So I have been quiet the last few days, as I have been dealing with my overwhelm...my caregiver stress...my anger...As I write this late at night I have calmed down....but I am drained...emotionally spent....
Michael is coming home fromt he hospital tomorrow....and he will have to continue his IV antibiotics for the next 4 weeks....9am and 9pm.....And GUESS who has to learn how to do this sterile procedure on him? GO AHEAD....TAKE A WILD GUESS....
I addressed EVERYONE that I needed to....telling them that I did not want responsibility for this procedure...flushing a pic line that is in his arm...hooking up both an antibiotic bag and a saline bag...getting it to drip at the right speed...and then taking it out all while being sterile....
BIG BUSINESS our health care....things that use to be done at home by registered nurses are no longer found to be necessary....let the caregiver...the family member deal with the loved one ....
I was told..."take a deep breath dear...we teach people to do this every day"..."after all this is your loved one"... WHAT? I feel as if my words don't mean a thing....as if somehow I am less than because I do not wish to take this on....I feel guilty for not wanting to take it on...and yet....ONCE AGAIN....that does not seem to matter to anyone but me....
I have gone along doing everything that I have had to do...paperwork...Dr. appts...laundry...shopping...house disinfecting...yard work..bill paying...everything that has defaulted to me because of this disease....and yet....for whatever reason it is against the rules (and I do not know whose rules they are) to say NO MORE....I can't do anymore....
I wonder tonight why that is....because if I break....if I get sick...if I can't do this....Who will?
Memorial Day....
I hope everyone enjoyed the day today, but that besides the picnic gatherings that you took a moment to reflect on what the day was all about...that perhaps you gave a moment of silence for the ones that have protected this country...be it in the World War I or II...Korea....Viet Nam...the Gulf War...Iraq....that the rights and freedoms we take for granted most days stand strong because of the calling that these men and women had/have to serve our country.....So if you stood and watch a parade as the Veterans marched by with their uniforms and medals of honor I hope you saluted them....or thanked a veteran for serving...bought a poppy that are sold outside of most stores....gave an extra hug to anyone who has a loved one serving in the military today....For this is what the day is really about.....
I took a small flag up to the hospital....and taped it to Michael's bed....I thanked him for serving....
with cupcakes and a hug....AH....Viet Nam....the gift that keeps on giving! But we were thankful today....
I was reminded, gently, by my friend BB that some get worried when I am not here....All is well on the home front.....the antibodics seem to be doing the trick...they have increased his dozage...and will contact the VA tomorrow to see about at home nursing care....If they approve it ....he could be coming home hopefully by Thursday and the IV drip will be administered at home till June 3...at which time they can switch him to oral pills....at least at the moment that is the game plan....
So tomorrow, which is Michael's 60th Birthday....the celebration will have to be there till he can get home and a REAL one will be scheduled....
Happy Memorial Day to all.....
PS: It was determined that he has a staph infection (very common when people have catheters...but don't forget very common for people to get int the hospital...and he was there the week before...got out on a Friday...had the infection by Sunday....FULL blown by Monday....a staph infection can take 24 to 48 hours.....HUMMMMMMMM.....of course we will never know...but I will say...I have never seen so many Doctors buzzing around him before!)
I took a small flag up to the hospital....and taped it to Michael's bed....I thanked him for serving....
with cupcakes and a hug....AH....Viet Nam....the gift that keeps on giving! But we were thankful today....
I was reminded, gently, by my friend BB that some get worried when I am not here....All is well on the home front.....the antibodics seem to be doing the trick...they have increased his dozage...and will contact the VA tomorrow to see about at home nursing care....If they approve it ....he could be coming home hopefully by Thursday and the IV drip will be administered at home till June 3...at which time they can switch him to oral pills....at least at the moment that is the game plan....
So tomorrow, which is Michael's 60th Birthday....the celebration will have to be there till he can get home and a REAL one will be scheduled....
Happy Memorial Day to all.....
PS: It was determined that he has a staph infection (very common when people have catheters...but don't forget very common for people to get int the hospital...and he was there the week before...got out on a Friday...had the infection by Sunday....FULL blown by Monday....a staph infection can take 24 to 48 hours.....HUMMMMMMMM.....of course we will never know...but I will say...I have never seen so many Doctors buzzing around him before!)
Unknown Bacterial blood infection....
Michael is still in the hospital....still taking cultures and still getting his antibiotics from an IV drip...
Seems they cannot figure out exactly what type of bacterial infection he has....He has been handed over to a team of 4 Doctors and the Center for infectious disease control and prevention is involved....They cannot let him out of the hospital till they are able to say what it is that is infecting his blood....they still believe that the bacteria started in his catheter....It is all very confusing now....I am hoping that the cultures have grown the little creature that has invaded his blood so that they can name it and then directly attack it...right now they are using a very heavy duty antibiotic that is suppose to kill anything...but it is still there within him....
I am frustrated....but I know he is in good hands....everyone is taking good care of him....
AND....there are those who are taking very good care of me also....
I will sleep better tonight....
Seems they cannot figure out exactly what type of bacterial infection he has....He has been handed over to a team of 4 Doctors and the Center for infectious disease control and prevention is involved....They cannot let him out of the hospital till they are able to say what it is that is infecting his blood....they still believe that the bacteria started in his catheter....It is all very confusing now....I am hoping that the cultures have grown the little creature that has invaded his blood so that they can name it and then directly attack it...right now they are using a very heavy duty antibiotic that is suppose to kill anything...but it is still there within him....
I am frustrated....but I know he is in good hands....everyone is taking good care of him....
AND....there are those who are taking very good care of me also....
I will sleep better tonight....
Just add it to the list...
Off we went to talk to the VA social worker to try to get the ball rolling for the pre-testing paper work to get the tests needed...to send to Washington....to see if he gets approved to even go to Nashville to see if he is a candidate for the bone marrow transplant....DID YOU FOLLOW THAT?!
Anyhow....that went well and home we came for lunch...and I had projects to do outside in the beautiful 80 degree weather...BUT NO.....the Oncologist called....6 out of the 7 cultures they took yesterday from his blood came back POSITIVE for infection and he had to go in the hospital ASAP to have the catheter taken out (as they believe that may be the source of the infection)...the catheter is placed into his central vein so this is nothing to play around with...according to the Doctor this is a life threatening situation...and he needed to be given antibiotics immediately via an IV drip....Anyhow....he is in the hospital once again....and I am beginning to believe this is just going to be a way of life for me...
Sounds selfish...but I am glad he is there...under 24 hour care....and I can sleep without having one eye open and one ear to listen to the beating of his heart...or his breathing....
Amazing enough....we are keeping our sense of humor about this....I mean, what else can you do?
We believe that the ER should just name the room that we go in their the MOSCA MOTEL!
Everyone got a good giggle out of that!!....Someone asked if I was his "wife" and Michael answered...."I certainly hope so....or else I am having a very good time with someone else's wife"
Again a round of laughter....Have to laugh while we add just one more thing to deal with on the list.....
Anyhow....that went well and home we came for lunch...and I had projects to do outside in the beautiful 80 degree weather...BUT NO.....the Oncologist called....6 out of the 7 cultures they took yesterday from his blood came back POSITIVE for infection and he had to go in the hospital ASAP to have the catheter taken out (as they believe that may be the source of the infection)...the catheter is placed into his central vein so this is nothing to play around with...according to the Doctor this is a life threatening situation...and he needed to be given antibiotics immediately via an IV drip....Anyhow....he is in the hospital once again....and I am beginning to believe this is just going to be a way of life for me...
Sounds selfish...but I am glad he is there...under 24 hour care....and I can sleep without having one eye open and one ear to listen to the beating of his heart...or his breathing....
Amazing enough....we are keeping our sense of humor about this....I mean, what else can you do?
We believe that the ER should just name the room that we go in their the MOSCA MOTEL!
Everyone got a good giggle out of that!!....Someone asked if I was his "wife" and Michael answered...."I certainly hope so....or else I am having a very good time with someone else's wife"
Again a round of laughter....Have to laugh while we add just one more thing to deal with on the list.....
And the Beat goes on....
It has been a rough couple of days....trying to regulate Michael's blood with the shots and the coumadin....Last night he was so cold that his teeth were chattering....he had on 2 flannel shirts and winter jogging pants...socks...and wrapped in a heavy blanket and he still could not get warm...he woke up this morning the same way...but now with pains in his legs...a temp of 101.8...light headed...So I called the Doctors...ALL OF THEM!! (we are dealing with 3 now) and it was decided that he should go to the Oncologist Office....We went at 10:00..(arriving home at 3:30)..after a series of tests including a chest x-ray it was determined that he had an infection somewhere...just no one knew where...So they decided to give him some antibodics through his catheter....upon doing this they have now decided to take the catheter OUT....as that may be where the infection is coming from and this line goes directly into his heart.....So, Thursday we will have it removed....
I am hoping that he is feeling better tomorrow as we have a meeting with the VA in the morning...Thursday morning is the removal of the catheter...and Friday morning is the blood work. He will be going 2 times a week for the blood work for the regulation of the shots and the Coumadin....
When we first started this journey (which now seems like a life time ago) they had told me that there was NO cure for this cancer....but they also told me that the cancer would not kill him....something else would....I guess in some ways I did not grasp that....
I do now...
I am hoping that he is feeling better tomorrow as we have a meeting with the VA in the morning...Thursday morning is the removal of the catheter...and Friday morning is the blood work. He will be going 2 times a week for the blood work for the regulation of the shots and the Coumadin....
When we first started this journey (which now seems like a life time ago) they had told me that there was NO cure for this cancer....but they also told me that the cancer would not kill him....something else would....I guess in some ways I did not grasp that....
I do now...
Armed and Ready!....or That was Easy!
THIS POST WAS FROM YESTERDAY....SUNDAY!
I took a little free time today to go see the X-Men movie...just for pure entertainment! I am still a big fan of comic hero movies....So I totally enjoy it...
Then...I came back and did my home work!! I am armed and ready for the VA...Printing out some 30 pages of information I found on the net....All showing a direct link to blood clots...from cancer...from catheters...from Waldenstrom....I am very fond of this one:
At highest risk are patients with blood cancer who have a 28 times higher risk than those without cancer.
This is one little girl who will not sit on the side lines and believe everything they tell me!! They told me in the beginning that they did not cover Waldenstrom too...BUT I found the information that directly linked it to Agent Orange on their own website!
For some reason I could not log this last night....but I am going to try again....
Went to the VA today....
AND BELIEVE IT OR NOT....everything went smoothly....and I was told...DON'T WORRY ABOUT IT...IT WILL BE TAKEN CARE OF.....and they didn't even want my homework!! LOL
Now where is my EASY button!! LOL
I took a little free time today to go see the X-Men movie...just for pure entertainment! I am still a big fan of comic hero movies....So I totally enjoy it...
Then...I came back and did my home work!! I am armed and ready for the VA...Printing out some 30 pages of information I found on the net....All showing a direct link to blood clots...from cancer...from catheters...from Waldenstrom....I am very fond of this one:
At highest risk are patients with blood cancer who have a 28 times higher risk than those without cancer.
This is one little girl who will not sit on the side lines and believe everything they tell me!! They told me in the beginning that they did not cover Waldenstrom too...BUT I found the information that directly linked it to Agent Orange on their own website!
For some reason I could not log this last night....but I am going to try again....
Went to the VA today....
AND BELIEVE IT OR NOT....everything went smoothly....and I was told...DON'T WORRY ABOUT IT...IT WILL BE TAKEN CARE OF.....and they didn't even want my homework!! LOL
Now where is my EASY button!! LOL
Words of Wisdom....
maybe it's time
maybe it's time to take care of yourself.
maybe it's time to scream out loud
that you don't have the answers
and you just plain can't figure out what
it's all about...
maybe it's time to stop doin' the half ride.
maybe it's time to step into it all.
to weep your guts out.
to hurt all the way to your core.
to allow the hurt to be there.
maybe it's time to embrace the love
and believe in it even tho it's not always perfect...
but it is always right.
maybe it's time to shout out to your depths
that you do matter
and you will do all in your power to live healthy.
maybe it's time to stop just getting thru,
just surviving.
maybe it's time to grab the gift you've been given
and celebrate every single piece of it...
including the pain that brought you here.
maybe it's time.
....TERRI ST.CLOUD
Truly a mantra today....Visit my friend, Terri, an amazing and loving soul filled with wisdom at: http://www.bonesighart.com
Wish her a HAPPY BIRTHDAY!!!
maybe it's time to take care of yourself.
maybe it's time to scream out loud
that you don't have the answers
and you just plain can't figure out what
it's all about...
maybe it's time to stop doin' the half ride.
maybe it's time to step into it all.
to weep your guts out.
to hurt all the way to your core.
to allow the hurt to be there.
maybe it's time to embrace the love
and believe in it even tho it's not always perfect...
but it is always right.
maybe it's time to shout out to your depths
that you do matter
and you will do all in your power to live healthy.
maybe it's time to stop just getting thru,
just surviving.
maybe it's time to grab the gift you've been given
and celebrate every single piece of it...
including the pain that brought you here.
maybe it's time.
....TERRI ST.CLOUD
Truly a mantra today....Visit my friend, Terri, an amazing and loving soul filled with wisdom at: http://www.bonesighart.com
Wish her a HAPPY BIRTHDAY!!!
Continuing Saga...
Went to the hospital today....to learn how to give the Lovenox shot to Michael in his belly....now, I was not comfortable doing this...but quite frankly was belittled into it by all the Doctors telling me how easy it was.....Well...it was easy...but still uncomfortable....After all I am the girl who was asked to consider another career choice when I was in nursing school as I had a hard time giving a shot to a comatose patient! (the truth, I swear....and I did choose another profession!) Anyhow, FINE ...I can give a shot now...under the understanding that he could only go home if someone was able to do this...FAST FORWARD....we were told he could not go home till Monday because the VA could not get the Coumadin that he needed till Monday....OK....FAST FORWARD....VA notified the hospital that this hospital stay would NOT be covered by them as it was NOT directly related to his cancer....FAST FORWARD....The hospital decides they need to release him as they will not be getting paid....So after 6 hours of going back and forth...they released him....gave him 3 days script for the Coumadin....I got 3 days of Lovenox from his Oncologist....and we will go to the VA on Monday to try to straighten this all out....
Here is what I read tonight about Bilateral Pulmonary Embolism...
Pulmonary embolism (PE) is an extremely common and highly lethal condition that is a leading cause of death in all age groups. A good clinician actively seeks the diagnosis as soon as any suspicion of PE whatsoever is warranted, because prompt diagnosis and treatment can dramatically reduce the mortality rate and morbidity of the disease. Unfortunately, the diagnosis is missed more often than it is made, because PE often causes only vague and nonspecific symptoms.
Plus....
* PE is the third most common cause of death in the US, with at least 650,000 cases occurring annually. It is the first or second most common cause of unexpected death in most age groups. The highest incidence of recognized PE occurs in hospitalized patients. Autopsy results show that as many as 60% of patients dying in the hospital have had a PE, but the diagnosis has been missed in about 70% of the cases. Surgical patients have long been recognized to be at special risk for DVT and PE, but the problem is not confined to surgical patients. Prospective studies show that in the absence of prophylaxis acute DVT may be demonstrated in any of the following:
o General medical patients placed at bed rest for a week (10-13%)
o Patients in medical intensive care units (29-33%)
Last September when Michael was in the hospital he was in Intensive Care for 5 days.....Now, no one can tell us when he got this...how long he has had it....as it could of been in his leg and traveled up to his lungs....
I am mad as heck!! What do they mean they will not cover the medical expense of this....
Dealing with the Government and RED TAPE...is not often an easy thing to do....but this one I will FIGHT! I am going to get a copy of the hospital bill on Monday....then take it to the Oncologist Office BEFORE I go to VA....I will have her write a letter saying that the hospitalization was a direct result of HER telling us to go as part of his treatment for the cancer...
I will submit it....I will fight it....I am mad as heck!!
So now we have to see what will be done about this U-TURN....this new development...
Remind me next time to take a longer vacation!!
Here is what I read tonight about Bilateral Pulmonary Embolism...
Pulmonary embolism (PE) is an extremely common and highly lethal condition that is a leading cause of death in all age groups. A good clinician actively seeks the diagnosis as soon as any suspicion of PE whatsoever is warranted, because prompt diagnosis and treatment can dramatically reduce the mortality rate and morbidity of the disease. Unfortunately, the diagnosis is missed more often than it is made, because PE often causes only vague and nonspecific symptoms.
Plus....
* PE is the third most common cause of death in the US, with at least 650,000 cases occurring annually. It is the first or second most common cause of unexpected death in most age groups. The highest incidence of recognized PE occurs in hospitalized patients. Autopsy results show that as many as 60% of patients dying in the hospital have had a PE, but the diagnosis has been missed in about 70% of the cases. Surgical patients have long been recognized to be at special risk for DVT and PE, but the problem is not confined to surgical patients. Prospective studies show that in the absence of prophylaxis acute DVT may be demonstrated in any of the following:
o General medical patients placed at bed rest for a week (10-13%)
o Patients in medical intensive care units (29-33%)
Last September when Michael was in the hospital he was in Intensive Care for 5 days.....Now, no one can tell us when he got this...how long he has had it....as it could of been in his leg and traveled up to his lungs....
I am mad as heck!! What do they mean they will not cover the medical expense of this....
Dealing with the Government and RED TAPE...is not often an easy thing to do....but this one I will FIGHT! I am going to get a copy of the hospital bill on Monday....then take it to the Oncologist Office BEFORE I go to VA....I will have her write a letter saying that the hospitalization was a direct result of HER telling us to go as part of his treatment for the cancer...
I will submit it....I will fight it....I am mad as heck!!
So now we have to see what will be done about this U-TURN....this new development...
Remind me next time to take a longer vacation!!
Emergency Room ...
Yesterday was a full day! And me still tired from the vacation...not yet back into the swing of real life! Michael had his CT and PET scans yesterday...a 3 hour procedure at the imaging lab...
The rain stopped and the sun came out and I was starting to relax...and then the call came...
GOOD NEWS....BAD NEWS....
The scans looked pretty good.....HOWEVER....Michael needed to go to the emergency room because several blood clots were seen on the scan in his lower lobes of his pulmonary artery...Do we eat the supper that was in the oven?????? The Doctor said to go ahead and eat...she would call the emergency room and let them know we were coming and what she wanted to do....which was to get him admitted to the hospital...and start him with a shot and then a series of shots for the next couple days (some sort of blood thinner to dissolve the blood clots) before he could be given pills to do that.....OK...sounded easy .....RIGHT!
We arrived at the Emergency room and we were given a buzzer (like the type you get when you order a pizza!) We gave all his data...this was 6:30....and actually thinking we were fairly lucky because we got into a room within an hour.....FAST FORWARD.....
gave the data again to nurse #1....to nurse #2.....to nurse #3...(Even went through shift changes and gave the data once again along with the 6 series of blood pressure..temperature...oxygen level...) FINALLY being seen by a Doctor at 1:00 in the morning!!! And finally being admitted at 1:30 in the morning....Still no shot...
Am I complaining???????????
I would not have complained...accept that a nurse somewhere around nurse #4...told us, after sitting there in the room for 2 1/2 hours, that the Emergency Room was not like the ones you see on TV where you get taken care of as soon as you walk in the door (did she think she needed to tell us that because Grey's Anatomy was on the TV?!?) that it is first come first serve and that we couldn't have that much of an emergency if the Doctor did NOT meet us at the Emergency Room...And that someone would be with us probably within the hour (to which I promptly looked at her and said... We are very well aware of the fact that this is a REAL Emergency Room, not a sitcom and that perhaps it was best that we did not go any farther with this conversation!)...Well...FAST FORWARD again.....2 hours later someone did see us....
What seemed to be so simple ended up being a long ordeal...BUT he is in the hospital now...and being taken care of....I just had a power nap from 2 AM to 6 AM....feeling drained....feeling tired...I will get ready soon to go back to the hospital to see how much more we might know now...
Just a little venting!!
The rain stopped and the sun came out and I was starting to relax...and then the call came...
GOOD NEWS....BAD NEWS....
The scans looked pretty good.....HOWEVER....Michael needed to go to the emergency room because several blood clots were seen on the scan in his lower lobes of his pulmonary artery...Do we eat the supper that was in the oven?????? The Doctor said to go ahead and eat...she would call the emergency room and let them know we were coming and what she wanted to do....which was to get him admitted to the hospital...and start him with a shot and then a series of shots for the next couple days (some sort of blood thinner to dissolve the blood clots) before he could be given pills to do that.....OK...sounded easy .....RIGHT!
We arrived at the Emergency room and we were given a buzzer (like the type you get when you order a pizza!) We gave all his data...this was 6:30....and actually thinking we were fairly lucky because we got into a room within an hour.....FAST FORWARD.....
gave the data again to nurse #1....to nurse #2.....to nurse #3...(Even went through shift changes and gave the data once again along with the 6 series of blood pressure..temperature...oxygen level...) FINALLY being seen by a Doctor at 1:00 in the morning!!! And finally being admitted at 1:30 in the morning....Still no shot...
Am I complaining???????????
I would not have complained...accept that a nurse somewhere around nurse #4...told us, after sitting there in the room for 2 1/2 hours, that the Emergency Room was not like the ones you see on TV where you get taken care of as soon as you walk in the door (did she think she needed to tell us that because Grey's Anatomy was on the TV?!?) that it is first come first serve and that we couldn't have that much of an emergency if the Doctor did NOT meet us at the Emergency Room...And that someone would be with us probably within the hour (to which I promptly looked at her and said... We are very well aware of the fact that this is a REAL Emergency Room, not a sitcom and that perhaps it was best that we did not go any farther with this conversation!)...Well...FAST FORWARD again.....2 hours later someone did see us....
What seemed to be so simple ended up being a long ordeal...BUT he is in the hospital now...and being taken care of....I just had a power nap from 2 AM to 6 AM....feeling drained....feeling tired...I will get ready soon to go back to the hospital to see how much more we might know now...
Just a little venting!!
U-TURN....
First let me say, that Disney was wonderful!!! I will post pictures soon! The boys did really well!!
Collin, my 4 year old grandson, was in awe of the electrical parade...the come to life characters...the
small world ride (which of course he could sing upon coming out of the ride...and did sing the entire time we were there!) the pool...the hotel...the stores with all the merchandise (over priced!) He was excellent....Michael insisted on doing more than he should have...but naps were in order...and we had the opportunity to meet my brother for dinner which was a great time!
And then upon arriving home I found 385 E mail messages (most which could be deleted! LOL) but some that needed to be answered and many phone messages....One or two very important ones. So my first day back from this vacation (which by the way I need a vacation after this one!! LOL) was spent trying to play catch up with everything here! The grocery shopping...the visiting nurse... and returning calls...one which was from the VA.....and here comes the U-TURN!
We were given permission to go to the Wilmont Center for the bone marrow transplant consultation...which is true...HOWEVER...because of the expense of such a procedure, the VA will NOT pay for that to be done here in Rochester...It was explained that all the procedures would need to be done at the Nashville VA Hospital in order for the VA to cover the expenses...
Wilmont would be personal Health Care Insurance or out of pocket....NOW...not to be greedy or anything...but this disease is a direct result of Agent Orange...and the VA needs to be responsible for this....SO ....U-TURN....Starting next week we have 90 days to get all pretesting done (but because of his staging needs to be done ASAP)...and paperwork done (a VA social worker will be seen next week to help ME get the paper work in order) in order to get it turned into Washington to even get approval to go to Nashville for the real testing to see if he is a candidate!! OH MY who knows how long that will take!!!( A direct decision will be made by someone sitting at a desk who does not know us!)
Now, this has thrown a bit of a spin on things.....and my good husband, is somewhat deflated....he was sitting on the edge of the fence about this procedure before finding this out...but now...he has fallen off the fence....I convinced him yesterday (which was probably easier to do coming off the Disney trip with the grandson!) to at least go and talk to the social worker...to at least go and do the pretesting...to gather information....All that starts next week!
This morning.....he started his BUCKET LIST....Disney of course with Collin was at the top and he checked that one off...we will begin to cross them off one at a time as we travel down the U-TURN path now....
My thoughts are to many right now to even write....but it has become very apparent to me over this week that it is SO IMPORTANT to DO the things that you want to do...to NOT put off till tomorrow...to NOT wait for the right time to do those things (as you never know when or what U-Turn might be in your path!)
Collin, my 4 year old grandson, was in awe of the electrical parade...the come to life characters...the
small world ride (which of course he could sing upon coming out of the ride...and did sing the entire time we were there!) the pool...the hotel...the stores with all the merchandise (over priced!) He was excellent....Michael insisted on doing more than he should have...but naps were in order...and we had the opportunity to meet my brother for dinner which was a great time!
And then upon arriving home I found 385 E mail messages (most which could be deleted! LOL) but some that needed to be answered and many phone messages....One or two very important ones. So my first day back from this vacation (which by the way I need a vacation after this one!! LOL) was spent trying to play catch up with everything here! The grocery shopping...the visiting nurse... and returning calls...one which was from the VA.....and here comes the U-TURN!
We were given permission to go to the Wilmont Center for the bone marrow transplant consultation...which is true...HOWEVER...because of the expense of such a procedure, the VA will NOT pay for that to be done here in Rochester...It was explained that all the procedures would need to be done at the Nashville VA Hospital in order for the VA to cover the expenses...
Wilmont would be personal Health Care Insurance or out of pocket....NOW...not to be greedy or anything...but this disease is a direct result of Agent Orange...and the VA needs to be responsible for this....SO ....U-TURN....Starting next week we have 90 days to get all pretesting done (but because of his staging needs to be done ASAP)...and paperwork done (a VA social worker will be seen next week to help ME get the paper work in order) in order to get it turned into Washington to even get approval to go to Nashville for the real testing to see if he is a candidate!! OH MY who knows how long that will take!!!( A direct decision will be made by someone sitting at a desk who does not know us!)
Now, this has thrown a bit of a spin on things.....and my good husband, is somewhat deflated....he was sitting on the edge of the fence about this procedure before finding this out...but now...he has fallen off the fence....I convinced him yesterday (which was probably easier to do coming off the Disney trip with the grandson!) to at least go and talk to the social worker...to at least go and do the pretesting...to gather information....All that starts next week!
This morning.....he started his BUCKET LIST....Disney of course with Collin was at the top and he checked that one off...we will begin to cross them off one at a time as we travel down the U-TURN path now....
My thoughts are to many right now to even write....but it has become very apparent to me over this week that it is SO IMPORTANT to DO the things that you want to do...to NOT put off till tomorrow...to NOT wait for the right time to do those things (as you never know when or what U-Turn might be in your path!)
It's finally here....
Leaving on Tuesday for Disney!!! Wish me luck!
I will be back on line in 10 days!!
I will be back on line in 10 days!!
Smile...
Perhaps some or all of you are aware that I do a daily mandala affirmation....This one here appeared to me on Wednesday...with the message to SMILE attached to it....This morning as I reflected on my week I also opened up the book that Tina sent me...Healing Words by Caren Goldman...and what page did it open to....SMILE!! So the message is loud and clear!"SMILES REACH THE HARD-TO-REACH PLACES." was one of the quotes on this page in the book.....HOW TRUE THAT IS...No matter what is going on in our live there is something that can cause a smile...that you cannot stand in the muck without becoming part of the muck...that you can scream and rant and rave and beat yourself up for what is going on that is negative or you can find something that allows you to smile and feel and live life to the fullest extent that you are able....Harder to do on some days than others...but STILL NOT IMPOSSIBLE! Smiles allow you to be aware to laugh...to find joy in the every day things of life...a smile brings a gentleness to your heart even if it is only a small smile...a smile allows for that moment all the negative to slip away...it calms you and brings back a normalcy that was not there just a moment ago...
So as I begin this new day....I let go of the beating myself up....I let go of the illness that surrounds me...I let go of the things that I think should be...would be...could be....and I find the pleasure of the moment....and I SMILE...
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