Michael's family is coming over this morning....this is a difficult thing as he has kept them in the dark about how sick he is...How can that be?....In 2008 when he first was in ICU they knew he was sick (he has 2 sisters one is 14 years older than him the other is 12 years older) Anyhow, once he started chemo and went into partial remission that is the last thing that he told them...partial remission...doing good he would say when he talked to them on the phone each week....things are great he would say....over the past 2 years he has made excuses not to get together when asked to go out to dinner....So, here we are...toward the end and they are coming over this morning....I tried to gently tell them on the phone when I made these arrangements that he was not doing good and had not been doing good for a while now, but it was his wish not to worry them....and I respected that wish. I went and bought two heart necklaces yesterday that he will give them today as a symbol that he will always be with them....But, this will be a difficult morning for all of us...
BE WELL...
Opening my soul..
It has been an extremely rough couple of weeks...There have been blood transfusions, platelet transfusions,
IV fluid almost every day...There has been a CT scan and a Bone Marrow Biopsy. But, the last few days have
been the hardest for me...Michael has asked me to do a great deal of things for him...the funeral home has been called, Hospice is getting into place, Friends and Family that he wishes to talk to have been called and arrangements have been made for their visits, final wishes have been written down, and he even wanted to dictate his Obituary to me.....He is still hanging on...still manages to smile and crack quite a few really off colored jokes about death...(actually they are quite funny and keep us together) We have lived our lives with humor, especially during the difficult times...life is just to short not to laugh in the face of problems...
The bone marrow biopsy showed that the lymphoma is now in 92% of his bone marrow, which is why the blood is not making all the proper cells...which is why his heart rate is 124 instead of 80...which is why he sleeps 20 hours a day....His body is beginning to shut down...he eats very little and sleeps a lot.
But we are hanging on....and we have TODAY!
BE WELL
IV fluid almost every day...There has been a CT scan and a Bone Marrow Biopsy. But, the last few days have
been the hardest for me...Michael has asked me to do a great deal of things for him...the funeral home has been called, Hospice is getting into place, Friends and Family that he wishes to talk to have been called and arrangements have been made for their visits, final wishes have been written down, and he even wanted to dictate his Obituary to me.....He is still hanging on...still manages to smile and crack quite a few really off colored jokes about death...(actually they are quite funny and keep us together) We have lived our lives with humor, especially during the difficult times...life is just to short not to laugh in the face of problems...
The bone marrow biopsy showed that the lymphoma is now in 92% of his bone marrow, which is why the blood is not making all the proper cells...which is why his heart rate is 124 instead of 80...which is why he sleeps 20 hours a day....His body is beginning to shut down...he eats very little and sleeps a lot.
But we are hanging on....and we have TODAY!
BE WELL
Shut...
Shut Up...Shut Down...Shut Out...
That is what I tend to do when things overwhelm me and fear sets in...
Knowing perfectly well that no one can read what is going on in my mind...no one can guess what it is I need or do not need...Knowing that when I do the 3 Shuts that I isolate myself....But none the less that is what I tend to do when I am overwhelmed and fearful...
That is what I tend to do when things overwhelm me and fear sets in...
Knowing perfectly well that no one can read what is going on in my mind...no one can guess what it is I need or do not need...Knowing that when I do the 3 Shuts that I isolate myself....But none the less that is what I tend to do when I am overwhelmed and fearful...
The chair in the corner...
I made the call early this morning...and into the Doctors office we went....The Nurses had Michael's chair
all ready for him....the chair in the corner...where he can see everyone coming and going...out of the way of all the commotion that goes on there...two blankets and a pillow... Blood was drawn...and his platelet counts were now dangerously low...a low normal is 130....he measured 3...So platelets were ordered and it was going to take a while...which really didn't matter as we were going to be there for 2 to 3 hours anyhow because they were giving him IV fluids...
The Doctor talked to Michael and made it very clear to him that everything that they are doing now is to just keep him alive....He again said that he was willing to continue doing this even if it meant that he came to the office every day of the week to get transfusions and fluid...whatever gave him another day...
I sit....I watch him sleep...I read a book....sometimes I read the same line a dozen or so times....I don't leave him there anymore and go about doing errands...I don't know why that is...but all of a sudden I am not comfortable doing that...So I stay there 2 hours...5 hours...whatever...sitting in a chair ...next to the chair in the corner...getting him water or plumping up the pillow...
It has been a long week (the only day we were not in the office was Wednesday)....we are scheduled to go again tomorrow to hopefully get him through the weekend and then he has an appointment for Monday...they cannot give him chemo unless his counts are up...so hopefully all these booster shots that he is getting will help...
I was talking to a dear heart today...who lost her husband not to long ago...we laughed...we shed a tear or two together...but kindred spirits are we...and I know when I need someone she will be there with her open heart...and arms....healing.
Someone asked me how I did this...(got through each day)...and I said...Well, I could sit around and cry in my beer....but you know, I would rather drink it!
Raise a glass to someone today!
BE WELL
all ready for him....the chair in the corner...where he can see everyone coming and going...out of the way of all the commotion that goes on there...two blankets and a pillow... Blood was drawn...and his platelet counts were now dangerously low...a low normal is 130....he measured 3...So platelets were ordered and it was going to take a while...which really didn't matter as we were going to be there for 2 to 3 hours anyhow because they were giving him IV fluids...
The Doctor talked to Michael and made it very clear to him that everything that they are doing now is to just keep him alive....He again said that he was willing to continue doing this even if it meant that he came to the office every day of the week to get transfusions and fluid...whatever gave him another day...
I sit....I watch him sleep...I read a book....sometimes I read the same line a dozen or so times....I don't leave him there anymore and go about doing errands...I don't know why that is...but all of a sudden I am not comfortable doing that...So I stay there 2 hours...5 hours...whatever...sitting in a chair ...next to the chair in the corner...getting him water or plumping up the pillow...
It has been a long week (the only day we were not in the office was Wednesday)....we are scheduled to go again tomorrow to hopefully get him through the weekend and then he has an appointment for Monday...they cannot give him chemo unless his counts are up...so hopefully all these booster shots that he is getting will help...
I was talking to a dear heart today...who lost her husband not to long ago...we laughed...we shed a tear or two together...but kindred spirits are we...and I know when I need someone she will be there with her open heart...and arms....healing.
Someone asked me how I did this...(got through each day)...and I said...Well, I could sit around and cry in my beer....but you know, I would rather drink it!
Raise a glass to someone today!
BE WELL
REALITY HITS...We don't look like this anymore!
Yesterday we celebrated my Mother's 85th birthday....We had a small gathering of select friends and all most all the family (my brother and family live in Florida and could not make it here)...Anyhow, Michael was feeling well enough to go to the brunch (he usually does better in the morning) We put a game plan in place just encase he had to bow out early....We got dressed and drove with my son to the restaurant....
REALITY HIT....and HIT HARD....
I am so accustomed to being with Michael 24/7 either here at home or at the Doctor's office (among other people who are living in various stages of cancer) that my vision is blinded....and it really wasn't until we were sitting in the restaurant among "healthy" people that I realized how sick he looks now....how thin and fragile he is...how his face appears sunken more now than before...how he walks very slowly and not very steady...and shakes more than I remember....
Maybe this reality hit me because I see him every day....that I look to see if he is sleeping to much or running a fever...or other side effects that I must take notice of...over looking everything else....Maybe it is because I am so close to the situation that I do not want to see what is taking place right before me...Maybe it is because there are not others around for me to compare the difference in him...
Maybe it is because his spirit is still the same...Maybe it is because he laughs a lot...Maybe it is because he continues to make me believe that everything is going to be alright...Maybe it is because he has maintained his sense of humor...
I think more likely it is because LOVE surrounds us....
BE WELL....
Happy Spring...
Wishing all a HAPPY FIRST DAY OF SPRING!!!!!!!!!
We are off and celebrating my mother's 85th birthday (which is really tomorrow)
Michael actually feels good enough to go....back up plan in order encase he needs to leave early!
ENJOY your day and....
BE WELL
We are off and celebrating my mother's 85th birthday (which is really tomorrow)
Michael actually feels good enough to go....back up plan in order encase he needs to leave early!
ENJOY your day and....
BE WELL
Difficult ...
It has been a difficult couple of weeks....Filled with many Doctor appointments due to Michael's very low blood counts....He has had lots of IV fluids because he is so dehydrated and he is very anemic so he is also getting blood transfusions (they have to give the blood bank 24 hours to locate the blood that he requires because it has to contain some kind of anti-body and it is not that common)
Today he was suppose to get his medi-port put in, (which goes under the skin up by the collar bone) but they could not place it in him because his platelet count was so low and they would not risk the fact that he might not be able to clot...so they put in a pick line which goes in his arm...this is a temporary thing but it will save him from having to be stuck with needles every time a procedure needs to be done...his veins are collapsing and rolling so it is becoming very difficult for them to find one to use...He is down to 135 pounds now...and is barely eating...but he maintains his spirit....
Some days....some moments are better for me than others...
He has decided that he will continue on fighting until his body says no more...we are in it for the long haul...
BE WELL...
Today he was suppose to get his medi-port put in, (which goes under the skin up by the collar bone) but they could not place it in him because his platelet count was so low and they would not risk the fact that he might not be able to clot...so they put in a pick line which goes in his arm...this is a temporary thing but it will save him from having to be stuck with needles every time a procedure needs to be done...his veins are collapsing and rolling so it is becoming very difficult for them to find one to use...He is down to 135 pounds now...and is barely eating...but he maintains his spirit....
Some days....some moments are better for me than others...
He has decided that he will continue on fighting until his body says no more...we are in it for the long haul...
BE WELL...
could it be????
The snow has melted here....I saw a Robin....
Could it almost be Spring here in upstate NY in 9 more days?
Michael spent the day in the Oncology office yesterday....I watched the little love (who has eye infections)
It was a long and draining day....Michael needed to have IV fluids again (he is very dehydrated) and he
needed an antibiotic IV....now he is on oral antibiotics....He goes into the hospital on Tuesday for his out patient medi-port to be put in...right after we will go to the Oncology clinic to have blood drawn and see if the counts are good enough for chemo....keeping our fingers crossed that they are....
I am taking an hour to go to the little loves house as he is home from school and Michael's doctor highly suggested that with Michael's very low immune system he not be around a sneezey and runny nose little one...who forgets to wash his hands! So I am the between guy....between when Mommy goes to work and
Daddy can pick him up....We are all working together....and I do not want to be gone to long....
BE WELL....
Could it almost be Spring here in upstate NY in 9 more days?
Michael spent the day in the Oncology office yesterday....I watched the little love (who has eye infections)
It was a long and draining day....Michael needed to have IV fluids again (he is very dehydrated) and he
needed an antibiotic IV....now he is on oral antibiotics....He goes into the hospital on Tuesday for his out patient medi-port to be put in...right after we will go to the Oncology clinic to have blood drawn and see if the counts are good enough for chemo....keeping our fingers crossed that they are....
I am taking an hour to go to the little loves house as he is home from school and Michael's doctor highly suggested that with Michael's very low immune system he not be around a sneezey and runny nose little one...who forgets to wash his hands! So I am the between guy....between when Mommy goes to work and
Daddy can pick him up....We are all working together....and I do not want to be gone to long....
BE WELL....
Simply put....JUST NOT MYSELF!
Ever have one of those days?...weeks?...maybe months? where you just did not feel like yourself! Your true self...I am feeling that way....I feel as if I have a heavy blanket over me and I am buried underneath it....I can go about doing ALL the things that I have to do, but I can't get out from underneath this blanket....And to make matters worse, if someone comes to try to help me take the blanket off....I pull it tighter and tighter around myself.
I know that I am trying to protect myself...I know that things in my house are changing...I know that one should not carry all of this on ones shoulders alone....I know all of this...and yet I am still under the blanket...
At least today, I have now verbalized it....maybe that will help me really peak my head out from underneath...
Have you ever had one of those days?...weeks?...maybe months?....
BE WELL
I know that I am trying to protect myself...I know that things in my house are changing...I know that one should not carry all of this on ones shoulders alone....I know all of this...and yet I am still under the blanket...
At least today, I have now verbalized it....maybe that will help me really peak my head out from underneath...
Have you ever had one of those days?...weeks?...maybe months?....
BE WELL
Monday..
No chemo today...
Michael's blood count is so out of whack that they had to give him IV fluids today as he is so dehydrated.
Tomorrow he will be getting a blood transfusion....and we are making arrangements to get and IV pick
put in him as it is getting more and more difficult to find a vein for him....
It has been a hard morning....
BUT....the sun is out...the birds are singing...and the snow is melting!
BE WELL
Michael's blood count is so out of whack that they had to give him IV fluids today as he is so dehydrated.
Tomorrow he will be getting a blood transfusion....and we are making arrangements to get and IV pick
put in him as it is getting more and more difficult to find a vein for him....
It has been a hard morning....
BUT....the sun is out...the birds are singing...and the snow is melting!
BE WELL
The show must go on!
Poor little love came down with the flu....So he was not able to do his talent....
To make him feel better I told him that when he feels better MOMA will have
a party and invite the whole family and he can do his skit....He seemed to take
that alright...
To make him feel better I told him that when he feels better MOMA will have
a party and invite the whole family and he can do his skit....He seemed to take
that alright...
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