My family has moved across the country twice in the last year for my husband's career and that has made living with HCC more challenging. I wanted to keep my doctors 1800 miles away and I managed to do just that. I have done very well with the Thyroid Suppression (aka maintenance) over the last decade. My doctor actually is thrilled that I didn't switch care providers and that likely has contributed to my success. In fact, this second move in a year has put me back closer to them again (the trip still being a good days drive). It's funny, the sorts of looks I get when I tell people in the office I just flew in for a regular appointment. And when asked why, I say if it's not broke don't fix it.
Simply put, I had the option for other oncologists (Cancer Center's of America Phoenix and Cleveland Clinic - both within an hour of my new homes); yet, I had that gut feeling to stay true to what was working at UK's Markey Cancer Center. My doctor has monitored my progress carefully and I have followed the regiment strictly. WOW, I am coming up on 10 years with NED (No Evidence of Disease) and not many people can say that. I like to think God's plan is to use me as an example of the defying the impossible. I wonder if I will live to be as old as my grand parents who all made it 80+.
Don't get me wrong, I have had my share of minor issues. The RAI treatment caused my tear ducts closed and my salivary glands to stop working. The tightness in my jaw from the surgeries still causes clinching, so much so, that my bite guard (worn at night) actually broke one night! I have seen multiple myofascial oral pain folks and physical therapists for simply losing my voice due to that tension in my neck. I have even been to the ER for a blocked wind pipe. I was unable to breathe because my vocal cords were paralyzed and I thank God that the doctor's scope quickly fixed it.
The surgeries and RAI did remove all HCC and for that I am grateful; but it also has me focused on things that I took for granted. Treatment has definitely challenged me more on my oral care than I would have anticipated. Over time I have found Evoxac several times a day forces my saliva glands to function better to avoid the pitfalls of a dry mouth and Prevident 5000 is the best toothpaste to remove any decay caused by RAI. Biotene and Sensodyne work well; but they don't treat the root cause or the pain.
The most important thing I have learned is really sticking to a schedule despite the pain. My routine has been disrupted countless times in the last year plus and by God's grace I have managed to overcome those challenges. I have now moved 27 times and built 4 houses in 43 years. I can say adapting to change is a constant for me. Since my Army years, I have dealt with painful walking/running. With my physical disability and this cancer, I am limited; still I make no excuses for pushing thru those pains. In fact, I actually tolerate pain too well, as I found out last Fall when a bruise just wouldn't heal.
I am not an advocate of pain pills; because, I don't agree with drugging or covering up the real symptoms. Unfortunately, massage and physical therapy are expensive and can only help so much. Sometimes you need a good picture to tell you the truth. It turns out that thyroid suppression medicine speeds up bone deficiencies. My doctor had reduced my Levoxyl to as low as we could go and still keep me suppressed; but, that didn't prevent the issue of aging faster with this treatment. At this point, my bone density has suffered. I now have osteopenia from the many years of hormone replacement therapy. Fortunately, I am now take a calcium supplement to slow the bone loss.
Some might say I am a mess, but I can say without a doubt that I am HERE despite a rare deadly disease. I am thriving by continuing to learn and teach people about my experiences. I have been graced by God with more wisdom and knowledge that I never would have sought without HCC. I pick myself up every time something knocks me down. I start over when plans change. I am living according to God's plan for as long as I am able because I am willing to do it.
Today, I was able to chat with an old friend about my experience. I pray that she has better biopsy results are better than mine were. I hope that God will grace her with the peace of knowing she will be blessed beyond measure with her faith and trust in His merciful hands. This journey is worth the fight!
Today, I was able to chat with an old friend about my experience. I pray that she has better biopsy results are better than mine were. I hope that God will grace her with the peace of knowing she will be blessed beyond measure with her faith and trust in His merciful hands. This journey is worth the fight!
