Sometimes...you have to take the focus off yourself...and look at the situations of others....to remind yourself that things are not so bad.....and to see the positive energy that surrounds you....even when you feel as if you are in the middle of muddle! For several days I have been doing just that....I have been helping others....seeing different situations from the eyes of others...looking at the positive I have in my life....
Once we get ourselves in that "negative" mind frame, it is often difficult to get out of it....I have never been one to say..."WHY ME?" but I have been know to say..."What the F@#*!" ...(not very lady like I humbly admit, but I did grow up in the city!!)
I have been looking at the wonderful...loving...and positive side to my life these past few days, more so than normal.....I have been trying to see how I can better help someone else in order to better help myself in the return....I have been dreaming and focusing on artwork that I will donate to different causes (my favorite: The Breast Cancer Coalition of Rochester) I have been surfing the net looking at inspiring art by people living with cancer...I have been blessed to be cancer free myself some 22 years now....I have been acting and behaving more like ME than I have in the past 10 months since this journey began....
Sometimes.....you just have to pull up your boots....pull on the big girl panties...and walk forward
through the mud...through the rain...through your life in order to reach an oasis....where you can rest....Today I am standing at the oasis....
What stage are we at?
I get that question a lot...what stage?...what is the prognosis?...how long does he have? I realize those are questions that are normal when dealing with cancer....
This rare blood cancer that he has is unpredictable....it has no rhyme or reason to it...So I always have a difficult time answering those questions...
What stage: Stage IV
What is the prognosis: There is no cure for this cancer
How long: No one can tell us that (and I am not sure I would even want to know)
Today, we went to the dentist...Michael has lost a lot of teeth from this cancer (it is one of the weird things that it does) and now we have found out that he also has significant bone loss in his mouth...
So...the dentist is going to consult with the oncologist....who will consult with the VA doctors who will council us (do you follow that!! ) Because of the blood clots and being on the Coumadin plus the fact that his immune system is compromised they are not sure what the next steps would be....leave it alone....pull the rest of his teeth to prevent infections...So now we will wait till next week to find out the best plan of action. And take it from there....
So what stage are we at?
We are at the stage where we just do the best that we can each and every day....we smile when we can....we laugh when we can...we sit and talk...or just sit....we tell jokes and we play with our grandson...we get together with family and friends more...and we live life the best that we can each and every day.
This rare blood cancer that he has is unpredictable....it has no rhyme or reason to it...So I always have a difficult time answering those questions...
What stage: Stage IV
What is the prognosis: There is no cure for this cancer
How long: No one can tell us that (and I am not sure I would even want to know)
Today, we went to the dentist...Michael has lost a lot of teeth from this cancer (it is one of the weird things that it does) and now we have found out that he also has significant bone loss in his mouth...
So...the dentist is going to consult with the oncologist....who will consult with the VA doctors who will council us (do you follow that!! ) Because of the blood clots and being on the Coumadin plus the fact that his immune system is compromised they are not sure what the next steps would be....leave it alone....pull the rest of his teeth to prevent infections...So now we will wait till next week to find out the best plan of action. And take it from there....
So what stage are we at?
We are at the stage where we just do the best that we can each and every day....we smile when we can....we laugh when we can...we sit and talk...or just sit....we tell jokes and we play with our grandson...we get together with family and friends more...and we live life the best that we can each and every day.
Questions....
Many people offer me support here and off line....many people have eased my troubled mind...helped to sooth my soul and given me the extra strength on days I thought I had no more...and given me a shoulder to cry on when my defenses were down....these questions were written to me yesterday....and I have tried to answer them....I have touched them...turned them over gently...and held them... smoothing out the wrinkles that are ME to get to the truth of how I feel....They have been food for thought over the past 24 hours....and teach me a little more about myself....
I understand what you say about how you can't make people do what you think they should do, but what do you THINK they should do? After all you've gone through over the last year, do you think that you should carry things through? Are you OK with just quitting now?
I still come back to the same answers...We are all responsible for our self....no matter how much ranting or raving we do, that causes our heart to ache or our hearts to break we CAN NOT make anyone do what we think is best for them....what we think we may or may not do ....everyone must make decisions for them self....We can guide our children in directions when they are young...we can give them the tools to make choices...but eventually we must allow them to use their own judgment...to fly or fall....and as adults we may seek the advice of others when faced with decisions....we might take it....we might not...ultimately I have found that we are really just thinking out loud....we are trying to figure it out and rather than letting the questions we have for our self roll around and rattle inside our heads we verbally pass them outward...to a friend...to a relative....to a stranger at times....not always seeking an answer from them, but rather to hear the question from the outside rather than from the inside....
So what do I think should be done????? I believe I would do the MOST I could do to prolong my life....but does that mean that I would take chances...bet on the outcome...know at this moment what is right for me? NO....I do not believe that....for I can not know what it is like to walk in his shoes....His shoes at this moment are way to big for me....I flop around in them...they are not comfortable for me...they are heavy and cumbersome with steel toes that hurt me...and I can not make them fit me no matter how hard I try....
DO I think that I should carry things through???? I believe that my role will continue to be exactly as it is....that I will continue to transport him to Doctor's appointments...that I will continue to be chief cook and bottle washer....that I will continue to handle the responsibilities that come along with being a caregiver....So in that case I am carrying things through....I am continuing on....I have not changed my direction in any way...
Am I OK with quitting now????? I am not quitting.....and is Michael quitting? Or is he following his heart and doing what is best for him? That is a question that only he can answer....I will not and can not allow myself to go there....for I truly believe that it is my role to accept the decision that he makes for him self (it does not mean that I will necessarily like his decision)....I can give him information...I can gently voice my opinion (but I tend not to) I could talk till I am blue in the face....and he will still make the decision that is best for him....When we do something because some one else wants us to we often become resentful and it is done half heartily...and we do not give our all....
As we all go through life we walk to edges....sometimes we run backwards in fear...sometimes we leap with faith and learn how to fly....sometimes we stand at the edge waiting....waiting for a good wind to show us a direction....
That is where I am right now....on the edge....waiting....waiting for the wind to show me how to best use my own wings....
I understand what you say about how you can't make people do what you think they should do, but what do you THINK they should do? After all you've gone through over the last year, do you think that you should carry things through? Are you OK with just quitting now?
I still come back to the same answers...We are all responsible for our self....no matter how much ranting or raving we do, that causes our heart to ache or our hearts to break we CAN NOT make anyone do what we think is best for them....what we think we may or may not do ....everyone must make decisions for them self....We can guide our children in directions when they are young...we can give them the tools to make choices...but eventually we must allow them to use their own judgment...to fly or fall....and as adults we may seek the advice of others when faced with decisions....we might take it....we might not...ultimately I have found that we are really just thinking out loud....we are trying to figure it out and rather than letting the questions we have for our self roll around and rattle inside our heads we verbally pass them outward...to a friend...to a relative....to a stranger at times....not always seeking an answer from them, but rather to hear the question from the outside rather than from the inside....
So what do I think should be done????? I believe I would do the MOST I could do to prolong my life....but does that mean that I would take chances...bet on the outcome...know at this moment what is right for me? NO....I do not believe that....for I can not know what it is like to walk in his shoes....His shoes at this moment are way to big for me....I flop around in them...they are not comfortable for me...they are heavy and cumbersome with steel toes that hurt me...and I can not make them fit me no matter how hard I try....
DO I think that I should carry things through???? I believe that my role will continue to be exactly as it is....that I will continue to transport him to Doctor's appointments...that I will continue to be chief cook and bottle washer....that I will continue to handle the responsibilities that come along with being a caregiver....So in that case I am carrying things through....I am continuing on....I have not changed my direction in any way...
Am I OK with quitting now????? I am not quitting.....and is Michael quitting? Or is he following his heart and doing what is best for him? That is a question that only he can answer....I will not and can not allow myself to go there....for I truly believe that it is my role to accept the decision that he makes for him self (it does not mean that I will necessarily like his decision)....I can give him information...I can gently voice my opinion (but I tend not to) I could talk till I am blue in the face....and he will still make the decision that is best for him....When we do something because some one else wants us to we often become resentful and it is done half heartily...and we do not give our all....
As we all go through life we walk to edges....sometimes we run backwards in fear...sometimes we leap with faith and learn how to fly....sometimes we stand at the edge waiting....waiting for a good wind to show us a direction....
That is where I am right now....on the edge....waiting....waiting for the wind to show me how to best use my own wings....
Chicken Soup...
They have all sorts of books out called...Chicken Soup for the Soul...Chicken Soup for the Teen...
Chicken Soup...But there is nothing quite like a bowl of homemade Chicken soup to heal the soul with love from one heart to another....Thank You Phyllis! You did my heart good! And reminded me of a song that Carley Simon sang...and my kids use to love....a poem written by Maurice Sendak....My heart is still singing!
January
In January it's so nice
While slipping on the sliding ice
To sip hot chicken soup with rice
Sipping once, sipping twice
Sipping chicken soup with rice
February
In February it will be
My snowman's anniversary
With cake for him and soup for me!
Happy once, happy twice
Happy chicken soup with rice
March
In March the wind blows down the door
And spills my soup upon the floor
It laps it up and roars for more
Blowing once, blowing twice
Blowing chicken soup with rice
April
In April I will go away
To far off Spain or old Bombay
And dream about hot soup all day
Oh, my, oh, once, oh, my, oh, twice
Oh, my, oh, chicken soup with rice
May
In May I truly think it best
To be a robin lightly dressed
Concocting soup inside my nest
Mix it once, mix it twice
Mix that chicken soup with rice
June
In June I saw a charming group
Of roses all begin to droop
I pepped them up with chicken soup!
Sprinkle once, sprinkle twice
Sprinkle chicken soup with rice
July
In July I'll take a peep
Into the cool and fishy deep
Where chicken soup is selling cheap
Selling once, selling twice
Selling chicken soup with rice
August
In August it will be so hot
I will become a cooking pot
Cooking soup of course-why not?
Cooking once, cooking twice
Cooking chicken soup with rice
September
In September, for a while
I will ride a crocodile
Down the chicken soup-y Nile
Paddle once, paddle twice
Paddle chicken soup with rice
October
In October I'll be host
To witches, goblins and a ghost
I'll serve them chicken soup on toast
Whoopy once, whoopy twice
Whoopy chicken soup with rice
November
In November's gusty gale I will flop my flippy tail
And spout hot soup-I'll be a whale!
Spouting once, spouting twice
Spouting chicken soup with rice
December
In December I will be
A baubled, bangled Christmas tree
With soup bowls draped all over me
Merry once, merry twice
Merry chicken soup with rice
I told you once, I told you twice
All seasons of the year are nice
For eating chicken soup with rice
Written by: Maurice Sendak
Making lemonaid out of lemons....
There are days when you just have to take all the lemons and make lemonaid! Today was just one of those days!!! We had an appointment with the eye surgeon....Michael had his retina operated on in March hoping that it would improve his eye sight....He also had laser surgery done on his other eye to stop the bleeding behind his eye...The surgeon told us that the surgery was not successful...(of course we already knew that as his eye sight never improved ...although the eye that had the laser surgery has not gotten worse) The surgeon wants to do some more testing on his eye by injecting some dye and seeing if he can tell if there is more bleeding and where it might be coming from or if we have to accept the fact that his once 20/20 vision is now....20/500 in the bad eye and 20/100 in the good eye....which means the bad eye is profoundly low vision...or legally blind and the good eye is mild vision loss...although everything is distorted....
After coming off of yesterday and now today....we sat in the glider swing and sipped lemonaid...we watched the world go by as the sun was shinning and a cool breeze danced across our bare feet....Life should always be like this I thought.....sitting comfortably...dreaming....no troubles....just swinging and sipping lemonaid...
After coming off of yesterday and now today....we sat in the glider swing and sipped lemonaid...we watched the world go by as the sun was shinning and a cool breeze danced across our bare feet....Life should always be like this I thought.....sitting comfortably...dreaming....no troubles....just swinging and sipping lemonaid...
And So it begins...........OR So I thought!
Off we went to the VA today to talk to the Doctor about the next steps that need to be taken to start the paperwork to see if Michael will even qualify for a bone marrow transplant....going through the VA it is a bit different....we have to apply by seeing if he is physically and mentally able to even take the tests to see if he would be a candidate....PHEW! Do you understand that?! Sometimes I don't!
Anyhow, the Doctor had talked to us for some 45 minutes and was setting up dental appointments, stress tests...Physic exam...and an HIV test......WHEN BAM!
Michael got hot under the collar.....and HIV test....What for? He had never used drugs...never used needles....WHAT EVER FOR! They have to rule it out...it is just part of the process.....
Well then....there will be no process....
I sat there in total shock.....why would this drawing of blood make any difference....they draw blood from him every week and check for all sorts of things....hell...they might of already checked for HIV and he wouldn't even know it....
The Doctor said she understood....she did tell him that he only has a window of opportunity here to get the paperwork in and these tests done....then sent off to Washington to have someone look them over to see if we can go to Nashville for the candidate testing....and that once the window closes...we would either have to start all over again....or the biggest threat would be that it would be to late to harvest his stem cells....
We all have said it...."WHATEVER YOU DECIDE...I WILL ABIDE BY"....but do we actually mean it when it comes to situations like this....
I tried calmly to explain to him that it was just something they had to do...it was not personal....
But he would have NO part of it.....I think now....hours later....it is just his way of saying....NO...
No more....I don't want to go through anymore....and for that I guess I can't blame him...but if you don't at least TRY how will you ever know if it would of worked?
I thought his decision would be easier for me to accept....
Anyhow, the Doctor had talked to us for some 45 minutes and was setting up dental appointments, stress tests...Physic exam...and an HIV test......WHEN BAM!
Michael got hot under the collar.....and HIV test....What for? He had never used drugs...never used needles....WHAT EVER FOR! They have to rule it out...it is just part of the process.....
Well then....there will be no process....
I sat there in total shock.....why would this drawing of blood make any difference....they draw blood from him every week and check for all sorts of things....hell...they might of already checked for HIV and he wouldn't even know it....
The Doctor said she understood....she did tell him that he only has a window of opportunity here to get the paperwork in and these tests done....then sent off to Washington to have someone look them over to see if we can go to Nashville for the candidate testing....and that once the window closes...we would either have to start all over again....or the biggest threat would be that it would be to late to harvest his stem cells....
We all have said it...."WHATEVER YOU DECIDE...I WILL ABIDE BY"....but do we actually mean it when it comes to situations like this....
I tried calmly to explain to him that it was just something they had to do...it was not personal....
But he would have NO part of it.....I think now....hours later....it is just his way of saying....NO...
No more....I don't want to go through anymore....and for that I guess I can't blame him...but if you don't at least TRY how will you ever know if it would of worked?
I thought his decision would be easier for me to accept....
Another week down....
I have been actively working on the yard....and happily doing so! Today, the workmen are coming to trim all the bushes and make way for 2 new garden areas....it is very exciting to me! Something about planting gives way to life....allows for the growth and nurturing one must do every day....
I have been UP and DOWN a million times over the past month....a roller coaster ride of sorts...trying to make decisions without enough information...or with to much information....Today, I am listening to my heart....Today....I follow it...weighing decisions brings about confusion and I can never make a decision when I am in the middle of confusion! LOL....who can? So I push aside confusion....I push aside guilt...I push aside right or wrong....I push aside the uncontrollable...and go straight to the core....
I am taking time off from here....from illness....
Sometimes a girl has to do.....what a girl has to do!
The week of the 15th starts a whole new series of tests... So, for now....I will relax just a little!
I have been UP and DOWN a million times over the past month....a roller coaster ride of sorts...trying to make decisions without enough information...or with to much information....Today, I am listening to my heart....Today....I follow it...weighing decisions brings about confusion and I can never make a decision when I am in the middle of confusion! LOL....who can? So I push aside confusion....I push aside guilt...I push aside right or wrong....I push aside the uncontrollable...and go straight to the core....
I am taking time off from here....from illness....
Sometimes a girl has to do.....what a girl has to do!
The week of the 15th starts a whole new series of tests... So, for now....I will relax just a little!
Dirt...
Yesterday I spent the day working in the yard....Literally I spent from 8:30 till 5:00 doing yard work! I got up on my garage roof and painted the cupola that has been there for some 20 years...it was weather beaten and needed a face lift! and I trimmed back the arborvitae that was once 3 feet tall and now has grown up past the roof line of the garage! I have been making way for a new garden with a water feature... I have cleaned out weeds from gardens that have been left unattended for years....I am making an area where a new tree will be planted by Michael and Collin...Why am I telling you about this? Because it came to my attention this morning that working in the dirt gave me a sense of purpose....it gave me the feeling of being in control of something...it made me happy! I guess I was not really aware that I had not been happy....(if you don't count the day that I was told I had to do the IV!) After coming back from Disney (which is the happiest place on earth!) I realized that even though it was a wonderful trip it left me exhausted...but then there was no time to rest....first the PE and then the infection.....So working in the yard allowed me to release a great deal of energy and to see that you have to let things grow in their own time and space....that it is important to have firm roots....and love...and warmth in order to grow properly....I have not been allowing myself that lately....I feel as if I had to be ON....24/7....but what I am aware of this morning (and thank you to those who pointed some of this out to me!) is that I cannot control the outcome of anything that is going on....All I really need to do is provide the love and warmth TODAY in order to establish firm roots....
Thank You...
A moment of peace....
Thank you to all who have written here and off line to bring me support and a personal cheering section....
I have NOT been doing the IV....Michael was given 6 day and 6 night visits with a nurse...and the Doctors determined that he would need 6 more treatments....I could not see the purpose of doing it as long as a nurse was here....So, I stay out of the way...If Michael was going to have to be on meds done by IV long term, certainly I would of learned how to...but not this time....
We went for a follow up check up today...and they want to take the picc line out of his arm as soon as the IV is completed...So we will be going Thursday morning to do that...they do not want one pesky little bacteria that may or may not be still around to have anything to attack....and then we will start to get back on track....
I will have to reschedule all the appointments I had to cancel during his 10 day hospital stay...and the remaining 6 days of IV's....I am going to give both of us a week off to unwind from all of this...to try to settle into something "normal" ...to regroup....and then starting the week of the 15th I hope to have the appointments set up to begin the pre-testing for the bone marrow approval....Hoping that the resting period that his body is in will hold for another couple months...there is no guarentee...it could be longer than that ...it could be shorter than that...I think that is the hardest part of it...the not knowing....some days you just wish someone could give you answers....
Thank you all again....for your support....I couldn't get through this without YOU!
Thank you to all who have written here and off line to bring me support and a personal cheering section....
I have NOT been doing the IV....Michael was given 6 day and 6 night visits with a nurse...and the Doctors determined that he would need 6 more treatments....I could not see the purpose of doing it as long as a nurse was here....So, I stay out of the way...If Michael was going to have to be on meds done by IV long term, certainly I would of learned how to...but not this time....
We went for a follow up check up today...and they want to take the picc line out of his arm as soon as the IV is completed...So we will be going Thursday morning to do that...they do not want one pesky little bacteria that may or may not be still around to have anything to attack....and then we will start to get back on track....
I will have to reschedule all the appointments I had to cancel during his 10 day hospital stay...and the remaining 6 days of IV's....I am going to give both of us a week off to unwind from all of this...to try to settle into something "normal" ...to regroup....and then starting the week of the 15th I hope to have the appointments set up to begin the pre-testing for the bone marrow approval....Hoping that the resting period that his body is in will hold for another couple months...there is no guarentee...it could be longer than that ...it could be shorter than that...I think that is the hardest part of it...the not knowing....some days you just wish someone could give you answers....
Thank you all again....for your support....I couldn't get through this without YOU!
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