Tough Times Ahead For Heidi - by Joe

Waiting to hear the tumor marker results

Yesterday's (April 2) tumor markers (labwork that tracks her cancer) confirmed that Heidi's adriamycin chemo has not worked and her cancer is growing.  So they stopped that chemo and told us to wait to hear what her Oncologist plans next. 



Meanwhile I was having increasing pain from my surgery and my Oncologist ordered a CT scan yesterday, which showed the post cancer surgery drain was not working.

After the bad news, staying at the SCCA House

Today, I had outpatient surgery to place a deeper drain that will hopefully work better.  When we got home from my surgery, Heidi's Oncologist contacted us with thier plan: MRIs to establish a baseline of Heidi's current cancer status and then starting another chemotherapy called taxol.

Waiting for my outpatient surgery

As you can see from the photos, we pray, we laugh, we cry.  When I get scared about Heidi I remember the amazing hikes and climbs we've done since Spring of 2011 (almost 40!).  She's tough, she's determined and I plan on supporting her better and better as God shows me how.



No despair.  None. 
Pray..  Laugh..  Cry..

Thank you for caring,
Joe

A Look At Cancer From The OUTSIDE -by Joe

..as in Outdoors! 

There are many weapons in our arsenal against cancer.  We are grateful for a long list:

• world class Oncologists & teams
• prayers from family/friends of faith
• positive thoughts from family/friends who are agnostic/atheist
• financial assistance from Medicare, insurance and family
• support and advice from other cancer patients & survivors
• getting in top physical condition via exercise & diet

But another very important aspect is our increased hiking & kayaking.  What wonderful places we have been this year!  Hiking trails high in the Olympic Mountain Range.  Other spectacular hikes in the Cascade Mountain Range.  We've also begun a tradition of taking communion together on the mountain summits we reach.  Our faith and hope get such a boost from alpine heights and majestic Northwestern forests.  In the kayak we get to see so much wildlife, so many beautiful scenes. 

If you are fighting cancer or doing all you can to stay in remission, we urge you to find an outdoor activity you love and take the time to enjoy it!

As always, THANK YOU for your continued caring & support!

Love & Blessings,
- Joe

God, Why Us? - by Joe

Many, if not all cancer patients at some point wrestle with the question, "Why me?"  ..as do cancer patient spouses/significant others.  Personally, I do not think there is an adequate answer to this, or the more general question "Why is there suffering?"  A more practical issue is how you handle the question when it surfaces inside.

In our case, we had just spent a small fortune remodeling our old house in order to pass inspection for fostering-to-adopt a child.  Then boom!  Cancer.  Adoption was no longer a possibility.  Along with that heartbreak came confusion: neither of us have family histories of cancer! So why, why, why?

As Christians, we aimed the question at God.  Were we agnostic/atheist it might have been railing at an unfair Universe.  Either way, ignoring it just makes depression worse. 

I think for both of us the question was a muddy mix of self-pity and sincerity.  Emotional and intellectual.  The answer has to be a personal one to move on, not some theology or scientific hypothesis. Amid the amazing theories well-meaning friends hurled our way (sinning, eating the wrong foods, stress, pollution, bad water, etc.) we have both achieved some sort of answer.  I see it as a mystery and an opportunity to choose solidarity and empathy with others' suffering.  On top of that, I think we both see cancer as just one of many realities from living in a 'fallen world' based on Jesus's teachings in the Gospels. 

The benefits of facing the question we've found are many: less depression, less feeling sorry for ourselves, less energy drained, less despair.  Not that the question doesn't still sit there.  But there is a healthy truce.

For anyone reading this that is newly diagnosed, I urge you to wrestle honestly with the question and don't pretend it's not there.  Keep wrestling until you find an answer you can live with.

As always, thank you so much for your amazing support!

Joe

Laughter Is Medicine -by Joe

Balances.  Tears seem healthy to me in a cancer patient unless they become self-pity.  Anger also seems healthy, if it's aimed at cancer cells, helping motivate the battle.  You see both at a world reknown treatment facility like Seattle Cancer Care Alliance.  But not much laughter.  We, among others, are working on that in our own little way.

The picture shows Heidi doing a hilarious 'housewife' commercial for her 'favorite' brand of scan dye in the SCCA lobby, the day she got a Bone Scan and a CT Scan shortly after diagnosis.  A couple months later, when I got diagnosed, we started an ongoing routine arguing about who had the prettiest tumor(s).  I remember times we'd read about some food or household item being carcinogenic, and one of us would say "Oh no! We might get cancer!"  I think regarding cancer itself, we both have developed a good 'sense of tumor'.

Even if someone doesn't like joking about cancer, there are plenty of reasons to keep laughing in life after diagnosis.  Funny movies to watch.  Loved ones to tease.  Pets to play with.  Even in the chemotherapy rooms, the excellent, professional staff have great senses of humor available to patients and families that are interested.  SCCA offers a free 'Laughs at lunch' series of comedy films for families & patients.

I saw an interesting research article at the Fred Hutchinson Cancer Research Institute website exploring the potentially healing, strengthening effects of laughter in cancer cases.  One mechanism was the release of the body's natural endorphins.  So when you hear a statistically significant punchline, chuckle!

As always, thanks for the support!

- Joe

Staying Upbeat With 'MiniCelebrations' -by Joe

We get lots of encouragement for our habit of pre- or post-chemotherapy 'dates'..often a cafe or a hike on chemo days.

The tradition really started on the horrible day in May 2008 when scans showed that Heidi's breast cancer was back, spread to both lungs and her bones.  After an emotional upheavel that day, we staggered down to the waterfront and committed suicide..by chocolate!  At the BluWater Bistro on Lake Union we ordered a 'death-by-chocolate' dessert that was so huge we couldn't even finish it.

From there, we expanded the idea of adding fun to cancer center visits to include hiking, trying new cafes, ferry rides, photography walks, the Seattle Aquarium, etc. 

Looking back since that momentous chocolate dessert, I am so grateful for the 'live each day fully' reminder these dates have reinforced!

And a huge thanks to so many friends and family that have cheered on this mini-celebration tradition!

- Joe

The Patient's Spouse - by Heidi

Either of us could have writtten this blog but my experience is more recent - I wanted to be the one to write.

When Joe was re-diagnosed with bladder cancer, after 2 years, I could not believe it. Here was the doctor pointing out all these tumors on the scan. I have been a cancer patient for almost three years. This, the second time I am a cancer spouse, demonstrates to me (again) that being the spouse/partner/caregiver of a loved one with cancer is VERY hard.

You want to wave a magic wand, take away every fear and painful experience....but you cant.

You want to find the magic treatment that will return them (and your life) to the pre-cancer days.....but you cant

You hover, you do for them, you dont talk about difficult subjects, you pretend.......and they feel cut off and like a child.

You don't take care of yourself, you ignore tasks and duties that seem suddenly non-essential. And yet, as they need ot focus on their treatment, suddenly you have MORE things to do, including things that they used to take care of. And you need to learn a whole new world - medicalese, insurance mazes, drugs, specialists upon specialists. It is overwhelming.

To make it worse, people who love you dearly focus on the person who is sick. But you are hurting and struggling too. I remember the first time someone really asked me how I was doing after Joe's cancer returned. I burst into tears. I am so grateful to this day for her love and hugs and prayer in response. I wanted so much to be strong for Joe but if I dont recharge.... I cant.

I've been learning:

• Joe wants me to share my fears and pain and struggles with him, just as I had before his diagnosis. I don't need to be superwoman - just me.
• I need to take care of myself or I cant be a good partner to him
• There are a lot of people professionally able to help. Use them for your medical, legal and financial issues. Ask to talk to a counselor or social worker or chaplain. Ask, ask, ask.
• Ask for help from friends and family and neighbors. They usually want to help but dont know how or what. Ask for specific things that really DO make you feel better. A friend chatted with me while she cleaned my refrigerator.

- Heidi

Welcome To Our Cancer Battle

Hi.

I am Joe. My beloved wife's name is Heidi. We both fight cancer. I am starting this new blog to tell the world what it's like for us, what we're learning and to beg for prayer. It's been quite a rollercoaster ride:

• July 2004 Heidi diagnosed with Stage2b breast cancer - two lumpectomies, radiation and chemo completed by 2005
• May 2008 Heidi diagnosed with Stage4 metastatic breast cancer (spread to bones and lungs) - chemo started
• August 2008 Joe diagnosed with bladder cancer - removed via TURBT
• January 2011 Joe diagnosed with 14 new bladder tumors - removed via TURBT and intravesical chemo started (BCG)

What is it like?
Each diagnosis, each treatment failure is like getting kicked in the gut by a mule. You can't breathe, you can't move, you just can't believe it. In two days I will hear the results of the biopsies from my bladder cancer surgery last week. In three weeks we will find out if Heidi's chemo is still working. Life on the edge, permanently.
Thanks for stopping by!