Medical Adventures of the Extended Chapman Family

(1) Brother-in-law Joe is expected to return home tomorrow from Duke hospital where he had resided for the past couple of weeks, recieving a new pacemaker that hopefully will prevent exciting cardic events like the one that precipitated this hospitalization and the one several years ago at Thanksgiving in Charlottesville, VA.

(2) Last night Jake began to experience falling spells. Several for unclear reasons that seemed to be due to his hind legs collapsing. This morning the dogs and i visited the vet, where both dogs received baths and returned home smelling better. In between baths Jake consulted a vet who thinks his difficulty staying on his feet is probably due to arthritis in his right hip and possibly also a disk problem in his back. He returned home with new pain medicine that is stronger than before and is now sleeping very peacefully, and apparently without discomfort.

(3) Louisa got a phone call in the middle of the vet visit telling her to report to Northside hospital for a type and cross (laboratory testing necessary to match a patient to donated blood to enable a transfusion). Leaving Jake and Balsam in the good hands of the vets and groomers at Vernon Wood Animal Clinic, I did. When I returned the doggie x-rays were finished, the medication perscribed, the baths finished. Balsam, true to form, howled continually whenever he could not see Jake. Fortunately I was mostly at Northside and missed all the fine sound effects.

Tomorrow at 10:30 I return to Northside to actually receive the transfusions. Meanwhile i type despite the multiple little gauze pads taped to my hands bilaterally. Having a port does not always mean people use it for blood drawing, and my veins are not so hot.

Well, tomorrow my hemoglobin (the part of the red blood cell that carries oxygen and therefore supplies energy to all cells in your body) will hopefully rise above the 7.7 it was yesterday (about half what it is supposed to be) and based on past experience, I will emerge a new woman with renewed energy. which hopefully will last long enought to allow me to catch up on all my paperwork, filing and bill paying.

Did I mention that I am ready for this to be done? But really I should not complain. Things have gone very well to date and Monday I start the 5th and next to last cycle.

(4) the numbing and tingling in the tips of my fingers and toes suggests that I am beginning to experience some of the peripheral neuropathy (irritation of the nerves at the ends of my limbs) that sometimes accompanies this form of chemotherapy. Usually this goes away when chemo is over. Meanwhile my doc says taking Vitamins B12 and B6 may help.

Did I mention that it is more fun to be a medical provider than to be a medical care recipient? But overall, no complaints. After the visit from the extended Ark Walker clan 2 weekends ago I now have a shorter visit from one sole member of the Ark Walker clan (cousin Robert's son Nathan) who has been wonderful about hauling out my trash, lifting Jake in and out of the car, bringing me Chinese take out food and ice water and other such things. Can't complain about getting waited on hand and foot now can I?

Good News!

After having my doctor's evaluation today that is required before starting cycle 5, the next to the last cycle of standard chemo, I am officially two/thirds of the way finished with the standard chemo portion of this experience. I start cycle 5 on Monday and then have only 6 weeks of chemo left to go!

Excellent, I am ready for this to be done and for the fatigue to begin to receede. It might help if it would warm up outside. The temperatures keep hovering in the 20s. (OK you folks in Minnesota. I heard that snicker. All I can say is in this neck of the woods that is really really really cold. Just ask my dogs.)

But here is the really good news. Today one of you forwarded to me 2 press releases from Roche and Genetech. Both reported that the results of a Gynecological Oncology Group trial prior to my own (GOG-218) show a definite survival advantage to receiving Avastin! Avastin is the experimental drug that I enrolled in my own study to receive, and the reason I am driving to Gainesville, GA for treatment instead of more conveniently recieving it right here in Atlanta.

The trial GOG-218 divided women into 3 groups. All three groups got standard chemotherapy using the same 2 drugs I am getting (Taxol, my flower-power drug and carboplatin or a similar drug). In addition the first group got a placebo (fake drug) during and for about a year afterwards. The second group got Avastin with the chemo therapy, then got the placebo fake drug for the year afterward. And the third group got Avastin during chemo and for the year afterwards. The third group had a better outcome (defined as longer progression-free survival - survival without evidence of progresion of the cancer).

This is very good news for me. My own trial divids women into 3 groups, each of whom get a different variation on standard chemotherapy, but all of which get Avastin wiht the chemo and for a year afterward.

YEAH! VAlidation that it was worthwhile to drive to Gainesville for chemo and to enter this clinical trial.

The dogs are very happy. So am I.

This is a press release from the company that sells the drug, but the scientific data is scheduled to be presented during the annual meeting of the Association of Clinical Oncology in June, which is where all the professional oncologists go to catch up on the latest data.

WEekly update

My friend Caren and my Aunt Rita have both told me that when I wait too long between blog updates it worries people who follow that something is wrong and so I should update more often.

There are 2 problems with this.

First, when there are long delays between blog updates it probably does mean that I am really feeling the chemo-induced fatigue and having to carefully marshall energy to attend to the most essential tasks. At the moment those include getting through the mail that has piled up for weeks and paying my bills and preping my taxes. Something i keep thinking about but not acting on.

Secondly, as I cut back to 2 days of work a week and curtail trips out of the house to limit exposure to infection, my life is not overly full of things I think you might all just be panting to hear about. The big excitment today was either driving through the drive in of Einstein Bagles to pick up breakfast with out getting exposed to people sitting around in side possibly harbering infections, or maybe it was ordering in the PizzaHut pizza for lunch. With Dr. Pepper. Hm, Hm, good!

or possibly it will be something that comes up on my further explorations of cable television. I just discovered a whole streak of travel shows that make me eager to finish my chemo and go somewhere on vacation...

The highlight of yesterday was finishing off the fresh cantalope and blueberries with cream that the Arkansas Walkers left behind after their visit.

the weather is finally warming up so the dogs can spend their days in the yard instead of the house - they like this and so do I. Makes it easier to eat pizza without inappropriately intruding cold noses.

The highlight of tomorrow will be paying bills and working on tax prep. I put it off from today on the theory that I will have more energy tomorrow...

If any of this just sounds like excitment you can't by pass- come on over and join right in. Meanwhile, I am spending most of my time watching TV or reading in the recliner chair. One disadvantage of the transfusion - pre-transfusion I was too tired to feel confined. Although it was slightly annoying that I kept dozing off and had to watch the same TIVOed shows over and over again to follow the plot. Now post transfusion I am largely too tired to do anything productive, but feel good enough to be annoyed by it.

For those of you who know Gina Mac '74 in Seattle but don't follow her blog - latest tests show a 25% reduction in tumor mass all over! This good news just after she returned from a trip to Hawaii! So congratulations are in order these days for Gina.

Gina Mac'74 from Seattle also used her blog to bring to my attention a video produced by the Macalester College President Brian Rosenberg for President's Day. It was hysterical and probably can be found on the Mac website (or at least the Macalseter College Facebook website) for the interested. The Mac Alumni event in Atlanta occured the night before my transfusion when unfortunately I was too exhausted to attend, but fortunatly for them the day before the big Geogia snow storm which shuts this city down in ways no one from Minnesota could believe or understand.

So doing well for now. Thanks again for your support.

What a difference a day makes!

For those of you who think perhaps I was overdoing it on a hemoglobin of 7 let me clarify - it was the dogs, not me, who were romping in the snow before I departed for the hospital and my transfusion last Friday.

And I was not dizzy walking to the car and once I was sitting behind the wheel was perfectly fine. It does not take so much energy or effort to drive an automatic car through a drive in window and pick up a sandwhich on the way to the hospital in clear weather. So really, I do not think I was a danger to myself or others driving in.

It is true that I seemed to go down hill over the course of the afternoon and probably was having my blood counts continue to drop, and that once I had to leave the car behind in the parking lot the demands on my underpowered oxygen carrying capacity did increase. And probably I should have anticipated this. But in my defense before they decided to keep me overnight and transfuse me I was considering taking a cab home and to return in the morning. and also thinking that since I have been getting weekly steroids IV every Monday since Dec 7 with my chemo, maybe when I see Dr. Green next thursday I should inquire whether dropping BPs on Thursdays and Friday are entirely attributable to red cells or if I needed to worry about adrenal insufficiency developing in response to the chronic steroid use...

Although since I had gotten a speeding ticket on the way to have my blood checked in Gainesville on Thurdays it occurs to me that showing up in court and claiming diminished capacity with my bald head might be a decent defense. All I would have to abandon is a bit of pride and well maybe integrity. The truth is who knew that the speed limit where I routinely enter the I-85 is 55 and does not rise to 65 until I pass I-285? There are speed limit signs, but honestly only 1 between the N Druid Hills entry and I-285 and usually I am too busy tracking traffic to search for them. Plus since I have been repeatedly rear ended during my life in Atlanta but only once rear ended anyone else, I am leery of driving 55 when the prevailing speed of traffic is about 70.

None of these sound like very valid arguments so I guess I will just send the payment in. And hope it does not result in remarkable rises in my car insurance rates. And try to stick to the speed limit on future trips while praying it does not result in me creating a hazard on the highway and getting rear ended AGAIN. Sigh.

So now that for the first time in several weeks my hemoglobin is over 9 I am reveling in the joy of having oxygen carrying capacity. Don't tell her but when my cousin Ruth left me alone to search for tires I snuck into the kitchen and unloaded the dishwasher and folded laundry and tonight while she and the rest of the visiting Arkansas Walker cousins are out cavorting with her daughter Dawn and family I sorted my mail. (the chemo nurse forbade me to cavort with children between 5 and 11 even if they appeared to be perfectly healthy until my white count comes up since they did not transfuse infection fighting cells). All without getting short of breath or dizzy.

It is true. You don't appreciate what you have until something takes it away. then you think 'My it was really nice all those years to do whatever I wanted without having to maintain awareness of the nearest thing to sit on if I suddenly needed to and without taking frequent rest stops". Youth. Wasted on the young. And all that.

Well - thanks to the miracles of modern transfusion medicine I am back in the saddle. And wondering how long it will last. Cousin Robert Walker (not the one who stepped off the first ship in Massachusettes Bay in the 1600s but the one who drove from Arkansas this weekend) says 20 - 90 days depending on how old the individual red blood cells were when they got transfused. Keeping my fingers crossed that this will last for most, maybe all, of the rest of my chemo.

Only 7 more weeks of chemo to go.

AND THANKS FOR ALL YOUR SUPPORT - especially at the moment Michele, Mehran, and Judson who loaded and unloaded dishwashers, folded and put away laundry, delivered dog food, took out trash, and performed other menial chores cheerfully while I was having difficulty managing it. (And who hovered around waiting to see if I needed pick up service from Northside despite my insistance that they should go home before the snow started).

And to my Ark Cousins who did all manner of things above and beyond providing company, transport to chemo, meals, cleaning my house, hanging things up and bringing back memories of shared Thanksgivings, Christmases, Vacation Bible Schools, making mud pies, daring each other to eat them, Summer evenings chasing lightening flies and maybe waltzing in the mist from the mosquitoe spraying machines that tracked down every road in town periodically despite being strictly forbidden to come close to them by our parents. But more about that in the next blog addition.

And yes Caren, when there are long gaps between postings it does tend to imply that I am using up all available energy on other things. The longer the gap, the shorter the available energy. You know me well.

Although it is also true that having outlined the chemotherapuetic agents and other basis, my life is not always extremely newsworthy these days. Some what short on exciting adventures to report. For example:

Tonight I spend some available energy watching Real HouseWifes of New York, or maybe it was New Jersey. Never haveing had cable until I got my updated electronic entertainment gear post-surgery (thanks to advice and assistance from Dennis, Mehran, Michele and Judson) I am new to the joys of cable television. Who knew people really lived this way - miles removed from my world of people wearing tacky uniforms (sorry PHS, but in your heart you know it is true) instead of $16,000 purses and spending their days worrying about whether they can get clean water to people with gangrene in Haiti and get at risk people with asthma to take their flu vaccine and trying to figure out whether anyone they know can find someone who wants to donate a flight to get Ruth's volunteer orthopedic surgery team to Haiti on March 20 - sometimes for enough hours to smell not so great by the time they go home. And often failing to look so great when they show up for work in the morning. Maybe I missed the boat in chosing my career and location.

Hmmm, have to think about that. Cable also has shows about people who hoard. ("Michele, did you know there are television shows about people who hoard?" "Uh, well, actually YES Louisa, I knew. That's right, you never sprung for cable before, did you?") That inspired me to make more of an effort to clean out those boxes of papers still stacked in the spare bedroom. Maybe Real Housewives should inspire me to consider spending more on my wardrobe - but not $16,000 on one hand bag while the American Red Cross is begging for donations for Haiti and the homeless man who solicits odd jobs in the neighborhood is seeking $20 worth of work in the yard so he can sleep under a roof on this snowy night in Georgia.

Ok resolved - I will read Vogue more often and maybe consider moving that ratty grey sweather with all the holes that match Balsam's teeth into the rag bag, and might even give up some of the T shirts with permenent stains and ragged sleeves no matter how high the sentimental value. And dump any mascara in my collection that exceeds the 3 month limit. while is all of it. Oh and try to lose that extra 20 pounds AFTER I finish chemo when I can afford to consider calories and other strength building things unnecessary luxuries.

that is about as far as I can take it. Well, maybe I could pay a tailor to make some of my clothes fit a bit better. And iron now and then. Perhaps my sister can help with these efforts when she visits early in March. After all, it was she who clued me in that I was the only fifth grader who routinely buttoned every button on all my blouses. Most people left the first 1 - 3 open. (I paid attention at school the next day. She was right. Who knew? Why would they waste resource putting all those buttons on shirts if you were not intended to use them? It defied reason.) MAybe this example, brought up in court, would add creedence to an argument that I was honestly unaware that the speed limit did not rise to 65 for an additional several miles since I never noticed the one speed limit sign that could have cued me in...Oh forgot, I decided just to pay that ticket.

JEepers, cable TV really is educational.

They are soliciting recruits for upcoming Survivor episodes. Shall we get a team up and volunteer? I'll be available anytime after June...

Weather, transfusions, and dogs

The photo of my back yard was made at about 3 PM today (Saturday February 13) well after the sun had come out, the temperature had risen to above 32, and the snow had progressively melted. For those of you in the mid-west you may be having a hard time figuring out how it merits publications. But in Georgia snow like this happens rarely - never stays overnight, and mid-February is about the time you start looking for daffadils in the yard. Not the yellow flowers usually, but the green sprouts coming up and heralding that the yellow flowers will follow within a couple of weeks. I thought I saw several last week around my mail box.

Friday I was called to come in to NOrthside hospital in Atlanta for a transfusion due to a hemoglobin of just over 7. Hemoglobin is the part of the red blood cell that carries oxygen, and oxygen is what fuels about every thing the body does. A normal hemoglobin is about twice 7, and the hemoglobin that confined me to a recliner chair for several days last week was over 8.

So after a brief romp in the yard I confined the dogs to the house and took off for Northside to get blood drawn for a type and cross (the lab work needed to be able to set up a transfusion and make sure the transfused blood matches mine). The expectation was that I would return at 9 this morning for the actual transfusion as an outpatient. Luckily i stopped for a sandwhich on the way, since that was the last meal I would have until breakfast this morning.

I got to Northside and staggered around for a long time trying to find the right office. Atlanta hospitals seems to scorn those colored lines on the floor and large explicit maps and signs that make it easier for patients in less than stellar shape to get directly to the pertinent office in hospitals in other parts of the country. (Not just Northsides, Emory is really bad about this but has lovely marble in the lobby to make up for it). So I spend some time and energy walking from place to place, sitting to rest and catch my breath on every bench I passed. Eventually I found the right place. IT was taking an awful lot of will power to keep motoring myself about and when the nurses in the infusion center recognized that I was getting very short of breath and frequently lightheaded with exertion, they took my blood pressure and discovered a systolic of 89. (systolic is the high numbers - normally the low number is about 89). Which explains why I was having such a hard time.

The decision was made that I should not return home without the transfusion, but the only way to accomplish it was to admit me overnight. So instead of returning home I was sent in for a "23 hour" admission and transfused a couple of units of red blood cells. Sounds simple but the transfusions took a while, starting late and finisheing about 4 AM this morning. Meanwhile the weather was getting worse and worse, snow beginning to blow by the time I entered the hospital and the roads iced over by midnight. So instead of coming home when the transfusions finished I was held for discharge after the sun came out and made some progress on the roads.

Meanwhile the dogs were stuck alone inside the house for nearly 24 hours without release despite efforts to locate someone with a key to the house who could go over and let them out. My nice neighbor returned my call, for instance, but reminded me that while we had talked about trading keys we had never acted on it and anyway he was calling back from below the snow line in Florida...

Fortunately when I got home about noon today the dogs were champs! Despite being confined for nearly 24 hours without relief they had somehow managed to not soil the house. they were quite eager to whip out into the yard and showed no signs of wanting to return into the house for several hours, despite temperatures in the 20s, snow, and the absence of dog food on the outside today.

And I am much improved with my new hemoglobin that tops 9 for the first time in several weeks. Even managed a bit of grocery shopping on the way home (I figutred it was too late for the dogs so why rush? but I was wrong...) it if were not for the fact that I had not eaten since the sandwich the day before except for breakfast this morning before discharge and a few stary graham crackers and snacks, and the fact that I was up most of the night getting blood and having vital signs checked, i would be feeling much much better now. I am anyway. I can walk and not get dizzy or out of breath. Terrific.

And my dogs are champs.

So another new experience. My first, but I suspect not my last transfusion. Half way through and counting...

More than halfway done!

Last Monday I officially got the first 3 chemo treatment of cycle 4 - which means that I am more than half way done with the standard chemo part of the treatment.

Today I officially changed from 2 to 3 medical leave days a week and arranged to work from home on 1 of the 2 days I will continue to work. Felt a bit like a defeat, but I guess getting half way through before i had to cut back was pretty good.

just under 3 cycles and 8.5 weeks left.

Did I mention?

the supportive emails I have received from Haiti from colleagues I worked with in the past (post-Katrina or on the COMFORT). You would think they would be full up with more acute disasters to support. But what a statement about the quality of the folks I am priviledged to work with. Thanks guys. And in response I post a few pre-earthquake photos of Port-au-Prince, Haiti from September 2007.

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.