Monday Again!!

I did not realize that I have been absent....but the week sort of got out of my control...Michael has been feeling very ill as of late....Today, we went for blood work Monday!! (as usual!!) and the red and white count is low and the protein is on the rise again....So no wonder he was feeling poorly...they had to give him fluids today for dehydration... so he slept most of the afternoon but had a short but wonderful time when the little love (our grandson) came to visit...He loves his Papa and continues to sit in his chair with him...and asks him to make up stories to entertain him...It is a wonderful thing...the bond that these two have...Our little one looks at all the meds that Michael takes and says....Papa...I just want you to feel better soon because I love you SO VERY MUCH!
Out of the mouths of babes!

Answers?!

although I was loaded down with questions...I did not receive very many answers (at least not concrete answers) ...Mostly ..."we have to wait and see" The biggest thing is that he has to get the bone marrow biopsy to re stage him...He will still be in Stage IV of the cancer(or so she believes from his blood work) but there are letters and numbers that go after that ...Right now he is in STAGE IV...B (which is the B cell of the blood) and has 3 out of 4 making him fall into the aggressive cancer category...She does not expect this to change...and when he had the last bone marrow biopsy it was in 65% to 75% range of his marrow....She is hoping that has NOT increased...
He may or may not be a candidate for the bone marrow transplant depending on where that % is now...as he would have to have enough healthy stem cells to harvest. The reason to do the transplant is to REALLY be able to give him such a HIGH CHEMO treatment that it literally kills off everything (which means both good and bad cells) so the transplant is necessary because otherwise you die immediately. If he did have this...the HOPE would be that the new healthy stem cells that would be placed in the bone marrow would NOT allow the cancer to return for a longer length of time...perhaps a year...the problems with blood cancer is that it hides out in different organs and then floats back into the blood stream...taking over quickly...
If he did not have this treatment or if he is not a candidate for it he would or could get 3 more high dose treatments of the chemo he is getting now...hoping that might slow it down...and he could continue to get blood washings and transfusions....although eventually this would not be enough....
They are not setting a time limit on anything at this moment...
She DID say that it would be good to go on a vacation and try to relax a little before more treatments are done...She suggested as early as April...So now I will start doing some work on places to go in Florida (but it will have to be within driving distance of a VA hospital...just encase)
And actually this will give him something GOOD to look forward to...
So am I still confused?...Sort of....But...I continue forward...one step...one day at a time....Nothing more....nothing less!

Questions??????

I have an 11:30 appointment with the Doctor....ALONE....with 2 pages of questions to be answered ... WISH ME LUCK!

Blood work Monday...

We waited for the results of the blood work..and although the levels were a little off as usual because of the chemo and just the fact that he is anemic....they sent us home after the 1st in the series of booster shots to bring his white blood count up....No matter what happens from here the white count has to improve in order to fight off any kind of infection...I realize that they are doing this in hopes of getting him strong enough to undergo the transplant if he is a candidate...but right now he is tired...and is not sure if he wants to undergo that process...I am trying to remain calm...cool and collective...as I collect my questions for the Doctor...and in order to not put any undo pressure on him at this point....All of these procedures have taken a lot out of him...And I think just knowing that it did not work has deflated him....his "fight" seems to be pretty weak right now...So we will lay low...take it as it comes for the next 3 weeks....Do the booster shots and anything else they might recommend at the clinic...and then I have to once again don my SUPER WIFE cape and give him ALL the reasons that he needs to at least go and talk to the transplant team and hear what it is that they have to say....I am tired today...it was a long weekend ...some silence...some reflection....some laughter...getting together with family...and some fear for the future...

And this is what I got today!!!!!!!!!!!!!!!!!!!!!!!!!!

What a surprise!! Michael had my brother in law take him out today....and this is what I got for Valentine's Day!!! I am beside myself!!

Happy Valentine's Day!

Last day of Chemo...

Today, was the last day of the rounds of chemo....we had a partial sit down with the Doctor...the game plan is going to be that he will get a series of booster shots next week every day to build his white count up.....He will continue to come in for blood work on Monday's and they will treat him according to what is needed (blood washings...transfusions...) we will be going to see a specialist in stem cell replacement...to see if he is a candidate for that procedure (which I understand is a difficult and painful one) in hopes that it will cause the cancer to go into remission for a while...perhaps a year...although I am not sure of the quality of living one has after this procedure and I am going to be doing research on it....I have so many questions that I am NOW (after leaving the office of course) beginning to wrap myself around...and have decided that next week I will make an appointment to see the Dr. myself and sit down and get as many of them answered as possible...I need to be informed...Michael would just do at this point ANYTHING they told him to do ...but I need to know more...I want more answers...I have to be educated as to what they think the outcome might be...and what quality of life we can expect...and how much it will effect HIM...ME...US....These past 6 months have been difficult...So much has been put on hold...So much has not even been able to be done...waiting...watching....Life is for living....EVEN when dying....and I believe that if there is a choice to be made in how we die than we have a right to make that choice....If you were given a time span and they said....6 months....you could travel...you could enjoy....or 12 months...you could under go treatments ...be in hospitals...go to Doctors every day....Which one would you choose? I know which one I would choose for myself...and we each have to make that decision if presented to us...and we each have to stand by that decision made by someone else....but if you do not ask the questions....than you cannot make an educated...personal decision....I think that is fair.....Don't you?

A boy and a dog...

This is what brought JOY to our lives today....going to build a bear with our almost 4 year old grandson (he will be 4 on the 15th of month!) ...Anyhow...he made this dog there and wanted an Iron Man outfit to go with the dog....when the woman there asked him....what is your dog's name going to be....He answered...TONY STARK....well...duh?!?! Of course..everyone knows that is Iron man's REAL name!! LOL....(well the woman at Build a bear didn't!!) You just got to love the wonderment of a child...He was such a joy today!!! Be loved every minute of our day...from...
Are we almost there yet....to going home in the car ...with TONY STARK in his car seat...(a box)
and our little love wanting made up stories told that we all had to add to....It was a beautiful thing!! Which caused lots of laughter....I think he needs to come around a little more often!!!

A poem...

May Today
for Pattie and Michael

May today be full
of moments, rare and beautiful

Morning snuggles and aromas
light and gratitude,
grace

Afternoon togetherness,
rest and comfort,
ease

Gentle dusk serenity,
accepting twilight,
peace

Nighttime prayers and dream journeys
healing in darkness,
faith,
hope,
LOVE

~Robin O'Neal 2/7/09

We received this wonderful heart written poem from a friend that I met at a retreat some 4 years ago...along with a card that carried more messages of promise and love...and a book to inspire me as I travel this path....
My mail box has been overflowing with good wishes...white healing light...love and peace...blessings and prayers....And my heart if so full....I thank you all....Queen Mum (Phyllis)
and Marney for the wonderful cards received this very day....This is the week that we looked forward to and this is the coming week that we dread at the same time....
Thank you all...Barb...Brenda...Terri...Luna...Lisa...Pat...Sheila...Glenda...Betty Boo...Swaney...Swestie...Journeyer...Goddess...Linda...JoAnna...and all who come here with their wishes and love...Thank You...

Laser Surgery...

This morning Michael had the laser surgery in his "good" eye to help stop the fluid from leaking into his retina....He will be wearing a patch over his bad eye to stop the vision of distortion that he gets from that....So far...he is doing well and even with the drops that they place in the eye to numb it...HE CAN SEE BETTER!!! He can actually see ME!!! This is amazing...because he hasn't been able to see anything clearly since last September!!! Modern medicine....You've got to love it!! This week now is going to be quiet till Friday...and I plan on finishing my custom work and start a doll making project!! All is good today!!! And even the weather is cooperating...the sun is not shining anymore today...but the temperature is mild!! Making me smile even more!

Last week of treatment....

As usual we went for blood work today....The white count has gone up 3 points...because of the booster treatment shots....It is still low, but that is to be expected with the chemo (the bad with the good as they say!) They did not have us wait today for the protein count as we will be having the laser surgery tomorrow for the right eye...and he will wear a patch over his left eye so that his vision may appear normal...that all remains to be seen after the surgery....The Left eye that he is totally blind in still needs to have surgery but the Oncologist has asked that we put this off for a while....And with all that is going on at the moment that seems understandable....The last round of chemo is Friday....and we are anxious to get this over with to see what the future has in store for us...It is difficult when you only get bits and pieces of a prognosis from week to week....But I think we are as prepared as we can be to have this sit down with the Doctors....I mean, really how prepared can one be???? It is amazing how many people are in the clinic week after week...and their treatment is so much different than ours....We would like to be able to plan things and not around Doctor visits...We would like to be able to go on a vacation without worry...and yet, we have not been able to do any of those things....Personally I would like to be able to know what the time is going to be like within the next 6 months...at least I think I am ready to know that....Life keeps going by...and we need to be able to enjoy it no matter what the outcome is to be....

Alls quiet on the home front...

Well, you know what they say....No news is GOOD news! Michael has been feeling pretty much the same as usual...tired...and weak...but even with all that is going on his spirit is high! He seems to be relaxing into a different routine...His sleep patterns have changed with this round of chemo...A little more normal...Up at 5...takes a nap at 11....and then he is usually up for the day..till 8 and then falls asleep....Fairly normal rather than sleeping 18 hours straight a day...I have been lost in paint...working on custom pieces and writing...doing my blogs...everything appears to be normal! I SMILE as I type that...We did get the OK from the Doctor for the laser surgery on his one eye to try to correct that and stop it from progressing any farther but, we have not been given the OK for the surgery as his blood counts are way to low...Next week is the last week for chemo...We have a busy week ahead of us and a lot of emotion that will go along with knowing that we will be having the sit down with the Doctor with what they can or cannot do for him once the chemo has ended....I am off for the weekend ...a well deserved R & R...and I SMILE once again as I type that!! So...all is quiet on the home front...and that is a good thing at the moment!

Carousal of life...

I am reminded of the Joni Mitchell song...Painted Ponies (I'm riding on the Carousal of Life...and the painted ponies go up and down)...well, if you are anywhere near my age you know the song!! LOL....I have come to go with the ebb and flow of the visits to the Doctors office every Monday for the blood work....And today was no exception....Blood work showed that the protein level had risen again this week, so they arranged for the blood washing right there and then...no waiting for another day....Then the white count came in...it is so low that he will now be getting a series of booster shots to help his body make more...every day this week....which means in return that his laser surgery had to be cancelled because the Doctor does not feel he is strong enough due to the counts...his resistance is so low that he would not be able to handle any infection ...So I think the ponies are down right now...the music is still playing....and I am still waiting to catch the brass ring!