Thank you, and changing course

First off, I want to thank everyone who helped me and held my hand through this whole messy business. I could not have made it through without you.

Second, as you have probably figured, I ended active treatment some time ago now, and have struggled with where to take this. I am not an oncologist by training-but an infectious diseases specialist, and a hospital epidemiologist, in particular. So I am changing course, and refocusing my efforts on other topics.

Top of the list: Ebola.

At long last... Pictures Five and Seven Months After The Last Infusion of TCH

About Five Months After the Last Dose...

And About Seven Months After the Last Dose (Or, almost one year after the first infusion, depending upon how you look at things).

My hair is quite unruly these days- comes from the fact that it is all the same length. I have trouble getting it to stay down, even in very dry Colorado!

Behind the Bills: How Much Does It Really Cost?

Rather long hiatus because I am back at work, and it has been busy juggling work and the kids. But back on the infusion unit today for a (theoretically) quick herceptin infusion. I was inspired to write this posting because the infusion unit was running over an hour behind schedule... causing me to take more time off of work, and costing me both time and money.

The Cost of Cancer and Chemotherapy:

The direct costs of medical disease tend to be (reasonably) transparent- in the case of "catastrophic illness" (which breast cancer is), deductables are higher than for usual care, but predictable.

My almost every measure, I had "good" coverage- and still have paid out over $15,000 towards various deductables and co-pays (partially because, due to my medical condition, my husband and I switched jobs several times, and so every time we got close to the maximum out of pocket deductable, we had to start again from square one).

What insurance did not cover: physical therapy pre-radiation ($1000-- this is still an ongoing debate with the insurance company), most of the cost of genetic testing for BRACA ($500), acupuncture (approximately $90 per week x 18 weeks = $1620), most of the cost of a wig ($1250), and medications ($500).

Which gets me to approximately $19,370 in just pay-outs for medical bills, treatments, and supplies-- a number that does not include the costs of parking, childcare, complimentary therapies (massage, personal training- both of which improve outcomes), lost time from work, and lost wages.

Of these- the biggest single dollar amount is the lost wages. Because of my diagnosis, both my husband and I took interim positions that paid less than 30 percent of our contracted salary so that I could get treated. When we did move to start our new positions, I did not work for approximately three months until all of my treatments were completed. Thus, in total, we made approximately one-fifth we were expecting to make during that that 8-month time period.

Cancer is expensive!

I owe a picture of my hair (which now looks like I was going for short). I dyed it darker so that it appears to be thicker, but that is probably not necessary at this point (it helped a lot just as it was starting to grow back). Hopefully the summer sun will take care of that ;)

Six long weeks, and more on hair

Hair re-growth post-chemotherapy:

Now about 10 weeks (2.5 months) after my last infusion, or almost two months after the end of my last cycle (still getting herceptin for several more months). I hit a big milestone-- I can now put a bow in my hair!

Radiation Side Effects

Yesterday, after six and a half groundhog day-esque weeks, I put radiation behind me. All in all, radiation was a good deal easier than chemotherapy.  I can tell that my body is recovering because my exercise tolerance is way up while my need for sleep is way down.

Locally, my skin held up pretty well. I had a burn for about one week in my axilla (this has now resolved-- the axilla only got 23 doses whereas the breast got 25, plus a 5-treatment boost to the lumpectomy site, for a total of 30). I have some skin breakdown around the surgical incision line, primarily because I have a skin fold there, and radiation gets amplified in folds. My cording (also known as axillary web syndrome) flared during the nodal radiation, but has improved significantly with physical therapy. All in all, not too bad.

Radiation Creams

Throughout the treatment I moisturized the area at least twice every day with one of four creams: aquaphor, California Baby calendula cream, Jean's cream, and MyGirls cream. Early on (and overall), I found that MyGirls cream was by far the best (I used it almost exclusively for the first five weeks or so). The aquaphor and the California baby were useful once I started to get some skin breakdown and a burn to mix with lidocaine gel for local relief (MyGirls cream was really too light for this purpose). I did not find the Jean's cream to be particularly good for anything, and so abandoned its use pretty early on.

Hair, six weeks (or so) post-TCH

It is growing in... Due to the color, it is sort of hard to tell, but I now have full coverage, and I almost look like I might just have decided to join the military (think GI Jane).

December 25, 2013