Sittin On A Porch

Sittin On A Porch
Our little back porch

Thursday, September 30, 2010

Warning, Warning Will Robinson, Danger, Danger

Do you remember "Lost in Space", the TV show from when?  I don't remember, 1960s or was it 1970s? My favorite part was when the robot, tall with long extendable arms and flashing lights in and on his head, swirling around madly repeating, "Warning, Warning, Will Robinson, Danger, Danger!  

This is my way of warning you that this blog will contain some difficult information.  Yesterday Dr. B was on hospital duty so after the lab results came in, he took some time to come talk to us about the treatment, and he dropped a bombshell on us.  He looked straight at me and told us that he had already given us his prognosis of the success of the treatment.  It was not what any of us had heard before.  It was not what we had wanted to hear.

But before I go there, I first want to apologize for asking Mary to blatantly solicit followers.  I write this blog as my journal.  I read every comment, but admittedly, I comment back on so few.  And yet looking into the faces of people that have come to my blog and signed up as followers for this blog, do provide a confidence, faces to picture and love of people who have come over maybe once, maybe more often and spend  few moments sitting on my porch.  I have struggled some times feeling that a few of my posts my have contained such intimate information and yet I put it out there, because for me this blog/journal is how I sleep, how I talk to myself, my conscious, my Jimminy Cricket and I try to as honestly as I can, each moment make a record of this journey and all the side roads and twists and turns.  And having those travel on this journey with me has lightened the load for me, but to what extent have I dumped this journey on others who now pick up a tiny piece and share this journey, helping to carry the load.  Thank you, I will never be able to express how much this has helped and means to me.  So please forgive my blatant solicitation on Bless Our Hearts.  I don't know what came over me, I just looked at Ms Moon and Judy and said, one thing I want to accomplish is to have 25 followers, and you responded.  So a silly request made under new information, and another gentle wake up call from the doctor that this journey has changed, humbles me by how many of you, with out knowing why, sweetly came by and signed into this blog. Again, thank you.

Dr. B comes in to discuss the labs and to let me know if this would be the third treatment.  We had already played find the vein, and it was quite a challenge.  This is the second time this nurse had been the one to insert the temporary port where they feed the premeds and then the WMDs (weapons of mass destruction) into my veins.  The chemicals that are supposed to search out all the insane out of control, what are they thinking these cells reproducing in the wrong way, tiny, wee, party cells that have gone Rogue, if I may use a favorite term often used by Republicans and Tea Party people.  But it is a good term to use concerning these screwed up cancer cells, my little "c", my body taking a journey that I truly never guessed would happen to me.  

And wouldn't you know it I turn out to be one of the 3 - 4% population of people who get a cancer where they do not know the source. I have a metastatic cancer from an unknown source.  A small "c", with a long name that basically says, I have no idea what you are.  And yet it has launched a journey that has been so wonderful and terrible at the same time.

And yesterday as we were talking to Dr. B, I don't remember how it happened, but Mary, Judy and I all picked up that there was something wrong with what we thought this journey was about and what Dr. B thought it was about.

My cancer, according to Dr. B, is incurable.  Worst case scenario, less then a year.  Best case scenario, 3-5 years.  IS this a joke?  I mean people who go to prison can get a life sentence or 3-5 in the big house.  

I have just had 50 mg of benedryl, and I go foggy as he talked.  Not really scared, but more like a slap in the face.  Judy, presses for the whole story from Dr. B.  Our world has just been turned around, upside down.  Dr. B states that he has already told us this information.  We are all animate.  We have never heard any of this information.  I have never worried about the end of the journey because I wanted to experience each moment and not skip or miss all the sweetness and kindness and giving and love that so many people have given me, and now, I have to tell them, once again, this is not quite what we hoped for.

After Dr. B left this adorable little nurse came in and told us that she had colon cancer.  Stage 4.  She had a colostomy bag and a feeding tube.  At 78 pounds they told her she had 3 years.  Never give birth to a child, only have months to spend with the husband she loves and adores.  That was 10 years ago.  She has a 5 month old now.  We can not always predict how the journey will proceed, to end, it is not all science and best guesses by the doctors, it is also up to the person on the journey.  I am sure for as many stories that I could find about survivors living full and happy lives after they have been given their death sentences, there are also stories about people who were good little robot patients and followed the doctors diagnosis and died at their given expiration date.

I am not going to use the doctor's diagnosis as a road map to the end.  I am not going to focus on the end.  Well, other then getting my will finalized, training people to replace me at work, talking to Rich about my retirement and are there any adjustments we have to make with this new information.  Talk to Susan, Rich's sister the doctor and get a second opinion.

So what will this journey look like?  Well, I know I am not going to make any drastic changes.  Right now, this glorious morning as I sit on Luna de Casa back porch, listening to Elvis crow in the morning, the dogs munching their breakfast, bird calling back and forth to each other, Luna the cat calling her insistent cry to be fed as she marches up and down through the gardens, I know that I want my life to be right here.  No, not at Luna de Casa, but my place.  Snuggled up in a wooded area that 3/4 of the property is a cleared pasture that I have been planting an orchard and vineyard in.  I want to clean out my veggie gardens, my flower gardens.  I always feel stronger and more connected when I am sitting in a garden, weeding or planting or harvesting or simply admiring the beauty of the crooked rows, the tenacity of the plants, the micro environments that bring caterpillars that will burst into their gaudy wings and will flit from flower to flower gathering pollen and nectar, providing movement, grace and beauty to my little world.  I want to spend time with my labs, my cats, chickens and rabbits, feed the fish in the lotus pond, fill the nectar in the hummer feeders.  I want to live the sweet, beautiful life I have, right here, with my beloved ones.  Yes, I do want to do more traveling.  Vicki and I have planned to go to Great Britain, to Scotland to see our property, in England to walk along Hadrian's wall, to have high tea in the Pump house in Bath, to stare at Stonehenge on a foggy, dewy morning, and Avery.  I would like to travel to the Pacific Coast Highway in the height of summer to search for the Anna Hummer, yes, I want to add a few more birds to my life list.  To ride a motorcycle again, not drive it, just play opossum girl on the back, clinging on tight as we fly through the air.  I would like to go up in a open cockpit plane , I really would like to wing walk, but I have yet to find anyone with that type of plane who thought this would be a good idea.  I guess that is the beginning of my bucket list.  I have done so much in my life, and I don't plan to change that now, balance my life here with my job and travel.

Maybe the lab results will tell us more, something different maybe.  I am not the type of person to let go and give up, to get angry, ask why or throw myself into despair.  The science will help guide us on the journey and in three weeks they will run those scans or X-rays or whatever they need to see if this chemo has made any difference.  Will there be more hope?  I don't know, we will have to wait and see.  But without fear and trepidation, I have to be clear minded and strong right now, to see what I have, a new idea of this journey.  

Remember if the doc is right, this is not new, this is how it was last week, I didn't know that, but nothing is different from last week, but the perspective. A perspective that is shared with so many beloved, and for my dear Ms Moon and her support Mr Moon, and the kids, for Judy and Denise.  They are the front line, they are the ones that share the emotions that save me.  Judy is angry about how we found out and how this was handled so badly.  Mary is sad, I am turning to science and the tests and their results.  That gives me 3 weeks that I can be in denial before the science either elates or slaps me.  I know I will have to take the emotional journey, but when you are angry or sad you may not make the best decisions.  Say the right things.  And because of the amazing love and energy that Judy and Ms Moon give me when we are going through this process, they help me to have the time to take to let everything sink in.  To decide what I do next.

And then of course there are all my dear wonderful friends at the Opera House, and at work, and my beloveds like Vicki and Susanand Linda, friends in Spain and the Netherlands and spread across this beautiful country of ours, way too numerous to name.  Thank you all, and for you who came over after my "Make a Wish" moment with Mary, saying, just 25 followers, not 24.  The number seemed important, and as you responded and the count went higher, it was not as important as a number.  No the fact that you are such kind and caring people, you listened to Ms Moon's request, and because you love her blog, her language and thoughts, her love and anxieties, her sweet caring self, you gave me my only wish.  Thank you.  

And for all of my beloveds, I wish I could have told you this turn of events in a more beautiful way, maybe with a more hopeful ending to this journey.  But it is not over, and just because they can not cure this little "c", I have never been good at following directions that I don't believe in.  That is how I ended up in that corner in Kindergarten standing next to Vicki.  And oh, how important that moment has been in my life.  Like meeting Jennifer in second grade, like meeting Susan and Linda at UF, like meeting my dearest Bob at work 25 years ago, and Debbie and so many others who are such a part of my life.  Every turn on my journey has held experiences that have led me here.  Now I will continue on this journey and live each moment, like sipping martinis on the Moon porch with Ms Moon and Judy.  Like sitting across the table at Essence of India with my Rich, or across my desk from Bob or Phyllis.  These are each precious moments, the breath of life, the simple easy to miss moments in a busy world.  That is it, my world seems slower today, more clear, more confusing, but again, if I stay right here for this moment, fingers clumsily gliding across Ms Moon's Mac, I am still so very very grateful for this journey, and the knowledge that I did not have on Tuesday.  Today I know a new story and a new journey, one not given to hope, but I say right now, I do feel hopeful that this journey will continue to be as amazing as it has been these last 6 months.  And that I am strong enough to face and cope with all those things still to come.  And I will not be afraid or angry.  Sad, maybe, thoughtful and meditative hopefully, and welcome the joy and love and kindness and sweet life.  And then where and when this journey will go or end, I don't know.  I hope I know at the end, that it is the end and that I look straight at what will come after this journey ends.  And that those left here, will sometimes think of me and smile because of a moment, a simple point of time where we shared something.

Thank you all, and now you know that this journey is probably not heading where we thought, and if you don't want to take this journey any farther.  Then we will pull the train over and hug and kiss and wish you well.  Thank you for the time you shared with me sittin on my porch.  And know that I understand completely, each of you are on your own journey, and mine just may be going in a different direction.  I appreciate all the comments, love and support on my little blog and for Judy pushing me to keep a journal and for Mary helping me to start this simple journal blog.  It does help to let go of yesterday and to face today, less burdened.

This is not the end, this is just another twist and turn on this journey. 

Monday, September 27, 2010

What was I thinking

Friday they told us we would have to empty all of our file cabinets and separate the records older then 6 years old to be shredded and then box up the records less then 6 years old to be stored in the warehouse until their date of shredding. This is a huge physical task for my 4 staff in Tallahassee.  And the largest part of this project falls on the shoulders of my 3 regular staff.  So Friday, today and tomorrow I am handling the phones, doing the daily data entry, scanning and writing of correspondence as well as the need to do items for my own job.  We all worked hard today.  I had pizza delivered for lunch.  I was afraid that with the pressure of the time frame not to mention the sheer physical work that they might leave for lunch and not come back.   Tomorrow it will be subs from Publix or chicken from Zaxby's.  They are a great staff, but I haven't worked more then 10 - 8 hour days in 6 months, and you know what?  My stamina is not what it used to be.  Ok, I am tired, tired to the bone.  literally, to the bone.  No, the shin splint feeling is gone, thank goodness, but it left an over all feeling of exhaustion.  My legs feel exhausted, my arms, but moving around and doing things seems to help, so I try not to sit around and do nothing, but to stay active.  And today I was active.  I wanted to go to the Stage Company Board meeting, but by the end of the day I had worn myself down to the point of having stomach problems.  And I have to be there tomorrow.  We need to get this project down by tomorrow at the close of work.  Will we make it?  I don't know, but they will have enough done that we will be able to finish on Wednesday f we have to.  They will just have to wait if we don't get it done.  We are working as fast as we can.  

So I am tired, but I still managed to make it for an 8 hour work day.  Ok, granted it was really pushing it, but I was able to do it.  And I can do it again tomorrow.  I will be tired, but I can do it.  Then on Wednesday chemo treatment 3.  That is right, this is only treatment 3.  How can I already have so many different side effects and feel so tired with just 2 treatments.  And I will rest on Thursday and depending on how I feel on Friday we will see what I will do.  And bring on the side effects.  They aren't fun, but they sort of go with the journey, and as much as they take a lot of energy and focus to deal with.  Afterwards though I feel like I have survived, I am strong and I can do this.  After all, all of these side effects including the exhaustion, the aches, stomach problems, etc. are temporary, passing, I am going to be around long after they are gone.  I hate to focus on the end of the journey, but when it comes to the side effects, it does help to keep it all in perspective.

So another long day tomorrow and then chemo.  Funny all I do for chemo is sit in a recliner and let them feel my veins with premeds and then WMDs.  Doesn't seem that should be so hard, but I guess filling your veins with these mad chemicals is harder on my system then it would seem.  And I will stay with the Moons on Wednesday night, and Ms Moon will be so sweet and care giving.  Just what you need after chemo.  And Ms Moon and Judy will be there at the hospital with me, watching over me.  Yes, it is starting to get harder, but with all the beloveds I have surrounding me, I know that this journey is so much easier then what so many other people have.  I still feel lucky, tired, but so very very lucky.

Thursday, September 23, 2010


I have been hiding lately. Not returning many of the phone calls I have received, not wanting to email or blog, just hiding. Maybe it was from having company for an entire week. I love my Dad and we had a great visit. I got back to eating better and all around it was a good choice to have him with me. But I am not used to having someone around 24/7 and maybe my with drawl into myself is partly in response to the visit. I don’t know. I am an entomologist, not a psychologist. And I am not a normal entomologist. I guess that is no surprise. I spent my time at college working in an USDA-ARS lab rearing insects not killing them. I did not take any classes on how to control insects. I took agriculture entomology classes where we did discuss pest suppression, etc. But I never took any classes focused on residential pest control. And I am still not particularly interested in controlling residential pests. I am always getting questions on how to do it, and I always refer them to my friend Kim who is extremely knowledgeable about that type of pest, along with mosquitoes. I have to admit that the amount of knowledge I gained about any of that, is loss in the recesses of my brain.

No I love to watch insects interact with their environment. I grow plants specifically to draw in certain types of insects to have them in my gardens. I am always bad about spraying my gardens with pesticides so I usually have to share more then half of my crop with the insects, and really I am ok with that.

But back to my hiding. I have talked to so many different people with cancer. Some never discussed their cancer with others outside of their very close team, which usually consisted of a relative or partner. I have not met as many who chose like me to put it out there and take a group of people with me on this journey. And everyone who I have invited on this journey has been there for me and has been so kind and gracious. Maybe because this time last treatment I was throwing temper tantrums and being so very nasty, well for me. I was so self involved and righteous and such an ass. And I swore this time I would not be such an ass. It is bad enough how much help I have to ask for, I don’t need to then punish these people who have so graciously and kindly volunteered to join me on this journey.

Maybe that is another reason why I am withdrawing into myself. Although I have talked to many cancer survivor and many of them had times of self exile. I don’t want to go anywhere; I just want to be home in my red chair. My comfortable faded, beach house vomited umbrella chair with the big ottoman that I rest my poor left foot on and hold ice on it. I want to be in my house with my dogs and cats and maybe a short visit from friends, but short. I don’t really want to talk. And folks this is only 2 chemo treatments. What happens to people who have years of this treatment? Do they have times of desired self exile? How can all of this happen in such a short time? Why did I go so public in the beginning and now want to just hide from it all? And I don’t want to do anything. Not crochet or knit, not cook or garden, maybe read and take myself to another world, another place, other characters. Even my visits to Ms Moon I am anxious and nervous and want to leave as soon as possible. And Ms Moon’s porch visits have been my salvation so many times. And the dear intelligent conversation of Ms Moon is more then I can keep up with.

Am I just tired of the cancer? I have a very low thresh hold to being sick for long times. I usually grow quiet weary of being sick, and even though I do not think of this cancer journey as being sick, it still falls into that category. I am tired of dealing with the cancer. I want to be normal again. To have energy to have intelligence to be able to think things through. To not feel like everyone is looking at me and thinking, “poor old scrawny bald woman.” And I know they must think that by the sorrow in their eyes. And I do look old and even though my belly is bloated from the chemicals affecting how well the entire body functions work, the rest of me is scrawny looking. From lack of physical exercise my muscles are hanging and my skin is loose and wrinkled. And because I still have gotten back to being able to drink 64 ounces of water a day like I did before the radiation, my skin also looks dry and parched. I realize that I am way more focused on this then other people are. And I know I see things in a bad light these days when it comes to my body, and I think that is another piece to the puzzle of my hiding.

I rarely think that something is the product of one action. Usually all events are caused by a series of other events, therefore when we look for one answer to a problem we are going to miss the rest of the reasons and the outcome will never be what we expect because we have not taken everything into consideration.

So I see the many causes of my self exile to the inside of my house. And today is Geeta’s birthday and I want to see her for her special day. So tomorrow I will have lunch with her, and I can do that. I would rather go home and hide under the bed, but she is such a beloved one that I will act normal, for me, and she will never know how uncomfortable I am being out in public having lunch. I will focus on her and her sweet hubby and enjoy our time together. And then I will scurry home to my sanctuary and return to my solitude.

I am still working. But I have quit wearing a scarf on my head and have gone back to being bald in the office. It cuts back on people coming into chat. So I can sit behind my computer screen and work and not have to be around people. Then I can sneak out the back door. And the people I want to hide from more then any are the ones that are being the most kind and worrying about me. I am a little afraid of being a bitch, a self involved jerk. I will go to Ms Moon’s today and sit on her porch and enjoy her sweet self while we talk and laugh. I will hold my fear of being away from my home deep in the dark place in my heart, and I will try and not monitor every word I say watching for meanness. I will try and relax and enjoy the company of a very beloved one. And I will call Vicki. I have barely called her. And she knows me so well, so she has been patient and left it up to me to call when I am able to talk. She is so dear, but even talking to her is difficult. I am not doing anything but watching my plants shrivel up in the heat and lack of moisture. I do not see or go or do anything worth discussing. So conversations are hard, and now with the loss of chickens and my plants dying I feel so much loss to this little “c”. By my lack of desire to do anything related to the world, to just hide and pretend I am not needed and that the world will just go along with out me.

I have lost so many chickens because of this fear to be away from the cloistered world of my house. But this morning it was finding Rose, my sweet Rose, with a broken neck. That was the last straw. And instead of making me want to get up and be a tigress and protect my beloved chickens, it makes me feel weak and vulnerable and like again I just want to crawl under the bed. But I will not. I will start to force myself to stand up. To get out of this place. To be nice and interact and allow me time with my beloved ones…..and to appreciate that time. After all I am so fortunate that I do not have to deal with as much as normal cancer patients have to deal with. I have always been gifted to be the golden child, the one that always has a happy outlook and a happy life filled with more blessings then any one person should have. And I appreciate all of the gifts and blessings I have been given.

Time to pull myself up and add medication to the list of reasons why I am hiding. And to look at all of the reasons and say, “so what?!?!!!!” and get back to living. I have cancer, not a death sentence. I have a life and opportunities and so many gifts. Get back up and appreciate them. Quit feeling sorry for yourself, and afraid of people. I think I can hurt them even more by hiding then by a few unpleasant words. I can apologize for a misspoken statement. As much as I don’t want to do that, but how do you apologize to your beloveds because you are afraid to be around them?

Back to life, back to work, back to myself. Enough already get up and get on with life. It is too precious to hide from.

And if you have not already gone over to Bless Our Hearts and watched disconnect, you really should. You will be so happy you have!!! And Ms Moon? She is amazing in this movie. She is such a talented actor, and you start to get that when you watch the movie. Oh! And I have my moment in the film. Yes, I do, I am the one towards the end when Mikey is going through the barn, and this can of paint hits the ground and rolls. That is me. Really, I dropped the can and made it roll. I am so proud. And honestly after watching Ms Moon act, I think I am quite happy to be in the back ground or the can roller. Just to be near her while she works and to be amazed at all the talent she has and how Freddie manages to show that off with such ease. Yep, get your popcorn out and watch Disconnect.

Oh, thank you for finally admitting that you are hiding, and to get up and back to life. And to all the people who love me and care for me. I owe you better, and I will be better. Really, I will.

Monday, September 20, 2010

The Carousel Ride

Up and down this journey goes, today was an up day.  Yesterday was my dear friend Bob's birthday.  I meant to call him, but after all the insanity of getting family packed up and on the road I fell into the quiet hush of peaceful land and didn't answer the phone, didn't call anyone, just laid back and rested.  And because I rested so well yesterday and went to bed early, I woke up with a swollen and red foot, but not too uncomfortable.  I took my naproxin, it has to help and got dressed, with my brace around on my left foot and off I went to work.  I parked in the loading zone and thought, it there is a problem, they will come get me.  Otherwise, if I have to walk from on top of the hill or all the way from the grass parking at the end, I might as well just go home.  So I hobbled up the stairs and to my office.  I kept my foot raised a bit off the floor, hey, better then nothing and I tried to combine as many trips as possible to stay off of it.  Then I realized at lunch that I had not gotten a cake for Bob yet.  So off to Publix, where shopping is a pleasure, and I bought him a mini chocolate fudge cake.  Big enough to share, small enough to take home and eat the whole thing yourself.  I also got him a gift certificate for an ice cream cone.  It was for his birthday after all.  

And I got several projects taken care of and then headed at home with work I can do sitting in a chair with my foot propped up with ice on it.  But on my way home I stopped at Ms Moon and interrupted her giving Owen his bottle and trying to get him to sleep for a little nap.  darn.  She was as sweet as ever and even made me the most beautiful tuna casserole you have ever seen.  Yep, I love tuna casserole, especially with peas.  It is comfort food and I am so looking forward to it for dinner and probably lunch and dinner tomorrow night, Ms Moon takes such good care of me.  

That is about all there is today, feeling good, thinking of friends on their birthdays, sitting at home with ice on my foot, just enjoying the ride.  I think my foot has "peaked" and is actually getting better.  I don't think it is as hot or swollen today as it was yesterday.  So good things all the way around.

Sunday, September 19, 2010

The Pain is gone

Quiet. My house is quiet for the first time in a week.  I loved the noise, and now I appreciate the quiet again.

My older brother, his wife Jong Ae and their daughter, Jessica came in last night.  It was late but we got to catch up and then this morning we had a nice big breakfast together.  Jessica my niece is absolutely adorable and sweet and cute as a June bug.  And full of energy and artistic talent and curiosity.  And I love spending time with her, but after this past week she flat wore me out within a few hours.  So they headed out late this morning to get Dad home.  It had been a good week having Dad here, he didn't wear me out, it was all the side effects added in on top of everything that was the straw that broke the camels back.  And I am tired.  But my foot does not hurt so much.

Really, I know the foot is uncomfortable, but I am already used to it.  Now walking, that is a little painful so I just try and stay off my foot.  RICE, Rest, ice, compress and elevate.  I always have the hardest time remembering the order of the words, but when I remember to follow it, my foot does feel better.  So, I am resting today and keeping my foot up and staying off of it as much as possible.  My brother Rob was great, he swept the kitchen and ran the vacuum for me, without me even asking!!!!  I mean how sweet is that.  Jong Ae helped with breakfast and then cleaned the kitchen and helped Rob with the vacuuming.  Jessica kept Grandpa and I entertained, she is really such a delightful child.  And then they left shortly afternoon to drive home.  A short visit, but so special and sweet.  Just like having Dad here.  It was such a pleasure.  He is a story teller, and he has remembered so many ordinary events that now feel special.  Some from the military, his days at Purdue, when he and my mother lived at the summer camp at Culver Military  Academy, his different careers.  Many of the stories I have heard so many times, and this week I enjoyed hearing them again.  He enjoys telling his story and I appreciate this past week to get to hear them.  But no matter how much you enjoy having company,  it is still tiring.  And I am tired.

And my foot is running its course, (get it, running, I just crack myself up, really I do).  When I wake up in the morning the swelling isn't so bad, but I have been resting it and I keep it up on pillows to elevate it.  But within an hour or two it is red and hot again, but the pain is not so bad.  So I can deal with anything again, and instead of feeling stuck because I can't walk, instead it sort of feels freeing because I can't get up and do anything, so why worry, no guilt.  And with my guests doing so much for me  before they left, I really don't have that much on my plate, other then getting enough rest to get to work tomorrow.  Well barring any new side effects or whatever.  And if something else new comes along, oh well.  What can you do?  Just roll with it, I guess.  

And Jan is in the hospital dealing with her own situation.  And I don't feel like I can go and see her, and it feels terrible that her she is going through something and I am not there.  I don't know what I can do, but I have to think of something.  I wonder if anyone has thought to take dinner to Jack?  Why haven't I?  Ok, I have been a little tied up with some self involvement here, and trying to get it through my head that I have to learn to give where I can, instead of feeling guilty for not doing everything.  But I could at least send her a card, or a book or some scripts, or maybe some lotions, you always get dry in the hospital.  I will think of something.

And I have to get birthday presents, Owen will be one!  And then Collin and then Waylon!  The boys are all turning one.  Big boys.  Time to buy presents.  I love to buy people presents, and such special little boys.  And don't forget Lily.  Her birthday is hidden amongst all the firsts.  But she is so special, that sweet, loving mother of little Owen.

So to have the ability to not live in the dark, or anger or fear or pain, but instead to just keep moving forward and remember the good, the sweet the fine, and to forget the pain and difficulties, that is the secret to surviving this journey and not loose yourself.  Well, that is how I am doing it for now, and the journey has given more then it has taken from me.

Saturday, September 18, 2010

Side Effects

 So this treatment has had some interesting side effects, challenges you might say.  By Thursday evening though the aching pain in my bones was subsiding and I was feeling much better, less nausea and I was able to start cutting back on some of the meds.  About 4:00 Dad and I were sitting in the living room talking when out of the blue I get this shooting pain starting in my hip or back, I am not sure but then it shot like a lightening bolt down my left leg and into my left foot and instantly my left ankle and foot swelled up to about twice its normal size.  What is this?   It was quite painful and my ankle was weak and didn't feel like it would be able to hold me up.  So I limped into my bed room and hunted up my old ankle brace.

About nine years ago Larry and I were getting ready to go on vacation to the Keys.  I was happy and having lived in Key West many many years ago I always love to go back.  I was an Agriculture Teacher for Special Needs students in a school called May Sands in Key West before moving into social work there.  I only lived there 2 years and this was in the late '70s.  So as we are getting ready to head down there for a week I am dancing down the stairs to take the laundry to the washer which was on the first floor and I misjudged the steps and fell breaking the tip of one of the bones in my ankle.  My ankle and foot swelled up  and turned blue and I had to crawl back up the stairs where I again passed out on the couch.  When Larry came home there I lay with my foot elevated swollen up as big as a grapefruit and lovely colors of blue, green, purple and red.  So the next day as we were leaving town I stopped by for an X-ray, just to be careful and then we headed down to the Keys.  I did some walking on it, but it was terribly painful and a few days later I got a call from the lady babysitting the dogs to tell me that the doctor and the X-ray office had been calling and leaving messages.  They needed to see me right away.  So I called Dr. Mauney and he asks, "Where are you?"  I hemmed and hawed and asked him what was the matter.  He wanted me to go in for more X-rays and then to get into his office right away to discuss my broken foot.  Ooops, I thought for sure all I had done was twist it, which I had done, but I didn't realize I had broken anything.  I messed up the foot so bad that I was in a walking rocker boot for 2 years and then a leather foot brace for 5 years. And at one point the podiatrist wanted to diagnosis my condition as Reflex sympathetic dystrophy (RSD).  I said no thank you, I don't want anything else right now and I stopped going to see the podiatrist.  Symptoms of RSD include redness, swelling, weakness and pain.  I guess you can refuse to accept a diagnosis, but that doesn't mean you don't really have it.  And every once in a while I have a little flare up, but as long as I wore the brace, very few flare ups.  But when I moved up here I stopped wearing the foot brace.  I just took it off one day.  I bought real shoes and for the most part it has worked out just fine.

So flash forward to Thursday.  There I sit in the chair, the shooting pain and then all the symptoms of RSD.  But I had forgotten about all of that.  My foot continued to be swollen Thursday night and I had to get Dad to help a lot more as my ankle got weaker and the pain from  walking on it got worse.  It was finally too swollen to wear with the foot brace, so I had to take it off, and by this time, there is no walking.  So I take a Naproxin for the swelling and go to bed.  About 2:00am I went to get out of bed to go into the bathroom and did not give my foot a second thought, stepped out of bed on that foot and went straight down and then the pain reminded me that something had happened to my foot.  So I crawled to the bathroom.  The foot was red and swollen and could take zero pressure on it.  So I crawled back to bed, elevated my foot and then tried to think what I was going to do.  I obviously needed pain meds, but they were in my purse in the living room, I had no way of getting there and the pain slowly intensified from 2 - 5:30 when I again crawled to the bathroom.  By now I am weeping with the pain.  And I don't know what to do.  So I crawled back to bed and as close to 8 as I could wait, I called Mary.  I told here I was in excruciating pain.  And I have to say, this is the first time in my life that I have ever been able to use that term, excruciating.  I would say I was at a level 9.  On my chart, 10 is vomiting until you pass out.  Nine is excruciating with vomiting.  I was a 9.  I called Mary asked her if she could get me crutches, and yes, I needed her.  Could she come over?  Ms Moon voice trembled with the pain I felt.  She said of course and we hung up.  Then I heard Dad at the other end of the house, so I called to him as loudly as I had it in me.  He heard.  Dad has severe arthritis in his back and getting around is hard, but he came as fast as he could.  I told him where my purse was and asked him to bring it to me so I could get my pain meds.  I showed him my foot and explained what had been happening and that Ms Moon would be coming soon.  He got me my meds and I took them.  Would they work?  How long, how much longer could I take this pain.  I can handle the pain as long as I know there is going to be an ending.  I don't know what is going on with my foot, but I am sure that it isn't going to last forever, so I try to be less dramatic and stay calm.  

Ms Moon walked in with new crutches from CVS.  Isn't that amazing that they have crutches at CVS?   You can just walk in and get them.  Well, I guess if you need them, you might be having problems with walking in.  Anyway, now I could get out of bed.  I had already called Judy and the doctors.  I left an urgent message.  Normally when I call I say, "this is not urgent"  This time I called I said, "this is an urgent message."  And it was.  The nurse called back as Mary was there and helping me to get dressed to just drive to the doctors.  She said she would look and see when I could come in that day.  About that time, Bob my lab jumped up on the bed and kicked my foot a couple of times and I screamed and howled into the phone until I realized what I was doing and I threw the phone to Mary, grabbed my foot and rocked back and forth sobbing.  The nurse told Mary to bring me in now.  I guess I should thank Bob, maybe later.

So Ms Moon drove us to the doctors and I managed to get out of the car and into the office.  We sat next to a lovely woman who had lymphoma and then later they found lung cancer.  They can slow the lung cancer down, and it could go into remission, but they can not make it go away or necessarily even make it go into remission.  But she is an amazing woman with a positive attitude and looking forward to life and enjoying her grandchildren.  What a lovely woman.  So they call us back to see the doctor and the nurse walks up to the scale and directs me to get on it.  I can not put any weight at all on my left foot the ankle is still quite noticeably swollen.  The pain meds have kicked in and I am no longer in excruciating pain, but I am still no where close to walking, let alone hopping up on a scale.  So I looked at the small part to stand on, and I look at the nurse and I look at my crutches and I ask her how she wants me to get on the scale?  She gives me an exasperated look asks me if I weighed myself this morning and I must have looked at her like she was crazy, because she just said never mind and led us to the back room.  When the doc finally made it in, I gave him a brief history of the ankle and let him do his doctor thing which is of course to push on anything that looks like it hurts and say, "does it hurt here?"  I mean is this a class at med school or something?  And then after a few more questions he rolls back and says, "this is not from the chemo, I don't know what it is."  And that was that.  So Mary asked him if it was possible that there was a stress fracture, he looks down his nose at her and says that anything is possible.  So Mary snaps right back, well I don't think an elephant came in and sat on it.  He then wrote out a prescription to have it X-rayed and a note for him to be called ASAP.  Bottom line, no new fracture.  They could see the old one, but nothing new.  So I guess it is just RSD.  

And now it is Saturday, the foot is still swollen and my toes look like fat little pink pigs stuck on the end of a balloon half blown up.  My foot is red and hot but as long as I can get my brace on, I can walk, with difficulty, but I can at least get around.  Of course I have already been on my feet too much today and I am guessing that is why it is so swollen.  So I will keep my feet up as much as I can for the rest of the day and put ice on the foot.   

Dad and I have finished all but one person on his gift list, and he might be able to finish that one up tomorrow.  I ordered a few things on line for him, and did the best I could to get him all finished up.  I will have to order a few things tomorrow that I marked on my list and that will be the beginning of my Christmas shopping.  

Mr Moon brought Dad and I a wonderful dinner from the Rare Door last night.  Mr Moon is as sweet as his dear lovely wife.  Really.  This evening I will finally make some raviolis with sauce, a nice salad and some garlic bread for our dinner while we watch "Braveheart".  Dad had said he would like to see it, so I put in a request with Netflix, and it showed up in the mail this morning.  Perfect timing.  And then tonight my brother and his wife will drive in with their daughter and tomorrow we will all have breakfast and then they will head back home.  And Dad and I watched "Disconnect"  the new FC Rabbath film.  Ms Moon and her youngest, Mean Aunt Jessie are in it along with a lot of other talented actors.  It is a 30 minute film and a lot of fun to watch.  Ms Moon has a link to it on her blog and I think you would really enjoy hopping over to her site to see the movie.  Ms Moon is amazing in it. Yes, I am prejudiced, but even my dad was commenting on how talented she is, so there.

The foot is running its course, bad timing, but what are you going to do?!  I will keep it up, enjoy my last night with this visit with Dad and hopefully tomorrow it will continue to keep getting better.  Got to keep positive, just challenges that I have to work through, and really, nothing that bad.

Wednesday, September 15, 2010

Another Day

I have made it to Wednesday.  Went to work this morning, even though I was too sick last night for dinner.  Just another challenge.  My mind was working much better this morning and I was able to complete some reciprocal licenses that have been stumping my brain for 10 days now.  It feels good to clear that project off my desk.  I was also able to submit my EPA Plan, which is just the same as last year, so really a no brainer, but it has taken me all month so far to figure that out.  So check, check.  I wish I felt stronger.  My legs are still weak feeling and my arms feel numb from my elbows down to my hands.  I lurch around the office for the first couple of hours but then after that I seem to do just fine.  Yes, I will call the doctor to see if there is any thing that I can do about this.  They mention these symptoms as common side effects for this chemo, so I don't want to complain too quickly.

Other then that, nothing new to speak of.  I did get to talk to Vivian today and she sent me 2 lovely pictures of her beautiful twin daughters.  They are such joys.  And it was a day of joy.  My friend Michelle at work came over and spent some time chatting.  I notice people talk to me a lot more now that I am wearing a bandanna instead of letting my bald head hang out there.  She is another one of those sweet ladies that helps to keep you up when things might be a bit challenging.  And then Jessica, a very nice lady who is pregnant with her second child right now and she is just beautiful, aren't pregnant woman just beautiful?!!  Anyway she came up and said that things just don't seem right when I am not at the office, they are always happy to see when I am able to come in.  I think it is hard for people to accept someone who is as healthy and strong and who ate healthy and moderate exercise, could get the little "c".  I think it is reassuring when I come in.  Like Michelle said to me, if you can get it, any of us can.  I had never thought of that when I told people about my own little "c".  I guess it is like when someone your age dies, it is a reminder of your mortality.  Cancer must be similar.  I think just about everyone knows at least one person with cancer.  After all as I have said before, half of all men will develop cancer and one third of all woman, and we still harbor so many fears about this disease.  And yes, if I can get it, anyone can, and for those who don't have it, it is pretty scary.  But it doesn't have to be that bad, really, don't worry, it is not like most cancers you can eat or drink something and not get it, trust me on this.  I know that some behaviors can cause the "C" but there was nothing that I could have done to have prevented what I have.  And they would not have found it any sooner if I was better going to the doctor.  Sometimes everything just works out the way it is going to work out.  I understand the science of what I have and why I have it, but the bottom line, is everything followed every other event and here I am, I have the little "c", and I am thankful for the gift.  An unexpected gift, that has brought me closer to so many beloved ones in my life.  That has shown the soft underbelly of humans, and you know what, it is good and sweet and kind down here.  

Tomorrow hopefully I will be stronger, and another day, another day.

Tuesday, September 14, 2010

Christmas shopping

I felt better this morning and managed to get out the door and on my way to work.  So that was a good thing, and even though I didn't get nearly enough done, just being there helps in so many ways and I can tell it is a relief when my staff sees me.  And that feels good.  I hate how much they have each taken on with me out so much, and we are on the verge of so many great things that are on hold now.  But I am doing the best I can, and they each know it, and they are a wonderful team, each member helping out the next, working for the Section then just their assigned tasks.  They are just the greatest.  

I managed to make it until 12:30 with a last minute flurry of activity coming in that kept me from leaving at noon.  I drove home and decided to surprise dad with lunch that had meat in it.  I don't eat much meat, and no beef or pork at all.  The last beef I ate was 1976, and that is when a doctor suggested that I stop eating meat for 2 weeks, and within that time all of my stomach problems cleared up completely, so no meat.  But Dad is a meat, potato and green veggie guy.  Even now at 85 he has a salad almost everyday, and for dinner he will have a meat, a starch and a green veggie.  He relies more and more on the Hungry Man frozen dinners, but he still does a lot of cooking for himself and is basically a very healthy eater.  Maybe a little heavy on the meat for a Mediterranean diet, but still lots of variety and fruits and veggies.  But he does love a "good" hamburger so I thought I would get him one from McD's.  Yes I know it is obvious that I don't eat meat.  But he likes their quarter pounder and really doesn't eat fast food.  So I pull in to order his burger and fries and a strawberry shake and no shakes.  So I pull across the street to Arby's, yes they have strawberry shakes, and he likes Ruben's, so set.  No, the strawberry shake is now strawberry and BANANA shake.  My Dad does not like banana's in anything, just Alacarte.  But I was able to score a vanilla shake, and when I got home he looked pretty happy.  Not only meat, but his weird veggie daughter got it for him, and who doesn't smile when they get a milk shake?  So we had a nice lunch and I was actually ready to lay down.  But know, out come the Christmas catalogs.

You see my dad, and my Mother when she was alive here, loved Christmas, and they were good at it.  With very little money they made sure each year to give us something that would be very special, and I have to say my life is filled with these sweet happy memories.  And Dad buys Christmas presents for people all over the world.  Seriously, Spain and the Netherlands.  His friend in Scotland passed on, so just the two countries now.  But he searches for something small and not expensive, just a token to let each person knows that he is thinking of them.  And I also send gifts to many of these same people.  Again, just a small token to say, "I remember you and you are special to me."  Well Dad takes many many hours pouring over hundreds of catalogs.  The mailman is constantly commenting that he delivers about 6 catalogs or magazines to Dad's house every day.  Yes, everyday.  He pours over each catalog turning down pages.  And today he brought them out.  He had already shown them to me when he first got here, but it was a quick run through.  Today he had made a list with everyone on it, grouped by family.  And after lunch I pulled a chair up to his and off we ran.  Coordinating what we each send so that we build on the theme.  This year the theme was monograms.  We fired down the list starting with the 4 ladies in the Netherlands, then hit the 2 families in Spain, and finally working on the non-biological family in this country.  Then balancing the budget and cost of each family Dad settled on a present for the men and we completed one and a half pages within 2 hours.  That leaves mostly family presents which are a little tougher for tonight or tomorrow.  I picked out a lovely cobalt blue ceramic compost pail, with a charcoal filter lid!  I never know for sure what he will end up getting for everyone.  The prices are so inexpensive that they sell out pretty quick, then you have to order the same thing from another catalog, which I am sure that the same company owns both, and pay way more, or try and find something else.  Plus he will continue to look in catalogs and find things that he may like better.  He started catalog shopping a few years back when he started having so much trouble walking and getting around from his arthritis in his back.  So he still gets to buy his presents, but now from the comfort of his lazy boy.  He does need some help though, and the timing of this trip worked out great, hopefully he can call early enough now that he will get most of what he orders.  

And now he is napping and I am going to lay down.  It has been a very productive day.  I still have the same discomfort, but I have grown pretty used to it by now.  And when Mary reminded me that I have the pain meds, use them, that helped a lot.  I guess I don't care that I hurt as much as I did, and that is a good thing.

Monday, September 13, 2010

Monday morning

This morning my alarm went off but I was already awake laying there.  My legs were bothering me. But I thought maybe not so much, then I realized I have started getting used to the feelings.  Ok, whatever it takes to get me up and out the door.  But it was not enough.  After my shower I had to lay down and rest, then I got up and fed the dogs and then laid back down to rest again.  I had been watching the clock since a about 3:00am.  That kind of time where I might very well be a sleep, but so lightly that I am constantly opening my eyes and look at the clock.  Some times it was like every 15 minutes, other times maybe close to an hour had slipped by, but I did not feel rested and the more I tried to push through it, the more uncomfortable my legs and arms became.  Again, a distracting kind of discomfort and by 8:00am I had given up on forcing myself to the office.  I did that last Friday and made myself sicker, so trying to be a little smarter here, but I am not sure exactly what to do.

So Dad and I are going to venture up to the Winn Dixie to pick up the last few needed items.  We will take his wheel chair and the plans at this moment are that I will be pushing him around the store.  He assured me though if I get wimpy he will trade places with me.  Isn't that sweet.  I hope it just remains an offer.

That is it for now.  Nothing exciting to say.  I am still pushing the envelope eating.  I pureed up the chicken and dumplings I made for Dad last night.  I used the last of the three roosters, I think this was Sue based on his size.  And almost as dark and strong meat on those legs as a turkey.  But it made some fine chicken and dumplings, which pureed up quiet nicely for me.  Tonight?  I am thinking of a chicken noodle stroganoff kind of thing.  Then maybe Italian tomorrow night.  I am enjoying the cooking, wish I enjoyed the eating as much.

Sorry, just seems to be a challenging couple of days, and trying to learn to cope with this situation and get back as much of my real life as possible right now.  Nice to have dad here.

And hopefully tomorrow I will be strong enough to maybe go to the office for a couple of hours.  That would be a very good thing.

Sunday, September 12, 2010

Wednesday was chemo, Thursday I stayed home in the morning and then went to the American Cancer Institute and a visit with the amazing Dr. Newman.  The American Cancer Institute had wigs but I tried one on, and gave up.  They gave me some brochures on feeling pretty while I undergo chemo and a schedule for upcoming group events.  I don't fit in well with this type of organization I guess.

But I had a nice visit with Dr. N.  She is such an amazing person and uses real life stories sometimes to explain a situation.  And she gave me some magic cream to put on my radiation burns.  I have no idea where the magic cream has disappeared.  Darn, I really wanted to use the magic cream.  Hopefully I will come across it soon, probably just stumble upon it in an odd place, but then I will be able to use the magic cream.  

Friday I decided that I could go to work so I drove in, and realized shortly that this had been a terrible mistake.  But I managed to make it through an impromptu meeting with some of my staff and others involved with the spiffy things up project.  I see nothing wrong, especially since we are doing this with no additional funds, and we are looking at our work environment with new eyes, and it is good, just the timetables don't seem to match the projects as well.  But I got sick twice so managed to get home and into bed.  I still had things I needed to do to get ready for my Dad, but it was out of my control.  Friday was spent sleeping.  

Saturday I woke up, still feeling a little puny, but more then anything it is the joint and bone and muscle aches.  It starts in my knees and then radiates up and down my legs into the hip joints, the hands numbing and then my arms ache.  It feels like I can not hold up my own weight, but I am standing just fine.  I keep trying to tell myself that it means something is working.  I managed to get some house work done, but it was quite difficult and most activities had to be planned around the sitting position, but  I got everything done except the mopping, sweeping and vacuuming.  So I called my neighbor and asked for help and she was right there and did most of that, and then just smiled and said think of what you do for me, and think this is just closer to being even.  I really appreciated not only the help with the house, but what a sweet thing to say.   I don't think of things I have done for other people as I think about the things that made me happy that involved other people.

Bob picked me up that afternoon to drive me to get Dad, and I am so grateful for that.  I might have made it there with just a little discomfort, but I doubt that I could have gotten us home.  I needed to take some over the counter meds, but didn't think I had it with me.  I looked in my purse a couple of times and never saw the bottle, so that meant that I went too many hours without any pain meds and I was distracted with discomfort.  I hate to say pain, in that it is those flu like achy joints and muscles, but it does become quite debilitating with the pain after a while.  So far, even with ibuprofen every 4-5 hours it has not helped so much.  I hope that it is gone by tomorrow.  

Bob got Dad and I safely delivered here and I took the easy way out with sweet and sour pork for Dad from the Chinese takeout.  I tried the egg foo young, and was able to eat it.  It is a little harder to eat then scrambled eggs, but still easier to swallow then a lot of foods.  Dad and I are enjoying our time, except for my distraction with the joint and bone issues.  He seems comfortable that I sit around without a hat or wig, and he sees me in pain, but he also sees me doing my best to try and keep a positive attitude.  We have managed to look at some Christmas catalogs and discuss presents for over seas, as well as our up coming trip to Spain and Holland, which we both have agreed that the earliest I will be able to go will be spring.  We also talked about going to Holland first and then to our couple of stops in Spain after that.  I suggested this because our friends in Holland make this wonderful cheese.  Really delicious and creamy and molded, not cut into hearts and rounds and tulips.  And I suggested that presents we could take to the families that we will be able to see could be based around the cheese.  That would save us from having to buy gifts here and then carry them over there.  Pick up the cheese, a few baskets, which we might even be able to get through Karin at the farm right there, some crackers, a cheese cutter and you have a lovely present from people we know!  And if you like cheese, you would love this cheese.  So we managed to talk about a lot of things that we have needed to discuss.  That is all good.

So tomorrow, hmmmm

But in the meantime I am glad to have Dad here.  Yes, it might mean a little more work, but I had gotten into the habit of only thinking of food as something that I had to manage to swallow to maintain any strength, no wonder I am having joint issues, bad nutrition this past many weeks.  But with Dad here it is getting me to think of food as a meal as something that is healthy and natural, not a torture device.  I have managed to eat some, and I am hoping to start expanding out my options still further.  

Thursday, September 9, 2010

blogging at night

I blog in my sleep, and right before I sleep.  And they are wonderful blogs. Beautiful words, expressive, recording my journey.  And then when i wake up and go to blog, gone.  I have already worked out the thoughts and ideas so no longer have a need to blog them.  I wish I had them written down, some of them had lessons I want to remember and learn, but instead they are gone into the ethereal of my dreams.  I suppose you who blogged for a while already know this.  It is new to me, and I am thankful to have the words and expressions to release these thoughts and pressures off my chests and move one.  There is so much to do and keep moving forward, even though sometimes I do my best blogging in my sleep.  Multi tasking, does this count?

But I said I wanted to be a better person

Yesterday morning Judy picked me up around 7:30 and then over to Mary's and then to the hospital for my second treatment.  Judy had not slept well finishing up her grant and then fighting a little under the weather, problably from all the stress of writing the grants these many many weeks, so bless her heart she looked rough and still had to print and overnight the grant.  Mary had not slept well either.  I had actually slept ok and was fired up and ready to face another treatment.  This one with more knowldge then the first one, and hopefully with a more positive attitude.  I was perky and moving with energy.  I was ready to face the day head on, no matter the obstacle.

First stop was at the doctor's where they took blood, took my weight and then gently admonished me for my weight loss.  That was ok, I have not been able to eat well with my throat so I had thought that maybe my weight was low, but had stablized.  No, they told me I had lost 8 pounds.  First, these numbers they come up are so unrealistic.  Secondly my system is working better and moving things through a little better then when they weighed me last tme, so that weight was a false reading in the first case, and it was taken before my throat problem and I was trying to increase my calories and weight at the time, plus I had hair.  So I just smiled and agreed with them that I promised as soon as I could eat again I would try and be a better patient.  they smiled.  Then we met with Dr.  B and this is when Ms Moon had to sweetly remind me that I never remember the negative.  That I had gotten nauseas after the last chemo and had been sick the enitre day before to boot.  She was right on both accounts, I do have horrible linear thinking and I do forget about the bad as qickly as possible.  But all in all I was doing well, the blood work looked fine and off to the hospital we went.  But not before speaking a few words of encouragement to a loving woman named Minnie, but prefers to be called Cookie who was sitting there.  She does not have cancer but a blood disease and I hope they can fix it, she seemed like such a lovely person.

I did not understand about the paperwork so showed up with the wrong pages.  The nurse filling in the job was a bit flustered at first, but as soon as she saw that I was calm, she called the doctor and got everything fixed.  She is a very nice person.  All in all the nurses this time were much calmer and all so very very nice.  So the chemo was finally started and I was not affected this time as much by the Benadryl or the other meds.  I started to feel the slightest twinge of nausea at one point and looked up at the IVs and realized I was still in the premeds which are anit-nausea and I laughed at myself.  Mary brought me soup from the cafeteria and I was able to eat it.  Then I was even awake for tea time and had a lovely spot of tea, but no cookies, because they looked like they would be hard to swallow.  

And when we first got there an started the treatment there was a lovely ederly man with a voice like a song.  I said so and asked where he was born.  He said St. Thomas and smiled, talked about his "wife's" children in a joke when I asked how many he had.  I can tell he says that a lot and I bet his wife is as sick of hearing it as my mother became of my father's favorite jokes, but it tickled him and made us all smile.  he was such a sweet man and when he left our big hearted exhausted Judy walked with him down to the entrance so his son could pick him up.  Such lovely people we have met on this journey so far.

And through the day I learned more and more of my bad behavior from the last treatment, week 2 exactly after the last treatment.  I was rude and threw temper tantrums and was ugly and just all around unpleasant.  I remember some crazy behavior and I remember at times stopping myself and thinking why am I acting like such an ass?  And then I would try and be better.  And as I heard more and more of my behavior I felt horrible.  But what was I going to do now?  I was being told in the sweetest way possible, but it still broke my heart that my friends had to live with it.  I am not saying that what I said wasn't true.  Oh, yes babies it was true.  But I don't normally feel required to tell everyone the whole truth if it is hurtful.  I am a Southern lady,  we hold those types of things in or let them usually wash off our back or put them in our gossip purse so when we are cloistered on a porch with a glass of lemonade or a cup of tea we can bring up the behavior and tut tut over it.  i don't normally send emails that are unpleasent.  But I am still affected by those behaviors, which is why I refuse to say that I was wrong.  Handled it not in the best way, oh, I will agree to that, but the observations were correct, and some of the behaviors are actually changed, for now.  

But the only goal I had set for myself was to be a better person, and I have not done so well on that.  Today is a new day, the day after treatment two and I have had the blinders lifted, and you can bet that I will work harder and harder each treatment to be as close to that goal of learning to be a better person as I can.

After all this bad behavior of mine was directed at my most beloveds.  I guess because they were closer and were trying so hard to help me.  And last night I stayed at Ms Moon's so she could take care of me, and Judy fed the animals and settled them in for the night.  I ate delicous squash soup and cooked apples/blueberries and drank a little glass of chocolate milk.  and enjoyed every bite.  She is an angel, our Ms Moon.  I am just telling you something you already know, but she is.  She took phone calls from worried friends and over all took all the pressure off me last night.  

And now I need to get up and going, take the trash to the dump, clean David Smith's cage and let her out to run a little bit, I do hope I can catch her again.  And get the house a little straightened up before Dad gets her on Saturday.  And enjoy how well I feel this day after chemo.  I do feel good and again so thankful for all my blessings and this journey.    Oh and my friends!


In second grade I met Jennifer Oakley.  Her family moved to Palmetto that year and we met and became fast friends.  All through elementary school into college Jennifer and i were very close friends.  She lived closer to me in elementary school then Vicki did, so I spent more time after school at Jennifer's.  And since she was an only child until she was 13 I went on several vacations with her and her family.  Jennifer is a special person with a wonderful smile and a laugh all her own.  She married Rodney, a man she met in college and loves so very much.  They had wonderful tall blond boys and adopted a beautiful little girl.  And I am sure that the children all grew up healthy and happy with Rodney and Jennifer as their parents.  Jennifer works in the school system, and i am not sure, but I think she is one of the people I graduated with who went back for the PhD, so she might be a doctor of education.  I really can't remember, but I am proud of her and what she has done raising a family and a career.  

Jennifer's dad passed away on Monday.  I know that she is suffering way more then I am now.  I am  in the getting better phase. Jennifer is just starting her moment of grief for her beloved father and worrying about her mother.  Jennifer's mom is strong and has handled many things in her life, but the loss of a life time partner has to be one of the hardest things we have to deal with.  And I know that Jennifer must miss her dad with all her heart right now.  How he used to always say as you were leaving, "I am so glad that you got to see me today."  or "It is hard to be humble when you are this good."  he was very funny and loved Jennifer and his other children completely.  

I hope that those of you that know Jennifer will pass this news around to the rest of our class friends, being this far away and just having had my second chemo treatment, even though so far so good.  I can not go to see her or attend the funeral.  But my thoughts are with her and dad was sending a potted plant with a card on it for us.  I called, but this is not a time about me, but about her family, so I was just able to tell her how much I loved her and we will talk again next week.

Dear Jennifer, all my love is sent to you and what you and your family will be dealing with now.  I know you have very strong faith and beliefs, but i also know you will miss him so much that it will feel like you are breaking in two right now.  Time will help, but i still miss my mother 9 years now after her passing.  I would take this pain right now if I could from her.  But it is her pain and she must choose how to handle it.  Bless her hearts and her families.

Tuesday, September 7, 2010

The last day

So tomorrow is chemo.  Today is the last day before my next chemo treatment and I felt great.  I went to work and wore some comfortable clothes and a baseball hat.  But the hats are not made for someone with out hair.  They are a little rough inside and to get it small enough to stay on my teeny tiny head then it is a little tight..  And it is hot, and I am not used to wearing hats on my bald head, so when I am driving or sitting at my desk, no hat.  And then I walked out of my office to go down to see Bob and I was about half way there when I realized everyone was averting their eyes away from me.  I had forgotten to put my hat back on.  Well, too bad too sad, I had escaped and i was not going to run back and get my hat.  Of course my friends don't avert their eyes.  It did take them a few minutes to get used to me and my little bald head, but within a few minutes, each of my friends was acting like I was being perfectly normal.  And for me, I am.  I thought I would be much more vain then this, but I am not.  I mean I can't even see my hair, so what difference does it make to me?!?!?  

And then my friend Susie crocheted me a hat.  It is soft and will be very warm this winter, but right now it is way too hot for anything like that.  Right now, I am quite happy not wearing anything on my head.  I am getting used to this bald woman.  I am not saying that I will be comfortable in all situations, but just normal life right now, i am very comfortable being bald.  

And I got to talk to Susan, my friend from CT.  She is an amazing woman who is a tenured professor at the University of Hartford.  I am very proud of her.  And she has 2 of the greatest kids you could ever want to meet.  Annie is a dancer and a Sr at college.  Jim is an artist and in high school.  I love these kids.  They always send thank you letters, and usually I think the minute after they have opened a present.  it is a joy to do for them and be with them, because of this kind of politeness and joy.  OK, I wish my biological nieces and nephews new what thank you notes are. But their parents didn't teach them I guess.  That is one of the biggest causes of miscommunication and problems in my family.  No thank you notes.  And I am bad about sending them out also.  I am pretty good about calling or emailing, but not really great at thank yous.  But at least people know I received the gift and appreciate it, where when we have sent things to great niece/nephew  No one ever hears from their parents so you don't know if they got it.  It is not about thanking someone.  it is about simply acknowledging that someone loves you enough to think of you.  Annie and Jim are great about that.  And every time I am around them they act like they want to be with me.  A hug like a thank you note.  And they are just great kids.  And that is mostly what Susan and I talked about.  What great kids and adults they are becoming.  Very special.  And always wonderful to talk to Susan, we laugh a lot!

So not much else is new, life is good at this moment, and tomorrow Judy will pick me up to go to Mary's and then on to chemo.  It is hard to believe that this is only number 2 treatment.  

Sunday, September 5, 2010

Quiet Sunday

It has been a lovely Sunday.  I love Sundays, I have always thought of them as my day.  I have my little morning routine.  I fix us all breakfast and then finish doing the laundry that I didn't get done on Saturday so I can fold the clothes while I watch the morning news.  I used to get up early so that I could sit down at 7 to start watching my favorite garden shows.  But this summer they have not been on.  I hope they come back in September. 

After the morning news I watch Charles Osgood and Sunday morning.  Then at 10:30 I like to garden, but I will start that again when I am able to stay better hydrated.  So this morning I drove up to Thomasville to the Lowe's to see if I could fix my stove.  I bought some new burners and the pans under them, and all fixed.  I also bought a new microwave.  Big day.  

I spent the afternoon quietly finishing reading the Kris Radish book.  I enjoyed it.  Kris gets a little preachy maybe, but it is hard to argue with her.  I really enjoy her style of writing, you might want to check her out at the library.  And this one, The Sunday List of Dreams.  

It was a lovely Sunday.  I felt good, I am trying to just take it by the moment and enjoy my times that I feel well and have the time to do whatever I want.  And tomorrow is one of those glorious Monday holidays.  I hate that they shifted holidays to Mondays, because I loved it as a kid learning the dates of all the holidays, President birthdays, national holidays about wars mostly, and religious days.  So different then now.  But I really understand the concept of three day holidays.  And tomorrow maybe I will go to Joann's sale and buy more ribbon, or maybe I will just stay close to home and the kids.   It is just nice to have a quiet normal day and weekend.

Saturday, September 4, 2010


I didn't sleep well last night, neither did Maggie.  I gave her an aspirin tonight, I hope that helps her poor arthritic self sleep better.  About 4:00 a.m. I sort of gave up on sleeping and just lay in bed with Henry at my feet and Bob with his head on my chest gently snoring.  I just let my mind wander around.

I had just started reading the Kris Radish book, she describes how the main character turns her cell phone off for the first time since she bought it.  She is a Mother after all, and a nurse, someone might need her.  Isn't that what we all say about our phones, computers and other devices that keep us connected 24 hours a day?  We all have a child or parent, a sibling maybe, a neighbor, a job.  Someone "who might need me".  And isn't it funny that I would guess that most people would give that as one of the top three reasons they have their devices, "someone might need me".  And isn't that an important feeling, to be needed.  Kim and I talked about how older people live longer and happier if they are needed for something.  My dad says that he is still around because he makes people smile with his stories.  But honestly, we hope not to get that call.  We want to be needed more then necessarily having to deal with the needed situation. And that is not bad.  That is the world we live in now, separated watching movies from home, emailing friends instead of spending time with them.  And honestly we do not want an emergency phone call from a beloved one.  But we want them to know that the device is on, "if they need me."

But you know the weird thing I thought of, was that right now I could turn off my cell phone.  Because instead of being the one that might be needed, for one of the first times in my life I am the one that needs.  And it is a scary amazing feeling.  To know that many loving generous souls that are willing to help, to buy me bananas or ice cream or a watermelon.  That someone would make mashed potatoes and make extra ones so that I will have something to eat.  That if I ask someone right now to drive me to G'ville next weekend to get my Dad, they would do it.  What an over whelming feeling to be surrounded by such beloved people.  And as much as I love to be needed, I have to say, giving in and trying to let someone be needed by me, is pretty wonderful.  And I will stop it right there, I will not let the guilt that I take advantage of someone slip in and ruin this time.  Shed the guilt, OK, be aware that you need to shed the guilt, and try to be open and accept the position of the one that needs and let people give.  A big lesson to learn, but one that I think might be one of the most important lessons, accept and respect and love others more for what they have to offer instead of worrying that you do not have enough to give.  

Accept and respect and love others more for what they have to offer, of their gifts, their love, their friendship.  I am grateful for this gift most of all.