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



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)

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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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

The Strange Cancer Vocabulary -by Joe

One of the many things you're not prepared for after diagnosis is the medical terminology used in cancer treatment.  As if cancer wasn't scary enough, all these big and bizarre terms & phrases get thrown at you:

neutropenia, monoclonals, stem cells, receptors, her2, fsh, papillary, psa, hematopoietic, epithelial, ionizing, lymphatic, oncogene, platelets, metastatic, staging, hematuria, apheresis, thrombocytopenia, infusion, ductal, germ cell, pluripotent, fibroid, nodules, mass, p.e.t., c.t., mri.. ARGH!

On the lighter side, here's a look at some of the really strange terms:

1. Flush - (do it to an I.V., not a commode!)
2. Void - (huh? oh..urinate!)
3. Power Port - (where Superman lands? no, a 'permanent' access under the skin for labwork & chemo)
4. Emesis - (Superman's arch enemy? ..actually, it's throwing up)
5. Code - (something geeks write? nope. a cardiac or respiratory arrest)
6. S.O.B. - (an insult?? hahaha, it's shortness of breath)

It took me years to learn all the terms necessary to order an espresso drink. This is worse!

Hopefully, you'll never have to learn this language.

As always, thanks so much for your support & compassion,
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

"Insurance Companies are Evil !" -by Heidi

A colleague of mine who worked in the charging/billing department of my hospital used to always say that. She had worked on the insurance side for three or so years and switched to the hospital side when she got fed up. She taught me that insurance companies consider their stockholders their customers, NOT the patients. Patients are PPUs (profit producing units). I didn't believe it at first but, now I definitely believe that insurance companies are not on my side. They are pleasant, but have their own agenda.

When I got cancer I thought: I am intelligent, English is my first language, I have 30 years experience in the health care field.... the financial part will not be hard. But it has been the MOST time consuming and frustrating part of our medical experiences. We are very fortunate that we can pay our bills, thanks to generous family support; and so far, I have not actually yelled at anyone. I don't know how people who are going through their cancer experience by themselves, dealing with their fears and side effects, do it. Get support, yell for support, seek support. You do NOT need to do it alone.

From making sure everyone has the correct insurance info, to assuring that the provider is billing for what actually happened, to navigating through the inevitable denials and appeals processes.. it all takes time and a clear brain and lots of patience and follow through.

And then there are the non-medical costs: lost work days, costs for you and your significant other to park, eat, & purchase items that make your life easier but are not directly reimbursable (over the counter meds, dressings) the list goes on and on. We have some friends who are down from Alaska for his intensive treatment. They had to find an apartment, their kids moved to attend a school down here, he couldn't work; they are amazing in their flexibility and attitude, but finances have been a huge issue.

Things I have learned painfully that might be helpful to you.

• When talking to a provider's financial people or insurance people, write down name of person you talked to, date, time and content of discussion. Get their direct phone number. Make sure they know that they can leave info on your voice mail.
• Ask them "what exactly do I need to do to get this fixed" and then read back to them what you heard them say and have them say that that is exactly what they said.
• Try to match the info from your insurance company EOB with the provider's info (and your memory/notes)
• Take a deep breath, let the stress go, take another deep breath.
• Ask your cancer center for any avenues/organizations helping with costs or winding your way through the mazes. Ask your friends, ask online patient forums. We have gotten help with some of the big drug costs for me and that has helped us a lot.

I know others have helpful hints as well. Please feel free to share them.

As always, even in this area of our lives, we are so grateful for YOUR support, prayers and love. We couldn't do it without you.
- Heidi

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

The Waiting Game -by Joe

One of the toughest aspects of cancer has gotta be those times of waiting for news, waiting for results.  Scans, X-Rays, labwork, appointments, whatever ..it can drive you crazy!  And until the doctors proclaim you cancer-free, it gets increasingly hard not to expect bad news, bad results.

In the photo is "Blu", an amazing service dog, patiently resting on my shoe at Seattle Cancer Care Alliance's 5th floor chemotherapy lobby while his loving owner, Sheryle, visited with Heidi during her chemotherapy.

Heidi and I are slowly learning to wait more like Blu does.  He is patient, loyal and never gives up no matter how long he has to wait.  And Blu's ability to patiently, obediently wait required training.  It's the same for us.

Yesterday and today are good examples.  Heidi's initial labs look bad and we have to wait for the final results.  I started having symptoms again a couple days ago and am getting tests run on me to find out why.  Hopefully, both are false alarms but we have to wait to find out.  And maybe, just maybe, we are getting a little better each time..

As always, thanks for your support! - Joe

A Cancer Center Chapel 'Revelation' -by Joe

Last week, I was really getting nervous as they started Heidi's second chemotherapy drug in Seattle Cancer Care Alliance's chemo rooms.  Heidi encouraged me to go down to the Center's chapel so I did..

As I sat in the chapel trying to shut up my noisy thoughts and simply be in God's Presence, a remarkable thing happened.  Back in 1981, I foolishly climbed one of Colorado's 14,000+ mountains called Little Bear Peak in the Sangre de Cristo range.  'Foolish' because I was untrained, doing it alone and without a helmet, rope or any way to call for help if I fell.

In the chapel, the vivid memory flooded back of making it up Little Bear Peak's deadly gully called the 'Hourglass' and once I finished that stretch, I was terrified at the prospect of going back down.  Now up until then, I had established a tradition on the previous (& easier) 14er peaks in Colorado of celebrating communion and praying for at least an hour when weather permitted, on each summit.

Looking down that Hourglass chute, convinced I would die on descent, I was faced with a choice.  Should I spend the time on top or immediately take my chances descending?  I chose the summit view/communion. To this day I believe that choice saved my life.  The descent was hair-raising, still no other climbers on the peak to ask for help.  I did slip several times on the steep, slippery slabs of stone.  But I sang all the way down.

The lesson:  we will ALL face deadly danger in our lives, whether from disease, violence, despair, etc.  But the choice is always there.  Will we spend available time with God or ignore Him and desperately obsess over the danger?

Cancer is Heidi & my danger these days; but since that day in the chapel, I am constantly reminded of a welcome place of peace I can find on an inner mountain summit, whether either of us prematurely die on the 'descent' or not.

As always, thanks 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

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!