An Unwanted Journey

Yellow defines me

My favorite color is yellow. Yellow in the soft shade of butter. My favorite flower is a sunflower. Big. Bright. Fields of them. Smiling up at the sun. I love the sun. I tend to see the cup half full. I’m basically a positive person. Always looking for the silver lining. And if you know me, you know I’ve had a lot of practice searching for that silver lining. Why then do I feel so sad?

I woke up today feeling so blue. All morning I couldn’t keep the tears from rolling down my cheeks. I think I’m mourning my old life. I miss it to be honest. I know, I’m alive. You don’t need to remind me. I know I’m one of the lucky ones. But I’m still sad. Please don’t tell me I shouldn’t feel this way. Today I am sad. It’s been over two years since this journey started. You would think that I would be fine by now. I must have been so focused on my physical well being that my emotions have been left simmering on the back burner. Today they are boiling over.

In 2018 I left the life I loved in California for a new adventure in Indiana. I did this after my husband passed away and that Orange County lifestyle was eventually too expensive. I relocated in my hometown in northeast Indiana where it was a million times cheaper, envisioning reconnecting with people and just chilling. I spent the first year there trying to get used to the area that I basically fled from after graduating from college! Within a year I got bored and lonely so I decided to go back to work. Plus I wanted cheaper insurance! Hindsight is 20/20…

I was just starting to make a few friends, which is not easy in your fifties in an area that I found was very tight knit, when covid hit and my cancer started to rear its ugly head. My support group was already quite small and just like that it got smaller. Long story short, I survived stage 4 cancer. But my social life did not. I haven’t quite figured out if people just don’t like me in general, if covid isolation changed the way people interact or if the outcome of my cancer makes them feel uncomfortable. Whatever it is I don’t really have a support group encircled around me. I did get a puppy, so there’s that.

I have joined a few groups through the cancer center but what I have noticed is most people are probably 10-20 years older than I am. I know that shouldn’t matter but it’s the first thing I notice. I found a tai chi class and I’m the youngest. I went to a painting class and I was the youngest. Most participates are retired. I am too, but I’m retired due to being disabled. Most people my age are still busy at work. Then there is me. And being a widow doesn’t help. Just call me the third wheel.

I was invited to join a group of writers recently and we met at a restaurant. I made sure I ate before because here again, I can’t eat and talk at the same time. Can you imagine my embarrassment if food got stuck? I did get a glass of wine. But wait! They were my age!!

I miss not having to worry about every dollar. I’ve said this before, but cancer was the worst financial decision I’ve ever made. I think people in general do not realize how expensive the follow up to cancer is. Obviously there is the expense of chemo, radiation and the actual surgery. But that is just the tip of the iceberg. Having the feeding tube surgically inserted. Having the port installed. Having the port removed. Doctor appointments with specialists. CT scans. Blood labs. Pet scans. The cost of a new TEP (that’s the prosthesis) every three months. The travel to all of this. Daily medicine. And now I have the daily supplies just to breath comfortably. For the rest of my life! Oh yeah and the dental issues I’m dealing with due to where my radiation was. Thank goodness for payment plans.

I was able to finally get on medicare so my monthly insurance cost was cut in half. Plus my supply costs went from over $300 a month down to $28 per quarter. But two and a half years of the previous costs literally have wiped me out. It was basically $700 a month for the bare minimum! I have cut down on basically everything. No more Starbucks for me! No new clothes. I never eat out. Maybe it’s a good thing I have no social life!

I’m also so over worrying every time I have a doctor appointment. The last two appointments I had anxiety so bad my blood pressure was through the roof. Then I worry about that. When I had my tumor my blood pressure was high because I couldn’t breath. So now I’m like, is it back? It’s not. But I will always have that concern.

And please do not tell me to praise your god for “curing” me. Who decided I should have this in the first place? Oh wow. I’m sad and bitter! I better find some sunflowers. STAT.

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Scanxiety

Recently I had my yearly followup appointment with my ENT surgeon. On paper it’s really not a big deal. Pop in, say hi, get a scope and go home. Easy as pie, right? In real life, this time for some unknown reason, my anxiety hit the roof. There was absolutely no reason to feel anxious. It’s been over 2 years since my surgery and 2 years since I finished chemo and radiation. There hasn’t been any abnormal signs since then. There was a spot in my lung that they were watching in the first year but it never changed and the doctors said it was more than likely a scar from bronchitis years ago. They thought maybe something was on my liver but that turned out to be nothing. My scopes have all been ok, but for some reason I was ANXIOUS. How did this anxiety make me feel? I think it was close to a panic attack that I could keep under control. My breathing was affected, my calmness was not there. My heart was beating fast. I felt it everywhere.

My appointment was of course that two hour drive to Indy. This time I left a little early because I decided to shop at a store that isn’t in my current city. Shopping helps everything, right? It did while I was browsing, but as soon as I got in my car again, boom, anxiety! I headed over to my appointment, checked in and waited. Of course, as soon as I sat down I had a coughing attack. I’ve come to realize that maybe, just maybe, that’s how my body reacts now to things I might be allergic to. You should have seen the look I got in the waiting area. Sorry… Not really. Such is life. Deal with it, dude.

Oh, funny story. When I was checking in the lady was like “you’re from California?” I’m like “yeeesss? How did you know?” She recognized my area code and even knew it was south Orange County! We had a bonding moment. Side note, I miss California.

Anyway, back to my appointment. I warned the nurse how anxious I was and you should have seen my blood pressure! Normally on any given day, my blood pressure is 120/80 or lower. Today it was 140/80. And I hadn’t even had any coffee! She literally didn’t even bat an eye. It must be common in the cancer center. A high stress environment to be honest.

Dr. S arrived. He greeted me with his normal hug which gets me every time. How many doctors do that? He couldn’t believe how great I was doing. Couldn’t believe I hadn’t needed another esophageal dilation. Then I had to have the dreaded nose endoscopy. What is it that you ask? It is when the ENT inserts a thin flexible tube with a light and tiny camera through your nose. It supposedly doesn’t hurt. It does. What does it feel like? Honestly it’s really hard to describe. It has a burning sensation because this is not normal for a nose. Then I can feel the tube bump around and turn as he is trying to get all the views. I’m the patient clenching the arms of the chair, with my eyes tightly closed trying to breath normally. Dr. S is apologizing the entire time! At a certain point I can feel the tube in my throat. So weird.

When he was finished he proceeded to tell me that I DID NOT need to have any more follow-ups with him! Wait, what? He said it was not necessary for visits anymore! The new protocol was follow ups are stopped at two years. If I had any issues just call. The issues he was talking about were bleeding, swelling etc. Wow! Just Wow! I can’t believe how far I have come from my first visit with him. He calls me a walking miracle. I mean I did have stage 4 cancer, a two inch tumor in my airway. I’m one of his success stories! As he was walking me out from our last appointment EVER I made a comment on why did I get this cancer. And literally at the same time with a question in our voices we both said “processed food?” Makes you think, doesn’t it? Long story short, my anxiety for this appointment was not necessary.

Now I have another appointment on Friday. This time it’s for CT scans. In preparation for them I had my blood labs done yesterday. I always hate this part. The reason is I have very tiny veins. Half the time they use the kid needle. If the person drawing the blood isn’t exceptional at their job, my poor arm is not happy. Yesterday I came away with a bruise as she kept moving the needle around, trying to find the right spot. Good god, stop please. Side note. One blood test was not going to be covered by my insurance so I declined it. I mean I don’t have an extra $250 just laying around. I had to sign a form saying I declined the test. No big deal. Later that evening I got the result from that test. They did it anyway. Me for the win.

So wish me no scanxiety on Friday.

Unicorn > Monster

I’ve gone through a lot of stages on how I feel about myself. I know you are probably thinking “oh, Andrea, you are just being silly. You are just the same as before.” I tend to disagree with you. That’s how I feel. Stop telling me to feel different. Currently I am a unicorn. Rare. Unusual. Different.

I was able to meet other laryngectomees at an event put on by Atos in Indianapolis last week! Atos is the company that makes all the supplies I need on a daily basis. I’ve never met another person with my disability before and it’s been over two years! Have you? We are extremely rare in the real world. What is even more rare is being female and relatively young. I still consider myself young even though I’m 60 now! The typical person with laryngeal cancer is an older man. And that was reflected at the event. I sat beside a man who was 90. There were only three women counting me. The teaching videos featured just men. Ahhh, unicorn. That’s me. Rare and maybe magical. Juries still out on that, but me being able to talk without a voicebox is pretty magical. Just saying.

Let me talk about the event! Meeting people that actually understand me was the most amazing thing ~ever~! Like they understood the ordeal of just being able to swallow normal, talk normal and breath normal. You real world people just don’t get it and honestly I hope you never do! They understood the annoyance of having the TEP (that’s the prosthesis) leak, having the baseplates not stick to your skin, not being able to eat and talk at the same time. They understood how I feel when I go hiking or just a simple dog walk and knowing I can’t scream if I need to. They understood the dilemma of eating with others and not being able to have a conversation. I was impressed by how no one was wearing a scarf to camouflage their neck. I’ve made the realization that I must be a little vain. Must be the Orange County in me! I don’t want people looking at my neck and making judgements about me. You know what I’m talking about. You’ve all seen the “quit smoking” commercials. News alert. I never smoked. So stop assuming everyone in this situation did. I met other people that didn’t smoke either. It seems everyones first symptom was a hoarse voice. If you are a medical person, pay attention! And get this. I met someone who literally lives 2 miles away. Wait what?!!

I did laugh a little in my head when I saw the lunch that was provided. Ummm, I can’t really swallow lettuce. The pasta was too gummy and a recipe for having swallowing issues. Eventually there was soup. I did snag a brownie. Luckily I had thought ahead and had snacks in the car for the drive home.

The second best thing about the event was being able to try a hands free talking device. I don’t know the specific name for it, but it’s a small plastic thing that a special hme fits into. You talk normally and your breath closes it up making it possible to talk without using your hands. OMG! It works! I can only define it as freedom! And they gave it to me!! Now I just have to figure out how to keep the baseplates attached to my skin. My Atos rep sent me a sample box of a new sturdier baseplate so I will experiment. I wanted to use it at a family event this weekend but for some unknown reason my skin is having issues again. So I haven’t been able to practice. Damn radiation…

So I’ve come a long way from what I used to call myself. A monster. And then actually like the little mermaid! Oh and these lyrics are how I used to feel and to be honest I still feel on any given day. “Sometimes I feel like everyone is a sexy baby and I’m a monster on a hill. Too big to hang out, slowly lurching towards your favorite city. Pierced through the heart but never killed. – Taylor Swift”

Finally seeing myself as a unicorn is a big step because a unicorn is greater than a monster.

Random Thoughts

As I brainstorm on what would be an interesting blog I come up with numerous ideas but a lot of them aren’t long enough for an entire post. So today I thought I would let you experience everyday life living with my laryngectomy. At this point, my days are pretty routine. I’m over two years out from the surgery and almost two years out from the end of radiation and chemo. Go me!!

One thing that I deal with continuously is the amount of mucus my lungs seem to produce and also the dryness that can randomly attack me. Either way it produces coughing fits. I’ve gotten pretty talented at quickly removing the HME when I feel a cough coming. Or a sneeze. No big deal, right? Actually it is. If I don’t remove the HME fast enough it can become clogged up with mucus. That makes it difficult to breath. I guess I could compare it to a really bad stuffed up nose. Also I don’t want to waste the HMEs. They are definitely not free! And weather really affects me. I haven’t figured out what is ideal yet. Humid. Dry. Hot. Cold. I don’t know! I’ll let you know when I do!

Every morning and every evening I’m constantly aware of my new carbon footprint. Everything I use comes individually wrapped in plastic. This includes the baseplates, HMEs, extra cotton swabs and wipes. The baseplates have sticker backings. The HMEs are made of plastic and foam. The adhesive remover and the skin barrier are small wipes wrapped in individual packets. Everything is sent to me in small boxes. Each box has an instruction booklet that I just throw out. And everyday I use a multitude of these products. I now make so much trash. It actually saddens me. I’m bad for the environment. As Taylor would say “It’s me, hi. I’m the problem, it’s me.”

My skin is also just a mess. I’m fair complected and I think that causes issues. I could be totally incorrect, but I’m going with it. I’ve already stopped using a skin tac. I just wanted to itch myself to death. I cannot image what eczema feels like. It has to be the worst. I basically was using cortisone around my stoma everyday. I experimented by not using the tac and the itchiness went away about 85 percent of the time. It’s weird because it’s not just around the stoma where I put the sticky baseplates. It’s a much larger area. I follow facebook groups and some people use baby wipes to clean the area. So I’m experimenting. I can’t say at this point if it works or not. And again with the carbon footprint. Another trick I’ve learned is to use a rough washcloth to itch with! Fingers can rip the skin and a washcloth doesn’t. Tricks of the trade.

There is always insurance issues. I’m not even going to say anymore on this. Just there is always insurance issues. Wait, I will say one thing so you understand what I deal with. The company that I get my supplies from sent me an invoice with all my orders from March through now and said hey, pay it all now. I mean really? What kind of company doesn’t send out monthly invoices? I’m now on a payment plan. I was able to switch to Medicare this month so I’m hoping the transition is smooth and the supplies are cheaper. We shall see. I just put in an order. Did you know that if you are considered disabled for two years you qualify for medicare no matter your age? Yeah, I’m not 65.

Having cancer was the worst financial decision I’ve ever made. End of story.

My TEP, which is the prothesis that is inserted between my airway and esophagus allowing me to talk, is a continuous leaking battle. I can say most days there is always a small amount of leakage. So absolutely annoying. Not enough to call my SLP for a new one, but just enough for my body to react. Again with the huge cough and mucus. This is usually combined with whatever liquid (and sometimes food) I’m drinking. I don’t like to drink anything in the car because what if that’s the time it decides to leak? Ugh.

Part of my recovery process has included joining facebook groups with other individuals just like me. Lately it seems like there are quite a few people who are not surviving or the cancer has returned. That makes me feel sad and a little scared. These are people who had their surgeries and treatment the same time as me. I’m not considered cancer free for 3 more years. A lot can happen in three years. I am going to go to a workshop type event in December to connect with larys in Indiana. I’m actually curious in how I compare. I mean I had stage 4 cancer and now I hike and golf. I’m getting ready to start traveling again too! I’m working with my SLP to get all my ducks in a row.

I have also realized that adults do most of their socializing over food and drinks. I feel so awkward. And this is with family! Every time I take a bite or sip someone will ask me a question. Whelp. It’s physically impossible for me to talk while I eat. And I’m not exaggerating. Or the conversation is moving along and I want to join in but I can’t because food. So I just basically sit there. Smile and wave like the penguins in Madagascar. I’m like the odd one out. I really enjoyed the summer and playing golf with my sisters. No food involved!

So in retrospect, my life is getting back to normal. Or as normal as it can be. I’ve learned to just do what feels right for me in this phase of my journey. Also, side note. Don’t ever tell a cancer survivor “well, at least you are alive.” We don’t need to hear that.

Milestones

As cliche’ as it sounds “what a difference a day makes.” In three days it will be two years since I had my laryngectomy. And I turned 60 a few weeks ago ridding myself of the horrible decade I live through. I’m probably the only human that was counting down the days until 60 arrived! Why, you ask? Well, it’s been a lot. Sigh…

***Right before the 8 hour surgery that changed my life***

My 50s started off like anyone’s would. Watching my daughter graduate from college. Seeing my son start high school. Just typical things. Until my husband had an aneurysm. Then it just went downhill from there. He was in some sort of hospital for the next nine months. He had multiple brain surgeries, brain bleeds and strokes. He never gained anything near normal and passed away at the age of 54.

***Last family photo*** ***and vacation***

Two years later I moved away from California to Indiana where it was amazingly cheap to live. (actually my moving anniversary is this coming weekend!) I really didn’t want to but I had family there and without my husband’s income the California dream wasn’t possible any longer. But, I was able to build the perfect little house with my dream backyard so there was some tradeoff! I don’t have the beach close by but I do live on a pond. Does that subtract the snow? Hmmm…

Then my voice became concerning. I was continually hoarse. I didn’t really think too much about it. I assumed it was allergies. That was my first mistake! My doctor assumed it was allergies also and sent me to an allergist. Another mistake. Long story short, it turned out I had stage 4a cancer in my voice box. I was lucky that it hadn’t spread except for a lymph node. But the treatment was life changing. And to make matters worse this entire cancer battle was during the covid pandemic. Most of my treatment I was on my own. Not only did I endure that surgery, but following it I had chemo and radiation. So not only did I have to use all my energy for recovery, I had the extra concern of making sure I didn’t contract covid. That combination could be deadly for me. F$*k my life.

When I had my laryngectomy I was 58. See I told you my 50’s sucked! Thank goodness I actually survived that decade. I basically endured way too much for any one person. One of my friends said on my birthday, they were talking about everything that I had gone through and they couldn’t believe it. I reflected on that and now understand why I’m exhausted. Just exhausted.

The good news is as of today, I’m still cancer free. My medical team is super careful when they read my scans. They have been keeping an eye on a spot in my lungs but it hasn’t changed for over a year so they aren’t worried. If my cancer spreads it usually finds a new home in the lungs. And just recently something was seen that they didn’t like on my liver so I had a pet scan. Have you every had a pet scat? Let me just say they are loud! I actually was given ear plugs to wear during it. Anyways they determined the spot on my liver was no big deal so I entered the decade of my 60s all clean.

So on my birthday I saged my house to get the bad mojo out of there! I made the sage with sage, lavender and roses from my Indiana garden! And just yesterday I went and played golf! I was worried about my limited range of motion in my shoulders and you know what? I didn’t need to be! It’s going to be a good decade.

C’est la vie

What a day. I just got back from a quick trip to Indianapolis. That is sarcasm. It’s a four hour round trip drive and the second time in four days that I have made this “quick” trip. Why you ask? I couldn’t talk!! My voice prosthesis wasn’t working. When I tried to talk all I got was silence and extremely light headed. Houston, we have a problem. Luckily my SLP lets me text her. So last Thursday we tried to be mini detectives and figure out what was happening. Nothing added up, so trip number one happened. (Side note. I saw a huge field of SUNFLOWERS on the drive! Stunning! I’m going to go back and find an exit that takes me to them.)

She took one look into my stoma and said “Oh, that’s not good. You have skin growing over the prosthesis!” Wait, what? Is this a thing? I guess so. The solution was removing the prosthesis and just replacing it. Easy, peasy. This time she put in a different model, but honestly I just want one that works. She sent me on my merry way and each time we say “I don’t want to see you for months!” And this time there was only one drop of blood! Look at me go.

The next morning as I was drinking my coffee this new prosthesis starting leaking. You really don’t understand how frustrating this is. It’s like every time I take a sip it’s similar to having it go down the wrong pipe in your normal life. Every sip. My body quickly reacts by coughing violently. It does not want liquid going into my lungs. This is actually what is happening. (In the back of my mind I worry about aspiration pneumonia.) So the liquid is being coughed out of my stoma combined with mucus and it’s just a big mess. Then food actually started to leak through! And that actually hurts! Scrambled eggs, tortillas, zucchini…

And of course this was Saturday. I had to wait until Monday when her office was open. Sigh. Needless to say I didn’t really eat or drink a lot over the weekend. I was hungry and annoyed by the time Monday rolled around. I texted her and told her we had a problem. Always before when it’s leaked it’s been through the center. This time it was around the edges. I watched it leak and it was crazy! I took a sip of coffee and it just poured through! She said the skin tissue that had been growing over it was probably not as swollen anymore and the new prosthesis wasn’t fitting properly. Just my luck. Trip number two began.

On this trip I actually pinpointed the actual location of the sunflower field! It’s only about 30 minutes from my house!!

I arrived in Indy and let’s just say this time it was more than one drop of blood. OMG. She took the prosthesis out. So far so good. Put the new one in. I took a sip of water. All good. Took another sip and my SLPs face told me no, not good. This one was leaking too! So it was yanked out. I use the word yank because that’s the physical feeling I get. It’s not a delicate procedure. She decided on a different model and a different method. The new prosthesis had edges on both ends that if one side leaks the other side won’t. Ok, sounded good to me. And she said this approach was a gentler way to insert it. Again, sounded good. OMG. In this procedure she used a substance that I’m assuming used my body heat to melt or soften it. In my stoma! I couldn’t breathe. Like really. I couldn’t breathe! I’m not a drama queen but seriously. I COULD NOT BREATHE. Dying by suffocation would be horrible. Just saying. Finally this part was over and she inserted the new one. And can I say at this point there was a lot of blood. She said “No on this procedure! We will just do the fast one next time.” Uh, thanks? Oh, and this one leaked too.

She was getting confused at this point. Then she relooked at my files and the size of the prosthesis was incorrect! She removed the second prosthesis and inserted a third one. This time the original model. At this point I just started laughing. I mean really. What else could I do? C’est la vie.

It’s never over

For everyone who thinks cancer is over once chemo and radiation is done, this blog is for you. So I just got off the phone with my insurance company. The call was over an hour long. I only had a simple question. Is anything easy? Let me back up.

This insurance company issue started in January of this year. They don’t have issues with my doctors, appointments, scans etc. They don’t have an issue with the money I give them every month. They do have an issue with the company that I have been getting my supplies from. These are supplies that I use everyday. You know, the HMEs and the baseplates that I use to basically protect my lungs and to talk. My medical team has deemed them medically necessary. The scenario is if I don’t wear them I could potentially develop a mucus plug in my airway. Let that sink in. Mucus plugging up my airway. Hmmm. That’s what the tumor was trying to do. I’m not an expert but I think no oxygen in the airway could pose a problem. Just saying.

There are two companies that manufacture the hmes and the supplies that go with them. Both companies are considered out of network by most insurance companies. I follow several facebook groups focusing on head and neck cancer and I’m not the only person that has this issue. Earlier this year I worked with a case manager at the insurance company to get the provider I use approved as the supplier of my daily equipment. It took about two months for approval but at least I wouldn’t have to deal with that for another year. What I learned is both companies were battling over the percentage they would pay. I’m probably the only laryngectomee the insurance company has, to be honest! There are only about 50,000 of us in the entire nation. I don’t think my monthly supplies will affect their bottom line too much. Maybe they just need to cut back on the junk they mail out, lol.

Anyway, after two months, a case manager, my surgeon, my SLP and myself, the original supplier was finally approved. Then a few months later I received a letter with this heading across the top: NOTICE OF INITIAL ADVERSE BENEFIT DETERMINATION. Yes, in all caps. And underlined. And in boldface. I was like, what now? It was a letter basically telling me, remember when we approved the durable medical equipment from the non-network provider? We were just kidding…

I’m like whatever. They did provide me with a phone number of the one in-network provider. So I called. I want you to remember talking on the phone is hard for me. My voice is extremely quiet and it makes it hard for the other person to hear me. Most people are convinces I have a really bad sore throat. I just go with it. And don’t get me started with automated phone systems. They cannot hear me AT ALL. Wait, I called the number and got a message that didn’t even acknowledge the company, just a random person. I left a message. Yesterday. And today. Crickets. I’m so confused and so very over it.

At this point, I decided to call my case manager at my insurance company to have her call the supplier. Oh. My. God. What a nightmare that was. First, the phone number I had wouldn’t go through as dialed. I ended up calling the main line which took me directly to the automated system with no operator bypass. I finally got to a human and then it took over an hour for them to finally realize my case manager didn’t work there any longer. Over an hour, guys.

***This is the supply that’s approved***

So I have a new case manager who is currently looking into my case. I gave her the phone number of the in-network provider to call. Let’s see what happens.

It turns out the in-network provider that is on the letter that was sent to me by the insurance company actually doesn’t exist. Yes, that’s right. The provider I’m supposed to use to get my medically necessary supplies isn’t real. If you could have seen my face when I was told this you would laugh! But I also learned from trial and error that the denial letter just meant for one supply. Not everything! Why couldn’t they just say that? Even my case manager thought it was for EVERYTHING! I learned this because the out-of-network provider just put an order through. Regular supplies still approved. Anything extra, nope. It’s never over.

Chef’s kiss

Ah food, glorious food. Can you imagine not being able to eat, taste or smell food? This was a thing for me! I know, right? There was a point in this journey when I wasn’t allowed to eat, when food had no flavor and even now I can’t smell it. We are talking no pizza, no burgers, no salad, no ice cream.

Back before I even knew I had cancer, I began having problems with swallowing. I really didn’t have a clue what was going on. I just knew there was a lot of choking and coughing in my attempts to eat my everyday food. It was really weird. And my primary care doctor didn’t address this. It was all about the allergies. And why would I even venture into the cancer lane? It’s funny that if you do a quick research on laryngeal cancer the top two symptoms are a hoarse voice and trouble swallowing. I just shake my head. Those were my top two symptoms…

But back to food. After my big surgery I came out of it with a n-tube in my nose.This would be my method of getting nutrition for about two weeks as my throat healed. Just liquid protein drinks into my nose tube. Wonderful. At the end of the second week I had an appointment with my surgeon where the tube was to be removed. The plan was I would then begin eating liquid type food. You know, protein shakes, smoothies, soups. I was actually really excited. Having nothing in your parched mouth is not fun. I kinda snuck ice chips though. Shhhh. The morning of my appointment we had a problem. My son said something smelled bad about me. Remember, I couldn’t smell. Off to my appointment we went. I guess everyone could smell something but me! It turned out I had a fistula in my new throat causing an infection. Ah, infection equals smell. It also equaled no food yet for me. The procedure for fixing the fistula was packing gauze in it twice a day. The gauze was basically soaking up the infection allowing the hole to heal. On day one of the packing I use about 3 feet of gauze into this tiny slit in my neck. Crazy, right? But back to food. I wasn’t allowed to eat or drink anything by mouth until it healed. And my surgeon said it could take up to 6 weeks. I was in tears as I was scheduled for a g-tube to be inserted. This was a tube surgically inserted into my stomach in order to get my needed nutrition. Dr. S said, hey, it’s better then having it in your nose! I had to agree. And a g-tube is routine for head and neck radiation patients. There was a huge possibility that the radiation could ruin my ability to swallow. Sigh.

Luckily my fistula healed rapidly and I was given the ok to begin eating by mouth. I was absolutely ecstatic! I was meeting with a nutritionist during this time period and she gave me recipes for smoothies. And we are talking high calorie smoothies! Whole milk, ice cream, nut butters, the whole gambit! Can you even imagine? I was down. I was a little over 100 pounds and her reasoning was eat anything I can! I needed to gain weight, stat. I honestly can still remember the first sip. Absolute heaven.

I progressed from smoothies to soups, eggs, mashed potatoes with tons of gravy. Anything that would just slide down my throat. One of my favorites was black bean soup. Then I started having problems with the bean skins. Swallowing was reversing. This was what can happen when you combine a total laryngectomy with radiation focused on the throat. Tons of scar tissue was forming. Great. Now what? I was scheduled for an esophagus dilation. That’s just like it sounds. My throat was going to get stretched. Did you even know this was a thing? I did not.

It turns out there was just scar tissue in one spot so the dilation was simple. In a month I would have another dilation and hopefully that would be it. So far I haven’t had to have another one. But I have learned a lot about what I can and cannot eat. I have to eat everything in tiny bites. I mean toddler sized bites. Everything has to be chewed 100 percent. If not, it can easily get stuck in my throat. There is no need to panic though as my airway is completely separate. Certain foods have a tendency to get stuck easier than others. I cannot eat corn, but green beans are amazing. I can eat iceberg lettuce but not red lettuce. Large tomatoes are easier than cherry ones. Too much skin on the little ones! Fruit is easy! I’m still experimenting with meat. Radiation affected the amount of saliva my body makes and saliva is needed to break down food in our mouths, especially meat. Weirdly enough I can eat bacon and hot dogs. I tried to eat stew meat and that was a big no. Chicken is hit or miss. But I’m honestly ok without it.

And can we talk about flavors? Radiation can really change the taste buds. Things that I wouldn’t really eat before are amazing now and vice versa. I’m obsessed with bell peppers, sauteed cabbage, blueberries and strawberries. Bananas are just ok now. Wheat thins are blah. Sweets are delicious. Wine is ok. It kind of burns. Coffee is average unless it’s “good” coffee. Spicy food is hard. It really burns my tongue. But I’m slowly able to put red pepper flakes on things. Celery and ginger in my fresh juice is so good. And my number one take away? My homemade food, treats and juices taste way better than anything at a restaurant or a grocery shelf! I’m currently eating freshly made rice pudding and omg! I mean who thinks rice pudding is to die for?! Anyways, chef’s kiss…

Mechanics

So how does a person without a voice box actually talk? Great question to be honest. There are so many things that a year ago would never cross my mind to ask, let alone live with. And this is one of those things. As you all know, if you have been following this trippy path I’m on, I had my entire throat removed along with my vocal cords. This was the necessary treatment to rid my body of the stage 4 cancer tumor that decided to grow there. And no, I’m not a smoker! Then my throat was rebuilt with a skin graft from my left forearm. I am literally shaking my head as I type this. I mean, that’s crazy, right?! But even though my throat was rebuilt, the vocal cords were permanently gone. In comes science.

Before my laryngectomy happened, my surgeon gave me several options to consider when it came to my voice. Who am I kidding? There are only three choices. That’s it. Artificial larnyx speech, esophageal speech or tracheoesophageal speech. Wait. What? Research commenced and it really didn’t take much to make my decision. The artificial larnyx speech is the one that sounds like a robot, to be blunt. That might be ok for some people, but it was a hard pass for me. Just no. Esophageal speech is a technique that uses the body’s natural tissues to create sound. It is the oldest method to form speech and can be difficult to learn. It was kind of explained to me as taking in air similar to burping. I cannot burp on command so this didn’t seem very feasible. It sounded like something a middle school boy would think was cool. I’m not a middle school boy. So I settled for tracheoesophagel speech. Now I’m going to get all technical on you.

***I wear scarves to camouflage*** **the HME**

Tracheoesophagel speech uses a TEP implant and is the most common voicing method used by a laryngectomee. That’s my label now. A laryngectomee. I use to be just an Orange County soccer and baseball mom. I prefer that label! A TEP is a tracheoesophageal prosthesis that is placed in the wall that separates the trachea and esophagus in order to enable a total laryngectomy patient to make voice. Can you believe that is a thing?! Google it for images. I mean we’ve all seen the athletes that compete with the limb prosthesis but one inside my airway? That is crazy. The TEP was inserted during my “big surgery.” Then I had to wait for all the healing to begin before I could experiment with my new way of communicating.

Due to radiation treatment it took way longer than normal to beginning voicing. Radiation, which is the actual WORST THING EVER, burnt my skin around the stoma so bad I wasn’t able to use the adhesive baseplates to attach the HME filter to my skin. (I actually had blisters from the radiation.) I know you haven’t a clue what on earth I’m talking about. Trust me, I didn’t have a clue either! Every time I had an appointment with my oncologist he was like why aren’t you talking? I’m like, dude, look at my skin!! To this day I don’t really think he had ever had a patient like me or understood what was necessary for me to speak. It was extremely frustrating to be honest. I have a new oncologist now and I’m ok with that. My speech pathologist suggested a lary button for a transitional method. This button was a small rubbery tube about an inch long which fit tightly into the stoma. That is the key to talking. “Tightly.” It was soooo hard to insert into the stoma. I had to fold it in half and insert it quickly so it could pop open inside the hole. There was a lot of coughing involved. Taking it out was a mini nightmare. There was always blood, as it was breaking down my skin. But once it was in I was able to talk. (side note: I can also talk if I cover up my stoma with my thumb! I do that in the morning with the pup.)

Finally after a few months my skin healed and I was able to start using adhesive baseplates. These are basically huge stickers that the HME snaps into. HME stands for heat moisture exchange. Basically it keeps the air I now breath through the stoma humid, similar to what your nose does. I’ve learned quite a few hacks over the year that have made attaching these stickers easier. It’s not like you just slap it on and go your merry way. First the skin needs to be very clean. I then use an adhesive wipe to make the area very tacky. Next I heat up the baseplate between my hands to activate the stickiness. After that I carefully stick it on the stoma area making sure it’s kind of centered properly, (it literally never is) and hoping there are no wrinkles! Wrinkles would mean the seal isn’t tight. If any air gets under the sticker then no voice! I use a wooden spoon to smooth everything out and help to get it really adhered to my skin. Next, I snap the HME into it and then no talking for at least 5 minutes. This seems to work for me.

I’ve also learned that if my airway is extra mucusy, (yes, that’s a thing) the mucus will block up the prosthesis and I’m not able to talk. I have a special brush that I use to clean it out. I guess you could compare it to blowing your nose. Can you believe I literally never have to blow my nose again? I wonder what happens if I get a cold? I haven’t had one for almost two years!

I use a new adhesive base plate and HME every morning. At night I use the lary tube to give my skin a break and also to make sure the stoma stays the same size. I guess on some people it can shrink. That would not be good! I’m hoping eventually I can stop with the lary tube. Honestly, it’s very uncomfortable. When I insert it into the stoma there is a whole lot of gagging. It’s my least favorite part of the day!

***Press in the hme and I can now talk!***

I also have to have quarterly maintenance on the prosthesis. After a few months it can start leaking. And when I say leak I mean all of the sudden the fluid I’m drinking can drip through it, into my airway. I would say it’s similar to having something go down the round pipe in my previous life. Again, a lot of coughing! I’ve learned some hacks for this too. I drink in sips not gulps. I clean the prosthesis with my brush dipped in apple cider vinegar. And believe it or not, eating bread helps! It must kinda glue everything together. I don’t really know. From what I understand, food particles on the esophagus side can get stuck on it causing it to allow fluids to leak through. When this happens I get my trusty blue brush and clean out the prosthesis really well. It’s funny when I see a wee bit of broccoli in my mucus. I’ve also had my mucus turn purple if I drink red wine and orange it I’m eating a sweet potato!

Every day for the rest of my life this is my routine. I recently had an issue with my insurance company and the medical supply company disagreeing to terms on my supplies. Here I am just wanting to breathe comfortably and speak and they were disagreeing on percentages. Capitalism at its best. Luckily I stockpiled my supplies and didn’t run out, but even so I was stressed. Hey, medical industry, get your act together. People don’t choose to be disabled. Help them out!!!

Fingers Crossed

December marked one year since all my treatments were complete. I had appointments with my radiology oncologist, my new oncologist and my surgeon. On top of that I was scheduled for a ct scan of my head and neck and another scan of my lungs. I was happy that I had made it to the one year marker but a little nervous for all the appointments.

Dr. V was first up. He is my radiology oncologist. All through treatment he was precisely what you imagine a doctor who specialized in radiology to be. Polite, smart but not too warm and fuzzy. During my radiation treatments I wasn’t able to talk yet. The skin around my stoma was a nightmare! Radiation burnt and blistered my neck and there was absolutely no way an adhesive would stick to it. I use an adhesive around my stoma in which the hme is inserted. When I want to talk I press the hme. This action with the combination of a tight adhesive seal allows the prosthesis to work and voila, I can talk! So, anyway, I never had I chance just to chat. I do like a good chat! Well, finally during this appointment we talked!

First, he wanted to do a scope of my throat. “Ugh” is the feeling I have when that word is uttered. If you’ve never had one, consider yourself lucky. It’s basically a scope that is inserted through your nose and pushed in until the doctor can see whatever they need to see. I’ll be honest. It is extremely uncomfortable. Ok, it hurts. I finally agreed to it as long as he used the numbing spray. Funny story. I can’t sniff and I think he forgot. So the spray went into my eyes. He was like oops, I hope your eyes don’t get numb. Long story short. I survived. And he didn’t see anything to cause alarm.

Then we had our first real conversation. I asked him why he went into radiology oncology. He said he liked physics, but he wanted to be around people too. He laughed when I said I hated radiology. His wife was Korean so he understood spicy food when I said I missed it. He assumed I was a smoker because people that have my kind of cancer normally are. When I told him “nope, never” he was actually extremely surprised. He told me I was rare. He said if my cancer comes back it’s usually within the first two years. One year down, one to go.

Next up was the ct scans. Out of everything this month, these made me the most nervous. I mean it’s pretty routine now. Lay on the machine, breath, hold my breath. Don’t swallow. Repeat. And repeat again. Now do it with my arms above my head. They do one of my lungs, because if this cancer comes back it normally appears in the lungs. Then I go home and wait for my results to pop up on my phone. Seeing the words “no evidence of recurrence” and the feelings that I feel cannot be expressed in written form.

Now down to Indy to see Dr. S. He’s my surgeon who if I haven’t mentioned is wonderful. How many of you can say that the first thing your doctor does when he sees you is give you an huge hug? That’s how my appointment started! He looked down my throat instead of the scope and liked what he saw. Or maybe I should say what he didn’t see! The thing that stood out the most for me on this visit was him saying “Wow! You really beat the odds!” I reflect now realizing whoa, I had stage 4 cancer. Stage 4 is the most severe cancer but I never once thought I wouldn’t beat the odds. I just assumed I would. Power of positive thinking? See you in a year Dr. S!

My final appointment for the year was with my new oncologist. My old one moved to New York. He was ok but I was looking forward to a new doctor. I wanted someone who had more energy and was not so “old-school”. Dr. M fit that bill. He didn’t come in with hand written notes. Instead he used the computer. Enough said! He was younger than me and immediately started asking questions. My cancer and my treatment is not something you see everyday. I felt like he was interested and intrigued. I questioned one thing on my ct scan and he said I shouldn’t be concerned but he ordered blood labs just to be on the safe side. No messing around with him! I’m glad, number one, that I questioned something and number two that I got labs. It seems that my thyroid, which was affected during all of my treatment, isn’t doing its job. So I’m jumpstarting it with some meds. Always, I repeat, always speak up.

So my appointments are done for the year. Nothing frightening popped up. And now I just wait out year two with my fingers crossed.