Learning to Care: How We Made It Through Cancer

So... I said I was going to do this on Thursday, but I was asleep most of the day and then had an appointment.  Sorry!  I'm going to make this a Friday event thing on the blog now.  If you have a story to share just email me.

This story is from Cameron about his wife's and his story on their struggle with life and cancer.  I think it's a story that needs to be shared.

On November 21st, 2005, my wife and I started a journey that would prove to be one of the most difficult challenges we’d ever face. This is the day that my wife was diagnosed with cancer, malignant pleural mesothelioma. It was also the moment in my life when I was no longer just a husband. I became a caregiver for someone who had cancer. I wasn't necessarily prepared for this kind of a job, but I did everything that I could to be there for my wife. It came at a strange time in our lives. We were just starting to figure out how to parent a newborn, our first and only. Our daughter Lily was born just three months before my wife's diagnosis.

I started my job as a caregiver the moment that my wife found out she had cancer. I was with her in the doctor's office, and the look on her face sent me into a panic. I didn't know what we were going to do as the doctor talked about treatment options. There were three different places that we could go, one of which was a specialist named Dr. David Sugarbaker in Boston. My wife was too shocked and paralyzed by fear to consider any of these options, and I knew that I had to make a decision for my family. I turned to the doctor and said, “Get us to Boston!”  Soon after, my wife would begin treatment there, and there would be a lot of questions about how we were going to survive as a family.

The next few months were chaotic for my family. I was still working or at least, trying to work. I had so much stress from the bills, taking care of Lily while also taking care of my wife that I wasn't really sure how I got through those first few months. I wasn't at my best all the time, and despite my best efforts to stay positive I often imagined the worst case scenario, my wife passing away and leaving me a broke, widowed single father with a daughter who would never really know her mother. These were the darkest of days, and more than once I broke down crying under the pressure.  However, despite having these weak moments I never let Heather see my fears.  I knew she needed me to be strong for her.

My wife's family is extremely caring. They came through for us at a time when we needed them most. Not only did they provide financial support for us during a really hard time but they helped take care of Lily, and offered kind words of encouragement to help us get through the rough times.

If you are a caregiver in a similar situation, take these lessons from someone who has been there before.  Don’t’ be afraid or ashamed to ask for help.  Allow yourself to have bad days, these are inevitable and even necessary at times.  Use every resource available to you, and above all else never, ever give up hope for a better tomorrow.

After months of grueling mesothelioma treatment, Heather came out the other side cancer-free, and has remained so for nearly seven years.  We hope that by sharing our experiences, we can help inspire all those currently in their own cancer battles today. 

Cameron has a blog of his own that if any of you care to read more about what his and his family have been dealing with and continue to deal with, here's the link: http://www.mesothelioma.com/blog/authors/cameron/

Awareness and Research

Currently I've been dealing with a lot: catching up in school, more health issues, waiting to go back to work, Thanksgiving, Christmas, and medication reactions.  It's hasn't been fun for the most part, but the fiance does make it nice at times.  This matters a lot to me and probably other cancer patients, to have someone there by their side through all of this.  Some people are lucky and have family, friends and/or an SO near them to help them out, but if you have a friend that has cancer (or any diseases for that matter) that seems to be dealing with it on their own, be there for them in any way, you can even at least be a shoulder to cry on.  It will help them a lot.

Anyways, I've been dealing with feeling weak in my muscles (mainly my legs), I walk slower now, I can't deal with the cold, my hip hurts, I'm having chest pains, head pains, right side of my neck is swollen, I'm having issues breathing, overly emotional at times because of medication, and anxiety.  I had an x-ray on my hip due to the pain and issues with laying down at times, but the x-ray came back that nothing was wrong.  I also did blood tests to see if I'm anemic still and if I'm having issues with B12, which could explain a lot of the pains and muscle weakness and I'm waiting on those results.  If those come back normal then something needs to be done with my medication.  I already got adjusted from 125 to 175, but the problem with Synthroid is that it's only a T4 medication and if your body can't make T4 to T3 then you need to take something else on top of Synthroid or switch to something like Armour which is a T4/T3 combo.  I'm waiting to see my Endocrinologist next month to ask for blood tests on Free T4, Free T3, and Reverse T3 instead of the TSH test. This would help adjust your medications better and this would let your doctor see if your body is having issues with T4 converting into T3. 

Some people on the Facebook pages on Thyroid diseases and cancer that I read have said it's been hard to find doctors that will look into T3 issues or prescribe Armour to their patients due to these doctors being misinformed.  One person said they had to switch to five to six different doctors until someone listened to them that Synthroid didn't work for them and wanted to try Armour.  The main problem is there isn't a lot of research going on Thyroid diseases and issues or at least it doesn't seem as some doctors are just playing guessing games with the patients' diagnoses and medication, not all doctors, but what I've heard from others it has happened.  I've heard of people that never get back to close to being their normal self after cancer and this has been going on for 10 to 30 years for some of them. 

I think the reason there isn't as much research is because there is a "cure" for thyroid cancer and some of the other diseases and illnesses like hypothyroidism and hyperthyroidism.  Though with so many people still having issues and going years to doctors in hopes to one day feel normal at least for awhile... we need to continue this research and find a better solution.  Also with more people developing thyroid cancer, we need to figure out why it's on the rise... what has changed to cause this?  It can't be always genetics since it seems more people are becoming the first one in the family to get it like myself.  There needs to be also more awareness for this cancer and also the other diseases and illnesses that can come from the gland.

I have learned throughout all of this that I have to do my own research and look to other people that have already experienced this and have been for years to see what I need to do.  I guess, some people do this anyways, but I'm used to doctors knowing what they are talking about.  The research has helped me a lot with my family doctor and she listens to me when I request medication like a muscle relaxer for my neck or blood tests to see if my anemia has gotten worse or if I have an issue with B12.

To the people that never have checked their thyroid or their children's, if you see signs of hypothyroidism or hyperthyroidism, which there is a long list since the thyroid affects a lot of systems in your body... get your blood tested for Free T4, Free T3, Reverse T3, and TSH.  It might explain some issues that you have been having and nothing seems to make it better.  Also doesn't hurt to get your thyroid checked every once in awhile since Thyroid cancer doesn't always show signs and symptoms.

Oh and also... I posted a video on youtube: My Dealing with Thyroid Cancer

... and the News

After getting the news and scheduling my appointment, I tried to call my mom, but couldn't get a hold of her.  This was understandable since she was on medicine that made her sleep most of the day.  I then tried to call my dad and again I failed.  It was 9:15am their time, so he was at work.  Justin decided to take me to the Jack-in-the-Box that just opened in our state (and happened to be the first one in Ohio) that very day.  This was a big deal to me since I used to live in Texas and been missing it for a long time.  This was his way of calming me down, though I was calm, but also I was still in shock.

Sometime after ordering my food and sat down at a booth my dad returned my call.  It was painful to tell my dad I had cancer.  I wish there was a right way, a true right way to explain over the phone that you have cancer to your parent.  I told my dad when my appointment was and he said he would look into plane tickets, hotel room, and talk to my sister about picking up my mom from the airport.  I expressed to my dad how I wanted him to come up as well and thought it would be best for my mom if he came.  For those that don't know me, I always put others before me, especially when I'm dealing with a major issue myself.

Most of the day is a blur to me now.  I remember we went home and told Justin's parents the news with his dad's reaction of yelling "OH MY GOD!"  I eventually told my mom, my siblings, and after getting to tell them I posted it on Facebook and Plurk so the rest of the family and friends can see the news.

When I was on the phone with my mom I learned that my dad was able to come, but was leaving the day after my surgery since he had to work.  This was fine to me until the next day when I got an email from my ENT's secretary asking to move my appointment a week earlier.  I quickly replied asking why we need to move it and explain my parents already bought their tickets to fly up from Texas.  It turned out that someone had the cancer far worse than me and needed a 12 hour surgery and she asked me if we could move it back a day.  I was not going to block someone from having surgery, especially someone that needed it more than me and I said I was fine with moving my surgery back a day.

My parents were coming up on Monday, my dad was leaving the Wednesday which is now my surgery date and my mom was leaving Friday.  I told my parents the news and my dad went to see about changing his leave date to Thursday, but was going to cost too much.  My parents are dealing with a lot of money issues from their move, so I understood, so no judging people.

The next week and a half was spent with Justin and me preparing for the surgery... getting me clothes that would be easier for me to put on afterwards, food to eat, a couch pillow with arms, and probably other things that I needed.  I also spent a lot of time on the internet on support group sites reading about other people's experience and talking to them.  Throughout this week I was mostly fine, but it wasn't until the week of that I started getting nervous.

Huey Lewis

After my first appointment with my ENT I went to have the barium swallow test on the sixth of September to see if there were any issues with my esophagus.  I had to stand with a white, upright table with a white screen in front of me while drinking this thick milkshake that tasted chalky.  It was not a fun experience at all.  I had to even drink a more water down "milkshake" while laying down on my stomach.  The last thing I had to do for the test was to swallow a barium pill, but for those that don't know me, I can't swallow pills.  I've never been able to and I wish I could because liquid medicines taste horrible.  Luckily the ones testing me didn't think I need to do the pill test since they couldn't see anything wrong.

By this point I should have gotten my test results, but no calls.  I called the office, but was told that lab results will be backed up due to Labor Day weekend and also there was a conference in Washington D.C.  Then the following week it was a game of phone tag with the office as they were trying to get a hold of me.  I finally got them on the phone during one of my breaks at work and was told they would give me my results on Monday after my endoscopy test.  I originally had an appointment with my ENT that day anyways.

A week and a half after my barium swallow test, I had to do the endoscopy to check further into my esophagus for muscle issues or any tissue problems within it.  This was interesting and I'm not sure if it's in a good way or a bad way.  Just thinking about it makes my one nostril hurt and the back of my throat taste like metal again.  Pretty much I had to eat and drink different things with different textures and sizes to see the reaction of my muscles while there's a tube with a camera on the end of it that went through my nose and pushed down my throat.  The one performing this was happy that Justin was there to help feed me.  Some of the foods I was not pleased to see on the table: applesauce and fruit.  Of course, my usual swallow issues never kicked in, but she said my muscles looked really good for my age and I didn't have acid reflux (my mother and my brother has this).

I was sent back into the waiting room to now wait for my ENT appointment that was 30 mins after the test, but was able to get in sooner.  We sat in the room that we were taken into by his nurse and waited for my doctor to come in.  I was trying to remain calm as I waited and also hoped that the test actually had results instead of having to do the biopsy again.  Oh how I hope I did not to have to do that again.  But then my doctor came into the room with some woman, I forgot now who she was, but I knew something was up.  Most of what happened in the room is now foggy to me, but I do remember him telling me I have cancer and that I will need to have surgery. 

Like I said in my other post I researched a lot on the cancers of thyroid, so I knew a good amount on it.  I think that's why I wasn't crying, but also I think I was also still in shock over it.  27 years old and having to deal with cancer.  Luckily with thyroid cancer there is a high survival rate, but still.  Cancer. It was just... wow.  Even right now I still can't believe it that I have cancer at such a "young" age.  I remember looking at my boyfriend and laughed a little saying, "First one.  First one in the family to get."

After that my doctor took me to his secretary to schedule my appointment for October 2nd (it was later moved back a day since another patient needed a 12 hour surgery), which was only a week and a half away.  I couldn't believe it... I still can't believe it. 

Something's Wrong

My journey all started when the last weekend of July 2012 when I was having difficulty breathing for the first time in my life.  It was hard to describe as I knew it wasn't a chest/lung issue, but something blocking in my neck.  Also I was having more difficulties with swallowing food and liquids, but I've had that issue more of my life.  Well actually the difficulty with liquids, even water, started about five years ago and anytime I experience it, it felt like the liquid in question formed into a marble, which made me refer to it now as the "marble effect".

Anyways, the breathing issue was driving me insane... like drowning and trying to swim to the surface, but unable to since *thinks* a log  has trapped your leg.  You are fighting to breathe, but unable to push the log off, so you can get free.  I finally decided to call my doctor, but wasn't able to get in until later in the week and the breathing got worse as time went on that day, so my boyfriend took me to the hospital.  They checked my chest by listening to it, ran blood test claiming they were checking my thyroid with the testing as well, and then x-ray my neck since I found a large lump on my neck (I noticed this while we were driving to the hospital).  At first the one doctor said that might be normal for me, but I told him it wasn't and that it was new.  They gave me a breathe therapy treatment where you breathe in this vapors from a hose connected to a machine... yeah, it didn't help at all.  They said everything came back fine, but I should ask my family doctor to order an ultrasound on my neck.

I ended up getting an appointment with my family doctor on August 3rd, 2012 in the morning and told her what happened at the hospital and what I was dealing with.  She gave me two options: one, to do the ultrasound or two, to see if my esophagus needed to be widen.  I, of course, voted for the ultrasound and was able to go to the town over to get it done the same day.  A week later I got the email from my doctor that the left side of my thyroid was enlarged with a nodule that was an inch in size and three smaller (5mm, 7mm, and 9mm) nodules on the right with all different makes.

Now let me tell you, 90% of people have nodules and most are not noticeable and aren't cancerous (and not all will become cancerous).  But if you have one that's 1 cm in size, you need to get an ENT to do a fine-needle biopsy.  Also if you have a nodule, even if it's small, get it checked every once in a while... like every six months (you can get your family doctor to order the ultrasound for you... it's cheaper that way).  If it gets bigger in size get an ENT to look at it.  To note, my largest nodule was 2.5 cm when I found it.

This was just the beginning of a major change in my life.