I should clarify

I said 'facing my husbands death' when I meant to say...my husbands possible death..he is facing a life threatening situation.  I am always hopeful and determined if you will..to see that my husband will live to a very ripe old age. :)

we survived the End of Days

I know at this point, a lot of people are making fun of that guy who claimed we were all going to hell in a hand basket or better yet, to heaven while the evil folk would be left on Earth to suffer for their sins or something like that.  I figure that I just shouldn't worry too much about shit like this because when it's your time, it's your time.  I had a discussion with my brother Shaun about this a little bit before the media started reporting on it b/c there was this video out there on youtube or something that showed how people were going to just disappear and those left on Earth were not the chosen few, etc.  It really ticked me off and it kinda scared me too.  I guess what scares me is that whole 'it's not in my control' kind of thing.  I'm a person who likes to be in control..hence the fear of flying, my need to drive all the time (I make a real bad passenger), etc.  But, I seem to be feeling a bit better about the whole thing.  I seem to feel like I've reached a 'peace' about it all.  Facing death..my husbands death, in particular is sobering to say the least but it also kinda has me feeling like I'm sitting/standing up straighter figuratively if you will.  Over the years I think I've gotten a little bit timid; having Andy handle a lot of things where I most certainly could have done them myself..I don't mean chores, more like handling problems or dealing with other people.  And now, with Andy being in the hospital for a month or more and then home for several months where he won't be able to leave the house much and/or deal with problems...I definitely have to start gearing myself up mentally to deal.  I was a single parent for more than 8 years dealing with issues left and right.  My oldest daughter, Jenny, is a emotional and physical whirlwind..still is to this day (over 22 years later)..I had to deal with her illnesses and then once in school, her significant learning disabilities and eventual stubbornness about going to school.  Going to work and not making a lot of money for the both of us to live on, etc.  I don't have now and I didn't then, have a huge amount of family or friend support.  I have to rely on myself to make sure things get done.  So.  There it is.  The whole scope of it is; I have to rely on myself while Andy needs to pull back from his day to day responsibilities and focus on surviving this illness and its treatment and any complications in relation to it.  I'm gearing up and slowly changing my way of thinking and doing.  I have to get used to being stronger in the face of all this.  I'm blessed in a way...I get to prepare.  Not everyone does.

blood levels

Andy had an appointment with his oncologist today; just keeping an eye on those blood levels and so far, they are pretty stable.  His white count fell a little more, but not in a very significant or alarming way.  A good thing. :)

Some more news from Dana Farber

The coordinator emailed Andy this afternoon to let him know that a 21 year old young man is being asked to donate a blood sample and then be evaluated to donate in July with a possible admission date of July 8th.  That's amazing and exciting.  We're ever so hopeful that this will be what cures Andy. :)

More news.

A couple of weeks ago we were told that Andy and his sister Megan didn't match.  Today we were told that he and his sister, Erin, also didn't match.  However, they found over 400 donors; some of them have already been fully typed and appear to be matches already!!  This is very good news.  So, that June/early July stem cell transplant time sounds like it's very possible.  It's a little scary but very exciting also.  Hopefully, Andy's blood count levels will stay stable and there won't be any real urgency like as if the MDS turned to leukemia.  I've actually been feeling strangely peaceful about this.  I spent a lot of time praying on it, if you will.  I have faith that Andy will be cured with this stem cell transplant. :)  Oh, as a side note...I think I'd like to learn how to play the banjo. :)  Lauren wants to learn how to play the guitar.  I'm gonna look into that. :)  Something else to think about. :)  A good thing.

Some news...

Yesterday Andy had an appointment with his oncologist in Worcester.  Dr. O'Shea does blood levels checking; the good news is that Andy's blood levels are pretty stable.  They are almost the same as the way they were 5 weeks ago.  That's good news in that it means that this disease isn't being aggressively worse.  We'll be going back in two weeks to check the levels again.  He also answered some of our questions.  One of them for me...I was confused why I'd see mortality statistics..some where 4 years, some 5 and some 10 years, etc.  I was also confused as to how someone could get a stem cell or bone marrow transplant and not be cured..well, why aren't all people who get transplants cured?  The statistics are really based on how long the study is on from what I understand.  The being cured part..well, I guess there is a possibility that not all the cells in the marrow can be killed by the chemo and radiation treatments and therefore, that errant cell(s) can actually reproduce itself and before you know it; the patient is back to MDS or Leukemia again.  A patient can die from complications of the chemo/radiation treatments and/or from complications of recovery (such as infection)....That gives me a little bit more in the way of hope.  This one 'paper' that was published online said that there was 31% long term survival from the patients in their study...it kind of threw me for a loop...so, I asked him...so, do people just die after 4 years?  really...a very daunting prospect.  The bottom line...studies aside...is that no matter what, we..Andy especially, has to take one day at a time...never mind what 1, 2, 3 or 5 years from now...lets just take each day, be grateful for it and hope there is a tomorrow for him, for me, for all of us.  I'm looking to when we're both in our 60's and able to travel alone and all over the place :)

Okay...the other news.  That same day..we found out from Dana Farber that Megan is not a match for Andy..she only matches 6 out of 12 markers.  Now we're waiting on Erin's kit to be typed.  They hadn't received her kit as of yesterday.  She'd just sent it out two days later than Megan's, so we're not sure why it's taking so long to get to Dana Farber.  And we're hopeful that she's a match.  If not, another piece of news is that a preliminary search of the anonymous donor database has found several matches for Andy.  They will do further testing on these people if Erin turns out to not be a match, too.

This will hopefully allow us to move quicker on Andy's getting that stem cell transplant.  I went and bought a steam cleaner..to help keep the floors as clean as they can be.  I've developed a schedule of chores for all of us to do so that once Andy is home and these chores will absolutely need to be done, we'll be used to doing them.  We'll be starting that this coming weekend.  I've taken down the curtains and washed them and washed the windows and will be cleaning all other things so that we can start the schedule without having to do a huge amount of scrubbing, etc.  Spring cleaning if you will. :)  I've never been one to keep the house spotless, but that's going to change a little bit.  Funny thing is I would do a huge cleaning if we were getting guests, but now, we won't have to do that because we'll be on top of cleaning for the sake of Andy's health.

A good thing :)  Anyway, so that's all there is to it folks.  I'm not feeling especially introspective or anything like that.  Just kind of in a waiting mode.  I have myself a doctors appointment tomorrow to make sure I'm healthy as I can be considering my weight and that I have hypothyroidism and am prediabetic (other doctors have said that just means I'm diabetic..but I don't watch my sugars with monitor... and my doctor never said I was diabetic..she said I was prediabetic..so screw those other doctors!! lol)...I want my regular doctor to keep an eye on me rather than the endocrinologist..her attitude stinks and I don't want to deal with her.  I also have pain in my right knee and this weird pain in my right lower abdomen and I get this other pain in my upper right abdomen, just below my ribs.  Not sure what that can be..so we'll see.  Going to assume I'm as healthy as can be regardless. :)  Everything tends to work out. :)