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!”

 

Here we go again!!

It is very true that anything can change on a dime. I thought I would be in the clear for the next six months at least that is what I kept hoping for. However, those hopes came crashing down when I was told that the appearance of my nodule on my laryngeal nerve they have been following the last three years was starting to change in ways which were not good. The nodule started showing changes with more and more increased calcification, which is pretty much just a fancy word they use to mean suspected malignancy. I knew before I had the recent neck ultrasound that deep down in my gut something was just not right and trying with all my might to brush those bad feelings aside, but it was a nagging feeling that just wasn’t going away. I knew the day would come I would be treading these waters once again, but was just hoping it would happen much later down the road.

So, here it is the month of January which is when my initial diagnosis took place four years ago. Makes me wonder if this could this mean a bad omen that history is starting to repeat itself once again? We have been dancing around this for the past three years watching and waiting to see what this suspicious nodule was going to do. With these changes on the ultrasound, my surgeon, Dr. Song felt that we needed to take action and repeat the FNA to determine if the cells were positive for malignancy and if so, we would discuss making another attempt at trying to remove this nodule for good. On 29 January I was in the Ultrasound Department at University of Colorado Hospital once again prepping for biopsy #3. Since my husband couldn’t be with me during the biopsy, because he is on deployment, I had my youngest daughter with me for moral support. My husband and I have traveled this road before in which we have been separated oceans apart and you’d think I would be used to this as we’ve done it before; however, it is difficult nonetheless. It has been so challenging the last few weeks knowing what is in front of me and not having my biggest supporter around me. However, the most positive thing is that my better half and best friend will be back from his deployment by the end of this day which makes me one very happy girl! So when you talk of peaks and valleys of your day, for me most definitely the return of my husband is my peak, whereas my valley is having this biopsy.

I am so fortunate to have the same doctor who performed the last biopsy; in fact I actually requested her specifically. It was Dr. Kristen McKinney, who is an interventional radiologist who is truly fantastic and really knows what she is doing.  Just like the last one it is done using ultrasonic guidance so that they can pinpoint the location of the nodule accurately in order to withdraw out the suspected cells. So then, the million dollar question of the day is going to be whether or not the cells are positive for malignancy. I just have to cross my fingers and say a prayer that it is not, but I know that it could be a real possibility.

So they prepped my neck with that ugly brown betadine to sterilize the field. Here it goes again with the first stab where they inject the numbing medicine to ease the pain.  Then the next needle goes in directing at the targeted area. The radiologist goes back and forth to draw out the cells in the nodule and I feel a lot of pressure like someone sitting right on top of my windpipe. So then I just try to breathe my way through it, the best I can. She does 1, 2 and then 3 passes to get adequate tissue placed on the slides for pathology. Dr. McKinney asked me before she left the room if I wanted to know the results to which I replied a resounding yes! So all the medical personnel leave the room and we wait…and wait… and wait. Then when Dr. McKinney returns and I see that look on her face, I know immediately….it is POSITIVE. She said there was no question that it was very clear cut that it was PTC (papillary thyroid cancer).

So now we know for sure that there is still remaining cancer in my body that I have lived with the last 4 years and now I have to prepare myself to discuss this hot mess with Dr. Song and the rest of my medical team on how we move forward. That is going to be the most dreaded conversation I have ever had with Dr. Song, but these decisions will be something that we will do together as a collective team and hope that we can come up with a solution that we can all live with.

Some very wise words of wisdom that I would like to share from Scott Stuart, a longtime Sportscaster who unfortunately lost his cancer battle, I believe the truth of this statement says it all in how we fight this foe:

 

Scott Stuart wisdom

 

 

Simply put, there are no guarantees in life and what I have learned is that you just have to keep rolling with the punches, to which this cancer has surely given me a fair share of! No matter what keeps coming my way I have to remain positive and push forward as I CANNOT LET CANCER WIN!!!

Reaction

Wow, did I ever speak too soon with the increase of the Synthroid! It is now six weeks later and my levels are way too high; no wonder I have started feeling so horrible! I can’t seem to get my levels right. One dose is too low and another is way too high. It makes me wonder if I will be one of those patients that can never get their levels right – this can be so frustrating! Moreover, I am just grateful that I have an endo who doesn’t just look at numbers, but also takes into consideration into how I feel; since we switched to the Synthroid I just have not felt well and have had many different issues – I have had the fatigue again, a lot of joint and muscle pain and major brain fog. So now we are going to try a different brand by using Tirosint. I have talked with many people who have had positive results and feel so much better, being that they had to switch from Levoxyl as well. The thing with Tirosint is that it is pure gel form and doesn’t contain any filler’s which I think is a major problem for some people as they don’t respond well to it and have many issues because of it. I really love the fact of how open my endo is to new ideas and doing those things that will be of benefit to me and helping me to have a better quality of life.

More Issues

At about the same time I was having issues again with my eye drooping again and also started having eye twitching of my bottom lid on my left eye which occurred very frequently, what seemed to be about every two minutes. I emailed Dr. Song about it and so they had my PCP check my calcium, Vitamin D and parathyroid levels which were all normal. Although my calcium level was borderline low, a few days later I know that it dropped even further as I started having numbness and cramping in my fingers and around my mouth, the same feeling I had right after surgery when my calcium had tanked. I remedied that with some Tums and really pushing in getting enough calcium back into my system. The eye twitching has been a continued problem and is unfortunately just a related nerve issue, just something else to annoy me! Dr. Song explained that the eye droop was just temporary and was due to the nerve being stretched during surgery, but should improve over time. He said that the fact that it comes and goes is an indicator that it is something which is temporary, because if it was there all the time that would be more of a permanent situation.

Additionally, it was time for my annual mammogram and they had to recall me back for further images. OMG, please don’t tell me I may now be dealing with the possibility of breast cancer! We have a history of breast cancer in our family. I have heard of people having both thyroid cancer and getting subsequent breast cancer or vice versa; I was hoping and praying that was not my situation as I always worry about getting secondary cancers, because of the radiation exposure. I think I have had just about enough of this cancer mess! Lucky for me, I went back for those repeat images and thank God all is good! Another bullet dodged!

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!

Complications

It was around this time that I started having some breathing issues and so I decided to set up an appointment with my PCP. They did some testing and eventually put me on an inhaler as I was wheezing and having shortness of breath during exercise and at other times, in addition I was also feeling a lot of major fatigue. I was having problems during my daily runs with feeling like I could not get enough air in and fatigue during my run, but it also occurred at varying times throughout the day as well. It has subsequently been discovered that it most likely is asthma related and that I will probably have continuing issues with this. In addition, because of the extreme fatigue I felt it was hard getting through the day as I just felt totally drained and completely exhausted. Then issues came with my heart as I was having major heart palpitations with a really high heart rate.