No Action

So I have been on this cancer journey for a while now, four years exactly and it has been one very bumpy ride full of many different twists and turns. Today is no different as another twist is added to the story. Most cases of thyroid cancer can be treated with removal of the thyroid, radioactive iodine treatment and then a pill for the rest of your life. It seems simple enough, right? However, it has been somewhat more of a challenge in my case as I have had continuing persistent disease despite going through all the traditional treatment methods.

So this pesky cancer still remains on my laryngeal nerve which is under some fairly extensive scar tissue. Trying to make a second attempt at removing it surgically poses risks of causing injury to the nerve, which in turn could have a drastic effect on my voice; this is something that my surgeon doesn’t really want to do as he is not sure that he can get to it safely at this point. My case has also been reviewed recently by a multi-disciplinary team of doctors that included endocrinologists, endocrine surgeons, and interventional radiology and other folks to determine if other less invasive procedures such as ethanol alcohol ablation or radio-frequency ablation could be utilized. However, those procedures pose an even greater risk as it could potentially paralyze my vocal chords and put a hole in my trachea. So now the decision is pretty much to do nothing but wait. Knowing that I still have these cancer cells housing and residing in my body has been very difficult to say the least and I would do just about anything to have this cancer gone.

I don’t know if you have ever lived in the south and with the heat and humidity comes along with it all kinds of pests. One particular kind that I just absolutely loathe is the cockroach. When I lived in Louisiana it seemed like they were everywhere. It is really disgusting when they invade your house and they seem very hard to get rid of and just when you  think that you have zapped them all, another one appears. That is what this cancer kind of feels like; we’ve tried pretty much every method known to rid my body of this disease, but it just doesn’t want to leave!

So we have done this waiting and watching for the last three years and I was hoping that with these changes in the appearance of the nodule that these other additional options would be able to be utilized. I am a very action oriented person and if I see a problem I find a way no matter how, to find a solution to that problem and just plain fix it! To play this waiting game and not doing anything has been very challenging. However, sometimes the reality in life is that there are simply no clear answers, which appears to be what is happening in my case. Maybe perhaps then the real answer is that NO action is the best one of all! After talking it over with a very good doctor friend he’s made me see this with a different set of eyes by thinking in terms of the bigger picture.  He raised the following questions and something I had to think long and hard on.

  • Do you want to kill some cancer cells and assure yourself you will paralyze your vocal chords?
  • Are you willing to accept the resulting effects of what could happen?
  • Are the risks really worth it?

My entire medical team has answered a resounding NO, that they do not feel that these other non-invasive procedures are going to be of any benefit to me and it is most likely not going to extend my life by any means. Even if they did try these procedures there is still the likelihood it could come back again, especially given the fact of the aggressive tumor that I had. On the other hand, this remaining cancer could sit dormant for many years and possibly forever, so why not wait this out and save myself some heartache and grief?  The resulting effects of what could happen would make my quality of life go downhill mighty quick and why put myself in that situation? Now I think the light bulb has finally come on for me to realize the magnitude of what could happen and I am not sure that I want to expose myself to such great risks. The way my luck has been in this journey, I simply would not have a good outcome. If I am getting the same feedback from all these medical experts, it would be wise of me to listen and heed their advice.

For the longest time I always kept thinking to myself, why are the doctors doing this and not taking any action? The fact of the matter is that their inaction was indeed the best action of all! My medical teams have always done what is in my best interest  and I just didn’t even realize it until now. They have probably saved my life, or in the very least have saved me from more complications that I just don’t need; in years to come they will most likely be saying to me “ I told you so.” Sometimes it is hard to accept those tough decisions in life as we want what we want. They were giving me that tough love just like a parent has to do from time to time, no matter how painful. I am sure it is just as hard on the doctors who have to make these tough decisions and I honestly don’t know how some of them do it. One thing for sure is that having a competent team that looks out for you is so imperative; I have been so fortunate to have such caring and compassionate doctors who are concerned with helping me to survive this disease! The doctors on my medical teams are truly among the elite and pretty much the best doctors in the country, in my opinion. All I can say is that God put the right people, in the right place and at the right time, specifically for me.

So in this case, NO ACTION is the best course of action after all! As I reflect on this, I have been reminded once again of the following quote, which there is so much truth to.

 

Scott Stuart2

 

This principle was taught to me by my very good friend, Rob Bohning, who recently lost his very lengthy battle with thyroid cancer. He lived this very principle as he did not let a bad set of circumstances drive him down; instead he used it for good to help others in their path by showing others that you do beat this disease by how you live your life and the example you set. What I can do to pay it forward to honor him and what he taught me is to follow his shining example to uplift, inspire and encourage others in their journey. It doesn’t matter if you are just starting this cancer journey or have been at it for a while, you will come to appreciate the importance of having someone you can lean on for support, those who have and are walking this same road and can share with you their experiences and insight on what they have learned along the way. Moreover, you have to continue to move on and drive on with your life even when circumstances in this journey try to drive you down, because as Rob told me many times that “you have cancer it does not have you.”

I want to end this post with the following quote:

 

Get back up

 

Sometimes it takes getting knocked down a few times to stand taller than you ever have . For me the choice is very clear to “ALWAYS GET BACK UP and FIGHT ON!”

 

Knowledge is Power!

I was fortunate enough to attend the Thyroid Cancer Survivor’s Association’s annual conference which is in its 17th year that was held on 17-19 October in Denver, CO. What a truly amazing experience and something which any thyroid cancer survivor can benefit from attending at least once. It’s not only the information gained about this disease, but those connections with other people who are facing similar circumstances. It was great being able to actually talk and meet those in person whom I have been communicating in the online support forums with.  I just love meeting new people and hearing their stories of where they have been in their journey; we really do learn from one another.

For the very first year after my diagnosis I really felt like I was up a creek without a paddle. I had no idea of how to steer my way through this cancer diagnosis. The only support system I had was my immediate family who did their best to provide that assurance to me that I was going to be ok. However, it would have been a much easier journey had there been someone I could talk and relate to who knew what I was going through and experiencing. At the time of my diagnosis, I was going in between having to be rushed out of Japan back to the United States in order to get good medical care, being separated from my immediate family for many months and then returning back to Japan for only a short time as then our family was transferred back to the United States for my husband’s job just so that we could be near some good facilities for my follow-up care. After our move to Colorado, I was able to learn about the local support group which I found out about from a flyer which was in the endocrinology office. So I thought to myself, what the hell I might as well kill two birds with one stone. So after one of my medical appointments I decided to stay a bit longer in Denver in order to attend the support meeting. Was that ever a good decision as the support group has been such a lifeline for me. It has helped me to know what is and is not normal and the questions I need to be asking my doctors. More importantly they are truly a wonderful group of people that I now call my dear friends. I would have to say that the majority of what I have learned about this disease has come from support groups, both local and online. Our doctors simply don’t have the time to tell us everything we need to know about our disease and why we need to be our own advocate and educate ourselves.

With that being said the support groups have spoken very highly of attending this annual conference that the Thyroid Cancer Association has every year. This is a conference where they have experts from all over the country come and talk about various topics. It is at a different location every year and this year it fortunately was held in Denver, so I was able to attend. There is new information that is evolving all of the time as researchers find new ways of treating this disease. The conference was full of so many wonderful speakers  with doctors from all over the country from some of the top cancer centers such as MD Anderson, Memorial-Sloan Kettering, John Hopkins, Massachusetts General…….the list just goes on and on.

The topics which I was most interested in were other treatment options for those with advanced disease that have failed traditional treatments with radioactive iodine. I wanted to educate myself about the chemo drugs that are being used in clinical trials that have had success. This will be the next step for me when this watchful waiting approach will no longer hold for me. My medical team will have to determine whether surgery is still an option, but I do understand that it might not be feasible, because of where my cancer is still located. It could possibly be too risky, but that is a decision which my surgeon will have to assess, but something that we will do together. I am fully aware that my cancer will grow at some point in time; we may need to explore other options and I just want to be prepared for what lies ahead.  It was quite interesting to hear these doctors explain about the different chemo drugs that are successful, but they also explained in great detail the science in how they work in a language that was easily understandable. I was able to gain knowledge about the different mutations and what specific drugs are being used to target these mutations. In addition, I learned about a clinical trial that Memorial-Sloan Kettering is working on to reverse the effect so that those of us who are RAI refractory can then have the ability to take up the iodine so that type of therapy can then be utilized.

One amazing speaker Dr. Steven Sherman, chairman from an organization called ITOG (International Thyroid Oncology Group) talked about the group and what their mission and purpose is.  This is a collection of scientists, doctors and patient volunteers in which they focus on identifying new therapies for thyroid cancer and improving patient experiences. More information can be obtained at their website:

http://itog.org/

The Dinner/Auction was a very fun night. At the live auction someone had offered to do a dance on the table to get people involved by pulling out their pocketbook to raise funds for research and throughout the night over $35,000 was raised for thyroid cancer research. One of the great doctors was honored for his work and support of all thyroid cancer patients, Dr. Bryan Haugen, who is such an amazing man! In addition, there was dancing which was a total blast and I think was just a fun night where we could all relax a bit and not have to think about cancer, but just to have some good old fun!

Overall, there were more than 600 people from the US, Canada, and United Kingdom which attended the ThyCa conference this year and from what I hear it was the biggest attendance on record! So much information was gained at this conference, but the key message that I want to get across to people is to educate, educate, educate yourself about your medical conditions and be aware of your own body, so when you see those red flags come up that you need to take action, because for some it is just too late. What I think is the big take away here is that knowledge is a powerful tool that we can utilize and something which needs to be shared which is why I continue to share what I know about this disease. I came across this quote that I think is very fitting:

 

knowledge-is-power1

 

 

 

Top-Notch Medical Teams

Of the numerous amounts of people on my care teams, those which have had the greatest impact on me throughout my journey would have to be my wonderful surgeons. They have not only strived to heal my body physically, but have helped me in so many other ways. From the moment that I walked into Dr. Song’s office, he has shown such genuine concern for my well-being and progress and what he can do to help in the process. He has never wavered in ALWAYS, ALWAYS giving me the encouragement and support that I so desperately needed, especially during those times when things have just not been in my favor. He has consistently given me one-hundred and ten percent and beyond and I feel so privileged to have him as my doctor. I am very grateful to him for his persistence and patience. I believe it must have had to take a great deal of patience on his part when he was faced with the myriad of challenges in trying to find this cancer during my surgery. I can imagine that he must have been frustrated; however, I believe that he was persistent and did absolutely EVERYTHING in his power to find this blasted cancer! His tireless efforts are to be commended and I appreciate him more and more each day for all that he has done and continues to do for me.

In addition, my daughter has benefited from his expertise as well. She was having some thyroid issues of her own; we were not really happy with her current doctor and felt as though they were not taking a very proactive approach to this, especially with our family history. However, I knew bringing her to Dr. Song for a second opinion was the right choice. He has been very instrumental in helping us get to the bottom of what was really going on with her thyroid and has always consistently ensured that her condition is being continuously monitored very closely. He is one incredibly intelligent and wise man who never ceases to amaze me with his knowledge and talents!

Moreover, Dr. Bentz has always been such a positive influence on me and I can always count on him to lift me up. He has really taught me about always having a positive attitude even amid the circumstances and challenges that I have faced with this cancer. After all, attitude is everything, especially for a cancer survivor! The medical community has not only benefited from Dr. Bentz and his excellent surgical skills, but more importantly by his huge and caring heart. He really cares about his patients and it shows in the way in which he interacts with them. This is a doctor who takes his job seriously and shows such dedication to his patients and will do EVERYTHING he can to help you. Anyone who is fortunate enough to come in contact with him benefits a thousand times over, because of his knowledge and the compassion he demonstrates consistently for people, as he truly has a heart of gold. I am so thankful to have had him as my surgeon and I appreciate his continual advice and wisdom!

I really did hit the jackpot with these two impeccable surgeons as I know many people have not been so lucky and have had their surgeries not turn out so favorably. Having surgery in the neck area is very delicate and you need to have a skilled, experienced surgeon to ensure that you can have the best outcome possible. I am so fortunate and count my blessings every day to have had two of the best surgeons around.

What sets these two exemplary doctors apart from other doctors is that they never make you feel like you are just another number passing through the system. I have felt like that with some doctors and others I’ve talked with whose doctors just dismiss them as though they are not important and just push them out the door. With these doctors you immediately feel like you are being treated as though you were a family member, rather than some random stranger because of the great concern and care they show towards you and make you feel as though you do matter.

I want to give these doctors the recognition that they are so deserving of; they are truly gifted doctors that use their God-given talents and abilities to the fullest extent possible in helping and providing hope to others. They are the epitome of what it means to show compassion for people and are making their mark on the world. I thank them both for being the phenomenal doctors and unique individuals that they are; truly they are a rare breed and we need more doctors like them in our healthcare system. I really respect and admire what they have to do on a continual basis, day in and day out; they are men of great integrity and character and I feel so fortunate to have them on my side.

Both of these exceptional docs have been such an integral part of my journey and have played such a key role in my outcome. Words just cannot express the gratitude that I have for these two wonderful men, who have taught me much. One of the most important and lasting things that I have learned from them both is that there is ALWAYS hope which has truly been the guiding force that has seen me through this whole ordeal. They have always encouraged me to NEVER give up no matter how bad my situation has seemed and that I can and will conquer this! Encouragement goes a long way and sometimes what helps you the most to get through whatever challenge you are facing. Medicine is so much more than just the physical healing of the human body, and for me it has been the support and encouragement that these doctors have provided which has meant the world to me. You treasure those who mean the most to you and these two outstanding docs are definitely at the top of my list. To me they are my heroes as they have saved my life and have helped me in many more ways than they even realize; I would not have made it through this journey without either one of them!

I have had the BEST medical teams available to me and they are some of the most impeccable professionals I have been so fortunate to know. These amazing doctors and nurses on my care teams have helped me to understand and recognize that I need to be in constant fighting mode and that giving up is simply NOT an option, even though it would have been the easy thing to do. This has helped me to realize that my life is definitely something worth fighting for and I will do whatever it takes to kick this cancer to the curb! I will say that all of those on my care teams have played such a vital role in my journey and I consider myself extremely lucky to have so many people looking out for me.

Evaluation and Reflection

As I think about it, I was just not understanding this whole wait and watch approach to my situation. However, I truly appreciate Dr. Bentz for opening my eyes and getting me to see the bigger picture. He has helped me to see the inherent risk that could happen if they tried going back in now and the damage that could happen to my laryngeal nerve, as a result. Although Dr. Song has told me the same thing several times, I guess it just never quite sunk in my head and I needed someone else to keep driving that point home to me. I just didn’t really like the answers I was given and was hoping for a different solution.

What I appreciate most about Dr. Bentz is that he has always been totally upfront with me, never sugar coating anything – he holds nothing back and tells it like it is no matter how ugly the truth can be. He always seems to know what I need to hear whether it be good or bad, and has had this ability in getting me to see things that others just haven’t been able to, but not because they haven’t tried. Some people just have that knack or skill to help you to see what should be obvious and a no-brainer, but we somehow need that extra push to get that light to turn on and wake us up. Dr. Bentz has given me such a fresh perspective which has helped me to take a step back and reframe how I look at things.

Prior to consulting back with Dr. Bentz is when I think that I hit my lowest point in this journey where I felt such despair as there was no easy answers to my situation. It was almost like I was being pulled into this deep, dark pit and could never reach to the top no matter how hard I tried. It felt as though I was stuck between a rock and a hard place. Do I play this waiting game and hope that the cancer does not grow and spread further, or do I push my docs to get this nasty cancer out and cause potential major injuries which could present many more challenges for me? Nevertheless, I am grateful to Dr. Bentz helping me to understand that I need to trust in these decisions being made; it really was in my best interest to watch this cancerous nodule for further growth, because the option of surgery just presented too many risks. I’ve also had many good friends encouraging me to trust in my docs decisions as well. Maybe there is a light at the end of the tunnel after all.

I believe one of the hardest concepts for a cancer patient to grasp is the waiting and the unknown; at least it has been for me. You are in this holding pattern as doctors just don’t know what the behavior of these cancer cells are and what they are going to do as they seem to have a mind of their own and can be so unpredictable. Docs can only make the best estimated guess on what the right protocols are; they make the best decisions they can based on standards, trends and through their own experience and that of their colleagues, by trial and error. I have gained a much better understanding and appreciation for doctors and the decisions they have to make, even when those choices can be difficult. I now realize that the waiting and unknown is just the nature of the beast and it has taught me about having patience, one concept that has been a challenge for me in this journey. I’m usually a fairly patient person with other people, but when it comes to things for myself I want things when I want it on my timetable and this journey has taught me that it just doesn’t work that way.

Cardiac Evaluation

The PCP then sent me to a cardiologist due to an abnormality they found on my EKG. The cardiologist was a Korean doctor, but he had a southern accent which is something that I just was not expecting. He was pretty funny and kept joking with me and I think we spent half the time talking about living in Japan. I was sent for a cardiac stress test which initially didn’t reveal any distinct problems. However, I had been tracking my heart rate which was showing a pattern of being quite high, so he had me do a 30-day heart event monitor. The cardiologist explained that because of the high suppressive dose of my thyroid meds that most likely he was going to place me on a beta blocker in an effort to get my heart rate down to a decent level. That was an interesting thing, I had electrodes placed on my chest and was connected to this monitor and had to press it when I had symptoms from heart palpitations to high/low readings of my heart rate. I was so glad to get those electrodes off my skin, it was so raw and I ended up having my PCP give me a steroid ointment to clear up the rash that it caused.

About mid-way through I was having many fluctuations with my heart rate going from very high to very low. My resting heart rate reached the level of 150 beats per minute, which was just not normal and during exercise it reached up to 250 beats per minute and was not calming down, way past the maximum even for a really trained athlete! The cardiologist finally put me on the beta blocker, which helped tremendously. Going through that really scared the hell out of me! It truly felt like my heart was going to leap out of my damn chest.

During this time, I was in constant email contact with the endo and was able to get them to lower my Levoxyl dosage. I understand the need to be kept suppressed, especially with me having a current metastatic nodule still inside me and at very high risk for cancer spread; however, at the same time I needed to be able to function. I was overly suppressed as my TSH levels reached to near zero and with all of the heart issues as well, they were able to lower my dose. Now, I am doing so much better since the dose reduction and the addition of the beta blocker. It is just amazing to me the effects that the thyroid has on the body and how much it controls everything!

Post-op

About a week after surgery was the post-op visit to remove the stitches and I saw one of the residents for that and it was about a week later on Jan 3, 2012 that I followed up with Dr. Song. He explained that all that was found on the pathology was nothing but scar tissue; he felt that it was lying on top of the laryngeal nerve under very extensive scar tissue, as he had explained to me while I was in the hospital. So now the plan is to rescan me again two months to see what that shows. I really have to commend Dr. Song as he did a remarkable job using the original incision for the second neck dissection. The current scar is much smaller than the original scar and now you can hardly even tell. I must admit that I have some pretty talented surgeons!

One major downside is that he has restricted me to only light cardio for two weeks. Are you freaking kidding me? I was able to go back to the gym much sooner the last time when I had the first surgery. I really don’t like it when people mess with my gym time/activity, my family knows all too well just how unpleasant I can be when that happens! He says that it is for my own protection, to prevent any internal bleeding from occurring. I guess I will go along with it even though I am NOT happy about it! Really, what choice do I have? However, I don’t need any more complications. When someone is used to running nearly every day and then you have to suddenly stop running that is a hard pill to swallow, it was like telling me not to breathe. The next two weeks watching others run was really hard and I wanted to run so badly I could just taste it. When I finally was able to run, that felt so awesome, like the best run I’ve ever had and now it feels good to be back in the game!

Surgery & Complications

UCH 1-2

 

 

 

 

 

I had the neck dissection on Dec 19, 2011 at the University of Colorado hospital, but little did I know of the problems which were about to surface. I went in and right at the start of the surgery they encountered very extensive scar tissue. They scrapped all the area on the left side removing all the lymph nodes under ultrasonic guidance. All the frozen sections showed nothing but scar tissue. They could not find the little bugger! Dr. Song felt that it was lying on top of the laryngeal nerve embedded under extensive scar tissue. He peeled back all the scar tissue that he could, but he just could not get to it without causing injury to my left recurrent laryngeal nerve, which would create a whole other list of problems for me.

Dr. Song left the OR to talk with my husband and explained the situation and said that the only way to get complete clearance was to take the nerve. So after discussing this for some time with Dr. Song, the decision was finally made to leave the nerve intact and abort the rest of the procedure, as the nerve was still functioning. It was devastating to me to learn that they were unable to contain the nodule. They were in there more than five hours trying to find this stupid thing!

When I had woke up from surgery, I had trouble with my left eye as it kept drooping downward and it was a struggle just to keep it open which has been a continuing ongoing problem. Another issue occurred shortly following surgery. I remembered feeling very light-headed and sweating and then thought to myself, well dummy you just had major surgery of course you are not feeling in the best shape! However, there was I reason I was feeling that way. Somehow going from the OR up to the room they had me in, my IV was not connected correctly, or had become disconnected and so there I lay with blood leaking from my IV. There was blood everywhere and I was soaked from top to bottom. Being that I just had surgery they could not move me too much, especially around my neck area. The nurses had to do it very meticulously moving me only one side at a time removing my gown, removing the sheets and so on. I don’t think that I have seen so much blood in all my life!

I saw the head endocrinologist, Dr. Bryan Haugen who came in along with Dr. Song and many of his residents. Dr. Song was examining my eye and said that it should be temporary and I believe that he called it Horner’s syndrome. Why did this have to happen, why couldn’t Dr. Song find this blasted thing? I almost wished he would have just taken the damn nerve; at least this cancer would be out of me! I only had one drain in place being it was only on the left side and that was removed before I left the hospital on December 21, 2011. I was glad to be home in time before Christmas.