It is amazing that I have already completed the first phase of treatment (radiation and chemo) and am starting the second. The past 6 months have gone past so quickly, it’s hard to recall how it all transpired and all the steps along the way. Just yesterday, I completed the stereotactic (SRS) radiation to the one remaining brain tumor. It took nearly 2 weeks for the radiologist to plan it, but my part was pretty easy. It was a 1 hour ordeal. Not too bad except for the discomfort of having a bald head in a hard plastic mask screwed against a hard table for the duration. I am on steroids again to deal with the inevitable brain bloating but no notable side effects that I’ve noticed, aside from a persistent inability to sleep.
The next steps are the once every 3 week Herceptin and once every 4 week Zometa to deal with the leaching of calcium from the bone caused by the Herceptin. Too bad these can’t be coordinated so I can go in just once a month, but so be it. These are both drugs that have to be injected, in my case, into the port in my chest. It’s not a big deal, but I have to go to a nurse who knows how to work with a port because it needs to be accessed, cleaned out and prepared for the next use properly. I really do think it’s the way of the future for those of us who have to get injected or have blood drawn regularly. It dramatically reduces the need to poke a syringe into my arm where it is harder and harder to hit a vein. However, nurses who are fully trained in port protocol are not as common as you might expect and it’s just not something you can inherently trust someone on. If the port isn’t cleaned out properly and injected with a chemical to keep it clean and open, it can ruin the port (which would require surgery to remove and I don’t know if they could put a new one in, although I assume this is the case). I will also start taking another cancer calming drug orally, Arimidex, which reduces the estrogen in the body and has worked well for those, like me, who found that the traditional Tamoxifen has stopped working. Both the Arimidex and Tamoxifen are taken orally but aren’t quite as aggressive as the intravenous chemo drugs.
I start my one month “Leadership in a Democratic Society” course in Charlottesville, VA this Sunday and am so excited. I am taking an Aspen Institute Course with plenty of prepatory reading including everything from the Declaration of Independence to Milton Friedman, Alexis deTocqueville, Plato, Virginia Woolfe, Rachel Carson, and Adam Smith. It has been wonderful and certainly helps to put democracy in a context and on a continuum (does that sound like my Dad talking? He loved continuum!). It is like being back in US History with Dick Gallagher which I absolutely LOVED. Thank goodness I have the steroids to keep me awake so that I can read all these texts!
One final request… if anyone has suggestions for clearing out a clogged ear let me know! My hearing is decreased 20-80% in one ear. I have been to the ENT 4 times but can’t seem to overcome the stuffed left ear. I’ve tried everything from yawning to hydrogen peroxide, a multitude of ear meds (none of which worked and some which really hurt!), naturopathy, and a neti pot. Nothing has really worked for the long haul. I would really like to see if I can get this resolved before I resort to a hearing aid. Nothing against hearing aids, but the hearing sometimes comes back for a few seconds, so it feels too early to give up. Any thoughts are most welcome. If you’d prefer to e-mail me at email@example.com.
Finally, to celebrate all the effort that people have put forth to support cancer research as well as encourage all the people who are dealing with cancer or supporting those that do, we should have a cancer support T-shirt celebration when I return — maybe in early November or December. Duncan kindly had a bunch of purple shirts made up for the Komen Race for the Cure in May and I have a few left over and I know the others who are collecting donations probably have shirts of their own too. We’ll make a point of celebrating this both physically here in DC as well as virtually via this blog! Feel free to start sending in pictures of you with your T-shirts! More on this in another month. You can send them to firstname.lastname@example.org and we will consolidate and post them!
Also, once I return from training, I hope to devote some considerable energy to arranging a tour to Japan for anyone interested in visiting a few of the temples identified by the monk who brought Esoteric Buddhism from China to Japan in 804 AD, Kobodaishi (Kukai) — see the Wikipedia entry. We plan to spend a week visiting some of the 88 temples on Kobodaishi’s pilgrimage over possibly week to 10 days in southern Japan on the island of Shikoku next summer.
Why a pilgrimage you may ask? This may sound utterly unrelated to cancer. In fact, as I was dealing with the inevitable, “Why me?”, “Why again?”, “How do I deal with this?” questions early in my metastatic diagnosis, my brother, Eric, just cut to the chase and said we should do a pilgrimage in the summer of 2011 to celebrate recovery. It seemed premature at the time, but learning to live in the moment and put all those emotions which push us over the edge in perspective, giving thanks, not to mention the chance to see a new part of Japan — it all just keeps making more sense all the time. I have been to Kobodaishi’s temples and phenomenal mother of all cemeteries, Koya-san, in Wakayama Prefecture and cannot think of a better way to acknowledge this amazing experience in my life — it is a beautiful and deeply moving place with incredible cultural and historic significance. You all have been a big part of that amazing, by the way! Keep an eye out for more to come!
Wishing everyone the best over the coming month!
Lots of XXOO, C