"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!
Our eyes...
Yesterday, was a long day! We had an appointment with the eye Doctor hoping to find out if there was something that could be done about the distortion that is happening with Michaels' eyesight. The way he explains how he sees is that everything is very wavy...giving objects and people a elongated hour glass look....(Something like the Dali painting where everything appears to be melting) After having several Doctors look into his eyes...this is the conclusion at the present time (we will be going to a Retina specialist) His retina lining has become covered with the protein causing a wrinkling of the lining....so when the image of what he is looking at is processed to the brain he sees things thru this wrinkled lining and it distorts the image. Simply put the retina which is like the film for your vision is bad....he needs to change the film! More tests have to be done by the specialist to see if surgery is an option....So many things will come into play with that....this is not a normal retina problem because it is damage due to the protein.. his blood counts are low....this problem will continue as long as the protein levels are out of whack (so the surgery might only be temporary) The Oncologist would have to sign off on this surgery if it can be preformed (it only takes and hour for the surgery) and because he has had problems with clotting this might be a problem....So now we will wait till the paperwork goes through the VA and an appointment is set up with the specialist....Just one more thing to add to the list!! But, my hope is that he will be able to have the surgery....even if it only gives him temporary relief from this problem....I know that I for one, will be making an appointment to get my eyes tested and new glasses....certainly gives me a different prospective on how I take care of things for myself....
Thought for the day: TAKE GOOD CARE OF YOURSELF TODAY!
Reminded...
As I whirled and swirled yesterday....I was melancholy...my thinking was out of whack...my heart was hurting...and I reached out...reached out to someone who I have known for a long time...but who has recently been reintroduced to me....this friend gave me a gentle reminder last night amongst the words of encouragement...."Try to stay positive and try not to dwell too much on what might happen but rather on what you have right now." Simple words really....words that my heart knows, but sometimes has a hard time remembering....especially when in the middle of a muddle...
Words that this morning bring me comfort and strength....words that touch my soul....Reading these words and the words that have been left here in the comment section DO bring me to this spot...they DO help me...they DO allow my heart to listen carefully and be reminded....they DO allow the tears to flow out of me....When I type I sometimes am misunderstood...my heart allows words to flow easily on these pages....my heart does not wish to be broken...my heart knows no boundaries (which is both good and bad I am finding out!)....Today, as I reread the words that my friend wrote to me...I feel a strength to do that....will I fall from time to time...of course I will...that is human....to be overwhelmed with the negative not allowing yourself to dwell on the positive...So today...I thank my friend....I acknowledge that I will face this day with my heart focusing on what I have right now....this day....this day to share...this day to love...this day to rejoice in and enjoy....THIS DAY IS TODAY!
Words that this morning bring me comfort and strength....words that touch my soul....Reading these words and the words that have been left here in the comment section DO bring me to this spot...they DO help me...they DO allow my heart to listen carefully and be reminded....they DO allow the tears to flow out of me....When I type I sometimes am misunderstood...my heart allows words to flow easily on these pages....my heart does not wish to be broken...my heart knows no boundaries (which is both good and bad I am finding out!)....Today, as I reread the words that my friend wrote to me...I feel a strength to do that....will I fall from time to time...of course I will...that is human....to be overwhelmed with the negative not allowing yourself to dwell on the positive...So today...I thank my friend....I acknowledge that I will face this day with my heart focusing on what I have right now....this day....this day to share...this day to love...this day to rejoice in and enjoy....THIS DAY IS TODAY!
Not what I had hoped for...
Walking into the Doctor's office today I had great hope that this new cocktail was doing its job to fight ...kill off...to slow down the growth of the protein cells....The office staff was in good spirits...everyone was saying how good Michael looked...the blood was drawn....and we waited....
the first series of tests came back and the white cell and red cell count was holding its own. Which is a pretty good thing, because chemo kills off these healthy cells too ....but the lab was backed up from the holiday because so many people had opted to put their tests off till afterwards that the offices at the clinic were full today....So they sent us home and we were told they would call us with the results of the protein count....So we waited....for 3 hours till the call came....the protein count had gone back up and we will be going for the 2 days of blood washings....This is not what I had hoped for....this is not what I wanted to hear....We are going tomorrow to see if anything can be done about Michael's eyesight...To see if somehow the protein that has built up in the veins behind his eyes can be lessened so that he can see better...and then on Wednesday and Thursday we will do the 3 hours of blood washings each day....Michael is in far better spirits about this than I am...I do not let on how scared I am for him...for myself...I smile...I pat his hand...I wipe the sweat from his head....I kiss him...but life is changing for me, I can feel it...there is some core part of me that is scared to be alone...scared to face all of this...more scared than I have ever been in my life....Even when I was sick I was not this scared...I think that is because I heard the words of hope for myself..."I BELIEVE WE GOT IT ALL" ....with this I now hear..."WE WILL SEE WHAT OTHER OPTIONS MAY BE AVAILABLE TO YOU"...there is such a difference in those two statements....Such a difference knowing that there is NO CURE verses YOU'RE GOING TO BE ALRIGHT....Today, I did not hear what I had hoped for....that does not mean I am giving up HOPE....that just means that I have to readjust...I have to hope that next week will be better...and the week after that...as we get through the next 5 weeks....because after that...we will know....
the first series of tests came back and the white cell and red cell count was holding its own. Which is a pretty good thing, because chemo kills off these healthy cells too ....but the lab was backed up from the holiday because so many people had opted to put their tests off till afterwards that the offices at the clinic were full today....So they sent us home and we were told they would call us with the results of the protein count....So we waited....for 3 hours till the call came....the protein count had gone back up and we will be going for the 2 days of blood washings....This is not what I had hoped for....this is not what I wanted to hear....We are going tomorrow to see if anything can be done about Michael's eyesight...To see if somehow the protein that has built up in the veins behind his eyes can be lessened so that he can see better...and then on Wednesday and Thursday we will do the 3 hours of blood washings each day....Michael is in far better spirits about this than I am...I do not let on how scared I am for him...for myself...I smile...I pat his hand...I wipe the sweat from his head....I kiss him...but life is changing for me, I can feel it...there is some core part of me that is scared to be alone...scared to face all of this...more scared than I have ever been in my life....Even when I was sick I was not this scared...I think that is because I heard the words of hope for myself..."I BELIEVE WE GOT IT ALL" ....with this I now hear..."WE WILL SEE WHAT OTHER OPTIONS MAY BE AVAILABLE TO YOU"...there is such a difference in those two statements....Such a difference knowing that there is NO CURE verses YOU'RE GOING TO BE ALRIGHT....Today, I did not hear what I had hoped for....that does not mean I am giving up HOPE....that just means that I have to readjust...I have to hope that next week will be better...and the week after that...as we get through the next 5 weeks....because after that...we will know....
Side Effects ...
Today, has been a day of side effects from the new chemo cocktail....Running a fever was the first one....as that passed...then came the cold sweats....and sleep...lots of lots of sleep....I wipe his head down from all the sweat...I make him comfortable...I try to get him to eat and drink enough fluids...
He has numbness in his finger tips and in his toes....and a sharp pain on either side of his temples.
The visiting nurse said that all those things are due to the chemo....but if they get worse than we are to call the Doctor ASAP....The problem is that Michael is not a complainer...and I have to force this information out of him....Now, I can usually see some of the difference in his behavior...but I certainly can't feel the level of pain or discomfort...I am tired....tonight...and yet, I cannot sleep...keeping one eye open and both ears listening to sounds that may give me some idea ...a moan...a discomfort sound...I am hoping tomorrow will be a better day....that things will start to disappear...and that I will be able to help him in better ways...
He has numbness in his finger tips and in his toes....and a sharp pain on either side of his temples.
The visiting nurse said that all those things are due to the chemo....but if they get worse than we are to call the Doctor ASAP....The problem is that Michael is not a complainer...and I have to force this information out of him....Now, I can usually see some of the difference in his behavior...but I certainly can't feel the level of pain or discomfort...I am tired....tonight...and yet, I cannot sleep...keeping one eye open and both ears listening to sounds that may give me some idea ...a moan...a discomfort sound...I am hoping tomorrow will be a better day....that things will start to disappear...and that I will be able to help him in better ways...
Fear Factor....
Upon seeing the Doctor today, they have added another medication to his chemo cocktail...
So this new cocktail will take 6 hours to administer...There is only 2 more cocktails to go....and if
these 3 new concoctions do not take hold...if they do not stop the growth of this protein that is being made in his bone marrow at a pretty good rate...(we know that because of the blood washings that still have to be done as his protein rate rises) then we have to have the SIT DOWN and get the final facts...the sit down that tells us if there is anything MORE that they can do to stop the growth of this protein....the sit down that hands us our future....Now that certainly is a FEAR FACTOR!! I am holding onto HOPE....I am holding onto FAITH....I am holding ON....as is Michael that we have MORE time to do the things that we have planned to do...MORE time to enjoy the time with our grandson...MORE time to be able to see the warm weather....MORE TIME!
We have not had a "perfect" marriage...but then I doubt that anyone can say that they have...We have been together for some 26 years...making it through the good and the bad years....I am learning that letting go of things I have held on to is the best possible thing to do at this moment...To forgive myself...and forgive Michael...to forgive others for past hurts and to ENJOY what time we have together...to laugh more...to talk more...to gather together more with those we love...
But when you put in the FEAR FACTOR....it leaves me knowing that MORE is a word that comes to mind....
Be mindful today...to kiss those that you love....to hug and hold them just a little bit tighter...and to tell them that you love them....as none of us ever know just how much MORE time we have...
So this new cocktail will take 6 hours to administer...There is only 2 more cocktails to go....and if
these 3 new concoctions do not take hold...if they do not stop the growth of this protein that is being made in his bone marrow at a pretty good rate...(we know that because of the blood washings that still have to be done as his protein rate rises) then we have to have the SIT DOWN and get the final facts...the sit down that tells us if there is anything MORE that they can do to stop the growth of this protein....the sit down that hands us our future....Now that certainly is a FEAR FACTOR!! I am holding onto HOPE....I am holding onto FAITH....I am holding ON....as is Michael that we have MORE time to do the things that we have planned to do...MORE time to enjoy the time with our grandson...MORE time to be able to see the warm weather....MORE TIME!
We have not had a "perfect" marriage...but then I doubt that anyone can say that they have...We have been together for some 26 years...making it through the good and the bad years....I am learning that letting go of things I have held on to is the best possible thing to do at this moment...To forgive myself...and forgive Michael...to forgive others for past hurts and to ENJOY what time we have together...to laugh more...to talk more...to gather together more with those we love...
But when you put in the FEAR FACTOR....it leaves me knowing that MORE is a word that comes to mind....
Be mindful today...to kiss those that you love....to hug and hold them just a little bit tighter...and to tell them that you love them....as none of us ever know just how much MORE time we have...
5 hours...
Today is 5 hour chemo day! By the time we get to the Doctor's office...do all the regular things...weight...blood pressure and temp...and then talk with the Doctor and a short exam an hour has gone by....then getting set up for the treatment takes a while...all in all....from 10 till 4:30 we will be at the hematology clinic...So I gather some books...some pencils...and new sharpie and my strength as I prepare to start this day....I will look at these hours as a moment where I do not have to do anything...I do not have to run anywhere...or answer a phone...or do mundane housework...I will look at these hours as a stolen day to sketch and read...and nap...quietly using it...selfishly using it as time for myself also....My biggest hope is that the side effects that Michael experienced last time do not show them self to such a degree this time....
Caregiving....
When someone is diagnosed with a blood cancer it dramatically affect the lives of families and all others who have a relationship with the patient. The patient and the entire family will experience an emotional, physical and, possibly, a financial impact. Each will have to rearrange his or her daily activities to some degree, and these changes do not come easily to any of the people involved. And in my case there is no one else that can help with the daily running to Doctors' and other appointments. I am blessed to have friends and relatives that help with things that I cannot do...snow blowing the driveway...car maintenance...helping with paperwork that needs to be notarized or if I need something from the store and can't get out...listening...loving...and phone calls of support along with e mails come in daily from a network cast near and far...
Family caregivers have become a vital extension of the healthcare team. Blood cancers are often treated on an outpatient basis, leaving the responsibility of the details of patient management to a caregiver.
In October 2000, The National Family Caregivers Association estimated that there were 25 million Americans taking care of a spouse, child, aging parent or other loved one. Whether you are new to caregiving or it has become a way of life, the daily struggle you face in caring for someone else's basic needs can be overwhelming. The level of help a person needs from their caregiver varies from light assistance to total care. And my thoughts and well wishes are with you and your loved one....My heart goes out to all of you....
Caregiving often starts gradually with tasks such as driving to medical appointments, shopping for groceries, and housecleaning. However, over time you may provide more care, perhaps even providing round-the-clock care.
If you know anyone....anyone at all who is a caregiver...PLEASE, don't ask them if they need help...as they will usually say NO....just do something nice...make a meal and take it over...send a card to them to let them know that THEY are in your thoughts....Offer them an ear...offer them your heart...offer them love! When everyone is focused on the patient...the caregiver sometimes just gets lost in the shuffle....
HAPPY NEW YEAR!!!!!!!!
We celebrated the coming of the New Year at my sister's house by having a PJ Party!!From left to right...My niece (Michele) her husband (Jim) my great niece (Ashley) my sister (Nancy) behind her is her husband (Kenny) then there is Michael and Me and our grandson (Collin) We had lots of fun...lots of food...hats..noise makers and called it an evening around 10:00 We drove home...got the little guy to bed and thought SURE WE WILL STAY UP TILL 12:00 I woke up just as the were counting down at 5...4...3...2...1... HAPPY NEW YEAR!! It is tradition here for me to stand outside on the porch and ring a bell at midnight which I did....Making my wish with each ring....I am wishing all....GOOD HEALTH....MUCH LOVE...GREAT LAUGHTER...DREAMS THAT COME TRUE...AND RECOGNIZING THE BLESSINGS OF ALL! May 2009 bring us all the peace that we wish for from within....
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