Grieving Heidi's Death - Joe

It's been two and a half months since Heidi died of her metastatic breast cancer. 




Here is a link to the recording of my presentation at Heidi's Memorial Service:
Heidi's Memorial




I am still devastated.
But I am building a new life, slowly and mindfully by:

• telling everyone about how wonderful and brave she was
• asking God to help me grieve in healthy manner
• continuing the outside adventures alone, occasionally with friends
• hosting holiday dinners at home
• decorating the house in new ways for the holidays, to start a new tradition
• journaling my grief over time, on Facebook
• staying vigilante regarding both my cancers' potential recurrences/metastasis
• restarting volunteer work for church and nonprofits

My heart goes out to those of you that face a cancer battle alone.  Heidi and I had each other and our marriage got so strong through our ordeal.  I hate cancer with a passion and will try to continue supporting friends that are still fighting cancer.



Love & Blessings,
Joe

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

Handling Challenging Bad News For Us Both -by Joe

Heidi receiving her first dose of her new chemotherapy, adriamycin

 Tough times ahead..

A wonderful mystical hike on Valentine's Day

Since my last blog entry, our hopes for Heidi's new chemotherapy changed to disappointment when scans showed continued progression of her bone and liver tunors. She started weekly adriamycin this past Monday, a more toxic, more powerful chemo.

On the summit of challenging Jefferson Ridge on New Year's Day!

As with the chemo that failed, they'll have to wait 2 months to determine if this chemo is working via more scans and lab work.

My new prostate cancer is Stage 2 according to my biopsy, but during my upcoming surgery (radical prostatectomy) on March 12 they will check surrounding lymph nodes to make sure it is not Stage 3.


During the same procedure, they will go into my bladder, removing any new tumors found there.


So we have a lot to deal with. Prayer and support from family & friends are keeping us afloat these days. And humor.

Our easiest setting to pray remains on hikes in the two magnificent mountain ranges nearby. We have already done 5 hikes this year! What a contrast between a day at Seattle Cancer Care Alliance and a day on a hiking trail. 

Enjoying a beautiful creek below this beautiful wooden bridge

We need both.

We are grateful for both.
We are grateful for you.

Heading up a ridge to reach a beautiful river gorge

As always, thank you for your prayers and/or positive thoughts.. your compassion.

Love & Blessings,
Joe & Heidi

The Good News Bad News Roller Coaster Ride - by Joe

We are sitting in the Seattle Cancer Care Alliance cafe as I write this.  We are both adjusting to both good news and bad news today.

Waiting for my ultrasound & biopsy procedures.

The good news is that the specialist Orthopedic Surgeon that handles bone cancer cases wants Heidi to stay fully active.  He has the most expertise in this area and told us that the new hip/femur tumors are not a danger for fracture at this point.  Not even worth doing radiation.  Hopefully Heidi's new chemotherapy will stop them completely at this stage.

The bad news is that in addition to my recurrent bladder cancer, my biopsy report just came back positive for Stage 2 prostate cancer.  Whatever treatment I get for it has to wait 8-10 weeks because of typical post-biopsy bleeding. 


Meanwhile, we have a long list of planned hikes/climbs for this year and will continue to worship God in high places as long as we can. And in the kayak, the garden, at church.. everywhere. God's Love is as present as ever in our lives. More, actually.

Thank you for caring!

Joe (& Heidi)

Waiting for in the SCCA cafe for Heidi's Oncologist
 appointment



Taking The Battle To New Heights! - by Joe

As cancer gets scarier and scarier, Heidi and I have managed to get healthier and healthier.. eating right, losing weight, gaining muscle.  Praying like crazy.

I wish I could transport you to some of the incredible mountains we have climbed/hiked since my last post.  Now that we can manage steep trails, we've tackled increasingly challenging summits in the past 2 months. 
We also take communion on top of each one, celebrating God's love for us. Cancer is a terrible disease, where your own cells decide to turn into monsters and attack you. It is so intense. But we're finding that adventures can be equally or more intense, putting cancer in its place

Hike on!

And as always, thank you for your prayers and positive thoughts!

- Joe & Heidi

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10 Things NOT To Say To Your Friends Fighting Cancer

Heidi launching fireworks from our kayak July 4th!

This is a rough time for us.  In the next few days, we'll get results for Heidi's CT Scan, Bone Scan and tumor markers.  The scans are because of indications that her cancer is growing again.  Next week, we hear what her Oncologist recommends..and I get checked for new bladder tumors.  Scary!


The support sent our way is phenomenal - we are so grateful.


Occasionally, we get a well-meaning response that is not helpful and can actually be discouraging.  So I thought I'd list out some of the statements best avoided if someone you know is still fighting their cancer.  How do you know if they are still 'fighting'?  If they are getting cancer treatment or followups, they are still fighting.


Here are 10 things that your friends battling cancer probably don't need to hear:

1. 'We all have to die some day'  ..thanks for the reminder
2. 'You must have eaten the wrong thing to get cancer'  ..great, now I feel guilty
3. 'If you just use this supplement/eat this food, you'll be cured'  ..yeah right
4. 'Just accept it and get your affairs in order'  ..a bit premature, don't ya think?
5. ' I feel sorry for you because I had a friend who died of cancer'  ..please share survivor stories instead!
6. 'If your faith was stronger, you wouldn't need doctors'  ..so God's out to get me?
7. 'You must have sinned - ask God's forgiveness'  ..so God's really out to get me?
8. 'You can't lose - if you die, you get to enjoy Heaven sooner' ..eternity can wait a little longer!
9. 'Thanks to hospice, death is no longer painful'  ..ouch!
10. 'Don't worry, you'll be just fine'  ..at least check my prognosis in case it is dismal - but I must admit, I myself am guilty of saying this one to others!

Please don't take this as anything more than helpful advice.  If you feel at a loss for words, try these:

• 'What can I do to help?'
• 'I'm thinking of you'
• 'I'm praying for you'

But you know what?  Someone that has shown they care can say ANYTHING and we know it's from the heart.

As always, thanks so much for your 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

Chemotherapy Side Effects? -by Joe

Since Heidi and I are both experiencing chemo side effects at the same time, I thought I would jot down observations from our experiences.

The 'classic' side effects from (non-specific) chemotherapy are hair loss, nausea and exhaustion. The reason for these side effects is that classic chemotherapy targets ALL faster growing cells in the body; so, along with fast growing cancer cells, hair and stomach lining cells also get hammered(baldness, nausea), causing exhaustion as well. Heidi has endured these (but luckily only hair thinning, not hair loss) from her 2004 course of CMF and now of Navilbene+Xeloda.

Newer chemotherapies target specific parts of a cancer cell. For example, since Heidi's lung and bone metastasis in 2008 consisted of breast cancer cells that 'eat' estrogen, she was placed on targeted chemotherapy that wiped out ALL estrogen in her body (femara). In this case, side effects were more specific to the type of drug - she experienced terrible arthritis type side effects, especially in her hands, requiring two carpal tunnel surgeries.

In my case, the targeted chemotherapy for my bladder cancer is to inject a weakened Tuberculosis bacteria into my bladder each week to trick the body's immune system into attacking the bladder lining, hopefully destroying it and forcing a new, healthier lining to grow, without cancer cells. As a result, I get local symptoms of severe burning, cramping and bleeding; plus it feels like I have a bad flu.

As if direct chemotherapy side effects weren't enough, additional medicines add their own side effects. Heidi gets an oral steroid to help manage the chemotherapy; this caused two surgeries to fix cataracts caused by the steroid. She also gets a 'bone hardener' (zomeda) to strengthen the bone against weakening by the cancer..this can cause bone pain. In addition, she gets a bone marrow accelerator, to force increased production of normal white blood cells (her chemo destroys white cells) and that also causes serious bone pain.

Pretty complicated, isn't it? I guess the lesson here is that if you have a family/friend undergoing chemotherapy, expect them to have some sort of serious side effects while on chemo, even if they aren't bald!

As always, thanks for the support and compassion!

Joe

How Did They Find The Cancer?

Here's a frequent question we get. And I am glad people ask, because they might not be getting checked for cancer when they should be.

Heidi's breast cancer was discovered on a routine mammogram in 2004 - no symptoms at all. Heidi was dissatisfied with the local radiology team and asked for a second opinion at Seattle Cancer Care Alliance. SCCA found breast cancer on the other side as well, using an MRI instead of a mammogram; in fact, they caught the larger tumor which the mammogram had missed.

In spring of 2008, I started seeing blood in my urine and despite Heidi's concerns, I figured it was a weight lifting injury or something else that would clear up. So I ignored it for months. Finally it got bad enough for me to be willing to go to a urologist. They did a KUB (abdominal unltrasound) scan and found a mass in my bladder. They went in with a cystoscope and confirmed I had a large bladder tumor.

So.. please dont postpone your own routine screening (mammograms, PSA levels, etc) and dont ignore symptoms like I did. And dont be afraid of asking for a second opinion.

Here's wishing you a cancer-free life!

- Joe

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!