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?

Owwwwaaaaaa!!!

I've been told to log truthfully, so some of you may want to stop reading this and to check in later today once we've spoken with both the surgeon and the oncologist...


...must say, I don't believe I've ever been so uncomfortable for so long *sighs*

Practically unable to move, if Nancy and Kevin hadn't been here this weekend, I'd have checked back into the hospital.

Friday afternoon and night I was in one of three states: moaning, vomiting or sleeping. Kevin and Nancy got only snatches of sleep Friday night as I vomited pretty much every two hours, and they remained steadfastly by my side. *counts blessings* Apparently dilaudid is not the pain killer for me...

The waterbed provided a bit more motion than I could tolerate, so Kevin and I moved onto the futon where I was able to lie flat for about an hour. From there I moved back into the recliner where I was able to get some sleep.

Saturday I stopped taking the dilaudid and started taking the Tylenol3 that was prescribed for pain for the surgery two weeks ago. Later that morning, my normal, aged, chicken neck and shoulders turned into the neck and shoulders of The Pillsbury Doughboy. ...I can hear and feel crackling under my skin -- one eeeeeeeeerie sensation, not to mention how attractive it is.

Since I was in such sterling shape, we were unable to take Nancy to the airport Saturday afternoon; Dede was there to bail us out. Nancy called early Sunday morning to let us know she arrived safely *yeah* Thanks, again, for all you both do for us.

By Saturday evening I could stand by myself, but it was still difficult to find a comfortable position in which to rest, and it was still painful to move. I have no appetite, it's difficult to swallow and the pain is constant, but I was able to sit out on our Veranda until the mosquitoes began putting holes in my veins larger than the IV holes *shudders* Saturday evening I was able to sleep another hour or two. Saint Kevin of da Woods continues to hold his own and mine as well...

Sunday Kevin called the hospital to ask about this horrendous swelling and to refill the original pain killers only to learn later that day that the on-call doctor _didn't_ call in the prescription...he'll be dealing with that today, as if he doesn't already have enough on his plate. So we called our GP, Dr. H, and she recommended switching to hydrocodone which was helpful except that it suppresses coughing and we've been told with these surgeries that coughing and deep breathing are two important things to be doing. So far my coughing has been productive, which means it ain't pretty. *winces*

While I don't have a fever, I flip from hot flashes to chills faster than a menopausal woman on steroids. While I am constantly thirsty, nothing quenches it. While I know I should eat, I have no appetite. While I know I should be walking and exercising, the thought of it exhausts me. While I want to be hugged, it hurts to be touched almost everywhere. The incisions stretching over this edema is a constant burning sensation. The swelling in my neck makes me sound like one of The Chipmonks (the one that sang out of tune).

Last evening we watched a movie, and I did manage to stay awake for all of it. We were both exhausted by 10pm when Kevin finally went to sleep, but I, having dozed most of the weekend, was exhausted and wide awake, so I read for a couple hours. I moved from the futon to the chair only once and I woke up in the futon *yeah*

There is some improvement this morning. I feel tired, but not exhausted. The swelling is not creating as much discomfort. I can lean back, albeit gingerly, on the three incisions on my left side.

We're getting ready to call the surgeon's nurse, and were told that we'd hear from the oncologist today. We'll let you know what we learn.

In the meantime, make nice!

Day of surgery living room

We're home. Diana is sore and groggy, and they gave us stronger painkillers this time.

On a better note, Nancy says it was her understanding that they were going to try to remove the whole tumor from the right lung. If that was successful, it's possible that we're still in the trial.

From what I understand, they'll compare this tumor to the biopsies from the other tumor and the lymph node. If they are all the same, I think that means metastasis, and we go back to the drawing board for another plan of attack. If it was a separate and now-removed tumor, I believe we can ignore it and go back to treating the first tumor.

So hopefully, we'll know more on Monday.

Day of surgery lounge, part 2

Okay. The good news is that a thorocotomy was not required. The bad news is that the mass was cancer. They still don't know if it's the same cancer or an entirely different one (Dr. P suspects it is a second cancer), and I don't think we'll get any word on the until Monday. Then, we'll meet with Dr. C again, and see where we go from here.

Whether Diana can go home today depends on two things: whether there's a leak in her lung that will need watching, and how much pain she's in. They made three small holes on her right side, and Dr. P says that's more painful than the mediastinoscopy.

I'm expecting that we'll get to see her in a couple more hours.

Day of surgery lounge, part 1

Here we are again, only this time I knew enough to bring a network cable.

dp just went over to surgery a few minutes ago. A thoroscopy should only take about 45 minutes, according to some stuff I googled last night. Her anesthesiologist did not give her an epidural this time -- he'll only do that if a thorocotomy is necessary.

One way or the other, I expect we'll see the surgeon by 9:30 or so (It's 7:30 now). Nancy's got a games magazine, and I'm going to try to write some code.

The target moves again

Got to the hospital this morning at 8 am -- dp had blood drawn and then a PET scan. This one took quite a bit longer than the hospital A version done in late March. Maybe they can take longer at the U since the equipment isn't on a trailer waiting to go somewhere else...

About 11, we went to see Dr. C, expecting to sign the consent form and do the official registration for the study. However, Dr. C saw something on the CT scan...

There's a pretty small 'nodule' in the right lung. It doesn't light up on the PET scan like you'd expect a cancerous mass to, but it was suspicious enough that Dr. C wanted to bring the surgeon back in. Badda boom, badda bang, we go back to meet Joan and the same thoracic surgeon (Dr. P) who did the mediastinoscopy two weeks ago. He agrees that it looks suspicious ('it was a good pick-up by Dr. C'), and badda boom, badda bang, we're scheduled for surgery first thing tomorrow.

This is another diagnostic procedure -- they need a biopsy of the nodule, and they're not sure how much they'll have to dig to get it. First, they'll try a thorascopy; a catheter and camera will be brought in through the rib cage on her right side. If that fails, then it's on to a thoracotomy, where they make a larger incision in about the same place, spread the ribs and cut by hand. Either way, the goal is a wedge biopsy.

They aren't assuming that it's cancer, or that if it is, it's the same kind of cancer. Best case is that it's negative, and we could probably still enroll in the study in a couple weeks, after dp's had time to recuperate again.

If we get by with a thorascopy, we'll be home tomorrow or Saturday. If it's a thoracotomy, it'll be three to five days recovery in the hospital.

More on this plot twist as it develops. We need to go do two more hibaclens showers before 5 am. Love to you all.

Dear Diary

Spent the weekend yardening and thinking about this week's app'ts.

Tuesday was the Radiology CT; Thursday is the PET and the final meetings regarding the protocol. Given that schedule, coupled with my wanting to get a few more things taken care of before I begin the protocol on 5/23 -- a week from today -- we've decided that I will do my pulmonary rehab at home.

This is something we feel we can do because the staff at the U's Rehab facility did such a good job educating me and has been so supportive even after I discontinued my regular schedule there (I visited last week while waiting for another appointment *waves to Nurse Nancy and the staff*).

One of our worries was the weather, but Mother Nature is delivering great walking and gardening weather for the next week. Once the temps rise again, I'll be exploring a return to the U's Rehab which we think has been so beneficial in speeding my recovery following the mediastinoscopy, etc.

Unfortunately, the cold that Kevin got a week ago was no better on Monday, so we packed up and took him to the doctor. While there, I got swabbed, as well. Both of us showed negative for strep; Kevin was given an antibiotic for the ear infection. I was given a B-12 injection last week as a precursor to the protocol and we're thinking that's keeping my sore throat at bay...?...

The Radiology CT scan was a bit different in that my chest is now marked and taped with areas that need to be preserved -- for future alignments for the radiation treatments. It produced a 3-D image from which our Radiation Team will plot the paths of radiation beams. We also met our Patient Advocate who was able to arrange an appointment with the Alternative MD this afternoon. I am looking for both nutritional information as well as relaxation/stress reduction techniques.

Nancy has been attending all of our appointments this week; it's been helpful having an educated third ear. It surprises us how often each of us hears something different in the discussions. It's been quite helpful comparing notes after the appointments.

Our apologies for not posting since Saturday, but yesterday a long-time friend, Rod, arrived; it sounds like he'll be able to stay for a few days *yeah*. (Mom not only remembered him, she was amazingly accurate in her memories of our time together over twenty years ago.) Mom's physician also visited yesterday. And both Nancy and I had massages yesterday afternoon. And yesterday's was Kevin's Billiards Day *grins*

I ordered some plants for Mom's East Lawn Garden. They arrived yesterday, so we'll do our best to get those in the ground before the rain predicted for this afternoon arrives. I was hoping they'd be here before we begin the protocol.

Current discussion on the Cancer Blogs I visit are on the topics of "appearance" and the words we use to describe this journey that we're on, i.e., waging war, fighting a battle. Because language is such an interest of mine, I'm thinking of posting there...I'll let you know if I do.

I'm still unsure where I am on the appearance issue...what is normal looking? do we care? will the stares bother us? will my appearance make others uncomfortable? do we care? (Someone noted that shaving one's head bald is becoming a trend *heh*) do we want to talk about this leg of our journey with strangers? with loved ones? when someone tells me how good I look, should I disclose our diagnosis?? can I ever again deal with the greeting, "How are you?" without disdain for how meaningless it is? (I barked at the last nurse that greeted me that way...)

All this, and we're just a couple steps into this job and journey *sighs*

It's been wonderful reading the comments. Thanks for hanging in here with us.

Make a great week!

da Rad doc...

Met with Dr. B, da radiation guy Friday, after Diana had another chest CT for the Chemo Dept.

We had more questions this time, and he was pretty good with answers. He also gave us the full study poop sheet, and not just the consent form. That, along with a fair amount of googling has produced the following information:

Treatment of stage IIIb non-small cell lung cancer (NSCLC) is still very much a developing field. They have learned that concurrent chemo and radiation works better than either alone. The chemo makes the tumor more vulnerable to the radiation, and doing both at the same time gives better results than starting the chemo first. Often, that shows early results, but the cancer comes back within a year or so. Five year survival is about 20%.

To try to increase long-term survivablity, a post-radiation 'consolidation' phase of chemo seems to be emerging as a standard.

The standard chemo drugs are carboplatin and ciscplatin, and there are a lot of studies trying various 'cocktails' of other anti-cancer drugs, usually in addition to one of those two.

This study (CALGB 30407) will use carboplatin and pemetrexed in one group, and carboplatin, pemetrexed and cetuximab on the other.

Pemexetred is an antifolate that kills cancer cells by inhibiting enzyme reactions they need to live. Cetuximab is an epidermal growth factor receptor inhibitor (EGFR) that has been shown to inhibit tumor growth and increase vulnerability to radiation. Trivia fact: cetuximab was grown by ImClone. If that name sounds vaguely familiar to you, it's because ImClone was the company with which Martha Stewart was accused of insider trading.

In addition, the radiation treatment is little stronger and a week longer (200 cGy M-F for seven weeks). They've made a lot of advances there. Next week, dp will go in for a special CT from the Radiology Dept.; this one just to map pathways to the tumor. With a 3D map, they'll figure out what sequence of what pathways will deliver 7000 cGy of total x-rays while keeping the amount of radiation to the heart to less than 2500 cGy, the amount to the spinal cord less than 5000 cGy, and the combined lung volume receiving 20 Gy will be less than 40%. Dr. B made the analogy of four or five little flashlights, all pointing at the same spot from different directions -- while everything around it gets some light, most of the it is on the spot. Gy stands for 'Gray' -- the standard measurement unit of radiation, and cGy is a centiGray -- one 1/100th of a Gray.

Next Thursday, she is scheduled for another PET scan. Then on day 1 (May 23, if all goes well), she'll get get her chemo. The pemexetred is delivered IV over 10 minutes, and the carboplatin over 30 minutes. That happens once every three weeks. If she's in the cetuximab group, that will be delivered IV over 60 minutes once a week for 7 weeks. Since some people have an allergic reaction to cetuximab, the first week it will be delivered over 2 hours.

The carboplatin/pemexetred is 4 cycles of three weeks each, so she'll be on that for the first 12 weeks. The next 12 weeks is the consolidation phase, where she'll get just pemetrexed once every three weeks.

Side effects are pretty much everything you hear about -- low white blood cells (high susceptibility for infection), low platelets (increased bruising/bleeding) and low red blood cells (anemia and fatigue), headache, nausea, loss of hair and loss of appetite, skin rash, 'chemo-brain' (I'll let dp tell you about that one), skin rash and irritation. Any fever over 100 takes her to hospital, and there's an elaborate list of anti-infection procedures for us to learn.

Still, both Drs. B and C said that the goal is cure.

The danger of infection during the protocol means that we'll not be doing any travelling for the duration...probably the rest of this year, and we'll be accepting Guests on a sporadic basis.

We're a bit concerned about finances. The pemexetred and the cetuximab are provided free by the drug companies (Lilly and Squibb, I think), but the study calls for four more CTs during the study, three in the next year, and two a year after that. It doesn't pay for them, though.

I've been through my insurance policy, and I can't find anything about studies one way or the other. It does have a technology clause that says that all technology must be approved by the FDA, but the drugs that aren't approved aren't charged to them anyway. So far, they've had no problem getting pre-approval for the new CT and PET scans, so I guess we'll know if they balk before we accrue the cost.

Diana's larger financial concern is whether the insurance will cover any of the possible long-term injuries which could be sustained as a result of the protocol. Or that the experimental drug will go commercial and that we'll need to cover the $17K/mo. for the cetuximab.

I'm thinking I'll go talk to my HR director Monday...

Meanwhile, I've been home sick with a cold since Tuesday. Thursday morning, I was thinking I'd be ready to go back to work by Friday, but by Thursday night I had a new sore throat, no voice, and a nasty ear ache. I was whispering questions to Dr. B, but I'm feeling and sounding more like myself today.

Now Diana has a sore throat...

And it's Graduation Weekend -- we've had Guests reserved since last fall, and there is nowhere we can refer them. Nancy held down the fort while we went to the hospital yesterday, and helped Diana do breakfast and cleanup this morning. I mostly stayed out of the way. I think folks are happy -- the weather today is absolutely glorious, so that should help.

Trooley and I put on a frisbee show, and now we're both pooped. Diana has slept a good part of the afternoon -- I guess I should start thinking about supper.

The photo of the two jays was taken last week...birds of a feather...

da Chemo doc

Diana, Nancy and I went back to the hospital today, and met with Dr. C (why not?) in the Chemo Department. He was cool -- quiet, knowledgeable, patient and earnest.

The node that had the cancer (non small cell, just like the tumor) was R4, R meaning right side, so staging is now 3B. Aggressive chemo and radiation is the standard of care, but he's recommending a clinical trial. Carboplatin is the standard, and they want to add permetrexed and maybe cetuximab (there are two groups in the study) to see if either or both will improve the success rate, which is currently under 50%.

The treatment consists of 6 weeks of radiation therapy, Monday - Friday, concurrent with 8 chemo sessions, each three weeks apart. Diana gets a fresh CT and PET scan before she starts treatment, and then a CT every 6 weeks during the treatment to assess the size of the tumor.

The radiation people have to sign off on this first, so nothing is confirmed until after the Friday appointment, but our inclination right now is to go with it. Dr. C said that if it were his wife, he'd want her in the study. He also disclosed that his wife also has cancer, and is part of a study that began some years ago.

If we do go with the study, we're not allowed to add any other wrinkles, like the wholistic Doc. We need to make the decision in the next day or two.

We also met with Joan, so that she could look at the incision from the mediastinoscopy. She said that the U does do radio frequency ablation. They've only just started doing them in pulmonology, and that's been with people who are too infirm to undergo surgery.

Diana is scheduled for another CT scan on Friday afternoon before her appointment with the Radiology Department.

She is off of the painkillers as of today, and is feeling better daily except that her hot flashes are back with a vengeance.

The photo is last year's trillium, but that's pretty much what ours look like now...

Monday, Monday...

Apologies for the delayed post.

I don't remember much about Friday morning and early afternoon; between the general anesthetic and the epidural, I was pretty out of it until Friday evening, when I was able to join Doc, Olive and Kevin for dinner. While I didn't have much appetite, I was feeling well enough to suggest a Bridge game later that evening. Ahhhhh, the road to hell may be completely paved with my good intentions before all of this is over... I went downstairs promptly fell asleep *sighs* Thanks, folks, for being so understanding.

Saturday morning I still felt pretty good, considering, and was able to spend some time chatting and birdwatching with Doc and Olive. And, what a bird morning it was! While we've seen oriels cruising through da Woods the past three years, none have stopped to enjoy the oranges we'd put out for them. This Saturday we had two of them around most of the morning! Can't tell you how terrific they looked with the four indigo buntings, six grossbeaks, and more than twenty blue jays that showed up that day as well.

I couldn't believe how good I felt all afternoon so I didn't feel the need to take any pain killers -- until early evening when I doubled up with a pain that was horribly reminiscent of the pain that took me to the doctor's office on March 8th. For a while we thought we'd need to make a trip to the emergency room, but the meds kicked in enough to make the pain tolerable; didn't do much to ameliorate how stupid I felt as "Don't let the pain get ahead of the medication" rang in my ears *thwaps self*

I was able to sleep some Saturday night, but by Sunday it was clear that I had been feeling good because the anesthesia was still in my system, and that all of the walking around, stair climbing and deep breathing that I could do was only possible because I was still numb -- apparently mentally as well as physically *sighs* What I was feeling the night before was the pain of the mediastinoscopy exacerbated by my well intended exercise. *sets another paver in the road*

By Sunday afternoon it became clear that I will probably put more of a dent in the bottle of meds they gave me than I originally thought I would. Sunday evening the Ted Koppel special, "Living With Cancer," aired on the Discovery Channel. As I drifted in and out of sleep all day, we decided we should tape the show -- a very good idea! (If any of you would be interested in seeing it, we'll save the tape.)

I managed to watch most of the show this morning while we were waiting to hear from...someone...we weren't sure who. We were told that we would have a follow-up appointment with the surgeon on May 17th, and that we would be referred to both radiology and chemotherapy to deal with the cancer found in the lymph nodes, but nothing more specific than that. Kevin and I are uncomfortable with no information, direction, or plan, so we've been somewhat on edge all weekend.

The nurse from Rehab, let's call her Nancy, called this morning -- just to see how I was doing. I understand that she came down to check on me immediately following the surgery on Friday, as well. What a caring, conscientious group of medical professionals! She cautioned me to slow down, to follow the course of meds I was given, and to plan to sleep as much as I can. I won't be allowed back until I'm pain and med free...

This afternoon we heard: Wednesday afternoon we meet with chemotherapy, Friday we meet with radiology. We'll also have the incision wound looked at on Wednesday, instead of waiting until 5/17. The wound is a bit swollen, but seems to be healing well *crosses fingers*

In the meantime, we are trying to learn more about Radio Frequency Ablation (RFA) and where it might be offered near us. It's the new technology that was used to literally burn out two tumors in Leroy Sievers, the focus of the Ted Koppel show last night, who has been blogging about his cancer on the NPR website since February 2006. He is currently tumor free, but doesn't feel that he'll ever be cancer free...

Closer to home, our SisterFriend, Nancy, will be here tomorrow. We're looking forward to having her and grateful that she's taking the time.

Lastly, today I learned that our good friend Bob, a looooooooong time smoker, has also stopped smoking. ...he knows how long I've been waiting to hear that; you're in our thoughts, Mister!

So now you know as much as we do. What do you know??

Back to the drawing board

Well, the good news is Diana still has both lungs. The biopsy of the lymph nodes showed another tumor, and the surgeon isn't willing to take her lung while that's there. I guess Monday, we'll start working up another plan --something with chemo and radiation, and maybe surgery will be an option down the road.

So, Diana will come back home today. I guess we still know more than we did two months ago, but it feels like we're kind of back where we started.

Dad pointed out that we definitely made the right decision -- the first surgeon was going to remove the lung without biopsy, so this would have bit us six months down the road, after her lung was removed.

That's about all I have for bright spots right now, though...

Sorry -- no internet access in the 'day of surgery lounge.' We just got home -- apparently, one of her lungs 'leaked' during the mediastinoscopy, so she has air outside her lungs (pleural cavity?) They took a couple of x-rays to make sure everything was okay, so recovery took longer.

Diana is groggy and nauseous, but she's got Trooley on her lap and a half-smile on her face.

More later -- we're beat.

It was the night before surgery...

We got to the hospital at 9, but the pulmonary function test didn't actually start until 9:40 or so. They really only did one test, so we still made the 10 am appointment with the surgeon.

...Only, no surgeon. He was doing an emergency surgery, so we met with our nurse-practitioner case manager instead. She did a pretty good job of dealing with da questions:

We arrive at 6am, she's supposed to be in the operating room by 7:15, and the procedure will probably go 4 to 5 hours (although his posted average is 6.2 hours.)

Diana should be extubated before she even gets to recovery. If everything goes as planned, she'll go from recovery to a private/semi-private room -- no need for ICU. Pain management will be a epidural block and personal pump for the first couple days, then just the pump, the dilauded (sp?) as necessary. Colace and sennecide will be used to keep her regular (hey, you asked).

They do have internet access, and a pet visitation policy. We don't know yet if that includes the 100+ lb. variety, but the case manager pointed out that after 2 - 3 days, we could probably take Diana on field trips out of the hospital.

The anesthesiology workup was supposed to be at 1:30, but our case manager (that's gonna get unwieldy, so let's call her Joan) said they didn't used to have appointment times, so she still sent people at will. We got in there around noon -- I didn't go in, but Diana said it was mostly about the epidural. Out at 12:45, Diana headed out for a massage, and I went to work.

My parents got here shortly after that. Either today or tomorrow (depending on whether you listen to mom or dad) is the 14th anniversary of my dad's surgery -- don't know what that means, but it seems to me that if you have to be stressed and waiting, it might as well be on a nice spring day.

I'm babbling -- it's after midnight and we're getting up at 4:30 so Diana can take a second Hibaclens shower -- she's finally got her books in order, and she's starting the first one now. According to Joan, the U has a very small post-surgical infection rate, and there had been no serious issues in the five years she's been here. Still, I've showered, and we've changed the sheets and the towels.

We appreciate all of the prayers and thoughts of all of you, and I'll try to let you all know what's going on tomorrow.