A cancer journey – scan results, reflections and more

It seems a LONG time since we talked about cancer and three whole months since the last scans. Geez, it was nice to have a break. Just so you know … cancer is always the elephant in the room. Sometimes it is the size of a mouse and sometimes a lot larger. When Rick’s ankles started swelling … a lot … conveniently right after our last visit with his oncologist, inside I panicked. We blamed it on a change in medication. Changed it … still large ankles. When we finally ditched the medication … after about six weeks … the ankles returned to normal. Found out he could live just fine without it. The elephant turned back into a mouse.

Then in November, I thought it would be a great idea to walk in the 2017 MD Anderson’s Boot Walk. Rick woulda never made it in 2016. I loved how cancer survivors at the Boot Walk were given a “survivor” bandana. Rick wore it like an arm band. It was surreal walking with so many survivors, caregivers, friends and family that were touched harshly by the evil hand of cancer. I also noticed many walking in memory of those they lost. What a lovely tribute and a great way to raise money to fight cancer.

Final numbers on the 2017 Boot Walk fundraiser … they reached a million dollars. Rick and I walked along with our awesome daughter, Katie, and grandsons, Jacob and Ben. The sign pinned on Jacob’s back read, “I am walking for my Pop-Pop.” And Ben, he slept the entire walk.

So this week Rick had his three-month scans and blood work. Our visit with Dr. Campbell is always an adventure. We chatted about so many things besides blood work and scans. Rick is doing great. Everything is still stable and we head back in May!

Then Dr. Campbell got out his magic marker and started writing across the tissue paper on the exam table. Geez, the last time he did this was to explain how immunotherapy works from a chemistry perspective. I looked at Rick to see if I should be worried.

“I am telling all my patients three things,” Dr. Campbell started.

In a peanut shell, he was frustrated with the state of Medicare. Lots of his cancer patients are on Medicare and having problems with receiving care. Apparently, Medicare has all these rules/laws that date from the 1980’s and it is his … and his colleagues … opinion that changes need to be made. Lots of articles in magazines, newspapers and other social media outlets are not having much of an impact in Washington. It was his thought perhaps there needs to also be a patient-driven mission to help make some important changes to Medicare.

His three points were, as follows:

1. Medicare has to be able to negotiate drug prices. Let’s face it. Cancer drugs are expensive. He also said the United States pays for 80-85% of the world’s drug costs. Other countries negotiate their drug prices and that is why they are so cheap compared to the United States. Something I never knew. Sounded reasonable to me.

2. Medicare patients should have the same access to care as commercial insurance with their co-pay programs. So I am guessing this is not happening. Why not?

3. Cancer patients should have the ability to participate in clinical trials. These important trials are saving so many lives. I’m living with one success story.

I wondered if Rick would have been approved for the immunotherapy trial that saved his life had he not been insured by commercial insurance. Looks like I need to become more educated about how this works. Thoughts anyone?

2 thoughts on “A cancer journey – scan results, reflections and more

  1. Such good news to hear Rick is doing so well! Yes, the insurance /pharmaceutical industries in our country need overhauled. I am no expert, but I have my own experiences, those with Michelle and stories of others that are truly disturbing. I’ve learned to know the patient rights, advocate through the lack of informed choice and the “we can’t do that”. Through necessity I learned about the Joint Commission, LTAC’s and the extreme drive for cost reduction. During Michelle’s last hospital stay I exercised her right to choose a different hospitalist, the doctor assigned by and who works for the hospital, when his bedside manner was not acceptable. No, her doctor did not attend, although also affiliated with Memorial Hermann. She has Medicare/Medicaid and he had no privileges (very likely he chooses not to due to reimbursement rates, but no one will offer to explain why and I did not want to press for an answer). Sadly, I know of too many who have been bounced around from facility to facility after the hospital says they are ready for discharge, but need additional long term care (LTAC). Your rights protect you from early discharge and you need an advocate to handle the bureaucracy. My last comment is about the ACA. As my Cobra was ending I petitioned UnitedHealthcare to permit my yearly cancer follow-up scans to be done 3 mos. early. They immediately approved as a ‘needed’ procedure. Then my company-sponsored coverage ended. No policy within the ACA will get me back into MD Anderson and there are no insurers offering individual or family policies outside of the ACA. Pitiful. So thankful I received a good report last August and am in my 12th year of remission.

  2. This health insurance stuff is a mess! Thank goodness you thought ahead about getting your scans early! The rules and regulations in this industry really make it challenging for people to get the health care they need. We shouldn’t have to be so educated about the process all the time. The consumer should just be treated fairly without them creating all this drama all the time. I don’t understand why it has to be so complicated. Well … yes I do … they just want us to give up and go away.

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