Red Band Society Episode 3: A Sarcoma Patient's Perspective

Red Band Society Episode 3 - Liar, Liar Pants on Fire

Charlie: "One thing I've noticed about being in a hospital -- People lie a lot, they lie to make you feel better, they lie to make themselves better…Lies are just one way of dealing."

I agree with Charlie's statement somewhat.  What I've seen more often is that the complete truth is not laid out, whether it is intentional or not.

For example, I've had one doctor tell me a procedure is not possible, but another doctor says it is.  Often it's the limitation of one doctor or hospital that reduces the possibilities.  We've had to go for a second, third or even fourth opinion to get the whole truth.

Charlie: "Then there are the lies that you tell yourself, like I'm not that sick"

I felt that way after I finished chemotherapy.  The side effects of chemotherapy are cumulative, and I started getting some neuropathy (nerve damage).  I felt some weakness in my legs when I was walking in the house, but didn't think much of it.  I was done with chemotherapy, after all!  Then I took laundry out to the backyard and my legs complete gave way when I was going down a small step.  I scraped my knee quite badly.

It's hard when the treatments make you very sick and weak, putting you in a state that you've never been in.  We want to feel normal and useful, but resting and accepting the drastic effects of treatment is the wiser thing to do.

Dr. McAndrew shows Jordi his scan, which reveals the diagnosis of Ewing's sarcoma instead of osteosarcoma.  With this change in diagnosis, Jordi needs chemotherapy instead of surgery now.  Charlie comments, "You're looking at the one thing in the hospital that never lies -- a PET scan".

Oh, I laughed and clapped when I heard that because it is so true!  Scan time always causes anxiety.  There's tension between wanting to know what exactly is going on inside and not wanting there to be bad news.  Scans really do not lie.  However, radiologists can miss out on detecting tumors from the scan.

I've had a tumor clearly appear on the scans, but the radiologist did not note it in the report.  Often oncologists just read the radiologist's written report on the scan, and don't look at the actual scan.  That's how tumors can be completely missed.  It's quite scary to think about how many patients could have had better outcomes if the scans had been carefully read and reported.

With that experience, we had to start looking at the actual images of my scans.  We learned to correlate the scan images with the radiologist's report.  We scrolled through the scan images, scouring it for bright tumor spots.  Then we compared it with past scans to look for any changes.  Any suspicious spots were measured and tracked through time.

Jordi's mom reappears in his life, thinking he has a minor health issue.  Jordi confronts his mom about the seriousness of his cancer -- he's not just sick, he could die.

People react in all sorts of ways when you have a life-threatening condition.  One of these ways is to minimize the seriousness of it.  This response may be helpful to patients who don't want to see their illness as serious.

But, for me and Jordi, we're both fully aware of the possibility of death, and fighting very hard.  In this case, I appreciate it when people realize that the things I say and do are in the context that my days are numbered.

Dr. McAndrew tries to convince Jordi to allow his mother to come alongside of him, "Research, as well as my personal experience, shows that patients have a much better chance of survival when they have someone close by their side".

I know that without Cancerhusband by my side, I would not be alive now.  His steadfast determination to restore me to health, and his constant companionship has given me so much encouragement and strength to go through even the darkest times.

Watch Red Band Society on Fox Wed 8/9C, or online at Red Band Society Episode 3 - Liar, Liar Pants on Fire.