Sittin On A Porch

Sittin On A Porch
Our little back porch

Sunday, January 30, 2011

Sunday in the Garden

Saturday was the most beautiful day we have seen since, I don't know.  It was glorious.  Sunny, warm, humidity fine, the light just washes through the branches calling me outside.  But each time that I went outside I would get the most horrific headache.  It would drive me back into the house, take an ibuprofen sit down and close my eyes until it passed.  I opened up the doors and sat in my red chair with sunlight all around and went through my American Horticulture Society seed catalog.  I placed my order.  I love the seed give away.  One year I actually donated seeds.  I pour over the catalog and circle any thing that sounds interesting, then I go back over and over until I finally get it down to the 15 choices, 4 substitutes choices, 2 bonus packs and the 2 substitute bonus seeds.  I don't think that they have ever had to substitute any of my seeds, but I mark them down.


This morning I woke up and took 2 ibuprofen as soon as I got out of bed this.  I did my weekly laundry while I watched Sunday Morning, and then as soon as it was up, out I went into the warmth and sunshine.  I cleaned out 2 gardens, and then worked on the veggie garden getting the big weeds out of 2/3 of the little garden.  The last 1/3 is the hardest side.  I planted some pansies and will transplant more out of the veggie garden into this little garden as time allows.  It was glorious.  I worked slowly, spending a lot of time looking at what I had accomplished and what else I should do.  I cut back the Confederate rose and the native budleah.  Trimmed the dead stalks of butterfly plants.  In the spring new plants will grow up from the roots of the milk weed and some of the salvias.  I found my little forsythia that I thought had been broke off.  it is still small but looked good, its buds swelling with the sunshine preparing to burst their yellow flowers up and down the stem.  My iris are also coming up.  My favorite is kissie, a deep pink and yellow flower.  I go to the nurseries and look at the iris and once in a while I will bring home a different color, but I always find myself drawn to kissie. . I love the name and I love the color of the flowers.  


It felt so wonderful outside, but it was even more wonderful to see the different plants still alive after months of neglect.  In the front yard daffodils are sprouting, day lilies are starting to show their spring green.  I am going to dig up most the day lilies along the front fence line and move them to along the outside of the fence instead of inside the front fence line.  I want to plant azaleas along the inside of the fence to cut back on looking into the yard, and to help keep Bob from running up to the fence and barking.  And then the sun is a little better on the outside of the fence, so maybe the day lilies will bloom more there.  I am also considering getting some Asiatic lilies on the outside of the fence.  I am not sure there is enough sun, but I can always transplant them later if they don't do well.  But I think without the dogs tromping them down and where they will get a little more sun, it could be a beautiful display as you drive up to the gate from spring through the end of summer.  


I have so much work to do to get the gardens back up and healthy, but that didn't bother me like it always has before.  I just felt good to have the time I had today out there.  I enjoyed every moment, whether sitting and pulling weeds, or trimming back the dead or just walking through the yard looking at the plants.  It was wonderful and invigorating.  I feel so much stronger for the few hours I spent outside.  I love spring and summer and even fall before it starts to get cold.  Have I ever mentioned that I don't like the cold?  


But today it was warm, it was sunny and glorious, simply glorious.  And I was happy.  I don't know if I got my perspective back, but I did get my smile back.  I think I must have a cold or a sinus thing.  So no wonder I was in a funk.  Not today.  Today, cold or what, it didn't matter.  It was all about the garden.

Friday, January 28, 2011

A loss of perspective

I have lost my perspective on a lot of things.  Oh, and I am cranky.  A lot.  My friend William told me that I am simply in a funk, and so is his wife.  He says it is simply the cancer and the treatments.  I think the time of year is also helping, or hurting, or however that should be put.  His wife had breast cancer.  They fixed that, now she has ovarian cancer.  And they just found out that their son's bone cancer that originally showed up on his foot, is back.  William looked worn out.  I can't even begin to know how his wife could handle this.  I guess that might be another reason she is in a funk.


That does not make me feel any better.  I just feel weaker.  Look at all she is handling, she deserves to be in a funk.  What excuse do I have?  


My perspective is so off that when I look in a mirror or put on my clothes I see a fat woman.  Really, fat, like hundreds of pounds.  I weigh 128.  That is not hundreds of pounds.  So I put the scale in front of the mirror and I stand on the scale and look in the mirror and try and get my perspective back.  So far it might be helping a little, but I still feel fat.

I feel like a failure right now.  Like I can't do anything right.  Everyone says I sound great on the phone.  Really, everyone.  They say, you sound great.  At work, they come by and tell me how cute my hair is and how good my skin looks.  I think my skin looks good because I am fat.  And my hair doesn't seem to be growing, but that is OK, because of that curly cue thing in the front.  I have started imagining it is going to turn into a horn.  Rhinoceroses horns are made out of hair.  I wonder what unicorn horns would be made of?  Nail material like cattle or hair like a rhino.  I don't want a horn sticking out of the front of my head.  I think I may have to keep my hair very short so I do not to worry about the horn.



I am really in a funk.  I have missed appointments.  I have confused appointments.  I don't think I am taking that many drugs.  I take a melatonin, an antihistamine and an Ativan at bed.  The ativan is an anti-anxiety drug.  It keeps me from waking up at 2 in the morning worrying.  I never thought of my self as a worrier.  A planner.  Yes, but as soon as I had the plan, no worries.  


I can take the ativan every 6 hours.  So should I take them more often.  I mean they give me a hundred every month.  I take one a night.  I think I will start paying closer attention to what is going on to see if maybe I should follow the dosage a little closer.  It makes me tired.  It also affects my alertness.  I don't need anymore help not being alert.  


Yes, I guess I am in a funk.


I had my PETscan on Thursday.  Not Wednesday.  Thursday.  sigh.  I drove myself there because they said there was no reason I shouldn't be able to drive home by myself.  I had already taken Ms Moon's day to drive me there on Wednesday.  My appointment was Thursday.  Not Wednesday.  sigh.


So I got to the hospital a little early, they got me right in.  They fill out lots of paperwork and then they put you in a recliner in a dark area with no stimulus.  They hook up an IV.  They can't use my port because it contaminates the port with radioactivity, and it does not go away.  I said maybe I could just use it as a night light.  They did not find that funny.  So they hook you up to a fluid bag and then the head of radiology comes in and injects the radioisotopes.  Pretty cool huh?  Then you sit in your quiet dark space and close your eyes and wait.  About an hour later they come and get you, have you empty your bladder and then lay down on the moving table and they perform the scan.  It takes less then 30 minutes.  Then they advise you to go home and limit contact with people.  It is best to avoid children for 48 hours.  No hugging or holding.  I stopped at Publix to get some fruit and avoided being close to anyone.  But this one woman insisted on talking to me, and then walking up and rubbing my back.  I had to step back to keep her from hugging me.  I didn't start this contact, she did, and for whatever reason insisted on physical contact from all people.  Me.  I feel like an old fashioned micro wave at the convenient stores with the warning to people with pace makers.  I am a danger to others.  


I came home and I know I have to drink a lot of water.  And I think I am drinking a lot of water.  But my perspective was off.  I didn't drink enough water because when I went to bed last night, I had a killer headache.  A radiation headache.  I lay in bed after taking my drugs, and one for pain and could imagine all the brain cells I was cooking by not having drank enough water.  The screaming in my head was the dying braincells.  I kept getting up and drinking more water.  I kept getting up to get rid of the water I was drinking, which gave me another excuse to drink some more water.  I don't think I killed off too many brain cells.  At least not the strong healthy brain cells.  Just the weak ones.  I hoped it would help my perspective today.  But I don't think so.


I am going to have to re-think how many people come and visit.  Part of all of this is having company every other weekend.  Everyone comes planning on helping me, but I am too hard headed.  I am too programed to what a proper hostess should do.  These are my friends.  They don't expect me to do what I do.  I am programed


That is part of my funk.  I like my regiments, my programed life.  Get up at 6:00 am, feed the animals, shower, brush my teeth, moisturize, get dressed, eat breakfast, drive to work.  Work, come home.  I like these patterns.  And lately there does not feel like there are any patterns.  Chemo keeps switching as my body recovers.  And I am exhausted, so no surprise when they have to reschedule.  Tests, work, company, tired.  


So today I stayed at work a little later to try and get things wrapped up.  I will only be working one day next week, and I have a lot to do.  I know it is just work.  But it is what I have focused on for 25 years.  It has been a big part of my patterns.  Patterns I like.  I will gladly give them up for my retirement, but right now, I am still employed.  I am still obligated, in my mind, to do the best job I can.  it gives me something to focus on.  I know I need to focus on my health.  But sometimes you just need a distraction.  I wore myself out though.  I don't understand.  I am not sick.  Yes, I have cancer, but that is not sick.  How can everything be so hard.  How come I can't get my stamina back.  Oh yeah, chemo.


And I have so many things half completed.  My retirement, my will, my life.  Did I mention that I am exhausted.  I don't mean to complain, as much as just comment on what is going on.  Why it is hard to talk on the phone to people.  Why it is hard to talk to people about visits.  But Susan did mention that this summer that she, Linda and I could get together in Philadelphia.  Linda has a sister with a house there.  Susan and I have never been to Philadelphia.  I want to do that.  I guess I need to rest so I can do that.  See?!?!?!  I don't want to miss anything, to give up, to loose out.  I want to see my friends, and talk to them on the phone.  I am just tired right now.  I am tired because of the chemo.  It is not always going to be like this.  I hope.  


It is Friday.  I can sleep late tomorrow.  I can rest for the next two days.  Maybe I can get outside and sit on the ground and pull weeds.  It is going to be warm tomorrow.  Maybe that is what I need to get my perspective back.  dirt under my nails.  dirt on my arms and legs.  A pile of weeds to throw in the compost pile.  Throw out the old dead weeds and turn them into rich dark, life giving compost.  Maybe that is exactly what I need.

Sunday, January 23, 2011

Eye lashes

I have eye lashes.  I am not really sure when they grew back,  but a few weeks ago I had no eye lashes at all.  None, Nada, bald blank looking eye lids.  And today, I have dark, long soft eye lashes.  Not necessarily movie star thick lashes, but I have plenty of them and they are as pretty as when I was 21.  And when I was 21 I had no idea I was pretty, but I knew that I had pretty eye lashes.  I was told that all the time.  I had not remembered that until yesterday when I was trying to brighten up my pale face and there they were.  sigh.  it made me happy.  it made me feel a little pretty.

And Friday night my friend Sioux come to visit.  We have not see each other for 4 1/2 years.  We had been the dearest of friends, sisters really for 20 years.  Our lives had an eerie parallel for as different our early lives had been.  And yet the first time we talked at a biker party standing in the parking lot with the group of people she knew better then I did, but did not really fit in any better then I had.  We had become fast friends.  We have dear beloved friends coming from those days, but lets face it, not everything that comes with the biker culture is the most positive experience.  But we had quickly become very close and for 20 years every important event in either of lives, good or bad, was shared between us.  We have 20 years of shared laughter and tears, joy, challenges, children, grandchildren, loss, and growing and aging and learning to love ourselves.  

And after not seeing her for 4 1/2 years it was more then like we had just talked last week.  Here again our lives had eerie parallels with divorces that wouldn't take and challenges that we never thought we would be facing.  I have to say that I am happier to have her back in my life as we each deal with these challenges.  Sioux lost a beloved granddaughter to cancer within the last year.  And now I see the fierceness of her spirit as she looks at me and wills the cancer in me to not mess with her.  She will not tolerate this.  And as much as I am accepting that I have this cancer, I recognize that protective fierceness.  I have seen it in my closest and dearest beloved ones.  Maybe that is why I can be so accepting of this.  I know that I have the fiercest creatures in the world in my corner.  Friends.  Friends that I love as fiercely.  Friends that hate my cancer more fiercely then I do.  Friends who love me fiercely.

And after a quick drive around Monticello and then Thomasville with lunch at George and Louie's we came home and sat on the couch and yarned.  That is something that Sioux and I used to do back in Lee County, craft.  Tie dye, ribbon embroidery, painting classes, rain sticks, wreaths, Christmas ornaments, soap.  She helped me the most with Spoonbillspices.  And we started the Mother, daughter, girls, ladies camping trips with our beloved Sarah who died of stomach cancer many years ago now.  And there we sat and yarned.  Making scarves on the knitting board.  Thank you again Ms Judy for giving us the term, "Yarning"  it is perfect.

And this morning we had breakfast and talked and then stopped at the church of the bat shit crazy, and I swear it was like Sioux and Mary had been friends forever.  They just fit together, their laughter sang sweet harmony with the quiet melodious words sliding across the room as if they had danced together in that space before.  We ate Ms Moon pancakes in our hands.  Their light moist flavors punctuated with the sharpness of blueberry.  I felt so peaceful and loved and protected.  Mr. Moon passing through in out as he looked in on his deer.  His gentle smile passing across each of our faces.

And then just as quietly she slipped into her car and was gone.  But I have her back.  We had almost lost each other.  Each of us holds a tentative string across the miles to each other.  Waiting to see.  That is the hard part.  Not just giving up and letting someone go, but stepping back and holding on to that thread hoping that somehow, the string will tug at your heart and you will look up and find them right there.  Right where they belong.  Right where you had always hoped you would see them.  Just like pretty eye lashes.  Staring open eyed right at you, fierce and loving.  And you look around your heart and you see so many faces there with that same fierce love.  And it does not feel like you have added to your life, as much as balanced it again.  That another little piece that should have been there, was right where it belonged again.

And yesterday I received a package from Ms Kim in North Carolina.  A Penzeys spice, oooooh, Raspberry Enlightenment.  Ms Kim says it is particularly amazing on veggies.  I can't wait to try it.  I will also want to play around with a little Dijon, olive oil and different vinegars and maybe a splash lemon for a salad dressing.  It smells wonderful.

And at Ms Moon's I got another gift!!!!  Ms Lis of Lis and Lon fame had made me the most lovely ribbon pin out of mauve and green and gold and I pinned it on my green wool sweater and it is perfect.  Oh, I love presents!  I love ribbons.

Thank you dear sweet friends!!!  

Wednesday, January 19, 2011

Quiet Day

Today was a good day.  I scheduled my work at home.  Which consisted of stuffing renewals.  I was able to get most of them done, but ran a little short on supplies, so I can finish then Friday.  I knitted, read a book, took a nap and was awaken by my cell phone ringing and someone calling, "hello", "hello", "Kathleen" and heard my back door open.  I was trying to take a nap, so I woke up  when the phone rang and wondered how someone could open my door and call to me and the dogs not bark.  Well, it was either a dream, or drugs.  That was the most exciting thing that happened today.  I watched a couple of bizarre movies, not the best thing to do when you are barely grasping on to reality.  But what the heck, it just seemed to fit my mood. 


I am not particularly hungry today, but I took the time to fix balanced meals.  Yogurt, fruit, nuts, seeds, grapenuts for breakfast; lunch was scalloped potatoes with a small salad of baby greens, tomatoes and cukes;  Dinner was turkey pesto, peas and scalloped potatoes.  I figure the scalloped potatoes with all the cheese and carbs would be good to keep up the calories.  It turned out to be a little rich, but wonderful in small portions.  But I am eating, and this is the tough week for eating.  But I feel good, although out of it.


Mr. Moon helped me to get my car into the shop to fix a ding that a friend accidentally put in my car while helping me to pick up my furniture last summer.  And he may have found a first possibility for my convertible.  It looks good on paper, we will see what he thinks when gets a chance to go over it.  How exciting.  I was planning on waiting for my birthday in October, but it looks like a wonderful opportunity might present itself sooner.  


I felt better today then after the last treatment, but it has been 5 weeks instead of 3.  I am tired, but not exhausted.  That is good.  Yes, I am a little out of it, but shoot, I ate, I rested, I read, I knitted a little, played with the kids, did some laundry, not bad for the second day after a treatment.  Hopefully tomorrow, I will have another good day tomorrow, early to bed tonight, in fact I am getting ready to head that way now.


Nothing exciting to say, it was one of those days of mixed weather, drizzly, then the sun came out.  It was not so cold, but it was damp and chilly late morning, early afternoon.  I love the rain, my yard needs it so bad.  The dogs and cats were pretty laid back and I joined right in.  And on the 28th of this month, we will run the PTScan to see how the treatment is going.  Then less then a week later we start the next round of treatments.  This time with one less chemical.  Dr. M acts very aggressively with this disease.  I am thankful for that.  I mean once you know you have cancer, you might as well get the best general with the best WMDs.  And then as the CEO of my own life, I rely on my general to fight the battle, and I negotiate the rest of my life and how it will adapt, adjust, survive the WMDs.  I suppose some might say that I am fighting this battle with cancer.  I really don't  see or feel it that way.  It is more like the fact that we are at war here in America with Afghanistan and I think we are still at war with Iraq.  But honestly I am not more actively involved in that war then I am in fighting this cancer.  I am just trying to live as healthy, alive and aware of each moment as I can.  And yet, I can feel that I am getting anxious for the PTScan.  I want the positive feed back that for the first time since April, someone says, there has been a change.  So far for the last 9 months it has been, no change, no change.  I am ready for a change.  I understand that this is not about curing or remission, but just to hear that it is possible to contain it, slow it down, have an affect on it will be a great moment.


Lots going on, that I am trying to keep it all together.  My ex husband, who is in a hospice nursering facility is back on the story of moving to Richard and Colleen's.  But I have been here before, and I am not going to let this stress me out.  And I have tomorrow off to rest again, and then on Friday work, then Sioux.  


A good day, life seems to be moving forward, something it has not felt much like for the last 9 months.  I am happy, time to start focusing on life, not death, put this cancer back into it's small little insignificant "c".  Something to get into perspective, and to live with. Live.  I like that idea.  And it does not matter how long.  Just focus on today.  A good day.  

Sunday, January 16, 2011

Sleep

I didn't sleep very well last night.  I was tired, but I had stayed up to almost 9 last night watching something on TV and when I turned off the light my eyes would just not stay closed.  Every hour I seemed to be staring at the clock.  I think I slept in between the staring at the clock, but it just isn't restful.  I am still tired this morning.  But I will go back to my 6:30pm bed time. 


 What is different?  Well, I did stay up later then normal.  And I have been trying not to take an Ativan every night.  Right now that seems ridiculous after not sleeping well.  But I just have this thing about taking pills.  I come from a generation where recreational drugs was common place.  I came late to that world, and basically danced along the fringe of that world, never really fitting in well.  I guess that is part of my problems with the drugs now.  I keep trying to dance just along the fringe of this world.  Physically I am right in the middle of chemo, and I have no problem with that, but taking pain pill, anti-anxiety pills, anti nausea pills, in other words pills that I am responsible for administering myself, that is where I am not so great.  I am trying, and tonight I will take that Ativan and I will go to bed early and I will try and stay in bed until 8.


So what can I do today to also help me sleep?  Well, I will clean the house up a bit, vacuum the carpet and mop the kitchen.  Finish the purple scarf for the Oncology Center.  Start a new one.  I finished one yesterday.  Brunch in Tallahassee after visiting a new Indian store with Janak and Geeta.  Maybe I will go to rehearsal for Steele.  I will stop by the grocery for cat food and dish detergent.  That should wear me out.  


Tomorrow is chemo........hopefully.  My appointment is not until 10:45, so hopefully I will miss the early morning rush.  I also hope that since it is the Federal Holiday for MLK Jr, that might also help to keep the crowd down.  And by the way, Monday is not Dr. King's birthday like I have heard all morning.  No, his birthday was yesterday, January 15.  That is my first husband's birthday.


It is supposed to get to 60 today.  It was cold this morning, but it is sunny and beautiful.  I love the color of the winter sky.  So blue, so bright, so much like a giant bowl over our heads, some how dimensional in its color.  The day before my scheduled chemo is always special because I have energy and desire to move.  I can not predict how I will feel this coming week.  I have to be back on my feet by Friday.  Friday morning I have Dr. Fishel coming up from Gainesville to meet my staff.  I need for him to meet the person I am training to replace me.  I think they will work together wonderfully, and I want to give them every opportunity I can to build their working relationship before I am gone.  I want both of these people and our program to succeed.  No, I want them to excel.  I want our program to continue to be rated as highly as it has been for the last many years.  How well they work together will have a direct affect on how successful the program continues in the years to come. 


Then Friday night, Sioux will be here.  I have not seen her for 4 years.  Is that all?  It seems so much longer.  So much has happened in those four years.  We were so close before and now when we talk it feels that way again.  She is a very special person.  A massage therapist, a drafter for architects.  A mother, a grandmother, a motorcycle rider.  A traveler.  A survivor.  A dear friend.   


Beautiful Sunday.  simply beautiful.

Saturday, January 15, 2011

Baby its cold outside

The weather guy showed the temperatures around the nation at 8:00 am.  It was colder (20) in Tallahassee then in Chicago, Kansas City or Denver.  That is just bad wrong. I plan to spend today in the house.  It will be beautiful and sunny, but cold.  Maybe at lunch I will sit in the sun on my back deck.  Maybe.  


Thank you all for your comments.  I don't do comments, mostly because I see this as a journal, and to start interacting with everyone is too overwhelming for me, plus I need to be able to write my thoughts without concern of other's reactions.  This is the best way in the world for me to get things off my chest.  To minimize the number of Ativan I need in a week, to have memories of what I am going through, without the pressure of dealing with my pitiful linear memory.  


But I do want to assure those of you who have been so kind and sweet to make comments, that I do read them, and appreciate your time in writing them and your thoughts.  


I would like to assure you, that the doctor and I are doing everything in our power to deal with this cancer.  I do not have low iron.  I have never had low iron in my entire life, and yet I have had to deal with low platelets my entire life.  I have a very high level of iron even as I write this post, so that was a good thought, but not it.  Also I have had Hep C for 30 years.  I have learned over the years how to manage it and honestly other then making me a little tired at times, it has not had a significant impact on what I have wanted to accomplish in my life.  Yes, it is part of the picture now as I am taking the chemo.  It is not the reason for my low platelets, but it definitely takes a toll on my body, so does have it's own impact on how I feel and respond to the WMDs.  After all, these things I am dealing with are affects of the chemo.


The biggest thing I have to deal with honestly, is to understand how to live with the cancer.  It affects your body differently then other diseases, and then when you look at the total picture, with work, stress, regular life activities, other physical problems already existing with a body and then you throw in WMDs.  Well, it is going to takes it own toll.  I do not refer to the chemo as Weapons of Mass Destruction lightly.  These are strong chemicals meant to effect cells.  That is the whole point.  And yes, I am disappointed to hit this wall, but it is part of the journey.  And it comes at a good time.  It comes at a time when I have to throw out a lot of the beliefs I have held about myself and learn to live with a new disease, a new person.  I assure you, if all that was needed was to give me platelets, the doctor would have.  But putting platelets in your body is not the same thing as your body making them.  And that is what is needed here.  I am not bleeding to death, so giving me platelets would be for not.  But I understand completely that we can not also push a lot of chemicals in on my body that will deplete an already low number.  That could cause internal bleeding.  


And as much as I hate to say this, it just might not work.  I mean I have always had the assumption that the chemo would "fix" things.  I know it will not make the cancer go away completely.  But I had hoped that it might delay the damage the cancer is doing to my body so that I could live for another 3 or 5 or 10 years.  That is not a guarantee.  And trust me, if I could eat my way to health, I would.  But that is not enough.  


I admit to eating whatever I want these days.  The same as I thought it out and made the decision to seek local treatment for this disease rather then racing around the world holding out for a complete cure.  I have also looked at my diet, which is mostly fruit and veggies, to stick with my diet.  I have enjoyed eating fried food more then I ever have.  But it is not something I eat everyday, or even every week.  I try and look everyday at what I eat and what I want and what I can eat, and enjoy it.  I decided I would rather enjoy whatever time I have left, then trying to force myself into any kind of strict diet.  I have friends who have faced these type of decisions before and the results are all over the board.  Some of the diets seemed like they may have helped.  Others spent the last of their life  giving up things they enjoyed in an attempt to prolong their lives as long as possible.





And all of this while I was living an amazing life, doing things I wanted to do, going places, meeting people.  Working hard to be good at my work, trying to learn as many things as I could about gardening, theater or whatever the interest du jour.  And I have very few regrets.  And now as I live with this disease, I am not going to beg another hour of life.  I will live for whatever time I have, experience whatever I can during that time, and try and make sure that the people around me know how much I love them, and how very very grateful I am to have them in my life.  


It is just human nature to ask the questions.  To make the suggestions on finding the lost item, or to deal with an illness.  Did you drink tea?  Where did you have it last?  Questions, that really do not help at all.  No, that is wrong.  They do help.  They help show concern, and help the person feel in a situation where there is nothing that they can really do, to feel like they are helping.  So I appreciate your comments because of the concern.  But the disease is not going to go away because I eat spinach or not.  I will not find the lost item because of someones question, but I will know that they are just trying to help.  


But it is now midday, and it is warming a little.  Ms Judy is on her way to do some yarning.  Ms Moon is home with Mr. Moon after a lovely date last night, Geeta is out working in her yard, and I hope to see her for a little visit tomorrow, and well, life is good.



Thursday, January 13, 2011

Disappointment

Monday I went to bed around 6.  I tried to do that again on Tuesday, but people kept calling to check on me. I really appreciate all the love and concern, but if I don't blog, or return an email, or answer the phone or if it takes me a little time to return a phone call, please be patient with me.  I am doing the best I can, but I get tired, and sometimes all I want to do is to just roll up like an armadillo or maybe smaller, like a pill bug, and slip in under the covers and sleep.  rest.  I did my best to increase my platelets by eating spinach twice a day for 2 weeks, then I did kale and arugula and then a week of collards, but it did not help.  But maybe rest will help.  


Wednesday Ms Moon and I headed up to Thomasville for my chemo treatment.  They took my blood and sent it off to the lab.  Then they stabbed me in the chest, OK, my port, but it feels like they are jamming a needle into my chest.  It isn't that it hurts or is that uncomfortable, just weird.  And then the word came down, no go.  The platelets have still not come up enough, no chemo.  I was so disappointed, not in Dr. M.  No, I am disappointed in my body for not being able to do what is needed.  I was not disappointed in my body when I found out I had cancer.  It never occurred to me to think that my body was letting me down.  But now, I do feel that way.  I understand that I have had 5 chemo treatments between the 2 doctors.  That the first treatments took a lot out of me, and I understand that I have Hepatitis C, which also affects the strength of my body.  But I am still disappointed.  


My calcium levels were also still elevated so that gave me a zomata treatment.  So at least we got that taken care of.  


The next chemo is scheduled for Monday, MLK Holiday.


I finished 2 more scarves, and one of the nurses fell in love with them.  I gave her one, and have made her another one.  I hope to take it and another one for the patience.  


After the zomata treatment, Mary and I headed to the Thomasville Goodwill.  It is a wonderful Goodwill.  We each found some things and then headed to JC Penney.  I had a gift card from a friend at work and I got 2 shirts with the gift card.  Thanks Robin!!  Then we had lunch at George & Louie's.  There was an adorable man there, that Mary said actually noticed me.  I was so busy noticing him that I did not see that he might or might not have been looking at me.  But you can be sure that we will have lunch there again.


The best time of the day was having pizza last night that Ms Moon made for Judy, Denise, Pat and me.  It was delicious.  I even had a tiny tini.  It is about 1/2 ounce of martini, but it hit the spot.  The five of us sat around Mary's dinning room table eating the wonderful pizza, laughing, talking, loving each other.  Mary and Pat throwing out lines from our up coming production of Steel Magnolia's.  Denise with her new hair cut, Judy animated, me able to sit at that table with these woman I love so much.  That was a little reprieve from the disappointment of not getting the chemo.  And it was a wonderful night.


Today I headed back to the office and got many things accomplished, but managed to get out at a reasonable time, around 1:30.  I stopped by the Moon home and Ms Moon had fixed a wonderful vegetable soup and sent some home for me.  And it was perfect, a little baguette and Ms Moon soup.  


I am home now, my tummy filled with veggie soup, and I have finished entering numbers into my data base so that I can generate my reports tomorrow.  I have my work set for next week that I can do at home.  I can rest more here.  I do not have to take phone calls, people can not bring in more things that I need to do.  I can focus on entering the numbers, so many many numbers.  And I can do it quicker because I can focus just on the numbers.  And I can stuff the renewal packages.  They are all folded.  Hopefully I have enough handouts, etc.  to get them done next week to be mailed by Friday or the following Monday.  I feel like I am taking some pressure off my staff.  It gives me a link to the office, and something to focus on.  I get to claim the hours I work at home, so that helps me not use my leave as quickly so that I can retire in May or June.  And most important, I can stop and rest when I need to.  


And so hopefully next week on Monday I will finally have my 3rd chemo treatment.  The last one before we run the PTscan to see if it is working.  We think it is.  It is not getting rid of all the cancer, but it is slowing it down, extending my life, maybe by days or months or years.  Who knows.  


And then Sioux will be here.





Thank you all my dear friends for your caring, your sharing, your concern and love.  I am hoping to eventually get back to a more normal life once we get these treatments back under control.  I hope to live many years yet, and for those of you who continue on this journey, know that I value each of you with all my heart.  And I promise to stay the best in touch I can, but be patient with me.  I can not answer every email or phone call every day.  Sometimes, I am just too tired.  But know that I appreciate your love and concern.     

Monday, January 10, 2011

Gray and Rainy day

I think if you said hello to anyone in the greater Tallahassee area, the first thing they would say to you would be, "What a gray and rainy day we are having."  It is this giant fog of wet, cold, close, miserable, reflected light, no direct light, dank and dreary, winter gray day.  And I was bone weary when I woke this morning, and the cold crept under the door, across the floor and up into my bed and settled in deep down inside me.  But I got up and did my routine and headed off to work.  After all I am only working 2 days this week.  I only need to work 4 hours.  Just do the best I can for as long as I can.  But it didn't work out like that.


There was just so much that needed to be dealt with.  For the most part everything keeps getting done as best as the rest of the staff can do.  But it has been 9 months that my staff has been working under these conditions.  So I just started answering phone messages, returning email, process reciprocals, took phone calls, proposed changes of procedures, reviewed financial paperwork that I will have to finish figuring out tomorrow.  I pulled up and sent off applicator lists to field staff and I prioritized the work for tomorrow.  And shortly after 1:30 I said, stop.  If you continue to push yourself when you are tired you can get sick, you can cause delays with treatments, stop.  go home.  And so I did.


and I am tired.  


My problem is deciding should I push myself a bit to keep up my stamina, or am I only wearing myself out.


I don't know.  But as tired as I was, my mind was clear and I got a lot accomplished which felt great.  


Vicki made it home, but they are getting hit hard now with the winter storm.  


I think maybe I will take a book to bed and fall asleep.  I finished the Maeve Binchy book I was reading.  She is an Irish writer I enjoy.  


Several of you have asked me to let them help me to clean my house, or do laundry or dishes.  Something to help.  I appreciate that more then you know.  And I do plan on asking for help.  But when I need it.  Right now I need to do as much as I can.  It is a mental thing of not giving up.  It is important to me to try and keep as normal a life as I can, meaning, feeling like I can take care of myself.  That is so important.  So please be happy for me that even though I say I am tired, I am still able to take care of myself.  I will need help, and I will ask.  I will.


It is still gray and drizzling outside.  It is warm inside.  

Sunday, January 9, 2011

Sunday afternoon

Vicki and Ken called Wednesday night around 9 pm to let me know that they would be getting in around 3:00 in the morning.  My first response was, "fine come on in."  Then I realized it would be better for all of us if they stopped and got some sleep or at least rest and then came in at a decent time on Thursday morning.  So when Vicki called back, I asked her to stop and that I would see them in the morning.  That sounded like the right thing to do.  It made sense.


But for the rest of the night every 30 - 45 minutes I woke up and stared at the clock and thought, why didn't I tell her to just come in and go to sleep here and it would interrupt my sleep, but just for an hour or so and then we would have all could have gotten some sleep and when they woke up, they would be here.  Oh well. 


I finally got up around 5 and cleaned the house again and wore myself out before they got here mid morning, and I was exhausted from waking up all night like a child on Christmas Eve.  But she and Ken did get her, and it was wonderful having her here.  I didn't care what we did, just as long as I got to be near her and to talk and laugh.  We did a lot of laughing while she was here.  The only problem is that we seem to speak our own language and some people don't understand it, so they think we are laughing at them.  We are not.  We laugh at ourselves more then anything.  We laugh at our crazy ideas, funny things that pop into our heads, memories of things that have happened over the past 50+ years.  We just laugh.  I think more then anything it is because we are just happy to be together.  


We ate in Thomasville on Thursday night.  Friday we drove to see the lighthouse in St. Marks.  Ken had never seen a live alligator so he was thrilled to get to see and photograph many many alligators.  And all kinds of birds, and the weather was cold and windy, but bright and sunny with a blue, blue sky.  We had lunch sitting in the sunshine at the Cafe on the River.  And in the evenings watched movies at home.  I had already DVR'd Nanny McPhee Returns, Toy Story 3 and the Sorcerers' Apprentice and the three of us watched those as we ate Godiva chocolate.  Then we watched, The Devil.  A movie that takes place in an elevator.  It was scary, but I was able to watch more of it then I would have expected it.


Saturday we drove into Tallahassee and walked around the Capitol.  There were people dressed up in Victorian era clothes and were taking pictures in front of the old Capitol.  This was a lot of fun for Vicki and I because we used to dress up in Southern Antebellum hoop dresses when we were growing up, all the way up to High School.  So it was fun to see these people in their outfits.  We then went to see the latest Harry Potter at the IMax.  We enjoyed the movie, but honestly it was a little intense for me being that close to that big of a screen while things are being blown up and fighting and such.  But it was a lot of fun anyway.


On our way home we stopped to see the Moon's.  Ms Moon invited us in to a dinner of venison vegetable soup and biscuits.  It was perfect.  And Vicki was so happy to be with Mary.  And we had our pictures taken together.  And it really was perfect, just being with friends and filling your mouth with the south.  Then Judy and Denise came over after finishing working at the Beau Turner place for the hunting camp.  Vicki was so happy to get to see them while she was here.  What a wonderful day.


This morning we spent a little bit of time together.  Vicki and I got to watch the Moment of Nature on Sunday morning, that we call the quiet minute, which is seconds, not a minute.  And then Vicki was off.  Back up north, hopefully missing most of the storm heading this way, hopefully missing most of the snow. She will be back.  And when she comes back, the girls will return to St. George for another sweet weekend of sun, surf, friends and laughing.


Then I made my spinach and cheese puff pastry rolls, and Napoleons for the Fancy Pants Camellia Garden Circle.  Jennifer hosted the meeting today in her lovely home.  She had set the table with her good china, sterling and crystal.  It was so lovely, and we sat around and drank wine and talked about what we needed to do to get our gardens ready for spring, and what we should be planting now, and then just enjoyed each other's company.  it was a lovely couple of hours, and then I got to talk to friends and family this evening on the phone.





And now a new week.  I will go to work tomorrow and Tuesday; chemo on Wednesday.  Then a 3 day weekend, and the following weekend, my friend Sioux from Ft. Myers is coming up to see me.  She was as close as a sister to me for 20 years.  When I moved here from the Ft. Myers area, I came alone, my friends stayed there and maybe felt a little betrayed with my leaving.  It was all so complicated.  But now with Sioux back in my life, I am so very grateful, and I can't wait to see her in 2 weeks.  By then I should be strong again and rested.  Another reason to be grateful for this disease.  My friends are making an effort to come and see me.  How lucky can a person be?  I have such loving and wonderful friends here, and now to have my dear friends from my previous lives, coming to see me, I am in awe at all of these kind, wonderful, giving people.  And I laugh, and remember so much fun and adventures.  I have had such an amazing life, and each day, a new opportunity for more laughter, more smiles and chuckles.  More hugs and love.  And friends.

Tuesday, January 4, 2011

Stressed out

Sometimes you know this is not what you want to do, probably should not be involved in.  Sometimes you should put yourself first and take care of yourself.  But then you wouldn't be me. 


It is only Tuesday and I am already so stressed out because of my ex-husband.  He is in Tennessee and in the hospital while they straightened out his medication.  They think they have him ready to be released, but it appears that the only place they have to send him is a shelter.  He does not qualify for a nursing home because he is too ambulatory, but he needs some assistance.  So the hospital has been calling, the psychologist have been calling, his brother has been calling, he has been calling, his friends have been calling.  Oh my goodness, one of the main reasons I got divorced was to get away from the stress, the drama, the insanity.  And now while I am tired and worn out from my own cancer, here he comes.

He will be somehow getting on a bus in Tennessee and driving to Tallahassee.  He is supposed to be here either next Monday or Tuesday.  He will stay here until his friends from Weeki Waki can come and get him and my air stream over the weekend.  I am loaning them the air stream so that Larry can live on the property with Richard and Colleen, but not in their house.  All of his is stressing me out.  Yes, I understand that I should just turn my back on this situation and walk, no run away.  But how do you do that?  How do you turn your back on someone who is in worse shape then you are?  How do you abandon someone to a shelter?  I can't.  It is not who I am.  I am trying my best to keep my participation to a minimum, and yet, do what humans should do for each other.  Make sure that they are some place safe, protected, that they have food and shelter, and friends or family near by to help.  That is all I have to do, but it just feels a little overwhelming.



So he gets here next Monday or Tuesday.  I have chemo on Wednesday.  So he will have to stay in my house while I am at the Moon's.  He will watch the animals while I am gone that night.  Then I will be back on Thursday, but I will need to go to my post treatment. Then hopefully Richard will be here on Saturday and take him away.  


And I am trying to start my retirement paperwork.  Thank goodness for Richard, he is helping me get the phone number to the counselor I need to talk to, to get my questions answered and so I can start the paperwork for my retirement.  Once that is done, then I need to start working my way through the Social Security nightmare to apply for disability.  I hope that will help me with my insurance situation, and maybe provide me with a small amount each month.  I have worked for 40 years paying into Social Security.  Sigh.


Each situation on its own, is not problem, but trying to do all of this and to get the house ready before Thursday when Vicki gets here, and then the next day, Sioux.  that is a lot, especially before chemo and Larry.  


Oh, I am just tired, and whiny and overwhelmed by everything hitting me at once.  I am sure that once Vicki gets here I will be in a much better mood and the stress will melt away when I am in her arms laughing and talking both at the same time.  We only have a few days together, but I will take it.


Tomorrow I will go back to the office, and then I will be off on Thursday and Friday.  I will work on Monday and Tuesday, then chemo on Wednesday, Richard and Colleen will be here for the weekend.  Then the following week, nothing, peace and quiet.  


Sorry for the whiny post, it will be gone tomorrow.  Tomorrow will be better.  I got a lot accomplished at work today, and have some projects to get completed tomorrow, and then Vicki.  And then Sioux.  Life is going to be good.  I am going to enjoy my company.  I am going to enjoy my night with the Moon's next week.  I am going to rest and enjoy my Sunday after all my guests leave on Sunday, filled with happy memories of time spent with dear ones.  


I will be happy to help my ex to get someplace where he can live the rest of his life, safe and protected.


OK, I feel much better, I just had to get it out.  It has just been too much this week, but whining it out here, has helped to get it out, release it to the universe and now, back to taking it day by day.  Well, that and Ativan.  I think I will go read a few pages in my book and then go to sleep.  Tomorrow is another day.  


And each and every night as I lay down to go to sleep, I close my eyes and say thank you.  And I try and think of some of my happiest moments in the day.  I do this every night.  I think it comes from the Bing Crosby song, "Counting my blessings" that he sings in White Christmas, or is it Holiday Inn, or maybe both.  And since I think that thoughts are energy.  And energy can not be created or destroyed, only changes form.  So once I say my thanks, express my gratitude that goes out into the universe as positive energy.  You can call it what you want, but it helps me to sleep, and wake up rested and ready to the good things coming the next morning. It really does help to reduce stress.  Being grateful.  And I have so many things to be grateful.

Monday, January 3, 2011

No Chemo for me

This is the second time that we have had to postpone my chemo because my platelet count was not right.  Dr. M said that it could be that the previous chemo affected my bone marrow.  He did not seem to act like there was anything we needed to do, which is a good thing, but it does affect the counts.  And here I had eaten spinach twice a day for two weeks because the Internet said that green leafy vegetables are good to eat for platelets.  Dr. M said that in my situation there was nothing wrong with eating all the spinach I could, but that it was not going to be enough for my platelets.  OK, then I am stopping that practice.  The last thing I want to do is to look like Popeye.  I mean those forearms, really. And not only that I have plenty of collards left from New Years and Ms Moon shared some kale and arugula, so this week's green leafy vegetables is taken care of. 


And speaking of Ms Moon she got a picture of Dr. M and me at my visit.  It is a wonderful picture and you can see his halo.  I think he is better looking then in the picture, but he is pretty darn cute in the picture.  Because I am lazy and also to help myself to keep this journal I have vowed only to journal, not post pictures, so if you want to see Dr. M you have to go to Bless Our Hearts.  Of course, once I am faced with the right picture and enough time to sit down and figure this picture thing out I am sure that I will throw the old idea out.  But at this point I really have not been very worried about my lack of photos.  sorry.


Dr. M is really an amazing doctor he knew I was disappointed about putting off the chemo, so had come armed with good news.  There is a marker in the blood work that I do each time and from the last blood letting to this one my marker had gone from 27 to 8.  He said that he would never completely rely on markers, but they give you a sense if things are working.  And a drop like that is welcomed news.  After Dr. B meeting with us and telling me that there was no change and blah blah blah, I was getting so anxious about repeating this process.  I know now that something good has happened and we will have to get the PTscan to see exactly what, but I am not dreading the scan any more.  And Dr. B talked about changing my chemo treatments from Mondays to Wednesday because it will help me to loose less work that way.  He was so kind about it, if it makes my life better, of course we will do that.  Then I told him about hearing about how they were adding lung cancer to the miracles of aspirin.  He said he had not heard anything about it, and of course while my platelets are down and I am going through the treatments he did not want me to start another blood thinner.  I understood completely.  But he said he would look it up and see what they were saying, and I am sure that he will.  He also thought about it for a few minutes and started discussing all the ways that the low dose aspirin helps people, and he said that once I am through with this portion of the treatments that affect my platelets, no it was not a good a idea, but after that, he did not see any reason not to do it.  I appreciate that he talks to us and thinks things out rather then just saying, "no".  Then his nurse Bobbie called and told me to stop my calcium supplements.  Hmmm, having too much calcium in the blood is a marker of cancer affecting the bone.  It could also mean a lot of other things, so I will wait until I see him next to wonder about that. 


So with a free day Mary and I walked around lovely little Thomasville and looked in the stores and spent time in the antique mall.  Had tea and yogurt and then lunch at the Mexican restaurant. And still made it home by early afternoon.  


And since I got home I have had a visit from one of my dear past co-workers, Lewis Buckner and his wife, Dot.  Sweet wonderful people.  Then I heard from Chuchy


So no chemo, but still all in all a wonderful day.  Shoot any day with a friend laughing and talking is a wonderful day, and when that friend is someone like Ms Moon.  Well it is as charming as her name.  really.  

Saturday, January 1, 2011

Happy New Year


Happy New Year.  The first day of a new year, 2011.  A new beginning, new opportunities.  A hopeful new season.  For breakfast I ate some greens, the black eye peas will be done soon.  I like to start the day right off with luck so as soon as I was up, choosing to sleep in until 8 am this morning, I was cooking the greens, chopping onions and carrots, peeling garlic.  The house smells like new years; well how we do new years down here anyway.  It is warm and sunny and beautiful, a perfect way to start this year.  And I will clean up the guest room this morning and then off to visit Ms Judy and Ms Denise, then over to the Moon's.  What a wonderful way to spend the first day of a new year, with friends.  And tomorrow off to visit Janak, Geeta and Baa.  Sigh, a lovely weekend, and then later this week Vicki and Ken will be here, then Sioux, and then soon a reunion with the ugly sisters, Luann and Sharon will meet here.  I haven't seen them in so long.  We used to mutilate at Midlevel fairs.  Removable, reusable latex wounds.  Ah, we had some kind of fun back then.  


So lots of wonderful things for 2011.  And I hope to take advantage of them.  I will be armed with the lessons of 2010, balance in all things, a little time to rest, a little time to do.  Some happy laughing time with friends, and then quiet times alone.  Remember not to rush over the moments, savor them and enjoy.  Of course, I have an advantage in the resting part in that is something my body has been asking for these days.  

Last night I stayed home and had a quiet evening.  It was lovely.  The dogs and cats and I watched a Carey Grant marathon, ate mussels and cinnamon buns.  I was in bed by 10, it felt lovely snuggled down in my bed with my sweet "kids" all around.  A lovely way to spend the last moments of 2010.  

May this coming year that has started so bright, a beautiful morning filled with sunshine, be filled with hope and opportunities.  And may this cancer be held at bay, and maybe I will even get better.  I am hopeful and this is the time of year to do so.

Happy New Year.