May 12, 2016 (evening)

We met Dr. Clark. He is the radiation oncologist. He was very kind and patient with us. He did another exam...which was quite painful for Steve. He said radiation will be 6 weeks, not 7. He said the tumor is 7-8 cm, not 2-3. He feels like there's a 75% chance chemo and radiation will cure Steve. (Without surgery) He thinks we should meet with a genetic counselor. We made an appt for June 15th.

After that appt, we had "chemo class" with Jayme in Dr Chipman's office. It was about 40 min of information that took an hour and 40 minutes. By the time we left, Steve was REALLY hurting. We learned a lot about the side effects he's likely going to experience, and it's a LONG list. It's a bit overwhelming. We have several prescriptions to pick up and a list of over the counter meds we need to have on hand as well.

Tomorrow at 7am is the portacath insertion, then at 9:30 he has a special CT scan and radiation prep (they'll mark him).  Chemo starts at noon on Monday in Provo, then radiation at 3:30 in American Fork.

Steve is sad tonight because he wanted to enjoy this week, but he's been hurting so much...he hasn't been able to do much.

I am sad because I don't want to watch him suffer any more. It's so hard. But we need to fight together....and we will....starting tomorrow. Tonight we are sad.

May 12, 2016 (morning)

Steve had another rough night (pain).  It was also eventful as our fire detectors went off two times...we ordered all new ones this morning.  The nurse came and gave Steve his last IV (hopefully).  He's scheduled at 7am tomorrow to get a port.  Thank you for your love and support...keep the prayers coming.

For those wondering what a port is....here you go.

A port is a small disc made of plastic or metal about the size of a quarter that sits just under the skin. A soft thin tube called a catheter connects the port to a large vein. Your chemotherapy medicines are given through a special needle that fits right into the port. You also can have blood drawn through the port.

May 11, 2016

Last night was better.  Steve still has pain on his left side.  I texted Dr. Kawa and he recommended Steve go to a liquid diet for a couple of days and see if that will help.

May 10, 2016

We just met with Dr Chipman again. We have a new plan for pain management. We're going back to morphine. He feels like the pain on Steve's left side Is explained by inflammation in that area ( last they saw in the PET scan. )  Dr Chipman doesn't want Steve to take any ibuprofen during chemo.  The cancer has not spread any more than they originally thought.  That's great news. We have an appt with the radiation oncologist Thursday at 1pm, then we're going to have a "chemo class" with a nurse at 3pm. Steve is scheduled to get a port on Friday at 7am. Chemo and radiation start next Monday.

There is one difference in the chemo from what we originally understood...Steve will get both chemo drugs on the first day. The Miotycin C is just a quick push into the port....then the 5FU will get hooked up for 96 hours. So....the following Monday there will be no chemo.

May 9, 2016

I hope everyone had a lovely Mother's Day. I certainly did.

Steve's pain has increased over the past 2 days...quite significantly.  I had him take morphine again yesterday morning, and in the middle of the night, when he said his pain was a 9-10. The strange thing is that his left side is hurting again.  I'm not quite sure why, and neither is he.  It's very frustrating.  For now, I'm going to keep him on the heavier pain killer...it's so hard to watch him be in pain.

The PET scan was Friday; we still don't have results.  I'm hoping the doctor will call us, but since this is a new doctor for us, I really don't know what to expect.  We know we'll for sure find out on Thursday when we meet with the radiation oncologist, Dr. Clark.

May 5, 2016

Steve was awfully tired today. He slept all morning and struggled through the afternoon. Tonight Caitlin performed with 7,000 other 5th grade students in a patriotic program down at BYU. It's 10:30 and we just got home. Steve is pooped. Tomorrow morning is the PET scan.

Details

Here are my notes from the appointment today...this doesn't let me format paragraphs, so forgive the formatting... Cancer formed with gland forming cells are adinocarcinomas. Lining cells are called squamous cells. Steve has squamous cell carcinoma. It is very rare. .25% of all rectal cancers. The Doc has never treated this particular cancer. He is reaching out to colleagues in various areas to make sure we get multiple opinions. We liked how thorough he was and he was very attentive. There are 3 things they use to stage rectal cancer...1) How far is it into the wall? Steve's is all the way through the wall, but not growing onto other things on the other side. That is T3. 2) Is it in the Lymph system at all? His is in 1 lymph node. That is N-1. 3) Has it metastasized? (Spread?) His has not. That is M-0. So, all together that makes him Stage 3a. The treatment will be simultaneous chemotherapy and radiation. The idea is that the chemo attacks the fast growing cells and makes them weaker...then when the radiation hits, they will be more likely to die.

 He'll have a PET scan on Friday morning at 8am. That will be for 2 reasons. 1) To confirm that the cancer hasn't spread and 2) to confirm the site of origin. There's a chance the cancer originated somewhere else and moved to the rectum.

 Next Thursday we will meet with Dr. Clark, who is the radiation oncologist. Then, likely on Friday they'll place a port (implantable IV) and the following Monday (May 16th), he'll start chemo and radiation.

They will use 2 different chemo drugs. The first one is 5FU (Appropriately named...short for Fluorouracil). That will be a 96 hour infusion...basically M-F. Then, the next Monday he'll get mitomycin C. Then on day 29 he'll get 5FU for another 96 hours, then on day 36 he'll get mitomycin C again. He'll get radiation every day M-F for 7 weeks. The radiation will be short, but will be quite exhausting for him. The chemotherapy kills cells that grow fast...those cells include hair (hair loss will result), lining of the mouth and gut (sores and nausea are potentials), bone marrow (his immune system will be repressed), and platelets (they'll watch for bleeding issues). The chemo will damage the cancer cells and also, since it will travel through his system, it will hopefully kill any traveling cells looking for another place to make home. 

We anticipate Steve continuing on long term disability. After the 7 weeks they will wait 12 weeks for a follow up PET scan and colonoscopy. He will then have annual colonoscopies for a while. The goal of avoiding surgery is to avoid a colostomy bag. We will wash our hands a lot and try to avoid germs wherever possible. Steve's hair will likely fall out during week 3. He's very sad about that. I would be, too.

 We had more angels come today...some came to fix our sprinklers and did a hole for a tree that I've been wishing for, one offered dinners every Monday until June, one took us up into the mountains to forget our worries for a while, and one brought us dinner. We did get some really fantastic news today...Caitlin made student council for next year. She is really super excited. She also had her first track meet ....which some angels took her to....and Kenneth played in a soccer game against Lehi and they tied. Daniel, Kenneth and I are preparing a beautiful rendition of "I Am a Child of God" for Mother's Day. Kenneth is accompanying Daniel and I playing our violins. It's been nice to rehearse each evening and feel the Spirit of the song. We are children of God, and we are grateful for our Heavenly Father who watches over and blesses us. We are glad to have some idea about the treatment and we are so grateful for good doctors. We've enjoyed having Pat & Nancy here, and we'll miss them when they leave in the morning. Steve gained 3 pounds at his weigh in today and it's all due to Nancy's wonderful cooking (and yummy cakes!). I've really enjoyed her fabulous hot chocolate and their company.

Update

Steve has a very rare form of cancer that is the same as a skin cancer squamous cell in the rectum (.25% of rectal cancers). He goes in for a PET scan on Friday and then appt with radiation doc and port insertion next week. Then begins 7 weeks of chemotherapy and radiation treatment starting May 16th. Hopefully he will be able to avoid surgery because radiation and chemotherapy usually kill this kind of cancer. More details to come....

Tomorrow

Tomorrow life as we know it will shatter. We really focused on having a good day today. We spent the day with Pat & Nancy. We went to the tulip festival, to one of our favorite restaurants for lunch, then to Scheels to get some stuff for a family photo shoot planned for Friday. We ran kids around this afternoon and the leaders of our church congregation visited with us this evening and offered love and prayer.

Overwhelmed with Love...

Yesterday was a big day. Our entire church congregation learned of Steve's new diagnosis. It was so overwhelming to be surrounded by so much love. Every person I saw was empathetic and kind. Each person who was close enough to me gave me a hug and let me cry on their shoulder. We are SO blessed to be surrounded by such kind, loving people. Also last night, Steve's brother and his wife arrived. They have come to support us through this week. (2 of his sisters came on Fri/Sat). Then today we had 4 separate angels come to help us with various things. One angel came to look at a leaky shower, one ran a new circuit to my office so my house won't burn down (a constant worry I've had since expanding my home office), and two separate families brought multiple dinners. Oh - and another angel agreed to put together another musical number for our worship services next Sunday because she knew I couldn't do one more thing. Wow. Humbling. We're still feeling some anxiety as we wait for Wednesday to come, but we are trying to exercise faith in a loving God who watches over us. Yesterday evening my family (and a few friends) knelt in prayer at 4:45pm and exercised faith on Steve's behalf. I know God hears our prayers, and I know He'll be with us through this journey. My eyes have been more open to others in need...dear friends who are also facing health challenges, and personal struggles. My prayers also go up on their behalf. I know God will bless them as well. We will walk on this path with many angels by our sides. Thank you to each person reading this blog...for you are one of those angels. We appreciate you.

Steve....a crazy pancreatic journey...and more

"...This journey has been rough. It was so unexpected, and our lives just came to a screeching halt at 1:07am on Nov.1st (also Daniel’s 13th birthday). I feel so blessed to have been able to drop almost everything to be by Steve’s side in the hospital. We never thought it would last so long or be so scary, but it was both. He was diagnosed with pancreatitis on Nov 1st in ER. They told us to expect a “few days” in the hospital. The treatment was no food or drink by mouth and pain management. We got sent home Friday, Nov 6th. On Tuesday, Nov. 10th (Patrick’s birthday), we went to our normal doctor for a follow-up. Steve was still very very sick. He took blood and gave us some more medicine and sent us home. The next day at noon, when the doctor received the results of the blood test, he called us and said to drop everything and go straight to ER. There was something very wrong. After 5 hours in ER (not the same hospital he was the week before), they admitted Steve because his pancreas had ruptured. There was approximately a quart of enzymatic fluid in his abdominal cavity. The next morning the GI doc did an ERCP and inserted a stent into Steve’s pancreas. At that point we were told to wait for the body to surround the fluid with tissue (then they call it a pseudo cyst), at which point they would puncture the sac and drain the fluid. They expected about a 2 week wait. Well, Steve didn’t make it 2 weeks. The fluid became infected and he ran high fevers and was quite sick. They discovered necrosis of the pancreas (50% of his pancreas was dead) on Nov. 22nd. On Nov 23rd they transferred him to another hospital…this one in Provo (the hospital where I was born). On Nov 25th the doctor went in and attempted to drain the cyst and inserted 2 stents into Steve’s stomach. Even though he got quite a bit of yucky stuff out, the very next day (Thanksgiving), Steve started to run a fever again. The doctor went in AGAIN on the following Wednesday and repeated the procedure. After that, they were hoping to get him better and send him home. 2 days before he was supposed to go home, he developed a blood clot in his right calf. They kept him there until December 8th. I spent every night with him in the hospital. 34 nights. The recliner was very uncomfortable, but I was so glad to be with him and advocate for his care. The kids were troopers. On Nov. 18th, Caitlin broke her wrist. So…we had another obstacle. It would seem that we couldn’t catch a break, but really, there were so many miracles, I cannot hardly list them all. There were angels who brought us dinner and angels who helped with our kids, and angels who visited Steve in the hospital, and angels who prayed for us. I was never sick the entire time Steve was in the hospital. What a blessing. Anyway, on December 10th we went in to our regular doctor for another follow-up and Steve was really struggling. He sent us to ER and sure enough, Steve’s blood clot had broken free and traveled to his right lung. He now had multiple pulmonary embolisms on top of an infected cyst and 3 stents. He also had a lot of fluid around his left lung, and they drained 1200 cc’s before they sent us home. We’ve been back to ER 2 times since then – once because his blood thinners had thinned his blood WAY too much (it was seeping out his elbows), and once because he had a new super acute pain in his abdomen. The pain ended up being colon colic and the treatment was fairly straight-forward, but while we were there, they saw more fluid around his lung and his blood was below transfusion levels. He received a blood transfusion and they drained the fluid again. That was on January 14th. Last week was pretty good; he’s finally getting stronger. Yesterday was his first day that he didn’t need to be on oxygen. That’s a fantastic hurdle. He still needs it when he’s sleeping, but he can go all day without it. January 21st was the first day he slept with me in the bed. He’s lost 48 pounds. He’s super emaciated and he looks like he’s aged 10 years in 3 months. It breaks my heart. However, through it all we’ve focused on the blessings, and there have been many. This week he’ll get another CT scan and next Monday we go meet with the GI doc again. He’s going to go back in and remove the 3 stents…probably later next week. He told us to expect the procedure to be a set-back in Steve’s recovery. He also said Steve would likely take a year before he’s 100% again...." That is an excerpt of a letter I wrote to my Uncle Johnny in late January. Since then, Steve's had 4 more blood transfusions, 3 more endoscopic procedures, lost 12 more pounds, weaned himself off of the heavy duty pain killers, come off of oxygen completely, begun to heal and put back on 10 pounds. We were anticipating a gall bladder surgery, then a complete recovery and return to work. (Steve hasn't been to work since October). Well...on Wednesday, April 27th, our world shattered again when, after a colonoscopy, the doctor said Steve has stage 3 rectal cancer. We're waiting until next Wednesday to visit with the oncologist and get a treatment plan. We recognize that the entire pancreatic journey may be a blessing in disguise (that was quite a disguise!) because without the scans, they might never have found the cancer while it was still treatable. We are not blind to the blessings, and we're so grateful for tender mercies. I'll use this blog as a place to update anyone interested in following our journey. Thank you for you love and support. Joy

Fun day off

We went to visit Grandma Noble, now we are knocking around BYU.  Always a favorite spot to visit.

Sourdough

Daniel's Christmas performance

Mr. Brady Conducts 6th Grade Christmas Song: http://youtu.be/yWN9fgr9WPA

The best tattoo ever

Patrick wrote on me. :-)

Caitlin loves basketball!!

Daniel's first temple visit

Snuggle buddies

Caitlin and Hazel love to snuggle

Straight hair

My kids' reactions were hysterical.... Apparently it's been too long since I've straightened it.