DD2: three years later

I know it's Mother's Day and my only real day off this week and a sick day for the kids, but also the mark of three years since Anne-Marie was diagnosed with a recurrence of cancer.  Three years!

That day we thought the sun wouldn't rise the next morning.  Well, it did.  And a eleven hundred days later it still does.  I am so thankful for life and that we decided to get up on May 11th and keep going.

Notes on the 11th surgery (thanksgiving)

Surgery 11 was more predictable than this year's previous three procedures.  The main surprise was that they asked us to be there early in the morning.  (Usually the early appointments are reserved for those that are having major operations that last several hours.)

We needed to be in at 7:30, so we spent an extra night at in the South Lake Union neighborhood at SCCA house (Awwwwww.  Too bad!)  Serious Pie and a quick trip to the most urbane Goodwill and it felt like we were on vacation.

The next morning came very quickly and even though prep took 2 1/2 hours, Anne-Marie was off to the OR what seemed like far to early in the day.  The procedure was performed in a better-than-textbook 70 minutes and Dr. Colohan came in to talk to me.

She told me that all went well and that Anne-Marie was doing fine.  She would be out of the recovery room in an hour.  She told me that next surgery would be the last one.  THE LAST ONE!

Anne-Marie is almost completely back up to speed after two and a half weeks, an easier recovery than the surprising struggle we had in July.

Anne-Marie has had six surgeries this time around inside 24 months, with an extra hospitalization thrown in there for fun.  Four of those surgeries have been this year: a personal record.  In the middle of the four we moved 120 miles.  And by the time we hit next spring, we'll be celebrating the entire chemo-->invasive cancer-->radiation-->reconstruction-->recovery process.  We're almost back to where we were in 2012!  This is great news.

At the same time we're going to have to learn how to go on after this.  We'll have to figure out if we want to leave our partnership with SCCA and the U of W and connect with a team of doctors here.  We'll need to figure out how to build Anne-Marie's strength back up.  We'll get to figure out what to do with all the extra vacation time I'll accrue.

We'll figure out how nine years ago life didn't stop, it just changed a lot.  Thank God for the path ahead.

NBCAM, Pinkwashing and Komen

October is National Breast Cancer Awareness Month.  I usually try to post at least once about the topic during this time and usually I write something inspirational and determined.  Not this year.

This year I want to talk about pink ribbons.  Many things have been said about the pink ribbon over the past five years.  People love it; people hate it.  The shift in public reception from when Anne-Marie was first diagnosed with BC in 2006 to now has been huge.

In 2006, we had friends openly support us by displaying pink ribbons.  They were making the declaration that they were with us in our struggle.  Today, I have friends who tell me how stupid and annoying they think the pink ribbon campaign is.  People's criticism of the pink campaign usually has one primary target: Susan G. Komen.

For those who don't know, Susan G. Komen is a charitable organization named after Susan Goodman Komen.  Komen was dying of BC and her sister promised her she would do everything she could to help other people with the disease.

People hate Komen.  They hate their ribbons.  They hate their collaborations with for-profit organizations.  They hate that little race they do downtown.  Mostly they hate them for partnering with Planned Parenthood and then not partnering with them and then partnering with them again.

The controversy with PP happened in January of 2012 and has dogged Komen ever since.  Perhaps politically motivated, the more conservative Komen ended funding for screening with PP, who is the largest abortion provider in the US.  Liberals freaked out, Komen changed course, conservatives freaked out, everyone was angry and donations dropped by over 20 percent.

There have definitely been some fair criticisms of Komen and "pink-ribbon causes" over the years.  Tons of pink stuff everywhere in the fall.  The use distribution of funds.  The CEO's salary.  I hear you on all that because I--just like you--want my dollars to go as far as they can to the most worthy cause that they can.

But before you turn your back on the whole thing, please hear me out on just these few points:

1.  There are plenty of other "pink ribbon" organizations beside Susan G. Komen

The so-called pinkwashing that you see around America is hardly the result of one organization.  The NFL isn't partnering with Komen (or the Oregon Ducks).  Those pink uniforms are helping another non-profit.  The annual push by Estee Lauder--who invented the pink ribbon--goes to support the Breast Cancer Research Foundation.

The numerous non-profits that support breast cancer related treatment is actually an advantage for those who are truly concerned about the cause.  Do you hate Komen?  Awesome!  Consider Dana-Farber, LBBC, The American Cancer Society.  The options that we're given to find a charity that matches our values gives us no excuse.  And because of that...

2.  You are free to donate your money elsewhere...

But answer this honestly: Do you?  For many people that pink can of Campbell's Soup is the whole of the donation that they will give.  These type of things make up a large part of the hundreds of millions of dollars that are donated annually to deal with breast cancer related issues.

So you can say it's all too cute, that it's cause marketing and that it doesn't actually impact real people.  You might be right on the first two, but you're wrong on the last one.  Very wrong.

Why?...

3.  Susan G. Komen kept us from going bankrupt

In May of 2012, when Anne-Marie was diagnosed with a recurrence of breast cancer, I was a self-employed freelance drafter that had no health insurance.  Since then, Anne-Marie has received two and a half years worth of treatment at the finest cancer hospital in the Western United States.

Who stepped forward to help us out?  The Susan G. Komen Foundation.

A grant from Komen provided us with coverage for our medical bills.  After I received my current job and I (unfortunately) found out that the premium and out-of-pocket costs for my wife would still send us to financial ruin, Komen's grant still held.

Obamacare tried to take the coverage away (twice!) and failed.  It's a good thing because the Affordable Care Act isn't really that affordable.  Not when you have a serious medical condition, anyhow.  Trust me: I've run the numbers many, many times.

Donations given to Komen have helped a very overwhelmed family who had so many other things to worry about, worry about things a little less.

---

So you can go ahead and hate and bash.  I know people think they have their reasons.  But you're not going to hear that kind of talk around here.  Everyone has their opinions, but we've lived it.

It's an opinion that I think is worth sharing.

Seven

My God, my God, why hast thou forsaken me? why art thou so far from helping me, and from the words of my roaring?
O my God, I cry in the day time, but thou hearest not; and in the night season, and am not silent.
- from Psalm 22 "Deer of the Dawn"

Seven years of blogging.  Seven years of cancer.  Seven years of waiting.  Of feeling like life has been put on hold.  Of deciding if we should make plans or cancel them.  Of wondering whether or not I should press the "Publish" button.

A friend was telling us the other day how grateful he was to have friends that put such a "human face" on cancer.  He expressed that it made a very difficult subject easier to understand, especially for the person who hasn't experienced it themselves.

Hearing comments like that is very helpful for a guy who's grown rather tired of his own story.  Talking about cancer and the difficulties it brings was easy the first year, but now that it's encroached on nearly 25% of our current lifespan, it's become exasperating, played out and even a bit trite.

In fact, this is the third version of this post that I've written.  One version was too cynical; the other too sentimental.  This post will likely take on another negatively-charged adjective as soon as I post it.  (Ask my wife who gets weekly requests to "proofread this underwhelming and incredibly disappointing blog post.")

In all of this I believe we still have a story that needs to be told.  In fact, if that's all the good that comes out of this whole journey, I('m trying to) believe that God will make it our redemption.

The reason why I can hope for this is because of the book of Psalms.  Have you ever read it?  The majority of it is a songwriter lamenting over their current circumstances and begging God to hear their prayer.

There's been a lot of lamenting here as well and--hesitant as we may be to share--we're still telling the story just as the story of our lives is still being written.

I'm glad that the psalmists didn't hold back or refuse to tell the story.  We both need that to give us the courage to tell ours.

For he hath not despised nor abhorred the affliction of the afflicted; neither hath he hid his face from him; but when he cried unto him, he heard.  Psalm 22:24

He didn't fix it.  He didn't remove the problem.  He didn't promise that seven years wouldn't turn into eight.  He heard.  But now I'm preachin'.

Publish.

Our perspective on Angelina Jolie's preventative mastectomy

I already posted a story almost identical to this one last October.  The difference this time is that the person that's talking about her personal experience is famous.  Very famous, really.

Angelina Jolie posted about "My Medical Choice" of having a double mastectomy for preventative reasons.  (This is where I insert the disclaimer that this post will have some sensitive and frank talk about human female anatomy, so if that's not gonna work for you, please move on and read something else.)

What does that mean in English?  She had both of her breasts surgically removed because she wanted to remove the threat of ever developing breast cancer. I'll reiterate: Jolie never had cancer.  She had the surgery because breast cancer runs in her family and because she had genetic testing that confirmed that.

Anne-Marie was in a similar situation about 7 1/2 years ago and planned on having genetic testing done to see if she had the same gene mutation that caused cancer in her grandmother, mother and aunts.  Before she could get the testing done, she was diagnosed with cancer.  She subsequently had surgery to remove the cancer, along with breast reconstruction, which was similar in nature to Jolie's surgery.

The reason we're writing this particular post is because now--for probably the first time--people that previously knew nothing about hereditary breast cancer are talking about it.  We thought we'd go through the Jolie article point by point and comment on it with our experiences.  This is not necessarily to criticize Jolie, her opinions or her choice.   We just want to give you our perspective. (read the article here, or the rest of this post won't make sense)

...They have asked if the same could happen to me.  I have always told them not to worry, but the truth is I carry a “faulty” gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.

The term BRCA is very common in the breast cancer community.  Anne-Marie carries the BRCA 2 gene mutation.  The difference between the two is that BRCA 1 often doesn't respond to hormone treatment.  The small upside is that (obviously) BRCA 1 treatments don't mess with your hormones.

...the risk is different in the case of each woman.  Only a fraction of breast cancers result from an inherited gene mutation.  Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.

The numbers for this keep changing.  And it's true that most breast cancer isn't hereditary, but the people that need to be most cautious about the situation are the ones with family history of genetic breast cancer.  I hope that makes sense.

...I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.

She means the breast surgery is more complex than the ovary surgery.

...On April 27, I finished the three months of medical procedures that the mastectomies involved.  During that time I have been able to keep this private and to carry on with my work.

OK.  This is where our perspective and personal experience diverge from Jolie's.  Three months is pretty fast. If you did it all in three months, it would be a very difficult three months. Actually, that's a bit of an understatement.  As far as "carrying on" with your work?   If you could work in bed (and some might have that set up), then it may be possible.  At least, in our personal experience

...My own process began on Feb. 2 with a procedure known as a “nipple delay,” which rules out disease in the breast ducts behind the nipple and draws extra blood flow to the area...it increases the chance of saving the nipple.

Jolie later writes in this same article that the testing costs around $2,000-3,000.  As far as I know, the basic test actually costs more like $300, but I think her cost was much higher because she had procedures like the one described above.  To the best of our knowledge, NO ONE under normal circumstances is doing procedures as in-depth as this (that is of course referring to those already diagnosed, since there isn't a large group of people telling their stories about purely preventative surgery as of yet) and not everyone gets that $3000 version of the test. So while this sounds great, I don't think it's common or even an option for most.

...It does feel like a scene out of a science-fiction film. But days after surgery you can be back to a normal life.

It depends on what your "normal life" is like.  At the time of Anne-Marie's first surgery she worked a physical, hands-on job.  So, not even close.  She probably could have been back at work in three to six months.  We'll tell you why in a second.

...There have been many advances in this procedure in the last few years, and the results can be beautiful.

Not that we're aware of.   Maybe there has been for those for whom money is no object.  If she means in the last 10 to 15 years, then yes.  Advances have been made, especially since the Women's Health and Cancer Rights Act of 1998 that mandates that insurance companies cover reconstructive surgery for breast cancer survivors.  This made the demand for skillful reconstructive specialists and techniques rise dramatically and thus, the results are better.

Returning to what I mentioned above: one of the biggest reasons that the recovery is so difficult (and would make it nearly impossible to get back to "normal life" in a few days) is that the surgery involves the placement of "expanders" under the muscle wall of the chest.  They peel it up and jam what amounts to two rigid water balloons between the muscles and rib cage and incrementally fill them with saline injections (read: needle) in order to stretch the muscles and skin to hold an implant.  Really.

This amounts to a vice-like affect on the chest and lungs, so doing anything active would be pretty difficult while this process is going on.  It takes three to six months for a lot of people.

...My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer.

Like we said, the percentages change a lot, but this sounds pretty close.   As far as telling your children that they don't need to fear losing their mother: it's not technically true, but we would tell our children the exact same thing.   Even considering that Anne-Marie is the one that didn't make the percentage.

...It is reassuring that they see nothing that makes them uncomfortable. They can see my small scars and that’s it.

True.   After three months your kids wouldn't see anything.  Small scars?  I think Jolie's procedure was different than what the average woman would have, but the scars could be considered small.   Probably just a few inches.  That really is small considering what they're doing.

...I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.

This should be true for all women because the shape of your body doesn't define who you are.   Hopefully, Jolie has a group of people around her that are affirming her through all of this.  We think that some women probably would struggle with feeling diminished femininity.  Not saying that's a correct perspective, but it happens.  A lot.

...We managed to find moments to laugh together.  We knew this was the right thing to do for our family and that it would bring us closer.  And it has.

It makes us happy to hear this and we agree.  The experience does bring you closer and the value of that shouldn't be diminished.

...For any woman reading this, I hope it helps you to know you have options...It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options...Life comes with many challenges.  The ones that should not scare us are the ones we can take on and take control of.

Yes.  Now we examine the overall point.  This is why we think what Jolie is doing is a good thing.  Not just her decision, but speaking out about it.  Options are available and she's doing us all a service by making us aware of them.  As I mentioned above, the basic genetic test is probably more in the $300 range.

 Sure it's not fair that people will listen to her and not (the aforementioned) Allison Gilbert, but this disparity should come as no surprise. The high visibility of this specific situation gives us this unique opportunity.   That's why I'm writing and you're reading right now.

Trust us when we say that you do not want to go through chemotherapy or hormonal therapy treatments.  If becoming educated about genetic testing will keep someone from this, then we applaud Jolie for having the courage to tell us this very personal story.

Diagnosis Day 2: one year later

Today marks a year since Anne-Marie was diagnosed with a recurrence of breast cancer.  I"ve already marked six of these days for Diagnosis Day 1 (which occurs on May 12) and I never know whether it's a day to celebrate the gift of another year or to mourn our losses.

On the positive side, we've made it through about two-thirds of the most difficult treatment processes.  The tumor is gone and radiation wrapped up two months ago (thank God!).  After many different tries, our team of doctors has finalized a treatment plan.  Anne-Marie's been working double-time to catch up on the things around the house that slipped through her fingers in the last 12 months.

On the not-so-positive side, it is still cancer.  We spend a lot of days aiming for what seems to be an unknowable normal.  Day-to-day life at our house has been altered significantly by what's happened and we're still not quite sure what can be recovered and what we just need to let go.

And so here we stand on May 10, 2013.  It's been one year since that phone rang and detonated our lives.  We're still sweeping up rubble and we plan on rebuilding.  We really don't know what it's gonna look like when it's finished.

Read more about that day in my original post "Running Away, Part One".

Using "The Spoon Theory" to understand chronic illness

I hardly ever post three times in a single day, but I thought this was worth sharing.  Christine Miserandino shares her story of chronic illness through a quirky object lesson.  This may be a little bleak for how I usually communicate, but it may help you better understand certain aspects of the struggles other people face (and that makes it worth posting).  Click the link...

The Spoon Theory

Surgery is today!

We've talked about for weeks and postponed it once. Anne-Marie will have the cancer removed today along with beginning a long process of recovery.

WH2: Coping

"You can blame yourself up to certain point, but after that it's just a coping strategy."

These were words God whispered to my heart about six or seven years ago when I was going through one of my darkest personal struggles.  The idea is more real now than it ever was.

Can I talk to you for a minute about coping?  If your life is really hard right now and people don't really understand where you're coming from.  Or, if you're so buried in circumstances that you're struggling to find where you are but know you're in the wrong place, this might be for you.

Guilt and shame are great at spending years proclaiming the message in your head over and over again that "If you were stronger, you could control this situation!"  If you're at all like me you've heard this sound bite in heavy rotation in the back of your mind.  Do me a favor and ask yourself honestly whether or not this is true.  Is it?

If it's not, why do you keep using it as a guidepost to evaluate your situation?

Through nervous energy and pent-up emotion we try to make ourselves useful by drinking the poison of blame.  And if I can't blame someone else, maybe I'll try blaming myself.

I want sooooo badly to be able to attach my pain to something.  To anything, really.  And I don't want to be a guy who lives with bitterness toward my family, fellow man, my country or even God.  So often there's only one guy left to take the full force of the attack.

If I remember correctly, it was a Jewish philosopher that once said, "If pain were water, all the world would drown."  And so many are drowning.  Not for any good reason except that they're trying to cope.

I really want to say that I have the answers to all this complexity, but I don't.  I'm writing to you from right in the middle of it.  Coping with an unresolved situation can do funny things to your mind and a lot of people turn to a lot of unhealthy things to deal with it.  I have a lot more compassion for those people today than I did a few months ago.

Here's the simple thing I've learned: You can't let your coping control your life.  It will if you let it.

Ramble over.

(Just so you know: This is not at all to give a hall pass to saints and sinners who are doing wrong and harmful things.  If it's true that you can change it and need to seize control of your life, talk to the people you've wronged, make it right and fall on your knees before God before you go to bed tonight and ask for forgiveness.  That's something we all could use.)

Raising my own awareness

This October I was gonna write more about what it's like to fight breast cancer and what it's like to be in love with someone fighting breast cancer.  And false perceptions.  And the color pink.  And people who've used our pain as a stepping stool to promote their ideology.

Yeah, I was really gonna educate everyone, because I'm the one who knows.

Wellllllll, once again maybe I don't know as much as I thought because I used up all my energy this National Breast Cancer Awareness Month doing what?  Helping my wife fight breast cancer.

I posted this last year (and, no, I'm still not getting the tattoo).  I love this song and the stories they included with it.  As this NBCAM comes to a close, this is really all i got.  Be encouraged.

 

NBCAM: My Preventative Mastectomy

October is National Breast Cancer Awareness Month.  It's meaningful to us every year, but this year in particular since we're not finishing up treatment, but starting it up again.

Let me start by warning you that this post (really just the story linked to it) will be rated PG, which is atypical for this blog.

CNN posted this story over the weekend and I found it compelling.  I thought some of my readers might be interested in it because it will help you understand Anne-Marie's situation a little bit more.

Anne-Marie's family did not discover until late 2005 that the disease that was afflicting so many of the women in their family was caused by the BRCA2 mutation.  If you read the article, you'll see occurences of breast and ovarian cancers in BRCA positive women are pretty high and that treatment needs to be intense and intentional.

Gilbert (age 5) with her mother

This article says a few things that most don't and won't, including this:

...even Dr. T. Colin Campbell, author of the popular vegetables-are-key-to-health book "The China Study" admits diet may not be enough to protect BRCA patients from cancer.

One of the strangest things that happens after being diagnosed with cancer is having a lot of well-meaning people come to you and tell you ways to fix it.  Sometimes people are so forceful with their opinions that they nearly blame the person with cancer for having the disease.  Although, Anne-Marie's diagnosis wasn't a foregone conclusion--and certainly the recurrence wasn't--there are some things that are beyond any human ability to control.

I know none of you would ever do something like that, but if you've been that guy in the past, don't beat yourself up over it.  We know that people haven't intentionally sought to hurt our feelings and just want to help.  Sometimes it's just hard to know how.  I hope Allison Gilbert's story will get you a little further down that road.

So, if you've taken time to read this:

#1. Thank you

#2.  Understand Allison Gilbert's story is very similar to Anne-Marie's and demonstrates the weighty decisions that those faced with this type of cancer face on a regular basis.

Hold on, everyone! Change of plans!

After five months Anne-Marie's treatment plan has turned into a treatment "don't make any plans" plan.  The reason for this is two-fold.

#1 The approach of the SCCA doctors

#2 The fact that this is a recurrence, not an initial cancer diagnosis

I would go into depth on these two things, but you probably don't care and just want to know what changed.

Dr. Korde says the cancer is not responding to the Herceptin and surgery needs to be done right away.  Apparently, it was the Tykerb that--while simultaneously destroying Anne-Marie's life--was successfully shrinking the tumor.  Since going off of it, Herceptin alone hasn't had any measurable effect beside maybe keeping the cancer at bay.

The most amazing thing about this story is the fact that we both greeted this news with total indifference.  Six years ago we would have completely freaked out.  Somewhere between a Godly peace and a worn-out apathy, we joked with each after getting the news that "we're busy in October".  I'm thinkin' that "right away" means "next month" in medical terms.  Right?

Right?

So, Anne-Marie made a pre-op consult appointment for a couple of weeks from now.  We'll update you as this develops

Tykerb revisited (for the last time)

Anne-Marie's doctor has changed her treatment plan three or four times over the last three months.  This time Anne-Marie has been taken off the pill-form chemo (Tykerb).  After we figured out that the Tykerb wasn't gonna work out, the doctor decided to put Anne-Marie on weekly Herceptin.

In the time between the stopping the old treatment and starting the new treatment, the cancer grew. We believe the Herceptin will reverse this.  This may mean surgery in the winter instead of the fall.

Kicking Tykerb to the curb

And we're done.

Our first attempt to treat Anne-Marie's cancer is done and over.  A couple of weeks ago, Tykerb (the pill-form chemo treatment) made Anne-Marie break out in a rash all over.  This was not just any rash.  It was a rash that nearly incapacitated her for ten days.

After lowering the dosage three times, we figured that balance and harmony had been acheived and we could set a schedule for next couple of months.  We got the calendar all figured out.  Anne-Marie only had to go to Seattle Cancer Care every three weeks and take three chemo pills every night.

It took three or four days to realize her body was saying, "I don't think so."  By the time Anne-Marie quit taking Tykerb, the damage was done.  She had a rash all over her body that wouldn't go away and began to lose her hair.  Even though she quit taking the pills, the rash lingered on for another week.

Let's fast-forward from three weeks ago to today.  The doctor says that--putting aside the horrible side effects--the treatment was working.  The tumor has shrunk by about 30%.

The question is whether or not it was Tykerb or Herceptin (Anne-Marie's other treatment she gets at the clinic every third week) killing the cancer.  Dr. Korde is counting on Herceptin only to eliminate the tumor prior to surgery.  Because of this, the doctor is recommending doing Herceptin weekly (starting 9/6) instead of every three weeks.

We don't know how to work this out with our schedule yet, but there's probably more good news here than bad.

Checkup and Herceptin

Today I had a checkup with Dr. Korde and my second Herceptin treatment.  Thankfully, I did not have any problems with the Herceptin this time, but I did come home and sleep for three hours!  That stuff just wears me out!  A few days ago, Dr. Korde had instructed me to stop taking the Tykerb pills once again due to troublesome side effects I was having.  It has been a difficult balancing act trying to figure out how much medication to take to lessen the side effects versus too much extra medication causing a whole different set of side effects.  Today we discussed how I could better manage the symptoms and medications.  I can't say that we have it figured out completely, but hopefully it will be better.

Dr. Korde also believes that my tumor has shrunk just from the small amount of treatment I've already had. That is really great news, especially since today was only my second Herceptin and I've stopped, then started, then stopped taking Tykerb again in that short span of time!  She says I may not need to take Tykerb after the surgery, especially considering it's effect on me, but she may want me to continue Herceptin for two years instead of just one. 
 
 I have a lot of difficult decisions to make in the coming months regarding the next phase of treatment after surgery.  I received some very tough news Friday at my consult with the plastic surgeon at University Medical Center in Seattle. What they are recommending for me to do is physically and emotionally difficult, mostly because of what I've already been through the first time around.  It's a long story and a bit personal to convey on here to everyone, but it has to do with radiation and RE-reconstructive plastic surgery.  I'm trying to figure out how I want to proceed, especially since the news was worse than I thought it was going to be.  There are pros and cons, of course.  I know what THEY want me to do, but I ultimately have to make the decision.  So puhleeeze don't start offering me opinions and advice, haha!  =)

Tykerb Treatment and Effects

On July 7th I began taking Tykerb, which is a chemo pill.  The dosage Dr. Korde prescribed was 4 (very large) pills at once daily.  The normal dose is 5 pills, but since I am a smaller-than-average person, my dose was 4.  I woke up VERY sick to my stomach the next morning and it continued throughout that day into the next couple days.  I became dehydrated and weak.  Monday morning Dr. Korde's nurse emailed me to ask how I was doing with side effects of the pill.  I explained the situation and she told me to stop taking the pills until further notice and to keep in touch about how I was feeling.  It took several days for my body to recover from the side effects (including a mysterious case of vertigo and nausea), so I didn't end up resuming the medication until Friday night, July 13th.

Dr. Korde lowered my dose down to 3 pills at once daily.  I still became very sick even with the lowered dose, so they began having me take another medication twice daily to counteract the effects of the Tykerb on my stomach. Now I am starting to develop another common side effect of Tykerb, which is a rash.  It is only on my face so far and is somewhat itchy.  I'm not sure how severe or widespread it will become, but time will tell.  I have been blessed never to have had acne (even in my teen years), so this is not going to be fun for me.  I am also developing mouth sores, which are a common side effect also.  The nurse called in a prescription mouth rinse that should at the very least help me be more comfortable when eating.  It contains a numbing medication. 

Life's not too fun or comfortable these days, but I'm thankful to be alive! Taking it one day at a time. =)

Running Away, Part Final

I know this post has been a long time coming.  Two months coming to be precise, but lately I'm just trying to keep up with things like kids, wife, sleep, personal hygiene.  Pretty much in that order.

From Shaniko, we ran away to Sunriver, Oregon.  That's where we went after Anne-Marie's first diagnosis so something seemed right about returning there.

Sunriver Resort, Bend and the Central Oregon area is probably one of my favorite places.  The vast landscapes of the hight desert have a certain majesty to them that's unique, at least to our region.  And I could talk about going there for all the vacations and the good memories of times with my dad (probably about the only good memories with him).

I don't really know if location mattered in this case.

It's crazy what happens when you really make the time---really take the time--to talk.  Kids, media, life and all the survival stuff keeps that from happening most of the time.

Wherever we ended up at the end of our running, we were there with the specific goal to talk and I've always considered myself good at talking.  Maybe even somewhat of a conversationalist.  But when you really have to talk.  When you really need to talk, the words don't come as easily.

Likes, dislikes, ideas and memories all make for a good talk, but at certain point you have to deal with those other things:

1. Hopes
2. Fears
3. Wishes
4. Hurts
5. Life
6. Death

For every word spoken about the odd-numbered ones, there seems to be an equal or greater amount that need to be spoken about the even-numbered.  That's something you can't run away from.

The talks weren't easy, but somewhere along the banks of the Deschutes River and under the seductive sway of the lodgepole pines we found the strength to talk, to think, to pray and to listen.

Now we're back home and it's hard.  It's really hard.  But I know if I wasn't married to someone who was willing to be so transparent and vulnerable, this would be so much harder.

Starting Treatment (Herceptin and Tykerb)

Update from Anne-Marie's Facebook statuses this past weekend.

Friday, July 6th:

It's warm outside, but I'm missing the electric blanket. Home and in bed with severe chills and body aches after my 1st Herceptin tx this afternoon. I looked like a mummy during the tx due to being swaddled with mounds of oven-warmed blankets. 

Saturday, July 7th:

Started my chemo pill Rx last night. I was very nervous to take it and had a few tears. Been really sick to my stomach all day long today. The dosage may need to be adjusted. Average dose is 5 huge pills at a time daily. They started me at 4 since I'm a small person. I'm thinking maybe 3 would be better?!? Need to contact my Dr tomorrow.

Port Surgery

Friday, June 29th, was my port surgery appointment at Seattle Cancer Care Alliance.

Susan Good was my chauffeur due to me having to be sedated for the procedure.  I had to arrive at 9 a.m. for a blood draw and IV placement prior to surgery.

While being prepped for surgery, I developed an itchy rash which turned out to be an allergic reaction to the IV antibiotic I was being given.  It was not a fun combination to be nervous and itchy at the same time!  They promptly began a Benadryl drip which soon relieved the problem.

After that, the surgeon who was to perform the port placement came in to talk to me.  He soon began discussing his concerns about doing the procedure on someone with my history of having had a port in the same exact area six years prior and the fact that my anatomy is rather compact.  I have a lot of scar tissue in that area and there is not much room between my collarbone and the implant.  He was really trying to talk me out of doing a port at all!  He obviously did not feel comfortable doing the surgery on me and was afraid of rupturing the implant in the process.  He mentioned a couple of other options besides having a port, which are a chest catheter or a picc line.  I immediately said absolutely NO to both options.  I explained that my mom had had a chest catheter and it had been uncomfortable and difficult to maintain.  The other option he presented was to not have anything placed and just get an IV in my arm each time I go in for treatment.  That presents a risk of "blowing out" my veins from repeated IV use.  He asked me to try to make a quick decision due to their full schedule of patients that day.  I , (of course) was shocked, scared, teary, angry, and unsure of what to do.  I wished that Eli could have been there to help me decide.  I finally brushed the tears away with some Kleenex and told the surgeon to just go ahead and try it since I had already fasted, gotten a driver and a babysitter, and was prepped and ready.  I signed a paper which stated that I had been informed of all possible complications to the surgery, and they wheeled me into the operating room.

When all was said and done and I was in recovery several hours later, the surgeon informed me that he thought things went well during surgery.  What. A. Day.

An update on the treatment plan

Anne-Marie's note from Friday:

 

Very good news today at SCCA from my new medical oncologist Dr. Larissa Korde. Scans (MRIs/PET/CT/Bone scan) all looked great, no sign of metastatic cancer.

 

There is one area close to the existing tumor that they are going to doublecheck, though. Dr. Korde feels very confident that what I have is just a small local recurrence and I most likely won't even need to take chemo. =)

 

She plans to shrink the tumor down with some Herceptin IV therapy and pill therapy, then do surgery to clean up the tumor area (even though the tumor may completely disappear w/ therapy). After surgery, I will need radiation therapy and then reconstruction of the area. 

 

Of course, any of this is subject to change...thank you everyone for your prayers! I'm a happy girl!!!