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Step by Step

I’m tired.

I’ve been writing this blog in my head all week.  I just can’t seem to find a theme I can stick with for more than a paragraph or two.  Or, if I’m honest with myself, a sentence or two.

Cynthia Wallin in Memoriam

Regular readers will know a friend of mine passed away and her memorial service was this last weekend.  I’m in the second or third tier of mourners.  Tier one – the decision makers and those truly being overwhelmed with waves of grief.  Tier two – the organizers.  The ones asking the decision makers what they want and striving to make it happen.  The people whose grief makes them prickly, rude, short-tempered, unclear and perfectly sure they have everything in line because keeping things in line is how they cope.  Tier three – the support system for the first two tiers.  The listeners.  The worker bees.  The one’s who are distant enough to put off their mourning until it’s convenient (at least a little more effectively).

I helped prep and man the buffet table. Yes, I have trays… and coolers.

Having the memorial made it real.  That’s part of the point of course.  Being gifted some mementos makes it real and personal (which it has always been, but denial is so convenient).  Having nothing left to “get done” means there is no longer an excuse to put off the emotional response.

Cancer Sucks

I’m sure the death certificate doesn’t say my friend died of cancer.  But it is certainly the undiagnosed and untreated cancer that caused the heart failure.

I’m grateful my friend didn’t die alone at home, but had people around her who cared about her.

I’m grateful my friend went quickly, all at once, rather than having to slowly and painfully waste away.

I’m grateful her very elderly mother dared to get on a plane and put herself in the hands of a community of her daughter’s friends whom she had never met.

I’m grateful for the presence of people who spoke about areas of my friend’s life that I wasn’t privy to.

One of the many, many things Cynthia made by hand were candles. We all took some home to burn in her honor.

I’m angry that a cancer that large and impactful goes undiagnosed for so long.  I’m angry that the complaints of a large woman (both exceptionally tall and not willowy) are dismissed by our medical community as always being about weight.  I’m upset that no matter how good the insurance you’ve got, unless you know what to ask for medicine is practiced according to the insurance company guidelines rather than actual medical need.

I had breakfast today at Gilda’s Club.  It’s a sort of monthly social event.  At Gilda’s I am surrounded by people living with cancer, many of whom know they have no hope of a cure.  I am always buoyed up by the spirit of care and acceptance.  I am reminded that there is pain and sorrow, but also hope and joy.

I met Gayle at Gilda’s Club about 4 years ago. She continues to smile through her cancer journey.

I’m putting one foot in front of the other.  Step by step.

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Catching Up

Another family photo at Gilda's A lot has changed in 3 years!

Another family photo at Gilda’s A lot has changed in 3 years!

With the long days and hot nights I’m not sleeping well.  I feel like I’m spending my time trying to catch-up with myself.  On the days when I’m busy I’m exhausted.  On the days when I do nothing I find myself dozing in my chair.

It may seem counter intuitive given my state of being, but I’ve been looking for a part-time job.  The latest news on the construction front is that the bank is worried about my income to debt ratio.  That’s a good thing I suppose, to keep me from drowning in debt.  On the other hand the work really needs to be done and I don’t have the money to do it.  I figure at the glacial rate this project is moving along I may be a couple of months into a new job – enough for it to count – before everything else (my outstanding debt for instance) is settled to the banks satisfaction.

Cardio drumming was fun enough to attract some of the kids

Cardio drumming was fun enough to attract some of the kids

It was Friends and Family weekend at Gilda’s club.  Orion and I went for our 3rd year in a row.  This year Orion has acquired a new drum and he was determined to bring it and play it.  We did cardio drumming.  That was kind of fun.  Drumming along to popular music on exercise balls in buckets.  Moving arms and legs.  Kind of like Taiko drumming for middle-aged women.

We also did the family drumming.  That’s a slightly more traditional drum jam.  Making connections to rhythms and a group apparently makes a difference in health and healing.  Who knew drumming could be so therapeutic?  Orion loved it.

Waiting for folks to arrive and the session to start.

Waiting for folks to arrive and the session to start.

We got to visit with friends, old and new.  We had a visit from a fairy (it was a hot day and she was taking a break from the fairy garden).  We had a lovely walk there and back.  And when we got home I was (again) exhausted.

Maybe I need to drink more water.

Visiting with a fairy

Visiting with a fairy

Critical Grumpy-pants

It’s Monday.  I wrote a blog.  I don’t like it. (Critical grumpy-pants!)  It’s not like I didn’t have a good week!  We volunteered at Gilda’s Golf benefit.  We went to my friend Karen Lund’s book launch party at the Como Park Conservatory and Japanese Gardens.  We saw Inside Out at the Cinema Grill.  I performed 3 rituals.   Maybe I’m just tired.  Here are some photos.

 

I helped make the prize board

I helped make the prize board

Great venue

Great venue

We greeted folks as they came in for the banquet

We greeted folks as they came in for the banquet

I've always loved this beautiful old building

I’ve always loved this beautiful old building

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The Japanese Gardens are delightful

The Japanese Gardens are delightful

You have to have a reservation for the teahouse, but Orion and I did a selfie at the gate

You have to have a reservation for the teahouse, but Orion and I did a selfie at the gate

The lilies were blooming

The lilies were blooming

Orion couldn't go on ALL of the path, but he could get to all the good spots

Orion couldn’t go on ALL of the path, but he could get to all the good spots

 

Happy Birthday Gilda

Outdoor space at Gilda's Club Twin Cities

Outdoor space at Gilda’s Club Twin Cities

What a difference a year makes!  Last year at this time I was just starting out as a volunteer at the newly opened Gilda’s Club Twin Cities.  I was blogging about my to-do list as I prepared for surgery.

This is where the Gilda Greeters sit welcoming folks into the clubhouse.  It's a perfect volunteer spot for me!

This is where the Gilda Greeters sit welcoming folks into the clubhouse. It’s a perfect volunteer spot for me!

Gilda’s Club, dedicated to the memory of Gilda Radner, is a welcoming community of support for anyone living with cancer, along with their families and friends.  It’s a place where everyone is welcome, where no one faces cancer alone.

This year when we went to the Gilda’s Club Friends and Family Birthday celebration I participated in most of the events.  Orion and I met some new friends, visited with old friends and enjoyed the Clubhouse atmosphere.  I spent much of the day on my feet, and didn’t think anything of it.

Our "Gilda Fairy" maintains the fairy garden where members can send notes to those who have passed.

Our “Gilda Fairy” maintains the fairy garden where members can send notes to those who have passed.

 

The Clubhouse is really settling into itself.  The gardens continue to expand, making lovely healing and meditative spots to just sit and enjoy the sunshine.  There is the fairy garden, the new waterfall and picnic area (the first photo was taken there) and the healing fountain and gardens.

Orion at the healing fountain with the gardens behind

Orion at the healing fountain with the gardens behind

Last year the healing fountain was dedicated and Orion and I made stones for people we knew who had dealt with cancer.  He made one for my Mom and I made some for friends I’ve lost to this pervasive disease.  This year, unfortunately, there were more stones.  Orion made one for me!

Our helpers in the kitchen often bring family along.

Our helpers in the kitchen often bring family along.

Inside the kitchen is often in use for classes or just the staff throwing something together for anyone who drops in.  I decorated cupcakes and made Orion eat one, poor thing.  I’ve attended several events in the kitchen this past year.  (What can I say, if there’s food I’m more likely to show up – even now!)

Orion did this one by himself.

Orion did this one by himself.

The Expressive Arts Studio often displays projects members have created.  That’s where we colored our stones for this year.  It’s a great place to work out feelings through art.  I’ve taken the Homemade Card Making class and had a lot of fun.

We were the first ones to arrive at drumming

We were the first ones to arrive at drumming

There was a lot of vibrational healing going on.  We got to do a gong meditation in the Mind Body Studio.    Orion and I also did some drumming in the Community Room.  He’s pretty excited to show off his new rhythms the next time he gets to a drumming circle.

We participated in some short improvisation workshops put on by the folks from Brave New Workshop. Jenni Lilledahl, one of the owners of Brave New Workshop is also one of the founders of Gilda’s Club Twin Cities.  It’s great to have their support.  The workshops were a lot of fun.

Here we are in 2014

Here we are in 2014

The biggest change though is when I compare the family portrait Orion and I took last year to the one we took this year.  My daughter was talking to old friends, catching up.  When they asked about me she told them I was genuinely happy.  Maybe I am.  I’m certainly grateful that so much has changed.

and here we are this year.  What a difference a year makes!

and here we are this year. What a difference a year makes!

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I captioned last years blog with our "photo booth" pictures.  These year we got a little sillier

I captioned last years blog with our “photo booth” pictures. These year we got a little sillier

 

 

A Big Wrench

800px-MonkeyWrenchAs Burns said (after his language was updated) “The best laid plans of mice and men often go astray.”    According to Murphy, “Anything that can go wrong, will go wrong.”   One way or the other, as the idiom goes, “someone has thrown a wrench in the works.”

I really wanted to spend last weekend in California at Pantheacon.  I was scheduled as a presenter and I was really excited about the workshop I planned.  It was about energy management, specifically in ritual settings, called “Sitting down or sitting out”.  Maybe the universe thought I needed a refresher course first!

It has been a busy month with lots of medical appointments.  My regular readers have heard me talk about dealing with a DVT (blood clot) and blood thinners and anemia.  Every single appointment I’ve had since the beginning of the year has started with the statement, “You need to know I’m getting on a plane February 13th.”

Orion taking me to the doctor.  That's the hospital in the background.

Orion taking me to the doctor. That’s the hospital in the background.

I didn’t get on the plane.  Instead I got scheduled for surgery.  In fact, if you’re reading this on President’s Day Monday, I’m certainly at the hospital and may be “under the knife” even now.  Scheduled publishing is one of those handy WordPress features.

The truth of the matter is that I’ve known for several weeks that surgery was the plan.  I just insisted that I get the California trip out of the way first.  In looking for ways to address the anemia I was referred to a Gynecologist who, as part of a standard exam, did a biopsy.  It turns out that I have endometrial cancer.

It’s been 24 years (to the MONTH!) since the last time someone told me I had cancer.  Back then it was colon cancer and I was relieved to get the news that being sick wasn’t just in my head.  There was a little bit of relief this time as well.  My first thought was that my PAP smear was off, and it was cervical cancer – which is really nasty.   Endometrial cancer tends to stay localized.  Most of the time it’s an easy fix.  Have a hysterectomy and you’re good to go.

Even the idea of a hysterectomy is kind of a relief.  I’ve been experiencing peri-menapausal symptoms for a very long time.  I have ZERO interest in more children.  I’m a lousy candidate, medically, for any kind of pregnancy.  Happy to be done with all of that.

In the ER getting fluids and told I can't go to California.  Trying to look on the bright side.

In the ER getting fluids and told I can’t go to California. Trying to look on the bright side.

The concern is that it’s a second occurrence of cancer.  The concern is that this cancer doesn’t explain the blood clot.  The concern is that maybe I’m one of those people who is prone to getting clots and cancers.  Unless you’re me, in which case the concern is missing the trip to Pantheacon.

I’m not a great candidate for surgery either.  This will be my (count them) sixth abdominal surgery.  The last one was the bariatric surgery less than a year ago.  The nutritional complications from both the bariatric surgery and the cancer can impact recovery time.  The scar tissue could prevent the procedure from being done laparoscopically – significantly impacting recovery.  The blood thinners and anemia add additional complications.

So please send warm thoughts and prayers for an easy surgery and rapid recovery.  I’ll add an update a little later in the week so you’ll know how I’m doing.   I may take a bit of a blogging break while I process all of this and try and get a handle on another version of “my new life.”

And if you’re interested in what I’m missing, here are links to the blogs I’ve written about Pantheacon and flying to California in years past.

https://lisaspiral.wordpress.com/2014/02/24/pantheacon-2014/https://lisaspiral.wordpress.com/2014/02/17/california-2/https://lisaspiral.wordpress.com/2013/02/18/california/

 

Home from the hospital.  Everything went really well.  They managed to do the surgery both laproscopically and robotically!  Got everything and no surprises.  Now it’s recovery.   I hurt and I’m really tired, but I’m glad to have that part behind me.  Thanks for the well wishes!

Interlude

I seem to be stuck in “whiney” mode and I don’t like it.  So my thoughts for today are consciously choosing to look a little more positively on the world and to be grateful.

I’ve been really busy.  Getting the DVT diagnosis doubled my appointments last week.   But I have a great team.  All of the medical personal in my life (the one’s I keep around anyway) tend to be exceptional.  They listen, they talk straight to me about risks and advantages and choices, and they seem to “get” the circumstances of my crazy life.

Treating a blood clot seems to work a lot like faith.  Once they find it, they put you on meds and don’t bother to really look again.  The doctors trust that the blood thinners will eventually dissolve the clot and in the meantime reduce the risks of complications.  The only evidence it’s working is a reduction in swelling and pain.  I’m grateful that I’ve got a team I can trust.

One of the things that’s come up is that it’s time to start a serious exercise program.  (Something more than ‘be more active’.)   I actually bought a swimsuit.  I have no idea how long it will fit, but the chances of my actually going to the pool have just increased significantly.  Not today of course, but my goal is to get there sometime this week.  Once I go, it will be easier to go again.  I’m really lucky to have those resources available to me and it’s high time I took advantage of them!

I wasn't sure the delivery truck and metro mobility wouldn't drive at the same time!

I wasn’t sure the delivery truck and metro mobility wouldn’t drive at the same time!

I still have swelling in my leg so it’s a balancing act between moving and elevating the leg.  I acquired a brand new recliner to help with that.  I’m not sure why I thought Monday morning between 7-9am would be a good delivery time.  It will be easier on my back than trying to lounge on the couch with my leg up!  Again, I am grateful to be able to do this, and I’m grateful for the recliner that died to make room for the new one as well.

In the land of debatable for my physical well-being, but phenomenal for the attitude adjustment is Karina.  She’s also been “in a mood” and so she called me and took me out to the movies.  We saw Mockingjay.  When she was a snotty teenager, I read the books and literally MADE her go to see the first movie.  She was not happy, didn’t want to, wasn’t going to like it.  She came home from the movie and read all three books and has waited in anticipation for each movie since.  I’m grateful that she took me.  She’s grateful that I introduced her to the series.   It’s nice to know I did something right.

I think I’ll start the week with Monday morning coffee and breakfast at Gilda’s Club

Gilda's Club Twin Cities (on a slow day)  That kitchen back there is divine!

Gilda’s Club Twin Cities (on a slow day) That kitchen back there is divine!

That’s another thing I’m grateful for.  The people are fabulous, the services the club provides powerful and necessary.  Being able to be a volunteer there takes me out of myself and puts me in service.  It also means I have the opportunity to take advantage of the wonderful programing.  Just walking in the red door is enough to create an attitude adjustment!

Out of My Head

I’ve been trying to get out of my head all week.  Not an easy task apparently.  Missing the cat hasn’t helped.  Rainy days (day after day after day) hasn’t helped.  Not sleeping (the rain doesn’t help the background pain at all) doesn’t help.  I know I did some things last week.  I maybe even did some cool and important things last week.  I just don’t remember much except the grey.

It occurred to me, in a flash of sunlight, how important the little things are.    I watered the plants.

taken from my car window as I pulled in.

taken from my car window as I pulled in.

I fed the feral cat that took refuge from the rain in my garage.  (No worries, he was gone as soon as the sun came out.) I took Orion to Trader Joe’s.

You have to understand that Friday afternoon our Trader Joe’s does wine tasting.  Most of the time the wine tasting host is a lovely Italian man named Lorenzo.  He teases Orion in Italian and Orion adores him (so of course I do too.)   What’s not to like about that little excursion.  I get groceries, wine, entertainment, a happy Orion and flirting with an Italian.  Life starts looking up.

The other thing I know that gets me out of my own head is helping others.  A Gilda’s Club just opened in Minneapolis (practically in my back yard.)  Some of you will remember Gilda Radner from Saturday Night Live.  When she was dying of breast cancer she found a club for women like herself to just hang out and support each other.  She left them a legacy and they became Gilda’s Clubs.  They’re scattered across the united states and most of them are open and welcoming to anyone of any age who’s dealing with cancer, supporting someone with cancer, or survived having cancer.

I am a cancer survivor myself.  I had colon cancer in my 20’s.  My Mom is a breast cancer survivor.  My cousin is just clear of throat cancer.  There are members of the family who’ve dealt with prostate cancer, pancreatic cancer and lung cancer.  My best friend from college died of  Kaposi sarcoma, the skin cancer that is associated with HIV/Aids.  (It’s what Tom Hanks character had in Philadelphia.)  I easily qualify as a member of the club no one wants to belong to.

Since they had their grand opening a week ago I figured I’d stick my head in on my rounds and check it out.  It’s a beautiful building, well designed and appointed.  I sat in on a cooking/nutrition class that was very well done.  I even got a recipe.  I took a tour and saw all their group rooms, the yoga studio, the art room, the teen center and the children’s corner.  They may be understaffed and marginally attended now, but they have the facility to really take off in a very short time.  I put my name in the pool as a volunteer for the front desk.  Hey, it’s walking distance from my house.

Karina's new baby

Karina’s new baby

Maybe I’ve started a new adventure.  Maybe I’ve come full circle.  It’s not as extreme as Karina’s solution.   I’ve become a doggie Grandma to Minnie Mouse.   I’m not stuck in my head anymore.

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