16
Oct
10

His Wife’s Blog

I have intentionally not posted anything on here for a long time.  Sadly, there are a handful of people that are using this blog — out of context, in my opinion — to add drama and stress to our already difficult situation.  These are people that haven’t been entirely supportive of me or many of the choices that Johan and I have made over the years so it’s not surprising but it’s hurtful nonetheless.

Therefore I’ve decided to stay quiet for fear that they will send Johan yet another email to harass him about his wife’s blog.   I can only imagine what this post will bring. It’s a shame because this was such a rewarding outlet for me to share our experiences, both happy and sad, and to keep all our friends and my family updated.  I’ve really enjoyed writing this blog.

Perhaps I’ll write again.  I think a book might be in order.

For now, know that we’re hanging in there.  We’re making plans for the future and looking forward to moving past this very dark phase.  Johan, with the help of Sutent, is doing well managing his cancer.  He learned a few weeks back that  his tumors are indeed shrinking.  We are staying positive and trying to keep our eyes focused on those things that make us feel safe and happy.

Until next time…

 

 

Advertisements
27
Aug
10

How are you doing?

We went to the American Consulate in Amsterdam yesterday for Johan’s green card interview. It was a big day for us because, as many of you know, it is not easy to get a green card.  The Consul ended the interview by saying, “Johan, you have been approved. Welcome to the United States.” Part of me wanted to jump up and down with joy but then I remembered the circumstances that brought us to needing this important document.

Many people have asked us how we’re doing and what our plans are for the future.  While we’ve made some big decisions, so much of the future is out of our control.  We know that Johan’s cancer treatment will continue here in Holland and we plan to maintain a residence here in order for that to happen.  But we want to sell our house here and purchase one  in the U.S. so that when the inevitable happens, the kids and I will not have to face a trans-Atlantic move and all the changes that go along with such a major change while we’re mourning.  It is my biggest wish for the kids to make as many memories with Johan in their new environment as they can so that they can cling to them, and hopefully find comfort in them, for years to come.

Initially, we thought it would be best to purchase a home near my parents in Texas so that they would be close to comfort and lend a helping hand.  But over the summer we made the difficult decision to move Emma to her Dad’s house in Ann Arbor, Michigan.  Without knowing when we will be able to purchase a house in the U.S. we decided that it would be in Emma’s best interest to start the 7th grade in a U.S. school at the beginning of the school year, in order to hone her English and start making some friends.  Her dad was, of course, over the moon with excitement but it nearly killed me to let her go.  It made the idea of owning a home in Texas, far away from Michigan, very unattractive.  There will be many changes in our future and putting all those miles between me and my children just didn’t make sense.  And, thankfully, over the years, Johan and I have remained good friends with Emma’s and Max’s dad, John, and his wife Kelly. I know we will all be a good support for each other.

Yesterday’s trip to the American Consulate and hearing the words “you have been approved for a green card” was a milestone for us but there are still so many obstacles that we need to overcome before we can fulfill our dream of purchasing a home together where our children can grow up.   Buying a home is always a big deal but when you’re doing it because your husband and the father of your children has incurable cancer, it takes on a whole new meaning.  It is the next step that we need to take as a family and until it is accomplished we are left feeling exposed and insecure. I often think, what if Johan deteriorates rapidly over the next month and he never gets to see what Isabelle’s bedroom looks like or swing with Jack at his favorite park or go to Max’s first football game or drive Emma to the movies.

Since learning that Johan’s cancer did not respond to the IL-2 we immediately started getting all of our ducks in a row so that we could, as a family, move on to the next phase of our life and start making lots of memories.  Obviously, the most important thing was getting the cancer under control with Sutent and thankfully, it continues to work.  As of yesterday we got the green light on Johan’s green card.  For us, this means that we now have a document that we need in order to get a mortgage in the U.S. because the mortgage will be based on Johan’s salary and he is Dutch and his employer and bank are both foreign.

Next comes the sale of our house here in Holland.  Well, it’s not that easy.  In fact, it is way more complicated than I ever realized.  Basically, Johan’s flying loans are attached to our mortgage and without the collateral of the house, the bank is in a position to tell us we are not allowed to sell the house without paying the remaining portion of the loan.  That is not an option for us so we’ve told the bank our circumstance and asked for permission.  We have been waiting for a response since the end of June.  If we cannot sell this house we will not be able to purchase one in the U.S.  But if they do allow us to sell,  well, then we’ll have to sell and selling a home in this market is not going to be easy.  Once we do sell, we have to attempt to get a mortgage.  This is not always easy if you have a European employer and no credit in the U.S., even if you have a green card.  Banks generally see no credit as bad credit.

But if we’re lucky and get a mortgage, we’ll buy a house and start to get settled.  Then we will need to find a place for Jack, who has autism, to go to school.  Having a special needs child complicates things tremendously.  There are several very nice and expensive private schools in Ann Arbor but since money doesn’t grow on trees here in Holland we will need to explore what schools/services are available for him at little or no cost.  This means there will be lots of research, applications, forms, translations, doctors visits, tests and time.  We will get there in the end but this task alone can make a parent feel overwhelmed.

I wake up every morning and, for that split millisecond, I am in bliss.  Then I remember that Johan has cancer and we are very, very vulnerable right now.  My first thought is always thank you, Sutent, for keeping him in my life one more day.  And then I wonder how I’m going to make it through the day without going stark raving mad from the anxiety about the future.  To be honest, I only succeed 50% of the time at living life “normally.”  I enjoy the little things and escape in my love for Johan and my role as mom.  The other half of the time I am sad or angry and always scared.

I have hesitated writing this blog because I don’t want to have a pity party.  I don’t want to worry anyone.  I don’t feel it necessary to advertise my problems and I certainly don’t want to sound negative!  (Gasp!)  But many friends have asked “How are you doing?  How is Johan?  How is the cancer treatment going?”  And, most of the time I just smile and tell them that we’re fine and making the best of it…and we ARE… but it’s hard.

It dawned on me the other day when I was emailing back and forth with an old friend that, aside from Johan, my children and parents, the one thing that always makes me feel better and safer are my friends and their unwavering love and support.  There is not a lot of stability in my world right now and I feel like most of my life is out of control – two of my kids are across the planet – but the one thing I can count on, aside from my wonderful family, are my friends.  Johan and I are struggling but all those random emails, pokes, phone calls, messages, cards and drop-ins are our lifeline right now so I thought it was about time that I let you know how we’re really doing.

Stay tuned.  I’ll write again soon.  I promise.

02
Jul
10

Slap in the Face

As I was sitting in the oncologists’ office yesterday it hit me that Johan will take medicine for the rest of his life.  He will take it until it stops working, and, of course there are other drugs and therapies to try, but he will always need medicine to live.  I guess I’ve known this ever since the IL-2 results came in but it hadn’t registered yet.  At all.  I didn’t even think about it when he started taking the medicine.  I guess I was more focused on whether or not it would work.

We told the oncologist that we suspect the skin lesion is swelling.  It is still a wound — one that got infected about a week ago — but it is healing slowly.  As it’s getting ‘better’ the skin around it feels thick (for lack of a better word).  When it initially shrunk down to a blister, before it popped, it didn’t feel as thick.  And it wasn’t as wide.  So, is the thickness new cancer growth or is it because of the infection?  Tough call.

Johan’s first cycle was 28 days of 50 mgs. of Sutent and then 14 days of rest.  During the last 4 days of the 14 rest days we realized the wound was changing again.  Because we want to stay on top of any new growth, the oncologist suggested we switch to 37.5 mgs. of Sutent continuously.  Today, Johan started this new dosage.  I know his biggest concern is not having a reprieve from the side effects but, with a lower dosage, maybe he won’t have any.  As I said in an earlier blog, he didn’t have many but even little ones aren’t fun.  One noticeable change from the Sutent is his hair color.  It’s all blonde/white.  No more auburn/red.  But he’s still my handsome guy!

I made the decision to watch the Farrah Fawcett documentary last week.  As I knew it would be, it was very sad.  She was a brave, brave woman and her battle was very moving.  As I watched, I found many similarities between her story and ours:  She never lost hope.  Her true love was her soul mate and did everything he could to keep her going.  She had to travel to another country to get the treatment she wanted.  She had many people, from all over the world, routing for her and sending her letters — this really meant a lot to her.  In the end, she got very weak and very sick but she never lost her spirit.  Because of these similarities, I related to her in a way that I didn’t expect.  I learned and gathered strength.

Getting back to my moment in the oncologists’ office yesterday, my realization combined with my feelings about Farrah’s Story, made me very sad but it also renewed my drive to be spontaneous and fun.  It was like a slap in the face.  Life IS short.  I’m not going to waste another minute.

26
Jun
10

Never look back

Is there someone in your life who always seems to make you feel worthless, unfit or just plain “not good enough?”

Maybe this person is a teacher or a co-worker or a friend-of-a-friend. You can’t necessarily rid yourself of them because of their role in your life but you know, in your heart, that they wish you didn’t exist.  Each time you have an exchange, either in person or on the phone, they find a way to criticize you, even if it is in the form of a compliment.

Slowly, and almost without your awareness, this continual negativity begins to wear you down.  It eats away at your beautiful confidence and replaces it with ugly insecurity.  One day you realize that because of this individual, you have become a stranger to yourself.

Do you know someone like this?

I do.  This person, in the six years that I’ve known him/her, has not hidden the fact that he/she would happily see me walk into the sunset — never to return — for a long time.  But my hands have been tied, so to speak.  That isn’t the case anymore.  For a while I turned a blind eye to the “abuse” but eventually, it started to interfere with my role as wife, mother, friend, daughter and it started to compromise my happiness.  Eventually I started going out of my way to avoid this person.  I confided in those close to me but there was nothing they could do.  It was up to me.

About a week ago I woke up and realized it was time for a change.  Enough was enough.  Maybe it’s the fact that Johan has cancer that has led me to find the strength to realize that I AM good enough.  I deserve better.

I guess what I’m trying to say is that life is too short to surround yourself with ugly people.  Move on and find those who love you for who you are.  And never look back.

24
Jun
10

Breaking the silence

The 28th of this month is our sixth month mark.  What a bizarre time this has been.

The good news is that the Sutent is working.  Within the first week of taking it, Johan noticed a significant decrease in the amount of chest pain he had when coughing or sneezing.  The most exciting part was watching his skin lesion get smaller and smaller and smaller until it was like a dime-sized blister.  It had shrunk about an inch and a half (my best guestimation) in just over 2 weeks.  A few days later it popped.

After the enormous disappointment of learning that the IL-2 did not work our psyches needed this positivity.  But, as the days wear on, the reality of the situation becomes more clear.  More real.  While we are absolutely over the moon that this medicine is working, we both understand that, at any moment, it could stop working and things could very quickly deteriorate.  Emotionally, this is a strange Purgatory-like place to live.

Sutent is an oral medication which makes it easy and painless to take.  Johan takes one pill a day for 28 days followed by a 2-week break.  Then the cycle begins again.  We have a scan after the third cycle “to see if the tumors are shrinking” but, thanks to the skin lesion, we already know it is.  In very simple terms, Sutent cuts off the blood flow to the tumors so they can’t continue to nourish themselves and therefore don’t thrive.  Eventually the cancer will get smarter and find other ways to flourish but for now we’re happy to see a response.   There is no way to predict how long Johan’s body will continue to act this way so we’re trying desperately to live day-to-day, week to week, month to month.

Thankfully, Johan hasn’t had any adverse side effects.  Fatigue was certainly evident but easily manageable.  He also experienced a change in his taste buds.  Most foods were bland.  Things like mild mustard (which he loves) and peppermint toothpaste were painfully strong.  There were a few minor aches and pains but, really, compared to what it could have been, I am grateful it wasn’t grueling.

However, our celebrations about Sutent have been stifled.  Instead of running through the hills singing and rejoicing, we have been dealt a few other obstacles.  Yeah, I know.  That’s life but it still hurts. Cancer is only one of the battles we are fighting right now.  It isn’t anything I want to introduce here but, sadly, I can see the strain that the stress is putting on Johan.  This, combined with our new residence in Purgatory, is taking its toll on all of us.

We were so strong and passionate about not letting the cancer get the better of us, and I think we succeeded in that, but without a secure foundation to fall back on, we are realizing that our enthusiasm is rapidly fizzling out.  For now, we are coasting on fumes.  I can’t help but try to imagine where we’ll be in six more months.  Hopefully in a much better place.

27
Apr
10

results

We learned late last night that Johan is not an IL-2 responder.  We have a meeting with our Dutch oncologist on Wednesday to discuss the other treatment options.  Of course we are disappointed but our spirit is not broken.  I will write more as soon as I know more.

26
Apr
10

Laugh out loud!

They say laughter is the best medicine and I’m a true believer.  Just as I try to eat an apple a day and drink 8 glasses of water, I also make it a point to laugh as often as possible.  In fact when friends ask me how I survive living in a foreign country with a pilot husband and 4 young children, I tell them that the key to my success is laughter.  Finding the humor in all of life’s craziness enables me to enjoy and embrace it.  It has been a successful technique.  Well, most days.

Since Johan was diagnosed with cancer we have faithfully used this technique to get through the rough patches.  Making inappropriate jokes has been exceptionally fun but the real trick is to have a laugh whenever the opportunity arises.  It soothes the soul and, for that brief moment, you are allowed to forget your worries and enjoy the feeling of happiness.  If you laugh often enough you can string together all those free-spirited moments and come away with positivity, even if it’s during a hard time.

When I think back to our recent trip to the U.S. I don’t necessarily have grim visions of the ICU.  Instead I think about Johan’s niece, Tessa, and her big beautiful smile.  Her humor was right on target and she was always up for a laugh.  I also think about one of the nurses, Janell, who found Johan’s uninhibited honesty quite funny.  We certainly shared a few laughs with her!  And I think about sitting around Johan’s aunt’s dining table.  Whether it was breakfast or dinner we inevitably started laughing.  Johan’s aunt has this fabulous sounding laugh that makes you smile even if you have no idea what she is laughing about.  It’s great!  Then, of course, there are all those especially sweet (and certainly very funny) moments that a husband and wife can share in situations like this.  Johan and I certainly took advantage of those.

Today is the day that we find out if the IL-2 has successfully started fighting Johan’s cancer.  If he is one of the 20% of people who respond to IL-2 then he has a chance of full remission.  If not he will start other treatments and hope that they will manage the cancer well enough to give him many more years of life.  No matter what the outcome of today’s scan, I know that this is just the beginning of the rest of our fight.  Thankfully we have the love and support of many, near and far, and as Mary Poppins would suggest, we will use a spoonful of laughter to help the medicine go down.




Disclaimer: This blog may have horrendous spelling and grammar errors.