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