The Hospice Experience – Part 1 (back story)

Let me start by saying that hospice is fantastic. However, understand that needing hospice sucks huge dinosaur eggs.

I’m pretty sure I’ve mentioned that we have a small town house. maybe 1600 sq ft. divided into up and down stairs w all the bedrooms upstairs. so there is a (very) small living space downstairs that had the hospice bed set up in the middle of it all pretty much on display, the center of attention. boom, right there when you walked in.

During the almost 2 months that Honey was on hospice care, we had anywhere from two to ten people staying in the house at the same time. Honey’s mom and sister stayed just over a month. my heart sister, Jeffa, was down from Portland at least 3 times, it was crazy busy.

Honey decided to quit PT, OT and speech therapy. He couldn’t see the purpose of it if he was a short-timer. he was tired, frustrated, overwhelmed and scared. We were all tired, frustrated, overwhelmed and scared.

I managed to maintain some semblance of control by the grace of The Divine. well, maybe not as much as I would like to think… I made the Starbucks barista cry when I brought my coffee back in tears one morning b/c it wasn’t right. when he said, “relax, it’s just coffee,” I thought my head would explode as I had to explain that, no, it wasn’t just coffee… it was the only thing I could count on to be right in my day. The one thing I honestly looked forward to in the mornings. My coffee was always perfect (and always gratis) after that, but I was so embarrassed to have lost the show that I still feel a little guilty when I see that particular man at work. I actually started going to the icky grocery store Starbucks in an effort to save face.

I changed the decor of my living room to incorporate the hospice experience. And being me, I had to do it all the way (half way done is never good enough for me – I’m a typical oldest child overachiever)… we were jungle themed and all sorts of wild; right down to the throw pillows on the sofa. I’ve got to give him credit – the man never complained and I know that he was not feeling all that virile and Tarzan… Right up until the end – he wanted to make sure that I was happy…. even if it meant sleeping on animal print sheets.

There are a few remnants of the time still floating around the house… The Boy-child still uses the zebra print blanket that was on the sofa, I still wear the pink leopard print robe that I had to get b/c it was too cool to pass up and I still simply can’t justify parting with the very expensive towels I bought to round out the theme… otherwise – it is all gone. I couldn’t bear to keep the reminders and neutralizing the décor seemed a lot easier than moving.

So, I guess this will have to serve as the back-story/introduction to all that was hospice… there is so much more to tell, but I am still sorting things out. I’m hoping that by actually putting this down in words, I can process and get me some closure. It’s time. It’s been time for a while now.

So, yeah… there are some very funny stories tied to the time we were with Hospice, there are also some sad/emotionally wrenching stories. But, then, I think that’s the way it is with almost everything. We do what we can to get through and hope that when the day is done we still have all our fingers, toes and wits about us. For the record, fingers and toes are much easier to keep track of than wits.

I have forgotten more of that time than I can remember (I think that might be a product of self preservation) but I find myself reflecting back with a greater sense of peace than I’ve felt before now. It has taken quite a bit of time and trial to get to a place that I can talk about it – but I’m here now, and all y’all were so good to us as we were enmeshed in the act of trying to get through each day with our dignity and nerves intact, that I do want to share it with you. I’m not sure if this is a selfish or selfless act. It is hard to write about – but I feel a certain lightness of spirit having started the endeavor. I’m not sure when subsequent hospice posts will make their debut – but you know as well as I that I am compelled to share and share I will… still trying to decide if this is a character strength or flaw…

Thank you, my Dear Hearts.

Love you.
and thank my lucky stars for you all the time.

A Widow For A Year (+)

Dear, My Loves,

I am back. It was a long, difficult detour, but I AM back and I have some pretty cool stories to share.

I want to tell you about being a young widow – as it has been for me anyway. I want to talk lonely, bitter, pissy, and about standing directly in the shadow of Grace (the ethereal Grace, not your girlfriend down the street).

I want to tell you about “The Hospice Experience” but that will likely pop up here and again as things remind me. So much, really, is faded or filed away for safety purposes. As it is time, I will dig’em up and tear’em up with you.

So, you knew I couldn’t stay away? Forgot to remove me from your “blogs I follow” list? Stumble by my place while looking for some serious information about chemobrain? (If yes on that last one, sorry.) Doesn’t matter all that much to me why you choose to listen/read, but telling stories is in my nature…. I’m glad there are folk who want or need to hear them.

I want to wonder….
And that’s kinda cool too.
It’s even more cool that we can wonder together
Sorry… segued way too close to something ethereal for having been gone so long . Eek.
(she shivers slightly and gets on with it)

So, yeah. There are stories to be told; silver linings to be sought; and battles to win yet. Might not always be fun, but it’s usually awfully interesting. (I think so, anyway.)

The name of this new era of writing is going to have to change accordingly. I’ve been trying a couple of titles, but nothing actually unique is jumping out at me. So…. all y’all may never hear (or see) this again, but I could use some help here, I think…. Anyway, I am open to taking suggestions. Lay’em on me.

Love you
thank you for waiting for me

~ Me

Mmmmmmmm (so not) Okaaaaayyyy

I don’t know whether I am pissed, seriously fucked up or scared right about now. Probably a good chunk of all three.

Sounds kinda dramatic, huh?

I might be pissed because:

Our Internet has been spotty at best for the past two weeks. This week, I haven’t been able to get on at all. Every freaking time I look at the stupid little box with the 5 stupid little green lights they are instead one orange light and some blinking green ones. Comcast was supposed to come by yesterday – but apparently they found something better to do. Bastards. We are rescheduled for tomorrow. We will see.

In order to write at all, I have had to come to Starbuck’s (which is not bad in itself) but I have one of those “I-am-going-to-argue-my-Christianity-loudly-on-the-phone-while-you-are-trying-to-work-people” and Oh My Goodness do they irritate the fuck out of me.

Shit. Shit. Shit Shit

Phone guy just started in on another on of his “hear me outs.” I didn’t. I didn’t hear him out. I picked up my stuff and came inside – however, prior to coming inside I did tell him that a Christian doesn’t spend 25 minutes trying to convince someone that he is right when he had made a mistake. He simply says, “I’m sorry,” and gets on with it. NFF. So NFF.

I might be totally fucked up because:

I completely got off track after I took Honey’s meds by mistake the other day. That night I fell asleep without taking mine – skipped the next morning because…. ummmm…. no reason – maybe my subconscious mind was playing with my body. That’s as good an excuse as any. Then I took T to the pool during prime sun hours (say it. I know you want to. I also know I deserve it.) So, super sunburned, fell asleep on the chair again did not take night-time meds. (You have NO idea the testament this is to my family. I might’a kicked me out by now.)  This morning, when I saw the backlog of pills in my little-old-lady week-at-a-glance pill dispensers, I decided to try to rectify the situation. I took Weds night’s dose this morning, Thurs morning’s at lunch time and was planning on trying to squeeze another session of meds in sometimes later during the day to really catch up, when I realized that I was getting so manicky that I wasn’t able to make good decisions. I chose to wait til actual bed time to take the next dose of night drugs. (see how that works – made a good decision there!)

I want you to know that I took all those meds not just b/c I am stupid, but because every nerve/muscle/sinew in my being hurt. I had missed more than 24 hours worth of my Lyrica (science’s gift to fibromyalgia) Nortriptyline which gets me to REM sleep when taken at night, and thus allows my body to heal itself – but when taken improperly makes me manic. Oops. On top of that I have doubled up on my Prozac. So, I have a pretty powerful sedative fighting it out with a heavy weight upper. Bad day.

I may be scared ‘cuz:

I have no idea what will happen with Honey’s care. All I know is that we should hear something soon enough. Honey has said I may start calling SN and hounding her after four weeks from his last appointment. I am so scared that we are going to have a replay of last Sept/Oct. And ya’know, that’s not a place I especially want to go

I don’t like to not know what is coming up next. I remember pissing my mom off because I would keep asking, “then what?” or, “how long?”. I have always been that child. My ability to arrive someplace on time is questionable, but you can be reasonably certain I will be there. Maybe I am a little bit of a control person. Maybe. Maybe I need to learn how to let go and not worry. I have a number of books that would be more than happy to teach me their particular method of finding solace. I just don’t know if I am there yet.

Love you (and my own nuttyness)

Have Valium, Will Travel

stream of consciousness writing:

Okay, so here it is – July is my regular time to travel and play. Normally I would have just gotten out of work for the summer, T is with his dad and why not? I lived my wanderlust for 15 years. Now, I visit with it in the summertime. For the past two years, Honey has joined me on the annual OCF pilgrimage. As an aside, that, my friends, is love. He would have been considerably more comfortable at home than camping at Zumwalt. (this is one of the ways he shields me from the realities of Blob – he does way more than he should…)

When  we were coming back to TX from the mighty, mighty Pacific North-West, we were supposed to fly out at the ungodly hour of 5:50am. (Sometimes there’s a reason something’s on sale, apparently). So Honey insisted we get up at 3:30 – just to make sure we are there with at least an hour and 15 to spare (if we are not at least that early, we are technically late according to Honey’s body clock).

Well, I screwed up.

Surprised?

I had us dropped of at United rather than USAir. I tried to check us in at the airline computer and failed miserably. Couldn’t get the machine to do a thing I wanted it to and ended up having to wait in the line from hell to get to a ticket agent. Finally got there, and he couldn’t find our flight information either.

As you can imagine, I’m sure, my anxiety level was kinda getting up there. I was not necessarily at my most calm right then…

Then the heaven’s opened, God smiled and we were found within the inter-world of airlines scheduled with a different airline.  When we arrived at USAir, the agent standing at the end of the queue asked if we were going to Houston. I thought she was very clever and said, “Why yes we are, thank you” and stepped into the line she indicated after she confirmed that we had plenty of time.

Alright, so here we are, in line at the ticket area. Long line. Our lovely cushion of time that Honey built into our airport experience is running out. He is getting agitated – which really doesn’t help me in this situation at all.

Finally, we get to the head of the line and there is an agent who has just come in and is opening his register (do people do that anymore?) and logging on right in time for us to end up at his spot. (yay) I handed him my ID and debit card and was informed that when I was asked about Houston being our destination earlier, it was for a direct flight that was running late – not the three puddle jumpers that’d take 13 hours to get us home on which I have us scheduled. Oh – and they couldn’t find the reservations for the last leg of our trip from Austin to Houston on their system – and while that’s only a three hour drive, we couldn’t drive it cuz the car was at the Houston airport!

Now it is 5:37 and we have not even gotten remotely close to security – all was not well in my world. I was having a major travel crisis moment. I got kinda verklempt and was all out of sorts and was feeling like I had been drug through mud and not wrung out all that well, and, and, and, and…. (can you see where this is heading?)

So, the very nice ticket guy kindly leaned over and did the “there, there” thing, patted my hand and he told me that everything would be ok, and they would get us home, i just needed to relax and calm down…. I’m telling you, when he suggested I calm down, I readily agreed, saying, “You are so right. Oh wait, I have valium in my purse – just hold on for a second, I’ll get it. This is gonna be okay….”

We were booked on that direct flight really very quickly after that. And I didn’t even need to pull out the cancer card…. Go figure…

Off The Grid

Honey and I are on vacay in Portland.

Just spent 4 days and 3 nights “camping” at Zumwalt while we attended Oregon Country Fair.

Forgot my phone at home (again). Am using Honey’s for emergencies like locating friends in the fair…

Honey seems to be holding up okay. He stayed at the camp grounds on Fri and Sat – but joined us on Sunday. We used him to get alter-abled access parking and shortly after we parked, he was taken to the front of the fair by a bike-taxi.

This is all good.

We got Honey a wheel chair because his femurs have been hurting (he expects this is a result of the carboplatin) and we were ready to rock-n-roll. Silly me. One does not “rock-n-roll” while pushing a wheel chair over unevenly compressed dirt paths.

So, we were there just long enough and went just deep enough into the fair for Honey to see The Dress he wanted to get me. I did the try on thing, it looked great, we purchased it, put Honey back into the wheel chair and headed for the exit.

Honey was concerned. This morning he asked if I had had a good fair. I had to tell him that they are all good, and they all have a different dynamic. Would I have preferred it if he came to the fair with me every day? Yes. Would I have preferred to go with my husband to the fire pit and dance to the drums over staying and hanging out at our camp? Sure. Would I choose to do either of those things on my own rather than spend time with him? Not a chance.

We are all okay. Existing under the radar for a few days.

Here is the latest update on Blob: Honey had chemo (both avastin and carboplatin) the day before we flew out to Portland. Luckily they also gave him a drip of something that controlled his nausea for about 5 days. Unfortunately, it has worn off. This does not bode well for our flight home, but I am pretty sure we will survive. We may even live to laugh about it.

what love is

…continued from yesterday’s (this morning’s really) post “What Love Is Not”.

I have been in such a tizzie about this question that I’ve been researching like I was back in high-school trying to write a term paper.

The last time I was this frantic about finding my truth, I was just starting out my search for the important questions to my answers. Because this quest also feels very much like a spiritual journey, I decided to once again look towards faith teachings for answers.

(Did you know that you can find information relating to almost EVERYTHING in holy texts? Pretty cool, that.)

Anyway, The Hebrew Bible (or The Old Testament for those Christians who’ve adopted it and call it their own) references four types of love that exist between people: storge, philia, eros and agape

Storge  (storgē), the first love between people is literally the first love between people.  Storge means “affection” in ancient and modern Greek. It is natural biological affection, like that felt by parents for offspring.  This ‘love’ is the type that binds families together so that, no matter what external forces come against them, the unity of the group remains complete and unbreakable. Even though suffering and heartache may come into their experience, storge love binds the family together and strengthens its ties.

Philia (philía) means friendship or affectionate love in modern Greek. It is a dispassionate, virtuous love. It includes loyalty to friends, family, and community, and requires virtue, equality and familiarity. Philadelphia, The city Of Brotherly Love, derives its name from the root word philia. Philia would be the love that defines patriotism, school pride or the relationship between the fans of a sports team. Although it would appear to be benign, a negative aspects of philia may present as prejudiced behaviors and mob mentality.

Éros (érōs) is passionate love, with sensual desire and longing. Eros is the type of love that we usually think of when we first ponder ‘love’. It is often exciting, overwhelming, and wonderful. Eros is the type of love for which we long, the love for which we may indeed wile away the hours and commune with flowers, the love that inspires poets. Eros is the type of love we are referring to when we say “Love hurts”.

Agape is the final Greek word for ‘love’ used in Scripture. Agape is defined as being unconditional, pure love. It is a love that stems from the ability of the individual to see the divine spark in all life. Agape distinguishes its character from ‘eros’ which has more sensual associations. The word was used extensively in early Christian writings to express the love of God or Christ or the love of Christians for one another and was translated in Latin to caritas or ‘charity’ in English.

So, by these definitions, Love is then about passion and sexual intimacy. All the angst, the crazy butterflies in our stomaches, love is about all of that too. But, sadly, that kind of love is fleeting.  We so desperately want to live in a state of agape that we trick ourselves into believing eros is so much more than it really is. And then, then when the shine is off the penny and the newness of a relationship has faded, we find that we have “fallen out of love”. With our naive and unrealistic expectations of love we are literally setting ourselves up to fail.

I think the primary difference between agape and other manifestations of love is intent. When we strive to experience agape, we consciously tend to our relationships with others. We cultivate and work at maintaining such love. Agape is love in action; if relates to  what we do rather than how we feel. Eros, storge and philia are more passive than overachiever agape.

Sadly, way less emphasis is put on the role of agape in our culture than other types of love. We convince ourselves that eros is the end-all-be-all and that all we need is love. Hmmm. Crazy, huh?

So, Seal and Heidi…. I guess they held tightly to their eros for the duration, so sad that in the monotony of the day to day they didn’t have the skills to shift along the continuum from eros to agape. Passion fades, good looks are subjective, belt-lines expand and hair falls out or turns to grey. For love to last, honest hard work must be part of the program.

At this point, I would like to state that I think the worst thing to ever happen to the status of love in western society would be the release of the movie Love Story based on the book by Erich Segal and starring Ryan O’Neil and Ali McGraw. The famous quote, “Love means never having to say you’re sorry.” comes from this movie. Unfortunately people still believe this claptrap and behave accordingly. We all know, though, that love means having to say you’re sorry all the time, don’t we? Love is not about being right, it is about being… well, being loving.

Love you (and all your quirks – cuz they’re what makes you you)

what love is not

One word frees us of all the weight and pain of life:

That word is love.

-Sophocles

Not sure I agree with Sophocles’ philosophy of  love there.

Struggling to come up with a better one, however.

Let’s start with what love is not.

Love is not an emotion.

Love is not something  you “feel”

Love is not about having sex.

Love is not fixing someone who is broken.

Love is not  changing someone else.

Love is not controlling.

Love is not complacent.

Love is not co-dependent neither is it enabling.

Love is not a hole one can fall in and out of.

Okay, so, let’s move on to what what love IS.*

Love is a job.

Love is what you do.

Love needs cultivating…….

damn…..

I was all set to present this entry as a rant, but that didn’t work out because my anger dissipated when I started putting my thoughts together. Then I realized that I was sounding all Corinthians 13-ish and that isn’t where I want to go with this either.

I feel like I am sloshing through a bayou of discontent. I have been debating with myself, questioning my belief system,  looking to my friends and family (and Google), reflecting on relationships long gone – all in an effort to define what love is. Or what love is to me at any rate….

***the following three paragraphs serve absolutely no purpose other than to provide a little digression that allows me to think about what I really want to say (feel free to skip if you’re not interested in taking that extra time for a moment of Jenn….)***

My secret guilty pleasure is celebrity gossip.  Generally, reading about the rich and famous and their woes, contributes to my feeling a little better about my own issues. For example: no matter how overheated, miserable or depressed I’ve been, I have never shaved my head nor have been busted by the paparazzi without my skivvies. (Thank you, Britney Spears.) I have had a couple of my own nervous breakdowns that have been quite spectacular, but then along comes Charlie Sheen (and Brit again) and my problems look like a mild bout of SAD.  Watching Jon and Kate was too much, even for me, but I sure could read about them and, wow, did my family shine in comparison (ALL of my family).

In the midst of all the day-to-day drama, in an age when marriages have about a 50-50 shot at lasting, some celebrity couples just seem to work. Perhaps they are the exceptions that prove the rule. Perhaps we need these subtle heroes to emulate. I am thinking of couples like Paul Newman/Joanne Woodward, Kevin Bacon/Kyra Sedgewick and Danny DeVito/Rhea Perleman.

At any rate, I am having difficulty wrapping my mind around Heidi Klum and Seal’s divorce. (I want to remind you here that despite any proof to the contrary I am actually a very intelligent person.) I know that celebrities and their issues have no impact in my life, but They presented as an ideal couple – at least all the weeklies made it seem so.  She was quoted regularly saying how wonderful, handsome and considerate  a husband he was. They were often photographed out and about with their family. He adopted her first-born. Yet, they either couldn’t or wouldn’t find a way to salvage their marriage and preserve the structure of the family unit. Those “close to the couple” have referenced his temper and her resentment of the lack of passion in their union as possible  contributing factors to the demise of  their marriage.

That just doesn’t seem like love to me.

Ummm, so it’s past 3am and I really need to make an effort  to get at least five hours of sleep tonight – so this is going to have to be a two-parter.  As a warning, I will be getting religious when I start in on what love is. (tomorrow, I  hope)

Love you (and caffeine, dear, dear caffeine)

*Note: it is significantly easier to define what love is not than what it is