Every week I talk to MaeLynn and ask her "What's new? What's happening? What do you want me to put on your blog???" And every week it's the same. "Oh I don't know. Nothing's happening."
So let's just say that no news is good news. :) She isn't getting too terribly worse, but of course she isn't getting any better, either. She said she has stayed the same weight for about four weeks now! Wahoo! This is amazing since she doesn't have hardly any appetite. She said that when she's in social situations, she can eat more, but if it's just up to her....she has no desire to eat.
The hospice nurse is still coming about once a week to check on MaeLynn and take all her vital statistics. The social worker has been a little bit more hit and miss. She comes to talk with the older girls, but when she comes ALL the kids want to do things and it gets quite chaotic. MaeLynn said they're going to try to get Kendall to go talk to the social worker in her office instead of at home.
Mae and Andy still don't feel a huge need for psychoanalysis and support. (I've been trying to convince them to find a young-terminal-cancer-patient-support group to join...and I think they will) MaeLynn feels like she runs the whole gamut of emotions weekly/daily. Some days she's in denial. Some days she tries bartering with the Lord. Some days are okay. Some days are just way too much to handle. She says that just getting out of the house and out into some sunshine and fresh air does wonders for her. She told Andy, "Keep dragging me out of the house no matter how much I complain or say I don't want to!!!"
How she physically feels depends on the day. She said, "Who knows what makes it different?? Today I have a lot of energy. I can go outside and push the kids on the swing. But yesterday? I didn't even want to move. You know how you feel when you have the flu? I barely made it out of my bedroom yesterday...spent a little while on the couch....headed to the kitchen for a few minutes...then headed back to bed."
I asked her what she thought the ratio was between good and bad days. She said, "Maybe about 4 good days and 3 bad days each week."
Sundays are especially hard and she wonders what the secret is to turning Sundays from bad days to good days. They always end up being stressful, disastrous, and pretty much no fun :)
If anybody has any tips...could they let her know?
One exciting thing is that she and Andrew got a new bed!!! It is so much comfier than the pancake they used to sleep on. Unfortunately MaeLynn doesn't get to spend extended periods of time on it. She now has to get up to go to the bathroom about seven times a night. Pretty much every hour on the hour. In fact she said one night last week she was so exhausted and so miserable that she prayed that she could just sleep for four hours straight. (Reminds me of being a new mother) Anyway...her prayers were answered and she said the second she woke up she gave a prayer of thanks. What a miracle!!
Andy continues to be doing okay adjusting to home life. He's really good at ignoring the screaming and told someone on Facebook that "All the days run together." Mae was walking by the computer when he was typing that and just burst out laughing. "See how it feels!?"
There haven't been any big trips or exciting things going on these past few weeks, but MaeLynn has been trying to write letters to her kids for important events that will happen later in their lives. She said it has been really hard, emotionally. She's also making video clips of herself talking to/about her kids. Memories that she has of them when they were babies, cute things they do, their likes and dislikes at this point in their lives. Things SHE loves about them.
She's really grateful for the continued help from friends, neighbors, ward members, family, complete strangers. She said since Andy's been home there haven't been as many people coming over as often. Some days that's good because she was starting to feel like her house was Grand Central Station. Some days, though, she wishes she could see more friendly faces. She always appreciates notes in the mail and phone calls.
Next week will be spring break for Kendall and Ellie so the family is planning on spending a few days in St. George at a friend's condo. MaeLynn is worrying about the drive totally wiping her out, so Andy found a one-way plane ticket from Vegas to Salt Lake for her. She'll drive down with the family, but then fly home while Andy drives with the kids. WOW! MaeLynn isn't worried about Andy. He'll just put on his driving face and GO. She's a little worried about the kids....hopefully everyone's in one piece when they get back to Logan. Her kids (bless their hearts) are not known to be the best car travelers.
One last note...MaeLynn has been reading a couple of books lately that have been really enlightening. One is called "Cancer Talk" and has really opened her eyes to things people, and in particular, COUPLES, go through with cancer. It really is a team effort. If one spouse has cancer, it's not just that one that has to deal with it. And it's so important for the healthy spouse to get love and attention as well as the sick one. A lot of the time the caregiver is passed over in our worry and concern for the sick person.
The other book she's reading is called "Living With the End in Mind". It's written for everyone, not just terminally ill people. It's "a practical guide to facing mortality." It also has been an eye-opener fo her to physical, spiritual, emotional, and mental health.
All in all, MaeLynn seems to be doing okay. She's trying really hard to take life one day at a time. She wants to live in the moment. A good friend told her, "Depression is the disease of living in the past. Anxiety is the disease of living in the future." MaeLynn is trying to keep both of these diseases at bay, though it can be very very hard. She keeps positive and doesn't give up just living daily life. She's a great lady.
Monday, March 29, 2010
Thursday, March 4, 2010
So....how does she look?
Here she is, Miss America! I finally convinced MaeLynn to pose so that we can see her well. I don't know if it's the morbid side of me, but I thought people might want to see how she's faring. The inevitable happened the other day....someone asked her if she was expecting. Awkward!!! She's thinking, "Um, no. This is just my parasitic tumor, Wilma. Say hello."
Of course she didn't SAY that, she was very polite.
She actually does call the tumor(s) Wilma, though. It's kind of funny in that crazy I'm-dying-so-I've-got-to-find-humor-in-something sort of way.
Monday, March 1, 2010
February Was Good
So here we are in March already! MaeLynn has had some good experiences these last few weeks!
Her trip to Vegas with her biological family was a lot of fun. She was really tired when she got home, but was glad she went.
Having Andrew home with her all the time has been beyond wonderful. She really loves having him there, and he lasted three whole days before he needed a short break! They'll just keep working on building up his stamina :). He's been a huge help to MaeLynn. She says he's always there at her beck and call. He helps the kids. He disciplines the kids...(he's not the softy that Mae is :) But they LOVE having him there.
She was a little worried that they would get sick of each other really quick, but that has not been the case. It does help to have the two older girls gone to school for a few hours each day, and the twins and Abby gone to preschool two days a week. I don't think I mentioned this before, but the preschool "All About Kids" has been awesome to work with MaeLynn and her family in this crisis. This preschool has the kids come for almost the whole day, two days a week. They feed them, make them take NAPS (hallelujah!), etc.. It's just what the doctor ordered.
And...now that Andy's home, sometimes the two of them just get to relax and be together. MaeLynn says it almost feels like they're on a date when all the kids are out. She said it really relieves some anxiety to have him home.
Her pain was increasing, but with the increased pain medication, she seems to be doing tolerably pain-wise. Her tumors are really growing, and while she is very thin, her abdomen is not-so-very-thin. She feels bloated a lot of the time as her endocrine system is not working up to par.
On a happier note, this last week she got to fly in a small airplane with her two oldest girls. Kendall, who will be 8 in July, has always wanted to fly in a plane. MaeLynn mentioned this to a friend, and he hooked her up with a flight with Kendall and Ellie (6). The girls were petrified and so excited. It was definitely a trip to remember! Kendall's dream come true.
MaeLynn also got to visit with her cousins and aunts from her Mother's side (my cousins and aunts, too) this last Saturday at a "Cousin's Lunch". She even had two cousins fly in from out of state...one from WA, and the other from CA. It was a fun day, but tiring. She hurried home Saturday night to a clean house and sobbing children. I asked one of the twins if his mom had left him for one whole day. "Uh-huh!!!" he whimpered. "Was it just terrible?" "Uh-huh!!" Drama, drama.
It didn't ease Mae's mind much, but I'm sure they had a great time.
One last cute thing: The other day, Triston wrapped his arms around MaeLynn's neck and said, "Mama? You goin' be dead?" "Yes, I am." Then with that sweet little face he said, "We will miss you." The same thought that I'm sure is in everyone's minds.
Her trip to Vegas with her biological family was a lot of fun. She was really tired when she got home, but was glad she went.
Having Andrew home with her all the time has been beyond wonderful. She really loves having him there, and he lasted three whole days before he needed a short break! They'll just keep working on building up his stamina :). He's been a huge help to MaeLynn. She says he's always there at her beck and call. He helps the kids. He disciplines the kids...(he's not the softy that Mae is :) But they LOVE having him there.
She was a little worried that they would get sick of each other really quick, but that has not been the case. It does help to have the two older girls gone to school for a few hours each day, and the twins and Abby gone to preschool two days a week. I don't think I mentioned this before, but the preschool "All About Kids" has been awesome to work with MaeLynn and her family in this crisis. This preschool has the kids come for almost the whole day, two days a week. They feed them, make them take NAPS (hallelujah!), etc.. It's just what the doctor ordered.
And...now that Andy's home, sometimes the two of them just get to relax and be together. MaeLynn says it almost feels like they're on a date when all the kids are out. She said it really relieves some anxiety to have him home.
Her pain was increasing, but with the increased pain medication, she seems to be doing tolerably pain-wise. Her tumors are really growing, and while she is very thin, her abdomen is not-so-very-thin. She feels bloated a lot of the time as her endocrine system is not working up to par.
On a happier note, this last week she got to fly in a small airplane with her two oldest girls. Kendall, who will be 8 in July, has always wanted to fly in a plane. MaeLynn mentioned this to a friend, and he hooked her up with a flight with Kendall and Ellie (6). The girls were petrified and so excited. It was definitely a trip to remember! Kendall's dream come true.
MaeLynn also got to visit with her cousins and aunts from her Mother's side (my cousins and aunts, too) this last Saturday at a "Cousin's Lunch". She even had two cousins fly in from out of state...one from WA, and the other from CA. It was a fun day, but tiring. She hurried home Saturday night to a clean house and sobbing children. I asked one of the twins if his mom had left him for one whole day. "Uh-huh!!!" he whimpered. "Was it just terrible?" "Uh-huh!!" Drama, drama.
It didn't ease Mae's mind much, but I'm sure they had a great time.
One last cute thing: The other day, Triston wrapped his arms around MaeLynn's neck and said, "Mama? You goin' be dead?" "Yes, I am." Then with that sweet little face he said, "We will miss you." The same thought that I'm sure is in everyone's minds.
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