It is now July of 2013 and time for testing once again. Every time I come up on follow-up testing I always worry and wonder are they going to find something more, is the tumor marker going to rise? It is a hold your breath and wait for it……wait for it…..moment which feels like it has no end. You go in and get the tests and then have to wait for the results. I think that is the most nerve wracking part of it all being kept in limbo not knowing whether it is good or bad. The fortunate thing is that with the hospital system at UCH you have automatic access to your medical records so you can see the lab results online and don’t have to wait for the phone call from your doc. Best invention ever designed with the patient in mind. The result for the lab work is fairly quick; however, results from ultrasounds and scans takes a bit longer. I am so fortunate to have such wonderful docs that are on top of everything and usually call me fairly quickly with my scan results so I don’t wait too long.
The results are in – absolutely no growth of my existing nodule! The nodule has stayed the same exact size since the last ultrasound. Yeah for me! So I am celebrating and doing the happy dance! How I would long to hear those words cancer free, but I really don’t think that will ever happen in my lifetime; I’m not even sure that it’s possible, because with thyroid cancer the likelihood of recurrences are so high. However, I am really grateful for those stable results; stable is good given the other alternative of it taking a nose dive and having the increased risk of more cancer cells growing and multiplying.
My TSH level is slightly above where I really need to be to keep those cancer cells from waking up and so we are going to try and raise the dose of Synthroid on a trial basis and hope that it doesn’t push my heart rate back into overdrive again. Time will tell how my body will react and I’m hoping that all will be well and that I don’t have side effects from the dose increase. Currently, my Tg marker has gone up from 0.4 to 0.5 which is not a significant rise and seems to be holding steady. However, if my Tg does rise significantly and there is an increase in the nodule size, Dr. Song tells me we’ll need to have a serious discussion on attempting to go back in to find this blasted cancer, which would mean another surgery. That is a conversation I really don’t want to have and hope that we never have to come to that point EVER!
Come January 2013, I had another ultrasound which shows no further growth and so now I am celebrating that and doing the happy dance! About a week after the ultrasound I saw Dr. Song again and he said that he has high hopes that it does not develop into anything more. He did bring up something quite interesting in which he had a patient who had a recurrence happen thirty years later. That just goes to show that this monster can recur at any given moment and is why we need to be very vigilant as it can sneak up on you when you least expect it!
I have watched a recent Webinar that was presented on thyroid surgery and re-surgeries and the ensuing complications that can result to the laryngeal nerves. I was able to really understand the effects that can take place when those nerves are injured. I have also talked with others cancer survivors who have had similar experiences and the lasting effects it has had on their life. Now, I think it truly has sunk in my head what Dr. Song has been telling me over and over and how going back in now would be doing more harm than good! As far as I am concerned he can keep his scalpel as far, far away from me as possible. Keep it tucked away, hidden in a drawer for a long time to come, or better yet he could lose that scalpel permanently! Dr. Song has done the best thing he could possibly do for me by telling me NO – that surgery was not the answer in my situation, even though at times it was hard for me to understand that. Much like a parent disciplines their children for their own good as I have done with my own children many times. The decisions that he has made has been for my own good and now I can really see why and I am so grateful to him for that!
I also followed up with my most amazing endo, whom I absolutely love! It is nice when you are on the same page as your doctors and you don’t have to fight to get what you want as I know many people have struggled in finding the right doctor that really listens to them. That has never been an issue for me at all and I am so fortunate to be at a top-notch facility that is on the forefront of cancer treatment. The great news is that I will only need to be followed with just ultrasound and Tg testing, so no more whole body scans! That is a celebration in itself as I really hate those whole body scans! Hopefully, my TSH can stay suppressed at a level that will keep the cancer at bay and the next testing will be in July. I am coming up on my two-year mark since my TT. It has been an interesting two years and I hope that one day I can be in that category of a long-term survivor.
I came back to see the Endocrinologist on November 2, 2011; the endocrinologists that I saw were Dr. Greg Lund which is a fellow to Dr. Michael McDermott. They went over my entire history reviewing everything in great detail and I spent nearly an hour talking with them about my case. I really like these doctors and I am very impressed with them as they are very thorough. Although my TSH levels are not exactly where they want me to be at I am slowly, but surely getting there; however, they are going to increase my dosage and then I will follow-up with them in about three months. I came back a week later on November 8, 2011 to have the ultrasound and to also see the sinus specialist, Dr. Todd Kingdom and he was really phenomenal as well. He ordered for me to have a sinus CT scan which I had done a week later.
Even while still in the hotel, I made arrangements to set up care with primary doctors and the specialists that Dr. Bentz had referred me to. They were located at the University of Colorado Hospital in Aurora, CO. It was October 26, 2011, I remember doing the drive to Denver and it was snowing already. I ended up parking in the wrong place and found myself on the University Medical School campus as the GPS had directed me wrong.
Finally, I found where I was supposed to be and I remember thinking, wow this is a big university hospital! The patient parking was a nightmare trying to find a spot, so then I finally went and used the free valet parking service. The receptionists and nurses seemed very friendly and I felt at ease. I brought all my medical records with me, which is practically a novel in itself along with copies of all my scans that I had done. At first I was seen by the resident doctors who reviewed all my history and finally Dr. Song came into the room. I was quite impressed with this doctor and I feel very lucky to be at such top-notch facility with such an incredible doc. It is ironic that his last name is Song and since my TT I haven’t been able to carry a tune too well, nothing at all like I used to. Since having the RAI, I really had not had any follow-up scans so he ordered lab tests and an ultrasound. Dr. Song also referred me to the endocrinologists who were in the same location of the hospital.