December 02, 2018

Can’t Catch My Breath

I had a problem with the toilet this evening. It just happened to stop up, just after my husband had gone to bed. The water quickly started rising, and I had to rush to get my husband out of bed to come and plunge the bowl. I have never been able to do it right, and now my strength to do it correctly is waning. After he fixed the problem, he asked me why I was breathing so hard.

Well, after my doctor changed my chemo, and I began having trouble breathing. It became bad enough for me to ask my oncologist to put in a standing order with IR (Interventional Radiology) to go in weekly to see if I need to have my chest drained.

Two days later, my breathing got somewhat better – good enough that I know there wouldn’t be enough fluid in my chest to drain safely right away.

(I had to have my chest drained when I was first diagnosed, but after a few times, it no longer became necessary – indicating that the chemo drug I was taking was doing its job.)

The standing order is for 60 days. Someone from IR called me to schedule my appointments for December. I told her my breathing had improved some and I was not sure draining my chest would be necessary. She said it is far easier to have appointments scheduled with IR – so they are ready if needed – as opposed to having no appointment at-hand when I really needed one. I can always cancel an appointment if I do not need to come in. Okay, that makes sense. And, if gives me a greater feeling of security, having them scheduled.

With this new chemo, I am more greatly fatigued, have continued hair loss, edema in my feet/ankles/hands, loss of appetite, edema, shortness of breath, have mouth sores, more insomnia than my usual insomnia, headaches, feeling faint, am more nauseated, and feel worse overall with Kisqali – all listed side effects of the drug. And, my PVCs have gotten worse.

Still, I know such things as my having trouble breathing or doing other things may upset my spouse; something I have no wish to do. Should I try to act as normal (the old me normal) as possible? Should I just be me, as I am now, honestly – yet a me that is striving to be better and overcome what I can; knowing I may not be able?

I don’t have the answer. I’ll just do the best I can, when I can…

But, still it is troubling. And I don’t really know the best answer for it.

I’ll tell you; this life is one big question mark.

So many different battles. So many days when I am struggling to pull myself out of bed and face it.  When it is all I can do to rise from bed and face the day. Anything else I can do from there is a bonus!

Nothing about it is easy. Unless I just let it all slide and give up. I guess that would be considered easy. But that is not an avenue I want to go down; literally.

I do want to make life for those around me; the ones I love and care about, as livable as possible. I’ll be forthright – that is not always an easy task. It is hard enough for me to live a life that is made livable by my actions. Doing so for others is exponentially more difficult, but vital.

I live in a conundrum.

 

December 01,2018

I Don’t Want to Stop Living

I don’t want to stop living – because of my diagnosis. If I’m going to stop living, I might as well “pull the plug” and be done with it now.

Granted, there are many times I do not wish to live the life I have been diagnosed. And, in my dark times, I think of dark endings. But for the most part, I do not want to stop “living.”

I wish to go on with plans to buy an RV or a nice trailer and go camping places we love and during times of the year where the RV or trailer will come in handy. Certainly much nicer than sleeping in a tent or the back of a van; at least at our age and taking into account my physical and medical difficulties.

I want to continue planning on making improvements to our home. Changing out rooms with carpet for tile. Replacing the cheap, particle wood baseboards. Improving our backyard landscaping. Making some changes in the front yard. Taking our Golden boy to more scent and obedience classes. Seeing my fur babies grow older and being a part of their lives. And so many other “living life” things.

Don’t pull that plug!

 

 

When commercials come on the television or radio and they are about a variety of things relating to medical and or physical conditions, I watch now with a jaundiced eye. Once, many of those commercials directly related to medical conditions I have before the MBC. At the time, I thought my condition so life-altering, that I would listen to the commercials pitching their new drug or cream or device that will alleviate, heal, or make livable whatever is wrong with the person. “Be sure to ask your doctor about… blah blah drug, cream, durable medical equipment.”

So many of those commercials seem trivial now – not to denigrate the condition that would benefit from whatever the commercial is pedaling, but so much of those commercials seem to pander to one’s vanity, or a human’s penchant to being susceptible to suggestion. That’s okay. I was such a person. Just part of being human.

My motto has long been: It could always get worse. I’ve lived by that. Ive put my faith in that. And, voilà, it keeps getting worse. Still, I know, it could get worse than it is. I just don’t want to know what that “worse” might be. I can imagine it. I could research it. These options, to me, are horrendous – the things of nightmares! So I don’t go there!

Did I tell you? Each time an oncologist has said (in words similar to these) to me, “I don’t think you have anything else to worry about now. You have been cancer free for (seven years, and again for nine years) and it looks you are going to stay that way.” Those words have been a curse for me, as each time the oncologist (two different ones) said that to me, within a year, I got a new cancer diagnosis. Tell your oncologist to never say anything like that to you. It has now become a death sentence for me.

Back to commercials. Now, I zero in on commercials about cancer drugs, or cancer hospitals and clinics, and various clinical trials for cancers. I do not want to hear or see these commercials, but just as when you tell a person not to think of the color red, that is all they can see in their mind; the color red.

I’ll be watching a show on television and one of the characters discovers he or she has cancer. Or a member of their family has cancer. Nine times out of ten, they find a cure for that person’s cancer and the world is a happy place again in which to live. I don’t have that happy conclusion. My world is not so jolly a place to live.

These things are inescapable. I wonder how others in my situation deal with it?

I have been handed a death sentence, but I have done nothing to commit the crime. I’ve gone through much to reverse my condition, my sentence: After the first diagnosis: surgery (twice; a year apart) and chemo. After the second diagnosis: Chemo and radiation, with severe consequences. Now, after the third diagnosis: life extending Faslodex shots and chemo drugs for the rest of what remains of my life.

I’m in prison, innocent of any crime that would have convicted me of an offense culminating in a death sentence. But no matter how much I cry out my innocence, it changes nothing. So, except here, on this virtual page, I am silent about it. Too late now to make a difference one way or another. ::shrug::

Back, again, to commercials… How many of you can watch, or even listen to those ASPCA commercials about the puppies and dogs in shelters who need your help? I donate monthly to a number of organizations dedicated to helping animals (especially dogs) in need. I do so freely and with a big heart, in spite of those rip-your-heart-out commercials produced by ASPCA. If I hear that music, or that pleading heart-wrenching voice, I turn the sound off and turn my head, or, I switch channels. Simple as that.

Now, give me those commercials made by Subaru, with the Golden Retriever, Yellow Lab parents and their offspring and I am all ears, eyes, spirit, mind, heart, and soul! They are my FAVORITE commercials! I’ll confess, part of the reason I bought my Subaru Outback was because of Subaru’s dog commercials; true story! Now those commercials make my heart sing! And, my dogs love the car, too. LOL! Great cars, by the way.

Well, this has been another one of those nights/mornings. I’ve been up the whole time. It is 4:40AM and I think I may be able to get some sleep now. Gotta go…

 

 

The ghost that used to haunt me, since 2002, threatening another diagnosis of cancer has come; killed me and has become me. I am now the ghost, living in a temporary host body. The ghost I am works to scare me.

It haunts me with impending death, with the different ravages cancer will exact in the end-time.

I want to shed myself of it. I don’t know how to go on living this life, with the ghost that I am.

People do not know how frightened I am!
I. AM. SO. SCARED! And there in no one I can tell this to who can make it all better. No doctor. No family member. No friend. Not even my furkin.

My spirit-soul shouts it out! I’m scared! I’m scared! I’m soooooooo scared!

If I was writing a book, this might be the name.

Praying Mantises are beautiful, powerful creatures. They rid the garden of pernicious bugs. But they are also mesmerizing; their movements like a trance-life dance. If you direct one onto your hand, they are light as air, very curious, and unafraid, unless affronted. Throughout the years, I have had to save Praying Mantises from dangerous situations and places. I have never experienced anything but sheer enchantment when they are calm and curious. I have also observed them when they are made angry. They stand high and flare out their wings. In an instant they are on the defense and can appear very threatening. Not a creature to be messed with.

Last year there were two Praying Mantises in my backyard; one in a pot of mums, one ine a pot of Golden Fleece. I watched them and protected them as best I could throughout the summer and early fall.

They would become visible as I watered the plants they lived in. One was rather flighty and often took off up the plum tree just behind the potted Golden Fleece. The other one, in the pot of mums was more emboldened and would come out and keep a keen eye on what I was doing and where. I loved watching them; anticipating seeing them on watering days.

At the end of their season, they both coalesced on the stucco of our patio; to mate, I’m guessing. I saw them for a few days on the patio, then they were gone.

This year, there was a rather large Praying Mantis in the front yard garden, in a pot of Geraniums. Like the others the year before, this one only came out when I was watering. This Praying Mantis was different than the two the previous year. This one did not have the capability to change colors to camouflage itself. It was a straw-yellow. Perhaps it was too old to turn colors.

Because of its light color amid the greens of the plants, I worried that it would more easily become some creature’s meal. I prayed for it to flourish and to be safe. Then there were two or three times I was watering and could not see the Praying Mantis anywhere. I wondered what had happened to it. Then while watering the big pot of mint in the backyard I glimpsed a large, straw-colored Mantis. This one had to be the same one that had been in the front yard.

Joyfully, I watched it come us through the foliage each time I watered the mint plants. Then one evening, I saw a green, smaller Praying Mantis. The larger one was not to be seen. My guess, it one was female and one was male and they mated, likely leaving the male dead. I have not seen either Praying Mantis since.

(I love Praying Mantises. I have one tattooed on my right shoulder – very life-like; quite beautiful.)

I’m wondering if those will be the last Praying Mantises I will see?

Thanks for joining me! This journey begins with a death sentence…

Good company in a journey makes the way seem shorter. — Izaak Walton

Is that what I really want? Good company to make the way seem shorter??? Yikes! Good company; yes! That’s it!

The Ghost That Lingers

“The Ghost That Lingers” is me; the ghost that walks the rooms and hallways of my home. The spirit that occupies the failing body of my former self. I’m living a reality that is false; going on as if my life had no expiration date that I was aware of any time soon.

I traverse the same paths as those around me – shopping, running errands, keeping medical appointments, having dinner with friends or family, going to the movies, maintaining the chores around the house that I’m able to do.

I am a ghost who does sleep, but not at the accustomed hours this body used to keep. I usually stay up until I’m so tired, I collapse into my often fitful slumbers. Many days I wish I could stay abed, ignoring the world around me; the “normal” existence others step into as they awaken each morning.

Like a leper; many wish I could not be seen, heard, or thought of. Hang a bell around my neck; I am unclean. Those individuals who are unaware of my condition, though they may take note of my physical fatigue, emotional stress, or mental shortcomings; regard me as being normal. But, as soon as they learn I have MBC, even if they don’t fully understand what that means, those same people take a big step back; distancing themselves. This may be out of fear that being in my presence may somehow weaken their own immune systems, leaving them vulnerable to “catching” my disease. Many do not know how to act, what to say; how to process the reality.

If it weren’t for the chemo and Faslodex injections, I might have died months ago. I have heard from a woman who has been living with MBC for 16 years. I’ve heard of others who have lived 20 years. And, I know, there are women who live far shorter lives. It is like playing Russian Roulette with your MBC drugs, not knowing what time the trigger will be pulled and the life-ending bullet, formerly held back by the drugs, will enter your body.

When I am at family gatherings, or weddings, or every time I go to my furry family members’ veterinarian’s office (even though I only told one person working there – now working elsewhere – and swore her to secrecy) they all ask: “How are you feeling?” I usually reply: “I’m hanging in there.” “I’m doing okay.” “I’m fine.” There is not enough time. And not enough words. I don’t answer that question honestly. Most of them don’t want me to, anyway. It’s too scary. It’s too depressing. It is about things they don’t understand and they’d rather keep it that way. Other people say nothing at all, ever.

Even when I tell family members or friends who are closest to me, I sense a disconnect between my answer and what they hear. A wall they have put up to protect themselves that keeps my answer from penetrating their mind, their heart, their spirit. And it is at such times I wish I had simply told them I was fine.

To many in the medical field, I no longer exist – I am already dead. What need have they to “practice medicine” on the dying physical host that is my body? Or to administer emotional and mental healing to my damaged psyche and splintered cognitive brain? I am a “dead person walking,” as they say about death row inmates in State Penitentiaries.

The only beings who are receptive, willing, wanting to hear it all, wishing to make it all better, and who love me and accept me unconditionally, despite my circumstances, are my furry family members – my furkin. I owe them so much; much more than I could ever repay in a hundred lifetimes. They have prevented me from self-destruction; from self-designed death.

Many furkin, through the years, have stood sure-pawed in my stead, when I was too weak physically, emotionally and mentally to do so alone. And, these are beings I cannot imagine my life not being united with! They have propelled their love on me, each in their own way, through the decades. Through three separate diagnoses’ of cancer, and a host of over serious health conditions, they have been my salvation.

That, and my belief and reliance on the Creator.

This has been my first entry.
–The Ghost That Lingers

The tragedy of life is not death, but what we let die inside of us while we live. — Norman Cousins