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...
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| 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...
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