to slow down...to rest...to think few thoughts....I am forced to do all these WELCOMED things because I have a wicked cold....Thank heaven for Night Time cold medicine that knocks you out!!
And is allowing me to catch up on some much needed sleep!
Off to join the circus!
I remember when I was little and something went wrong so that my parents were mad at me for something...I would want to run away...my mother would ask...."Where are you going to go? Are you going to go off to join the circus?"....Where was I going to go? So I would sit in my secret spot (not so secret because everyone knew where it was...but it was my spot) and I would let whatever emotions out that needed to come out till finally I could face the world again....Today, is one of those days....I want to run away...go off and join the circus....Michael does not always say what he thinks...but thinks he does or has...Today, I had errands to run...custom orders to deliver...grocery shopping...you know some of the mundane of life...but it gives me an opportunity to get out of the house even if it is for a short time....Today I got yelled at for not taking him along...He does not get out of the car when I run errands...and today I was going to be gone longer and it was 45 degrees outside....not a day to be sitting in the car...not to mention the pressure I feel about getting things done hurriedly because he is waiting in the car...and then I usually forget something and have to make another trip back...today, I just needed this little alone time...I tried to explain that this was not a good day to come with me...that I would be gone longer than usual...that it was to cold outside (and due to his poor circulation he cannot get cold)
that the visiting nurse would be there soon and I wanted to do these things in the morning and not later in the day (when he usually is so much more tired anyhow) but I still got yelled at...I still was the mean girl...I still did not understand...I still was taking things away from him...I still was.....So today....I wanted to get in that car and take the day and run off and join the circus!! Or at the very least find a spot where I could let whatever emotions come out that needed to come out so that I could face the world again....BRING IN THE CLOWNS!! I need a good laugh!!
that the visiting nurse would be there soon and I wanted to do these things in the morning and not later in the day (when he usually is so much more tired anyhow) but I still got yelled at...I still was the mean girl...I still did not understand...I still was taking things away from him...I still was.....So today....I wanted to get in that car and take the day and run off and join the circus!! Or at the very least find a spot where I could let whatever emotions come out that needed to come out so that I could face the world again....BRING IN THE CLOWNS!! I need a good laugh!!
Things I have noticed...
I started a running journal of things that Michael does or does not do in the course of the day. This is not only to keep me aware of the changes that are going on, but also allows me to remember what it is that I want to tell the Doctor (ever wonder why after you leave a Doctor's office you always remember something else you wanted to ask?! Why is it that we get so flustered in the office? They are only humans after all!) Anyhow...I have noticed several things over the past few days...Michael is starting to lose his hearing...He leans forward as if to listen more closely...he also cups his ear with his hand when I am talking...and tells me that I am speaking to softly...(I just use my normal voice!!) The TV is on very loudly (driving me crazy!!) and so is the stereo (which if I am upstairs is tolerable!) Checking into the type of cancer that he has...it is one of the symptoms...I only know this from the Internet....Thank goodness for the Internet!! I wonder why Doctors don't tell you what some of the things are that might happen...Now, if you notice all the commercials on TV lately for any drugs...they tell you every side effect you might have if you take that drug...even so far as to say...it may cause death...now...I am not sure if I would even take a drug that might cause death..but that is another story....Right now...I notice that he rarely gets out of his chair...he rarely talks....he rarely remembers what it was that we just talked about...and he rarely hears anything that I say....Just things I have noticed...and put in my Doctor journal...so I will remember to let her know....
One step at a time..
Anyone who really knows me...knows that I do not do well this time of year...haunted by past memories that always come up in November no matter how hard I try to submerge them...They are there...they are a part of me...they have made me who I am today...But revisiting them is often hard...and no matter how much I try they are there every year...So here we are in November...my anxious feelings are lying there underneath all that is going on here...causing me to cry at the drop of a pin...sleep a little more than normal...be a little short...But I continue on...one step at a time...knowing that the emotions will sleep once again...knowing that I have gotten through this period of time for the past 39 years...Knowing that the decisions that were made that fall of 1969 were perhaps the bravest and most unselfish decisions I have ever made in my life...And knowing that here I am in 2008 facing other things that are hard...So I step...one foot in front of the other...I allow myself alone time to cry...I connect when I need to...I withdraw with I have to...and I bake brownies!! I eat ice cream...and I watch reality TV...because all of that requires me not to think anything....
Birth and Death...
There are few things in life that are a given....birth and death are the top two for me...
Today, I received word of 2 new babies....2 brand new lives to grace this earth...to bring to us happiness...joy...and love. 2 brand new babies...my heart is full with the wonder of it....Today, I received word of 2 people dealing with a death of a love one....2 people gone who once held the love of others in the palm of their hands...who laughed and sang and enjoyed a good life...2 people who will no longer grace this earth....
Birth and death....they sort of go hand in hand...for each day we step closer to the end in reality...some comes quicker than others, torn from us before the time would allow all the love to be shown (My friend Carol has witnessed that....Lisa...Lori along with so many others) What is apparent to me today...is today is IT....use IT...love IT...enjoy IT...expose all you are with all the love you have...because today is the day that you have to do that in...
Today, I received word of 2 new babies....2 brand new lives to grace this earth...to bring to us happiness...joy...and love. 2 brand new babies...my heart is full with the wonder of it....Today, I received word of 2 people dealing with a death of a love one....2 people gone who once held the love of others in the palm of their hands...who laughed and sang and enjoyed a good life...2 people who will no longer grace this earth....
Birth and death....they sort of go hand in hand...for each day we step closer to the end in reality...some comes quicker than others, torn from us before the time would allow all the love to be shown (My friend Carol has witnessed that....Lisa...Lori along with so many others) What is apparent to me today...is today is IT....use IT...love IT...enjoy IT...expose all you are with all the love you have...because today is the day that you have to do that in...
quiet...
It has been a very quiet day today...the phone has hardly rung (which is a blessing and a terror)..
I don't have to answer questions...(the blessing) and I don't have to answer questions (the terror) Now why is that????
I know that doesn't make much sense...but it does to me...sometimes answering the question "How are you doing?". Is a difficult one to answer...because most of the time...I don't know how I am doing! Which sort of makes me laugh as I type that!!(so what else is new...did you ever know how you were doing?!?! LOL) And then, when the phone doesn't ring...I wonder if perhaps my words are too much for people to hear...and yet I have to get them out...Oh what a circle!! So today, is a quiet day...Michael has been sleeping most of the day which means comes Monday when they do his blood work they will tell us once again that a blood transfusion is necessary...which tells me that things are not really any better...Hard to hold on to hope when that seems to be what happens...As the days drift into weeks I watch....I see the difference in his mood..in his temperament...in his body...His skin is starting to hang on his bones as his muscles break down...He has a difficult time walking and side steps a lot to keep his balance...And now there is a smell about him....I am not sure what that smell is or how to describe it to myself...but as I look into those green eyes I see something that was not there before...I see a murky film...a lack of sparkle...a vacant look...
And with this quiet day...I have a sense of fear...I know that I am not the only person who has ever gone through something like this...I know that I am not the only person going through this at this very moment...but today, in the quiet...I feel very much alone.
I don't have to answer questions...(the blessing) and I don't have to answer questions (the terror) Now why is that????
I know that doesn't make much sense...but it does to me...sometimes answering the question "How are you doing?". Is a difficult one to answer...because most of the time...I don't know how I am doing! Which sort of makes me laugh as I type that!!(so what else is new...did you ever know how you were doing?!?! LOL) And then, when the phone doesn't ring...I wonder if perhaps my words are too much for people to hear...and yet I have to get them out...Oh what a circle!! So today, is a quiet day...Michael has been sleeping most of the day which means comes Monday when they do his blood work they will tell us once again that a blood transfusion is necessary...which tells me that things are not really any better...Hard to hold on to hope when that seems to be what happens...As the days drift into weeks I watch....I see the difference in his mood..in his temperament...in his body...His skin is starting to hang on his bones as his muscles break down...He has a difficult time walking and side steps a lot to keep his balance...And now there is a smell about him....I am not sure what that smell is or how to describe it to myself...but as I look into those green eyes I see something that was not there before...I see a murky film...a lack of sparkle...a vacant look...
And with this quiet day...I have a sense of fear...I know that I am not the only person who has ever gone through something like this...I know that I am not the only person going through this at this very moment...but today, in the quiet...I feel very much alone.
Somewhat Normal Day...
It has been difficult to live a "normal" life lately...So I decided to take matters into my own hands and do something about that! We use to watch our grandson on Fridays when my daughter went to work...we have been doing this for 3 years now...and he would sleep over night (our pj party!) every other weekend...that all ended in August...So today....the little one came for the day. The laughter...the joy...the sometimes trying moments of a 3 1/2 year old...the dancing..the singing...the book reading...all were present today...It was a somewhat normal Friday...Now, he does not understand that Papa can't give him airplane rides... or spend hours and hours playing and building and going to the park anymore...but he does understand that he can curl up in Papa's big chair and have a rest with him...That Papa has a big band aid and some tubes that the Doctor gave him for being a good boy...He asks politely..."Papa do you feel better now that you took your medicine" and Papa says YES I do...and he says..."I am so happy...now let's play" and off they go with flashlights in hand in search of monsters in the basement...Papa in his jammies and the little one in his Superman costume that cannot be torn off him since before Halloween. Yes...today, was somewhat of a normal day...and a good day. Now, I know that I cannot do this every Friday anymore...and probably less sleep overs than I would like to imagine...But today, I smile..the boys played and Moma smiled! It was a somewhat normal day!
My heart goes out....
There are so many places that I would like to be right now....but I can't be...so my heart goes out...
My heart goes out to my very good friends in Baltimore who are dealing with several family problems...I wish I could be there for my friend, Lori to make a cup of tea and have a cookie or two so that she could take a moment for herself as she faces the medical problems that her husband, my good friend, Marc is going through....My heart goes out to a friend who has a 4 year old grandson who just was diagnosed with cancer...My heart goes out to Pat in Atlanta (and Lisa) who has a son, a young father who has been very ill, but continues to fight the good fight (and yet she took the time to write me to sooth my soul)...My heart goes out to all the families that I see in the Oncologists office as they sit silently with their loved ones (of all ages) ... My heart goes out...My heart goes out to my friend, Chris who has difficult decisions to make...
Perhaps I have not been aware of the things that have been going on around me before now...perhaps they did not hit me the way they have before now...perhaps my heart is growing with compassion for others as well as myself...perhaps my eyes are being opened to my surroundings more...My heart is going out today....I am sending positive energy and healing light ...I am sending love and compassion to all who need it today....And I am going to focus my energy on the wonderful things of life today...the little things...the one thing that will make me smile...the one thing that perhaps will make me laugh... I am going to focus my attention on LIVING rather than on dying....My heart is going out today to all those in need...and I will be more gentle even with myself...
My heart goes out to my very good friends in Baltimore who are dealing with several family problems...I wish I could be there for my friend, Lori to make a cup of tea and have a cookie or two so that she could take a moment for herself as she faces the medical problems that her husband, my good friend, Marc is going through....My heart goes out to a friend who has a 4 year old grandson who just was diagnosed with cancer...My heart goes out to Pat in Atlanta (and Lisa) who has a son, a young father who has been very ill, but continues to fight the good fight (and yet she took the time to write me to sooth my soul)...My heart goes out to all the families that I see in the Oncologists office as they sit silently with their loved ones (of all ages) ... My heart goes out...My heart goes out to my friend, Chris who has difficult decisions to make...
Perhaps I have not been aware of the things that have been going on around me before now...perhaps they did not hit me the way they have before now...perhaps my heart is growing with compassion for others as well as myself...perhaps my eyes are being opened to my surroundings more...My heart is going out today....I am sending positive energy and healing light ...I am sending love and compassion to all who need it today....And I am going to focus my energy on the wonderful things of life today...the little things...the one thing that will make me smile...the one thing that perhaps will make me laugh... I am going to focus my attention on LIVING rather than on dying....My heart is going out today to all those in need...and I will be more gentle even with myself...
Making a come back...
For the last several days I have been in the paint....that is the term that I use when I am being creative! IN THE PAINT! WOW! It feels good...I have yet to be inspired enough to get back into my affirmations, but it will come when it is ready to...But the paint is making me happy. I am working on making a tote bag with my sister...PAINT AND SEW!! (I paint...she sews!) It is a good collaboration! My sister has been FABULOUS to me during this time...she has listened to me as I cried...listened to me as I voiced my fears...listened to be when I complain...she has made soup and brought over dinners on the long days of chemo or blood transfusions...she has taken me to the movies and out to lunch...My sister is a very religious person so she also prays for us every day...I am surrounded by a great many wonderful people...I realize how much that means...I also realize how some people "disappear" when things like this happen...and I wonder why...but I count my blessings for those who show their love...I count my blessings to all who comment on this site...I count my blessings tonight...and there are many!
FREE cup of coffee...
Starbucks gave away FREE cups of coffee today if you showed them your I VOTED TODAY sticker...I had the wonderful pleasure of meeting a kindred spirit for a "cup of " this afternoon....I gave myself 2 hours off for "good behavior" today! (a friend of Michael's was coming to visit and they would do that Football talk...so it was a wonderful excuse to get out!) Anyhow...here in upstate NY it was a beautiful fall day and my friend and I could sit outside at Starbucks and drink our coffee and chat like two little magpie's!! It was FANTASTIC....I always walk away from this time with this wonderful soul full of hope ...full of love...full of understanding...full of renewed conviction...We are like spirits...A chance meeting in 1991 gave us a starting point to friendship...both of us were "stitchers" (cross stitching was once a huge passion for me) and I was her picture framer....Anyhow...the friendship blossomed and grew...The one thing about this friendship is that it is SO HONEST....it is a friendship where we can speak our peace...tell each other our deepest secrets and air our dirty laundry...no questions asked...no condemning...Only support and love given between us...We are so much alike that we seem to have been cut from the same cloth....I love this woman...she has done more for me than she will ever know...and I hope that I have done half as much for her....It was a wonderful day...and I got a FREE cup of coffee!! You just have to LOVE that!!
What is my job????
So another day at the Doctor's office...we go every Monday morning to have blood drawn to see if the chemo has been effective in any way in stopping the growth of the protein cells that his bone marrow makes...and the ONLY way you know if it is NOT working is...if he has to have a blood transfusion....And the second week running since we started chemo treatments....He has to have a blood transfusion! Now, I am NO... rocket scientist...NO.. math wizard...NO...noble prize winner...and I am certainly NOT a brain surgeon...but I don't think it takes any of those to tell me what is going on here....His body continues to make the bad protein cells....He did gain a pound!! Must be that none stop eating that the prednisone does to his appetite...They did tell us today, that the cancer is in 75% of his bone marrow...and that we must be patient...and hopeful...HELLO!!
Tell me something I don't know!! Now....I am not MAD...I am frustrated...So...What is my job???
My job is to educate myself....My job is to find out as much as I possibly can to become an informed caregiver...My job is to know what questions to ask to get the answers that I need...My job is to be a cheerleader...My job is to be a chief ...cook...and bottle washer....My job is to be the strength when the chips are down...My job is to take care of paperwork...housework...bills...home repairs...My job...is to give unconditional love....(That is the most important job of all!)
In this day of so many law suits against Doctors I understand their need to cover all the bases...I understand that when dealing with cancer there are those that survive (even against all odds) and those that do not...( I am a cancer survivor for 22 years now) I understand that faith and hope are the corner stones of most peoples recovery or with their ability to live with cancer. I understand all of this....but as I sit here tonight....I am wanting to have some straight forward answers....How many times do we do these treatments? How long do we have in between each round? What are the other options that we have? What should I be prepared for? These are questions that my good husband does not want answers for...So it is my job...to find these answers out to ease my mind...to let me be better able to care for him....and cheer him on!! That is my job also....PHEW!! To many jobs if you ask me....Can I turn in my time card?!?!? And do I get overtime?!?!? ....Tomorrow as I sit for the 3 hours as he gets his blood transfusion...I bought a new book to read...TWILIGHT ...Hope it is a good one...thought it was appropriate...it is about vampires!! At least I still have my sense of humor!!
Tell me something I don't know!! Now....I am not MAD...I am frustrated...So...What is my job???
My job is to educate myself....My job is to find out as much as I possibly can to become an informed caregiver...My job is to know what questions to ask to get the answers that I need...My job is to be a cheerleader...My job is to be a chief ...cook...and bottle washer....My job is to be the strength when the chips are down...My job is to take care of paperwork...housework...bills...home repairs...My job...is to give unconditional love....(That is the most important job of all!)
In this day of so many law suits against Doctors I understand their need to cover all the bases...I understand that when dealing with cancer there are those that survive (even against all odds) and those that do not...( I am a cancer survivor for 22 years now) I understand that faith and hope are the corner stones of most peoples recovery or with their ability to live with cancer. I understand all of this....but as I sit here tonight....I am wanting to have some straight forward answers....How many times do we do these treatments? How long do we have in between each round? What are the other options that we have? What should I be prepared for? These are questions that my good husband does not want answers for...So it is my job...to find these answers out to ease my mind...to let me be better able to care for him....and cheer him on!! That is my job also....PHEW!! To many jobs if you ask me....Can I turn in my time card?!?!? And do I get overtime?!?!? ....Tomorrow as I sit for the 3 hours as he gets his blood transfusion...I bought a new book to read...TWILIGHT ...Hope it is a good one...thought it was appropriate...it is about vampires!! At least I still have my sense of humor!!
Sick...
The last couple days I have been sick...running through the gamete of chills and fevers..and upset stomach and body aches....all the while still having to make meals and take care of things...Now, I know this is no strange task...I use to do this when I was a "mother"...heck, mothers aren't allowed to get sick...but in the past once the kids flew the nest I had the luxury of being sick and laying on the sofa all day...having someone else take care of me...getting me soup and ginger ale...fresh ice when needed....OH...how spoiled I was!! Things were taken care of and all I had to do was sleep and feel better...get my head rubbed!! Selfishly I longed for those days ....I am starting to feel better...and tomorrow I will have to get to all those things that have been left undone the past few days....As I did lay there on the sofa I longed for the "good old days" when just the flu was all I had to contend with...
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