Priceless

When I was a young boy growing up I remember going to my Grandparents house and asking Grandpa to go through his picture books with me. It was like a window into a different time. I got to see him as a boy, a soldier, a young man and other times during his life. I got to meet people that had been gone long before I was born. Grandpa helped me meet and recognize people I had never met. I can think back to those times and remember them very vividly. Those pictures and that time together are priceless.

When Grandpa passed I remember being so sad and missing him so much. When I think of him now I remember the good times, his laugh, his smile and lots of time playing cards. I have been told that when you can think of the person that is gone and be happy for those good times you will know that you are healed.

In going through different things in our house what is priceless has been crossing my mind. They say that some rare gems or precious metals can be priceless. Well I guess value is truly in the eye of the beholder because for me the largest, rarest, most expensive diamond in the world is not priceless. It would have nowhere near the value to me that the price tag would imply. A card from a loved one, a picture of a forgotten memory or a note can be truly irreplaceable and priceless.

We are very fortunate to have taken so many pictures of our time together. Sometimes it did feel like we were living life through a viewfinder because of all the pictures we were taking, but I am so glad we took them. In looking at the pictures I am so thankful for the person that was behind the lens. A relatively small percentage of the photos we took wound up in our annual or special event photo books. It is fun to look back at camping trips, weddings, vacations, one of us being goofy, and so many moments of living. Life is a priceless blessing.

After our trip last year to Florida I made Parker a photo book. It was made to retell him the story of that trip and cement those memories. Kristin and I had talked about making such a book before the trip, and we captured a lot of special memories. We read the narrative we put with the pictures countless times to Parker, and I have continued to read it to him from time to time. He will always remember that trip now. I have no doubt.

In going through things in the house I think we saved every card we ever gave each other. It has been good to read them and remember the words that were written and what we shared. They have been difficult to read too, but they are far more precious than any stone could ever be. One message in a card from before Kristin got sick that struck a particular chord with me was a line about thanking God everyday for each other, our love and our health. While it is easy to forget, being healthy is truly priceless. Parker and I pray for the health of our families and friends and relatives everyday.

It is amazing to see things in Parker that he learned from Kristin. Every time he sees our pets and says, “Look at our sweet, cute, birdies.” it puts a smile on my face and touches my heart. When he sits next to me and says, “Snuggles” and then shares them with me I think of all the times Kristin did that with him. When he says, “Daddy........... I love You” I think of all the times Kristin said something similar to him. Last night Parker asked to listen to the songs that Kristin recorded for us. He wanted me to sit with him while we listened. He said that he was kind of sad because he missed Mommy because she was in heaven, but she left her voice for us. Love is the most priceless gift of all.

Below is a poem we have had hanging in our house for several years. Today feels like a good day to share it.

Patrick - 03/12/15

Live, Love, Laugh

LIVE as if each moment

could be your last!

Hold onto every second

do not idly let them pass.

LIVE life to its fullest,

a blessing that can be.

Put on those rosy glasses

and let there be beauty

in all you see.

LOVE with a heart of passion

in all you endeavor to do.

Share it with others and

it will return back to you.

LOVE all the wonderful things

this world offers you.

Let it fill your longing heart

for this is a blessing too.

LAUGH as often as you can

'cause that will brighten your day.

Share it with others, in your voice,

your smile or some other way.

LAUGH because you know it will

take your stress away.

LIVE, LOVE, LAUGH...

and let this be

your very best day.

Cancer

Cancer has been on my mind a lot lately for different reasons. Someone I met a few years ago through work found out recently that his son has stage IV cancer. He is almost the same age as Parker. We went to a benefit meal for him recently. Parker has been having more questions about cancer. So I have been explaining that someone can be sick and not have cancer and that if you have a cold it doesn't mean you have cancer. We also found out recently that a relative has DCIS. So we have been praying for some new warriors. Plus four years ago yesterday Kristin had her mastectomy.

These things led me to think about when Kristin was diagnosed. She had noticed a lump for some time. Her doctor had told her a couple of times that it was just part of pregnancy and then that it was from nursing. She had an ultrasound done that didn't indicate that it was cancer. It seemed to be getting larger so Kristin insisted upon having a mammogram. I remember being concerned that it could be cancer, but I figured it was probably nothing since that is what we had been hearing from her doctor. When Kristin called me at work and told me I needed to come to the hospital I knew the news probably wasn't going to be good. I remember praying the whole way to the hospital. I knew when I saw her that it was cancer. It was still just so shocking. The mammogram and biopsy sounded awful and very painful. I think about our relative going through something similar now. I wish nobody had to go through it.

One of my co-workers was talking to me recently about how someone could do anything but focus on how much time they have left when they are given that information by their doctor for themselves, their child or their spouse. The thing is that nobody here (doctors included) knows how much time we have. I was very thankful for the honesty that Kristin's doctor had when talking about her prognosis. He would tell us that he didn't know how much time she had. He would give us statistics if we asked, but he never pretended to have a crystal ball. I really appreciated his honesty. The thing that Kristin focused on was the treatment she was receiving and how it was helping. She knew that the treatment may not be the cure we were looking for, but she believed it could give her the time she needed to get to her home run treatment. Even though Kristin never received that home run we always focused on the fact the the next one could be it.

I'm sure many know Jimmy V and his speech (if not it is worth a quick Google and a few minutes of watching the video). Since Kristin's passing I think his words, “Don't give up, don't ever give up.” have taken on more meaning. I am SO proud of Kristin for never giving up. She never turned down any treatment. She always wanted to get better for us. She fought so hard, and she never gave up. So I think when someone is given the news that their time may be short Jimmy V's message still rings true and is important to focus on. We should never give up or count down the days. We should live each day to get the most out of it that we can and remember that miracles do happen.

So now I am going to write about what I had intended to with this blog. There are good things that came from cancer for us. Below is a list of some of them.

• We decided to build a home. If it were not for cancer we would probably still be living in our duplex.
• We would not have met and made friends with some wonderful neighbors. Parker wouldn't have friends next door to play with.
• We would not have gone to to Disney World and Universal Studios. That was such an amazing trip and one we will never forget. Kristin did so much planning and organizing it for all of us. Parker still asks at least once a week if we can go back to Florida. We give a special thanks to Memories of Love for helping to make the trip happen. They are a great organization.
• Kristin probably would not have been a stay-at-home mom. Parker and her had a lot of special time together that would not have happened without cancer.
• Parker and Kristin would not have biked to local ponds on a weekly basis during the summer to go fishing. This may have prevented Parker from associating me with being the one that isn't very good at getting the fish off the hook, but maybe I can surprise him this summer :)
• Kristin probably would not have met some very good friends that she got to know through her Mom's Meetup Group. It is hard to imagine the void that would be there without those friends.
• We developed some amazing friendships with people at our church that would have been much different or may never have evolved to where they are today without cancer.
• The connection we have with our church community would have been so much different without cancer. It is hard to imagine feeling quite as connected or as loved by the people there if it had not been for cancer.
• Kristin would have had much less time for crafting, knitting, quilting and making things for Parker.
• Liz and Fynn may not have had hand-knitted blankets from aunt Krissy.

I am sure there are other things that I have missed. So while cancer is a terrible disease, not all that came from it for us was bad. I pray that someday it can be like small pox or measles and no longer affect so many people. I also pray that we all keep living, loving and laughing and that none of us ever give up. Until my next post.

Patrick – 02/18/15

Kristin & Parker

Just 11 Days After Her Mastectomy

Songs

"Ain't it funny how a melody can bring back a memory, take you to another place in time?" Well those aren't my words. They are actually from the song "State of Mind" by Clint Black. If you have been around me enough you have probably heard me say "That reminds me of a country song." I know some people don't care for country music, but part of what I love about it is how it is so often about life. Well Clint Black's song along with a few others have been on my mind lately. Some have taken me to a different place in time, but most have struck a chord in other ways. So here are some that have been on my mind lately.

Our song was "Living and Living Well" by George Strait. I think the reason we liked it is self-explanitory Here are a few lines from the song.

Had a nice little life
A little boat, a little beach
A little routine I liked
A blue ocean view
Free to go with the flow
Anywhere that I wanted to
But the moment you set foot on my shore
That's when I knew.

There's a difference in living and living well
You can't have it all all by yourself
Something's always missing 'til you share it with someone else
There's a difference in living and living well.

The next song is "The Gambler" by Kenny Rogers. Over the last few months when I was feeling down I would think about the lines below. I would substitute cryin' for countin' to remind me there was no need to cry right now.

"If you're gonna play the game, boy, you gotta learn to play it right"

You got to know when to hold 'em, know when to fold 'em
Know when to walk away and know when to run
You never count your money when you're sittin' at the table
There'll be time enough for countin' when the dealing's done

When Kristin started telling people that her cancer had spread to her lungs and her liver I remember hearing her say on the phone something like, "Don't worry about me. Dying is easy. I want to help you." I recently heard the Patty Loveless song "How Can I Help You to Say Goodbye?" These lines really reminded me of her phone conversations.

 And she said, "How can I help you
To say goodbye, it's okay to hurt and it's okay to cry
Come let me hold you and I will try
How can I help you to say goodbye"

A few months before Kristin passed I heard Dolly Parton's song "I Will Always Love You" on the radio. These words definitely brought tears to my eyes.

If I should stay
Well, I would only be in your way
And so I'll go, and yet I know
That I'll think of you each step of my way
And I will always love you
I will always love you

And I hope life, will treat you kind
And I hope that you have all
That you ever dreamed of
Oh, I do wish you joy
And I wish you happiness
But above all this
I wish you love
I love you, I will always love

I will always, always love you
I will always love you
I will always love you
I will always love you

Around the same time that I heard Dolly's song I heard a song by Dan Seals entitled "If I Had Only One Friend Left." I know this blog is getting long, but I had to include all the words to this song because they are so meaningful.

I always thought you were the best
I guess I always will
I always thought that we were blessed
And I feel that way still
Sometimes we took the hard road
But we always saw it through

If I had only one friend left
I'd want it to be you

Sometimes the world was on our side
Sometimes it wasn't fair
Sometimes it gave a helping hand
Sometimes we didn't care

'Cause when we were together
It made the dream come true

If I had only one friend left
I'd want it to be you

Someone who understands me
And knows me inside out
And helps keep me together
And believes without a doubt,
That I could move a mountain
Someone to tell it to

If I had only one friend left
I'd want it to be you

'Cause when we were together
It made the dream come true

If I had only one friend left
I'd want it to be you

Someone who understands me
And knows me inside out
And helps keep me together
And believes without a doubt,
That I could move a mountain
Someone to tell it to

If I had only one friend left
I'd want it to be you....

This next song has been on my mind at different times over the last four years. One reason is it has the word cancer in it. It talks about being there when her time got small. Which really hit home the last few weeks of Kristin's life. When I read the lyrics today I remembered it includes "holdin' her hand, when the Good Lord called her up". I am so thankful that I was able to hold her hand through that very moment.

He said "Spent five years in the bottle,
When the cancer took her from me.
But I've been sober three years now,
'cause the one thing stronger than the whiskey

Was the sight of her holdin' my baby girl.
The way she adored that string of pearls,
I gave her the day that our youngest boy, Earl,
Married his high school love."
"An' it's a new tee-shirt saying: 'I'm a Grandpa'.
Bein' right there as our time got small,
An' holdin' her hand, when the Good Lord called her up,
Yeah, man, that's the good stuff."

Shortly after Kristin's passing Parker and I drove up to Wisconsin to visit some family. "I'll Wait For You" by Joe Nichols came on the radio. It would not have surprised me too much if Kristin had wrote a note similar to the lines from the song below. I am glad she didn't because I want her in heaven with God and other loved ones.

The doctor said, she's in a better place
She said to give this you this note just in case

And it said, I'll wait for you at Heaven's gate
Oh, I don't care how long it takes
And I'll tell Saint Pete I can't come in
Without my love and my best friend
Oh, this ain't nothin' new
Sweetheart, I'll wait for you
P.S. I love you, too
Sweetheart, I'll wait for you

Ronnie Milsap's song "I Wouldn't Have Missed It For the World" has come to mind over the last couple of months. I'm so thankful for the time Kristin and I had.

I wouldn't have missed it for the world
Wouldn't have missed lovin' you girl
You've made my whole life worth while
With your smile
I wouldn't trade one memory
'Cause you mean too much to me
Even though I lost you girl
I wouldn't have missed it for the world

When Parker and I were driving up to Wisconsin for Christmas Lonestar's "Not a Day Goes By" song came on the radio. Well I had to dry my eyes after hearing this one too. Here are a few lines from the song.

If you asked me how I'm doing
I'd say just fine
But the truth is, baby
If you could read my mind

Not a day goes by
That I don't think of you
After all this time
You're still with me it's true

Somehow you remain
Locked so deep inside
Baby, baby, oh, baby
Not a day goes by

I often wish we had just a little more time. Which makes me think of the song "One More Day With You" by Diamond Rio. Here are a few lines if you aren't familiar with the song.

One more day, one more time
One more sunset, maybe I'd be satisfied
But then again, I know what it would do
Leave me wishing still for one more day with you, 

one more day

First thing I'd do is pray for time to crawl
I'd unplug the telephone and keep the TV off
I'd hold you every second, say a million I love you's
That's what I'd do with one more day with you

As we have been finding our new normal Billy Dean's song "Only Here For A Little While" has been in my head fairly often. It brings me more happy thoughts. It makes me feel good. Here are some of the words.

I'm gonna hold who needs holdin'
Mend what needs mendin'
Walk what needs walkin'
Though it means an extra mile

Pray what needs prayin'
Say what needs sayin'
'Cause we're only here
For a little while

I know Parker has songs that are special to him too. Don't worry I haven't corrupted him enough for them to be country songs yet. Some of the songs that are special to him are "Twinkle Twinkle Little Star", Silent Night", "Jesus Loves Me" and "Here I Am Lord". In church this weekend after we sung "Here I Am Lord" he said "I love that song." When I sing it he is always telling me to stop. So I didn't think he liked it. Apparently it is just my singing that he doesn't like :)

Last night was the first time that I felt truly happy for Kristin. I know she is in heaven and there is no place better for her to be. I know there are things she is missing here, but the only reason to be sad over that is because we miss her. We are missing her, but she is in Heaven. So this leads me to one more song from church which is "I Believe I Do Believe Truly I Believe It". Parker and I were singing this tonight. So I guess I do finally truly believe.

Try this link to hear the song.
https://video.search.yahoo.com/video/play;_ylt=A2KLqIHEasBU6SMAfsr7w8QF;_ylu=X3oDMTBzc2M2MjdyBHNlYwNzcgRzbGsDdmlkBHZ0aWQDBGdwb3MDMTE-?p=i+believe+i+do+believe+truly+i+believe+it&vid=eb3f82609e8e1d633c24e2f223ed2a22&l=1%3A17&turl=http%3A%2F%2Fts1.mm.bing.net%2Fth%3Fid%3DVN.608049738981376596%26pid%3D15.1&rurl=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3D4mqyEqY1gq0&tit=Truly+I+Believe+It&c=0&sigr=11bli8c9n&sigt=10ina7vfc&sigi=11rekveut&age[0]=1313078400&fr2=p%3As%2Cv%3Av%2Cm%3Asa&hsimp=yhs-001&hspart=mozilla&tt=b

Footprints

While I was growing up the Footprints” poem was hung in our hallway (see below). I remember it being read to us multiple times. This poem always seemed to mean a lot to me. I have thought about it many times through the years. I actually incorporated it into my proposal when I asked Kristin to marry me. After we found out that Kristin had cancer this poem took on a new meaning to me, and I believe it did to Kristin too. Kristin and I would say to each other when one of us was struggling that God would carry us through. I have thought that and believed it to be true many times. Since Kristin has passed I have thought about the poem and read the version hanging in my bedroom many times. Here are some of the times God may have carried us through:

• Maybe it was when a friend stopped by the chemo suite unannounced to brighten Kristin's day.
• Maybe it was when a meal was brought over at just the right time when her energy was low and she could spend the energy she had playing with her family.
• Maybe it was the church that has always been there for us.
• Maybe it was the card received with the support she needed when she was feeling down.
• Maybe it was when a friend or family member rearranged their schedule to take Kristin to chemo or be with her when she couldn't be home by herself anymore.
• Maybe it was when the person on the other end of the line answered the midnight phone call to watch Parker so we could go to the ER to get Kristin the care she needed.
• Maybe it was when a friend worked on a quilt for her or with her.
• Maybe it was the friends that gave the two of us one last weekend trip together just before her health wouldn't allow for it anymore.
• Maybe it was the smile we saw on Kristin's face after she passed fulfilling her promise to me that she would beg God to give me a message that she was ok.
• Maybe it was the night I was wanting to talk to someone and a classmate I hadn't talked to in more than 16 years chatted with me online about some of her experiences with cancer.
• Maybe it was the invitation for supper, or games, or conversation when I didn't even know that was what I needed.
• Maybe it was a meal over the holidays when that extra time not cooking was needed.
• Maybe it was all the cards, prayers, and gifts of people showing their love.
• Maybe it was the song that came on the radio with a message I needed to hear just then.

I truly believe that God is carrying us through. I am so thankful for His help and all of your help!

One of the things I have read that people go through after a spouse passes is figuring out who they are again as an individual. When I first thought about that I wasn't really sure what to think or who “I” was. Kristin and I were together so much and for a long time. I always believed that it was “us” or “we” never her and I. So I have thought about who “I” am now. I don't know that I have it figured out but some of the things that describe or maybe define who I am are: father, son, brother, friend, engineer, Hawk fan, sports fan, lover of life, planner and believer in God.

I still have my struggles at times, but I believe we are moving forward. I am getting things done around the house. Parker and I seem to have a normal routine in the morning and the evening. We even weathered our first snow storm with just the two of us. We got the driveway and sidewalks cleaned and got to the Education Station and work at our regular times.

We still pray for mommy everyday and send her lots of hugs and kisses. We light candles for her and feel her presence. We think about her often, and we will always remember her. We are finding a new normal though. Thanks for your continued support and your prayers. Until my next post.

Patrick – 01/11/15

PS – I knew that Kristin's blog touched a lot of people. The blog keeps some statistics. The page has received more than 58,000 pageviews (almost 20,000 from iPhone and Android devices) from ten countries around the world.

Update

Thank you to everyone for your prayers and support. We really appreciate it. Thank you for the meals and company. Well we are almost through the holidays. They have been good for the most part. The hardest part has giving out some gifts that Kristin had made (but had not quite finished) and some pictures, slide-shows and songs of hers. I guess they were kind of a reminder of things she was not able to finish, and that the fact that gifts were part of us that made giving them hard. I started going through some of Kristin's things in our room trying to clean and figure out what to do with some of them. That was much harder than I expected.

People ask how I am doing. I guess I have been saying good, ok and fine for the most part. Which is mostly true. Most of the day I am good. The evenings after Parker goes to bed are still the hardest. I still don't think I have gone a day without crying. Well technically I probably did yesterday because it was after midnight before I did.

One thing that the cancer did for us was to slowly transition us towards a new normal. As the cancer progressed and Kristin was able to do less we slowly adapted to getting to the Education Station, working, making meals, doing laundry and everything else. So a lot of the day to day things do not seem that different now than they did for the last few months. Taking care of Parker and the house do not seem too hard. There are definitely times that I miss Kristin so much though.

Some friends from church gave us some helpful books after Kristin's passing. The books say that there is a difference between grieving and mourning. Grieving is what we think and feel on the inside when someone we love dies. Mourning is the outward expression of grief. Apparently I am better at writing my feelings than speaking them. So hopefully blogging can help with my grieving. The books also say that there will come a point when the person mourning will be able to look at pictures or think about the person that has passed with happiness about the life lived rather than sadness for them being gone or missing out on what could have been. I am able to look at pictures sometimes now and smile and feel happy. I am trying to focus on remembering the good times. I also am trying to focus on the fact that Kristin is in Heaven with God, so I should not feel bad for her.

So I think we are healing, adapting and moving toward a new normal. Your continued prayers, support, conversations, company and everything else are appreciated very much. If I don't ask for help please feel free to offer or call or whatever. Happy New Year!

Steele

Yesterday I learned that Scott Steele won his battle with cancer. Scott had battled stage 4 colon cancer for five years. Scott shared parts of his journey while being a DJ for KHAK (98.1) and we listened to him almost every weekday morning. I found out within the last week of Kristin's life that Steele had left the KHAK morning show to pursue other endeavors. I shared the news with Kristin. She was concerned about how he was doing. I assumed his health was still stable since I had not heard otherwise. Steele had a Caring Bridge site online where he shared more of his journey. I did not follow this, but I think Kristin read some of it.

A few years ago KHAK had a snow blower giveaway. They were planning to choose the winner based on letters people wrote about why they should receive the snow blower. Kristin's letter was chosen by Brain & Steele. The snow blower has definitely been a blessing to us. After that Kristin and Steele became Facebook friends. I am not sure how much they interacted, but I believe she took comfort in knowing that he was winning his battle and staying strong as well. I know I took comfort from his strength.

I pray that Steele and Kristin are both celebrating their victories in heaven. I pray for Steele's wife and newborn son. My understanding is that they were not supposed to be able to have kids and their son was an unplanned miracle from God. I pray that their son can understand the strength his father had.

Parker and I are good. We are grieving and mourning. It feels like it has been three months since I have talked to Kristin and not just three weeks. The thing I miss most is laying in bed and talking until one of us would get too tired to talk anymore. It was always so easy for us to talk. I have never had such ease of conversation with anyone else.

We are continuing to live. We are so blessed with such great friends, and families and our church. The evenings this week were a little tough, but God must have let some people know. Parker was invited over to a friends house for a play date. Some other friends invited us over to frost cookies with them. We had some company today, and Parker went to a birthday party. Tomorrow some friends are having us over. So that has been helpful. I'm not saying we need that much to do all the time, but it is nice sometimes.

Thanks for everyone's support and prayers. Until my next post. God bless!

Patrick 12/20/14

Kristin mentioned in her last blog post that she should have labeled her blog differently. I think a good label would be, “I’m not going to die, but live on-blog”. It is quite evident to me that Kristin is going to live on. The outpouring of flowers, plants, cards and gifts to Parker’s college fund have been amazing. It is even more apparent to me now how she was able to touch people’s lives and change them. That change that she made to people is part of the way I see her “living on”.


I am planning to continue Kristin’s blog by adding parts of my journey with her and into the future. When I shared this idea with a friend she suggested I could add some of the things I was thinking about or going through when Kristin posted some of her blog entries. I know Kristin’s blog has made a difference in people’s lives. I’m sure she realizes how much now. Hopefully some people can find some use in what I post as well.


There are many things that I plan to save and share or pass on to Parker in the future. If you would like to have him know one day how Kristin impacted your life please send me a message on Facebook or ask for my email. I will save these for him. There will come a day that they will mean a lot to him.


Parker reminded me the other day when I was feeling down that I don’t need to be sad because Mommy is everywhere. He told me later that night that he is happy because Mommy is in heaven. I am so thankful that we have been able to help him have such a strong faith. Parker’s words made me think about something that I have tried to remember throughout our journey with cancer. No matter how heavy the cross is that we may be carrying it does not mean that the weight we perceive is more than the weight someone else feels from their cross. It is funny that part of what has made me think of this is an episode of MASH.


Many people have told me that if there is anything they can do to please let them know. I will probably not be as good at this as Kristin was, but I will try. A friend told us when Kristin was first diagnosed that we would likely receive lots of offers for help (We did and we are so thankful). He also said that the help provided would not only be a blessing to us, but accepting the help would be a blessing to those that gave it.


With Christmas approaching and these other thoughts going through my head another that comes to mind is “It’s a Wonderful Life”. It really is in so many ways.


Patrick - 12/17/14

Kristin Beats Her Cancer

I have told Kristin a few times over the past few weeks that cancer cannot win. In the end the cancer will die, and You will be in heaven. Well November 28th is the day that Kristin beat cancer. She is in heaven now. I asked her to find my grandparents and play a game of cards with them. One of my grandpas will need a partner for the game since grandma is still here with us, so I asked her to be his partner. I also asked her to give her mom a hug and make a quilt for us. I am certain that she has already played some cards, shared some laughs, given her mom a hug and they are sewing now. She is at peace now. She is in no more pain. She is free and with God in all his glory. We are so thankful for all your support and prayers. God Bless!

I will love you forever. You have been my best friend, my lover, my honey and my everything.
Patrick (Kristin's husband)

Fight is on

I probably should have labelled my blog, as I don't want to die soon.  Because sooner or later we all have to face the facts that we will die, and we have little control over when or how it happens.  As a friend told me, some of us just graduate earlier that others. 
As for me, I am sadly headed down hill and am in need of some prayers again.  The cancer in my liver has made my liver hard as a rock and very uncomfortable to bend over or lean forward.  I am on oxygen at night and when I exert myself.  I'm slowly loosing control over my life and am having to lean on loved ones for help.  If you have volunteered and I have yet to call on you, be patient, there will be plenty of help needed and I have no doubt that you love us. 
My tumor maker is up yet again and I have chosen to switch doctors to get another opinion, she's much more positive that my previous doctor and I hope she has some more tricks up her sleeve.  But in all honesty, there is little left for the doctors to do, it is now up to God.  Thanks for all your prayers, I'm sorry I can't answer every card, but know they are greatly appreciated. 
((HUGGS))
Kristin

Short ER visit

Sorry I've been MIA on facebook and church events.  I was admitted to the hospital on Friday night for a fever of 104, then they were concerned about my cardiac perfusion growing and possibly my liver hematoma growing. Turns out everything is stable for now but my liver hematoma is large and extremely painful- I'm hoping that means that the cancer there is dying and causing alot of inflammation and thereby causing the fevers.  Hared to know.  Thanks for all your calls and concerns.  Right now my biggest need will be getting rides during the day to appointments while I'm on certain drugs I can't drive  I have this week covered already thanks to family.

Bad news, I am sorry

Greetings friends and prayer warriors.  I have bad news and I want to get it out before you hear it second-hand.  The cancer has progressed into my liver and the doctors believe that if it doesn't respond to the new therapy we could be looking at months.  So....... that leaves me planning for the future, leaving Parker with lots of birthday cards, graduation cards, letters, videos, songs and so forth.  I am not scared, I have come to terms with my disease.  But whatever prayers you can muster, would be greatly appreciated.  We want to pray especially for Parker and Patrick.  And obviously we pray that we get more time than just a few months.  Feel free to call me at anytime to chat, I want to reach out to all those who have reached out to me and give them a big hug.  I still have time for lunches, coffee breaks and ice cream runs.  Plus I'm frequently at the hospital, so if you work there, we can always find time to meet up.  I am getting radiation to my knee for some met pain.  But other than that which will soon subside I am pain free and loving life.  So help me celebrate!
Kristin

Minor set back

So while we were having the time of our lives at this year's block party, I got tired and dehydrated from some diarrhea that has been plaguing me for weeks.  That night after missing out on alot of the afternoon festivities due to needing to lay down, my blood pressure dropped dangerously low and we ended up once again at the ER.  Turns out I have C. diff, a bacterial infection of the gut that causes diarrhea and dehydration.  I was hospitalized for 2 days and sent home on an antibiotic to treat the infection.  But its not without a fair share of inconveniences, even after the diarrhea stops, I still have massive bloating and fevers.  But they are getting better.  I had great care as always at the UIHC, thanks everyone there.

33 and thriving!

The last three weeks have been great.  I don't have alot to say, but thank you for all your wonderful prayers, I know God hears them and answers them in His time.  A huge thank you goes out to all the wonderful women of my quilting group who each assembled an individual block of a quilt which was sewn together into a beautiful friendship quilt.  I won't mention any names on here, but you know who you are.  I absolutely love it, and it is so soft and it is my main go to quilt now when I'm napping.

Our son moved up to preschool this fall school year!  He likes his teachers and loves all the new toys and new class mates.  We are working on staying dry through the night, and working on controlling ours (and his) frustrations when things are challenging.

I love being a "housewife", doing cleaning, cooking, and laundry meanwhile squeezing in quilting, card making and knitting.  It keeps me busy.  My latest project is a "memory" quilt for Parker.  It is assembled from clothes he has outgrown, fabrics of favorite activities, sayings and other important or loved fabrics.  Its going to be a wonderful gift which he will cherish forever.

Huge steps in the right direction

Thanks to all your prayers and continued support I have made leaps and bounds forward in my recovery from radiation.  I even managed a mile hike at Kent Park this weekend, followed by fishing at eating out 2 times without getting an upset tummy.  So I think we are beyond the worst and are moving to new territory.  My tumor marker did go up some what but its still not as high as it once was and we still have therapies to turn to.  I also managed to go to church this weekend which was filled with hugs and support, exactly what I needed and was so looking forward to seeing.   I can't wait until next weekend.  Parker is doing great and is getting ready to start preK next month.  And on top of all these wonderful gifts our friends decided to treat us to a bed and breakfast in Galena, IL for just the two of us, we will be going in 2 weeks and I can't wait.   Grandma and Grandpa will be more than happy to watch Parker so we can get away for some R and R.   Thanks for all your continued prayers, they make a world of difference, so thank you and God Bless!   I'm working hard at my own version of PT, walking mostly, but am eager to try swimming soon too! XOXOXOX

More baby steps

So unfortunately, the radiation has left me pretty weak and I am trying hard to regain my strength.  Please pray for my continued strength and faith that God can heal all our pains.

Baby steps

I've changed my mind about moving to a caring bridge website as it is too much trouble.  So I will continue to keep you updated here.  Pain is gone, 2 more doses of radiation left,  nausea really a pain in the butt right now.  Please prayer angels, pray for me to recover from nausea and rejoin the party that is my own life.  Today at chemo, I was too dehydrated to get chemo, so I just got fluids. 

Prayer warriors help, I am struggling with pain spreading throughout my skeleton!  I've been in the hospital since Sunday to manage my painful bone mets.  My docs say I I may only have months to live, but no one can predict.  It depend on how I respond to my therapy.

We don't need any meals, right now, but if you are willing to help in person (or in spirit), I might take you up on it.   First off we need prayers.  Pray that the medicine keeps the cancer at bay or sends it running for the hills.
I am getting help from hospice, and they will aid at home.  I will have nurses and aids come to help with adjusting my meds, therapy for post radiation, and driving me to some appointments.
If you want to help, contact Patrick or I privately and suggest a way you can help,  here are some suggestions.  Please ask before you do something so we don't end up throwing out food we don't have room for.

1. Offer to babysit
2. Offer to mow the lawn
3. Take Kristin grocery shopping,
5. drive Kristin to appointments or help her at work to clean out her desk
6. Stop by for coffee, you now know I can't drive, but I have a coffee pot, and a keurig

My uiowa email has been terminated, my home Emil is ness.kristin@gmail.com
Thanks,
Kristin

New therapy MUST be working

Good news, the new therapy must be working because for the past 2 weeks, I've had the most horrible "tumor flare" ever.  My left femur hurts so bad I can barely climb stairs.  I'm mostly at home as I am in no shape to work, I am in chronic pain and on high level of pain relievers.  The doctor said that the thought is that the more pain you are in during the flare, the better response you will have from the treatment.  That doesn't indicate how long the therapy will work for, so we still have much to pray for, but we at least have a game plan for now. 
To clear up confusion from my earlier post, its not that I don't want to talk about my cancer, its that I like to talk about other things too, like normal things.  If you are concerned and want to talk to me about my situation, please talk directly to me, I am open to talking about my cancer.  But please remember to respect my wishes when it comes to treatment choices. 

Time to establish a new plan and a new normal

PET results are in, and major changes MUST take place.  Sadly the cancer has advanced significantly, both to my lungs and to innumerable lymph nodes in my chest.  This is without a doubt now going to take a miracle.  I still believe that I'm NOT dying, because I will live on in Christ always, just as we all will one day if we believe.  During this very difficult doctor's appointment, I was able to drag a timeline out of my oncologist, and he said that if the newest therapy does not work, we'd be looking at 6 months of "good time" where the cancer would be still asymptomatic, after that I'm assuming shortness of breath, pain and all that would be part of the equation.  So now is the time to live!  Whooowhooo.

Of course it was not easy to celebrate when you just lost 50 years of your life. First we need to discuss therapy- I am now on high dose estrogen (estradiol 6 mg), which in his words "the estrogen-starved cells are so excited to see that they get drunk and die within the first few days"  this causes what's called a tumor flare, which I'm definately experiencing (whooohoooo- good thing),  I have terrible joint and bone aches, so bad, I am on a schedule of some pain relievers every 4- 6 hours.  The cancer cells are dying with such rapidity that I'm feeling my bones almost falling apart.  So I am shut up at home sleeping mostly trying to stay out of pain.

I've put together a list of goals that I want to achieve in the next 6 months:
Goals:
-First would be to enjoy more time at home, stopping work, volunteering at Parker's daycare and writing letters to my boys as they grow up, exciting but also difficult work, so that's why I've got such great friends.
 -That brings me to my next goal of spending more time with friends and family doing anything and everything from fishing to camping to wine sampling.
 -My final goal for now- is to live a totally normal home life, make dinner for my family, kiss my hubby when he comes home, play with Parker at the park, go to church on Sundays and act like nothing has ever happened.  I don't want Parker to remember this as a stressful time, but a joyful one. As I come up with more ideas and plans I will share them. 

FYI: I'm really sick about talking about cancer, second opinions, trying new therapies, etc so if you have time and want to chat I'd love to catch up on you, life in general and anything besides cancer. 

All is good

All is good!  We are managing life pretty well despite some challenges.  Tumor markers appear stable, no pain from cancer, however I have this annoying and unpredictable pain in my feet from neuropathy, that would be nerve damage from prior chemotherapies.  I am trying various narcotics, lyrica, over-the-counter treatments, and so far I haven't found the cure.  The lyrica is supposed to specifically treat nerve pain and neuropathy, so I'm slowly increasing the dose and giving it time to work. 

We had a great trip to Orlando, we took advantage of a company called "Memories of Love" and we got tickets for Patrick, Parker and myself to both Universal Studios and Seaworld for free.  We even got the golden ticket at Universal Studios and Islands of adventure and got to go to the head of the line for ever single ride.  We decided to get our own sleeping accommodations as we brought Patrick's parents along, so we shared a lovely 2 bedroom condo off the Disney grounds.  We also went to Disney World and Epcot, it was a vacation of a lifetime.  Just prior to leaving I was diagnosed with strep throat and bronchitis, and went on a nebulizer and antibiotics for 10 days, I thought I was well and good, but upon returning, unpacking and cleaning up the house I started noticing the same symptoms again.  Yep, with a 103 degree fever it was back to urgent care with strep throat again.  Finally after a few days, my fever broke and the body aches became manageable again.

I did get my two antibodies yesterday, Herceptin and Perjeta, no problems and even the "poor man's tumor marker", my LDH, fell 200 points, so hopefully we'll hear some good news in a few days about the tumor marker itself.  I'm considering acupuncture as a back-up if the Lyrica doesn't start working soon.  While on vacation I survived by using a scooter and taking slow release morphine and rapid release percocet, which both made me very sleepy.  It was fine for vacation, but its not something I want to become dependent upon.  Thanks for all your support!