The Week Ahead

I had better write this while I have the energy. This is going to be a tough week and I feel as good now as I will for the next seven days.

I start my second round of chemo today. I go in every day for the next five days and get an infusion of Fludara. While the side effects are pretty minor on the scale of all the bad things that can happen to chemo recipients, I will feel progressively worse as the week goes on. By Friday and Saturday, I will be in the proverbial dumpster. Fortunately, those effects are short lived and I should be feeling better by Sunday and back to “normal by Monday. That’s the script anyway. One never knows though.

The mystery pain in my throat is still there and that is a little worrisome when I know that the next round of chemo will make me even more susceptible to infection. It hasn’t gotten any worse over the last few days, but I am not sure it has gotten any better either. I’ll be discussing it with my oncologist today when I see him prior to beginning my treatment.

In other news, J worked his first state fair shift last night with a friend. They “manned” the Saints booth in the grandstand. The Saints are the local minor league ball team that C and I used to watch on a regular basis. When the team first was formed, we shared season tickets as part of a group from her law firm. It was great fun.

When we moved to Sxxxxx, a family moved into the house right behind ours and the Mom is the groundskeeper for the team/stadium. It was their daughter who asked J to come and work the booth last night.

J is going to have a busy week. He is taking a class every day at the Science Museum and as luck would have it, it coincides with my daily chemo schedule which means that we have had to work out a network of drop-off’s and pick-up’s for the whole week. What a pain. I want to thank all of the folks who are taking a chunk out of their daily routine to give us a hand with this. J’s class was set up long ago of course and when my chemo sessions were initially scheduled, there was no flexibility to shift them one week in either direction to accommodate the Science Museum class. It reinforces the realization that we cannot live alone as an island. We are part of a larger “family,” a community that helps to take care of each other. I don’t know how we would survive without that. Thank you.

P.

Garbage

Some of you expressed a desire to know how I have been feeling.

Right now, I feel like that heavy, sloshy thing that you might see at the bottom of an extra-heavy-duty garbage bag hoisted (barely) out of the can when a housekeeping staffer is emptying the garbage containers at the State Fair and you wonder with rapt fascination if it will burst as he swings it up into the truck, spraying all those cheese curd eating fairgoers holding onto their screaming, cotton-candy covered kids, with essence of eau-du-deep-fry. In a word, I feel like crap.

I went in to the clinic yesterday for an unscheduled visit because of a pain in my neck (no, not the kids). I had no fever. My blood counts were good considering the chemo I am doing tends to do a number on them. My white counts were down, but not be much. My throat looked good, as did my ears. My neck was quite sore though and has been since sometime early Tuesday morning. I remember tossing and turning with pain in my dreams.

My onc thinks maybe I have an infected salivary gland. The positioning is right and he said that they can be quite painful if they get infected. He gave me a prescription and sent me home. I am scheduled to see him Monday to begin the next round of injections.

So this morning, I have one dose of the antibiotic in me from last night and will take another as soon as I finish this post. I can’t tell if I am coming down with a cold or not in addition to the neck pain. I hope not. I haven’t been sick in three years (if you don’t count this little cancer thing). Getting sick while doing Fludara is a real pain because it takes forever to get rid of it and you are open to all kinds of secondary infections. So I am feeling lousy right now.

The last time I did this ten years ago, I had someone to take care of me when I got like this. I would crawl into my little hole and do my hermit thing knowing that someone was out there taking care of the kids, paying the bills, cooking the meals, being a mom (for everyone). Now, I have to do this on my own and it makes it feel so much harder.

Before you all jump up and volunteer to come over with chicken soup and lasagna, let me say that my last statement about “doing it alone” is both true and false. I know that I have all kinds of support out there, for which I am extremely grateful. I depend on you guys.

Having said that, it is not the same as having a life’s partner next to you whom you know so well and who knows you in all your fine and not so fine ways. I miss that more than I can adequately express, and when I feel down, I miss it more. So, today, I am whiney, slimy, and not feeling very good. Hopefully that will change as the day goes on.

P.

Lazy Hazy Summer

I am sitting in our lower level where the computer is, listening to K go through her cleaning chores upstairs. She always sings while she works, ipod earbuds in place so she can’t get that immediate feedback as she sings along with whatever is playing. Consequently, she is usually a little off key, which for her is unusual. I don’t tell her because I would rather she continue to entertain herself while she does her weekend work. It seems to make it better for her, and having her do her stuff definitely makes things better for me.

It is one of those beautiful late summer days here. The temperature and humidity levels are just perfect. I finally got out on a bike ride after meaning to do it forever. I did my standard loop of 35 miles – something I was not sure was a good idea due to my lack of training and my recent chemo. I figured that I would just “listen” to my body and would cut it short if I felt like I was getting overly tired. Of course that doesn’t work anymore once you are at, or near, the halfway point, but I made it. My legs are feeling a bit wooden at the moment, but that’s OK too.

J is off with Aunt P, camping up north, so it is just K and I (and Sophie the Wonder Dawg, of course). Things are made even quieter because K is working off the second weekend of a grounding that was the result of some poor decision making earlier this summer. The terms of the grounding are no car, no phone, no TV, no computer. So, the normal decibel level of the house is considerably lower. K decided to spend some of her time working on a jigsaw puzzle and that has provided a nice activity for her.

We talked over dinner last night about that and I kind of wish life could proceed at this slower pace more often.

Tomorrow, things will be back to normal however (kind of) with J returning and part of K’s penance disappearing.

In other matters, we are making some headway in settling C’s estate. We had a court date last week where the Ramsey County court granted our petition to have C’s will recognized. This is the first of many steps in moving on to our new lives. I was also able to finally get someone at the Social Security office to work on our application for “survivorship.” They said that they were able to clear a few hurdles and that K and J should start to see monthly checks soon (I am not holding my breath). I hope this turns out to be the case for it would help things out.

Well, that’s all for now. I hope this finds you all well and enjoying the summer.

P.

Back

We are back from possibly the best Blues Fest in the nation. I know - quite a boast, but when taken in total, music, setting, community - this is a winner.

Over the course of the four days, I heard a lot of great music. The people watching was tasty as well. This photo shows a common sight of a freighter floating past as the crowd soaks up the sun and sounds.

Today is a bitter-sweet day for me. Today would have been our 20th wedding anniversary. I posted more here, so, nuff said.

Right now, things are still quiet round the old house. The kids are sawing logs. The dog is stretched out on the floor at my feet. The paper has been read and breakfast eaten. Soon, I will put on some old clothes and go out to weed the front garden in memory of C. There will be other tasks done today in her memory - things that I know would bring her pleasure. I can't think too much about them though, or my vision blurs and I start to leak.

I miss her.

P.

Heading North

Bout this time of year, we head north for a few days of blues, brats, beer, and family visits. There is a major blues fest in the town I grew up, right on the edge of our great inland sea. The festival site is right down on the harbor with some of the best scenery around.

Aside from the music, it is a time to sit around catching a few rays, visit with old time friends from lifetimes ago, and enjoy the fresh air.

Since this is an active port, it is not uncommon to see a 1000 foot freighter slowly passing behind the main stage as somebody belts out the blues. Quite a nice combination.

While I will be spending most of my time listening to music, the kids will be hanging with their cousins doing things that they find more pleasing. This is a win/win deal (as long as they are on their good behavior). The girl is on a bit of a probation due to poor decisions made at the larger family reunion last month in Oregon.

Don't know if I will have access to an on-line connection up there, so it may be a bit before I check in again.

P.

Death Strikes Again

Today is better. I have some of my zip back and have spent the morning baking bread and clearing the tumble weeds of dog hair from the upper level of the house. It was then I found the body.

I had finished the master bedroom and was working on the bath when I noticed a tiny pile of what looked like sawdust behind the toilet. It was up against the baseboard and upon squatting down and peering under the tank, I saw that there was more atop the baseboard directly below the spot where the water supply entered the wall.

There was one of those cosmetic metal rings that goes around plumbing pipes to hide the rough cut of the hole in the sheetrock and that was out from the wall a little ways with what looked like insulation poking out around the edges in a few places. I figured that some ants had gone in and out there and had caused the debris.

I took the floor attachment off the long metal portion of the vacuum wand and began to clean up the little pile on the floor and on top of the baseboard. I then went after the pieces of insulation that were poking out around the metal ring. My first attempts were unsuccessful at removing the stuff and I bent lower and pulled the ring a little further away from the wall. It was then that the tail fell out.

Yes, it was what was left of a mouse that had apparently tried to enter the bathroom from the wall cavity and was able to push the metal ring a little way away from the wall, but not far enough to gain enough clearance to get all the way through. Problem was, he couldn’t get back either and was condemned to enter eternity listening to the occasional flush.

I spose that if it had been anywhere else, I would have detected its presence due to the natural changes in its perfume as petrification set in, but given where it gave up the ghost, that must have been disguised.

It’s a good thing this did not happen when C was here. She hated mice and refused to believe that any rodent would have the temerity to enter a house in this esteemed community. She and I had more than one discussion about such houseguests where she believed they should be totally banned and firmly rooted out and I was a bit more laid back believing that there is not a building built that a mouse could not enter once it set its mind to it and that it made more sense to have a clear understanding about the human living quarters, where uninvited guests should be discouraged, and other bits and pieces of the structure where we wouldn’t worry so much about the occupants.

Anyway, it took me a bit to get all of Mickey out of his nook, but eventually the ring was once again firmly against the wall and all signs of a demise removed, which reminds me, it is probably time to change the bag on the vacuum cleaner.

TTFN,

P.

Poison

Poison, poison in my veins;
Flowing, ebbing, seaking
Hidden spaces in my marrow.

Killing, killing.
No discrimination.
Equal opportunity destroyer.

Poison, poison down the tube,
Drop by drop, death comes -
Hissing.

Poison, poison makes me sick.
Hungover without the party.
Strap a piano to your back tired.

Vampyre, vampyre kiss my vein.
It's vampyre spit my life
is hanging from.

Oh marvels of modern medicine
protect me.

Sharing

The following is from my Caring Bridge site:

I have been thinking lately about this whole “on-line journal” thing that I have been doing over the last three-plus years, and what it means.

To me, it is a way of sharing the pain, the frustration, the joys and the sorrows that go with living, loosing, and parenting in this family of mine. It is a way of moving some of the pain that is inside me to the outside, a releasing of pressure if you will. This sharing is something that we used to do better I think, when communities were smaller and more contained. We, as humans, spent most of our time (in historical perspective) living in tribal groups and small villages where everyone knew everyone and sharing was as automatic as breathing.

It is only recently that we have gathered into mega-villages and have lost the ability to share easily. Until now that is.

The “net” offers us the ability to reestablish communities, albeit virtual ones, where we can share our stories, our good times, our bad. In some cases, these communities are closed and by “invitation only,” such as the Caring Bridge sites. In other instances, the communities are unlimited in access and worldwide in scope, needing only a computer and an internet connection for membership. The whole concept of “blogs” (web logs) is one of virtual communities forming around ever shifting loci of common interest.

I have benefited from both kinds. Over the past three-plus years, I have shared our story with an extended family via the Caring Bridge website, a resource provided free of charge to those experiencing a debilitating illness. I can’t imagine going through what we have without this resource. It has been a way of keeping friends and family informed about our situation regardless of the miles between us, or the time zones that separate the reader from the writer.

It has also provided a means for this extended family to communicate back to us via the guest book, to let us know that they are out there and that they are with us in our journey, even if from a distance. This knowledge has helped us more than any of you will ever know, for sometimes, when times are dark, it is only those little lights shining from a distance that let us know we are not alone. While it is true that we must walk our individual paths alone, knowing that others are walking alongside of us makes it a little less lonely.

Not so long ago, I began to write an anonymous blog using one of the free blog hosting sites found on the web. I did so because, as wonderful as Caring Bridge is, there were sometimes thoughts, feelings, words that I needed to write that were unsuitable for the CB environment. So, I began to write these things down using a pseudonym in the larger, unrestricted global community of the web.

As I did so, I began to find new connections out there – people who, like me, were writing of their lives, their trials and tribulations, their loves and their losses. It is another form of communal sharing, only a bit more on the anonymous side. I have made connections there that might, in time become real friendships, where the anonymity is put aside when there is sufficient trust established.

The one blog I started quickly became two, and now three. Each one devoted to a particular focus. I find my curiosity aroused to see who drops by those “public” postings and who might leave a comment behind. Just as I write and publish in the “blogosphere,” I also have a list of blogs that I visit on a frequent basis to see what is happening in the lives of my new “community.” I need this sharing. I need it more than ever now because I am alone in my “physical” house.

Oh, I am not alone in that sense, for I have K and J and Sophie, but they are not adults (or even human in Sophie’s case) and don’t understand the pain and loneliness I am going through. My family is there, but they too are involved in their own lives, their own partnerships and cannot relieve the ache that I feel. Indeed no one can.

But through writing, through expressing this ache, I pass a little of the pressure off, and through reading of other’s lives and loves and losses, I feel not so alone. Sometimes I leave a thought on one of their guest books to let them know that they are not alone either. It does not take their pain away. It does not take mine away. It does however, share some of that pain, and in so doing, eases it a bit.

So, there you have it, my thoughts this morning on sharing and community. Before I go, I want to let you know that I am grateful for all who have called or written regarding my recent postings that talk about the stress levels in the family. I am going to try to lighten up a bit with the kids and not feel so territorial with them.

The remainder of the month of August will be interesting on several accounts. I am currently doing another round of chemo. This is the same treatment I did ten years ago and if I can get the same kick out of this one as I got then, I will be more than satisfied. This is unknown however and I remain optimistically realistic about the possible outcome.

What is known is that I will become increasingly fatigued as this week goes on (I go into the clinic daily for five days of infusion and by Friday, I am dragging butt). It will also do a number on my immune system, which has necessitated the beginning of two prophylactic anti-infection medications. My platelets will also drop so I’ll have to be careful around sharp blades. I could bleed to death when I inevitably skin my knuckles working on my car (just kidding).

Today is day three of the five day cycle. So far, so good though I feel the syrupy touch of old man fatigue not far away. House work is going to suffer.

The barrage of paperwork continues related to the settling of C’s estate. I have to force myself to make the daily calls and review the “to do” list. Yesterday was a lost day though because of dental appointments in the afternoon for the kids.

The hellish temps and humidity finally broke yesterday as we got some long overdue rain. It is still grey and cool this morning. It was so nice to crack the bedroom windows last night and to awake in the pre-pre-dawn hours to the sound of water falling all around (only outside fortunately). I was a slug and stayed in bed until quarter to seven.

Well, OK, enough. See you next time.

P.