Appreciate the Petals

Pam was here today and put together the most beautiful bouquet of flowers.  When it warms up a bit in Seattle, they come out in a burst of beautiful pinks, purples and reds.  Rhododendrons, roses and a bunch of other blossoms whose names I do not know.  I only know they are beautiful.   And now I get to look at them from my couch.  Normally, I don’t like picking them because I think we need to let them be there for the hummingbirds, the bees and all else that makes nature, nature.   I just don’t get outside much so that’s my excuse.

Today isn’t great, but it isn’t horrible.  About a 7 on the pain scale.  Such is life.  Maybe if I thought of the tumors as beautiful flowers that want nothing but to bring peace and tranquility to my heart, mind and soul the pain would lessen.   Sometimes I have this fantasy that someone from the future or maybe from an alternate universe will appear out of nowhere and heal me.  It happens a lot when I close my eyes and meditate or do my drumming exercise.  I haven’t done that for a while; it’s probably time.

When things pile up on you like the death of a loved one on top of a bunch of “gnats” all at once, it’s hard to access that place of peace.  At least it is hard for me.  I get distracted, I have mini panic attacks, my heart races, I can’t calm down, my pain shoots up through the roof and bursts into flames and the world around me is spinning out of control.  You know, like that.   It’s not like that at the moment, but I am in a lot of pain.  Must meditate today.

I got word this morning that a cousin of mine passed away from cancer.  She was in her mid 50’s.  Sadly, her father AND brother died within 90 days of each other, also of cancer, about 40 years ago.  And right now, her mother has it.  These are the kind of things I can’t get my mind around.   How can all these things happen to one family?  I start thinking about fairness, which doesn’t exist in reality….we just want it to so we make rules and hope people don’t break them.  Because the randomness of life drives us crazy so we need to find fairness where we can.  My heart is with you right now, even though we haven’t seen each other for many, many years.  At least 30.  But you never forget some people.

In the meantime, I am most grateful to G-d for making Pam’s journey manageable for now, and hopefully, for always.  She has had a rough life and deserves a break.  It always seems like the best people get the most challenges.  Why is that?  Are the challenges the thing that makes people strong, thoughtful, kind and empathetic?  That of course, is the opportunity.   The lemons can make you angry, or you can make lemonade, right?   There are days I’d like to throw the whole damn pitcher of lemonade at the first person I see.  There are other days when I add a bit of sugar and drink it while eating a cookie.

Wish I could do the positive thing every time.  Oh well.

Good News (so far)

Pam just called me from the doctor’s office….they are sending her to the University of Washington and because the lesion is small and centralized, they are going to do radiation and so far, that’s all!!!  They are hoping that works…one step at a time, right?  She can’t get in for a few weeks but they said it should not interfere with her work or anything else!

I am so happy.  Thanks to all who prayed for her, and thought about her.  It means a lot to both of us and her family.

Care for the Caregiver

I am often not very good at compartmentalizing.   It’s one thing to feel empathy for someone else and offering to do what you can to help, and another thing to take on another’s problems to the point of making yourself sick or worsening something that’s already there.  My stomach and pain issues intensify by 10 when I worry too much and unfortunately, I am very good at worrying.

Pam’s news wasn’t good; it’s cancer.  But she is handling it very well and goes to the doctor tomorrow to see what the options are.  I gave her a blank journal I had that I have never used and told her to write her questions to the doctor in it, and then journal her journey.

I saw my healer today and for the first time, she was unable to move some energy around my stomach and back.  Also for the first time, she said if it didn’t clear up by next week, to see my doctor.  That kind of scares me.  She’s not anti-western medicine; she’s very much into balancing the two.  But my stomach and back and hip are all very painful and it’s harder and harder to empty my bowels even with the laxatives.  She said Miralax should not cause gas but something is causing it. 

I cried my eyes out when I got home from there.  Pam was here, cleaning, and I went into my room to lie down.  I never lay on my bed during the day.  Well, almost never.  I sobbed, I prayed, I bargained.  I begged to be released.  And in between I got glimpses of the fact that this is my life and I best make the most of it, even if it feels like nothing good ever happens in it.  I want to hear about my friend’s ivies, their travels, their work, etc.  And I know it’s far from being all good.  But sometimes it’s hard to hear and I feel selfish.  I want to be at my sisters when she has a party for her daughter’s high school graduation, but I doubt I’ll be able to go.  I want to be able to go see my dad a few times a week after he moves here, but I can’t drive.  He was going to give up driving but has since changed his mind….because of me.  He wants to be able to come see me, and he is in bad shape physically too.  Spinal stenosis.  I want to see him but it’s a 40 minute drive for heaven’s sake.  And that’s in good traffic.

Pam used to talk all the time about how you would “think by now” there would be something out there to deal with the kind of pain I live in.  Well, there is stuff out there, but prescribing it is a problem.   I don’t think doctors keep from prescribing it because they are afraid it will kill the patient (from a personal point of view); they are afraid of being sued by the family.   Even when Ted was dying they weren’t giving him enough although he asked for comfort care.  Literally, it was the night before he passed that they finally did something that made a difference.  Unreal.  “First do no harm” includes not keeping people in agony when you can ease their suffering.

It is my humble opinion that the bottom line to fixing this healthcare stuff IS the bottom line.  That being, there is no money in wellness.  Not the kind of money there is in keeping people sick.  Keeping them in pain.  Keeping them wanting for more.  Now there’s the ticket.

Pentimento

I’ve been thinking of the word “pentimento” lately.  That’s what art historians call finding a painting under another painting….the artist having painted over it.  Or another artist, I guess.  Anyway, I think we are all pentimentos.  Layer upon layer of everything that makes us human, or makes us think we are.   Sometimes we think our “good” qualities cover our “bad” and sometimes it’s the other way around.  All depending on how we interpret those thoughts.  And I put good and bad in quotes because I hate labeling behaviors and the things that happen to us in life.

I saw this movie where one of the characters was wearing an apron that read “shitake happens”.  I laughed out loud.  Shitake happens to us all the time.  All. The. Time.   Two weeks ago I was having that awful time because one challenge after the next was coming at me like tennis balls from a machine.  Then, after the 10^th “challenge” I noticed the base I keep my phone in wasn’t working right.  I almost flew into a rage and then caught myself and started laughing.  I realized these things would keep happening until I figured out a way to deal with it without histrionics.  True, I had every “right” to go ballistic given all that was happening but that right was just causing me more pain.  Ouch.  Giving yourself the “right” to feel bad is kind of sadistic.  Why I must learn that over and over again ad nauseum I’ll never know.  Regardless of your life circumstances, you have to pay attention, even if it feels wholly unfair.  Because fair and unfair don’t exist.  Things just are the way they are, or as people like to say, “It is what it is” And it is.  What it is. 

The pain is bad today without the contributing drama.  Mornings are the worst.  My legs are on fire, my bowels are a mess and if I look to far afield panic sets in.  That’s why I can only take a minute at a time.  Funny, that.  I mean, one can’t possibly take more than a minute at a time (quite literally, of course) but we bandy about that saying like we are all in recovery.  Maybe we are.  Life is like being in recovery of our spiritual self.

Pam hears back from the doctor today.  She stopped by both Saturday and Sunday just to say hello.  I think she’s starting to accept the very real possibility the news won’t be good.  I wish I could help her in some way.  She tells me I have been a great help to her, but I wish I could help financially as well.  Life is so frigging unfair.  I know no one said it was fair, but why is it that the kindest people I know are challenged in ways I wouldn’t wish on anyone, including every politician that rules with his/her bank account.  Then again, it’s those very challenges that make us who we are, providing we learn from them.

There isn’t a square inch of me that doesn’t hurt.  Guess there is more to learn.  Sigh.

Cycles

I’ve been having panic attacks when I wake up.  It settles after a bit, but I have to work on reminding myself I’m okay.  One minute at a time is about all any of us can do, right?  The pain, the bowel issues and everything else is manageable and unmanageable in cycles.  I just have to wait out the really bad ones and enjoy the tolerable ones.   Today the pain is pretty bad.

I watched this episode on NOVA about snake and spider venom and how the venom from one type of snake (forgot which one) is 100 times more powerful than morphine to treat pain.  I have no idea why it isn’t used (when processed for that use, of course).   I know that there is some really nasty snake venom out there that kills,   Thinking about how little help I get for the pain, I wonder.  I wonder about a lot of things regarding what we do to help people with medical challenges.  The bottom line is that there is no money in making people well.  The entire medical community would not exist if people got well.   Millions and millions of dollars is spent on research, and year after year, all the telethons, marathons and lemonade stands raise money and where does it go?   Even if it what is left after “administrative costs” is actually spent “finding the cure”, once it is found, I think it is purposely handed out in tiny bits, if at all. 

One doesn’t have to look far to find fraud.  Everyone knows someone who has been touched by financial loss these past few years.  And I won’t even get started on our elected officials.  Children.  Each and every one of them.  So it isn’t that much of a stretch to see how and why it’s more profitable to keep people sick.  My heavens, the ads for drugs grow bigger every day.  I barely watch television but I’m shocked by the number of ads for this or that drug….and it takes longer to list the side effects than it does the benefits.  Makes you wonder.  People hear about it, go rushing to their doctor to get the pills, and 10 years later they develop cancer and now the ads for that drug are about lawsuits.  It’s endless.  And destructive.

All I want is to be out of pain.  I want it really, really badly G-d.  I’m so tired of hurting all the time.  Of not being about to run to the library, the grocery store or to an appointment.  I’m tired of the myriad of side effects, the neurogenic bowel and bladder and of not being able to be a participant in life, other than online.  I’m tired of being depressed, of searching for the next “trick” to help me through.  I’m just plain tired.

Pam is back today.  Doesn’t know anything yet.  But I’m making sure she doesn’t do much for me today except ferry me around and run to the store or the library for me.  I do have to go with her to get my glasses.  But I cancelled my hearing test today and I’m glad I did because I hurt so badly.  It’s re-scheduled.   And in a few weeks, my dad will be here!!!  At least I have that to look forward to!!!

Old Home, New Home

Last week was one of those over the top challenging weeks.  The gnats were out in full force; pain, bowel issues and two calls about having to do two different review updates for assistance….which I just did.  And a bunch of little stuff that by itself I can handle without histrionics, but everything at once was too much for the fragility that often accompanies grief.   When I saw my healer on Wednesday, she did some grief work.  I actually did feel a lift for a few days but I was blue again Saturday…and frustrated about my gastrointestinal issues.  Trying not to turn it into something tragic by making up all the “what if’s” when I know this comes and goes and will pass.   No pun intended.

On the plus side, its 70 degrees and gorgeous outside…will be for the next few days.  I want so badly to take a walk.  But, the deck door is open, I changed the hummingbird feeder, Oliver is wandering in and out and all is well, right?  Breathe, dang it!  I do thank G-d for the change in weather.  The rain is depressing after six or seven months.  Speaking of depressing, it SNOWED in Minneapolis on May 3^rd.   My dad is so ready to leave there…in just a few weeks now!  I can’t wait!

Okay, here is something kind of cosmically funny.  In 1975 I backpacked across the country and Canada for about three months.  While in Seattle (I lived in Minnesota at the time) I fell in love with the city and swore I would move there.  Well, life took over; I bought a house and was living my life.  Unhappily so.   Several years pass and the Universe gives me a little push...  my brother moved to Seattle for a business opportunity.  A little over three years later I flew to Seattle to visit him.  I had been avoiding that because I knew I'd have to bite the bullet and move.  I came home,  stuck a “For Sale” sign in my yard and was driving to Seattle in six months.   Ten years later my oldest friend moved here.  A year after that, my sister’s husband passed away and she moved here with her two girls  (they were living in NM at the time). Now my dad will be here.   My mom passed away in 2002.  Read "Unreliable Scoreboards"  about how she gave me the push I needed to move.  I have a search engine at the top of my blog to find it.

In May of 1986, while crossing  I-90 and finally heading into Seattle, something overwhelmed me in my chest and I heard this clear “I’m Home” voice in my head.  It was weird.  And now it seems, it’s come full circle.  Home.  I’ve been here 27 years this month.

Life.  You gotta pay attention.  Never know what you’ll learn

The Way Out is Through

I’m still reeling and weeping from the news of Ted’s passing, but deep down I am happy for him.  But can you truly be happy for someone when you’re jealous of them as well?  Maybe not.  Okay.  I must work on being happy for him without getting my stuff in the way (when will it be my turn, etc.).  Wanting what we want when we want it is never a good thing, whether our desire is for a car, a partner or death.  There is waaaaaay to much to learn here.  I’ll never get out!!!  Help!  I’m stuck here on Earth!!!  Someone come get me!!!  Whew.

Pam got some bad news about her liver.  As I wrote earlier, they put her through a bunch of tests looking for cancer somewhere in her body because it often ends up in the liver (but doesn’t necessarily start there….I guess).  Anyway, they are going to be doing a biopsy of the mass and have prepared her for the very real possibility it is cancer.  They even started going over treatment options and putting her on a list for a transplant.  

I am lucky that I have my family and friends and a support system in place.  She doesn’t have that.  If she can’t work, she said she’ll be on the street.  I am practicing letting go of that which I cannot control, but this double whammy with Ted and Pam is a tough one.  All I can do is pray for her, and I do that on and off all day.  Please pray for her as well.

Before Pam called this morning, I was working on another post:

What if, before I was born, my soul chose the life I have.  My father, mother, sister and brother.  My friends.  Every single choice I made before and after my birth.  Including my NF.   What was my soul hoping to achieve?  To learn?  To experience?  And why is pain such a big part of it?  Pain and all the other physical challenges.  People often call them gifts disguised as problems.  Sometimes, I understand that down to my soul and if that’s where these pre-life decisions came from, it’s no surprise that that’s where I’m feeling it.  Maybe the gift is having all this time to ponder those big questions.  Still, if there is a council of angels that helps souls choose a life, they must have been on a coffee break when my soul thought, “Gosh, I wonder what it would be like to have an incurable, painful genetic disorder?”  Or not.

Even when I am scared, worried and in pain, which is most of the time, I still ponder, and I just got a big “Ah ha!” this morning while wondering when this life of mine may be coming to an end.  I know that being jealous of a friend’s death is kind of twisted.   And yet I am.  But that wasn’t my realization.

The realization was if I DID choose this life I must have chosen it for some reason, obviously.  To learn something I may have gotten wrong before, if there is a before.  And if everything I think about is true, isn’t up to me to stay here and learn it, regardless of how I feel about that decision now?   I mean, it wasn’t the ego that chose the life, it was the spirit.  And courting death can’t be good for the spirit/soul.  When I think about ending things myself, the thought right behind that one is “That would be cheating”.   I hate that when that happens.  My mind telling me that this life is all an accident, there was no before, there will be no after, so why not end it now, end the pain?   The battle between body and soul rages on inside of me.  And I get more truculent about it if people start telling me I shouldn’t be thinking that way.  Most of my friends and family don’t say that, however.  But the endless gnawing pain is getting more and more difficult to overcome with meditation, reading, music, movies and sleep.

I read about the world and get even more depressed, more worried, less sure.  I want to make a difference, but I don’t know how.  I want to be a bigger person with a bigger heart.  And when I do pass, I wish never to return.  I hope that’s an option.  I’ve been told by two very spiritual people that it is.  But no one can say for sure, let’s face it.  I’d have to have my spiritual head examined if I said I wanted to come back.  

The pain seems to be moving past the point of tolerance.  My bowels aren’t behaving again (they were for a month or so….with enough Miralax to choke a horse).  I’m wondering if my tolerance for that stuff has past the point of no return.  I hope not.  I’ve lost weight again, though I don’t really care.  I have no appetite and usually have to force myself to eat.  Tolerance for the pain drugs, tolerance for the laxatives.  Are we having fun yet?  And the tingling and numbness are constant now.   My hearing is so bad I don’t know what I’ll do once they tell me what I already know.   And my blood work just came back.  Some things to watch but not treat.  Not that I would.  But knowledge is power, as they say.  

Why do I bother?

I haven’t a clue.

Except that the only way out, is through.

Damn.

Goodbye, My Friend

I had not talked to my friend Ted since Easter so I phoned him this morning.  A woman answered and I knew instantly that he was gone.   It was his ex-wife and she told me the news.  He had been sick with pneumonia and in the hospital.  He was septic.  No pain medication was making him comfortable and the family had to keep asking the doctors for more.  They finally switched from morphine to diladid.  His wish was comfort only; DNR, DNI.   He passed last Saturday, April 20^th.

I met Ted through the Washington state chapter of NF over 8 years ago….the president of the chapter told me about him being isolated, as I was.  So we emailed each other for a long time, then started calling and eventually met one time….a time I will now cherish.  His sister took some pictures of us and I’m posting one here.  He asked me not to while he was alive.

Ted was the sweetest soul I’ve ever met.  In spite of his many challenges, he had a positive outlook and was always kind to people, even when many were not so kind to him.  I will miss his words of wisdom and encouragement, his soft and sweet voice, his wicked sense of humor and our shared anguish over the pain we were both in.  I look forward to the day my journey here is over and the pain is no more.  Of course, I don’t know for sure the pain will be over, but that is my fervent prayer.

Right now I’m in a state of shock.  I can’t imagine never hearing that voice again.  But I am also happy for him; it is what he has wanted for a very long time.  And the past few months he’s told me he knew it wouldn't be long now.  I think he started to distance himself from me for that reason.

Please, if you can, make a donation to ctf.org (children’s tumor foundation) in his name.  And say a prayer for Ted Ptak, one of the bravest, strongest, kindest people I’ve had the pleasure to know.

This was Ted's favorite song.....now that he has wings, he can get there!
 BTW, the pic of us is eight years old....I've changed.

Shelter Me

I just watched this documentary called “Shelter Me” on shelter dogs that are trained by inmates to be service dogs.  It was incredibly touching.  Especially the end when they paired the dogs with the people who need them.  There was special emphasis on combat veterans coming home with PTSD and getting one of these dogs.  I was crying, listening to the young vet talk about how he made his first kill at age 20, and by the end of that day he had killed over 40 people.  He was so chocked up, talking about the men, women and children who he either killed or destroyed their lives by destroying their families.  His description of what he hears and sees daily in his head was terrifying to hear.  I can’t imagine.

And also featured was this woman who looked fine, but suffered from disorder that causes her to “drop” or black out.  She needed a dog to get someone to notice if it happened.  She was crying as she said something like “When they see I have a service dog they’ll know I’m not fine” Boy did that hit home for me.  Invisible disorders/diseases are the worst because everyone thinks you’re fine, you could do more than you’re doing, etc.  Not that I should care what strangers think, but it’s hard when you’re in agony and the person in front of you in line is chatting up the cashier, or there is no one to help in a store, or, like today, I had to use the bathroom in a store and the cashier, who was chatting away with some guy, got upset because I repeated three times I needed a bathroom.  I should have just let loose on her floor.  Pam was with me and tried to tell her it was an emergency and I was ill, but she said something like “Well I was talking to someone”  and then someone else came to open the door and looked at me like I had threatened them with an Uzi.

Life is hard enough without having a little understanding.   I need to remind myself of the same thing; you never know what is going on with someone else, why not give them the benefit of the doubt?   And if it turns out that person is just a sour, mean sob, so what?  That’s their problem, not yours.  By being kind to someone, even someone who doesn’t deserve it is more powerful than being a creep all the time, assuming the worst.  Right.  Like I behave that way.  Well, at least I give it some thought, eh?

Pam went for her CAT scan today.  Her chest X-ray came back clear, so that’s good. But she won’t get the results of the MRI or the CAT scan until Monday.  She just keeps working and trying not to fret.  I told her to call me if she needed to talk….I really, really wish I could help her.  I gave her some suggestions on how to get extra help paying for the bills that are coming in.  Like I wrote earlier, she is worse off than me financially and has HMO coverage through work. 

Please, pray for her

I’m in a bit of pain so I’ll sign off……

Pam

I have been so grateful for the help I get from Pam.  She is an angle and we care a lot about each other.  She brings me flowers and cookies.  I give her food and make sure I thank her while she’s working.  She “mothers” me in some ways though not in a cloying way. That I would not be able to handle.

She went in for an MRI of her liver yesterday.  She has Hepatitis C and has been taking medication for years.  She must do these liver checks, and the last one wasn’t good, hence the MRI.  She just called me.  They are going to be doing a biopsy and they also want to do an X-ray of her lungs to make sure there is no cancer there.  They also are doing another blood draw.  I am not sure what is behind the reasoning of doing the X-ray before they know the results of the biopsy but it doesn’t sound very positive.  I hope I am wrong.   I have been praying for her like crazy.  She is such a love; I don’t want to see her have to face this.  Her son doesn’t drive; they live together and barely scrape by.  She is terrified and I don’t blame her.  She has talked to me about this in a “what if “ kind of way. 

I struggle both physically and financially, but I would be on the street or dead if it wasn’t for my dad.  She doesn’t have that cushion.  She has talked about her fear of being on the street.  She just turned 68 and she works her butt off and in a physical kind of way.  She drags her leg and limps sometimes but tells me it’s nothing to worry about.  She lives in fear that I or one of her other clients will complain about her so she pushes herself harder than she has to with me.  I just hope she doesn’t push too much.  And her life has never been easy.  Harder than most.  She still has a sunny outlook, but she has had challenges as or more difficult than most, including me.

Yesterday, one of my hummingbirds flitted down to Oliver’s level….he was on the inside, hummingbird on the outside.  He kept flitting at eye level for at least a minute to two.  Never seen anything like it.  Oliver’s head was spinning like Regan in The Exorcist.  Poor guy.   Now he’s just yelling at them all.  Its okay, Oliver, I yell sometimes too, just not at hummingbirds.