Medical Care Costs

This is not really a point of view about the new health care law, or attempts to roll it back. What I can share is how crazy our system is from the point of view about how insurance does or doesn't work. And then the more fundamental point which is about the overall rise in healthcare costs.

Drama Fatigue

There is something enormously fascinating about the human (well, let's say male) brain. Given the enormous stress we've been under the last several days since the latest news, it's no wonder mine's a bit addled. The typical male response to stress is fight or flight. Clearly a cabana boy cannot do either of those things in this kind of situation.

Reflections, Infections and Inflections

Cancer isn't an infection the way a virus is, although it feels the same. For so many ills and diseases the protocol for cure is well known, even though it can be a hard road. I remain impressed by the women we see each day at the cancer center, getting their blood draws, doctor visits, and then chemotherapy or radiation treatments. Their spirit and determination is admirable. I suspect part of what keeps them going is that they have a pretty good idea that the probability of success is quite high. Yes, they may have to live for 5 years not knowing if the cancer will reoccur. But given the treatments and the continuing medications (Tamoxifen) if you were in Vegas you'd bet on their success at becoming disease free.

Cabana Boy on Double Duty

I wasn't sure when I started this what I'd write about. I did know that I didn't intend it to be a blow by blow account or daily version of the journey. I guess I hoped it would be more reflective. But this morning, when the snow is fresh on the ground and we are just off our most recent scan news, it seems somewhat appropriate to break pattern and give a "live" update. If you want that, read on .

Results Days

This is not so much about today's results (that will likely be tomorrow's post) but about results days generally. There is definitely a heightened tension. Part of it is just the sheer frustration of not knowing how much the disease has progressed. Another part is starting to think about options, what do we do next if it continues to progress, and how to tell loved ones. Then you also start thinking about what else you could have done. Are you seeing the right oncologist (yes), is it time to go to a specialist center for a consultation, are we eating the right things and taking the right supplements.

Pre-scan meal, oh so not tasty

Scan Day, Again

When you have a chronic disease such as melanoma, scans become part of your life. Hopefully at some point they become less frequent than our monthly ones at the present. Most patients end up getting them quarterly, and then managing aspects of the disease (i.e., tumor removal). The ultimate goal of course is to become disease free, but for melanoma patients currently that is not realistic, you simply want to be NED (no evidence of disease).

A Funny Example of the Difference in Gender

We had a funny exchange a while back illustrative of the difference between men and women. We had received some not so good news, and were in the days following that. Clearly emotions were running high, between concerned and forward looking to possible treatment options. But there are times when you are not researching or talking but simply stewing in your own juices trying to make sense of it all (and of course it doesn't make any sense...). After a few days, we were sitting in our cozy little spot, and she asked me a question.

Yervoy

Yervoy is the new trade name for Ipilimumab, the drug Meagan has been on for her melanoma. She's finished with her course of treatment (it was 4 infusions of about 90 minutes each time, over a 9 week period). She got a scan at the start, one at the 12 week mark (tumors grew, bad sign) and has her final 16 week scan this coming week.

Road Trip Lessons

A very nice two day ride back with Casey from Boulder, CO. Thus the absence of posts. We made excellent time thanks to good weather. I did learn the the Best "Western Plus" in Boulder meant, "plus noise". Not what I was expecting. The eastern part of Wyoming is pretty bleak country. I had not realized how industrialized Billing, MT was - it appears to be the coal capital of Montana, where coal=electricity. Of course, we had plenty of time to talk, about this change for him and what he's thinking. The crisis with Megan is obviously the trigger event, but he's also using it as a real opportunity to think through his life and what he wants to be, do, and how he can have an impact. He also doesn't want to have any regrets, and being away from Meagan during her treatment was too difficult. I'm so impressed by his new gravitas and thoughtfulness, but one comment stuck out in my mind particularly.

On the Road

One of the gifts of being a cancer cabana boy is having the luxury of time to attend to important matters. Having left the security of paid employment (for the insecurity of sole proprietorship and developing four different lines of business), I have also picked up the flexibility of time. Time to take Meagan to oncologist visits and scans. Time to do research and engage in talks and discussions about the disease and the options moving forward.

A Shocking Revelation

Meagan and I want to have a threesome with NED.

In Honor of Valentines Day

No, it's not weird to have a wife with cancer on Valentines Day. We ignore the tumors. Having the cancer doesn't diminish in any way the love I feel for her. In many many respects it deepens and strengthens our love. I'm certainly grateful that from an outward perspective this disease has been kind so far, and her capacities are at an even greater level than before the diagnosis - in fact she looks and acts in the pink of health thanks to her awesome diet and exercise.

It Takes a Village

Once you get settled in the cancer routine (not that there is such a thing, it's just that you become a little inured to the cycle of ups and downs and surprises and twists), there is a little time to breathe and make sure you are doing all the right things to become disease free. We simply could not have gotten to where we are without the incredible support network we have.

Training for a Marathon

The Cancer Marathon.  It's not a running race. It's the race to have Meagan become disease free. Initially (after the true diagnosis of Stage 4 melanoma) it felt like a 100 yard dash. There was urgency - to understand, to cope, to make plans, to change directions, and to communicate and support. So every day was a sprint, and the training was to just flat out run as hard as I could. But in doing this, fatigue sets in - emotional, mental and physical. Sleep was hard to come by as I worried and would get up early to do research. But you persevere because you want to prevail. Then, after the whirlpool has sucked you down and you are gasping for air, you realize that it's not going to be a sprint, that it's going to be a long haul. This realization comes about after doctor consultations, evidence of speed of disease progression, and seeing the potential treatments stretching out in front of you (if this one doesn't work, you try another, if that doesn't work, you try another, etc.). So you have to live in the whirlpool, probably for a very long time. So what do you do?