Surgery for Christmas

I met with Dr Denys this morning and got some answers.

The biggest questions I had were

• Where will the cut be and how long?
• Will the surgery be more like the first or second surgery as far as recovery?
• When could I do it?

He answered these and even drew me a nice picture. If you have ever gone to see Dr Denys there is a good chance he has drawn you a picture. I asked him to draw a line on my neck where the incision will be so that I can show my wife. He just made a small dot which is going to be the top of the incision. It is about an inch below my jaw bone under my ear. This means I will have a vertical cut this time where the previous cut was mostly horizontal and low. Good news is that it is mainly skin and fat tissue that will be cut so there will be very little or any messing with muscle, nerves, etc...Hopefully that means it will heal quickly. (Maybe a post Christmas snowboarding trip is still a possibility)

I edited the drawing with photoshop to show the green area in his drawing is where lymph nodes have been removed already. The yellow area is where he will remove more lymph nodes. The theory is that if we remove just the one lymph node again we may see another in a few months. There could be small cancer cells in the other lymph nodes that are not able to be detected yet. If we remove all of them then we will increase the odds of not having to do this again. 

I scheduled the surgery for Dec 18th. Which is the day I went into the MTC back in 1996 14 years ago. Man I am getting old. 

It could be an outpatient surgery with a drainage tube/bag but there is a chance I would stay a day at the hospital. We will have to wait and see. He said to plan on going home but bring a bag just in case. 

Dr Denys said the surgery would last around 1.5 hours and he knew exactly what needed to be removed and what he was going to be doing. There is not going to be much or any exploring or discovery while I am sliced open and under.  

He said the drain tube would stay in for maybe 3 days and then he could take it out. So hopefully by Christmas I will be feeling mostly recovered and ready to play with the kids.

The day before Thanksgiving (last week) I got a call from Dr Maturlo. (Endrocrinolgist)

I had an appointment the day before that I missed because I was expecting a call before coming in just in case I did not need to come in at all.

Well, come to find out I should have gone in. The tests came back with elevated levels of thyroglobulin and the scans showed another cancerous lymph node the size of a small marble. Basically the same thing we found out in March only 8 months prior.

What does this mean? More Surgery.

Dr Maturlo told me to meet with Dr Denys and have the lateral lymph nodes removed.  Basically, I need to remove them all and be done with it. I could tell she was somewhat frustrated that there is still cancer in my neck from the Thyroid cancer that was removed 3 years ago. Of course her frustration is matched and more intensified by mine where after I hung up I could not help but wonder "why did we do surgery in March?".

I immediately called Dr Douglas Denys' office and set up an appointment for the following week. Until then I did not have many answers and I had to wait a week. We told a few people, but not many since we didn't know the details yet.

Bad news before an anticipated Thanksgiving but nice that Dr Maturlo called me to give it to me rather than wait for a future appointment that could have delayed things and cost more money.

Testing Testing and more Testing - Am I clean from cancer yet?

Two weeks ago I did what I hoped would be the last of the large tests to see if the cancer was gone or not. It started with a shot in the rear end with Thyrogen. (around $1300 a shot) I then returned on Tuesday for the second shot in the neighboring cheek. (another $1300, dont worry, having met my $5500 deductible this year I am only responsible for 20%) By Tuesday I have spent an ipad3 worth of money on a sore rear in an effort to trick my body into thinking that it is HYPO thyroid. It is critical that I am hypo thyroid for my blood test later in the week so we can see if my thyroglobulin levels are where they were supposed to be. I can either stop taking my synthroid for 2 weeks or get this shot. Looking back on this I am wondering why I did not go two weeks and buy an iPad 3. Since I was in Provo already I did get to run a few errands one of which was buying a $10 bow saw at Sears and cutting a few large branches that fell on my rental property near BYU. Something about cutting some wood into smaller pieces that was therapeutic that morning.

On Wed I had a weird unrelated visit to the ER after having unbelievable abdominal pain.

On Thursday afternoon I went to do the blood tests.

On Friday I was able to move my appointment for the CT (Cat) and PT (Pet) Scans up from 8:30am to 7:30am since I had a flight to catch to Phoenix and had to be at the airport in SLC at 12. When I arrived to the Utah Valley Outpatient building (the one near Kneaders) after registering they pricked my finger and managed to squeeze out an enormous amount of blood to test my blood sugar level and test my kidneys. Those tests went well so they put an IV in my arm and gave me some radioactive liquid in a syringe to prep for the tests. Then they had me sit in a dark room and drink a lemonade (they asked if I wanted different drinks and I chose lemonade since I rarely want a soda). I sat in the dark room on a recliner (hospital style) with a blanket (also hospital style) in scrubs for around an hour in and out of conscienceness. Eventually they came to get me to take me to the room with the petscan/catscan machine.

I layed on the thin bed with my arms on my side (held in place with a velcro strap) and the bed moved into place. First were the cat scans where I moved back and forth 3 times and each time the machine would say (breath out, breath in, stop breathing). After the CT Scans the bed moved outside of the large donut so only my feet were inside of it. The PT scan took around 35 mins and every few minutes the bed would move and part of my body closer to my head would be scanned.  Eventually it was done and I changed my clothes and headed home for final travel preparations and goodbyes. I did get a paper to show the airport security just in case I set off the radiation detectors, but I did not get to use it as I set nothing off out of ordinary when I went through security.

Now I had to wait till next week to see what the blood, CT and PT scans showed.

Nothing new to update for now

It has been a few months now and I can almost forget having had two surgeries, 3 crazy low iodine diets, tons of tests and medical expenses. I will have to do more tests later this year but for now I keep taking synthroid and tomorrow I have a physical for Scout Camp. I hope my cholesterol is not high still. I am not sure if that was a result of the Thyroid cancer or not, but it is really strange to have high cholesterol when I eat healthy, exercise a ton (I biked 75 miles last Saturday), and take a very good supplement. At the same time there is some talk of high cholesterol not being the real culprit for heart disease so maybe I am just fine. Either way I'll find out tomorrow.

I have been staying busy with my lovely family, my home security systems utah business, and my natural medicine business with essential oils. Stay tuned for a future update.

Post Second Surgery

Well I got to the hospital around 6:30am yesterday with my wife. We checked in and I got changed into some amazingly comfortable paper clothes. (except the socks were cloth, but they have grip on both sides?) I waited for a little while so Sheena and I played some games on the ipad. They put an IV in me and a blood pressure band on my other arm. They also put the pulsating calf wraps on me. Someone came from Nuclear Medicine to put some radiation into the IV so that Dr Denys could tell where my parathyroid glands are and also check for anything else that should or shouldn't hold onto the radiation.
Dr Denys came in and spoke to us some. He put an X on my neck. (Marks the spot) He got the Geiger counter and tried it out and showed us how it worked. After a few minutes he said he would see me in the surgery and left. A few minutes later they came to get me and I said good bye to Sheena. That was the last thing I remembered was saying goodbye and the bed starting to roll.

I woke up around 10 am wondering if the surgery was over or not. I felt my neck and there was a bandage there and being around 90 minutes since I was last conscious I assume it was done. I could hear other things going on around me but it took around 15 minutes until they came and wheeled me to a room where Sheena was. There was another man in the room with a sheet curtain separating us. It was amazing how alert I was but my body was not ready to really move much. I was really anxious to remove the IV, blood pressure band, and calf pulsing things. (They are supposed to prevent blood clots)

Sheena said that Dr Denys called her and told her that the surgery went very well and that they removed the node and it tested positive for papillary carcinoma. He told her he felt that this should be the last of it and he did not think I needed any more radiation therapy, but I would have to talk to the endocrinologist.  What is strange is that this node does not react to the radioactive iodine. The question remains if it was really small and starting to grow 2.5 years ago and it was missed, or if it started growing after the surgery. But either way, it is gone now.

So I was feeling a little too warm and claustrophobic and ready to get stuff off me and get out of the hospital. Within a few minutes I stood up and went to the restroom with my wife helping me. I needed some help because I was so light headed still and ready to fall over at any time. After going to the restroom I returned to the bed in my shared room and Sheena helped me change back into my normal clothes. Once I was back in normal clothes we just laid on the bed for a few more minutes. We left the hospital around 11:30am and headed home.

I should have been pretty hungry considering I was fasting still, but my throat hurt more on the inside than the outside. Probably from the breathing tube or gas tube they had in my throat to keep me under. When I got home all I wanted to do sleep. Since my throat was sore I was drinking tons of water and downing doTERRA Onguard Throat Lozenges. After around a 1-2 hour nap I was ready to get up and eat some lunch.

Sheena made me a grilled cheese and a smoothie. I ate it all pretty quick, including my supplements and some essential oils in capsules. After that I was feeling pretty good so I went up to the office and made some calls for an hour or two. After I was done with the calls I went for a little walk outside with the girls and I felt pretty good.

A little while later my mom and Terry arrived with Cafe Rio and we ate and talked and played with the kids for a couple hours. Finally went to bed around 11:30pm. What a long day. I felt ok other than the sore throat and soreness around my incision, but I wondered if I should have spend more time laying down and resting and not talking.

This surgery was so much easier than the last surgery that I had done around 2.5 years ago. I feel pretty good and am looking forward to getting back to running and biking within a week or two.

I am overwhelmed by the amount of concern and support from my neighbors, friends, and family. This experience seems much lighter with the help and prayers of so many. Thank you so much. 

Surgery Second time around

I am going into the hospital in American Fork for the second time for surgery on my neck tomorrow morning. I need to get there at 6:30am and I am optimistically predicting I will be home by 11am ready to continue my day. I am hoping the surgery will not bring a long recovery. (last time was not as easy as I thought)

Hopefully they will remove the node in question and I will live the rest of my days staying out of hospitals, with exception of when we have more kids.

I am hoping there will not be any radiation therapy following this second surgery, but one step at a time.

I have another hour and twenty minutes till I need to start my fast.

Dr Visit with Dr Denys for Consultation about the rebel node

It took a week to get in to see Dr Denys. Which I felt pretty fortunate about, considering his schedule is pretty booked most of the time. It was a typical visit where I waited for a while (maybe an hour).  At least I had my iphone to text people and play games and read, until it had less than 10% of power and I thought I should turn it off so I can call my wife on the way home.

It was weird going to the same room where we were originally given the news that I had thyroid cancer over 2 years ago.

Dr Denys looked over the tests etc...and decided that I should remove the jelly bean size node in my neck. Despite the negative pathology reports, we had a high number for the new thyroglobulin test. We set a date for March 20th to have it removed. He thinks we should be able to do an outpatient surgery, which means I will be able to sleep at home not the hospital. (much lighter on my HSA)

Here we go again for surgery.

Biopsy guided with an ultrasound

This was a pretty cool idea. Stick a needle in my neck and watch it on a screen so you know you are not sticking the needle in the wrong spot. Genius right?

The day came for the the biopsy and I found myself waiting for an hour in the waiting room. After an hour they called me back and told me that they are not sure if they want to do it because they are worried that the tissue samples would not be kept frozen since it was a Friday and they did not know if everything was the same on Saturdays for the labs doing the testing. Nothing like waiting an hour to wonder why someone did not do some homework before scheduling me on a Friday and making me wait. This is just how going to the dr is like. Waiting and you cannot ever be concerned with the endless amounts of wasted time due to inefficiency. There has to be a doc somewhere that is efficient and doesn't waste patients time and treats patients better.

Finally, they discovered the tissue samples would be fine if they took them out and they asked me to change into an open robe with my shirt off. They had me lay on a table and cleaned the area with the iodine like sterilizing stuff that is dark orange and makes a mess. The radiologist came in and put a general anesthetic in my neck and then started taking samples. He must have gotten around 8-9 samples since he was in and out around that many times. I did not mind since I could not feel much and I wanted to make sure the tests had enough samples. Soon enough the poking with a needle while looking at a monitor was over. (they should have had a monitor built into the ceiling tile so I could watch what the doc was watching on the screen behind me) They cleaned off the orange stuff and then put an interesting bandage that had a cold compress built into it. But why they did not shave my lower neck (upper chest some) was beyond me. That hurt more than the process itself when a few hours later I had my wife rip that thing off as fast as she could.

It hurt for a few days, but I read and heard that using some of the doTerra essential oils would speed the healing and reduce the bruising, so I tried that. I was pretty happy that it healed quick and did not stop me from most of the physical activity I usually enjoy.

The results. Of course the annoying thing about tests is that you do not get results until a day or two or even three later. Many people start to know you are going in for test beforehand and the moment a test is over friends and family want results. Well so do I, so their instant questioning only worsens the frustration. It is not a friends fault that they are trying to be a good friend and show they care, but being easily annoyed at times it makes me want to shake them up and tell them they obviously have not been through our amazing medical testing system lately. Even if you want to get a blood test for anything simple they usually send it somewhere and you don't get results for a day or two.  This blog may be sounding that I am hyper critical, but most of these things are just thoughts and sarcasm, as I usually am not really bothered by most of these things that I want to improve.

So the test was done on Friday. On Monday we got a call from Dr Maturlo and she said that the pathology was negative, but the thyroglobulin test came back extremely high, like 28,000 in some unit. So she wanted me to meet with Dr Denys (the ENT surgeon that removed the thyroid to begin with).  So good news, but not that good, considering something is still wrong even thought the pathology doesnt show it.

Low Iodine Scan - Uptake

I thought doing the scan or uptake was a waste of time after doing it a few times already. Dr Maturlo had me do an ultrasound which I also thought was a waste of time.

The good news was that the scan came back negative, there was no cancer tissue that was responsive to the radioactive iodine (r131).  But I did have a higher than normal level of thyroglobulin during my blood test while I was hypothyroid. So when Dr Maturlo called with these two tidbits of news she also asked that I go and get an MRI. My wife encouraged me to go that day so I went and got an MRI. An MRI, must be a form of torture in some countries. Sitting still with a cage on your head reminds me of that movie, the man with the iron mask. When I got there they asked me to change into a set of scrubs. I did bring my Serenity essential oil with me this time around to help me relax and sleep. It helped and the 45-60 min went by fast as I was mostly asleep.

I asked for my own copy on a CD on my way out. I figured since I just paid around $1000 for that torture device, which was actually pretty relaxing this time around, I might as well have something to show for it. When I got home my wife and I looked at the MRI, and of course it all looked crazy and we did not know what we were looking at.  As you would guess my wife found many things that made her worried from looking at the MRI.

We got a call the next day from Dr. Maturlo and she wanted to meet with me right away. That could not be good, right? As we guessed they found a mass that was around 8mm x 12mm. I assumed it was like a jelly bean or so. The next step was to either remove it or try and figure out if it is thyroid cancer coming back or not. We decided on me having a biopsy with a guided ultrasound.

Low Iodine Diet the third time around

The low iodine diet was much easier the third time around.

I started to make my own almond milk by soaking one cup of almonds in water for a few hours and then blending them with 4 cups of water. After they were blended I would strain out the gritty stuff using an unused nylon of my wife. I would usually add vanilla and some sugar to make it taste better.

Once I had my own almond milk I could make a protein shake using it as a base. Using protein powder from brown rice (vegan). Which also helped that after watching the movie Forks Over Knives, we started getting plant based protein powder instead of whey or animal based protein powder.

I also already knew I could eat Frosted Mini Wheats cereal. But now having milk was a nice addition.

My wife found unsalted peanut butter and I added iodine free salt to it.

She also made fresh bread a few times. Both wheat and french bread.

The ginger snaps that she made that did not have iodine in them were especially yummy.