Grieving Heidi's Death - Joe

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




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




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

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

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



Love & Blessings,
Joe

Celebration! -by Joe

Awaiting tumor marker results and Oncology appointment

After 3 succesive chemotherapy failures in the past 6 months, Heidi's new liver tumors were growing as well as her bone and lung cancer progressing. Terrifying.  So 3 weeks ago her Oncologist resorted to the very toxic chemo called Taxotere.  Unlike Heidi's past chemotherapies, Taxotere is given once every 3 weeks instead of every week.

Great News!!

This Monday, 3 weeks after that first dose, Heidi's tumor markers were drawn and an hour or so later we met with her Oncologist.  The result? The tumor marker showed Taxotere was working, even after one dose!!  And her liver tests were moving back towards normal!


Because of the high toxicity of this chemo, Monday's dose was stopped when Heidi immediately developed a serious reaction to Taxotere as soon as the dose was started.  So they tried again Tuesday, going very slowly, adding other meds to reduce her body's negative reaction.  It worked and she got her complete second dose of Taxotere!

At the same time they were starting the second dose of Taxotere on Tuesday, I was seeing my own Oncologist for a followup after my cancer surgery on March 12.  Everything looked great he said, including my tumor marker(PSA)!  So I rejoined Heidi for her hours spent slowly receiving the Taxotere.

Celebration meal together with Mary at the SCCA Guest House

Heidi's dear friend Mary was also with Heidi in the chemotherapy room both days, giving wonderful support and encouragement.  Thank you Mary!  We celebrated with a meal together with Mary.

Back home now, we are both exhausted but so very thankful to God, to the staff at Seattle Cancer Care Alliance and so many friends & family praying for us, sending positive thoughts our way.

So thank you!

- Joe

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



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

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

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

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

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!