"Life can only be understood backwards;
but it must be lived forwards."
...SOREN KIERKEGAARD
I received a book in the mail,(Healing Words for the Body, Mind and Spirit by Caren Goldman)) from a sister friend of mine, and I opened it this morning randomly...This quote was at the top of the page about perspective....As I read the few pages written here I was stuck by the wisdom within the pages...We each have a different perspective of every given situation....we each carry our own thoughts on it...and everyone of us has the right to have those thoughts ... those feelings. I have been aware lately that some people feel sorry that "poor Pattie" has to go through all this...that "poor Pattie" somehow has a life "less" then. I have to say that when this first started for me, I did not have time to think about "poor Pattie"...there was to much to do...to many emotions running ramped...as things settled down I did go through a bit of "poor Pattie"... the life that I was leading up to this moment was more of my own...I was able to come and go more as I pleased...attending retreats knowing that Michael was perfectly capable of taking care of his every need...knowing that when I got home the sheets would be changed and the bathroom would be clean and the litter box was empty!! (this was a MUST for me when ever I was away!!) Now, as I settle into the routine of Doctor appointments and VA appointments my perspective has changed...The lesson I am learning is one of PATIENCE...a lesson that I have been hard pressed to learn over my 57 years!! My perspective of life here has changed along with this disease...I am finding strength where there use to be none...I am hearing words that use to go unspoken...I am opening up to things that use to be closed...I have more compassion for others than I use to...I am starting to regain parts of my life that are important to my survival now...I am letting myself do that...I am giving myself permission to NOT give up some of the ways of life that I so enjoyed before this prognosis...Does this mean that I care less? NO....this means that I am from my perspective...living life...and that is what I am suppose to be doing....When someone is ill ...You cannot take that illness away...you can not absorb it...you cannot make it yours...for to do so, brings about an illness for you too...it brings about a "poor me" attitude...it brings about a resentment....Today, these pages and quotes spoke to me...and made me aware that LIFE IS WORTH LIVING...no matter what! And that you have to continue to live till your last day..
Thank You...
Just when I think that I am in the middle of not knowing what the heck I am doing...what is going on...if I am doing the right thing...If my thoughts are stable...heck...if I am stable!! I get the most amazing support from ALL of you!! I get wonderful and heart felt messages that cheer me on...that hold me up...that give me strength....I get books in the mail from people (sisters) I have never met and yet who know my heart so well....I am grateful....I am thankful...I continue on one step at a time with the confidence that if I should fall....you will all be there to lift me and help me carry on.
My heart is full!! Thank you just does not seem like enough to say...but know it is from the center of my heart...
My heart is full!! Thank you just does not seem like enough to say...but know it is from the center of my heart...
Will it help???
We have just returned from the eye specialist....They did so many imaging tests...one that ran dye through his arm and up behind the eye that shows the damage done to the eyes...one that was done with measurements...all so confusing....We were there for 3.5 hours!! Bottom line comes down to this.....He is almost completely blind in his left eye and the right eye has damage that will soon follow the direction of the left eye....They will do a laser treatment on his right eye next week to try to repair the damage as this is the eye that has the least amount of damage and laser treatment should be able to help and repair this....the left eye is much more complicated....He said it was a rare day that he got to see this sort of damage....and so far along (in such a short period of time) They want to do surgery on the eye and remove the lining that is causing the problem...they say that he may be able to get 50% of his eyesight back in this eye after surgery....but we are looking at months and months before that would even be noticeable...His cancer Doctor does not want this surgery done till after his chemo treatment is finished which this round will be done on Feb. 13...so they scheduled eye surgery for the 19th ...and yet another stone is turned over in this way of life...I can't imagine not being able to see to do my work that I love so much...to not be able to read a book...or watch tv....So at this point of the game....50% more vision is better than continuing to lose all your vision....Will the protein continue to destroy his retina even after surgery...well, no one can answer that question....it is a "WAIT AND SEE" ....but for now...Michael is willing to give this a try....I am amazed at the strength that he possess...It makes you question what you would be doing at this point yourself...giving up...giving in...or FIGHTING for life!!! I for one...will continue to help him FIGHT for a normal way of living....as least as normal as one can get right now...
Another day of blood work down....
Blood work was done again today....and for the 3rd week running we do not have to do the blood washing!!! YIPPEE!! The protein level although high for a normal person came down .02...So again a good sign that the chemo may be doing the trick this time around...now it has to hold its own!! We have one more chemo treatment to go...which will be Feb. 13th....In the meantime of course the chemo has done its job by messing with his other blood counts...white cells and red cells...but he was given a booster shot to help his body make more of these...It is so confusing at times...but we are taking it in stride...one day....one blood test at a time!! So we have OFF this week from the hematology clinic!! Tomorrow is the eye specialist where more imaging will be done to see if there is anything that can be done to restore his eye sight...(that is besides buying a big screen TV!!) Helps to keep a sense of humor about all of this!! So today, I get to play some more in my studio...finish up a custom project and do more with my journaling and start a project for a submission to a magazine...I have been trying to keep up with MY normal creative self!! Seems this past week I have been sleeping more....not sure what that is all about...but my average of getting 4 to 5 hours has increased to 7 or more!! Perhaps I am turning into a bear and this is my hibernation time!! LOL.....All in all....it is a good day!!
Sunday...
The side effects of this round of chemo was not as bad...perhaps ones body gets accustomed to this poison....I have been lost in thoughts lately...a bit of a "funk" ...not really sure where it came from or how it was brought about....Part of me is feeling a little cabin fever...part of me is feeling sad...part of me is feeling lonely in some ways...and part of me is feeling good that this round is over...part of me is feeling creative...and yet part of me just wants to take a nap... I wonder sometimes how all this can be happening....I wonder what the outcome will be...and yet, I don't want to know the outcome yet...My mind plays tricks with me...laughing one moment...crying the next....Emotions....always good to have but sometimes hard to bare. I am rambling here...late on Sunday evening....tomorrow starts another week...
Just when I think...
Just when I think I am getting a handle on this disease....Just when I think I am coming to some understanding about the treatment and the blood counts....Just when I think that I somehow am better equipped to answer questions for myself...for Michael...for others.....I get put on another path and I have NO IDEA what is going on!! Sometimes it is better to be a frog in the pond and just RIBBIT my way through life....and today, is just one of those days when I would rather be sitting on a lily pad...happily dreaming way....
Today..
We received word today that we have an appointment next week with the Retina specialist to begin the testing on Michael's eyes....another step being put into motion....We also know that the disability for Social Security (with all the paperwork) is being reviewed and we should hear something from them within the next month....There is "something" to do every day...but these are really simple tasks in the big scheme of things...So today...after doing the "mundane goddess" work of grocery shopping and general clean up...I am off to the movies with my mother and my sister... A girlie day for a couple of hours...cell phone put on vibrate and happy to be going out of the house for something "fun" to do!!! I have been pouring over pages and pages of blood work and trying to compare what it was to what it is now...and I think you have to be a scientist to see what is going on here...can't wait till my friend from Hospice can explain it all to me in laymans terms!! I once studied to be a nurse (so many...many years ago!!) but somehow I need to have someone who is not emotionally involved to help me better be prepared and offer me up some solid advice as to what questions to ask and when to start asking...But today...I am off to the movies...I put the papers in the envelope and I let them sit for another day....just no more today! Sometimes you just have to quit when you are ahead!! LOL
Going with the flow...
Has it been so many days that have gone by since last I posted here!!??? The best that I can say is...NO NEWS IS GOOD NEWS!! (she said with a smile!!) Today was blood work Monday...and I always hold my breath to see how my week is going to be...but this was GOOD NEWS MONDAY!! No blood washings AGAIN this week....the protein level actually went down a little from last week...He has however lost a total of 2 pounds in a week...Can't quite figure that one out myself seeing as he is constantly eating and is on predizone! But...the counts are "acceptable" and that is what really matters at this point....We are still on "watch" for temperature...for chills...for coughs...because the chemo makes your resistance to everything so low....so we tend to stay out of public places....(which seems to be working out as I have had a lot on my plate with work here to do!!) So keeping our fingers and toes crossed that all goes well and chemo will be on Friday...which is the 7 hour dose!! Hopefully I will be able to meet a friend for a cup of coffee....We have been trying to get together since the New Year and this might just be the day if my friend is not busy!! I am happily creating in my studio today...the sun is shining here in upstate NY....and as the song says..."I feel fine"!
Time Flies....
Seems as if my days are getting away from me....the older I get the more I realize how short the 24 hours in a day are!! And before I know it I am on to the next day...the next week...the next month!
I have had the wonderful pleasure of being lost in creative space...even while in the middle of all that is going on around me...and I am ever so grateful that I have this outlet for myself...But most of all I have been blessed so much this week from the personal mail from those who come here and especially from my WILD CHILDREN....You all ROCK!! I went to a retreat some 5 years ago (was it 5 years ago????!) and met and connected with 40 OUTSTANDING women...and we have been connected by our hearts forever since...and will continue to be for the rest of our days...Silence is sometimes spoken..but it cannot break the bonds that we all received over the 4 day retreat.... and my heart is over flowing with the outpouring from them. I am reminded that in the beginning of this process I was NOT allowed to reach out...to tell anyone...to share what it was that I was going through not to mention what Michael was going through....It was the DENY it factor....IT WILL GO AWAY if we just don't think or speak of it....Well....it did not go away....it will not go away...and I am feeling SO blessed to have this outlet...to be able to speak my mind here...to feel here...to let go here....to connect here...to be comforted here...to feel the outpouring of healing for ME here! Is that selfish???? I use to think so...but I no longer feel that way....I am in the middle of this....there is nothing I can do to change this....and my feelings do count! Thank you all for reminding me of the kindness of spirit....the love of friendship....and the hope for the future....For that I am forever grateful...and my heart is full....Today...may we all connect a little more with those we love...may we offer up our BEST self...may we let go of the things that are so unimportant...and may we focus on that which our heart holds in the highest light....Our love....for each other...and for our self.
I have had the wonderful pleasure of being lost in creative space...even while in the middle of all that is going on around me...and I am ever so grateful that I have this outlet for myself...But most of all I have been blessed so much this week from the personal mail from those who come here and especially from my WILD CHILDREN....You all ROCK!! I went to a retreat some 5 years ago (was it 5 years ago????!) and met and connected with 40 OUTSTANDING women...and we have been connected by our hearts forever since...and will continue to be for the rest of our days...Silence is sometimes spoken..but it cannot break the bonds that we all received over the 4 day retreat.... and my heart is over flowing with the outpouring from them. I am reminded that in the beginning of this process I was NOT allowed to reach out...to tell anyone...to share what it was that I was going through not to mention what Michael was going through....It was the DENY it factor....IT WILL GO AWAY if we just don't think or speak of it....Well....it did not go away....it will not go away...and I am feeling SO blessed to have this outlet...to be able to speak my mind here...to feel here...to let go here....to connect here...to be comforted here...to feel the outpouring of healing for ME here! Is that selfish???? I use to think so...but I no longer feel that way....I am in the middle of this....there is nothing I can do to change this....and my feelings do count! Thank you all for reminding me of the kindness of spirit....the love of friendship....and the hope for the future....For that I am forever grateful...and my heart is full....Today...may we all connect a little more with those we love...may we offer up our BEST self...may we let go of the things that are so unimportant...and may we focus on that which our heart holds in the highest light....Our love....for each other...and for our self.
Lost in Space!!
I have been lost in space the last few days....CREATIVE SPACE that is!!! I have been working on quite a few custom orders that I received over the past week....So I have been dreaming...and dancing and happily creating in my studio...in my living room...at the table...on the floor!! Anywhere and everywhere I can!!
We are in a quiet week here with Michael....I cannot complain at all!! (isn't that a wonderful thought!) Blood work showed that the protein levels were "acceptable" this week....once again sort of following the pattern of the norm for us....One week washing....one week off....one week washing...one week off! His white count is very low, but they have assured us that is "TO BE EXPECTED" because of the chemo....Heck...we are bombarded with commercials for drugs every day that give us the side effects that CAN happen and chemo is a powerful drug (we all know that for every GOOD thing a drug does there is usually a BAD thing too...I wonder about the ones that say..."may cause death in extreme cases....I mean, would I even take that drug if recommended to me?....how do I know I wouldn't be the EXTREME case! and how about the one that tells you it has been known to cause Lymphoma...I mean really....I understand that the drug companies have been sued and sued and sued again because no one reads the little pamphlets that come with the drug when we pick it up at the pharmacy but some of those commercials scare me and others make me laugh right out loud...what about the side effect that might cause you to gamble excessively...or want to much sex (that might not be a bad one to have!! LOL) ) So we are currently on "chemo watch"....we have to be very aware of fevers...chills....coughing... Because the white count is so low he could very easily get sick and he would not have enough good healthy white cells to ward off anything....This is an easy one to monitor....and in the process I get to stay in the studio and create to my hearts content....Making me ONE VERY HAPPY GIRL!!
We are in a quiet week here with Michael....I cannot complain at all!! (isn't that a wonderful thought!) Blood work showed that the protein levels were "acceptable" this week....once again sort of following the pattern of the norm for us....One week washing....one week off....one week washing...one week off! His white count is very low, but they have assured us that is "TO BE EXPECTED" because of the chemo....Heck...we are bombarded with commercials for drugs every day that give us the side effects that CAN happen and chemo is a powerful drug (we all know that for every GOOD thing a drug does there is usually a BAD thing too...I wonder about the ones that say..."may cause death in extreme cases....I mean, would I even take that drug if recommended to me?....how do I know I wouldn't be the EXTREME case! and how about the one that tells you it has been known to cause Lymphoma...I mean really....I understand that the drug companies have been sued and sued and sued again because no one reads the little pamphlets that come with the drug when we pick it up at the pharmacy but some of those commercials scare me and others make me laugh right out loud...what about the side effect that might cause you to gamble excessively...or want to much sex (that might not be a bad one to have!! LOL) ) So we are currently on "chemo watch"....we have to be very aware of fevers...chills....coughing... Because the white count is so low he could very easily get sick and he would not have enough good healthy white cells to ward off anything....This is an easy one to monitor....and in the process I get to stay in the studio and create to my hearts content....Making me ONE VERY HAPPY GIRL!!
A note of love...
Queen Mum sent me a wonderful note of encouragement today.... This beautiful desert photo was on the front of the note card....and here I share part of what she wrote....from her heart to mine....Thank you Queen Mum....you know how much you mean to me!"...you are hardy-tough....You have to be. No other choice. You are adaptive...you can bear fruit and bloom in spite of a harsh environment. Both aesthetic and thorny...pleasing but protective. Succulents are a source of a life sustaining substance; a striking example of the right relationship between form and function...able to survive periods of extreme drought while maintaining well-hydrated tissue. Your spines can be flexible and soft to rigid. You...like them are incredible.
For all who come here....my heart is full....Thank you so much for helping me as I walk through this journey...
" I HAVE always had the POWER!"
It is another day of blood washing before me....and I am turning a corner...turning over a new leaf...seeing things with new eyes!! LOL....Today, I am taking these 3 hours for myself!! That's right you read it correctly!! I have decided that my friend gave me GOOD advice...(although they did tell me the next day that "you did not learn anything NEW")...with that knowledge in hand I was reminded of a painting I did for one of the quotes I love so much...." You don't have to be afraid anymore....you have always had the power" from Glenda the Good witch of the North said to Dorothy as she clicked her heels 3 times to return to Kansas! So I am returning to Kansas today...I am clicking my heels 3 times...I am taking these 3 hours and settling in to the comfy chair that they provide....I am reading my good book....I am giving myself back the power to RELAX!
Michael is in GOOD hands with these Doctors....he is being cared for the BEST way they can...they are doing ALL that they can...all the worry....all the down time I give this will not change a thing...One good and fine thing that is coming out of this within the last months is that Michael is changing too....He is becoming more open...he is becoming more loving....he is becoming more comfortable with being out of work and taking all this in stride.(did I indeed NOT think for one moment that his life has been completely turned upside down? Did I ONLY think about how this was affecting me?) He is letting me in to some of his emotions and our bond is growing stronger for it....Things are shifting...and perhaps that is part of the lesson of all of this....things "happen" in everyones' life....and we sometimes hold onto the "bad" things so tightly that we have no idea how to let the good things in anymore....thus we give away our power! I have been feeling the shift within myself within these past months(realizing that I have been holding onto the bad things and not embracing all the good things) ....I have seen first hand what living with this did in a negative way...the fear...the unhappiness....SO TODAY....I focus on what GOOD is coming out of this...and believe me when I tell you, there is a lot of good....I am growing a little more comfortable with my role as caregiver (although I am sure I will complain now and then...grow tired here and there..but I believe that is natural) I am getting use to driving the BIG JEEP (which in itself may not seem like a big deal, but it is!! (LOL)... to the point where I am thinking of selling my little Oldsmobile Alero in the spring...I mean, we don't need 2 cars!) I am seeing once again the strength that I have that comes from the inside...I am beginning once again to see the logic of myself and the intelligence that I have...I am beginning once again to BELIEVE that everything is possible to handle once I allow myself to see the lesson...I am beginning to see once again what allowed my marriage to survive these 26 or so years....I am beginning to realize that love is a very powerful thing....and today, I give myself back some of that power!
Michael is in GOOD hands with these Doctors....he is being cared for the BEST way they can...they are doing ALL that they can...all the worry....all the down time I give this will not change a thing...One good and fine thing that is coming out of this within the last months is that Michael is changing too....He is becoming more open...he is becoming more loving....he is becoming more comfortable with being out of work and taking all this in stride.(did I indeed NOT think for one moment that his life has been completely turned upside down? Did I ONLY think about how this was affecting me?) He is letting me in to some of his emotions and our bond is growing stronger for it....Things are shifting...and perhaps that is part of the lesson of all of this....things "happen" in everyones' life....and we sometimes hold onto the "bad" things so tightly that we have no idea how to let the good things in anymore....thus we give away our power! I have been feeling the shift within myself within these past months(realizing that I have been holding onto the bad things and not embracing all the good things) ....I have seen first hand what living with this did in a negative way...the fear...the unhappiness....SO TODAY....I focus on what GOOD is coming out of this...and believe me when I tell you, there is a lot of good....I am growing a little more comfortable with my role as caregiver (although I am sure I will complain now and then...grow tired here and there..but I believe that is natural) I am getting use to driving the BIG JEEP (which in itself may not seem like a big deal, but it is!! (LOL)... to the point where I am thinking of selling my little Oldsmobile Alero in the spring...I mean, we don't need 2 cars!) I am seeing once again the strength that I have that comes from the inside...I am beginning once again to see the logic of myself and the intelligence that I have...I am beginning once again to BELIEVE that everything is possible to handle once I allow myself to see the lesson...I am beginning to see once again what allowed my marriage to survive these 26 or so years....I am beginning to realize that love is a very powerful thing....and today, I give myself back some of that power!
Subscribe to:
Posts (Atom)