baby steps

I actually saw dust on my dinner table yesterday.

That means mommy and daddy have been gone for too long.

And we have not been a fully functioning household for way too long.

This second stay in the hospital is creeping up on two weeks now.

I thought he would recover quick and his pancreas would get better once they took everything out of his bowels.

Wrong.

But the cup of powerade they finally let him have after one long week of eating and drinking nothing was pure manna from heaven.

The nausea was still going strong and he was on the verge of vomiting for days and his pancreatitis numbers kept going up and up.

He was losing so much weight.

He bottomed out having lost 31 pounds.

31 pounds in 3 weeks.

Have you seen my husband? He does not have 31 pounds to lose.

They put him on a feeding tube while his bowels continued to rest.

It was getting incredibly hard to be patient and wait for his pancreas when my family felt so torn apart.

We couldn't even celebrate Lily's birthday together.

It was hard to watch Wes literally wither away in a hospital bed.

It was hard to keep coming up with encouraging words day after day.

I have never wished I could be two places at once more then I did last week.

Yesterday they put Wes on a full liquid diet.

Cream of wheat and creamed clam chowder were on the menu.

And the day passed with no nausea.

Dr. Kim came in that night and said if he keeps everything down and feels well he could possibly go home soon on a low fat diet.

All I could say was "whaaaaaaaat!?"

No one had even mentioned going home for the longest time.

Here's hoping for good things to come.

Baby steps, my friends, baby steps.

happy birthday to lily

my how much can happen in just one year.

i watched you on the day you were born struggle to breathe and eat.

look at you now.

you are so full of life and emotion.

you know what you want and you are determined to get it.

you love: to eat (especially anything on your big sisters plate), to follow your sister around, dance to music, your dad, to make people laugh, to chase a ball around the house, your sister, and playing downstairs.

you are: sweet, smart, stubborn, and the best kisser.

you say: "hello?" everytime you pick up a phone, "all done" when you hate something, and call for "halle" in the mornings.

you can: walk on your knees, but not your feet, be a handful and delightful all in one day, and do all the actions to "wheels on the bus" it is your favorite song along with "five little monkeys."

you eat: cottage cheese (for every meal if I would let you), treats, especially love yogurt, and spit out any green vegetable.

we love it when: you fold your arms for prayers, you do the "no no no" dance, you laugh only because other people are laughing, and when you snuggle up.

you should know: that this past year has been wonderful and hard. your dad got very sick and nothing made your mom feel better about life then playing with you, watching you smile, and seeing you learn and grow. you and your sister were the greatest blessings through our biggest trial.

you should really know: this love we have for you runs deep little lily pie.

surgery and more things that aren't normal

Where to begin?

Thursday, March 22nd

Wes was put on a liquid diet to clean his bowels out in preparation for his surgery the next morning. He had already been feeling terrible from radiation and as night wore on things kept getting worse and worse. He had near constant diarrhea and unbearable abdomen pain. He finally couldn't take it anymore and we drove off to the emergency room. They gave him medication for the pain and sent him home so he could sleep for the next few hours before surgery.

Friday, March 23rd

We woke up, said goodbye to the girls, and headed off to LDS hospital.

Wes was prepped and we waited together on his bed. It really is pretty comical that his feet hang off every hospital bed.

They wheeled him and my heart into the operating room that day. The wait was excruciating. I am so glad my in laws and my dad were there to sit with me that day. The whole surgical waiting room cleared out for the day as the clock ticked on and on and person after person was reunited with their family members fresh out of the operating room. Finally a phone call came saying he was stable and they needed a few more minutes to close him up. It had been almost 6 hours. Dr. Kim came out to chat about the findings.

First, the surgery went as well as he could have hoped. He was able to go in laproscopically and snip out his whole large intestine and the two tumors. He discovered that the tumor up high was almost completely obstructing his colon (this explained the diarrhea and pain from the night before. If that tumor had grown any bigger he would have been completely obstructed and would have needed emergency surgery). How thankful we are that everyone was able to fit him in when they did.

Second, he discovered some very large lymph nodes attached to the colon that made him almost positive the cancer had spread. This actually really pleased Dr. Kim. This would hopefully be the explanation for his high cancerous blood count. They have told us over and over that it is unlikely that two tumors would cause him to have such a high blood count. They were sure it had either spread to his lymph nodes or that cancer was hiding somewhere they had not discovered. He was happy to see that these enlarged lymph nodes could explain his high blood count. This also upgraded what was initially looked like stage 2 colorectal cancer to stage 3. This also means chemotherapy is not too far off. I am actually glad. I want to just shock his body and flush everything out so I never worry about cancer lurking somewhere that chemo could have killed. I say that now right, but just wait until I watch him suffer through that. I might change my tune.

Third, he wanted to make sure he cut all of the cancer out of Wes. The rectal tumor made this complicated and he was hoping to save as much of the rectum as he could in order to hook his small intestine up to his rectum for future use. He was able to get a clean margin and leave 2.5 cm of rectum for reattachment.

Fourth, he used Wes's small intestine to make a j-pouch and connected it to his rectum. He then cut a portion of that intestine out through his abdomen to be his new set of plumbing while the j-pouch and the colon area heals.

Fifth, in order to keep the cancer from being squished and leaking everywhere in the body by pulling the colon out through the ileostomy hole he created an unexpected incision around the navel to pull the colon out cleanly.

Sixth, I asked if I could hug him and he probably thinks I am weird.

We headed up to Wes's room to wait for him to come out of recovery. They finally brought him up and his smile was like sunshine to my soul. It was wonderful to have him safely out of the operating room with most of him still intact.

Saturday, March 24th

Wes was up and about.

They encourage patients to walk around as much as possible after surgery to stop blood clots and get your systems moving again. Our nurse told us most patients make it to the door and back the first time. Not my superman. He went all the way down the hall and back.

The girls came to visit.

Lily was practically jumping out of my arms to get to Wes. Halle was very careful with Daddy and held his hand so sweetly. She was also very interested in his ostomy bag or "poop bag" as she calls it.

Sunday, March 25th

Sunday was full of visitors.The girls stopped by with my parents, Wes's family stayed for a bit, my brother and his fiance dropped by, our bishopric came, and then some special visitors showed up. Three of Wes's gaming friends came with gifts in tow.

Everyone asked about the call of duty poster they hung in his room. They actually had t-shirts made that displayed their gamer tags and the words "pwn cancer" (I am told that when you "pwn" someone in a game you kill and destroy them.)

Everyone was so sweet to look in on him that day.

Monday, March 26th

Wes began to feel better and his ostomy bag had been working and he was trying more and more soft foods. I took this picture of Wes as he was trying to get warm and told Halle it was ghost daddy

She loved it.

It seemed like he was on the mend, but he randomly kept spiking low grade fevers when they would check his vitals. They pulled out his catheter thinking he would soon pee on his own. They gave him 8 hours to let his body try. All day nothing happened. We had more great visits from extended family that day. 8 Hours passed and he was able to urinate a tiny bit if he pushed and tried really hard. He was desperate to keep that catheter from going back in. He tried to pee a lot and was eventually getting out quite a bit, but had to really try to make it come out.

Tuesday, March 27th

Abdominal pain began to increase as this day worn on. Martha the ostomy nurse came and taught me and Wes how to change his ostomy bag and how to get supplies. I have now fed him, bathed him, clothed him, cleaned his poop bag and emptied his pee bag. It is truly humbling to be taking care of my companion in this way. It is a love like no other my friends. That night Wes was in some awful pain. I felt completely helpless as I watched him suffer. He wanted more medication, but wasn't allowed more even though the pain was unbearable. He was up all night. I am ashamed to admit I fell asleep for a couple of hours while he sat up. And the little dear let me sleep on while I was oblivious to what he was feeling. I am so grateful I was so exhausted as we stayed up that night because I think it shielded me from feeling too much emotionally.

Wednesday, March 28th

We figured something was not right because his pain was getting worse. He was putting out good urine numbers, but was spending half an hour in the bathroom each time trying to pee. Dr. Kim took some blood and urine tests and saw some numbers that he thought might be an infection. Wes was sent down to radiology for a CT scan of his abdomen. As we waited in his room for the results a physicians assistant came in and said Dr. Kim was at his Salt Lake clinic, but had just sent her a text saying the catheter needed to go back in. A nurse came in and hooked it up and immediately drained 2 liters of pee! Dr. Kim explained that the CT scan showed that his bladder was so full of urine the kidneys were backing up and pushing on his bowels causing some serious pain. His bladder had never completely woken up from the surgery and was not functioning. He would need the catheter for a couple of weeks. The pathology results came back and the lymph nodes they took tested positive for cancer. We meet with an oncologist soon to discuss treatment.

Thursday, March 29th

We finally saw the light at the end of the tunnel and were told we could bring Wes home. He was feeling so much better now that his bladder was draining

Family was waiting for us when he arrived and I was so happy to be reunited with our little girls

Friday, March 30th

It was hard to adjust to home life. Wes missed the hospital bed that would help him to sit up without using his sliced up abdominal muscles. The girls were extra needy and clingy to me making it hard to take care of Wes. He was finding ways to carry around his catheter bag.Wes was up and down the stairs doing a lot, his ostomy bag was putting out pretty liquidy stuff and was starting to scare me. It just didn't seem normal. He was pale and weak and nauseous, and the on-call doctor chalked it up to doing too much, saying it was all completely normal.

Saturday, March 31st

Wes woke up with severe heart burn. We figured it was his new plumbing getting used to everything again. I called the on-call doc again and he recommended pepcid. Mom ran to the store. Soon after Wes started vomiting. We called the on-call doc again saying he had vomited and was extremely nauseous. He said it is normal and prescribed some anti nausea/digestive medication and told him to stay on clear liquids. Wes was feeling terrible. Mom ran to the store again for broth and medication. He vomited again. I called the on-call doc again saying he had vomited again and his ostomy bag was putting out blood and pure liquid. He again said it was normal and to just give him powerade. I helped Wes get into the shower and he vomited again. I was over it and said we were going to the ER. He continued to vomit at the ER and a CT scan was ordered. The results were that his small intestine was not working and was five times the size it should have been. His food was not digesting and he had gotten so full he was backing up and vomiting. He needed a tube down his nose to suck out everything and decompress his bowels back to their normal side. They whisked him off in an ambulance up to LDS hospital. It was an image I never thought I would witness. I followed the ambulance and held his hand as he they put a tube down his nose and throat into his stomach. He looked awful and exhausted and kept throwing up. My heart hurt so bad that night to see him so pale, thin, and tired.I felt I had hit rock bottom two nights before as I watched him retch over and over and all I could do was sit and watch. I didn't know if my heart could take anything more. Watching Wes hooked up to so many machines was almost too much to handle.

It was the first time I have wanted to mentally check out since his diagnosis and just not feel anymore. There was way too much feeling going on.

Sunday, April 1st

Another sleepless night full of pain and frustration as he got used to the tube down his throat. He was absolutely miserable, but seemed to improve throughout the day. He seemed to sleep well that night.

Monday, April 2nd

The morning brought Dr. Kim.

I was so glad we had him back and no more on-call doctor. That man is like sunshine every time he walks through the door. He gets things done and just seems to know what to do. He looked at the labs they took and saw he had pancreatitis, something my dad had suspected Wes had since Saturday. They believe this has paralyzed his intestines and food has not been digesting but simply building up and building up until it had nowhere to go but back out. At this point there is not much they can do, but continue to pump him out and wait for the pancreas to calm down. The problem is Wes has not eaten in three days and can not eat or drink while that tube is down his throat. He is already skin and bones and if the fluid they are pulling out of him doesn't slow down soon he will have to be put on IV nutrition, something we do not want. Say a prayer for my love and hold your own sweethearts a little bit tighter tonight for me. They are so very very precious, I hope you never forget that.

And that concludes the very, very basics of what is going on since surgery. I don't even know if I have all my facts right. All the days and information just seem to be blurring together. There is so much I want to talk about: nurses and doctors (this boy is seriously loved around that hospital. Dr. Kim told me the anesthesologists fell in love with Wes before the surgery and told him not to screw this one up. We also have nurses not even taking care of him that day that have taken care of him before stop in when their shift is over to see how he is doing), help we've been given, the prepartion I believe I received for this trial, visits, general conference (was it just me or did this conference seem made for me and my family?), my sweet girls (lily's birthday is this week!), the way my girls make me laugh, how halle is blessing her daddy all the time because she knows she can talk to Heavenly Father about it, and the funny things my husband does despite this huge burden placed on his shoulders. There is so much turmoil and pain and worry going on, but surpassing it all is the good. There is so much good. All around, in people and in this world. I hope to always see that.

while he was sleeping

my mother in law and i watched the justin bieber never say never movie.
i did not pee between the hours of 8 am and 8pm.
i hugged dr. kim for cutting out my husband's cancer. he probably thinks i am a nut case.
all while he was sleeping.
the smile on his face when he saw me for the first time that night was something i will never forget.
out of surgery and adjusting to a new normal.
now the fun begins.

radiation

Wes completed his radiation treatment last Friday. I was able to go with him a couple of times. It was relatively easy to get this treatment done. They tattooed little dots on his body to mark where they were supposed to position him each time he went. They used those dots to lay him on a table, made him drop his trousers, and lay very still while they shot concentrated x-ray beams at his lower tumor from different angles.

He experienced some side effects. He was nauseous and had a bit of diarrhea. All normal. And nothing we haven't dealt with already over the past few months. He did not have a very big appetite after his treatments. He is already down about ten pounds since his colonoscopy. He didn't have much to lose before that so I am trying to fatten him up before he goes into surgery and loses another five pounds just from taking out the colon itself. Plus he can't eat until his small intestine starts working again after the trauma of surgery.

My skinny superman.

We took the girls with us to radiation one day. Like I said, it is fast so they had no problem in the waiting room. It is so interesting to be there. Most of the people waiting for radiation are older. I don't feel like we belong there. These people have lived a life and ours has only just begun. But then my heart goes out to them as I think that each of these old people is someone's mother, sister, brother, grandmother, grandfather. They all mean something to someone.

Cancer does not discriminate.

Aren't my sweethearts just darling?

happy birthday to me

bet you can't guess what i wished for.

a night out

Last night Wes and I called our best baby sitter Grandma and went out.

Just the two of us, all dressed up, and out for a nice steak dinner downtown.

We had so much fun.

And it was the first time I have ever ordered a steak.

I was pleasantly surprised.

Of course, cancer was a hot topic at the dinner table.

It's hard not to talk about cancer these days.

It's always there in the back of our minds now.

And honestly, I can't help but feel grateful for what it has done for our relationship and what it can do to us if we faithfully unite to beat this.

I've always thought people who are grateful for trials are crazy.

But here I am saying it and we've only just begun.

I am sure there are many hard days ahead full of different emotions.

Sadness, anger, worry, and fear to name a few.

But today we are feeling grateful.

Grateful to have an opportunity to treasure each other and see each other differently then we have in the past.

We have always been super close.

Best friends, turned lovers, turned husband and wife.

I did not think it was possible for us to get closer.

But in the days since his diagnosis we have come closer in different ways I didn't know possible.

Both of us feel so blessed to be able to go through this together.

To seal our marriage this way.

To walk through fire together and come out on the other end having forged a bond that you can't get any other way.

It is a bond that can only come when you truly have to walk through dark places together, whatever that trial may be and be there for each other.

Wes has always been my cheerleader.

Through school, pregnancies, births, sleepless nights, disappointments, you name it.

I have always felt like I have had to rely on him for strength.

Now it is my turn to be the cheerleader and the care giver.

He has given me a wonderful example to follow.

I hope every day that I can be enough for him as he was always enough for me.