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  The downside is that by the time a book or article is published it might be out of date in the world of cancer treatment!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