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
11 thoughts on “Thirteenth Page”
OH Kathy, this is so profound. I think your best blog entry yet. I admire you so much, your courage, your honesty. Please know how much I’m thinking of you and praying for you. You have a friend who truly cares. I know you have many friends who love you so much. I’m storming the heavens with prayers for you as you face these challenges.
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OlRedHair, I am so moved by your support and what you have shared with me about my article and how you are there for me in prayers and positive thoughts. I like how you shared you are storming the heavens with prayers for me as I face my challenges. Your post today has lifted me up and showered me with happiness and strength. Thank you!
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I agree with Old Red Hair, this is the best Blog entry you have made. This is a microcosm 0f all of our lives.
None of us know what our future holds, we walk by faith not by sight. The challenges you are facing are so overwhelming to the common problems and questions we all have about life, but you are standing tall and meeting whatever is to come in a manner that your whole life has encompassed .
We stand with you, we pray for you and we move on, always knowing that tomorrow is not promised.
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
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Sheila and Bob, this was one of the hardest pieces of mine to share. It was painful writing it and it took a while to finish it. I also feared that in sharing it, I might “put-off” some readers. I tried to provide a balance and present it so as to speak to the reader, rather than shut them out. So, thank you for expressing your feelings about the piece! How you described it, is how I wish to have others experience it. Love you both! And as always, I am ever grateful for your prayers and thoughts and scriptures! 💖
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Hi Kathy, I just want you to know that you continue to be in my thoughts a prayers. I’m sorry to read about your little chihuahua. I’m glad that you have had an opportunity to enjoy the music concerts. Even though it is difficult for you to work on your blog, I appreciate you sharing your difficult journey. ❤
I can relate. One of my cats has always had gastro special needs ever since she was a kitten. She is currently dealing with intestinal issues that are vexing. I've been making several trips to the Vet to find answers.
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Thank you, Linda for your thoughtful comments! They mean so very much to me and it was a gift getting them today! The concerts were a nice diversion and Mom loved Willie!
Yes, it is getting harder to work on this blog, just now. But I am honored that you are still reading it and that in some way, it touches you.
Oh, my gosh. Right now my Chihuahua is finishing up her probiotic. She didn’t get sick this last time, thankfully! I’m guessing the sedatives and probiotics helped, as did all the loving and spoiling she received from the veterinarian staff. Probably the spoiling from the staff was more therapeutic than the meds 🙂
I will keep your little kitty in my thoughts and prayers so the medical staff can find out what is going on and get her on the road to being healthy and well!
Hi Kathy, you have b eye n in my prayers. Your blog was the best thing I have read in ages. Your words were so descriptive I rode the roller right along with you.
You may not remember me from the Sjogrens Smart patients forum. You very kindly told me what a prairie wolf was.
For all you have endured, you sound better than I thought you would. I hope you find the energy to add to your work here periodically. I will check in periodically. You please take care. With gentle hugs,
I do remember you! Thank you so much for visiting my blog and for your uplifting comments! I have not visited the Sjogren’s Smart patients forum in ages. I do plan to add more entries to my blog, but I really need to take a break from it for a while. Dealing with what is going on with me is overwhelming and just getting through a day, with my spirits lifted from the dark abyss that this can bring is a gift. It is GOOD to have a new comment here! Nice to know someone is reading my blog and that is touches them 🤗
Kathy, through all your physical problems, it sounds as if you are doing as best as possible. I am sure it is your determination against this ugly monster disease. You are in our prayers daily and also remembered in prayer through our church.
Don’t make the blog a challenge, do it when you fill the need, if it means less entries so be it.
Though I walk in the midst of trouble, you preserve my life. You stretch out your hand against the anger of my foes; with your right hand you save me.
All our love and prayers, Bob and Sheila
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Thank you both so much for continuing to be there with your responses to my blog. I so appreciate your prayers and those through your church! They mean a great deal to me! I have created an additional blog “The Ghost That Lingers” and there is a link to it with my other links. I am using it to vent more freely, more honestly – with less-holds-barred, because I just need to “scream it out” as right now, I am in a dark place, and more depressed then I have been in months. So, on that site, I can let go more easily. As with this site, I don’t know how often I will leave a new post – pretty much, just when I “need” to. Love and hugs and gratitude to you.