Attack of the Whinies January 25, 2015

Friends and Family,

I’ve come down with a new disease, and it’s been pretty hard to get beyond it for the past couple of months.  It’s called the Whinies.

The symptoms are bad. Minor pains are amplified, and major pains result in a lot of speaking in a foreign tongue. In fact, other people sometimes say “excuse my French”after using this tongue.

Yes, I’ve been cursing under my breath and building up a head of steam for a couple of months . What does it have to do with cancer? Nothing. Or, nothing directly. I'll find out when I see my oncologist on Tuesday.

The source of the Whinies is back pain that I’ve had for the past two months. Lung surgery? Sure there was pain, but I never had the Whinies. Chemo? I felt crappy, but I was on a mission to beat cancer, so I wasn’t suffering.  Back pain? There is no meaning in that pain, and I couldn’t adjust my attitude much, so I was suffering. I didn’t even know WHY I was hurting, which was another source of my (many) complaints.

Skip this next paragraph if you feel the Whinies could be contagious.

I told my San Diego oncologist about the pain. He referred me to my Portland oncologist to get an MRI. SHE couldn’t touch it because it was unrelated to cancer, so she sent me to my primary care physician (PCP). My PCP told me to take oral steroids and come back in two weeks. I did, and they worked, for exactly the six days that I was taking them. His next solution: Lather, rinse, repeat. Protesting that this plan was going to fail didn’t get me anywhere. So, I felt better for six days, and came back in two weeks.  Next, he convinced me to try something that has been effective for “many people”with back pain, gabapentin. I was ready to try it until I got home and read about the side effects. THAT is when I hit my limit. I called his nurse and said I refused to be drugged into semi-consciousness. Carly Simon was right when she sang, “I haven’t got time for the pain.”

Life is too short to spend my time trying to keep my eyelids up, especially when I don’t know how short life will be. I respectfully (or assertively) requested an MRI.

I got the MRI, which showed that I have a few bulges in my discs. No big deal–so does the rest of my body. However, I also have tears in a couple of discs. HOW DID I GET TEARS IN MY DISCS? Even more puzzling, how did I get tears in my discs TWO YEARS IN A ROW, at the same time of year? Last year I could only walk 1-2 blocks due to the pain, and was occasionally using a wheelchair. I was in physical therapy for six months, and kept doing the exercises all year, and still it happened again. Are my discs held together with rice paper? Could they be super-glued back together, or rubberized, or replaced with something sturdier, like Junior Mints?

I will find out this week, when I go in to meet with Dr. Payne. That may not be his real name, but I’ll wait to learn what it really is until I see if he can do something useful, like giving me a cortisone injection, or replacing my spine with a bungee cord.

I’ve had to give myself a time out, put a bar of soap in my mouth, and use the skills I have learned with cancer. What can I do differently to get better results?

Sharing makes a difference. Truly, sharing this journey with you has made every part of it so much easier to cope. Next, a good dose of humor may not keep the doctors away, but it makes me like them more. And the last key to coping is perspective. When I step back and look at the big picture, if I'm complaining about back pain, it means that cancer is not my #1 problem at the moment. That makes ANY day a pretty good day. It makes it easier to remember the gratitude that normally fills just about every day. At least it does when I don’t have the Whinies.

A couple of days ago I was talking to Genevieve on the phone. She was in San Diego. I told her that the weather in Portland was a beautiful 50 degrees and sunny. She told me that the weather in San Diego was a mediocre mid-70’s and partially cloudy. I’m not telling you this to pick on Genevieve. When I’m in San Diego, this is exactly how I look at it. Perspective is everything, isn’t it? I’ve started to feel sorry for those poor San Diegans that never experience the joy of a sunny day, because they have come to expect it. Anything less is a letdown.

I hope you have a relatively spectacular day.

Love,

Dann

Never a Dull Moment December 3, 2014

Friends and Family,

Genevieve and I are back in San Diego again, for all of the pokes and prods, scans and samples that are part of this latest three-day trip. We were tense waiting to hear the results from my CT scan, which was completed yesterday. It's the first one since I started taking AZD9291. By noon today we were in full "scanxiety" mode, still waiting for results five hours after we got to the hospital. 

We also had a new concern. Over the past five days I have had pain in my lower back that was shooting down my right leg. I had the same pain in the same place exactly one year ago. It got bad enough that I was in a wheelchair on a few occasions (airports, OMSI with the grandkids, and other events that required a lot of standing) over the course of a few months. Dr. Patel made sure the scan covered that area so he could find out if the cancer spreading.

One of the staff decided that we shouldn't have to wait any longer, so in between EKG's she gave us the Cliff's Notes version of the reports. It was decidedly mixed. The report for my lungs showed some shrinkage, but the one for my hips indicated that there were a few new lesions. 

This wasn't what we were hoping to hear. What did it mean that it was growing in one place and shrinking in another? My mind was racing, thinking about getting my affairs in order, and treatment alternatives - all the familiar ruminations. Genevieve was true to her own way of coping under stress, as she withdrew into a blank stare.

We had seen Dr. Patel before my scan yesterday, so he planned to release the results today, but not to see us again. After the report we had just seen, that was not going to work. I pushed to have the doctor see us.  

I'm glad I did. When he popped in a couple hours later, he was all smiles. He pronounced the results a total success. 

He said that what appeared to be new cancer spots on my bones was actually the cancer dying in those places, which made them easier to see on the scan. His complete confidence and experience with similar results was enough to convince us!

He also elaborated on the lung scan. Many of the countless baby tumors had disappeared, and many of the others were smaller. The biggest one shrunk from 24mm down to 7mm. Overall, he said the cancer had reduced in my lungs by 60-70%. YEAHHHHHH!!!!!!!!!!!!!

I have a new favorite oxymoron now: "Massive Shrinkage!" 

Now, about the lower back problem. It is not cancer. He thinks it may be a slipped disc or similar, something that should be treatable with a cortisone injection or similar. He said an MRI should define it more clearly. That sounds much better than either cancer, or the "torn disc" that it was (mis?)diagnosed as last year. 

Let's see... Shrinking cancer and a back problem that may be easily treated? 

I love the holiday season. Today was a little bit Christmas and a lot of Thanksgiving. There is a lot to be grateful for.

Happy Holidays!

Love,

Dann

What's it take to get an MRI around here? October 26, 2014

Friends and Family,

Here's how a recent conversation went with my oncologist:

Me:   "My right elbow itches, and I get a twitch in my left eye when I eat squash."
Doc:  "Could be the cancer. We should get you an MRI."

Those weren't the exact words, but pretty close. I had some pain radiating down my right arm for two days, so I dutifully reported it, just like they drilled into us clinical study participants. 

I thought it might just be an irritated nerve, but when you're an oncologist everything looks like cancer. Since I have cancer in a couple of spots in my spine, he was worried it had spread to my neck. Regardless of whether I agree every time, it's good to know that he has my back.

This is when I got a lesson in the costs of running a clinical trial. Before he ordered the MRI he had to email the drug company to find out if it was something they would pay for, or whether it would my insurance would have the honor. Routine care goes under my insurance. Anything not routine, like my biopsy, EKG's, lab work, etc. gets paid for by the drug company. 

You thought I was going to San Diego all these trips for treatment? Nope. All I do for treatment is take a pill every day. The trips to San Diego are to get scanned, sampled, and studied.

Every CT, MRI, and trip to the infusion room for EKG's costs thousands. If you've ever been in a hospital you know that the bill is always, always, always higher than you think it could possibly be. 

Multiply these thousands by a couple of dozen or more events over the course of a year or two for the trial, and the math gets pretty staggering. Then multiply that by 440 participants. That's without even considering the cost of all the brains and research it takes to develop the drug. 

It all adds up to the reason why they charged $200 per pill for Tarceva, and why they'll probably charge something similar when AZD9291 grows up and gets a real name. 

I have often thought about the massive bill my insurance company is paying for my care. I have often felt guilty about these massive bills piling up over eight years, and I'm still running up the tab. I am one of the reasons, I thought, why your insurance premiums are so high. 

Am I worth spending that kind of other people's money - your money - to keep me alive? What is the value of a single human life, when the cost is so extraordinarily high? That has been a heavy weight to carry. Not enough to overcome my survival instincts, but all the same it has weighed on me.  

However. 

After eight years I've had time to think more about this. This is how it looks to me: 

The drug company spends a zillion to develop a drug. They pass this on to my insurance company, and make all their money back, plus another zillion for their trouble. 

They also sell it in other countries, sometimes for full price, but it's really based more on ability to pay. It can be sold for a fraction of the price, although they may wait until it has gone generic before they sell it at the discount rack price. 

Yes, your insurance dollars are paying not only for my care, but for the cost of developing the drugs that will be used around the world. You are also paying for future care, since the patent will run out in 20 years, and then they will be selling these pills for a few bucks. I'm OK with this system, because this country can afford it more than a lot of other places in the world. 

I don't know how you feel about it, but all this has eased my conscience immensely.

Back to my doctor and me. While I waited to hear back from him, I iced my neck and stayed away from the gym, so I wouldn't irritate it further. A day later he was still waiting to hear back from the drug company. I told him that the pain was gone, so he agreed to cancel the MRI request.

So what's the answer to the question, what's it take to get an MRI around here?" It's simple. If your baseline is cancer, anything more than a bad case of hiccups will get you another scan. But this time anyway, that won't be necessary. 

That's one less pain in the neck!

Love,

Dann