Just as I was settling in for my nap...the phone rang....I was NOT going to answer it...but seeing as we both have elderly parents...not always the BEST idea...
It was the Doctors office....and we are off to the hospital for TESTS tomorrow....CT scan...EKG...and a few others...So there goes those nice days off! OH WELL....things change around here...can't get to comfy even on the sofa for a nap!! LOL....I am learning to roll with the flow! Not such a bad thing to learn!
Monday...Monday...so good to me!!
It was a crazy day at the Doctors office...a round of blood work took nearly 3 hours...because of the holiday and the office being closed for 4 days (Thurs thru Sunday) the patient load was overwhelming both for the staff and for the patient (and the patience!!)....Lots of people waiting because the seats to receive treatment were all full....I hate to see how many people actually come there....but the good news is....all the blood work looked pretty good...and so they have decided to hold off for the chemo which will be on Friday this week because they are closed on Thursday....there will be the typical work up to the chemo...talking with the Doctor to see where we are at...and then, the long treatment of 5 hours worth of chemo....hopefully the side effects will be less this time....But this Monday, although longer than usual has been good to me....Just need to keep a watchful eye on things as usual....but I am happy to have off, as is Michael....SO GOOD!!
Feeling Awake!!
Doing the Grandma's ROCK dance on Christmas Day...to what else...GRANDMA GOT RUN OVER BY A REINDEER!! LOL....But doesn't this just say it all about the holidays!! The joy...the laughter...the wonderment....Makes you feel very much AWAKE! (can't help but join in the fun!
Those little ones are contagious!!)
A giggle...
Merry Christmas to all....
Press the link and turn on your sound!! (it takes a minute or two to download!)
A little giggle to you....from me...
http://elfyourself.jibjab.com/view/yenm275e6XjHE7t0RWqr
Press the link and turn on your sound!! (it takes a minute or two to download!)
A little giggle to you....from me...
http://elfyourself.jibjab.com/view/yenm275e6XjHE7t0RWqr
Another Day Down...
Today, we went for the blood washing...I actually had a nice time there today...the office was very festive and everyone...even the patients seemed to be in such good spirits with the approaching holiday...there was cookies...and candy...and a YUMMMMMMY fruit arrangement from editable arrangements (the fruit is cut in the shape of stars and dipped in chocolate...there is melon...and strawberries...and pineapple and orange slices...and the smell is so sweet and heavenly) If you have never had one...I swear they are the best thing!!! The staff was at their peak of perfection as usual...and today was a good day!! Hopefully now, all will be well...there are some side effects tonight...but I will monitor them closely.... as I prepare for the holiday here at home with family...I am actually feeling somewhat like a kid tonight as I start to arrange and rearrange the house for the 14 people who will be here for brunch....the wine glasses are washed for mimosa's ...the cocktail glasses in neat rows for the bloody mary's ...and ME....I don't have to drive anywhere that day...So I can have a cocktail or two!! LOL
MERRY CHRISTMAS TO ALL....................
MERRY CHRISTMAS TO ALL....................
Ho-Ho-Ho...
Blood work Monday!
And without a doubt we are traveling once again back to the Doctors' office this afternoon to do the blood washing!! Not only today...but tomorrow also. I had held on to great hope that this would not be happening this week....I had hoped that perhaps the chemo cocktail would of done more work to slow down the progression of this protein....I had hoped that the holiday would be treatment free....But alas....A hearty HO-HO-HO to me!!!
And without a doubt we are traveling once again back to the Doctors' office this afternoon to do the blood washing!! Not only today...but tomorrow also. I had held on to great hope that this would not be happening this week....I had hoped that perhaps the chemo cocktail would of done more work to slow down the progression of this protein....I had hoped that the holiday would be treatment free....But alas....A hearty HO-HO-HO to me!!!
Hugs...
Last night I got to go to a Christmas Open House....and then out to meet a friend ... It was such a NORMAL night in a lot of ways...and yet it was not at all normal because I have not been doing such things for the past months....And today, I am ever so happy from having given myself permission to do that...To see people I have not seen in years...to connect in a healthy way...no illness...no talk of illness...just laughter and HUGS.....
What is it about the power of a hug? I still feel those arms of friends wrapped around me....I still feel the power of the feelings put behind those hugs....Now, some of the people that were at the party DO know what is going on...Some of them have no idea...So some of the hugs held a different meaning than others...but all of them brought powerful messages....Today, I wish that I could reach out and HUG all of you who come here....So if you would please...take your right arm and place it on your left shoulder....take your left arm and place it on your right shoulder...Now....squeeze...tightly
warmly ...and lovingly....CONSIDER YOURSELF HUGGED!
What is it about the power of a hug? I still feel those arms of friends wrapped around me....I still feel the power of the feelings put behind those hugs....Now, some of the people that were at the party DO know what is going on...Some of them have no idea...So some of the hugs held a different meaning than others...but all of them brought powerful messages....Today, I wish that I could reach out and HUG all of you who come here....So if you would please...take your right arm and place it on your left shoulder....take your left arm and place it on your right shoulder...Now....squeeze...tightly
warmly ...and lovingly....CONSIDER YOURSELF HUGGED!
12 to 15 inches!!
It snowed!! Yes...12 to 15 inches...and I have been wondering how the heck am I going to get out of the driveway!! Good thing that Jeep (that I now have a greater appreciation for!) has 4 wheel drive! And I hear the sound of a snow blower....And it sounds as if it is in my driveway!! Sure enough....My nieces' husband came over and is blowing the driveway clear...He moved the cars, as there is NO room in the garage for a car....Heck that is filled with junk from everyone that needs a space to unload things!! (And of course I never say NO!!)...So once again I am reminded in the smallest and the biggest of ways that people are watching out for us...that people are coming over unasked and doing the things that will help us out right now....That I am blessed to have these people in my life....
I talked to a friend today who I have not talked to in a couple years (each of us having our lives filled with the wonder of grandchildren) and each of us taking care of the adversities in our lives...But nothing was different...We talked...we laughed...we told our stories to one another as if over a cup of coffee or a cup of tea....Two girlfriends separated by distance of space...but never distance of heart...
Today...I am counting my blessings....from 1 to 15!
(or from infinity and beyond....as Buzz Lightyear would say!!)
I talked to a friend today who I have not talked to in a couple years (each of us having our lives filled with the wonder of grandchildren) and each of us taking care of the adversities in our lives...But nothing was different...We talked...we laughed...we told our stories to one another as if over a cup of coffee or a cup of tea....Two girlfriends separated by distance of space...but never distance of heart...
Today...I am counting my blessings....from 1 to 15!
(or from infinity and beyond....as Buzz Lightyear would say!!)
tired...
Today, I feel as if I could just sleep the day away...no thoughts...just letting things fall away through the comfort of sleep....But, today, I do not have the luxury...today, I need to hurry up...finish up...and clean up!! Not exactly in that order...but I get the picture!! LOL....Today, is the day of finishing...I had good intentions to have this and that all out of the way by now...Christmas comes the same date every year...but so much has happened that I have said "I'll do it tomorrow" one to many days now!... So today, (if I get off this machine NOW) I can start and maybe...just maybe I will be able to get a well deserved nap today!!
You know what they say....
You know what they say....that S#*%! rolls down hill....Today, was the perfect example of it...I have been trying to find a place to put the hurt from yesterday...trying to recover...We had a meeting with the VA office today to fill out some more paper work and just as we were walking out the door...I was asked ..."DO YOU HAVE THIS OR THAT WITH YOU?" Well...I tell you I lost it...I played the pity card...why is it I have to take care of everything? card....How unfair was that...right in the middle of all this I have to turn bitchy and self-centered??? I was having a bad day still from yesterday...and I took it out...(the S#*%! rolling down hill) on someone who can't remember much of anything anymore!! Did I feel like a total jerk???? YES!!! But it ended up better...I apologized... I made it very clear that I was still carrying around the hurt...and that I did not mean to take it out on him, but I was tired...tired of all the running...tired of being responsible for everything...tired of hurting...tired of dealing with this as the ONLY caregiver without a single break (which is really not true because I do get some time to myself) It is funny (not ha-ha funny mind you) what we do to the people we love...how we react and think that it is ok at times...This was one of those times when I thought I was watching a bad movie as I did it...and I could not walk away....But it ended up better...He understood...he consoled ME...he comforted ME...and for the first time in a very long time I felt loved...and that how I felt mattered...
Good...Bad...
Today, was a good day at the Doctor's office...The blood looked good today...so that means we just might have the week off for good behavior...So many emotions are involved in this process...I try as hard as I can to stay up beat and positive.....Today...I was given a blow by someone I love...A blow that went straight to my heart and ripped it in two...I have no idea what this loved one is thinking...except they are only thinking of them self...but they have taken upon them self to deny us the pleasure of things that we love...they find it to hard to be around us....to hard to be around illness...to hard to bring them self here to visit...To hard to allow the littlest of loves to know our company....My heart is broken today...as I have so many other heart breaking things going on and now at this the Christmas season I have been hurt beyond measure....
I do not understand...how anyone I love so much could hurt me so badly...
I do not understand...how anyone I love so much could hurt me so badly...
The kindness of....
Strangers...and friends...and loved ones....Today, when I got back from a short shopping trip the
driveway was shoveled....I was getting ready to rip Michael a new one...thinking that he had done that! When I asked him if he shoveled...he said NO...someone in a snowsuit with a ski mask on did...My heart lit up...it was the neighbor across the street....a young 20 something man with 2 small children ...whose wife I was talking to the other day as we both retrieved our mail..She asked if Michael was OK as she had seen that he has not been going to work...and I told her a little of what we have been going through....And today, they reached out...from across the street with an act of kindness that made my heart swell....And then there is Terri who is an online friend, who is sending me some books...to help to remind me to take care of my own soul...and all who come here...friends that I know in real life...friends that I have come to know in cyber life...There is my Auntie M (who is really not related to me at all) but who has been my benefactor and life line on many occasions...My son...my daughter...My life long friends who support me with calls and cards....my family who has done EVERYTHING possible to ease my troubles...Special people who surround me with such kindness that I am overwhelmed...Special loves that support and send loving and healing light my way...
Nets that have been cast lovingly to catch me if I fall...Angels in the form of written words and heart felt deeds....Today....I am so aware of the kindness of others... Today...I am aware of the blessings that are in my life...
driveway was shoveled....I was getting ready to rip Michael a new one...thinking that he had done that! When I asked him if he shoveled...he said NO...someone in a snowsuit with a ski mask on did...My heart lit up...it was the neighbor across the street....a young 20 something man with 2 small children ...whose wife I was talking to the other day as we both retrieved our mail..She asked if Michael was OK as she had seen that he has not been going to work...and I told her a little of what we have been going through....And today, they reached out...from across the street with an act of kindness that made my heart swell....And then there is Terri who is an online friend, who is sending me some books...to help to remind me to take care of my own soul...and all who come here...friends that I know in real life...friends that I have come to know in cyber life...There is my Auntie M (who is really not related to me at all) but who has been my benefactor and life line on many occasions...My son...my daughter...My life long friends who support me with calls and cards....my family who has done EVERYTHING possible to ease my troubles...Special people who surround me with such kindness that I am overwhelmed...Special loves that support and send loving and healing light my way...
Nets that have been cast lovingly to catch me if I fall...Angels in the form of written words and heart felt deeds....Today....I am so aware of the kindness of others... Today...I am aware of the blessings that are in my life...
A different sort of day...
Most of the side effects have been tolerable for Michael up until today...This new chemo cocktail that they gave him yesterday (the one that took 5 hours to administer) has knocked him out...It started last night with a fever..sweats...and uncontrollable shaking...This morning the fever was at 102.5...but by noon it had gone down...but he continues to sweat so much that he has had to change his clothing several times now...and he has not been awake for more than a half hour today. My hopes is that his body will get use to this and that this will subside with each continuing treatment...this is so different than the tiredness that we are use to dealing with...
It has come to my attention that anyone who reads this does not really know what it is we are dealing with here...So I am going to try to give it to you the straight talk way....
Michael has a rare form of Non-Hodgkin's lymphoma (only about 1,500 cases per year are diagnosed)...He does not have any tumors but rather the B cell that is the lymphoma deposited itself into his bone marrow and forms a type of cancerous protein that takes over the majority of the space in his bone marrow so that the white cell...red cells and oxygen cells do not have room to be made. Thus, the white, and red cell counts are very low. This type of cancer is of the blood...He is at Stage 4 (out of 4) and has it in almost 75% of his body. There is no cure for this type of cancer and the chemo treatment is to see if perhaps they can slow the process down by stopping the B cell proteins from making themselves so quickly. That is one of the reasons that they do the blood washings...that removes the protein cells from his body for a few days and allows more of the white and red cells to be made temporally. In 1984 he was diagnosed with Non-Hodgkin's lymphoma and had tumors removed in his neck lymph glands...5 years later they felt good enough to say that he was cancer free....but the little devils had deposited themselves in the bone marrow and have slowly been taking over his body for at least 12 to 13 years (or so they believe) This is a slow growing cancer till it takes over (which is where we are at now) and then they label it an aggressive cancer...
Most Doctors do not choose to give a patient these days a death sentence...they believe that attitude has a great deal to do with how you progress with your treatment.(and Michael believes in this also and does not want to know anything accept for what day he needs to come for treatment and what treatment he needs done at the present time)..The main thing for Michael is just trying to control this cancer in some sort of way and so far it continues to rear its ugly head....We hang on....we go on...we try as hard as possible to do business as usual every day...We go one step forward...one step back...and then we step ahead....but we keep focused as much as possible on the day...So today, was not a good day...but tomorrow we hope will be better.
It has come to my attention that anyone who reads this does not really know what it is we are dealing with here...So I am going to try to give it to you the straight talk way....
Michael has a rare form of Non-Hodgkin's lymphoma (only about 1,500 cases per year are diagnosed)...He does not have any tumors but rather the B cell that is the lymphoma deposited itself into his bone marrow and forms a type of cancerous protein that takes over the majority of the space in his bone marrow so that the white cell...red cells and oxygen cells do not have room to be made. Thus, the white, and red cell counts are very low. This type of cancer is of the blood...He is at Stage 4 (out of 4) and has it in almost 75% of his body. There is no cure for this type of cancer and the chemo treatment is to see if perhaps they can slow the process down by stopping the B cell proteins from making themselves so quickly. That is one of the reasons that they do the blood washings...that removes the protein cells from his body for a few days and allows more of the white and red cells to be made temporally. In 1984 he was diagnosed with Non-Hodgkin's lymphoma and had tumors removed in his neck lymph glands...5 years later they felt good enough to say that he was cancer free....but the little devils had deposited themselves in the bone marrow and have slowly been taking over his body for at least 12 to 13 years (or so they believe) This is a slow growing cancer till it takes over (which is where we are at now) and then they label it an aggressive cancer...
Most Doctors do not choose to give a patient these days a death sentence...they believe that attitude has a great deal to do with how you progress with your treatment.(and Michael believes in this also and does not want to know anything accept for what day he needs to come for treatment and what treatment he needs done at the present time)..The main thing for Michael is just trying to control this cancer in some sort of way and so far it continues to rear its ugly head....We hang on....we go on...we try as hard as possible to do business as usual every day...We go one step forward...one step back...and then we step ahead....but we keep focused as much as possible on the day...So today, was not a good day...but tomorrow we hope will be better.
Doing things differently...
Today, we got to the Doctors office and the NEW game plan is to try a different chemo drug...
so now he has 3 different drugs that will be given along with the drugs he takes at home every day...The combination of drugs that they first started him on was not making a difference in the protein levels....they are hoping that this different "cocktail" will give him a better punch!! This will go on for the next 6 months (or so I have been told!) The thing that is NEW and DIFFERENT is that this drug takes 5 hours to be administered!!
So today, I sat with him for a while...and as he started to drift off to sleep...I decided that it was best that I did some things that needed to be done....I will return to the office for the final hour...but for me to sit there for 5 hours seems like just to long of a time...Today....we are BOTH doing things differently....
so now he has 3 different drugs that will be given along with the drugs he takes at home every day...The combination of drugs that they first started him on was not making a difference in the protein levels....they are hoping that this different "cocktail" will give him a better punch!! This will go on for the next 6 months (or so I have been told!) The thing that is NEW and DIFFERENT is that this drug takes 5 hours to be administered!!
So today, I sat with him for a while...and as he started to drift off to sleep...I decided that it was best that I did some things that needed to be done....I will return to the office for the final hour...but for me to sit there for 5 hours seems like just to long of a time...Today....we are BOTH doing things differently....
And the circle keeps turning...
Playing the circle game is often a hard thing to do...but I am keeping my spirits UP!! Although the Doctors had hopes that they would not have to do a blood washing before the Chemo treatment on Thursday that is not to be the case.....Yesterdays blood work showed that the protein levels are to high NOT to do the blood washing....So off to the Doctors office again....today, for the 3 hours...tomorrow...and then Thursday to the VA doctor (have to go there to make sure the benefits stay in place!!)and then chemo after that....The circle keeps turning...and I keep rolling!! I am forced to drive our Jeep in the winter now...and I am not very partial to this vehicle although I am told it is better because of the 4 wheel drive in the winter weather....can't swear by me....but I am off to get those wheels moving this morning....It will be a long week...although I have some happy distractions this week...with the holidays and making things...and sharing things....to distract me...I keep turning in this circle....
Deck the halls....
Busy...Busy...Busy!! It has been the weekend that I decided to decorate for the season...Now as one knows there is no such thing as decorating without cleaning...So the domestic goddess in me came out and I dusted and cleaned and set up the tree...put on the carols and decorated the tree...this year I decorated it in stars...they have words on them...HOPE...JOY....PEACE...WISH
It is a simple tree with an Angel that my sister made on the top and I love it...Almost all decorated in white and silver...So at night it looks very much like a tree that would be outside...This is the first season that I have had to do all of this by myself...I can't say that was much fun...but it did put a different feel into the house...A different warmth...When I do my affirmations in the morning I send out healing and loving thoughts to all that surround me...and with this season upon me I am now thinking that I need to widen those thoughts...spread it out a little more...send it to more and more people....I am not in the position this year to do some of the things that I have done in the past...but I am going to remember to pass it on more this year...the feelings of good tidings...saying hello to more strangers...smiling when I normally just go about doing the errand that I have to do...Wishing people a MERRY CHRISTMAS (which we all know is not politically correct!) allowing myself to open a little more and feel the joy of the season...
It is a simple tree with an Angel that my sister made on the top and I love it...Almost all decorated in white and silver...So at night it looks very much like a tree that would be outside...This is the first season that I have had to do all of this by myself...I can't say that was much fun...but it did put a different feel into the house...A different warmth...When I do my affirmations in the morning I send out healing and loving thoughts to all that surround me...and with this season upon me I am now thinking that I need to widen those thoughts...spread it out a little more...send it to more and more people....I am not in the position this year to do some of the things that I have done in the past...but I am going to remember to pass it on more this year...the feelings of good tidings...saying hello to more strangers...smiling when I normally just go about doing the errand that I have to do...Wishing people a MERRY CHRISTMAS (which we all know is not politically correct!) allowing myself to open a little more and feel the joy of the season...
Feeling lonely...
I was sitting on the sofa, working on a Christmas project when I was overcome with emotions...
Michael was sleeping in this overstuffed chair...Where he is most of the time...and today he had been asleep for most of the day and all of the evening...This feeling that overcame me was powerful enough to make me start to cry...I concentrated on what I was doing...and it washed over me again...Finally as I sat there I realized what it was...I was lonely...I like to be alone...I like the quiet and the solitude of my studio...I like the quiet of the night when I can type and paint alone without the noise that goes on with TV's or radios or cars and trucks going up and down the street...but this feeling was lonely...I have tried tonight to go deep within and find a place to put that feeling...and then I got an E mail...and that loneliness went away....I know I am not alone...I know that I am surrounded by love...well wishes...concern....caring...all wonderful emotions that I have to make sure that I keep close...keep treasured...focused on...So tonight I tuck that loneliness away...tonight I focus on the happiness that others bring to me...how they make me smile...how they lighten my load...and how much I am loved.
Michael was sleeping in this overstuffed chair...Where he is most of the time...and today he had been asleep for most of the day and all of the evening...This feeling that overcame me was powerful enough to make me start to cry...I concentrated on what I was doing...and it washed over me again...Finally as I sat there I realized what it was...I was lonely...I like to be alone...I like the quiet and the solitude of my studio...I like the quiet of the night when I can type and paint alone without the noise that goes on with TV's or radios or cars and trucks going up and down the street...but this feeling was lonely...I have tried tonight to go deep within and find a place to put that feeling...and then I got an E mail...and that loneliness went away....I know I am not alone...I know that I am surrounded by love...well wishes...concern....caring...all wonderful emotions that I have to make sure that I keep close...keep treasured...focused on...So tonight I tuck that loneliness away...tonight I focus on the happiness that others bring to me...how they make me smile...how they lighten my load...and how much I am loved.
Got to love it...
| Don't you just love it when you get a SIGN from the Universe that everything is just as it should be... even when you think it is not!!!.... Sometimes, when you're feeling your lowest, patricia, the real you is summoned.
And you understand, maybe for the first time ever, how grand you are, There is always a bright side. The Universe |
What do I know????
The protein levels are off again...but the Doctors all got together and decided that they did not want to do another blood washing at this time...They have decided that they want to do the chemo treatment and SEE if it does anything to slow the process of making this protein...rather than to wash most of the protein out before the chemo....I am not sure what this all means to me...I keep getting ...THIS IS GOING TO TAKE TIME ....YOU HAVE TO BE PATIENT...
I understand all of this really....but, I am a logical person...and being that way I want to do things in a different way...My thought process tells me to get the bad stuff out before he ends up back in the hospital...But then I am the one that watches the difference the build up makes in not only his energy level but also his personality....As the build up becomes larger he almost becomes nonexistent...He sleeps almost all of the time and has no energy...Although the blood washing itself is draining...and only helps temporarily...that would be my choice...but then I did not go to school to be a specialist or a Doctor....so what do I know???? So I will follow the Doctors advice...I will WATCH...WAIT...AND SEE....while trying to be PATIENT!!
I understand all of this really....but, I am a logical person...and being that way I want to do things in a different way...My thought process tells me to get the bad stuff out before he ends up back in the hospital...But then I am the one that watches the difference the build up makes in not only his energy level but also his personality....As the build up becomes larger he almost becomes nonexistent...He sleeps almost all of the time and has no energy...Although the blood washing itself is draining...and only helps temporarily...that would be my choice...but then I did not go to school to be a specialist or a Doctor....so what do I know???? So I will follow the Doctors advice...I will WATCH...WAIT...AND SEE....while trying to be PATIENT!!
The beginning of another week....
Monday...it use to be when I was working that I disliked Monday because it meant that the weekend was over and it was back to the grind stone...but then when I started doing my art out of my home studio...I never knew when Monday was!! Because I could paint and create to my hearts content...any day of the week...every day of the week....no time card to punch...of course no steady paycheck...but I learned to make due with that...(it is funny when we finally realize how little it is that we need to make us happy!!) But now...Monday means we go for blood work...Monday tells me what the week will be like...Monday is becoming one of my least favorite days!!! Today, we went for blood work and Michael's white count and red count were very low....(I sort of figured that out myself over the weekend when he was sleeping some 16 hours a day) So tomorrow we will go back to the Doctors for a blood transfusion....He has to have a certain type of anti-body in the blood that they use to transfuse him and they have to find it as it is not something that they have at the blood bank and it gets transferred ASAP so that is is there in the morning....We have been lucky that they have been able to find it locally lately....So 2 more hours tomorrow is on the list...They will tell us the protein count tomorrow also...and they were preparing us today for the blood washings...(which again I figured would happen because the protein levels only looked "decent" last Wednesday...and I think the Doctor wanted to let him have the holiday without having to go in the hospital for the washings as the office would of been closed) So, tomorrow will tell me more....but I am seeing a pattern that is emerging....So far these chemo treatments have NOT touched the problem...they are not slowing down the process... nothing is really changing accept that we go to the Doctors now 1...2...3....sometimes 5 times a week....I am not complaining....if it gets him through another day than that is what is keeping him alive....then I will take it!! I will drive there and sit for the hours that the process takes and I will read my good book....I will sketch or draw...stitch or just sit...either way it gives me another day....
Working with the VA...
I have heard so many horror stories about vets and the treatment that they get at the VA clinics, the Doctors and the paperwork...Now, I will admit that there is a lot of paperwork...a lot of checks and balances before things get approved...But I have to say that we have been treated with kindness and caring...we have been treated wonderfully...they went above and beyond what they had to do for us to get Michael into outpatient care...close to home so that we did not have to travel to Buffalo...They have been respectful of this Viet Nam veteran who would of given his life for his country...He is a very proud man...proud that he served, but humble about it...But it was that war that caused this disease he has...This disease is directly related to his exposure to Agent Orange...
The VA has taken good care of him....they have not walked away from this vet...but they cannot give him back his life either...The chemicals that they used over there hurt so many of our own...There are many men who are the same age as Michael who are suffering now....over 40 years later...Now, you could say that they were the lucky ones...they came back...they survived...they had lives that they led for 40 years...families...jobs...and all that is true...but today...I am just mad as hell that he has to go thru this ...all because he was a proud young man who wanted to serve his country....
The VA has taken good care of him....they have not walked away from this vet...but they cannot give him back his life either...The chemicals that they used over there hurt so many of our own...There are many men who are the same age as Michael who are suffering now....over 40 years later...Now, you could say that they were the lucky ones...they came back...they survived...they had lives that they led for 40 years...families...jobs...and all that is true...but today...I am just mad as hell that he has to go thru this ...all because he was a proud young man who wanted to serve his country....
HA! I DID IT AGAIN!!!
So we breezed through the Thanksgiving Day...And it was heavenly...surrounded by my children...my precious little grandson...and my Mother...as we sat around after dinner enjoying a nice glass of wine...my mother asked if we were going to do BLACK FRIDAY...Now, my Mother, is the bionic woman (hip and knee replacements!!) and is slower as she has aged (81 years of age) and my head of course has not been wrapped around the holidays...but when she asked I thought WHY NOT...I mean WHY NOT....I love doing it...not so much for the BIG BARGINS (because I don't believe there are that many!!) not because of the NEED to buy things (as money is tight this year) but because it is FUN...I love talking to all the people standing in line....I like the crowds...I like the fact that most everyone is in a festive mood, otherwise why would they be out at 6:00 in the morning...I like that it made me feel normal...it made me feel good...it made me feel as if all was right with the world!! Sort of like making the dinner yesterday....Why do people complain about the work of it? Why do they think it is such a chore...ME...I love cooking for my family...A big dinner ... A small dinner doesn't matter to me...It is a way that I can show them that I care...It is a way to pour a little love out on the table for them...
So I did it again another year...went out for 5 hours...shopping and laughing and singing carols...
And NOW...I am going to take a much deserved nap...smiling as I do so!! Life is Good!!! (to quote a friend of mine) Life is very good indeed!!
So I did it again another year...went out for 5 hours...shopping and laughing and singing carols...
And NOW...I am going to take a much deserved nap...smiling as I do so!! Life is Good!!! (to quote a friend of mine) Life is very good indeed!!
THANKFUL!
Here we are Thanksgiving Day almost upon us....and I am THANKFUL! Thankful for all the well wishes that I receive here and on the E mail...phone calls and cards. Thankful that I have this holiday to celebrate with my family. Thankful that we do not have to go back to the Doctors till next Monday...Thankful that my son made the trip here from Carolina to be with us. ..Thankful for the joy of laughter and good friends...Thankful for the small things every day that keep me going...Thankful for my art and creative life that feeds my soul...Thankful for LIFE...For all that venture here may you have a bountiful Thanksgiving...and take a moment to be aware of all the things you have that surround you to be Thankful for...My heart felt wishes to us all....
A Day off for GOOD BEHAVIOR!
I am amazed...I am dreaming...PINCH ME!! I have a day off for Good Behavior!! It has been a quiet day here...snow falling gently to cover the ground...soft and fluffy flakes! I actually stayed in my pj's till almost noon!! I am giddy with JOY!! Sleep does change things...I went to bed last night still exhausted from the week...still upset with myself because I let myself get down...and then I woke this morning...And it has been a wonderful day....I painted...I lounged...I did do the mundane grocery shopping (but it was for the Thanksgiving dinner that is planned so that was a happy thing even if the store was crowded!!) I ate chicken wings which I had been craving...I lounged some more..I took a nap...I watched a movie...This was an "I" day...a day off!! This was a day when illness did not seem to enter the picture...This was a beautiful day!!!! And here I sit ready to paint some more... and I am smiling...really smiling...I certainly do like GOOD BEHAVIOR!!
The bad and the good in a day...
Today was a DAY OFF for GOOD BEHAVIOR...or so I thought...I was still lounging in my pj's drinking yet another cup of coffee and painting in my studio when Michael came in and showed me his neck catheter...and there was blood coming out around the incision...The office was called
and they wanted him in right away...this catheter is a central line right to his heart...Once I quickly got dressed we were in the office by 11 AM....Then we were sent to the hospital where he was admitted as an out patient...they removed the catheter and then put a new one in...this is a permanent one...but we must also be very aware of the surrounding area of this one...When I tell you I had a difficult week...today was the one that I broke down on....I felt as if I could not take the responsibility of being the caregiver by myself...that I wanted to give it over...give it over to someone else for the day so I could of stayed in my pj's and drank coffee all day....but that feeling passed...I felt bad for thinking it...for saying some of it...I felt badly for speaking my truth....
But then I came home (after 3:00 ...so that means we were at the Doctors EVERY DAY THIS WEEK FOR AT LEAST 2 or more hours!)... I took a nap and opened up by E mail...and there amongst the mail was a note from a National Magazine saying that the purse my sister and I made and submitted was accepted for publication!! And they wanted a HOW TO MAKE THIS PURSE article ( you can see the tote here)....I have been published many times over the year...but this one HIT me....today...this is what I needed today! This one told me that my art heals me...this purse (or rather tote bag) that my sister and I made from my design was something I made for myself...from my mandalas and my affirmations... Something I can carry with me through the healing process of my soul... Something to remind me that my art heals my heart...my art nourishes my soul...my art holds me together and brings me great joy....I MUST remember to bring that love to myself....from myself....I must remember that I am important...I must remember to know that I have to honor who I am and what I love to do....ART HEALS....and this E mail brought that reminder running back to my soul after the bad of the day...
and they wanted him in right away...this catheter is a central line right to his heart...Once I quickly got dressed we were in the office by 11 AM....Then we were sent to the hospital where he was admitted as an out patient...they removed the catheter and then put a new one in...this is a permanent one...but we must also be very aware of the surrounding area of this one...When I tell you I had a difficult week...today was the one that I broke down on....I felt as if I could not take the responsibility of being the caregiver by myself...that I wanted to give it over...give it over to someone else for the day so I could of stayed in my pj's and drank coffee all day....but that feeling passed...I felt bad for thinking it...for saying some of it...I felt badly for speaking my truth....
But then I came home (after 3:00 ...so that means we were at the Doctors EVERY DAY THIS WEEK FOR AT LEAST 2 or more hours!)... I took a nap and opened up by E mail...and there amongst the mail was a note from a National Magazine saying that the purse my sister and I made and submitted was accepted for publication!! And they wanted a HOW TO MAKE THIS PURSE article ( you can see the tote here)....I have been published many times over the year...but this one HIT me....today...this is what I needed today! This one told me that my art heals me...this purse (or rather tote bag) that my sister and I made from my design was something I made for myself...from my mandalas and my affirmations... Something I can carry with me through the healing process of my soul... Something to remind me that my art heals my heart...my art nourishes my soul...my art holds me together and brings me great joy....I MUST remember to bring that love to myself....from myself....I must remember that I am important...I must remember to know that I have to honor who I am and what I love to do....ART HEALS....and this E mail brought that reminder running back to my soul after the bad of the day...
Yesterdays' scare...
We have been going for the blood washing for the past 3 days...which is a long and very draining process for Michael....Yesterday, we were on the final washing ...they drew blood and discovered that his platelet count was low so they made the decision that he would have to stay for another hour or so to replace the platelets....OK...so this has been done before...Yes...we would be there another couple hours...OK...but then something happened....He turned beet red...his throat closed up...he couldn't breathe...Doctors came in....and I was asked to leave...they gave him a shot of Benadryl and his coloring started to come back...perhaps some sort of allergic reaction...OK...but within minutes his body started shaking...uncontrollably shaking....he was covered in warm blankets, but he kept saying he was not cold....again...Doctors came in....I was asked to leave...He started to get a fever...More blood was taken...cultures...and counts...eventually the shaking stopped after about a half hour...and his fever went back to almost normal....This was the scariest thing I have seen since this whole thing began....Now, I was not in the hospital the night that his blood would not clot and there were 4 Doctors taking turns applying pressure to his tubing in his neck...because I am sure that would of scared me too...Up until yesterday, I have been going along...being the dutiful wife...standing by my man as they say...but yesterday scared the heck out of me....Yesterday brought things into a different light for me...yesterday made it a little more real for me...Yesterday after we got home and I made dinner...when I could finally find a space in the tub to be alone...Yesterday I cried! I have to call the Doctors office this morning to see what the next step will be...the results of the blood work...blood transfusion? ... chemo? or maybe...just maybe....a day off for good behavior!
What day is it anyhow????
It is a good thing that I have a calendar on my wall in front of this machine...because I have noticed that I have NO IDEA what day it is lately...or the date!! My days seem to be labeled with Doctors appointments...and times rather than days of the week and dates....One just seems to flow into the next and before I know it another week has passed. There is a feeling of good and bad with this...
It is good because it means we are passing days...that things are still going along and Michael, although not getting that much better he is still here and we continue to live...
It is bad because we seem to be missing things...not being able to do some of the little things that we use to do together...getting ready for the holidays...going to the toy store to pick out Christmas gifts for the grandson...going to the movies...sharing the responsibilities of the house...He also talks less to me...Sometimes I wonder if I am a ghost here...non existent except to do the mundane things of providing meals and clean clothes....I watch sometimes as he interacts with the people at the clinic who have a connection with him...who are fighting for life...and I watch as a different person comes out...the person with the quick wit and sense of humor...that laughs and puts people at ease...but as soon as we leave there the silence comes back...his eyes close and he withdraws back into his private world of illness by himself. Even though I ask what I can do to make this different he is unaware that he is doing this...almost as if he is blocking me out in some ways...
So today, I will concentrate on the little things for myself that will help me along...I will make a list of the things I need for the Thanksgiving menu...I will make a list of the things I will make for Christmas gifts and I will start that list...I will make a list....and I will check it again...I will make my plans....I will ask questions of him and try to get him involved...I will remain as steady as I can...I will walk into this day filled with sunshine and a dusting of snow with a smile on my face knowing that today...(whatever day it is!! LOL) I did the best I could!
It is good because it means we are passing days...that things are still going along and Michael, although not getting that much better he is still here and we continue to live...
It is bad because we seem to be missing things...not being able to do some of the little things that we use to do together...getting ready for the holidays...going to the toy store to pick out Christmas gifts for the grandson...going to the movies...sharing the responsibilities of the house...He also talks less to me...Sometimes I wonder if I am a ghost here...non existent except to do the mundane things of providing meals and clean clothes....I watch sometimes as he interacts with the people at the clinic who have a connection with him...who are fighting for life...and I watch as a different person comes out...the person with the quick wit and sense of humor...that laughs and puts people at ease...but as soon as we leave there the silence comes back...his eyes close and he withdraws back into his private world of illness by himself. Even though I ask what I can do to make this different he is unaware that he is doing this...almost as if he is blocking me out in some ways...
So today, I will concentrate on the little things for myself that will help me along...I will make a list of the things I need for the Thanksgiving menu...I will make a list of the things I will make for Christmas gifts and I will start that list...I will make a list....and I will check it again...I will make my plans....I will ask questions of him and try to get him involved...I will remain as steady as I can...I will walk into this day filled with sunshine and a dusting of snow with a smile on my face knowing that today...(whatever day it is!! LOL) I did the best I could!
Another Doctor Day continued...
I know that the "blood washing" does not mean much to anyone who reads this...washing the blood?
Here is a brief description below...It takes about 2 to 3 hours depending on how the blood is flowing
and we will be doing this for 3 days in a row...and then perhaps chemo at the end of the week...
GOING TO BE A DOCTOR WEEK!!
When the level of IgM gets very high, the blood becomes very thick (viscous). This high viscosity can cause brain damage (like a stroke) and bleeding problems. When that happens, the level of the abnormal IgM protein needs to be lowered right away. Plasmapheresis lowers the viscosity ("thickness") of the blood using a machine that separates the plasma (the liquid part of the blood) from the blood cells. The liquid part of the blood contains the abnormal protein. The blood cells are mixed with salt solution and new plasma and given back to the patient. The plasma containing the abnormal protein is discarded. Each plasmapheresis treatment takes a few hours.
Here is a brief description below...It takes about 2 to 3 hours depending on how the blood is flowing
and we will be doing this for 3 days in a row...and then perhaps chemo at the end of the week...
GOING TO BE A DOCTOR WEEK!!
| Detailed Guide: | |
| Plasmapheresis | |
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A person having plasmapheresis can lie in bed or sit in a reclining chair. Two IV lines are required -- the blood is removed through one IV, and then is returned to the body through the other IV. Sometimes, a larger catheter is placed in the neck or under the collar bone for the pheresis -- instead of using IV lines in the arms. This type of catheter is called a "central line" and has both IVs built in. Plasmapheresis is not painful, but it can be hard to stay sitting or lying down in the same place for 2 to 3 hours.
Plasmapheresis works quickly to get the IgM level down to a safe level. However, without further treatment to kill the cancer cells (like chemotherapy) the protein level will go back up again. Plasmapheresis is usually given to help the patient until chemotherapy has a chance to work. Sometimes plasmapheresis is used for those whose Waldenstrom macroglobulinemia is not controlled by chemotherapy, biological therapy, or other treatments. When patients have symptoms from elevated IgM, they need to have plasmapheresis right away to prevent complicationsAnother Doctor Day....
Every week we go to the Doctor's office...making the short trip of 15 minutes from our home to the Oncology department of a local hospital...a hospital that is no longer a working hospital, but rather now a place with different departments and labs...this is the hospital where my children were born. the hospital where I went thru my cancer treatments...the hospital where the nuns use to bless each floor every morning at 6:00 with the ringing of bells and every evening at 8:00 with the ringing of the bells and the incense....this is the hospital that was down the street from where I lived as a kid...St. Mary's Hospital....Now, the building still looks the same and the memories of it are still the same for me as I walk the halls, but it has taken on a different function...Today, was suppose to be a chemo day....but after spending 2 hours there this morning having blood work done and talking with the Doctors...they are opting NOT to do the chemo today and instead will do a blood washing....they will remove the build up of BAD protein that is being made within the bone marrow...the protein that forces out all the good things the blood makes...crowds the bone marrow and does not allow for the making of pure and good red and white blood cells...does not allow for enough oxygen to be carried through out the body....This telling us that so far the chemo and the medications are not doing the trick....this telling us to be more patient and more hopeful...this telling us to enjoy each and every day...this telling us that
life is precious and we must be aware of all the good moments. I made a coffee cake to take with me this morning...a little giving back some of the love that is put forth at this office...everyone is smiling and helpful and caring....We are meeting so many wonderful and loving people who are living with cancer...and although it is hard to see how many people are affected by this disease, you can also find a common ground to talk with people about...their children...their grandchildren...sports...and the loving of life....These are perhaps the most hopeful people I have ever met...these people who are living with cancer...these people who enjoy and worship their day just because they have another day ahead of them,even if they are doing their treatment...these people who give me a sense of LIFE...and a sense of LIVING...and a sense of LOVE unlike I have had in a very long time...
life is precious and we must be aware of all the good moments. I made a coffee cake to take with me this morning...a little giving back some of the love that is put forth at this office...everyone is smiling and helpful and caring....We are meeting so many wonderful and loving people who are living with cancer...and although it is hard to see how many people are affected by this disease, you can also find a common ground to talk with people about...their children...their grandchildren...sports...and the loving of life....These are perhaps the most hopeful people I have ever met...these people who are living with cancer...these people who enjoy and worship their day just because they have another day ahead of them,even if they are doing their treatment...these people who give me a sense of LIFE...and a sense of LIVING...and a sense of LOVE unlike I have had in a very long time...
Nesting...
Today, I have been NESTING...rearranging furniture...cleaning...dusting...all the domestic goddess
stuff that I can possible do!! Making lists...checking them twice...getting prepared for the holidays
that are before me....Nesting...making myself comfortable for the long winter ahead of me...Nesting
by changing my surroundings hoping that it will make a difference in how I feel. There is something about cleaning....I do it really BIG like this when I am in a funk...I clean because it takes little thought...and yet a lot of energy....I cook and bake when I am in a very good mood to show love and to share who I am with the ones I care about....Funny...the different things we do to make our self feel better...to make our self not think...to make our hands busy...to keep our hearts safe...to give...to get...to be....I am so aware of them lately....And I have been baking almost every day...and as fast as I bake everything is gone...so I bake again...I have NOT been cleaning as much till today...So the odds have it....I have been in a good mood MORE than a funk!! YIPPEE!!!!! Now, if I can figure out how to get the decorations down from the rafters in the garage I will be one happy girl!!
stuff that I can possible do!! Making lists...checking them twice...getting prepared for the holidays
that are before me....Nesting...making myself comfortable for the long winter ahead of me...Nesting
by changing my surroundings hoping that it will make a difference in how I feel. There is something about cleaning....I do it really BIG like this when I am in a funk...I clean because it takes little thought...and yet a lot of energy....I cook and bake when I am in a very good mood to show love and to share who I am with the ones I care about....Funny...the different things we do to make our self feel better...to make our self not think...to make our hands busy...to keep our hearts safe...to give...to get...to be....I am so aware of them lately....And I have been baking almost every day...and as fast as I bake everything is gone...so I bake again...I have NOT been cleaning as much till today...So the odds have it....I have been in a good mood MORE than a funk!! YIPPEE!!!!! Now, if I can figure out how to get the decorations down from the rafters in the garage I will be one happy girl!!
Something to think about...
| | | |
 | ||
| Here's something to think about. For the next day or two pay attention to the length of the different conversations you have . Make a mental note of how long each conversation lasts and whether it was about something negative or positive. When I did this, I discovered that I had about three times as many conversations about good things as bad things, but the conversations about the bad stuff were at least five times longer! If your family is like many of the families I know, you'll notice that you spend much more time discussing problems than you do discussing the positive experiences in your day. I'm not suggesting that we ignore our problems, but there's no reason that we can't have long conversations about the good stuff, too. In fact, research shows that the more people share the good events of their lives, the closer they feel. By rushing through our conversations about the highs of life, we are inadvertently teaching ourself that the lows of life are more important, more interesting, and more deserving of our attention! |
Reaching out...
I woke this morning with a friend on my mind...a friend that perhaps I have not talked to or seen in the past year....I can't figure out why her name and essence is running around in my head today, but I penned off an e mail to her promptly....Lately I have been very aware not to let these thoughts of reaching out go unnoticed or unattended...I act on them...because who knows what tomorrow may bring...we have TODAY....I am also aware that this is happening to me...my mailbox has suddenly been full of mail from people that I have not heard from in years....who have suddenly, like me, woke up in the morning and had me on their mind so they have reached out to tell me something...to lead me to something...to share something with me...never knowing exactly why but acting upon it too! I am shocked to hear from some of these people, as perhaps it has been almost 27 years since I have heard from them....and there they are out of the clear blue sky on this machine....I am curious as to why now....what message...what lesson...what information or healing are they sending my way....I am paying attention to their words...and sharing mine with them...Today, I am going to make sure that I touch base with the people who come into my thoughts...I am not going to dismiss them so quickly...I am going to believe that there is a reason that the thought has come my way and reach out and tell them that I have been thinking of them! Today, I am going to be more aware of how much love comes my way from the most unexpected people and places...Today, I will be aware to tend to these thoughts and people as they present themselves to me...So to all who venture here...know that you are in my thoughts....and I thank you...for all that are in my thoughts I reach out at this moment to touch you as you have touched me...
Forced....
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!
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...
Side Effects...
One of the side effects of being on high doses of prednisone is that one becomes agitated...one becomes somewhat "mean" and this is a side effect of a drug...NOT a person! HOWEVER...sometimes it is difficult for the caregiver (ME) to distinguish between the two! To NOT take some of the verbal comments personally...To NOT be saddened by some of the things that are said and the tone that they are said in. I know I should not take them personally....I know that it is the DRUGS talking and not Michael...BUT...today, I had to bite the inside of my lip so badly in order not to just slap him upside the head with a verbal come back that my lip was bleeding....and I had to leave the room in tears.....Tears because this is HARD...tears because this is not the man I know...Tears for both of us going through this...sometimes apart...sometimes together....Tomorrow will be a better day I hope, as we start to gradually lower the dose of this medicine....Tomorrow...will be a better day!
Taking Care of Myself...
As this part of my life unfolds...so many people have asked: ARE YOU TAKING CARE OF YOURSELF?...Well...how does one answer that question?...Do I get up every day? Do I remember to brush my teeth...comb my hair...shower ...shave and s#!%?...Do I remember to eat? To sleep? On a good day I do remember to do all of those!!! But do they mean...do I remember to honor myself as a person? Do I give myself time off for good behavior? Do I spend time with myself doing my creative work? To that I must truthfully answer No I do not....I try...some days I actually succeed at it (take yesterday...I actually went to the movies as a gift of 2 hours out of the house with my sister)
Mostly I am finding that I am giving up...giving away...the things that mean the most to me...WHY? Why am I doing that? Because it doesn't seem somehow right that I should have some happiness in my life? That because my good husband can't do the things that he use to love that I should play the martyr and deny myself the things that are important to sustain me? That I should sit on the sofa and watch him as he sleeps? Making sure he is breathing properly...
I do not believe that I am the only person who does this....But WHY??? Why would I give up all the most important things...the things that bring me happiness...the things that feed my soul...
the things that allow me to LIVE LIFE FULLY...Why do I feel guilty for not being sick?
Who does this help??? It certainly does not help me to be strong...to believe...to love better...to hold on tighter....So today, I pull out the drawing pad...I pull out the paint...and I start to do a project that has been in the virtual making....Today....I am taking care of myself...at least for a little while...without ANY GUILT!! (at least that is what I am telling myself at this moment!!)
Mostly I am finding that I am giving up...giving away...the things that mean the most to me...WHY? Why am I doing that? Because it doesn't seem somehow right that I should have some happiness in my life? That because my good husband can't do the things that he use to love that I should play the martyr and deny myself the things that are important to sustain me? That I should sit on the sofa and watch him as he sleeps? Making sure he is breathing properly...
I do not believe that I am the only person who does this....But WHY??? Why would I give up all the most important things...the things that bring me happiness...the things that feed my soul...
the things that allow me to LIVE LIFE FULLY...Why do I feel guilty for not being sick?
Who does this help??? It certainly does not help me to be strong...to believe...to love better...to hold on tighter....So today, I pull out the drawing pad...I pull out the paint...and I start to do a project that has been in the virtual making....Today....I am taking care of myself...at least for a little while...without ANY GUILT!! (at least that is what I am telling myself at this moment!!)
First you cry...
I remember a book being written a long time back with this title...First You Cry by Betty Rollins.
And today....I am thinking about that....But I did not cry first...First I was in SHOCK....and it wasn't till many weeks later that I cried...and NOW...NOW...as I sit patiently trying to read my book...watching as a poison is being administered into the veins through a catheter in my husbands neck...I am MAD....because there is little I can do to help...because there is no cure for this type of cancer and this is more of a band-aide than anything...because as I watch him go through this treatment I also watch my life changing before my eyes...because sometimes it just doesn't seem fair (as selfish as that thought is)... because the road ahead is paved with rocks that I am not sure I can maneuver around (and that makes me feel weak and helpless)...As I sit patiently once again through another day of blood transfusions (he gets these once a week) ...watching as my husband closes his eyes and allows himself to sleep...perhaps to dream that things will turn out with a miracle (they do happen you know he tells me) and once again the 3 hours slowly drifts by and I have continued to read the same lines over and over in my good book....and then...just then...when I think I can't go on another minute doing this...being the caregiver....he opens his eyes and looks over in the direction that I sit (because he can no longer clearly see) he smiles...and he tells me that I am a good wife...that I have been a good partner...that we can get through this...that things will somehow be alright...and then....then I feel the salty tears...And then I cry...softly...silently as I reach for his hand and tell him....Yes....Yes we can! (and I hold on to the hope and miracle that he holds in his heart...and we are one)
And today....I am thinking about that....But I did not cry first...First I was in SHOCK....and it wasn't till many weeks later that I cried...and NOW...NOW...as I sit patiently trying to read my book...watching as a poison is being administered into the veins through a catheter in my husbands neck...I am MAD....because there is little I can do to help...because there is no cure for this type of cancer and this is more of a band-aide than anything...because as I watch him go through this treatment I also watch my life changing before my eyes...because sometimes it just doesn't seem fair (as selfish as that thought is)... because the road ahead is paved with rocks that I am not sure I can maneuver around (and that makes me feel weak and helpless)...As I sit patiently once again through another day of blood transfusions (he gets these once a week) ...watching as my husband closes his eyes and allows himself to sleep...perhaps to dream that things will turn out with a miracle (they do happen you know he tells me) and once again the 3 hours slowly drifts by and I have continued to read the same lines over and over in my good book....and then...just then...when I think I can't go on another minute doing this...being the caregiver....he opens his eyes and looks over in the direction that I sit (because he can no longer clearly see) he smiles...and he tells me that I am a good wife...that I have been a good partner...that we can get through this...that things will somehow be alright...and then....then I feel the salty tears...And then I cry...softly...silently as I reach for his hand and tell him....Yes....Yes we can! (and I hold on to the hope and miracle that he holds in his heart...and we are one)
Funny Face Glasses...
I am sure everyone has seen these glasses....You can pick them up at the dollar store and for years we have had many pairs of these around to cause a grin and a giggle...My husband, Michael is one who LOVES gags...loves to tell the same jokes and get the reactions from people for his sense of humor...and today, is no exception...We have had several conversations on the subject of death and how people respond to it...how people mourn....Now...my good husband LOVES these glasses...and I have been informed that when the end is here...when the gathering at a loving place comes to CELEBRATE HIS LIFE....I am to purchase 100 pairs of these glasses...and 100 whoopee cushions!! And hand them out instead of mass cards...with a note tied to them that is to read....LAUGHTER FUELS THE SOUL....and I WANT TO ALWAYS KEEP YOU LAUGHING!THANK YOU FOR BEING PART OF MY LIFE....
Now, I know there will be some people who think this is NOT acceptable....But for me...for me right now...It certainly made me laugh even amongst the tears....It certainly made me know why it was that I fell in love with this man in the first place...For he certainly has made me laugh more often than not over the past 27 years....And I do celebrate his life today as we surround our selves with the littlest of loves our 3 1/2 year old grandson (almost 4 MOMA!! his name for me!!)
and smile and laugh throughout this day....May you also find something that brings a smile to your face today....For it fuels your soul.
No One Knows...
Living with a terminally ill loved one is a very difficult thing to do on any given day...We consider it a "GOOD" day when your feet hit the ground in the morning....hoping that the rest of the day goes as smoothly as that...
No one knows how long we each have on this earth...Every given moment someone is losing a loved one...The one thing we do have is this moment...right here...right now...to sooth, display, comfort, and show the love that we have within for the people that we love.
Sometimes we harbor things...past things where we felt "wronged" by someone...we put them in a place without letting go...knowing fully well that we are all human...we all make mistakes...we all hurt people without meaning to...Today...I let go of some of my past hurt in order to be more present for the "LIVING" that we are doing....And although this living is not what we are accustomed to....it is still a time to find the love...the humor...the joy of life....
So today, my feet...my husband's feet...hit the ground....Today...I vow to be present...to show my love....today, is a GOOD DAY!
No one knows how long we each have on this earth...Every given moment someone is losing a loved one...The one thing we do have is this moment...right here...right now...to sooth, display, comfort, and show the love that we have within for the people that we love.
Sometimes we harbor things...past things where we felt "wronged" by someone...we put them in a place without letting go...knowing fully well that we are all human...we all make mistakes...we all hurt people without meaning to...Today...I let go of some of my past hurt in order to be more present for the "LIVING" that we are doing....And although this living is not what we are accustomed to....it is still a time to find the love...the humor...the joy of life....
So today, my feet...my husband's feet...hit the ground....Today...I vow to be present...to show my love....today, is a GOOD DAY!
The first of many thoughts...
Today, I start this new blog...
A blog where I will not be posting art...but rather I will be posting rambles from the shadow side of life...About living...about living with dying....This is where my heart will pour forth...this is where my shadow will be exposed...this is where I will cry...where I will laugh...where I will become one with that shadow of life...
Today, I start this new blog...
to open up...to expose...to try to understand...to vent...to scream...to reach out...to accept...to challenge...to be heard...
Today, I start this new blog...
From the shadow side of my life...
A blog where I will not be posting art...but rather I will be posting rambles from the shadow side of life...About living...about living with dying....This is where my heart will pour forth...this is where my shadow will be exposed...this is where I will cry...where I will laugh...where I will become one with that shadow of life...
Today, I start this new blog...
to open up...to expose...to try to understand...to vent...to scream...to reach out...to accept...to challenge...to be heard...
Today, I start this new blog...
From the shadow side of my life...
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