SAD and the tumor

People must be interested in my travails because there are so many hits on this blog.  I will soon have reached 50,000 hits.

Anyone who reads this blog knows I suffer every winter from Seasonal Affective Disorder which is why I usually plan a southern storytelling tour for January and February.  This year it should have been Hawaii in February but I had to cancel that when the brain tumor decreed I would not be able to drive once I got to Kauai.  Another year, perhaps.

So this week I find myself with the double whammy of tumor and SAD.  Except I am finding them much the same.  In both cases, I sleep for hours.  The only remedy seems to be sunshine and lots of it.

Today, Gary took me out for an airing.  We went to the big Fox River Mall so he could find replacement filters for our humidifiers.

I got to walking around and found myself at Payless shoes.  I bought two new pairs of sports shoes.  My old ones were wearing out in the heel areas, leaving me with very sore feet.   Now I can walk again.  I plan on going to more malls in this horrendous cold to get the exercise I need. That shouldn't cause the tumor any great problems.

Afterward, we drove around country areas.  The sun shone on the snow giving me the light I needed.

Tonight I am feeling better.   I am still sleeping a  great deal, but I am getting a few things done.  I should have my taxes done by tomorrow night.   Plus I am now back to cooking nutritional meals.  No more take outs for us. It was spaghetti and meatballs tonight.

On the 4th of February we meet with my brain doctor to review all the tests to see how we proceed on the surgery.

Today, Gary showed up in my office with an electric drill, suggesting he go in and take the tumor out. He was kidding, but it sounded good to me.  However, when I mentioned this on Facebook, our friends Brad and Merrilee suggested he had the wrong bit.  Humor continues to be part of our life.

In another month, the flowers will be blooming on the south side of my house.  One way or another, I will begin to feel better.

NIH

Chris came to get me early for a drive to Froedert Hospital in Milwaukee where I would take what should be the final test before we decide how to proceed on the brain tumor.  

The drive south and the day at the hospital was an opportunity for me to connect with my son and find out how things were going with his job.   As it turned out, the AMR test was delayed and we couldn't get in earlier even though more snow was about to hit Milwaukee.  I'd assumed everyone would want to leave early but that was not to be. 

I spent hours with the technicians and enjoyed it.  Ever curious, I had so many questions about the testing, especially when I found out that the National Institute of Health is involved.  The technicians were doing experiments which should help in diagnosing and treating brain tumors.  I would be doing verbal and visual testing that hasn't been done before.  

The advantage for me is that I won't have to pay for some of the newer testing plus plus I am actually receiving an hourly stipend for it.  And of course, I like the idea of helping others, too.

I was in the machine for hours, asked questions that most of the time I only had to answer in my mind.  They wanted to see the actual information coursing through my brain cells, I guess. 

At the same time, Chris was working at work issues, using the wi fi in the hospital. 

For some time, I was gazing up at photos at what could only be scenes from the Pacific Crest Trail while I listened to classical music.  My choice was Beethoven and it seemed the selections were mostly from the Ken Burns documentary on Frank Lloyd Wright.  This was so soothing, I am now wondering if Burns ever released a sound track.   At the same time, the machine was vibrating and massaging my back.  I came away with a full appreciation of science!

So somewhere in Washington, DC the NIH will have the photos of the brain of one Colleen Sutherland.

I wish I could see it.

Depression

Gary and I are slowly woking out my problem with Seasonal Depression.  He took me for a ride this morning in the sunshine.  We found lots of snow bu the sun reflected off it, giving me the brightness I required. We looked all over for birds.  There were crows of course. At th Shawano dam, we found hundreds of Canada geese and mallards.   And on the way home we found dozens of ring necked pheasants.  No it isn't spring, but birds go a long way to help  me to spring.

Earlier Lori had a spring bouquet delivered.

Gary went of tonight to tend to Spooky, his sister's camp.  He'll go to a meeting and stop for hardware at Menards.  he will be re-doing things here at the house while I am having tests done for the tumor in Milwaukee tomorrow.

And so we're getting what we crave....time apart.  By Saturday, we'll be good friends again.   It wasn't a southern tour or a trip to Hawaii, but we take what we get.

Frustrations

Usually at this time of year, I go off on tour, leaving Gary behind.  It has always been a good thing.  We need time apart a few times a year.

However, this time, I am held back by a brain tumor.  With almost no peripheral vision, I am barred from driving a car.  Gary has felt he needs to take care of me. But now I have doubts about that.  Should something go wrong, Chris is only half an hour a way, the ambulance ten.  There's  a land phone in absolutely every room plus I wander around with cell phone in hand.

I will be gone with Chris on Friday as he takes me to Milwaukee for more testing.  I hope that gives Gary some release.

Part of it is that with my brain not fully functional, Gary has taken to questioning my decisions.  I am perfectly capable of following legal matters, but Gary kept telling m to follow the attorney, even though the will he had drawn up was virtually identical to one I had drawn up years ago.  I only have one heir which makes it simple. I also had drawn up power of attorney for health issues years ago.  I know exactly when I want the feeding tubes removed and so on.

Then there was the question of a mortgage for money Gary lent me.  I worked as an escrow officer in Chicago and clearly know about promissory notes and mortgages.  There was nothing Gary could explain to me.  He was frustrated throughout our visit with the attorney yesterday.

Then today I insisted on going to the bank to deposit some money to cover the checks I wrote out yesterday for filing fees. It took longer than Gary would like.  And so it went, even to the grocery store where he wondered why I needed eggs and milk.  Well, I have cooking plans.

He has to get over the notion that having a tumor hasn't completely removed my brain.

But I know our real problem is way too much togetherness.  

Gary has been a prince about taking care of me, but now he needs a break.

In another week or so, all this will be over and we can move on with our usual lives.

Moing On Again

By Friday, I must be in Milwaukee or the final test before surgery.  There is so much to do before then, so Gary and I have been getting busy.

Today, we shopped for supplies.  We now have  standing calendar o help keep all of the appointments straight.

Then we went to see our attorney who had all the wills written, Gary's and mine.  I don't expect to die on the operating table, bu I've always thought we should have wills and this was the excuse.

Then Chris needed power of attorney on health issues.  I had to think about my instructions.  When should he pull the plug?  Organ donations?  Nursing home or not.  Decisions, decisions about what to do with my body.
Then there were financial forms.  Gary deserves money should this house be sold since he contributes so much.  More form.  It was an afternoon of thinking things through.

The attorney suggested I write my obit and funeral instructions, too.  More projects.


Then when we came home, mail that requires my attention.  I now have everything I need o get my taxes done so that is tomorrow's job.  There are some bills I have to pay though not many.  I've kept on top of things that way.

I've been assigned  a caseworker for Medicaid but there seems to be confusion about that since it refers o children and food stamps.  I'll have to get that straightened out.

Good thing here are no meetings or tests tomorrow.  It looks like I will have to spend the day on paperwork.

I want my desk clear by Friday.  I have two days

Moving Forward - Money

As Gary and I move forward on this tumor thing, we realize we could go broke, so today we worked on getting it all together.  Face it, my friends couldn't have enough bake sales to raise the money.

This morning we went to see about heat assistance.  I didn't think we would need it and so far have managed the energy bills, but the Arctic Vortex came down and it was one bill too many.  We had wonderful service from Energy Assistance.  We'll get through the winter just fine. An old storytelling friend, Chuck Larkin, used to work on that program when he worked for the federal government.  I though of his enthusiasm for the program while we waited.  In that spirit, I entertained a child waiting with his mother and was pleased I could remember all the words to 'My Brother Eats Bugs".  Perhaps my brain is working after all.

We've had a call from our brain doctor and will have to meet with him tomorrow.  On Friday, more testing in Milwaukee.

Before that, I need to have a phone conference about a supplement to Medicare  through the Affordable Care Act.  Our President may be saving my life.

Of course that makes me on of Romney's "takers" but I don't buy up companies and fire people.  I just sing songs and tell stories to children.

I think there is some value in that.

Lists and planning for the future

"You cannot run away from weakness; you must some time fight it out or perish; and if that be so, why not now, and where you stand?"
Robert Louis Stevenson

Robert Louis Stevenson was dying most of his life, but he kept on writing anyhow, giving us Treasure Island and Kidnapped.  

So I keep on plugging away, too.

I think the tumor is shrinking, probably because of the steroids, I certainly think my typing is improving and I can now carry on conversations without slurring my words.  However,the tumor still will have to be removed eventually.  I have heard of outstanding results. 

So I take lots of naps, get some headaches, but I move on. 

One thing I started doing this morning was to start a journal in cursive to push at the peripheral edges of my work.  Eventually, I want to drive a car again.  We continue to go for testing to see what is happening. 

Mostly, I look at my constant lists of things I want to accomplish and work on them. Some are simply like clearing he bulletin board today.  

Others are lists that aim toward spring.  Today I planted more forced tulips and daffodils in pots.  There are already shoots coming up.  Then I asked Gary to set up shelves so I could start some tomato plants from seeds.  He thinks that is crazy, but it makes me happy so why not?  

I set up a bucket list of things I want o accomplish before I kick the bucket.  That includes at least four more books.   

I want to finish my imaginary trip around the world.  I am currently approaching Paris.  Some 5,000 miles more and I will be back in the USA.  Today, Gary took me shopping so I could walk around some big stores, eventually walking two miles.  

So I am often tired, but I fight where I stand.