I like to call my mom "Muti" which is German for "Mom" or "Grossmuti" which is "Grandma." She has told us a lot over the years about the time she spent working as a missionary for two years in Germany. Last night, after she was in bed, she talked to me for quite a while about the amazing people she met in Germany and the difficult times they had in the aftermath of WWII. It was an amazing time in her life. She mentioned one woman in particular who was so very sweet - mom particularly asked her to be one of the first to meet her in heaven when she died. I imagine she'll be there to welcome my mom home with a big hug.
Mom's arm has started to bother her more and more. The lymph nodes have been severely affected by cancer and her arm is swollen most of the time. It seems in the last few days that different parts of her arm have been hurting. She had to have Morphine yesterday - which she hasn't had in quite a while. Also, the cellulitis is giving her some trouble with pain, itchiness and a shivery, cold feeling...kind of like a fever gives you but her temp is not up.
She also can't keep anything down still, even meds are a bit difficult. We've been sneaking her some Ensure/liquid nutritional stuff and telling her it's really healthy, etc. She won't eat anything with sugar so Tareq tells her they've taken the sugar out of it. :) She needs something in her stomach to take some of her meds.
My dad and Tareq gave my mom a beautiful blessing last night. We felt very peaceful afterwards- I wish all my siblings had been there so they could have felt that peace as well. Maybe that's why my mom was talking about her German friend coming to meet her in heaven.
Danielle
Tuesday, February 28, 2012
Sunday, February 26, 2012
Ups and downs
This past week has been kind of strange. It seems like one day my mom will be unable to keep food down, forgetfull and unsteady on her feet. The next day, she's feeling great and is trying to do housework! I guess I don't get how it works but I'm glad she has the good days.
She doesn't remember most of the people who came over the first two weeks that she was home. I don't know if that has anything to do with the cellulitis or if it's short term memory loss. Either way, if you want to visit her again, she'd probably love it.
She had a short bout of cellulitis again this week. Her regular oral antibiotic evidently took care of it but she has been having a bit more pain...so the experiment with less pain meds didn't really pan out. We're back up to the full dose, three times a day on the advice of the hospice nurse who I sometimes mistake for an angel. She always tells us we're doing a good job and makes me feel competent at least for a little while. Tareq's the competent one, having had to take care of a little son with lukemia. He can talk shop with the nurse while I just nod and have him explain everything later.
This past week, dad's boss, President Holland from UVU, came to visit mom. It was so nice for him to stop by with his busy schedule! My mom was happy to see him and got all dressed up with cute hair and makeup to see him. She got busy cleaning the house for his arrival till Wendy and I realized what she was doing and told her we could take care of it all!
When Mom was at the hospital, the doctor told us she had two weeks to two months. We're at four weeks now so I guess we're lucky!
She doesn't remember most of the people who came over the first two weeks that she was home. I don't know if that has anything to do with the cellulitis or if it's short term memory loss. Either way, if you want to visit her again, she'd probably love it.
She had a short bout of cellulitis again this week. Her regular oral antibiotic evidently took care of it but she has been having a bit more pain...so the experiment with less pain meds didn't really pan out. We're back up to the full dose, three times a day on the advice of the hospice nurse who I sometimes mistake for an angel. She always tells us we're doing a good job and makes me feel competent at least for a little while. Tareq's the competent one, having had to take care of a little son with lukemia. He can talk shop with the nurse while I just nod and have him explain everything later.
This past week, dad's boss, President Holland from UVU, came to visit mom. It was so nice for him to stop by with his busy schedule! My mom was happy to see him and got all dressed up with cute hair and makeup to see him. She got busy cleaning the house for his arrival till Wendy and I realized what she was doing and told her we could take care of it all!
When Mom was at the hospital, the doctor told us she had two weeks to two months. We're at four weeks now so I guess we're lucky!
Wednesday, February 22, 2012
Last Night
Last night I was helping mom up the stairs to get ready for bed. She turned and said, "So, are you going to be helping me tonight?" I said, yes, that I helped her every night. She said, "Well, where have I been!?!" :)
Did I mention that I hate cancer? Yep. I haven't been this detailed before but Mom has Stage IV cancer which means that the breast cancer has spread to other parts of her, most notably to the skin on her chest and her lymph nodes. Doctors also surmise (from the many nodules under her skin, I think??) that it has spread to other organs. She also has some large spots on her back now that are painful.
I feel a little helpless, I guess. I wish I could take it from her but the only thing we all can do is to make her feel comfortable and as happy as the situation will allow. Mom got a card and letter from her dear high school friend yesterday and was quite touched. She had a great "crowd" of friends at Provo High and they've been very supportive with cards and visits.
I also appreciate the words of support and love for me; the prayers, the occasional meals and babysitting. It's hard for me to accept help sometimes but I'm learning now! Thank you for being such great examples of Christ-like service!
Mom is going shopping with Wendy for a bit today - I assume that means they'll find a wheelchair (or maybe one of those motor-scooter things!) and go cruising around the mall or Target or Ross. Mom hates being cooped up at home and it's been ages since she had a new book. Hope they have fun!
Did I mention that I hate cancer? Yep. I haven't been this detailed before but Mom has Stage IV cancer which means that the breast cancer has spread to other parts of her, most notably to the skin on her chest and her lymph nodes. Doctors also surmise (from the many nodules under her skin, I think??) that it has spread to other organs. She also has some large spots on her back now that are painful.
I feel a little helpless, I guess. I wish I could take it from her but the only thing we all can do is to make her feel comfortable and as happy as the situation will allow. Mom got a card and letter from her dear high school friend yesterday and was quite touched. She had a great "crowd" of friends at Provo High and they've been very supportive with cards and visits.
I also appreciate the words of support and love for me; the prayers, the occasional meals and babysitting. It's hard for me to accept help sometimes but I'm learning now! Thank you for being such great examples of Christ-like service!
Mom is going shopping with Wendy for a bit today - I assume that means they'll find a wheelchair (or maybe one of those motor-scooter things!) and go cruising around the mall or Target or Ross. Mom hates being cooped up at home and it's been ages since she had a new book. Hope they have fun!
Tuesday, February 21, 2012
How fragile we are
Today I noticed a little more memory loss, more questions, more repetition with my mom. I never thought of how fragile memories are. She's having a hard time with names. I think she's watched the same movie a couple of times this week and isn't aware that she's seen it before. She's aware that her memory is going because she asks quite tentatively sometimes and then says that of course, she knew!
Did I mention that my parents' ward is awesome? They have people coming over every day at two for a few hours until my dad gets home so that Wendy and I can get some stuff done at home with our kids. It's very nice and my mom loves the company.
We've lowered Mom's pain meds a bit...she wasn't happy taking so much so we're trying to adjust and give her enough to make her comfy but not groggy or sleepy at all. She's the boss, right?!
And of course we'd like her to eat more but today she said she just had no appetite at all. Only Wendy's awesome lunches are remotely tempting. If you know my mom, you know of her love of reading through cook books. She' got a few hundred. Wendy's been going though a few of them and making things that my mom had marked.
Tonight was fairly quiet and mom and dad watched a movie together...with Katya snuggled up right next to Mom. That dog has noticed that something's amiss and doesn't stray too far from Mom's side. Can't say that Mom minds that too much.
Did I mention that my parents' ward is awesome? They have people coming over every day at two for a few hours until my dad gets home so that Wendy and I can get some stuff done at home with our kids. It's very nice and my mom loves the company.
We've lowered Mom's pain meds a bit...she wasn't happy taking so much so we're trying to adjust and give her enough to make her comfy but not groggy or sleepy at all. She's the boss, right?!
And of course we'd like her to eat more but today she said she just had no appetite at all. Only Wendy's awesome lunches are remotely tempting. If you know my mom, you know of her love of reading through cook books. She' got a few hundred. Wendy's been going though a few of them and making things that my mom had marked.
Tonight was fairly quiet and mom and dad watched a movie together...with Katya snuggled up right next to Mom. That dog has noticed that something's amiss and doesn't stray too far from Mom's side. Can't say that Mom minds that too much.
Monday, February 20, 2012
Friends and family
My mom has been having lots of visitors lately. My mom's sister Michelle and her husband Ron were here for the weekend. Also, my dad's two sisters Edith (and Uncle Lee) and Annie (and Uncle Marlow) came to visit also. Edith and Lee are from Oregon and I'm so glad they could make to trip to come see mom.
Thanks to my Aunt Annie for the great pictures!
Also, when my mom was in the hospital, my dad's brothers, Tom and Bob (and Aunt Sandy) came to visit. I'm so glad that my dad's family and my mom's family are so supportive of my parents. It's great to see!
Also, when my mom was in the hospital, my dad's brothers, Tom and Bob (and Aunt Sandy) came to visit. I'm so glad that my dad's family and my mom's family are so supportive of my parents. It's great to see!
Sunday, February 19, 2012
History
I thought I'd take a moment and get you up to date on mom. First, you should know that she has been battling breast cancer for 25+ years. It's been a long struggle for her and she's even now not giving up the fight. Secondly, she chose to fight her cancer solely with non-traditional medicine over all these years...so when I say she has not given up the fight, it means that she continues to follow her strict diet and juices (though I don't think she's still taking all her supplements, etc.)
It also means that she has never has significant care from an oncologist and that she won't allow any xrays or scans to see where the cancer has progressed. Pretty much, we are guessing as to the extend of her cancer, though the outward signs are fairly good indicators of what's going on.
Several years ago, the cancer had progressed to the point where she agreed to go to an alternative clinic in Arizona for IPT therapy. Unfortunately, this past December, my mom was admitted to the hospital for a case of cellulitis and our family found out that the IPT therapy had not cured her but that her cancer was quite advanced. Mom had tried to spare our feelings by not telling us.
After the time in the hospital in December, she again came down with cellulitis and a blood infection three weeks ago. The doctors weren't sure that she would survive the cellulitis so they advised us to have our family all gather to spend time with mom. We had a great weekend with a big dinner that Saturday night for our whole family. I'll try to post pictures later. Mom loved having everyone here though she was still taking lots of pain meds and slept a lot.
Since then, the antibiotics have beaten back the infection and the pain in her arm has lessened significantly. She's also able to make do with a different pain med that doesn't make her drowsy or loopy. So now our family is just trying to make mom comfortable and to listen to her wishes. We don't have any timelines or answers.
You should know that we all appreciate your thoughts and prayers. It's been a difficult time for all of us, especially my Dad.
It also means that she has never has significant care from an oncologist and that she won't allow any xrays or scans to see where the cancer has progressed. Pretty much, we are guessing as to the extend of her cancer, though the outward signs are fairly good indicators of what's going on.
Several years ago, the cancer had progressed to the point where she agreed to go to an alternative clinic in Arizona for IPT therapy. Unfortunately, this past December, my mom was admitted to the hospital for a case of cellulitis and our family found out that the IPT therapy had not cured her but that her cancer was quite advanced. Mom had tried to spare our feelings by not telling us.
After the time in the hospital in December, she again came down with cellulitis and a blood infection three weeks ago. The doctors weren't sure that she would survive the cellulitis so they advised us to have our family all gather to spend time with mom. We had a great weekend with a big dinner that Saturday night for our whole family. I'll try to post pictures later. Mom loved having everyone here though she was still taking lots of pain meds and slept a lot.
Since then, the antibiotics have beaten back the infection and the pain in her arm has lessened significantly. She's also able to make do with a different pain med that doesn't make her drowsy or loopy. So now our family is just trying to make mom comfortable and to listen to her wishes. We don't have any timelines or answers.
You should know that we all appreciate your thoughts and prayers. It's been a difficult time for all of us, especially my Dad.
Friday, February 17, 2012
Today
Howdy folks! I thought i'd start this blog so you could get regular updates on my mom and her cancer. If you don't already know, my name is Dalliene Butler Jessop and I'm Danielle's oldest and favorite daughter (a running joke around here!) I live a few blocks away from my parents in Orem and I'm able to go over there for several hours every day. Also, my brother Tareq and his wife Wendy live a few blocks closer and are there a lot too.
First let me start with today (that's kind of easier for me.) My brother Tareq is spending the nights at my parents' house since my sisters and sister-in law have gone home. He said mom had a good night last night. Mom hasn't been eating much lately but she managed a bit of breakfast and lunch today. As a bit of a sidenote, my amazing sis-in-law, Wendy, comes over every day to fix my mom an irresistible lunch. Even if mom can only eat a few bites, she absolutely LOVES it. We are so blessed to have Wendy in our family.
My Aunt Michelle came to visit from Oregon this weekend - a bit of a surprise (for me at least!) My mom really loves having her sisters around so I can't think of anything better to cheer her up. The hospice nurse came as well to redo the covering on mom's port (I'm sure there's a medical term for it but you'll just have to put up with my ignorance.)
Anyway, we have someone with my mom all the time because she's taking pain medicine and she's quite unsteady...and also because some of her symptoms seem to crop up pretty fast. In the past few weeks we've taken turns while my sisters Nicole and Rallet were here (who also, by the way, think they're mom's favorites!) Also, Christian's wife Lara was here for several days - all three were so great while they were here and we miss having them around.
The plan, when I left today to do my carpool, was for my dad to take Mom and Aunt Michelle to a movie since my mom is basically cooped up all day in the house. I'm not sure if they went (or if mom stayed awake the whole time!) but I'll let you know. I think my dad is working half days right now that mom's condition is fairly stable.
My parents' ward have been bringing dinner in every night since my mom came home from the hospital. They've also brought over lots of cards and notes to cheer mom up. I'm pretty sure some of the nicest people on earth live right here in Orem. :) I know it's a sacrifice and they have their own families to feed but all of us Butler kids are so grateful to you!!
Anyway, I'll be headed over to Butlers' again tonight to get mom ready for bed, bandage her up, give her some meds, have family prayer, and then chat until she drifts off to sleep. She's anxious about everything, not wanting to inconvenience anyone (if you know my mom, you recognize that!), sad about little things like the fact that she can't be the one to drive her grandaughter, Sydney home. We've had some long talks about death and heaven and cancer. I don't know if anyone is prepared for death. I hope she is when the time comes. I hope we're all ready when her time comes.
Follow-up: They did go see a movie today - pretty sure Harrison Ford would make me feel better!!
First let me start with today (that's kind of easier for me.) My brother Tareq is spending the nights at my parents' house since my sisters and sister-in law have gone home. He said mom had a good night last night. Mom hasn't been eating much lately but she managed a bit of breakfast and lunch today. As a bit of a sidenote, my amazing sis-in-law, Wendy, comes over every day to fix my mom an irresistible lunch. Even if mom can only eat a few bites, she absolutely LOVES it. We are so blessed to have Wendy in our family.
My Aunt Michelle came to visit from Oregon this weekend - a bit of a surprise (for me at least!) My mom really loves having her sisters around so I can't think of anything better to cheer her up. The hospice nurse came as well to redo the covering on mom's port (I'm sure there's a medical term for it but you'll just have to put up with my ignorance.)
Anyway, we have someone with my mom all the time because she's taking pain medicine and she's quite unsteady...and also because some of her symptoms seem to crop up pretty fast. In the past few weeks we've taken turns while my sisters Nicole and Rallet were here (who also, by the way, think they're mom's favorites!) Also, Christian's wife Lara was here for several days - all three were so great while they were here and we miss having them around.
The plan, when I left today to do my carpool, was for my dad to take Mom and Aunt Michelle to a movie since my mom is basically cooped up all day in the house. I'm not sure if they went (or if mom stayed awake the whole time!) but I'll let you know. I think my dad is working half days right now that mom's condition is fairly stable.
My parents' ward have been bringing dinner in every night since my mom came home from the hospital. They've also brought over lots of cards and notes to cheer mom up. I'm pretty sure some of the nicest people on earth live right here in Orem. :) I know it's a sacrifice and they have their own families to feed but all of us Butler kids are so grateful to you!!
Anyway, I'll be headed over to Butlers' again tonight to get mom ready for bed, bandage her up, give her some meds, have family prayer, and then chat until she drifts off to sleep. She's anxious about everything, not wanting to inconvenience anyone (if you know my mom, you recognize that!), sad about little things like the fact that she can't be the one to drive her grandaughter, Sydney home. We've had some long talks about death and heaven and cancer. I don't know if anyone is prepared for death. I hope she is when the time comes. I hope we're all ready when her time comes.
Follow-up: They did go see a movie today - pretty sure Harrison Ford would make me feel better!!
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