Monday, April 2, 2012

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.

18 comments:

Lauren said...

Megan & Wes- Our hearts go out to you. Please know you are in every one of our prayers and wish you a speedy recovery. I know everyone is saying it but megan, please let me know if I can help.

Valerie Chandler said...

Love you ,Megan. You are exceptional. Our love and prayers and thoughts and pleas are with you all.

Telsha Winger & fam said...

You two are so strong. So many prayers are heading your way Including my own.

Sarah said...

Megan you WILL always see the good because you choose to look for it & you are so good. This update made me cry, my heart hurt for you, & yes hold my loved ones closer. We continue to pray for you. Thank you so so much for writing. It's too hard to ask you personally so this is a fabulous to get the news out.

Pam Graf said...

My sweet Megan, I pray for you and your family every day. Love you!!

Pam from Over the Big Moon said...

Your post had me in tears... this subject is all to sensitive, since we've been watching my SIL battle Stage 4 Triple Negative Breast Cancer the last few months. My heart aches for you and your family - your spirit and words are so strong though. Thoughts and prayers are always headed your way!

Emily said...

Oh Megan. This post made me cry so much. My heart hurts for you and your little family. You are an amazing person, you know that? I always thought so but this trial you're enduring so well is making me see that even more. I love how you ended this - looking for the good. Lift where you stand right? You and Wes are truly amazing. Prayers and love to you.

Bellastager said...

Your strength is amazing. Thank you for sharing updates and your feelings with us. Know that so many people are thinking about you and praying for you guys. Sending you love and praying for good health for all of you!

Lauren and Josh said...

Megan and Wes, we will be praying for you and your family. We hope Wes has a very quick recovery.

Amanda Orme said...

Megan,
Thank you for sharing your story! The love your family has is amazing. Bless you, Wes, and your girls as you fight this aweful cancer! Thinking of you all, praying for healing and peace, and wanting to make it go away. I love you! You are the pure sunshine...your constant postive perspective will make a difference. Hang in there Wes and Megan.

miss said...

I thought of you do many times during conference. I hope your brave husband is doing better!

EngineeringNerd said...

Megan thank you for sharing. Wes is such a strong guy. We pray for healing and your family as you deal with this sickness.

Megan said...

You and Wes are incredible, strong people. You are in my thoughts and prayers!!!

Sharla said...

Wow you are such an amazing family. We love ya and hope it gets better from here on out.

B and B Slack said...

I've been wanting to comment for a few days now, but I am just not sure what to say. I am so grateful that you are sharing your "cancer journey" with the rest of us. You are both an inspiration to all of us. We'll be thinking about your sweet family@

G/S WINEGAR said...

Please know that our thoughts and prayers are with you. It is unbelievable what the two of you have gone through. I have put your name in the Jordan River Temple on more that one occasion. With much love Gary & Sharon

Wendy Nicholes said...

Wes and Megan-
Thinking about you and your family through this trial. I really don't understand why these things happen to such good people. We appreciate that you are sharing your story with us. Hugs!!

Christy said...

i am so, so sorry for all you guys are having to endure. this post made me cry. i know the Lord is mindful of you and your sweet family. praying for you guys... always.