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.