Sunday, November 2, 2014
Saturday, June 7, 2014
...and the dominoes continue to fall.
Please be advised, that just like the United Health Care fiasco sweeping the nation, Humana refused to renew contracts with Florida Cancer Specialists, and not the other way around. Brought to you by your very own eye witness.
How would you feel if you were undergoing cancer "treatment" and your health insurance provider suddenly "denied access"? Hint: Might be closer than you think.
Throughout the summer of 2013, I was bounced from one test to another by my "primary care" physician. Finally in August, I called my dad who lives North of me in Florida to ask who he sees for his Endocrinology needs.
"I'm sorry, honey. I had no idea. You need to tell me about these things.....and YES! You MUST go see my doctor! He is world-renowned and has a GREAT reputation. Let me give you his number. Tell him I sent you."
"Um, okay dad. I will."
From the research I did, he was a very long-established endocrinologist in the area with a great following. Unfortunately, the age and demographics were not disclosed in this research, but I did not know anybody down here in SW Florida well enough to personally ask. Dad was still alive, so I gave it a go.
The doctor I was greeted with at my first appointment was very, very old. It was evident he was trying to appear "younger" by the very thin, combed-over, dyed "do" in an awful shade of bronze-brown. He stiffly waddled into the room like a hunched-over character from South park. He went to take a look in my ears and eyes, like every old-time doc I remember. The power for the contraption was unplugged. Took us both a minute to figure out the problem, but I saw the dangling cord and fixed it to get this thing over with.
Now, don't get me wrong. I have a very deep respect for our elders. I would not know half the stuff I do now, or have been challenged to learn MORE by their encouragement. But this...just made me uneasy. Call it intuition, fate to spring-board to a higher understanding...whatever. This did not feel right.
He later concluded that he thinks I definitely "have an enlarged portion of my thyroid", "need to get that checked out", "might have some hormone imbalances" and proceeded to write a long list of tests from ANOTHER Ultra-sound to labs to a pituitary MRI that I had to schedule, in tandem, "before I saw him next." With my schedule (I actually WORK), and the way medical offices schedule things down here with all the elderly retirees in Florida, I was sincerely concerned this man would be dead "before I saw him next."
"Just do what he says!" my father scolded me after expressing my concerns. Ugh. So I did.
After the battery of tests I was prescribed to do: a.) my NEW (3rd) Ultrasound indicated I now had 4 nodules in my Thyroid remnant, my brain MRI to check my pituitary was "inconclusive" (because of clerical error in the orders, I later discovered) and my labs were "relatively normal". I then got the lecture about how I seemed to be a "very stressed-out lady" from this "renowned endocrinologist".
"Um, pardon me, sir...but with all things considered, DO YOU BLAME ME???"
"No, no, no sweetheart. It's perfectly understandable. You are getting to that age when "things" can start changing."
"I'm 45. Nothing has changed "that way." I am having the same troubles I had 10 years ago when I had my thyroid operation, but the heart palps are getting worse. And my dad, who had pituitary issues, started having them about the same age I am now. He's YOUR patient. BUT, you told me the MRI was "inconclusive because it wasn't ordered "properly"."
The radiology firm that did the MRI confirmed with me by visual proof that: a.) IF a scan of the pituitary was mandated, a completely DIFFERENT set of sequences would have been done, AND b.) the orders given by the assigning doctor's front office did NOT indicate this was the order. After mentioning this to the doctor, I was told that he had a "specialist" who would be able to review the scans that WERE done and give a conclusive reading. This made NO sense to me, but just documented it as I had been doing all along. (Imagine my "surprise" when the mentioned "specialist" concluded a few weeks later that the $1,000 botched test I was paying for in deductible showed "normal" results. No further observation notes were available.)
"Well, the good news is, judging from your lab work, I think I may be able to help you."
My cynical brow framed my piercing glare.
"I think you need to have your progestrone level raised. Your levels were very low. It should help balance you out, and reduce your anxiety, too. It comes in a creme. It is made by a local pharmacy here from real USP sources which circumvents the risks posed by synthetic progesterone sources."
I also took this opportunity to ask about a brown splotch on my nose, and a brown line that had prominently appeared on my left thumb-nail in the past month. Upon examination, I was also written a referral to see a dermatologist he knows.
I closed my eyes. I already knew how to get USP grade progesterone cream. Researched it. Never needed it. As my anger started to quietly smolder, I considered that perhaps this old codger knew something I didn't. It was supposed to last 3 months into 2014. We didn't get that far.
More to come.
Thursday, May 29, 2014
In the tail-end of January going into February, 2013, my mom fell very ill for the first time. This started her own bout with colon cancer. My mom is of the stubborn kind. Suddenly, my battle seemed irrelevant. It was a dire, kidneys-shutting-down kind of event that left her on her back until spring. I gulped down every supplement I knew of to keep me "on-line" to keep her going. (Surprisingly, it worked fairly well. But the heart palps and exhaustion were just reduced to mild episodes that I usually could get through by heavy breathing and sleep. There still was something wrong, as my husband started grumbling, "You shed more than the dog!!!" Oh well. Get over it, Big Boy.)
Mom got back on her feet in late spring of 2013. (That is another ordeal I will be sharing in "Chardash".) I took the reprieve as a signal to get myself checked. I re-scheduled my Echocardiogram with the Heart people, but went to see Lifeline Screening, first. I did not like all the bull-shit bills I was getting for all the heart tests that were run previously, that were "inconclusive". Lifeline did me good before. I was giving them another whirl. And...voila. They did it again.
Three weeks later my Lifeline results came in. My vascular pathways were clear. As an "incidental finding", they found a 4 mm growth in my remaining stub of a thyroid. Hmmm. The previous radiologist I was sent to by the doc handling my case said it was clear and normal. Interesting. I presented this to the handling physician. She still insisted to follow-up with the echo, and shrugged her shoulders at the rest. Awesome.
See, you can't just NOT do what a tending physician says to do in the big world of health insurance. Second opinions are one thing. The down-side of second opinions, however, is that you are basically starting from scratch...which means MORE money, and MORE tests. A health-insurance paying citizen in America today cannot completly REFUSE testing and treatment by your own discretion. IF something comes up that is related to what you have already established a paper trail for, it is considered "Negligence" on your part for not jumping through all the medical "hoops" placed before you by a tending physician. Not "fair"; not "right"; but this is the "new" regime of health-care in America. So I went to the Echo.
Not surprisingly, they found my heart to be doing an acrobatic act called "PVC's", or Premature Ventricular Contractions. At least I got to see the thing in action. Basically what happens is the bottom part of the heart beats out of time with the top part of the heart. The reasons for this include, but are not limited to, CHEMICAL IMBALANCES IN THE BODY. Go figure.
The top part of the heart is "boss". If the bottom loses time, it is FORCED to beat again to keep time with the whole unit. (People that have trouble with the top part of their hearts are considered high risk for other complications because the whole chain gets thrown off when it mis-fires, hence the term A-fib.)
When the bottom part starts having timing issues, it is not considered "medically relevant" and normally, "just a nuisance or annoyance" to many within the western medical community. (This might change if we could give them all chronic PVC's for extended periods of time. Maybe then, they might see it's not just a "nuisance". I feel that way about a lot of doctors, these days. If you cannot feel, you cannot treat. But that's just me.)
In the follow-up with the cardiologist, she prescribed Metoprolol to help "ease the symptoms of PVC's" until I could get to the bottom of the cause with my "other health providers". Took it for two weeks as prescribed. Not only did the PVC's not stop, I found myself feeling randomly disoriented and nauseated. The last time was when I was driving to work. That was the last time I took Metoprolol. I later found out this drug was recalled TWO times for reasons "not disclosed".
More to come.
The doctor I was assigned to (after leaving the ER with heart palpitations and blood pressure spikes) took all the same blood panels they took in the ER. I told her that my levels have never been normal, explaining my history, again.
"We need a base-line to go off of now that you are out of the ER."
Upon the follow-up visit, I was told my thyroid levels were actually "low", and she increased my current Synthroid dosage. (I only have a good 2.5 cm left of the thyroid I was born with. I wasn't surprised. It still bothered me, however, that the ER lab had said all was well.)
"I understand that low levels can cause hair loss, brain "fog", and feeling exhausted, but what about the heart palps?"
"It is possible for hypo (low) and hyper (high) symptoms to occur at the same time when levels are off. Let's try the new dose and see how you do."
I hoped she was right, but the heart pounding loudly in my ears and waking me up at night was more extreme than the last bout I had gone through 10 years ago. True, I was 10 years older and could expect some differences with general age, but this stuff was scaring the heck out me, no less.
I waited. As of January 2013, the hair was still clogging the drain, my heart was still randomly skipping beats all over the place, and my face started breaking out while the rest of me was as dry as the Sahara. Despite living in the balmy Southwest portion of Florida, I also found myself shivering cold. It was not uncommon to see me walking about with a heavy sweatshirt and wool hat...even in the grocery store. It was horrible though, because once I finally bundled up enough to where I was warm, the heart would start pounding like mad. Adding the ongoing cycles of sleep-disturbance from this whole ordeal, I sincerely began to feel I was going insane.
The assigned physician said that it could be early menopause, but she would order an ultra-sound of my thyroid to confirm. After more testing, and money, the results came back from her radiologist saying they saw no growths or anomalies in the thyroid. The doctor then suggested I go see a cardiac specialist, and contacted a local cardiac group to look at me. Grrrrreat. More money. Off to the cardiologists I went. After another useless EKG that showed nothing, and wearing a holster to report all "events" for a month, I was ordered to have an echocardiogram. (Translation: they didn't know what was wrong from what they got.)
Meanwhile, Life-Line Screening sent me a "friendly reminder" that it had been awhile since they last saw me.
I decided to go. Once again, thank goodness I did.
More to come.
Tuesday, May 27, 2014
After going into Life-Line Screening, they found a 1 cm growth in the right lobe of my thyroid as an "incidental finding" that should be followed up with a physician for. (Told you they rock.) After returning to my physicians office and presenting them with the findings and pictures, I was directed to a local hospital for a "skinny needle aspiration" where a thin needle punctures the growth and draws out cells to check for malignancy.
The results came back after a few days. I was told that the biopsy of the cells drawn showed a 98.9 percent chance of being malignant. They said they wanted to schedule me for surgery to remove my thyroid. Being the question-monger I am (and knowing a little bit about human physiology), I fearfully asked what that meant in the grand scheme of things. My fears were confirmed.
The acting doctor responded, "Well, you will have to be on a drug called Synthroid for the rest of your life to take the place of the missing gland."
"And if I don't?"
"Well...you can't really survive without a thyroid, without the acting hormones replaced, as it governs your heart, adrenals and a host of other intricate functions. That's what Synthroid, or Levothyroxine, is for."
"But the growth is only in one part of my thyroid. Why can't you just cut it out and leave the rest alone? Glands and some organs are known to grow back when severed over time."
"Well, with the threat of cancer, it is always a good idea to remove the total gland. Our medicine has allowed many people to live rich and productive lives without much trouble but an occasional blood panel to check your levels."
"And what if I can't get this 'miraculous' drug in the future? You basically are telling me that if pharmacies ever become unavailable I am doomed to die because of this."
"Well, the possibilities of this ever happening are virtually non-existant. You'll be fiiiiiiine." She patted my shoulder reassuringly.
It didn't help. It sincerely bothered me that I was being told I would have to rely upon a pharmacy for the rest of my life to stay alive. It also bugged the crap out of me that the fact something "wrong" with me was poo-pooed away by some doctors hiding behind "lab results" saying my levels were "normal". This "normal" status was created by some un-seen power that determines what those "levels" should be for everyone.
Going into your physician and saying "Doc, there is something wrong with me," no longer holds water because of "averages" and a giant "bell curve" with statistics from some unseen source. No offense to the statisticians and research compilers that created this new "reality", but I have been in my body my whole life. I know when something is not right.
The last thing that bothered me, was that my father had a pituitary tumor several years prior that messed with his entire being for ages until his eyelid and face finally collapsed sounding the alarm bells. His tumor "infarcted" while undergoing treatment. He eventually had the tumor remnants removed and went on to live a relatively normal life. He was older than me when this happened, however. Bringing up the pituitary history with this current set of doctors was brow-beaten. On to the 2nd opinion.
Couldn't get in to Froedtert Hospital for this issue until 2 months later. Since thyroid cancer is normally one of the "happy" cancers you want to get because it grows so slow, I opted to wait. I did get to see an endocrinologist there, though. He did an MRI of my head and showed me that I have an anomaly in the shape of my pituitary, but this wasn't supported to mean anything by the panels drawn. (Mine is shaped like a small acorn, where most look like kidney beans that hang from a stalk.)
In the next 2 months I underwent a complete soul house-cleaning. I had several rounds of Reiki with a dear, and recently departed friend. I could feel a buzzing and warmth throughout my body as she effortlessly but deep focus placed her energy on my body. She was truly amazing.
I followed up with a two week hiatus in a cottage on the farmlands of Madison, Wisconsin. I worked through Moving Mediatations and impromptu hikes through the field and surrounding woods. The air was warm and sweet. The nights were damp and musky. I do not think I have ever slept so soundly in all my life. Then it came time to return for the second opinion at Froedtert.
I was told that they would try and save at least a part of my Thyroid if possible. The plan was to remove the lobe with the large growth and biopsy it while I was still on the table to determine if it was cancer. If it was malignant, they were obliged to take the whole thing for safety purposes. If it was benign, they would remove the growth and leave me with a functional part. After the surgery, the growth miraculously was benign, and I was left with a little over one third of a functioning thyroid. I still had to take synthroid for years to come to keep my levels straight, but I survived with at least a semblance of my own self to fight another day.
I lived like this for 10 years without much incident. Then November rolled around in 2012. My hair started coming out in clumps after a shower again. Soon after, the heart palpitations began. I wound up in the ER after work one day as it felt like I was about to have a heart attack. My BP had spiked to 152 systolic, but came down gradually back to 110 over a couple hours. I had an average day with no deep stressors or emotions. There was no reason for any of it. The blood work showed "normal". I explained my past experience and family history to an assigned doctor. Here we go again, except this time...so much worse. One would think after 10 years of "medical breakthroughs", this type of thing would get easier to diagnose and treat. Oh, how wrong I was. Let the maze begin.
More to come.
Hi all. For those who are wondering, Mom has had some great news contrary to the former prognosis from her VERY former doctor that she only has 60 days to live. It is still going to be a long battle as she is going to have to undergo chemo to try and get the tumors on her colon to back off, but her spirit is bright, her body is strong and she is already making plans for going back to work in fall. I will give you ALL the details in the upcoming tale of "Chardash". We have had many hours of solitude travelling back and forth out of town for her treatments, waiting areas, chemo treatment and just chilling together at her house while I make her comfy. :)
Meanwhile, I have been battling a problem of my own that NEEDS to be spoken about. (I couldn't make this stuff up if I tried.)
Ten years ago, I started feeling very strange, like I was walking in a fog. My heart would intermittently race and feel like it was pounding to get out of my chest. Nothing I did ever set these episodes off. I could be working, playing with my young daughter, reading, watching TV or even sleeping. My face also started to break out while the rest of my skin stayed painfully dry. I was having a hard time focusing on anything, and slept every chance I could get because I was totally exhausted.
My garden and work-outs went to hell, and it took every ounce of energy to pull myself out of bed to go to work. The only thing that gave me solace was my young daughter cajoling me into playing, coloring, reading stories and watching endless loops of Zooboomafu, Animal Documentaries, Disney Films and Powder Puff Girls. (She snuggled right into me and spent many a night snoring with me on the couch.)
The heart thing and brain "fog" was starting to scare the heck out of me. I went to see the doctor. After blood panels were done, they assured me they were within "normal levels" and it was probably "hormonal" and "stress-related." Feeling dejected, I went about my work and young motherhood desperately trying to focus. I could get past the feeling of being sick and tired. The thing that would not let me ignore it was the heart palpitations. I worried constantly about keeling over while driving or sitting at home with my daughter. What if I died? What would she do????
I got a flyer in the mail one day for Life-line Screening, which is a low cost way to check the health of your heart, arteries and veins, and a host of other things that could lead to a heart-attack or stroke, which is what I felt like I was having at the worst "episodes". I gave it a try. Thank goodness I did.
More to come.