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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!