Home at Last

I did not do a very good job of communicating this week.  I feel like I need to catch a lot of you up on what has happened since Monday.  It's been crazy.

Monday night Marc started having really terrible pains in his abdomen and back.  He woke me up at 1:00 after struggling for several hours, wanting to go to the hospital.  We got to the hospital emergency room and the pain continued.  He was scheduled for a CT scan.  After drinking the half gallon of contrast, he threw it all up.    He did have the scan, though, and they found a blockage in his small intestine.  Not good.  A team of doctors met and discussed his options.  They decided surgery wasn't a good option because so much tumor encases his small intestine.  It would be a complicated operation and his recovery would be difficult.  They opted to put a tube down his nose into his stomach to drain the fluids that accumulated -- in essence giving his GI tract a chance to rest and resolve the blockage on its own.  If that didn't work we would explore the surgery option again.

Monday afternoon he was moved to the oncology ward.  He was able to get some relief.  The pain and abdominal swelling decreased.  His digestive system started making noise again.  All good signs.  Wednesday afternoon he had the tube removed and started a liquid diet.  All went well.  By Thursday morning he was on solids and was released in the afternoon.

We are home now; however, it doesn't mean that this is all behind us.  Here are the obstacles we are facing right now.

• The CT scan showed progression of the disease.
• Because the tumor has grown, the area that is constricted  may only become more constricted, resulting in another blocked intestine.
• His red blood cell count has been down.  He received four units of blood without a huge bump in numbers.  We don't know why this is happening.
• Because his red blood cell count is down his energy is low.  Fatigue is frustrating to him.
• He has lost a great deal of weight.  We are working with the dietitian to get his calories up; however, with the threat of blockage, we have to be careful that he doesn't eat too much in one sitting.  Frustrating!
• Marc is faced with deciding if he will do another round of chemo next week.  His body is in a weakened state and the chemo will only make him weaker.  He needs to decide if it is worth it.
• He is continuing with the nutritional therapy with some modifications.  Hopefully we will see some positive results from this soon.

For those of you that we were able to update, thank you for your prayers and support.  I apologize I didn't update here sooner.  It's hard for me to be present for Marc and for the kids in this type of situation.  I feel torn and am scrambling every minute when he is in the hospital.  My little family needs to be my focus and I can't always find the time to update the blog or make phone calls.  I hope you all understand.

I want to thank my mom and dad for taking on the kids and their schedule this week.  It's brutal being pulled out of bed in the middle of the night to take care of four children.  They did an awesome job of keeping the house up and getting the kids to school.  I also want to thank Melanie, Jess, and Jani, for coming up to visit me and take me to dinner. It was a nice break. Thank you, Susan, Steve, Elo, Dave and Karen, for coming up to sit with Marc.  It gets boring and lonely up there!  We are so grateful to all of you that made the trip up the hill.  We appreciate it.

A humorous side note....We did manage to find adventure while up at OHSU.  Marc was feeling antsy and bored so we got permission Wednesday night to leave the floor and take a walk.  We ambled throughout the hospital, towing his IV pole.  On floor nine there is a very cool veranda that overlooks the city and river.  It's a gorgeous unobstructed view.  The night wasn't rainy or too cold, so I suggested we go out so he could get some fresh air and enjoy the view.  When we decided to come back in we found that we were locked out.  Who knew the doors automatically lock at 9:00?  Hmmm.  Locked out of the hospital.  Funny.  Marc didn't think it was too humorous at the time.  I was just starting to have a panic attack when a man walked by on his way to the garage.  After banging on the windows I got his attention and he was kind enough to backtrack and let us in.  We escaped a little chilly and most embarrassed.  Gotta keep it memorable, right!?!

Chemo Vacation

If you know me at all, you know I like to cook.  My favorite is baking, though.  I love making desserts, especially pastry.   I come from a long line of bakers -- my grandmother, my mom, and the ultimate baking rock-star...Aunt Jeanette.  While I have yet to reach Jeanette caliber, I am usually pretty pleased with my results. 

One of the things I think I have finally mastered is pie.  Marc and the kids love it as much as I do.  While we have been on our chemo vacation, though, Marc has decided to try a really strict nutritional therapy.  Chemo hasn't solved our problem, so we are exploring alternative cures.  There are many things he now cannot eat, one of which is gluten.   Food is the love language of our family. So, of course, when I make dessert I don't want to exclude Marc.  Ever tried making pie crust, much less any other baked good, without gluten?  My friend, Elo, warned me that often times the result is a crumbly mess.  That was an understatement.  Today as I tried to "roll" out my gluten free sorghum pie crust, I found that it was akin to trying to roll out sand (and, yes, I used the xantham gum).  I was determined, though, and managed to fashion something that vaguely resembled a pie crust. 

After baking, I removed the masterpiece from the oven.  My results are pictured below.  I am embarrassed.   Technically it is pie.  There are two crusts, between which are a bunch of blackberries.  I think this a huge waste of good Oregon blackberries....What do you think?  Marc and I both sampled the creation.  Imagine blackberry filling, sandwiched between what tastes like bland Wheat Thins.  Yum.

My Ugly Crumbly Mess

The usual yummy-white flour,-hydrogenated oil- sugar sprinkled version. 

Again, if you know me at all, you also know I can be quite stubborn (I prefer the word determined).  I am now on a mission to create a pastry that my husband can eat that tastes good and looks edible.  Normally I would experiment until I found the perfect combination; however, I'm maturing a bit.  I'm a bit limited on time and energy these days.   Going to ask for help here.  Does anybody out there have the secret to gluten free pastry and other baked goods?  If you have any recipes for the following and you wouldn't mind sharing, please let me know.

• Pie crust
• Pizza dough
• Sandwich Bread
• Cakes, muffins, scones

I know Bob's Red Mill has a ton of recipes and they are local to us.  The problem is there is almost too many recipes to choose from.  Each one calls for different ingredients.  Which recipes are the best?  Do you have any favorites that you would recommend?  I look forward to hearing your comments!

With love and gratitude......

Happy Birthday, Marc!

Happy Birthday, Marc! I want you to know how much you are loved and celebrated every single day. You are one very amazing guy. Thank you for the strength and grace you reflect in your life. Thank you for your faith. Thanks for being my husband and a great dad to our kids. Your life is a blessing to so many!

Enjoy your special day, Sweetie.....

With all my love....Jane

Still Waiting for Our Miracle

Thank you all for praying for us this week.  Marc had his CT scan on Monday and we received the results yesterday.  Basically, the tumor has not changed.  It's not growing and seems stable at the moment.  The good news is that the fluid in his abdomen is much reduced since his last scan.  The bad news is that the tumor isn't shrinking.  We had hoped that the current regimen he is on would make the tumor shrink away from critical areas so that he could have surgery.  It doesn't appear that this chemotherapy can do that.

Marc and the doctor made the decision to discontinue his current regimen.  While it is keeping the tumor from growing, it has horrible side effects.  Marc doesn't feel he can tolerate any additional rounds of this treatment.  So, he is taking a break.  We are scheduled to return to the clinic June 2nd to re-start the chemotherapy he was on in round one a year ago.  They have had some success in reintroducing it and getting responses in other patients.  Marc also tolerates that chemo better and his quality of life should improve. 

While we are frustrated, we are okay.  We still cling to the hope that God will answer our prayers.  It's the waiting for the miracle that is a true test of faith!  I know it will be worth the wait!

The Gift of Courage: My mom

Her children rise up and call her blessed;

Her husband also, and he praises her.

Proverbs 31:28

I am privileged to know some pretty amazing moms.  I have some close friends that are in the middle of raising up their kids that inspire me daily.   These are gals I can share my parenting struggles with and know that they understand.  We are able to laugh at ourselves and share our frustrations.   I also know some seasoned moms that unknowingly mentor me -- their kids are grown and they have wonderful kernels of wisdom to share.  I love all these women, but the mom dearest to me is my own.

My mom and I are very different.  Our tastes and personalities are nothing alike on many levels.  Mom decorates in pastels and loves wallpaper.  I'm more of a bright and bold color person and couldn't hang a sheet of wallpaper if I had to.  Mom likes knick-knacks.  Me...not so much.  Mom follows recipes exactly when she is cooking.  She is also methodical and tidy when she cooks.  I am a disaster in the kitchen and in my mind recipes are a general guidelines that require constant modifications (usually because I have spaced something on my grocery list and have to substitute an ingredient).  Mom would never eat raw cookie dough, overstuff her washing machine, or rush through anything.  I do all of the above...all the time.  Mom is not a big fan of pets or livestock.  I would be sad not to have my dog, horses, and other farm animals.  No, Mom and I don't share the same tastes in many things, but we do have things we enjoy together.  Mom taught me to love books, an intense game of Scrabble, old movies, and a good cup of tea.  She loves flowers, a nice garden, and relaxed visits with those that she loves.   She instilled in me the joy of tradition, keeping holidays, and making others feel important.  In Mom's world everyone else comes first.  I try to remember that every single day.

My mom is a quiet, unobtrusive person.  She is small in stature and would never command the attention in a room.  One might be tempted to think she is simple and timid.  I know better.  I have watched my mom my entire life, and while she is humble in spirit, there is nothing timid about her.  If I had to sum up my mom in a word it would be this:  Courageous.  My mom's courage over the years has inspired me greatly.  Mom is all about making hard choices when the world would offer her every excuse to do the opposite.  

I have watched my mom and my dad stay married for almost 44 years.  Together they faced some major tragedies -- tragedies that would have ripped other marriages apart.  Mom has always stood by my dad.  There were times they were financially devastated.  Mom stayed and gracefully made do with what she had.  In a single year she watched her firstborn son pass away and then her father.   Her heart was surely broken, but she found the courage to embrace life and find joy again.  Her faith was never shaken.  She helped my dad start a successful business and run it efficiently.  She has always been my dad's helpmate.  I have watched my mom deal with her own health issues.   Diagnosed with a debilitating heart disease, Mom was courageous enough to fight back and regain her health despite the odds.  She was frightened, but she didn't complain.  In recent years I have watched her support her son through addiction and recovery.  She never gave up on him.  I watched as she helped her mother-in-law battle pancreatic cancer.  She was there with Grandma night and day, providing her with care and dignity.  When Marc was diagnosed a year ago, she was right there.  She has mopped up my tears, sat in the waiting rooms with me, helped countless days with the kids, provided meals for us, and encouraged us every step of the way.  I have spent cherished time listening to her encouraging words over gallons of tea. 

As I have watched my mom over the years, I have learned a lot.  She has been a consistent example of what it is to be a godly woman.  Through every trial, loss, and tribulation, my mom's faith has stood rock solid.  She is on her knees daily.  I know she prays for me, for my husband, and my kids throughout the day.   On any given day I can walk into the house and her well worn Bible will be sitting open at the dining room table as it has been since I was little.  She loves the Lord.  She has leaned on Him with all her might over all these years.  She has shown me through her trust in Him that He is faithful.  He has given her strength to love a daughter that she probably didn't always identify with.  Despite the fact we are so different, she has always supported me and celebrated me.  Her love has been a gift.   He also gave her the courage to laugh and find joy after her heart was broken.  I lean on the knowledge that God does heal the brokenhearted.  She has shown me that truth by living it out in her life.   He has given her tremendous wisdom through so many experiences.  In recent years I have learned that Mom really does know what she is talking about.  Go figure!  He has given her peace when it would be easier to worry.  He gave her trust and love in her marriage for all these years.  He gave her contentment and fulfillment as a mother in her home.  She is an amazing testament of God's faithfulness. 

I am blessed so much by my mom.  I am grateful for her love, her example, and her courage.  Someday... when I grow up... I hope I can be something like her.

Mom...with love and gratitude...

Quick Praise

Sorry we have been absent here for awhile.  I just wanted to give you all a quick update on Marc.  These are big praises in our world!

• Ascites (fluid in his abdomen) has not returned
• Less fatigue
• Less pain
• No skin sensitivity
• No headaches
• Increased appetite
• Slight weight gain
• No discomfort when breathing (blood clot appears to be gone)

Thank you all for your constant prayers.  I have learned recently that folks have been praying specifically for us.  We can tell!  Thank you. 

Marc has his next CT scan this coming Monday.  Results will be on Wednesday morning.  We will update here when we are able. 

Have a great weekend!

With love and gratitude....