Part 4: The Diagnosis

We all talk about how slow time is in the time of Covid, but the week seems to pass even more slowly. We started quarantining on March 16th, six months and five days before I noticed the lumps on my neck. Those six months seemed like years. Now time has really begin to crawl. At this point, it’s just nine days since I discovered the lumps. Feels like years and years.

All I know at this point is that I have cancer in at least two lymph nodes and on the base of my tongue. I still hold out, way back in my mind, that this won’t be cancer. I mean, all they have is grainy gray pictures. It’s September 29th. I have appointments scheduled with my regular ENT, Dr. L on October 2 and Dr. H (a Mayo head and neck surgeon, and Dr. P (a Mayo radiation oncologist) on October 12th.

For now, I am keeping my regular ENT appointment, even though I’m pretty sure Mayo would be the right choice, based purely on reputation. I need an Ultrasound Guided Biopsy so back to the medical imaging office. I had to reschedule my biopsy from Tuesday to Wednesday.  The one-day delay feels like a week. About this time, I realize how little I know about what I have and all these tests. The person rescheduling my appointment asked if I was having an “insert unknown word here biopsy”.  She might have well been speaking Russian.  Man, do I have a lot to learn.

I am still having trouble talking to folks I know about the cancer (which by the way I still don’t even know the name of!), but I am able to talk to bureaucratic folks about it.  This is really scary and confusing.  I haven’t thought much about “why me” yet, but I’m sure that will come.  Right now, I just can’t project myself into the situation where I talk openly about this to friends and family, that either already know or who don’t know. 

Eric, Irene, Lee, and Heidy are really being supportive.  We all talked on zoom, to provide an update and I had to step away for a bit. They have never seen me cry or be so sad, and I think they’re shocked by it.  I am not quite sure they know what to say, but they are really trying.  Today, I asked them to work with Suzy and Schwab, so I don’t have to think about the money side.  We have great insurance, but this could be heading towards big bills.

I do know that I will never be the same.  I can already feel like I’m experiencing what most people haven’t.  I will learn a lot about myself and a lot about others through this.  I am not sure how strong I am, but this will show it.  I do know that I am happier to have Suzy with me than I even realized was possible.  I know she will be there for me every step of the way.

Suzy told her brother and sister. For some reason, it bothered me when her sister told my nephew and niece.  I’m not sure why – I don’t mind that Mike and Cindy know.  I’m glad they know.  I guess I wanted to control my message – what do I have, what’s the prognosis, what’s the plan, how long will it take to get back on my feet. Why worry people before I need to?  I don’t even know what I have, and I’m petrified to show that I’m so scared and worried.  My nephew Mike and my niece Cindy both reached out with some wonderful words, and it made me realize that I’m glad Donna told them.  I realized that the more support we have the better.

Today, September 30^th, I had an Ultrasound Guided Biopsy.  Basically, they get cells from the lymph node to show what kind of cancer I have.  A month ago, I would have whined about the discomfort.  Now I know that this is just the beginning.  No need to whine with these little procedures.  For the record, they numb it with Lidocaine, then put a needle in the lymph node, pump it up and down and side to side to extract cells to send to pathology.  They do it four times.  Uncomfortable, but not awful.  I am sure worse tests are on the horizon.

Alex sent a text to her dad to set up a discussion.  Lou had the same cancer four years ago, as best as I can guess since we still don’t know exactly what I have.  Suzy and I talked to him about his experiences. His cancer was mostly in his lymph nodes, and just a bit on this tongue, the opposite of mine. We talked about his treatment, recovery, side effects, etc. Again, the most encouraging thing is that he recovered and is leading a full life.

I am getting less emotional each day.  I was able to talk to Art and Paul yesterday without getting too emotional.  That’s a big jump for me.  I am sure this will change as my diagnosis comes in and the treatment plan.  But that’s for later.  Everyone is offering to help, but the pandemic is limiting.  They’ll be able to run errands or bring food, but the ability to come and hang out, or drive me to an appointment, or comfort Suzy in person just isn’t there.

I am leaning on Suzy very hard, and realizing that I need to save this for later days.  I am sure it is going to change our relationship from wife to caregiver.  I am trying to take care of business as much as I can, but we can see that I won’t be able to once treatment starts.  So far, she seems to be doing well, but she is definitely feeling the stress.  I am not sure what I can do about it.  She needs to have a procedure for her swallowing difficulties.  I am worried about her being in the hospital recovery room with Covid and everything.  I am hoping that Lee can take care of her that day, at least for the hospital part.  I can care for her once she gets home.

During this time, I realize that I am using a combination of either I or we when talking about it. I have the cancer, but WE are having the test. The only time I think in terms of “I” is when I imagine pain. We go to appointments, We make the decisions, We will suffer with the side effects, but I am going to experience the pain and discomfort.

On Friday, October 2, we met with Dr. L, my normal ENT, but he does not do robotic-assisted surgeries for Oropharyngeal Squamous Cell Carcinoma.  (Finally, a name for what I have!) With the CT scan but without the biopsy result, he’s making some assumptions. I have a tumor that is in the middle of my tongue, on both sides.  This is a difficult surgery and Dr. L suggests radiation and chemo only.  He is going to have a Radiation Oncologist contact me for a consultation.  He was very positive about the likelihood of success.  He said I would have 6 weeks of radiation, 2 months of intense discomfort, and since swallowing will be so painful, a feeding tube into my stomach for at least some of that time.  In all likelihood, it would take a year to get back to normal.

At first, I was relieved: I am most likely not going to die. He said none of his patients have died from this. But we didn’t get a survival percentage, over a year or 5 years or whatever.  Later, it’s hard not to google, and the survival rates are closer to 78% over 5 years if it’s local, and less than 40% if it’s regional.  Mine is regional.  I wish I wouldn’t have googled. I couldn’t get over that I only have two out five chance to be alive in 5 years.

I’m really looking forward to some closure on the diagnostic portion of this. I want to know what I have, what’s the plan, what are the risks and when do we get going.  The sooner the better. 

The results from my needle biopsy finally came back – non-diagnostic.  We had to google to see what that means (they didn’t get enough cells to make a diagnosis). I have to go in again for a more aggressive biopsy.  Today (Oct 6) I had a Covid test, it’s negative. With cancer, we sort of forget that Covid is still here. Friday Dr. L will perform a micro-direct laryngoscopy with biopsy — he’ll surgically remove a small piece of the tumor from my tongue under general anesthesia.  This is all going really fast. It feels like I’m on a roller-coaster that changes as I go through it. 

In the back of my mind, however unreasonable, I keep thinking they weren’t able to find any cancer cells, so maybe I don’t have cancer!  A silly thought, but the thought is there.  It could happen! Like Trump says, “It will magically disappear, somehow, I hope!”

On a lighter note, I have coronavirus hair, long all over with a mullet like Joe Dirt.  Tami, one of Suzy’s closest friends  gave Suzy lessons on how to cut my hair.  Tami even videoed, with a step-by-step voiceover, of a man’s haircut (thanks, Jacob). It turned out great, especially given that Suzy had never cut hair before.  I think Suzy will be my hairdresser for now.

I have purchased a few books on cancer:  1) The Layman’s Guide to Surviving Cancer: From Diagnosis Through Treatment and Beyond – was written by Howard Bressler who had leukemia, married with two young kids.  Pretty informative about the generic things to expect.  The last 2 or 3 chapters ripped by heart out, as they discussed what if you die.  Made me cry realizing the weight that will come down on Suzy given the HPV issue.  2) NCCN Guidelines for Patients: Oral Cancers – which is a short book describing the cancer, the treatments, cancer stages, and some high level information. It’s good because it keeps me off the internet and I am able to read it before the Mayo appointment. 3) Looking Forward: The Speech and Swallowing Guidebook for People with Cancer of the Larynx or Tongue – has lots of great information, much of it provided by the Mayo Clinic and covers the two largest risks (besides death), and 4) No Quit in Me: My Wild Ride With Tongue Cancer by John Kuby – an excellent book that I’ll come back to.

I am beginning to realize that I have a short list of truly close friends.  I’m going to have to work on this when the coronavirus quarantining is done and my cancer is under control.  I traveled for many years for work and skipped the friends thing because of it.  I have a reasonable number of close friends here, more than I ever had in Modesto. I am going try to get out there more and enjoy life and people more when life opens up.  It’s odd because my friends and Suzy’s have offered to help but there isn’t much they can help with due to the pandemic. 

Suzy and I had a big day at Mayo today, October 12th.   We met with two doctors: Dr. H, a Head and Neck Surgeon and Dr. P, Radiation Oncologist at the Mayo. I do have Squamous Cell Carcinoma in the base of my tongue, and in my lymph nodes (like the coronavirus, it did not magically go away!), and stage 3 (regional area). Some important, optimistic factoids from the appointment! 1) Not a death sentence, 2) 90% 5-year survival rate, 3) It’s the most common head and neck cancer 4) It’s slow growing so we can take a bit of time to decide. Repeat number 1) Not a death sentence.

Basically, there are 2 paths that both lead to the 90% success rate. They can use a robotic device to perform surgery to remove the tumor, they can remove all of the lymph nodes in my neck, followed by radiation. OR they can skip the surgery and do chemo and radiation. As Dr. P put it, there are 2 yellow brick roads I can follow, but they lead to the same place.

It’s funny he used the Oz analogy, because last week when I found out I got into Mayo, I was so happy I actually said, “It feels like I’m going to see the Wizard!” The real wizards!

In both options, it’ll be a year or two to feel back to “normal”. The surgery risks center on swallowing, speech, scarring, and weight loss. Chemotherapy long-term risks are many but the one that worries me most is hearing loss. Radiation risks, some permanent, some temporary, are damage to salivary glands, taste buds, and skin, plus weight loss (difficulty eating), and dental problems related to having little to no saliva.

Tomorrow I have a PET scan (positron emission tomography) – basically they inject radioactive glucose into you, wait for an hour, then take a 3D image of my entire body to show if there is cancer anywhere else. If there is, the option becomes chemo and radiation, not surgery. The radioactive glucose speeds up the cancer cells so they show up on the images. We’re learning a lot of medical stuff.

We leave the appointments thinking that the chemo/radiation is the yellow brick road for us (see there is the WE). Every doctor I’ve seen so far has pointed out that I have a relatively small mouth and a very large tongue, making access to the base of my tongue difficult. There’s even a medical name for big tongue — again, we’re learning a lot of medical stuff.

On Wednesday, the PET scan results came in showing no additional cancer.  Big sigh of relief. Now we have to wait for the data to be presented to a multi-disciplinary committee called “The Tumor Board.”  We have nothing to do but wait.