Ebb and Flow

I have no idea how many rounds of chemo I have endured. I’m sure I can research my medical records to find out. However, for all intents and purposes of this post, I am not going to do that. Just know that it has been over 3 years since I have been fighting with brute force and prayer to eradicate – or at least halt the progression of – this cancer.

Multiple Myeloma is a little know blood cancer overshadowed by the bigger names like Leukemia and Lymphoma. This rare blood cancer, sometimes also called Myeloma, has no known cause as of yet. However, it does higher propensities in those of African decent, older than 60 years of age, and effects males more than females. Now, if you haven’t seen my pic when I began this blog, I will let you know that I am Caucasian female that was diagnosed in my mid-30’s. I actually had my first known fracture when I was 35 years old. And if I really am being transparent, which I am, I noticed some early signs that I wrote about in my journal when I was just 33 years old.

Of all of the pain and destruction that this disease has put on my body, the worst one is the lessened mobility thus leading to the inability to work as a staff nurse at the hospitals. I absolutely loved working as a registered nurse on fast-paced, high acuity sections of the hospital. I was in my element when I had my patient’s information swirling in my head as I raced to see just how much I could get done and who else I could help. It was almost as if I were playing a real life virtual reality video game, and I was trying to beat my high score every day I was at work. It was thrilling, rewarding, and gave me drive and motivation.

The loss of ability, and therefore loss of employment, was an almost detrimental blow to my family as a unit, as well as my life. Because I was the bread winner, the bills landed on me, which I was happy to provide for. I was very much a control freak when it came to being ON-TIME with bill paying. I did not like to pay late fees when I barely had enough to pay the bill to begin with. My husband, on the other hand, was not so much into the details of paying. He’d rather someone handle all of that for him. AND if he knew how much we had all together, proverbially, it burned a hole in his pocket. So, on my days off, I paid the bills, which gave me a sense of satisfaction knowing that they were paid and that we weren’t “throwing money into the fire pit” by paying late fees and penalties.

Along with being a control freak about not having to pay bills late, I didn’t like being late at all for anything. My husband, however, is late for EVERYTHING. I do not say this in a mean or judgmental way. We all are different. He balances me out, and I balance him out. Needless to say, I took the fellas to doctor’s appointments and dental appointments. I made sure that they had their medications. I checked their homework. I filled out the school papers for enrolling the fellas and anything else that dealt with paperwork, including doing the taxes.

Now a little note on the taxes. I am very private about my finances because that is how I was raised. I was taught that one does not talk about their finances to anyone unless one was learning how to better utilize them, i.e. a class. However, my husband told anyone and everyone everything that crossed his mind. So I learned not to tell him about my financial income. I just told him how much I paid for the various bills so that he had an idea of how much money it takes to run the household. He was not interested in knowing these amounts at all, but I told him anyway. I would take the tax papers to a tax person – someone that we did not know and that had no say in our finances – to fill out the forms, and send them in for us in the hopes that we got back as much as we could while obeying the laws. My husband preferred to have someone he knew do them on a “free” online site that I didn’t find as secure as taking it to an actual person with an absolute guarantee and legal shield if indeed an error occurred.

Now, I say all that to really give you a picture of how different my husband and I were on various subjects that a husband and wife ultimately have to confront in any marriage. I am going to reiterate this, I am not putting this out there for judgment for me or my husband. Everyone is different in their approach to life in general including differing sections of life. So his way of approaching finances or time keeping may be different that mine, but it isn’t wrong. We both have a different way of getting things done, but the task itself gets done. I take on things that I feel are more efficient, and likewise, he does the same with other things in our lives.

Back to the strain on our marriage. My husband had to have a crash course in how to take over paying the bills. I had enough saved up that I could cover all of the bills for five months. So when I had surgery to close an non-healing fracture in my hip area, which began my descent into more pain and fractures than I could have possibly imagined, I still had enough to pay for the bills until what I was hoping would be a short healing period of time before going back to work.

Unbeknownst to us, that was not going to happen. The primary care physician I had was truly incompetent. There is absolutely no reason why she is a physician. She has a somewhat tolerable bedside manner, but I am a nurse so I know how to tolerate most physicians – almost all. The part that I didn’t know at the time, but that I obviously know a lot too late, is that she had no idea what she was reading when she was looking at blood work results that were outside of normal limits. She could sign off on medication prescriptions and be told what she was looking at, but she could not do it for herself and she was secretive of that knowledge. She didn’t even let me know what my lab results were and would state matter-of-factually that my problem was that I had a urinary tract infection, when at that specific time, I had a low platelet count, low potassium count, and acidic blood. I had lost 8 inches in height due to multiple fractures in my spine over the year and half of being under her “care”.

Two months before seeking out a different primary care physician, I had went into the hospital with a near lethal low potassium level that I have communicated about in a past post, so I will not rewrite it here. But, just know that I had had multiple upper respiratory infections that led to pneumonia, multiple non-healing sores that occurred on my body that were absolutely painful, and an insane amount of general skeletal pain. These ailments led to many questions that remained unanswered due to a lack of knowledge and/or care on the part of the primary care physician.

This physician sent me to a “pain” doctor, who essentially held the stance that I was “crying wolf” about the pain in my hips and back. The primary care physician clearly passed on misinformation about my actual ailments to the “pain” doctor. So, this “pain” doctor stated rather coldly that I should take ibuprofen and Tylenol intermittently while in pain. Of course, I’m pretty sure you know that mere Tylenol and ibuprofen do nothing to help calm the pain level of multiple fractures anywhere much more the spine. However, the primary care physician would not allow for another MRI since I had one when I first began to be in her “care”, even after multiple requests and possible reasons for requests introduced to her by me.

I was losing my sense of worth and identity. The depression was creeping on me like a giant, black, thick curtain that was closing me into a small closet of a mental room with no light, muffling my voice to the outside world. No one could hear me. No one would hear me. I was out of sight out of mind to anyone that could help me. So, after I cam out of the hospital a month and a half before I began to see a new doctor, I was taking large potassium pills, and I got an upper respiratory infection that led to me nearly not able to breath efficiently. So even though I was absolutely scared to see this “physician” that had done nothing to help me in a real sense, I knew that if I came to her with something this absolutely clearly is an upper respiratory tract infection that could easily be identified as pneumonia that any first year resident could diagnose, she would give me a prescription of an antibiotic to ward off the illness for a little bit until I see a real doctor. And I was right.

The last time I saw this person dressed up as a doctor was a month before I met with my current primary care physician who, after seeing my information, immediately began the change of events effectively saving my life. This real physician met me for the first time with a list of things that I could be suffering from that included what I have. She was prepared for our appointment, which is something I had not experienced since my time as a obgyn patient.

After a few short days, I was being poked, examined, and screened. Then off to an Endocrinologist to address the very abnormal blood work values. The Endocrinologist diagnosed me with a very rare disease of “Fanconi’s Syndrome”. This is an awful ailment having to do with the kidneys. In this syndrome, the kidneys push out much needed – actually necessary – elements from the blood as if they were garbage. This is rare, but it’s usually due to Multiple Myeloma gone unchecked wrecking havoc on the rest of the body. My sister did a simple google search on “Fanconi’s Syndrome” and found that information out. So she technically knew before me or anyone outside of my medical team including the “pretend” doctor I had before my current primary care physician. This was the cause of all of the fractures.

So to recap, the fractures were a result of the Fanconi’s Syndrome, and the Fanconi’s Syndrome was a result of the blood cancer, specifically Multiple Myeloma. And the detrimental near fatal effects both physically and mentally were as a result of the ignorance and arrogance of my first adult primary care physician. I can only imagine how many people have gone in disrepair and despair at the hands of this merciless villain in my life history. I really do wonder sometimes how many people could be saved as a result of simply changing their care from the hands of this over-paid “professional, medical” lay person pretending to know what to do for them.

The thoughts like these run through my head for the 6 hour chemo appointment once every month. I try to distract from it each time by crocheting, reading the Bible, reading a book, knitting, praying, or even taking a nap. The strong urge to push down the anxiety and depression that comes with these thoughts is instinctive now, but in the beginning, I had so much to be thankful for and so much to learn, that I didn’t have time to process the feelings.

In addition to learning how to combat this cancer, I had to learn to pick up the pieces of my life as a whole in the wake of the devastation. I had to put back together my relationships. I had to get my body stronger so that I could walk unassisted again. I had to learn what each medication and supplement I now took was used for. I had to learn how to teach my family and friends lessons on blood cancer and the human body multiple times over. And mostly, I had to learn how to accept this and move on without holding on to the past.

I’m pretty sure I just made you do a double take on that last sentence. Yes. I said that I had to let go. I do understand most of this post is about an un-named grudge I have on an un-named person in my medical history that I don’t seem to have let go. However, let me just say this and possibly win you over to my side of this occurrence.

She nearly ripped from my children from their Mom; nearly ripped from my husband “the best thing that ever happened to him”; nearly obliterated any sense of trust in the health care system as a whole; nearly devastated my Mom (who let’s be honest was a little “touched” to begin with); nearly metaphorically disemboweled my sister, my best friend, my confidant, my home girl, my….person; nearly broke my mother-in-low; nearly “drove” my father to the nutty-nut farm herself; and nearly brought more tragedy to my family than they were about to experience a year and a half after I got out of the hospital while under her “watchful” (literally looking most anywhere but me).

Candace Bond, “Ebb and Flow”, http://www.coffeewithcandee.com

I have forgiven her, by only Yehoveh’s, God’s, grace and strength, of this egregious act of apathy or selfishness, whichever, that she did to me and my friends&family. There is absolutely no reason for me to forget what happened as I have learned to always trust my instinct, God’s Spirit, instructing me and guiding me. Forgive is commanded; Forget is inexcusable ignorance in a real sense of Webster’s definition for it. That is the conclusion I have come to. Every thought is linked to an amount of information prior to it.

Coming back to the beginning, I am going to reiterate that Today was yet another day of going over the worst thoughts in my life.

Gotta go fill up my cup…..

Published by Coffee With Candee

I am married and I have four sons that are my whole world. I have a relationship with God through Jesus. Oh, and I have a blood cancer that has no known cure as of yet called Multiple Myeloma. Go Coffee!!!

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