One bit of information...can make a huge difference. It's like a missing puzzle piece that suddenly opens up a whole new world of thinking.
I was telling someone the other day that now I feel free. I feel free to enjoy the holidays without a pending oncology situation. I feel free to breathe in the full experience of promoting to Director and all that this celebration entails. I feel free to live in God's grace and take pleasure in loving my hubby and my kids.
Here's the thing - I was free to do all those things the day BEFORE the Dr. called. What changed? My mind? My attitude? Just that one bit of information changed the entire world for me.
Here's what happened as best as I can understand it. I've had a few days to process it all and I've chosen to move past the anger and resentment for mis-information and mis treatment and focus on all those things that I mentioned above.
When I had my thyroid removed in 1984, the surgeon supposedly told my mother (I was a teenager at the time and wasn't really into my own health care) that it was 'cancer.' Now I wasn't at that conversation (I was in recovery) so I have no proof of what was-or was not said. It was 20+ years ago and I just don't know. I know what my moms says happened (as best as she remembers) and I know what treatment followed for 10+ years but that's it. I was referred to an endocrinologist who put me on the thyroid medicine to replace the hormones that the thyroid produces. He treated me for umpteen years and I was fine in that area.
When I began dating B (current hubby) and knew that I'd be moving to this area - I found a new endocrinologist. I signed the appropriate release forms for records from the former endocrinologist. I signed a second form a few months later after discovering that no records had been received. Here's where it gets a bit tricky and where I'm not totally clear on what should have been or could have been my responsibility and where the line crossed over to the responsibility of my medical caregiver. Much of this is now a pieced together puzzle of pieces gathered over a 7 year period and the main revealing pieces (you know the ones that give you the idea of what the entire picture is about?) being placed only in the last 10 days.
There were never any records or post operative reports sent or received. The endocrinologist that I've been seeing for the past 7 years was treating me for something that he "assumed" that I had and not what he confirmed with past medical records that I had. He went solely on my verbal communication of what little I knew about my health situation as it related to my thyroid surgery. There are several different types of thyroid cancer but he never had any confirmation of exactly what kind I had. He only made an assumption. For the past 7 years, I've been taking abnormally high amounts of medication to prevent the cancer that he assumed I had from returning. The medication levels kept growing and growing and growing. At some point (which point we don't know but we just know it happened sometime within the past year) my body reached a level of toxicity in the bloodstream/pancreas/liver with the medication. This toxicity presented itself in symptoms and blood levels that were acutely abnormal. All symptoms and labs pointed to a recurrence of the cancer and a probably metastasis.
The minor indicators - like weight gain, horrible problems with my period, migraine headaches, foot/leg pain and a prolonged cough were enough for me to seek further medical care. When the former endocrinologist blew me off and said, "Eat less and exercise more and take some drugs", I decided to find another Dr. She was thorough and very professional and while she did not criticize anything that the former endo did - I could tell that she was puzzled and disappointed.
All of the blood work that she ordered and continued to monitor indicated that there were serious problems with my health and that the cancer that the former endo had been treating me for had most likely returned. She (the new Dr) ordered more in depth testing and began asking questions and digging deeper. Each set of test revealed more questions and more worry. She was professional with me at all times but I really valued her honesty and her level of communication with me during the process. I felt like for the first time - I was partnered with a health professional that respected me as well as cared for my wellbeing (emotionally and physically).
If she had gone only on the most current test results - I'd probably be biopsied to hell and back by now and have unnecessary medical bills over $100 thousand. Instead, she refused to go forward until she saw the original pathology report from the surgery in 1984. The reason that the endocrinologist from the 80's didn't send a pathology report is because he didn't have one. He did have a medical chart full of 10+ years of office visits and labs. He didn't send those. No one can answer why the 3 request for medical records over a 14 month period were ignored. They claim they never received any request but yet the office has record and verification of all 3 request being received. Anyhow....
After a lot of song and dance and some threats to the VP of Patient Services at the hospital over 350 miles away - the pathology reports were delivered to my newest endocrinologist.
Want to know some scary shit?
There was never any thyroid cancer.
Not in 1984. Not in 1990 (when I had the remainder of my thyroid supposedly removed.)
I've been being treated for the past 23 years for something that I never had. Specifically, for the past 7 years I've been putting abnormally high amounts of medication in my body and my body just finally said, "that's enough!" The organs and other glands started boycotting the intrusion. Symptoms started appearing and flags started waving.
You can't prevent from returning what you never had in the first damn place.
I needed a few days to wrap my head around all the facts and the image that those puzzle pieces were revealing. It was only one small piece of information but it yielded such a huge amount of impact. To go from thinking that my body was being eaten alive by one of the worst forms of thyroid cancer that had most likely metastasized to 4-6 other parts of my body was mind staggering. Then all of a sudden I was completely not in that place.
"But if I don't have cancer, why were those cancer markers so high?" I asked.
"Because you still have over 2/3 of your thyroid gland. Apparently, the thyroid gland (which has 4 lobes) was never completely removed even during both surgeries and as was reported to you. That level is produced by people who still have part or all of their gland and according to the information that you received - your entire gland had been removed. You should not have had any detectable amount of that hormone in your blood. Now that we know you still have most of your gland - we understand why the level is what it is."
How could I have misunderstood the surgeon when he told me that he removed EVERY BIT OF RESIDUAL THYROID TISSUE? I good and damn well know that is what he told me in 1990 when the 2nd occurrence of nodules were discovered and removed. Now we know it just wasn't so.
See what I mean about the missing puzzle pieces and how they reveal a picture TOTALLY different than one which you are expecting? I got a much better picture than the one revealed on the outside of the box.
For now - I'm on a lower dose of medication. I'm also on an antidepressant to help with some of the other symptoms. She will monitor the levels for the next 6 months and see what happens. There is probably some permanent damage to the pancreas but to what degree we do not presently know. It may repair. It may not. But I do NOT have cancer, praise God!
Lesson learned? We can no longer depend on a medical person to be solely responsible for our health care. We must ask questions. We must investigate and educate. We must insist on copies of labs/pathology reports and build our OWN medical file. We must insist that information be shared with us in a way that WE can understand and we must never take the hunches that we have for granted. We must also not take the word of a doctor as gospel just because of the letters after that name. We must find a caregiver who works WITH us and who we feel respects us. Perhaps most of all in this I have learned that our perceptions and interpretations of events is not always factual and FACTS is what we have to deal with when it comes to our health.
In hindsight and initially - I was pissed to have been taken on this jerky roller coaster ride of worry and insomnia and horrible physical problems. I'm MORE relieved that I am not terminally ill. Others are not so fortunate to be able to say that. I have many things to be thankful for - one is a Dr who refused to stop digging until all the dots were connected and she was dealing with the facts. I appreciate that.
I also appreciate those of you who prayed and send words and hugs of encouragement. Those initiations and gestures were such a source of strength for me and my family during the shadowy days that preceded this revelation of facts and the main picture of the puzzle. Thank you, sincerely.
It almost seems surreal when I look back on it. One thing's for sure - I'm happy to be on this side of the situation and I'm beyond happy to be viewing the ENTIRE picture of the puzzle.