Worst husband ever!

Well, I hate to admit it but it turns out that I am one of the worst husbands of all time.  I know there have been some bad ones throughout history... but today I realized I'm worse than I thought.

It all started with a Father and son's camp out.  I took my 2 youngest boys and we had a great time.  We took the boat and actually slept in the boat instead of setting up a tent.

A sleepy 8 year old.

We had a partial roof but could still see the stars. It was cool but  not cold and the night was very calm.  We made smores and even roasted some Starbursts over the fire. (Try it if you never have before.)  We had a great campfire discussion that included a joke telling contest.  There were probably 50 people around the fire and some of the jokes were pretty funny.   Wyatt yelled "I have a joke about a Mexican but it's not racist!" and that elicited more laughter than the joke itself did.

A 5 year old waking up

We pulled lots of kids around on a tube and had a few spills.  There were kids catching fish right and left (though I didn't catch any.)  And this morning the pancakes and bacon were excellent.












Anyway, I guess none of that explains why I am a bad husband, so here it is...  After I pulled the boat out of the garage, JaNae saw what a mess it was and cleaned the garage while I was gone...  So basically, I'm off boating and camping while my wife who just had surgery for cancer and is preparing for chemotherapy stayed home and cleaned the garage...  I feel kinda like a putz.

Today

Today has been a great day.  I have not felt this good.....in a month or so.  I am so happy to feel as if my body is going to be normal for a few more weeks.  The radiation oncologist suggested some medication to help with bowel spasms....and DANG!  after only 1 day I feel like a new woman.  It makes me so happy to think of a new normal that I can live and be happy with.

We are still missing Walker, but have had a fun and busy week.  The youngest 2 are loving swim lessons and we are enjoying normal summer freedom, time wasting and play.  We are making every moment count!  We played UNO tonight and caught Jeff cheating.  He parked himself on top of 2 cards that he swore he didn't know he was nesting on.  (Insert roll of the eyes here.)  We caught him red faced and handed, and made him pay with another stack of cards.  Later in the evening we were looking for something that was misplaced and Wyatt mentioned that it was probably under Dad's butt.  Jeff is hoping that he won't be the butt of jokes in our home for long.  I am just glad that someone else is taking that role from me.   

A sweet friend passed on some beautiful scarves and an adorable scarf hanger.  I was humbled by her kindness.  The thought of scarves and hats have been simmering in my brain, but I have shoved them to the back thinking I will cross that bridge when I get there.  I am pleased as punch to have a collection started.   I am not real keen on the whole thought of a wig.  Too granny-ish for my tastes.  When Jeff and I were first married we had a landlord that was a crazy-old-lady.  (A lot of emphasis on the crazy and old!)  She expected us to pay the rent in cash on the first day of every month.  We had to had deliver it to her home and 90% of the time she would answer the door with a gray wig on her head that was messy and sideways.  Halfway through our rent hand-off she would reach up and straighten it.  We would have to pretend to be admiring her flowers and yard gnomes while the adjustment took place.  It was awkward.....and I must say that it has ruined the thought of a wigs for me.  Plus I would like to not subject my sweet neighbors to the same torture.  My flowers are not as beautiful as hers. 

Last week I put my big girl panties on and called the salon that I frequent and made an appointment.  My hair is long enough to donate to Locks of Love....and I am happy to be able to give it up.  I think when it is time to wear scarves...short hair that is falling out will be better for my pschy than this long thick mop.  Hopefully when the hair I donate is made into a beautiful wig....it will fit a sweet head well and not need to be readjusted, and readjusted and readjusted, while onlookers admire gnomes. 

Tonight after baths, I was admiring my little collection thinking...I don't know what the "H" I am doing.  So I practiced on my kids.  They were unaware of my intentions.  Obviously.   Wes mentioned, that he was excited to play pirates when I tied it around his head.  And Wyatt the king of all quotes of the day, wondered if I had all of these scarves because I was turning into a Muslim.   Hold that Burka...I am a Mormon!   Many good discussions will follow.......

Love to you all,
JaNae

Radiation

Before discussing our meeting with the radiation oncologist, I just want to say a few things.  First off, thank you for all of the kind comments.  JaNae is a self proclaimed "comment junkie" and appreciates the support. Thanks for all of the food and treats (I've gained 5 pounds).  Thanks for the cards and gifts and everything you have done to help support my favorite girl.  It means so much to me to see the support you all give her.

The boredom jar

Second, thanks to my wonderful cousin who made a "boredom jar" for my kids.  It has all sorts of ideas on little cards and when bored they can pick something for a suggestion of an activity.  I will tell you that I suspect the kids are cherry picking the good ones and placing them near the top while the ones containing chores or activities that resemble work seem to go unpicked.  The other night I even slept in a tent in the back yard with them because of a card they picked. It was a great time and I'm sure the kids will remember it forever.  My daughter  noticed how the big dipper seems to rotate around Polaris and we even saw an owl.

Our cozy tent.
(The ducks now live in the creek behind the yard)

Next, I'd like to tell JaNae how much I enjoyed reading her post.  I admire her attitude and am so proud of the way she is handling this ordeal.  She has been a blessing in my life and I hope that I'm not too big of a thorn in her side. I'm thankful she trusts me enough to share this wild ride through life with her.  She has taught me so much... I mean besides long suffering... just kidding!








So we spent a few hours at the cancer center this morning.  We met the radiation oncologist for the first time today.  She was about an hour late because of an "emergency".  JaNae was worried about the kids so she went to call and check on them. The doctor, a nurse practitioner and a nurse came in while she was gone and asked me quite a few questions before JaNae made it back.  They were mostly about our kids, their ages and about how we discovered the cancer and what had been done thus far. I did feel a little ganged up on by all three of them firing questions at me. All that was missing was a bright light shining in my eyes... Luckily JaNae came back and took the pressure off of me. They started asking her some of the same things over, I assume to see if I was lying to them but luckily I had remembered all of our kids names and ages.

I just want to make note here that I was not excited about the thought of radiation despite the upbeat conversations I have had with 2 radiation oncologists, I just have a fear of it.   Drugs don't scare me.  I think maybe it is because though I have spent years studying pharmacology, I have little understanding or knowledge of radiation (other than that a radioactive spider bit Peter Parker and that gama radiation created the Hulk)... and we all know that we fear the unknown.  I had made some of my concerns known to JaNae, we talked about it and of course had heard horror stories of people who had undergone radiation. So with these fears and preconceived ideas, we met with the radiation oncologist...

The Doctor spent over an hour with us and talked about the radiation and the benefit it has on local recurrence rates.  She talked of the risks and when I asked her if she'd be scared to have radiation, she responded that with this cancer, she'd be more scared to not have it.  She talked about how she protects other organs from being in the radiation beam and how she cares for areas that get exposed.  She reiterated the things I had already heard and addressed some of our concerns without us even having to ask about them...

I kept looking over to JaNae to see what she was thinking...  because I had told her that I wasn't sure having radiation was a good idea.  I looked at her while the doctor was talking and I had a feeling of calmness come over me in a manner that I have seldom felt... and I knew... JaNae needs to have the radiation therapy... and she will tolerate it well.  I really wondered if she felt the same way and I worried that my earlier negative thoughts and feelings had influenced her.  I was worried that she didn't feel the peace I was feeling as the doctor explained things to us... but she did.  She felt the same feeling of peace and comfort.  We know what we need to do and we know that chemotherapy and radiation will not be easy but we will have no regrets because we are doing all we can to fight this cancer...

I'm still not happy about using oxaliplatin but I can see that it is the right thing to do also.  The doctors have been discussing the best way to treat her and I think they are going to do "sandwich therapy" meaning 3 months of chemotherapy, 6 weeks of radiation and then 3 more months of chemo.  This process will start on July 9th.  We'll keep everyone posted of the progress.
Good night all.
-Jeff

JaNae here....

Thought I'd make Jeff pass out today by posting.  He has done a great job with this little blog.  I believe that it has been a great outlet for him.   I appreciate him and the huge support that he is to me.  He is a great husband and an amazing father, and we are so lucky to have him.  What a great Father's Day we have shared with him.  The kids have spoiled and mugged him and let him know that they love him more than life itself.  We have however missed our oldest as he has been galavanting with friends in our loved Pocatello. 

This little situation that has recently presented itself to us has been trying.  And when it comes down to it, seriously violating.  Colo-rectal cancer is literally a pain in my butt.  I AM seriously thankful for the amazing care that I have received, but when it comes down to it, this little lady has been violated.  I honestly would have felt less violated taking my underwear drawer to Wal-mart during the Christmas season and have all of the "special" patrons rummage through it.  

This is the man that has done most...ok,all of the damage... and he totally rocks.  

(This picture of him cracks me up!)

(Add you own witty caption here....)

 He has a great sense of humor (he is totally hilarious)  and has the perfect combination of  respect for his patients that pairs with a mountain of knowledge that he communicates effectively to even one such as I.

I think because of his chosen profession he may just go straight to heaven.
 We have not seen the end (no pun intended) of each other yet, as the road ahead of me is still lengthy, but I am appreciative of him and his sweet surgeon skills.  My recovery thus far after the surgery has been as good as expected and I am feeling well.  I am so thankful of the improvements that have come my way in the last few weeks.  I am still cautious of over doing it but feel confident that progress will still be made.  I had an appointment with Dr. Olson on Friday.  Jeff had to work, so I went alone, which was foreign, but fine.  He mentioned that things were good, and that I will be able to look forward to just one more appointment with  him before we start Chemotherapy.
He also mentioned that I could start using Mederma on some of the scars on my abdomen.  I have laughed to myself...I don't think that a load of Mederma the size of Rhode Island, would help this baby stretched abdomen...but that is the least of my worries.    

This week I feel like reality is sinking in.  Some days I feel strong and ready to fight this with Ninja like powers, and then other days I am emotional and overwhelmed.  The pain that I have experienced is changing from being physical to emotional.  And I am not sure what feels worse.  The last few mornings I have woken in a cold sweat, worried and anxious about what I will face.  I am worried about holding things together for my children and spouse.  I am worried about being strong enough.  I am worried about the physical ramifications that this treatment will have on my body long term.  I am worried about how my children will survive especially as school starts in the fall.  I am worried about Jeff trying to juggle everything on his huge platter of a plate, with a sick wife at home.  And selfishly now, I am worried about looking like a hideous beast without hair.   

I know life for this season, will be challenging but it will be a time of growth for all of us.  And I am thankful that I am not alone.  I have felt so much love and support by family, friends and friends that feel like family.  I am in awe of the kindness that have been shared with our family.  Whether it be a delicious meal or treat, flowers or sweet messages via, mail, facebook or email.  I truly feel blessed and humbled....I truly am blessed.

One morning this week, Jeff called me from work to check on me and the children.  I discussed the emotional anguish that is residing in my chest with him.  He shared something with me that I will never forget and that was heaven sent in helping me cope with the day.  I am positive that it will continue to help me cope with my health issues from now until the end of time.
"JaNae, you need to replace the fear and anxiety with gratitude.
They can not both exist in your mind at the same time."
And that my friends, has been my saving grace this week.  I am grateful.  I have an amazing life. I have amazing parents.  I have amazing children.  I have an amazing spouse.  And most importantly, I have an amazing knowledge or my Savior.  Of His plan of happiness here upon this earth.  I know that I am not alone, and that with Him and through the power of the atonement I will be able get through this trial. 
Later that day, with timing that was impeccable, a package that was mailed to me from Washington arrived on my porch.  My sweet sister-in-law's Mother sent me a beautiful picture of the Savior with a favorite scripture, that I will hold dear. 

"Peace I leave with you, my peace I give unto you:  not as the world giveth, giveth I unto you.  Let not your heart be troubled, neither let it be aftraid."  St John 14:27

I am grateful for the opportunities that are given to us to help us grow.  Opportunities that shape us into becoming the person that He knows that we can be.  This is a shaping moment for me, and my family.  And how thankful I am for the peace, love and gratitude in my heart that will guide me through.

Here we go...

The reality of the situation has been sinking in slowly...
We have used every defense from humor to denial to help us cope with the hand we have been dealt.
Meeting with the oncologist was a big reality check and we have been feeling raw and anxious since.  When you read in a book that someone feels like they have been punched in the gut, that is exactly what it feels like. It hurts and is a nagging ache that does not easily go away.

I had been researching all of the possible treatments for her cancer at her diagnosed stage. I had planned in my mind what chemotherapy I'd like her to have and anticipated the side effects we would face together. I felt the best approach would be to balance efficacy and toxicity and choose medications that were more gentle.  I pulled dozens of studies comparing the treatment options available and tried to think through the consequences of each one.  Pharmacy school trained me well in understanding these studies and interpreting the results so they can  be used in real life situations.  But neither pharmacy nor PA school prepared me for the emotional turmoil of trying to relate these studies to our situation...  to decipher the data and use it to save my wife.

I was surprised when the oncologist told us that she wanted to be as aggressive as possible despite the side effects and toxicity.  She wants to put a port into JaNae's chest through which we will willingly infuse poison every 2 weeks for 6 months...  JaNae will likely lose her hair...  She will be sick... She will be more tired than she has ever been...  Her immune system will be shocked by the chemotherapy to where she will not even be allowed to hug the kids in her Primary class...  She may lose feeling in her hands and feet permanently...  And after all of this... we meet with a radiation oncologist next week to decide whether to use radiation as well.

She will be on oxaliplatin, leucovorin, and 5 fluorouracil. All of these are pretty standard but some people don't have to take the oxaliplatin... and she wants to use aggressive doses with JaNae.  She will take other  medications to help with nausea and other side effects.  She'll have a surgical procedure on July 5th to place the port in her chest and start chemotherapy July 9th.

Like I said, after all of my reading I was very surprised by how aggressive the doctor wants to be with the treatment of this cancer...  but then she looked at me as if she knew what I was thinking and said "We HAVE to be offensive and use every weapon we have to get ahead of this cancer because once it gets away from us, it is very hard to stop... and you have a five year old at home who needs his mother. It's my job to save her for him... It's your job to be a supportive husband."

Getting ready for the oncologist

JaNae is doing well and recovering from surgery. She is moving better every day and feeling more like herself. She even let me take her out on a little date but gets sore quickly if she does too much.  The 3 youngest kids have been off with cousins and are coming home today. They have had a great time and I'm sure they have probably been spoiled.  A few days ago our youngest told JaNae that he wants to come home just for a visit and then go back with cousins.  Last night he announced that he was home sick and she's so glad he wants to come home.

Walker has been a big help to us and has taken good care of his mom.  He had his 13th birthday and told us it was one of his best birthdays ever... even though his presents were sloppily wrapped in Christmas paper.  We have had some great one on one time with him.  It's been amazing how much cleaner the house stays with only 3 of us here. We have been so thankful for the support of friends and family as we go through this.  People keep calling and asking what they can do for us.  Right now we are doing great and are mostly OK.  As treatment starts, things may be different but today we are happy and feeling pretty good.

Monday, we meet the first of two oncologists.  When we first found out the cancer had spread to a lymph node, we were quite deflated and had a lot of anxiety about going through the next steps of treatment.  Luckily, an old friend of mine married a great guy who just happens to be a radiation oncologist.  She suggested I call him.  I did and he was very helpful in answering questions we had and alleviated some of my main concerns.  I feel a lot better about seeing our local oncologist because I kind of know what to expect and have been thinking of more questions I want to ask.

I haven't been writing as much recently because there really hasn't been any news...  The ducks are growing and we moved their stinky pen out of the yard. JaNae would have liked me to put them in the neighbor's yard but I put them behind our fence next to the creek. I'll open the gate to the pen and let them come and go as they wish.  (More emphasis on the go.)  We just don't want them to sit on our back patio.  Walker got a blow gun for his birthday (once again, mom was sick so dad did the shopping.) and she has given him permission to guard the patio with it.  I mentioned that next year we should only get two ducks and I got a pretty good dose of "stink eye".  I wonder if her "stink eye" look is similar to getting radiation because I felt a few pre-cancerous cells die off when she looked at me like that. (So maybe we'll just get one.)

-Jeff

I think I killed my bonsai tree...

This is what happens when your wife is sick and you neglect your tree...
(It's a good thing the kids are off staying with cousins... Thanks for keeping them alive and safe.)

How do you be supportive?

I've noticed a lot of views on this blog, in fact we are up to almost 3500 page views.  Most of them are from family, friends or acquaintances though I suspect some have passed it on to people we don't really know.  I've really tried to portray us as we really are on here.  I have even had some posts vetoed because they were a little too raw.  (I've just been trying to say it as it is.)  My mood has been so heavy today after yesterday's news that I considered not even writing tonight.  I have been researching... thinking... researching more... and pondering over the changes that are coming to our lives.   (A little bit of medical knowledge can be a dangerous thing and reading about cancer is so very frightening). I keep asking myself how can I be supportive of JaNae as she goes through this?  What can I do to really make a difference and help her?

I know there are likely some of you asking the same questions whether about us or others going through hard times.  I know that every family has it's trials and we are not alone in facing difficult things... but sometimes we feel alone.  Everyone handles difficult situations in their own unique ways... our doctor told us that if we drink, it would be a good day for a martini (we don't).  Our son goes for a bike ride around the neighborhood every time he is overwhelmed with stress... JaNae's dad goes hiking in the desert.  I read a book read or read stuff online... or go to my man cave...  JaNae gets stress relief from sewing. When people I know had something really bad going on, it's been tempting to pull away and ignore it... just pretend the situation really isn't there.  I've done that myself at times...

I was talking with JaNae earlier today and she told me that in her wildest dreams she did not ever imagine that she'd be fighting cancer at age 35.  Honestly, neither did I.  I'm not sure that I know how to really be the support that she needs me to be, we've never faced anything this big or scary.  What exactly is a husband's job when something like this happens?

We are spiritual people with faith and a support system of family, friends and church.  We believe that there is a Father in Heaven who has a plan for us.  And that the purpose of this life is to have experiences that help us grow and develop spiritual attributes that prepare us to live with Him again.  JaNae actually told me that she feels bad that she has to go through this experience because it implies that she has things to learn.  I've said before that when it comes to being a good person, JaNae is 10 times the person that I am...  10 times better than me!  So part of me wonders if the reason she is going through  this is so I can learn how to be the support she needs me to be...  and here I am selfishly wondering if I'll ever get my wife back.  She's the best friend I have ever had and being married to her has made me a better man. As I contemplate these things I realize the answer. It is very plain. The old JaNae will not be coming back... ever. When all of this is done and over, I'll be left with someone even better. That's what I have to look forward to.  Thanks for your continued support and prayers. -Jeff

#@!!%!.....#@!!%!.....#@!!%! (insert your favorite swear word here.)

We had an appointment today with the surgeon.  He pulled out the JP drain and was kind of funny about it.  He told JaNae to brace herself and he'd pull it out on the count of three... Then he yelled "3!" and gave it a sharp yank.  Out it came with only a small yelp of pain from JaNae.  He told us she was doing well and healing wonderfully...  but he had some "not so great news."   There was cancer in one of her lymph nodes.  (Only one out of 28 nodes had cancer.) This classifies it as metastatic and puts her at a Stage IIIa.  ...My wife has metastatic colorectal cancer... In other words we will be meeting with two different oncologists to discuss radiation and chemotherapy. We were so hoping that surgery would be all that was needed and spent the day feeling heavy hearted about it.  The thought of radiation and chemotherapy is overwhelming.  I think we even cussed a few times (but I don't remember for sure...  it's all a blur.)

On a lighter note, I got her a few shirts to wear around town.  Here are the kids modeling them for us... Do you get it?