More Watches

Body Watch:

Beginning yesterday, I noticed a diminished capacity in my right arm. I have almost no gripping power; I can't pull a weed, flick a lighter, nor carry anything of any weight. Most of the weekend I felt nausea in the background and headaches in the foreground -- Uncle Shorty would have described it as being a bubble off... I tire more readily...

Am wondering if any of that is related to the surgical injuries sustained in the second surgery. Those incisions, and the incised muscles, are now in their fourth week of healing and we know that I've been compensating with other muscles to take care of the more immediate injuries. Will talk with dd about this. Could also be a side-effect of the chemotherapy which was administered into that arm...

I'm doing my mile and noticing that I'm not gaining any speed, nor am I feeling energized to add another lap. I'm sure that filling the dozen and a half bird feeders and the daily weeding that I inevitably find myself stooping for are adding some, but it's not the extra laps yet... Am sweeping and digging for my arm exercise...like feeding two birds with one orange *grins* Am also doing grip stretching exercises -- not noticing lots of immediate improvement, but for now it's not getting worse.

Mrs. B is willing to wait to teach us the Mendhi Art, which means it will probably happen in two to four weeks. She's getting us the supplies so we'll be ready to go once we send my hair to Locks of Love. The wait is because there's a chance that I'll only experience hair-thinning as opposed to hair-loss, and perhaps no loss... We have a fair amount of hair products to use up here before I lapse to another style...



Marie Watch:

Overall, she remains well. Her back bothers her much more these days. The two weekly massages have been helping to make her a bit more comfortable, and we both appreciate that. She has another pressure sore on her right foot. It took me almost a year to heal the last one, which was ten times larger than the current one. The necrotic spot isn't getting any larger, but it isn't shrinking, either. Will get in touch with her podiatrist.

We understand that Marie's youngest daughter, Susan, and our sister-in-law, Patty, will be visiting in the next weekend/week. We know she'll be thrilled to have the company! She sure perked up when Rodney was here!



Plant Watch:

Up near the mailboxes, the clematis are blooming on the signposts. The echinaceas are ready to pop along with the striking blue stalks of the lambs ears. The pink, red and yellow rose bushes are in bloom. Another is close behind -- not sure of it's color.

Two...weeds, probably, but they're putting out a beautiful yellow-white blossom that reminds me of squash... They're on the edge of the long bed where they won't bother anything, so we're gonna watch 'em...

Astilbes are blooming all around our yard against the backdrop of sundrops and two vibrant orange hybrid daylilies.

Yesterday Kevin mentioned that we added some bareroot plants: two forsythias, two white spirea, two red wieglia, and two more pink Rose of Sharon. We also added a new miniature cattail to our pond and took some water lettuce over to the other pond.

Olive, Katie, and Co: It looks like only two of the three pampas grasses at the head of the long bed have made it. The Rose of Sharon is holding well. Do you remember where the hydrangias and other grasses were planted?



Critter Watch:

Raccoons have eaten through a plastic birdseed container on our front stoop. Trashed the lid and put a 4" hole right under it. *sighs* So, we've armed ourselves with some metal cans like we have in the back. We've expanded our feeders up to Mom's house (4) and in front of our house (8), so we need a larger stash in front.

The two black squirrels are sticking pretty close and I think the six grey squirrels are still homebasing from here. The chipmonk population continues to become tamer...walk up to within a foot of my foot with little concern.

We still see six fish, so Bardo isn't eating _there_. *crosses fingers*

Other birds aplenty! The wrens in our front Hat Houses have hatched; I can hear them peeping softly. Don't know how many, but now we need to watch for crossing wrens as we come up the front walk. *smiles*



Other Watches:

Thanks, Janet, for the visit this weekend; we wish you safe travel home and are looking forward to that cup of tea and chocolate treat. Today a former student was here as a new employee of the company helping us with Marie's care. And, a long-time-no-see friend showed up in town.

Overall, I must say we're doing as well as can be expected, and maybe a bit better. *grins bigly and knocks on wood*

What have you been Watching??

First and Third...

...which could be a corner in Our Fair City or, as Sam mentioned, the results of Trooley/Kevin and Trooley/Diana at the disc dog competition in Look-at-Bunnies on Saturday.

Other than that, though, we don't have a lot to report. dp has had minimal nausea, and we both felt pretty low energy.

Sunday we ran some errands first thing in the morning, and planted the eight bare-root trees that finally arrived on Friday. Even though it didn't take very long, by the time we got done, all three of us were pooped, so we spent the rest of the day dozing.

So now I'm off to work, while dp continues to heal in anticipation of Friday's gemzar treatment.

How was your weekend?

Sleeping Thru Treatment

...this time, though I must say my anxiety was riding high enough to move my 130/80 BP at check-in up to 156/90 within minutes of entering the ChemoSuite. I really didn't see sleep on the horizon...

Kevin and dd were there to help make me as comfortable as possible. For med prep I was given anti-emetics and another steroid (a lesser one, David, but we're prepared with something to lessen that tonight, and we are paying attention to them thanks to your caveat *bows - and ribbons - in thanks*). No antihistimines this time.

That was followed by the gemzar which was followed by the carboplatin, three hour total.

Kevin had the laptop so he could work while we waited. It also gave us the iTunes which we could both listen to since the Kevin the Geek was also packing a headphone splitter. *grins*

I remember the carboplatin being hooked up, but little else until Kevin woke me to say that we could leave. We were able to catch some lunch and still get Kevin back to work so the schedule for next week would be done.

We return next Friday at 7:45 for only the gemzar -- and the weekly vitals and counts.

The protocol will be both drugs on Wk.1, Gemzar on Wk.2, no drugs on Wk.3, just vitals and counts. CT's are scheduled every two cycles. Gemzar reportedly causes only hair thinning over time; am thinking I'm still going to shave my head, just a little later down the road. Lance Armstrong said he monitored his vitals and counts the same way he did his sports stats and we see it as a part of the weekly data generated by this new job of mine.

So far, I'm feeling pretty normal physically...jury's still out on the mental... We've heard that drinking lots of water helps push the chemical out; we're wondering if exercise won't help with that also, for as much as I can do. ...probably explore that this evening when all of the meds are on hand.

We were told they would provide us with out weekly vitals and blood counts for today and last Friday as well as some relaxation tapes. When this began, I was taking no prescribed medications; in front of me is a table full of pill bottles, cough medicine, nasal sprays and an inhaler *sighs deeply...without the inhaler*

A woman named Karen contacted me with a list of local resources for yoga, Mindful Meditation, healing touch and massage. Colleen sent a DVD that she and Doug recorded of 'Morning Yoga.' I've discovered Namaste Yoga and began taping some of those. Karen also mentioned the benefits of making her own fresh juices, and I'd sure appreciate any suggestions and recipes for exploring that option, starting with whether we want a juicer and if so... TIA

All of this is pretty foreign to me; I'm not that-side-of-the-brain sided *shrugs*

dd has taught me much about the benefits of massage therapy _before_ one is injured, or otherwise 'needing' it. I am much more in touch with healthful breathing as a result of massage. I'm convinced that the mind-body work I've been doing these past years helped me recognize early that I was having a negative reaction to the taxol lst Friday, and, perhaps, to the discovery of the tumor initially last March.

So much more to learn...

Karen's letter was also one of the most calming pieces I have read; thanks so much for that. Her's and the letter from Sally via Lisa moved me beyond words. I would love to share them here and have asked for permission to do so. In the meantime, know that you're all greatly appreciated.

Rodney, your metaphor is just too perfect! We trust that this means you made it safely home; regards to your Di Ana *waves* ...it might be time for me to reread that book *looks at the stack collecting*

David, your post was a pleasant surprise! Thank you so much for sharing. We realized again today how much yet how little we're told to expect. On the one hand, I can see that we can self-fulfill prophecy, but on the other hand, it would have been nice to know that I can expect a sore right lung area for a few weeks...up to a year. So far, the steroids have only immediately preceded the protocol, but what I experienced Friday night from that small dose coupled with your warning will keep me on top of that, yesiree.

And, Jon, please call again the next time you and yours are in the area. Sorry we missed you last week, and hope we'll have another chance to touch base. Blogged earlier to tell Deb that we had holes to dig. We still do *grins*

Hey, Michael, when you're ready to till again, let us know?

Sam, you is da Pip! Thank you for playing -- and for playing so well! *hugs* Reading you here reminds me that I've missed your writing. You're one of the reasons I log in here, as well, and I'm looking forward to more. Thanks, also, for taking time to stop in tonight; I'm uplifted -- and, no, I haven't hit the med stash yet, you shilly sit! *ducks*

How are all the rest of us doing???

*gets ready to enjoy a salmon steak and salad (with Kevin's homegrown basil)*

Make a great rest of it!

Diablogging

...is the best thing I can call it.

I'm not sure that we, as the originators of "the sCenario," are supposed to respond to comments. Blogs that we read are pretty much a one-way communication; someone posts information and others respond to that post.

"the sCenario" began so that we could most efficiently share information, and it's evolved into an information center beyond the two of us. It's delightful to read the comments. Although I must admit I've never been sure just where to respond, it's been fun responding to them, as well. We're also amazed at just who has been checking in here.

In reading back, I've posted comments that were longer than the blog posts. Should those have been posted elsewhere? Or, is that the proper place to respond? Seemed that a reference to a comment might be obscure in a new blog post, particularly if one doesn't read the comments. Then again, it might be a way to highlight a comment that someone else might have missed?

While this blog isn't in the public list of blog links, the readership is growing. And, we encourage you to share this space with anyone you feel would be appropriate. I've been asked if I'd consider making it public and am disinclined to do so at this time.

If you've been reading the comments, you know that we have a number of literate, not to mention entertaining, friends. This has become a place where we've been able to get information in addition to sharing it. A place where our friends and family are able to meet and exchange. A place where we can dust off those writing skills under the guise of staying in touch. A place where we can touch base with the normalcy in our worlds.

Diablog with us?

The Unposted

David, Rodney, Tuna, Karen, Lisa, and Sally, today's post is about the diablog that seems to be evolving here and from here, but since I didn't blog yesterday, I'll finish today's post after dinner and share the following right now:

These random notes have been sitting on my desktop for a few days. They're written in response to a number of articles from Leroy's blog, but it never got posted there:


Leroy, your topics have resonated in our space, as well, since we found you in March; clearly we aren’t the only ones. *smiles*

An unexpected second surgery has kept me from posting for the past few days, so please excuse the long post:

“Google Knows Cancer”
...we are only three months into our blog and in need of redefining it’s purpose and perhaps the way it functions.

Our extended families are extraordinarily literate and have been participating through the comments so that it’s become more of a diablog among all of us. It feels like a small bbs (precursor of both chatlines and blogs).

Your article has been archived for our future reference.
*bows in thanks*

---------------------------

“The People We See Every Day’
...what an amazing thing for “New York Magazine” to publish! Do you think other publications would be interested in doing the same? Might they also consider pages of people living with diabetes or MS or deafness or any multitude of IllnessCommunities? (CancerCommunity seems more fitting for me right now than CancerWorld, but that’s another post.) It’s such a wonderful awareness provoking and educational idea...

FWIW, I first saw myself in The Viet Nam Fallen...

The People We See Everyday are the same peoples that I’ve been looking at for years. It’s _my_ view that continually changes, along with my expectations for all of us.

I generally look at everyone and see ourselves, which means 1) I don’t expect them to know or care about our cancer, and 2) I expect to need to take care of them. ...when I can’t see our/myself, it’s time to take a time out *smiles*

1) I vacillate from wanting everyone to know, to wanting no one to know. The latter is slipping out from under me with time and because of the natures of our extended families.

2) I haven’t even started chemotherapy yet, but it’s clear to me, just from my two recent surgeries and recent preparation for chemotherapy, that my having cancer makes a number of people, including myself, uncomfortable. Comments in your blog also reaffirm this notion. *shrugs*

We’ll certainly do what we can to educate and take care of those not part of the CancerCommunity, but I’m beginning to think that it’s just as well that we’re being advised to stay isolated to avoid infections during chemotherapy.

I hope to spend some of that time reminding myself of what I’ve learned in the past about the HearingandSeeingInpairedCommunity, the AltzheimerCommunity, the AutisticCommunity, the HIV/AIDS/Communities, the HospiceCommunities, etc. and how they educated me, so that I can reincorporate those skills into my repetoire.

---------------

“The Challenge Our Friends Face”
...helped to remind me that many of us do do unto others as we would have them do unto ourselves. Being a good friend is difficult, even in the best of times. I have been told, “I am your friend, and I’m sorry.” It was more than enough. It helped a lot.

Linguiphile that I am, I have learned that a touch, or a look, or a nod, or just being there in a manner similar to the one described in “Death and Dying” can convey more than the proverbial thousand words promised by a picture.

You have been a good acquaintance, friend, and ally to many of us with your words. You’ve prompted me to write again. Perhaps we can help teach you how to be comfortable with the silence?

-----------------------------

“When Do I Stop Being a Cancer Patient?”
...once a member of the cancerCommunity, always a member. Your personal and vicarious experiences remain poignant and invaluable to the rest of the community...to the rest of the World.

Seems to me the tough balance for you is how much of your cancerCommunity self you can continue to share and how much you need to reserve for a more personal audience, and that for as long as you want to be a participating member of any Community, you’ll be welcomed. *shrugs*

Hearing the word “cure” initially was shocking. I’d been taught that we all have cancer causing cells, and that each of our immune systems deal with them uniquely. Being ‘in remission’ or ‘out of remission’ was the referent...or does that only apply to certain types and stages of the disease?

Thank you for facilitating this thought provoking forum.

Make a great rest of the night.

Daze Away

...three daze, actually. *sighs*

The steroids I was given Friday kept me up Friday night. Saturday I did my mile and some work in the yards in the morning, but soon after lunch, I was zoning out. A short nap helped, but not much. I'm afraid that I fell asleep during our movie date after dinner... Though I don't think Kevin was far behind; the debacle Friday morning didn't 'freak him out,' but I know he had a couple starts during that time.

Sunday we were mostly just exhausted. When I regained consciousness that day, Kevin had finished staining the new window frame in the game room. He did a beautiful job, though we doubt anyone but he and I will notice it...well, maybe a couple people. *winks*

Monday morning I did the interview for SSDI. Aside from their calling a half hour later than they said they would, it went relatively smoothly. We need to get a couple things copied, notarized, signed and to their office; they're as good as done.

Sounds like I'll be approved, but having just seen the trailers for "Sicko," I'm not taking anything for granted. We are, after all, the Black Hole for All Agency Screw-ups *heavy sigh*

Did another mile on Monday afternoon; I'm doing a 20-min mile. Can't calibrate the incline up the curve, but I think I'm doing pretty close to what I was doing in Rehab. Have spoken with Nurse Nancy and told her that Dr. A will set a standing order, so that I can be in Pulmonary Rehab whenever I feel like I can get there. Thanks for checking in, NN, and again my regards to everyone there.

Today I did another mile, took a looooooong hot shower and thought about the blog. I've started a topic list, which I clearly don't need to tap today *thwaps self* If there is anything you'd like to add to that list, let us know. My right lung aches differently daily, each day feeling a bit better. The incisions are still distracting me waaaay too often - although now the 'healing itch' is the distraction from one of them *grins and scratches*

Had a long and healing massage this afternoon. dd has been coming here for my massages since the last surgery, but there's something special about being in her studio on her table. I'm still feeling the effects of that...

Sorry, Katie and everyone, for not being more clear that I'd had an allergic reaction to the Taxol on Friday; thanks, Nancy, for clearing that up. I remember taking castor oil as a child, though I don't recall my siblings having to take it, which means I didn't take it for long. Kevin also remembers it. And, no, I don't recall ever having had an allergic reaction then, but from what I understand, we're all susceptible to various allergies at all stages of our lives. I'll ask Mom if she remembers anything.

Thursday I'll meet with our lawyer to finish the next step in closing Uncle Shorty's estate.

It sounds like we'll be switching on Friday morning to a new chemotherapy drug called gemzar. If I'm not allergic, complete hair loss may not be an issue. I've put off cutting my Locks of Love donation another week. Will move the Mehndi Art instruction date, as well.

We're needing to deal some Inn things with regard to Gift Certificates that we've donated for silent auctions, etc. Two of them rose up this week and Kevin was ably to deal them gracefully. A sister Bed and Breakfast has agreed to honor any gift certs that someone might want to cash in. That will hopefully take care of the one, and the other was for a Weekend Family Gathering. Fortunately the latter hadn't sent in any reservation money, and there is still plenty of time for her to find another venue.

Dr. C says I'll need to stay in a controlled environ, so we're telling anyone who calls that we're booked. It's actually having the effect of making us seem pretty darned exclusive -- would you, perhaps, like to book a room for the Summer of '08??

Anyone, that is, beside the friends, family and former students who came from all kinds of unexpected and delightful haunts this past May. Something to do with there being a Blue Moon last month???

We have a long list of thanks-yous for foods, funs, well-wishes, base-touches, and not so random acts of kindnesses - just in this past month. Am not sure how best to deal with them *ponders something beside this brief mention*

I don't imagine there will be any news of note on our front before Friday. So I'll work on a not so noteworthy post for tomorrow...

Make nice!

dp Flunks First Day

...how embarrassing!!

We arrived a bit early and moved quickly through vitals since we could use the blood draws done on Wednesday. I'm holding with the 6-7 pound weight lost. I'd like to lose more, but this protocol also seems to be a weight, as well as a hair, loss program. My blood pressure and draws were all good.

We met briefly with Dr. C and were then led to the Chemotherapy Chambers. dd walked up just as we were on our way, so she didn't have any trouble finding us. ...probably less trouble than finding a place to park her Scootie, but she can tell you about that. *grins*

The chambers each hold two, maybe three, people. Ours had two. The stations are separated by curtains, which we learned today don't really protect the people on the other side *sighs*

The procedures and anticipated side-effects were thoroughly explained, and I can't tell you how glad I was that there were four other ears there. (Well three, if Kevin still isn't feeling up to par.) It was to take 4-6 hours since this was my first day.

They administered a steroid, two antihistamines and an anti-emetic prior to beginning the procedure to minimize the standard side-effects. I'll let Kevin and dd tell you the names... They inserted the IV and kept me on a blood pressure and blood oxygen monitor. The first push was the saline and that went pretty well.

Nurse K told us that she'd be sitting with us for the first 15 minutes of the injection of the Taxol to monitor for allergic reactions, like the throat closing, the face and ears turning red or shortness of breath. The first injection was only 3cc. Other staff was notified that I was a first timer.

Nurse K had just about enough time to see the Trooley video and dd had just enough time to return from her appointment before my throat began to itch at the base of the palate and the pain at the base of my spine became...well I thought I had about a "4" pain level, but I could hear Kevin yelling it had to be at least 7 or 8 from the look on my face as they pushed him and dd out of the chamber to make room for the four nurses, the oncologist and the crash cart... I had taken only 2cc's...

I could find no comfortable position in which to sit, lie, or stand; I began feeling like I would feint (see the PS in comments); a burning sensation started around my urethra (though I wasn't urinating...); my ears began to redden, my blood pressure plummeted and the pain in my spine worsened.

The Taxol IV was pulled, saline was immediately pumped through the IV and I wss shot up with epinephrine in preparation for the crash cart. The crash cart wasn't needed, but Nurse K said that next time she was going to have the epinephrine drawn before she administers Taxol to an FNG.

I overheard Dr. C tell Kevin and dd on the other side of the closed curtains that "things should be back to normal within a few minutes," and they were...well, I'm not sure that I have any gage of "normal" right now...

We were told that nothing more would be done today, that I needed to recover from this adventure and that we would try again next Friday -- with another protocol. They kept us there to monitor for another forty-five minutes before letting us go home. I wanted to, and was able, to walk out on my own steam -- as chemically altered as that might have been at the time.

Kevin said, "It got pretty exciting there for a while." What a whiz with words; you might call or ask him to blog what he _really_ thought. ...I'm not so sure his pants aren't full, again, Sam -- mine sure felt that way for a while. ...and, this is probably too much information *sighs* ...mayhaps Sam will explain the reference?

In the meantime, I'm now feeling pretty much like I was yesterday...some residual pain in my right lung when I cough, but I slept five hours straight last night. Now I'm getting a small headache -- probably from being at the computer so long as I've commented to posts as far back as "Watches."

NancyTurtle has an account here now, so you can click on her profile and see where she lives. Right now her profile shows you a nifty panaramic photo that pans from left to right so you can appreciate the physical isolation of her being off the grid.

I'm looking forward to meeting the Mehndi woman tonight!

Make a great weekend!

*toddles off for some non-NSAID pain reliever*