Scarier than Halloween

It has been weeks since I have written a blog. Time seems to have suspended for me the last few weeks as I now wait in limbo for test results. A polyp from a recent colonoscopy tested positive for B-cell lymphoma, though as of this writing, doctors are not sure which type or what stage. So it's been a blur of large, scary tests and waiting for each result and a concrete diagnosis and treatment plan.

So far, it seems the primary lesion was caught with that colonoscopy. A CT scan, PET scan and a whole lotta blood tests have been performed and all have come back "clean"/normal. Today I underwent a bone marrow exam, which was (I have to say) one of my bravest moments ever. The doc had to draw it from my sternum. I feel tonight as if there is a big weight on my chest pressing down. Not exactly hurting, just a lot of pressure. It was so weird to be able to both feel and see the oncologist literally screwing in the needle. No tears though - I'm rather proud of that. Won't get those results for another week.

This whole business of a cancer diagnosis is frightening. The first news that a tiny polyp the size of a grain of rice contained lymphoma cells was probably the worst of it emotionally. I mean, I really thought it would literally never happen to ME. How naive could I have been? It can strike anyone - why NOT me? My gastroenterologist must be one of the most compassionate people in medicine. He put me at ease (as much as could be done in the moment) and set me on the new track of testing to see where else this stuff may be lurking. A few trips now to the hospital for CT and PET scans, as well as a few visits with the oncologist later and I'm no closer to having anyone figure out how that lesion could have gotten there or what exactly it was. So today the bone marrow draw was the last of the big tests. I'm wearing the bandage like a war wound and to remind me that I CAN be brave if I HAVE to.

The things that go through one's brain though after a diagnosis of cancer are varied and awful. I waffle between despair and optimism (as each GOOD test result comes in) but feel like the shoe is gonna drop here any time now. Even if it doesn't - I know that I forever will be thinking about how in the world my body could have made those cells and when it will make them again. Is this how I will die some day?

It's made me think of all those things I have wanted to do and put off. A good friend of ours died about 13 years ago - a very jovial fellow that had end-stage liver cancer and never knew it. He died weeks after his diagnosis at the age of about 35. No kids - he and the wife kept putting it off for "a better time." I often think of her now without Brian and with no children either. The last weeks I have thought of them alot in terms of what may be left undone in my own life. Because how much time do any of us have, really? If I had to be gone in five years, what would I like to have accomplished and done with my time? Lymphoma puts all things into perspective.

I'm going to work on a list, but I don't want to call it a "bucket list," as many do with such things as these. I guess I'll call it "My Plan." Because I think it will be important for me to focus positive and creative energy into my daily life, I have to have goals again and some purpose. My purpose now is to live, first of all. Not to wait, pine away, complain or moan, or (God-forbid) be sorry for myself, but to get up and do things for myself that are physically, spiritually and emotionally satisfying. For too long I have waited (I think) for others' permission to live my life how I want to live it. I think I'm done with all of that. I am going to have a plan - and that plan is NOT going to include lymphoma worries. Maybe I will have to fit in my plan around medical tests or treatment, but it doesn't mean that is all I have to think about or do. And it's not going to be spent just cleaning up after others, organizing others or picking up after other's emotional, spiritual, medical, financial and physically messes. I think I've done my time in this regard.

I am not going to let this diagnosis define me. Yes, I am now officially a "cancer patient" but it's not ALL I am or will be.

Social Media

This will be short and (not so) sweet. I am extraordinarily sad today, and I think I need a Facebook break. I don't understand people who use it to brag, to bash others or to promote their agendas. We have enough mainstream media doing all of these things. To me, Facebook, My Space, etc are meant to connect, not dis-connect people.

I made a comment on a friend's "wall" after his posting and the various comments from his friends, one of which I agreed with. He slammed back at me with such vitriol for my difference of (political and religious) opinion I have no idea where it came from. All I know is right now I don't want much to do with him. There is an invite to his wedding on my desk, and I just don't think I'm going any more. I'm really saddened by this remarks and can't believe a friend would react in the way he did, unless he wasn't a friend in the first place. After 15 years believing he was a friend, it is a big blow.

Just because Facebook is a social media does not mean that people should post without any regard to social graces. What has happened with our society?

After Effects

My son has gotten married. It was a wonderful wedding with a unique ceremony (as only he would have) and a really, really fun reception. I enjoyed the entire day, as did our whole family. It couldn't have been any better (unless it was a bit cooler outside - poor Ryan was sweating buckets in his tux.) Speeches were made, toasts given, dances performed, songs sung - just a great time. I hope he will remember it as fondly as I will as the years go on. Hard to forget the day your first born marries. I am happy for him and will miss him at the same time, because I know he now officially belongs to someone else. And she is a wonderful girl, so what more can a Mom ask for, really.

So much of my time the last weeks was wrapped up in that wedding I'm finding it difficult to reorient myself to the "real" world going on around me. News events, family drama, work committments - everything has sort of taken a back seat to the preparations leading up to Ryan's big day. Now I barely know what to do with myself. Well, that's not ENTIRELY true - I always have a significant "to do" list going. It's just a little hard to focus now that the big event is done.

I've been hanging out this week in the northwoods at our family cabin with my husband and his cousins, for the most part. A relaxing week was needed for BOTH of us, and I'm glad that he ended up taking the time to be here all week with me. It's been a good time with great weather up to now (it's storming as I write). So I'm a bit sunkissed and a little tired - all in a good way this evening. My puppy is even tired - which is a VERY good thing tonight.

And so it is that I enter the next chapter of my life both literally and figuratively. While here I have gotten some background information about a local island and its colorful owners- the setting for a story I have been cooking up and playing at writing for some time. The fresh information has renewed my enthusiasm for writing and so it is that I'm blogging again and giving serious consideration to becoming what it is I've always SAID I wanted to do - become an author of fiction. And maybe a little history too - the real history of Denby Island is as interesting it turns out as what I have been dreaming up. Oh the lives people lead!

After a week of lounging around, eating more than I should and soaking up the sun and the lake, it's nearly time to head home and begin anew my day to day life. I think now I am going to schedule in the time to write each day - if only for an hour. Even if I have to get up an hour earlier to do it, I think I owe this to myself.

Life goes on. My son has moved on, and so now will I. Time to turn the page.

Disappointment

It's been several weeks since I have last written. A busy time in my life, to be sure. My son is getting married in two weeks, and I spent a few weeks in Northern Wisconsin at our lake house early in the month. It was pleasant, but rather lonely for me as my husband was not there for very long - just three days at the "fourth". I spent the second week with a cousin, whose company is good, so I don't mean to demean it - but I have been wanting to spend a little time with my husband.

He has been in a job that takes him to other states the majority of the time. And because he is and always has been a career focused person and a workaholic, it seems family has come last on his to-do list for some time. It's a not-uncommon scenario in lots and lots of households, I imagine. And on the bottom of that "sacrifices" list is time with his spouse - me. We talk about it, that sacrifices now in time and energy will benefit us in the long run, but it's really getting increasingly hard to take day to day. I spend my days largely alone, and my nights as well. Though my daughter lives at home yet, she has her own life and I see her almost nearly in passing.

So it was that last night we talked about spending a week together (as we have been planning for some months) following our son's wedding. We have friends coming with us for four days, but following that was to be time spent together. Last night I was informed that after our friends (business friends) leave, he may have to leave again too. He did this to me last year as well. I looked forward to our week together, only to see him bolt as soon as the business guests were departed from our company. I suppose I should be grateful that he at least warned me this year, but it doesn't tamp down the disappointment in any way. Or the feelings that it's all just a bit unfair. Everyone gets his time but me.

I couldn't tell him I was terribly hurt. Again. I think because in saying it out loud it makes the bruise all the more real and all the more painful. Instead I rolled over and tried to sleep, which ended up being a very fitful night for me. I noted he slept soundly.

It's had me thinking all about disappointment today and how people (and I) deal with it. I'm a stuffer. I just take a deep breath and choke back the inevitable tear and push it down, holding in my dismay and dejection. I was raised to never let others see your emotions. Funny, because I'm an emotional person, really. My feelings are usually all over my face, even if I don't say a word. But I'm certainly not a screamer or bitcher/moaner or conversely a "take it in stride" person either. I simply stuff the feelings away and try to move on. Problem is...I don't actually ever move on. And then resentment builds, like a volcano lying dormant waiting for the right time to blow.

So lately I am feeling as if the magma is rising and that the top of the mountain is about to come off. And as I said, I'm no yeller, so it won't be violent - more like the insistent hissing of steam from a bubbling teakettle. I'm really tired of taking a backseat and of being made of "cellophane", as my earlier blog eluded. The confrontation will have to take place soon, and I dearly hate confrontations. What to do....what to do....

First things first - I think I need a nap to sleep on it. Maybe the feelings will be gone when I get up. Or maybe not.

Vacationing

I am overdue for a true vacation. I love to travel, apart from the airline stuff. (What a bother that is these days.!!!) While I have stamina and (a little) youth left, there are places I want to go and things I want to see. I think I need to make a bucket list. Not that I'm kicking off any time soon - I just think everyone needs goals. Paris, Russia, Bejing, the Pyramids, The Parthenon... Hell, I'm excited that I finally saw the St. Louis arch!

In my head I tend to plan from major event to major event or bit of travel. It gives me something to work toward and to look forward to. I don't have any such thing on my horizon right now, apart from my son's wedding in a few weeks. This will be fun, but not a vacation by any means. A vacation is a respite. It's an interlude of fun for fun's sake. It's a refresher of the soul/spirit. It's INTERESTING, for heaven's sake. I don't want to sit on a beach somewhere staring either. I want to SEE places!

The economy being the way it is, this is not the year for big travel. My husband is on an expensive fishing trip, but he's worked his butt off for the last several years and has earned the money and needs the rest, frankly. I hope he comes home renewed and happier, because that is what a vacation should do. I do not fall into his category, but I went into downtown Chicago with cousins and my daughter yesterday. It was fun and SORT OF like being on vacation. We walked around, shopped a bit, had a nice little snack in a little bistro and a delicious dinner at a favorite restaurant. It was hot and steamy walking in the city in nearly 90 degree heat, but I didn't much care (especially after I put my hair up, which I should have to begin with.) It was a get-away, and EVERYONE needs a bit of a get-away sometimes.

I went to Europe on my own two years ago to meet up with my son and his girlfriend, who had been traveling for three months there already. We went to some exotic places (well, for me.) Prague, Budapest, Bratislava, Munich, etc. And we drove in their rented Renault. It was wonderful and one of the best times I have ever had traveling. I have been on fancier trips - like to Maui or on a European Cruise, or even Caribbean cruises, but the pace and company of that trip was great for me. I liked everything about it. I loved being with my son for two weeks. I will treasure memories of that trip forever and hope I get to travel with him again some time. He's a med student so time is not his friend these days. Not much to spare. Still I hold out hope.

If I know one thing about myself, it is that I need to look foward to something. I'm a planner and a list-maker. I need to know what I'll be doing next month and the month after. THis year, after the wedding is done July 31, I really don't have anything on my platter that falls into the category of "looking forward to it." It's bugging me. My daughter is going on a cruise with some cousins in October. I am dying to go with, but I want to go with my husband, who won't take the time or spend the money to go this year. And really he is right, we shouldn't spend the money. But it seems there has to be a way to do something together that doesn't have anything to do with running the business of the family or commerce. I am longing for a vacation and need a change of scenery and a few new experiences. And I need time with him.

I think a vacation does not have to be a huge expense. We have a lake home in Wisconsin. I love being there, but I don't want to sit up there alone. I spend A LOT of time alone. I better get cracking on some plans for the future and some trips to break up my (long) year. My sanity and happiness literally depends upon it.

On Writing

I have been thinking the last few days about writing. I fancy myself somewhat of a writer. I write grant requests for a non-profit. I've written articles and newsletters. I've written whole training manuals over a variety of (mostly banking or managment related) subjects. And for better or worse, I blog. I have a few loose stories floating in my brain that I have thought about working into a novel (or two), but can't seem to get a real solid idea out of any of it. I have written some chapters, but just this week sat down to read them again after an absence of some months.

They aren't good. It's humiliating really. I felt I was being so clever when I wrote the beginning to my big story, but now in rereading I just think it comes off as maybe nearly juvenile or at a minimum, unedited and raw. I've been better (from a writing perspective) than these chapters. At any rate, it's forced me to rethink not only about whether or not I'm cut out to be a writer, but what I maybe want in life in general. (And yes, this is a big topic for me.)

I think I work best in a collaborative environment. Some people are loners who have to do it all themselves. I am better at refining and focusing an idea. I'd make a great editor, probably, even though I don't often edit myself enough. (Who does?) How one gets to BE an editor anywhere I haven't a clue. I just think I'd be good at it.

Is the nature of being a writer to have self-doubt? To wonder if anyone will be interested in what I may have to say in print (or cyberspace) or if even I will be interested after a time? Certainly in rereading my text I have come to see how raw the work is and that I'm in need of a genuine tight idea to go with my spectacular setting. And how do people come up with names for characters or places anyway? Maybe I should join a writing club or something? Is there such a thing? I'll have to Google/Bing around looking.

But back to the collaboration thing. When I read books there are always long lists of thank yous from the authors to a myriad of people in their life who helped them (A) finish the work in the first place and (B) give advice or actually read and edit the work. Does that count as collaboration? I think I need a team, really. I work better on a team.

When my kids were young I used to make up bedtime stories off the top of my head. We (they) called them "Stories without a book". And they were usually of the ilk of campfire type stuff - mildly scary or fantastical. Its funny, but my 22 year old daughter still remembers some story I told them about a place I called "Diamond Lake," and she had to be maybe 5 when I wove that yarn. Obviously I can make up stuff when I have to. How is it when I have to WRITE it though, it's harder? Is it the commitment to the words? Commitment to the work?

I read alot about authors/writers. They all seem like driven individuals who are nearly compelled to write - like they HAVE to do it. They are letter writers and bloggers and twitterers and diarists. I'm not that way. Truthfully there isn't anything I feel that strongly about - that I HAVE to do it or I'll be sad, or feel "less than" or feel something is hugely missing for me. What does that say for me? I think perhaps I am more in love with the idea of being an author than acually becomming one for real. Like everything else, it's gonna take a lot of work. It's about making a decision. And I've been putting a few off for a good long while....

So writer's block be damned, I want to work on that story. I know I can do it. I just have to carve the time out (and what else do I have, really...?) and get to work. Hatchet Island, here I come. Now what exactly WILL be out there? Hmmmmmmmm.

Cellophane

I have had the song "Mr. Cellophane" in my head all day today. The one from the musical "Chicago". It came up this morning in a conversation I was having with my therapist, actually. I was trying to describe how I feel a good deal of the time to my family and friends and this is what popped into my mind. All day I haven't been able to shake the song (my son used to call this a "brain worm". )


It's not really the catchy tune that hooked me, but rather the feeling of the song and some of the lyrics. "...oh you can see right through me..." When I am a little overwrought and feeling like I am likely the last person on everyone around me's list, I feel like cellophane. You know it's there, but you can see right through it as if it weren't. Lately I'm humming this tune more than I would like.


I used to have more people in my life to whom I could turn for a good ear, a little advice and little (less or more) judgement. It's at these times I miss Kate most of all, God rest her. She always seems to be sympathetic and encouraging and allowed me to vent, as we all need to do from time to time. I don't think I have had that luxury in my life for some time now - that is, the comfort and security with another individual to let it out and vent with no fear. Not that I just want a bitch session with a friend - I'm really talking about something deeper than just moaning about kids, husbands, pets and families.


It is about being seen. I'm rather tired of not being truly seen. I'm REALLY tired of being the one everyone calls to fix their problems but not really having anyone who can help fix mine. (Not sure my issues are actually fixable - that's something to chew on...hmmm). My daughter pops in my office or room nearly daily with "just a little favor" she needs, or calls me on the phone at the last minute to find something, do something or go somewhere for her. Frustrating because with a little planning she needn't rely on me. Kind of like my mother-in-law, whose philosphy seems to have been "why do it when someone can do it for me" for the last 30 or more years. Or my son, who ignores a text message from me asking when he may be available to help me with my garden - about an hour's worth of work I cannot do alone, but when he needs a little cash it's an easy call to Mom.


So today it was suggested to me that others may not know what I need because I don't vocalize my needs. I did think on this alot today, and have realized that this is by-and-large the truth. I have my moments of frustration or anger when I'll just blow up, but I'm more or less a calm person, so this doesn't happen very often. So it got me thinking, how in the world should I or can I tell those around me what I need for my own happiness. Seems selfish to me to ask, but there it is, I guess I will have to, otherwise, they will continue to "see right through me". The old adage, "Ask and Ye Shall Receive."

It's the asking that's the hard part of course. Everyone carrys around their own sack of "stuff". The worries, troubles, doubts, fears, personal histories, and experiences that make us individual. Some people cannot look past their own stuff to others' stuff, as much as we may almost want to WILL it so. It's that measure of not wanting to feel like cellophane, but rather having someone express a care or concern without having to ask. Maybe that's unrealistic? I don't know. I really don't. I have a hard time expressing my troubles - especially to those really closest to me because I don't want to burden any of them further, and this is particularly so for my hard-working husband.

So it seems its a bit back to the rock and hard place for me. I AM fed up with being taken advantage of, and being "looked right through" by my family especially, but by the same token, I don't want to add a log to the fire and create more of a fuss than is needed. It will just boil down to communication of course, and being (somewhat) a writer you'd think I'd have this covered, but nothing is further from the truth, really. It's a WHOLE lot easier to talk to cyberspace than face to face with a human being. It's why kids get so worked up about Facebook comments and cyber-bullying. Half of it wouldn't go on if they had to be said aloud to be heard. But I digress...

I have to work on this communication thing. My husband comes home from a fishing trip tomorrow. I haven't really had time to sit and talk with him for more than 10 minutes in probably a month or more. I guess there's no time like the present. IN the meantimes...."Cellophane, Mrs. Cellophane...Oh you can look right through me...."





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