What do you do when you have (maybe) one more year?

****Warning…this is a major downer…a big grief and pain trigger…there is no resolution yet…I am processing what is happening in my life and, since misery loves company, I am sharing 6 pages of bleakness.  What are friends for, right?****

So in September of 1984 I met a wonderful man…this guy, who was perpetually late and had a distinctive walk with keys on his belt so we could hear him coming down the ramp to the snack bar where this strange group of college students gathered (“Look, It’s Fred!” became our call in unison), and who intuited that the best way to get this smart assed introvert out of the shadows was to challenge her, and who helped chase off an awful dorm roommate, is the man who introduced me to Steeley Span, the SCA, Jethro Tull, and the Craft.  Fred was a blacksmith, a stocky and strong man, a member of the SCA and the first Neopagan I ever met.  At the time he had shoulder length red hair and a full beard.  He had the brightest blue eyes and a wicked grin.  I still remember my first country bumpkin good girl thought was (simultaneously) ‘Hmmm…that’s interesting! No it’s NOT’

Well there apparently was something.  We have been friends for 32 years in 2016 and lovers for 25 years and partners in life for 21 years.  Fred loaned me a copy of circle network news, bought me my first Green Egg magazine, introduced me to music and concepts and people and festivals.  Fred insisted that I go to the local Bulletin Board System (cyberspace) coffee (lovingly dubbed the Saturday Night Get a Life Club) where I met several of the people who would become my students and lifelong friends.  He encouraged me to go to Aradia’s Arcane for the discussion groups and classes where I met my first High Priest and other people who would become students, friends, and connections in the craft.  Where I am today is mostly to his credit.  He has been a resource, teacher, encourager, comfort and mostly a very deep love in my life.

In 2003, Fred went in for what we thought would be a relatively minor surgery but turned out to be a cancerous appendix.  He had chemotherapy and other testing and for 10 years all was well.  Then in October 2012, one of my best friends and (now) High Priest asked me what was wrong with Fred.  I actually admitted to myself that I had noticed that something wasn’t right.  He just wasn’t acting right.  My instinct was that the cancer was back.

In February of 2013, Fred finally got around to talking to me about it and explained that the symptoms he had had in 2002-3 were back.  He delayed doing anything about it until December 9th of 2013.  After 4 hrs of surgery, the surgeons came out and talked to me.  Yes, the cancer was back.  After the surgery and time in the hospital, he spent most of 2014 recuperating from the surgery.  In early 2015, we went to see an oncologist, finally…

Now, I am a therapist.  I am trained in, as well as having a natural talent for, reading body language and expressions.  I am good at reading between the lines.  So the following description rang very loudly even though words were relatively quiet.

We were in the exam room.  I could hear the doctor with another patient in the next room.  He was upbeat, laughing and joking.  Things were going well for this person.  He came out into the hall and I heard him pick up the chart.  The next thing I heard was a deep sigh.  He enters the room and assumes what I have been calling “The Undertaker Stance”…head tilted slightly to the side, hands folded in front of him, look of sympathy and concern on his face.  “How are you doing, Fred?” he asked gently.

During this visit, Fred asked in general, how much time he was looking at.  Of course they couldn’t give specifics or guarantees but at that time he was told, on average, 2-3 yrs….of course, my mind was asking 2-3 yrs from when the symptoms returned or from the surgery or from today???

It looks like it was from the return of the symptoms…because it has been steadily down hill from there.  He has been on chemo since March…has had a steadily decreasing appetite, increased nausea, and decreased resources-physically speaking.  In November, he had a blood clot develop in his leg which still has not been resolved.  On December 3rd I took him to the hospital with a 104.9 temperature.  He was septic.  After a week in the hospital, he came home.  Overall he seems fine… low energy and low appetite but relatively healthy otherwise…but I had the opportunity to put lotion on his back and legs recently…it is not encouraging.  What once were powerful shoulders of a blacksmith and strong biceps that I could barely circle with both of my hands are now quite thin.  This is a thing that I have watched before…my father and grandfather…especially my grandfather, who was a big man…wasted away to nothing with cancer.

He isn’t giving up.  He has not found his paperwork and gotten affairs in order or anything like that.  Maybe I am being paranoid or defeatist.  But my instinct tells me that he will probably cross the veil sometime this year.

With this in mind, I went looking for information about how to handle this year.  I mean, someone has to have written something, right?  I found heartwarming and tear jerking stories about a town that gave a dying child one last Christmas in October.  I found several things about dying parents sharing a last holiday with their young children…but I didn’t find anything about what to do when you are relatively certain that you have one more year with someone.

So I guess I will have to write it.  We just passed Yule/Christmas…I am sure I screwed it up…but he was happy to see my daughter happy with her gift.  I gave him what he said he wanted and I love the present he got for me…and after the kids left, we had a quiet evening and a long peaceful night with a lovely cuddle this morning.  I brought him home made ravioli and sauce from the Yule ritual I attended this afternoon and we are watching foreign language tv and mythbusters marathon.  The cat is napping on the back of the couch and I guess all is currently right with the world…or as right as it is going to be.

Here I am, 5 months later, writing again.  January through March were relatively quiet.  Then they started a new Chemo.  We went to the university for a consult.  Turns out there were only 2 more things to try.  So we began what was supposed to be an every other week treatment regimen.  The first 24 hrs were ok…then the pain started…he writhed in pain until I could finally get him to the clinic to get the pump off.  After that he rebounded relatively quickly.  He doesn’t remember the weekend much at all.  I do.

After two weeks they looked at his lab results and his white cell count was too low to do treatment so they put it off a week.  This time the doctor said to take the pain medication he had plus added  more nausea medication.  Again, he was fine until Saturday afternoon this time.  The rest of the weekend I pretty much snowed him and he didn’t feel much pain.  After the pump came off, he was fine until Sunday evening then a little pain and discomfort so another pain pill.  Monday morning, he was pretty confused & foggy…he still insisted on going to work but actually only made it about 5 miles before realizing that wasn’t a good idea.  Thankfully, he turned around and came home.

So another 3 weeks go by…to give him time to get stronger.  (By the way, in February of 2015 he was 170 lbs…at this visit he weighed in at 147)  He does the treatment and is ok…not stellar but ok…until about 2 on Saturday afternoon when the pain & nausea kicked in.  Rotated nausea meds and pain pills til about 1 am then I went to bed…he was fine.  I got up at 7 and did my routine but he was in the bathroom.  A half hour later I checked on him because he was still in there.  He came out of the bathroom completely stripped…which he hasn’t done since December of 2013…and got into bed.  A little while later he scurried back to the bathroom and I realized he had also removed the colostomy bag.  We got that dealt with and he wanted to rest so back to bed for a bit.

Then it was time to get ready to get the pump off.  I get him in sweats and socks and a shirt and try to get him out to the truck.  Nope…ended up fighting with him for 2 hrs about whether or not he was dressed.  A 5’8″, 140 lb (they weighed him that day) toddler.  Finally get through to him that something isn’t right when i tell him he’s acting like he had a stroke.

We made it to the clinic before they closed and his blood pressure was very low.  The nurse said to take him to the ER.  And he was there for 4 days.  In the ER I got to witness the callousness and impatience of the doctors…and recognized how little they actually listen to anything being said.  He was unable to sign his name, or communicate hardly anything.  He was like this until Tuesday afternoon.  Doctors were convinced it was an infection.  We have no idea what’s causing this behavior.  They did CT scans and xrays and an MRI of his brain.  Nothing unusual except his potassium is low and he’s very dehydrated.

He came out of the fog and by Tuesday evening he really wanted to come home.  I got him home Wednesday afternoon and by Friday morning he was back to work.  Another week goes by and the visit to the oncologist says he is down to 132 lbs.  He mentions a sore spot to them again and they look at it and just say ‘We’ll keep an eye on it’.  He and the doctor agree that he should wait another week before trying the chemo again.  So we had a relatively nice weekend, though he was tired and didn’t do too much.

The next Wednesday morning, I am awakened by him calling me from the bathroom.  Apparently the sore spot was something to be concerned about as there is now a hole in his abdomen that appears to be connected to his bladder.  We relatively calmly work on finding a way to manage that.  He calls the on-call oncologist (as it is before 7 AM) and he concurs that this is something odd and that he should go to the hospital, so we get it together and get in the truck to drive the 45 minutes to the hospital.

Once we are in the emergency room (room 13 again) they talk to his urologist and decide he needs a catheter to try to drain this away.  What appears to have happened is a fistula of the cancer has now grown out of his bladder and the bladder is now fully involved with the cancer.  What I have put together is that the particular type of treatment they did was more like pouring sugar water on bind weed…it just took off and grew very quickly.

This time he has to have the nefrostomy tubes inserted in the Kidneys and now two more pieces of hardware to deal with.  He tries to ask nurses, doctors and social workers about living with this…he gets blank looks in return.

After much more confusion and an 11 hr wait we got to go home on Saturday evening…which is when he stops eating again…(want to know how to drive a farm girl crazy?  Stop eating.)  He will eat an applesauce for breakfast, maybe a little serving of leftovers for lunch and a half a serving of whatever I make for dinner.

This is the journey so far…every day I see a little more of him slipping away.  The messages I get from the Gods are that I have to leave this alone and let him go on this journey.  He acknowledged the other day that he doesn’t know how long he can last.  I have to figure out how to get him to tell me what he wants.  Cremation? Burial? If so, where? If he won’t do that, I have figured out who I will have facilitate the memorial and I think it will meet with his beliefs but also not be shocking to the good christian folk who will also be attending.

I also need to twist his arm to write down accounts and passwords and to get all the bills into the auto pay account.  I saw the hell that my oldest and one of my best friends went through with the sudden death of her husband.  She has been dealing daily with both grief and panic.  I don’t want to do that!

I was looking at a local hospice/palliative care group for information.  They facilitate anticipatory grief work with children but seem to ignore that in adults.  There is nothing being offered to help partners, spouses, adult children, or other friends/family cope with the long and winding road across the veil.  How to deal with frustration, anger, exasperation, fear, and all those other things that go into “Grief” seems to be a taboo subject….or is just so foreign to western society that we just expect people to suck it up and do it…whatever it is.

I will pause for now…5 pages of doom and gloom are quite enough for this entry…I am just processing and sharing my experience for now.  It is a record for later…for after…when hopefully I can use this experience to make me better at what I do in some capacity.

I will leave you with this.  Love each other.  Say it loudly, softly, wordlessly, and with a fully orchestrated score.  Today, here, now…that is the only happily ever after we ever really get!  (There’s an idea for someone to write…The Death of Prince Charming….)