March 8th, Jumping out of the pot

​There is a story that says if you place a frog in a pot and then slowly raise the temperatures, he will die there not having the strength to fight by the time he realizes he is in a dire situation, whereas if he's dropped in boiling water, he will bolt to escape the danger. I’m not sure if that is true, but it makes for a great analogy.

​I feel as if I have become that frog, having the temperature raised bit by bit until I find myself in a boiling pot with no strength to escape. It didn’t happen overnight. It’s been a period of years. And I’d be lying if I said I had no idea what was happening. But with no clear escape otherwise, all strength and effort went into the tasks I had to do, which in NH, became ever increasing and stressful. There were so many pieces that all added to the overwhelming crush to keep everyone else alive, while I was slowly dying in the the pot with rising temps. Some of the stories are not mine to tell, but the weight of them was no less heartbreaking and heavy. Eventually, you realize every day is survival mode and you begin to wonder what exactly you are surviving for.

I did not see any of my NH friends last summer, except through the Weathervane shows that were gifted to me at the end of the season. That is not on them, it is on me. I didn't have it in me to be social. All my efforts went towards getting through every crisis, need or challenge as they continued to pop up like unrelenting whack-a-moles. The only people I saw that summer were those who wanted to see my mom. Of course I did. Everything in my life has been slowly restructured to revolve around my Mom and her needs. That's what you do when she is now almost 92 with mobility issues, dementia and hearing loss and you are her sole caretaker. It's also what you do when you are forced to be to sole caretaker for her aging NH property as well. My parents lack of resources and planning for these years doesn't lessen the current need for the care. And now that it is basically just me and mom, it just means I have to do what I have to to get the job done. There is no other way. It’s the slowly rising temp water that begins to whisper messages that only her needs matter. Mine do not. It didn't start out that way. I was just doing what I had to, but over time, the scales began to tilt, the messages got distorted, and the water got warmer...

It doesn’t help that with juggling Transverse Myelitis, Progressive Multiple Sclerosis, and Mixed Connective Tissue Disease, my energy is limited, not to mention my mobility limitations and the extra effort that requires and strain that places on the rest of my body as it tries to compensate. Still, I have to take care of mom. And if there is energy left, I have to take care of the house, and I will use every last breath I have to care for my pups. There isn’t much left after that for anything else, and often my energy runs out mid task, but I push through it anyway. That last statement has finally proven that it may not be the best approach if you are later forced to battle a stubborn illness, and have no reserves left. I'm hoping this perhaps may be a lesson learned.

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So when a routine MS MRI in April of 2023 shows a lesion that has grown in your parotid gland, you think things like, "I don’t have time for this. There is literally no way I can deal with this in NH. It's probably nothing anyway."

And when life gets harder, dark thoughts start to creep in like "Do I even want to know if there is something really wrong? And if there is, is this even a situation worth fighting for? I am miserable. I have given up almost everything that I enjoy and everything that makes me me, except listening to books and my beloved fur babies. "

But I'm not a quitter, so, I listened to my books and I lived for my furbabies, and did what I had to do, until I began to wonder if maybe my literary escapes were a bit silly, if they were my only friends, and then I even wondered if maybe there were homes somewhere that maybe could care for my furbabies better than I could, as my own strength got weaker and my discouragement grew. The last thought bolted me out of my self pity! Well, that was just ridiculous! No one could love my furbabies the way I do! So, in true hope4life180 form, I pulled my big girl panties up, and I held onto hope. I scheduled the biopsy for the day after we arrived in OH. Ok, we were supposed to be here weeks before that, but I did make it to the appointment!

The guy who did the procedure was flippant and cocky. I was able to watch the entire thing on the screen. He barely got the far left edge of it with the needle. “It’s too small”, he kept saying. “They are usually fine anyway. It’s just too small. It won’t matter anyway. They are usually fine.” I knew it was going to be a poor sample before he even handed it over to the pathologist.

I saw the doctor to discuss the results of the biopsy a week later, the day before I was diagnosed with covid. I knew I was sick with more than sniffles that morning, so I called to try to cancel so as not to spread my germs. The person on the phone wasn’t impressed and said just wear a mask. So I did, because I really did want to be there. I had read the results on my online chart, and I knew what they said. I had done my research and I was concerned.

The doctor was a pleasant young woman, but not someone who bothered to do more than barely scan the report when she came in. The top of the report said It was probably just a normal lesion. The middle of the report said that abnormal cells were discovered, though the sample was too small to determine more. The end of the report said there was a 35% chance of becoming malignant if left untouched.

The doctor's response was this. “Well the report says it’s probably normal. That means you can just ignore it, a month, several months, a year, maybe years. I’m not concerned. I’m not sure what that 35% is though. That doesn’t make sense. They are wrong. That shouldn’t have been stated.”

Me: “What about the atypical cells that were discovered?”

Dr: “What atypical cells? It doesn’t say that. Wait. Oh, there it is. Oh, ok. Well, I guess It should come out then.”

She then began to explain all the risks of surgery, including temporary or permanent paralysis of the facial nerve on that side, which I already knew, because I did my research.

My thoughts? I’m not letting this bitch steal my smile. Whatever. Forget about it. If you can’t pay attention to the report enough to read what it says, I don’t trust you with my facial nerve. I'll find someone else.

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Then I got really sick with covid and I went down hard. It took all I had to try to heal enough to prep for and be recovered enough for Christmas, and to enjoy it, which I did. But it didn't last. I crashed again by New Years with what we now know was the pneumonia and this time I didn't bounce back. The old messages started to play in my head again. I could barely survive day to day life, how could I possibly worry about any other challenges, much less finding new doctors or planning surgeries? Then the pipe burst in the music room in NH causing tremendous damage, and still, there was nothing I could do because I was too sick to travel. The pipe was repaired, but that mess and rotten wall in dad’s den were still waiting for me along with with two leaking roofs and a still massive amount of stuff to sort through. And the negative whispers get louder.  “What is the point? You are too sick to do anything you enjoy even while you are in Ohio! Is this really a life worth fighting for?”

And yet in the wee hours of the night, the feisty little light within you wakes you up and says DON’T GIVE UP! YOU ARE WORTH IT!

Ironically, it was at the light of the very next day, when I realized I was so much sicker than I wanted to admit and I finally agreed to go to and then was admitted to the hospital with the pneumonia for a third round of heavy duty antibiotics, this time in IV form. Honestly, it was not the way I wanted to prove I believed I was worth it, but result was the same. The good seed had been planted, and it took root. I was fighting for me. 

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Here’s what happened next. The WVU doctors kept asking who my primary care was before I was released. “Ummm, no one here, but I’m looking to get one….” So I did. I called Greg’s doctor who has cared for him diligently after his life threatening battle with legionnaires disease several years ago, and asked if she’d take me on. I had to be approved. Talk about angst. But she did, and she had a cancellation the next day. I discussed everything with her. She referred me to a well known local WVU ENT who had a cancellation 3 days later! 

He was a delight. Thorough, kind, good listener, and honest. His recommendation? “I get why you are uncomfortable, but she is trained to do this kind of surgery. If it is cancer, you have all the best resources there. My brother, also a doctor, had thyroid cancer and went there for surgery. It was the best choice. I can do it, but I really think you should stick with her”

Well, dang. So I rescheduled the pre op physical I had canceled when I went to the hospital with pneumonia. And then I called the doctor’s office. Shoulders squared. Deep breath. And we now have March 8th as a surgery date. The fact that I just discovered that the date is international women's day, just makes it somehow seems appropriate!

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A lot of moving pieces will need to fall into place before the 8th, not the least of which is care for Mom. But for now, the biggest victory is the decision to continue and fight whatever comes my way, not just ignore it and pretend it doesn't exist. I have lost two beloved family members to cancer far too early in their lives in just the last two years. The fragility of life is not lost on me. I have to believe that a life beyond caregiving, house repair and hoarding management is still out there for me, if I can just hold onto hope. And I plan to. Because as the ZOX card says, "As long as you have breath, you have hope."
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I still need to resolve the coughing from the pneumonia before we are clear to push ahead with the surgery. so I'm hopeful I can continue to improve before my February 21 preop appointment. 

​Thank you for your willingness to share in this journey with me. 

For those of you who might want to learn more about this condition, this site offers a good explanation.

Parotid Tumor information Mayo Clinic

Update 2/18/24

I had hoped to post and share this last weekend, but after I finished writing it, I began to feel worse again. Last Sunday I slept all day, with a weak, but valiant attempt to stay awake for the Superbowl.  By Monday morning I begged my way into my PCP where they informed me I had a fever and sent me off for covid testing and another chest x-ray. Chest x-ray showed particulates in my lungs from the pneumonia that she was prepared to treat with a 4th antibiotic until my covid test came back positive. HOW IS THAT POSSIBLE?!?! I had it in December! I don't go anywhere. UGHHHHHHHH!!!! 

This time I begged for the Paxlovid. The side effects of it rival the disease for nastiness, and I lost almost 7 pounds in 4 days. Not the way to hit my target weight. I will take my last set of pills tonight. I am hopeful it has done its job. I have moments of feeling better, followed by 2+ hours of hard sleep in the afternoon. I have been forcing myself to eat a bit more and gained back a couple of pounds which is definitely a mixed of blessing/sadness, lol. 

I was able to change my preop check up to Feb 29th. If I'm not better by then, I will have to reschedule the surgery, which likely means a lengthy delay. I'm really hoping and praying that will not ne the case, but if I have learned anything, it is that I control very little. When my body wants control, it wins. 

On a side note (but equally frustrating issue), due to a mistake my insurance company made in January, I have been without one of my MS meds for almost 3 weeks. It is very expensive, so over the counter isn't an option. I have spent countless hours trying to get it sorted out. Since it literally helps my walking ability, it is yet another sober reminder to see where my body is at with no help at all. I'm not walking much anyways these days, but still, it's just another blow. Shout out to the gal at Dartmouth Hitchcock specialty pharmacy though for giving me the work around of a Mark Cuban (yes, the shark tank guy) low cost specialty pharmacy site called Cost Plus Drugs, which looks to be a real viable option that I will pursue Monday AM after I call Acreedo one more time and am met with another flaming failure of response. This is an easy bet. 

That is the latest my friends! I will continue to keep you updated as I am able. Check back to this website or my hope4life180 FB page for the latest news!

Again, thank you for choosing to sharing in this journey with me.