Thursday, June 27, 2013

Long awaited update...

As much as I would like to write some clever prose today, I can't.  I have had a hard time updating this blog because life is crazy, busy and very stressful.  I'm not going to allude to any medical updates with Aaron, because he will be going in for PET scan next week.  This will tell us if we have only 2 months left or another road of treatment.  If it comes back that all the cancer cells are dead then we are on the road to being done in August.  Please keep us in your thoughts and prayers.  It's hard not knowing and the emotional and psychological parts have been really difficult.  I am physically drained and emotionally done.  Things seem to be working finally, but the PET scan will be able to tell us everything we've been wanting confirmed for the last 6 months...  is there a light at the end of the tunnel or do we still have a long journey ahead?  That's the question right now and we are waiting for some positive results.

Cheers!  Here's a few pictures, just to make this short blog a little more interesting. 

Camden is going through a Zombie phase.  I promise I don't let him watch zombie movies.  I don't know where he gets it from.  :)
The most AWESOME hot wheels track money can't buy. 

 Happy Anniversary!  14 years!  And yes if you look in the background that is our son.  We took both of them out for our Anniversary.  :)  Babysitters are hard to come by in the middle of the week.

 What man... I mean boy doesn't love construction equipment.

  I love that Brody is always looking up.  He loves airplanes.
It's amazing because when I look at these pictures I don't see the disease, and I'm sure you don't either.  But I heard this saying somewhere... you don't always know what's behind the smile.  It's true!  But it's always good to spread a little joy whenever possible.
(Okay just one update!  These are very recent pictures and if you notice, Aaron is not bald.  The craziest thing happened.  Just about a month ago his hair started growing back.  And now he's starting to lose a little where he doesn't really want it.  :)  Happy Day for him!  Maybe he does get his Brad Pit hair.)

Wednesday, March 20, 2013

But on you will go..

"But on you will go
though the weather be foul...
Onward up many frightening creek,
though your arms may get sore
and your sneakers may leak."
                                                ~Dr. Seuss

It's been a few weeks since I updated last, and up until this point I haven't felt a lot of motivation.  My arms are sore and my sneakers are leaking, but before I get into that, I will give you a quick update since it has been so long.


Aaron just had his 3rd treatment last Thursday, and it was a week over due.  Our schedule has changed and I definitely see how this thing can drag on.  If things go without a hitch, Aaron could have been done with his treatments by July, but now it looks like August and if he gets sick, it could even be longer.

I am still amazed at the entire process and all the side effects.  It really feels like he is getting a small taste of what it was like to have a baby.  Nausea, exhaustion, hair loss (like after the baby), body aches and pains, breathing, uncomfortable, trouble sleeping, and swelling.  We joke that he is giving birth to a tumor.  He has also named them, Massy and Tumy.  So I guess it's twins.  Only fraternal, though.

To be honest I think I could do with out the sympathy.  I am glad to bear the memories and scars that come from having a baby.  I don't like having to watch my husbands body fall apart from this illness.

Aaron officially started loosing his hair the day of his second treatment.    That was a really hard day for him, surprisingly.  I would have thought after all these years of complaining about being hairy he would enjoy the break.  :)  I am sort of relieved as well, because now we find more of his hair in the house than we do mine.  On a walk over a week ago, he mentioned how other people who lose their hair have 10 years to get used to it, but he only gets a couple of weeks.  I reminded him that they don't get to look forward to having theirs back. He said true, and was hoping for Brad Pit hair.  I hope so too, as long as it makes him happy.

The picture above is our shower floor, a few days after his second treatment when it started coming out in clumps.  His hair has definitely thinned out, but when others see him they say they don't even notice.  (I think now they do.)  Below are the stages of hair loss so far.  Tonight we are going to buzz his hair.  I also have a little surprise for him after.  (I will post tomorrow.)

Before treatments began.
After the hair started falling out in the shower.

Same day.  After a hair cut.

A few days later, plus a top view.

3/16/2013.  Not too bad.  See below. (on a side note he doesn't have to shave his face as much
and it's a lot smoother as well.)  :)

Top View.  I think it's more obvious. And yes those are Homer jammies!
He is officially a hat boy.  Especially when he goes to bed.  It keeps the hair in his hat from spreading all over the house.  I think he shouldn't worry about it, because I have never tried to contain my hair when it falls out.  But I know it makes him feel better.

On Aaron's second treatment his white blood cell count had been diminished by 80% so the doctors had to give him a shot to help build his cell count.  We call this shot "liquid gold"  literally.  It is about $6000 for 6 ml.  (My kids take more Tylenol than that, and Tylenol is only $7 a bottle.) I don't think we have ever paid that much for any small item including our wedding rings.

The side effects from this shot, made his recovery harder than his first treatment.  He had more nausea, more bad days, and the shot created extreme pain in his bones.  He said he was on a conference call meeting and fortunately his phone was muted, because when it hit him he yelled.  He said it felt like his hips were being pulled back and spread apart.  (Hmmm... sounds a little like pregnancy.) 
That brings us to his third treatment and the delay.  There are blessings and downsides to having the his treatment delayed.  But before we go into that, here is the back story.

About a week before his 3rd treatment, he started to develop these boils on his skin and he got a little bit of a cold. At his appointment, his doctor looked at his boil on his leg and said, "it looks pretty angry." (I love that line. LOL) So she said that because he has a lot going on and because he has an "angry boil" that we were going to post pone his treatment a week.  In most people, an "angry boil" doesn't sound so bad, but when the immune system is compromised, it can be deadly.  So she put him on antibiotics and it took a few days for the anger to settle down and he resumed his 3rd treatment 1 week later.

So the downside is that it extends how long we will be doing treatments.  Same amount of treatments, however, instead of being done in July, we are looking at August. (As long as there are no more hiccups.)  The blessing because of the delay, his white blood cell count was through the roof.  It was higher than even a normal range.  HURRAY!!!!! He didn't have to have "liquid gold" this time. 

At the same appointment, his doctor felt pretty confident in lowering his Prednizone dose that he's been taking for over a month and within 24 hours his neck and face started to swell again.   As mentioned before Aaron has VCS(Vena Cava Syndrome).  The Prednizone helps with the inflammation and allows more blood flow, along with that he takes a water pill and blood thinners as part of his treatment because of the swelling and blood clot(s).

He talked to his doctor last Monday and she said that she wanted to see him again soon, because she was concerned.  Usually, doctors don't get concerned they usually ask if you're concerned and determine whether it is necessary for a visit based on your concern.  I don't know what it means, but Aaron suspects it could be more clots.  Lymphoma is a nasty disease.  It can make your blood really sticky and therefore cause more blood clots. Since Aaron is still having the swelling symptoms, his doctor moved his PET scan up 2 months so that she can see if things are progressing. Aaron went into his PFT -a lung/breathing function test - appointment today and hopefully we will find out positive results tomorrow. (He feels good about it.) 

Sometimes this is really hard to deal with and sometimes we are given small successes to help us keep going.  Last week was very hard and emotional.  Not only am I dealing with my husband's illness, but it seems like on the good weeks everyone is sick and so we are not getting a lot of relief.  It's killing me!  Lately, I feel like my spiritual cup is empty and my soul is numb.  I have felt like my relationship with my husband, family and God have been strained as well.  I feel like I need to make some changes in how I am managing this challenge but have felt at a loss until I was reminded of Aaron's Cancer buddy.

He was a doctor just a couple of years older than Aaron, who was diagnosed with the same disease last year.  His wife dealt with the circumstances by maintaining a very structured, ordered schedule. The thought crossed my head that maybe I need to add more structure and order to my life.  Maybe that could help me pull out of this funk.

So I have started adding activities into the boys and my life.  I have gotten creative on how to achieve some of these things, since money is really tight, and I think it is helping.  I have also made more of an effort to connect with God so that I have a place where I can turn.  I believe that since I have been trying these things Aaron and I have started to connect again as well.  This disease doesn't just effect the health of my best friend it effects everything we are doing.  It is a lot harder than I anticipated.

God really has been listening to my prayers.  I have asked for help to get me out of this dark place and I have tried to do my part by searching for the answers through reading the scriptures and prayer.  I have also opened up to my husband about my struggle and talking to him helps me to see outside myself instead of always curling up inside.  I have to admit the biggest revelation, with my struggle, came to me over this last weekend.

While I was looking for a story to tell my kids, I came across this unauthored web page of stories of people who remember our life in heaven before we came to earth.  The author had a vision about our lives before we came to Earth, and went into detail about his/her experience there.  They talked about how important love was and Christ and that we all came here knowing and choosing some of the challenges and weaknesses we face.  Some came here to not live very long in order to help others achieve what they were meant to achieve.  And others lived longer to help provide service to those along the way.  Some would come handicapped and others would end up homeless, but all with a purpose to allow others an opportunity to help or be better (To serve each other).  We all came here excited to experience this life and go through the challenges that were arranged for us.  We were also given tools from Heavenly Father to help us in this life, to help us overcome our weaknesses but it is up to us to use them or not use them.  It is our choice.  This life has a great purpose in providing us an education that we could have in no other way obtained.  We are intentionally brought here without our memories of our lives before and we are given tests and trials to gain experience and knowledge.  These are things that I believe in, through my own study, prayer and pondering on things that I learn from the scriptures and church.  But this article reminded me of what I was forgetting.

Then, later that weekend, I was listening to a talk from someone in my church and they relayed a story about a couple.  Six weeks after they were married, they were informed that the husband had bone cancer and his odds of beating it were not good.  When a member of their congregation talked to them he felt impressed to ask them if they had faith in Christ and in Heavenly Father's plan and if they had faith not to be healed.  Usually, in circumstances like this it is customary to ask if they have faith to be healed, but the speaker said he felt impressed to ask if he had faith not to be healed.  He went on to talk to them about that, which meant that the couple had to trust that God was in control and he knows what is best for each of us.  The husband did survive but it taught them a very valuable lesson.
The story struck me really hard, because in my prayers I had been asking God to save my husband for my very young children; to allow them the opportunity to know their father.  I didn't want God to take Aaron even if it was part of his plan, that I felt an injustice to my boys if Aaron could not help me raise them.  I realize after this weekend, I lost my faith in the things I believed.  That is where my emptiness comes from.  I realize that I need to trust that God knows what is best for all of us and those things we need, to help us achieve all that he wants us to achieve and all that we can achieve.  Just like in the article, how do I know that Aaron's life isn't meant to be short, that it wouldn't help myself or my boys to be something more or even help someone else.  Now let me preface this by saying I don't believe he is going to die and I don't believe it is part of Heavenly Father's plan for our family.  Although it could be, because I don't know his plan for us, but I don't believe it is.  However, I do believe this challenge was part of my test. And I believe it is teaching me to trust in Heavenly Father's plan and know that no matter what happens in this life it is to either help us be better or help others be better and maybe a little of both. While I was sitting quietly on the computer the other day, my oldest son (4 years old) said, out of the blue,"Mommy!  Daddy's not going to die."  I asked him why he said that.  I have tried to keep those feelings from being said or mentioned around my boys.  I think maybe he has sensed my worry.  But when he said it I felt a little bit of joy, my hope is that maybe it was a message from God to bring me relief.  I like to believe that God knew my concerns and to hear from my child, out of the blue, gave me what I needed to lift this burden of darkness that has surrounded my life these past few weeks.  And even though this journey is long from being over, I am sure the weather will be foul again with more frightening creeks, and my arms will get sore again and my sneakers will leak, but I know now that I will go on, ONWARD and UPWARD!

Saturday, February 16, 2013

All Alone!...

"All Alone! 
Whether you like it or not,
Alone will be something
you'll be quite a lot."
                                ~Dr. Seuss

So we made it past the first treatment and we saw his oncologist Thursday.  Things seem to be progressing, in a positive way.  The medications are working and his doctor seems very optimistic.  We are not out of the danger zone yet, but things are looking brighter.  Aaron's symptoms have already started to calm down.  Partially because of the steroids, but partially because of the treatment.  We won't see any major changes until a couple of months from now, but last night Aaron only woke up 3 times instead of 20.  He has less night sweats and he isn't coughing as hard as he has been, plus he can actually sleep more.  Sleep has been something of a rarity around our house for quite sometime.  From having babies to illnesses.  It's been years since we have been able to sleep well and it seems to be turning a corner for all of us.

Since 2003 we have lived away from both of our families.  When we started having children our support consisted of parents flying in for the birth and staying for a couple of weeks to a month and us saying we didn't need meals or anything during those times, then left to our own devices after they left.  We have always felt that we could handle everything alone and that was just how we were going to have to do it, at least that's what we thought. 

I can't begin to explain how our perspective on life really changes.  I don't wish this on anyone, but I do wish we could all use some perspective on life.  The things I find important now are a little different than before.  I think we put so much pressure on ourselves about making sure we have the right jobs and are labeled as the right type of person, that we lose the importance of what this life is about.  It's about relationships and friendships and helping each other to be successful.  Who cares about the labels.  If we dropped this idea that we all need to conform to the same ideas, we might see each other in a different light.  We might be able to accept each other for who we are and not what we are not.  This life is filled with different types of people and we don't all believe the same or have the same understanding.  That is the way it is supposed to be, but we are all the same in that we are all God's children and that we are here together.  In this life we are always going to have weaknesses and challenges that we have to overcome, but do we have to be alone?  I know we don't, now.  There are so many good people in this world and that we all want the chance to help and serve others.

The other night a neighbor brought over dinner and we expected something from a box, because of how it was listed on the sign up chart.  When dinner arrived it was exactly as it was listed, Macaroni and Cheese, however it was made from scratch and a side of fresh fruit and garlic bread - and it was delicious.  I was so touched.  And I thought how silly it was for me to be so emotional over dinner.  But I realized that everyone who has brought us food has really taken the time and effort to feed us well.  Our neighbor said when she brought it over, that she understood how hard it is to accept service, but that everyone is just looking for an opportunity to help and that it makes them feel good.  :) How selfish that when people want to help, we think we have to do it on our own to prove something to ourselves.  At least to myself.  I am really taken by what her son said as well, he said "what better way to make friends than to serve others."  It's true!  I can't even begin to explain how humbled I am by the service, and it has changed my perspective on life.  Service and love can truly bring a community together and make friends out of the least likely of people. 

When we first moved into this community, it was really disjointed and lots of animosity existed among our neighbors, but over time with some service and activities to bring us together, it has changed and people are more concerned and more involved and care more about each other.  Isn't this how it should be?  Shouldn't we all be working together even with all our differences.  There are so many good people in this world and service can change us to be better and see this world in a different light.  I don't mean to get on a soap box, but I have to admit that it has been a hard lesson for me to learn.  I have had a lot of trust issues and to allow others to help us has started to heal that part of me.  I have to admit, I still feel guilty, like I am not able to concur this alone but alone is something we shouldn't have to be in times of need.  And it feels good to have a little less stress and a lot more sleep.

Sunday, February 10, 2013

Un-slumping yourself is not easily done...

"And when you're in a Slump,
you're not in for much fun.
Un-slumping yourself
is not easily done."
                               ~Dr. Seuss

For almost two months our family has had quite a few slumpy moments. It's been hard to pull ourselves out from underneath all this stress.  We have had a lot of support since our announcement and I have truly come to realize how much I needed the help and how grateful I am for it all.

What was supposed to be another Marathon week, ended up feeling not as stressful as it did two weeks ago.  I am starting to sleep more and be more present for my children.  It is so important, to me, to make sure they feel like their world is safe and secure, because they do not need to carry the burden of this illness.  It's not like we keep it secret.  We don't.  We talk to them and have explained hopefully so that they understand, but we do not stress the danger or fear we feel.  And it's hard to balance something like that.  As much as we thought we were doing a good job, our boys started acting out and I realized the stress was getting to them as well.  After a long week of temper tantrums and fits, I was at a loss as to what I could to do help my children.  Then one morning Camden (4) came up to me and said "Mommy! I sorry for being a stinker."  From that moment on he has settled down and I haven't dealt with the huge tantrums since.  It's amazing what these little people can do and understand.  At that moment I decided, I had to really make an effort not to get upset either and be calm and in control, it's hard and I work on it everyday, but it's something I know I need to do to help my children.

I have wanted to update several times this week but because of all the appointments from Brody's Monday surgery to Aaron's Mom coming in on Tuesday, to Aaron's PET Scan and my work on Wednesday, and ChemoThursday.  We have been BUSY! 

The beginning of the week was hard juggling the other appointmets until his mom came in then things felt less stressful, however Thursday Aaron woke up with a lot of swelling in his neck and face.  The swelling actually started over the weekend with a little in his neck and some pressure in his head.  Thursday he woke up with an extremely large face and neck.  Fortunately, Aaron had his first treatment Thursday morning.  We rushed to the hospital early and met his oncologist before his treatments started.  To describe it, it looked like he was having a severe allergic reaction. 

When the doctor examined him, she told us he had SVC (Superior Vena Cava Disease).  Basically his cancer grew and was putting more pressure on his vessels, causing fluid to build up in his neck, face, and head.  Which means until the tumors start to shrink over the next few weeks, we have to keep an eye out for signs of Stroke.  His doctor said that usually people with the same issues should go to the ER, but because his treatments were starting that he didn't need to go.  The Chemotherapy should clear up all of his problems and there is nothing more they can do to remedy the situation since it is caused by the cancer.

While we were in the Infusion center Thursday, I mentioned that I thought Aaron was the youngest person there.  He shared a room with a women in her 70's who had been doing this for the last 5 years every week.  I'm glad we are not there, and I hope we don't ever get there.  Sometimes I feel like I am taking care of a Geriatric patient with all of his treatment buddies, symptoms and prescribed pharmacy sitting on our counter. :) 

Aaron's treatment went well.  He slept through most of it, when his roommate left I swiped her lazy boy chair until lunch.  It's interesting to talk to the nurses and other patients and see how different each type of cancer is and everyone's treatment regime. Some are in every week, some every other week and some maybe in more or less and everyone has different drugs prescribed.  The more I look into cancer the more I realize Hollywood really dramatizes it.  For instance I watched a movie the other night where this musician/server guy was in love with a deaf girl from a wealthy family.  I thought the story was going to be a Romeo and Juliet story where the deaf girl and the musician run off together, which it kind of was, but all of a sudden the story quickly turned into a cancer story where the lead guy within 5 seconds of finding a brain tumor was balding and puking in the toilet. Not quite reality.  Aaron was tired through his treatment and when he came home he looked a pasty yellow because of all of the drugs, but he had quite a bit of energy.  Friday he did fairly well and visited a few sites for his job.  Friday night he started feeling a little queasy but took his anti-nausea meds and has not had any problems since.  He is definitely tired and sleeps a lot, but he has not lost his hair yet and won't for a few more weeks.  Plus he does not visit the porcelain bowl for upchucks, thanks to all the other meds to manage his side effects.  With all the money that has gone into cancer research, it is getting to the point where patients like Aaron may not even have to have extreme treatment regimes, as long as the reseach continues.

Things are finally in place, his treatments have started, and we come to this place again.  The place I call this blog.  Waiting for the treatments to shrink his tumors and his life to be out of the danger zone.  I don't know when that will happen and what comes next but life can turn and change at anytime, so we just have to see where it goes from here.  Thank you for all of your support, prayers and well wishes.  We are so grateful for everything we have been given during this time.

Thursday, January 31, 2013

Bang-up and Hang-ups can happen to you!

"I'm sorry to say so
but, sadly, it's true
that Bang-ups
and Hang-ups
can happen to you."
~Dr. Seuss

When this news came to us we always imagined that something like this happens to other people. But I think I have gotten the message that it can happen to us as well. None of us are immune to challenges and hardships. I made a comment in the beginning to a friend of mine that this must be Gods way to teach me how to receive service. Both my husband and I have always enjoyed giving to others and serving. Sometimes we spread ourselves too thin, but when it came to challenges in our lives we never thought about asking for help ourselves. I feel awkward and undeserving of such generosity, because I felt like we were self sustained. Even now when people ask I don't know what to tell them, because I don't know what we need. There isn't a manual that tells us how to ask for help and when we might need it. Example, last week was a marathon week to say the least but toward the end of the week on Thursday after 4 days of appointments and procedures, I came home and thought for the first time in my life, I wish I would have one of those church meals for my family. For me to come to that conclusion, I realized that this might only be the beginning to a long hard road. We haven't even started treatments. I have realized I have to be Mom, House Manager, and Nurse. Not like I haven't before, but this time, I won't have the added support from my husband during those treatment times. Usually he is my relief at the end of the day, and I'm not going to have that this time. I have to be there for him and my boys. At some point I may even have to be full time provider again, if my husband isn't able to maintain his job. I have to say, this part of the journey has only just begun and I can't even begin to explain the blessings we have received from our friends and family. I do have to admit there are a lot of ups and downs so far, but what I am learning is to accept the wonderful generosity of others. Service feels good when you give and when I have been in need in the past I have often thought I could just push through and handle it myself.
Last weekend at the end of another long day, we came home to find several bags of food on our porch. Our dear friends from Bellevue travelled 45 minutes to bring us some freezer meals that they prepared for us. Food is always a hard thing with our family because of how picky we all are, but I have to admit the food was pretty amazing. Not the typical tuna casserole. Our first taste of the meals was a frozen pizza which was perfect that night because it was late and we were tired. The next meal we dug into was the tortilla soup. Aaron and I gobbled up the tortilla soup in a couple of days. They included spare ribs, roast beef sandwich and beef stew. All we have to do is thaw and throw it in our crock pot the day we want to use it. How nice to not have to prepare anything, but how nice we can decide what we want on different day. I think we have been truly blessed so thank you Ellisa and Andrew and thank you for the link to the website where these recipes are I think I'm a fan. :)
It's amazing how quickly people respond to situations like this and how our friends that we chat with daily and hang out with, become our biggest advocates and support. This week two of our neighbors stopped by and brought with them a plan. They showed us a website that they put together for us, and told how quickly and eagerly people jumped on and signed up for meals. All the slots filled up within a couple of hours, then they proceeded to tell us that the neighborhood and some additional friends are donating to help pay for cleaning service on the day of Aaron's treatment, to make sure the house is sanitary for his return. Along with that they set up another website for donations to help us pay for the medical expenses. I also have a babysitter who offered to help watch the boys when I need during treatments, because we are friends and she doesn't want me to worry about whether or not I can pay. Just to ask and she will watch them. I can't believe that this is happening.
When they told us this, I cried and even now while I'm writing this I am tearing up. Aaron even admitted he was humbled and overwhelmed by the outpouring of support, he even broke down himself later that night when it all sunk in. I don't think I have ever seen my husband cry as much as I have than through this whole experience.

We don't know what to expect and we don't know what is going to happen, but we do know we have amazing people around us and that we couldn't be more blessed. Thank you Traci and Tabitha and all of Crystal Firs and the strangers that have also jumped in not knowing us. There are so many good people in this world and I think we are pretty lucky to be surrounded by this kind of selfless generosity. Just another testament that God is watching out for us. Thank you!

Tuesday, January 22, 2013

"And will you succeed?
Yes! You will, indeed!
(98 3/4 percent guaranteed.)
        KID, YOU'LL MOVE MOUNTAINS!"  ~ Dr. Seuss

As some of you already know we have the results from his biopsy. 

Aaron has Hodgkin's Lymphoma with a Bulky Mass.  According to the doctor and our neighbor who is a NP, it's a good cancer to have.  What does that mean?  Is cancer ever a good thing to have?  Well, the truth is, this type of cancer has an 85-90% cure rate.  That's great!  However, he has a bulky mass, which means the mass on his heart is very large and there are issues with eradicating the disease completely when paired with a bulky mass.  He is at higher risk of relapse, but I don't know the statistics on that.  With that being said, it still has a very high success rate. 

In the grand scheme of things the course of treatment is very aggressive, because we are dealing with a very aggressive cancer, so for the next 6-8 months it is going to be a rough go for the Nisbet Clan.  I thought knowing would relieve the stress and as we walked around the Mall tonight with the boys, we both agreed that it didn't relieve that much.  What it did was replace that concern with other thoughts and concerns regarding the side effects of the treatment.  Like for instance, he could develop Leukemia, some vascular disease, impotence and infertility that could be permanent, and the list goes on.  Yes I said impotence.  I'm sure you all didn't want to know about that, but I thought I would include it because it took me by surprise. 

I'm keeping it very short tonight, because it's already been a long day.  We had Aaron's appointment then the boys went to the dentist for the first time today, we went to the mall and out to dinner with friends.  It is after Midnight and we have another appointment for Brody's pre-op in the morning paired with Aaron's coag. appointment.  Brody is going in for his second surgery at the beginning of February.  Then Aaron has another procedure on Wednesday and Thursday.  Then I have an appointment on Friday.  I think the health care community can thank us for their raises this year.  :)

Sunday, January 20, 2013

The Waiting Place...

I decided to start a new blog.  Not because I have been really successful at my last blog, but because I need a place to go to deal with the challenges we are facing right now in our family.  I want to be open and honest on this blog and leave myself vulnerable to criticism and other things.  This is important to me in the hopes that what is written may help someone else who may be facing the same thing.

In coming up with a name for my blog I wanted to try to connect to other people or at least make it feel like I am trying to make a connection to what we are going through.  I decided to call it The Waiting Place.

Dr. Seuss has a book called Oh, the Places You'll Go.  It is a perfect story of how we are all on a journey in our lives.  We can choose different roads and different paths.  We can be successful or we can fail.  Any way we look at it, life is a journey filled with challenges and choices.  In the book there is a place where life is at a stand still.  It's called The Waiting Place.  To quote Dr. Seuss:

"The Waiting Place... for people just waiting.  Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or waiting for a Yes or No or waiting for their hair to grow.  Everyone is just waiting..."

I think you get the picture, they're all waiting.

I chose to call it that because I feel like my life has been full of waiting.  From an early age I couldn't wait to be big enough.  I couldn't wait to get to every stage in my life.  From getting my ears pierced to getting baptized to going to Junior High then High School, to dating, driving and graduating, to becoming a young adult, to finding my soul mate and getting married.  To finishing school and having kids.

These last few years have been years of challenges laced with waiting, and maybe I haven't gotten the message or learned what I needed, so now we are being given one of the hardest challenges I think a young family can face.  I never thought it could happen to us, but it has and our whole lives have been turned upside down.

Just a little background for those who are not aware...

My husband and I moved out to Seattle to work for a company with the intention to possibly buy it down the road.  Over the last 10 years there have been good years and bad.  But like everything else when the economy took a huge hit every industry felt the effects.  In the last 3 1/2 years nobody got raises and Aaron started working 7 days a week to make up the difference in a lack of pay.  It was hard.  I felt like I was alone and hardly ever saw him.  I was at home with our boys, and Aaron was out in the world working hard to make a living and support us.

To make a long story short things turned from bad to worse in the spring of 2012 and my husband was laid off on July 2nd, 2012.  Fortunately, we saw the writing on the wall and I was able to find a job which started the same day he lost his.  I worked full-time and he stayed at home with the boys.  It was a nice change, but after a few months I really wanted to come home.  I missed being a stay-at-home mom and prayed every day to come home.  Aaron started having some luck with the job hunt and found a couple of opportunities.  I really hoped he would be hired for a job in Texas.  It would have been great pay and the cost of living was low.  Unfortunately, he did not get that job.  I always thought it was strange that his interview was so bad.  He is educated, experienced, smart, hard working, witty, and people love him. They love working with him and for him.  He is a good man.  But the day of the final interview, everything went wrong.  I can't explain all the details, but I can say it wasn't the right time for this job.  I think he was the right person, just not the right time for him.  At the time I was devastated and heart broken.  It was really hard, but I know now it was not right.  We had bigger things to deal with on the horizon and that job could have destroyed us.

Instead he found a job that kept us local and it was not in his field of experience or degree.  He was hired because of his extensive management skills.  The job isn't a step up, but it's a job where he can actually work around 40 hour a week with a home office and a somewhat flexible schedule.  Little did I know how valuable this would become.  I was so disappointed in this job at first.  I thought he deserved more because he did more before and worked hard, but I realize now that this is what we need.

The day he started his job, I found out my job was on the fritz.  Things weren't progressing in the company and so layoffs occurred.  I had a feeling to ask for my benefits if I was able to stay on part-time.  When the hammer came down I barely had a job, but my benefits were in tact.  I get to work part of the time out of the house and spend one day in the office and so I don't have to put my kids in daycare.  Again, I didn't realize at the time how valuable that was going to be, but I do now.

On a side note, so many things have happened this year and the way things have come together, unexpectedly, I have to say I know there is a God.  We don't always know how our lives are going to go, but I do know that if we have a little faith, things will work out the way they are supposed to.  Maybe not the way we think they are supposed but way they ARE supposed to.

So at this point things are working out, but one piece is still missing from my story and that is the biggest part to our wait. 

See for a year and a half my husband has had a skin issue and at first we chalked it up to eczema. Then over the last few months it spread all over his body and the itching became unbearable.  He started going to a dermatologist but all the tests came back negative.  We did our own research on his itchy skin in combination with all of the other unusual symptoms (night sweats, lack of appetite, weight loss, insomnia, fatigue, etc.) we wondered if it was something more.  I felt he was sick and he asked several doctors if it could be cancer or some else like Crohn's disease.  They all said very unlikely.  So the testing continued.

Just before going to Boise, ID for training Aaron started having problems with his arm.  While in Boise, he woke up one morning and his left shoulder was slumped and his left arm was swollen.  He called a doctor and had an appointment upon his return to Seattle.  On December 20th, his doctor suspected it was a blood clot in his shoulder, but wanted to be sure and see how big it was.  So he took some x-rays and then sent Aaron over to Valley Medical Hospital to have a vascular ultrasound done. 

My mom was visiting at the time, to help with some child care for the week, until things settled at my job.   As Aaron headed over to the hospital, I tooled around town with my Mom and my boys.  After 5pm I got a text from Aaron, that I didn't see until after 6pm, that said he was being checked into the ER.  "What is going on?"  was my text back.  I talked to him and he said they found a blood clot and they also found something else.  He wouldn't tell me over the phone.  Luckily we weren't that far from the hospital and it was on the way home which was good for my mom.

I came into the ER and found Aaron lying in a bed with a tube sticking out of his arm and dressed in one of those sexy hospital gowns.  I didn't wait for him to tell me, I asked almost as soon as I saw him.  He answered somberly that they had found a mass in his chest.  It took a while for it to sink in.  I think I was in shock most of the night and didn't break down too bad.  I sat next to him on his left, when he said they think it's Lymphoma.  Again, my comprehension was slow, but I didn't let Aaron know.  I sat there trying to figure it out and after a few seconds popped up with "so they found cancer".  The blood clot for some reason was the least of my concern.  Sure the clot could dislodge and he could be a vegetable or even dead, but my mind only focused on the cancer.  Only when I heard the "C" word did I contemplate the fragility his life.  They did a CT scan and confirmed the mass that night, but as most know with ER's it was a long night of waiting.  We left the ER after midnight with little information except that it could be Lymphoma and he had to take shots and medication for this clot.  We were left with all these questions and no answers, Christmas was in a few days and we had so much that had gone on all year we didn't even have our tree up.  On top of that because of the Holiday's we couldn't get into see an oncologist until New Year's Eve.  Maybe a week and a half doesn't seem that long to most but when you put a death sentence on it, it feels like an eternity.  The only day we tried to act normal was on Christmas because we wanted the boys to have a good day.  But everyother day, we cried.

I call my blog the Waiting Place because aside from all that I have waited for my entire life, this wait has been the most torturous wait.  Everyday I think about life and death and how real death could be for my husband.  I think about being a single mom and whether our boys are going to know that they have a father who loves, adores, and cherishes them.  The question I have asked so many times is if the worst happens will they remember him.  Our sons are only 4 and 2.  It took us 9 1/2 years with help to conceive one child and the second came 2 years later after the first.  And now the thought of them having to possibly grow up with out their father kills me.  Everyone tells me that I shouldn't think that way, but the fact remains, his life is at risk and our only hope is that all the fundraising and charity that has gone into research for this disease will help the doctors come up with the right way to treat him, to cure him and make it possible for him to live a long healthy life.

The Waiting Place is where I'm at.  But I'm not just waiting I am hoping and praying that things will be okay...

I wanted to make sure I post this today, because tomorrow we find out the results of his biopsy.  One month and 1 day after his trip to the hospital, we will finally have a clearer picture of what he has and what stage and what the course of treatment will be.  I am a little scared... I take it back... I am very scared, but because of the way things have happened this year there is a little light inside of me that tells me, to have faith.  I believe that God wanted it to be found, because if you know anything about blood clots, they usually occur in the legs.  But because his clot was in his shoulder, they found the cancer on the x-ray.  I believe God wants him to live and I want him to live.  Now that being said, I could find out differently tomorrow, but the doctor assured us that he wasn't going to die from this today.

I'm a little relieved... but it still makes tonight a very long night of waiting.