October 31, 2010

Bob is doing a great job resting, sleeping and taking care of himself so far.  His  body wouldn't have it any other way at this point!  I have to say though....I'm shocked at how well his neck looks....3 weeks ago it was clearly sore and had sores...now he uses this special cream and his neck looks so great...so much better than 3 weeks ago!  WOW...bottle that cream!

The girls and I went to church......church has Trick or Treat for Unicef..the girls love that...I had  my camera with me  but I didn't take any photos!

Bob  had a couple visitors today...coincidentally 2  different Don's.  He was glad to have company... SPORTS !  Both Don's watch sports!

The girls and I went to Lenox to  parade and Trick or Treat....

St. Ann's in Lenox ...Halloween Parade begins here!

Thankfully Joan was willing to take the girls while I parked
near the community center...I was at least able to get a photo
from the "side lines"

YES  THAT IS SNOW!!!!!!

Chloe---waiting for the return!  She refused to wear
her SHARK costume...well she didn't really refuse...
it kept falling off!!

Trick or Treat!!!!

So that's all for now...more later..I'm tired!

October 28, 2010 He's home

Bob is home.  We saw him only briefly...he went right to bed. This was a long day for him.  His friend Tom drove Bob's car back to Alford  and another friend of Tom's  followed them  here in order to take Tom  back home to CT after leaving Bob off.

On Wednesday, when Bob  was figuring out his plan for getting home he told me he was planning on driving his car home!!!! WHAT??????????  I could hardly believe my ears...this person is not thinking clearly...
This was to be the plan.... Tom (from CT) was going to pick Bob  up in Manhattan and help him check out of Hope Lodge....he had quite a bit of stuff to carry...including several cases of his canned protein food......then Tom would drive them to CT and Bob would pick up his car ( which is there because of the Carnegie Hall concert a few weeks ago)  and drive to Alford!!!!!    YIKES YIKES YIKES....this plan did not sound safe to me!!!!!!!!!!!!!!!

I reminded him of all the medicine--- including Pain Meds --- he is on  (at least 2 narcotics) and that he could hardly keep his eyes open at the doctor the day before.  He finally agreed that he'd ask Tom to drive him to Alford and leave his car in CT for now.  Well, they were able to get Bob and his car home.  Success!

Now  I need to figure out how to  padlock his car so he can't LEAVE THE DRIVEWAY when I'm not looking!!!!  Trust me....there will be NO driving until he's off all the meds for a while and he's feeling stronger. This should be interesting...I hope he's a cooperative patient and he'll stay put!

October 26, 2010 Doctor Appts and Tonya's NY trip

What a day!

First of all,  if you only want to know about the doc appts skip to the bottom and you will find that info. I will increase the print size so you can find it more easily.  However whoever would like to hear about the "whole day" read on.  Yet another miracle in my opinion!

Olivia was sick today..a deep croupy cough...and Natalie was sneezing so I opted to keep them both home to rest and hopefully get better fast!  Daddy will  be home any day.

My friend Emily brought me to the train station bright and early this morning.  I was going to drive and leave my car but decided last night that it was best if I didn't have to deal with the parking ...or shall I say the possible  "lack of parking" at Wassaic.  It was also nice to have company on the way over.  We arrived in plenty of time..no stress.  All is well....then...

I boarded the train.  I called my mom and the girls quickly to say I was on the train.  Then I called the school to say the girls would not be in school today.....at this point it's about 8:20.....while I was finishing up on the phone with the school Bob was calling in so I immediately answered it.  Here's the email I sent Emily, Anne and Ginny ......

"Crying on train.

I just told a woman off.  Bob called me almost as soon as I got on train. I was having trouble hearing him ...I was near the door of the train  where it is a bit louder....sometimes it's hard for him to hear me....while Bob is sharing with me his happiness over having his last radiation treatment today and he was  going over the plan for when I arrive ....some woman comes over and rudely tells me my voice is carrying throughout the train and to enjoy my office!

I finished up with bob abruptly and went and gave her an earful...she didn't know what to say except she was sorry....many times...there were only about 6 people on the train and each one came over to me saying she was completely out of line. It's not as if I was carrying on a 20 minute conversation on the phone....   Well my flood gates are open and its pouring out...its probably a cry that I have needed to have but what a way to start it!!!!! 

Yes I know I can be loud but I had reason this time!  Trying to laugh.  "

So that was the beginning.  No tissues...didn't expect a waterfall...someone handed me a few wrinkled  napkins...I just couldn't stop the tears.  I was crying the whole first leg of the trip...I switched trains in Brewster.......A man came over, asked if I was OK  and made conversation with me  which helped "change the focus".  He knew what he was doing.  He completely changed my  focus and my tears subsided.   He told me all about his new adventure in Overeaters Anonymous...told me about his wife...how good he is feeling..... God bless him.  He was very kind.  

I arrived at Grand Central. I told Bob I would be there at 10:40 and I would go  directly to Beth Israel so he wasn't late for his 11:00 appt with the Dr.Culliney.   I walked out of Grand Central...called Bob and there was no answer. I stopped and waited in line for a taxi..it's quite organized outside Grand Central...there's a man there organizing who is "next".  I was next in line when  my phone rang.....it's Bob...he said he is IN Grand Central at the information booth.....he said to wait where I was and he'd come out.  I waited...I let everyone go ahead of me.. Within moments I saw him walking toward me.  Surprised that he was there  I said "I thought I was meeting you at Beth Israel"...He said he sent me a TEXT to tell me of the change......FYI...I'm not real good at paying attention to texting coming or sending texts..........I didn't even see the text until later!.......we waited in line again ...we finally got a cab and he explained he had to go back to Hope Lodge to feed himself and take meds...He said he didn't know what time his appt  with Dr. Culliney was ...he said no one told him.......I reminded him the "appt reminder phone call" came to our  house and the appt was at 11:00. ......remember he's on pain meds so from what I see his thinking isn't really clear  ...There was no way he was making that 11:00 appt...he went to work this  morning to collect some things and erase a bunch of emails.  He didn't bring  his medicine and he said if he waits too long to take it that things get bad quickly.   He had to go to Hope Lodge first.

He called Dr. Culliney's office (Medical Oncologist) to explain he missed the 11:00 appt.....they said the next available appt is Nov 2 .....after explaining that he didn't live in NYC and has to travel from MA the person still didn't budge..they said they are all booked and could not squeeze him in.   He said he'd decide what to do and call back.  I suggested calling the nurses..I didn't think it was a  good idea that he leave NYC without having this necessary bloodwork to check levels.. They check bloodwork weekly.

...LUCKILY Nurse Daisy (Dr. Culliney's nurse) answered the phone...HIGHLY UNLIKELY that she answers..we always get voicemail.....Bob explained what happened...NO PROBLEM..come at 1:00....PERFECT.....the appt with Dr. Harrison  ( Radiation Oncologist)  is at 2:00..PERFECT TIMING...I even had time to eat some street food before appts begin .... I must say that food was was delicious! I was very hungry....Chicken Gyro.   I ate in Union Square and we watched the people, squirrels and children busy in their day.

Dr. Culliney's Report:  Medical Oncologist  Blood work looks good...good cell counts and such...he is anemic but not enough to need a blood transfusion. He updated scripts....said DO NOT cut down on pain meds yet...Bob may feel worse for another week or so then will start to slowly improve.... REST REST REST...take medicine on time..REST ....feed 6-8 cans of food a day...lots of Gatorade...REST....SLEEP....will see him in 2 weeks.

So we finished with Dr. Culliney and his nurse Daisy then  we were  off to see Dr. Harrison.  

Dr. Harrisons Report:  Radiation Oncologist:  Dr. Harrisons nurse Elyse STRESSED...rest, rest, rest, rest...sleep...take meds on time....6-8 cans  a day..lots of gatorade....she updated more scripts...encouraged NOT going back to work until at least Jan. She said YES you could  go back in Dec however YOU WILL prolong this process of healing.  REST REST REST...do not talk on phone...email... 

Dr. Harrison said he is confident  the tumor responded well....he will know more info  in 3 months when there is another scan...he will know then if it responded completely or mostly....his neck area  has to  calm down  and rest after this intense protocol,  then more decisions may be  made. They may do radiation seed implant however this  is not the time to decide any further treatment.     He explained Bob may feel worse for a couple weeks..radiation and chemo are  cumulative...after a week or two things will improve slowly....REST...REST...REST...EAT....Do not lose any weight...   He said you made it through the treatments..horray! 

So that was that.  By this time Bob was EXHAUSTED. He could hardly keep his eyes open.  We said Good Bye to everyone....he was quite popular with the staff!..all the nurses said they would really miss him...(:

At this point I realized I could get home to MA at a decent time so mom could leave early tomorrow.  She has her work to do at her house.  Bob encouraged me to go because he knew he would be sleeping the rest of the day.  I hopped in a cab and off to Grand Central Station. Bob left for the subway to head back to Hope Lodge.  

I arrived at Grand Central around 2:50  and I was calling everyone to see if I could get a ride from Wassaic. I wasn't having much luck finding people home. This is VERY short notice but I felt confident something would work out. I knew Emily would come but she probably wouldn't get there until 8ish...

I boarded the 3:45 train...WITH MY CUPCAKES FROM "CRUMBS"....the treat I'm bringing home...for ME and for the girls!!!!....I'm eating one now as I write this  (:

So now I'm on the train...I quickly remembered cell phones do not come in UNDERGROUND!  So after a bit we were in daylight again...I continued to call and send messages...no luck....though I did know Emily would come if all else didn't work out.

I chose a seat facing the majority of passengers.  I looked at  one passenger who looked SO familiar..he looked just like our neighbor and friend Bill.... After a few minutes...putting my glasses on  and staring..trying to figure out if it was him...I decided to stand up and walk over...

It WAS Bill and Diana...they were on their way home from France. They were away  for several weeks and here they are  ON THE SAME DAY.....AT THE SAME TIME.....ON THE SAME TRAIN......IN THE SAME CAR!    A FORTUNATE STROKE OF SERENDIPITY!  Or I as I like to believe..one of life's little miracles!  Their car just happened to be parked at Dover Plains and they have plenty of room for me and my cupcakes!!!!

So I'm home.. Thank you Bill and Diana.  Thank you God!

Good night...time for bed.

October 25, 2010 Police were called!

Yes you read that right the police were called!
It seems someone decided to attack our mailbox...and I mean attack.  Bob created a very sturdy mailbox...one that withstands snowplow force....unless of course the snowplow HITS the mailbox.

Today our mailbox is in 2 pieces.  It looks as though a pumpkin was the culprit..though there is something called "Mailbox Baseball" which has been happening in this area. I never even heard of "Mailbox Baseball".  Have you?

This must have happened on Saturday night.  On Sunday morning on the way to church I  noticed a broken pumpkin in front of our house near the farms driveway.  I remember..in the back of my mind...thinking that it was strange because it was  not our pumpkin....so someone brought it from  somewhere else and they broke it in front of our house.   I also thought it was strange that it was on the side of the road.  When I was a youngster  if someone broke a pumpkin it usually belonged to the house it was near AND it was in the road.

That being said we were on our way to church and I did not notice the mailbox door was part of the pile of pumpkin debris.  Though I thought the scene was strange I didn't think much of it.

I called the police today when it was discovered our  mailbox no longer existed in a functional manner!  After talking to me the state police officer rode up and down the road and found other neighbors whose mailboxes were also targeted. The belief is that the pumpkin was used to destroy the mailbox.

Soo....when I get home from NYC on Wed I will work on finding a new mailbox. Never a dull moment! 

Bob sounded pretty good today.  He was able to talk on the phone for about 15 minutes.
I will bring my computer to NY so I will try to do an update after the doctors appointments Tuesday afternoon.

Until then...

October 23, 2010 Resting and Watching sports

Bob is resting and watching sports at Hope Lodge.  His last radiation is either Monday or Tuesday.   His next appointment is on Tuesday afternoon  with Dr. Harrison (Radiation Oncologist) which I will attend with him. He may also have an appointment around noon  that day with Dr. Culliney (Medical Oncologist).

In order for him to talk at this point he needs to gargle with salt water right before talking. This gives him a short window to talk.

One of the professionals at Beth Israel  --nurse?  doctor?  Speech therapist?-- not sure who said it, however, they said the next "leg" of this is very difficult...I'm thinking because radiation and chemotherapy are cumulative???   It's important to keep exercising the mouth and tongue.

We'll know more Tuesday.

October 21, 2010 He talked some..

Bob called last night... and talked...sounded "decent'... I'm not sure how much he's speaking but it was good to talk to him. He was  exhausted. He said he's glad the day is over.  I agreed.  We had a bit of a laugh over the pain scale debacle.  (:   

This ride is a  roller coaster.  Everyday is a new adventure.

Let's see what today brings.  My mom is here so she will bring the girls to school and I can get caught up on some much needed paperwork.  That's a good start to the day...mom is here and I'm staying home and accomplishing something! (:   Maybe even accomplishing it from beginning to end!  THAT would be amazing!

If the rain holds off mom and I may bring some more firewood near the house.  I DO know how to run the tractor so we could get a lot done in a short time. We'll see how the weather is.

Until later...

October 20, 2010 Part 3

Bob is SO glad today is over....I am  also so glad today is over!  He is off to bed.

Bob is back at Hope Lodge.  Last radiation is on Monday.  I will go to his Monday Dr. appt with him to find out what is next.  The nurse said he is in for a "difficult part" of this treatment now for several weeks... I'm sure we'll find out more about that...I'm thinking because the treatments are "cumulative". Anyway...I'm signing off for today.  I need rest.

good night.

October 20, 2010 Part 2

Well... this (read entry below)   could be --probably is----a miscommunication....here's why...

Beth Israel has a different scale than I am familiar with.....

1 is great
10 is awful

so Bob's  "2"   in reality is probably good..nurse is going to check in with him anyway just in case.....  but sounds like it was  a miscommunication.    She said he was a 2 yesterday as well and a 2 in their language is good!

I always use 10 as being the best and 1 being  the worst...Remember ...the movie  "10"  with Bo Derrick...I was a youngster but I still remember 10 was a good thing......anyway....she was a perfect 10 not  a dreadful  10...laughing now...stressed this morning.


I just googled the pain scale...What did we do before google??????

The book Mayo Clinic Chronic Pain is a very useful book......I refer to it often. Health care professionals typically measure pain on a scale of 0-10 , with 0 being no pain and 10 being the worst pain imaginable. [The scale they use is:  0-1 No pain 

2-3 Mild pain
4-5 Discomforting - moderate pain
6-7 Distressing - severe pain
8-9 Intense - very severe pain
10 Unbearable pain"

I thought he was in the "Very Severe Pain " bracket.   OY!

Ok I'm ready for a nap....I am drained!       Almost time to pick up the girls.  Can I start today over????

October 20, 2010 To go or not to go..THAT is the question.

I wrote to Bob this morning and asked him on a scale of 1-10 how he is and he said a 2.  Of course this concerns me.  I explained that I or someone can come..he's had many offers for help/visits from several people ..including me... throughout this process.......my mom is VERY flexible changing her plans last minute  to come help us...we are blessed.......and he says not to come.

I totally understand a persons need to go "inward" and heal.  People react to illness differently.  I also  know how important it is to be an advocate for your  own health and your loved ones health. I don't want to overlook anything.    I'm not sure how clear his head is with all the meds he takes.

I'm uncertain about  what to do.  My mom is already on her way here...she'll be here soon... so I'm free to go.  The only hold up is him saying not to come.  I want to respect his wishes but as I said I don't want to miss a clue that all is not well even though he says all is well....

I have calls into Bob's doctor and also to his  nurse to ask their perception of  "his condition" at this point...I need another opinion that's not coming from the patient!   My thought is he's probably routinely on pain meds so I'm not sure how clear his thinking is although..... he IS  VERY stubborn.
Is  this stubborn talking, is it mind altering meds  or a person who just a wants/needs to be alone???  How do I know?

During the week we have limited communication over the computer/email.  That being said you can imagine it's hard for me to get a clear picture of how he is and what is happening there.

more later...hopefully I'll have  a better picture.

October 19, 2010 Postponed

I just received an email from Bob..this is a portion of it.....
"They aren't giving me Chemo until tomorrow.  When they do it won't be the original chemo recipe.  They didn't like my sodium numbers and my creatin (sp) ?,

After I am released I'll get Zapped,  I can stop by Louise's to pick up the paperwork  after that."


So no Chemo today.  It'll give him one more day to rest before they administer it.  


My mom has been here driving me around while my car was overnight at the shop. The radio stopped working and the heat fan was making a bird noise....both parts have to be ordered so they will call me when the parts are in then the Sienna can go back for another visit! 
All that said I DO like the vehicle.

October 18, 2010 Resting today

Spoke to Bob earlier...he planned to rest all day today in preparation for the Chemo treatment tomorrow. Bob just wrote and said it was a no voice day...throat very sore..not talking.

Bob feels as though..compared to some other folks going through similar treatments...that he's doing quite well.  Hopefully the doctor will tell him what the following week will bring.  He needs to have radiation seeds placed in the back of his tongue so we aren't sure when that will be.

Tomorrow he will go to his radiation at the regular time, then to  his "Tuesday" appt with the doctor.  After seeing the Doctor he will go to the hospital to start chemo.

Yesterday Ann and Frank brought Sophia over to play with Chloe....they really tired each other out!  Sophia has the same "mom and dad" that Chloe has...she was born in the litter before Chloe's litter...so I suppose they are sisters, right?

October 17, 2010 Resting and Sports

Friends Tom and Marianne brought him home so he was home by dinner time...though he only eats and drinks through the tube now.

Bob had a very restful weekend.  He pretty much stayed on the couch, slept and watched sports. He enjoyed the Yankees game  Friday night.  I'm not sure what was on yesterday...enough to keep him occupied. (:

Harder to talk...he's exhausted.

 The girls "Stickered" daddy  Saturday morning..

The girls and I went to their friends birthday party  on Saturday afternoon...twin girls that turned 7! The party took place at Taft Farms in Gt. Barrington.

Birthday cakes and PIES!

We carved pumpkins!

Remember that smell?  That feeling?  

Michael  (twins dad) and Natalie were partners.
She drew her own face and he helped her carve
it...is that not the CUTEST pumpkin face??

Olivia flew "solo" this project...
she is getting so big!

Voila!

Can you find Olivia and Natalie's Pumpkins?

October 13, 2010 Sounds good

I spoke to Bob briefly yesterday and he sounds pretty good.  He has 10 more radiation treatments and one more Chemo which will be next week.  I  am not sure if things then need to be "reevaluated" or if he's finished....I'll let you know when I know.

Natalie is doing great.  She is in school though I have her staying in from recess due to the wind and them playing on "mulch". I don't need anything getting in the eye with stitches.  She really enjoys staying inside.  She gets to have a friend stay with her ..they did connect the number school buses and then colored them.

I've been having internet issues....ridiculously slow...I'm not positive but it seems whenever there is a holiday weekend our internet usage is slow or non existent ...hmmmm  I'm not sure WHY..maybe because it's being used more because kids are out of school..COULD that be it?   It sounds strange..."Over usage on the satellite"???    I don't know...however..if you don't hear from me for a bit you'll know why!  We don't have many coffee shops in Alford!

October 11 2010 Ta- daaaaaaaa TEAM WORK PREVAILS (:

A HUGE THANK YOU  to all!  

Look  what we did!!!!!

Now it's time for a snack!!

October 10, 2010 FALL Part 3 Sunday

Most of the piles that Matt, Amy and I created were picked up
yesterday  and the last few were done today.

Chloe even helped!!!!   (:  She tried!!!

We had two cords of firewood delivered ...
we were almost completely out of firewood.
Living in Alford we NEED firewood ...one never knows
when the power will go out!

October 9, 2010 FALL Part 2 Saturday

Work Party at the Doerr Household on Saturday....

Yes those are acorns they are collecting...we will give them to our  friend and helper
 Matt who requested them. He will feed the critters when the snow falls!

James...Thanks for coming and helping  ON your birthday and with your 

new cast and thanks to your parents for bringing you!

Thanks to everyone who came today...we moved some piles!!!!!

Oct 10, 2010 Fall Part 1

So we must back up a bit...

In the midst of planning for Natalie's surgery last week the leaves were falling FAST......REALLY fast!  One day there weren't many and the next day we were covered...

So many people have asked what they can do to help... and I've felt somewhat limited with ideas...the food/dinners have been a blessing in  many ways...one being that it frees me to do the other responsibilities that are ahead of us ... The girls and I can only eat so much and there are so many folks in this community willing and wanting to pitch in.

So this brings us to the leaves....YIKES...in my opinion Autumn at our Alford address is the most challenging time of the year.  I feel it is worse than our Berkshire winters....in snow you need "paths"

This was my dog Gizmo...a pekingese...who needed paths for his short little legs.

in Autumn you can't just make "paths"...you must move them all or at least most of them!  It's such a big yard and there are SO MANY trees.  Last year we were completely ripped off by a lawn company to do leaf clean up...there were 5 guys and the majority of the time 3 of them were "watching"....naive me thought they were "in training"......until we got the bill...I'm laughing now as I write this but Bob nearly fell off his chair when the guy told him the price.  I was there and witnessed the shock!

Anyway....here we are again!   Fall is here...winter approaching and Bob is NOT doing yard work at this point.  He needs to take care of himself.  So as I looked  outside and saw  the leaves blowing and blowing but they were  NOT blowing away!   Why can't they blow away...across the street to that giant field???  Wishful thinking!

About a week ago I mentioned the thought of having a work party to a  friend and they thought it was a great idea...so I mentioned it to another...again she thought it was an awesome idea!  Then I talked to one of my girl scout moms and she not only thought it was a great idea but said she and her boyfriend would come on their days off and help.    The next day they came....and they WORKED!

Yes this is Matt on the roof blowing off the accumulated needles.

This is Amy....she had this leaf blower on this particular day for 6 hours

My goal for the early part of the week--before leaving for NYC with Natalie---  was to make as many leaf piles as possible before the rain hit so that on the weekend when I had the work parties the piles could be moved.  This way everyone didn't have to listen to the blower ....that loud part would be done and piles could be moved....a great group project.

So by the end of their workday ..while I was making them dinner...it started POURING...

Amy hurried to cover the last couple piles..

You cannot tell by the photo but it is RAINING!

 We had a nice dinner together.  Yet another time these wonderful dinners have helped!

While I was in NYC Matt came with a friend on Friday and did MORE!  WOW!  We were ready for the weekend work parties!  Thank you Matt, Amy and ????  I find it amazing that I don't even know the friends name and he helped us SO MUCH!