Saturday, January 31, 2015

Saturday 1/31/15

Busy week last week!  In preparation for the bone marrow transplant I had multiple tests including a dental x-ray which required a trip by ambulance to the west campus of Beth Israel.  My first breath of fresh air since being admitted on 12/15!  Kate was with me and it was quite an adventure.

There are so many contingencies regarding the bone marrow transplant I hesitate to hang my hat on any date.  The general plan is to do the transplant in about three weeks.  We have a donor match from the bone marrow registry and all my tests show me to be a strong candidate for the procedure.  There is currently no leukemia cells in my blood which is encouraging.  I will have a bone marrow biopsy the week of Feb 9th (probably Monday or Tuesday) to see if I am in remission - until the results are in from that biopsy all dates regarding the transplant are tentative.

So it still is kind of a 'if this, then that...' situation.  I am so grateful we have a donor and a general plan.

I will try to be more diligent about updating the blog - last week was unusually busy with all the tests.

Love to all and thanks for your continued support for me and my family

Maureen




Wednesday, January 28, 2015

Wednesday 1/28/15

A beautiful snow free day after the blizzard of 2015.  Kate is here with me and we are having another lovely day.   It will likely be another week or so before my next bone marrow biopsy which will determine next steps - hopefully 'conditioning' chemo followed by the transplant.   The 'if this - then that' factors are mind boggling and I will spare you those.  Thanks for checking in and for all your love, prayers and support.

Love, Maureen

Sunday, January 25, 2015

Weekend Update 1/24/15 - 1/25/15 'A Very Guinness Weekend'

The staff arranged for a special visitor this weekend - our perennial puppy Guinness!  Jim, the kids, my Mom, Guinness and I spent the day chatting, eating pizza, and homemade whoopie pies in the shape of slightly deflated footballs :) (thanks Caroline)

What a treat having everyone together - Guinness was quite excited to see his Mama but managed to keep it together for the most part.  There is lovely little family room for visits like these and it REALLY lifted my spirits.  It was almost like I was someplace else for a couple of hours.

My Mom is here through tomorrow and will overlap Kate by one day (Kate arrives this evening).  We are supposed to get a "raging" storm Monday night into  Tuesday - hope travel for everyone goes okay!

Nothing much to report on the treatment/recovery side...for the most part I continue to feel pretty energetic and strong.  The low moments one would expect from my treatment come, are addressed, and absolutely do not set me back.

As always thanks for your love and support

Maureen


Friday, January 23, 2015

Friday Jan 23

Quick Update - feeling pretty strong today and so glad to have my Mom here.  She arrived on Wed and we have really had a nice time.  Jim and the kids come in this weekend (weather permitting!) and I continue to keep a close eye on deflategate.

Love
Maureen

Wednesday, January 21, 2015

Wed 1/21/2015

Another quiet day in store - this is the last day of my second 7 day course of chemo.  After this the next step is either straight into a bone marrow transplant or another round of chemo.  It is not clear if I will be going home before the next step.  And that next step is to be determined by a myriad of factors including how I respond to this round of chemo (so far so good despite some of the early side effects) and confirmation/availability of donor (more on this as I know more but things are looking promising)

Great friends spent the morning with me yesterday and my Mom comes in again this afternoon.  Again thanks for all your kindness and support.

Tuesday, January 20, 2015

Tuesday Jan 20th

I think this next week will offer not much in the way of 'new' information.  We are finishing up  the second round of chemo around Wed or Thursday of this week then it is a waiting game for my counts to come up (reference earlier posts from round 1 chemo for what that all means).  The medical staff is incredibly competent and responsive.  I am absolutely in the right place.

On a this is awesome note...Father Eric from our St Michael North Andover Parish came in to see me yesterday.  It was so nice Jim was here and Fr. Eric got a chance to meet my cousin Mark and wife Karen.  This week many of the St Michael middle schoolers are going on a trip to DC for the Walk for Life.  In addition to the walk, the kids will see Arlington National Cemetery and a monument or two.  Emma is going with several of her friends and Fr. Eric is a chaperone.  For the bus ride I suggested singing '100 bottles of beer on the wall' 100x but he thought he could come up with something more mission appropriate.

That's it for now

Much Love
Maureen

Sunday, January 18, 2015

Weekend Update / Saturday Jan 17 & Sun Jan 18

Bit of a lag since my last post - sorry about  that

On the "this is awesome front" my lifelong friend Lisa and her daughter (my Goddaughter) Taylor have been here since Friday.  They live in Florida and have braved some wicked cold temps to come see me - it has been wonderful and they are here through Monday.  My Mom comes back on Wed.  Hopefully we will climb out of the single digits by then!  My Dad's first cousin Fr Mike Crosby came by on Thursday.  He is a Capuchin priest and met with Cardinal Sean O'Malley prior to coming to see me.  In addition to the joy of seeing Mike, he also brought me rosary beads blessed by both the Cardinal and the Pope.  Between that blessing and your prayers I am spiritually fortified for sure.  And the empty shelf left by the Christmas decorations we finally took down were replaced by the most spectacular balloon bouquet from my friends at Words and Numbers.  They are very fun and thank you.

On the medical side - I started my second round of Chemo on Thursday night.  There were some potential side effects that became quite real for me (I'll spare you the details) and the last couple days have been 'low energy' to say the least.  This chemo regimen started with a pill and today moves to IV chemo similar to what I had in round one.  I guess it is not terribly uncommon for the first round to not yield the desired results and this does not change by prognosis (goal: remission followed by the curative bone marrow transplant).

If I've not returned a call or text please bear with me - everything seems to take a little bit more effort lately.  But please keep them coming - I LOVE your cards, comments, prayers, good wishes and mostly all you are doing for my family.  I have an amazing life and am so grateful to you all.

Go Patriots!

With Love
Maureen


Thursday, January 15, 2015

Thursday January 15, 2015

Many thanks for all your continued support.

The biopsy results came back and show about 20% leukemia cells.  A big improvement from when I was admitted.  However we need to do another round of chemotherapy beginning in the next couple of days (sadly no trip home just yet).  They've sub-categorized from the first biopsy the AML and this chemo will use a more targeted regimen.  Looks like I will be here another 4 weeks at least - again it's chemo, wait for counts to recover and bone marrow biopsy to see if I am in remission.  So kind of the same waiting game as the first time around.   This was not totally unexpected but certainly not the greatest news.  Overall my prognosis remains the same and we are still looking at the curative bone marrow transplant as soon as I am in remission.  Just need another boost to get me there!

Love to all

Maureen

Tuesday, January 13, 2015

Tuesday Jan 13, 2015

A lovely morning/early afternoon with visits from two North Andover friends Michelle and Anne Marie.  Which reminds me to once again thank all of you for your amazing love and support - the cards, prayers, comments on the blogs, meals for the family (thanks Marie/Ernie for the sign up genius), putting away our Christmas decorations (above and beyond Debbie and family!) and every warm thought you send my families way.

The big news here is the bone marrow biopsy scheduled for Thursday is now happening early evening today.  I am really happy about this - it means we will see some kind of result by the end of the week (vs. waiting until Monday).  So will keep you posted on this - again the end goal for this round is to find no more leukemia cells (or an 'acceptable' range of leukemia cells) in my marrow AND for my blood counts to increase.  Once my white blood cell counts are in fighting form, I can go home for a bit before the next phase of my treatment begins (more chemo to keep me in remission).

Now in this biopsy tonight we may find unacceptable levels of leukemia still in my marrow which means another round of chemo pretty much right away - if that needs to happen so be it - but lets throw a whole lot of prayers toward a clean bone marrow biopsy, the counts recovering, and a trip home :)

Love
Maureen


Monday, January 12, 2015

Monday Jan 12

The doctors came in last night and let me know they did not get a good sample from the most recent (3rd) biopsy.  We will be doing a fourth this Thursday.  This is beyond frustrating but I will not let it be a set back.

My counts continue to s-l-o-w-l-e-y climb but are not yet close to the numbers they need to be for discharge.

So since this is not the greatest morning of news, I thought I would remind myself of a few solids so far

  • Coming to Beth Israel Deaconess on 12/16, my white blood cell count of 168,000+ was truly life threatening yet here I am!
  • I made it through the chemo in pretty good stead - the side effects were very well managed 
  • I feel good today - a tiny dispirited but good energy/appetite/etc.  All that stuff we need to fuel our bodies for whatever life brings.
  • The fevers I had the first week of January are behind me (and my Mom was here to help get me through them).
  • There have been no leukemia "blasts" in the blood-work done in the last several weeks - thus no new leukemia cells are in my blood system as far as the blood-work shows.
Friends from North Andover spent their Sunday morning with me (thanks Jack and Judy) and it was great catching up.  Jim and the kids came by after Joe's track meet (North Andover boys and girls both won!) and it was wonderful seeing them.  Another sweet, fun visit with my amazing family.

That's it for now - have a great day

Love
Maureen

Saturday, January 10, 2015

Weekend Update Sat 1/10 and Sun 1/11

The medical stuff...The third bone marrow biopsy happened on Friday and we'll see results sometime next week.  The doctors need to see sufficiently positive results in this biopsy PLUS see my counts go up to a certain level before they will send me home.   I will have another round of chemo at some point soon and that will be a hospitalized stay (much shorter!).   But they really want me to get home first - this my friends is the current thing to pray for.

While the second biopsy was really encouraging, if the third shows concerning growth of blast leukemia cells, I may get another round of chemo right away.  Hate the idea of that but if it needs to happen better to get it started.

Oh and no fevers since Wed night!

The fun stuff ...John's' (my brother) visit wrapped up on Friday- I am sorry Boston welcomed him with the coldest temperatures of the season but John did just fine.  The kids came in the late afternoon and we had a  really fun visit.  There is not too much to do here so we talked, the kids rummaged through my food (we split the three ho-hos - now if that is not motherly love I do not know what is!), and we did some walking laps through the unit.  Looking forward to watching the Patriots game and maybe tailgating with the other patients prior to the game - not sure how that would work.  Will keep you posted.

Love
Maureen


Thursday, January 8, 2015

Quote of the day

"Don't believe everything you worry about"

My brother John and I were reading the mounds of information provided by Beth Israel regarding bone marrow transplants and we came across the above saying.  Thought it was worth a share

Update from here - John is in town and our visits have been wonderful - he brought me ho-ho's! I'm so happy!  Also have been feeling very good - no fevers during the day but mild one last night - maybe those are behind me as well.

The third bone marrow biopsy is scheduled for tomorrow.  This will tell us if my marrow is generating any healthy cells and if there is a 'concerning' level of leukemia cells.  The second biopsy showed the bone marrow was wiped out (which is what we wanted).  Hopefully we will get good results tomorrow - there is a chance leukemia cells are lurking and I'll face another round of chemo right away (it would happen eventually prior to the bone marrow transplant).

But we'll know when we know - as they say - "don't believe everything you worry about"

With Love
Maureen

Thursday Jan 8th

Well yesterday was fever free and made for a much more pleasant day.  (last night not so much feverr free but today's a new day)

Jim was here and we had a really nice discussion about my case with the fellow on my team.  We are in a holding pattern until my counts improve and at that point I may go home.  One way or another I will have another round of chemo soon (it will be a hospitalized stay) but they really like to get people home in between that first month in the hospital and the next treatment (Fingers crossed)

Thank you for all your comments, cards, food donations, love, prayers, visits,  everything - it is easy for me to slip into a sad place and all of have propped me up - I thank you and I realize I need to be a lot more thoughtful going forward.  You people have it down!

My brother John arrived yesterday and it was so good to see him.  We talked about everything and nothing and it was perfect.

So on the medical side - we are watching my blood counts improve (slowly) after the chemo eradicated everything that was there in the marrow but no one expects significant bumps until maybe the weekend,  I may have mentioned a third bone marrow biopsy was in my future - looks like that will happen this week.

I miss and love all of you and thank you/pray for you every day.

Maureen

Wednesday, January 7, 2015

Wednesday January 7

Good morning

Another chilly day in Boston (or so I am told) but the sun is shining brightly and it will be a good day!

Tuesday, January 6, 2015

Tuesday January 6

My absolutely adorable nurse Julie wrote Day 21 :) on my little whiteboard.  Hard to believe!

Still fighting a fever (or fevers) and there was a lot of activity in my room last night with people making sure I was okay (I was okay once they left so I could sleep :)

Bottom line is the combination of being neutropenic and ...

Finally - I saw an accident out my window!  From my perspective it is the worlds smallest fender bender that now has 4 people circling the two cars.  They need to move those cars and stop standing in the middle of the street!

But I digress - we were rightly cautioned that fever(s) were in our future - as my counts recover hopefully all of the fever nonsense will be behind me

Feeling strong and have a decent energy level today.  Off to do some walking laps around the unit :)

Love Moe

Monday, January 5, 2015

Monday January 5, 2015

Today is starting off extraordinarily good start.  The fever has broken (for now) and I feel pretty good.  The preliminary results of the CT scan showed nothing concerning

Today is my Mom's last day - I wish I had the consistent energy I had the first two weeks - but it was nice to have Mom here when I was not feeling so great.

More Later

Sunday, January 4, 2015

Weekend Update 1/3 & 1/4/2015

Happy Wildcard weekend!

These last two days were not so awesome for Moe Staudt.  My medical team cautioned I could expect fevers and nausea.  Yesterday into today my temperature fluctuated from 99.8 to 103!  Fortunately, we were able to get it under control pretty quickly.  They took oodles of blood to see if they can isolate the  culprit causing the fever but it might be as simple as I am neutropenic and I am likely to get a fever.  A CT Scan is in my future for this afternoon (again just to see if we can get a little more information).

Now the good news...my counts will hopefully start to recover by the end of this week.  Once that happens I should feel better and have more energy.  Also improved counts are critical to my heading home.

My Doctors have suggested I temporarily limit visitors since my fever had been so high.  I will let all of know when that changes as your visits have been critical to my keeping the faith

With Love
Maureen

Saturday, January 3, 2015

Saturday January 3

The second bone marrow biopsy results came back yesterday and they show a clean bone marrow. So no more chemo (for now) - instead this is a period of recovery where my marrow produces red blood cells, platelets, and white blood cells.  Within the next two weeks I will have another bone marrow biopsy which will hopefully confirm there are still no leukemia cells (or if they are there, they are in an acceptable range).

At some point during all of this I will head home but all indicators are that trip will not happen until after the third bone marrow biopsy.

Next up is more chemotherapy to keep me in remission followed by a bone marrow transplant.

I am so grateful  and lucky the chemo did its job in this first round.  It is wonderful to go into the next phase feeling strong.

Another blessed weekend for visitors with my Mom, Jim, the kids, and my brother-in-law and sister-in-law.

More later and happy sunny Saturday!

Love Maureen

Friday, January 2, 2015

Friday January 2, 2015

New Years Day was a blessed day with visitors (Mom, Aunt Debbie, Jim, Emma) but I was sooooo tired. Despite the fun conversations I kept dozing off - perhaps my mind and body associate New Years Day with napping! Anyway,it makes me really appreciate the days when I am not tired - like today - yeah!

Looking forward to seeing some good friends today - apologies in advance if I fall asleep on you - nothing personal.

I was watching the news this morning and saw a segment on cancer Researchers have found that bad luck plays a major role in determining most types of cancer rather than genetics or risky lifestyle choices such as smoking.  http://time.com/3651785/cancer-bad-luck/ Go figure
Love
Maureen

PS my medical team may walk me through the 2nd bone marrow biopsy result sometime today.