I hope everyone had a nice Thanksgiving. Time goes by so fast...that was the last day I posted and it seems like it was yesterday. I'm not sure where the last few days have gone.
Bob is "ok"...not great. I suggested today that he call his doctor because he is so cold...chilled through. Is it the weight loss? Is it a side effect from treatment? hmmmmmmmmm I have no clue. I suggested giving his doctor a call but he has not called as of yet. Maybe tomorrow...
My mom bought him and electric blanket which is a big hit!
Eating is still a difficult challenge. I made him a poached egg this morning and he did get that down after a while and he also ate some pureed turkey soup for dinner. The feeding tube is still his primary source of nutrition at this point. He is still sleeping quite a bit.
Olivia has been sick and is going on another antibiotic today. Here's hoping this one works.
That's all for now...lots to do before bed.
Take care...
Tuesday, November 30, 2010
Thursday, November 25, 2010
November 25, 2010 Almost home
Bob made it almost home without getting sick but as soon as they were off the highway he did get sick. At least he was able to sit with us and eat a little something.
Hope everyone had a nice day!
Hope everyone had a nice day!
November 25, 2010 He ate a deviled egg!
Hello all,
Wishing everyone a very Happy, Healthy Safe Thanksgiving!
I also wanted to share the good news.... Bob ate a deviled egg...maybe he's finally turning the corner!
Enjoy your day!!
Wishing everyone a very Happy, Healthy Safe Thanksgiving!
I also wanted to share the good news.... Bob ate a deviled egg...maybe he's finally turning the corner!
Enjoy your day!!
Monday, November 22, 2010
November 22, 2010 Good News so far
We are on the train heading back to Wassaic and we are SO looking forward to being home! These are definitely marathon trips to NYC! We leave the house at 7 am and get back at 7 pm. There was just an “altercation” between a woman and the conductor..actually 2 conductors. Oh the drama!
Bob seemed to be doing pretty well at the beginning of last week. By Thursday he was low energy, voice was very rough, mucous seemed to be worse again and he was constantly chilled. He looked pale and .....frankly pretty sick.
We were both nervous this morning.... though we were looking forward to this check up and getting new blood work to see what's going on in his body.
On arrival at Grand Central Bob had a dizzy spell which stopped us in our tracks for a bit...he was nauseous as well as dizzy....I thought he was going to pass out! Thankfully after a few minutes it passed and we headed to the subway which brings us directly to Beth Israel. We saw our dear angel Louise.
The first doctor that takes all the “info” and does the initial exam (I think these are docs that are being trained to specialize in this field) found that Bob has an infection in his mouth...Thrush. Oral thrush and other candida infections can occur when your immune system is weakened by disease or drugs .
"Cancer. If you're dealing with cancer, your immune system is likely to be weakened both from the disease and from treatments such as chemotherapy and radiation, increasing your risk of candida infections such as oral thrush."
They gave him a prescription to take care of this. I'm sure the thrush is a portion of the reason that eating has been out of the question. His mouth looks sore.
Dr. Harrison used a scope. The scope has a “camera” on the end that makes it possible to see everything on the attached TV screen...amazing.....they numb his nose and feed the scope through his nose....Here’s what Dr. Harrison found...
NO CANCER IS VISIBLE! HORRAY!
It was evident the area is still quite inflamed. The entire area where the tumor was appeared white which indicates it is healing.
Blood work shows that he is anemic which they are not surprised about. Other than that the blood work looks good.
The next crucial test is the PET scan on Jan 20 then Dr. Harrison will give us the results of that on Jan 24. He doesn’t have to go back to the doctor until then unless something comes up and he feels the need to go.
Until then he MUST eat food..tiny amounts VERY SLOWLY! He has to continue to rest and take it easy. He is still on pain meds which he will start to decrease soon.
The trip home from Wassaic was a tough one for Bob. He was very nauseous again and we pulled over for a while. I think motion must be playing a role in feeling so sick. This is why he does so much better laying low at home. He can then just focus on taking in food and meds when needed and resting. All the commotion of travel messes up the routine!
We are home now and he's in bed and I'm going to bed.
Good Night
Bob seemed to be doing pretty well at the beginning of last week. By Thursday he was low energy, voice was very rough, mucous seemed to be worse again and he was constantly chilled. He looked pale and .....frankly pretty sick.
We were both nervous this morning.... though we were looking forward to this check up and getting new blood work to see what's going on in his body.
On arrival at Grand Central Bob had a dizzy spell which stopped us in our tracks for a bit...he was nauseous as well as dizzy....I thought he was going to pass out! Thankfully after a few minutes it passed and we headed to the subway which brings us directly to Beth Israel. We saw our dear angel Louise.
 |
| This is our "angel on earth"..Louise |
"Cancer. If you're dealing with cancer, your immune system is likely to be weakened both from the disease and from treatments such as chemotherapy and radiation, increasing your risk of candida infections such as oral thrush."
They gave him a prescription to take care of this. I'm sure the thrush is a portion of the reason that eating has been out of the question. His mouth looks sore.
Dr. Harrison used a scope. The scope has a “camera” on the end that makes it possible to see everything on the attached TV screen...amazing.....they numb his nose and feed the scope through his nose....Here’s what Dr. Harrison found...
NO CANCER IS VISIBLE! HORRAY!
It was evident the area is still quite inflamed. The entire area where the tumor was appeared white which indicates it is healing.
 |
| Dr. Harrisons nurse Elyse |
The next crucial test is the PET scan on Jan 20 then Dr. Harrison will give us the results of that on Jan 24. He doesn’t have to go back to the doctor until then unless something comes up and he feels the need to go.
Until then he MUST eat food..tiny amounts VERY SLOWLY! He has to continue to rest and take it easy. He is still on pain meds which he will start to decrease soon.
The trip home from Wassaic was a tough one for Bob. He was very nauseous again and we pulled over for a while. I think motion must be playing a role in feeling so sick. This is why he does so much better laying low at home. He can then just focus on taking in food and meds when needed and resting. All the commotion of travel messes up the routine!
We are home now and he's in bed and I'm going to bed.
Good Night
November 22, 2010 Good News so far
We are on the train heading back to Wassaic and we are SO looking forward to being home! These are definitely marathon trips to NYC! We leave the house at 7 am and get back at 7 pm. There was just an “altercation” between a woman and the conductor..actually 2 conductors. Oh the drama!
Bob seemed to be doing pretty well at the beginning of last week. By Thursday he was low energy, voice was very rough, mucous seemed to be worse again and he was constantly chilled. He looked pale and .....frankly pretty sick.
We were both nervous this morning.... though we were looking forward to this check up and getting new blood work to see what's going on in his body.
On arrival at Grand Central Bob had a dizzy spell which stopped us in our tracks for a bit...he was nauseous as well as dizzy....I thought he was going to pass out! Thankfully after a few minutes it passed and we headed to the subway which brings us directly to Beth Israel. We saw our dear angel Louise.
The first doctor that takes all the “info” and does the initial exam (I think these are docs that are being trained to specialize in this field) found that Bob has an infection in his mouth...Thrush. Oral thrush and other candida infections can occur when your immune system is weakened by disease or drugs .
"Cancer. If you're dealing with cancer, your immune system is likely to be weakened both from the disease and from treatments such as chemotherapy and radiation, increasing your risk of candida infections such as oral thrush."
They gave him a prescription to take care of this. I'm sure the thrush is a portion of the reason that eating has been out of the question. His mouth looks sore.
Dr. Harrison used a scope. The scope has a “camera” on the end that makes it possible to see everything on the attached TV screen...amazing.....they numb his nose and feed the scope through his nose....Here’s what he found...
NO CANCER IS VISIBLE! HORRAY!
It was evident the area is still quite inflamed. The entire area where the tumor was is white which indicates it is healing.
Blood work shows that he is anemic which they are not surprised about. Other than that the blood work looks good.
The next crucial test is the PET scan on Jan 20 then Dr. Harrison will give us the results of that on Jan 24. He doesn’t have to go back to the doctor until then unless something comes up and he feels the need to go.
Until then he MUST eat food..tiny amounts VERY SLOWLY! He has to continue to rest and take it easy. He is still on pain meds which he will start to decrease soon.
The trip home from Wassaic was a tough one for Bob. He was very nauseous and we pulled over for a while. I think motion must be playing a role in feeling so sick. This is why he does so much better laying low at home. He can then just focus on taking in food and meds when needed and resting.
We are home now and he's in bed and I'm going to bed.
Good Night
Bob seemed to be doing pretty well at the beginning of last week. By Thursday he was low energy, voice was very rough, mucous seemed to be worse again and he was constantly chilled. He looked pale and .....frankly pretty sick.
We were both nervous this morning.... though we were looking forward to this check up and getting new blood work to see what's going on in his body.
On arrival at Grand Central Bob had a dizzy spell which stopped us in our tracks for a bit...he was nauseous as well as dizzy....I thought he was going to pass out! Thankfully after a few minutes it passed and we headed to the subway which brings us directly to Beth Israel. We saw our dear angel Louise.
|
| This is our "angel on earth"..Louise |
"Cancer. If you're dealing with cancer, your immune system is likely to be weakened both from the disease and from treatments such as chemotherapy and radiation, increasing your risk of candida infections such as oral thrush."
They gave him a prescription to take care of this. I'm sure the thrush is a portion of the reason that eating has been out of the question. His mouth looks sore.
Dr. Harrison used a scope. The scope has a “camera” on the end that makes it possible to see everything on the attached TV screen...amazing.....they numb his nose and feed the scope through his nose....Here’s what he found...
NO CANCER IS VISIBLE! HORRAY!
It was evident the area is still quite inflamed. The entire area where the tumor was is white which indicates it is healing.
|
| Dr. Harrisons nurse Elyse |
The next crucial test is the PET scan on Jan 20 then Dr. Harrison will give us the results of that on Jan 24. He doesn’t have to go back to the doctor until then unless something comes up and he feels the need to go.
Until then he MUST eat food..tiny amounts VERY SLOWLY! He has to continue to rest and take it easy. He is still on pain meds which he will start to decrease soon.
The trip home from Wassaic was a tough one for Bob. He was very nauseous and we pulled over for a while. I think motion must be playing a role in feeling so sick. This is why he does so much better laying low at home. He can then just focus on taking in food and meds when needed and resting.
We are home now and he's in bed and I'm going to bed.
Good Night
Saturday, November 20, 2010
November 20, 2010 Bob said not a great day
I'm eager to get to NYC on Monday to see what is going on. Almost 2 weeks ago when we were in NYC the doctors/nurses seemed surprised that he wasn't taking"any" food by mouth...not even soft food. Well the truth is he still isn't "eating" anything by mouth. He is able to drink liquid slowly but he says the food "gets stuck". He told me today was not a good day which in my opinion is expected....good days and bad days.....however I"m not sure what to think of him not being able to eat even soft food at this point. It's been almost a month since the last chemo/radiation. I'll write again on Monday and let you know what the doctors say.
Thursday, November 18, 2010
November 18, 2010 still sipping
There's not a lot to report. Bob is still sipping liquid from a cup and a straw.
Next appointment is on Monday in NYC. I believe at that point Dr. Harrison will scope the area to see what it looks like at this point.
VERY windy here!
Next appointment is on Monday in NYC. I believe at that point Dr. Harrison will scope the area to see what it looks like at this point.
VERY windy here!
Sunday, November 14, 2010
November 14 part 2
Bob and the girls played with the remote control boat today.
This is Chloe...growing very rapidly.
She is 17lbs now.
 |
| Chloe...in action!!! |
November 14, 2010 Improving
Seems along with this GORGEOUS November weather we are experiencing an improvement in Bob.
Warm sunny days always help to take some of our pain away, isn't that true?
Yesterday he was successfully sipping OJ and ice and did some raking. We brought the guinea pigs outside while he was raking and they enjoyed their last run around the grass...yes they are in a homemade enclosure. (: Chloe was also outside and luckily didn't want to "play" with the pigs.
Natalie took a nap and had a great nights sleep last night! She even woke up early and went back to sleep! Horray!!! I always encourage her to do that...no need to get up before 5 when you are only 5 years old! She usually says she is too hungry to go back to sleep. Today was different! She went back to sleep!!! Until 6:30!!! YEAH
My friend Alana has a food blog and is in the midst of writing a cook book. I cannot wait until her book is finished. I will tell all of you when it's available..I'm so excited!!!
I do try to visit her blog routinely to read her well written entries and the many recipes she shares. In my opinion she is a wonderful writer.....Reading her blog is a source of pleasure for me....She makes me laugh and if I'm not laughing I'm smiling while understanding EXACTLY what she is saying.
Her blog address is...
http://www.eatingfromthegroundup.com/
While reading her blog entry Tuesday night..before bed after my very challenging day....I decided to read her entries that I had not yet read..I wanted to catch up. I always leave her site with my thoughts in a different place.......sometimes thinking about yummy things...smiling....
this is a portion of what she wrote....
By the way, anyone else's kids freaking out this week? Daylight savings transitions seem to get into their cells and make them scream. Anyone else? Tell me I'm not alone.
AHHH....so I wasn't the only one that had "child struggles" this week.....maybe...possibly...hopefully it was simply a normal challenging time in the life of a growing child. Who knows? Will I ever know????????? Probably not. What I do know is that daylight savings has ALWAYS been a challenge for our little girls. I suppose when I think of it my rhythm also gets shaken and it takes several days to recover.
I'm taking this Sunday morning time to write since I'm in such a good space at the moment...the girls slept great and woke up hopping and smiling.. .... I slept great......Bob is still sleeping and clearly improving .....the girls are upstairs doing their chores and getting dressed (their idea!!! before breakfast) .... getting ready for church....they are SINGING and GIGGLING ...TOGETHER....calling each other "sis"....Love that!
Sooo....before hunger kicks in and upsets the balance here I'm going to end this and make breakfast!
Warm sunny days always help to take some of our pain away, isn't that true?
Yesterday he was successfully sipping OJ and ice and did some raking. We brought the guinea pigs outside while he was raking and they enjoyed their last run around the grass...yes they are in a homemade enclosure. (: Chloe was also outside and luckily didn't want to "play" with the pigs.
Natalie took a nap and had a great nights sleep last night! She even woke up early and went back to sleep! Horray!!! I always encourage her to do that...no need to get up before 5 when you are only 5 years old! She usually says she is too hungry to go back to sleep. Today was different! She went back to sleep!!! Until 6:30!!! YEAH
My friend Alana has a food blog and is in the midst of writing a cook book. I cannot wait until her book is finished. I will tell all of you when it's available..I'm so excited!!!
I do try to visit her blog routinely to read her well written entries and the many recipes she shares. In my opinion she is a wonderful writer.....Reading her blog is a source of pleasure for me....She makes me laugh and if I'm not laughing I'm smiling while understanding EXACTLY what she is saying.
Her blog address is...
http://www.eatingfromthegroundup.com/
While reading her blog entry Tuesday night..before bed after my very challenging day....I decided to read her entries that I had not yet read..I wanted to catch up. I always leave her site with my thoughts in a different place.......sometimes thinking about yummy things...smiling....
this is a portion of what she wrote....
By the way, anyone else's kids freaking out this week? Daylight savings transitions seem to get into their cells and make them scream. Anyone else? Tell me I'm not alone.
AHHH....so I wasn't the only one that had "child struggles" this week.....maybe...possibly...hopefully it was simply a normal challenging time in the life of a growing child. Who knows? Will I ever know????????? Probably not. What I do know is that daylight savings has ALWAYS been a challenge for our little girls. I suppose when I think of it my rhythm also gets shaken and it takes several days to recover.
I'm taking this Sunday morning time to write since I'm in such a good space at the moment...the girls slept great and woke up hopping and smiling.. .... I slept great......Bob is still sleeping and clearly improving .....the girls are upstairs doing their chores and getting dressed (their idea!!! before breakfast) .... getting ready for church....they are SINGING and GIGGLING ...TOGETHER....calling each other "sis"....Love that!
Sooo....before hunger kicks in and upsets the balance here I'm going to end this and make breakfast!
Tuesday, November 9, 2010
November 9, 2010 Overwhelmed
As best I can see Bob is the same as he has been. I was gone all day...he was sleeping when I came home at 4:30.
The heat is fixed now....Bob said he was told there was a furnace clog which is why there was no heat....... ever heard of that one???? laughing...sort of!
I'll apologize now for sounding pessimistic however a furnace clog makes me wonder if the oil company (we are on auto refill) let the oil get too low and the sludge from the bottom got into the lines....hmmmm...now THAT makes sense to me....BUT It's not my specialty now is it!!!!!! If it were my car and there was a "clog in the line" they would tell me that I LET THE GAS GET TO LOW...wouldn't they ????
Today was a very difficult day. I've struggled with writing about it but I do feel this is all "part" of the situation and is a huge "part" of how the Doerr Family is doing. I'll simply say it's starting to take it's toll.
After waking up with no heat....though I did heat up a small bathroom so we could all get dressed...Natalie proceeded to have a very tough morning. ( I was supposed to pick up both girls early to go see a musical called Laura Ingalls Wilder at the Colonial Theatre. It was a performance advertised for school trips.....our school wasn't going and I have had my eye on this play since last year....I was happy it was coming to Pittsfield this year.....last year it was at Proctors near Albany) The tickets were purchased quite some time ago.
During our morning routine it became clear that Natalie was not up for the play....(I assumed she was overtired even though she seems to be getting plenty of sleep...I keep the girls on a predictable schedule.... although the time did change.....Natalie yawned about 7 times on the way to school)......
I made several phone calls ..folks I could call before 7am.....I was looking for an afternoon sitter to sit with Natalie while she slept so Olivia and I could still go to the play. Olivia LOVES Little House books...Our dear friend Diana agreed to come relieve my mom at 1pm so mom could head home. Mom has been here since early Sunday when she came at noon to help me get my car to the dealer..then she stayed through Monday while we went to NYC.....she has been here in the midst of taking meds for her sinus infection so she hasn't felt her "best".
After leaving the girls off at school mom drove me to pick up the Sienna (at dealer since Sunday getting radio and heating fan fixed......both were supposed to be covered by warranty and extended warranty...however low and behold there was a $50 deductable. SURPRISE....it was explained that with extended warranties there is always a deductable..REALLY...first they've mentioned it...it's amazing it's not mentioned when it's sold!!!!!! Anyway --paid it and left.
I parked the Sienna in Lenox for a couple hours while mom and I did errands ....we used moms car and took Chloe to the vet for her vaccination....did a few more errands...went back to Lenox to pick up Natalie....then mom took me to the Community Center to get the Sienna....from there I was heading to the library and the bank before pick up....I had a full 1/2 hour before picking Olivia up at noon.....mom took Natalie home to get her to sleep and she also took Chloe home.....Chloe had shots this morning. She was definitely tired.
I drove around the Lenox block (complete with much road work) 2 times looking for a place to park near the library but I had no luck so I decided to park BEHIND the bank and I'd walk to the library and do my banking on the way back to the car...While pulling into the bank I MISJUDGED the turn and hit most of the side of the van on a white post separating the 2 drive thru lanes at the bank. This bank lane is quite narrow..the was the first time since owning the van that I went to this bank.... I am still getting used to driving a minivan. I had the Audi Wagon for 5 years and nothing like that had ever happened....
I skipped the library and bank stop and I drove directly to the Mobil Station for advice..( this is all happening now 20 minutes before I'm due to pick Olivia up at school) ....they sent me to a local man that does body work...he was very close....he was available to take a peak (blessing) and he used a chemical and wiped off the "post paint marks " that made it look REALLY BAD....he needed to see what the scratch and dent really looked like without the white paint stuck to it....... It is wide..and long.......and expensive......I was feeling very discouraged...quietly cried.....wishing I could turn back time and re-negotiate the bank trip.......I pulled it together to go pick up Olivia...
We went to the play..it was really good.. we both enjoyed it. I missed Natalie being there. I think she would have liked it.
After the play we went to the grocery store to get milk. Olivia put her ballet clothes on in the van and I took her to ballet. My dear friend Chantal offered to drive Olivia home after ballet so I could head home and relieve Diana from childcare. Chantal does NOT live nearby. She lives in Stockbridge so this is way out of her way.
I arrived home and I was happy it was a warm house. Bob was soundly sleeping. Diana went home. Natalie took her bath while I organized dinner....Olivia came home....
Chantal said Olivia sat out of ballet feeling sick...achey, chilled.........after hopping into the house from Chantals car she ate her ENTIRE dinner....and she said she thought she should have a pan next to the bed in case she threw up....Bob gets sick quite a bit at this point..... I do think this must be a form of Sympathy Pain that Olivia has for daddy. I know nothing about what Sympathy pain is and if it's is "real" however I am at a loss. This is SO not typical behavior for Olivia. Chantals girls said Olivia cried during ballet. She LOVES ballet.
A big challenge for me is "trying to figure it all out" ...I find this part so intense......It reminds me of when the girls were babies and they'd have a time when they were crying and carrying on and I knew "something was wrong" but I already did all I COULD do or all I KNEW to do....changed diaper, fed, held, rocked, burped, sang, bathed, and they still fussed.... WHY? I'm a mom...I'm "supposed" to know right???? Thats the deal... we are SUPPOSED to know!
WHERE "S THE FLIPPIN' MANUAL?
Shouldn't kids come with a darn manual...cars come with a manual and they are so much less important!!!! (: A light comes on when something is wrong that needs attention....THAT's what needs to happen for parents! A light needs to appear on our children to indicate where the issue is!
I talk to the girls about "asking for attention" when they need it...instead of whining and acting out...just ask..use your words.....and I have to say it has worked in the past......so is this a need for attention?
I'm not sure what is going on...I have to think that the length of this illness and now having Bob home daily is heavy on their little hearts. He's their "dad" and he is so sick. His condition is hard for adults to see ...I can't imagine what it's like for them.
Sadness? Stress? Worry? Fear? Anger? Insecurity? Growing pains? Reacting to my stress? I'm sure it's a blend of all. So what do I do? I ask for help...I receive help....I let the house go and I go to bed early...I have people cooking for me quite often....I do my best to make our lives as normal as possible but the reality is none of this is normal.
Major things have been happening...most prominently Bob's sickness....however tucked in the midst have been "normal" life challenges...
All of this detective work is in the midst of my very own high degree of turmoil and just plain daily life which seems to be in a concentrated version and accelerated at the moment! I think of the cartoon you may recall of someone "dodging bullets".....that's how i feel....repeatedly dodging.
We have been so blessed with wonderful people around us supporting us. For that I am so grateful.
Going to bed and hoping and praying tomorrow is an improvement on many levels.
The heat is fixed now....Bob said he was told there was a furnace clog which is why there was no heat....... ever heard of that one???? laughing...sort of!
I'll apologize now for sounding pessimistic however a furnace clog makes me wonder if the oil company (we are on auto refill) let the oil get too low and the sludge from the bottom got into the lines....hmmmm...now THAT makes sense to me....BUT It's not my specialty now is it!!!!!! If it were my car and there was a "clog in the line" they would tell me that I LET THE GAS GET TO LOW...wouldn't they ????
Today was a very difficult day. I've struggled with writing about it but I do feel this is all "part" of the situation and is a huge "part" of how the Doerr Family is doing. I'll simply say it's starting to take it's toll.
After waking up with no heat....though I did heat up a small bathroom so we could all get dressed...Natalie proceeded to have a very tough morning. ( I was supposed to pick up both girls early to go see a musical called Laura Ingalls Wilder at the Colonial Theatre. It was a performance advertised for school trips.....our school wasn't going and I have had my eye on this play since last year....I was happy it was coming to Pittsfield this year.....last year it was at Proctors near Albany) The tickets were purchased quite some time ago.
During our morning routine it became clear that Natalie was not up for the play....(I assumed she was overtired even though she seems to be getting plenty of sleep...I keep the girls on a predictable schedule.... although the time did change.....Natalie yawned about 7 times on the way to school)......
I made several phone calls ..folks I could call before 7am.....I was looking for an afternoon sitter to sit with Natalie while she slept so Olivia and I could still go to the play. Olivia LOVES Little House books...Our dear friend Diana agreed to come relieve my mom at 1pm so mom could head home. Mom has been here since early Sunday when she came at noon to help me get my car to the dealer..then she stayed through Monday while we went to NYC.....she has been here in the midst of taking meds for her sinus infection so she hasn't felt her "best".
After leaving the girls off at school mom drove me to pick up the Sienna (at dealer since Sunday getting radio and heating fan fixed......both were supposed to be covered by warranty and extended warranty...however low and behold there was a $50 deductable. SURPRISE....it was explained that with extended warranties there is always a deductable..REALLY...first they've mentioned it...it's amazing it's not mentioned when it's sold!!!!!! Anyway --paid it and left.
I parked the Sienna in Lenox for a couple hours while mom and I did errands ....we used moms car and took Chloe to the vet for her vaccination....did a few more errands...went back to Lenox to pick up Natalie....then mom took me to the Community Center to get the Sienna....from there I was heading to the library and the bank before pick up....I had a full 1/2 hour before picking Olivia up at noon.....mom took Natalie home to get her to sleep and she also took Chloe home.....Chloe had shots this morning. She was definitely tired.
I drove around the Lenox block (complete with much road work) 2 times looking for a place to park near the library but I had no luck so I decided to park BEHIND the bank and I'd walk to the library and do my banking on the way back to the car...While pulling into the bank I MISJUDGED the turn and hit most of the side of the van on a white post separating the 2 drive thru lanes at the bank. This bank lane is quite narrow..the was the first time since owning the van that I went to this bank.... I am still getting used to driving a minivan. I had the Audi Wagon for 5 years and nothing like that had ever happened....
I skipped the library and bank stop and I drove directly to the Mobil Station for advice..( this is all happening now 20 minutes before I'm due to pick Olivia up at school) ....they sent me to a local man that does body work...he was very close....he was available to take a peak (blessing) and he used a chemical and wiped off the "post paint marks " that made it look REALLY BAD....he needed to see what the scratch and dent really looked like without the white paint stuck to it....... It is wide..and long.......and expensive......I was feeling very discouraged...quietly cried.....wishing I could turn back time and re-negotiate the bank trip.......I pulled it together to go pick up Olivia...
We went to the play..it was really good.. we both enjoyed it. I missed Natalie being there. I think she would have liked it.
After the play we went to the grocery store to get milk. Olivia put her ballet clothes on in the van and I took her to ballet. My dear friend Chantal offered to drive Olivia home after ballet so I could head home and relieve Diana from childcare. Chantal does NOT live nearby. She lives in Stockbridge so this is way out of her way.
I arrived home and I was happy it was a warm house. Bob was soundly sleeping. Diana went home. Natalie took her bath while I organized dinner....Olivia came home....
Chantal said Olivia sat out of ballet feeling sick...achey, chilled.........after hopping into the house from Chantals car she ate her ENTIRE dinner....and she said she thought she should have a pan next to the bed in case she threw up....Bob gets sick quite a bit at this point..... I do think this must be a form of Sympathy Pain that Olivia has for daddy. I know nothing about what Sympathy pain is and if it's is "real" however I am at a loss. This is SO not typical behavior for Olivia. Chantals girls said Olivia cried during ballet. She LOVES ballet.
A big challenge for me is "trying to figure it all out" ...I find this part so intense......It reminds me of when the girls were babies and they'd have a time when they were crying and carrying on and I knew "something was wrong" but I already did all I COULD do or all I KNEW to do....changed diaper, fed, held, rocked, burped, sang, bathed, and they still fussed.... WHY? I'm a mom...I'm "supposed" to know right???? Thats the deal... we are SUPPOSED to know!
WHERE "S THE FLIPPIN' MANUAL?
Shouldn't kids come with a darn manual...cars come with a manual and they are so much less important!!!! (: A light comes on when something is wrong that needs attention....THAT's what needs to happen for parents! A light needs to appear on our children to indicate where the issue is!
I talk to the girls about "asking for attention" when they need it...instead of whining and acting out...just ask..use your words.....and I have to say it has worked in the past......so is this a need for attention?
I'm not sure what is going on...I have to think that the length of this illness and now having Bob home daily is heavy on their little hearts. He's their "dad" and he is so sick. His condition is hard for adults to see ...I can't imagine what it's like for them.
Sadness? Stress? Worry? Fear? Anger? Insecurity? Growing pains? Reacting to my stress? I'm sure it's a blend of all. So what do I do? I ask for help...I receive help....I let the house go and I go to bed early...I have people cooking for me quite often....I do my best to make our lives as normal as possible but the reality is none of this is normal.
Major things have been happening...most prominently Bob's sickness....however tucked in the midst have been "normal" life challenges...
All of this detective work is in the midst of my very own high degree of turmoil and just plain daily life which seems to be in a concentrated version and accelerated at the moment! I think of the cartoon you may recall of someone "dodging bullets".....that's how i feel....repeatedly dodging.
We have been so blessed with wonderful people around us supporting us. For that I am so grateful.
The Serenity Prayer keeps coming to mind on a daily basis....
God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.
What is the difference...I know what I can't change...but what can I change...what needs changing...I'm unclear what to do to help the girls through this...I keep the lines of communication open...Natalie's a bit young to share her feelings directly but it seems Olivia has for the last 3 months since the diagnosis.....she asks questions when she needs to.. we don't hide things from them. We give information as gently as possible without lying.
......I can only hope that Bob turns the corner soon and starts improving. Maybe that is the answer for the girls to feel better... The doctor promised that would happen soon...that Bob would turn the corner soon.
......I can only hope that Bob turns the corner soon and starts improving. Maybe that is the answer for the girls to feel better... The doctor promised that would happen soon...that Bob would turn the corner soon.
I do not want to whine.... however I'm feeling overwhelmed today. This is all so much to balance....I'm confident I'm a great balancer... IF I know what the heck I'm balancing..if it's clear or "somewhat clear" what I'm faced with..but it seems that every day is a new adventure....I'm feeling worn out.
Going to bed and hoping and praying tomorrow is an improvement on many levels.
November 9, 2010 No Heat
Heat didn't come on when the power came on yesterday. It's 50 degrees in here....YIKES!
Monday, November 8, 2010
November 8, 2010 NYC for the day
Bob had a terrible night last night. He had so much mucus that he felt as though he couldn’t breathe at times. He gets nauseous and sick because of the mucus problem. It has continually gotten worse. He slept very little....of course finally went to sleep this morning then I had to wake him from a very sound sleep to get him moving. The doctors and nurses said very clearly at the visit following the final radiation treatment that through the next 1-2 weeks he would get/feel worse. After this difficult period each week he is expected to feel better in small increments. The reality of that clear prediction is a huge challenge and very frustrating for him. Luckily he sleeps a lot when he can.
Mom, the girls and I were up at 4:50..yes this is what happens to us when the time changes! I checked the weather first thing..as I always do....and low and behold ..started the day off with an adventure...today was the first official “Winter Storm Advisory” in the Berkshires. We awoke to light snow and sleet. The weather advisory was until noon. This begins the adventure.... Anyone who knows my mom KNOWS she does NOT drive in questionable weather .....ESPECIALLY with her precious grandchildren in her vehicle! Winter and traveling are not words she likes or uses in the same sentence! Her vehicle is NOT good on slippery roads.
This is the time of year that I’ll be able to say for certain if I like the Toyota Sienna AWD. If I had to be out in snow/sleet I LOVED the Audi Wagon. I didn’t care how old it was it was great in snow! Ice...well in my opinion ice is another story for all vehicles!
Thankfully our dear friends Al and Barb are up at the crack of dawn and I didn’t hesitate calling them at at 5:45! (: YES they are VERY good friends!!!! Don’t worry there aren’t many folks I’d call at that time!
I asked them if I could drive the girls to their house in Lenox and leave them off before leaving with Bob for our 8:25 train....I planned I could be at their house by 6:30 then go back to Alford pick up Bob and leave for Wassaic. At 8:25 they could take the girls to school. They were more than willing to do that however they went a step further and offered to pick the girls up at our house at 7:00am to save me the trip to Lenox. THANK YOU SOOO MUCH! Bob and I left at 7am to get to Wassaic in plenty of time. We were on our way.
By the time we arrived in Wassaic it was sleeting pretty hard. The roads were ok for most of the trip over. It was quite cold and windy....Bob was shivering..he has had chills for several days. I was glad to be there and have the car parked. I couldn’t wait for the train to arrive. We were dreaming about a space with heat!!!
Bob slept most of the way on the train. When we were about 1/2 hour from Grand Central he opened his eyes so I suggested he feed himself a can of food and his meds before the commotion of being IN the city starts. It’s very important that he continue to eat and take meds while “on the go”..if doesn’t keep his routine he plummets pretty quickly. I strategically leaned against the seat in front of me with my computer bag on my lap so he could have “some privacy..if that’s what you call sitting near the window on the Metro North pouring food into your feeding tube! Well, it worked! I was glad he was arriving in NY fed and recently medicated!
I ate something when we arrived at Grand Central. ( FYI..I have a hard time eating in front of Bob--feels strange to enjoy good food when he can’t! I also am SO appreciative of the food that our friends have delivered...this makes it so easy to feed the girls and I without making the house smell SO GOOD by the whole cooking process...I often heat the food that people provide in the microwave and by the time he comes to the kitchen he doesn’t even know WHAT we ate or probably WHEN we ate........the generosity and thoughtfulness of all the meals has truly been a blessing! My plan is to do Thank you notes in the very near future )
After I finished eating we caught the subway and we were at Beth Israel in plenty of time ....to wait and wait and wait and wait....Bob fell asleep..he could hardly keep his eyes open. He wanted to be home so badly.
We met with Dr. Culliney first (Medical Oncologist). He explained that the copious amounts of mucus is very normal. He GUARANTEES--YES he used that word----that the mucus will improve over the next week or two. Bob’s job continues to be TO SLEEP,EAT, REST, TAKE MEDS ON TIME, REST, SLEEP, you get the idea. They do want him to get 2 more cans of food in per day. He’s lost 20lbs overall but he’s not sad about that. The doctors are fine with it but they want to make sure that he is staying hydrated and nutritionally sound so his body can heal. The numbness in his foot is a side effect of Chemo. His blood pressure and pulse were a little high. He will start taking his blood pressure meds again soon. He has to make an appt with the Cardiologist to see if they will adjust his meds.
Immediately following Dr. Culliney’s appt we met with Dr. Harrison (Radiation Oncologist). At that time we also see Waleed who is another doctor in that office. Waleed has been another blessing for us. During our first appointment back in August he gave us his cell number along with his personal email. When we took the girls to Beth Israel --in August-- so they could see where daddy’s doctors are, Waleed wanted to make a point to meet them. He came as soon as I called to meet Olivia and Natalie. He sat with them and talked to them. He is so very kind! EVERY time I email him he gets back to me within 5 minutes. I’ve only had to email him about 4 times but each time my concerns were quickly eased. We look forward to meeting his wife and 6 month old baby. He may come to the Berkshires in the Spring with his family. I hope they will come.
Dr. Harrison looked in Bob’s throat...he checked it the best that he could with a tongue depressor. He said that “at this point” he sees no visible signs of cancer....HORRAY.....however he explained it is still very swollen and in 2 weeks they will do the scope to check things out. In January Bob will have another PET scan which will be more telling. Dr. Harrison and nurse Elyse are both happy with the progress and assure him he’ll be turning the corner soon!
They reiterated his JOB is to REST, SLEEP, TAKE MEDS ON TIME, INCREASE FOOD, and Waleed taught him how to practice swallowing liquid again ...TINY little sips swallowed VERY SLOWLY...he did it two times in the office so his new homework is to do that everyday as much as possible. Bob has not been swallowing by mouth because he has been aspirating even small amounts of water....it goes up his nose...so hopefully Waleed helped to solve this problem and move his swallowing process along. TINY amounts VERY slowly!
So after our good byes and hugs, as we were leaving Bob ran into a woman who had the same cancer. They met at the Hope Lodge. She is 2 weeks ahead of Bob. She explained that the 2 weeks following her last radiation WERE AWFUL! Here she is 2 weeks later and she said she has good days and bad HOWEVER the mucus is SOOOOOOO much better! Horray! Then he ran into someone that he knew and he is 1 month ahead of him who said the same thing. I’m so glad Bob stayed at Hope Lodge for some of the time or he may not have met these people going through similar battles.
So...we are leaving NY once again feeling hopeful that a corner will be turned soon!
After getting prescriptions filled back to the subway to Grand Central. To CRUMBS the cupcake store to get a “Pinkalicious” cupcake for the girls, food court for Tonya’s food then we boarded the train early. I ate. Bob ate and here we are. I’m typing this in a word document HOPING that when I get to the blog I can copy and paste it...I sure do hope it works!
Now while Bob and I have been in NY...our house lost power for 2 hours in Alford, the phone was out.....started getting cold so she lit a fire thinking the flu was still open from last night --BUT I CLOSED IT FIRST THING THIS MORNING BECAUSE OF THE WIND---YES smoke throughout the house! Not smooth sailing today! To simplify matters Al brought the girls home after school. They are all safe and sound. The power is now on...which means the heat is on.....the phone is working....I explained the flu and said she could try again and she laughed and said there has been PLENTY of excitement for one day and no she wasn’t taking any chances!
My hope is we’ll be home by 7:00pm and i”ll be in bed by 7:30! laughing!
We are all going to sleep well tonight!
UPDATE...it's 7:10...mom did light a fire!!!! Not only did she light a fire it's a GREAT fire..I knew the Girl Scout in her would shine through (: ..HORRAY.....going to read to the girls then relax by the fire! I'm already showered and in my PJ's...AHHHHH so good to be home. I can't move Bob from being in front of the fire...(: signing off...Good Night!
Mom, the girls and I were up at 4:50..yes this is what happens to us when the time changes! I checked the weather first thing..as I always do....and low and behold ..started the day off with an adventure...today was the first official “Winter Storm Advisory” in the Berkshires. We awoke to light snow and sleet. The weather advisory was until noon. This begins the adventure.... Anyone who knows my mom KNOWS she does NOT drive in questionable weather .....ESPECIALLY with her precious grandchildren in her vehicle! Winter and traveling are not words she likes or uses in the same sentence! Her vehicle is NOT good on slippery roads.
This is the time of year that I’ll be able to say for certain if I like the Toyota Sienna AWD. If I had to be out in snow/sleet I LOVED the Audi Wagon. I didn’t care how old it was it was great in snow! Ice...well in my opinion ice is another story for all vehicles!
Thankfully our dear friends Al and Barb are up at the crack of dawn and I didn’t hesitate calling them at at 5:45! (: YES they are VERY good friends!!!! Don’t worry there aren’t many folks I’d call at that time!
I asked them if I could drive the girls to their house in Lenox and leave them off before leaving with Bob for our 8:25 train....I planned I could be at their house by 6:30 then go back to Alford pick up Bob and leave for Wassaic. At 8:25 they could take the girls to school. They were more than willing to do that however they went a step further and offered to pick the girls up at our house at 7:00am to save me the trip to Lenox. THANK YOU SOOO MUCH! Bob and I left at 7am to get to Wassaic in plenty of time. We were on our way.
By the time we arrived in Wassaic it was sleeting pretty hard. The roads were ok for most of the trip over. It was quite cold and windy....Bob was shivering..he has had chills for several days. I was glad to be there and have the car parked. I couldn’t wait for the train to arrive. We were dreaming about a space with heat!!!
Bob slept most of the way on the train. When we were about 1/2 hour from Grand Central he opened his eyes so I suggested he feed himself a can of food and his meds before the commotion of being IN the city starts. It’s very important that he continue to eat and take meds while “on the go”..if doesn’t keep his routine he plummets pretty quickly. I strategically leaned against the seat in front of me with my computer bag on my lap so he could have “some privacy..if that’s what you call sitting near the window on the Metro North pouring food into your feeding tube! Well, it worked! I was glad he was arriving in NY fed and recently medicated!
I ate something when we arrived at Grand Central. ( FYI..I have a hard time eating in front of Bob--feels strange to enjoy good food when he can’t! I also am SO appreciative of the food that our friends have delivered...this makes it so easy to feed the girls and I without making the house smell SO GOOD by the whole cooking process...I often heat the food that people provide in the microwave and by the time he comes to the kitchen he doesn’t even know WHAT we ate or probably WHEN we ate........the generosity and thoughtfulness of all the meals has truly been a blessing! My plan is to do Thank you notes in the very near future )
After I finished eating we caught the subway and we were at Beth Israel in plenty of time ....to wait and wait and wait and wait....Bob fell asleep..he could hardly keep his eyes open. He wanted to be home so badly.
We met with Dr. Culliney first (Medical Oncologist). He explained that the copious amounts of mucus is very normal. He GUARANTEES--YES he used that word----that the mucus will improve over the next week or two. Bob’s job continues to be TO SLEEP,EAT, REST, TAKE MEDS ON TIME, REST, SLEEP, you get the idea. They do want him to get 2 more cans of food in per day. He’s lost 20lbs overall but he’s not sad about that. The doctors are fine with it but they want to make sure that he is staying hydrated and nutritionally sound so his body can heal. The numbness in his foot is a side effect of Chemo. His blood pressure and pulse were a little high. He will start taking his blood pressure meds again soon. He has to make an appt with the Cardiologist to see if they will adjust his meds.
Immediately following Dr. Culliney’s appt we met with Dr. Harrison (Radiation Oncologist). At that time we also see Waleed who is another doctor in that office. Waleed has been another blessing for us. During our first appointment back in August he gave us his cell number along with his personal email. When we took the girls to Beth Israel --in August-- so they could see where daddy’s doctors are, Waleed wanted to make a point to meet them. He came as soon as I called to meet Olivia and Natalie. He sat with them and talked to them. He is so very kind! EVERY time I email him he gets back to me within 5 minutes. I’ve only had to email him about 4 times but each time my concerns were quickly eased. We look forward to meeting his wife and 6 month old baby. He may come to the Berkshires in the Spring with his family. I hope they will come.
Dr. Harrison looked in Bob’s throat...he checked it the best that he could with a tongue depressor. He said that “at this point” he sees no visible signs of cancer....HORRAY.....however he explained it is still very swollen and in 2 weeks they will do the scope to check things out. In January Bob will have another PET scan which will be more telling. Dr. Harrison and nurse Elyse are both happy with the progress and assure him he’ll be turning the corner soon!
They reiterated his JOB is to REST, SLEEP, TAKE MEDS ON TIME, INCREASE FOOD, and Waleed taught him how to practice swallowing liquid again ...TINY little sips swallowed VERY SLOWLY...he did it two times in the office so his new homework is to do that everyday as much as possible. Bob has not been swallowing by mouth because he has been aspirating even small amounts of water....it goes up his nose...so hopefully Waleed helped to solve this problem and move his swallowing process along. TINY amounts VERY slowly!
So after our good byes and hugs, as we were leaving Bob ran into a woman who had the same cancer. They met at the Hope Lodge. She is 2 weeks ahead of Bob. She explained that the 2 weeks following her last radiation WERE AWFUL! Here she is 2 weeks later and she said she has good days and bad HOWEVER the mucus is SOOOOOOO much better! Horray! Then he ran into someone that he knew and he is 1 month ahead of him who said the same thing. I’m so glad Bob stayed at Hope Lodge for some of the time or he may not have met these people going through similar battles.
So...we are leaving NY once again feeling hopeful that a corner will be turned soon!
After getting prescriptions filled back to the subway to Grand Central. To CRUMBS the cupcake store to get a “Pinkalicious” cupcake for the girls, food court for Tonya’s food then we boarded the train early. I ate. Bob ate and here we are. I’m typing this in a word document HOPING that when I get to the blog I can copy and paste it...I sure do hope it works!
Now while Bob and I have been in NY...our house lost power for 2 hours in Alford, the phone was out.....started getting cold so she lit a fire thinking the flu was still open from last night --BUT I CLOSED IT FIRST THING THIS MORNING BECAUSE OF THE WIND---YES smoke throughout the house! Not smooth sailing today! To simplify matters Al brought the girls home after school. They are all safe and sound. The power is now on...which means the heat is on.....the phone is working....I explained the flu and said she could try again and she laughed and said there has been PLENTY of excitement for one day and no she wasn’t taking any chances!
My hope is we’ll be home by 7:00pm and i”ll be in bed by 7:30! laughing!
We are all going to sleep well tonight!
UPDATE...it's 7:10...mom did light a fire!!!! Not only did she light a fire it's a GREAT fire..I knew the Girl Scout in her would shine through (: ..HORRAY.....going to read to the girls then relax by the fire! I'm already showered and in my PJ's...AHHHHH so good to be home. I can't move Bob from being in front of the fire...(: signing off...Good Night!
November 8, 2010 NYC for the day
Bob had a terrible night last night. He had so much mucus that he felt as though he couldn’t breathe at times. He gets nauseous and sick because of the mucus problem. It has continually gotten worse. He slept very little....of course finally went to sleep this morning then I had to wake him from a very sound sleep to get him moving. The doctors and nurses said very clearly at the visit following the final radiation treatment that through the next 1-2 weeks he would get/feel worse. After this difficult period each week he will feel better in small increments. The reality of that clear prediction is a huge challenge and very frustrating for him. Luckily he sleeps alot.
Mom, the girls and I were up at 4:50..yes this is what happens to us when the time changes! I checked the weather first thing..as I always do....and low and behold ..started the day off with an adventure...today was the first official “Winter Storm Advisory” in the Berkshires. We awoke to light snow and sleet. The weather advisory was until noon. This begins the adventure.... Anyone who knows my mom KNOWS she does NOT drive in questionable weather .....ESPECIALLY with her precious grandchildren in her vehicle! Winter and traveling are not words she likes or uses in the same sentence! Her vehicle is NOT good on slippery roads.
This is the time of year that I’ll be able to say for certain if I like the Toyota Sienna AWD. If I had to be out in snow/sleet I LOVED the Audi Wagon. I didn’t care how old it was it was great in snow! Ice...well in my opinion ice is another story for all vehicles!
Thankfully our dear friends Al and Barb are up at the crack of dawn and I didn’t hesitate calling them at at 5:45! (: YES they are VERY good friends!!!! Don’t worry there aren’t many folks I’d call at that time!
I asked them if I could drive the girls to their house in Lenox and leave them off before leaving with Bob for our 8:25 train....I planned I could be at their house by 6:30 then go back to Alford pick up Bob and leave for Wassaic. At 8:25 they could take the girls to school. They were more than willing to do that however they went a step further and offered to pick the girls up at our house at 7:00am to save me the trip to Lenox. THANK YOU SOOO MUCH! Bob and I left at 7am to get to Wassaic in plenty of time. We were on our way.
By the time we arrived in Wassaic it was sleeting pretty hard. The roads were ok for most of the trip over. It was quite cold and windy....Bob was shivering..he has had chills for several days. I was glad to be there and have the car parked. I couldn’t wait for the train to arrive. We were dreaming about a space with heat!!!
Bob slept most of the way on the train. When we were about 1/2 hour from Grand Central he opened his eyes so I suggested he feed himself a can of food and his meds before the commotion of being IN the city starts. It’s very important that he continue to eat and take meds while “on the go”..if doesn’t keep his routine he plummets pretty quickly. I strategically leaned against the seat in front of me with my computer bag on my lap so he could have “some privacy..if that’s what you call sitting near the window on the Metro North pouring food into your feeding tube! Well, it worked! I was glad he was arriving in NY fed and recently medicated!
I ate something when we arrived at Grand Central. ( FYI..I have a hard time eating in front of Bob--feels strange to enjoy good food when he can’t! I also am SO appreciative of the food that our friends have delivered...this makes it so easy to feed the girls and I without making the house smell SO GOOD by the whole cooking process...I often heat the food that people provide in the microwave and by the time he comes to the kitchen he doesn’t even know WHAT we ate or probably WHEN we ate........the generosity and thoughtfulness of all the meals has truly been a blessing! My plan is to do Thank you notes in the very near future )
After I finished eating we caught the subway and we were at Beth Israel in plenty of time ....to wait and wait and wait and wait....Bob fell asleep..he could hardly keep his eyes open. He wanted to be home so badly.
We met with Dr. Culliney first (Medical Oncologist). He explained that the copious amounts of mucus is very normal. He GUARANTEES--YES he used that word----that the mucus will improve over the next week or two. Bob’s job continues to be TO SLEEP,EAT, REST, TAKE MEDS ON TIME, REST, SLEEP, you get the idea. They do want him to get 2 more cans of food in per day. He’s lost 20lbs overall but he’s not sad about that. The doctors are fine with it but they want to make sure that he is staying hydrated and nutritionally sound so his body can heal. The numbness in his food is a side effect of Chemo. His blood pressure and pulse was a little high. He will start taking his blood pressure meds again soon. He has to make an appt with the Cardiologist to see if they will adjust his meds.
Immediately following Dr. Culliney’s appt we met with Dr. Harrison (Radiation Oncologist). At that time we also see Waleed who is another doctor in that office. Waleed has been another blessing for us. During our first appointment back in August he gave us his cell number along with his personal email. When we took the girls to Beth Israel --in August-- so they could see where daddy’s doctors are, Waleed wanted to make a point to meet them. He came as soon as I called to meet Olivia and Natalie. He sat with them and talked to them. He is so very kind! EVERY time I email him he gets back to me within 5 minutes. I’ve only had to email him about 4 times but each time my concerns were quickly eased. We look forward to meeting his wife and 6 month old baby. He may come to the Berkshires in the Spring with his family. I hope they will come.
Dr. Harrison looked in Bob’s throat...he checked it the best that he could with a tongue depressor. He said that “at this point” he sees no visible signs of cancer....HORRAY.....however he explained it is still very swollen and in 2 weeks they will do the scope to check things out. In January Bob will have another PET scan which will be more telling. Dr. Harrison and nurse Elyse are both happy with the progress and assure him he’ll be turning the corner soon!
They reiterated his JOB is to REST, SLEEP, TAKE MEDS ON TIME, INCREASE FOOD, and Waleed taught him how to practice swallowing liquid again ...TINY little sips swallowed VERY SLOWLY...he did it two times in the office so his new homework is to do that everyday as much as possible. Bob has not been swallowing by mouth because he has been aspirating even small amounts of water....it goes up his nose...so hopefully Waleed helped to solve this problem and move his swallowing process along. TINY amounts VERY slowly!
So after our good byes and hugs, as we were leaving Bob ran into a woman who had the same cancer. They met at the Hope Lodge. She is 2 weeks ahead of Bob. She explained that the 2 weeks following her last radiation WERE AWFUL! Here she is 2 weeks later and she said she has good days and bad HOWEVER the mucus is SOOOOOOO much better! Horray! Then he ran into someone that he knew and he is 1 month ahead of him who said the same thing. I’m so glad Bob stayed at Hope Lodge for some of the time or he may not have met these people going through similar battles.
So...we are leaving NY once again feeling hopeful that a corner will be turned soon!
After getting prescriptions filled back to the subway to Grand Central. To CRUMBS the cupcake store to get a “Pinkalicious” cupcake for the girls, food court for Tonya’s food then we boarded the train early. I ate. Bob ate and here we are. I’m typing this in a word document HOPING that when I get to the blog I can copy and paste it...I sure do hope it works!
Now while Bob and I have been in NY...our house lost power for 2 hours in Alford, the phone was out.....started getting cold so she lit a fire thinking the flu was still open from last night --BUT I CLOSED IT FIRST THING THIS MORNING BECAUSE OF THE WIND---YES smoke throughout the house! Not smooth sailing today! To simplify matters Al brought the girls home after school. They are all safe and sound. The power is now on...which means the heat is on.....the phone is working....I explained the flu and said she could try again and she laughed and said there has been PLENTY of excitement for one day and no she wasn’t taking any chances!
My hope is we’ll be home by 7:00pm and i”ll be in bed by 7:30! laughing!
We are all going to sleep well tonight!
UPDATE...it's 7:10...mom did light a fire!!!! ..HORRAY..going to read to the girls then relax by the fire! I'm already showered and in my PJ's...AHHHHH so good to be home. I can't move Bob from in front of the fire...(: signing off...Good Night!
Mom, the girls and I were up at 4:50..yes this is what happens to us when the time changes! I checked the weather first thing..as I always do....and low and behold ..started the day off with an adventure...today was the first official “Winter Storm Advisory” in the Berkshires. We awoke to light snow and sleet. The weather advisory was until noon. This begins the adventure.... Anyone who knows my mom KNOWS she does NOT drive in questionable weather .....ESPECIALLY with her precious grandchildren in her vehicle! Winter and traveling are not words she likes or uses in the same sentence! Her vehicle is NOT good on slippery roads.
This is the time of year that I’ll be able to say for certain if I like the Toyota Sienna AWD. If I had to be out in snow/sleet I LOVED the Audi Wagon. I didn’t care how old it was it was great in snow! Ice...well in my opinion ice is another story for all vehicles!
Thankfully our dear friends Al and Barb are up at the crack of dawn and I didn’t hesitate calling them at at 5:45! (: YES they are VERY good friends!!!! Don’t worry there aren’t many folks I’d call at that time!
I asked them if I could drive the girls to their house in Lenox and leave them off before leaving with Bob for our 8:25 train....I planned I could be at their house by 6:30 then go back to Alford pick up Bob and leave for Wassaic. At 8:25 they could take the girls to school. They were more than willing to do that however they went a step further and offered to pick the girls up at our house at 7:00am to save me the trip to Lenox. THANK YOU SOOO MUCH! Bob and I left at 7am to get to Wassaic in plenty of time. We were on our way.
By the time we arrived in Wassaic it was sleeting pretty hard. The roads were ok for most of the trip over. It was quite cold and windy....Bob was shivering..he has had chills for several days. I was glad to be there and have the car parked. I couldn’t wait for the train to arrive. We were dreaming about a space with heat!!!
Bob slept most of the way on the train. When we were about 1/2 hour from Grand Central he opened his eyes so I suggested he feed himself a can of food and his meds before the commotion of being IN the city starts. It’s very important that he continue to eat and take meds while “on the go”..if doesn’t keep his routine he plummets pretty quickly. I strategically leaned against the seat in front of me with my computer bag on my lap so he could have “some privacy..if that’s what you call sitting near the window on the Metro North pouring food into your feeding tube! Well, it worked! I was glad he was arriving in NY fed and recently medicated!
I ate something when we arrived at Grand Central. ( FYI..I have a hard time eating in front of Bob--feels strange to enjoy good food when he can’t! I also am SO appreciative of the food that our friends have delivered...this makes it so easy to feed the girls and I without making the house smell SO GOOD by the whole cooking process...I often heat the food that people provide in the microwave and by the time he comes to the kitchen he doesn’t even know WHAT we ate or probably WHEN we ate........the generosity and thoughtfulness of all the meals has truly been a blessing! My plan is to do Thank you notes in the very near future )
After I finished eating we caught the subway and we were at Beth Israel in plenty of time ....to wait and wait and wait and wait....Bob fell asleep..he could hardly keep his eyes open. He wanted to be home so badly.
We met with Dr. Culliney first (Medical Oncologist). He explained that the copious amounts of mucus is very normal. He GUARANTEES--YES he used that word----that the mucus will improve over the next week or two. Bob’s job continues to be TO SLEEP,EAT, REST, TAKE MEDS ON TIME, REST, SLEEP, you get the idea. They do want him to get 2 more cans of food in per day. He’s lost 20lbs overall but he’s not sad about that. The doctors are fine with it but they want to make sure that he is staying hydrated and nutritionally sound so his body can heal. The numbness in his food is a side effect of Chemo. His blood pressure and pulse was a little high. He will start taking his blood pressure meds again soon. He has to make an appt with the Cardiologist to see if they will adjust his meds.
Immediately following Dr. Culliney’s appt we met with Dr. Harrison (Radiation Oncologist). At that time we also see Waleed who is another doctor in that office. Waleed has been another blessing for us. During our first appointment back in August he gave us his cell number along with his personal email. When we took the girls to Beth Israel --in August-- so they could see where daddy’s doctors are, Waleed wanted to make a point to meet them. He came as soon as I called to meet Olivia and Natalie. He sat with them and talked to them. He is so very kind! EVERY time I email him he gets back to me within 5 minutes. I’ve only had to email him about 4 times but each time my concerns were quickly eased. We look forward to meeting his wife and 6 month old baby. He may come to the Berkshires in the Spring with his family. I hope they will come.
Dr. Harrison looked in Bob’s throat...he checked it the best that he could with a tongue depressor. He said that “at this point” he sees no visible signs of cancer....HORRAY.....however he explained it is still very swollen and in 2 weeks they will do the scope to check things out. In January Bob will have another PET scan which will be more telling. Dr. Harrison and nurse Elyse are both happy with the progress and assure him he’ll be turning the corner soon!
They reiterated his JOB is to REST, SLEEP, TAKE MEDS ON TIME, INCREASE FOOD, and Waleed taught him how to practice swallowing liquid again ...TINY little sips swallowed VERY SLOWLY...he did it two times in the office so his new homework is to do that everyday as much as possible. Bob has not been swallowing by mouth because he has been aspirating even small amounts of water....it goes up his nose...so hopefully Waleed helped to solve this problem and move his swallowing process along. TINY amounts VERY slowly!
So after our good byes and hugs, as we were leaving Bob ran into a woman who had the same cancer. They met at the Hope Lodge. She is 2 weeks ahead of Bob. She explained that the 2 weeks following her last radiation WERE AWFUL! Here she is 2 weeks later and she said she has good days and bad HOWEVER the mucus is SOOOOOOO much better! Horray! Then he ran into someone that he knew and he is 1 month ahead of him who said the same thing. I’m so glad Bob stayed at Hope Lodge for some of the time or he may not have met these people going through similar battles.
So...we are leaving NY once again feeling hopeful that a corner will be turned soon!
After getting prescriptions filled back to the subway to Grand Central. To CRUMBS the cupcake store to get a “Pinkalicious” cupcake for the girls, food court for Tonya’s food then we boarded the train early. I ate. Bob ate and here we are. I’m typing this in a word document HOPING that when I get to the blog I can copy and paste it...I sure do hope it works!
Now while Bob and I have been in NY...our house lost power for 2 hours in Alford, the phone was out.....started getting cold so she lit a fire thinking the flu was still open from last night --BUT I CLOSED IT FIRST THING THIS MORNING BECAUSE OF THE WIND---YES smoke throughout the house! Not smooth sailing today! To simplify matters Al brought the girls home after school. They are all safe and sound. The power is now on...which means the heat is on.....the phone is working....I explained the flu and said she could try again and she laughed and said there has been PLENTY of excitement for one day and no she wasn’t taking any chances!
My hope is we’ll be home by 7:00pm and i”ll be in bed by 7:30! laughing!
We are all going to sleep well tonight!
UPDATE...it's 7:10...mom did light a fire!!!! ..HORRAY..going to read to the girls then relax by the fire! I'm already showered and in my PJ's...AHHHHH so good to be home. I can't move Bob from in front of the fire...(: signing off...Good Night!
Sunday, November 7, 2010
November 8, 2010
I can't believe that the last time I wrote was 6 days ago. Sorry about that....time goes so fast!
Bob had a decent week. He sleeps alot..which is what he is supposed to be doing. I'd say the thing that annoys him the most is the amount of mucous. It makes talking and attempting to eat anything---even sips of water---difficult if not impossible. He still only uses the feeding tube. I remind him that the doctors did say that for 1-2 weeks he would feel "worse" then make weekly improvements. It has been 13 days since his last radiation treatment. Here is hoping it's uphill from here.
Today is the day we travel to NYC for 2 doctor appts. These appointments are basically "check ups" and an opportunity to ask questions and get new scripts if needed.
Bob had a decent week. He sleeps alot..which is what he is supposed to be doing. I'd say the thing that annoys him the most is the amount of mucous. It makes talking and attempting to eat anything---even sips of water---difficult if not impossible. He still only uses the feeding tube. I remind him that the doctors did say that for 1-2 weeks he would feel "worse" then make weekly improvements. It has been 13 days since his last radiation treatment. Here is hoping it's uphill from here.
Today is the day we travel to NYC for 2 doctor appts. These appointments are basically "check ups" and an opportunity to ask questions and get new scripts if needed.
Tuesday, November 2, 2010
November 2, 2010
quick update...I have a bunch of things to do and i could easily go to sleep right NOW! (:
Yesterday was a pretty good day for Bob...he even looked a bit better...a bit more color in his face. Today was not a great day....clearly he felt worse throughout the day. Tonight he feels chilled and is sleeping again. He slept most of the day. I'm sure it's normal for energy to come and go. He's still on a lot of medicine.
I took him around noon to vote. I know he liked getting out even if it was a short time.
That's all for now.....
Yesterday was a pretty good day for Bob...he even looked a bit better...a bit more color in his face. Today was not a great day....clearly he felt worse throughout the day. Tonight he feels chilled and is sleeping again. He slept most of the day. I'm sure it's normal for energy to come and go. He's still on a lot of medicine.
I took him around noon to vote. I know he liked getting out even if it was a short time.
That's all for now.....
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