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....
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