Knowing who you are -by Heidi

Spending time in SCCA's Chapel

I have been spending a fair amount of time lately hanging out on the couch. Somehow I envisioned being productive while being on the couch. I thought, "ok, so you are not energetic, you can still read, you can talk on the phone, you can knit, you can pray". But reality (as usual) has not been so rosy. When I feel bad enough to lay on the couch, it is like a horrible cold with malaise. I don't want to do anything. And if I force myself, it comes out badly. I lose track of the conversation when I am talking with a dear friend. My knitting needs to be pulled out because I didn't notice mistakes. Words don't flow they way I want when I am trying to write a note. My concentration is WAY down so I will forget in the middle of a prayer what I am praying. This, by the way, is where reading a prayer written by someone else or reading scripture helps me. God has to just manage with prayers He has heard before :) !

Support from SCCA's Chaplaincy Director

This has brought me back to my insidious expectation that who I am = what I do. I know in my head what a lie that is. My emotions and self-image are slow to come along. I have appreciated James Pyles blog for several years but this one really hit me between the eyes. Especially his quote from Rabbi Tzvi Freeman and exposition from it.
"From a point before and beyond all things, G-d looked upon a moment in time to be, and saw there a soul, distant from Him in a turbulent world, yet yearning to return to Him and His oneness. And He saw the pleasure He would have from this union.
So He invested His infinite light into that finite image, and became one with that image, and in that image He created each one of us.
As for that moment He saw, that was the moment now.
-Rabbi Tzvi Freeman
“G-d’s Image”
Based on letters and talks of the Rebbe
Rabbi M. M. Schneerson
Chabad.org"
This quiets my emotions, reminds me that all doing comes from God's being, not my scurrying around checking off lists.

 Thank you James. http://mymorningmeditations.com/2012/04/19/the-journey-of-gods-image/

- by Heidi

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

My Prostate Cancer Ordeal - by Joe



At Heidi's weekly chemotherapy at Seattle Cancer Care Alliance

On top of my bladder cancer, a biopsy on January 10 by my famous Urologic Oncologist showed Stage 2 prostate cancer.  The last thing we needed - 3 cancers between us!

After thinking about the options Dr Dalkin gave me, I decided my survival and ability to best support Heidi would be with an open radical prostatectomy.

March 11 was so much fun(ha!), limited to 'clear liquids' and several nasty 'cleaning' meds, like Magnesium Citrate. I alternated between stress and calming contemplative prayer.  Heidi was such an anchor that day/night!

About to enjoy gournet Chateaux de Mag Citrate :-)

On March 12 I had the surgery, which included a few extras:

• A cystoscopy to check for new bladder tumors (none found)
• A repair of an inguinal hernia I was not aware of
• A mesh inserted to fix a hydrocele
• Some sebaceous nodules removed. 

Along with removal of the prostate, lymph nodes and vesicles were also removed and sent to pathology. Dr Dalkin joked with me afterwards that he had done a complete 'overhaul' of my abdomen.  He was able to spare both nerve bundles next to the prostate, which will reduce my odds of longterm impotence.


On the day of my surgery, Heidi had her Oncologist appointment at SCCA and her weekly chemotherapy.  The next day, during my first day of hospitalization, she had an MRI and met with a bone Oncologist to find out if he saw hip tumor progression on the MRI; thankfully none found!


But her last tumor markers were elevated, after getting 2 rounds of her new chemo adriamycin.  Scary.  The next tumor markers will hopefully show a drop, which will mean the adriamycin is effective.

Heidi spent that uncomfortable first night with me in the hospital, a comfort during my wracking pain.  The next night she caught up on sleep at the SCCA Guest House.

Recovering from my prostatectomy and Heidi's scans & chemo

After 2 nights in the hospital I was sent home.  Because of the added procedures during surgery I'm now in a slow, painful recovery; and stuck with drains for at least 10 days. And Heidi is exhausted from her intense 2 days of MRI/chemo/appointments.


Pathology checked that no cancer was in the nodes or on edge of the prostate, which would mean remaining cancer after surgery. Completed today, March 16, the report showed all was clear, giving me a 95% survival prognosis. And as long as I keep followup cystoscopy appointments to check for new bladder tumors, I have a great prognosis for that cancer as well.


We are so grateful for God's love during this, for the amazing SCCA/UWMC medical teams and of course for your compassionate support.


We hope to fight this monster and have a long life together serving God, building relationships and hiking/kayaking our butts off!


Thanks for caring.


Love & Blessings,
Joe (& Heidi)



Called To Be Quiet -by Heidi

I am definitely in a new place in my walk with God. He has been telling me for some time now that I am called to be quiet. I am still not quite sure what that means. I have been trying to do contemplative prayer, hiking and praising God in nature, building an attitude of thankfulness for each day and to give myself permission to let go of all the "to do" activities that I see around me or want to participate in. That has gotten me part of the way. But this ratcheting up of our distressing circumstances (the failure of my moderate chemo causing me to move to a much stronger chemo to combat growing cancer in my liver and bones; Joe's diagnosis of a second kind of cancer leading to a radical prostatectomy complicated by an additional surgery for possible bladder tumor removal in March) has caused me to seek more.

How DO I Glorify God when my brain is foggy, my body hurts, I grieve for myself and my beloved husband? Somehow, I always thought, "well, if I can't DO anything, I will be quiet and lay on the couch and pray and read and write encouraging letters to people". Doesn't that seem holy? And yet, the reality on those days is that I can't think well enough to pray, I have little energy to read anything more difficult than light fiction and I can't put words together to write to anyone. I don't even want to talk to anyone on the phone.

So I sought God's answer. A friend reminded me of a castle in her part of England that was besieged and it fell because it's source of water was outside it's walls. I asked God to remind me of more ways He could strengthen the well of life within me. I thought of the children's song: " Spring up Oh Well, within my soul. Spring up Oh Well and make me whole. Spring up Oh Well and give to me, that life abundantly".

Also,

Act 2:4 And they were all filled with the Holy Spirit, and began to speak with other tongues, as the Spirit gave them utterance.
Rom 8:26 Likewise the Spirit also helps our infirmities: for we know not what we should pray for as we ought: but the Spirit itself makes intercession for us with groanings which cannot be uttered.

Original photo by artist Sid Armstrong
sent to us as a symbol of hope.

So I am adding a time of using prayer language to my daily time with Him. So far it seems helpful because: I don't need to be intellectually steady, all of it is from Him, it requires nothing but obedience from me, and I am strangely calmed and strengthened by it.

Thank you again for your prayers and support of us.
We know we could NOT make it without you.

Love & Blessings,
Heidi

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



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)

Facing Tough Days With Gratitude -by Joe

Our Quiet, Peaceful Thanksgiving Dinner

Heidi's spinal scan I mentioned in my last blog was frightening: new tumors on both her upper and lower spine, but thankfully none of them pressing on her spinal cord, which would cause severe pain.

And today, during our weekly appointment at Seattle Cancer Care Alliance for Heidi's chemotherapy, they plan to do an MRI of her legs, to rule out any new tumors there. Also frightening.

Last week, we met with the Oncologist who said Heidi's chemotherapy would need to change if any one of three things happen:

1. any tumors reported on today's scan
2. any increase in pain
3. another rise in her tumor markers

Kayaking Away Some Stress

On top of all this, I get rechecked in two weeks for any new bladder tumors.

So it's tough, really tough right now.  So much uncertainty.. when will her chemo change? will the new chemo work? what will the today's scan show? will they find new tumors in me? will I have to have another surgery?

Tough times are a great chance to practice gratitude for what you do have. 

My gratitude list, written on Thanksgiving Eve last week:

4am, alone by the fireplace, feeling so grateful.

• They said 12 months and now over three and a half years later, Heidi and I are still together, loving the life God has given us.
• I'm grateful we are getting healthier, stronger and feeling younger month by month, despite cancer.
• I'm also flooded with gratitude for our family and friends, like you.
• For the freedoms and material comfort we too often take for granted.
• For jokes and laughter.
• For art and music.
• For the amazing wildlife, flowers, trees, mountains and waterways where we live.
• Wow!

Big Creek Trail Overlook

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

- Joe & Heidi

No Looking Back -by Joe

We are approaching some major milestones.  Wednesday Heidi gets a spinal scan to check for new tumors and also gets her tumor markers checked.  A few weeks later I get checked for new bladder tumors and the new mass in my prostate checked.  Expecting good results on all three, we're not letting worry take over and not worrying about past results - no looking back!

We're both a bit sad that snowfall has closed off the high elevation, steep hiking trails for the winter.  What an amazing set of 22 outdoor adventures since May!  But now we can explore lower elevation river trails, and later do some snowshoeing - no looking back!

In our walks with God, we're learning the same thing.  Letting go of past doubts, expectations, bargaining, mistakes... Learning new ways to trust God and approach Him through contemplative prayer, we are excited about a growing, stronger, closer relationship with our Creator - no looking back!

As always, thanks for your kind encouragement, 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

.

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

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

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

Clinical Trials: Love 'Em, Hate 'Em

I am so in support of clinical research. After all, that is one reason why I am doing so well. I have options for treatment with success rates because of clinical research. So when I was asked to participate in a Zometa (bone strengthening medication) study, I was glad to oblige.

This is a randomized two arm study, aimed at cancer patients receiving Zometa. This means that neither I nor anyone who touches the drug (pharmacy, clinical staff, researchers) will know if I am getting Zometa every four weeks or every 12 weeks. The two arms means there are just two options. 1) getting Zometa every four weeks, or 2) getting Zometa every 12 weeks and getting a placebo (an inactive substance that will LOOK like the active drug) the two months in between.

So, I love the fact that I am helping research. I love the fact that this expensive drug will be FREE to me for the next year (the length of the study). The staff and researchers are unfailingly polite, pleasant and friendly.

I hate that I have to do extra xrays/scans/ blood draws. They are free to me also but they take time, I am exposed to more radiation/radioactive substances and I have to wait around more. I guess I didn't think through the reality that not everyone is available on Wednesdays so I am having to drive to Seattle an extra day. They had scheduled me to come to Seattle three days in a row but I absolutely refused that! They managed to get some of the stuff onto Wednesdays after that. But last week I spent ALL day at SCCA waiting to be called for tests, getting tests and being surprised by having to do more tests than I remembered reading/hearing about. Probably I just didn't pay enough attention when the coordinator went over it all. But I really wanted to go on a hike and felt put upon because we spent the day at SCCA instead.

All in all, I am glad I am doing this study. Just venting about the reality of the process & wanting to share what it's like.

As always thank you for your prayers, your support.

- Heidi

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

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

Half Empty or Half Full? -by Joe

Heidi's weekly chemo dose (navilbene)



One of my online friends, Gerry, reminded me of the interesting challenge as to whether one sees a glass 'half full' or 'half empty'.  She's the 'half full' type.  We can choose optimism or pessimism when faced with challenges.

I think of this now when sitting with Heidi in Seattle Cancer Care Alliance's chemotherapy rooms every week.  I used to want to get out of there as soon as possible, so would watch the IV infusion bag containing the chemo slowly empty.  About halfway, I'd think 'This is taking forever!'  Now I am reminded to ignore the time remaining and instead be grateful that such lifesaving medicines are available.. a 'half full' optimism.

I hope I learn to make the same choice in every area of my life.

As always, thanks for your compassion and support!

- Joe

"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

Treatment Options - by Joe

What if you or someone in your family gets cancer?

What kind of options are out there to be treated and hopefully cured?
That's really a tough one.  Survival emotions go into high gear as soon as they even suspect you have cancer and they just escalate from there.  So it's hard to be objective, even though you want to find out how best to survive this monster. Here are the best sources of information in my opinion to make those tough decisions:

1. Your medical/surgical team: most cancer centers will arrange an initial meeting 'with the team' to lay out their proposed treatment of your newly diagnosed cancer.  At Seattle Cancer Care Alliance they actually taped the session, knowing that most patients can't remember clearly what was said because they are so upset and afraid.  I strongly suggest you let them know you need time to think about their proposal and and ask how to get all your followup questions answered before proceeding.
2. A second opinion: like Heidi said in her blog entry last week, it's your life!  If you are not comfortable for whatever reason, go to a different cancer center until every single question you have is answered satisfactorily.
3. Other patients' experiences: most cancer centers will have patient & caregiver resources out in the community and/or online communities where you can ask other patients about chemo, radiation, surgery, etc.
4. Books/medical journals: libraries have a lot to offer and most cancer centers offer 'resource centers'.  The downside is that by the time a book or article is published it might be out of date in the world of cancer treatment!
5. Online information: be careful with this one!  There is so much bad information about cancer online it is scary.  I suggest you limit your searching online to information that is backed up by well conducted research.

Here are the actual options you will probably come across:

• Surgery - most solid mass tumors will need to be removed surgically.  Heidi and I have both had multiple surgeries (ouch!).  Surgery for cancer isn't going to be that different from other surgeries, so isn't such a new idea to someone just diagnosed.  In some cases, the surgery causes disfigurement and you want to know that before the procedure (loss of a visible body part like mastectomies, the possible need for a permanent external drain as with cystectomies, etc).  In my case, I told my surgeon that no matter what he found in surgery, he was NOT allowed to remove my bladder because I wanted time to consider that extreme option and would prefer to wait.
• Radiation - many cancers, depending on the 'stage', are fought with radiation targeting the cancerous area, like in breast or prostate cancer.  Radiation may also used to alleviate pain caused by cancer (cancer spread to the bone for example).  Think of an ongoing, very bad sunburn during the radiation treatments.
• Chemotherapy -  this area is changing all the time, with new types of chemo in research (monoclonal, combination, immunotherapy, etc).  A key question to ask is about the trade-off between side effects/quality of life versus efficacy against the cancer.  For example, would you really want terrible, constant nausea if a chemotherapy probably only offered 3 more months of life?  Heidi's first oncologist was unsympathetic regarding side effects because it was 'saving her life'.  Her current oncologist is completely different, trying to minimize side effects continually to guarantee Heidi as pleasant a daily life as possible.  So she listens very carefully to what Heidi says about side effects and offers alternative chemotherapies when possible.
• Transplants - bone marrow transplants, organ transplants, stem cell transplants are all lifesavers in certain types of cancer.  And they have come a long way in recent years.  You'll want to ask about the pre-transplant preparation and also the kinds of medicines required afterwards to gauge the impact on your daily life.
• Experimental treatment - an advantage of going to a cancer center that is very active in research is the potential of participating in a trial or access to a promising, experimental treatment.  In 2004, Heidi was able to receive a new chemo approach called 'pulse therapy' that minimized side effects.  It was in research at that time and her oncologist was the main researcher.
• Alternative medicine - you will hear dozens of 'cancer cures' from well meaning friends and family.  Very few of these 'cures' have invested any of their profits into proving their claims with research.  Why should they?  Cancer patients are desperate, right?  Don't get me started.. When someone recommends something, please head to http://www.quackwatch.com/ ; if the item is not listed, drop them an email.  That being said, we both do use supplements that our medical doctors have approved (some supplements can actually ruin chemotherapy efficacy - for example high dose antioxidants would have rendered Heidi's chemo useless in 2004).  And Heidi has used a 'cancer naturopath' that works in conjuction with her oncologist.

What a minefield!  But it's worth it to find out all your options..
Thanks again for your wonderful compassion and support!
- Joe

Building Your GREAT Cancer Team - by Heidi

When I was first diagnosed with metastases from my breast cancer, we went to visit some neighbors. They had both been diagnosed with cancers over the few years before and we asked them some questions about how to deal with cancer. I will never forget the wife's vehement response. "Remember that YOU are in charge. If you dont feel comfortable with a healthcare team member, fire them... get another. Build your team based on what YOU think you need." I was shocked. While I had done some elements of this six years ago at my initial diagnosis, I still had a very compliant "just tell me what to do" people pleasing attitude. Now three years of being immersed in the metastatic cancer experience, I heartily agree with everything she said.

Livestrong (http://www.livestrong.org/) as well, has some wonderful resources and I love what they say. "If you can talk openly to your health care provider and get your questions answered, you will feel confident about the health care you are receiving." Feeling confident and secure means I have a better chance of beating this.

I have built a team that I feel really comfortable with - but it took a little while. My status now: my oncologist worries about my "state of living" as well as the state of my cancer. I have an oncologic naturopath that I consult with occasionally about new non-prescription aids to fight cancer. My oncologist does not "believe" in these, but she is supportive of my wanting to look at all possible treatments of this horrible disease, and gives rational explanations if there is a supplement she does not want me to take. My cancer center provides social work, chaplain and nutrition support for me as needed. My infusion nurse has become a valued friend and resource.

But when I was first diagnosed, I changed cancer centers because at the first one: the technician seemed really fumbly, the radiologist spoke to me like I was a child, (even after I said that I felt like she was talking down to me) they had problems finding my reports and responding to my questions; it just left me feeling nervous and like I needed to micro-manage my care. I liked the second center a lot (went back to them when my cancer metastesized) but still changed oncologists and gave feedback when things seemed more focused on their needs and less on my needs.

I am not saying to be a petulent child wanting their own way all the time. But it is MY cancer that is being treated, MY life that is being hugely affected, My finances that are going in the toilet. At the end of the day, they go home from their job. Joe and I never get a break from this, it is a 24/7 experience.

The non-medical part of my team consists of family, friends, the Body of Christ believers... all those who bless me, pray for me, support me in so many ways. Their love, care and acceptance keep me positive and hopeful.

Be bold and speak up for yourself. Trust your gut. Build YOUR team. You will be so glad you did.

And as always, thank you so much for your support!

- Heidi

Why Cry? - by Joe

Heidi, awaiting chemo at Seattle Cancer Care Alliance

I remember in 2004, when Heidi was first diagnosed with Stage2 breast cancer I asked her how I could support her.  Although I don't remember the conversation exactly we had with another person, I'll never forget Heidi's response.."I don't want Joe crying or showing weakness - I need him to be strong!" 

I believe Heidi was hanging on to hope and determined to beat this monster so she wanted me to exert that same strong determination.  I tried to do it. 

The shocking return of her cancer in 2008, now Stage 4(metastatic) changed the rules.  We expected only a year together based on her oncologist's words.  My tears became not a symbol of despair but of caring, support.  I can't remember how many times we collapsed in each others' arms, stunned that she had fallen into the 15% treatment failure statistic. 

And when I got cancer 3 months later I encouraged her tears, & more falling in each others' arms.  When Heidi is asleep from side effects, there are 3 mighty cedar trees on our property that welcome me to curl up against their roots, pouring my heart out to God how badly it hurts to see this vibrant woman I cherish facing death from within her own beautiful body.

Whether cancer tears are from fear, from grief, from releasing future dreams/hopes.. if you hold them in they become another type of cancer, eating away at your soul.  If you have cancer or have a loved one with cancer, please fight despair but welcome tears.

As always, your support for us is a priceless gift!

- Joe

How do you keep Hope? - by Heidi



A gift from our dear friend, Alex



Sometimes when Joe and I hit a wall, we can see that hopelessness and despair is lying in wait.  And to be completely truthful, sometimes we would usher them in and indulge. "Why me?"   And yet it is true that hope is evidence of things unseen.  And that means that within our materially based culture, we have to trust something that is unseen, something that cannot be touched or smelled or scientifically validated.  That is hard for us as Americans.    



As we have journeyed on, we have learned a lot about hope.   Hope really IS the evidence of things unseen,  Hope really IS about anticipating a future... even if your medical team does not think you have much of one.  I love my Oncologist who encourages me to plant Apple trees that will take 3 years to bear fruit, and chestnut trees that will take 10-20 years.  When I walk around our backyard, I look at them and take hope. 



When I finished all the treatments for my initial, Stage 2 breast cancer in 2004 and my oncologist (a different person than my current oncologist) told me that I was cured and the cancer was gone, I went right back to my stressed lifestyle and expectations about the future.  I deeply wish I didn't have this stage 4 cancer but I am so grateful now as I am replacing expectations with hope.  I greet each day with love and joy.  I thank God for the relationships I have and the ones I am developing.  I delight in my garden and the sun and the clouds  (still working on delighting in the rain).  I give thanks for Joe, my blessing of a husband.  These are all present joys and have a HOPE of future joys in them as well.

I cant say that the journey from "I expect the future to be such and such" to " I hope the future is such and such" has been very easy.  Lots of tears seemed to be needed to slide me from one to the other.  And I am still not there... but I am a lot closer.  And that gives me hope!

I pray that God, who gives hope, will bless you with complete happiness and peace because of your faith. And may the power of the Holy Spirit fill you with hope. [Romans 15:13]

Again, thank you for all your support and love,



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

CHEMO: How It Feels -by Heidi

First, Joe and I, through our experiences, have decided to call all the therapies that we have received "chemo".  It is just too hard to explain that "this is a targeted hormonal therapy, that is a monoclonal therapy, this is a viral therapy...."  People understand "chemo" and you can just say, "this one will make me lose my hair", or "this one doesn't usually make me throw up" and everyone gets it. There are so many ways that cancer is treated now-a-days and professionals would probably roll their eyes but we find it is so much easier to say that we are getting chemo and leave it at that.

Ironically the therapy that was the targeted and first-line drug for me was a hormone depresser.  And boy, was I depressed.  Funny all the things that I did not know that estrogen facilitated in my body.  I developed severe arthritis-like symptoms in my hands especially which really impacted my daily life.  I couldn't open a jar, had no hand strength, bad nerve pain and numbness.   My back and hips ached all the time.  I was pretty moody (but it is hard to separate out medicine effects from the fact that I had just received a horrible diagnosis with a really bad life expectancy).  When it failed to keep the cancer in check and I had to go to stronger chemo, I was scared stiff.  But in terms of side effects, it has been much better.  The only downside is that I have to come to the cancer center each week instead of once a month. 

I am fortunate because my side effects have not been totally debilitating.  When I first started treatment, I was NOT going to let side effects stop them from giving me these drugs that gave me a chance for a long life.  I was determined.  But now I more fully understand that side effects can  be so debilitating, so impact your quality of life, that it is a balancing act:  quality vs. quantity.  I dont know all the answers but I sure have learned to not be so judgemental or assume that I know the answers.

One thing that makes the chemo easier is how friendly and kind the people at the chemo center are.  You share your feelings, hopes and sadness with the staff and those you meet in the lounge and leave encouraged.  I am so fortunate that Joe is willing to come with me each time and we try to do something fun each week.  I am also so very grateful to God that this chemo is holding my cancer in check (for almost two years now).

Thanks again for all your support and feel free to communicate with us. We love hearing from you.

Heidi

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