If you've made it to my page, welcome and I'm happy to have you here for support along the way.

It's been a year of many challenges and one that is testing me over FEAR (thank you Mom and Dad for naming me Joy Faith . I won't go into much detail on some of my personal challenges but those that are closest to me know.

My story here begins back in February, when I visited my doctor for an annual checkup. I checked out fine in all areas except I had one nagging and recurring hoarse throat and swollen lymph node I had been seen for over the past couple of years. I had recently noticed that a lymph node on the left side of my neck was visible and swollen and slightly tender. In the past my doc had given me antibiotics and diagnosing the "hoarseness" as a temporary sinus infection, bronichitis, etc.

This time was different...I knew that I had been under a ton of stress (marriage ended last November but I won't go into detail on that), and still managing through the unwinding of a 22 year marriage took it's toll on me I'm sure. So, in order to get my medical records updated as insurance would more than likely change I wanted to check every nook and cranny physically and leave no stone unturned. Can I just say that being faced with this huge change in my life -- this was a blessing in disguise as it uncovered what I'm about to share with you.

So, back to the regular check up - my doc agreed we needed to take a closer look and immediately referred me to the ENT. My doctor did a manual throat exam and palpation of the lymph node and decided he'd like a closer look. He reassured me that whatever it was we would get answers and if by chance it turned out to be a cancer we would create a plan. Sounded good to me and me being the type A "let's just get it done", I wasn't stressing much...yet.

So off to an imaging center In mid-March for what should have been a core biopsy on my lymph node in my neck, turned out to be a FNA (fine needle aspiration). The radiologist just didn't feel comfortable attempting the core biopsy in their facility as it was too close to the caratoid artery and I fully agreed as it wasn't in a hospital setting and should anything go wrong I could have been in trouble. So waited for a few days to get these results from the FNA and as I read them it said "atypical squamous cells suspicious for neoplasm" of the lymph node. The lymph node was large and not typical so that was concerning. So at this point I'm thinking I have lymphoma (BUT I DON"T have this type of cancer -- read on)... OF course, me being me immediately went to Dr. Google and learned that this could be cancer. Oh, I also had an MRI done at the same time which was inconclusive.

So now we're into April which coincidentally happens to be Head and Neck Oral
Cancer Awareness month. Little did I know how meaningful this would be. So back to the ENT, who wasn't confident in the results and needed more answers. At this point he sent me to another facility to get a full core biopsy on the lymph node and back to the imaging center for a PET scan of the head/neck and upper body. That procedure was painless (thank you Verced and Fentanyl push for the biopsy). And then the waiting game...which honestly can be the worst part right? I went ahead and scheduled a follow-up with the ENT for the end of the week. In the meantime, I had received my PET scan results (early May now) on DVD (big mistake to give me data that I can play doctor with) and my online health portal happened to release the test results into my profile so I actually read the results before the follow-up appointment. I knew I had cancer but just wasn't sure what type until I read the reports. So one of the initial reports kept referring to the lymph node as being "malignant cells and malignant cells inflitrating lymphoid tissues. The overall findings are diagnositc of metastatic carcinoma and a squamous cell carcinoma is favored." (still sounding like lymphoma to me at this point). When I popped in the PET scan DVD I was immediately thinking I had cancer throughout my body (note to others - DO NOT as much as you want to know, DO NOT look at PET scan DVDs as they will freak you out). I swore I saw my entire body light up and was convinced at this point it (whatever it was) had spread. Thank God I was wrong about this!

So I needed some moral support to go to the ENT appointment that Friday in May and took one of my dearest friends. She and I met when she came to my bootcamps many years ago and have stuck beside each other through many of life's challenges. If you're facing anything like this - start calling on your "village" and use them as you'll need them. She has been a lifesaver along with many other dear friends. So she was my ears and recorder and I was unusually calm. I knew that I was already declaring myself a cancer survivor before I got the final diagnosis. So he came in as calm as usual and of course had to do one more manual palpation of my throat - this is something I'm learning that all Head/Neck doctors love to feel for themselves regardless of what any PET Scan or biopsy shows. (can you say gag reflex?")

So he does the exam and says we'll review the PET scan details in a moment, but you do have a cancer and the source of it is in your left tonsil! It did spread out to one lymph node on your left side which is typically how patients find out they have cancer! It's like the red flag as you would likely miss most of these until it's progressed further along. Thankfully in my case I had caught it early - very early and it's in the T1/N1 stage (which is the tumor grade and the nodule grade) 1 is a very good number. He went on to say that this cancer is caused by either heavy drinking/smoking (not me) or the HPV virus. I had already read up on this cancer and had to believe this was the root cause.

The ENT then said he was going to refer me to the best Oncology team around and got the ball rolling to get me over to the treatment facility. So, I enlisted another friend's moral support, for the first "Tumor Board meeting" in late May and she drove and recorded the 4 hour meeting. It was quite impressive and I knew immediately I was in good hands. So, imagine sitting in a large medical room and being sat in what is like a dental chair and then 20 or so doctors/white coats enter the room! I was a bit overwhelmed thinking are they really all that interested in me or is this something really juicy they want to get their hands on? So this initial intake meeting was directed by the Chief of Oncology for Head and Neck, an old school and highly respected Oncology surgeon and Professor, and the Chief Professor of Radiology Oncology. They of course had to put their hands down my throat to confirm for all the docs in the room (big screen behind me for their viewing pleasure) that this was a tonsil cancer. The speech pathologist then gave me a chewing and swallowing test (think blue coated graham crackers and blue applesauce, and eating it in front of 20 docs as they watch me swallow on the big screen). They all bantered about some medical jargon discussing various treatment options, clinical trials, etc. and mentioned we would reconvene in a smaller room with just the two disciplines. That sounded good to me!

Off to the smaller room now where we met with the Surgeon and the Radiation Oncologist who gave their two points of view on treaement options which I'll summarize for you here;

1) surgery to remove the cancerous left tonsil and in same setting neck dissection to remove all lymph nodes on left side. IF my cancer was HPV - P16 related I would qualify for this newer type of TORS (Transorbital Robotic surgery) for the tonsil removal of the cancerous node and possible follow-up with radiation treatments should they not get clear margins of the tumor. They ordered a follow-up stain of the prior biopsy to test for P-16 should I opt to go this TORS route. So a follow-up appointment was made with the Chief of this Surgery, who would review all my tests and discuss this option the following week.

2) Radiation - this was discussed by the Chief of Radiation Oncology. Another super smart female doctor who was very straight forward in what the radiation entailed and what I could expect as far as results. She said with my type of cancer HPV-16 Oral/Tonsil Cancer which is a very treatable cancer (vs the oral cancer caused by smoking/drinking), and only one lymph node affected she would design a 6 week course, 5 days a week of radiation to get it all. She believed it would yield an excellent chance of success. She also noted that her colleague on the other side of the fence treatment wise who she texted while I was in the consultation would be happy with me to discuss the TORS procedure should I opt for that. She stayed very neutral but also indicated that she would more than likely be seeing me post TORs surgery to follow-up with a course of radiation....hmmmm that was a lot of food for thought!

I had the entire weekend to really think this over. I had it by the end of the weekend but also wanted to keep an open mind going into these next and final meetings before I gave my final decision.


Early June - meeting and I called on another member of my "JOY Fight Club" (my new name for my village). So my dear friend drives me over to record the day! The doctor walks into the room fresh off a surgery, and is like a 50 year old bundle of energy and lights up the room when he walks in and knows how to put your mind at ease immediately. .He of course wants to put his hands down my throat again, which I try to persuade him otherwise since "we already know what's there!" but if he is going to be driving this car he wants to get behind the wheel and see what's under the hood I guess! Ok, more numbing spray and a camera up my nose, down into my throat while he puts his hand on my tonsil. He points out the tumor which to me looks like a blood vessel but that's why they pay him the big bucks not me He then goes onto to describe what would be a 5 hour surgery called TORs and the neck dissection. He said the reason it's so long is they take a break after they excise the tonsil ad a sufficient margin around the tumor to take it down to pathology where they see if they feel confident they got enough. Then they come back and either do more or close me up and then move onto the neck dissection. The recovery is definitely painful with the worst sore throat you've ever had and a swollen and sore neck and if they feel that it's clear then I'm all done - no radiation BUT he said he couldn't put a number or odds on that happening and that I would possibly need the follow-up course of radiation albeit slightly lower dosage (like 3%). Oh and they got the HPV-P16 results and I did test positive. High fives around the room as if I were to get an oral cancer this is the cancer to get as it's highly treatable either way.

I had a page full of questions for him which he was kind enough to answer but one that stuck out to me, well actually two was; How many of these procedures have you done? And the second question which was answered above was, Do all options lead to radiation (answer being "if you're a gambling woman you'd roll the dice and hope you could get clear margins but I can't put a number on if you would or not")

Question #1: How many of these TORs procedures have you done?

Answer: 0 but he qualified it with saying he had assisted in the development of this procedure and had done some overseeing in France, had written a paper, etc. He also had 2 or 3 surgeries using these technique lined up in June. Ok.. another moment that gave me pause...

The Radiation Oncologist came in the room as he was finishing up and I asked them both to clarify the difference in radiation post surgery option vs. radiation only. The doc indicated it was minimal and it would be like being 8.5 months pregnant vs 9 months pregnant - no discernible difference - you're just as uncomfortable either way.

So, with all of this information I knew for sure that my decision to have Radiation only. I knew I didn't want to have an invasive surgery which would be a 6 week healing time before I could start radiation which I would more than likely need either way, or just do Radiation only and get this cancer out ASAP!. I chose the Radiation route and was ready to move forward.

So this week, I had all my Radiation planning appointments which I'll note below and got my Radiation schedule. I start Wednesday, June 14th and finish my last treatment on July 31st!

Planning meetings consisted of getting fitted for my own personal Joy Fight Club Mask, meeting with the Nutritionist, Social Worker, and Speech Pathologist (exercises to do for swallowing and tongue muscles).

Oh, and if that wasn't enough excitement I was also biopsied for a potential something that showed up in a scan on my thyroid. Another ultrasound and a Fine Needle aspiration this week proved it was benign, my plate is full right now!

So the fight began a while ago but the real fight starts next week! Radiation will be no walk in the park and it will get worse before it gets better. I'm so not used to being the one needing help or needing motivating but it's ok to ask for help and I know I'll be calling on my Joy Fight Club in the weeks to follow.

If you're interested and want to be part of the Joy Fight Club Im sure there will be things I will need down the road.

As much as I love to eat and eat really well I will more than likely be drinking lots of water and lots of shakeology with loaded up healthy fats and protein! Radiation will take it's toll on my throat and mouth so as much as I'd love offers of meals and food I will not have an appetite or desire for it (at least that's what my docs say but I could prove them wrong"

I am grateful for my two sons who are my world and will be my rocks through this as well as my family and that includes my Fight Club friends! I am not interested in the why this happened to me (why not I say?) but am so encouraged to know that this is in my path for a reason and I can't wait to see how many lives this journey will touch as a result.

Stay tuned as I walk this journey!

Joy Faith

Welcome to OCF, Joy! You certainly wrote a very long first post, probably the longest one we ever had You are in the right place to get help with info and support.

Im sending you a private message (PM). Click on the tiny flashing envelope next to the My Stuff tab.

Hi Joy... I just finished 7 weeks of radiation and 6 chemo sessions. Into my 3rd week of post treatment. Your throats will get sore from the radiation and your desire to eat will decrease as well. One thing I do suggest is a feeding tube. The tube has been my best friend. I was hesitant at first, but well worth it after I got used to it. Best wishes and any questions please ask ...

thank you so much for the advice. I'm hoping I won't need the feeding tube but definitely will do whatever it takes to get through this. What stage were you and was it in your tonsil as well? (I'm stage T1 N1) and doing radiation only for 33 treatments.

I had a tumor on my epiglottis. Stage 2. I did 35 Rad treatments and it will take its toll. I lost 44 pounds. I am still tube feeding 3 weeks after treatments. Thankfully I was a big man and had some to give. I have had a good support system as well and tried to stay upbeat and positive through all this. Any questions ask... I wish you well!!

Hi Joy!
I did TORs 5/9 at Stanford with Dr. Holsinger. Started rads at Stanford 6/13 with Dr. Le. I chose TORs knowing we could identify the primary (mine was unknown) with an 80% likelihood and could then reduce the average radiation intensity from 70 to 60 Gy as well as reduce the primary radiation volume. I am having prophylactic radiation on both sides of the neck at lower intensity.

Be sure to do the swallowing and neck exercises and keep walking/exercising as you can. I do my rads in the afternoon on linac 14. That team is the best!

If you'd like to write, speak, or meet in person since we are both getting similar treatment in the same time frame at Stanford, feel free to direct message me.

Best of luck!
Stef

Hi CougarDad,
Like Joy, I am getting treated at Stanford and they are very anti-feeding tube. Less than 10% of patients get it.

If you lose more than 8% of your body weight they will have you get one. However they track weight at every visit and the case management team is very persistent about you keeping up the weight.

Hi Joy Faith,
I thought of you when I was down at Stanford for my check-up last Thursday. We've probably seen some of the same doctors and I can say I've been very happy with my care over this seven year journey. I am one of the 7% who get this cancer with no known cause (no HPV, no alcohol/tobacco). They describe it as "genetic factors". I have had radiation twice and as others will tell you, it's best to prepare yourself now by trying to eat well before you may lose your sense of taste. My radiation oncologist recommended Scandi shakes (which they used to sell in the Stanford Walgreen's but also can be purchased on amazon) because I couldn't stand the Boost and Ensure drinks when I needed more calories. You mix Scandi with milk so it's more like a milkshake. I also purchased the vitamix blender which still serves me well when it's too much work to eat a whole meal, I just blend protein powder, fruits and veggies for a great nutritious shake.
I agree with Steph H that the swallowing and neck exercises are important as well as getting out and walking every day. Stanford is a beautiful area and even the shopping center has gorgeous flowers every season. I wish you the best and a speedy recovery when your treatment is done. A favorite verse I like, that goes well with your name is, "A joyful heart is good medicine."