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Thought I'd share a bit from dad's email regarding my mom's MRI and CT scans, done this past week:

"Bottom line, there is no evidence of malignant tumors in her brain or internal organs.  However, he said that the lesions on her torso, front and back, most likely are cancerous but they were outside the parameters of the scans and are topical.  Also, there is a suspicious mass under what was the left breast and he ordered a biopsy which was done this afternoon. It is most likely cancerous but the type of cell and its nature are unknown until the biopsy is analyzed and the oncologists make their determinations.  The lesions on the torso become painful throughout the day and she needs topical pain ointment applied.  All that said, the fact that her internal organs and brain show no sign of tumors is a miracle in itself and gives us hope that she will be with us for a lot longer than the doctors led us to believe."


It is truly amazing to think of how long she has had cancer and how devastating it has been to her whole chest area, but that it hasn't spread to her bones, brain, organs, etc.  The doctor and nurse doing the biopsy were shocked to find that mom hadn't had a double mastectomy.  They'd never seen anyone with that kind of damage that was still alive.  In fact, we've heard that several times from doctors and nurses.


There was more info from the scans:
"Danielle does have some aging issues in the brain, including a vertical “dead” area between the left and right hemispheres of the brain.  That may or may not be an issue but the consensus was that it was not.  She is slow in mental activities and memory and still moves slowly and needs a supporting arm to walk any distance.  She cannot sit long and becomes tired, needing naps morning and afternoon."


She said that her brain feels foggy all the time.  I wonder if that will come and go like so many of her other symptoms have, if it's a side-effect of her pain meds, or if it's the area in her brain that's "dead."


Her appetite is up a bit and she is enjoying her grandchildren's company.  My Aunt Michelle came to visit as well as Christian and his family.  My brother Erin just got into town to bring Ross to BYU and other kids to EFY and BYU camps.  Mom hates going to bed while her grandkids are still up playing "Great Dalmuti" or dodge ball.  She doesn't want to miss anything.  I don't blame her.


My mom's first grandchild (Lauren Ford - Nicole's oldest) got engaged recently and there's a darn good chance Mom will be around for the wedding in August.  The last part of my dad's email says:


"This is a tender mercy which has been extended to us for which we are grateful."  
Very grateful indeed!

Looking for miracles

Today I spent a frustrating morning listening to my mom tell the hospice nurse that she didn't have cancer. She's feeling better, eating better and all her sores have healed up. She says maybe she caught some sort of infectious bug on her travels with Dad.

 She doesn't ever remember getting a cancer diagnosis. She thinks that maybe the clinic in Phoenix cured her even though they said they couldn't get it all. She said to the nurse, "I saw people walk out of that clinic and they were cancer-free. Maybe I am too?"

 It is, honestly, heart-breaking to hear her talk like this. She's hoping for a miracle...everyone does, right? Isn't denial the first stage of grief? Three and a half months into this saga (which actually started 27 years ago) and we're still right at the beginning. Either she's a fighter or she's stuck.

 I dont know how this whole thing will end but I hope she gets her miracle....not sure how she'd handle anything else.

New post. I know, shocking, right?

The past two weeks have been baffling but good.  Mom's about 95% mentally with it - just having some short term memory problems.  Also, she's pretty hazy about her time in the hospital and a couple of weeks after that.

Her balance has greatly improved and she isn't taking naps like she used to. She's eager to get out of the house so we've arranged for her to spend time every week with Aunt Rallet and Aunt Annie.  Also my daughter Kate is helping out for a few weeks (while her grandpa is hosting the Ambassador to the Dominican Republic) and can take her wherever she wants to go.  Mom even went to church on Sunday!  She doesn't need/want someone to be with her all the time and is actually enjoying housekeeping, etc.

Her appetite has improved significantly and she's keeping most food down.  I don't know if it's because of the anti-nausea meds or what.  Who knows??

My mom LOVES to argue politics and is once again living up to her reputation as the most far-right leaning registered democrat I've ever known.  So it's back to normal, almost.

Except that my dad tried, once again, to lower her pain meds because she's doing remarkably well, and she woke up in the night with terrible pain in her arm and had to have morphine.  So we're back up to the normal medicine level.

It's weird that her mental state changes so much while she takes the exact same meds.  She often tells people that she can't remember things because of the medicine she's taking but that can't be it.  Her lucidity seems to come and go over the course of a few weeks but the pain med levels stay the same.

We're all wondering about her arm.  The hospice nurse said that once cancer is in her bones, it would progress pretty fast.  So is it not in her bones?  What is making her arm hurt so badly?  Just lymph nodes?  Also, her hand and arm have started to swell up again - which is worrisome.

Speaking of the hospice nurse, we have a different one now.  The former nurse, Melissa, has decided to do home health only so our new hospice nurse is Natalie (who was the very first nurse that ever came over but Mom got really mad and threw her out.  We're hoping she doesn't remember her from three months ago 'cause she's really VERY nice!)

Anyway, if you want to call, visit, or write to my mom, she'd love to hear from you....and she'd probably even remember it!

Mom in April

It's been a while since I posted anything and I feel kind of bad. Hopefully this post makes up for it a bit!

If you're counting, we're getting close to the three-month mark since the docs said my mom had two weeks to two months. It's been an interesting month and we still don't know what exactly is going on with mom. Our family has discussed the option of getting scans done - sometimes mom agrees, then she refuses. We would have to actually remove her from hospice care in order to have any diagnostics done, then place her back in hospice afterward. It's a lot of hassle with insurance. I don't know if Mom would agree when it came right down to it. But she might. It would be nice to know what's going on, exactly.

At the beginning of the month, my sister Nicole and her family came out to visit for their Spring break. The grandkids loved seeing her; Simone and Madi managed to take Mom for a couple of walks outside in her wheelchair. Nicole said that Mom was still pretty random in conversations and she slept a lot. Still, Mom was very glad that Nicole was here... and Wendy and I spent some much-needed time with our families. Wendy took her kids to California to see their aunts and I took my kids down with me and KP to Zion's National Park.

The next week was my kid's Spring break and we spent much of the time here with Mom. She also came over to our house so we could get some of our Spring cleaning and gardening done.

The next Sunday was Easter and everyone came over for dinner and the Easter Egg hunt.
It was so much fun with my college-age nieces and nephew here! Mom came outside to enjoy the weather and watch the egg hunt.  Dad was busy giving all the grandkids "special" eggs that the older kids especially loved! ($$)  He doesn't make them look for them though, which doesn't seem fair!

That next week after Easter was kind of strange.  First off, I noticed that Mom was much more coherent - inexplicably coherent for how random she had been just the week before. She was having normal conversations with me and the kids.  She was firmly in the moment and continues to be that way with just a few random thoughts thrown in.

Then, on Wednesday of that week, Mom went out to lunch with Aunt Rallet and Uncle Marion. When they returned to the house, they told me that Mom didn't remember anyone coming to visit or call her in the last few months! She didn't remember Nicole coming the week before. She was actually in tears saying that she had been feeling terrible that no one cared about her enough to come see or call her. Poor thing!! I showed her the little book by the front door that everyone writes in when they come to see her and she was so surprised!! She didn't remember ANYONE that came. In fact, she still says to me, "Are you here to visit me today? That's so nice! I saw Wendy today too!"  (We both come over almost every day.)

Anyway, I think that's getting a little better because she remembers the Albanian Ambassador coming to meet her and she remembers hearing little Lily Olliverson coming over to play her violin so beautifully. Just don't feel bad if she doesnt' remember a phone call or a visit...but be sure to write in the little book by the door if you come.

Speaking of Lilly, my mom seems to respond really well to live music; it cheers her up, I guess. She actually likes it when Alexander and Andrew come to do their violin or cello practice at her house.  If you want to come over and play something for her, please do. There's no piano at my parents' but if you have anything else, she'd really enjoy it. Also, she loves to sing so if you want to come sing for her, she would probably enjoy that as well.



Now for this week: we've hit a bit of a rough patch.  She was in the car with me last week when I picked up Jack from preschool and she said she felt like she was going into a tunnel-dark place. Scary!! I got her home pretty quick and the hospice nurse came over. She said her blood pressure was quite low but she didn't know why. Since then, she's been pretty lethargic and sleepy.  Dad's been giving her Gatorade this weekend in case her electrolytes are low.  Also the pain in her arm has been quite bad today. Dad must have given her some morphine this morning because she's been sleeping for quite a while.

Mom's a trooper and she's not about to give up. She made a comment when she came home from lunch with Aunt Rallet (after Aunt Rallet had again explained about Mom's cellulitis and about being in the hospital, etc.) She said, "Wow, for how bad I was in the hospital, it's a wonder I've made it this long! There must be something I still have to do. I wonder what it is?" I don't know if she'll be able to hold onto that thought for long but that's where she is right now.  Kind of a good question for everyone I guess.

Anyway, I hope you have a good Sunday.  My daughter Kate comes home from her first year of college this week and she didn't think her Grandma would still be here.  It's a gift.

Still Fighting

It's hard to write a blog post where you admit that you've been arguing with your terminally ill mother but there it is. It seems as if she's reached a breaking point with her meds and is trying to refuse them all. We've coaxed, cajoled, tricked, etc. to get her to at least take her pain meds. Tonight she said it was absolutely the last time she was going to take them.

I hope not. Tareq should be home tomorrow and he has a way of sweet-talking her.

Nicole and her family arrived Friday afternoon. Poor Mom feels like she's supposed to be cleaning, straightening up, etc. while they're here...even when we all protest and tell her we can do it. She's trying to arrange meals (which is sort of funny since dad normally does all the cooking) but she loses her train of thought and gets frustrated.

Mom's been having more pain in her arm today...more than the regular pain meds will control. I think she may have to take some morphine. The hospice nurse thinks we'll gradually have to start ramping up the morphine as her pain increases; to the point where, sometime in the future, she may have to have a morphine pump. When that happens, she won't be conscious much.

On the bright side, my sweet sister-in-law, Angela, (Kevin's brother's wife) sent my mom a beautiful pink quilt.  Mom loved it and I couldn't hold back the tears. It was very sweet and we'll treasure it always.

Thanks for your love, support and prayers. Several people brought meals in for my family recently and it lightened my burden. I regularly feel a strength beyond my own and I know it's because of your thoughts and prayers. God bless.

Lots of anxiety

Today is Wednesday, March 28th and tomorrow marks the two month date from the time mom went into the hospital with an attact of cellulitis. The doctors gave her two weeks to two months so she's beat them so far!

For the last few days, Mom's been having quite a bit of anxiety. The hospice nurse says that's normal. A bit of it's her pain meds but the bulk of it is a result of the cancer spreading to her brain.

She's worried about things she hears on the news. Today she told me she was worried because she didn't know what was going on. She said she had this thin little thread that she was trying to hold on to.

It's hard for her to talk on the phone because she doesn't always understand what people are saying and she's afraid she's forgotten something important. She asks where people are all the time and who's in charge. It's different from before because she feels driven to figure things out; to get to the bottom of what's going on. Sometimes she thinks we're part of a conspiracy to get her to do something.

She asked me today what we were doing and I said we could watch some TV, go for a ride in the car, sit outside and soak up some sun, etc. I asked her if that was OK and she kept saying that, no, that was what I believed to be to be true but that it wasn't necessarily reality.

It's very frustrating and takes a lot of creative communication to keep her from sort of freaking out. We also give her some anti-anxiety meds. It takes a toll on those of us taking care of her because she's agitated so much of the time. She's very unsteady on her feet but her anxiety gets her up walking around the house looking for things or people, straightening and cleaning for non-existent guests, trying to find her keys to go somewhere important, trying to find money somewhere for someone, etc.

I think we may try to change what we have on the TV so that we don't watch the news and don't discuss politics (easier said than done in the Butler house, I'm afraid!) Also, we'll have to figure out what to do with the phone. She got into the strangest conversations with a telemarketer-type person the other day because I didn't happen to catch the phone before she did. Maybe it serves them right though! :)

Mom's excited for my sister Nicole to come visit next week. It'll be a good change for mom and Nicole's kids are super excited to see Mom and participate in the Butler family Easter egg hunt! I'm glad Mom will be around to see it this year. It also gives Tareq, Wendy and I a bit of a rest. The ward too. They've been so helpful, I can't even tell you.

Here's to a good week!

Rollercoaster

After Mom's bad days the first part of this week, she's had a few good days lately - kind of up and down like a rollercoaster. She's been up and about with a trip to Target with me and a trip out with her sister, Rallet. Our time at Target was interesting since I had my pouty 4-year-old with me...and my mom kept rolling herself away in her wheelchair. I don't usually bribe my kids for good behavior but the $$ I spent on a toy for Jack-Jack that day was worth every penny!

The last few days she's been feeling better but she's also been pretty fiesty. She says she feels like we are trying to railroad her into doing things she doesn't want to do. It's hard to know when to stop helping - like for instance when I picked out an outfit for her and she said she wanted to save it for a nice occasion (?? It wasn't fancy!) I told her she could wear it anytime she wanted and she told me to stop pressuring her!

She has so many up and down days that it's hard to pull back from helping on the up days. I'll tell her that I can do the dishes and she feels like I'm telling her what to do. Yet on other days, she doesn't feel well enough to even get out of bed for very long. I feel like a jerk for ever letting her do the dishes, even when she insists! Tareq says to not take any of it personally and I don't--I'm just trying to do the right thing for her. It's difficult.

So anyway, I walk in today to sit with Mom while my dad goes to church and, with a big smile, Mom says, "You are going to love meeting your Grandpa Christiansen some day! He'll tell you he is so proud of you and give you a great big bear hug!" And I get a little misty-eyed because she's talking about a grandfather I've never met...and because she's thinking about seeing him again.

And then she tells me all about her outing with her sister where they stopped a missle from exploding at the last minute. Either that was a very exciting afternoon with Aunt Rallet or it was the ending to the movie she watched last night. Either way, it's a rollercoaster everyday!

Stupid cancer

My poor mommy didn't eat anything today. I did get her to sip some Gatorade. She's pretty weak and has been sleeping a lot. Somehow she managed to throw up tonight anyway. She's still up and walking around from time to time.

Hospice delivered a wheelchair today and Dad took Mom out for a spin. The weather is still really nice and she enjoyed it.

Unfortunately, Mom had more pain in her arm so she had to have extra meds today. Her lymph nodes are completely messed up in that arm and that's what usually causes her the most trouble.

She's also getting really disjointed in her thoughts. It's like she's gone from paragraphs to sentences to phrases to fragments in her thinking. Thoughts aren't connected all the time with what's going on; it's like joining a conversation mid-way through and then losing it. My poor brothers and sisters call often to talk with mom and the conversations are often confusing and frustrating.

The hospice nurse came yesterday and said the naps would get longer and longer as Mom lost her energy. We're watching for that. How can she have any energy if she's not eating?
Stupid cancer.

Sunshine!

Today was such a nice day out! We spent some time on the back porch soaking up the sun... Mom even rolled up her pant legs to try to get a tan. :)
She had a couple of long naps today. That together with the sunshine helped mom to be pretty chipper all day.

My sister Rallet came for a short visit this weekend with her girls. Mom has been talking about her coming for quite a while. I think the visit was a little difficult with Mom's memory going and all. She's not the same person and it's a bit hard for friends and family to see it. Also, Tatyana and Vasha came to visit. I'm sad I wasn't there to see them!

Mom still isn't eating much. Wendy and I noticed that when she does accept something, she usually sneaks it to her dog instead of eating it. I guess that's what we get for pushing! She says she has no appetite and nothing tastes good. She hates the protein drinks and the Gatorade. I guess the upside is that it eliminates the throwing up which really upsets her.

Mom talked today about this long dream she's been having about being sick. She asked me if it seemed like it had been a long time and I said yes. She said she couldn't wait till she woke up. I guess the hospice nurse came over and Mom was mad that she talked about dying. Mom just wanted to feel better. We all wish she could and we're trying to keep her as comfortable as possible.

We still have the most amazing people helping out...couldn't do this without you. Thanks!!

Fighting!

We Butlers are notorious for fighting. (Just verbally, I hope!!) I blame it on our Irish DNA and the need to fight for our rights! Anyway, that's what I think of when my mom gets really confrontational about taking medicine. I coaxed, cajoled, reasoned, and finally insisted yesterday that she take her nighttime meds. I don't do it very often - usually that job falls to my brother Tareq. He has talked about it but last night was the first time I experienced it first hand.

She insists that she's not in any pain and doesn't need meds. Unfortunately it's hard to get her to understand that if we lowered the regular pain meds, then she would be in so much pain that we'd have to give her morphine which knocks her out. I think Tareq gets an extra gold star for being so kind and sweet yet firm with my mom. He is our liason with hospice and knows exactly what needs to be done. He never loses his temper or says anything harsh.
Love you, T!

She couldn't keep anything down yesterday and is looking really thin. She's a fighter though; for good or bad, she's a fighter!

In the Dark

Things have changed a bit over the past few days. While my mom has been up and around, carrying on conversations, etc. for the past several weeks - just this weekend, she has gotten a lot less steady and less able to carry on conversations. I thought about telling you all to give her a call now while she's still able to talk to you, but I'm not so sure she'd be up to it.

On Saturday, we went for a drive up Provo canyon to see the beautiful snow. Just as we got up to Sundance, the sun came out and lit up the slopes and all the snowboarders. It was beautiful.

I popped in a CD of piano music I happened to have in my car and the first track on there was Claire de Lune by Debussy. My mom listened for a while with her eyes shut and then said, "My father used to play this." Same thing with several other tracks on the CD. We just listened for a while and then she told me some stories about her dad, with whom she was not close. She said, "I guess Daddy doesn't want to be forgotten."

Sunday morning Mom was thinking of going to church but was too tired by the time she got showered and dressed. That's a bit different from the last three weeks where she'd get all ready and then be able to go shopping, for a ride in the car, etc. She seems to be much more tired and sleeping lots of the time. I wish we knew what was caused by medicine and what was caused by the cancer. We're in the dark so much here.

Why did she have a few days where her appetite came back and she could keep everything down? Why did she start throwing up again today? Why does she have lots of pain one day and nothing the next? It's a puzzle that I don't think we'll ever understand.

The last few nights, she's been jumbling things up while talking to me. I know other people have experienced it with her too. I think she sort of knows she's confused because often, she'll just nod and say, "MmmHmm." She has even been saying some things in German.

She seems a lot more frail in just the last 2-3 days. I am quite often talking to her rather than talking with her. It makes me feel like we're losing her more than just when she sleeps a lot. Does that make sense? It's hard to ask her a question and get a blank look or a random answer. I think both our family and my mom are in the dark right now - not understanding, not comprehending what's going on, just knowing it's cancer.

She said to me randomly Monday night, "I won. I won, didn't I?" All I could say was yes.

Love and support

I'm king of amazed at all the people who come over to help my mom. How do people do this with no support system? It would be sad, I think. The hospice nurse is very kind but she doesn't know my mom. She can't talk with her, ease her concerns and make her laugh like we do.

Mom has her kids and Dad to help with the day to day stuff, ward members to bring in meals and sit with her, sisters who like to take her shopping or out to lunch (when she's feeling well,) and friends who send cards and come visit. When you understand where you're going, I think the journey must be easier with a bunch of people walking along with you.

I was thinking about that this morning when I went over to Mom's. My niece, Lauren was there helping my mom with her shower and then she cleaned the entire kitchen! We also got an update on the new boyfriend. :)

Mom seems pretty shaky today. She took a fall in the bathroom this morning while reaching for something on a low shelf. Dad heard her fall and ran in to find her flat on the floor. Mom says she really bruised her ego - at least nothing hurts right now. We're keeping a pretty close eye on her and, sadly, a shopping trip with her sister, Rallet had to be postponed.

She's still not eating much. We have to keep remembering what the hospice nurse says about mom's appetite and how it's OK if she doesn't want to eat. Old habits die hard, right?

Speaking of old habits, we've all been laughing a bit at my mom's insistence on watching Downtown Abbey with many of the visitors who come over. She doesn't remember that she's already watched it and she loves it every time!

I also got her to admit that I'm her favorite....but she doesn't remember that either. Dang! ;)

One Handsome Guy

Every night when I get my mom ready for bed, she tells me to look over at a picture on her bookshelf of my dad as a young man. She says, "Have you ever seen such a good-looking man?"

Mom seems to have hit some sort of vague plateau. Her chest isn't getting any worse and she still can't keep much food down. The hospice nurse says her heart and lungs sound good. I do think her memory is getting worse though. That's ok in a way though because every night I get to hear about how my dad was so handsome that he made my mom's "socks roll up and down."

Mom's hoping to have some grandkids come for spring break in a few weeks. She wants to go see the tulips at Thanksgiving Point and maybe have tea at the Grand American. I'm looking forward to it.

Chats with mom

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.

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!

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!

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.

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!

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.

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!!