Latest..
This latest round of chemo is now completed....The results of course are never quite known...There will be several more rounds of this drug...4 days of chemo with 3 weeks off in between....blood work will have to be done every week to make sure the levels are good...The side effects were minimal which is great...he has been very lucky with side effects...never getting very many from any of the drugs he has had...
This round of chemo is what they call a "salvage" chemo....which means that he has not had improvement with the chemo that generally helps the type of cancer that he has....and our Doctors had hoped that his PR (partial remission) would of lasted much longer than the 6 months that we had without to many signs of progression.
Now we start making way for Halloween and then Thanksgiving....looking forward...enjoying each day as it comes our way...
As for me....well...I am trying to work on Christmas gift giving projects...There are 16 staff members in the office that I am making things for...and then there are the Doctors (which I don't know what I will do for them yet)...YES...it does seem to early to think about things like this, but when you are making things you just sort of have to!! LOL
BE WELL..
This round of chemo is what they call a "salvage" chemo....which means that he has not had improvement with the chemo that generally helps the type of cancer that he has....and our Doctors had hoped that his PR (partial remission) would of lasted much longer than the 6 months that we had without to many signs of progression.
Now we start making way for Halloween and then Thanksgiving....looking forward...enjoying each day as it comes our way...
As for me....well...I am trying to work on Christmas gift giving projects...There are 16 staff members in the office that I am making things for...and then there are the Doctors (which I don't know what I will do for them yet)...YES...it does seem to early to think about things like this, but when you are making things you just sort of have to!! LOL
BE WELL..
She always speaks to ME....
a depth
“ there was a depth inside her
that went beyond any words...
beyond any boundaries...
beyond anything she ever knew.
carrying this inside her always,
but rarely exploring there,
she thought it was time for a visit. ”
~terri st. cloud
Check out Stars inside her - Journaling with Bone Sighs
My journaling lately has dropped and rolled down the stairs....I guess I'll have to let Teri help me reconnect...
I hope she speaks to you too!
BE WELL...
“ there was a depth inside her
that went beyond any words...
beyond any boundaries...
beyond anything she ever knew.
carrying this inside her always,
but rarely exploring there,
she thought it was time for a visit. ”
~terri st. cloud
Check out Stars inside her - Journaling with Bone Sighs
My journaling lately has dropped and rolled down the stairs....I guess I'll have to let Teri help me reconnect...
I hope she speaks to you too!
BE WELL...
Everything...
went well yesterday with the blood washing....it was decided that a new type of chemo will be started today and the second blood washing will be eliminated....So off to the office this morning...hoping that perhaps this new
chemo will keep these counts down for a longer period of time...
BE WELL...
chemo will keep these counts down for a longer period of time...
BE WELL...
once again...
Over the weekend another tumor appeared by Michaels collar bone...So the Doc was called this morning
and off to the office we went....blood work was done...after an exam...and the results showed that the bad
protein level was off the chart....So he will be getting Plasmaphoresis done both Wednesday and Friday...
(which is a process done by the wonderful people at the Red Cross right in our Doctors office where
they hook you up to this big machine with a tube in both arms...one tube draws blood out and puts it through
the machine which washes the blood and the other tube puts the blood back in....of course that is the short version!) It is the most amazing process, but draining...butit usually brings about good results, although they are very short lived....They talked to us for over an hour today about starting him on a completely different cocktail of chemo...as it has become very apparent that the one he is on is not slowing the growth of this cancer this time around....
So tomorrow we will do what errands we have to do...and then we will lay low while this process takes place.
Michael is in good spirits...although is quite upset that he continues to lose weight weekly...He has gone from
169 pounds to 150 in the last several months....but this goes along with this cancer...he eats...he just doesn't gain weight...and although he thinks he is eating a lot...he really isn't....I just don't tell him that!
We continue on...we laugh...we joke with each other and with the Doc and staff...we appear to be ok....somethimes I wonder what lurks underneath...I put most of it aside....sometimes breaking down here and there...but most of the time just going through everyday the best that I can without thinking to much about it....For now...that seems to work...
BE WELL...
FYI: information
and off to the office we went....blood work was done...after an exam...and the results showed that the bad
protein level was off the chart....So he will be getting Plasmaphoresis done both Wednesday and Friday...
(which is a process done by the wonderful people at the Red Cross right in our Doctors office where
they hook you up to this big machine with a tube in both arms...one tube draws blood out and puts it through
the machine which washes the blood and the other tube puts the blood back in....of course that is the short version!) It is the most amazing process, but draining...butit usually brings about good results, although they are very short lived....They talked to us for over an hour today about starting him on a completely different cocktail of chemo...as it has become very apparent that the one he is on is not slowing the growth of this cancer this time around....
So tomorrow we will do what errands we have to do...and then we will lay low while this process takes place.
Michael is in good spirits...although is quite upset that he continues to lose weight weekly...He has gone from
169 pounds to 150 in the last several months....but this goes along with this cancer...he eats...he just doesn't gain weight...and although he thinks he is eating a lot...he really isn't....I just don't tell him that!
We continue on...we laugh...we joke with each other and with the Doc and staff...we appear to be ok....somethimes I wonder what lurks underneath...I put most of it aside....sometimes breaking down here and there...but most of the time just going through everyday the best that I can without thinking to much about it....For now...that seems to work...
BE WELL...
FYI: information
Plasmapheresis
When the level of IgM gets very high, the blood becomes very thick (viscous). This is called hyperviscosity syndrome and can lead to 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) that contains the abnormal protein from the blood cells. 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.
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 complications.
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 complications.
Getting back...
I had a wonderful weekend...truly pampered...
the boys had a great time at the game...even though the team did not win...the temperature was 80!
My daughter had an art opening on Monday night....and it was fantastic...good showing and sales were made...
(if you live in the Rochester area it is at the OWL HOUSE on Marshall Street...and yes the art work has an owl theme!)
But now...we are back in the swing...Chemo today....blood work and the counts are still out of whack...even more than last week...So blood transfusion tomorrow...along with a Doctor appointment for me...so getting back to normal quickly....
AH....such is life!! But...feeling fine!
Be Well...
the boys had a great time at the game...even though the team did not win...the temperature was 80!
My daughter had an art opening on Monday night....and it was fantastic...good showing and sales were made...
(if you live in the Rochester area it is at the OWL HOUSE on Marshall Street...and yes the art work has an owl theme!)
But now...we are back in the swing...Chemo today....blood work and the counts are still out of whack...even more than last week...So blood transfusion tomorrow...along with a Doctor appointment for me...so getting back to normal quickly....
AH....such is life!! But...feeling fine!
Be Well...
RELAX...
I was reminded yesterday that I have not posted....well, you know what they say..."No news is GOOD news"
The trip to and from Cleveland (4 hours each way) and the game (the Brown's WON for the first time this year)
all went well....Dressed warmly and prepared for any type of weather (ie: rain gear...under armor...hats and gloves) as the Doctor ordered!! All the cold weather gear was used...luckily not the rain gear! The trip however took its toll and it took 2 days to recover ....but he is looking forward to this weekend....This time however he will be staying over night for Saturday and Sunday (my brother in law is going) This should take the
sting out of the back and forth....
Not sure what I will do over the weekend....but you can bet it involves a bottle of my new favorite wine....
Appropriately called......RELAX!
Come Saturday Morning...
The 2.5 hours for the blood transfusion went well....and Michael actually has a little color to his cheeks...
and he actually ate most of his dinner....Seeing as at this point he has now lost 12 pounds, that is a good thing! (even though he is getting steroids!) So with all the gear getting packed it is off to the football game in Cleveland tomorrow (about 4 hours or so away)...He is so excited...win or lose (and they lose a lot!) doesn't matter...its just that he gets to go and sit in the stands! This stadium is right on the Lake Erie so he has to dress really warmly...but he is so looking forward to it....As for me...well, I think I'll take the day to get some of the things I have been putting off done...
BE WELL...
and he actually ate most of his dinner....Seeing as at this point he has now lost 12 pounds, that is a good thing! (even though he is getting steroids!) So with all the gear getting packed it is off to the football game in Cleveland tomorrow (about 4 hours or so away)...He is so excited...win or lose (and they lose a lot!) doesn't matter...its just that he gets to go and sit in the stands! This stadium is right on the Lake Erie so he has to dress really warmly...but he is so looking forward to it....As for me...well, I think I'll take the day to get some of the things I have been putting off done...
BE WELL...
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