Wednesday, May 23, 2007

The Sound You Heard


...was that of the other shoe dropping.

The tumor was small, 6mm, but large enough to push us to Stage IV non-small cell lung cancer and boot us out of the experimental protocol. Stage I is treated/cured with surgery; Stages II and III are treated/cured with concurrent chemotherapy and radiation. Stage IV is treated/managed with chemotherapy. Dr C. says now we consider it a chronic illness that we'll need to treat from time to time.

In our case, the recommended drugs are Taxol and Carboplatin. Injections last five hours and are administered every three weeks (one cycle). CT scans are done every two cycles -- a total of four to six cycles. Thirty percent chance that it will shrink the presenting tumor. The horrific side effects should be immediate. Beyond that? I've counted my blessings daily for years and I plan to continue doing that.

On other fronts (and backs), the bubblewrap sensation is called crepitus. Seems lots of medical folk know about it, but no one even mentioned it to us. *sighs* Dr. C ordered an x-ray to take a look and said the fact that it hadn't gone away yet probably meant it was leaking little. That, coupled with the incisions needing more time to heal puts our chemo start date at 5/30 at the earliest.

dd has been the most effective in remedying the crepitus. The two massage techniques coupled with the warm compresses has decreased my neck and chest swelling considerably. Relieving that pressure has also decreased the pain caused by the incisions being stretched over the swelling. I've another massage scheduled tomorrow so I think we'll have that part of my recovery a bit further along the road.

Today I began the process of applying for SSDI. They'll call me next Friday at 9am and do the interview/paperwork over the phone; related paperwork will be put in the snailmail. Thanks, Michael, for pointing me in the right direction, it was easier than you said it would be. *grins*

I also made the final arrangements for Uncle Shorty's monument to be installed. The plaque from the Army arrived on Monday and was picked up this afternoon to be mounted and placed. Hopefully in a couple weeks; this _is_ Memorial Day Weekend. I'm hoping to have the rest of Dad's and Mom's affairs resolved before we start chemotherapy.

Three good cases were made today reinforcing my notion that caring for the caregivers and the non-cancer world _is_ my/our responsibility. First, Leroy Siever's NPR blog, http://www.npr.org/blogs/mycancer/ had it as a topic. I read it right after a discussion in oncology where I was reminded that our baldness -- our diagnosis -- _does_ make people uncomfortable, does make people say stupid things, does make _me_ feel those same things as _I_ pass patients supporting IV stands in the hospital halls or as I sit among baldfolk in waiting rooms... The third case is personal: I ask Kevin daily what he's done for himself that day...

Then there are the myriad of conversations about the rewards of being a good patient...not dissimilar to the rewards of being a good student, a good daughter, or a good partner, or a good anything. Taking care of those others is really taking care of oneself...

I had an appointment last Monday to have my hair shaved and sent to Locks of Love. Because of the new diagnosis, we canceled until we had another plan.

It had been my intention to decorate my crown with henna tattoos and to wear hats or scarves only to protect my head from the sun and snow. Now I'm reconsidering that, along with my complaint that the phrase "How Are You" should not have a question mark as the final punctuation. While I'll not use that phrase as a greeting, I'm compiling a list of responses that won't offend any of us. For the record, however, my complaint about that predates our diagnosis by decades.

I've appreciated the 'Alone Time and Space' today. I'm reconsidering a lot of things...

5 comments:

Anonymous said...

"i need a miracle every day" --jerry garcia

Mom had stage IV disease too, and though it was not lung cancer, it was in her lung. This is the part where i like to start reading about all the implausible, yet clearly happening, "miracles" and how they came to be. i especially like the less mystical, more well-documented ones, though i have been known to love a good story too *blink*.

Also, i might be wrong, but i think the Dr. is, about crepitus. Which is the crackling we hear in our neck and shoulders after sleeping in the car too long, not dancing enough, etc...little calcium deposits in our muscles and joints. Oops. I just looked it up, and i'm right, but it also says "in medicine"-- the crackling sound made when breathing with inflamed lungs. Can be heard with a stethescope. so they're not as badly wrong as i thought.

nancyturtle said...

I'll say it again, dd: I'm so glad you are there!

Anonymous said...

What is your capacity for brief visits from larg bald men? Seems like I'm missing out here. I am so glad that you have so much family.

I've been chasing weakness Mom has been experiencing and convincing her that a diet consisting mainly of wine is not going to work. Turns out she has a UTI and that's why she's falling down all the time. I know you're both familiar with this sort of drama.

Anyway, perhaps you'd like to hear a little music or something, since I'm far too uptight for massages.

Much love. S.

Anonymous said...

Dp-If you need to talk to an expert on SSDI, let me know. It's not me, but one of my colleagues. We're here for weeding, planting, mowing, whatever and whenever. We love both of you. Katie

dp said...

Thanks, dd, for the reminder about Nettie, and miracles.

The world is full of wonderment for me: if a miracle happens where no one can appreciate it, does it carry less wonderment?? *thwaps self*

I'm still snap-crackle-popping. *sighs* Be they air or calcium deposits, they need more massage. Fortunately, Kevin is up for it!

So you should be safe, Sam... We're here and trusting that if it's not a good time to be around us, you'll figure that out. Consider it fine to drop by whenever you find yourself in our neck of da Woods.

Songs are always welcome, as are you. In a few weeks your head should feel more at home here. Have you given any more thought to the Empathy Buzz? My advertising for the band on my head??

Thanks for the offer regarding SSDI, Katie. We'll keep you posted on what we're learning about it. The packet came in the snailmail yesterday and we'll be working through it this weekend.

Am taking fewer meds for pain, but healing from this invasion seems to be taking a bit longer. *sighs*

Wonderful rains are beginning again so I'm heading out to the Storm Porch.

Make a great Holiday Weekend!