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