Heart Transplant Pumpkin for Halloween at ISIS

The folks at ISIS (Institute for Simulation and Interprofessional Studies) did a fantastic job again this year in the UW Med Center pumpkin contest. They used our beating heart simulator to construct a truly awesome Halloween creation. Check out the video!

The high cost and strange economics of health care

I haven’t posted on this blog in a few weeks, which is actually a good thing. It means that I have returned to work and have been busy enough that I haven’t had time to update my blog.

The good news – I have completed chemotherapy and my most recent scan shows no evidence of residual cancer. In other words I am cancer free. I don’t need any more treatment or testing for another 6 months. After that I get a CT scan and lab work every six months, but can otherwise expect a normal life.

As far as my recovery, I am doing well. I am fully back to normal with respect to my daily activities and my ability to work, including operating. I’ve even started back on my normal hobby of home improvement – witness the new railing I built for our back stairs.

I’m still not quite back to my normal level of physical fitness, mostly due to the fact that I wasn’t able to exercise for 4 months and I gained 10 lbs due to the steroids I was on to help manage the side effects of the chemo. I’ve started working with a personal trainer, and I expect to get back to normal fitness in a month or so. I’ve even started to grow some hair, although it is still mostly stubble.

Now that I am done with any physicians visits for the next 6 months, I sat down tonight to figure out my total medical bills since my cancer diagnosis. As best I can figure, my total charges add up to $110,931.16 including physician fees, pharmacy, and hospital charges. Of this, my insurance provider (Regence) negotiated payments of 63,510.06 and I had to pay about $2000 out of pocket. I was also fortunate in that the University of Washington paid for a full 3 months of sick leave at full pay, meaning I didn’t miss a paycheck through the whole process and I didn’t have to go on disability.

If I had no insurance I would be liable for the entire $110k. The typical patient with testicular cancer is a male in his early 20s (I am significantly older than the average patient). This is the age when people feel invulnerable, have little money, and often are still finding their way in the job market. In other words, exactly the kind of person who wouldn’t have health insurance. Even for those with insurance, the cost of co-pays and deductibles can be crippling. I wasn’t able to work during chemo. If it weren’t for a generous sick leave policy, we would have incurred crippling debt with 3 months of no pay. It’s no wonder that health crises are a leading cause of financial distress and bankruptcy, even among the insured.

All this to say that our current health system is broken. I was fortunate to have a good job, good insurance, and an excellent sick leave policy. Most of my patients don’t have that luxury, and I have seen so many people affected by this that I get angry at our nation’s health care system. In the US we pay more for health care than any other nation, while providing care to only a subset of our population, and while getting worse health outcomes for our investment. The Affordable Health Care act is a start, but nowhere near enough. We need true universal coverage and we need to align our system of payments to incentivize quality rather than quantity of care. If we can’t get this done, we are truly headed towards a national crisis as costs continue to spiral.

Enough of the soapbox for tonight. I’ll continue to update this blog periodically, although I won’t be posting as much about my own health. Instead, I’ll move back to my original vision for this blog, which is to use it as a forum to post about surgery, technology, education, and innovation in health care.

Last week of chemo

It’s the second day of my last week of chemo. Every chemo regimen is different – mine makes for particularly long days. Because the chemo drugs are toxic to the kidneys I get several hours of hydration before and after the chemo itself. That means my typical day is 8 hours of infusion for 5 days in a row. Gets a bit boring, especially as the week goes on and I lose the ability to focus well enough to read for more than about 5 minutes in a row.

For now I’m doing as well or better than can be expected. So far no major side effects other than the nausea and fatigue. The biggest issue right now is actually the anemia caused by bone marrow suppression. My hematocrit (a measure of red blood cell volume) is down to 27 from a normal of 40-45. I’m ok as long as I am not very active but my heart races every time I do something as simple as climb a flight of stairs. I went to a level 1 yoga class this weekend and frequently had to rest in child’s pose due not to fatigue, but due to my heart racing too fast. I suspect the anemia will be the most limiting factor when it comes to the time course of my recovery. I’ve also had some minor (and expected) side effects including some tinnitus (ringing of the ears) and mild neuropathy (numbness and tingling of the feet) that should improve over time.

I probably won’t feel up to posting again for another week or so, but I’ll try to update my status once I get through the worst of this cycle. I’m sure this cycle will go quickly, just because I can look forward to a full recovery.

On a special note, I have to give a lot of credit to the nursing staff here on 8SE at the University of Washington. They have been fantastic – I couldn’t ask for a more caring and capable crew. It takes a special breed of person to work in an oncology unit – I know I couldn’t do it myself.

 

Entering the home stretch.

Just a quick update: I’ve now made it through three of four rounds of my chemo. While the fatigue has been cumulative, I’ve been fortunate to avoid most of the more serious side effects. This is one of my good weeks between rounds, and I’ve been feeling strong.  It certainly hasn’t hurt that the weather this week has been spectacular – I spent almost 4 hours yesterday on the patio enjoying the sun and trying to catch up on my overflowing email inbox.

I’m now turning my attention to the future. I start my last round of chemo on Monday. If it is like the previous rounds I’ll have about a week afterwards where I am too beat down to do much, and then a week were I can start feeling well. Right now I’m planning on starting back to work and seeing patients  the week of June 11. It will have been 3 months out of the operating room, so I’m planning on spending 2 weeks assisting my partners in the OR just to get back up to speed and build my stamina back up before I start operating in earnest.

I’m still not sure how long it will take to get all the way back to normal, but my oncologist suggests about a month. I suspect this is about right – if only because my exercise tolerance is about zero and I’m significantly anemic, which will take a while to correct. The steroids I’ve been on haven’t helped either – I feel puffy and my weight has redistributed from muscle to fat.

There is some interesting research now on exercise and cancer – pretty good evidence that exercise helps improve survival. The NY Times had a great article on this the other day. I’ve been doing my yoga through the last few months, although at very low intensity. A big thanks to Erin Taylor at Jasyoga – even when I haven’t been able to make her class I’ve been using her recovery techniques to help. After chemo I will ramp up the intensity as I can and get back to 2-3x/week.

I’m also looking forward to playing soccer again – it’s been tough to watch my daughters play and not want to run around the pitch myself. After missing several Sounders home games at least I was able to attend Saturday’s game against Real Salt Lake. I stopped by my office today just to clear my inbox and found something special waiting for me – a signed Sounders jersey from my friend Scott (a former Sounder himself). That definitely made my day.

Finally, a big thank you to my friends and family. Your thoughts have been a real comfort as I’ve been going through this.

I stopped by my office today and found this waiting for me. Thanks Scott!

Halfway Point: Feeling better and looking forward to finishing chemo

I’ve now reached the halfway point in chemotherapy. The second round went better than the first, but the recovery period has been somewhat tougher. I apologize for the delay in updating the blog – I know that a lot of folks have been wondering how I have been doing.

First the good:

The second round of chemo was marked by much less nausea and fewer side effects than the first round. I attribute this in part due to using the new anti-nausea medication Emend (Aprepitant). This was denied by my insurance plan the first go around, and again the second. I ended up paying out of pocket to the tune of about $250, but it was well worth it. Because I had less nausea, I was able to use less of the other 8 medications prescribed for me. Therefore I was also able to avoid a lot of the side effects of those meds. The other thing I did better was knowing what to take and when. It helps a lot to anticipate and prevent, rather than react to symptoms.

On the down side, the fatigue seemed to be somewhat cumulative. I entered the second round of chemo at about 80% strength. This made the recovery from this round take longer, and I am still not back to where I was between rounds 1 and 2. It’s only been the last few days that I’ve been up for much, but I’m now to the point where I actually went to work for about 5 hours today.

The great thing is that I’ve had incredible support from my family, friends, and colleagues. I can’t say enough how much I appreciate all of the caring messages, flowers, hats, books, etc. Being halfway through, I’m now able to look forward to finishing chemo and moving on to full recovery. I start my next round on Monday – I’ll try to post more frequently with some short updates.

With the girls at the Japanese Garden in the arboretum

Chemo day #10: The Buzzcut Edition

So it’s been a week and a half of chemo, and I’m tolerating. The first few days were pretty easy actually – a bit of nausea but they gave me steroids to counter the side effects so I had plenty of energy. The end of the week, however, was miserable and the weekend even worse. The nausea and bloating combined to make me feel subhuman, and the side effects of the nausea medication were mental fogging and more bloating. You know its bad when I can’t even focus enough on the television to watch soccer.

One thing about medicine is that we love our 0-10 scales. “Rate how much pain you are in from zero to ten.” “How much nausea are you having on a 0-10 scale?” On the 0-10 scale of humanity I was feeling about a 2 on Sunday. Monday turned a corner, and today I’m up to about a 6/7. Not bad, but not great. I’m hopeful that by next week I’ll even feel up to working for a week before the next cycle of chemotherapy starts.

I went today to get my buzzcut. I apparently have a 100% chance of baldness in my future, and I can actually feel the hair follicles starting to tug so I don’t think it is long now. I had been planning an actual head shave – hot towels, straight razor, and all. The chemo nurses gave me some great advice, however. Apparently the head shave is too itchy as the cut ends of the hair end up below the skin surface. The cut ends aren’t pushed out by new hair, since none grows for a few months, so you end up with trouble. I haven’t shaved in a week and my beard hasn’t grown, so I know my hair is already in arrest cycle. Therefore – the buzz cut is preferred.

A word on chemo nurses – they are your best friends in all of this. I’ve always appreciated the work that our nurses do at the UWMC, but now I can really see all of the caring that they put into their work each and every day. It takes a special person to be a nurse, and an even more special one to work on the chemo unit. I really can’t say enough good things about them.

Now that the 1st cycle of chemo is almost done, I have 3 more to go. I know how to deal with the worst of the side effects and hopefully I will breeze through and get back to real life by early summer. Not to be a shill for the Disney company, but I think I may have to take the family to Disneyland in June to celebrate.

Chemo day 1

I’m 6 hours into the first day of chemo, with 2 hours to go. Since I didn’t start until 1, I’ll be here until 9. Wifi and an iPad certainly make the day go faster.

No nausea yet- I’ve been told that will hit tomorrow and progress over the course of the week. I still have a full head of hair as well, however I’ll start losing it next week. I plan on getting my head shaved first – we live in an old house and I would hate to clog the drains.

The folks here have been amazingly helpful and caring, although things were a bit disorganized at first. Originally they didn’t think they could get me in this week and I would have had to wait until next Monday. Being a doc here does have a few advantages- the team managed to shuffle things around to get me started today, even if a bit late in the day.

I’ve been given a grand total of 6 different anti-nausea prescriptions. One of these doubles as a sleeping pill, so hopefully I can get some sleep tonight. (I couldn’t sleep last night and was up until 3:30 am watching a marathon of Auction Hunters)

As I mentioned previously, the first choice I had to make was between chemo and radiation. The second choice was what type of chemo. For my stage disease you can either get 3 cycles (9 weeks) of bleomycin, etopside, and cisplatin or you can get 4 cycles (12 weeks) of just etopside and cisplatin. It isn’t an insignificant choice, as the bleomycin carries significant risks – namely a small chance of pulmonary fibrosis, risk of later cardiovascular disease, and a reasonably large risk (20+%) of Raynaud’s syndrome.

So how to decide? Unfortunately the literature doesn’t give very good guidance. There are a number of older studies suggesting bleomycin is important. These have led the group at Indiana University to write a number of very strongly worded editorials that treatment for testicular cancer should always include bleomycin.

As a frame of reference, IU is legendary for pioneering treatment for testicular cancer. They treated Lance Armstrong.

On the other hand, the group at Memorial Sloan Kettering has felt that for good risk testicular cancer the risk of bleomycin outweighs the benefits, given that prognosis is excellent no matter how it is treated.

For frame of reference, MSKCC is one of the premier cancer centers in the world, and trained a number of my good friends and colleagues.

There is one head-to-head randomized controlled study between 3BEP and 4EP that was unfortunately underpowered. In other words, they didn’t include enough patients in order to draw meaningful conclusions.

So what to do?

Given that I have low stage, low volume, good prognosis disease, I decided to go with 4 cycles of etopside and cisplatin with no bleomycin. The course of treatment is 3 weeks longer but the risk of permanent side effects is smaller. If my tumor were worse (non-seminoma or stage III) I would have gone with bleomycin.

As an aside, Lance also chose to avoid Bleomycin due to the risk to his lungs. In his case, however, he had very advanced disease. He therefore went for an alternative and even more aggressive regimen.

So now it’s just a matter of getting through the next 12 weeks. If I’m going to be here 8 hours for each treatment I might have to bring in my Xbox 360 in with me and hook it up in the treatment room. Mass Effect 3 is calling for me.