Today is going a little better. Mom feels better but is having some pain in her back. The Physical Therapist came in and since Mom's blood pressure is still changing pretty dramatically when she stands up, she wasn't able to do as much as we had hoped for.
Her liver enzymes are improving, but they are still going to hold off on the next chemo treatment until Dr. Griffith makes the decision tomorrow. Dr. Wetzler said that if she does the chemo tomorrow and improves quickly after that, they MAY consider sending her home Friday. If she isn't sent home Friday then she'll have to wait until next Tuesday (because of the holiday) to be re-assessed.
Mom is resting now. She's done great with her pills so far today. One of the nurses last night, Suzette, came up with an idea for her Prednisone that they sometimes do in Pediatrics. She cut the pill in half and jammed it into a gel cap casing so that when Mom takes it she won't have that awful taste she hates so much. She was happy about that. She started to complain that it was a little too big but I reminded her that she would easily swallow a shrimp twice that size and she smiled and popped it in her mouth. I think that will really help with her Prednisone. She had them cut it into such small pieces that it was like she had to take 4 pills. Now they are able to put the entire pill in the capsule so it helps a little. She'll take all the help she can get with that dang pill.
She hopes everyone is well and sends her love to everyone and thanks you all for your support.
Love,
Amy
Tuesday, August 31, 2010
Monday, August 30, 2010
Day 34
Hi Everyone,
Mom is taking a little nap right now. She has a lot of stuff that goes on all during the day so in between she is always thankful when I leave her alone for a few minutes.
Early this morning Mom's blood pressure was a little high when she was laying down. They tried to remedy that by giving her some hydrolazene to lower it a bit but they weren't fully aware of her blood pressure lowering when she sat up and stood up, so it kind of negated a little bit of the progress we had made. She got light headed and had a little double vision but has since gotten a lot better. Sheila said they have noted her file to make sure this doesn't happen again. It's nothing major, just a rumble strip in the road.
Her blood cell counts are very good today - all moving in the right direction. Her liver enzymes are still high so we have postponed the chemo she was supposed to do today until tomorrow. Dr. Wetzler said she could rest today and didn't have to get up if she didn't want to. She gleamed at me triumphantly to make sure I heard that one... she loves resting.
The Physical Therapist just stopped in and Mom got to tell her to take a hike. I think it was like her little victory. So far I think it's Physical Therapists 15 - Mom 1. At least it wasn't a shut-out.
Mom is so happy that Sarah and Aaron welcomed a little baby boy, Levi, into the world today. She's telling all the nurses. She told Sheila about the baby right after Mom guessed the date was late November so Sheila was skeptical at first, but since I corroborated her story and she changed her mind and said it was late August she passed her quiz today.
Well, the therapists just stopped back in - looks like we were wrong. They are going to try and get her to take a lap around the floor. Mom's a little disappointed and feels a little misled, but I think it will be good for her. Up to 16-zip I guess. She'll get them one of these days.
The therapist Kevin was very nice. He was snapping his fingers and getting Mom to sing "She'll Be Coming Around the Mountain" with him while she danced a little. She didn't make it around the floor but she was up and moving around for almost 10 minutes so that's great! She total Sheila that Kevin was nice but she still wants to poke them all in the eye.
Dinner should arrive shortly and then she'll move back to bed for some relaxing before the nightly pills. She sends her love to all and thanks everyone for all the support.
Love,
Amy
Mom is taking a little nap right now. She has a lot of stuff that goes on all during the day so in between she is always thankful when I leave her alone for a few minutes.
Early this morning Mom's blood pressure was a little high when she was laying down. They tried to remedy that by giving her some hydrolazene to lower it a bit but they weren't fully aware of her blood pressure lowering when she sat up and stood up, so it kind of negated a little bit of the progress we had made. She got light headed and had a little double vision but has since gotten a lot better. Sheila said they have noted her file to make sure this doesn't happen again. It's nothing major, just a rumble strip in the road.
Her blood cell counts are very good today - all moving in the right direction. Her liver enzymes are still high so we have postponed the chemo she was supposed to do today until tomorrow. Dr. Wetzler said she could rest today and didn't have to get up if she didn't want to. She gleamed at me triumphantly to make sure I heard that one... she loves resting.
The Physical Therapist just stopped in and Mom got to tell her to take a hike. I think it was like her little victory. So far I think it's Physical Therapists 15 - Mom 1. At least it wasn't a shut-out.
Mom is so happy that Sarah and Aaron welcomed a little baby boy, Levi, into the world today. She's telling all the nurses. She told Sheila about the baby right after Mom guessed the date was late November so Sheila was skeptical at first, but since I corroborated her story and she changed her mind and said it was late August she passed her quiz today.
Well, the therapists just stopped back in - looks like we were wrong. They are going to try and get her to take a lap around the floor. Mom's a little disappointed and feels a little misled, but I think it will be good for her. Up to 16-zip I guess. She'll get them one of these days.
The therapist Kevin was very nice. He was snapping his fingers and getting Mom to sing "She'll Be Coming Around the Mountain" with him while she danced a little. She didn't make it around the floor but she was up and moving around for almost 10 minutes so that's great! She total Sheila that Kevin was nice but she still wants to poke them all in the eye.
Dinner should arrive shortly and then she'll move back to bed for some relaxing before the nightly pills. She sends her love to all and thanks everyone for all the support.
Love,
Amy
Sunday, August 29, 2010
Day 33
Hello All,
It's Amy. I've come to relieve Dad and Lisa for a few days while Lisa gets back into the swing of things at home. She'll be heading back to school and I'll be taking over. Everyone's employers have been very accommodating and mine is no exception - they are allowing me to work from the laptop so I can stay with Mom.
Mom is sleeping peacefully. She just had some lunch and wants to rest her eyes for a little while before she has to get up and sit in the chair. She has to do some physical therapy when she gets up that I don't think she is looking forward to. She's already tried to trick me into thinking she's done her session already today but she's not a very good liar. Picture a little kid covered in lipstick telling you they didn't get into your makeup - it's written all over her face.
Mom is feeling much better today. She looks great and is very thankful for the beautiful hat that Sharon sent her. It's purple and has a big flower in it. She looks like she could be on her way to a party at Gatsby's Mansion! It really is so pretty.
She doesn't have much planned for the rest of the day. Just dinner, pills and catching me up to speed so that I know what to do to help. Poor thing - she's just had to go through this with Lisa and Dad and now she's got another rookie to train. I hope to get acclimated soon and make the adjustment as easy as possible for her.
- Amy
It's Amy. I've come to relieve Dad and Lisa for a few days while Lisa gets back into the swing of things at home. She'll be heading back to school and I'll be taking over. Everyone's employers have been very accommodating and mine is no exception - they are allowing me to work from the laptop so I can stay with Mom.
Mom is sleeping peacefully. She just had some lunch and wants to rest her eyes for a little while before she has to get up and sit in the chair. She has to do some physical therapy when she gets up that I don't think she is looking forward to. She's already tried to trick me into thinking she's done her session already today but she's not a very good liar. Picture a little kid covered in lipstick telling you they didn't get into your makeup - it's written all over her face.
Mom is feeling much better today. She looks great and is very thankful for the beautiful hat that Sharon sent her. It's purple and has a big flower in it. She looks like she could be on her way to a party at Gatsby's Mansion! It really is so pretty.
She doesn't have much planned for the rest of the day. Just dinner, pills and catching me up to speed so that I know what to do to help. Poor thing - she's just had to go through this with Lisa and Dad and now she's got another rookie to train. I hope to get acclimated soon and make the adjustment as easy as possible for her.
- Amy
Saturday, August 28, 2010
Day 32
There is nothing much new to report today. Rita did get a reduced dose of chemo last night. It finished around 10:00 PM and she was ready for some sleep afterwards. Today, her bilirubin improved some and that’s good because she needs to have that clear up before they will give her more chemo. She needs more chemo to get to remission. It’s a bit of a balancing act as when she does get the chemo, it is filtered out by the liver - that could lead to elevated levels of bilirubin so, the doctors have to keep adjusting accordingly. She has been up for awhile but needed to get back to bed and rest to get charged back up. She was in a little pain so she took a pain pill (morphine) and that made her feel better. She is resting comfortably now. The doctors have pretty much said that they will decide what to do on a daily basis based on how Rita's blood work looks each day. They take blood every AM at 4:00 and results come back pretty quickly so the doctors will have the information during their morning meetings to decide what to do. Now I understand better what the doctors meant on the very first day when they told us that we would need to take this one day at a time. It’s not just a cliché.
Amy will be out tomorrow to take over for a few days. Then, Lisa will be here Thursday and Friday. I will go back to work and plan on returning next weekend unless things change.
OK - Take Care, Dave.
Amy will be out tomorrow to take over for a few days. Then, Lisa will be here Thursday and Friday. I will go back to work and plan on returning next weekend unless things change.
OK - Take Care, Dave.
Friday, August 27, 2010
Day 31 - Final Results on Biopsy
Well, the new is disapointing. We didn't get the report we wanted. Rita needed to be a less than 1% lymphoblasts on the flow cytometry but is at 3%. This means we will need to go to course Ia which will start later today. While this course is scheduled for 14 days, we will need to play it by ear a little because alot will depend on how Rita can tolerate it. It could be should be shorter or longer. They are going to start her on reduced doses (25%) at first to see how see reacts.
I wish I had better news but, this is just another one of those speed bumps. We are going to continue to work with the physical therapists to get Rita strong so that she can tolerate this next phase. She did get up all morning and completed a full lap around the nurses station with the help of the therapist and a walker.
Thats it for now, Dave
I wish I had better news but, this is just another one of those speed bumps. We are going to continue to work with the physical therapists to get Rita strong so that she can tolerate this next phase. She did get up all morning and completed a full lap around the nurses station with the help of the therapist and a walker.
Thats it for now, Dave
Thursday, August 26, 2010
Day 30 - Evening update
OK - as I said yesterday, we feel each day is going to get better now. Today definately was. Rita was way more active, had a much better attitude and is getting stronger. She did excerises, was up in the chair for dinner and is now enjoying a well deserved rest. Only the 9:00 PM pills and shot and she will have the rest of the day off. I will be watching a little NFL on ESPN and probably drift off myself. I think our sleep will be a little more peaceful tonight as we both feel that Rita has passed course I with flying colors. Confirmation to come tomorrow and the, we will be working on getting her home for a brief respite before course II starts. Thats our next goal - this will be a series of attaining these little goals and my money is on Rita.
Thats it for tonight - Take care, Dave
Thats it for tonight - Take care, Dave
Day 30 - Biopsy Update
Sorry this is so late in the day but we didn't get any report until just a little while ago. The prliminary report is less than 1% lymphoblasts!! The reason this is preliminary is that this comes from pathology. There is another report called flow cytometry won't be available until tomorrow so, we need to wait one more day to offically be able to say that Rita is in remission. The flow cytometry also needs to be less than 1% lymphoblasts in order to have Rita be in remission. One more night of extra prayers please!! If Rita is in remission, then we will be on our way to course II. Rita has some conplications that will need to resolve before she can come home for a respit so we hope to see improvement in her liver function, orthostatics and overall strength. She is working hard on these things. She did sit up in the chair for over an hour earlier today and a little while ago, Shelia and Eileen (today's nurse) assisted her as she walked to the bathroom - no minor feat!! She did great and Shelia said she hardly had to help her. Well, physical therapist just came in so its exercise time. I'll have to finish this a little later but will post it now so you can at least have this info.
Wednesday, August 25, 2010
Day 29 - Evening Update
Hello All. Rita is asking me to post this blog for her. She wants you to know that she is overwhelmed by all of your thoughts and prayers. She did not have a great day today but feels that, maybe, the worse is behind her. We are anxiously awaiting the results of the bone marrow biopsy and CNS fluid and hoping that each day will bring gradual improvement. She is sooooo looking forward to the Pasta Roni with shrimp and peas dinner that I brought for her (I hope that I can summon all of my cooking skills for this one) and, she can't wait to be able to go home. We should find out some information regarding that over the next few days. Rita is asking for you to say an extra prayer for her tonight - she could really use good news tomorrow.
She sends her love to all and so do I, Dave :) (or as Jaz taught me <3)
She sends her love to all and so do I, Dave :) (or as Jaz taught me <3)
day 29 Bone marrow biopsy and intrathecal...
9:00 am signing of consent forms.. hooking up to heart monitor (blaring alarms.. grrrr)
9:20 Dr's and nurses all in the room. Dr. Wetzler is checking over instruments, monitor connections, etc. the heart monitor is acting up (already on our second one.. maybe she fritzed out the first one with her electricity.. kelly, sound familiar?) ok.. we're getting meds.. and a new blood pressure cuff. Dad and i are here watching.. and here we go! be back in a minute.. i'll save you the details of the actual procedure...
9:40 done with bone marrow biopsy.. mom just told Dr. Wetzler she liked it better here than going downstairs for the procedure.. so she's awake and kind of paying attention, but feels nothing.... preping for the lumbar puncture and intrathecal chemotherapy...and... be right back...
10:03 ok. done, just bandaging up.. then she'll lay flat for 1 hour. she's talking to the nurses.. she heard everything but did not feel anything.. that's all we care about. now it's a waiting game. We had a Dr in her fellowship program do the intrathecal.. took WAY longer than when Dr. Griffiths did it.. but it's done and I guess Dr's need to learn somehow..
Everything is ok, she's bandaged up, ready to roll over and will probably sleep for a while.. I'm signing off, leaving soon and dad will take over..
as soon as we hear information we'll get it out to you.. we are all very anxious..
love.
9:20 Dr's and nurses all in the room. Dr. Wetzler is checking over instruments, monitor connections, etc. the heart monitor is acting up (already on our second one.. maybe she fritzed out the first one with her electricity.. kelly, sound familiar?) ok.. we're getting meds.. and a new blood pressure cuff. Dad and i are here watching.. and here we go! be back in a minute.. i'll save you the details of the actual procedure...
9:40 done with bone marrow biopsy.. mom just told Dr. Wetzler she liked it better here than going downstairs for the procedure.. so she's awake and kind of paying attention, but feels nothing.... preping for the lumbar puncture and intrathecal chemotherapy...and... be right back...
10:03 ok. done, just bandaging up.. then she'll lay flat for 1 hour. she's talking to the nurses.. she heard everything but did not feel anything.. that's all we care about. now it's a waiting game. We had a Dr in her fellowship program do the intrathecal.. took WAY longer than when Dr. Griffiths did it.. but it's done and I guess Dr's need to learn somehow..
Everything is ok, she's bandaged up, ready to roll over and will probably sleep for a while.. I'm signing off, leaving soon and dad will take over..
as soon as we hear information we'll get it out to you.. we are all very anxious..
love.
Tuesday, August 24, 2010
day 28.. evening news..
I know most of you are already sleeping, or at least signed off for the night.. but I promised I'd write and tomorrow is starting off with a bang again, so i'm not sure when i'll be updating.
in less than 12 hours we might be done with course 1.. we have a 9am appointment with Dr. Wetzler for the bone marrow biopsy and last intrathecal chemo treatment of the induction phase.. this crucial test will tell us if mom's in remission or if we need to proceed with more chemotherapy, putting us into course 1A. the test doesn't take long at all.. both procedures will be done while mom is conciously sedated.. she usually says some funny stuff during this time.. and takes maybe 30 minutes.. i can't really remember because i was too busy watching what Dr. Griffiths was doing last time to pay attention to how long it took.. anyways.. mom will lay flat for 1 hour to prevent a headache (from changes in spinal fluid pressure) and will probably feel fine shortly after that. then we wait.. 24 hours maybe we'll know.. 24 hours.. that is a lot of time for praying.. this is an important milestone in mom's road to recovery.. if we get the "all clear" then we start to plan mom's respite.. a time to recharge her batteries and prepare for the next challenge! course 2.
all mom's tests from yesterday and today came back normal, clear, healthy, etc.. she's on the right track, we guess this is just how she reacts to the chemo and we'll learn to adjust accordingly.
i'm sitting here in my little fort-bed realizing that this might be my last night here.. i mean, i'll be out in buffalo, but this could be my last night in 5419 5W.. dad will be here tomorrow morning, and thursday, then depending on the results and discharge plans.. dad will stay through the weekend or go home thursday night, while sherry comes for a visit, then he'll return friday through sunday or monday.. so many possiblilties.. soon we'll know..
I just can't believe that this time went so fast.. 28 days done.. I hope I remember that next time i set a goal and try to quit after 3 hours.. when you put your mind to something and accept that it's the best possible choice, you can do anything.. I said that to mom a lot.. we remember writing on day 2 or 3.. thinking how are we going to get through 29 days of this.. it's going to be so boring... just sitting here.. doing nothing.. lying in a bed, or sitting in a chair.. and here we are.. we can't catch a breath we're so busy with tests and "visitors"... intruders as mom calls them...
one of the nurses asked if moms personality has changed at all.. I guess prednisone sometimes and temporarily makes people a little ill-tempered.. I didn't think so.. but in the past few days I have noticed she wants to see the nurses less and less and doesn't want to ask questions because she wants them to leave her alone.. is having dreams of me telling them off.. and is asking people to come back later... all very politely and in a kind of funny, dramatic way.. like earlier when a physical therapyist stopped in mom said.. "oh. no..are you serious.. i'm just getting done with an EEG and i haven't even had breakfast".. so the girl said she'd come back later.. while sheila was in, mom said "I hope that physical therapy lady doesn't come back later.. i feel like bonking her over the head with her exercise bar"...we both burst out laughing.. and mom said.. "what .. i'm serious!" i didn't notice how ill-tempered she had become until that nurse asked me.. it is cracking me up.. just because normaly she is so friendly and polite and loves to chat.. now she pretends she's sleeping, or just smiles and nods so they'll go faster! she won't be on prednisone in course 2 or 3 so she'll return to normal soon!! though she has been entertaining....
alright. enough for tonight. I think i might be rambling..
talk to you tomorrow..
love.
in less than 12 hours we might be done with course 1.. we have a 9am appointment with Dr. Wetzler for the bone marrow biopsy and last intrathecal chemo treatment of the induction phase.. this crucial test will tell us if mom's in remission or if we need to proceed with more chemotherapy, putting us into course 1A. the test doesn't take long at all.. both procedures will be done while mom is conciously sedated.. she usually says some funny stuff during this time.. and takes maybe 30 minutes.. i can't really remember because i was too busy watching what Dr. Griffiths was doing last time to pay attention to how long it took.. anyways.. mom will lay flat for 1 hour to prevent a headache (from changes in spinal fluid pressure) and will probably feel fine shortly after that. then we wait.. 24 hours maybe we'll know.. 24 hours.. that is a lot of time for praying.. this is an important milestone in mom's road to recovery.. if we get the "all clear" then we start to plan mom's respite.. a time to recharge her batteries and prepare for the next challenge! course 2.
all mom's tests from yesterday and today came back normal, clear, healthy, etc.. she's on the right track, we guess this is just how she reacts to the chemo and we'll learn to adjust accordingly.
i'm sitting here in my little fort-bed realizing that this might be my last night here.. i mean, i'll be out in buffalo, but this could be my last night in 5419 5W.. dad will be here tomorrow morning, and thursday, then depending on the results and discharge plans.. dad will stay through the weekend or go home thursday night, while sherry comes for a visit, then he'll return friday through sunday or monday.. so many possiblilties.. soon we'll know..
I just can't believe that this time went so fast.. 28 days done.. I hope I remember that next time i set a goal and try to quit after 3 hours.. when you put your mind to something and accept that it's the best possible choice, you can do anything.. I said that to mom a lot.. we remember writing on day 2 or 3.. thinking how are we going to get through 29 days of this.. it's going to be so boring... just sitting here.. doing nothing.. lying in a bed, or sitting in a chair.. and here we are.. we can't catch a breath we're so busy with tests and "visitors"... intruders as mom calls them...
one of the nurses asked if moms personality has changed at all.. I guess prednisone sometimes and temporarily makes people a little ill-tempered.. I didn't think so.. but in the past few days I have noticed she wants to see the nurses less and less and doesn't want to ask questions because she wants them to leave her alone.. is having dreams of me telling them off.. and is asking people to come back later... all very politely and in a kind of funny, dramatic way.. like earlier when a physical therapyist stopped in mom said.. "oh. no..are you serious.. i'm just getting done with an EEG and i haven't even had breakfast".. so the girl said she'd come back later.. while sheila was in, mom said "I hope that physical therapy lady doesn't come back later.. i feel like bonking her over the head with her exercise bar"...we both burst out laughing.. and mom said.. "what .. i'm serious!" i didn't notice how ill-tempered she had become until that nurse asked me.. it is cracking me up.. just because normaly she is so friendly and polite and loves to chat.. now she pretends she's sleeping, or just smiles and nods so they'll go faster! she won't be on prednisone in course 2 or 3 so she'll return to normal soon!! though she has been entertaining....
alright. enough for tonight. I think i might be rambling..
talk to you tomorrow..
love.
day 28
Hi everyone. It used to be so easy to write during the day, but I feel like we've been pretty busy around here lately and it's easier to just update once at the end of the day.. but for now, since i have the time.. here's a little update.
mom's feeling pretty good today.. all of the test results that have come back are great.. still waiting on a few. We started early again, this morning with knocking on the door, tests, Dr's and nurses in and out.. mom thought I told them all off and asked them not to come back until after 9am. She couldn't actually believe it was just a dream.. she's a bit spunky today!!
She's started losing her hair.. not in clumps or anything, just thinning all over.. and i guess it's good news.. that means the chemo is working and that's what the doctors like to see.. bald patients.. it isn't bothering mom at all.. she's already wondering if she can tape some bangs into her hats, though.. i think it's a little weird, but what ever she wants.. I did find some hats online that have a "halo" of hair around the edge.. still sounds weird to me.. she thought she was the first one to think of that.. so she was disappointed that she won't be making millions on her idea (kind of like when she said to all of us.. you know what.. Dawn detergent should try to wash animals from the oil spill in their detergent and make a commercial out of it!! and we said.. like the one that's on tv? she couldn't believe they thought of it first!!)
we are hopefully going to get a shower for mom today, she's been on bed rest, but she got the OK to sit up in the chair and in the shower.. good news for the rest of us! no, just kidding... she looks just beautiful everyday! she even asked if she should put some blue eye shadow on today.. i mean, she keeps her lipstick close by at all times so why not eye shadow?
We have a few more tests to hear results on, so I'll be sure to update later when I get more information! I'm also going to check out some wigs for mom.. maybe another fashion show is in store!!
I want to share a little story that Andrea shared with us.. it made my heart smile, and it allowed me to take things into perspective and remember that I control my attitude....
A little old lady went to the mirror one morning and noticed that she had only three hairs on her head. As she looked into the mirror, she said, "I think I'll braid my hair today." That's exactly what she did. And, she had a great day.
The next morning, at the mirror once again, the little old lady noticed that she only had two hairs on her head. Looking herself right in the eye, she said, "Today, I think I'll part my hair down the middle." That's exactly what she did. And, she had a great day.
The next day, as the little old lady looked into the mirror, there was only one hair on her head. She looked at that one lonely hair and said, "Today I think I'll wear my hair in a pony tail." That's exactly what she did. And she had a great day.
The following morning the little old lady looked into the mirror and there wasn't a single hair on her head. Her eyes lit up, and she said, "Yeah! I don't have to fix my hair today!"
make it a good day.
love.
mom's feeling pretty good today.. all of the test results that have come back are great.. still waiting on a few. We started early again, this morning with knocking on the door, tests, Dr's and nurses in and out.. mom thought I told them all off and asked them not to come back until after 9am. She couldn't actually believe it was just a dream.. she's a bit spunky today!!
She's started losing her hair.. not in clumps or anything, just thinning all over.. and i guess it's good news.. that means the chemo is working and that's what the doctors like to see.. bald patients.. it isn't bothering mom at all.. she's already wondering if she can tape some bangs into her hats, though.. i think it's a little weird, but what ever she wants.. I did find some hats online that have a "halo" of hair around the edge.. still sounds weird to me.. she thought she was the first one to think of that.. so she was disappointed that she won't be making millions on her idea (kind of like when she said to all of us.. you know what.. Dawn detergent should try to wash animals from the oil spill in their detergent and make a commercial out of it!! and we said.. like the one that's on tv? she couldn't believe they thought of it first!!)
we are hopefully going to get a shower for mom today, she's been on bed rest, but she got the OK to sit up in the chair and in the shower.. good news for the rest of us! no, just kidding... she looks just beautiful everyday! she even asked if she should put some blue eye shadow on today.. i mean, she keeps her lipstick close by at all times so why not eye shadow?
We have a few more tests to hear results on, so I'll be sure to update later when I get more information! I'm also going to check out some wigs for mom.. maybe another fashion show is in store!!
I want to share a little story that Andrea shared with us.. it made my heart smile, and it allowed me to take things into perspective and remember that I control my attitude....
A little old lady went to the mirror one morning and noticed that she had only three hairs on her head. As she looked into the mirror, she said, "I think I'll braid my hair today." That's exactly what she did. And, she had a great day.
The next morning, at the mirror once again, the little old lady noticed that she only had two hairs on her head. Looking herself right in the eye, she said, "Today, I think I'll part my hair down the middle." That's exactly what she did. And, she had a great day.
The next day, as the little old lady looked into the mirror, there was only one hair on her head. She looked at that one lonely hair and said, "Today I think I'll wear my hair in a pony tail." That's exactly what she did. And she had a great day.
The following morning the little old lady looked into the mirror and there wasn't a single hair on her head. Her eyes lit up, and she said, "Yeah! I don't have to fix my hair today!"
make it a good day.
love.
Monday, August 23, 2010
day 27... did you think I forgot?
How could I forget! we have been so busy today, and we had so many uncertainties that I figured i'd just update once the dust settled.
the most important news of the day is.. mom is feeling great right now!
I already told you that mom has been fainting.. that's what we were working on today.. I would have let you know this very early this morning, except i woke up to the nurses aide trying to get mom to stand for her orthostatic pressure tests (they take blood pressure lying down, then sitting up, then standing to see how much the pressure has changed.) Well.. yesterday when they did this mom passed out and had a pretty scary episode.. she was shaking a bit, she was unresponsive.. dad wondered if she had a little seizure..... today I asked if they had to do this again, knowing the outcome, and the nurses aide said yes, we have the orders. OK.... well then go get a bunch more people because I want my mom to be safe.. I said.. so just as we suspected, they made her stand and she passed out.. eyes fluttered and she wouldn't respond. This only lasted 1 minute (try watching something simple for a minute.. it feels like an eternity).. as soon as she gets laying back down and the blood returns to her head she comes out of it.. needless to say this scared the you know what out of dad and I. so that was at about 6:30 or 7 am. The rest of the day went similar..
Sheila and Dr. Wetzler came in and wanted some tests done.. he ordered an ultrasound of her liver (so see why one of her liver enzymes is elevated.. probably a result of chemo), a CT scan of her brain (to rule out seizures and her double vision.. keep reading), an EEG and a visit from a neurologist. Dr. Wetzler said she doesn't look like a sick person, she's doing a great job.. that made mom happy.
The liver scan went fine.. everything is clear, so it is just a side effect from chemo.. whew..
The neurologist, a very nice middle eastern doctor, came in to learn about the seizures and double vision.. (like everyone on her right side had two lips.. not two whole faces, just two lips.. and sheila had three!) He had mom do a bunch of tests, push on my hand, lift your legs, touch your nose, then my finger.. all sorts of stuff to rule out any neurological issues.. and he was asking lots of questions at the same time (a little dose of her own medicine?) So he said, who are you, where are you, how old are you, what's the date... she got those right... who is the president? she said immediately, osama bin laden. he said... hmm.. think that one over and answer again.. she looked at him with her chin down, eyebrows raised and said very matter of factly.. I know what the answer is.. it's osama bin laden.. he said.. sounds like that.. but not quite.. well she started laughing when she realized what she said and appologized and finally got it right.. and kept appologizing. it was very funny, everyone laughed and it certainly lightened the mood. Nothing wrong neurologically.. that's another good sign.
The neurologist also had mom do the standing blood pressure (made me very nervous) and mom did great!! her pressure still dropped a bit, but so much better than the last two days.. whew..
While the neurologists were here, someone changed the CT scan to an MRI. mom already made Dr Wetzler clarify this morning saying ... it's a CT scan, not an MRI right? she kept asking.. Dr. Wetzler said.. well first we'll do a CT scan, then if we need more information, we'll do an MRI. Well it figures.. one of the doctors said just skip the CT scan, go straight to MRI.. mom panicked a bit.. Sheila cam in to tell us and gave mom a couple valium. That eased her mind and her body!! We went to the MRI, it took 40 minutes but the tech giving the MRI was so good, comforted mom, answered all her questions and even put a wash cloth over her eyes so she wouldn't feel claustrophobic. when it was all done, mom told the tech, that wasn't bad at all! That was one of her biggest fears and she will never be afraid of it again! even better, the MRI came back normal. They will read the films tomorrow with a special screen to look at the very fine details, but the prelims were normal!! whew..
we got back to a cold dinner, so i made some shrimp pasta for mom (thank god for wegmans!!) and she ate every last bite.. she's feeling so good, energetic, happy, chatty.. like normal..or as normal as she could be!
We will have the EEG tommorrow.. they came up a few times but we were either gone or busy!!
so what started out to be a pretty scary day, turned into a bunch of good news.. we guess this is just how mom responds to these chemo drugs... and as long as she's safe, we can get over these little speed bumps and keep on chugging along! We're hoping not as many people come to "visit" us tomorrow.. mom says there had to be 35 people here today... enough already!! :) We know they are doing the best job they can and are closely watching mom.
we've got one more project to tackle this evening.. the 9 oclock round of meds.. she can't wait to get cuddled into her blanket and watch the season finale of The Real Housewives of New Jersey.. so thank you all for being so patient.... I will try not to keep you waiting for so long tomorrow!
good night.
love.
the most important news of the day is.. mom is feeling great right now!
I already told you that mom has been fainting.. that's what we were working on today.. I would have let you know this very early this morning, except i woke up to the nurses aide trying to get mom to stand for her orthostatic pressure tests (they take blood pressure lying down, then sitting up, then standing to see how much the pressure has changed.) Well.. yesterday when they did this mom passed out and had a pretty scary episode.. she was shaking a bit, she was unresponsive.. dad wondered if she had a little seizure..... today I asked if they had to do this again, knowing the outcome, and the nurses aide said yes, we have the orders. OK.... well then go get a bunch more people because I want my mom to be safe.. I said.. so just as we suspected, they made her stand and she passed out.. eyes fluttered and she wouldn't respond. This only lasted 1 minute (try watching something simple for a minute.. it feels like an eternity).. as soon as she gets laying back down and the blood returns to her head she comes out of it.. needless to say this scared the you know what out of dad and I. so that was at about 6:30 or 7 am. The rest of the day went similar..
Sheila and Dr. Wetzler came in and wanted some tests done.. he ordered an ultrasound of her liver (so see why one of her liver enzymes is elevated.. probably a result of chemo), a CT scan of her brain (to rule out seizures and her double vision.. keep reading), an EEG and a visit from a neurologist. Dr. Wetzler said she doesn't look like a sick person, she's doing a great job.. that made mom happy.
The liver scan went fine.. everything is clear, so it is just a side effect from chemo.. whew..
The neurologist, a very nice middle eastern doctor, came in to learn about the seizures and double vision.. (like everyone on her right side had two lips.. not two whole faces, just two lips.. and sheila had three!) He had mom do a bunch of tests, push on my hand, lift your legs, touch your nose, then my finger.. all sorts of stuff to rule out any neurological issues.. and he was asking lots of questions at the same time (a little dose of her own medicine?) So he said, who are you, where are you, how old are you, what's the date... she got those right... who is the president? she said immediately, osama bin laden. he said... hmm.. think that one over and answer again.. she looked at him with her chin down, eyebrows raised and said very matter of factly.. I know what the answer is.. it's osama bin laden.. he said.. sounds like that.. but not quite.. well she started laughing when she realized what she said and appologized and finally got it right.. and kept appologizing. it was very funny, everyone laughed and it certainly lightened the mood. Nothing wrong neurologically.. that's another good sign.
The neurologist also had mom do the standing blood pressure (made me very nervous) and mom did great!! her pressure still dropped a bit, but so much better than the last two days.. whew..
While the neurologists were here, someone changed the CT scan to an MRI. mom already made Dr Wetzler clarify this morning saying ... it's a CT scan, not an MRI right? she kept asking.. Dr. Wetzler said.. well first we'll do a CT scan, then if we need more information, we'll do an MRI. Well it figures.. one of the doctors said just skip the CT scan, go straight to MRI.. mom panicked a bit.. Sheila cam in to tell us and gave mom a couple valium. That eased her mind and her body!! We went to the MRI, it took 40 minutes but the tech giving the MRI was so good, comforted mom, answered all her questions and even put a wash cloth over her eyes so she wouldn't feel claustrophobic. when it was all done, mom told the tech, that wasn't bad at all! That was one of her biggest fears and she will never be afraid of it again! even better, the MRI came back normal. They will read the films tomorrow with a special screen to look at the very fine details, but the prelims were normal!! whew..
we got back to a cold dinner, so i made some shrimp pasta for mom (thank god for wegmans!!) and she ate every last bite.. she's feeling so good, energetic, happy, chatty.. like normal..or as normal as she could be!
We will have the EEG tommorrow.. they came up a few times but we were either gone or busy!!
so what started out to be a pretty scary day, turned into a bunch of good news.. we guess this is just how mom responds to these chemo drugs... and as long as she's safe, we can get over these little speed bumps and keep on chugging along! We're hoping not as many people come to "visit" us tomorrow.. mom says there had to be 35 people here today... enough already!! :) We know they are doing the best job they can and are closely watching mom.
we've got one more project to tackle this evening.. the 9 oclock round of meds.. she can't wait to get cuddled into her blanket and watch the season finale of The Real Housewives of New Jersey.. so thank you all for being so patient.... I will try not to keep you waiting for so long tomorrow!
good night.
love.
Sunday, August 22, 2010
day 26
I just arrived about an hour ago.. it's been a little rocky today.. mom fainted again, and we're in the process of figuring out what's wrong. Most likely it's because of the round of chemo she had this past wednesday, but she'll be undergoing some tests tomorrow to rule a few things out. she feels ok as long as she's lying down, so that's how she'll stay until we know more. She was able to eat lunch and is napping now... she's pretty exhausted and hopes to be left alone for a while.. i'll make sure that happens.
just a quick update, i'll write more when I know more..
love.
just a quick update, i'll write more when I know more..
love.
Saturday, August 21, 2010
day 25
Hi everyone! I'm blogging from home so I'll keep this pretty short. I just spoke with dad and mom.. everything is going fine.. mom's a little orthostatic (light headed) again, so she's on bed rest... she has no problems with that!! They are having a relaxing weekend, many naps, lot's of hand holding and just enjoying each other's company..
Mom's been resting better with her new pain medication, so that's a big relief. I think it makes being there a bit more bearable!!
Mom's numbers are rising after her last chemo treatment.. everything is headed in the right direction!
we took care of the room at her house.. turning the den into a bedroom... Amy, Adam, Matt, Amanda, Jazzy, Joe Bowen, Brady, Travis, Paul and I .. and sanchnloo.. all pitched in and were done in no time! Thank you everyone!!! Mom was happy to hear she doesn't have to worry about it anymore!
will probably not write until tomorrow night, so I'll talk to you then!
love.
Mom's been resting better with her new pain medication, so that's a big relief. I think it makes being there a bit more bearable!!
Mom's numbers are rising after her last chemo treatment.. everything is headed in the right direction!
we took care of the room at her house.. turning the den into a bedroom... Amy, Adam, Matt, Amanda, Jazzy, Joe Bowen, Brady, Travis, Paul and I .. and sanchnloo.. all pitched in and were done in no time! Thank you everyone!!! Mom was happy to hear she doesn't have to worry about it anymore!
will probably not write until tomorrow night, so I'll talk to you then!
love.
Friday, August 20, 2010
day 24
well.. it's already friday, and that means I'll be going home today.. dad just called and is already on his way! yikes, I better get moving. I wondered how I would get time to pass when I first started coming out here, but let me tell you the days fly by.
Mom is doing fantastic.. she had a little scare last night, where she thought her heart was beating harder, so the nurse did an ekg, but everything was totally fine.. she then took a different pain med and a little bit stronger of a dose and she slept from 12:30-8 am without any interruption!! That's amazing. And, her back pain was gone. Sheila and I wish we could have convinced her of this weeks ago!! Anyways. She is resting well and feels fine. She's excited for dad to come.. they're going to work on her thank you notes, she said.. I have a feeling on Monday, i'll be writing the same thing... haha. I addressed all the envelopes for her yesterday, the stamps are ready to go.. now she just has to fill out the middle... baby steps, she says.
Dad bought a new mattress for the downstairs den at home, we're turning it into a bedroom for mom for when she comes home.. so we'll tackle that project this weekend.. it should only take us an hour to clean out the room and set up a bed frame.. shes been worrying about that room since we arrived here... hopefully this will put her mind at ease!
Dad had a great visit with Matt, Amanda, Paul and sanchnloo last night, i heard there were some funny stories and a lot of laughing.. thanks guys! mom's glad dad had company and some laughs!! she's so worried about everyone else.. just like usual.
we explained all of mom's projects to sheila this morning.. now sheila thinks she's got martha stewart in here.. you know.. the christmas cookies, building supervision, slipcovering, quilting, the advice.. she kept rattling things off and sheila was cracking up.. mom said.. "I don't know how they're doing it at home without me" I know we're all wondering the same.. so hurry up and get better all ready!! right? that's what I want to say, but I don't want it to seem like i'm yelling.. :)
we watched Moulin Rouge last night.. my first time seeing it.. it was sad. could have done without that.. i cried for like a half hour.. mom just loves the music.
it's a beautiful day here, we can't believe it's been so nice.. she's happy for anyone who is going to Boukville.. sorry for aunt sue that she can't go this year.. mom's looking forward to going next year with her..
dad will update later.. make it a good day, people!!
love.
oh.. some of you have been having trouble posting comments.. I think you need to create a google account to post comments? I can look into changing it, but I've been keeping it to registered users only because i don't want random postings.. email me if you have problems.. i can always copy and paste a coment for you!
k, bye for real.
Mom is doing fantastic.. she had a little scare last night, where she thought her heart was beating harder, so the nurse did an ekg, but everything was totally fine.. she then took a different pain med and a little bit stronger of a dose and she slept from 12:30-8 am without any interruption!! That's amazing. And, her back pain was gone. Sheila and I wish we could have convinced her of this weeks ago!! Anyways. She is resting well and feels fine. She's excited for dad to come.. they're going to work on her thank you notes, she said.. I have a feeling on Monday, i'll be writing the same thing... haha. I addressed all the envelopes for her yesterday, the stamps are ready to go.. now she just has to fill out the middle... baby steps, she says.
Dad bought a new mattress for the downstairs den at home, we're turning it into a bedroom for mom for when she comes home.. so we'll tackle that project this weekend.. it should only take us an hour to clean out the room and set up a bed frame.. shes been worrying about that room since we arrived here... hopefully this will put her mind at ease!
Dad had a great visit with Matt, Amanda, Paul and sanchnloo last night, i heard there were some funny stories and a lot of laughing.. thanks guys! mom's glad dad had company and some laughs!! she's so worried about everyone else.. just like usual.
we explained all of mom's projects to sheila this morning.. now sheila thinks she's got martha stewart in here.. you know.. the christmas cookies, building supervision, slipcovering, quilting, the advice.. she kept rattling things off and sheila was cracking up.. mom said.. "I don't know how they're doing it at home without me" I know we're all wondering the same.. so hurry up and get better all ready!! right? that's what I want to say, but I don't want it to seem like i'm yelling.. :)
we watched Moulin Rouge last night.. my first time seeing it.. it was sad. could have done without that.. i cried for like a half hour.. mom just loves the music.
it's a beautiful day here, we can't believe it's been so nice.. she's happy for anyone who is going to Boukville.. sorry for aunt sue that she can't go this year.. mom's looking forward to going next year with her..
dad will update later.. make it a good day, people!!
love.
oh.. some of you have been having trouble posting comments.. I think you need to create a google account to post comments? I can look into changing it, but I've been keeping it to registered users only because i don't want random postings.. email me if you have problems.. i can always copy and paste a coment for you!
k, bye for real.
Thursday, August 19, 2010
Revised schedule
Hi everyone.. many of you have asked for some clarification on mom's schedule. Unfortunately nothing can be set in stone with ALL.. everyone responds differently, so anytime I do post about this type of thing I am very hesitant.. things can and do change often.
When we came out to Buffalo at the end of July, we thought mom would be here for course 1 (induction phase, which she's in now), go home and rest for a little while and come back for the 105 day stem cell transplant.
We have since learned that every patient on this protocol also go through course 2 (56 days) and 3 (49 days) before the stem cell transplant. Also, patients still showing greater than 5% blasts in the day 29 bone marrow will go through course 1A, a 14 day extension of the induction phase.
How does this translate? Here is what we know... Mom is on day 23 of 29 for course 1. She will have a bone marrow biopsy on day 29 along with her intrathecal (in the spine) chemotherapy drug which prevents/treats leukemia in the central nervous system. Once Dr. Wetzler receives the results, he will let us know if there are any blasts in her bone marrow. At day 14, she had 1% blasts.. that's a good sign, but not a 100% prediction so we need to keep praying and staying positive.. if her bone marrow looks good and she is eating, sleeping, able to take care of herself, etc.. Dr. Wetzler will make the determination of how long mom can go home for to rest. He also will decide when she needs to come back to start course 2.
Here's where things can get fuzzy... During course 2 (56 days), mom will continue chemotherapy but with some different drugs than course 1. She will spend some time inpatient and some outpatient at the Hope Lodge or Kevin Guest House (both places close to Roswell, both for cancer patients and their families). She will need 24 hour care from a family member while out of the hospital. Course 3 (49 days) will be similar to course 2 in that she will spend some time inpatient and outpatient. We do not know if she can come home at all between course 2, 3 and stem cell transplant.. if there are ever any complications, the courses will be stopped until mom's well enough to continue.. we just don't know what to expect and how she's going to respond..
Looking at all this information, we are hoping that mom will be done with her stem cell transplant in April. She will need close monitoring after that..but we'll worry about that part later!!
Is there any good news in this all? YES!! While all courses of chemotherapy are tough, we have heard that course 1 is the worst because they are trying to kill all the leukemia cells and in the process, kill healthy cells too... mom's acing this course with flying colors!!! She's been tired, but I really do think that has as much to do with the constant traffic in her room as it does the chemotherapy. We know the rest of this process will be challenging, but we are hoping that she can breeze through it just like she has in this first course.
keep praying, keep sending cards, letters, emails and comments... keep reading this blog.. keep the positive energy flowing in our direction! You are all helping us to get through this.. and we appreciate every single one of you.
Friends are like flowers in the garden of life... and since she can't have any flowers right now.. she needs her friends.
(or as loo would say.. friends are like the bacon bits in the salad bowl of life... they make it soda licious.)
will write more later...
love.
When we came out to Buffalo at the end of July, we thought mom would be here for course 1 (induction phase, which she's in now), go home and rest for a little while and come back for the 105 day stem cell transplant.
We have since learned that every patient on this protocol also go through course 2 (56 days) and 3 (49 days) before the stem cell transplant. Also, patients still showing greater than 5% blasts in the day 29 bone marrow will go through course 1A, a 14 day extension of the induction phase.
How does this translate? Here is what we know... Mom is on day 23 of 29 for course 1. She will have a bone marrow biopsy on day 29 along with her intrathecal (in the spine) chemotherapy drug which prevents/treats leukemia in the central nervous system. Once Dr. Wetzler receives the results, he will let us know if there are any blasts in her bone marrow. At day 14, she had 1% blasts.. that's a good sign, but not a 100% prediction so we need to keep praying and staying positive.. if her bone marrow looks good and she is eating, sleeping, able to take care of herself, etc.. Dr. Wetzler will make the determination of how long mom can go home for to rest. He also will decide when she needs to come back to start course 2.
Here's where things can get fuzzy... During course 2 (56 days), mom will continue chemotherapy but with some different drugs than course 1. She will spend some time inpatient and some outpatient at the Hope Lodge or Kevin Guest House (both places close to Roswell, both for cancer patients and their families). She will need 24 hour care from a family member while out of the hospital. Course 3 (49 days) will be similar to course 2 in that she will spend some time inpatient and outpatient. We do not know if she can come home at all between course 2, 3 and stem cell transplant.. if there are ever any complications, the courses will be stopped until mom's well enough to continue.. we just don't know what to expect and how she's going to respond..
Looking at all this information, we are hoping that mom will be done with her stem cell transplant in April. She will need close monitoring after that..but we'll worry about that part later!!
Is there any good news in this all? YES!! While all courses of chemotherapy are tough, we have heard that course 1 is the worst because they are trying to kill all the leukemia cells and in the process, kill healthy cells too... mom's acing this course with flying colors!!! She's been tired, but I really do think that has as much to do with the constant traffic in her room as it does the chemotherapy. We know the rest of this process will be challenging, but we are hoping that she can breeze through it just like she has in this first course.
keep praying, keep sending cards, letters, emails and comments... keep reading this blog.. keep the positive energy flowing in our direction! You are all helping us to get through this.. and we appreciate every single one of you.
Friends are like flowers in the garden of life... and since she can't have any flowers right now.. she needs her friends.
(or as loo would say.. friends are like the bacon bits in the salad bowl of life... they make it soda licious.)
will write more later...
love.
Day 23 Good morning!
I better hurry, by the time I finish it will be afternoon! I don't know where the morning went.
I'm telling you.. it's amazing how well she's doing out here.. she feels really good today.. her numbers are up, her spirits are up.. she wishes her weight was down :) haha.. she weighed herself last night during our walk around and can't believe she hasn't lost any weight.. she thought she'd have lost at least 8 pounds.. she said.. funny mom...
Anyways.. sheila was just in..she thinks mom's a superstar.. she says it every day.. Dr. Wang thinks she's doing perfect.. we can't ask for anything more!! here's a pic of Dr. Wang.. mom likes her a lot! We're waiting for her to come in this morning..
We slept a little better last night.. mom was only up 2x's and she was able to fall right back asleep.
Mom's got a little lower back pain, and Im trying to convince her to take a normal dose of pain meds.. she's currently taking like a quarter of a dose and I think she'd be able to sit and rest more comfortably if her back felt a little better... not that it's so bad.. but it could be better! Sitting up and walking does help, so she's focusing on that! And the flax bag.. her best friend :)
So last night she was soooo full from dinner that she could barely move.. and after we got done skyping w dad, jazzy and mary, turned all the lights off and snuggled in for the night.. I heard..."Lee, i'd go for like a 1/3 of a shrimp eggroll... do you want one?" I said i wasn't really hungry for a shrimp eggroll, but I'd be happy to get her one... she didn't really like that answer so she convinced me that I wanted one, so we settled on spliting one. she's looking forward to a fried, crispy one instead of a frozen, microwaved one (they do give your jaw a workout!!) .. she said this morning that maybe she'll have me go buy like 10 when she gets home.. I said 10, really? yup.. she wants 10. and some fried rice.. she's cracking me up!!
Mom's on the phone with Andrea right now and of all the things she has to be "sick" about, she's so sick that she's going to miss the building of Andrea's house.. she says it all the time.. "I can't believe her house is going to go up without me there... i just can't believe it" Like, the builders won't know what to do without her expertise.. I mean, she's been working and managing Dyle for so long, she can't believe another contractor will possibly be able to get everything right without her supervision!! maybe Andrea can video parts of the process and send it to mom.. or maybe we should skype with the construction site.. that would make mom feel better!!
Ok, we'll update later.. I'm going to get her in the shower and out in the halls!! not before she puts on a new pair of pj's!! they think she is just so fashionable around here!!!
love.
I'm telling you.. it's amazing how well she's doing out here.. she feels really good today.. her numbers are up, her spirits are up.. she wishes her weight was down :) haha.. she weighed herself last night during our walk around and can't believe she hasn't lost any weight.. she thought she'd have lost at least 8 pounds.. she said.. funny mom...
Anyways.. sheila was just in..she thinks mom's a superstar.. she says it every day.. Dr. Wang thinks she's doing perfect.. we can't ask for anything more!! here's a pic of Dr. Wang.. mom likes her a lot! We're waiting for her to come in this morning..
We slept a little better last night.. mom was only up 2x's and she was able to fall right back asleep.
Mom's got a little lower back pain, and Im trying to convince her to take a normal dose of pain meds.. she's currently taking like a quarter of a dose and I think she'd be able to sit and rest more comfortably if her back felt a little better... not that it's so bad.. but it could be better! Sitting up and walking does help, so she's focusing on that! And the flax bag.. her best friend :)
So last night she was soooo full from dinner that she could barely move.. and after we got done skyping w dad, jazzy and mary, turned all the lights off and snuggled in for the night.. I heard..."Lee, i'd go for like a 1/3 of a shrimp eggroll... do you want one?" I said i wasn't really hungry for a shrimp eggroll, but I'd be happy to get her one... she didn't really like that answer so she convinced me that I wanted one, so we settled on spliting one. she's looking forward to a fried, crispy one instead of a frozen, microwaved one (they do give your jaw a workout!!) .. she said this morning that maybe she'll have me go buy like 10 when she gets home.. I said 10, really? yup.. she wants 10. and some fried rice.. she's cracking me up!!
Mom's on the phone with Andrea right now and of all the things she has to be "sick" about, she's so sick that she's going to miss the building of Andrea's house.. she says it all the time.. "I can't believe her house is going to go up without me there... i just can't believe it" Like, the builders won't know what to do without her expertise.. I mean, she's been working and managing Dyle for so long, she can't believe another contractor will possibly be able to get everything right without her supervision!! maybe Andrea can video parts of the process and send it to mom.. or maybe we should skype with the construction site.. that would make mom feel better!!
Ok, we'll update later.. I'm going to get her in the shower and out in the halls!! not before she puts on a new pair of pj's!! they think she is just so fashionable around here!!!
love.
Wednesday, August 18, 2010
chemo treatment... check!
Mom's done with chemo for the day.. yipee! She's feeling fine right now.. just watching tv, relaxing... looking for The Office re-runs.
Mary and Jasmine are having a cook-out with dad tonight, so I'm sure we'll be skyping later.. first we have to take a little walk around the nurses station.
i did make it to the farmers market today.. bought some jams and cookies for the nurses and some dog treats for sanchnloo. The nurses were very happy.. I'm sure the dogs will be too! loo has been starving I heard..
We're going to keep this short and sweet.. time for the walk! Thank you again for all your cards and letters, and no we didn't get to the thank you cards.. mom said tomorrow, definitely!
pray for sleep.
love.
Mary and Jasmine are having a cook-out with dad tonight, so I'm sure we'll be skyping later.. first we have to take a little walk around the nurses station.
i did make it to the farmers market today.. bought some jams and cookies for the nurses and some dog treats for sanchnloo. The nurses were very happy.. I'm sure the dogs will be too! loo has been starving I heard..
We're going to keep this short and sweet.. time for the walk! Thank you again for all your cards and letters, and no we didn't get to the thank you cards.. mom said tomorrow, definitely!
pray for sleep.
love.
Day 22.. woohoo!!
Today oficially kicks off the start of week 4, final week of induction, last big chemo treatment of Course 1. This is a milestone that mom has met head on and roundhouse kicked... she's doing such a great job. Sheila was in this morning and was just so positive about mom's progress.. no fevers, tiny little infections that were caught early and a few minor speedbumps that were not a hinderence to treatment at all.. way to go mom!! With any luck, mom will be ready to come home next Friday. Fingers crossed, everyone!
She'll need to be careful at home, we did learn that she'll probably be able to eat whatever she wants.. probably a week full of shrimp, i'm betting.. whatever it is, she'll have to be very very careful.. like she'll have to wash her lettuce with dish soap.. sounds kind of weird, but I guess after rinsing it very well and masking it with a fresh bottle of dressing, she'll hardly be able to taste the soap.. maybe we should use green apple or grapefruit soap? So I'm sure some of you will want to make food and visit.. just be aware that everything has to be prepared super fresh, well cooked and kept hot hot or cold cold so that she can eat it.. nothing sitting in your car... no weird "everything but the kitchen sink" casseroles.. she's already getting a list of things she wants people to make for her.. your assignments will be handed out shortly! (Fled, what ever you make will be fine, because you eat like this every day.. Matt, keep the dogs off your vegetables.. pee does not equal extra salty goodness..)
As far as visiting goes.. I'm not speaking for mom and dad, but she'll be home to rest.. so talk to dad before visiting.. as far as we've been told, visits will have to be limited and kept very short.. we definitely can't have a Lemfest! We'll have to save that for April or May when there's a great reason to celebrate. We don't know exactly how long mom will be able to be home, Dr. Wetzler makes that decision and we don't get to see him until next week. Maybe a week, maybe only a couple days. She did learn that when she comes back for Course 2, she'll only be in the hospital for a short period of time, then she'll be at the Hope Lodge or Kevin Guest house for the majority of the 54 days. This is when dad and amy will be really taking care of mom.. 24 hours a day.
Moms feeling even better today than yesterday.. she's promised me we're going to walk alot today (sheila said that's one of the things they look at for how long you can be home.. our goal is to just stay in the hall all day!) She'll get her anti-nausea meds around 4 and chemo at 5. She's dreading the next day or two, but dad will be here soon and that instantly makes her feel better. baby steps..
shes' going to try to get her thank you notes out today... she says that every morning.. it has to count for something that she's thinking about writing them everyday!!
The farmer's market starts in 5 minutes.. i'm going on time this week.. we have lots of bribing to do around here, so I better find some good baked goods for the nurses.. and Dr. Wetzler.. I heard he likes cookies!
k, we'll write later... make it a good day!
love.
She'll need to be careful at home, we did learn that she'll probably be able to eat whatever she wants.. probably a week full of shrimp, i'm betting.. whatever it is, she'll have to be very very careful.. like she'll have to wash her lettuce with dish soap.. sounds kind of weird, but I guess after rinsing it very well and masking it with a fresh bottle of dressing, she'll hardly be able to taste the soap.. maybe we should use green apple or grapefruit soap? So I'm sure some of you will want to make food and visit.. just be aware that everything has to be prepared super fresh, well cooked and kept hot hot or cold cold so that she can eat it.. nothing sitting in your car... no weird "everything but the kitchen sink" casseroles.. she's already getting a list of things she wants people to make for her.. your assignments will be handed out shortly! (Fled, what ever you make will be fine, because you eat like this every day.. Matt, keep the dogs off your vegetables.. pee does not equal extra salty goodness..)
As far as visiting goes.. I'm not speaking for mom and dad, but she'll be home to rest.. so talk to dad before visiting.. as far as we've been told, visits will have to be limited and kept very short.. we definitely can't have a Lemfest! We'll have to save that for April or May when there's a great reason to celebrate. We don't know exactly how long mom will be able to be home, Dr. Wetzler makes that decision and we don't get to see him until next week. Maybe a week, maybe only a couple days. She did learn that when she comes back for Course 2, she'll only be in the hospital for a short period of time, then she'll be at the Hope Lodge or Kevin Guest house for the majority of the 54 days. This is when dad and amy will be really taking care of mom.. 24 hours a day.
Moms feeling even better today than yesterday.. she's promised me we're going to walk alot today (sheila said that's one of the things they look at for how long you can be home.. our goal is to just stay in the hall all day!) She'll get her anti-nausea meds around 4 and chemo at 5. She's dreading the next day or two, but dad will be here soon and that instantly makes her feel better. baby steps..
shes' going to try to get her thank you notes out today... she says that every morning.. it has to count for something that she's thinking about writing them everyday!!
The farmer's market starts in 5 minutes.. i'm going on time this week.. we have lots of bribing to do around here, so I better find some good baked goods for the nurses.. and Dr. Wetzler.. I heard he likes cookies!
k, we'll write later... make it a good day!
love.
Tuesday, August 17, 2010
evening update
nothing really to update on.. mom's feeling good right now. That's what really matters.
matt and amanda had a ladybug experience..when I first made the ladybug post matt said ladybugs never visit him.. well one already landed on him at the pool and this one was in their window today! Ha! I told him it would happen...
We met Dr. Wang, she wants to get dressed up before we put her pic on the blog.. she was really nice. Mom asked sheila if she should tell Dr. Wang that she went to China.. sheila said.. um.. well.. you probably don't have to tell her right now. :) poor mom.. she probably wanted to ask a bunch of weird questions!
I made it to Wegmans ok, and back, obviously.. what a fun store! I could probably spend half a day there. Huge international section and beautiful butcher shop.. trust me, it was exciting. I bought mom some meals: shrimp alfredo, shrimp scampi, shrimp egg rolls, shrimp noodle bowl.. she's going to look like bubba gump soon! She ate a shrimp eggroll as soon as I got back and she said it was delicious! whew.. I was so worried it would taste bad and then I'd have a freezer full of shrimp to get rid of!
She's getting ready for her nightly pills and shot.. then we're going to try to rest and get some sleep in between tv shows. We watched Real Housewives of NJ last night.. next week is the finale and we can hardly wait! ugh, it's addicting.
ok, maybe some of you will know what i'm talking about here... just went to the restroom, and when I tried to flush with my foot my flip flop flew off... (i know some of you have worried about this happening.. IT CAN HAPPEN!!!) and it landed, teetering on the seat of the toilet... EEKKK.. i screached and with my ninja like reflexes.. probably resembling an electrocuted water buffalo.. i karate choped the heel of my flip flop, rescuing it from the toilet. whew.. that was close....
k, hope you all sleep well. we are certainly going to try!
love.
matt and amanda had a ladybug experience..when I first made the ladybug post matt said ladybugs never visit him.. well one already landed on him at the pool and this one was in their window today! Ha! I told him it would happen...
We met Dr. Wang, she wants to get dressed up before we put her pic on the blog.. she was really nice. Mom asked sheila if she should tell Dr. Wang that she went to China.. sheila said.. um.. well.. you probably don't have to tell her right now. :) poor mom.. she probably wanted to ask a bunch of weird questions!
I made it to Wegmans ok, and back, obviously.. what a fun store! I could probably spend half a day there. Huge international section and beautiful butcher shop.. trust me, it was exciting. I bought mom some meals: shrimp alfredo, shrimp scampi, shrimp egg rolls, shrimp noodle bowl.. she's going to look like bubba gump soon! She ate a shrimp eggroll as soon as I got back and she said it was delicious! whew.. I was so worried it would taste bad and then I'd have a freezer full of shrimp to get rid of!
She's getting ready for her nightly pills and shot.. then we're going to try to rest and get some sleep in between tv shows. We watched Real Housewives of NJ last night.. next week is the finale and we can hardly wait! ugh, it's addicting.
ok, maybe some of you will know what i'm talking about here... just went to the restroom, and when I tried to flush with my foot my flip flop flew off... (i know some of you have worried about this happening.. IT CAN HAPPEN!!!) and it landed, teetering on the seat of the toilet... EEKKK.. i screached and with my ninja like reflexes.. probably resembling an electrocuted water buffalo.. i karate choped the heel of my flip flop, rescuing it from the toilet. whew.. that was close....
k, hope you all sleep well. we are certainly going to try!
love.
Fashion Show!
Well, mom found like 10 strands of hair on her brush this morning, so we did a run trhough of some of the hats, bandanas and scarves that she's received so far... hopefully we'll get the hang of it before she really needs them. I'm sure amy would have done a better job...
here's the hat annie knitted for her with the necklace the girls night crew made..
a scarf from amy..
Grandma Lem's scarf..
mom thinks she should try this herself...
um.... i don't think so.
babushka style..
a hat from Kelly, Sharon and Gerry
a nightcap from Kelly, Sharon and Gerry.. very soft..
Razor Rick style.. yea girl!
here's where we could have used amy's help...
i don't know... yikes..
a little better!
and yes, she still has all her hair! boy is she glad that's over!
love.
Day 21- Good morning!
Well, the end of week 3. We have one week left of the induction phase (course 1) and hopefully mom will show no signs of disease! Today is already a good day, she slept a little more, she's feeling stronger than she has in a week and she's in great spirits! smiling, laughing.. wondering why they aren't showing more of Jake and Deanna on "The Bachelor: Then & Now".. I don't know how to answer that question.. I don't really know who they are!
She's rifling through her pills and just got her shot.. she hates that shot!! And, she did her chloroform swish.. we are all done with our morning duties!!! Maybe a walk at 10 and she'll be ready for a nap!
I think I'll be off to Walmart or Wegmans at some point today.. now that she knows shrimp has protein in it, she really wants some! I just hope when I bring her back a frozen shrimp dinner she's not disappointed!! and I hope I come back in one piece!! I am terrible with directions... gulp..
today's goals: thank you notes, reading the OD and the USA Today and lots of walking!!
wish me luck! we'll write later!
love.
She's rifling through her pills and just got her shot.. she hates that shot!! And, she did her chloroform swish.. we are all done with our morning duties!!! Maybe a walk at 10 and she'll be ready for a nap!
I think I'll be off to Walmart or Wegmans at some point today.. now that she knows shrimp has protein in it, she really wants some! I just hope when I bring her back a frozen shrimp dinner she's not disappointed!! and I hope I come back in one piece!! I am terrible with directions... gulp..
today's goals: thank you notes, reading the OD and the USA Today and lots of walking!!
wish me luck! we'll write later!
love.
Monday, August 16, 2010
pretty productive day
well.. we didn't nap quite as much as we hoped, but mom did "rest her eyes" a bunch. like right now.. Ina Garten (Barefoot Contessa) just finished making a baked shrimp dish (of course) and now mom's got her eyes closed.. probably dreaming about shrimp..
we reached a few of today's goals.. she's off the heart monitor (did i already say that?) and they're lowering her IV fluid significantly so hopefully she won't be up all night going to the bathroom! they also thought maybe she was getting a little puffy, so lowering the fluid will help get rid of that. we have been walking more.. she promised to do laps around the unit later... like 7 o'clock.. she said. she showered and i did her hair. she always feels better after a shower but dreads taking one.. she doesn't want to be cold! She's been warming up sherry's flax bag for her back and it's helped so much. (thanks aunt sherry!!)
dinner just arrived and mom can't believe she has to eat again. they're making her drink protein shakes because she hasn't been eating as much as the first couple of days. she usually just pushes the shake to the side.. so the dietician came in today and said she'd give mom a different kind.. I see ensure.. don't know how that's going to go over..(pause).. not so bad according to mom. everything tastes satly lately.. the first week or so here everything was bland, then metalic, now it's salty.. her sodium levels are kind of low, so I wonder if that is why everything is salty tasting? anyways.. dinner didn't taste too good, so I heated up a piece of the O'scugnizzo pizza for her and she's eating that just fine! the sausage is a little spicy but at least she's getting some food in her belly. She's got orange slices and some pudding if she wants for dessert... and popsicles anytime. oh yea, and chips, cheetos, fritos and chocolate. :) somehow I don't think she'll be starving out here... too bad fritos weren't high in protein!
Today was Dr. Griffiths' last day with mom.. here she is.. mom really likes her. mom's amazed at how smart and talented she is at such a young age..
Dr. Wang starts tomorrow and then Dr. Wetzler is next week (mom's main doctor and the cheif of the leukemia section). We are excited about meeting another doctor, but feel very safe and comfortable with Dr. Griffiths.
Thank you annie for the knitted hat and socks, they're beautiful! and to everyone else who has been sending cards, letters and emails... thank you for your continued support. we are so thankful to have you all. mom's brother Tim called today to talk, it was nice to hear from both him and Diana.
Dad is going out to dinner with Mike and Andrea Buckley tomorrow night.. mom's happy that he'll eat at least once this week! though, i did hear he was making his specialty tonight... hambuger helper! don't eat it all dad, you'll get a belly ache.
thanks for the new pj's paul! xoxo
k, that's all for now!
love.
we reached a few of today's goals.. she's off the heart monitor (did i already say that?) and they're lowering her IV fluid significantly so hopefully she won't be up all night going to the bathroom! they also thought maybe she was getting a little puffy, so lowering the fluid will help get rid of that. we have been walking more.. she promised to do laps around the unit later... like 7 o'clock.. she said. she showered and i did her hair. she always feels better after a shower but dreads taking one.. she doesn't want to be cold! She's been warming up sherry's flax bag for her back and it's helped so much. (thanks aunt sherry!!)
dinner just arrived and mom can't believe she has to eat again. they're making her drink protein shakes because she hasn't been eating as much as the first couple of days. she usually just pushes the shake to the side.. so the dietician came in today and said she'd give mom a different kind.. I see ensure.. don't know how that's going to go over..(pause).. not so bad according to mom. everything tastes satly lately.. the first week or so here everything was bland, then metalic, now it's salty.. her sodium levels are kind of low, so I wonder if that is why everything is salty tasting? anyways.. dinner didn't taste too good, so I heated up a piece of the O'scugnizzo pizza for her and she's eating that just fine! the sausage is a little spicy but at least she's getting some food in her belly. She's got orange slices and some pudding if she wants for dessert... and popsicles anytime. oh yea, and chips, cheetos, fritos and chocolate. :) somehow I don't think she'll be starving out here... too bad fritos weren't high in protein!
Today was Dr. Griffiths' last day with mom.. here she is.. mom really likes her. mom's amazed at how smart and talented she is at such a young age..
Dr. Wang starts tomorrow and then Dr. Wetzler is next week (mom's main doctor and the cheif of the leukemia section). We are excited about meeting another doctor, but feel very safe and comfortable with Dr. Griffiths.
Thank you annie for the knitted hat and socks, they're beautiful! and to everyone else who has been sending cards, letters and emails... thank you for your continued support. we are so thankful to have you all. mom's brother Tim called today to talk, it was nice to hear from both him and Diana.
Dad is going out to dinner with Mike and Andrea Buckley tomorrow night.. mom's happy that he'll eat at least once this week! though, i did hear he was making his specialty tonight... hambuger helper! don't eat it all dad, you'll get a belly ache.
k, that's all for now!
love.
day 20
morning.. though we feel like it's never been night.. there was NO sleep in room 5419 last night.. poor mom!! she'll nap well today.
right now she's enjoying breakfast.. fruit, oatmeal, a danish.. sips of coffee..
she looks even better today than last night.. we're heading in the right direction.. only one chemo wednesday left! she'll also get the intrathecal (spinal) on day 28 or 29 (next week) which, other than having to lay flat for 1 hour, has no major side effects. she'll start feeling better immediately! We are glad this week will be the last really rough week.
we're going to focus this week on getting mom out of this orthostatic state and not get tachycardic anymore.. that means she gets an elevated heart rate... hers only happens when sitting or standing. A normal, healthy person has a resting heart rate between 60-100 with some super athletes being in the 20's. anyone over 100 is considered to have tachycardia. (i hope i'm saying this all right.. this is a result of my 3 am research!) It's really relative to mom's normal resting heart rate, so now it's a bit elevated. she doesn't feel it while she's lying or sitting, but she does when she's standing. They've got her hooked up to a heart monitor so they're keeping a close watch. Our goal is to get her up walking without fainting!
Mom wanted everyone to know she's doing pretty well with her shots.. she's getting them in her belly (finally) and she said they're not bad at all. as long as the alcohol wipe dries first!!
Paul bought me an egg crate for out here, but when I brought it in, mom asked if she could try it! The mattress isn't very comfortable and her back has been hurting a little.. so now it's not perfect, but she did say the egg crate helped! Maybe we'll try to find the super deluxe model!!
We heard last night that Target and Walmart are within 10 minutes from here, along with the Galaria mall.. I might be doing a frozen shrimp dinner run later if Sheila ok's it!! We just saw coconut shrimp from outback.. i do think there are extra shrimp commercials on out here... no lie. we might also need some fudgesicles!
There was a young mother (maybe 28ish?) with two small girls when we arrived 22 days ago, mom just felt so sad for her to be going through this away from her children all the time... well we heard she's going home! She's finishing course 1 and will hopefully get to rest at home with her family for a while.
The other patients have noticed that mom has visitors all the time and have said she's so very lucky.. and mom agrees.. she feels blessed that everyone is so willing to help however they can. I said we wouldn't have it any other way!!
Dyle just called to check in on mom... he's so worried and wanted to hear her voice.. isn't life strange, not too long ago, mom was the one calling Dyle to make sure he was ok.. I'm sure Dyle misses mom terribly, they've spent the last year (at least) with each other several days a week!!
Food network is on.. no more espn or golf (hmmmm.. wonder who that could have been). I brushed up on some knitting skills online last night, so we're going to attempt that this week also.
The sun seems to always shine out here.. it's another beautiful day. (lets hope winter is listening and taking notes) I'm going to get mom over to the window so we can look out this afternoon.
Mom is sad to hear about Nancy Sheppard. Our family sends our love and prayers to Dan and his family during this tough time. We know Nancy is resting peacefully.
we'll go now. make it a good day, everyone.
love.
right now she's enjoying breakfast.. fruit, oatmeal, a danish.. sips of coffee..
she looks even better today than last night.. we're heading in the right direction.. only one chemo wednesday left! she'll also get the intrathecal (spinal) on day 28 or 29 (next week) which, other than having to lay flat for 1 hour, has no major side effects. she'll start feeling better immediately! We are glad this week will be the last really rough week.
we're going to focus this week on getting mom out of this orthostatic state and not get tachycardic anymore.. that means she gets an elevated heart rate... hers only happens when sitting or standing. A normal, healthy person has a resting heart rate between 60-100 with some super athletes being in the 20's. anyone over 100 is considered to have tachycardia. (i hope i'm saying this all right.. this is a result of my 3 am research!) It's really relative to mom's normal resting heart rate, so now it's a bit elevated. she doesn't feel it while she's lying or sitting, but she does when she's standing. They've got her hooked up to a heart monitor so they're keeping a close watch. Our goal is to get her up walking without fainting!
Mom wanted everyone to know she's doing pretty well with her shots.. she's getting them in her belly (finally) and she said they're not bad at all. as long as the alcohol wipe dries first!!
Paul bought me an egg crate for out here, but when I brought it in, mom asked if she could try it! The mattress isn't very comfortable and her back has been hurting a little.. so now it's not perfect, but she did say the egg crate helped! Maybe we'll try to find the super deluxe model!!
We heard last night that Target and Walmart are within 10 minutes from here, along with the Galaria mall.. I might be doing a frozen shrimp dinner run later if Sheila ok's it!! We just saw coconut shrimp from outback.. i do think there are extra shrimp commercials on out here... no lie. we might also need some fudgesicles!
There was a young mother (maybe 28ish?) with two small girls when we arrived 22 days ago, mom just felt so sad for her to be going through this away from her children all the time... well we heard she's going home! She's finishing course 1 and will hopefully get to rest at home with her family for a while.
The other patients have noticed that mom has visitors all the time and have said she's so very lucky.. and mom agrees.. she feels blessed that everyone is so willing to help however they can. I said we wouldn't have it any other way!!
Dyle just called to check in on mom... he's so worried and wanted to hear her voice.. isn't life strange, not too long ago, mom was the one calling Dyle to make sure he was ok.. I'm sure Dyle misses mom terribly, they've spent the last year (at least) with each other several days a week!!
Food network is on.. no more espn or golf (hmmmm.. wonder who that could have been). I brushed up on some knitting skills online last night, so we're going to attempt that this week also.
The sun seems to always shine out here.. it's another beautiful day. (lets hope winter is listening and taking notes) I'm going to get mom over to the window so we can look out this afternoon.
Mom is sad to hear about Nancy Sheppard. Our family sends our love and prayers to Dan and his family during this tough time. We know Nancy is resting peacefully.
we'll go now. make it a good day, everyone.
love.
Sunday, August 15, 2010
Day 19- changing of the guards...
hi everyone! i'm back out in buffalo with mom. Amy rode out with me today to visit and has gone back with dad already... short visit, but i'm sure it was still worth it! mom was happy, anyways! she said it was really great to see her, and amy brought out some beautiful scarves that mom was thankful for... though she hasn't lost any hair yet! we're keeping our fingers crossed.. and toes.
mom looks really good today, way better than friday when I left her.. its hard to leave when she's not feeling that good because i just want to stay to help her... but i'm glad dad is here while she's starting to feel better so he can see her improving a little every day.
dinner just arrived not too long ago, so mom's enjoying turkey, mashed potatoes and stuffing with gravy.. pretty delicious.. though she's not too hungry anymore. they're giving her chocolate protein shakes also... disgusting she says.. so she's just going to eat all the turkey and skip the shake! I did remember the pizza i promised! it's vacuum sealed and in the freezer out here, so anytime she feels like having a peice, i'll heat it up for her.
not a lot to update on, she's hoping to get some rest tonight because last night she didn't get a wink of sleep! we've got the food network back on and we're just going to have an easy rest of the day.
maybe i'll write again tonight if we feel like chatting...
love.
mom looks really good today, way better than friday when I left her.. its hard to leave when she's not feeling that good because i just want to stay to help her... but i'm glad dad is here while she's starting to feel better so he can see her improving a little every day.
dinner just arrived not too long ago, so mom's enjoying turkey, mashed potatoes and stuffing with gravy.. pretty delicious.. though she's not too hungry anymore. they're giving her chocolate protein shakes also... disgusting she says.. so she's just going to eat all the turkey and skip the shake! I did remember the pizza i promised! it's vacuum sealed and in the freezer out here, so anytime she feels like having a peice, i'll heat it up for her.
not a lot to update on, she's hoping to get some rest tonight because last night she didn't get a wink of sleep! we've got the food network back on and we're just going to have an easy rest of the day.
maybe i'll write again tonight if we feel like chatting...
love.
Saturday, August 14, 2010
Day 18 - Evening update.
Well, it has been quite a day. Dr. Griffiths decided to do a couple of things to try to get Rita's blood preasure and heart rate under control. One was to increase her volume so she gave her increased fluids and Rita is in the process of getting a blood transfusion. She seems to be responding OK to this. Secondly, Dr. Griffiths suspected that Rita may have an infection that they haven't been able to detect so, she is giving her some new antibiotics. Hopefully, these actions will get Rita stabilized and back on her feet without passing out. We will know more tomorrow about how this is working. For now, she is resting comfortably.
Going to keep this short so I'll be signing off. Keep those thoughts and prayers coming!!
Love, Dave
Going to keep this short so I'll be signing off. Keep those thoughts and prayers coming!!
Love, Dave
DAY18
Good Morning. Its Dave and I'm here for the weekend. I'll be trying to keep you informed for the next couple of days until Lisa gets back. Rita has finished her morning chores (pills, shot, breakfast and bathroom duties) and is now "resting her eyes". She is definately not napping!! Rita is still having these little episodes where her blood preasure drops when she stands up and she kind of faints. For now, she is confined to bed but we hope to get her up in a chair a little later. I'll be questioning the doctors about the cause for this and report what I find out later. She had an ECHO gram last night and everything looks good with her heart. Her blood results are gradually improving so we hope she will feel better as the day goes by. We guess that these little secondary ailments are just a part of the process - like she needs a little extra challange!! I can tell you that she is not too happy about these things but, like always, faces them head on and refuses to let them get her down. I bet no one is suprised by that!!
I looked at her schedule for the rest of course I and, if all continues to go well, she will get her last dose of chemo this coming Wednesday. After she recovers from that, its one more spinal treatment and a bone marrow the following Wednesday and then, hopefully, she can come home for a little while. We are keeping all of our fingers crossed for that to happen.
Well, thats about all I have to say for now except thank all of you so much for your thoughts, prayers and unbelievable support. I can't tell you how much it means to Rita and I - it really helps!
Love to all, Dave
I looked at her schedule for the rest of course I and, if all continues to go well, she will get her last dose of chemo this coming Wednesday. After she recovers from that, its one more spinal treatment and a bone marrow the following Wednesday and then, hopefully, she can come home for a little while. We are keeping all of our fingers crossed for that to happen.
Well, thats about all I have to say for now except thank all of you so much for your thoughts, prayers and unbelievable support. I can't tell you how much it means to Rita and I - it really helps!
Love to all, Dave
Friday, August 13, 2010
bittersweet..
so i'm leaving shortly (as soon as dad gets here and i update him..). this doesn't make me happy. i mean, i'm happy to go home to see paul and sanchnloo, and to sleep in a bed, and take a real shower, with hot pressurized water.. but i hate leaving mom. i know most of you feel this already. i like being here so i can see and hear first hand what's going on. not that dad won't tell us, but i guess i'm like mom in that i have been asking 1000 questions.. poor sheila. between the mom and i, she must need a xanax after she leaves the room.
moms weekend should be great.. dad will be by her side, with lots of goodies (thanks paul) and no more chemo until wednesday, so everyday her counts/energy will get higher. she's asked me to bring back an oscunizzio pizza, (please don't let me forget..) she talked the dietician into letting her have some if it's been frozen, on ice, then microwaved before she eats it.. she's excited.
k, so i'm signing off.. maybe i'll skype then write.. or i'll just relinquish duties (or dooties like loo says) to dad until sunday night..
k dad just walked in.. bye.
love.
moms weekend should be great.. dad will be by her side, with lots of goodies (thanks paul) and no more chemo until wednesday, so everyday her counts/energy will get higher. she's asked me to bring back an oscunizzio pizza, (please don't let me forget..) she talked the dietician into letting her have some if it's been frozen, on ice, then microwaved before she eats it.. she's excited.
k, so i'm signing off.. maybe i'll skype then write.. or i'll just relinquish duties (or dooties like loo says) to dad until sunday night..
k dad just walked in.. bye.
love.
Day 17- or 13ish left in course 1.. whichever sounds better.
sorry i'm a little late.. matt was trying to convince me to write about which mom likes better, pancakes or waffles.. when i asked she said: buffalo chicken wraps, shrimp with bowties and a steak sub.. i guess she didn't feel like playing that game.. sorry beavis!
ps.. i've given up on capital letters.. my fingers aren't working well and i can't put that much energy into capitalizing a stupid letter.. to all you english teachers, work it out.. in fact.. i might just start spelling phonetically so i don't waste energy on that either! kind of like how lu lu, my dog, would spell. haahaa.
sheila came in and chatted with us for a while this morning.. we're trying to get mom comfortable so we've got a few new plans.. maybe a lidocaine patch for her back, a little more ambien at night (stupid beeping pole) a tiny increase in her anti-anxiety meds and some gas-x. hopefully all of this will take the edge off.. she is trying so hard to be perfect and brave.. i keep telling her just be comfortable!!
she just told me to tell you all that when she gets home she's going to make every single recipe she's been watching on the food network.. everything looks so good..
anyways, back to sheila.. we have known for a while that she's been feeling light headed and dizzy when she gets up, (orthostatic) so she's been instructed to sit first... then stand up slowly.. hold on to things.. and she's been doing that. well yesterday she felt very faint after coming out of the bathroom, and that's when sheila and dr. griffiths thought maybe the clot went into her lung.. this morning, mom was just getting out of the bathroom when sheila came in and mom felt the same way.. light headed and dizzy...we discovered that when mom was sitting in the bathroom, it's a bit hot in there, so she's been putting her head between her knees or resting her head on the garbage can because she thought that would make her less light headed (thank god they sanitize the bathroom everyday).... for like 5 minutes at a time.. then she'd try to stand up and almost pass out.. so she has strict orders to sit upright while in the bathroom because that's definitely what is making her feel dizzy!!! glad we've figured that out. :) she should feel much better now!!
she is feeling better than yesterday.. it wasn't a very good day yesterday and she's glad it's over. Today she looks better, has more color, feels like she has more energy and is in better spirits. she's reading her cards and letters now.. i guess they do come almost everyday.
she's anxiously waiting for dad to come and is thankful i'm here to watch her "like a baby" as she put it.. though i'm really just sitting here making sure she has anything she needs/wants. most of all keeping her company when she wants it.
here comes the lidocaine patch... she is excited!!! oohh it was cold! she wasn't expecting that! she's smiling now.. maybe it's alredy working. :)
so again, she's going to try to shower today.. though she knows it will make her feel better, she's cuddled into her clean, fresh, soft blanket and doesn't want to get up.. she's a sucker for soft blankets.
the neeley's are on.. so we'll at least wait until they're done before she showers. mom LOVES them.. she just thinks they're so cute and funny.. glad they make her happy!
we'll go now and write after the doctor visits. maybe she's got some great news!
love. ps.. she picked pancakes.
ps.. i've given up on capital letters.. my fingers aren't working well and i can't put that much energy into capitalizing a stupid letter.. to all you english teachers, work it out.. in fact.. i might just start spelling phonetically so i don't waste energy on that either! kind of like how lu lu, my dog, would spell. haahaa.
sheila came in and chatted with us for a while this morning.. we're trying to get mom comfortable so we've got a few new plans.. maybe a lidocaine patch for her back, a little more ambien at night (stupid beeping pole) a tiny increase in her anti-anxiety meds and some gas-x. hopefully all of this will take the edge off.. she is trying so hard to be perfect and brave.. i keep telling her just be comfortable!!
she just told me to tell you all that when she gets home she's going to make every single recipe she's been watching on the food network.. everything looks so good..
anyways, back to sheila.. we have known for a while that she's been feeling light headed and dizzy when she gets up, (orthostatic) so she's been instructed to sit first... then stand up slowly.. hold on to things.. and she's been doing that. well yesterday she felt very faint after coming out of the bathroom, and that's when sheila and dr. griffiths thought maybe the clot went into her lung.. this morning, mom was just getting out of the bathroom when sheila came in and mom felt the same way.. light headed and dizzy...we discovered that when mom was sitting in the bathroom, it's a bit hot in there, so she's been putting her head between her knees or resting her head on the garbage can because she thought that would make her less light headed (thank god they sanitize the bathroom everyday).... for like 5 minutes at a time.. then she'd try to stand up and almost pass out.. so she has strict orders to sit upright while in the bathroom because that's definitely what is making her feel dizzy!!! glad we've figured that out. :) she should feel much better now!!
she is feeling better than yesterday.. it wasn't a very good day yesterday and she's glad it's over. Today she looks better, has more color, feels like she has more energy and is in better spirits. she's reading her cards and letters now.. i guess they do come almost everyday.
she's anxiously waiting for dad to come and is thankful i'm here to watch her "like a baby" as she put it.. though i'm really just sitting here making sure she has anything she needs/wants. most of all keeping her company when she wants it.
here comes the lidocaine patch... she is excited!!! oohh it was cold! she wasn't expecting that! she's smiling now.. maybe it's alredy working. :)
so again, she's going to try to shower today.. though she knows it will make her feel better, she's cuddled into her clean, fresh, soft blanket and doesn't want to get up.. she's a sucker for soft blankets.
the neeley's are on.. so we'll at least wait until they're done before she showers. mom LOVES them.. she just thinks they're so cute and funny.. glad they make her happy!
we'll go now and write after the doctor visits. maybe she's got some great news!
love. ps.. she picked pancakes.
Thursday, August 12, 2010
a little update
So we have just one update... mom has had a little cramping in her right leg for a day or two, so Sheila mentioned it to Dr. Griffiths. She had to go for an ultrasound and they found a small blood clot. Mom was also feeling a little dizzy and light headed, so they did a CT scan on her chest. They found a small bloot clot in her lung (maybe a broken off peice from the one in her leg, or maybe the small clot traveled.. ) Although this sounds scary, Sheila and Dr. Griffiths have assured us that its normal for patients who are in their beds a lot and cancer increases a persons risk of having these. Mom will be on an anti-coagulation medication 2x's daily for 6 mos. The clots will eventually dissolve on their own and the medication will prevent more clots from forming. Although this certainly isn't a "blessing", we have become aware of something that could have been worse, so we are thankful for that. This will not at all change the course mom is set on.. just one more small inconvenience (like her pills..) per day that will get her to being healthy again. This is just a small mental set back.. nothing more..
On a brighter note, mom took a long nap and is feeling rested. We have cleaned up her room a bit and I'm in the process of doing laundry.. her favorite blanket will smell good again!! It's amazing how much "stuff" one can accumulate in 16 days... we brought things out here that she didn't think she could live without, and most of it is packed back in the suitcase because she can't imagine needing it.. funny..
We didn't get to paint a scarf due to the tests she had to do today, but Barbara will be back on Wednesday to paint one with her.. something to look forward to.
Hopefully we'll have some good news tomorrow.. say an extra prayer, k?
maybe we'll chat later, right now we're tuning in to the rest of The Fabulous Beekman Boys.. that should keep us entertained for a few hours!
love.
On a brighter note, mom took a long nap and is feeling rested. We have cleaned up her room a bit and I'm in the process of doing laundry.. her favorite blanket will smell good again!! It's amazing how much "stuff" one can accumulate in 16 days... we brought things out here that she didn't think she could live without, and most of it is packed back in the suitcase because she can't imagine needing it.. funny..
We didn't get to paint a scarf due to the tests she had to do today, but Barbara will be back on Wednesday to paint one with her.. something to look forward to.
Hopefully we'll have some good news tomorrow.. say an extra prayer, k?
maybe we'll chat later, right now we're tuning in to the rest of The Fabulous Beekman Boys.. that should keep us entertained for a few hours!
love.
Day 16- Morning!
Half way done with course 1.. that feels good to say. Sheila just left.. mom's still doing great... numbers continue to drop (normal) and she has no fevers, infections or other problems, so we're right on track!
We asked about what minimal residual disease meant and we were a little wrong on the meaning.. if after day 15 a person has more than 5% blasts, like 6% or something.. then that is called minimal residual disease... mom has 1% so that's considered BETTER than minimal residual disease! woo hoo!
We found out that Little David isn't a match, so next week they will be sending out a kit to Aunt Sue. Thank you for helping mom.. words can't even explain how appreciative we are that you are all so willing to help cure her.
Mom skyped with Dad, Amy, Mary and Jazz last night.. she was happy to see everyone and to hear that dad is doing a great job around the house!
Chemo went really well.. no nausea and mom's feeling great today. She's decided she's not going to eat as much today because last night she was so full she couldn't get comfortable.... she only had 1 breakfast entree today instead of 3!
She is now taking her pills 2 at a time.. big accomplishment.. still in the yogurt.. and she just has to take her chloroform, as she calls it. it's just a mouth rinse that prevents mouth sores.. really called chlorhexidine. I just think it's funny that she calls it that and the nurses know exactly what she's talking about.. and no one corrects her.
No big plans for the day.. I'm going to do laundry, mom's going to shower so I'll be doing her hair.. I'm always nervous because I don't want to pull her hair out and I'm afraid that I'm going to burn her forehead with the curling iron when I curl her bangs.. they're soo short!! (I'm VERY careful, dad) We'll probably read magazines (though we say that every day and get sucked into watching tv) and watch the rest of The Fabulous Beekman Boys on itunes. I got mom a little hooked on that show too.. you should check it out, it's very funny.. planet green channel. Way better than The Kardashians.. it doesn't turn your brain to mush as fast..
Thank you for the cards, letters, emails and comments. It's so nice to see the smile on her face when she gets her little stack of mail every couple of days! She's going to spend some time responding to everyone today!!
At some point this morning Barbara, from the Artist in Residency program, is going to come in and teach mom how to paint a silk scarf. She's pretty excited about that! When Barbara introduced herself yesterday, mom was just getting ready for chemo, so they just chatted and mom asked to do a project today instead. We found out that Barbara spent some time in China... they talked for at least 30 minutes yesterday all about their trips! Barbara also does needlwork and knitting, so we'll be learning some new skills!
This really is a great place.. they do their best to make the patients feel comfortable and occupied while going through probably the toughest times in their lives. We also have men and women from pastoral services who come in and say prayers with us and give mom holy communion. It brings her comfort.
Baby steps.. that's our motto.. maybe we'll watch What About Bob? later to give us some inspiration.. and some good laughs!
guess that's all for now..
love.
We asked about what minimal residual disease meant and we were a little wrong on the meaning.. if after day 15 a person has more than 5% blasts, like 6% or something.. then that is called minimal residual disease... mom has 1% so that's considered BETTER than minimal residual disease! woo hoo!
We found out that Little David isn't a match, so next week they will be sending out a kit to Aunt Sue. Thank you for helping mom.. words can't even explain how appreciative we are that you are all so willing to help cure her.
Mom skyped with Dad, Amy, Mary and Jazz last night.. she was happy to see everyone and to hear that dad is doing a great job around the house!
Chemo went really well.. no nausea and mom's feeling great today. She's decided she's not going to eat as much today because last night she was so full she couldn't get comfortable.... she only had 1 breakfast entree today instead of 3!
She is now taking her pills 2 at a time.. big accomplishment.. still in the yogurt.. and she just has to take her chloroform, as she calls it. it's just a mouth rinse that prevents mouth sores.. really called chlorhexidine. I just think it's funny that she calls it that and the nurses know exactly what she's talking about.. and no one corrects her.
No big plans for the day.. I'm going to do laundry, mom's going to shower so I'll be doing her hair.. I'm always nervous because I don't want to pull her hair out and I'm afraid that I'm going to burn her forehead with the curling iron when I curl her bangs.. they're soo short!! (I'm VERY careful, dad) We'll probably read magazines (though we say that every day and get sucked into watching tv) and watch the rest of The Fabulous Beekman Boys on itunes. I got mom a little hooked on that show too.. you should check it out, it's very funny.. planet green channel. Way better than The Kardashians.. it doesn't turn your brain to mush as fast..
Thank you for the cards, letters, emails and comments. It's so nice to see the smile on her face when she gets her little stack of mail every couple of days! She's going to spend some time responding to everyone today!!
At some point this morning Barbara, from the Artist in Residency program, is going to come in and teach mom how to paint a silk scarf. She's pretty excited about that! When Barbara introduced herself yesterday, mom was just getting ready for chemo, so they just chatted and mom asked to do a project today instead. We found out that Barbara spent some time in China... they talked for at least 30 minutes yesterday all about their trips! Barbara also does needlwork and knitting, so we'll be learning some new skills!
This really is a great place.. they do their best to make the patients feel comfortable and occupied while going through probably the toughest times in their lives. We also have men and women from pastoral services who come in and say prayers with us and give mom holy communion. It brings her comfort.
Baby steps.. that's our motto.. maybe we'll watch What About Bob? later to give us some inspiration.. and some good laughs!
guess that's all for now..
love.
Wednesday, August 11, 2010
great news!
We knew it was going to be a good day! Sheila just came in and told us that some of the results from the bone marrow biopsy are in... mom has 1% blasts!! Less than 5% is normal, so mom's doing amazing!! She started at 87% and 15 days later she's at 1%. We are so proud of her. She also has minimal residual disease.. we're not so sure what that means.. but it sounds good too!
Chemo in 1 hour, and i'm sure Dr. Griffiths will get into more details during tomorrow's rounds as far as the numbers go..
keep sending the love and prayers.. it's working!!!
will write tonight.
love.
Chemo in 1 hour, and i'm sure Dr. Griffiths will get into more details during tomorrow's rounds as far as the numbers go..
keep sending the love and prayers.. it's working!!!
will write tonight.
love.
Day 15- Today's going to be a good day...
Even though mom get's chemo today, we're making it a good day. Sometimes it helps instead of thinking ... I hope today is a good day... to think... I'm making today a good day. The power of positive thinking is greater than we know. Chemo isn't until 5, and she gets anti-nausea meds before hand, so it should be rather uneventful. The chemo is a bittersweet thing.. I know it's helping to cure mom, even though it's killing everything in it's path.. it still hasn't taken her hair!!! (FREEDOM!!!)
We've already eaten a delicious breakfast.. I know I keep saying it.. but I've never seen mom eat so much in my life.. she's had coffee, hot cocoa, mandarin oranges, oatmeal with brown sugar, scrambled eggs with cheese, bacon, an english muffin and the yogurt she uses to wash down her pills! I mean.. isn't that alot?! She's going to pass on the stewed prunes this morning... thank god.. um.. I was wrong.. she's having them too. She hasn't lost any weight yet, not even 1 pound!!
Sheila is in here.. she's so great. She's answered mom's 1000 questions already, including.. what about snowstorms.. mom's so worried about the winter out here. She's also wondering what the Hope House looks like, if she has to share a bathroom (really worried about that one) and how sanitary it is over there. One of these days i'm going to have to go to take pictures and ease her mind!!
Here's Sheila.. mom just loves her!
There is a farmers market set up right out our window, it's from 11-2, so I'm going to run down and check that out later.. I don't know what mom will be able to have, but I'll get the nurses some cookies for taking such good care of us out here. And, I heard they have a homemade dog treat stand, so I know sanchnloo will be soda excited! Mom really wants some corn on the cob.. she's trying to convince the nurse, the doctor and the dietician that we should be able to either bring fresh corn and have them cook it in the cafeteria or have someone cook it at home, cut it from the cob, freeze it and then microwave it out here.. with a couple slices of Oscugnizzo's pizza.. oh and some Golden Corral tempura shrimp. There must be one out here because the commercial is on about every 10 minutes.. and she thinks it looks sooooo good! She told everyone on skype last night that the first place she wants to go is to OK Corral.. but she meant Golden Corral..
We've been keeping up with all the food network shows.. the New Jersey Housewives and of course.. the Kardashians.. mom loves that crap. I think it makes her feel normal and thankful!
We haven't read very many magazines because it's hard to read when you're "resting your eyes" as much as mom likes to.. I'm going to get her to go through some of them so I can take them back home.. we do have way too much stuff out here! She's trying to get recipes together for when she gets home..
QVC or HSN has a sewing machine on today's special value.. and it's making her nuts to not order it! she keeps changing the channel to see if they're almost sold out.. I'm actually surprised she hasn't ordered anything yet.. I mean she has only a few things to do out here.. eat.. sleep.. read/watch tv and get on the computer.. seems like dad should have boxes being delivered everyday!! Closer to Christmas I bet that will be the case! ;)
oh great.. now a long john silver's commercial... someone get this woman a peice of shrimp!!! hahah.
Well, we're going to get working on some thank you notes and snuggle in for our morning nap before lunch comes.. I do feel like a hobbit.
We'll chat again after the farmers market!
love.
We've already eaten a delicious breakfast.. I know I keep saying it.. but I've never seen mom eat so much in my life.. she's had coffee, hot cocoa, mandarin oranges, oatmeal with brown sugar, scrambled eggs with cheese, bacon, an english muffin and the yogurt she uses to wash down her pills! I mean.. isn't that alot?! She's going to pass on the stewed prunes this morning... thank god.. um.. I was wrong.. she's having them too. She hasn't lost any weight yet, not even 1 pound!!
Sheila is in here.. she's so great. She's answered mom's 1000 questions already, including.. what about snowstorms.. mom's so worried about the winter out here. She's also wondering what the Hope House looks like, if she has to share a bathroom (really worried about that one) and how sanitary it is over there. One of these days i'm going to have to go to take pictures and ease her mind!!
There is a farmers market set up right out our window, it's from 11-2, so I'm going to run down and check that out later.. I don't know what mom will be able to have, but I'll get the nurses some cookies for taking such good care of us out here. And, I heard they have a homemade dog treat stand, so I know sanchnloo will be soda excited! Mom really wants some corn on the cob.. she's trying to convince the nurse, the doctor and the dietician that we should be able to either bring fresh corn and have them cook it in the cafeteria or have someone cook it at home, cut it from the cob, freeze it and then microwave it out here.. with a couple slices of Oscugnizzo's pizza.. oh and some Golden Corral tempura shrimp. There must be one out here because the commercial is on about every 10 minutes.. and she thinks it looks sooooo good! She told everyone on skype last night that the first place she wants to go is to OK Corral.. but she meant Golden Corral..
We've been keeping up with all the food network shows.. the New Jersey Housewives and of course.. the Kardashians.. mom loves that crap. I think it makes her feel normal and thankful!
We haven't read very many magazines because it's hard to read when you're "resting your eyes" as much as mom likes to.. I'm going to get her to go through some of them so I can take them back home.. we do have way too much stuff out here! She's trying to get recipes together for when she gets home..
QVC or HSN has a sewing machine on today's special value.. and it's making her nuts to not order it! she keeps changing the channel to see if they're almost sold out.. I'm actually surprised she hasn't ordered anything yet.. I mean she has only a few things to do out here.. eat.. sleep.. read/watch tv and get on the computer.. seems like dad should have boxes being delivered everyday!! Closer to Christmas I bet that will be the case! ;)
oh great.. now a long john silver's commercial... someone get this woman a peice of shrimp!!! hahah.
Well, we're going to get working on some thank you notes and snuggle in for our morning nap before lunch comes.. I do feel like a hobbit.
We'll chat again after the farmers market!
love.
Tuesday, August 10, 2010
goodnight
We had a pretty uneventful afternoon... mom ate dinner really well.. even though she finished lunch less than 2 hours earlier.. she didn't want to waste any food!
Dad learned how to Skype (thanks to paul for the webcam) and mom got to chat with Dad, Matt, Amanda, Paul and Sanchnloo. It was good to watch them.. I know they miss each other terribly. At least we have the capability to see and talk with our loved ones when ever we want... I can't imagine having to go through this even 15 years ago..
We're halfway through course 1 and that keeps us positive! Mom got the official news from the doctor that she doesn't have the Philadelphia chromosome (written on paper.. she kept asking if it was written on paper).. that's great news.. and still no leukemia in her central nervous system. Like dad keeps saying, we got the only bad news were going to get already and the rest is going to be baby steps to the finish line.. we'll get there!!
We're going to say good night now.. we'll talk in the morning.
love.
Dad learned how to Skype (thanks to paul for the webcam) and mom got to chat with Dad, Matt, Amanda, Paul and Sanchnloo. It was good to watch them.. I know they miss each other terribly. At least we have the capability to see and talk with our loved ones when ever we want... I can't imagine having to go through this even 15 years ago..
We're halfway through course 1 and that keeps us positive! Mom got the official news from the doctor that she doesn't have the Philadelphia chromosome (written on paper.. she kept asking if it was written on paper).. that's great news.. and still no leukemia in her central nervous system. Like dad keeps saying, we got the only bad news were going to get already and the rest is going to be baby steps to the finish line.. we'll get there!!
We're going to say good night now.. we'll talk in the morning.
love.
Bone marrow biopsy.. check!
Mom's done with the bone marrow biopsy. It only took 9 minutes from the time the Dr. cleaned the area to the bandaid at the end. It was fast!! It's not the nicest of procedures to watch.. but mom did a great job and asked funny questions throughout.. like.. how come I don't hear any power tools or hammers.. what is my bone soft? no hand drills? Then she told the doctor this was a big research controversy.. she was making them smile for sure! She didn't feel a thing and the Doctor said she's doing excellent!
Now she's eating and watching Guy's Big Bite. She said the food tastes so good.. right now it's beef stew over buttered egg noodles... (Sorry Gerry) and some of her favorite.. the mashed potatoes with gravy and cream of mushroom soup. She's also decided that her first meal out of the hospital will probably be shrimp scampi!
She had a shower and a hair-do.. if that's what you can call it when I do her hair! She always feels better after a nice hot shower.. don't we all!!
Thank you for the movie sugestions.. it seems some of you have little faith in my movie picking abilities! :) I thought maybe the "Land Before Time" sounded good.. I wish mom liked Harry Potter!
did everyone hear that Jimmy Johnson (football) is going to be on Survivor this year? and it is moved to wednesdays.... we thought that was some pretty fun news..
k .. that's all for now.. going to rest and watch food tv... it's sad when you've been watching so much of one channel that you're seeing re-runs within 12 hours... oh well! will chat later.
love.
Now she's eating and watching Guy's Big Bite. She said the food tastes so good.. right now it's beef stew over buttered egg noodles... (Sorry Gerry) and some of her favorite.. the mashed potatoes with gravy and cream of mushroom soup. She's also decided that her first meal out of the hospital will probably be shrimp scampi!
She had a shower and a hair-do.. if that's what you can call it when I do her hair! She always feels better after a nice hot shower.. don't we all!!
Thank you for the movie sugestions.. it seems some of you have little faith in my movie picking abilities! :) I thought maybe the "Land Before Time" sounded good.. I wish mom liked Harry Potter!
did everyone hear that Jimmy Johnson (football) is going to be on Survivor this year? and it is moved to wednesdays.... we thought that was some pretty fun news..
k .. that's all for now.. going to rest and watch food tv... it's sad when you've been watching so much of one channel that you're seeing re-runs within 12 hours... oh well! will chat later.
love.
Day 14... about halfway done with course 1!
Good morning! Sorry we didn't get to write yesterday afternoon or evening.. we got busy watching tv and chatting. There wasn't much news anyways!!
Our day started early.. I think around 12:30am.. a nurse came in and woke mom up to tell her she couldn't have anymore water for the night.. thank god she did that.. I mean, for someone who only drinks 2 inches at a time.. and maybe a whole cup during an entire day, it was worth waking her up out of her ambien induced sleep to make sure she didn't happen to take a tiny sip of something! (I know she was just doing her job.) We both were able to go back to sleep.. so not too big of a deal..
She has a bone marrow biopsy at 1:30.. I guess the process of concious sedation starts around 10am, so they've said she can't eat or drink until it's over. She's not too excited about that part.. she's starving! And she's worried they aren't going to give her lunch either! Haha.. now she's begining to sound like Loo loo. She's been eating so well here.. like 5 and 6 things for each meal. Lot's of variety too. Our nurse Jenna just came in and said she'd sneak her something for breakfast so that made mom happy!
She's looking good.. still has ALL of her hair. The nurses said it usually starts to fall out around day 14 so she kind of thought she'd wake up this morning and be bald.. not at all! hardly a strand out of place. I'm still hoping she'll prove everyone wrong and walk out of here with a full head of beautiful golden hair!!
She's on to taking her pills.. like 15 at each sitting.. that's a meal in itself! Plus her miralax.. yuck. She takes her pills pretty quickly now, with yogurt.. so even though is a daunting task.. she's mastered it already.
ok, well our breakfast trays just arrived.. she's already dug into her bacon.. so much for a light breakfast!!
I'll update after the bone marrow biopsy.. let everyone know how well she did! :)
love.
Our day started early.. I think around 12:30am.. a nurse came in and woke mom up to tell her she couldn't have anymore water for the night.. thank god she did that.. I mean, for someone who only drinks 2 inches at a time.. and maybe a whole cup during an entire day, it was worth waking her up out of her ambien induced sleep to make sure she didn't happen to take a tiny sip of something! (I know she was just doing her job.) We both were able to go back to sleep.. so not too big of a deal..
She has a bone marrow biopsy at 1:30.. I guess the process of concious sedation starts around 10am, so they've said she can't eat or drink until it's over. She's not too excited about that part.. she's starving! And she's worried they aren't going to give her lunch either! Haha.. now she's begining to sound like Loo loo. She's been eating so well here.. like 5 and 6 things for each meal. Lot's of variety too. Our nurse Jenna just came in and said she'd sneak her something for breakfast so that made mom happy!
She's looking good.. still has ALL of her hair. The nurses said it usually starts to fall out around day 14 so she kind of thought she'd wake up this morning and be bald.. not at all! hardly a strand out of place. I'm still hoping she'll prove everyone wrong and walk out of here with a full head of beautiful golden hair!!
She's on to taking her pills.. like 15 at each sitting.. that's a meal in itself! Plus her miralax.. yuck. She takes her pills pretty quickly now, with yogurt.. so even though is a daunting task.. she's mastered it already.
ok, well our breakfast trays just arrived.. she's already dug into her bacon.. so much for a light breakfast!!
I'll update after the bone marrow biopsy.. let everyone know how well she did! :)
love.
Monday, August 9, 2010
Day 13
Good morning everyone! We're doing really well today... better than yesterday. No more aches and she's getting rid of a couple pills and getting the drugs through IV instead! She's very excited about that because pills are her nemesis.
She's eating like a champ.. in fact she had me go to matt's to pick a few homegrown cukes yesterday and I smuggled them in here.. with a vegetable peeler.. thank god I didn't have to go through a metal detector!! We asked Sheila, her head nurse, (I'll try to get a picture of her so you can meet her) if she could eat the cukes and because her numbers are still up high enough she can! I do have to wash them with soap and water, really really well.. and peel them away from her, then I can rinse them and give them to her.. they will be the cleanest cukes anyone's ever seen! She's so excited... hopefully they still taste like cucumbers! Everything tastes like metal.. I already told you, but I feel so horrible because she's trying hard to eat and drink, but it sucks that nothing tastes good. Not even coffee... I would be so sad without a great cup of coffee in the morning. She doesn't even like the taste of gingerale right now.. at least the Frito's still taste good.
We watched a movie last night.. Being Julia.. has anyone ever seen it? Probably not...it should be banned from being watched. It was horrible and she told me she loved it and it was such an awesome movie.. then at the end said... well maybe I saw it a long time ago and only once, so I really didn't remember it. Let me tell you.. it was on par with something Mariah Carey would make.. maybe worse.. unbelievable, right?! From now on I pick the movies!!!
We are glad to hear everyone's ladybug stories.. keep your eyes peeled! We had a couple little ladybugs swimming with us at girls night!! They just love mom's pool area! Don't we all...
We're doing some stretching now with the Occupational Therapist, hopefully mom's back will feel better, it's just a little tight because of lying in bed all this time.
We just had some mail brought into us, so keep those letters coming! She's looking forward to reading all your inspirational thoughts and wishes. She loves everyone and says thank you again.
Here's a pic of Jazzy and Meema from their visit this weekend.
chat later.
love.
She's eating like a champ.. in fact she had me go to matt's to pick a few homegrown cukes yesterday and I smuggled them in here.. with a vegetable peeler.. thank god I didn't have to go through a metal detector!! We asked Sheila, her head nurse, (I'll try to get a picture of her so you can meet her) if she could eat the cukes and because her numbers are still up high enough she can! I do have to wash them with soap and water, really really well.. and peel them away from her, then I can rinse them and give them to her.. they will be the cleanest cukes anyone's ever seen! She's so excited... hopefully they still taste like cucumbers! Everything tastes like metal.. I already told you, but I feel so horrible because she's trying hard to eat and drink, but it sucks that nothing tastes good. Not even coffee... I would be so sad without a great cup of coffee in the morning. She doesn't even like the taste of gingerale right now.. at least the Frito's still taste good.
We watched a movie last night.. Being Julia.. has anyone ever seen it? Probably not...it should be banned from being watched. It was horrible and she told me she loved it and it was such an awesome movie.. then at the end said... well maybe I saw it a long time ago and only once, so I really didn't remember it. Let me tell you.. it was on par with something Mariah Carey would make.. maybe worse.. unbelievable, right?! From now on I pick the movies!!!
We are glad to hear everyone's ladybug stories.. keep your eyes peeled! We had a couple little ladybugs swimming with us at girls night!! They just love mom's pool area! Don't we all...
We're doing some stretching now with the Occupational Therapist, hopefully mom's back will feel better, it's just a little tight because of lying in bed all this time.
We just had some mail brought into us, so keep those letters coming! She's looking forward to reading all your inspirational thoughts and wishes. She loves everyone and says thank you again.
Here's a pic of Jazzy and Meema from their visit this weekend.
chat later.
love.
Sunday, August 8, 2010
Day 12- I'm baaaack!!!
Hello! I'm back in Buffalo with mom and very happy to be here with her. She is looking cute in another pair of pj's... her nurses think she's so fashionable! This corner room is SO much better than the little cubby hole we were in before.. I have already re-arranged the furniture to optimize our space! Her room overlooks a courtyard (maybe between Roswell and Buffalo General?) and there are beautiful flowers and walking paths that we can see.. much better view than the last room. Mom's reading the OD right now.. looking at the Chanatry's ad, to be specific.. she hopes someone is taking advantage of the deals! She can't wait to get out there and "save some money" when she's better.
Mom's feeling pretty good today.. she's tired and a little achy, but I guess that is what is expected if you sit in a bed for 2 weeks. She's done reading and "resting her eyes" now. Her white cells do continue to drop (totally normal... afterall the chemo is killing them..) so she has been put on additional antibiotics to help keep infections away. One of them is giving her a bit of a metalic taste in here mouth so she's not too excited about eating and drinking.. although I brought Frito's and when the nurse said she could have them, she chomped them down without any complaints!! We also have some chocolate for later! ;)
Kelly and Sharon (Alee's) sent me with a few adorable hats (she loves them), a journal, notecards, enough stamps for a year, some books and a "prayer shawl" from the Carondelet Weavers (The Sisters of St. Joseph's). It's beautiful and will come in handy over the winter when it's cool.. I think our room is set on "Africa", so I'm not sure it will ever be cold in here.
The Girls Night crew also made mom a necklace with beads that we each picked out. She thinks it is beautiful and appreciates that everyone took time pick out a bead that had a special meaning (thanks to Amy, Kelly, Sarah, Lauren, Ed, Eva, Sherry, Mrs. Burney, Christen, and Jazzy for helping with that!! Hope I didn't forget anyone) And thanks to Kelly and her creativity for the beautiful little box the necklace came in.
I know I've said this before, but mom's so overwhelmed with all the love, support, generosity and encouragement that she is receiving from everyone. She is truly thankful and blessed to have all of you.
Dad is home for the week, so I'll be here keeping you updated. We are going to watch a movie now and then The Next Food Network Star before bed. Mom will try to get to all her emails tomorrow.
that's all for now..
love.
Mom's feeling pretty good today.. she's tired and a little achy, but I guess that is what is expected if you sit in a bed for 2 weeks. She's done reading and "resting her eyes" now. Her white cells do continue to drop (totally normal... afterall the chemo is killing them..) so she has been put on additional antibiotics to help keep infections away. One of them is giving her a bit of a metalic taste in here mouth so she's not too excited about eating and drinking.. although I brought Frito's and when the nurse said she could have them, she chomped them down without any complaints!! We also have some chocolate for later! ;)
Kelly and Sharon (Alee's) sent me with a few adorable hats (she loves them), a journal, notecards, enough stamps for a year, some books and a "prayer shawl" from the Carondelet Weavers (The Sisters of St. Joseph's). It's beautiful and will come in handy over the winter when it's cool.. I think our room is set on "Africa", so I'm not sure it will ever be cold in here.
The Girls Night crew also made mom a necklace with beads that we each picked out. She thinks it is beautiful and appreciates that everyone took time pick out a bead that had a special meaning (thanks to Amy, Kelly, Sarah, Lauren, Ed, Eva, Sherry, Mrs. Burney, Christen, and Jazzy for helping with that!! Hope I didn't forget anyone) And thanks to Kelly and her creativity for the beautiful little box the necklace came in.
I know I've said this before, but mom's so overwhelmed with all the love, support, generosity and encouragement that she is receiving from everyone. She is truly thankful and blessed to have all of you.
Dad is home for the week, so I'll be here keeping you updated. We are going to watch a movie now and then The Next Food Network Star before bed. Mom will try to get to all her emails tomorrow.
that's all for now..
love.
Saturday, August 7, 2010
We've moved!!
We are in our new digs. Rita is now in room 5419 so if you plan on sending anything, please update the address. Amy & Adam were here to help with the move so it wasn't too bad. Still, its amazing how much stuff we have accumulated already. I think its time to do some spring cleaning!!
Mary & Jazzy were here for a good part of the day and had a good visit.
Rita has had dinner and is now "resting her eyes". We all know that she can't nap but she is really good at "just resting my eyes"!!
Goodnight to all and thanks for all of those thoughts and prayers.
Dave.
Mary & Jazzy were here for a good part of the day and had a good visit.
Rita has had dinner and is now "resting her eyes". We all know that she can't nap but she is really good at "just resting my eyes"!!
Goodnight to all and thanks for all of those thoughts and prayers.
Dave.
Day 11 - Good Morning
Rita is doing great! She enjoying her breakfast right now and looking forward to her pills. I'm really impressed at how she has mastered this process of taking pills. She is at it right now so I am being entertained by her faces and motions.
Rita is excited to have Jasmine & Mary and Amy and Adam visit today. It should be a real good day for her. She is also hopeful that she will get to move to her new spacious room. I'm sure she will get right to work on rearranging the furniture and decorating the new space. Some things just don"t change!!
That's it for now. Love to all, Dave
Rita is excited to have Jasmine & Mary and Amy and Adam visit today. It should be a real good day for her. She is also hopeful that she will get to move to her new spacious room. I'm sure she will get right to work on rearranging the furniture and decorating the new space. Some things just don"t change!!
That's it for now. Love to all, Dave
Friday, August 6, 2010
day 10
I hope I'm doing this right. It's Friday and Sherry spent the night last night. It was nice to see her. We laid low and watched a Hallmark movie. She is updating a new address book for me which is a big help. I had my chemo yesterday which went fine. For awhile, I only have to have it on Wednesdays. Dave is getting out of work at 12:30 and will be here soon. He's such a big help to me The nurses and doctors are truly amazing. They have seen it all. They all think I'm so strong but it's hard thinking one day at a time knowing it's going to be so long. They said I might be able to change rooms today. The corner ones are 3 times bigger. Dave keeps sleeping in the reclining chair next to me instead of the small bed. I just hope his back hold s out.
Thanks for all the cards, text's and comments. My email is rbriggs 51@ gmail. Waiting for my lunch to arrive. They really have great food. Jasmine and Mary will get here tonight and stay in the hotel next to the hospital, I will see them tomorrow. Amy and Adam are coming out tomorrow. Sorry for grammer and mispellings. Love to all, Rita
Thanks for all the cards, text's and comments. My email is rbriggs 51@ gmail. Waiting for my lunch to arrive. They really have great food. Jasmine and Mary will get here tonight and stay in the hotel next to the hospital, I will see them tomorrow. Amy and Adam are coming out tomorrow. Sorry for grammer and mispellings. Love to all, Rita
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