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.
Wednesday, May 14, 2014
As some of you know, my mom has fallen ill with Stage 4 Colon Cancer. She is a lunch lady that was working at minimum wage to keep a roof over her head after the Real Estate market crash left her with next to nothing on a house she paid on for over 30 years (which was supposed to have been her "compensatory payment" from her husband that left her for another woman after the children were "grown".)
As some of you know, Mom has been "shafted" by her Medicare plan underwritten by United Healthcare, because "as of January 1st, 2014, United Healthcare has refused to renew Medicare contracts with Moffitt and Sloan-Kettering" along with many other key players in the war against cancer.
Now for the latest: Mom cannot return to her job as a food service worker because of her brand new iliostomy AND she is NOT eligible for disability (despite being a working woman at minimum wage) because she is past the "magic" number of 66. (She is 69.)
AND...she is not allowed to have her social security bumped because, according to the Social Security Administration of America: "That only happens if you are collecting NO social security or minimal social security. (See: drug abusers, woman that can't hold their legs together after 13 children fathered by 13 different fathers, and illegal immigrants granted "amnesty") . Apparently, she is "rolling in the dough" making $735.00 a month which she is now supposed to live on.
Just a REAL TIME, REAL LIFE update on the current "State of Affairs".
Friday, May 9, 2014
Apparently, by bringing you this very real information, I pissed off the "powers that be". So I bring it to you again...typed out long hand....
Next post on "Chardash" is still coming. I am wrapping my brain around what I am being told to keep my mom alive.
Here is what I have been told, so far, by Moffitt Cancer Center in Tampa:
"As of January 1st, this year (2014), Medicare Plans funded by United Healthcare are no longer considered "In-network". IF your plan ALLOWS for "Out-of network" coverage, please be advised the "out-of-pocket" costs will reflect accordingly. (As in, affordable by Rockefeller.) We also do NOT do surgery on patients with metasticized cancer. (Funny, because they did full-on with a pancreatic cancer patient I treat that lost half of his inner-organs prior to 2014.) Sorry for the inconvenience."
Sloan-Kettering in New York ALSO now states online that United Healthcare funded Medicare Plans are NOW considered "Out-of-network".
If you are on Medicare, check your plans, folks.
P.S. - The person suffering Dementia I was referring to in the intro to "Chardash" is NOT my mom, rather a 94-year-old grandmother that we are caring for while my mom fights for her life. Please make a note of it. And please know, this may very well be your story someday, too.
Here is what I've been told so far by Moffitt Cancer Center in Tampa: "As of January 1st this year, Medicare Plans funded by United Healthcare are no longer considered "in-network". IF your plan ALLOWS for out of network coverage, please be advised the out-of pocket costs will reflect accordingly. (As in, affordable by Rockefeller.) We also do not do surgery on patients with metaticized cancer. Sorry for the inconvenience."
Sloan-Kettering in New York ALSO states online that United Healthcare funded Medicare plans are NOW considered "out-of-network."
If you are on Medicare, check your plans, folks.
P.S. - The person suffering Dementia I was referring to in "Chardash" is NOT my mom, rather a 94 year-old grandmother that we are caring for while mom fights for her life. Please make a note of it.
Wednesday, May 7, 2014
- A Chronicle of Cancer, Senility and Illness
(and all Western Medicine Had To Say About It)
|Image brought to you by WikiCommons, Artist: Laslo Varga|
Hello. Some people who are familiar with my posts may wonder why I have fallen off the face of the planet for awhile now. In the next few weeks, months, and hopefully...years, I will be sharing with you the full story. It is beautiful and poignant, tragic and heart-wrenching, but most of all, true.
The names and places will have to be changed for legal reasons, (although in some cases I do not understand why. I feel some should burn publicly for what they have done.) Nevertheless, may these pieces be a source of information and inspiration for dealing with the good, bad and ugly of cancer, dealing with a failing, aged family member, and navigating the nefarious, thorn-stuffed labyrinth of the our modern medical system.
First about the title chosen:
"Chardash" is the phoenetic way of saying "czardas", also spelled "Csardas"
According to the Encyclopedia Brittanica, Hungarian Csárdás is the national dance of Hungary. It is a "courting dance for couples, it begins with a slow section (lassu), followed by an exhilarating fast section (friss). The individual dancers carry themselves proudly and improvise on a simple fundamental step, their feet snapping inward and outward, the couples whirling. The music, often played by a Gypsy orchestra, is in 2/4 or 4/4 time with compelling, syncopated rhythms." In honor of my family, may the up and coming excerpts for "Chardash" teach you the steps and rhythms.
Bright Blessings to you all. :) More to Come.
P.S. - The person fighting cancer is NOT the same person suffering from dementia. Please be advised.