday babe, I lovingly got you a gift full of questions that all suck: “Does your husband have cancer?” “Will he survive?” “What course of medical action will they take, if any?”  “Can we handle this situation financially?”  “How the hell are we going to pull this off with a six-month old baby and three-year-old?”  “Don’t you love the suspense of the unknown?”  “What the fuck happened?”  “What an ass, can you forgive me please?”

The biopsy came back positive as we were anticipating.  I underwent a PET scan for imaging of the cancer to accurately determine how far it had metastasized.  Thankfully, the cancer remained relatively localized and had only affected an undetermined amount of lymph nodes in my neck, but had not spread below my collar bones.  I was then referred to the University of California at Los Angeles’s Head and Neck Surgical physicians because my case was too far advanced to be done in my hometown of Santa Barbara.  The physicians I was referred to at UCLA are some of the best in the world at what they do and had performed this surgery hundreds of times with overwhelming success.  The surgeons explained to me that if this cancer does not go below the neck (like mine), there is strong clinical evidence supporting its treatability with an aggressive approach.  The idea at my age was to hit this with everything we have, which meant surgery, followed by chemotherapy and radiation.  They fast-tracked the surgery to be scheduled for November 11th , hoping to minimize the amount that it spread, and that was the plan.

The surgery entailed cutting my neck open from ear-to-ear to remove affected lymph nodes, amputation of about 80% of my oral tongue and tongue base, pulling 6 molars, taking a deep  3-inch-wide by 6-inch-long skin graft from my left wrist to build my new tongue, removing my radial artery and nerve from my left inner elbow to my wrist to provide circulation and sensation to the newly implanted tongue fed by the carotid artery and  nerves from the right neck, and lastly a superficial 4-inch by 8-inch skin graft on my left upper thigh to cover up the graft removed from my left wrist.  To top it off, I had a tracheotomy performed (puncture through your neck into windpipe) to maintain an open airway in case of swelling or bleeding inside my mouth during recovery.  I also had a feeding tube inserted through my belly and into my stomach so I could receive nutrition through this tube while my mouth was healing.  There was a possibility that the surgeons were going to need to break my jaw for accessibility issues to perform the surgery.  Fortunately, they were able to manipulate my mouth accordingly and avoid this, greatly minimizing my recovery time.  I can honestly say that my surgeons are wonder workers.  Dr. Sercarz performed the neck resection and tongue removal with minimal scarring.  Dr. Blackwell harvested and implanted the skin grafts, and somehow turned my skin from my arm into something that resembles a tongue that has feeling and blood running through it...what?  God is gracious.  We are so fortunate to have access to world class healthcare.

I feel blessed to be alive eight months after my diagnosis, although it has been a tumultuous time in my life.  I will tirelessly work to make the most of the time that I have been granted to spend with my family and friends on this earth.  Currently, I am undergoing my last round of chemotherapy, with two immunotherapy treatments left, and there are positive signs that my cancer is in remission.  I will have another PET scan to determine the presence of cancer (or hopefully the absence, God willing) in four weeks once all my treatments have been completed.  Depending on the results of the PET, the preliminary plan as of now is to begin a different type of immunotherapy treatments for an entire year.  The immunotherapy drugs are designed to program my own immune system to combat the cancer, eventually allowing the body to self-heal and rid itself of the disease.  My oncologist has chosen the latest immunotherapy drug for my individualized treatment plan due to it’s long term viability for the type of cancer I have.  The hope is that after a year, I will be completely cancer free, which in turn will eliminate the need for further treatment.