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....
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...
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