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

Living Strong With Bad News - by Joe

New Years Day 2012 hike up Jefferson Ridge

There's just no easy way to say it.  The latest scans are very scary.


For the first time, they've found cancer in Heidi's liver.  And now, they have found a new tumor in her right hip that affects weight bearing strength; meaning potentially hiking, walking.


So, we did a challenging hike/climb up Jefferson Ridge on New Years Day, to start 2012 out with an adventure.  We had communion on the summit.  We enjoyed the challenging route through deep, steep snow.  We took in the spectacular views.  We pray God will let us continue seeking & worshipping Him in high places like the 28 hikes/climbs we did in 2011.

Tumor Markers being drawn at Seattle Cancer Care Alliance

By next week we should know if Heidi's chemo and/or activity must change.  We should also know if the new mass in my prostate is cancer or not.


Whatever happens, we will face it together with our eyes set on God.

View of Mount Washington from Jefferson Ridge on our New Years Day hike

As always,

Thank you for your prayers/positive thoughts!

- Joe (& Heidi)

Dealing With Deadly Uncertainty

I can't recall a time since 2008 that we have faced so much uncertainty and fear.  Hopefully, we trust God with it better now and deal with it in healthier ways.

Heidi's Bone and CT scans a couple weeks ago showed 3 new tumors, on her skull, rib and lung.  Her Oncologist is not changing anything until either her tumor marker lab results or her symptoms worsen.  At that point, they will try a different chemotherapy.  Which is frightening, because there is no assurance a new chemo will even work (two others have failed in the past).

To complicate matters, last week my own, new Oncologist found a mass on my prostate.  So we are hoping it is post-bladder-chemo inflammation and not more cancer.  But we won't know until he does more diagnostics, including a cystoscopy on August 17th.  That cysto will also be the one to show whether I have new bladder tumors.

Tough stuff to deal with.  Our time investments in friendships, exercise, dieting, hiking, kayaking, joking around and more importantly, prayer.. these all make it easier to handle than in 2008 when we we first learned about the cancers.  But it is still really hard.  And in a way, living each day more fully just makes you long for longevity even more.

My own new motto I am trying to act out in this time of uncertainty:
"You can achieve serenity without handing cancer the house keys".

We love and appreciate all of you reading this.  Thank you.

- Joe

Those Really Bad Days With Cancer -By Joe

Everyone has ups and downs in life.  With cancer some of the down days can be quite low.  Last Wednesday was a case in point:

• Heidi's neutrophil count(normal white blood cells) was too low to allow getting her weekly chemotherapy dose
• Heidi's rise in tumor markers(a test for increased cancer growth) was abnormally high.  That along with her increasing tumor site pain implies the chemotherapy might be failing to stop cancer growth
• We found out we'd enter the infamous Medicare 'hole', where the expensive chemo and other prescriptions are no longer covered until we reach a much higher 'level'
• Upon returning home, we found that our neighbors' dogs had broken in to the chicken pen and killed all four of Heidi's hens

What do you do on a day like that?  Cry? ..of course.  But this amazing lady also chose to complete a very steep hike up Tiger Mountain and to laugh at my dumb jokes.  And sing.  And pray.

I consider my faith in Christ fairly strong and growing each day.  But wow!  Watching Heidi's faith in action is humbling indeed.  We may be facing a very difficult chapter in the battle, but there are many more mountains to climb and songs to sing.

As always, thanks for your compassion, your prayers, your positive thoughts!

-Joe

Happy Birthday To Me -by Heidi

Here I am getting chemo on my Birthday.

On the one hand, it is just another Wednesday and on Wednesdays I get chemo. But on the other hand, it is a special day of celebration. When I was first diagnosed, the prognosis was grim. So, turning another year is great cause of celebration. Looking back (as one does at a milestone), I am so thankful for the things I have learned this past year. I am so much more willing to trust God for the future, as well as to delight in each day as it comes... even the bad days. I actually thank God for the painful times now... because I know that it is in the painful times that I am willing to lay aside my attempts at control, my "to do" lists and just decide to celebrate the fact that I can feel pain: my nerves are working, my brain is working, I am breathing. And I REALLY celebrate the good times.

I am so thankful for family and friends. They/you have been such love-ers, pray-ers, supporters. I don't deserve you, but I am grateful for you. I am SO thankful for Joe. We have gone through some tough times. Watching him desire to serve God inspires me to work on the issues that keep me from serving God as well as I can. He walks this road with me with humor, grace and love.

Sigh, I am getting maudlin. I am just so grateful for this last year and for the FACT that I am doing so well. I would love to get off of chemo, I would love to have a healthy body. Maybe that is in the future. Maybe not. But this new year of life promises to be one where I continue to grow healthier inside... where it really counts. As our Pastor Kurt says, "God promises complete eternal healing spiritually, mentally and emotionally; the only healing that is temporary is physical".

Thank you again for listening and sharing my Birthday with me. I think the world of you.

Bless you indeed,

Heidi

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 Can You Support Your Friend Or Family Battling Cancer?

One thing is for sure - the support from friends and family, online and offline, has been critical to us both! So much compassion out there!

Both receiving and giving support becomes a challenge for everyone involved. There were times when both of us could not handle any offers of support; we turned the phones off and just hid from the world immediately after hearing bad news. For friends and family, there were times when our cancer was too much to deal with, too uncomfortable. That's all healthy!

So, what are some suggestions for family and friends wanting to be helpful and supportive? Based on our experience, I do have some simple advice:

1. Get rid of any stereotypes you have about cancer patients and what they need (meals, cleaning, money, a driver to the hospital, etc.) ..instead, just ask "Please let me know if there is anything I can do to make this easier."
2. Offer positive thoughts or prayers, depending on both yours and their religious or nonreligious view of life. That's powerful. This is validated by summaries of recent medical research into the measurable impact of prayer/positive thoughts on cancer.
3. Try to let go of feelings of helplessness, guilt or fear you might experience when you hear about someone's cancer diagnosis or treatment failure. Doesn't do anyone any good.
4. Listen. A cancer patient at some point needs to talk about it. Be ready to listen.

That's it. If you are reading this, it is because you must care. That makes you qualified.

Again, huge thanks to the amazing people that have and continue to support Heidi and myself!

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!