Currently, there is a hue and cry, far and wide, regarding opioid use and its connection to high numbers of opioid overdoses.
While this concern has several very valid issues and statistics, it does not honestly address the entire picture. As it now stands, pharmacies and physicians are extremely reluctant and/or afraid to prescribe any opioid meds. It has become a question of “liability vs the patients’s needs” which has overridden past practices of approving opioid prescriptions; even to excess.
As it stands nowadays, due to the public outcry and the resultant fear entrenching pharmacies and physicians, many patients are not getting the proper dose of opioids to address their pain management needs.
So, many persons, taking the dose of opioids prescribed by their physicians, could not overdose due to the fact that the medical professionals are restricted in the quantity and dose of opioids they can prescribe; and in many cases, the patient is not receiving enough pain meds to address their chronic pain. The only way a person could OD on opiates, these days, would be to not take their prescribed opiate drugs, but to hoard them and at such time as they deemed fit, make a conscious decision to “OD” ending in death or a near-death incident.
The other way an individual could OD would be to obtain their opiate drugs illegally; on the streets, stealing from a family member’s opiate prescription, buying from an unscrupulous physician, purchasing from a drug dealer, etc. They may also seek out other means to alleviate their pain, “self-medicating,” and in so doing, “accidentally OD” as is allegedly the case with many celebrities as well as the regular public.
Case in Point:
This is in response to a survey I received via email about my experience at the pharmacy. It concerns a prescription ordered by my oncologist on 12-26-19.
I had an appointment with my oncologist on 12-26-19, and she asked how I was doing, and asked the usual questions: How have I been feeling? Am I having any chills or hot flashes? How am I sleeping? Am I having any pain, etc. I explained I have a great deal of trouble sleeping, in large part due to the pain. That I take a Norco before I go to bed, and another when I wake up in pain, so I can sleep longer. I told her I get 28 a month, leaving me with 2 or 3 days a month with no Norco. I told her I must use a cane, as needed, due to the pain. That I’m unable to do the things I used to do because of the pain in my joints – knees, hips, shoulders, hands, wrists. I told her I also take ibuprofen and naproxen throughout the day and night because the meds I get do not handle the pain.
(I also have pain associated with my diagnoses of: Fibromyalgia, chronic pain syndrome, Sjogren’s, degenerative lumbar disc condition, and HypoParathyroidism.)
She then prescribed a Fentanyl patch, at the lowest dose and said several of her patients are using the Fentanyl patch and that it works well to alleviate pain, not just for sleeping, but throughout the day and night. She said she’d order it for pick-up at the nearest pharmacy.
I went to the pharmacy on 12-27-19 to pick it up. I was made to wait, then directed to see the pharmacist. The pharmacist stated she could not approve the prescription. She said she called my oncologist and told her about how she refused to approve it. My oncologist then had to cancel the prescription order.
The pharmacist told me I was not taking enough Norco, and not at a high enough dose to justify the fentanyl patch. She further commented that my body would not tolerate the patch, that I would literally die if I used it at this time. She suggested I contact my primary doctor and request that he up my Norco dose from the 5/325 to the 10/325 dose. She also offered to contact my primary doctor herself and make that request.
I told my oncologist, via the messaging system through the insurance company online, and she said I would have to try a higher dose of Norco, then try morphine, before I could get the Fentanyl patch. (In my records, since starting with my insurance company, I have told all my doctors that I get extremely violent with morphine, that I have severe hallucinations, and I get very nauseated on morphine; therefore, cannot take it.)
Well, I don’t know if the female pharmacist contacted my primary physician or not, so I messaged him through their online system. He told me as my primary care physician, he could not prescribe Norco at a higher dose, and suggested I discuss with my oncologist about my increased pain medications concern.
I did as he suggested, and left her a message through the insurance company’s online system. I have not received a response.
I am confounded. It defies all logic that I must take more opioids, at a higher dose, before I can get more/and other opioids I am guessing no one wants to be liable, in light of the public outcry about opioids. So, is it liability versus patient’s needs?
I am at a loss as to what to do now. It seems no one is willing to address this; and I am on my own regarding the issue of the pain I deal with 24/7.
I am extremely happy, satisfied and have a deep respect for my oncologist! And I am content with my primary physician; but in this regard, I feel I’ve been set aside, with no intention to address the problem further.
FRUSTRATED BEYOND REASON!
(The entire “problem” with opioid prescription and use, needs to be re-evaluated to include the varying needs and situations of ALL the effected patients; including those who are left with no other legal option to address their pain. It should not be so… Too bad the pharmaceutical business cannot or will not develop a pain medication that is not an opioid, but eases the pain as effectively.)
Entry Fifty Five June 29, 2018 The reality of my situation is a nightmare, coiling around inside of me, ready to strike, The new world I live in is a tough one to share. I try so hard to maintain normal on the outside, while my insides are a roiling core of denial, Some days […]
Entry Fifty Five
June 29, 2018
The reality of my situation is a nightmare,
coiling around inside of me, ready to strike,
The new world I live in is a tough one to share.
I try so hard to maintain normal on the outside,
while my insides are a roiling core of denial,
Some days it is so very hard to manage it; to hide.
There are times when my day feels like old times,
I can enjoy the normal everyday things I once did,
then out of nowhere, that snake chooses to strike.
I can sleep and do many things to get away from it all:
video games, musical instruments, artwork, or reading,
but sooner than later, that serpent bites and crashing, I fall.
There are no longer “What ifs?” or “Why Can’t I?”
Really, they are not applicable, and never will be now.
There’s only “How to?” “Why do?” and “How will I?”
The world is my jail; I am an unwanted life form,
people shy away from me, afraid they might catch it,
that disease that makes me terminal; that stole my norm.
Those in the medical community often refuse to treat us,
because someday we have a definite termination date.
What hypocrisy, the hippocratic oath; to fail us, just because.
My oncologist assures me I might, under her treatment plan, live many years,
she has patients who have done that with the same treatment regime.
Hearing this is a bandage I don’t want to remove, as underneath lie all my fears.
Now, knowing what the future holds: What shall I do with my day?
Should I stop everything, go out and make a name for myself?
Or continue living the same life I feel at ease with, come what may?
What will become of my furry family members after I am gone?
They are the breath I breathe, the drumbeat of my heart, my soul.
Leaving them behind, the “not knowing” is too scary to think upon.
Will I have paid off all my bills; taken care of things that need doing before?
I know the house will not be paid off, it is new; our lovely forever home.
I don’t know how long I have; what date in the future? How near? How far?
Who will pass before me; those to my heart I closely enfold.
And who shall carry on, their normal lives – the world unchanged?
It is odd and troubling, wondering, what a future beyond me holds.
Entry Fifty Six
July 25, 2018
Well, I have had the necessary blood tests, my pre-op exam with the heart specialist. and follow-up with the surgeon, and everything looks great for moving forward to have the septoplasty with turbinate reduction. YAY! I know what day (July 31, 2018) just not the time, yet.
The heart (pre-op) doctor did say I have a heart murmur, but I’ve been told by various physicians through the years that they, too, noted a slight murmur. I’m not overly worried about that because I figure if that were to adversely effect my surgery, the doctors would have addressed the issue before, when I’ve had multiple surgeries in years pasts.
I don’t know what other MBC patients do to stave off the darkness, the demons and ghosts that may haunt them day and night, especially at night, but I do have a few things I can turn to that occupy my mind and/or my hands and help. During the day, weather permitting, I do yard work, ride my 3-wheeled bike (I have terrible balance and as a result, suffered a rib-breaking accident the first day I bought a very nice, regular bicycle), yoga with my friend, walk my dog, go shopping, go to the movies, and so on. At night, I play musical instruments, I do adult coloring books, I read, I watch shows I’ve recorded on TV, I write.
I’m going to post some of the pieces I’ve done from the adult coloring books. I’ve used colored pencils, but doing so really aggravated my carpal tunnel syndrome, so I switched to gel pens, which are much more forgiving on my carpal tunnel syndrome. And recently, I started using colored markers, which are even easier on the hands and wrists. I ordered some watercolor brush pens, but am too intimidated by them to given them a go just yet.
Here are a few done mostly with markers…
I hope you enjoy them – they are a great escape for me and I am pleased afterward, with what I’ve done. Looking at them brings a smile to my face!
Entry Fifty Seven
July 25, 2018
The Dentist Visit(s)
I came back today to tell you I had to have a crown done on July 10th; on a back molar that was badly cracked and, also, the fillings were loose. That tooth has bothered me for years and I’ve been unable to chew anything hard or sticky on it. I haven’t chewed gum in many years because of that tooth. Every time I would give gum a go, it felt like it was going to pull those fillings right out.
So, the dentist and I decided a crown was necessary, before that tooth broke apart, causing more severe problems.
Now, what was really neat and interesting was my dentist bought the same machine the lab has to make a crown. So, I didn’t have to get a temporary crown. I watched as my crown was etched out of a super hard substance (10 times stronger and harder than any crown I have had in the past) using two different drill type arms; one a diamond tip and I don’t recall if they said what the other tip was made of. It was quite fascinating to be able to see it fashioned before my eyes and in a relatively short period of time. The entire visit usually lasts 2 hours. Mine was a little longer, by 15 minutes. But I went home with my new, super strong crown already in place. And it fits perfectly.
The downside, for everyone who has ever needed a crown was the cost… As insurance covers about half, that left me with a $528 bill. Yowzer!
Later, when I tried using my night guard; an upper, full coverage occlusal splint, I discovered it no longer fit. I called the office and went in on the 12th to have it worked on, so I could wear it.
The splint is needed because I clench and grind (bruxism) my teeth, leaving fine cracks in most, if not all my teeth, and I grind down my enamel. In addition, it exacerbates my Temporomandibular Joint Dysfunction – TMJ. The night guard/splint looks like this…
On the way home, I tried it on and it was rocking back and forth on my teeth, loose – and to boot, I could pop it off with my tongue. (The night guard fits on my upper teeth and it should be level feeling and I should be tight enough that I cannot pop it off with my tongue.) I called the office from my car, but it was too late to go back and have the dentist try to readjust it again, so they gave me an appointment for the 19th.
On the 19th, the dentist worked diligently to make the proper adjustments, but it still did not fit on my teeth as it should. He continued working on it, behind me, as I sat and waited. Shortly thereafter, I heard a crack and a low groan from the dentist. I, too, groaned, rubbing my face in despair. Insurance does not pay for these splints. I was looking at upwards of $600+ to replace it.
The dentist came around, apologized, and said he would only charge me his actual cost for the new splint – just what he will pay for it. Whatchya gonna do?
So, they took plates and filled them with that goo they use to get the shape of the splint, put them in my mouth to set, then sent the works off to the lab. The receptionist scheduled an appointment for me to go in on August 16th to get the new splint tuned up to fit perfectly.
The dentist did save a part of my old splint and it fits good enough to be used nightly. The part of the splint that allowed me to pop it off and caused it to rock back and forth on my teeth was gone. I suppose I could have stuck with that piece to use every night, but I have a top molar with no corresponding tooth beneath it, which puts that tooth in danger of moving downward and that splint helps keep that tooth in place; something to that affect. According to Wikipedia: “Partial coverage splints are recommended by some experts, but they have the potential to cause unwanted tooth movements, which can occasionally be severe.” It would be severe in my case…
Though I brush my splint every morning with liquid antibacterial soap, then leave it soaking all day in Polident or Efferdent, it still has turned an amber-brownish hue, especially near the front. I’ve had that splint for many years and it has served me well. Hoping to get a new one that will serve me just as well!
Entry Fifty Eight
October 4, 2018
Should I Continue This Blog?
Well, it’s been a while since I posted, due, in part, to the thought I have that perhaps not that many people are reading it. That, and, each time I come to this blog it is with reticence and a sense of cathartic release; a yin and yang principle. So, it is difficult to talk about what is scaring me, while at the same time, it is a positive release. The two war with one another and lately, the scary part has been winning out. So, that said, I will do this entry, but I am uncertain whether I will continue. Perhaps, I will clock in intermittently. I just don’t know. I’m not feeling energized about making this a steady contribution.
To catch up… On July 31st, I had the Septoplasty and Turbinate Reduction surgery. It was done as an out-patient procedure. To summarize the recovery in a few words; it was a quick surgery and an ass-kicking recovery. Worse than I could even have imagined. And, I am still healing. It will likely be some time before I recover and begin enjoying the most positive results expected. However, I am already able to breathe better than prior to the surgery! YAY! What a difference it makes and a blessing. I will spare you all the gross, disgusting, painful, creepy-cruddy things I’m dealing with through this healing process. Suffice it to say, recovery can be big-time yucky!
Moving on… On September 13th, I had my third PETScan. The results showed no advancement of the cancer, however, no reduction in tumor size, either. So, I am happy the cancer has not moved elsewhere and it has not grown, but I’m depressed that after all these months on the two cancer meds, there has been no reduction in the tumors’ sizes. My oncologist had indicated before the PETScan, that there should be tumor reduction after about 8 to 9 months of being on Ibrance.
In my follow-up appointment with her, she advised me she is going to change my meds. I will be going from Ibrance to Kisqal. This could be a positive thing. But from the start; right after diagnosis – she advised me I have three drugs available to me to fight the cancer (each used in conjunction with the Faslodex). After using these three drugs, the cancer has free rein, unless a drug is created and approved before my use of the three drugs runs out. Scary! She did say I could go back to using Ibrance, at a later date, if I choose. Somewhat reassuring.
The alarming thing is – the clicking clock. I lose survival time, I’m guessing, when I go from one drug to another. After I run out of all three, the cancer is on its own, and I am out of options.
Now, during my office visit with her she gave me a handout describing the drug I will begin taking next month. When reading the handout, I slowly became concerned, confused, and questions began floating in my chemo-induced, hazy brain. I read where the trial results show higher survival rates and higher tumor reduction rates with Kisqal and Letrozole, as opposed to Kisqal and Faslodex – which I will be taking. I’ve been getting Faslodex shots all along. So, I went back into the office to speak with her about it and she pretty much told me I was reading it wrong and then hurried off to see another patient.
I sat in the outer office for 45 minutes total, reading that handout over and over. I am not wrong. I emailed her before leaving the office and I have not heard back from her. This concerns me. I realize she should know best, however, there is no denying what I was reading. She has never mentioned Letrozole to me. Oh well! All I can do is hope for the best! And that I will hear back from her with a reasonable explanation.
In the interim, about a week after surgery, I took my mother to see Willie Nelson in concert, with Alison Krauss; a belated Mother’s Day gift. She enjoyed it tremendously, as did I.
A week after that, my spouse and I went to see Peter Frampton in concert. He was fantastic! It was a fun concert. I hadn’t seen him since my teens or early 20’s. I’d seen Willie Nelson a few times through the years, and he has always been stellar! Peter Frampton may not look the same (who does, really?) but his playing is every bit as great as it was, back-in-the-day. And he is much more engaging and down-to-earth; really pulling the audience into his show. He was enjoying it as much as the audience was.
Also, in September, we went camping at the beach for a weekend. We usually have weekend vacations to go camping at the lake, the beach and Yosemite, but we haven’t been to the beach or Yosemite for at least a couple of years.
A few days before we left, my Chihuahua noticed we were preparing for a trip. She knows what this means. In the past, I have taken her with us, but she hated it, so I board her now, instead. She began to pick at her meals and not finish them. Totally unlike her normal voracious appetite. She started acting withdrawn and depressed.
When we were camping, I called the boarding place to see how everyone was doing. The young woman there told me my little Chihuahua was not eating as she should have been. When I picked her up, her malaise was even more pronounced as was her lack of appetite.
A few days later, I discovered she had had a bloody stool. I immediately took her to Emergency at two of the night-time Emergency Hospitals in town, as our vet’s office had closed. She was prescribed four medicines and a bland diet. She had irritable colitis. They also did blood tests and ran a test on that bloody stool I took in.
I found out later she had picked up a parasite and required additional meds for that. She could only have picked that up where she was boarded, as she has been nowhere else but at home. None of the other dogs had become ill, thankfully.
The next time we plan a short vacation, the vet will prescribe a Flortiflora (probiotic) and a sedative to ease her through. I also plan to board her directly at the vet’s clinic, instead of at the boarding place. as I feel she will have a better chance to stay well there. I will still take the other dogs to the boarding place. I have boarded my furry family members there for decades and with few exceptions, they have come home happy and healthy.
This blog-writing doesn’t come easy for me. With a chemo-brain, dealing with stress, pain, and a host of other maladies I cope with daily, it takes me a while to write an entry that sounds decent. This one took almost three hours. Before all of this, I could have cranked this out in 20 minutes and it would have read better, all around. Another reason I don’t sit down to write in this blog as often.
Don’t know when I’ll be back here again. See you then…
This pretty much sums it up, for those of us with MBC! And when it hits us square in the face, it hurts, deep down.
Dogs who are blind from birth, are the sweetest souls I have ever encountered in a canine. I am fortunate to have such a furboy.
I’ve probably said all this before, but it never gets old, only better!
Love this guy!
Entry Fifty Nine
September 22, 2019
Continuing, Almost a Year Later!
After an arduous, harrowing, and long journey in my attempts to get Social Security Disability, following a Hearing (conducted via telephone) in July, I received a Notice of Decision in August which was – Fully Favorable. I had been granted my Disability.
Concerning the denials in October of 2017 and again in November 17, 2017; the judge determined the State agency medical consultant opinions were not persuasive, because the consultants provided minimal medical support for their opinions and conclusions, which were inconsistent with the discussed medical evidence of record, the judge used to make the Fully Favorable decision. Also, importantly, the physician’s testimony, during the Hearing, was consistent with the evidence that he cited and the medical evidence of record as a whole; supporting the decision of disability, as defined in the Social Security Act.
I have heard, since I first applied for Social Security Disability, that, for some, getting a favorable decision came only after years of denials, appeals, and total frustration with the System. That is so very true, and sadly, much worse… But now I can celebrate! At last!
Some people have a desolate soul; with a desiccated spirit. They have a heart that beats blood; but not charity, compassion, or love. However, those who embrace a dog as family; have a tender soul, a spirit that thrives, a heart that beats joyously with each wag of their dog’s tail, and a shared love that knows no bounds. –kap
I have had trouble breathing since Junior High School, or earlier. I often breathe out of my mouth, more than my nose. It has become so normal a practice, that I don’t realize I’m doing it, unless my breathing (in conjunction with my Sjogren’s) dries my mouth so badly that my tongue sticks to the roof of my mouth. I try to have a liquid nearby, as I must drink something throughout the day and night, in order to keep my mouth moistened.
In addition, after the Hypoparathyroid surgery I had, that ended up damaging the nerve which runs on top of the vocal cords and other vital areas; I have suffered from significant problems with swallowing, breathing, and speaking. I easily aspirate liquids and foods into my lungs if I’m not vigilant about how I am eating and drinking. Once I’ve done that, it becomes imperative I cough continually and roughly, until I’ve cleared my lungs; not always with complete success.
My voice has never been what it was prior to the surgery; it gets breathy, scratchy, gravelly, and crackly. There are times my voice gives out completely.
Directly after surgery, I had NO voice. I could not even whisper – NOTHING. This lasted for quite some time. My voice transitioned from the absence of sound to a whisper, and onto what literally sounded like Minnie Mouse; until, finally, I was able to speak “normally” four months later.
Sadly, before the surgery, I had a nice singing voice – one I had worked on since I was in elementary school. Later, when I was able to pay for them, I took voice lessons. Throughout the years, I sang in various choirs, musical groups, performed in bands and sang solo. That is a gift no longer available to me, due to the right side vocal cord paralysis. 😥 The doctor said my left side vocal cords move over enough to give me a fairly full voice (just not the voice I had before) so there is nothing he would do surgically on the vocal cords. See below
Often, when talking a lot, or doing something, that for me is slightly strenuous or physical, I will lose my breath. When speaking a lot, I must stop between each word, and gasp – taking big, gulping breaths – just to say what I wish to convey. When doing something strenuous or physical, I have the same problem with breathing. I figured all along this was due to the damage done during the parathyroid surgery, though I didn’t know, exactly, why.
Well, much was discovered at my doctor visit that answered the “WHYS?” I’ve pondered over these past nine years:
Working diagnosis: 1. Nasal obstruction secondary to septal deviation (left) and inferior turbinate hypertrophy
Deviated Septum (2 pics)
Inferior turbinate hypertrophy (2 pics)
2. Right true vocal cord paralysis
Vocal cord paralysis (1 pic)
3. Rule out subglottic stenosis
Subglottic stenosis (2 pics)
Treatment rendered in the office today: Nasal endoscopy and flexible nasopharyngoscopy.
Procedure (1 pic)
Other advice: A CT scan of your larynx (voicebox) will be ordered to rule out subglottic stenosis
Sublottic stenosis surgery pics of before and after corrections (1 pic)
Follow up: We’ll make plans for surgery for your nasal breathing.
Lots of pictures, but it is the best way I have to explain and show you what I’m referring to.
Finally, I am thrilled to find a doctor who will do what is necessary to help with my breathing. My oncologist referred me to him with high recommendations; saying he was very good, would do surgery if needed, and he is very knowledgeable.
~ I go in Wednesday for my CT Scan. ~
Forgot to add, I had my “butt shots” today and after reminding the nurse, she administered the injections while I laid down on my stomach. That sure works so much better than when they are done while I stand. She has the medication warmed up and she injects it slowly. The only glitch could be no open exam rooms when it is time for her to give me the shots – if that happens, I’ll have to get them standing. 😞
Furthermore, I found that I no longer am experiencing that hideous chemical chemo/like smell and taste I had each month I’d start the three weeks of Ibrance. I completely believe it is due to having discontinued taking the Carnivora.
Entry Fifty Four
June 28, 2018
Update: I have my surgery date scheduled; the pre-op appointment with a doctor scheduled, who happens to be a heart specialist. I also have a couple of T/C appts with my surgeon – one before surgery and one after surgery. And then I have an appointment with the surgeon three weeks after surgery.
I had a CT Scan and it ruled out the possibility of my having subglottic stenosis. That’s good news.
I have a few questions regarding the pre-op doctor’s assessment and I hope to get those resolved soon.
I have a PET Scan coming due soon and I expect to be getting a call to schedule that in the near future. Don’t know why, but I dread that every time.
I am adding this new segment to my blog. It will appear periodically.
Here is where I’ll share questions, comments, fears, experiences, moments of self-examination, embarrassing episodes, realizations, and whatnot.
While on our way to have dinner at a Japanese restaurant we go to every Sunday night, I realized how much dialogue goes on inside my head; in my skull.
At the time, almost everything that I talk about is mainly to myself; for reasons I feel are best for those individuals I care about.
But, I can’t keep those thoughts all bottled up; I understand I must release them somehow and putting “pen to paper” has always been the most fulfilling method.
These thoughts will, for the most part, be at random and jumbled – because that is how they are bumping around inside my head, as I sample them singularly or all together.
I’m guessing this first “Speaking In My Skull” session will be the longest, as I’m spilling out a bunch of stuff all at once. Other segments should be shorter.
Think of it as if I had taken all this stuff bouncing around in my skull, shook it up, and poured them out on a TV dinner tray. Remember those? They were usually metal or wood and it is what your parents would pull out whenever guests were over for a holiday, and there wasn’t enough room at the tables for everyone to be seated. Also, the kids usually ended up with TV trays, too. But it was cool – you might get a spot closer to the TV that way.
Anyway, TV tables being what they are; small and often slippery, some of the stuff tipped out onto the tray may fall off; to be found after everyone has gone home. So, those pieces will in all likelihood, be scooped up and tossed the in trash. That’s okay; they’ll pop up later, in a Speaking In My Skull Session again.
Well, “Dilly, Dilly” here we go… in no particular order:
What do the employees at the doctors’ offices, the hospital, and in the labs think of patients who have been diagnosed with a “terminal disease?” Do they feel time and money is wasted on the “dying” when it could be better put to use on the living?
How do other people, in similar circumstances to mine, see themselves, from the inside–looking out?
How much longer do I have? HOW MUCH LONGER DO I HAVE?
I sometimes see myself as the “Walking Dead,” “Dead Woman Walking,” and wonder if that is a selfish perception?
What will it be like, near the end? I don’t want anyone to have to take care of me. I don’t want to languish in hospice care or in the hospital. I don’t want to be an invalid, incapable of doing for myself.
How will my husband move on, after I go?
What thoughts is my husband thinking, feeling, sheltering – living with, with me?
What do my family, my friends, people I come in contact with – the medical community personnel, see, when they are with me or think about me? Are they in a state of denial? Are they uncomfortable? Are they jaded?
Which of my loved ones are reading my blog? I know if it were me, and someone I loved and cared about had a blog, without question, I’d be reading all of it! If I didn’t read it, how would that be supporting the person I cared about?
How shall I get past this current depressive state I’m in? I can’t even see past it…
On the flip-side – Why do I feel like life is normal; like it used to be, before? What is making it possible for me to live in the moment, blind to the reality of my situation? And how can I make each day like this?
I am playing at being normal; like a woman, acting in a role. Or a performer in a nightmare. I have no desire to “act,” I want it to be real – I want to be normal; my life to be normal. –Roller coaster–Then again, at times, being that actress, seems like the most natural thing in the world; would that I could play that part forever. 🙃
At night, when I bring my dogs in from their potty break and their fur smells like campfires from the wood smoke carried on the night air from neighbors’ fireplaces in the dead of winter… Will I be able to breathe in that wonderful smell in their soft fur again, come next winter?
How long will I have to enjoy this new home we bought a year and a half ago? I had thought to grow old in this house…
What holiday may be my last one? What family gathering, the last one?
Will I get my car paid off? Will we get our synthetic lawn paid off?
Shall I be able to find out what happened in one of my favorite TV shows when it returns for its next new season? Will I be able to see a movie that I’ve seen previews for and want very much to see, when it’s to be released months from now? Will I get to read the sequel to a series of books I’m thoroughly enjoying? Will I be taking my mother to that Willie Nelson concert in August for which I bought tickets months in advance, for her Mother’s Day present?
My “old self,” the me that I am used to, is gone forever. I am now face-to-face with a different me. The new me cannot operate in that mind which I thought, lived in and felt of as normal. I keep wanting to go back, but I’m unable. And the new mind is somewhat unbalanced; probably never to be fully sane: How could it be, confronting the bewildered, recently created new self?
Will I get to see my Golden Retriever in his full glory? With his big boy fur grown in; long and luxurious. With his bright, intelligent eyes full of wonder and happiness with each new quest.
Will I ever go camping at Sunset Beach or Yosemite again? For differing reasons, we have not been to either place in 2 or 3 years. I MISS IT, SO MUCH!
We have reservations and tickets purchased for our annual trip to Disneyland and I wonder how much strength and stamina I will have? How much different will this experience be from all the other trips we’ve had?
Sometimes I am so scared, and I want more than anything to be able to share that with someone, with no fear of injuring them with my thoughts. Like a child who can go to his/her parent and tell them; and their parent will make it all right.
I’d like go to bed at night, at a decent hour too, and not be haunted by a succession of dark and dreary thoughts, fears and questions. Why can’t I?
Will I be missed? Does it matter?
I had thought to grow old with my Furkin (furry family members) – How much time do we have together?
Ideally, I would be able to give IT ALL TO THE LORD, and be at peace that no matter the pathway I am to proceed on, He will be my guide and protector. But I am only human and that kind of ideally comes pretty near to perfection in my eyes, which is not easily attained. It is a struggle, made smoother by faith and blind obedience which is not always easy for we humans to attain. At least not for me…
And so very important to me: Will my Furkin be loved, cherished, well taken care of, and happy after I’m gone? Will my spouse be able to give them all I want them to have, all they deserve to have? Will I be able to “visit” them here, while they are living out their lives on Earth? I want so dearly not to ever leave them. I hope God will allow me to drop by and be with them.
Thus spaketh the skull; enough for now!
Entry Fifty One
May 21, 2018
A Portion of Heaven
When I got this, now, eleven pound furboy, he was three months old and designated as being a “special need” pup at the shelter. His “special need” – blind in one eye. I already have a one-eyed dog and love him dearly. He gets around just fine and never bemoans not having that other eye; so I didn’t hesitate getting another one-eyed dog. This pup was so absolutely lovable, adorable, and sweet – I fell in love with him as soon as I saw him.
Periodically, I take things to the shelter to donate – items they are in need of for the dogs and cats there up for adoption. Each time I visit, I have a look around at all the residents awaiting their new forever homes. During one of these visits, I saw these charming puppies. If memory serves, there were three tan pups with black markings and three black pups with tan marking. All of the pups had big ears and charming faces. Another of the black pups was also labeled as “special need” as she, too, was blind in one eye.
Whenever you adopt your forever dog from this particular shelter, they provide free “wellness” checks with listed vets. My vet just happened to be on the list for “wellness” checks. I took my new pup in the same day I adopted him. She had one look at his “good eye” and proclaimed that he was blind in both eyes. My immediate concern was that I would not be a good enough mother to a totally blind pup. I need not have worried, as within one hour of his being home and meeting his furry siblings – he fit in like he was chosen especially for our home – which I believe he was, of course. He quickly adjusted to his new surroundings and a person would never know he is blind, unless you study him closely.
For the longest time, it seemed he hardly grew at all. He was a long, big eared pup; with the silkiest coat. He was like a slinky with fur. But, in a sudden growth spurt, his legs grew long, his muzzle lengthened, his body grew even longer, and he finally grew into those big ears. And a sweeter soul I have never known in a dog, ever.
He is the kind of dog who wants to be close to his human, especially when he is resting or sleeping. When it is bedtime, he will follow right on my heels, jumping and reaching up on my legs, sticking to me, as I head to bed. He does this, I think, because he does not wish to lose “sight” of me and he wants to let me know he is ready, too, to hit the sack.
As I settle down, he, too, settles in for the night. Before “sleep” time, he must give me numerous kisses until he feels he has let me know how much he loves me and how glad he is to be snuggling next to me at bedtime. Lastly, he gives himself a bit of a bath, then nudges and paws and noses and moves until he is securely up against me. He also prefers to be covered up with the blanket.
Now, the sweetest thing happens… just before he drifts off, as he is settling next to me, he gives a big comfortable sounding sigh. Often, his soft muzzle is up against my neck and when he sighs, I feel the warmth of his breath. As he continues to drift deeper into sleep, I feel his warm exhalations on my skin and it is such a calming, sweet balm. I often reach down and stroke his silky fur and feel such a blessing. He is my Portion of Heaven. I love him!
His warm presence against my body, is a shield, from my reality. My Mister Magic
May 23, 2018
Sherlock Holmes and Dr. Watson went on a camping trip. After a good meal and a bottle of wine, they lay down for the night, and went to sleep. Some hours later, Holmes awoke and nudged his faithful friend. “Watson, look up at the sky and tell me what you see.” Watson replied, “I see millions and millions of stars.” “What does that tell you?” Holmes asked. Watson pondered for a minute. “Astronomically, it tells me that there are millions of galaxies and potentially billions of planets. Astrologically, I observe that Saturn is in Leo. Horologically, I deduce that the time is approximately a quarter past three. Theologically, I can see that God is all-powerful and that we are small and insignificant. Meteorologically, I suspect that we will have a beautiful day tomorrow. What does it tell you?” Holmes was silent for a minute, then spoke. “Watson, you idiot. Somebody has stolen our tent!”
May 31, 2018
I’ve stopped taking Carnivora and I have noticed an increase in my strength and stamina. Today I took my Golden Retriever over to the flood control basin across from where my mother lives. She and her Black Lab joined us, and I experienced energy and strength I haven’t felt since the last time we went to the basin. YAY! Dilly dilly! 😁
I was using Carnivora in hopes that it would work in conjunction with the cancer drugs, as it functions similarly – however, the seemingly bottomless pit my strength and stamina fell to seems to be the consequence of using Carnivora.
So, I’m going to see what happens with my test results after removing Carnivora from my medicine intake. I am praying my cancer drugs will remain as effective in working to keep the MBC from spreading as they were when I was taking Carnivora. We shall see…
Entry Fifty Two
June 4, 2018
Today, I did my monthly blood test labs. I also picked up a couple of prescriptions, one for a sinus infection kinda bug I’ve had going for a few weeks now. I also saw my oncologist. As well as talking about how I’m doing, feeling, dealing with everything, I told her about how I’m having more difficulty breathing through my nose. I told her how I had seen an ENT specialist in the past, what he said and how it was left untreated.
I have had trouble with my sinuses since childhood. Just before my second BC diagnosis, I saw an Ear, Nose and Throat Specialist about the impairments incurred from the parathyroid surgery to my vocal cords, and the resulting loss of my voice, and my difficulties breathing and swallowing. When addressing those specific issues, I had him look at my nose, due to the problems I have had most of my life being a “mouth-breather.”
He stated I had a deviated septum and that he would do the surgery to correct it, after he dealt with the damage from the earlier parathyroid surgery.
But, after I had the nuclear test for the parathyroid disease, they found the breast cancer had returned in the lymph node located in my chest, next to my heart, under my sternum and that became the primary medical focus.
After I had radiation and chemo for the cancer, and had left my place of employment, I switched to my spouse’s medical insurance; leaving the deviated septum untreated. So my oncologist secured an appointment for me to see an ENT doctor this coming Wednesday afternoon. I’m curious to find out what he’ll say.
Entry Fifty Two & One Half
Do you know what I wondered about and was afraid to ask, but decided to question it anyway?
If you have metastatic cancer and you need certain treatment, or surgery (e.g. knee replacement, hip replacement, heart surgery, or any kind of life-saving surgery) – Are there are surgeons out there who will refuse to operate on a patient with metastatic cancer? YES!
Some may operate after they have asked the patient’s oncologist “How long does your patient have to live?” If the doctor says two years or more, some surgeons will consent to operate.
A part of me feared to know this, to even suspect it might be true. I am horrified to find this out. DOESN’T THAT VIOLATE A DOCTOR’S HIPPOCRATIC OATH? I am appalled! It seems to me they are opening themselves up to HUGE law suits for withholding medical services.
What if a non-metastatic patient they perform surgery on gets hit by a car and killed that same month following surgery? What about the individual who has just “mass murdered” a number of people and during the melee was shot by law enforcement officers and he/she now requires surgery? Can the surgeon refuse to render medical assistance? NO!
What about the person with a different potentially life-ending disease or condition, or a person with an incurable condition or disease that will cause their death – are they also denied surgery? Are they also refused medical assistance? Why the silence and secrecy? Why is there not an uproar around this situation? Who’s to say that somewhere down the line, a new drug might be created that will extend the life of a metastatic cancer patient – or may even cure them? But in the interim, a doctor refused to perform a surgery that would greatly benefit the quality of their life; or have aided in their healing… kept them living when that potentially new cancer drug is created that will make all the difference. I am just baffled!
Inmates in State and Federal prisons – many with a death sentence, are still proffered medical assistance and surgery for any and all medical needs. Why would it be different for a civilian with metastatic cancer?
If a patient with metastatic cancer needs non-surgical services, can and do doctors refuse to give it? Knowing doctors can refuse to provide services to metastatic cancer patients puts us in a type of prison, doesn’t it? We are already prisoners in bodies that are betraying us. Prisoners of our diagnosis – and a harshly altered reality. And, now I find, prisoners in a society that may and can refuse us medical help. Disturbing…..
Reading is the best form of transportation. You can be, anywhere. It can be any season. Night or day. If you have something to read, you have more than just letters assembled on a page. You have the company of the author, as he or she shares with you what they have transferred from mind to words, in writing.
You have the companionship of the characters. You experience what they live and what they do. You hear the words they speak and you know what they think, as well. A paragraph can transport you to another land. A foreign country. Another time. Another world.
In the space of a page you may laugh and cry. Experience fright and anger. Awaken to surprise and astonishment. You may even fall asleep and dream about the last passage you read. Your mind journeys past that and you create your own scene.
And should you miss something, you can go back and read it again. The conversations and images don’t change as time slips by. The homes and vistas do not fade. They stay true to the author’s pen. From the most painful to the most wondrous; every emotion is bared to your eye, conveyed to your mind and experienced by your heart.
Fragrances are inhaled. Textures are felt. Sunshine can seem blinding. And darkness, overwhelming–all as your eyes scan the page. You may never meet the author, but the author’s presence is undeniable; the whisper at your ear, the breath on the back of your neck, the laughter caught in a breeze, a spectral voice adrift from long ago.
I am an author and I’m writing, in part, to myself, as there is much I do not want to miss or forget. And there are many enchanting, glorious moments I want never to fade, but grow only brighter.
Entry Forty Seven
May 4th through May 6th, 2018
This last weekend, my husband and I, my brother and our mother went camping at a foothills lake. The lake is at an elevation of 561 feet above sea level, so it is the same temperature as what we have in the valley. The temps this weekend were in the 90’s.
We always go camping on Mother’s Day. It is my mother’s choice to go to this particular lake, as she loves it there. However, we had to reschedule our Mother’s Day weekend, as we have a wedding to attend on the Friday of Mother’s Day weekend.
In the days leading up to our camping weekend, I prayed that the weather forecast would reflect cooler climes, but it wasn’t meant to be.
Since I can remember, I have been extremely heat sensitive. As a child in elementary school, my mom had to frequently bring me home from school, after I’d fall ill during physical education classes when the temps were unrelentingly hot.
Nothing has changed; I get sick when I spend time in the hot summer days and nights. Being as I cannot escape having to work outside doing yard work (e.g. weeding, watering, pruning, planting and transplanting, etc.) or doing something with the dogs (e.g. grooming and cleaning up after them) and even my body trying to accustom itself to an early roasting Spring or the desert heat of Summer; my body betrays me.
We arrived at the lake in the early afternoon and began to set up camp. Between the four of us, we had two campsites. My mother and brother took the lower, larger campsite. We took the campsite just up the hill; it had little shade and was filled with foxtails, as was the campsite my mother chose.
We brought our Golden Retriever and our little Chihuahua/Doxie/Pekinese/and parts unknown blind boy. This was their first camping trip, ever, (and they did so well.) Not wanting them to get inundated with foxtails, I set to removing as many as I could in my mother’s site, as that is where we would be spending the majority of our time.
I was quickly succumbing to the heat and I found when I had made a few trips from our campground to my Mom’s, I was having great difficulty negotiating the up and down terrain. I couldn’t go on. I needed a cane…
I have canes at home that I’ve accumulated from knee surges, but I never dreamed I’d need them for camping, or much of anything else for that matter. And I never wanted to be in a place to need anything to help me along.
So, my husband drove us a distance about halfway home from the lake, so I could purchase a suitable cane. In many ways this mortified me. The only other time I had to use a cane was after knees surgeries.
Both knees have been operated on, my left knee twice, my right knee once. My knees are a’goner. The only option for me is total knee replacement, which I am not too fond of and given my current medical condition, surgery might not be an option for me.
Well, between crummy knees and being overwhelmed by the heat, I was having a hard time of it. I also found my strength waning quickly. I felt like like a woman 30 years older. It was still Friday, in the late afternoon, and I labored to just get around; climbing up the hill to the restroom, moving between our two campgrounds, moving items from one campground to the other. I was struggling to simply breathe. I had to stop to catch my breath; big heaving, gulping breaths of air.
With Sjogren’s, I had to acclimate to “The New Me” and doing that was rough. But now, beyond that – None of this was me; the me I know myself to be! The me that would help my husband move and carry heavy items from place to place. The me who loves to explore the nature trail, or walk to the other campgrounds around the lake. The me who would accompany my brother on a hike to Buzzard’s Roost. The me who would take the dogs for a nice walk around the campgrounds in the evening. The me who would take the dogs to the water in the afternoon to play fetch and then we’d all go swimming. I could do none of this – and it was beyond discouraging and sad. I am wrung out, like an old wash rag; used until it is threadbare and tattered.
But, I was able to enjoy fiery sunsets that painted the clouds aflame with pink, coral, orange, and lavender fire. As the sun set, I would shiver with joy hearing the coyotes cry out and sing in the foothills surrounding the lake. As darkness fell, I’d watch and listen for the arrival of bats; and the screech and hoots of owls. I could sit ‘round the campfire at night and espy the light of campfires and lanterns as they spread out over the lake’s surface, rippling across the waves from one shore to other. And I’d luxuriate in the cooling balm of night air. Additionally, the food we had was quite yummy, overall.
Yet, feeling that my body had betrayed me, I longed for the weekend to be over with. Such a contradiction, because I’d thought to have a weekend savoring the time with my family, human and furry. Expected to have a weekend exploring, swimming, and being able to pitch in with all the chores. It was just not to be. And I feel completely crappy about it. It was a shocker for me! The bald realization, and the huge let down. I don’t think my family realizes how this impacted me; and that touches me, in my soul, filling me with a startling emptiness.
I do believe, in my heart had the weather been cool, I would not have been as handicapped. The thing is, I have plans for other outings; vacations that will require of me the physical stamina and strength to make it through to the end of our trip. And I do so want to enjoy those vacation plans! Gonna hope I can and will…
Entry Forty Eight
May 10, 2018
I feel encapsulated, cut off …TIRED
Entry Forty Nine
May 18, 2018
Another New Acceptance…
(Metaphorically speaking, a harder pill to take than the cancer drugs I get.) :::***:::
When I knew something was seriously wrong with me these past two and a half decades, I fought to find out what is was. When I was finally diagnosed with Sjogren’s, I was both elated and deflated. I finally had my answer, but it came with a harrowing dictate – “Accept the New Normal You” that will be your life until you die.
This was compounded by the already “on-board” diagnosis of Hypoparathyroidism I received in 2009. I had struggled to get that diagnosis, as well, it just didn’t take as long as the Sjogren’s detection.
Acknowledging the diagnoses was easy for me to do, but admitting I had medical conditions that will forever prescribe a different life’s direction was like jogging through a corridor of walls, and running, not through the open passageway, but full bore into each wall in my path.
The camping trip to the lake was an eye-opening lesson on the “New, New Normal and Future Me.”
I shared my shock and concerns with my oncologist; still not believing “this is how it is going to be” for me. She responded with thoughtful and eloquent replies…
“I am amazed how much physical activity you could do – but it is also the main reason you are doing OK now rather than what could be worse. I understand how hard it is to face the reality of fatigue and not being able to keep up what your activity level was.
“The best level of activity is what we say as much as you can tolerate – not to push yourself up to 100% but up to 70-80% of your peak endurance then rest.
“Change course of the life we have planned is an essential part of accepting the life that is waiting for us.
“You are a smart and brave person Kathy, it is time to accept yourself and what you can do physically now and later, rather than what you have and could have done in the past.
“Medications have side effects but your cancer treatment is keeping your cancer under control and is extending your life.
“Physical stamina has limit on every one, whether with or without cancer; the one thing that can be limitless is our spirit.
“I hope you look for ways to extend your spirit in addition to your physical stamina.”
Right now, I feel like the dog in the basket. Unable to carry my own weight, as it were, but looking to enjoy the ride, as well.
I am currently looking into healthy energy drinks (Bang) and at new vitamins, homeopathic approaches, and supplements that may extend my strength and stamina, as well as at any other healthy options I can find… I am also searching for ways to extend my spiritual strength and stamina… I have a great start: I’ve got a supportive husband, a caring furry family, human family and friends, and the Lord!
Questions & Answers
How do you manage, cope, accept, and move on?
How do you keep your sanity?
Let me know through the “Contact” feature on the top right hand area of this page – or – through the “Comment” feature at the bottom of this page.
Please; I’d very much like to know!
This roller coaster ride, that is my life at present, is the scariest, the most unpredictable, and the craziest roller coaster I have ever been on. It is an “E” ticket ride; the cream of the crop of adventurous rides, for all you Disney enthusiasts. It is all the roller coaster rides at Disneyland rolled into one humongous roller coaster.
As you have noticed, if you have followed my blog entries – I am on an emotional, physical, mental, and medical roller coaster that is one nutso experience! It is all rushing so quickly, that I barely have the time to collect myself enough to analyze what’s happening or how to best ride it through, while still keeping my seat.
Because I know this rough-and-tumble ride is reflected in my entries, I wished to make a statement about it here, to remind you – just in case you may wonder, “What is going on with her?”
Me? I’m just bracing myself and holding on for dear life! Time for trying to make sense of it later, while nevertheless, caught up in the THRILL!
I fervently hope this blog is being read by others and that they find something here that is beneficial to them. Whether they have cancer or they have a loved one with cancer. Perhaps, even someone in the medical field, the social welfare field, or some other professional field may find something here they can share with their patients or clients.
And lastly, I hope someone who knows me, is reading this, as I think it will help them to understand a bit of who I am and what a person with cancer is living with. If, however, my family and closest friends are thinking, “I will read it after she is gone. I haven’t the time, desire, or strength of mind to read it now; but after… I should have all the time in the world, to read it and process it.” That won’t be the case, because when all the time in the world, for me, is gone, so shall be my blogs, my social media sites; FaceBook, Twitter, InstaGram, and websites. After I am gone, the time for any of this mattering will be gone, too.
Not complaining, mind you, just stating facts, as they are and have been as far back as I can remember my family line going – which is about as far back as my grandparents. I am guessing there are those of you reading this who can identify with “The Family Curse” as it might apply to your family.
The standing in line at the grocery or department store – or any line, for that matter; curse.
I will carefully select the line that appears to have the least number of people in it and looks to be moving along at a good pace. Inevitably, something will happen so that I will end up being the last to get to the register, after about everyone else who was in a line has checked out and left.
The, We have been forgotten and become invisible at this restaurant; curse.
More times than you would think freaky, we have been ushered to a table, given menus to peruse, then left alone, waiting for the waiter to return and take our order.
Like red-headed stepchildren, it seems the restaurant staff have put us in the magically hidden seating area of the restaurant, and we no longer exist. Thus was the case for the following outing…
I recall the time when my family had made “way-in-advance,” somewhat pricey, reservations for a fine dining river boat excursion on the American River in Sacramento, California.
We boarded the boat, late that afternoon, quite excited by the promise of a marvelous meal, a gorgeous view of the American River as it cruised from one point to another; giving the passengers up-close views of fishing boats, party boats, people picnicking and fishing along the riverbanks, the local wildlife found on the water and amid the rushes on the banks of the waterway.
Come dinner time, we were seated at our table, as waiters brought the most delectable dishes to those seated at tables around us. Mouthwatering! The smells so tantalizing as to cause one’s stomach to rumble in anticipation.
And as the light of day outside went from late-afternoon, to early evening dusk – we sat, stone like, as a simmering disillusionment began to percolate through our good moods, as we belatedly realized – we had been forgotten.
Yes, given our family history; our family curse – we should have moved faster to discern and remedy the situation, but we didn’t.
By the time we motioned a waiter over to discuss what had happened, we were advised they would try to scrape together meals for us from the left-overs in the kitchen – NO LIE!
After eating our most disappointing meal in an empty restaurant aboard ship, we were able to step out onto the deck and observe the river at night.
As the boat was docking, we were gifted an unexpected and delightful fireworks display that was stunning over the water of the river. Though not a feature of our cruise package, it turned into the best part of the evening. The fireworks were being shot off after the game at the ball park just south of us.
Oh, hey! I forgot to mention; we did get a “family portrait” of us that the staff had taken of every guest of the cruise just before they boarded the boat. Plus, we got a small wineglass, as our souvenir. Oh, boy!
If you have been reading my blog, you already know what kind of good fortune I have at doctor’s offices and such. No need to address them here. Suffice it to say, such is my family curse. 😬
Entry Forty Two
April 18, 2018
When I worked, I had to check the obituaries daily to see if I had lost any clients. I did this for decades. Whether it is habit, or curiosity – as I’m getting to that age where those folks listed in the obituaries are more likely to be former coworkers, friends, or neighbors. Sad, but true!
Anyway, every time I read so-and-so “passed away peacefully,” it rankles! What do they mean by this? Was the person drugged, by hospice medications, to the point that they were unconscious? Does it mean the individual was so far into their disease or other medical condition, that they were unaware what was happening to them when they died?
Or does it mean that they were conscious and aware, lucid and able to communicate that they were in a place of peace; a state of serenity and tranquility – accepting of their state of mind and body? If it is the latter – I am “good” with knowing they passed away peacefully.
Another term that I find irksome is: He/she died of natural causes. At the age of 40? At the age of 35? At the age of 50? Yes, if a person has a congenital condition, this would be an honest application of that term. But I often think it is a way to skirt the true cause of death…
Just how my mind kinda veers off, at times, at a quirky angle and then questions: Why?
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NOTE: *****~~~*****~~~***** I got my MRI results today. No brain cancer. YAY! Happy, happy! Now, I guess you’ll just have to understand if you catch me singing, “If I only had a brain!” Or at least a brain not affected by cancer drugs foremost, stress, fear, worry, depression, other medications, the reality of my situation, and other medical diagnoses (e.g. Sjogren’s, Fibromyalgia, Hypoparathyroidism)
Entry Forty Three
April 21, 2018
I’ve been thinking… It is easier to be in a negative mindset than to labor to pull yourself up, into a positive space – “drawing up into your world zone.” The thing about the easier way is that it will eat away at you; just as cancer can do to your body – being a defeatist will erode your mind and emotions and eventually it will reflect in your physical well being and health – infusing it with pessimism and failure.
I’ve been pondering this, because, I’ve put up my shields and find myself dwelling in a fatalistic zone. And the thing about subsisting in this despondent, hopeless realm is that the bleak orientation increases exponentially, feeding upon itself, and burying any hope, joy, or inspiration; making overcoming this “dead domain” near impossible. Eventually, your eyes see only murkiness and shadows; while your heart harbors only despair and defeat. What is left is a ghost of who you are, shambling along; lost and beaten, in constant pain and ruination.
Wow, the Easy Way is wicked and corrupt. Like a premature death, it hoodwinks its victim and entombs their spirit-soul in a cloak of darkness.
Do you know how EASY it would be to snap, and totally lose my sanity? And at that point I feel my sanity would be irretrievable. Do you know how CLOSE I have come to it, or how often? The easy way is the worst way…
So, instead of dropping down into that nether world of confusion and gloom, I elect to choose the Hard Way; to fight to envelope myself in the light and fill my world with prospect, peace, and understanding. Doing so will imbue my world in beauty and strength – strength to lift into my world zone, all that is good and right and a godsend. My spirit-soul will thrive and grow in revelation and promise. The Creator will be with me and He shall direct my way.
“The tragedy of life is not death, but what we let die inside of us while we live.” –Norman Cousins
Entry Forty Four
April 21, 2018
Fireflies, to me, are magic. We don’t get them here in California, which seems criminal to me. I was able to see them when I would visit relatives back east. I’d have to say, the highlight of each visit was being able to witness the fireflies emerge in the early dusk, over the green grassy meadows and twinkling in the trees and shrubs. There is nothing else like them!
NOTE: *****~~~*****~~~***** Yesterday, my oncologist renewed the prescription drug that my primary physician had earlier removed from my medication arsenal. That is a huge relief and the weight of having to “deal” with the absence of that drug has been lifted. In addition: Yesterday, my oncologist prescribed a drug that may help some with my forgetfulness and brain fog. I’m open to trying it; if it doesn’t work, fine. If it does help some, I’m delighted.
Entry Forty Five
April, 25, 2018
Today I went in for my second IV Fluid Infusion. The doctor ordered a total of eight. I have had two now and the staff at the Infusion Center was gracious enough to schedule the remaining six appointments weekly, on Thursdays, in the afternoon.
I have found since taking the cancer drugs I began in January, I sweat very little; I have no oil to my skin anymore; and my skin is very dry. Consequently, I am experiencing problems with my bowels (constipation and and resulting diarrhea from meds I take to counter the constipation,) dizziness, weakness, headaches, and other symptoms of dehydration. Thus, the reason my oncologist wishes me to have regular IV Fluid Infusions.
I clocked my session today. They got me in about 25 minutes after my arrival and got everything set up for the infusion. Once they got the bag going, it took about an hour.
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The following haiku represents the many phases of the “new me” living my “new norm.”
Wind rushing past me Wet sadness blows from my face Driving past my past
Now, onto some haiku I wrote when I was first getting chemo, after my first diagnosis. I HATED getting the chemo. I could taste is as soon as it was put into my vein. I could smell it on my skin. Taste it on my tongue. I ended up experiencing spontaneous bleeding of my gums and nose while at work. My hair quickly began falling out and literally leaving a circle of hair around my desk chair. When I was in my car with the windows rolled down and a good breeze circulating through the car, my hair would blow off my head, swirl around me, before being blown out the windows or onto the car’s floor and seats.
I dreaded going to my chemo sessions, which I had arranged to get after work; or at least close to the time I’d get off from work, so as not to interfere with my daily work hours. On the days I was to go into the cancer center, dread would build up in me and it was all I could do to make myself go. I was a mess, and just about the time I knew I could not go through with it, I would get a delivery of daisies in a vase of water with a card from my mom. Or a vase of colorful flowers would be hand delivered to me by my mother, with a note of encouragement.
I would cry and smile each time she did this, but it gave me the courage to go into the center and get my chemo. Often, my mother offered to accompany me. I usually begged her not to go, as I would often wait two hours before the oncologist would see me and then it was a while to get the chemo – too long a wait, and really no reason for her to have to spend her time just sitting around. Often, I could not keep her from following me in her car, and being there for me.
Even now, after taking my cancer pills, I can smell it on my skin and in my urine. I can taste it on my tongue. A reminder that I am not the me I was before my diagnosis.
Bruised brow, lids heavy with tears, white-shot veins burn hot stab the pupil… dread
Daisies with gold hearts White pot, yellow bow, a card Thinking of you… love
Red ribbon tied ’round Vase of flowers and water Balm, for pain dreaded
Sometime I will write of the radiation I received after my second diagnosis, but not now, for this is enough darkness to pour over for one day; for you and for me.
Short entry today. I still have not heard from my oncologist. I can only guess they must be very, very busy at the office, as she has never delayed this long to respond to my emails…
I have not been sleeping well for several nights. I’m in more pain than usual from the Fibromyalgia, Hypoparathyroidism, Sjogren’s Syndrome, and Chronic Pain Syndrome. My mind, too, is working overtime to visit me with fears, darkness, worries and a myriad of over things that ruin any chance for a good night’s sleep – and those emotions linger into the daytime hours; like haunting shadows.
Furthermore, I had my monthly blood test done Friday and the results overall were about the same as the time before, but there were a few test results that were the worst they have ever been; which has me fretting and wondering what that may signify.
To top it off, one of my doctors took me off a drug that is prescribed for anxiety and nervousness. I was advised that the drug he removed from my regular medications was not safe to take with another drug I am taking for the same symptoms. Fact is, I’ve been taking both medications, at the same frequency and dose for manyyears. Why now would this decision be made?
I can only guess that “the powers that be” have deemed doctors must “intervene” and make “safer” choices in what they prescribe for their patients. I can understand that, given today’s more stringent standards for what physician’s should or should not be prescribing to their patients – but, this, to me, is more than disconcerting: Many days I am barely grasping onto my sanity. Having a medication removed that aids in keeping me sound of mind is quite distressing. (And, it was done without advising me first.)
Since yesterday, I’ve not been feeling well. Could be a combination of overthinking about the PET Scan results, the lab results, the cutting off of a helpful medication, not getting any decent sleep, and mayhap, I’ve caught a “bug” of some sort.
A bit of sunshine in the mix: Friday, my weekly IR appointment for ultrasound (which again I ended up waiting almost two hours before being seen) showed about the same amount of fluid, or less, than last time. But, wouldn’t you know it, on Saturday, I began to feel the sloshing of fluid in my left chest. I’m hopeful that the liquid I feel sloshing when I bend down and stand up again, is the “small amount of fluid” that showed in the ultrasound, and nothing more.
I have another IR appointment next Friday, so I suppose I’ll find out what’s going when they do another ultrasound.
Feeling boxed in and frustrated and sad…
Entry Thirty Seven
Note: I wrote this is November of 2009, after my second diagnosis of breast cancer in September of 2009. I was angry. I felt betrayed by the medical protocol I had undergone, twice; when first diagnosed in 2002 and again with this second diagnosis. I felt betrayed by my body, after all I had put it through to rid myself of my unwelcome resident – and yet it returned; cancer. I was hurting emotionally and anger replaced much of the fear I was trying to push away.
Cancer Survivor – Not
You know, I have never felt comfortable using the term survivor, when referring to myself, or any person who has had cancer and is still alive. A “survivor” to my way of referencing the definition, is a person who has escaped from something–an accident, a natural disaster, a plague, and the like – such as a house fire, a tornado, a car accident, a small pox epidemic.
And I do not think a host is engaged in a war, where they “fight” to “wage the battle” against the cancer within their body. The only military-esque similarity would be the weapons used–deadly to what is good and what is bad…
On a more personal level, I look upon my own experience with CA in a different light: my personal perspective definition. I feel more like a domicile–a place where CA had taken up habitation. CA was an unwanted tenant; an undesirable visitor in my abode. And, as directed by established procedure, I went through the necessary steps to evict that resident.
If I am fortunate, the unwanted guest is expelled and I am free of that lodger. But, as may be the record of any dwelling with a history of lives, living and dead, there is usually a good ghost story or two-a haunting, if you will. So, as with many abodes with a few good years on them–the ghost of CA past haunts my home–my body. Moreover, much like the Dickens’ Christmas tale, the ghost of CA present, or the ghost of CA future may visit me. The ghost may decide not to leave, and I am, again, dealing with my unwelcomed inhabitant.
Such is the case now. Two months ago I learned CA has returned to take up residence in my body. I just finished 30 radiation (mis)treatments. In two weeks, I will begin taking chemo–all in an attempt to expel my unwanted guest.
So, do I consider myself a survivor? No, I am more the landlord, the proprietor; haunted by a phantom – the specter of CA; which may or may not take up residence in my abode…
And it is not a war – though weapons of mass destruction are used to rid one’s body of the invasion.
Note: I wrote this after my first diagnosis of breast cancer – it pretty much speaks for itself. 💖
Hey, Watchya Doin?
More than two decades ago, Paula came to work in the task area where we shared an office.
She had been given the position I had been vying for. It didn’t seem at all fair. I labored to make her feel uncomfortable and unwanted.
But because of her indomitable spirit she kept pressing onward with her positive attitude, generous smile, and infectious friendliness.
But I was not easily won over. I was miserable and worked overtime to counter her goodness.
Deep down I had to admit there wasn’t much about her to not like. She was Pollyanna and I was “The Bad Seed.”
Shame and guilt eventually made me feel loathsome. Perhaps she saw through my bristly facade. I truly hope at the time there was some essence of good that glinted from my soul’s innards. I’m guessing there was and she coaxed that spider silk thread out with her charm and began to weave the web of our friendship.
Understandably, a friendship is a two-way mechanism. A relationship functions best when both individuals proffer the finest qualities from their heart and soul. I had a lot of catching up to do and, consistent with my nature, I extended myself wholeheartedly.
Her friendship was a shining gem that sparkled brightly before my eyes. What she offered was beyond description or value. The bond that two beings can cement which lasts a lifetime… Friendship!
The saying, “Hey, watchya doin’?” became a part of our bitter, joyous, disheartening, thrilling, ecstatic, crushing, and wondrous happenings that living life brings.
Those were the words I stammered the night I drove over to her house and apologized for how I had treated her when we first met, admitting I had been cruel.
I should have gone to her earlier in our relationship and apologized. She never spoke of my treatment of her in those first days. She never told me that my actions had hurt her.
But when I asked her to forgive me she began to cry and all the pain I had been responsible for was etched on her face. She merely nodded.
Then smiled at me.
We hugged and cried together.
I heard those words from her during the rough days when her marriage was falling apart and she needed to talk. When there was a suicide in the family she spoke that phrase through the tear-choked pain of loss.
Though we no longer work in the same area, we still work for the same organization. No matter where the job assignment, stress is part and parcel of the job. And many times we’ve phoned the other with the question, “Hey, watchya doin’?”
We have seen heartbreaking human suffering, abuse, and loss. As much as we might try to “leave it all at the office” we cannot always shove it in the desk drawer, turn off the lights and head home with a peaceful spirit.
It is at such times we have sought solace in each other.
“Hey, watchya doin’?” she said. “Why don’t you come on over tonight for dinner? We need to talk.” I did, and she introduced me to her fiance — a wonderful man who would give her all that she deserved. The joy of a good marriage. She was long overdue!
She has asked me that question when her voice bubbled over with happiness because she wanted to tell me her daughter was engaged. And again, twice, each time she learned her daughter was pregnant.
“Hey, watchya doin’?”
That evening we got together and shared our fears. We were no longer young women and the fast rushing reality of years gone by seemed to hit us at roughly the same time.
“My folks are getting older. Oh, Kathy! I am so afraid of losing them.”
Tears burned hot in my eyes. “Me, too.” My father had died years earlier but my mother and step father were still alive and very much a part of my life.
“Hey, watchya doin’?” I asked one late afternoon. “I just got in from work.”
“Why?” she replied.
Emotion choked me as I tried to squeeze the words past my constricted throat. “I have cancer…”
On another afternoon, when I woke up from surgery, I saw her face. By her side was her youngest daughter. They both smiled tremulously.
Their eyes shimmering wet. Their expressions full of love and hope. They had a gift and a card for me, but to this day I cannot tell you what the gift was, or what the card said.
All I saw was the glow of a loving friendship reflecting back to me — the years we had shared our secrets and hopes, our fears and triumphs.
“Love you!” she said.
“I love you, too.” I garbled roughly through my tears. “Thank you for being my friend.”
Two and a half years have passed since that afternoon. We still greet each other with that old phrase. And every now and then we will say…
“Love you! Thank you for being my friend.”
And when I say those words, I count myself blessed to have your friendship, Paula.
Last Monday I started feeling quite poorly. I hung on, thinking it would pass. It didn’t. On Tuesday, I was extremely sick; non-stop throwing up, blasting headache, terribly weak, and with pain throughout my body. I got very little sleep Monday night and no sleep Tuesday night. By Wednesday, I was so weak, it was an effort to get up from bed and walk anywhere for any reason. It was too much to go to the bathroom to vomit, so I kept a pot bedside. I had nothing to eat Tuesday and nothing Wednesday.
I decided to contact my oncologist about how I was feeling. She recommended I come in that day for an IV fluid infusion. I was not feeling well enough to safely drive myself to the hospital, so I called my mom. She came over right away.
On the way to the hospital, I got a phone call from the hospital informing me my oncologist wanted me to get an EKG prior to the IV infusion. They directed me to head to Cardiology as soon as I arrived, I was then to go to the Infusion Clinic.
I felt just awful and upon entering the hospital, I began crying, feeling so miserable – which is not like me, at all.
Due to some error in registering me into the Cardiology Clinic, by a lady who was new to the department, I ended waiting an hour, even after asking 3 employees at the front desk how much longer until I’d be taken back for my EKG.
The clinic was in the process of preparing to close up for the day when they realized I had not been seen yet. Turns out I had never been registered into their system for my appointment.
Because my EKG was done so late, I was more than an hour overdue for my IV fluid infusion, but they called over and advised the staff at the Infusion Clinic I’d be there soon.
Graciously, the lady helping me and a few other Infusion Clinic staff members stayed late to accommodate me. Bless their souls!
Other than what has been given to me at the times I’ve had surgeries, I have never been to an Infusion Clinic. It was in the same area as Infectious Diseases.
Well, the lady sat me down in a comfy chair. For some reason, I was freezing and asked for a blanket, which she promptly brought. It took awhile to find a vein she could slip a needle into, due to the level of dehydration I was in; but after a couple of tries, she found a suitable vein and got the fluid infusion going. She also added Zofran to the infusion. She asked I I wanted to watch TV. She said it helps block out the sounds and activities going on around a person while in the clinic.
I looked around but didn’t see any TV screens. I asked her if she was serious and she said she was; to which I said, “Okay.” I hadn’t noticed until she swung out a device from the side of my chair and settled it in front of my face: Every chair in the clinic had one of these devices – a TV. She asked if I’d like to wear headphones, which I did. And voilà! TV, headphones. In addition, there was a remote control next to my right hand that I could use to adjust the position of my chair; lie down, sit up, or anything in-between. Nice!
The IV Fluid Infusion made a welcome difference to how I felt, though I was still weak, and had no interest in food. But later that night, I managed to eat, and keep down, a few saltine crackers and a can of Campbell’s Chicken Rice Soup. By Thursday, I felt nearly normal.
April 16, 2018
Monday I had my appointment for my “butt shots” and my visit with my oncologist. The last time I had my “butt shots” they were pretty unpleasant “going in” and I developed an avocado sized lump on the right side that was throbbing sore and lasted over two weeks. I explained this to the nurse who does the injections and she suggested I lie down for the shots (whereas I stood for all the others,) as my buttocks would be more relaxed and the thick (warmed) fluid of the Faslodex injections would go in easier, with less trauma afterward. That seems to have done the trick, as I didn’t experience as much pain during the injection and the resulting lumps from the injections sites are much smaller.
During my visit with my oncologist she seems to feel I had contracted the stomach virus that has been going around. That, combined with my body’s reaction to the Ibrance pills, and the Faslodex injections, was why I had become so ill. She strongly advised that I go in as needed for IV fluid infusions.
She told me she put in an order for me to have multiple visits at the Infusion Clinic and that I should take advantage of them whenever I am feeling weak, sickly, and headachy. She said many of her patients go in for IV Fluid Infusions regularly; some even go in every other day… She commented that she realizes how much I dislike having to go into the hospital, at all, but that I must think of all the appointments and procedures as a maintenance program I must keep up in order to remain as healthy as possible.
April 17, 2018
I have an MRI scheduled for this evening, as I wish to rule out the possibility that the cancer has migrated to my brain… If it shows clear, I’ll know that all my forgetfulness and brain fog will be due to meds foremost; then stress, depression, weariness, fear, and the reality of my situation.
April 18, 2018
I have noticed, over the years, that the negative things that have betided my body, for the most part, have and are happening to the left side of my body. Since I was very little it has been so.
When I was a young girl of elementary school age, I suffered an illness accompanied by a high fever. I awoke during this illness one morning to find my left eye had turned toward the bridge of my nose. Though my eye eventually straightened out to a more “normal” position, I was later diagnosed with “lazy eye” also known as amblyopia.
During my fifth or sixth year of elementary school, I had to wear an eye patch over my right eye, in hopes of straightening and strengthening my left eye. And thereafter, I have had to wear eye glasses. My left eye needs the strongest prescription and the damage to my eye is such that no prescription will ever be able to totally correct the vision in that eye.
In the year 2002, 2009 and 2018 – I was diagnosed with breast cancer. In 2002, in the left breast. In 2009, in the left chest (breast lymph node) under the sternum and near the heart. In 2018, in the left chest, multiple areas.
Though I’ve had surgery on both knees, it is the left knee that has been operated on twice, while the right knee, only once. Each surgery was to repair a torn meniscus and shave off spurs of arthritis. The orthopedist also re-positioned my left knee cap. My knees are such that all that can be done for them now is knee replacements.
Since the 1990’s I have had a history of falls that I could not explain, aside from just being clumsy and not paying attention to where and what I am doing while walking, running, trekking about while doing yard work, traipsing on unfamiliar terrain, or simply ambling around the house. Some of these falls have resulted in fractured ribs, multiple scraped knees, shins, hands, elbows and injuries to my face.
It wasn’t until just the last two years that I discovered why I have so many falls – I do not pick my left foot up high enough to avoid tripping over things. It has become so bad that I will trip on the mortared cracks between the tiles of our house.
I believe I am just recently finding why – because my left foot is dragging closer and closer to the ground, instead of being lifted up high enough to be safe. Unless I consciously think about lifting my foot up higher than normal, I am at peril of tripping.
When I was transitioning between being a child, to being a teenager – commencing at about the age of twelve – I began to have egregious migraine headaches. They were on the left side of my head. I had them for over a decade, before they began to taper off.
Furthermore, I cannot hear nearly as well out of my left ear as I can my right ear.
My deviated septum is on the left side.
I am right handed, and right footed. Does that have any bearing on why my left side has so many weaknesses, physical and medical problems? Definitely weird and peculiar. I wonder if any research has been done on this?
There has to be a connection! Why hasn’t this been studied by the medical community? Or has it, and I just have not heard about it?