Beginnings and Endings

After more drama then necessary I got my Terceva on Thursday night. I read through the side effects.  This is not something I was prone to do prior to starting chemo.  But the side effects are different then other meds I have taken before and these have a potential that seems much important to be aware of.  And some of the ones for this chemical are quite interesting.  I have already mentioned the acne rash, which of course at 55 I am really looking forward to.  Then there is the loss of appetite, weight loss, nausea, diarrhea, and unusual hair growth.  Oooh, now there is an interesting one.  And what does that mean?  Hair growing out of my ears or nose?  On my back?  A full beard, that could be a nice look with the acne rash across my cheeks and nose.  What if my eyebrows grow 6 inches in an hour?   Ms Moon suggested that I carry a pair of scissors around just in case I need to trim unusual hair growth when I am out in public.  


OK, I am not really concerned over unusual hair growth.  I am a little anxious in general to see what kind of side effects will come.  So far with the chemo I have been pretty lucky that the side effects.  For the most part I have not had a lot of side effects or very severe.  


This is one of those drugs that you have to take one hour before you eat or 2 hours after.  I know that is simple, but it is amazing how complicated I can make that.  But to make sure that all went well, I ate my dinner at 5.  Jeez that is way too early to eat.  And then took my first pill at 8:30 pm and went to bed.  I thought any side effects listed that could be a problem may be  minimized if I was asleep.  Also some of these side effects would be easier to deal with, if I have to, by being at home and close to the facilities.  


I woke up at 3:30 in the morning holding on to the bed as the room spun around me.  It felt like I had a mild case of food poisoning.  That is a normal reaction to taking pills for me.  But not the first one.  So with some trepidation I took the second pill at 6:30 before I left for the Opera House.  By the time the show started a little after 8 the food poisoning symptoms were gone, and I felt fine.  


Maybe taking the chemo and then laying down is not a good idea.  Maybe I need to take the pill around 6 or so each evening and then eat later.  I swear I can not eat at 5, so I can take the pill earlier and then wait for the two hours to eat, and then lay down.  That might work much better.  We will see.


So we have an ending today.  This is the last day of Steele.  And oh my, are we going to have quite a last day.  I need to get ready and head to the Opera House so that we can have a performance at 1:30.  then when that show is over we will set the tables for the dinner prior to the 8:00 performance.  Yes, Community theater is very glamorous.  


And we are all exhausted and by tonight after our final performance there will be little puddles of weariness where people once sat.  But it has been a good show.  The ladies have been amazing.  Every night they get out there on those boards and say their lines, or something close enough, and then deal with deep hard raw emotion.  And then flip from raging or tears right into laughter.  And to grab your audience and bring them along with you on this ride is a pretty exhausting thing to do.  And these ladies have done it beautifully, night after night.  I am in awe of them.  I sit in my little dark corner and listen.  I can not see them, I can only hear them, and in the dark the roller coaster of emotions pull me along and I feel a part of this amazing thing that we do.  





But right now, I am a human doing and I will get ready and go to the Opera House and be a part of this wonderful and amazing world of fake believe (one of Jack's famous sayings).  I will work hard to be supportive of the cast, and I will help to set tables, check the theater for trash and run my lights.  Maybe it is the balance of being and doing that I have off.


Break a leg ladies, and lets do this thing.  Together, working as one to bring smiles and laughter and tears to our patrons.  

Less drama

It is Tuesday and so far no drama.  No heart attacks, no sick pets, no deaths, no racing off to hospice facilities.  Just a normal, quiet week.  Ahhhhhhhhhh.  I really needed this.  


I was going to work later today to watch the phones and try and get some work caught up, but instead I came home right away because they were supposed to deliver my new drug.  It is almost 5 and still no drugs.  So I could have stayed at work, but who knew.  I am sure that they will show up, sooner or later.  OK, later, sooner is gone.


I call Larry every day.  More days then not I just talk to one of the people who works there and they give me an idea of how he is doing.  But this morning I called and they put the phone up to his ear and I was able to say hello to him and just talk for a minute or two.  I don't ask questions, after all he can not talk.  But I try to say things that he can just mew or grunt at.  When the nurse took the phone back she said to me that he really responded to my voice.  


That still totally amazes me that he can love me that much.  The surprise is that he was so willing to give up our relationship for drugs, alcohol and porn.  I realize that these are addictions and considered illness so allegedly you are not supposed to hold this behavior against them, but when you are left behind for things that have no long term reward, it is hard.  It is hard to be rejected for whatever, drugs, alcohol, porn, a real live person, whatever the addiction, it doesn't matter to the one being left, it hurts.  I tried to get him to get help.  He blamed me.  But now that he is off the drugs and alcohol and addicted to drugs that keep him from blowing up or convulsing or being in pain, he has come back to me.  


When we got divorced he didn't want the divorce, I did.  He was running through literally hundreds of thousands of dollars.  Money that I had put away each pay check for our future.  Money that came when we sold our little house on Pine Island.  We had planned on this amazing retirement together.  Travelling, spending time together, not having to worry over money.  I didn't want to get divorced, but he was not "here".  He was in a lost world, he was one of the lost boys.   He was Peter Pan.  The grasshopper, I was the ant.


My job had taken me on the road a lot for 20 years.  I was on the road way more then at home.  And I longed for the days when we would have the time together.  And I had a hard time giving that dream up.  Meanwhile he was high so he had no idea what we were loosing.  And because of his addictions he didn't care.  And after the divorce he would not leave me alone.  He kept coming back here.  I would find him sleeping in the barn, across the street in his truck.  Sometimes I would agree for him to stay here just to not fight, and he had run through all of his money so he had no place to go.  I bought the Airstream to get him off the property, and had it put at Camper's world.  That is only 2 miles from the house, but I was willing to take 2 miles over him sleeping in the barn.


And now all he wants is to be with me.  I am flattered.  I do care for him deeply, but he may not be able to remember everything that has happened in the last 3 - 5 years, but I do.  I have tried to let the past be the past, to forgive, and honestly, I think I have done as well as I could ask of myself.  I could not do all the things for him that I do, if I was still holding on to a grudge, but that does not mean that I do not still have hurt deep down in my heart.  But each time he grins at me, and each time he squeezes my hand, and each time he responds to me, a little bit of that hurt disappears.  And that is exactly how it should be. Maybe love does conquer all.  But I still cry every time I talk to him, everything I think about what he is going through.  I cry when I think of all of our plans.  The most important one to me, was to have someone to grow old with.  To be there for each other when we were old.  To just sit and hold hands, that sweet gentle kiss that people who have spent more years together then apart share.  


But we have what we have now, and I will be going back down to see him again.  Now I know I am doing it as much for myself as for him.  





Shoot, as wonderful as my life has been, it has been messy, beautiful and ugly, filled with love and adventure, tears and smiles, flowers and plants, trees and rocks, animals of all kinds, friends and family.  And my life still over flows with all the blessings and gifts that anyone could ever dream of.  I know of people who have truly amazing lives filled with travel all over the world and money to do whatever they want.  I don't envy them for their wonderful lives.  I have made a life that I am happy in and with, and my blessings overflow for me.  Just having the ability to let my fingers dance across the keys of this computer, and to make this journal of my life at this time.  To get to shed the weight off of my shoulders and chest, allows me to move past each challenge.


I will be stronger.  For the last month or so, I have just felt overwhelmed.  It seems like each week another tragedy or drama swirled around my world sometimes knocking my breath out of me, other times just stressing me.  But I will be stronger.  I have let my heart break open with the loss of Colin, and now as I watch Larry slowly fade away, and I am grateful for the opportunities to feel the pain.  I don't know if it makes the good times happier, I don't think so.  But it has helped me to take the time to enjoy the gifts, the laughter, the love, the good the quiet.


Now back to the play to prepare for auditions.  I am still not sure that I can do this.  That I am strong enough to take on this much of a responsibility.  Not that I have to do it alone.  Judy and I are doing this together, but I want to hold up my part.  I know that the rest of the Stage Company will support us.  We are a very supportive group.  And I will appreciate this time and know that not long after the play is done, I will be retiring.  And then I can rest for a few weeks before Dad and I take off on our trip.  We are hoping to leave around the 16th of June.  I am anxious about the trip, about the money, about how is dad going to be able to do this.  But he seems to think he can.  So if he thinks he can, then I will help make sure that it happens.  And for now, enjoy the quiet.

Learning to say goodbye

I spent most of yesterday, Sunday at the Opera House.  I got there at 11:00, helped to finish setting up tables, which didn't take much because Jack and Jan had got there @ 10 and done most everything.  So Ms Moon and Marcy and I did the last little bit and then ran over to Subway for lunch in my new ride with the top down.  As much fun as it is to drive, it is even more fun to drive it with friends along.  Back at the Opera House I mixed mimosas and then took them around to give out to our lunch crowd there to see the show.  We had a great crowd for lunch, but we had a record number of people for a matinee.  And it was a great show.

After the show, Ron had bought pizzas and we had mimosas left over after I miscalculated the amount of mimosas needed.  Then Mary, Michelle, Judy and I headed over to Ms Moon's house for martinis.  This was Michelle, our newest adopted member into the stage company, first trip to the Moon casa.  We took a tour around the yard and then through the house.  I love the tours and try to never miss one.  There is always something amazing to see at the Moon's.

I finally got home last night after 7, and I was exhausted.  I called Dad and spoke to him for a couple of minutes.  He was worried about me wearing myself out, so got off the phone in a record amount of time for one of Dad's and my phone calls.  I am so fortunate to have my Dad.  He is terribly politically incorrect and says things that can often hurt someones feelings.  But as Mary, Marcy, Jack and I were talking, it appears that it is common with people their age and experience.  Things that they never would have said 40 years ago, they don't seem to even hear.  Dad has been so supportive of me, not just now, but throughout my entire life.  This is very hard for him to have to watch me go through this.  And I am grateful to have him in my corner.  I miss my Mother, but I still have a piece of her with me, and with Dad, so it helps.

Then I talked to Larry's cousin Bonnie.  Bonnie is Larry's favorite cousin, shoot, Bonnie is one of Larry's favorite people in the entire world, and she loves Larry with equal admiration.  We talked about where Larry is and how he is doing.  It is so hard to watch him slowly fade away, it is even harder to tell someone who loves Larry so much about what to expect when she sees him.  She is trying to get there today.  She asked me if she should wait.  I said no.  He has good days and bad days, and no one can tell her which she will find.  We both held back tears as we talked, but it was so special to talk to someone who knows Larry as well as I do, knows about his history and loves him.  I know that he will be so happy to see her.  

Visiting with Larry last week was one of the hardest things I have ever done.  Our history goes back 25 years.  Twenty five years filled with love and adventure and heartache and fights.  It was a complicated life together.  We shared so much, and yet, there are times in that time where we were so different and so far apart in so many ways.  But doesn't that sound like a typical marriage?  I am sure that is why you say, "for better or worse, rich or poor, in sickness and in health".  And yes, we did get divorced, but that didn't seem to matter.  And now that he is so sick, none of the bad matters any more. It is hard to clip someones toe nails, to give him a partial sponge bath, to feed him each bite and encourage him to eat, to drink.  I spent time talking to the volunteers telling them that his favorite thing to drink is Welch's grape juice.  His favorite thing to eat is vanilla ice cream, mushed up with a little milk to make it like soft serve.  How can you hold a grudge, how can you not forgive when you are sharing this kind of intimacy with someone.  





And every once in a while he is able to form a sentence.  A full clear sentence.  And each time it takes me by surprise and leaves me at a lost.  On Saturday morning  I sat there with him, holding his hand.  I got up in the bed and laid next to him and held him tight.  I told him that everything would be fine, that I loved him.  He could whisper back each time, "I love you."  But then he asked me if I believed in heaven.  I stared at him wordlessly.  The moment passed and I never answered him.  I wasn't sure if I had heard him correctly.  Had he really been able to ask me that, so clearly, when he can not even ask for a glass of water?!?!


I spent every minute I could with him.  I ate very little,  I was exhausted at night, but did not sleep well, restless and worried.  I was wearing myself out, using reserves I need for myself to keep myself healthy.  But it did not matter, I went there because I knew he needed me.  There was no going back.  Saturday as I tore myself away, crying, I drove back home.  


I called Ms Moon and told her how things had gone.  I remembered two of the three questions he had asked me on Saturday, but I could not remember the third question.  After I hung up with her and continued my drive I forgot the other two questions, but it hit me hard that he had asked me did I believe in heaven.  


What do you say?  He obviously did not want a deep theological discussion.  He wanted reassurance.  I have strong feelings about my beliefs of the afterlife.  He does not want to hear that, he wants reassurance that he is a good person.  And I lost that opportunity to reassure him that he is a good person.  And yes, I do think he has a good heart.  The Larry I first met was one of the kindest, sweetest people I had ever met.  His heart is good and kind.  The drugs and alcohol affected that and pushed the sweet, kind, loving person back into a corner.  But even at his worst in his addictions he would be taken of advantage of because of his kindness.  


Don't get me wrong, if you had asked me any of this a year ago, I would have struggled to find anything kind to say about him, but a lot has happened in this past year.  To both of us.  Does he still have that addictive personality?  Oh yes, if you leave drugs out that he can get his hands on, he is going to take them.  I am sure that if you offered him a rock of crack, he would snatch it up immediately, well, emotionally, not physically, because he can not snatch anything right now.  He is not perfect.  I am not perfect.  We are an accumulation of our entire lives.  The good, the bad, the sweet, the kind, the awful, the mean, the bad choices, the smart choices.  


When I got home I called Richard and asked him when he went up to visit Larry that afternoon, to call me so that I could talk to Larry on the phone.  I laid down to take a nap and to rest before the long night of the play.  No sleep or rest came to me.  


Richard called and put the phone up to Larry's ear.  I told him that I wasn't sure if he had asked me if I believed in heaven, but I was going to tell him what I thought anyway.  I told him that I believe that everyone with a good heart goes to heaven.  And that Larry has a good heart.  I told him that I thought it was a place where everyone you loved and has gone before you is waiting for you, and all they want to do is love you.  That I knew he would be waiting for me when my time comes.  And that everything would be fine.  Not to worry about anything, to relax and know that he was going to heaven and that everything was going to be OK.  I told his cousin Bonnie about this discussion and she said that she would also talk to him and tell him that he was a good person and would be going to heaven to be with his Mother and Father, his grandparents, his friends that have died before him.  That he would be surrounded by love, and that everything will be OK.  I am so glad that I took the moment to tell him that.  I am so relieved for him that Bonnie is going to talk to him about it.  We all want to be reassured that we are good people.  We all want to be loved.  Basic needs.  And at the end of his life, Larry has been reduced to his basic needs.  He is not capable of much anything beyond basic needs.  He is able to sleep.  He needs help eating, cleaning himself, communicating, thinking.  Basic needs.


I seriously had thought I had put myself aside to focus on Larry.  To be there for him, for his needs.  And yet, I have been given another wonderful gift.  I have a new perspective on my life with Larry.  I remember the good and the bad, and it all is part of who we are, and what our lives were.  But the good is starting to outweigh the bad.  


I was given the gift to feel needed, to be able to do for someone else.  I rely on so many people now to help me in just about every aspect of my life.  I need their support, their love.  I am able to take this journey because of my friends and family.  I wanted to give that to Larry.  


And he gave back to me.  A smile every time I walked into the room.  A "I love you" every time I said it to him.  I was able to lay next to him and feel that closeness we had once taken for granted, what a gift.  To feel close, to feel an intimacy of closeness of love.  Sex is not a part of this relationship.  It has been a long time since the trust was there to have that part of our relationship.  But what we have gotten back is so much more important, and will last so much longer.  


And when I die, do I believe in what I told him?  Not exactly, but in certain ways, it is exactly the same.  I do believe that we are all made up of energy.  I do believe that energy can not be created or destroyed.  I do believe that strong emotions are strong energy, and if we all return to being pure energy, then really it is just semantics.  Maybe that is why people see a "light" when they die.  After all, light is a form of energy.  


I know that I will go see Larry again if he is still alive after the play is over.  I will not stay as long.  I will make a run down one evening and probably come back home the next day.  After all, I have a lot to do at work.  And we still have one more weekend of Steele.  And then we have the cast party at Marcy and Fred's on Sunday, and auditions for the Murder Mystery.  Then the second weekend is the garden circle meeting.  Yes, my plate is full.  And yes, it does wear me out sometimes, but I love being a part of the Stage Company.  And I love the garden circle.  And I feel so fortunate to have the opportunity to give someone the gift of caring and need and attention that one day I will need to ask from others.  


I am learning more about myself, I am anxious to get started on this new drug I am supposed to take.  I thought I would be on it by now.  I called and left a message with the Bobbie, Dr. M's nurse asking about it.  It will come.  And I have had an email from a dear friend who is a doctor who gave me a little more insight on the drug and possible treatments for my cancer.  Thank you Michael.  


And as always, I am grateful for all these opportunities.  To love and be needed, to have those who love me, and take care of me, so that I can take care of others.  Our energy is connected and our love circles around and around capturing in the people around us.  Giving us gifts that we never knew existed, that we never knew we would be grateful for.  And I am grateful for this opportunity to go through this process of dying with Larry.  Is this how it will be for me?  I don't think so.  I understand better each time I loose someone I love, that each death is unique, but I am learning.  And I am so very grateful for all of these gifts.

Until Later

It has been quite a week. Last weekend Harry, my 13 year old lab, started this choking, vomiting, coughing thing.  Sometimes it lasts for a few minutes, sometimes more then half an hour.  It looks like he is trying to pull his toe nails up through his digestive system and out his mouth.  It worries me, but it is also irritating trying to sleep at night and he is having his little spasm.  Then I feel so guilty that I am irritated, because of lack of sleep, but he is suffering.  So Tuesday I took him and Henry, who had the swollen back foot, along with Bob to the Vet.  The new vet is gorgeous.  I mean like as gorgeous as Dr. M.  They checked for heart worm with both dogs, and the tests came back negative, thank heaven.

Tuesday Richard and Colleen had to put Larry in a Hospice facility.  He was pretty much unresponsive.  I changed my schedule to head to Brooksville Wednesday after work.  I went directly to the facility.  Larry did respond for me.  He squeezed my hand, he ate ice cream, after I mushed it up the way he liked.  I stayed there until Saturday and then headed back home.  I am a wreck.  I am exhausted, stressed out as emotionally and physically as I think I have ever been.  I had to leave Larry there, obviously fading, but who knows how long he can hold on, he is a pretty determined man.

I got home yesterday and tried to take a nap.  No way.  I had to talk to Larry on the phone, and then got changed and went to the Opera House for Steele.  I didn't want to bring any one down, or distract from their work in the play, but these are my dearest friends here and I needed to be with them.  I needed not to stay at home alone crying.

Now I am going to head up to the Opera House to set tables and then pour mimosas for the lunch before our matinee show.  When I get home, I will come back here, and add in the information  I need to get off my heart.  To release some of this past week and let the words carry some of the pain away from me.  Just touching the keys just now has helped.  This 15 minutes of typing has already lightened my heart, now to the Opera House.  To work, to put my hands to tasks, to put my mind on the duties in front of me, and to move all the stress and concern and pain into the background for now.  Just being in that building, where Colin now lives in my mind and heart.  And to listen in my dark corner waiting for my cues to bring the lights up or down, to show the actors in their best light.  To run in between scenes to make sure they have what they need.  It is Sunday, it feels like spring, and my gardens, even unkempt and uncared for are pushing new green out of the soil, out of what appears to be dead limbs.  Put the top down, feel that warmth, and spend my day at the Opera House, and then back here to pour out the rest of the story.

A day of rest

Yesterday I spent the day in bed.  The entire day in bed.  I dozed and napped and read a little and rested.  I feel so much better today.  I still need to get more rest but I have until Friday to try and get as much rest as I can so that I can handle this weekend better.


I was told that one of the reasons my friends did not want me to come and set tables was because they want me to rest so that I can do the "big" things.  But it is more important for me to be able to do the little things then even the big ones.  I know I am like a 2 year old, "let me do it myself" attitude, but one of the things that is most important to me is to be able to take care of myself.  To be a part of things, to be useful.  I know that my friends only want the best for me.  But the best is letting me do, not making me feel welcome that I want to do the small things.  That I want to be a part of things.  That I want to feel useful and to be helpful.  Fixing my own meals, cleaning my own house, taking care of my own kids, being a part of my community, being a useful human being.  So, do not use the excuse to tell me what to do because you think you know which activity is more important to me then others.  This is my life, and I want to live the big moments, and those everyday little things that we all must do. 


So if you want to tell me what to do, fine, but be nice about it, and don't keep pushing if I say I stop.  And if you can not live with that, then maybe it is time for you to let me go.  Because when I stop doing, then why am I here.


It is as frustrating as people who want to push a fairy tale on me about living forever.  I know that the best way to live is to live in the moment.  And I am working on that, but for now, one of the best ways for me to live for the moment is to have parameters.  Yes, that is opposite of what you are supposed to do.  But for me to know that I have a limited time left.  And to wake up each morning knowing that I am alive, and that I have another day.  And that my days are numbered, I am able to appreciate the day so much better.  For some people maybe that would take away from their day, but it gives me one of the things that I have found to be the most important part of what I am going through.  Gratefulness.  Grateful for those who love me enough to try and tell me what to do, but also love me enough to let me be me.  Grateful for a new day, another day, a day full of potential.  So knowing that my time is limited  helps me to feel grateful.  Somehow makes it real, makes each day seem more special, no matter how it is spent, whether sleeping the whole day so that I can do the light board for Steele Magnolias another weekend, or so that I can co-direct the Murder Mystery, or so that I can go to work and feel that I am still a service to the people of the state of Florida.


I hope that when I retire and I do not have to get up and go to work each day and use some of my precious energy just to make 5 hours, that I will be able to do more of the little and big things that I want to do.  That I will feel grateful for that added time for myself.  To do as I see fit.  And if that means setting tables or running light boards, or taking my dad to Europe, or pulling weeds in my garden, then I will be happy and grateful for every day.


I talked to Derrick today, he is home from the hospital and anxious to get back to work.  I suggested that after a heart attack, maybe he would want to give himself a little time.  He said he will be back on Wednesday.  Well after all he has been coming to work for weeks suffering mini heart attacks that were destroying part of his heart, almost a quarter of his heart to be exact.  I don't want to be told what to do, so I am being careful to give him my advice, and then let him do what he knows is right for him.  I think he would like to take the time off, but does not have any leave.  And he is welcome to come back as he knows is best for him.


I also tried to get Larry's truck situation dealt with, but that looks like it is going to be several hundred dollars since no one can find the title, which Larry had last.  Sigh.





Then I called the vet and got an appointment for Harry and his cough, and Henry with his swollen foot.


And now I will finish the renewals, I still have a few to get done, and then I can take them into work tomorrow.  Then to bed early.  To rest, to sleep, to dream, to prepare for another day.  I am feeling good and strong, yes, I get tired, but who wouldn't get tired with everything that I do?!?!?!!  and it is so worth it all.  

We are all tired

I am tired, but we all are.  I have been more tired before, that would have been when I was in Fiddler on the Roof.  We had like 10 rehearsals in a row from like 6:00pm - 10:30pm and that was after I worked a full day or more each day, and I was so tired that I tried to scan some papers set to be shredded, no big deal.  But I almost shredded the documents I was so supposed to scan.  That would have been bad, very bad.  I don't think I have ever been as tired as I was then.  But this is close.   I don't know about you, but I get over sensitive when I am tired.  And last night one of my dear friends told me not to come to the set up today.  I have cancer, so I do not have to do the work others do.  I took it personally.  It felt like I was being rejected.  


I have been rejected before by my friends.  And this felt like it again.  I wasn't doing anything wrong.  Just working my light board, being a part of the show.  Doing things with my friends, and they are telling me they don't want me there.  She kept talking, I kept trying to explain why I wanted to help, and it was a small, but overly dramatic mess with me feeling like I was being criticized, yelled at and rejected.  And then everyone seemed to side with her.  That is because she was showing concern, it did not matter that it had hurt my feelings.  That again, is like the last time.  I was moving away from my friends then.  I think  I had made them feel rejected by me.  I felt rejected by them, and everyone was hurt.  I have since gotten to spend time with those friends from that time, who thought about things, and realized that I had never said I did not love them or that I could easily replace them.  I had not said that.  Shoot, I was 50 years old and moving away from friends who had been so dear to me for 20 years, and I was terrified that I would not know how to make new friends.  Yes, I had a few friends up here that I loved dearly, they are work related.  Nothing wrong with friends from work, but I knew I would need to make friends that had things in common with me outside of work. 


And now it felt like that all over.  I will take my portion of the blame because I know now that I was just being oversensitive, and really she was only trying to show concern, but who likes to be told what to do, and we are all tired, so I have to think she might have been a little oversensitive also. She does not usually push me so hard to do what she wants me to do.

Don't get me wrong, I know that when people are telling me what to do it is because they care.  Because they worry over me, because they love me.  And I love them dearly for it, and if they could just tell me what to do once, and then let it go and let me at 55 run my own life, then we would all be happy.  I am not sure we woman are made that way though.  I just hope that it is over, and as soon as I can get some rest, i am sure that I will be able to let this go.  Right now, it still hurts.


The play is going well.  The ladies are wonderful, and each night it is a joy to sit in my dark little spot and listen to them.  Thursday night was the Altrusia show and it is always fun, filled with people who have come to have a good time, to laugh and see a show and drink wine and cheer us on.  Friday night's audience was fine, but they always seem a little flat after the incredible audience we have on Thursday.   Tonight I am sure we will have an amazing group.  For one thing most of the extended Moon clan will be there.  That always makes Mary nervous, naturally.  But I have no doubt that she will be as amazing as always.


It is a lot of fun to work with a cast of woman.  We have Jack, one of the Directors and Caleb who is in the crew, but other then that everyone with the show are woman.  And Jack and Caleb are in touch with their feminine side, so they work well with us.


This morning I had hoped to sleep in, but I did sleep well even if it was not long enough.  I ran a few errands, went up to the Opera House and helped to set tables, and it was good that I was there, because all the people who said they would be there, were not, so as always every hand was appreciated.  Ms Pat went upstairs and walked the seating area picking up drink glasses, candy wrapper, programs and other assorted trash.  I had down it the night before, but it wasn't bad.  Our Thursday night group is much more considerate then our regular audiences, who tend to be slobs.  


McMurray.  I wanted the rainbow collection, but I think if I buy a mixture of the 4 varieties I should end up with a rainbow basket of eggs.  That is great.   I hate torturing those poor little things being shipped a day after they hatch from McMurray.  Plus I really like buying local, and I do not need 25 chicks, which is the minimum you can buy from McMurray.  I am so excited about new babies.  The only bad thing is that you take what they have, they are not sexed, so you can end up with more roosters then you need , or want.


Then into town.  I drove the scenic Hwy 90 which this summer will be flanked by every color of crape Myrtle you can imagine.  Each color and plant location affects when and how long it blooms, so it is an ever changing palette of white, pinks, purples, magenta's and reds.  I missed the heirloom rose collection sale last weekend, but they always have plenty, even at the April sale, I just wanted to make it there before they closed at noon.  And I did with time to share to find that they had had a record setting sale the week before.  They had never in the history of the sale sold so many roses in one weekend.  That left some slim pickings.  To be exact 4.  And I don't mean 4 varieties I mean 4 pots of rose.  There was one there that had a name longer then a winner of the Westminster Dog Show with petite in it somewhere.  A small bush that produces clusters of deep magenta simple 5 petals flowers with a white center, unscented.  Not what I had imagined but it will do fine in that corner where I lost the Comtessa.  I have another Comtessa on the other side of the garden, and I think this smaller rose bush will balance the garden out just fine.


So that did not take any time so on to Lowe's to pick up the potting mix to plant my seeds.


After Lowe's I stopped by Esposito's to see what they had there.  I bought some yard long been seeds.  They are my favorite variety of green beans.  Tasty and fun and they can grow up to 24 inches long.  Then a quick trip to Fresh Market to get some treats, veggie chips, the olive bar, special chocolate, sunflower bread, giant asparagus.  Oh yeah, good things.  And enough to make it through tomorrow.  Oh, and shortbread cookies.  I love short bread.  Then as I was coming out of Fresh Market, there were girl scout cookies, so I bought a box of thin mint, of course and do-si-does, which are the peanut butter ones.  I love girl scout cookies. 


The drive was amazing, sunny, cool, a beautiful day for a ride with the top down.  


So we have almost made it through our first weekend.  Now a week where we can all rest, and do it again next weekend.  And then the next weekend, then auditions for the Spring Murder Mystery.


And hopefully I can have a quiet week.  Three weeks ago I was dealing with the loss of Colin, the week after that, I had my Ex here.  This past week, no chemo, but good news and it was looking good.  Then on Thursday when I went into the office, I discovered that I had one employee.  One had scheduled a vacation, another had said they would probably be out of the office most of the week while his significant other had knee surgery.  But that would still leave 2 employees.  One had gotten sick Tuesday, missed coming in on Wednesday, which had left Ms Rachel by herself.  Then Thursday morning we got the call that Derrick was in route to the hospital with a heart attack.  He is in his early 30s.  Now we know that his left ventricle upper was 100% blocked but they could go in and clear most of it.  The lower half was a different story, and is too damaged for them to do anything.  I have no idea when he will be back.  I know that he will be "OK" but I don't know what that will mean. 


So this week ended up stressful, and with long nights of rehearsals and shows.  We are all tired. But we are there, each of us doing our best.  Each of us playing the dance of words and movements, lights and sounds, together working as one to entertain our neighbors, family and friends.  The Stage Manager cheering us on, cuing us and making sure that everyone is where they should be, guiding the dance.  The props Manager trying to find all the things that keep getting moved and lost.  Playing.  Playing with some of the people I love most in this world.  And when I am there, and we are all tired, I am normal.  I am not the one with cancer, I am just another one of the crew.  I get to dress all in black and sit in the dark and join the Stage Manager, cheering the amazing people I am getting to play with.


But now to nap, to rest, to recharge.  So hopefully tonight I will be less sensitive, and hopefully my friends will accept me for who I am, and worry, but a little less, and remember Shelby's line, if I may paraphrase, "I would rather have 15 minutes of wonderful then a lifetime of normal."  That is me.  I would rather get to live my life now and do the things that I want, even if it means that I live a little shorter time.  I want to have a life that is full and rich and worth being here for.  I want no regrets, I want to have whatever time I have, and live it.  Really live it.  

No Chemo this week

Ms Moon and Ms Judy were at my house at 9:00 am yesterday morning.  This is after not getting home until after 10 last night from rehearsal.  Ms Moon has been taking care of Owen and we all understand how exhausting that is to chase around a 16 month old.  Ms Judy had been building the set all day.  And yet, at 9:00 am yesterday, there they were, exhausted, smiling and giving their support and love to me.  To be willing to sit in the Oncology office for who knows how long just to spend about 15 minutes with Bobbie, Dr. M's nurse.  And then spend about the same length of time with the doctor.  That is true friends.  That is kind and loving people.  We are all exhausted.  But we drive up to Thomasville and make our tea and sit and yarn and talk.  


Then Betty Ann came over and explained that there has been a scheduling error.  Actually they had scheduled chemo for Tuesday and the doctor/nurse visit for Wednesday.  That is backwards.  I had not noticed.  I spend so much time focused on the dates, I didn't notice what I was supposed to do with the appointment.  I let the doctors/nurses etc take care of that, and I show up and do what I need.  Betty Ann said that the doctor was upset, but she had fixed it and he wanted to see us.  We would just have to wait a little longer.  That is a lot to ask of these dear friends, but they did not think twice.  They just waited with me.


Finally our little beeper thing went off.  This is new the beeper thing, like they give you at busy restaurants, only when the beeper goes off, you don't get food.  But we paraded back to the office and Ms Bobbie asked me the questions and then we waited for the doctor.  


He came in and smiled his beautiful smile and said that he had good news.  He had finally gotten the genome testing on the lymph node.  It was positive for the mutation.  This is the mutation of lung cancer that responds to Tarceva.  The mutation occurs in woman over 50 who do not have a history of smoking.  And Tarceva is a pill you take once a day instead of having to do IV Chemo for a whole day once a month or so.  This is very good news.  


Good news!


We all hugged and maybe a few tears even spilled, good news.  Then Dr. M got down to business.  The first 2 months you are on Tarceva are pretty rough.  He didn't go into a lot of details but he did go over a few things to watch for.  First is the rash.  This is an acne looking rash that spreads across the face starting across the nose.  They have a cream for it.  OK, rash.  Not something I am looking forward to, but rash is better then loosing your hair.  I think.  He said that the people who respond the best to the drug get the rash quicker.  All I can say is bring on the rash!


Then he reminded us that this is not a curable cancer.  That this is not a permanent thing.  We will stay on the pill for as long as it is effective.  That could be a couple of years, if we are lucky.  Then we will go back to the chemo.  And when that chemo doesn't work any longer, or if my body  can't take the chemo, then we will do another chemo, for as long as possible.  A long term plan.  A doctor who is like the sweet Antonio Banderas version of House.  He does not give up until he has done everything he can to give me as long and healthy a life as possible.  


Now there is an important part that I have not brought up yet.  I was not going to have chemo yesterday regardless of the genetic testing.  My platelets were at 69K they need to be over 96K to do the IV chemo.  My body is not handling the chemo.  I am not saying it is not working.  It is, but it is taking a hard toll on me.  The pill, once my body adjusts to it, should not be that hard on my body as the chemo is.  


I guess that is the way cancer is, good news and bad news all mixed up together.  A step towards a normal life, with side affects.  


So, should I still retire now?  Yes, I think I should.  They are getting ready to take away the few perks state employees got for putting in years of hard work, at low salaries, few raises.  But we were told when we started that if we were good employees, and work hard, do the extra, put in the hours, serve the citizens of Florida, that we would get a regular pay check, albeit less then could be obtained in the private sector.  And then when we retired we would get retirement benefits.  But now they are threatening those benefits.  I can't afford after 30+ years of working hard for the state to loose my retirement benefits, or have them cut.  So I am going to retire.  I am going to stick with my plan to retire the end of May, beginning of June.  





After our good news, and we had all hugged, then Dr. M came over and gave me a big hug.  he asked for one.  I wanted to give him a hug to say, thanks, but he asked first, and I was careful not to mess up his perfect hair.  And then the three of us went to George and Louie's for Greek food.  But it turns out that they only have a couple of Greek specialities on their regular menu.  Once in a while they will add a few other Greek dishes, but not today.  So we each had Greek salads, one with shrimp, one with salmon and one with fried oysters.  And it was wonderful.  George came over and talked.  He is the owner and brings food out to people and talks to his customers and seems like a nice man.  He explained that Louie was his father, his first name was George, but his middle name is Louie and his friends call him Louie, and he asked us to do so.  


Then it was the long drive to Tallahassee and Ms Judy drove me and the Malibu back to my house.  We were both exhausted, as was Ms Moon, but we headed home, hopefully for naps all around.  And I did.  As soon as I got home I laid down for a 2 1/2 hour nap.  I woke up feeling so much better.  Not great, but a hundred times better then I had felt.  One little nap is not going to fix the exhaustion we all feel right now.  But it did help.


I got up, and drove to the Opera House and for our last rehearsal before our show on Thursday night for Altrusia.  There will be an audience. Friday night is opening night, but Thursday is like our big dress rehearsal.  Rehearsal went much better, and we have the confidence to do the show now.  And it will be a fine show.  We have sold so many tickets that they added a Saturday matinee on the last day of the show.  Two shows for the last one.  Wow!  That is a long day.  It is a long show, like 2 1/2 hours.  But the ladies are doing wonderful, and the show is going to be filled with laughter through tears.  I am doing the lighting and backup dresser.


After rehearsal, Pat called us into the back dressing room and read an email from Catherine.  Colin had always said that he had never been in love.  But those of us who knew and loved him, disagree.  He loved his first wife, you could tell by how he talked about her.  And he loved Catherine.  You could tell how he looked at her, how happy he was when she coming for a visit.  And how lucky he was to have loved two such special women.  And we all loved Catherine, not having had the chance to have met his first wife.


Pat and Ron had emailed Catherine and Pat read the response.  It was so beautiful, so Catherine, so Colin.  And somehow it gave me a little bit of closure.  Catherine was in the room with us, suffering like us, actually more.  After all she was as close to Colin as anyone could be.  And having her with us, even if just in an email, seemed to make things better.  She is a special person, and that was so special of Pat to share that with us.  It did make a difference for me.


So I have had good news.  I qualify for the pill.  It might give me a little more time.  It should give me after the first two months, a more normal life.  it might give my body time to get strong enough so when I have to go back on the IV chemo, my body will be strong enough.  All good stuff.


But the hard part for me, is that whenever we get good news, so many people start in with the you will out live all of us.  Well, probably not.  And to pretend that I do not have cancer, or that I will live forever, does not help me.  Why can't we just be happy with the good news for what it is.  Why do I have to be stressed out with fairy tales and happily ever afters.  I want what Colin had.  I want to accept this disease, learn from it, even suffer with it.  Because it makes me appreciate my life so much more.  Knowing the reality of what I have to face is so much easier to deal with by accepting it.  I don't mind knowing that I have less then 10 years to live.  Yes, yes, the Pollyanna's say, they could find a cure between now and then.  That is true, but not likely.  Dr. M is using the latest proven technologies and chemicals.  We are not doing experiential drugs or practices, but proven ones with statistics behind them.  Accept it.  Let me accept it.  Let me live each day actively balancing life and death.  I don't want the princess version where I miss things because I am so busy pretending everything will be fine and I will live forever.  


I am happy to have the life I have right now.  And right now I am exhausted, trying to recover from the stomach bug.  Trying to do the best job I can at work, and be the best lighting person for the Directors and the Stage Manager so that the actors can look their best, and our audience will have a wonderful theatrical experience.  So they will want to come back and participate in the Spring Murder Mystery, that Ms Judy and I will co-direct.  It will be a challenge.


But maybe that is what I am looking for.  A challenge.  I am ready to retire after 30+ years.  I have a few things I want to do, but mostly I want to dig in the dirt and grow veggies and flowers, and throw the ball for Bob, and hug on Maggie and Harry.  To scratch Henry behind the ears, hold Stella, run my hands down Luna's back and try to give Marina love whenever she is willing to accept it.  I want to watch and feel and see the changes that my body is going through.  I want to support my friends as long as I am here, because they have given me so much.  I want to slow my life down, and allow the cancer to slowly do its thing.  To experience a full death after a life that was so wonderful and amazing.  


Please do not deny me that by refusing to accept what I have.  Don't push me into the grave, but let it come as it will.  Love me knowing that I am only here for a while longer.  Help me to live each day as fully as I can at that moment.  Whether that is resting or directing a play.  Whether gardening or working part time for a catering company.  I think in America we want so much, and sometimes we can loose the greatest gifts we have been given by wanting things to be different.


Colin knew what was happening to him.  He faced it his way.  Let me face my disease my way, and when the time comes, celebrate with me for all the opportunities I have been given, including this cancer.  


We were talking last night about how much we hated cancer.  And I do hate the cancer that has taken my friends from me.  But I do not hate my cancer.  That would be to hate part of myself.  These are my cells that have gone insane and have spread.  I don't mind the doctors doing what they can to slow this disease and make a change in my prognosis, but maybe because Dr. M has been honest, all along.  This is incurable.  And I appreciate knowing that.  Because the greatest gift given to me is to have these next how many years to live a new way.  A way with cancer.  But I know that somehow in the next how many years I will lay down because of this disease and will have the chance to be the best person I could ever be, and to die a death, with no regrets, no fairy tales, facing head on my life, my death.  


 But for now, the pill.  I am ready.  Hopefully we start this new adventure within the next couple of weeks.  And it is another opportunity for me to try and be the best I can be.  To try and make this work, to hopefully gain a few years of a more normal life.  A life with a pill a day, instead of days missing as I sit in the infusion room.  The sun is shining, I have so much to do, but I am going to go lay down and rest.  And depending on how I feel, I might even go to work for a couple of hours tomorrow, and then come home and rest and get ready for the show.  Dress all in black, I will sit at the light board and follow the directions on my script.  And I will help the ladies change, and we will perform.  The actors will take their bows.  I will stand back stage and cheer them on.  That is my favorite part of plays and life in general, cheering them on.  Please cheer me on, with realistic hopes, not fairy tales.