Sand Dunes & Daisies

My son graduated from high school in 2012. At the Baccalaureate service, the Grandfather of two of the graduates gave the message and it’s one I still haven’t forgotten, almost 11 years later. The title of his message was “What to do When you don’t know What to do”. Fitting for students about to strike out on their own for the first time and quite fitting for the rest of us who have difficult decisions to make in life.

I’ve had some difficult days lately. This past Friday, made 8 weeks since my 4th surgery and if I’m completely honest with you, it’s been harder than I expected. The first few weeks were really undescribable. I felt so unprepared for the aftermath of what happened in the operating room. I could not eat anything except applesauce or yogurt and in the beginning, it was hard to even get that down. I couldn’t take my medication without it being crushed and mixed with something. The pain was nearly intolerable and the swelling only exacerbated it. I had to sleep basically sitting up for weeks – and 8 weeks later, I am still sleeping in my recliner because the pain and swelling from laying down flat is just too much for me in the mornings. I have daily headaches from the fibrosis of the muscles and tendons in my neck. There was more nerve damage than I was expecting. I was angry that they really didn’t prepare me for all of this. But I think if they had, maybe I would have opted out of the surgery and just let the cancer continue to grow. So, in the end, I guess it’s a good thing I did – and I’m getting better all the time, thankfully.

I have thought about this sermon so much over the last few weeks because I was in a spot where I didn’t know what to do. I prayed and prayed for God to give me discernment. I asked other’s to pray for God to send me the right answer for me. See, I had already decided against doing treatment. Their plan for me was 6 weeks of radiation, 5 days a week.

Now, for those of you who say (and have actually said TO me..) it’s ONLY radiation, be thankful you don’t have to do chemo….let me say – PLEASE don’t ever utter those words to another person on this earth. Each cancer is different. And each person’s journey with this disease is different. Chemo isn’t an option for me. It doesn’t work on my cancer. You can’t group all cancers into one category….none are the same as the others. Just because your husbands mama’s sisters husband, made out fine doing radiation for his prostate cancer doesn’t mean it’s the same for someone with a different cancer in a different place. Head and Neck cancers are some of the hardest and most delicate places to treat. If you haven’t, you should read about the difficulties that come with head and neck cancers. I know most people don’t spend their time reading medical journals or watching surgeries on YouTube, but I do. Because, well….knowledge is power. The amount of vital structures in your neck is unbelievable. Now, since I’ve had a thyroidectomy, 3 radical neck dissections and retropharyngeal neck dissection, I have very little fat or any other protective structures left in my neck on the left and in the middle behind my throat. The Radiologist told me that they had to cut the muscle that helps you swallow in order to get all of the mass. In my surgical report, I read that my internal carotid artery was knicked and I had a slight bleed, which could have been really bad… Thank God my Daddy prayed over the surgeons hands before my lengthy surgery.

Because of the issues with swallowing and eating I already have, that much radiation will cause scar tissue on that muscle, which already has scar tissue from the surgery. There is a very good chance, I could end up on a feeding tube. I will have fibrosis of the structures in my neck and my carotid arteries will have a build up of plaque as well. It will burn and blister my skin. It will cause dry mouth and a lot of people end up with trush and mouth sores. Top it off with the fact that for 16 years, I’ve lost salivary glands and a parotid gland, and have been dealing with dry mouth and dental problems…and you cannot have radiation with broken, cracked or injured teeth. So, I have to have my teeth removed and they will have to heal before they can do radiation. The reasoning behind that, is because I could get an infection and it could go straight to my heart. My radiation would not be a targeted radiation. There is no single tumor to focus in on since it was removed during surgery. My jaw will receive some radiation too, which I desperately DO NOT WANT since I already have some bone loss there – but it won’t be the full brunt of it, thankfully. What’s left in my neck are miscroscopic cancer cells, which have continued to grow over the last 16 years, so radiation will be aimed at the entire circumference of my neck, from below my jaw, to above my collar bone. This is pretty much a last option to try and keep them from coming back so quickly. The Radiologist feels that since the cancer got into the soft tissue in my neck, it would come back sooner, rather than later.

I was very much at peace with my decision not to do treatment and thankfully, my family was behind me 100%. I wanted to enjoy a good quality of life rather than focus on quantity. Now, no doctor can tell you really, how much time you have left. Only God knows the day and the hour on when He will call you home. But of course, I asked his opinion. He said there is a 50% chance it is going to come back whether I do treatment or not. 50%. Not at all what I wanted to hear. When I asked about prognosis, he said without treatment, it could come back in a few months or a couple of years – and he feels like WITH treatment, I will have longer before having to deal with it again. I did however, make the decision that this is my last surgery. If it comes back again, I have opted against surgery or treatment. For those of you who think I’m crazy for saying that – well, you aren’t me. And you haven’t lived the last 16 years of my life and honestly, I am tired of fighting something that will never completely go away. I’m not 25 years old any more. I’m about to turn 55 this month – and unfortunately, this cancer has gotten more and more aggressive over the years. There is very little research done on this type of cancer….it’s starting to get some attention lately, but there are very few treatment options for it – and the new drugs on the market are mainly for metastatic cancer that has moved beyond the neck – and even those don’t offer much more than bandaid with lots of side effects, for just a few extra months of suffering. Yes, the cancer that is supposedly a GOOD CANCER… a CURABLE CANCER. They don’t tell you that in the beginning. In fact, they don’t tell you that, even when it comes back over and over again. Papillary Thyroid Cancer is one of the easiest cancers to treat and is slow growing….in the beginning. I’ve learned so much about this GOOD cancer over the years – and I’m here to tell you that it is anything but good. Doctors and researchers are learning now that there are many different variants of each kind of cancer. For example, Of the types of thyroid cancer (papillary, follicular, medullary, anaplastic), Differentiated thyroid cancer, poorly differientiated thryoid cancer….there are many gene mutations (BRAF, RAS, TERT etc) and also many variants (tall cell variant, insular variant, diffuse sclerosing variant, etc.) What mutation you may have or what variant you may have, actually gives your doctors a lot of great information on how your cancer may react in the future and what treatment options are best for you – and some of those things may actually PREVENT recurrence or help them get ahead of the game. It’s so important, yet I’m so shocked that most surgeons don’t even bother to have the pathologist test your samples for these things! And then again, your insurance plays a part in those things too. (And I can’t go there today because I’m trying to keep my blood pressure down!)

I like to listen to Dr. Mark Urken who was the former chairman of the department of Otolaryngology at Mt. Sinai Medical Center and is currently the director of the head and neck surgery fellowship program, which is one of the most coveted advanced training programs in the world, according to his bio on profiles.mountsinai.org. He also serves as president and medical director of the THANC Foundation (Thyroid, Head and Neck Cancer) and he’s listed in the national registry of Top Cancer Doctors. He knows his stuff when it comes to thyroid, head and neck cancers. He has said many times that histology is VITAL to clinical managment of thyroid disease. Yet NOT ONE of my doctors have bothered to test to see what variant I may have had all those years ago – which might have made a difference in how it was treated back then. Now, I have to take what I can get to try and keep it at bay for a while. IF YOU ever end up with this cancer, PUSH for your doctors, surgeons, pathologists, to test your tissue or biopsy to identify any mutations or variants in your sample. It’s important because it may give them some clues as to what you should expect and how it may react if – or when, you have a recurrence. A seemingly simple thyroid cancer can eventually end up aggressive, cause distant metastases and lead to higher mortality. This is not a theory. It is a FACT.

How common is aggressive and invasive thyroid cancer? One study shows that in 2020, there were 52,890 new cases of thyroid cancer and about 2,180 of those died from their disease. No, those are not horrible odds….but ONE is one too many for me….HOWEVER, the recurrence rate is somewhere between 20% – 40% and the incidence of invasive disease is around 4% – 16%. Invasive meaning, invading critical structures in your neck, like your arties, your brain, your spine, your esophagus or trachea or something like the soft tissue. I’ve read stories of people who had a total thyroidectomy for thyroid cancer at ages 15 or 16 and never had another minutes trouble with it. But I’ve also ready stories where it has recurred multiple times and gets harder to treat each time….which is really my story. I’ve read stories where it came back 20 or even 30 years later. The sad fact is that most of your doctors don’t know enough about thyroid diseases or thyroid cancer, and that is why it is so important to find a GOOD Endocrinologist to follow you throughout your life…and you should do your research and find one who is familiar with thyroid cancer and has treated thyroid cancer…. doesn’t matter how far you have to drive or where you have to go – this is your life you’re dealing with – and a knowledgable doctor is worth A LOT. If you don’t like the one you’re seeing, find another! They will tell you, just like my first doctor told me – “If you have to have cancer, this is a GOOD cancer to have. It’s very treatable….actually almost curable. They will take your thyroid out and you’ll never have to be bothered with it again.” So, of course, I believed that. Why wouldn’t I? I’ll get off this soapbox for now – but I say these things not to scare you but to MAKE YOU AWARE that you and I are not a textbook. We are human beings and each body is different and each journey is different. We don’t all fit into this one little cancer mold, unfortunately.

The last few weeks, I have prayed and I have struggled and I have researched and talked to members of support groups I am in. 6 weeks of radiation after all these surgeries, really does a lot of damage to those vital structures in your neck.

I have made the decision to move forward with the treatment. Am I 100% confident in this decision? No. I’m not. I wish I was but I’m not. The only reason I am choosing to do it is because I want just a little more time without having to deal with this disease. I actually think the treatment for cancer is worse than the disease sometimes. Maybe this will hold it off for several years and I can finally get my life back for a while. Maybe I can make some plans and travel like I had planned months ago…. and it’s almost summer so I NEED to smell that salt air and hear the ocean and watch those amazing sunrises.

The last 8 weeks – and many, many weeks ahead have been and will be, filled with doctor appointments, physical therapy, testing and dental visits. It has been overwhelming and completely exhausting. And I’m of course, working as well, thankfully! That’s the one normal thing in my life right now! I’m tired of doctor appointments and having this cancer come first before all the other things in my life that I need and want to do. So, I just have to focus on getting through these next few months, and then maybe I can start living again without having to look at the calendar to make sure it doesn’t interfere with some medical appointment.

I don’t know that I’ll do a full 6 weeks of this radiation….all I know is that my body will tell me when I’ve had enough and I intend to listen to it. I still believe with all my heart that God put plants on this earth to heal us and nourish us, so I’ll continue to eat a mainly plant based diet, do my green smoothies and take my supplements to stay healthy during this process. I met with a nutritionist who discussed the swallowing issues with me and wanted to prepare me for being on a liquid diet/possible feeding tube due to all the scar tissue….but I’m going to do my absolute best to avoid that. No feeding tube for this chick. Not happening. My doctors are talking about stretching my esophagus before treatment begins and then afterwards, once I have healed some in order to help me be able to eat somewhat normally again down the road. Probably won’t ever be normal again, but I guess a new kind of normal for me.

This was not at all an easy decision for me and I thank all of you who have been praying for me during all of this. I ask for your prayers and all the good vibes you can send my way in the next couple of months. I’m already so tired of all this, but I have to find the energy to do this and get through it so I can come out on the other side of this ready to move on with my life!

I want those of you who are healthy to really hear me when I say – you have NO IDEA how blessed you are. You do not have to think about how may doctor appointments you have this week and remember what they are for. You do not have to think about what you are about to eat – if you can chew it and swallow it without getting choked. You get up every day and do what you want and follow though on plans you made months ago. You can lift both arms to wash your hair or put away your groceries. You wake up without pain and swelling and move throughout your day without having to remember to do your physical therapy exercises so that you can have some semblance of normal movement in your neck. You ARE BLESSED. Please remember that, because in the blink of an eye, that can change for you. I know I am blessed too because I’m still here – but I think I’m still here in a way, to remind all of you who take your life for granted, that you need to stop doing that. You are not promised tomorrow and neither am I.

For those of you who are NOT in a healthy state – maybe you don’t have cancer or some other disease but you know you’re not healthy. DO SOMETHING ABOUT IT NOW. RIGHT NOW. Not next week, next month or next year. Do it NOW – because I’m telling you, once you lose your health, it changes your entire life. God gave you one life, one body and you better take care of it. Stop putting junk into your body – eat to live, don’t live to eat. There is a plethera of information and medical studies showing that eating a healthy plant based diet along with exercise, reduces your risk of cancer and other health related issues. Stop putting all those processed foods in your body and in your children’s bodies! It’s FULL of toxic stuff that most other countries have BANNED! God put everything we need on this earth to keep us healthy and help us heal our bodies and it’s way past time we stopped giving the pharmaceutical companies millions of dollars and started spending it on the food we eat. Invest in your health before it’s too late for you! Lose those extra pounds, cut out refined sugars and spend some time outside in the sunshine. Plant a garden and grow your own food! I know I’ll probably never see a world without cancer – and you probably won’t either. For all these years, they’ve been doing all this research on treatments for cancer – and all they can come up with are toxic things that kill the bad stuff but it also kills the good stuff too! Look at your diet and what you put in your body. Pay attention! I’m thankful that chemo and radiation exist – don’t get me wrong. I know hundreds of people who are alive because of it. But don’t get to the point where you NEED it. What you put into your body is completely under your control. Nobody else can do that for you. Take it from me, what you put into your body, matters. Yes, it’s really expensive to eat healthy, whole, organic foods – but trust me when I tell you, medical bills are WAY more expensive than your total in the checkout line at the grocery store or your local farmer’s market! And missing months or years of your life because you’re busy doing treatment and going to doctor appointments – well, you can’t put a price tag on that, my friend.

Again, I thank you from the bottom of my heart for all your cards, texts, messages, calls and gifts. You have all been a huge source of stength for me and your support means the world to me. I know God has a plan for my life and I know He’s here to make a message out of this mess!

Much Love,

Char