Hi Everyone,
Dad just handed off the baton to me so I'll be with Mom until Friday. Nothing much has happened the past couple of days. Mom was pretty sick to her stomach yesterday so she laid pretty low.
Mom has another appointment at the clinic bright and early tomorrow. Hopefully her numbers are good and she doesn't need any transfusions or supplements, but we'll update you on that when we get back.
Sorry we haven't had much to report. Hope you are all well!
Love,
Amy
Wednesday, September 29, 2010
Monday, September 27, 2010
Day 62- ( 7 in Course 2)
Hi - Sorry this is a little late. Today was pretty busy. Rita felt a little weak and dizzy this morning so when we got over to the clinic, we found out that her hemoglobin was a little low. Totally normal for her treatment and just required that she get 2 units of red blood cells. That took about 4.5 hours and while she was gettig tohse, I moved us into our new room. It is much more convenient with a kitchen area and living area separate from the bedroom. That will help Amy & I when we work and Rita wants to rest. Everything is good this evening and Rita is looking forward to a couple of quiet days. She does have plans to visit the exersize room each day and to try to maintain or even increase her strength. I will, of course, encourage her and take the one-eyed glare with the comfort that the excersize will only help her beat this thing.
That's it for tonight. Thanks to all for everything you continue to do to help us - especially the prayers.
Goodnight, Dave
That's it for tonight. Thanks to all for everything you continue to do to help us - especially the prayers.
Goodnight, Dave
Sunday, September 26, 2010
Day 61(Day 6 Course 2)
Hi Everyone,
It is so good to be here in Buffalo with Rita. She seems to be getting stronger every day. Two weeks ago, she could not walk with her walker to the clinic from the car. Now, she is motoring around the room and she even did eight minutes on the stationary bike today - up from 5.5 yesterday. She is eating better and drinking more fluids. Pills and potASSium are still problematic. We all hope that she can continue to get stronger even though we know that she will be going into a through again in the next few weeks. That is an expected result from the chemo. We will do our best to keep her free of infection. That may mean limiting visits again and if so, we'll let you know. It will depend on her numbers and what the doctors tell us. We are looking forward to our move tomorrow to a bigger room so that Rita can have "quiet time" when she needs it and we (Amy & I) can get our work done. That's it for tonight - more tomorrow.
Love, Dave
It is so good to be here in Buffalo with Rita. She seems to be getting stronger every day. Two weeks ago, she could not walk with her walker to the clinic from the car. Now, she is motoring around the room and she even did eight minutes on the stationary bike today - up from 5.5 yesterday. She is eating better and drinking more fluids. Pills and potASSium are still problematic. We all hope that she can continue to get stronger even though we know that she will be going into a through again in the next few weeks. That is an expected result from the chemo. We will do our best to keep her free of infection. That may mean limiting visits again and if so, we'll let you know. It will depend on her numbers and what the doctors tell us. We are looking forward to our move tomorrow to a bigger room so that Rita can have "quiet time" when she needs it and we (Amy & I) can get our work done. That's it for tonight - more tomorrow.
Love, Dave
Saturday, September 25, 2010
day 60... can you believe it?! (course 2 day 5)
it's hard to imagine that we are on our 60th day of treatment.. and 64 days ago none of this was even a thought.. i mean, mom knew something was wrong because of the blood tests.. but not this.. we couldn't have imagined this... so here we are.. making bathroom dinners, taking way too many horse pills, and trying to convince mom that potASSium is good for her.. she now calls it asshole juice. nice, eh?
so mom had a really good day today.. we moved very slowly, didn't rush around this morning and ended up taking our day trip to wegmans. they must have been running some great one day sales (which we could never find..) because i think about 75% of the population of buffalo was in that particular wegmans, and the other 25% were out for their mid-afternoon saturday drives.. not annoying at all to dad...
we got an interesting shopping cart with half of a bench attached so we could push mom and the cart around at the same time.. in theory, this was a great idea, but because of the volume of traffic in each aisle looking for the great sales.. it was kind of a fun experience.... we had to try to occupy aisles that only like 1 other person was in and then run to the other aisles looking for stuff... which mom didn't like because she wanted to see what brands were on sale.. anyways.. three hours later, we checked out and were on our way home. it was a fun day out.. mom was happy to be in a grocery store looking for bargains!
she took a power nap when we got home and then we went to the fitness center where she rode the exercise bike for 51/2 minutes! pretty good for her first try.. tomorrow she said she's doing 8.
we just finished our bathroom dinner... pan seared pork chops on our double burner, rice cooker mashed potatoes (might be the best ever mom said..) steamed corn and cinnamon applesauce. everything came out delicious and mom was so excited she ate everything off her plate, asked for a teaspoon more potatoes and applesauce (i accidently gave her a tablespoon and that put her over the edge)! then immediately fell asleep again! she's resting comfortably, trying not to think about her potASSium she has to take and hoping maybe we'll forget, i'm sure.
tomorrow we are going to work on some thank you notes.. (i know you don't believe me... ) we did get a couple out.. i figure you'll all have them by next year.. what's the thank you note etiquette when your sick? do you get an extra couple months, i mean, i think you get a year for wedding thank you's so sick thank you's should be at least 2 years!!
that's all for now. have a good night!
love.
so mom had a really good day today.. we moved very slowly, didn't rush around this morning and ended up taking our day trip to wegmans. they must have been running some great one day sales (which we could never find..) because i think about 75% of the population of buffalo was in that particular wegmans, and the other 25% were out for their mid-afternoon saturday drives.. not annoying at all to dad...
we got an interesting shopping cart with half of a bench attached so we could push mom and the cart around at the same time.. in theory, this was a great idea, but because of the volume of traffic in each aisle looking for the great sales.. it was kind of a fun experience.... we had to try to occupy aisles that only like 1 other person was in and then run to the other aisles looking for stuff... which mom didn't like because she wanted to see what brands were on sale.. anyways.. three hours later, we checked out and were on our way home. it was a fun day out.. mom was happy to be in a grocery store looking for bargains!
she took a power nap when we got home and then we went to the fitness center where she rode the exercise bike for 51/2 minutes! pretty good for her first try.. tomorrow she said she's doing 8.
we just finished our bathroom dinner... pan seared pork chops on our double burner, rice cooker mashed potatoes (might be the best ever mom said..) steamed corn and cinnamon applesauce. everything came out delicious and mom was so excited she ate everything off her plate, asked for a teaspoon more potatoes and applesauce (i accidently gave her a tablespoon and that put her over the edge)! then immediately fell asleep again! she's resting comfortably, trying not to think about her potASSium she has to take and hoping maybe we'll forget, i'm sure.
tomorrow we are going to work on some thank you notes.. (i know you don't believe me... ) we did get a couple out.. i figure you'll all have them by next year.. what's the thank you note etiquette when your sick? do you get an extra couple months, i mean, i think you get a year for wedding thank you's so sick thank you's should be at least 2 years!!
that's all for now. have a good night!
love.
Friday, September 24, 2010
day 59 (course 2 day 4)
hi everyone! i'm here with mom and dad in buffalo... it is great to see mom! she is so much stronger than she was even a week ago.
she had a pretty good day today, she balanced her checkbook.. wrote a few thank you notes and rested a lot.. dad got here around 4 and amy taught him how to do the chemo shot.. that was not as bad as he thought it was going to be... but it is a bit scary.. after all.. we're injecting mom with poison! amy left shortly after the chemo shot.. mom said she did such a great job and she's so thankful that amy is able to be here with her.
I got here around 6:30 and by 7 mom had me making a spaghetti dinner.. like camp style spaghetti.. we cooked meatballs in our rice cooker, then added sauce and let it simmer.. then we boiled pasta in a small saucepan using our new double burner.. this whole process made me a little nervous: 1st because our largest pot only holds about 2 cups of water... so boiling pasta was more like making wallpaper paste... 2nd we are in a a small room with a large smoke detector.. so we were quite sure our frying meatballs were going to set off the alarm in the hotel.. 3rd.. to prevent smoke from reaching the alarm, we moved our cooking to the bathroom.. that just is weird in itself.. right? after some strategic planning we pulled it all together and it wasn't bad at all! mom was happy and that's what counts!
shortly after dinner we had to give mom her potassium... amy made the orange liquid sound like a magical donut in Homer's eyes.. it's more like orange poison and now she hates orange anything... figures.. we gave her the 1 1/2 teaspoons she's supposed to get, lightly diluted with orange drink and she immediately threw it up and might never take it again. so now we're trying to think of all the other ways we can hide this terribly salty orange liquid sweat.. in smoothies... in v8 juice... in applesauce... cranberry juice... nothing sounds good. let us know if you have any suggestions!!
tomorrow is going to be a good day we hope.. some more thank you notes.. maybe a day trip to wegmans and if we get really inspired, maybe a drive to niagra falls.
mom is so grateful for all your prayers and support.. she can't believe all of the groups that are praying for her.. many of the people don't even know her and she's very touched that you are all out there praying for her..
k.. that's it for now..
love.
she had a pretty good day today, she balanced her checkbook.. wrote a few thank you notes and rested a lot.. dad got here around 4 and amy taught him how to do the chemo shot.. that was not as bad as he thought it was going to be... but it is a bit scary.. after all.. we're injecting mom with poison! amy left shortly after the chemo shot.. mom said she did such a great job and she's so thankful that amy is able to be here with her.
I got here around 6:30 and by 7 mom had me making a spaghetti dinner.. like camp style spaghetti.. we cooked meatballs in our rice cooker, then added sauce and let it simmer.. then we boiled pasta in a small saucepan using our new double burner.. this whole process made me a little nervous: 1st because our largest pot only holds about 2 cups of water... so boiling pasta was more like making wallpaper paste... 2nd we are in a a small room with a large smoke detector.. so we were quite sure our frying meatballs were going to set off the alarm in the hotel.. 3rd.. to prevent smoke from reaching the alarm, we moved our cooking to the bathroom.. that just is weird in itself.. right? after some strategic planning we pulled it all together and it wasn't bad at all! mom was happy and that's what counts!
shortly after dinner we had to give mom her potassium... amy made the orange liquid sound like a magical donut in Homer's eyes.. it's more like orange poison and now she hates orange anything... figures.. we gave her the 1 1/2 teaspoons she's supposed to get, lightly diluted with orange drink and she immediately threw it up and might never take it again. so now we're trying to think of all the other ways we can hide this terribly salty orange liquid sweat.. in smoothies... in v8 juice... in applesauce... cranberry juice... nothing sounds good. let us know if you have any suggestions!!
tomorrow is going to be a good day we hope.. some more thank you notes.. maybe a day trip to wegmans and if we get really inspired, maybe a drive to niagra falls.
mom is so grateful for all your prayers and support.. she can't believe all of the groups that are praying for her.. many of the people don't even know her and she's very touched that you are all out there praying for her..
k.. that's it for now..
love.
Thursday, September 23, 2010
Day 58 - Mr. Burns, NP (course 2 day 3)
Today started out with a quick trip to the hospital to do some blood labs... that lasted 6 hours. Typically, when they draw Mom's blood, they are looking for any counts that are out of the ordinary. If her platelets are low, for instance, they'll give her a transfusion.
Mom didn't need any blood, but she needed more potassium. We sat and chatted while they gave her a 3 hour drip of it. She also got prescribed more pills. When Mom was inpatient, every time she complained about taking a pill in the hospital, a nurse would say, "Just be happy you don't have to take Potassium - those are AWFUL!!" Each time I cringed... I had a sneaking suspicion that it was a jinx. Conspiracy theory, perhaps... but I'm telling you - they said it often and always followed it with a Mr. Burns cackle complete with tapping fingers (that part is hindsight... and possibly imagined). These tall tales of giant pills were a misfortune of someone else - some poor sap out there was choking down this awful pill and Mom's only solace was that at least she didn't have to take THAT pill. Frickin figures. Mom tried bargaining with promises of giant meals full of nothing but bananas rolled in spinach. She had crocodile tears. It was heartbreaking, but the Nurse Practitioner wouldn't budge. There was no alternative.
These pills have lived up to the reputation that preceded them. They are huge, honking, bigger than a shrimp pills. If I had a helmet and a shield available, I would have been wearing it when I inched over to show her what they looked like. To top it all off, they are capsules - which means we can't even pulverize them into 5 tiny shards like we used to do with the Prednisone. After an extremely brief discussion (Mom literally looked at me and said "No way am I taking that." - end of story) I called the Pharmacy to plead for an alternative. Surely there must be some way of dissolving this or sprinkling it on applesauce - I think Mom would have rather shoved the thing in her ear than try to swallow it. I braced myself for the response, with the lump in my throat swelling as quickly as the tears in Mom's eyes. "Sure, Ms. Briggs. We have that available in a liquid form if you would like. Is orange flavor ok or would she prefer cherry?" From here on out, that Nurse Practitioner will be referred to as Mr. Burns.
Mom didn't need any blood, but she needed more potassium. We sat and chatted while they gave her a 3 hour drip of it. She also got prescribed more pills. When Mom was inpatient, every time she complained about taking a pill in the hospital, a nurse would say, "Just be happy you don't have to take Potassium - those are AWFUL!!" Each time I cringed... I had a sneaking suspicion that it was a jinx. Conspiracy theory, perhaps... but I'm telling you - they said it often and always followed it with a Mr. Burns cackle complete with tapping fingers (that part is hindsight... and possibly imagined). These tall tales of giant pills were a misfortune of someone else - some poor sap out there was choking down this awful pill and Mom's only solace was that at least she didn't have to take THAT pill. Frickin figures. Mom tried bargaining with promises of giant meals full of nothing but bananas rolled in spinach. She had crocodile tears. It was heartbreaking, but the Nurse Practitioner wouldn't budge. There was no alternative.
These pills have lived up to the reputation that preceded them. They are huge, honking, bigger than a shrimp pills. If I had a helmet and a shield available, I would have been wearing it when I inched over to show her what they looked like. To top it all off, they are capsules - which means we can't even pulverize them into 5 tiny shards like we used to do with the Prednisone. After an extremely brief discussion (Mom literally looked at me and said "No way am I taking that." - end of story) I called the Pharmacy to plead for an alternative. Surely there must be some way of dissolving this or sprinkling it on applesauce - I think Mom would have rather shoved the thing in her ear than try to swallow it. I braced myself for the response, with the lump in my throat swelling as quickly as the tears in Mom's eyes. "Sure, Ms. Briggs. We have that available in a liquid form if you would like. Is orange flavor ok or would she prefer cherry?" From here on out, that Nurse Practitioner will be referred to as Mr. Burns.
The rest of the day went smoothly and Mom is looking forward to the weekend when she only has to have one shot per day.
Love,
Amy
Wednesday, September 22, 2010
Day 57 (course 2 day 2)
Today was pretty low key. Mom did some of her thank you notes. Now we just have to track down the stamps and get them in the mail. She's been wanting to do this for quite some time and feels good to be able to accomplish that task - even if it was just a few of them. She has so many to write. So many of you have been so thoughtful. Thank you for that.
The home health nurse came today to teach me how to administer the shot. It's a little more complicated than the Lovanox shot but I was able to manage. Mom said it didn't even hurt. Between that and the pills she had 2 kinds of chemo today and will for the next 2 days as well.
Mom has an early morning appointment at the clinic tomorrow to check her blood. She'll be going to the clinic twice a week so they can monitor her blood and make sure her numbers are in order - white cells, platelets, and especially liver enzymes.
Mom hopes everyone is doing well and sends her love.
Love,
Amy
The home health nurse came today to teach me how to administer the shot. It's a little more complicated than the Lovanox shot but I was able to manage. Mom said it didn't even hurt. Between that and the pills she had 2 kinds of chemo today and will for the next 2 days as well.
Mom has an early morning appointment at the clinic tomorrow to check her blood. She'll be going to the clinic twice a week so they can monitor her blood and make sure her numbers are in order - white cells, platelets, and especially liver enzymes.
Mom hopes everyone is doing well and sends her love.
Love,
Amy
Tuesday, September 21, 2010
Day 56 - First Day of Course 2a (course 2 day 1)
Mom did great today. It was a long morning for her - very early start and a lot of waiting. Then she had a chemo injection in her spine, a shot of chemo in her belly, a drip bag of chemo and a couple pills of more chemo. She handled all of this like a champ. We got her back to the hotel room and Dad had to get going home to Utica until Friday when he'll be returning for the weekend.
Mom got a well deserved 6 hour nap!! She woke up feeling pretty good and we had a nice little pasta roni and peas dinner. We're not really sure what to expect tonight as far as side effects go. These drugs affect everyone differently so for the time being we're trying to stay prepared and hoping for the best.
One of the chemo shots will have to be delivered by either myself or Dad. The nurse assured us that we would be trained until we felt "comfortable" with this process. Technically, it should be manageable since it's similar to how we already deliver the Lovanox. I'm not sure how to wrap my brain around getting "comfortable" with injecting my mother with what is essentially poison, but that's probably an entry for my Dear Diary blog.
Mom hopes everyone is well and sends her love and thanks for all the support.
Love,
Amy
Mom got a well deserved 6 hour nap!! She woke up feeling pretty good and we had a nice little pasta roni and peas dinner. We're not really sure what to expect tonight as far as side effects go. These drugs affect everyone differently so for the time being we're trying to stay prepared and hoping for the best.
One of the chemo shots will have to be delivered by either myself or Dad. The nurse assured us that we would be trained until we felt "comfortable" with this process. Technically, it should be manageable since it's similar to how we already deliver the Lovanox. I'm not sure how to wrap my brain around getting "comfortable" with injecting my mother with what is essentially poison, but that's probably an entry for my Dear Diary blog.
Mom hopes everyone is well and sends her love and thanks for all the support.
Love,
Amy
Monday, September 20, 2010
Day 55 - Rita's in Remission!
That's the big news. Mom had 0% blasts in her bone marrow from the biopsy last Monday. This is a little complicated to understand because the word "remission" has been used in every day language to be synonymous with "cured", which it is not.
I'll attempt to explain this briefly... remission means, as we've previously mentioned, that the patient (Mom) has <1% blast cells (abnormal cells). Mom and her Doctors are still charged with keeping the blast cells from coming back - that's what Course 2, Course 3 and the Stem Cell Transplant will try to accomplish. In this type of illness, ALL, the blast cells can sometimes come back (relapse). There isn't a set equation for exactly how long "remission" has to be until the patient (Mom) is considered "cured" but it can be anywhere from 2-5 years based on a million circumstances and opinions. We're looking forward to that, but trying not to get hung up on the details because what matters now is that Mom is where she needs to be in order to proceed with the treatment.
Mom has completed Course 1 and 1A under the Pediatric Protocol, which many of you know. Now, she's moving back to the Standard Care Protocol, which the Doctors think will be easier on her liver. We don't know exactly what the differences are yet, but it appears to be types and dosages of the various Chemo drugs. Since most of us have no real frame of reference, this is probably too much information but that's the general overview of what we found out today.
Mom had low Potassium so today Dad and I ran to the grocery store while Mom received some intravenous Potassium supplement in the IV Clinic (with - you guessed it - a beeping pole). We stocked up on a list of suggested items from a pamphlet provided by Dr. Wetzler. Mom will be working hard on eating a lot of these fruits and vegetables - bananas, oranges, apricots, avocados, spinach, beans, potatoes, etc. and drinking plenty of fluids. Exercise is going to be important too.
Anyway, the Course 2 start day was delayed one more day. It will be starting tomorrow instead. This will be her new "big day" of 4 different kinds of Chemo. We weren't able to start today because... wait for it... the Lovenox shot!! Yup, that's right! AGAIN! We were smart enough to hold off this morning but in an interesting twist of events we now have to hold off for TWO days prior to these treatments. This was news to us. Apparently not to the Doctors and Nursing staff... but to us it was certainly a surprise! This blow was minor and softened greatly by the news of Mom's biopsy being so favorable.
Another early day tomorrow (poor Mom is not looking forward to a 7AM appointment), and a couple more important lessons learned. We're going to be submitting these to a fortune cookie company for consideration, although I'm not sure they'd fit on the wrapper:
I'll attempt to explain this briefly... remission means, as we've previously mentioned, that the patient (Mom) has <1% blast cells (abnormal cells). Mom and her Doctors are still charged with keeping the blast cells from coming back - that's what Course 2, Course 3 and the Stem Cell Transplant will try to accomplish. In this type of illness, ALL, the blast cells can sometimes come back (relapse). There isn't a set equation for exactly how long "remission" has to be until the patient (Mom) is considered "cured" but it can be anywhere from 2-5 years based on a million circumstances and opinions. We're looking forward to that, but trying not to get hung up on the details because what matters now is that Mom is where she needs to be in order to proceed with the treatment.
Mom has completed Course 1 and 1A under the Pediatric Protocol, which many of you know. Now, she's moving back to the Standard Care Protocol, which the Doctors think will be easier on her liver. We don't know exactly what the differences are yet, but it appears to be types and dosages of the various Chemo drugs. Since most of us have no real frame of reference, this is probably too much information but that's the general overview of what we found out today.
Mom had low Potassium so today Dad and I ran to the grocery store while Mom received some intravenous Potassium supplement in the IV Clinic (with - you guessed it - a beeping pole). We stocked up on a list of suggested items from a pamphlet provided by Dr. Wetzler. Mom will be working hard on eating a lot of these fruits and vegetables - bananas, oranges, apricots, avocados, spinach, beans, potatoes, etc. and drinking plenty of fluids. Exercise is going to be important too.
Anyway, the Course 2 start day was delayed one more day. It will be starting tomorrow instead. This will be her new "big day" of 4 different kinds of Chemo. We weren't able to start today because... wait for it... the Lovenox shot!! Yup, that's right! AGAIN! We were smart enough to hold off this morning but in an interesting twist of events we now have to hold off for TWO days prior to these treatments. This was news to us. Apparently not to the Doctors and Nursing staff... but to us it was certainly a surprise! This blow was minor and softened greatly by the news of Mom's biopsy being so favorable.
Another early day tomorrow (poor Mom is not looking forward to a 7AM appointment), and a couple more important lessons learned. We're going to be submitting these to a fortune cookie company for consideration, although I'm not sure they'd fit on the wrapper:
- Instead of "A watched pot never boils" how about "A watched IV drip bag never runs out"?
- Instead of "No news is good news!" how about "No news is not preferred when important news regarding pre-treatment instructions should be delivered!!!"
Hey, if Confucius said it they'd pay attention. We are open for suggestions if anyone has any more thoughts.
Love,
Amy
Sunday, September 19, 2010
Day 54... Buffalo or Bust!
Well, we're back in Buffalo. While this isn't exactly where Mom would choose to spend her time, we all know this is what's best for her right now. We're just happy for the opportunity to get her better.
Tomorrow probably isn't going to be the best day. It's the most rigorous of treatment days for Course 2. Mom will have interthecal chemo (in her spine) and have to lay flat for an hour. She also be administered a chemo drip for about 3 hours. Between the bloodwork, waiting, talking to Dr's, waiting, asking questions, waiting, chemo, waiting, more poking and prodding, waiting... and a few beeps from some random pole for good measure... we're expecting it's going to be extremely long. The good news is that once tomorrow is over with, she has a lighter schedule until day 29 of Course 2.
Dad, Mom and I are settled into the DoubleTree, which is connected right to the hospital. That means as long as we are here we won't have to go outside and brave the elements. The room is already set at about equator degrees (I'd say between 90-92?) so I have a feeling it's not even going to be Winter this year as far as Mom's concerned.
Mom hopes everyone had a nice weekend and has a good week at work. We'll update you tomorrow to let you know how everything went.
Love,
Amy
Tomorrow probably isn't going to be the best day. It's the most rigorous of treatment days for Course 2. Mom will have interthecal chemo (in her spine) and have to lay flat for an hour. She also be administered a chemo drip for about 3 hours. Between the bloodwork, waiting, talking to Dr's, waiting, asking questions, waiting, chemo, waiting, more poking and prodding, waiting... and a few beeps from some random pole for good measure... we're expecting it's going to be extremely long. The good news is that once tomorrow is over with, she has a lighter schedule until day 29 of Course 2.
Dad, Mom and I are settled into the DoubleTree, which is connected right to the hospital. That means as long as we are here we won't have to go outside and brave the elements. The room is already set at about equator degrees (I'd say between 90-92?) so I have a feeling it's not even going to be Winter this year as far as Mom's concerned.
Mom hopes everyone had a nice weekend and has a good week at work. We'll update you tomorrow to let you know how everything went.
Love,
Amy
Saturday, September 18, 2010
day 53... last day home for a while!
Yup.. seems hard to believe our 2 weeks are over! we spent the day packing, organizing, shopping for supplies and hanging out. it was a good day and mom was happy to see everyone..
there's been a small change, the hope lodge isn't able to accomodate mom right now so they'll be checking in to the double tree tomorrow and staying for at least a week there.. maybe more.. we'll find out sometime this week. we are ok with this change.. although the hope lodge was nice and free, the double tree is connected to the hospital and mom would never have to go outside (thinking ahead a few months!)
dyle came over to see mom today.. they were both so happy to see eachother.. dyle built mom a large step for the back sliding door so she could get out the door with her walker a little easier and I think he's also going to work on a ramp for the back!
sherry brought over some more hats and mom loved them.. especially the velvet one that sherry's going to tailor to mom's specifications.. bigger brim... wider top.. ties for under her chin. it's going to be cute!
mom just said goodnight.. she's going to enjoy her last night for a while in her new bedroom... being as comfortable as she can!
we'll chat more tomorrow..
love.
there's been a small change, the hope lodge isn't able to accomodate mom right now so they'll be checking in to the double tree tomorrow and staying for at least a week there.. maybe more.. we'll find out sometime this week. we are ok with this change.. although the hope lodge was nice and free, the double tree is connected to the hospital and mom would never have to go outside (thinking ahead a few months!)
dyle came over to see mom today.. they were both so happy to see eachother.. dyle built mom a large step for the back sliding door so she could get out the door with her walker a little easier and I think he's also going to work on a ramp for the back!
sherry brought over some more hats and mom loved them.. especially the velvet one that sherry's going to tailor to mom's specifications.. bigger brim... wider top.. ties for under her chin. it's going to be cute!
mom just said goodnight.. she's going to enjoy her last night for a while in her new bedroom... being as comfortable as she can!
we'll chat more tomorrow..
love.
Friday, September 17, 2010
Day 52
We had another special day at home today. Mom visited with a couple of her dear friends, Diane and Aleyne. The house was full of raucous laughter and the stories being told were hilarious. Laughter is the best medicine, right? She got a good dose today. I have a feeling Mom preferred their medicine to the pills we have to force-feed her 4 times a day... thanks for upstaging us, Diane and Aleyne! They also came bearing a variety of delicious soups and treats for Mom and some special gifts for her. Mom continues to be overwhelmed with everyones' generosity - we all are.
Kelly came with her famous Shepard's Pie that Mom has been pining for. After a small cooking lesson regarding why putting paper recipes in the oven is a bad idea that Dad delivered to our resident Home Economics teacher... who shall remain nameless... the house was full of a delicious smell that could never be replicated by any beef pie Yankee Candle. It was a really special treat for us.
We're going to be pretty busy tomorrow preparing for the trip out to Buffalo. Hopefully we'll all sleep well and wake refreshed to tackle another hectic day.
Mom hopes everyone has a nice weekend and sends her love to everyone.
Love,
Amy
Kelly came with her famous Shepard's Pie that Mom has been pining for. After a small cooking lesson regarding why putting paper recipes in the oven is a bad idea that Dad delivered to our resident Home Economics teacher... who shall remain nameless... the house was full of a delicious smell that could never be replicated by any beef pie Yankee Candle. It was a really special treat for us.
We're going to be pretty busy tomorrow preparing for the trip out to Buffalo. Hopefully we'll all sleep well and wake refreshed to tackle another hectic day.
Mom hopes everyone has a nice weekend and sends her love to everyone.
Love,
Amy
Thursday, September 16, 2010
Day 51
Today was another good day for Mom. A little hectic, but good. She had a really nice visit with her Aunt Lisa, who generously brought delicious brownies and some other very thoughtful gifts. She found a ladybug flyswatter for Mom! It's pretty fitting because just the other day Mom "couldn't believe that a friggin bug would fly in here" when we were getting her into bed. She thought that bug was being very disrespectful and we were all very surprised that this particular bug was so inconsiderate. The flyswatter would have come in handy then. Also, for the spider incident.
Sue and Keith were able to stop over and spend some time with Mom. Susie cut Mom's wigs and got her all dazzled up - she looked great. They brought some scarves over and we played around with those for a little while. Mom was really happy to see them.
Lisa just ran to KFC to try and get some food that Mom has a taste for. Eating has been a little more challenging lately as everything seems to taste like a "belt buckle" to Mom. Hopefully this is something that will pass and she'll be back on the schedule of eating footlong subs and seafood extravaganzas.
Tomorrow should be much of the same thing. For now, Mom is just enjoying her house and especially her fireplace. She wishes you all a good night and sends her love and thank yous to everyone.
Love,
Amy
Sue and Keith were able to stop over and spend some time with Mom. Susie cut Mom's wigs and got her all dazzled up - she looked great. They brought some scarves over and we played around with those for a little while. Mom was really happy to see them.
Lisa just ran to KFC to try and get some food that Mom has a taste for. Eating has been a little more challenging lately as everything seems to taste like a "belt buckle" to Mom. Hopefully this is something that will pass and she'll be back on the schedule of eating footlong subs and seafood extravaganzas.
Tomorrow should be much of the same thing. For now, Mom is just enjoying her house and especially her fireplace. She wishes you all a good night and sends her love and thank yous to everyone.
Love,
Amy
day 50: september 15, 2010
Hmm... well I promised I'd get this out to you last night.. I don't know where the time or my energy goes!
mom had another great day yesterday.. she had me get 36 cans of cora san marzano tomatoes ON SALE at chanatry's for .99 each... that should say it all!
shes feeling better each day, stronger, more positive, and even though she wishes she didn't have to go back at all.. she will be ready on monday.
she didn't take any pain meds in the morning, so she was able to get through the whole paper without napping, which was one of her gols! she did 6 laps.. great physical therapy.. and mom was very peckish throughout the day.. pistachio ice cream that amy picked the nuts out of.. lime jello, then cherry jello, cake, pierogies, fruit.. all sorts of stuff!
we've started a list of items to be packed for this trip.. we hope not to take 4 car loads out there, but i'm guessing it will be close!
mom, sancho and lulu napped for the afternoon so amy was able to get a lot done.. I guess they were very good babysitters all day!
not much else to update... will later.
love.
mom had another great day yesterday.. she had me get 36 cans of cora san marzano tomatoes ON SALE at chanatry's for .99 each... that should say it all!
shes feeling better each day, stronger, more positive, and even though she wishes she didn't have to go back at all.. she will be ready on monday.
she didn't take any pain meds in the morning, so she was able to get through the whole paper without napping, which was one of her gols! she did 6 laps.. great physical therapy.. and mom was very peckish throughout the day.. pistachio ice cream that amy picked the nuts out of.. lime jello, then cherry jello, cake, pierogies, fruit.. all sorts of stuff!
we've started a list of items to be packed for this trip.. we hope not to take 4 car loads out there, but i'm guessing it will be close!
mom, sancho and lulu napped for the afternoon so amy was able to get a lot done.. I guess they were very good babysitters all day!
not much else to update... will later.
love.
Wednesday, September 15, 2010
day 49: 9.14.10
ok, so this is a little late, but I like to keep the day's going.. helps us keep track of things!
Yesterday mom had a great day.. she had amy there with her, and sancho and lulu, and annette came over for a visit and brought her famous frittata! Sherry stopped over after work to see if mom wanted to make flax bags.. she wasn't up to it because she had been visiting for a while and just wanted to take the night off! We didn't stay very long after dad got home, we figured we'd give them some quiet, alone time.
she's feeling better every day and is working on getting stronger for this next course of treatment.
full update later, I promise!!
bye for now.
love.
Yesterday mom had a great day.. she had amy there with her, and sancho and lulu, and annette came over for a visit and brought her famous frittata! Sherry stopped over after work to see if mom wanted to make flax bags.. she wasn't up to it because she had been visiting for a while and just wanted to take the night off! We didn't stay very long after dad got home, we figured we'd give them some quiet, alone time.
she's feeling better every day and is working on getting stronger for this next course of treatment.
full update later, I promise!!
bye for now.
love.
Monday, September 13, 2010
More Info
Hi Everyone - we wanted to give a little more detail regarding Mom's trip to Buffalo and how everything shook out today.
Mom's liver is starting to get back to where it needs to be. It's made some progress that we are hoping continues through until she starts back up on Monday. Her other blood counts are all good - white blood cells slightly up due to a small, manageable infection but otherwise they are right where they need to be. We won't know how many blast cells she has from her bone marrow until Monday when we get there.
Mom was given the option of starting Thursday or Monday - there would have been no difference, just a few extra days of rest. Mom surprisingly (is there a special font for sarcasm?) chose to rest longer at home. That means we'll be packing up for the long haul on Sunday and heading out to get her settled in the Hope House for Course 2. Course 2 is the Consolidation Phase, where the chemo is designed to keep the leukemia from multiplying.
Course 2 consists of a phase A and phase B, both identical and both 28 days long for a total of 56 days. Day 1 will be a very difficult day (that will be next Monday). She will have interthecal chemotherapy in her spine, 3 hours of additional chemo and a host of other pills and shots. The remainder of 2A will be pills, shots and visits to the clinic. Some will be done at the hospital and sometimes they will send a nurse over to administer right at the Hope House. After the 28 days of Course 2A she does the same exact thing for Course 2B. Day 29 will be another tough day and the remainder of 2B will be pills, shots and visits to the clinic... etc.
While we're at the Hope House we're expected to get into a sort of normal routine. I think we all have a new definition of normal, but we're looking forward to having a kitchen, a private room where people are required to knock before entering and won't be doing so every 20 minutes, and we are happy to be rid of that dang beeping pole. Maybe we'll even make some friends that we can make Christmas cookies with. Whatever we do, we're going to do the best we can to get Mom better and get her home.
Tonight we sat around chatting about the day and wondering about what is to come. Mom was very happy to be able to spend some time catching up with Gina, who brought over a tray of lasagna that her mother, Barbara, made. She didn't even get out of the driveway and we had mom's piece heating up. Within minutes half the tray was gone and there was silence from all of us for the first time all day. It was delicious, needless to say. Dad is already wondering when an appropriate time to "put another request" in would be.
Tomorrow I'll be working from Mom's house and Sancho and LuLu will be taking over watching Mom. Just joking, they'll be helping but I'll be doing most of the dirty work. I think Mom might be a little more happy about taking her pills if I have them delivered on a paper cup strapped to LuLu's head though... I may have to try that tomorrow. We're always looking for new and interesting ways to make pill taking less miserable for Mom. I'll let everyone know how it goes.
Hope everyone is having a good night. Thanks again for all the well wishes and prayers.
Love,
Amy
Mom's liver is starting to get back to where it needs to be. It's made some progress that we are hoping continues through until she starts back up on Monday. Her other blood counts are all good - white blood cells slightly up due to a small, manageable infection but otherwise they are right where they need to be. We won't know how many blast cells she has from her bone marrow until Monday when we get there.
Mom was given the option of starting Thursday or Monday - there would have been no difference, just a few extra days of rest. Mom surprisingly (is there a special font for sarcasm?) chose to rest longer at home. That means we'll be packing up for the long haul on Sunday and heading out to get her settled in the Hope House for Course 2. Course 2 is the Consolidation Phase, where the chemo is designed to keep the leukemia from multiplying.
Course 2 consists of a phase A and phase B, both identical and both 28 days long for a total of 56 days. Day 1 will be a very difficult day (that will be next Monday). She will have interthecal chemotherapy in her spine, 3 hours of additional chemo and a host of other pills and shots. The remainder of 2A will be pills, shots and visits to the clinic. Some will be done at the hospital and sometimes they will send a nurse over to administer right at the Hope House. After the 28 days of Course 2A she does the same exact thing for Course 2B. Day 29 will be another tough day and the remainder of 2B will be pills, shots and visits to the clinic... etc.
While we're at the Hope House we're expected to get into a sort of normal routine. I think we all have a new definition of normal, but we're looking forward to having a kitchen, a private room where people are required to knock before entering and won't be doing so every 20 minutes, and we are happy to be rid of that dang beeping pole. Maybe we'll even make some friends that we can make Christmas cookies with. Whatever we do, we're going to do the best we can to get Mom better and get her home.
Tonight we sat around chatting about the day and wondering about what is to come. Mom was very happy to be able to spend some time catching up with Gina, who brought over a tray of lasagna that her mother, Barbara, made. She didn't even get out of the driveway and we had mom's piece heating up. Within minutes half the tray was gone and there was silence from all of us for the first time all day. It was delicious, needless to say. Dad is already wondering when an appropriate time to "put another request" in would be.
Tomorrow I'll be working from Mom's house and Sancho and LuLu will be taking over watching Mom. Just joking, they'll be helping but I'll be doing most of the dirty work. I think Mom might be a little more happy about taking her pills if I have them delivered on a paper cup strapped to LuLu's head though... I may have to try that tomorrow. We're always looking for new and interesting ways to make pill taking less miserable for Mom. I'll let everyone know how it goes.
Hope everyone is having a good night. Thanks again for all the well wishes and prayers.
Love,
Amy
Day 48 biopsy update
Hi everyone.. I know you are waiting as paitently as I am.. and while we do not have results from the bone marrow biopsy because they just completed it not too long ago, we do know that mom's numbers (blood counts) are good, so she'll start course 2 on Monday!!! I haven't found out yet why monday instead of thursday.. we'll have to wait for them to get home before we know that!
thanks for your prayers.. you helped more than you could know.
update later.
love.
thanks for your prayers.. you helped more than you could know.
update later.
love.
Sunday, September 12, 2010
day 47... the Hope Lodge
mom had a pretty good day today.. she slept well, had pancakes and popscicles for breakfast and a seafood extravaganza for lunch. after a short rest and a visit with family, she had to leave for buffalo. this time, mom and dad are staying at the hope lodge.. finally.. mom got to see what it's like there! they just arrived not too long ago and are settled in their room. it's beautiful they said. we are all so happy and relieved! they have a little tv in their room and the bathroom is right next door. (the rooms that have bathrooms in them are reserved for patients receiving chemotherapy). mom said they have the heat on so it's nice and toasty in there.. plus she has 3 flax bags and a couple fleece blankets too!
here's a link to the virtual tour for those of you interested! http://www5.cancer.org/docroot/subsite/hopelodge/NY_Buffalo/nyb_virtual_tour.asp
we are all very anxious about tomorrow's tests. they will determine whether or not mom can move on to course 2 of her treatment. pray for good results.
mom should be home tomorrow afternoon and i'll update as soon as i can with any news.
good night.
love.
here's a link to the virtual tour for those of you interested! http://www5.cancer.org/docroot/subsite/hopelodge/NY_Buffalo/nyb_virtual_tour.asp
we are all very anxious about tomorrow's tests. they will determine whether or not mom can move on to course 2 of her treatment. pray for good results.
mom should be home tomorrow afternoon and i'll update as soon as i can with any news.
good night.
love.
Saturday, September 11, 2010
day 46 Lobster fest
so today was fun.. matt came up with the idea to have a lobster fest.. really a new england seafood boil. we had shrimp cocktail, clam chowder, steamed clams, steamed lobsters, salt potatoes, corn and steak. aren't you jealous? yea, it was delicious! we had a great time and mom was very happy.
they're packing up tomorrow to head for buffalo for the bone marrow biopsy on monday.. they get to stay at the hope lodge, so mom's excited. she's packed her camera and tape measure so she can plan what she's bringing! she wants to see each room so she can put in requests for which one she'd prefer... even though having a room at all is a blessing! the hope lodge doesn't know what they're in for!
we don't have that much to chat about today... we're just so happy to have these moments with mom and are cherishing every single minute.
love.
they're packing up tomorrow to head for buffalo for the bone marrow biopsy on monday.. they get to stay at the hope lodge, so mom's excited. she's packed her camera and tape measure so she can plan what she's bringing! she wants to see each room so she can put in requests for which one she'd prefer... even though having a room at all is a blessing! the hope lodge doesn't know what they're in for!
we don't have that much to chat about today... we're just so happy to have these moments with mom and are cherishing every single minute.
love.
Friday, September 10, 2010
day 45
so.. we were too exhasted to post last night..and i know you were all patiently waiting for an update.. but we needed to compose our thoughts before we posted..
Dad took mom to buffalo yesterday for her kidney ultrasound and her bone marrow biopsy. turns out that was quite a process... we had to get mom up by 6 am so they could leave by 7:15.. that part went ok.. it was once in buffalo that things started unraveling. every move they made seemed like a giant mountain to climb.. getting her out of the car and saftely in the waiting room.. then parking the car.. then going to appointments.. realizing they needed to get blood taken before going to appointments.. not remembering the green card (the medical card they issue for patients) so they had to answer questions all over again.. like when was the last time you were hospitalized.. what medications are you currently taking.. are you allergic to anything... (are you serious? YOU ARE HER DOCTORS!!).. and then finally, the tip of the ice berg.. she couldn't get the bone marrow biopsy because we gave her the lovenox shot! there were no special instructions.. evidently we were supposed to either remember not to give the shot or use deductive reasoning to determine that anti-coagulatant shots aren't good for open wounds.. well.. guess what.. we're so busy trying to be the best frickin care givers that we forgot to pay attention to the stuff the doctors and nurses get paid to tell us... ok.. that's the end of my frustration.. at least out loud.
mom's kidney ultrasound was good. they think it's a cyst but they'll re-check it in 3 months. that was about the only good news we got. her blood numbers aren't as good as they have hoped.. we really need to work on getting her liver functions better so she can continue her treatment.. mom and dad will be going back out sunday for a monday bone marrow biopsy and more bloodwork, so we'll have more numbers then. pray. they got home at a reasonable hour, mom ate a footlong subway sub, had some mcdonalds orange drink and went to bed early..
she slept for 11 hours last night.. what a difference today from yesterday!! she's like a new rita. we've made a pact to work harder.. all of us.. mom's going to try harder, we're going to push a little harder and hopefully we'll have some positive results!
mom did a lot of physical therapy today, taking charge of her day to day activities, helping herself to the items in the kitchen instead of being waited on.. while we love taking care of her, we have come to realize she needs to take care of herself to get strong.. we are making sure that happens.
she had a great visit with andrea today while dad did the grocery shopping... then she had two ears of corn while she talked about all the shrimp she's going to have tomorrow... and ate pizza and wings for dinner.. no bleu cheese. now we're sitting here chatting, winding down and getting ready to flush lines and take our night time meds.. guess what?! no prednisone!! yipee!! mom only has 1 pill to take tonight. she's wicked happy.
mom wants you to know she's content with her family.. she's appreciative of all the love that she's getting from everyone and she might even work on her thank you notes... hmm.. you probably aren't holding your breath for those...she had a great day today, lovely visits with her friends and lots of laughs!!
k, i'll let you go now.. will update tommorow. it's going to be a great day.. just wait, you'll see.
love.
Dad took mom to buffalo yesterday for her kidney ultrasound and her bone marrow biopsy. turns out that was quite a process... we had to get mom up by 6 am so they could leave by 7:15.. that part went ok.. it was once in buffalo that things started unraveling. every move they made seemed like a giant mountain to climb.. getting her out of the car and saftely in the waiting room.. then parking the car.. then going to appointments.. realizing they needed to get blood taken before going to appointments.. not remembering the green card (the medical card they issue for patients) so they had to answer questions all over again.. like when was the last time you were hospitalized.. what medications are you currently taking.. are you allergic to anything... (are you serious? YOU ARE HER DOCTORS!!).. and then finally, the tip of the ice berg.. she couldn't get the bone marrow biopsy because we gave her the lovenox shot! there were no special instructions.. evidently we were supposed to either remember not to give the shot or use deductive reasoning to determine that anti-coagulatant shots aren't good for open wounds.. well.. guess what.. we're so busy trying to be the best frickin care givers that we forgot to pay attention to the stuff the doctors and nurses get paid to tell us... ok.. that's the end of my frustration.. at least out loud.
mom's kidney ultrasound was good. they think it's a cyst but they'll re-check it in 3 months. that was about the only good news we got. her blood numbers aren't as good as they have hoped.. we really need to work on getting her liver functions better so she can continue her treatment.. mom and dad will be going back out sunday for a monday bone marrow biopsy and more bloodwork, so we'll have more numbers then. pray. they got home at a reasonable hour, mom ate a footlong subway sub, had some mcdonalds orange drink and went to bed early..
she slept for 11 hours last night.. what a difference today from yesterday!! she's like a new rita. we've made a pact to work harder.. all of us.. mom's going to try harder, we're going to push a little harder and hopefully we'll have some positive results!
mom did a lot of physical therapy today, taking charge of her day to day activities, helping herself to the items in the kitchen instead of being waited on.. while we love taking care of her, we have come to realize she needs to take care of herself to get strong.. we are making sure that happens.
she had a great visit with andrea today while dad did the grocery shopping... then she had two ears of corn while she talked about all the shrimp she's going to have tomorrow... and ate pizza and wings for dinner.. no bleu cheese. now we're sitting here chatting, winding down and getting ready to flush lines and take our night time meds.. guess what?! no prednisone!! yipee!! mom only has 1 pill to take tonight. she's wicked happy.
mom wants you to know she's content with her family.. she's appreciative of all the love that she's getting from everyone and she might even work on her thank you notes... hmm.. you probably aren't holding your breath for those...she had a great day today, lovely visits with her friends and lots of laughs!!
k, i'll let you go now.. will update tommorow. it's going to be a great day.. just wait, you'll see.
love.
Day 44...September 9
Hi. we didn't write last night because it was a long day. mom is home resting and we'll be sure to update tonight.
thanks
love.
thanks
love.
Wednesday, September 8, 2010
day 43.. so.. are there any more shrimp...seriously...
that was mom's question after eating her shrimp and steak dinner tonight... usually she's satisfied with the 1 colossal shrimp and a chunk of steak all cut into small peices.. tonight after finishing all of the shrimp in the bowl she (in the middle of our evidently boring conversation) said.. so .. are there any more shrimp.. seriously? Of course.. we all said.. there are 3 back up bags!! after wishing there were just one more already prepared, and not wanting to wait the 3 minutes it takes to thaw, peel and cook the shrimp.. she opted not to have any more, but was comforted in knowing at any point in time, she could have as much shrimp as she wanted! AND.. amy just notified us that endless shrimp starts at red lobster this week!! mom's eyes lit up like a weather station during a lightning storm! we told her as soon as she gets a little stronger we'll take her.. instantly, she said.. get me out of this chair and bring me some dumbells!!
today was a better day.. better night's sleep, better home health care experience (thanks to St. E's) and a little down time for both mom and dad.. though not nearly as much as they'd like, they did have some time to just sit and relax.
tomorrow's going to be busy.. mom and dad have to get up around 6am and be out the door by 7ish headed for roswell. she has an ultrasound on her kidney at 11:15 and a bone marrow biopsy at 1 pm with Dr. Wetzler. they'll flush her lines and look at the one that is clogged. she'll recover from the concious sedation and hopefully be on her way back home in the afternoon... she'll have 1 more week to rest before course 2 starts.
we're looking forward to hearing the results from tuesday's blood draw and will be anxiously waiting for the news on the ultrasound and bone marrow biopsy.. everyone say some extra prayers tonight.. please.
it's a short post, i know.. it's so much easier to write in buffalo where there aren't any other distractions.. like work or small dogs chirping at the side of the bed..... so for now i guess that's it!
thank you again.. i can't say it enough.
love.
today was a better day.. better night's sleep, better home health care experience (thanks to St. E's) and a little down time for both mom and dad.. though not nearly as much as they'd like, they did have some time to just sit and relax.
tomorrow's going to be busy.. mom and dad have to get up around 6am and be out the door by 7ish headed for roswell. she has an ultrasound on her kidney at 11:15 and a bone marrow biopsy at 1 pm with Dr. Wetzler. they'll flush her lines and look at the one that is clogged. she'll recover from the concious sedation and hopefully be on her way back home in the afternoon... she'll have 1 more week to rest before course 2 starts.
we're looking forward to hearing the results from tuesday's blood draw and will be anxiously waiting for the news on the ultrasound and bone marrow biopsy.. everyone say some extra prayers tonight.. please.
it's a short post, i know.. it's so much easier to write in buffalo where there aren't any other distractions.. like work or small dogs chirping at the side of the bed..... so for now i guess that's it!
thank you again.. i can't say it enough.
love.
Tuesday, September 7, 2010
Day 42 - Evening Report
Today was an OK day after a little rocky start. Nothing wrong with Rita - just trying to navigate through the healthcare system. We had to have blood drawn today and got that managed OK. I was trying to find a way to get it taken through Rita's central line so that she wouldn't have to get stuck. Long story short, she got stuck and did just fine. The staff at Marion Medical were excellent to her - very gentle and compassionate. We got some good exercise today and are now getting ready for a good nights sleep. Sorry this is so short but its getting late and I am going to turn in.
Good night, Dave
Good night, Dave
Monday, September 6, 2010
day 41 what a great day!
hi! as i promised, here is tonight's post! we had an great day today.. I got to the house around 7:40 so I could take care of mom all day.. my last official day of summer duty.. kind of sad if you ask me.
the morning started without a hitch, coffee.. bagel... chatting.. then it came time for pills, flushes and the shot.. that's where it got interesting. the pills were ok.. she definitely growled at me, might have used some colorful language and asked if I was sure she had to still take ALL the prednisone.. then came the flushes.. normally they go so smoothly! mom has a 3 line catheter (triple lumen catheter) in her chest (you may have seen in pictures) which allows the doctors and nurses to administer iv's and take blood without sticking her a million times. the lines are normally used and flushed multiple times a day at the hospital, but we just flush them twice a day at home to keep clots from forming. today, one of the lines was very hard to flush and i didn't want to push too hard because i could cause major problems, like busting a line or dislodging a clot if one formed.... sometimes clots just form.. even in a short period of time.. if they do, the nurses simply hook up medicine to the line and the clot dissolves in less than a half hour.. it's usually not a big deal at all and actually happens all the time.. the problem comes where we (amy and i) told dad we had everything under control.. and mom forced him to go golfing.. and we had to call the home health care nurses and notify Roswell that we couldn't get one of her lines flushed... and dad hid the phone numbers on us (or placed them securly in his wallet so they'd be easily accessable.. if we were with him or knew this at all!) geez. so after searching the house, calling Roswell and breaking down to call dad, we called the home health care number and the nurse said there was nothing they had to even do today, it wasn't an emergency! could have fooled me..
we still were'nt totally comfortable with this, so we looked up mom's neighbor Korrin, a nurse who worked in an oncology office.. and she came and saved the day!! she flushed the line (and said there was some resistance, so i'm glad I'm just not a wimp) and made sure everything looked ok! now it was already after noon! where did the time go?!
we spent the rest of the day eating delicious food, telling stories and sharing laughs with family and friends. mom was able to sit outside for a while this afternoon and enjoyed seeing all her beautiful flowers. when everyone left she sat inside by the fire.. only for like 5 minutes because it was like africa in there.. but she got to sit by the fire none the less!
she could hardly keep her eyes open when i said goodbye a little before 9.. she was looking forward to a nap before her night time pills and then a wonderful nights sleep.. with no interruptions!
Dad's spending the day home with her tomorrow.. she has to get blood taken and they'll check out those pesky lines... then they can just enjoy eachother's company and relax... I'm sure that will feel so nice!
she swears she's going to get to those thank you notes sometime this week!!!
have a good night.. thanks for taking the time to check in on mom.
love.
the morning started without a hitch, coffee.. bagel... chatting.. then it came time for pills, flushes and the shot.. that's where it got interesting. the pills were ok.. she definitely growled at me, might have used some colorful language and asked if I was sure she had to still take ALL the prednisone.. then came the flushes.. normally they go so smoothly! mom has a 3 line catheter (triple lumen catheter) in her chest (you may have seen in pictures) which allows the doctors and nurses to administer iv's and take blood without sticking her a million times. the lines are normally used and flushed multiple times a day at the hospital, but we just flush them twice a day at home to keep clots from forming. today, one of the lines was very hard to flush and i didn't want to push too hard because i could cause major problems, like busting a line or dislodging a clot if one formed.... sometimes clots just form.. even in a short period of time.. if they do, the nurses simply hook up medicine to the line and the clot dissolves in less than a half hour.. it's usually not a big deal at all and actually happens all the time.. the problem comes where we (amy and i) told dad we had everything under control.. and mom forced him to go golfing.. and we had to call the home health care nurses and notify Roswell that we couldn't get one of her lines flushed... and dad hid the phone numbers on us (or placed them securly in his wallet so they'd be easily accessable.. if we were with him or knew this at all!) geez. so after searching the house, calling Roswell and breaking down to call dad, we called the home health care number and the nurse said there was nothing they had to even do today, it wasn't an emergency! could have fooled me..
we still were'nt totally comfortable with this, so we looked up mom's neighbor Korrin, a nurse who worked in an oncology office.. and she came and saved the day!! she flushed the line (and said there was some resistance, so i'm glad I'm just not a wimp) and made sure everything looked ok! now it was already after noon! where did the time go?!
we spent the rest of the day eating delicious food, telling stories and sharing laughs with family and friends. mom was able to sit outside for a while this afternoon and enjoyed seeing all her beautiful flowers. when everyone left she sat inside by the fire.. only for like 5 minutes because it was like africa in there.. but she got to sit by the fire none the less!
she could hardly keep her eyes open when i said goodbye a little before 9.. she was looking forward to a nap before her night time pills and then a wonderful nights sleep.. with no interruptions!
Dad's spending the day home with her tomorrow.. she has to get blood taken and they'll check out those pesky lines... then they can just enjoy eachother's company and relax... I'm sure that will feel so nice!
she swears she's going to get to those thank you notes sometime this week!!!
have a good night.. thanks for taking the time to check in on mom.
love.
day 40... a little late..
well, we promised that we would do our best to update everyday.. in fact, for a while I was trying so hard to do a morning and an evening update.. and sometimes a noon one too! I guess yesterday just slipped right by us.. sorry about that to all of you who wait for the posts.. i know how that feels, when I'm home and mom's in buffalo and i'm waiting patiently (probably not really) for news. so today, you're getting at least 2 updates!
we spent yesterday relaxing again, sherry and wayne brought over donuts that we sampled all day.. I love when I see a box of assorted donuts because the delicious flavors and curiosity of the fillings make me soda excited and I spend all day thinking... do i like cake donuts, especially blueberry? what does a strawberry yeast donut taste like? does that one have custard in it, or just whipped cream on top? hmmm... maybe I'll just have an inch of each. but on the other hand, if it were a box of plain glazed donuts, i'd have a half of one and be fine the rest of the day! Hope that happens to everyone...
Then there was the chicken soup.. delicious chicken soup made with love by amy.. we asked mom how she likes it (lots of onion, little garlic, white meat chicken...) and boy did she like it!! she had 2 bowls! and let's not forget the shrimp and crab stuffed sole from gerry (alee's).. she loved that and is so happy that she has enough for like 4 days!! I know it sounds like all we do is eat.. but really we're visiting a lot in between the eating! oh, and resting too..
Jasmine came for a visit.. she was such a helpful little nugget all day asking meema if she wanted drinks or dinner or ice cream... and making arts and crafts.. she comes up with the craziest things! mom was so happy to see her and mary.
we had a great day and are all looking forward to another one today!
happy labor day!
will write later... love.
we spent yesterday relaxing again, sherry and wayne brought over donuts that we sampled all day.. I love when I see a box of assorted donuts because the delicious flavors and curiosity of the fillings make me soda excited and I spend all day thinking... do i like cake donuts, especially blueberry? what does a strawberry yeast donut taste like? does that one have custard in it, or just whipped cream on top? hmmm... maybe I'll just have an inch of each. but on the other hand, if it were a box of plain glazed donuts, i'd have a half of one and be fine the rest of the day! Hope that happens to everyone...
Then there was the chicken soup.. delicious chicken soup made with love by amy.. we asked mom how she likes it (lots of onion, little garlic, white meat chicken...) and boy did she like it!! she had 2 bowls! and let's not forget the shrimp and crab stuffed sole from gerry (alee's).. she loved that and is so happy that she has enough for like 4 days!! I know it sounds like all we do is eat.. but really we're visiting a lot in between the eating! oh, and resting too..
Jasmine came for a visit.. she was such a helpful little nugget all day asking meema if she wanted drinks or dinner or ice cream... and making arts and crafts.. she comes up with the craziest things! mom was so happy to see her and mary.
we had a great day and are all looking forward to another one today!
happy labor day!
will write later... love.
Saturday, September 4, 2010
day 39 an amazing day
Hi everyone.. we have had such an amazing day.. mom slept well.. 11-8 without any interruptions.. and spent the day being waited on! We've just finished dinner (spaghetti and meatballs) and she's already wondering what kind of ice cream we have for dessert! (we bought 5 different kinds.. so I think she'll find something she likes!) We have spent the day thanking god for this time with mom. we don't have very much to talk about.. I guess all we can say is that she's happy.. that is what's important. she's feeling good, looking good and is in really good spirits...
we've asked mom what she wants to talk about tonight.. and it's all about the food.. i bet you're surprised..
she had a delicious bagel from panera.. cinnimon crunch with hazlenut cream cheese, we made a sub with dish soap washed vegetables.. not too bad, i have to say.. and the spaghetti and meatballs were delicious! she had the best night sleep in 40 days.. that must be a record, because she usually only sleeps like 3-4 hours at a time and last night was 9 hours! she's looking forward to another 8 hours tonight!
time to flush lines and take pills.. she's happy now.. but in like 2 minutes she'll be wishing we were gone! just kidding..
chat later.
love.
we've asked mom what she wants to talk about tonight.. and it's all about the food.. i bet you're surprised..
she had a delicious bagel from panera.. cinnimon crunch with hazlenut cream cheese, we made a sub with dish soap washed vegetables.. not too bad, i have to say.. and the spaghetti and meatballs were delicious! she had the best night sleep in 40 days.. that must be a record, because she usually only sleeps like 3-4 hours at a time and last night was 9 hours! she's looking forward to another 8 hours tonight!
time to flush lines and take pills.. she's happy now.. but in like 2 minutes she'll be wishing we were gone! just kidding..
chat later.
love.
Friday, September 3, 2010
day 38.. a needed break
Hi!! So a little surprise.. mom's home! We're sitting in the living room, she's enjoying some kentucky fried chicken, already asking about ice cream.. and we're all sitting here in disbelief that she's actually here.. the ride home was uneventful, a little rain through rochester, but mom handled the ride just fine! We don't have the fireplace on.. um.. it's a little warm out and even with the air on high all day, it's not fireplace weather in the living room (thank god, because we were all nervous that it was going to be like a sweat lodge in here!)
though mom was happy to get out of there, she had a hard time saying goodbye to all the people who have spent the last 38 days taking care of her.. she handed out many flax bags, promised more bags and cookies, and hugged everyone. we can't say enough good about the staff there.. they did everything they could to make sure mom was happy (well, as happy as one could be under the circumstances!)
we didn't know until after noon that she was even coming home, so amy and I rushed around all afternoon getting the house in tip top shape.. along with paul, ed, lauren, aunt eva (thank god... she's a super cleaner) and adam. mom approves, so we're all happy.
mom is looking forward to not being bugged all night and being able to sleep in.. in fact, she hopes to sleep all day tomorrow.. right through her pills, right through dad's physical therapy, just not through her meals :)
I guess that's all for tonight.. everyone is talking so this very short blog entry has taken me like 45 minutes already... grrrrrr.
we'll update more tomorrow! thanks again for your prayers.
love.
though mom was happy to get out of there, she had a hard time saying goodbye to all the people who have spent the last 38 days taking care of her.. she handed out many flax bags, promised more bags and cookies, and hugged everyone. we can't say enough good about the staff there.. they did everything they could to make sure mom was happy (well, as happy as one could be under the circumstances!)
we didn't know until after noon that she was even coming home, so amy and I rushed around all afternoon getting the house in tip top shape.. along with paul, ed, lauren, aunt eva (thank god... she's a super cleaner) and adam. mom approves, so we're all happy.
mom is looking forward to not being bugged all night and being able to sleep in.. in fact, she hopes to sleep all day tomorrow.. right through her pills, right through dad's physical therapy, just not through her meals :)
I guess that's all for tonight.. everyone is talking so this very short blog entry has taken me like 45 minutes already... grrrrrr.
we'll update more tomorrow! thanks again for your prayers.
love.
Thursday, September 2, 2010
Day 37
Hi. just a quick update for now...
mom continues to get stronger, happier, healthier and more anxious to get home! her numbers were mixed today.. some slightly better, some slightly worse, but nothing drastic to report.. because her liver enzymes continue to improve, they are probably giving her a half dose of chemo tomorrow and she'll be discharged saturday. That is the plan for now... things could change by morning!
mom is looking forward to a quiet, restful time at home.. we are going to be sure she gets that! her doctors have stressed that this time home is essential to mom's recovery and healing process, and we need to be sure she is spending her time getting better, not catching up.. i hope that doesn't sound too harsh.. I'm just repeating what the doctors said! I know that all of you agree, we have to stay focussed on the long term goal, getting mom healthy for good. (mom has asked that you don't just "stop in quick"; please call before coming to see if she's up to visiting.. also.. she asked that you don't bring any food, she's not sure what she can even eat and would hate for things to go to waste!)
while most of us are praying for good weather for Labor Day weekend, mom's hoping that the hurricane will come up the coast and bring cool weather.. she's praying she can sit in front of her fireplace! Amy and dad said if it is nice weather, we'll turn the air on high, then put the fireplace on too so she can warm up by it. :) your wish is our command, mom!!
k, dad is pulling in the parking garage now.. I'm gong home to get mom's room ready and with luck, mom will be resting comfortably at home on saturday night!!
chat later.
love.
mom continues to get stronger, happier, healthier and more anxious to get home! her numbers were mixed today.. some slightly better, some slightly worse, but nothing drastic to report.. because her liver enzymes continue to improve, they are probably giving her a half dose of chemo tomorrow and she'll be discharged saturday. That is the plan for now... things could change by morning!
mom is looking forward to a quiet, restful time at home.. we are going to be sure she gets that! her doctors have stressed that this time home is essential to mom's recovery and healing process, and we need to be sure she is spending her time getting better, not catching up.. i hope that doesn't sound too harsh.. I'm just repeating what the doctors said! I know that all of you agree, we have to stay focussed on the long term goal, getting mom healthy for good. (mom has asked that you don't just "stop in quick"; please call before coming to see if she's up to visiting.. also.. she asked that you don't bring any food, she's not sure what she can even eat and would hate for things to go to waste!)
while most of us are praying for good weather for Labor Day weekend, mom's hoping that the hurricane will come up the coast and bring cool weather.. she's praying she can sit in front of her fireplace! Amy and dad said if it is nice weather, we'll turn the air on high, then put the fireplace on too so she can warm up by it. :) your wish is our command, mom!!
k, dad is pulling in the parking garage now.. I'm gong home to get mom's room ready and with luck, mom will be resting comfortably at home on saturday night!!
chat later.
love.
Wednesday, September 1, 2010
Day 36 Great news!!
Hi everyone!!! Boy, i've missed being here with mom! I am so happy to report some great news that we received today.. They've given mom the green light to come home for a little break!! yipee!
Here's the plan... mom's liver enzymes weren't low enough to get the chemo yesterday or today.. so the doctors are going to let her skip this dose. On Friday, if her liver enzymes improve, she will get chemo, possibly a reduced dose, then they'll discharge her on saturday.. if the liver enzymes are still high on friday, she'll skip the chemo and just come home!! She'll get blood work done on tuesday locally and they'll fax the results to Roswell.. as long as her counts continue in the right direction, she'll stay home. On Thursday (9/9) she'll go back to Roswell for a bone marrow biopsy, and hopefully that will show less than 1% blasts!! Then we can officially say she's in remission... if all goes well, she'll stay home for another week! she'll have to report back to Buffalo on thursday, September 16 and start course 2 (outpatient, so she'll be at the Hope Lodge!)
so right now I bet some of you are wondering.... why is it ok to skip 2 doses of chemo? right.. we've thought the same thing.. here's how Sheila explained it: on the old protocol once a patient was below 5% blasts, they were considered in remission. on the protocol that mom is on (the one children use) the doctors give more chemo and want the blasts below 1%.. so technically, she already is in remission, but they kept her here to do course 1A just to get her below that 1%.
Mom is in very good spirits.. still tired, but that's because she's been busy all day! They come and go non stop from 7am to 9pm and then the nurses still come in at 11, 4 and 6.. then we start all over again. So, even though she spends a majority of the day in bed, she's never really resting. She walked a bunch today, talked a lot and made everybody laugh. she's acting a little more like Rita everyday!
Dad is coming out tomorrow to prep for mom coming home.. we'll be giving shots, meds and flushing her lines, so we need to learn how to do all of this.. I've already learned to flush lines and tonight I get to give her the shot in the belly! I thought i'd be grossed out by the thought of this, but it's so great to see mom getting better that I just want to be as much a part of it as I can!
I'll be leaving once dad gets here (short visit for me, but mom coming home is better than me being out here with her!) so I'll get the house prepared for her arrival.. sanitizing the bathroom and the kitchen, washing blankets, sheets, setting up the air purifiers.. etc.. I'll be busy friday morning! :) I can't remember if i've already said.. but we set up a bedroom downstairs so she'll be all set!
one little story before we say good night.... when arrived earlier, I got into the room and dropped my bags, almost yanking one of my arms off in the process.. and amy, mom and I were having a good time talking, laughing, catching up.... then mom had to go to the bathroom.. so we both helped her to the commode and while we were standing there waiting, I felt something on my arm.. so I thought.. hmm... maybe it's just the sensation of almost having my arm ripped off from heavy bags... no, no.. much lighter than that would feel... hmmmmmm... maybe one of my stupid hairs is on me, like one that fell out and was just lightly touching my arm (I call those hairs spiders because that's what I imagine spiders would feel like if they were crawling around on my skin) so I brushed off my arm.. and felt something with my hand.. I tried to ignore it.. but just as i suspected... I looked and it was a real spider... yes it was huge.. ask amy (if you know me at all you'll know that I would rather wrestle an alligator than have a spider crawl on me..seriously) k, well I screamed but tried to make it an inside voice scream so i wouldn't scare mom (still sitting on the commode) or the nurses.. I thought I was going to die. I brushed it off.. or maybe it jumped, it looked like one of those really mean jumping spiders with fangs.. so it was on the bed now.. I was trying to whack it with a package of "wet ones"... didn't work too well, so I took off my flip flop and beat it to death on moms bed.. almost getting bit on the hand in the process... mom stayed cool and calm and said "just scoot it under the bed pad, i'll lay on it and squish it." No worries mom.. I already handled it.. and then it took both amy and i with lots of napkins and wet ones to get it into the garbage.. whew.. close call. that could have been disasterous. mom was proud of how brave we were. dad.. you would have been too.
k, mom's resting, probably trying to trick the nurses into thinking she's sleeping so they won't bother her with her 9pm pills.. she's always trying some sort of trickery around here.. so we'll say goodnight and chat more tomorrow.
I'm going to try not to think about where the spider came from, how it ended up on me and pray that there isn't a nest in here.. come on.. it could happen...
wish us luck!
love.
Here's the plan... mom's liver enzymes weren't low enough to get the chemo yesterday or today.. so the doctors are going to let her skip this dose. On Friday, if her liver enzymes improve, she will get chemo, possibly a reduced dose, then they'll discharge her on saturday.. if the liver enzymes are still high on friday, she'll skip the chemo and just come home!! She'll get blood work done on tuesday locally and they'll fax the results to Roswell.. as long as her counts continue in the right direction, she'll stay home. On Thursday (9/9) she'll go back to Roswell for a bone marrow biopsy, and hopefully that will show less than 1% blasts!! Then we can officially say she's in remission... if all goes well, she'll stay home for another week! she'll have to report back to Buffalo on thursday, September 16 and start course 2 (outpatient, so she'll be at the Hope Lodge!)
so right now I bet some of you are wondering.... why is it ok to skip 2 doses of chemo? right.. we've thought the same thing.. here's how Sheila explained it: on the old protocol once a patient was below 5% blasts, they were considered in remission. on the protocol that mom is on (the one children use) the doctors give more chemo and want the blasts below 1%.. so technically, she already is in remission, but they kept her here to do course 1A just to get her below that 1%.
Mom is in very good spirits.. still tired, but that's because she's been busy all day! They come and go non stop from 7am to 9pm and then the nurses still come in at 11, 4 and 6.. then we start all over again. So, even though she spends a majority of the day in bed, she's never really resting. She walked a bunch today, talked a lot and made everybody laugh. she's acting a little more like Rita everyday!
Dad is coming out tomorrow to prep for mom coming home.. we'll be giving shots, meds and flushing her lines, so we need to learn how to do all of this.. I've already learned to flush lines and tonight I get to give her the shot in the belly! I thought i'd be grossed out by the thought of this, but it's so great to see mom getting better that I just want to be as much a part of it as I can!
I'll be leaving once dad gets here (short visit for me, but mom coming home is better than me being out here with her!) so I'll get the house prepared for her arrival.. sanitizing the bathroom and the kitchen, washing blankets, sheets, setting up the air purifiers.. etc.. I'll be busy friday morning! :) I can't remember if i've already said.. but we set up a bedroom downstairs so she'll be all set!
one little story before we say good night.... when arrived earlier, I got into the room and dropped my bags, almost yanking one of my arms off in the process.. and amy, mom and I were having a good time talking, laughing, catching up.... then mom had to go to the bathroom.. so we both helped her to the commode and while we were standing there waiting, I felt something on my arm.. so I thought.. hmm... maybe it's just the sensation of almost having my arm ripped off from heavy bags... no, no.. much lighter than that would feel... hmmmmmm... maybe one of my stupid hairs is on me, like one that fell out and was just lightly touching my arm (I call those hairs spiders because that's what I imagine spiders would feel like if they were crawling around on my skin) so I brushed off my arm.. and felt something with my hand.. I tried to ignore it.. but just as i suspected... I looked and it was a real spider... yes it was huge.. ask amy (if you know me at all you'll know that I would rather wrestle an alligator than have a spider crawl on me..seriously) k, well I screamed but tried to make it an inside voice scream so i wouldn't scare mom (still sitting on the commode) or the nurses.. I thought I was going to die. I brushed it off.. or maybe it jumped, it looked like one of those really mean jumping spiders with fangs.. so it was on the bed now.. I was trying to whack it with a package of "wet ones"... didn't work too well, so I took off my flip flop and beat it to death on moms bed.. almost getting bit on the hand in the process... mom stayed cool and calm and said "just scoot it under the bed pad, i'll lay on it and squish it." No worries mom.. I already handled it.. and then it took both amy and i with lots of napkins and wet ones to get it into the garbage.. whew.. close call. that could have been disasterous. mom was proud of how brave we were. dad.. you would have been too.
k, mom's resting, probably trying to trick the nurses into thinking she's sleeping so they won't bother her with her 9pm pills.. she's always trying some sort of trickery around here.. so we'll say goodnight and chat more tomorrow.
I'm going to try not to think about where the spider came from, how it ended up on me and pray that there isn't a nest in here.. come on.. it could happen...
wish us luck!
love.
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