Fry Day

...we begin chemotherapy tomorrow at 7:30 am. We received no prior orientation nor special instructions to follow before beginning the protocol, so we're not sure what to expect beyond what we've seen in documentaries or heard from other friends and family who have walked this path.

Twelve hours later we meet with a local woman who does Mehendi Body Art. (That sure fell into place more quickly than I'd anticipated.) She has never done a scalp before but she seems willing to explore the options with us.

I've had to reschedule the SSDI appointment I had for tomorrow morning; that will now happen Monday morning at 10. Did I tell you that the package of info they sent came with a $.39 due sticker? *shakes head sadly*

Tuesday I should be sending my donation to Locks of Love.

Felt the benefits of a full night's sleep in that I was able to do six loops this morning and didn't fall asleep on my feet all day.

Today's massage worked out some final pockets of crepitus -- sure hung around a long time for something that no one warned us could happen. The massage also helped with the residual pain in my right lung from the chest tube.

For anyone who might be interested, Trooley and Kevin will be defending the CR title for the Canine Disc Competition on 6/9. Other than that, we'll be sticking pretty close to home.

Am planning to get a good night's sleep before tomorrow's adventure.
Here's wishing you do, too. *crosses fingers*

Doctors, Doctors,

...and Doctors

Started the day at the U with an 8am appointment with Dr. C. dp had another x-ray, and her lung looks a lot better than it did last week. Still, she's not feeling fully recovered from the surgeries, so we decided to move the start of chemo to Friday.

Then we went off to let Dr. H. look at me -- my ears have been weird since I got sick. Sure enough, one is ruptured (and healing) and the other is full of fluid. She gave me a couple things to clear stuff up.

A little late lunch, and then we were off to meet with Dr. A., Diana's new primary care doc. Diana's known her for awhile, and feels good about her. She's also at the U, and since it looks like that's going to be Diana's main healthcare hangout for awhile, it makes sense to have a doctor who's plugged in there. She listened a lot, suggested mindfulness meditation and reframed the 'what's Kevin done for himself today' question to 'what have Kevin and Diana done for themselves today?' All in all, a fine start.

Both she and Dr. C. encouraged Diana not to be so quick to get off the painkillers. A chest tube is a serious trauma, and pain control is to be expected for more than two weeks. Diana gets around okay during the day, but she's not sleeping through the night. We'll see if we can fix that tonight.

Me? I still think I'm doing okay. I'm settling in for the long haul, and appreciating the 'good days,' which are still way outnumbering the 'bad days.' And in spite of fate's sending a couple of knees to our rhetorical gonads in the past month, I remain doggedly optimistic. Diana is younger and a lot healthier than most lung cancer patients, and treatment options are developing rapidly. If we can't cure it now, we'll manage it until we can.

The photo is of one of the indigo buntings that stopped by a couple weeks ago.

Day After Memorial Day

...tried no meds before bed last night. Slept very fitfully; coughing is still painful and without the pain meds it was more productive...most of the night. Kept Kevin up, of course, but when I move to another bed, he wakes up because I'm gone, so...

It sounds and feels like the crepitus is still there. An x-ray tomorrow morning will confirm that. My lower right lung still aches, and I'm uneasy beginning chemotherapy when my breathing/coughing is impaired and the incisions are still hurting a bit. No decisions until tomorrow morning.

Did manage another five loops of da Lane this morning. Finally finished all of the laundry from Grad Weekend and our house guests *yeah* Was able to get a few things caught up at Mom's.

Am still feeling short of breath compared to how I was moving before surgery. Is it unrealistic to expect that my former lung capacity will be restored with time?? Can we afford to wait a week to begin Chemo? Would I benefit from waiting...healing,

Am missing having not had my Tuesday massage, but I was able to use the time productively and effectively as I took a loooooong hot shower and a bit of a nap. Naps, btw, are getting a lot of press these days. May be just the ticket for those sleepless nights, so we'll be researching that along with other relaxation techniques.

Thanks to Tim, Hannah, Lisa and Else for the emails; I seem to be answering those more quickly than the snailmails I owe, but not as quickly as the blog. I still have thank you notes from our 25th Anniversary last year to send... *winces*

Today is billiards day...one of the few things Kevin does to nourish his spirit. Tell us what you've done today to nourish yours?

Watches

On dpWatch: ...managed another five loops of da Lane yesterday; filled the bird feeders; watched Kevin rebuild the top part of da Path; cleaned up around da Crick; helped run errands; did chores; found myself too tired for much of anything else from early evening on...

...the pain of the incisions and the ache in my right lung are diminishing -- just not as quickly as I'd like. While taking nothing for pain during the day, I'm finding that if I take something before bed, I can sleep more than an hour...

...am exploring Guided imagery, Seated Yoga, Aroma Therapy...

On BirdWatch: ...still have the two oriels, though the indigo buntings seem to have moved on. We also have one, if not two, very small red belly woodpeckers...which reminds me that we haven't noted the flicker or red-headed woodpecker yet this year. The hummingbirds are here along with numbers of blue jays, cardinals, chickadees, nuthatches, mourning doves, woodpeckers (downy, hairy and redbelly), sparrows, wrens, titmice, catbirds, cowbirds and it looks like four red-wing blackbirds are now regulars at the feeders. Also a couple we haven't identified...warblers? thrushes?

On PlantWatch: ...this weekend's rain brought a new layer of lush to da Woods. The front part of da Lane is sporting iris and shasta daisies; cone flowers and roses are coming on. The blue spruce bed is holding strong, as are the new plantings that Katie, Co and Olive put in for us. Under the canopy, all of the hostas are up along with the bleeding hearts, foam flowers and columbines. Astilbe are budding.

...I left some hosta in the hanging baskets over the winter as an experiment, and half of them emerged last week! That's a whole new idea for us, the lazy yardeners. We grow them in containers (large barrel containers), but thought the hangers would be too small and exposed to survive. We'll expand that experiment this year...

On MarieWatch: ...no day care available today, so Kevin and I are doing that. Her weekly hair appointment is on Mondays and will be a little earlier today because of the holiday. Many thanks to Irene for doing Mom's and Dad's hair the past ten years.

...should be warm enough for Mom to spend some time outside today. We're hoping that we can bring her to da Green House for some better bird watching and to see this phase of our gardens. Can't tell if the rain will be early today, or not.

On CancerWatch: We have an appointment with Dr. C on Wednesday to see if the crepitus is gone, if my lung is healed, and if I have nothing else which would prohibit beginning chemotherapy that day.

On BlogWatch: Thanks for the feedback to the last post. Up until recently it's seemed a bit one-dimensional; I guess that's what prompted my questions. Makes sense given that the blog was, initially, a place for us to post detailed accounts and information.

Then some of you began using this as a forum to correspond with one another and it took on another dimension for me. I, too, began logging in daily looking for comments. It's great to be able to share your thoughts, suggestions, ideas and experiences with everyone else.

So, if you're checking in here, please let us know how things are with you, as well.

Nettie, I understand that you got one of those new scooter-chairs. How has that enhanced your getting around? What's blooming in your yard? I'll be sure to pass your comments along to Mom. We've not yet copied the blog for her to read...

Sleeves: alternative interrogation techniques *blinks* Occupational hazard?? Been bowling lately? Golfing? Interesting cases?

Else: What do you, Mark, and the girls have planned this summer? How is Jim doing? Are you still making jewelry? (Did you know that the moon fits into the sun to form a clasp, or was that another serendipitous find for me??)

NancyTurtle: What's blooming there? How are the critters? New birds??

Colleen: The varigated plant with the yellow flowers in the front of the house is called Herman's Pride, yellow archangel. What are you all doing this summer?

Katie: Did the Red Bud tree and other plants survive the trip? Please pass along the following to Tina: Thank you for the letters and support. The notion of the frog as a totem is one that we like; thank your source for me. A frog can only move forward...

Sara: Thanks for the vitamins! Would you send the recipes for the enchiladas, lasagna and smoothies?

Sam, what's up with your clan? Gaining any ground with your Mom?

Liz, thanks for the information on the henna tattoos and for the update on you.

Kevin, what's been on your mind lately?

Looks like today's rain will be here a bit earlier than forecast, so we're off to mow, trim, weed and yarden.

...da Woods, what a healing place this has proven to be!

Have a Memorial Day!!

...and then come blog about it!!

PurpleHatRedShirt Day

...was Thursday for Auntie 'Rie.

...did five loops of da Lane Thursday morning. Got da Flightdeck, front walk, porch, and decks swept before the lunchtime rains came to wash the construction dust away. *hooray* Kevin and I so enjoy our stormporch.

...had a wonderful massage Thursday afternoon. Thank you, Mary and Carol! And thanks to all of you who have gifted us massage the past couple months.

...caught up on returning da Hospital Room here back into da living room Thursday evening.

...paid for all of that, physically, Thursday night and Friday... *sighs*

...Auntie 'Rie was sick Friday; did eldercare.

So I've had time to think around...

One recurring thought was this blog: what it's provided; what it demands; what it's demonstrated; who it reaches; what it costs... Following the NPR blog has been nothing but serendipitously appropriate with regard to our current levels of learnings, needs and involvement; we're suffering from information overdose.

One recent thought had to do with topics for the sCenario. Sure enough, within the past couple days, Leroy Sievers provided me a wealth of topic resources, should we decide to maintain this web presence. This is currently a ... familial ... space, i.e., the blog isn't publicly available (well, we all know the fallacy of security ... *shrugs*). Should it be? Thanks, again, Leroy!

I so appreciate this as a different way to hear from people, and I'm still not sure how all of this works best. Luddite that I've become, I don't read blogs, so I don't know how to post and/or comment to them. *blinks* Lots of resources seem to indicate that maintaining a diary and/or dialogue is beneficial in our kinds of circumstances. Posting here is a good way for us to flex our writing muscles again...

Like I said, lots of things to consider ... and then reconsider...

Today, Mother Nature continues to gently water our new plantings and to gently nurture our spirits.

We count you, daily, among our many blessings.

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...

Jabba

the Hutt.

That's who Kevin says my inflated neck and shoulders belong to...

Time, place, and manner distortions from Friday through most of Sunday...

Woke up this morning looking and feeling like Jabba the Doughboy. It sounds and feels like there's a sheet of bubble-wrap just under the surface of my skin, and others can hear and feel it. "Weird" was one nurse's description...that's a good starting place.

This morning's muscle soreness was actually comforting. I don't know that I'd have gotten out as much as I did yesterday without the provocation of my invaluable in-laws, Olive, Katie, and Colleen; I can't thank them enough. I know we'll be enjoying healthful treats and new garden plants for some time.

Monday morning, the weekend's surgery-grog had taken serious hold. While my respect for the physical rehab component of this 'new job' was nagging at me, my dopey reclining body was clearly in charge.

Monday was one of those 'Why We Live In Iowa' weather days; yardening was the perfect bait. In addition to the fresh air, the mile that I managed to register on the odometer, and the upper body workout, we have new pampas grasses, hydrangias, and another Rose of Sharon.

Five loops of da Lane is a mile. This morning I managed two miles; took me all morning to walk the two miles -- sure am grateful to have had all morning to do it.

Dr. H and MD *laughs at that acronymic representation* provided us with some comfort -- both food and counsel -- and care this morning. Mom is already looking forward to the chicken soup. *grins*

This afternoon's massage was very different. I had no major muscle complaints short of the muscles that had been cut into, so we worked on the snap-crackle-popping edema encasing my upper body. Warm compresses were effective as were the two massage techniques I learned -- would that I remembered the names. The swelling and related wierdnesses are diminishing.

Can't tell you how fortunate I am to have Complementary and Alternative Medical resources in our family. I wish we'd had prior education about this edema, given that no one seems surprised to hear about it *shrugs*

I am looking at various relaxation and stress reduction activities, exploring new dietary possibilities, and working to increase the level of physical rehab I can do daily. I firmly believe that my recoveries have been significantly improved because we did Pulmonary Rehab prior to the surgeries, and I've been continuing with exercises and cardio workout ever since. Add to that the benefit of massage in increasing muscular flexibility and wellness in general and...enough, already!

DonnaMarie, with regard to the sniffing rubbing alcohol to diminish nausea: it certainly worked for a while. However, with time, the smell actually provoked vomiting. I think that some bizarre substances made their way to my stomach and needed to be ejected as opposed to processed? It felt good to puke! The smell of alcohol certainly suppressed the nausea initially, though.

Rod, thanks for taking time when you did.

Kevin and I meet with Dr. C tomorrow. We'll let you know what we learn.

Meantime, hug yourselves for me?