Friday, December 26, 2008

ginger's first christmas

Our Christmas has been lovely. The snow won't quite dumping, making Christmas seem so real and right here. The world really does seem calm and bright wrapped in a fluffy white blanket.

Ginger loves the snow, but we do not appreciate the boots she drags in.

After all the presents were opened and played with, and the Christmas party was over, Sam said, "I wish it went: Saturday. Sunday, Christmas,.....Saturday, Sunday, Christmas..."

Sunday, December 7, 2008

things just work out after all

Things have been good lately.

One year ago I was saying to myself "one year ago I was so happy, so healthy, so busy....etc." I couldn't believe how different things were. Heck, last fall I had a disgusting tube sticking out of my leg draining disgusting fluid-I think for six weeks. So gross! And then a month of a tube in my arm. No baths. Even grosser!

Now I'm saying, "one year ago I was so depressed, so sick, there was nothing but hospital visits on my calendar...etc." I cant believe how different things are today.

I am in a way better place.

I went back to the hospital last month for a routine exam. I think I would have been fine if it wasn't snowing. That's what it did I swear every day I traveled to Salt Lake last December. It played tricks on my mind that I was about to get sick and tired. I pretty much had a panic attack while in the waiting room, and came home and slept all afternoon. Just like last year.

My Dr. said to take 2 ativan when I come in for my next scheduled scans in February. Thank you, I think I will.

So here is a small video I made for my family film festival. I did it in a rush and couldn't find a lot of my footage from the year (like Luke's 3rd birthday where he was incredibly adorable), but anyway this songs always tops the most played on my ipod. LOVE it!


Sunday, November 2, 2008

halloween pics


Luke, Chewbacca, Darth Maul, Obi Wan, and a firefighter.


James took his costume a little too seriously.

Why did he have to be a firefighter when we had such a cute theme going on?


Sams robe I made from $1 a yard fabric, sewn the night before (something my mom was always doing)


The force is strong in these boys.



Me as a ghost. I was getting bored waiting for the trick or treaters. It was dark so I had time to click the picture, run into the frame, and hold for a couple of seconds.


This is going to be creepy when I'm dead next year and really haunting my house. Oh check out my fat cat who was the perfect prop all night.

Saturday, October 25, 2008

what hurts the most, is being so close...,

Just thought I would let everyone know I'm doing fine. Life is treating me very well.

I am just the right amount of busy to have time to exercise, make my family dinner, take a bath at night, and read books recommended by my sister (who has 4 kids 6 and under and still makes time to read).

I don't feel like I have all the energy I had a year ago, but I'm getting used to the idea I may just never have it. I've actually just been diagnosed with Hashimoto's (sounds worse than it is). This is a very common side effect of interferon, its an autoimmune disease where you attack your own thyroid. I started medication for it this week and hope it helps some of my symptoms.

Lots of people ask about our house, which we took off the market. I am very sad about how it all went down, but basically we had no offers even after lowering the price. The housing market slowed way down, and.....

I guess there will be another old house someday. But I really loved this one. It felt so right. We had a connection. We had chemistry. I was planning my life around it. I had the colors of its 100 year birthday party picked out. I'm so confused-what happened?

Its been a lot like breaking up. All the country songs apply.

Well, I hope my metabolism kicks back up here in a bit and I get around to blogging more. It just seems like at the end of the day (and in the middle of the day, and in the morning) I just want to sleep .

Saturday, September 20, 2008

withdrawl

Did anyone see that study they came out with this summer that looking at your smiling baby is much like getting a high from cocaine? The smile activates the same pleasure receptors in the brain as one would get from recreational drugs. What?!

No wonder its hard for moms to send their babies to school in the fall.

I cant believe Sam is in kindergarten. Just as weird is the fact that I have a second grader. While they are enjoying school, I'm left home to wonder....where does the time go? What happened to my little baby boys?

It doesn't help that I signed Luke up for preschool. I have always done a neighborhood preschool where we trade teaching days, but this year I dropped him off with his backpack to a roomful of other little three year olds. Its just 2 hours twice a week, and I only did it to force myself to exercise (the preschool is at our rec center) but its hard to be away from all my kids. Apparently because Im addicted.

Heading down to Maceys yesterday for the case lot sale, I turned my rear view mirror so I could see Luke behind me. He was falling asleep, and at the same time picking his nose. Both nostrils.
Has to be better than crack doesn't it?

Tuesday, September 16, 2008

really needing my laptop

Your right Jennie, I do need a new post. My laptop broke and so Ive only had the internet for a few short minutes a day. I am sorry I left on a sorry note for such a long time.

We are doing well here, and I will post as soon as I get my laptop back. Things are looking up all the time, and the weather has been awesome in Utah which always helps.

Saturday, August 30, 2008

wreck

Today is the big anniversary.

One year ago today I was running around Salt Lake getting our passports for our Christmas in Chile. Driving around wearing capris and shoes with heels. Long curly hair and lots of hope.

Thats when the diagnosis hit me. On I-15. In my minivan, while talking on a cell phone.

I remember reading in one persons cancer experience that they had never been happy since the day they were diagnosed. I was so mad when I read it. Surely that could not be the case, and it was their own fault if they felt like that. I thought they should be happier than ever! Just to be alive, wasn't that good enough?

I'm sorry to say I see what she was saying.

I have learned a lot this year. I don't think I wanted to know half of it. I didn't want to know about depression. I didn't want to know about anxiety. I didn't want to know about suicidal thoughts. I didnt want to know the worst in me.

I liked being naive. I think I had enough trials to get me on my best behavior and in my scriptures. I was progressing. I was contributing to society. I was loving my neighbors. I was raising a family in the gospel.

I wasnt doing these things perfectly, but I really was trying. And I was happy.

I know people have had to go through hell like this when they were kids or teens. That breaks my heart. I think I would have been fine to wait 30 more years for this to hit me.

I guess Im feeling like I failed this test. God gave it to me, and I should have been prepared, and I should have come out with flying colors. But I fell short. I dont feel like I can ever have that pre cancer happy smile again. Like there will always be pain in the back of my eyes.

I wonder if this would be a different experience if I had no lasting side effects. If I wasnt limited by my leg, or if my prognosis was better. would I be like, 'Man that was a bad year. Sure glad that part of my life it over. Sure glad I learned those lessons.'

Instead I feel like a truck ran over me, and I feel...flattened. I dont feel like Im a better mom, a better friend, a better neighbor, and better wife, a better mormon. I feel like I'm a worse all of these.

Can something just kind of ruin a bit of you that you never really recover? Or do we always have to be the better for it?

Here is the truth: I am a cancer surviver, but I'm just surviving. I'm not thriving.

What do you think? Is there still a chance at heaven for me, or should I give up and go get drunk?

Wednesday, August 6, 2008

bitter sweet

My scans came back clean today. Cancer free. The spots on liver they have been watching are just cysts.

Sweet.

I came home to find out that my cousins husband (same age as me) passed away today. He had been courageously battling cancer for years. I am happy for him the fight is over, but very sad for my cousin.

Bitter.

Thursday, July 31, 2008

dog days


These weeks are flying by, even though the days seem slow in the August heat.

I have been feeling so good lately. I didn't realize how awful I felt. I spend about 5 more hours a day awake or at least out of bed than I did a month ago. Its like I'm a totally different person.

I'm even in love with my dog.

She still pees on the floor when she sees anyone, bites holes in the kids shirts, and chews only the boys favorite toys.

But she chases the boys while they call for her and run deliriously down the halls in the hot afternoons. She stays right by their bikes as we ride down to the river to cool off. She follows them into the water and comes out just to shake her hair off on me. She found bubble gum the other day and we laughed till our bellies hurt watching her try to chew it down. She tries all day to make friends with our cat-the cat who picks fights with the great dane across the street.

She also barks every time I hiccup. Whats not to love?

Josh is also a different person. I think he was a little overwhelmed being the dad and the mom and my therapist. Now when he wakes up to pancakes, sausage, and a wife who has already showered and put her make up on by 7 am he looks at me like 'where have you been?' He suddenly has no dishes, laundry, cooking, or cleaning up to do.

Wives are like magic aren't they?

I actually think hes happy for incredibly unselfish reasons. He doesn't like to see me sick.

In other news....my parents have returned home in an unexpected (for me at least) change of assignment (they have been in Chile for a year). We are very happy to have them back and have been spending some time with them.

I will have PET scan results this Wed. afternoon. I think they will be fine or someone would have called me by now.

My house is not selling. We have had lookers but no offers. We don't dare have two mortgage payments in this market, and our contract expires in a couple weeks.

But that dang old house on Center Street haunts me every night.

Thursday, July 17, 2008

what the dr. ordered

Long, boring, and poorly written. But this explains my behavior:

When I met with the oncologist for the first time after my surgeries to discuss interferon (the medicine Ive been taking) they were like, "Just do as much of the year that you can. Its a rough treatment. We know the first month is the most important, and then see what you can do after that." And I was all what are they thinking, that I wont make it a year? Impossible. That I wouldn't do whatever it takes for however long to save my life? Ridiculous. That I'm not going to fight to the end? Insulting.

They saw right through the newly-diagnosed-cancer-patient strait to the me 8 months later who came stumbling into the office, emotional, tired, confused, and asking "how much of this can I take?"

The fatigue had been getting worse and worse. Long naps. No energy. Sleeping way late. Luke, who has been pulling me out of bed, has added to his morning routine getting me a Mountain Dew from the pantry to wake me up (I never touched the stuff before, but I seriously had to wait to kick in to get out of bed.) They are sick of their 'meth mom' as I like to call it. I was like some zombie, and sure the cancer had come back because I had gotten so much worse in the last month.

Well the Dr.s were just like, "this is what happens, you made it longer than most people do, they just get to a point where you cant handle it, and we take you off."

A few random facts about interferon:

*It only helps about 10% of those who take it, although they think it does give you more time before (and of course if) the cancer comes back

*They are studying right now the effectiveness of a years worth of treatment. They do know that the first month helps, and that without the first month (of daily IV treatments) there is not a benefit. Basically, one of my nurses was like, "it wouldn't seem right to be sick for 4 more months to get one more month of life."

*What its doing is making my immune system work harder to get rid of the cancer (melanoma your body recognizes as foreign and will try and fight off. From what I understand this is not the case with most cancers?)

*Its also made me that psych patient they wrote me prescriptions for and laughed in their face. Now its like, "No Alisa. We cant triple your ativan."

*I hate this drug and wouldn't inject it in a rat I disliked. Even if he had cancer.

So the oncologists are all, "You need to take a month off. We can decide if you want to start back in a month with a lower dose. You don't need to get back on it, we don't know for sure its even helping that much."

I was shocked. Mostly because I started talking like those other I people I read about who went through cancer treatments. "So I could be done? What would I do then? You dont understand, I have a house keeper right now. Also an excuse for everything. No one expects anything out of me. Its what Im used to now, I don't know if I'm ready to get back to normal. etc."

As I was talking to her I was falling asleep (being my normal nap time). Shes like, "your getting off the treatments, (but not your psych meds) and I'm calling a taxi to take you home."

I also saw my surgeon for my mole checks, and he agreed. He said as much as they care about my life, I also need to live it. He says don't go back on, you've done a great job, etc. Dont feel guilty about stopping, we don't know how effective it is long term. And your moles look fine.

So Ive been off for a week.

I wake up 3 hours earlier. I don't take naps. I don't even take ativan. I haven't had caffeine all day. Im stuffing my face. Cleaning the house. Making breakfast. Walking the dog. I'm on top of my laundry right now.

Its so nice to know that under those drugs is just....me. I'm still here.

Although the energy is not back to pre cancer (they say a month of recovery), I don't think Ill use it all when it returns. I want to keep some for myself.

I kind of think this why women can only be pregnant for 9 months, its just all you take of feeling like crap (Ill insert here that I have been pregnant for 9 and 1/2 months and the last two weeks were BAD). You do get a new baby at the end of that, but Im looking at it as giving life to myself (or I guess a 10% chance).

So anyway, they want me to have another scan beginning of August. And I am probably done with cancer treatments.

Now what?





Sunday, July 6, 2008

turning pages

My sister is having a baby this week, and as mine just turned three, I'm giving her the furniture in my nursery.

Its always been a favorite room in the house. Not because of the rug which is one of my best finds ever, or the changing table Josh and I made from a desk top, or the perfect blue/green paint color we ended up with after several coats, or the view of the rocky garden steps that are literaly a few feet away. Like you could at anytime open the window and pick some fresh peas or pansies if you had the inkling.

I love the room best because my babies slept there. And woke up there. And made me so happy there.

Josh disassembled the crib, screws, bolts, springs. It was like pushing rewind on the day he set it up.

When he was done, I laid in the empty spot and bawled my eyes out.

After a thunderstorm rolled by and I had a good cry, I asked Josh to help me carry out my hope chest to the garden......for a bonfire.

He refused without laughing.



Luke in the perfect light next to the window. I used to wake up and hurry into his room saying "good morning gorgeous!" This was one of his first complete sentences, and he started daily complimenting ME when I walked in in my pjs and morning hair with "good morning gorgeous!"


p.s. I also bawled today when the gorgeous Roger Federer lost at Wimbeldon. I think I'm just generally overreacting.

Friday, July 4, 2008

the american dream. or nightmare.

I have it all.

A husband.
A house.
A white picket fence.
Three kids.
A dog.
A cat.
A minivan.
Cute big sunglasses.
The gospel.
One of the most deadly forms of cancer.


Luke gets patriotic at the rodeo


me and james and the man who rides his tricycle around Lehi
at the parade


freckles and a flag

Sunday, June 29, 2008

prayer

Its been a bit of a sad week. My moms neighbor and my friend lost her full term baby.

As I'm not handling swollen toes too well, this is just devastating.

I have always known throughout this cancer that although my pain is big, its on a whole different level than someone who has had something happen to their kids.

Because I know how crazy a moms love is, she would do anything to save her child. Usually you don't have that choice though, do you?

I'm so glad I believe that Cali will get to be with her sweet baby someday, and that she will get to be his mom forever.

May God bless you, Cali and Josh.

http://www.babymckallister.blogspot.com/

Tuesday, June 24, 2008

fine!

Today I had one major goal. Talk with the librarian about my crazy fines and try to get them waived.

My sister says library fines directly correlate with how much stress your feeling.

Lets just say its been a stressful year. I also was never good at getting things back on time in the first place, then you add my brain fog. Its bad. I have paid at least $40 every time I go.

Last time I waited in line filling pretty sick (from the drugs and the unknown number). But when she told me $80 I stared at her in disbelief. I debated for a minute whether or not to tell her my perfectly good reasons for bringing my movies back so late. The line behind me was long, and I started to get chocked up at the thought of my story.

Tears were falling down my cheeks. I knew I wouldn't have a voice.

I slowly reached in my purse and pulled out four $20 bills. I wiped my nose with my hoodie sleeve as I handed her the money.

"Thanks. Have a good day." She said with no emotion.

What?! She looked me strait in the eye while my lips were quivering and mascara running down my face! Did she seriously just take that money without so much as look of sympathy?

I remember a time, probably in the 80s, but definitely before all this seat belt craze, that my mom was pulled over for speeding (very unlike my mom) on the long way home from grandmas house. She totally bawled and got off with just a warning.

I should have chosen the man librarian.

Well, he wasn't there today.

But I had every intention of pulling the cancer card out with my library card. So I pick the librarian with the uniform, short hair. Could be a recent cancer surviver? We may have something major in common and this conversation may end up in an eternal friendship, or at the very least a warm hug. Or is just that she looks dang cute with short hair?

There is no one in line, so I step up to the plate. I start out in this once upon a time fashion that I feel like a librarian is sure to identify with. As I get deeper and deeper into the story she is looking more and more bored. She stops me short with "okay, whats your name."

Oh no, I thought, this is not going well.

"Linton. L-I-N-T-O-N. Alisa A-L-I-S-A."

"Do you have your library card with you?"

I lit up, "Oh, of course." I whipped out (from my official organized-person-looking Lehi Library bag) the card I had had replaced last time I was at the library (another $5).

She scans it in and spends some time looking over the report. "yes, you do have $42 in fines....some movies.....books........"

"Well I have turned them all back in good condition. I take good care of them, its just that I'm SO irresponsible right now...."

At this her eyes shoot up and she gives me a stern look. She said something to the effect of 'thats exactly why we don't know if you should be checking out our materials..' kind of thing and I got panicky.

I started to kind of try to laugh it off, "Oh, its just chemo brain you know. Once I'm off this medicine Ill be back every week, you watch...."

Now I could tell she was questioning the validity of my statements.

Well as luck would have it, my neighbors little kids were walking by just at that moment. I looked around for Julia (little did I know she had her baby while I was at girls camp) and found someone who looked very similar herding the kids.

"Hi! You must be Julia's mom!"

"Oh, yes. And your name is.."

"Alisa."

I waited for maybe that to ring a bell and for her to tell me how she remembers Julia's friend with cancer and how she's so sorry.

Nothing. Of course shes never heard of me.

I say very loudly anyway "I'm her friend with CANCER."

"Oh, I'll tell her you said hi." She smiled politely and walked away.

By now there is a long line behind me and I'm getting very uncomfortable. I'm totally acting like this is all a lie.

In an awkward voice I continue "Don't you have like a program that other libraries are doing where if you read like an hour in the library you get $8 off your fine or something?"

Now shes really looking at me strange. This even makes her laugh. "No."

I talk faster..."Well, its not really the money I mind paying, its the principle of the thing you know. I pay $15 for an overdue DVD, well I might as well have gone to barnes and nobles and kept it. I could get the books new there, at least, without having to worry about bringing them back anywhere....I mean, Ive paid like $200 of fines here this year alone! Its just so hard......"

She consults the computer again "That's true.....You have returned them all......." (but I could tell she was thinking, but your act and your story is ridiculous).

She decides to cut my fine in half.

I leave with my head down hoping no one in that line is reading my blog and realizing how pathetic and lame I really am.

I came home and turned the ringer off my phone.

The phone has been lost ever since.

If you need to reach me, follow my library fine trail.

Sunday, June 22, 2008

side effects.

So, I found this chart in all of my cancer drug material I went through to find out what the heck is wrong with me lately. The chart is over one year, and I am at 7 months. No wonder I'm going crazy. (Note the pink and dark orange lines).

I think Ive hit the peak of the side effects. I better be or I don't know if I can make it to November.

Im having major anxiety problems, and feeling so hopeless. It also seems like the fatigue is getting worse every day.

Maybe its the fact that Ive gotten my house on the market in one weekend, and am keeping it semi-clean daily (VERY hard for me). Or the fact that I was cooking at girls camp for a week, with very little sleep (by my current standards). Could be that my leg is swollen something awful in the heat. It may have something to do with no one putting an offer on our house (although josh says it will happen this week).

Its most likely this stupid (but cute) puppy thats been peeing on my floor.


Ginger. You bet I got a twinkle in my eye when I thought maybe there was another curse word I could use around the house without really swearing
Our marriage has lasted 8 years, 3 kids, 3 moves, building a house, cancer, cancer treatments, but I dont know if it can survive this puppy.

I would use the line 'either the puppy goes or I go,' but I'm pretty sure he would pack my bags.


Monday, June 16, 2008

from da potty

I walk in my front door today after grabbing something from my neighbors' house. All was quiet.

"Luke!! What are you doing?"

A raspy voice answers. "Im goin poo. Is dat a good idea mommy?"

"Well yes, it is."

A few sounds later..."ha, ha, mommy did you hear dat tootie-toot-tootie?"

"Lovely."

"UHHHH, GRRRRR, MMMMMM. Mommy was dat loud?"

"Very."

More grunts.

"Oh, mommy! What dat smell?"

"Probley your poop."

"Oh."

"Ready to be wiped?"

"I got two big ones, wait THREE! Brown with white!"

Why dont two year olds act like the rest of us and want to be private? Anyone else having these daily conversations?

Sunday, June 15, 2008

the long version

I know, I know, I need to blog.

I feel like there is so much more to say, and a better way to say it, but I'm tired so here goes....

Ive been having some rough weeks, to be honest. I hesitate writing the bad, but thats just how it is sometimes.

It all started the night David Archuletta lost (SHOCKING). My grandpa died (SAD). I ran out of antidepressants for few days (BAD). My best friend had a baby (JEALOUS). I fell in love with a house, but they had already accepted an offer (DEVASTATING). My lymphedema spread to my toes which means no more normal shoes and lots of discomfort (DAM IT).

So in the middle of all this......there are two houses in Lehi I drive by and always say 'if that house goes up for sale I'm buying it.' One is the red brick two story on the north side of Wines park (if you live in Lehi, you know which one it is). The other is a prairie bungalow. Every window is Frank Lloyd Wright-ish looking stained glass.

It goes up for sale. Its meant to be, right?

It is has tons of original built-ins and wood floors. They have redone the wiring and plumbing and kitchen. It has kitchen garden, a sleeping porch, and is on a third of an acre.

Its not even that....its just I felt awakened in the house. I felt like LIVING there. Every image in my head when I think about my house is me, alive.

when I walked through it I did everything they tell you not to. "Oh....I love it! Cute! Its my dream house! I love everything about this house! etc." I drive by every day, stare at it when my kids are at the park, paint the walls in my head. I swear I see my unborn children in those windows.

Its been emotional, but two offers have failed in front of us, and we are in contract. It is conditional on selling our house, and so far, no offers. We dropped the price 10,000 this week and had no one call since. Its not looking good.

Everyone says if its meant to be things will work out.

Guess I'm meant to die and have to haunt these linoleum floors and stucco walls.

Thursday, June 5, 2008

the short version

I wish I had the time and energy to tell you why there is a for sale sign in my front yard. Basically, there is a gorgeous 1921 bungalo in Lehi that wants me to live in it.

So, Im trying to get there.

I love my neighborhood something feirce, but theres a change in the wind for us, and I think it will be good.

I think it will save my life.

Sunday, May 25, 2008

goodbyes

Thank you uncle Brad, aunt Kathy, and aunt Janice for this wonderful tribute:

Vere Hodges Johnson was born on August 30, 1921 to Alphalus Ariel Johnson and
Blanche Jesse Hodges Johnson in Beaver Dam, Utah. Vere had what he described as the perfect childhood, surrounded by a large extended family. He graduated from Bear River High School in 1939, Utah State University in 1944, and Western Reserve University Dental School in Cleveland, Ohio in 1948. He served two full-time missions for the Church of Jesus Christ of Latter-Day Saints; first as a young man in the North Central States Mission (1942-43) and later with his wife in the Frankfurt, Germany Mission (1985-86). He was an active member of the church all of his life. Vere preached the gospel and lived its precepts faithfully. He married Winifred Amacher in the Logan Temple December 19, 1947. They were married 56 years when she passed away in March of 2004. They were the parents of eight children. Family was all important to them. Vere worked hard at his dental practice. He practiced dentistry in Roosevelt, UT; throughout Florida; and Logan for 35 years. His home was a secure place where all were well fed and entertained by his quick wit. Learning and education were not only encouraged but financially supported. He had many interests. He loved the gospel, people, Beaver Dam, family history work, his grandchildren’s sporting events, good deals, buffets, building projects. Arabian horses, computers, but most of all his family. He valued education, hard work, thrift, integrity, and stressed to the very end that “family is everything”. Grandpa’s large smile, big laugh, and constant joking were infectious and endearing to all who knew him. He had a nickname for everyone or a story he would tell to introduce his friends and family to others. His teasing indicated that one qualified as his friend. We’ve all been educated or enlightened by the wisdom which he freely gave. If it could be built, he wouldn’t buy it. If he had to buy it, he found the greatest deal in town, and the story of its acquisition became legendary. But we all know the acquisition of which he was most fond –his dear wife, and the family they built together. He was preceded in death by his wife Winifred, his parents, and his brothers Don and Thiel. He is survived by his children; Rand (Nancy) – Dripping Springs, TX, Janice Stauffer (John) – Bountiful, UT, Kathleen Thatcher (David) – Paradise, UT, Paul (Jill) – Santiago, Chile, Bradley (Rosemarie) – Enumclaw, WA, Todd, (Diane) – Annandale, NJ, Scott, (Melanie) – Snellville, GA, Robert (Mary) – Providence, UT; 55 grandchildren, and 46 great grandchildren; sisters Mae Zollinger and Renee Nielsen. The family would like to sincerely thank all the friends and family who cared so lovingly for Vere, especially the never tiring devotion of grandson, Kent Thatcher. Funeral Services will be held Friday, May 30, at 2:00 p.m. at the Providence 2nd & 3rd ward chapel, 309 South Main, Providence. Viewing will be held Thursday, May 29 at the Nelson Funeral Home, 162 East 400 North, Logan; and Friday at the Providence 2nd & 3rd ward chapel from 12:00 to 1:30 p.m. Interment, Beaver Dam Cemetery.

Yesterday, my grandpa Johnson died.

He took his last breath surrounded by his family that adores and admires him. It seems a good transition, going from the arms of those who love him here, to those who love him There.

I drove up to Logan when I heard the news.

He was in a lot of pain, and was ready to go Home. It was still hard to see my big grandpa lying there quiet and still.

I got to spend a day with grandpa a couple of weeks ago. He was sick, and humbly asked how I deal with all this going on in my life-the pain, the fear, the anxiety. He said he was inspired by the way I was carrying on. He said when he got to the other side, he would plead for mercy on my behalf. This touches me somewhere deep inside, and gives me strength and hope.

A light rain fell as we drove out of the valley. The sun was low in the west and scattered a misty glow on the fields, mountains, and trees. Ive never seen the world so perfectly lit.

Tuesday, May 20, 2008

i heart david archuletta

I hope he is a sweet as he seems, James and I are huge fans. I guess we find out tomorrow if our little Utah mormon wins. Go David A!!!

Its not like I dont have anything else to write about, I cant decide between all thats in my head. Hopefully Ill get some time this week.

Monday, May 12, 2008

this is my mothers day present

Yup, your looking at it. My mom said all she wanted for mothers day was for us to write a letter with every detail of our lives. She has broken her knee cap and is bed ridden in Chile and is very bored. Who would want to know my details? Of course mom does. But that would take forever, so here is one day. Yesterday. Mothers day.

At 8:45 Josh came in to wake me up. I hate 9:00 church. He had gotten the kids all ready for church. They actually looked good. Josh however had blue striped pants, teal and navy striped socks, white and blue striped shirt, and topped it off with a green and pink flower tie. "nice" I say. I had to smile as a small memory from the 80s crept up on me.

I had the perfect outfit. And it was Sunday (there is never anything to wear on Sunday). My mom had made me a knee length royal blue skirt. I had a white and blue striped button down collared shirt, white tights with blue stars all over them, and thick striped keds. How could this all come together so easily? All my blues were matching!! I still remember how proud I was walking in the chapel with everyones eyes on me.

I couldn't believe my mom let me out like that. Should I make Josh change? Na.

I chose for mothers day my favorite long white islet skirt with a ruffly white top and my favorite bright green sandals, and dangley earrings. Saturdays make up looked good enough (I put on extra that night cause I went out with some of my nursing friends).

Out the door, and late.

I might not have had Josh wake me up except I remembered the kids would be singing to me in sacrament, and as ridiculous as it was, I would be taking it personally. Luckily since we were late we got front row seats.

They only sang one song. James stared into my eyes sincerely and missed half of the words. He kept grabbing Sams face and forcing it in my direction to get him to sing to me. But Sam was watching sister Drake trying to get some of the words right.

After a great meeting I came to the conclusion that moms all agree on one thing: its worth it in the end. The valley of the shadow of death is nothing compared to a sweet little 6 month old reaching up for your cheeks. Sleepless nights are nothing compared to a two year old laying in the hammock telling you stories. Throw up and boogers don't stand a chance against kisses and hugs.

The hard times of motherhood get drowned by the happiness it brings.

Now I'm getting cheesy....sorry.

So after sacrament James said he felt sick, like he was going to throw up. As he now uses the argument "you don't know, cause your not me" and he has been known to throw up in primary, I decided to stop the fight before it started and take him home. I also think he knows I can tell if he has a sore throat (red tonsilles, swollen lymph nodes), a fever (over 99), a cough (fake ones are very obvious), but I cant clinically tell if he's nauseous.

I don't know because I'm not him, but I think he was okay. He immediately ate a full meal and proceeded to run around the house like he didn't even know how to act sick.

"James, how are you feeling?"
He puts his hand to his forehead, "Um, a little better than I did at church."
"Oh, good."

I never know what to do when my kids fake sick. I know that my mom let me do it all the time, let me stay home from school and lay in my bed. She even treated me like I was sick, when I know now she knew I wasn't.

Thanks, mom.

I decided to make the potatoes for dinner while Josh was gone. Even though he insisted on cooking, I knew it would be easier to do it myself than explain. I love this way of doing mashed potatoes, you fix them up then refridgerate until 40 or so minutes before dinner starts. It makes it easier to get the meat and potatoes done at the same time. The recipe goes something like:

potatoes peeled, cut, and boiled
drain and mash
add butter, cream cheese (maybe half a small package), and some sour cream
add garlic salt to taste
spread in 9x13 pan and sprinkle with paprika
cook at 350 until hot

These don't even need gravy, although gravy never hurt anything.

I cleaned up after myself and Josh and Luke came back from nursery. This is Josh's new calling, and he loves it. A few years ago he was the nursery leader and did an awesome job of. When he got released Bishop Pierson said he would always be the nursery leader in his eyes.

Luke made me this in his class. I love it.


He also showed me a piece of chocolate and ate it in one bite. I later found out was meant for me. I wouldn't have been that bugged, except for the big Symphony bar they gave all the mothers in our ward was devoured mostly by the kids.

Its sometimes hard to share chocolate.

Luke got on my lap and insisted that Jesus said he needs new underwear that arent owie. I changed his underware. He then told me Jesus said he needs different pants on. I change his pants. Jesus then told him what book I was to read him. How am I going to argue this one?

I talked to my mom for a while on the phone, wishing I could help her out.

After lunch we put Luke to bed and things got quite. James was working on some homework and as I got to the top of the stairs he asked "Mom, what kind of animal sleeps a lot?" "I don't know....a bear?" "Oh, thats a good one."

I peeked over his shoulder at his work. It was a 'family animal' poem. He had to fill in the blanks:

Dad is like a cheetah because he is fast
Sam is like a monkey because he is crazy
Luke is like a giraffe because he is tall
Mom is like a bear because she sleeps a lot.

I looked up at Josh all shocked and hurt. He shrugged his shoulders and said apologetically, "I tried to tell him to think of something skinny or pretty."

I went to my room all sad that my kids notice how much time I spend in bed. Then I fell asleep.

I woke up to the sounds of Josh in the kitchen. He made us grilled chicken, cut up fruit, and steamed broccoli. We had a nice dinner with his parents and brother. The weather was perfect. I spent some time in the hammock with the boys, then watched them golf.

They were ready for bed at 8, so I had time for a bath. I read a little of this and that. Josh massaged my leg while we talked. He gave me my pills, then a shot in the tummy.

So there you go mom, life is great here. Thats all you really want to know right?

Tuesday, April 29, 2008

scan results

Just wanted to let you know that the MRI of my liver came back uneventful. The spot, the Dr. said is "not acting malignant." They will rescan in 3 months to be triple sure. This had taken a big fat maybe out of my summer plans.

I thought today while I sat for an hour in the hospital, anxiously waiting for my results. So if they say its not cancer I will be thanking and praising God. What if it is? If a blessing we contribute to God, what about a curse? Is my love for Him conditional on my condition?

I haven't had much energy to think this through, I just decided that His hand in my life has been great so far, and what he chooses for me will all work out. This is especially easy to say after clean scans.

If Gods in all the details, what should I make of only 50% of my tulips blooming this year? I guess Hes with the Dr.s on this one.

Sunday, April 20, 2008

Chapter 1 Grandpa Johnson


among other things, my grandpa is drop dead gorgeous

I have had a couple rough nights this week after I found out my grandpa was put in the hospital. He is home now, recovering. I guess I cant help but think that at some point (hopefully not soon) he will succumb to the inevitable. It stings now maybe because when I loose him the pain of loosing my grandma will surface and double. He is not only a great man himself, but a link to my grandma. When I'm with him he is always reminding me of her great selfless life.

I'm very grateful that since my diagnosis grandpa will talk frankly about life, death, love and loss with me. No one else will hear me talk like that. I really appreciate it. We wondered together which of us would make it back to grandma first to send her the others love.

Grandpa said when we get there (heaven of course) nothing will matter but your family. You can try to please others but your family will be the ones that will be important to you in the end.
Grandpa your family will love you to the end. Your relationships with me means the world. You have always been kind, thoughtful, and dang funny!

When I blogged about reading other peoples stories with cancer, and feeling envious they had outlets for their anger I couldn't use, immediately I got an email from my grandpa (born and raised in Beaver Dam, a small town in Cache Valley). I copy it here so you get a taste of what a hilarious person he is.

Alisa,

I just read your blog about your jealousy of those who
can drink and swear. I don't think I can help you out
with the drinking but I surely can on the swearing.

In naming an article you needn't use two words but can
just use one. This is the case with the names of towns
also. With Beaver Dam, you can get buy just using the
latter word.

Instead of using the normal non swearing phrase of
gosh awful, I have freedom to use just Dam when it
comes to referring to my place of birth. I have
extended this principle to naming my place of birth
instead of beaver dam I feel very justified with just
using Dam.

Typically this right to edit the name of this town is
only for those living or born in Beaver Dam but the
privilegeof editing the name of this town has been
extended to you through the inheritance of your
grandfather.

We hope the use of this word will help give you the
feeling that you can selectively and emphatically
employ the words of your non member friends.

Sure love you and you are in my prayers continuously.

love Grandpa Johnson

I was in tears when I read it. I dont know if they were from laughing or from feeling that my grandpa loves me deeply. It was so thoughtful, and fulfilled a real need. I said through the tears "Thats the best Dam advice anyone has given me!" I've edited the towns name when nothing else can describe how I'm feeling. Thank you for the Dam gift grandpa!

I would love to hear some funny things grandpa has said to you, it seems like every time I'm with him there is something to laugh about.

Grandpa has lived a wonderful life. I know grandpa is a lot of things to a lot of people. People might know him as a great dentist, a true friend, a smart businessman, a great horseman, a funny uncle, a faithful saint. The list would of course go on. But to me he is my beloved grandpa.
I love you grandpa "right past outer space" (as Sam would say) .

The pain of death and sickness is deep, but love is deeper, stronger, and permanent.

Thursday, April 10, 2008

what not to name your dog

Wow, its been a crazy couple weeks. My parents have been in town and its forced me to leave the house. Now I'm tired and my pea seeds in the ground, so I wont be doing much for a few days.

I am feeling good lately though. My biggest complaint is that I feel really stupid and slow. I'm hoping this 'brain fog' as they call it isn't going to be permanent.

Yesterday Sam told me, "Mom, your famous for forgetting things." Great.

I have had a hard time with with my moms' dogs' name, Babe (we have her for another month) . Since this is what Josh and I call each other, its made for a few awkward moments. Like I said, Im a little slow, so I get very offended when I hear Josh say things like:

"Babe, get off of my bed!!" or "I hate your hair Babe!" or "Get away from me, Babe." "Sit Babe." "Babe, stay in the kitchen." "You smell bad Babe, time for a bath."

Luke hugs Babe (and yes, thats a booger by his nose, artificially colored food on his chin, and a black eye).

Wednesday, March 26, 2008

the results.

They think everything looks good. There is one spot on my liver that has grown a little. Although they don't think its melanoma, they want to make sure so I will get an MRI in a month to see if it has changed.

I took it all as really good news. I hope this is what I hear every 6 months.

Tuesday, March 25, 2008

i draw the line at the easter bunny

Come on, a big fluffy bunny hiding eggs you yourself dyed the day before? What are the odds? Ill let my kids decide on Santa, but the elusive rabbit will get no plugs from me. I think someones just trying to sell their peanut butter cups.

Its working, Ive eaten a whole bag in two days.

We had a lovely Easter weekend. Just bumming around soaking up sunshine.

Monday I had my 6 months scan. The radiology tech asked what I was "in for." When I said melanoma he gave my sunburned face a disappointing look. It was cold! We weren't thinking about sun block.

I get the results tomorrow. I think they will say everything is fine and the cancer is not back. But since I cant be sure Ive been studying up on my stage IV melanoma options. They are not so good.

But there is a cure, so I'm not scared. Jesus has already cured my cancer, and yours. I just wish you didn't have to die first.

I will be better. I'm glad I know this.
Luke's first egg of the hunt.

Friday, March 21, 2008

no comment

Last night I wondered with Josh over the fact that I only had one or two comments on my last few posts. I thought everyone was sick of hearing about my cancer. Even my faithful commenters (Jennie, Buffy, Kathy, my mom) weren't saying a thing to me. Not that I blog for the comments, or think you should have to comment, I guess was just getting used to you all cheering for me (and if you have read A New Earth you will be screaming "EGO!").

Well I found a bunch of comments in my spam. It was a relief. I also broke down and listened to the 92 messages on my home phone.

Here are a few pictures taken before the haircut. It took 50 shots to get a few good ones. I will take some after shots as soon as my massive cold sore is gone.



A shamelessly touched up picture.


All that pretty brown hair!




Happy me.


My favorite picture of the night, when Luke got out of bed .


Possible obituary picture?

Sunday, March 16, 2008

good

Sorry I left my blog on a bad note for such a long time. It seems I'm using this to vent, which makes it awful to read. I need to share my good emotions because they far outweigh the bad.

This past week I:

-Repented.

-Got released from my young womens calling. I'm going to miss those girls like crazy. It was a sad day.

-Cut my hair. All the research says the hair wont fall out completely like with chemo, just thin a lot. It feels thicker now that its short. I'm happy with it.

-Bought tickets to see my sister in Ohio and left the next day. This is where I sit right now. I love the Midwest. Its pretty even in March.

-Shopped at a Cincinnati Gap clearance center. Averaged $3 and item. Most fun Ive had in a long time.

-Started reading three different books: A New Earth (very interesting and humbling. lots of truth, some error.), Alice in Wonderland (not sure about this one yet, it seems so silly.), and the Analects by Confucius (Im interested in this guy after reading A New Earth).

This week will take me home. I love it there.

Friday, March 7, 2008

evil

Lately Ive been feeling like I'm going to have a long life after all. God wouldn't possibly take me away now as imperfect as Ive been acting the last few days.

Ive been (among other things).......

Frustrated. At the two year old. Oh, hes not having accidents. Quite the opposite. He pees every 15 minutes. The first day it was songs and smiles and high fives. But today I growl at him every time he goes.

He has been in his room throwing tantrums all involving the Lucky Charms that I bought in a moment of weakness. He gets everything he wants. If its not his toy I make who ever it is share it with him (often making up a scriptural reference about sharing with your brothers). If its his toy, he gets it cause its his.

He does have these gorgeous brown eyes though, and sweet little voice. Also a really loud cry. I sometimes look at him and think 'I have literally created a monster.'

Even now I'm blaming his bad behavior on my parenting skills. Nice.

Vain. Although I shouldn't care, there is something very humiliating about loosing my hair. Every handful I pull out reminds me I'm just not normal. And also that I am just a normal cancer patient.

Angry. I don't know exactly at what , but I know at who. How can you stand me Josh? He even sent me tulips and when I read the attached card ('I love you') I thought 'is that all you can say to your dying wife?' Evil!!

Lazy. Since my last post I have not accomplished one thing. Maybe Ive vacuumed, but only because the lucky charms were spilled and my thinning hair was getting stuck to my feet (yuck).

Unfaithful. To a very dear relationship Ive maintained all my life. I have lost my passion for food! Love songs have a new meaning and make me cry. Pathetic!!

Jealous. Of everyones legs. Of everyones health. Of everyones hair. Of everyone who lives in California. Of everyone thats pregnant (especially with a girl).

Damnable. For not only having all these feelings, but having them all in the same hour. Look, I know there is a sweet girl somewhere inside me, but shes having a heck of time showing her face. I just need more time to rid myself of this 'natural man.'

As I lay on my bed fuming today Sam wondered what I was doing. "Just securing my place on earth, Sam." I don't want to be too angelic or Id fit right in to places I'm not ready to go.

Thursday, February 28, 2008

carpe diem in context, and a book of people

I think I speak for everyone in Utah when I praise the the Lord right here and now for all this beautiful, warm sunshine!!

It gives me energy. I need it this week as Josh has been gone since Sunday for work. Last time he left me alone I lost it. Today (after 5 days of him being away, but with help from my mother in law) I cleaned all the treasures that have been buried in the snowy backyard, went walking with my neighbor, weeded my flower beds, finished the laundry, cleaned the house, potty trained my 2 year old (yea Luke!), shopped at Target for bribes, visited with my cousin (thanks Jill), took the boys bowling, got them fed and in bed by 7, watched American Idle (can someone fill me in on what the connection is between David and Alexandrea? Cause he was bawling), brushed the animals, read my scriptures, and now I blog.

It occurs to me that if I can get that much done I better start checking off my list (of things to do before I die, see my September blog, crazy eights). Not that I'm going to die, but I want to get those things done so I can start another list.

Heres the thing: I could do laundry and sweep my house and cook and clean and watch TV all day. Really, I could. There isn't time or energy for anything on that list. I keep thinking all these dreams of the future will just happen when I'm not chasing around little kids.

Luckily, I'm learning a lot about living in the present. Not that the past isn't great. Not that the future shouldn't be anticipated. But you can get caught up in what things were, or what they might be. What about now. How about today? How great is this moment? Your stomach is full, your legs are resting, the sun is streaming in your window. You feel great now. It doesn't matter that tumors might be ravishing your body. Let them come, and enjoy things about those days too. Things like sleep, and medications. It doesn't matter that your extremities are blowing up. Let them grow, and enjoy the fact that they are there. Your kids are the only ones that notice it now. It doesnt matter that your hair is falling out. Its just what you look like, not who you are.

I bet most of our unhappy days (for sure not all, cause some days are just plain sad) are due to anxiety about the past and future. All that time you could have been soaking in the pleasures of the day. And you could have felt the joy of being alive and healthy.

No, but I'm trying to say is that life is too short to wait around to get things done you want to do. If you want to have friends, invite someone over. If you want to paint, take a class. If you want to run a marathon, get registered and start training. If you want to be a nice person, act like it. If you want to be happy, do something simple to make yourself that way. Dont be stupid about it of course. If you don't have the money to get to Paris-save up for it today. There is always something you can do about it today.

If you want to write a book, start your chapter.

This is where I find myself. Although I don't want to write a book, I need to do something about all the amazing people in my life. Before I die I want to tell them I love them. So in 2008 I am going to share my love for them.....with you.

So at least once a week Ill add a chapter (to a 'book' that will never be published) and honor someone Ive been thinking about. I cant write very much or the posts will end up long and unread, much like todays. So Ill pick something small thats touched me and changed me big. It might be boring, but its my blog, and I wont be offended if you skip over these chapters. But who knows? Maybe you could learn something from them.

Wow! Long, muddled, obnoxious post. Sorry.


dont ask-it is forbidden to know
what end the gods will give me or you. Don't play with Babylonian
fortune-telling either. Better just deal with whatever comes your way.
Whether you'll see several more winters or whether the last one
Jupiter gives you is the one even now pelting the rocks on the shore with the waves
of the sea — be smart, strain your wine. Scale back your long hopes
to a short period. Even as we speak, envious time
is running away from us. Seize the day, trusting little in the future.
-Horace

Thursday, February 21, 2008

'the resurrection of departed pride....'

Just wanted to give a quick update since some get anxious when I don't. To please those in that category (which, oddly enough, includes me).....

I started up my shots again last week. I feel as tired as I did before, but not sad and hopeless. Thank goodness!!

I have only enough energy to take care of my kids, take a walk, and do a little housework. Most everything else Ive dropped out of for a while. For example, I have like 50 messages on my phone right now and it stresses me out so much that I have no intention of listening to them. My ringer has been off for 4 days now. If you need to get a hold of me email might be your best bet. Even then, I have lots of emails I need to respond to. I'm sorry! I do hear you and love you, I'm just dang tired.

Oh, and I need to share the great success Ive had this week with my leg. I had two therapy sessions at the hospital where they wrapped up my leg with bandages to push the fluid out. When I took off the bandages I was looking at the smallest Ive seen my limb in months! Peasant surprise! The therapist told me to compare lymphedema with diabetes-not curable, but defiantly manageable. I like that way of looking at it!

Ive been wearing capris and skirts despite the ugly stocking. I just tell people "its my prosthetic limb. They did a good job, hu?" And then I fake a limp.

Now that Im in my right mind, my leg really doesn't bother me, and I realize its a small price to pay to cut out the cancer. I'm sure you could all see that, and I feel like a brat for complaining.

Today, though, there is not one thing to protest. Including the weather.

Thursday, February 14, 2008

true love

I thought of you, Josh, when I read this today:

And in Life's noisiest hour,
There whispers still the ceaseless Love of Thee,

The heart's
Self-solace and soliloquy....

-Coleridge


Tuesday, February 12, 2008

winter of my life

After 8 weeks of an unusually cold and stormy winter, today we had sunshine for 10 hours and hit 50 degrees. I soaked it all up in a profound happiness, and pledged to remember this feeling. It was like God reminding me that there is a warm sun behind the clouds, and green grass under this foot of snow.

This is just a season. Not the season I prefer, but one with its own splendor. With its own purpose. Even tulips require long, hard winters to bloom. The deeper you plant them, the stronger they grow.

I thank God for my trials that strengthen me. They strengthen me because I rely on Him. I remember Him. I grow when I get on my knees in complete humility and thank Him for life, and then beg Him for more of it.
I love this picture (taken 2 years ago). Timp reflecting off our window, boys in yellow, green grass, pink tulips, and Luke crawling out the front door to find momma. Come and kiss me baby!

Saturday, February 9, 2008

whine with my cheese

Its been such a great week. I'm glad I'm getting this small break from treatments to remind me Im going to be back to a good pace after the next nine months of therapy. I have been waking up early, showering, taking the kids to the park, swimming, going on walks, trips to the dinosaur museum, cleaning my house, organizing closets, cooking dinner, shopping (and enjoying it!). I have also put on the 7 lbs I lost. My appetite has been great! I even took in my moms dog this week. That means Ive got to be somewhat stable, right?

There was an incident on Thursday that had me wondering. I had an appointment at a lymhedema clinic to get a massage and pick their brains about if it could be spreading to my left arm (you heard it, my arm is slightly swollen at the end of the day now. I keep telling myself its impossible, but who knows?). I get there 10 minutes early (10:50). I walk in behind a lady whos legs are huge, swollen, and infected. The waiting room is full of elderly like her, but in wheel chairs. I feel so bad for them, and so mad at myself for complaining about my very mild case.

The lady who walked in front of me says to the receptionist, 'here for my lymphedema appointment' and sat down. I was up next but couldn't get the word lymphedema out of my lips, so I just said "my name is Alisa Linton." She looked at me, disapprovingly, over her reading glasses a little and said, "Im sorry, your appointment was at 10. We cant get you in now." I felt so stupid. I was sure it was at 11. I got up and out of the house by 10, had a babysitter, drove all the way to Provo. I just stood there trying to say something but instead I just cried. Like a baby. In front of everyone.

I walked back through the snow to my van, got in and had myself a good pitty party. And then Mitt Romney dropped out of the race. Made for more tears. I was so confused at my emotions. Ive always liked a good roller coaster, but this is ridiculous. As I drove to get myself a big fat cinnamon roll to cheer me up I passed the rehab in Provo I think famous for hosting the likes of Brittany and Lindsey. I seriously almost checked myself in.

Of course I was fine by the time I got home.

Which led me to try and find out if this behavior is 'normal.' Ive never had someone close to me go through this. So I gave in and read a few melanoma and other cancer blogs. I was very glad to know they all go through emotional times no matter how positive/faithful/strong they are/were (most of them died).

I will say that they get to do two things I cant because they are against my religion. Swear and drink. I'm a little jealous!

Monday, February 4, 2008

political insomnia

How are we suppose to sleep tonight? This election thing is making me crazy. Could Mitt possibly pull it off? Will I really have to vote for McCain or Hillary? Im hoping its a season of underdogs.

Also Im nervous tonight about Punxsutawney Phils prediction of a long winter. We got a foot of snow on Sunday, and every inch seems to weigh me down that much more.

To my boys every inch is a Christmas present waiting under the trees to be unwrapped. A smooth blanket of snow calls out to them to be the first to walk across it, fall down in it, and gather it up. I remember being a kid and not feeling the cold too. When do things like this change? When do we stop thinking its fun to touch a frogs belly, trap rodents, or catch grasshoppers? When did I decide, just because its winter Ill spend my days inside?

James has even been claiming that he's going to spend his nights outside in his snow cave (big enough only to fit a very flexible child). "Its huge. Theres room for me and even some space for my stuff." All the plans are laid out with his friend across the street for a meeting at midnight to have a sled party. So Tom-Sawyerish. Josh and I laugh at him and tell him he would last maybe 20 minutes. He thinks he can do it, only because he has never felt the air at midnight in February.

Is it better to never experience that kind of deep, biting cold? Or does is make summer nights a hundred times better?

Sunday, February 3, 2008

me. right now.


Josh just took this. I'm slightly embarrassed about every single thing in this picture: the baby blue frumpy robe, the seventies-looking tissue box, the sharps container, the Mary Kay moisturizer, the extremely large cat I'm holding (meet Winston, who has gained a lot of weight over this cancer thing), the lego rocket ship Sam made me (and though Im proud to have it, it should have been put away a long time ago), the get well card, the stack of unread Martha Stewart magazines, the glass of water with a straw inserted. Could I be any more nursing-home-patientish?

I'm actually feeling pretty good today as my Dr. suggested I give myself a week or two break from the nasty drug and let my antidepressant get in my system. She said my sad feelings were defiantly a side effect of the drug. It does things to your brain. I think its also because its February. And my leg is swollen (which Ive already discussed). And I have a 50% chance of dying in the next few years.

But dang it I'm feeling so normal today its going to be hard to put that stuff in my body again. Its giving me hope that when this year is over Ill get back to my normal pace.

Monday, January 14, 2008

FAQs II

warning: this blog contains horrible grammar. I tried to write it up pretty and correctly without the use of multiple commas and italics, but it wasn't working. In addition-I don't remember any rules of grammar, so there.

Where the heck have you been?
In the depths of despair, I guess. Not all the time, but often. This post is going to be a bit boring/informative/depressing and your welcome to kindly skip it. I even hesitate writing about it, except I told myself I cant blog about anything fun (like my last minute birthday trip to Chicago) till I fill you in on whats been making my life a little miserable.

Whats making you miserable, the shots? Its not the shots. They are sooo much better than my daily infusions. I will say I feel sicker more often than I used to, but maybe its just cause Im awake so I notice it. Some nights after the shots I'm up with the chills feeling very awful, but I only take them three times a week, and it certainly doesn't happen every time.

Are you still tired? I feel much less tired. If I sleep in I don't need a nap. Its just not that bad.

So your good, right? I feel like if I wasn't dealing lymphedema my life would be pretty perfect. Thats how I always am with trials though. I always think, 'anything but this. I could handle anything, but not this.' I guess Ive made it through all those times. And I suppose this will pass too.

Lymphe-what? They have a word in cancer lingo called 'aftereffects.' Basically when your treatments are over its the issues that the surgeries or chemo have left you with. I was sure I wasn't going to have any. Last month though, my leg started swelling. I was a little freaked out, but got an appointment with the occupational therapist. But she told me I had lympedema and that I always would.

What is lymphedema? So you have vessels and nodes thats part of the circulatory system called the lymphatic system. It collects and filters fluids throughout your body. It also helps in the immune response. If the system doesn't work properly the fluid cant make it back to the heart and it stays in the effected limb.

Why did this happen to you? I was only suppose to have a 10% chance of this happening after my second surgery. Breast cancer patients who have their lymph nodes removed have a 20-30% chance of getting it in their arms. The dr.s thought it would not happen to me because I'm young.

Heres what I think: It was that nasty infection I got post op. I'm going to have someone (I don't know who, Ive got to get some Dr. friends) do a study on it, but I think they should give you low dose antibiotics post op to someone like me who has had a) the nodes out, b) has a drain in their leg for a month just begging for an infection to climb up the leg, and c) has no way of fighting it off cause the lymph nodes are no longer there.

What are the complications? The fluid that is stuck in your leg is a good breeding ground for infections. I guess if your leg gets an infection its hard to clear up. You also lose some of your range of motion. Once the fluid has been there for a while your body grows connective tissue and fat, so your limb literally changes in size.

They call this a chronic progressive condition. If left untreated it can progress to later stages which they call elephantiasis. Did you read elephant? Perfect.

Worst case scenario? In rare cases of repeated infection, amputation. If you know me, you know Ive considered it.

Is there a cure?
No. They treat it, and try to stop the progression, but they cant figure out how to make it go away. For now the treatment is these ugly annoying compression stockings (which they only make in black and 'nude' that don't resemble anyones skin tone) that I have to wear all day. And then Josh massages it every night to try to get it out of my leg (and p.s., although he is sad that I am sad about it-he maintains he doesn't care that my legs don't match. Do we believe him?).

Is there hope? Theres always hope. I have some major faith in my genius brother Mike, who is conveniently getting his Phd at the U in microfluidics. I don't really know what that means, but I know if anyone can save people in the world like me, its my brothers. At least he said he would look into it-hope you were serious!

Whats so bad about a swollen ankle? Basically its just ugly, and a pain. I have to try to hide my ankles cause they look a little...off. I cant wear most of my shoes cause its too tight a fit. I'm not suppose to wear high heels at all (I've broken the rules of course because my winter boots hide it). That alone is enough to make a girl depressed isn't it?

To be honest, I think its been harder than the cancer thing. Not that I would rather have cancer, but it was easy to think I'm either living or dying, whats so hard about that? I didn't think option three was turn into an elephant!

The dying option was sounding good last week (which is so against everything Ive learned about life this year). I think the medicine is starting to play tricks with my mind and/or emotions(a common side effect is depression). I'm not used to being so sad and angry. No, I'm not used to being sad or angry.

Anyway, Josh went out of town for a night. We had strep. Luke was up coughing till 3 am (well actually I was up trying to cough for him because I have issues when I think my kids cant breathe) . I had given myself a shot that night and felt like I had the flu. I was so sad about my leg, I was pacing and crying.

I was seriously worried the cancer wasn't going to kill me. Whats going on? I'm 6 months into my diagnosis, I should be strong and brave and grateful to be alive. Shouldn't I? But then again, I can grieve over loss of said gorgeous limb cant I? Shouldn't I?

That was probably the worst night of my life.

But morning came and took it all away. Sometimes you just need to see the sun, don't you? Is that the same sun that gives you cancer and gets you here in the first place? The irony.

Are you really that shallow? Yes. But I'm trying not to be.

So, hows your leg doing? I'm only clicking 'publish post' because I've come to some sort of terms with having a 'condition'. I really am ok. I'm not ready for you to bring it up, though. If you want to see me cry, just ask me how my leg is doing. But if anyone has good news about lymphedema, please share it!! Tell us its not as bad as I'm describing and that I need to stop crying about it. Well, I know I need to stop crying about it. I just cant.

Is this blog going to get chronically progressively worse too? Most likely. But my next post is to chronicle exciting times in the Midwest!! And yes, I can still have fun!

Monday, January 7, 2008

supernovae

Just a few words on James' (my six year olds) holiday.

James has been skeptical of Santa for years. Ever since he heard about him. I don't like to lie about said large man. Ive been dealing with the question "is Santa a real person?" by asking him "what do you think?." Or sometimes, "You will know when your older." He would sadly admit "I think I already know."


Here is James at Josh's cousins' Christmas Party (circled in red). He seems to be saying "You think this big guy can fit down your chimney? Impossible!"

This year on Christmas eve we watched Polar Express and by the end we were both confused about our convictions.

We caught him on tape that night, admitting he now believes in Santa. I was so proud of him! Maybe because I could never have said that at age 6, or because it was before he opened all the things on his wish list, or maybe because its just time to believe in good things. I don't know, but it felt triumphant.

On New Years at my in laws we took turns toasting something to 2008. I toasted 'to life' with a wink. James caught right on and got a little somber. He took his time, and asked if everyone was listening (all the while staring at me). He then toasted to what I think we all wanted to say, 'to health.'

That night he sweetly prayed, "please bless ALL the things we toasted to tonight will come true."

Hes not all hope and faith, though.

I was just reading to the boys the book A Pocket Full of Kisses. Its the rather cheesy story of a boy raccoon who is worried about his mom sharing her love and 'kissing hands' with his little brother. He doesn't think she has enough love for the two of them. So in a sentimental moment the mom takes the boy outside, points to the sky, and explains:

"Every night, just before the sun goes down it reaches out with its rays and touches every star in the universe. One by one, the stars light up and shine down upon us. Even on nights we cant see the starts, they're up there sparkling away. No matter how many stars fill the sky, the sun will never run out of light, and its rays will never stop reaching out to them.

Thats the way it is with kissing hands. When somebody loves you, their kisses are like the suns rays-always there and always shining."

James quickly jumped in "yea, until it burns up all its fuel and explodes."