Monday, December 5, 2016

Papillary Thyroid Cancer... And the Aftermath

Hello everyone. It has been a while. Last time we talked I had just been diagnosed with Papillary Thyroid Cancer. A lot has happened since then.

On October 7th of this year, I had my entire thyroid removed. This procedure seemed so different than the esophageal cancer one from the very beginning. First off, the initial time for the procedure was in the middle of the afternoon. That seemed very odd to me. They explained it this way, "We do the younger ones first when it comes to surgery here. This is because they don't understand the reason why they cannot eat or drink on the day of surgery and some don't handle it well. Also, this way they don't have to sit and wait and worry. Youngsters are not as equipped as adults when it comes to dealing with all of it." I fully appreciate and agree with that. Added to the fact this was done in a smaller town hospital with limited space and availability, it makes sense to me. In some ways I think that kids not being "as equipped to handle that kind of stress," is a blessing in disguise for them. If it is not known or not fully understood about the issues and complications that could arise, then there is not a lot of basis for worry or stress, other than the actions and reactions of the adults around them, In my opinion, they are rather lucky in that regard. Their main worry is not being around their parents or family and friends for a while, or I would ASSUME that is the case. They know they are sick and they also know that the doctors will help them to get better. They may not know all the little details of what might happen. Usually anyway. And being a parent, I would think long and hard about telling the youngster about all those details. As a parent, I want to protect them. Do I think they would understand the situation? Maybe, depending on their age and mental level. Would it help them to know about all the little things that might go wrong and what might happen to them? Again, only my opinion here, I don't think that part would be needed. At least not at that point, but again that is based on the age of the child and their level of poise and knowledge and maturity. A lot of that type of detail is scary for an adult let alone a child. Telling it to a child is pretty much cruel in my book. Do you lie to them? No. Absolutely not. If they ask questions, explain it to them as best you can and try not to scare them. In these cases I look at it as it is not a lie to keep the truth to yourself. Tell them later... After. That way you can tell them how strong and how brave they are. They can make the connection that they beat whatever they had and came through it. That way, if something like that ever happens again, the mindset they go into it with might be in a stronger place from which to fight and beat whatever it is they have. If you have been reading this entire blog you know how I feel about mental stance during and after. To me, it is very important. Also, I'm talking "worst case" types of issues here. I realize that no surgery is easy or free of possible bad outcomes, but I am also sure you get where I am coming from. If it is a tonsillectomy, or ear tubes, or something more "common," then the stress and worry tend to be a lot less because there are fewer possible issues and those issues are less common. The kids with the more emergent issues are the ones I am talking about here... But I completely have left the path I started on here.  Kids are just that important to me. Felt the need to talk about kids and their illnesses and how I would handle it, so I did. The bottom line is that I agree with taking them first. Get them in, get them out, and get them back with family to start their healing and recovery process. I'm down with that. And not back to where I was heading to begin with...

So a mid-afternoon start time for the surgery. Usually the procedure takes three to four hours. They make an incision at the base of your neck and work from there. Below is are two pictures of mine.

Taken the day after surgery, also the day I left the hospital.

 Taken after about 3 weeks of healing, the day the steri-strips were removed.
The surgeon needs to be careful of several things. These include taking great care in working around the vocal nerves and also moving and maintaining four smaller glands called the parathyroids. The Thyroid is just under the adam's apple, so it is very near the vocal chords. If they mess up the vocal nerves, the voice is messed with. That's pretty much self-explanatory. The parathyroid glands and what they do? I had no idea. Here is what I learned. They are usually four of them. They are about the size of a grain of rice and are physically connected to the thyroid gland. They control calcium levels in your body. In a tyroidectomy they have to remove those small glands from the thyroid without harming them so they can continue to do their job controlling the calcium in your body. If they get messed up it can affect your heart, nervous system, kidneys and bones if uncorrected. They can definitely correct having to remove them or whatever that with supplements and pills or whatnot, but they would rather you keep your original equipment, You'll also notice no stitches or staples on the incision. In my surgery they used internal stitches that dissolve and get absorbed by the body, and steri-strips to help keep the site closed and covered on the outside.

The surgery went without any incidents, however they did find an odd growth behind the thyroid. The surgeon took it out and sent it to be tested immediately. He got the results before the operation was complete. It was listed as "parathyroid tissue." The doctor didn't buy that. He said that if it were parathyroid, the calcium in my blood tests would have been much higher. He thinks it was a goiter, Bottom line is that it was benign, no cancer, and it was removed too. He actually said that had it been parathyroid, he "could have put it back in."  I had to chuckle at that. It wasn't parathyroid and my calcium is pretty much normal. The morning after surgery it was a bit low... 8.0, Normal is 8.5-10.2, so they were thinking about not letting me go home.  I got some higher calcium food and took a couple of calcium tablets, and it was 8.4 later that day and we all felt better about that.

Another oddity, pretty much immediately after I got out of recovery and into a room, I was given supper! They gave me meatloaf, mashed potatoes and gravy, corn, jello and juice. And with no swallowing issues I might add. That part amazed me. Lea Ann too. We both figured I would be on liquids or soft foods for a while after. To be honest, nothing in that meal was overly hard, but it sure tasted good! Good tasting food at a hospital is an oddity in and of itself, let alone eating that soon after getting out of recovery.

More oddities... Had surgery on October 7, got discharged on October 8. Wham, bam, thank you ma'am. And after maybe 3 days of slight soreness, I was pretty much back to normal. Yes, I had to limit lifting and straining to allow the incision to heal well and not rupture. Compared to the esophageal cancer surgery, this was an absolute cake walk, at least as pertains to things physically. Don't get me wrong, it is still cancer and that is not anything to joke about or make light of, but this seemed almost easy. Admittedly, I am not done yet. I still have to go through the radioactive iodine capsules and all that entails (which I will write about further in another blog entry later), and I will have several follow ups with radiation oncology and also the endocrinologist.

Lastly, the pathology on the thyroid went as follows:

  • 1.5cm (0.6") nodule, right lobe of thyroid, tested positive for papillary thyroid cancer
  • 0.8cm (0.3") nodule, right lobe of thyroid, tested positive for papillary thyroid cancer
  • 0.4cm (0.15") nodule, right lobe of thyroid, tested as a benign goiter
  • Left lobe of thyroid - clear
  • Extra tissue behind the thyroid removed, tested as benign parathyroid tissue, but the doctor disputes that
So the cancer was staged at Stage 1, no metastasis, no lymph nodes involved (S1N0M0). We were also ensured that this was not a metastasis from the esophageal cancer from 2012/2013. So we caught it early again. I cannot stress enough how much it means to catch these things early. Listen to your body, and follow the schedule of doctor visits and tests so that you can catch anything as quickly as possible. Early detection and correction is the key! 

Thank you all for staying with me through all this. I appreciate your reading and your comments! I can only hope that they writing is helping someone somewhere to understand how someone may be thinking... at least as pertains to cancer.

Saturday, September 10, 2016

Follow-Up Scans and a New Glow

Hello everyone. My apologies for being gone for quite some time again. I know I say that a lot these days, but honestly things are getting back to "normal" and life was happening which was taking me away from the blog. That added to the fact that I had actually come to the end of the major part of my main journey with the esophageal cancer and was running out of things that I felt the need to write down. The rest was just continuing physical therapy and doctor's follow-ups. As of this entry I am coming up on 4 years clean of the esophageal cancer. A very good thing!

Earlier this year I went in for my yearly follow-up PET scan. Everything looked good in the esophageal area, the stomach and liver looked good, colon was good, but there was a glow seen in the area of the thyroid. A slight glow. Not too bright which usually means not a lot of activity, but it was new and it was glowing. My gastro doctor said that the radiation could cause nodules and the glow on the scan, but it needed to be looked into due to my history with cancer as well as my family's history. He said to get an ultrasound of the thyroid and also see an endocrinologist. The ultrasound was done first. Three nodules were found on the right lobe of the thyroid. One was 4mm, one was about 8mm, the third was a little over 10mm. For reference, one inch is a little more than 25mm, so these were all under half an inch. We took that information and went to the endocrinologist. Based on the looks and the findings, the doctor decided to have another ultrasound to measure the nodules to see if they had grown at all since the last ultrasound, and also to do an ultrasound guided needle biopsy of each.

A needle biopsy of the thyroid is officially the oddest feeling I have had in my life. They use lidocaine to deaden the skin, then use a thin needle to take the biopsies they need. The odd feeling is when the needle enters the thyroid. It doesn't hurt, but it is a pressure. Then they have to literally bounce the needle to get cells they need into the needle and you can feel that vibration in your throat. It is a very odd feeling. They use a syringe to pull the cells up into the needle and take it out. They then give the sample to a lab person that is in the room with you. They immediately use a microscope to check to see if they have gotten enough cells for the testing. If not, they go in again with another needle. They biopsied all three of my nodules. No issues there. Not sore or anything. I was told that the nodules had not noticeably grown and that the endocrinologist would have the results in a few days.

We met with the doctor six days after the biopsies. I have a new diagnosis - Papillary Thyroid Carcinoma. Cancer was found in two of the three nodules (the third is a small benign goiter).

This is still new to me and I am in the middle of gathering information on it and trying to wrap my head and emotions around it. What I know so far is this: This is the most common form of thyroid cancer. It usually hits a little younger, the average age being 30-50, and it hits more women than men by a ratio of about 3:1. So I am once again not average. Older than the average patient and on the low end of the gender ratio. 10-year survivability of this is 80-90%. It is not overly aggressive and not usually prone to spread. Generally this kind of cancer is not treated by chemo and/or radiation unless it has spread to the surrounding lymph nodes or other tissues. So far that looks like that has not happened. I will be getting a Total Tyroidectomy sometime at the end of September or early October. Afterward I will likely have to take radiated iodine in a capsule form once or perhaps twice to cleanup after the surgery. Also, I will have to take thyroid medication from then on for the rest of my life.

It is still too early for me to have a real feel for this or to put my emotions down in this form. I am doing a few things differently this time around though. I am trying to get all the information I can, I am asking people who have had this and had the operation I am having what I can expect through this whole thing. This has been going on over the last two or three days. Emotionally, it was still a shock, but not the gut punch I had with the esophageal cancer. Not sure why exactly, but I expect it helps to know that this is not really aggressive, not a lot of metastasis, generally no chemo or radiation, and even the surgery happens one day and usually the patient is out the next day and back to "normal" type stuff within a week or two. It is still cancer, and it is still scary. I'm still coming to grips with it. As I do I hope to write more here and perhaps help anyone else who might have this, like I tried to do with the esophageal journey.

If you are so inclined, please keep myself and my family in your thoughts and prayers. If you have gone through this or were a family member or care-giver for someone who did, please let me know. I'd love to talk with you about it.

Also, thank you all again for following along here. Your attention and comments are always welcome and appreciated.  :)

Friday, January 29, 2016

Three Years Post-Surgery: Now vs. Then

Hello everyone!

It's been quite a while since we connected. Basically an entire year, give or take a few days. My apologies for that. I was chugging right along with this and suddenly life reasserted itself and I let things slide, at least as pertains to our communication. I'm going to try to get back into the swing of things here so our connections are not so few and far between. I appreciate your staying with me after all this time. Thank you!

In any event, as the title states, I passed my three year anniversary of surgery on January 25, 2016. At last check I am still clean and clear, thank God. Seems like an eternity ago when all this started... Which is odd for me. Usually major things in my life feel like they were a long time ago but also within the last five minutes, but not this time. Not this memory. This one almost seems like a dream. If it weren't for the physical evidence, the scars and whatnot, I might actually start believing it really was a dream. With no background in psychoanalysis and knowing no one that is a therapist, I can only make logical stabs at why this might be. The first and most obvious one, cancer is scary. Even after three years I still do not want to think about it. Maybe somewhere deep in my psyche I think that if I think about it too much it will come back. I know its quite possible that it might come back, but that is a medical thing and has nothing to do with thinking about it too much, but I also am a strong believer in mind over matter. I believe that your mental stance is a big part of recovery as well as protecting you from future "attacks from our not-so-friendly neighborhood disease." From any disease or problem for that matter. How did I come to this conclusion? It took a while. I had to take time to heal and get some distance for perspective. Granted, its only perspective from my particular journey and each journey is different, but as I have said in the past, there are common threads. I'm hoping this is one of them.

Mentally I think I am still attempting to cope with the whole issue. Is cope really the right word here? Hmmm. Understand? Process? Come to terms with? Get a handle on? Yeah, I think cope is the best fit. Some days I totally forget about it for while. Those are the best times. When things get done without the mental "stop and evaluate the situation to make sure you can do it" thing.  I hate that but do it almost all the time. Here's the thing, I am one of those types that will try something a couple or three times.  If I am not as good or better at it as anyone else in the vicinity, I look at it as a failure on my part and I rarely do it again. Been that way as long as I can remember. Why? Who knows. My parents were not the driving force behind it. They always encouraged me to keep trying and get better. Somewhere in my little head, the idea hatched that if I am not as good as or better than anyone else around me that does it, I am not going to do it anymore. I actually get embarrassed if I'm not that good. One of the many personality quirks that hang around here. That trait almost stopped me from writing this blog, but the information and message I wanted to give was too important to just let it go. But I digress...  Getting back to the stop and evaluate statement from before, I find myself doing that at almost every decision. Physical work like mowing the lawn, shoveling snow, cleaning out the rain gutters, rearranging furniture... I don't have the strength or stamina I used to have. So whenever I have something physical that I want to do my brain pauses and an internal conversation starts between different parts of my twisted little mind. It might go something like this...

Brain sees the task,
"I need to clear the snow from the driveway and walks."

Old pre-cancer thinking responds (with a little help from the ego),
"Let's do it!"

Post-cancer thinking responds,
"Um...  that's pretty heavy work, even with a snow blower. Should we think about getting someone else to do it?"

"Heavy schmevy! We've done this a thousand times before. Just go out and do it!"

"But we're not as strong as we used to be. What if we get started and can't finish it?"

"Just DO it!  Geez!"

"Ok fine...  but you know what will happen if we can't finish it, right?"


That is a little snip of a typical inner monologue for me when it comes to anything physical. Bottom line is that to this day I second guess myself on almost everything, especially since the surgery.  It majorly sucks. I'm learning to deal with it... sorta, kinda.

Some parts of being this way with things of a physical nature are much harder to deal with than others.  What happens is I will start doing whatever it may be, then immediately start looking for things that I'm doing wrong or not as good as I used to. Putting pressure on myself to correct it. I'm sure you can imagine it doesn't take long to get to the point where the pressure is just too much to seem to do anything right, so I just stop. Sad, I know, but it is the truth. The lesson here is this; you can only be you. You can only do what your body allows, so allow it to do to the fullest potential that it can and be happy with that. NO Pressure is needed. As a 52 year old man its silly for me to compare myself to anything I was doing when I was say in my early to mid 20's. Very few people I know could stand up to that kind of comparison against themselves.  If you are one that can, more power to you (and I want lessons!).  If you are like me, and likely most other people, a completely healthy person in their early 50's wouldn't stand a chance compared to their younger selves, let alone after a major illness and surgery and all that the cancer entails with chemo and radiation and the like. Now see? I can say that, and I fully believe it and I think everyone should think that way...  everyone except me. I can't think that way. I must have been absent the day they taught that in "how to use your brain" class... but I am still trying.

That kind of thing leads directly into the emotional side of things. Emotionally, I try very hard to put up a crack-free, seam-free, happy-go-lucky front at all times. I use humor and laughter and joking around as a crutch and as a deflector. Most times I am that way...  well maybe not crack- or seam-free, but smooth enough. Much better than I used to be to be sure.  Back in the beginning, if you read previous entries in this blog, you'll see how much of a wreck I was. I was a total ass in pretty much every manner, at least for a while. I was wearing chain mail under armor, behind a shield, behind mask after mask, behind several walls I had built up to try to protect myself. Thing is, all it did was isolate me and make me feel worse. People can only beat their heads against those walls for so long before they have to stop and tend to their bleeding head before they try again, if they don't leave all together. I was lucky and have people around me that are even harder-headed than I am. We all have people like that. Our support systems, our lifeguards, our guardian angels, our family and friends. I plead with you to not let it get that bad for you. Don't be like I was. Don't get totally closed off and closed minded. Open up. Talk. Yell. Laugh. Cry. Ride out the feelings like a surfer on a wave. If you stand still in an onslaught like that with wave after wave after wave, you are bound to crumble and implode. NOTHING can withstand that kind of pounding. Regardless of how strong you think you may be or how strong the walls you thought you built. They will crumble and fall. Trust me, I know. I was literally seconds from that on quite a few more occasions than I care to admit. To this day, three years plus later, I still will be sitting down doing whatever and suddenly a wave of sadness will smack me in the back of the head and I will start to cry. It doesn't last. I won't let it. I can't let it. I have to be better. I have to be strong. So I fight it back and press it down and internalize it very quickly. But it happens. Pretty much every day. A lot of times more than once a day. Is it better than is used to be? Yes. Will it ever stop? I have no idea. Wish I could be more positive there.

Feelings and emotions seem to be deeper and stronger than they have ever been. Maybe because after a life changing illness you tend to see things differently and take less for granted. That sounds so very much like a "canned" response, but it really is true. You look at things differently. Enjoy things more. See the beauty in things and less of the negative. Love deeper. You get more emotional. I was never a crier (again with the crying?) at movies... at least not until after the surgery and recuperation. Now I do. I still do my best to hide it. Why? Not really sure.  Maybe it is the male upbringing about boys don't cry. I'm sure those closest to me, like Lea Ann and our kids, can see it. They just have the decency not to throw it in my face. Hopefully your people are like that as well.

The moral of this whole entry is just this... Even after three years of recuperation and healing, there are still many things that this cancer and all it did to change my life that need to be tended to. There are mental things, physical things, emotional things, psychological things, all kinds of things... that I am still discovering and learning to deal with on an everyday basis. The same will likely be true for you. Your path will differ from mine. No doubt. No two paths are the same in these cases. Not even for the same person if they have to travel that same way more than once. But there are enough similarities that I hope I can get you to see and look at and understand so that you don't feel so alone. So that you don't feel like no one understands. So you don't think you are the only one in the world feeling the specific feelings you are having or had. I know. I understand. I went through it, both as a family member and caregiver, then as a cancer patient that is trying very hard to become a cancer warrior. I want everyone who is reading this, patient, caregiver, friend, family member, nurse, doctor... anyone, to become a warrior too. There can never be enough warriors. Whether you win the battle or might be losing it, being a warrior means you fight the best fight you can for as long as you can. It also means that you are allowed to lean on the other warriors around you. No army of warriors can stand as individuals for long. Not all of us can be Rambo or want to be. I'd rather be surrounded by my fellow warriors and be able to fight by their side. Win with them. Lose with them. Laugh with them. Cry with them. Lean on them. Rely on them. Hug them. Help them when they fall and accept all that that back in return.

So I am asking you... Please be a warrior with us. What do you say?