Healing Places

Well, things are getting a little tougher, as I was warned they would during the 4th and 5th cycles. For the first time I had to take an extra medical leave day after spending nearly half a day getting dressed for work but consistently also getting dizzy and short of breath walking from room to room and as a result spent most of the last 3 days hanging out in front of the new TV on the recliner. Which is really not such a bad way to spend 3 days if you ignore the dirty dishes piling up and the undone laundry and the basically absence of any productive activity in your life. I suspect the problem was mainly a hemoglobin (the stuff in your red blood cells that carries oxygen and thereby fuel to the rest of your body) that keeps hanging at barely 8 despite erythropoitin for 3 weeks in a row, a bit of dehydration from not being careful enough about how much I was drinking. And maybe it matters that for the first time my ANC (absolute neutrophil count) was below the risky point where I have to have it checked again on Monday and, if it has not come up, have to delay the chemo dose for a while. Hopefully that won't happen. But it also means that I probably need to get more serious about avoiding crowds and therefore opportunities to get infected. Suspect I will be taking more medical leave days and working from home more for the fore seeable future. And Maybe there is a transfusion in my future.


But it was predicted. It removes the concern I secretly had that maybe the chemo was not going to work because it had all been just too easy so far. AND I have such incredible support. Examples below:

HEALING PLACES 1:

An interesting recent string of possibly unrelated events. First there were those intermittent supportive emails from Debsingsongs (Mac never but SOB sometime between '68-'76) and her sister from North Carolina. Then out of the blue there was that Facebook message from Charmaine Mac '75 and SoB '75 offering to put me on her congrgations' prayer list. Since Charmaine has traded in her gigantic AFro for the title Reverand but kept the soaring singing voice, I suspect that is a pretty large prayer list. Then there were, in rapid succession, the supportive email from Andrea Tibbet SoB now, then Gary Mac '74 SoB '68-2010 forwarding a newpaper article that originaed with Debsingsongs, followed by a second email from Gary Mac '74 SoB '68-2010 containing those emails that speaks instead of typing, specifically the song
The Path to Healing" from the most recent Sounds of Blackness CD "The Third Gift" leading into a string of selected voice emails dating from the days of prep for the Mac cluster reunion in June of 2009 (carefully selected to eliminate all the ones accompanied by the sounds of gnashing of teeth and rending of cloth to leave only those evoking happy memories).

Prehaps I imagin it. But it feels an awful lot like a conspiracy of support.

Thanks guys. Your timing was excellent, arriving just when things got rough. My technologically unchallenged nephew Judson instructed me on how to drag to iTunes (at least I hope it succeeded but just in case i am holding on to the original email, whcih I listened to again tonight).

And maybe this is a good time to reciprocate by copying in the message below for any one who wants to know how to access the most recent CD from that group that began as the Macalester College Black STudent Choir and grew into the 3 times GRammy award winning Sounds of Blackness. (see below)

"THE 3RD GIFT" the new life-changing CD by Grammy-Award winning SOUNDS OF BLACKNESS.
Available Now At BEST BUY, Sam Goody, Electric Fetus and Online At Borders.com, Amazon.com,
CD Baby, ITunes, Best Buy.com, Wal-Mart.com, IODA
Please Call your local radio stations and request our 2nd Single “GOD IS LOVE” from our new CD,
"THE 3RD GIFT: STORY, SONG & SPIRIT".
Please share this info with your friends, family, church and co-workers.
Thank you in advance for your support!
www.soundsofblackness.com

HEALING PLACES 2:

Jackson County continues to be an awfully nice place to have grown up in if you find yourseful in need of support.

Ahoy high school classmates - Dennis Fleetwood is alive and well, living in Ohio and called to be supportive but pointed out to me that I am not so very good at accepting support without trying to reciprocate. While he is correct, I did point out to him that by working hard at accepting all support offered I had gotten much better about that than I used to be... (note to self: maybe you should erase the reciprocating message about how to support the latest CD from Sounds of Blackness above. Or maybe you can just wait till Monday to work on your next set of improvements in that direction).

I continue to get messages from others in Jackson county, some recovering from their own set of medical work, offering support and if I need it, rides to chemo. Thanks guys, but at this point all but about 3 dates have already been chosen by local volunteers and there are additional local folks who have asked me to call if I need help. So while I really apprecaite your support and you cannot imagin how good it has felt to know you are in my corner when needed, for now I think it will not be necessary for anyone to drive 250 miles to Atlanta just to turn around and drive me back to Gainesville. But I love you all for offering.

And I continue to work my way through the items in the gift box from Sylva First Baptist that arrived with Ginny in time for my first chemo and to appreciate you all whenever I use any one of them.


HEALING PLACES 3:

To all who, anticipating this point in the chemo, sent those gifts of bubble bath, moisturinzing soaps, floating rubber duckies, skin rub, and so on - know that I am enjoying them all. When the TV gets old and the dizzy walking from room to room makes it too tiring to attempt anything else I fill the tub with hot water and just soak to my heart's content. Or at least until it becomes chilly and uncomfortable.

HEALING PLACES 4:

In addition to the phone call from Nathan and the Virginia Walkers (sorry Nathan, I heard it ringing but thought it was background noise in the cop show I was watching on TV until I found your voice mail Saturday morning), I am anticipating visits in the coming weeks from cousins from Arkansas and my sister from eastern Carolina. WARNING: the house may be a bit of a mess since I am not succeeding in keeping up with the laundry and dishes just now but...your company and support will be welcome.

HEALING PLACES 5:
Balsam would make a really excellent watching TV pillow if he did not (1) reek so supremely of hound dog and (2) have an unfortunately habit of sticking his face between your eyes and the TV while doing slurpy slobbery things to your neck now and then.

Things I have neglected and things I need now...

It occurs to me that since I have been focusing on the hand knit hats, which have been arriving like rainfall, I have neglected some other things - such as

(1) the big purple Ginny-took-me-to-first-chemo-then-shopping hat;

(2) the little discrete grey Jackie-who-works-with-me-thinks-this-should-transfer-to-her-closet-when-I-have-hair-again hat;

(3) the Missy/Melissa-I-survived-chemo-and-so-will-you-this-is-my-good-luck Blue Macalester hat; and others.

Well if you look back at the early post with hats and scarfs on the folding doors photo you can pick most of these out. Others will be posted when I master the energy to make photos again.

And if you look carefully in the background of the photos already on board - you can identify the Elaine=and-Cami-thought-I-might-get-cold memorial gift comfort - which doesn't smell quite as nice as it did when Elaine dropped it off since Balsam, for reasons that escape me but probably are very clear to him, seems to find mouthing it and leaveing hound dog slobber behind a very desirable way to intermittently spend his time. Plott hounds are famous for their cold tracking noses - maybe it is a sign that he periodically gets lonely for Elaine. (really, he is not her type but I am not breaking that news to the poor little mountain dog.)

Meanwhile - people have been very generous about volunteering for driving - so maybe it is time to update my much smaller "what I need now" list:

Now what I need is a volunteer driver to drive me to and from Chemo on:

Monday February 22 - (short day - should be back to Atlanta by Noon)

Monday March 22 - long day - likely won't be back to Atlanta till late afternoon

Monday March 29 - short day

Monday April 5 - short day AND LAST DAY

All this assumes that there are no delays due to low white counts or whatever. And one of these days will drop off shortly as soon as I have time to check with my neighbor about exactly which day he wants to visit his buddies at Lake Lanier.

Meanwhile, I am sharing another photo of sunset at Water Rock Knob. Sunrise is just as nice, but not being a morning person I made it there less often and never with camera in hand.

Followed by several photos from a previous visit of the USNS COMFORT to Haiti in 2007 before the quake including the silloute of the Cathedral (now collapsed) from the approaching (or exiting) Port a Prince boat, the shoreline, the intact University Hospital, the USNS COMFORT anchored off shore at evening, and a sunset in happier times.

More hats

So what arrived in the mail today (and a couple of days ago) but MORE HATS from Nancy B in NY and Gina Mac '74 in Seattle.

I am so set with hand knit hats that once I finally have hair again, I will be able to equip 75% of the bald chemo patients in Atlanta!!!

This brings the combined total to 1 primary-started-it-all from Rose Chen in MD;

1 hand-knit-but-not-by-her from Kathy in Minneapolis (thank goodness, we would have to re-align our whole concept our old friends if Kathy or Val took up knitting! they are so much more the hand-crafting-an-off-the-grid-cabin-in-the-Far-North types);

2 hand knit by ?Gina Mac'74 or some other hand in Seattle:

And 4 hand knit by Nancy the artist in NY.

By the way, I threw in a photo of Balsam cuddling up with the used-to-be-white-and-have-eyes-a-nose-and-stuffing seal that he fell in love with and adopted from Gina Mac '74 in Seattle's first CARE package. SEe if you can figure out which one it is. (HINT - photo contains a big black dog and a little flat filthy greyish thing).

Sleeps with Hats and Dogs...or tries to anyway

Louisa attempts to sleep with dogs who, lacking both prehensile thumbs and, prehaps not unrealtedly, any finely tuned appreciation for the value of hand knit hats mostly attempt to eat them. But occasional switch to attempting to capture their favorite delicacy - Louisa snot (or occasionally, Louisa ear wax).

Note to Louisa: maybe the family portrait was not your best idea.

Note to Nancy, Rose and Kathy: thanks for the lovely Hand Knit Hat Collection which, now that the photo session is completely and forever over, will remain firmly outside the reach of the dogs

Note to Clara: maybe "Wrestles with Dogs" would be a better theme shirt for 2010. but it does give you a whole new appreciation for that guy who manages to publish all those photos of his Wimeranger dogs wearing all sorts of absurd costumes doesn't it?

It is raining Hats and Dogs...

Arrive today by mail - special hand knit hats mailed by Nancy B from Pound Ridge NY on January 5 and given up for lost!

And ironically, inexplicable, and possibly significantly ALSO arrived today by mail - special hand knit hat mailed Jan 16 by Kathy Ogle from Bloomington, Minnesota. No, neither Kathy or Val have taken up knitting - this was came from a selection knit by volunteers for patients in Kathy's oncology clinc.

the Rose Chen hand knit hat collection expands and is rechristened into the Hand Knit Hat collection.

this calls for a special photo featuring the pink Christmas present "Sleeps with Dogs" shirt from Clara Chen plus me and the dogs posing as a family and each wearing one of the Hand Knit Hat collection. Hmmm. Getting that photo probably requires more energy than I have tonight. Plus a volunteer photographer and possibly 3 or 4 people to wrestle the dogs into submission. that posting will have to wait for another night.

But I did sucessfully complete the first Day of the Third cycle of 6 today, thanks to wonderful volunteer driver Leonora Weaver, and even made it back to work to send out the special report before coming home. I take that as a good sign. That and all the gifts in the mail.

One third done and counting ...

Since I met with my doc for a check up today marking the official send of the second cycle, and thereby the one third done point in the chemo - it seems a good time to write an update. So how is it going?

(1) Chemo -

Going well. Main side effects are fatigue which has been quite tolerable so far, and a frequently bloody nose. That awful metallic/evergreen/kerosene taste has not been noticable this cycle and the rate at which my hair is falling out appears to have diminished - although it is hard to be sure since it is not nearly as noticable now that the hairs are a mere millimeter or so long.

That is what I told the doc. Here is what he told me.

The really bad fatigue tends to set in during cycles 4 and 5 (starts February 8) - so you have not really experiened fatigue yet. good you are trying to push yourself. Keep it up.
That awful taste comes and goes but by the end of the chemo most people complain that nothing tastes good. Hang in there.
The bloody nose is party due to the cold dry weather and much attributable to the avastin (the experimental drug).
The remaining hairs are probably in the dormant cycle. When they move back into the active growth cycle they, too, will all fall out.

So actually I am not being heroic or even doing a great job. I just have not hit the hard part yet. Oh well. I can always pretend.

(2) Other developments -

Went to the post office today where they assured me that indeed, the hand knit caps that Nancy B mailed from New York on Jan 4 should have arrived by now. I am not giving up hope that they are simply delayed in transit, but...it looks possibly grim.

Hosted West Texas Chapmans sister in law Debbie and niece Louisa M last weekend when they came out so Louisa could participate in auditions to become a professional ballerina. We are confident she was brilliant. Apparently some of her fellow auditioners recognized her as the poster girl for the ballet summer intensive she attended last summer - posters were hanging on the wall.

Nephew Judson spent Sat afternoon helping me hang pictures and things (well actually I was not doing a lot of help outside of just pointing out where to hang them) and stayed for dinner with his Texas cousins. The place looks better now but I seem to have more things that need to be hung than I have wall space. Still working on how to solve that problem.

Arkansas Walker cousins are now planning a trip out to visit and drive me to chem on Feb 15. That should be about the time my doc predicts I will learn what real fatigue is all about, but they assure me they are prepared to cope with it.

Balsam has adopted the little stuffed and formerly white seal that came in the CARE package from Gina in Seattle. He has carried it continually for a couple of weeks now and seems very fond of his baby. Although he does have an occasional tendency to pick it up by the back of the neck and shake it vigorously and repeatedly. Which may explain why on the multiple occasions that Jake has captured a possum that appeared to be dead if I made him put it down and come in, and checked back in an hour the 'dead" possum would ahve gotten up and run away. While on the only occasion that Balsam managed to capture a possum that, based on prior Jake experience I assumed to be playing dead, and I made him put it down and come inside - the next morning it was still lying on the ground doing a very convincing job of playing dead...

the little stuffed seal, in addition to changing from white to something closer to brown, has progressively lost a nose, an eye, and much of its stuffing. Balsam still seems devoted which perhaps proves that indeed, even for canines, love is blind and beauty is in the eye of the beholder.

that's about all the news that is fit to print. Thanks again for all your support.

33% DONE - and newest list of assistance needs and another photo of sunset at Water Rock Knob

First - last Monday was the third week of cycle 2 - so I have officially finished 2 of 6 chemo cycles and am 33% DONE!

AS of now I have volunteer drivers for every Monday/chemo day through Feb 1 plus Feb 15 and March 15.

I still need volunteer drivers for the following Mondays:
Monday Feb 8 - day 1 of cycle 4, so will be a longer trip taking most of the day
Monday feb 22 - day 3 of cycle 4 - short day shoudl be back by noon
Monday March 1 - Day 1 of Cycle 5 - long trip taking most of day
Monday March 8 - short day
Monday march 22 Day 1 of cycle 6 - long trip taking most of the day
Monday March 19 - short day
Monday April 5 - short day

Yes, the Artic Blast chills the country...

Forcing the dogs to spend long days confined inside while the outside temperature hover in the teens and twenties (for you Midwesterners thinking "so what?" this is the cultural equivalent of double digits below and usually does not stick around here for more than a day or 2 at a time), their outside water bowls remain frozen for days on end, and snow is predicted for the end of the week.

But Louisa continues to live the life of Riley - securely protected in her warm home, cuddling with the dogs in the evening and sleeping very soundly wrapped in all sorts of warm protection. As evidenced by this photos of Louisa ready for bed in the snappy new Christmasy PJs accessorized with that fancy red/gold bow and the snazzy Christmas bed socks - all thanks to items tucked into the pre-chemo care package by the chemo-nurse-Emily, Josh and Walker Buchannan family from Sylva. (And topped off by the hand knit by Rose Chen cap previously exhibited on this blog).

What you can't see is that before I wrapped myself in all this warm new sleeping gear, I had a wonderful mosituring bath followed by smearing all that moisturing stuff all over to protect against dry skin, again thanks to the lovely products tucked into the Sylva First Baptist care package by multiple people.

Thanks to you all. And to Ginny for ferrying them along. Real thank you notes are in the mail - or at least will be as soon as I finish just a couple more.

I am also spending time munching on the various edible goodies included but decided not to post a photo of that.

Sunset at Water Rock Knob

What I need assistance with now

I need someone to drive me to and from chemo on the following dates:

Monday Jan 25 - short day - Cycle 3 Day 8

Monday Feb 8 - long day - Cycle 4 Day 1
Monday Feb 15 - short day - Cycle 4 Day 8
Monday Feb22 - short day - Cycle 4 Day 15

Monday March 1 - long day - Cycle 5 Day 1
Monday March 8 - short day - Cycle 5 Day 8
Monday March 15 - short day - Cycle 5 Day 15

Monday March 22 - long day - Cycle 6 Day1
Monday March 29 - short day - Cycle 6 Day 8
Monday April 5 - short day - Cycle 6 Day 15

Time from my front door to Chemo office is approximately 40 minutes including time for me to treat for breakfast at McDonalds en route. Time for return trip is similar except treating for lunch requires stopping and takes longer.

Duration for chemo is usually about 2 hours on short days (back around noon) but 3-4 hours on long days (back mid-afternoon or such).

i very much appreciate everyone who has volunteered. I would much like to schedule these days in advance if possible even if it results in needing to cancel or change if things come up.

So far my white blood cell counts are holding up very well and there are no other indicators suggesting need for delay.

email to volunteer - louisae@comcast.net or LEC3@cdc.gov

Thanks.