Merry Christmas to all and to all a good night...

No, I did not drop you off of my annual Christmas letter list. I just have not gotten around to sending one since 2008. But I will get one out this year, I promise. Maybe not for another month or so but...

So the dogs and I drove up to Sylva, NC on Christmas Eve where I had rented a cute little house in Dillsboro (kind of a Sylva suburb) with just enough room for me and the dogs for Christmas Eve and Christmas Day. Despite grim weather predictions, the drive up was lovely. We arrived in time to settle the dogs and make it to the First Baptist Candle and Carol service (me that is, I left the dogs in Dillsboro) and afterward to the usual open house at the home of parents of high school friends where their extended family (and my extended high school friendship circle) gather on Christmas eve. And after that to the next extended family gathering, this one a bit more compact and the children and grandchildren of another high school friend. It was all lovely. Significantly, First Baptist is between pastors at present and as a result the design of the Candles and Carols service was up to the congregation. They decided to revert back to the original design - just scriptures interspersed with carols, lite by candles, with a pleas for funds to support service to local residents in need and a choir special or two. It was lovely. And short. which we all appreciated.

the following day 3 to 12 inches of snow were predicted, and by the time I was up and stirring at 8ish there was already at least an inch on the ground. I decided to make a calculated gamble that I could load up the car and get over Cowee mountain before the snow froze and thereby get back to Atlanta on Christmas Day. The alternative seemed to be maximizing the value of my rent by staying through Christmas Day as originally planned, but risking letting the roads freeze and being unable to return to Atlanta for several days. While I greatly appreciate several high school friends who offered me a spare bedroom for my own use, or a basement for the temporary dwelling of my dogs if my stay was forced to exceed the duration of my rental reservation - the fact that my next Chemotherapy (Avastin) appointment was on Monday Dec 26 made it highly desirable to return to Atlanta on schedule.

So i packed up the car while the snow continued to fall thickly all around. By the time I had the cars loaded and added myself and the dogs and started out, there were likely an additional couple of inches of snow on the ground. And it continued to pile up as I drove out of town and headed up the mountain.

The drive was beautiful. The snow was falling so thickly that distant vision was limited. Fortunately all the way over Cowee mountain the traffic was very limited, so it was easy to keep large distances between cars. But I had no trouble - no slipping or sliding. Anyone who has traveled over Cowee mountain and admired the view from the large drop offs will recognize this as an excellent thing. My usual traveling speed of 55 - 70 MPH was reduced to something more like 20 - 35 MPH all the way through North Carolina and the first part of North Georgia. Around Tococca, Ga the snow turned to rain, and shortly thereafter the roads cleared and travel returned to normal speeds so that I arrived home in Atlanta by early afternoon.

Temperatures hovered around freezing the whole time, however, and within a couple of hours of the time the dogs and I re-established ourselves in the house in Atlanta snow began to fall here as well. By Sunday morning the roads were iced in, the yard was covered with snow and I did not bother to try to leave the house until Monday when it was time to depart for chemotherapy. Fortunately the roads had cleared and the snow and ice in the yard had diminished.

And today the snow and ice in the yard is largely diminished - almost gone in fact.

Now I know that about now those of you in Minnesota and Boston and New York and Canada and other points north are thinking "What is the big deal?" But trust me, down here in Dixieland a white Christmas is a rather rare commodity. This was the first white Christmas in the mountains in, if I remember the news correctly, several decades, maybe even 50 years. And the first white Christmas in Atlanta since sometime before the turn of the century.

It was all very very beautiful, and we (Jake, Balsam and me) enjoyed very much our low key white southern Christmas. We spend a lot of time eating tomato soup full of crumbled corn bread, drinking cinnamon flavored hot apple cider, and thinking happy thoughts. I spent a good bit of time reading the load of Christmas cards and letters and often giggling over various reports from you and your families. Thanks for keeping me informed.

The snow and ice are largely gone now, but enough remains to make the trip up and down my back stairs a bit treacherous. Fortunately I make it rarely but the dogs make that trip multiple times a day. But it is lovely. Sorry I did not catch a photo for you.

Another avastin dose down, 3.5 months to go...

I had another Avastin dose today. This will continue every 3 weeks through March 21. The good news is that my blood pressure was excellent today on my current medication - with a systolic under 130. High blood pressure is a frequent and problmatic side effect of Avastin, and I have had to go on medication for it, but appear to be doing fine on my current medicine.

My hair continues to grow but (maybe I imagin it) much slower than before chemo. I am not complaining. I am so happy to have any hair at all again!

Jake, my 14.5 year old pound mutt with the tumors in his live and lungs, continues to do surprisingly well. He sleeps a lot, but then he is more than 2.5 years beyond his predicted life expectancy so... He hangs out closer to me, and seems a bit slower, and continues to slowly get skinnier - but otherwise he just keeps trooping along, sweet as ever and apparently happy. Sorry to leave you hanging for so long. I am renting a tourist house in Sylva on Christmas so I can take the dogs with me instead of boarding them, but otherwise they, and I - we are all doing well.

I am taking a lot of personal time off last month and this one. BEtween the time off work and the increased energy I am finally makeing real progress in catching up on the mail, filing, paperwork, and just plain stuff that piled up around the house over the course of my chemo. Hopefully by the new year the house will again feel more like a home than a ware house.

Otherwise no real news to report. Hope all your holidays are happy and healthy.

I am doing fine but the dogs are having problems

Had my most recent doctor appt today and all looks well. I will have my next Avastin treatment on Monday. the original schedule was delayed a week because I had to give a lecture out of town last Monday.

My first 3 major professional deadlines since chemo all came in a bunch over the last 3 weeks and I managed to meet them all. Although it required working over time and some on weekends, but even that was good since it provided proof that I can do that again. But hopefully not too often.

Now for the bad news. The dogs went in for their vaccine updates and, for Jake, his senior dog exam which usually consists just of lab tests. This time his liver enzymes came back very abnormal so he went further for ultrasound examination of his liver and lungs. Bottom line - multiple tumors in his liver and at least one large one in his lung. Not good. He is also getting skinnier every week and looking very boney now.

I decided against surgery or chemo. It would not be curable. He is already nearly 2 and a half years beyond his predicted life expectancy. I can't see putting him through any of that. So we are all making an extra effort to make Jake's life as good as possible for the remaining time, which based on the rate at which he is losing weight will not exceed the winter. Sad but inevitable. He is a very sweet dog. And he has had a very good life for a pound dog.

Update - avastin, progress and HAIR

Yesterday I had my most recent Avastin treatment. Things went smoothly and the next one will be 4 weeks from now instead of 3 weeks. I had to delay it a week because of a professional committment. Which tells you I am back at work full time and slowly increasing the work load and once again meeting deadlines and honoring committments.

Really, it is reminding me that the ZEN days of chemo when I had to let go of everything and just live in the moment, watching America's Next Top Model and Project Runway and not worrying about anything beyond whether I should invest in some 4 inch heels after I finished chemo were... well they had some aspects to recommend them.

Living in the moment is not that bad.

BIG NEWS - this coming Saturday Oct 16 I have my first appointment for a hair cut since my head was shaved last December. Not that there is really much to cut or that I really want it shorter, but at least it will be intentionally shaped a bit. And mostly, I just like the idea that I have enough hair again to think about cutting it! YEAH for small victories.

Sorry for being so slow to update

In response to a couple of complaints that I have not updated my blog, i apologize. I am slowly progressing week by week, but since that means I am now working a full 40 hour concentration week at work, I still tend to have limited energy on the weekend and spend a lot of time zoneing out to ensure adequate energy to make it fully through the work week.

I continue to do well. I still get Avastin every 3 weeks - last time yesterday - and will continue to do so through early 2011. And I get physical exams every 6 weeks - next one tomorrow - as well as laboratory testing every 6 weeks - next time in about 3 weeks. And periodic CT scans.

The results of every thing continue to be good - the labs are all normal, the CA-125 (a marker for ovarian cancer that was over 250 before my surgery) continues to be below the normal range. The CT and exams have been without any evidence of disease.

In other words, all things are good.

The recovery continues to be better week by week, but still slower than I would like. I am really working full time now - 40 hours a week of strong concentration - but have to titrate my efforts during off hours to be able to sustain that. My hair is back - not long enough for any intentional shaping, and a rather dull color halfway between grey and dishwater brown. But who can complain?

It has been a busy couple of weeks, with my Aunt Marian in and out of the hospital and needing more assistance from me, a niece moving in and another visiting for a weekend. But that has all been good and it is nice to learn that I can now gear up to extra stress when necessary.

Nothing too exciting to add - but in this world that is pretty good. Hope you all are well. Thanks again for your support.

New CT, Avastin next Monday

I had my most recent CT last Thursday - still no evidence of disease. And I have my next dose of Avastin on Monday.

This whole recovery process is slower than I had anticipated. I am better every week, but still running out of concentrating ability by Friday and having to carefully titrate my physical and mental energy investments. This is normal, I am told / was warned by my doc and chemo nurse and other women who have been through the same process. As long as I am having good outcomes I try not to complain.

Hard to believe that September is just around the corner. Where did the summer go? Since I don't tolerate heat very well these days, for once I am not sorry to see the summer go.

No evidence of residual disease & genetic testing results

My sister asked when I will know if I am in remission, and several of you have asked for updates.

At the moment, just over 9 months after surgery and more than 3 months after finishing the standard chemotherapy, I have no evidence of residual disease by physical exam, CT scan, or blood test (CA-125, which is not reliable for everyone but was elevated in me prior to surgery, less so but still high after surgery and before chemo, and has been in the normal and very low range very since). That is good news. That is, in fact, as good as it can get at this point.

I am still taking my investigational drug, Avastin, every 3 weeks through next February or so. I have developed high blood pressure as a result of the Avastin - a common and some times dangerous complication. But so far my blood pressure is adequately controlled with my medication, so I can continue the Avastin hopefully through the end of the intended course.

I had my most recent physical exam last Thursday (occur every 6 weeks), and will have the next set of lab tests (also occur every 6 weeks) and the next CT scan before this month is out. So all is good.

My energy, stamina and mental concentration continue to improve weekly, but are still not back to normal yet. The neuropathy (nerve damage from the chemotherapy that resulted in numbness, tingling and weakness in my feet and legs) has improved tremendously but still is not back to normal. It has improved enough for me to realize that I have a corn on one foot and probably a Morton's neuroma (a painful nerve condition) on the other that were not bothering me as long as my feet were numb - so recovery is a mixed blessing! I am not getting back to normal as fast as I would like, and it is harder and harder to tell, when I nap on a weekend day, whether that is evidence of wisely "listening to my body" or evidence of just being lazy. Good to be at a point where I have to worry about the difference again...

How long can I expect to continue to have no evidence of disease? Impossible to tell. And believe me, I have tried to find medical literature that will predict it for all sorts of reasons. Most recently my air conditioning went out this weekend and I have to decide between a short term investment of replacing an engine and condensor or a long term investment of replacing the whole system.

One study predicts an average of 10.4 months before recurrence among stage III and IV patients who got standard chemo, extended nearly a year longer by Avastin (I am stage III, but Stage III C, so close to stage IV). Another predicts an additional 2 years on average of disease free survival added by the investigational dosing I got on this investigational trial. Overall the statistics say 20-40% 5 year survival and about 10% 10 year. And if you get 10 years out without evidence of recurrent disease, I am not sure what that means with ovarian cancer, but I think you can think in terms of possibly a cure. Who knows. I have good reason to be optimistic that my experience may be predicted by the more optimistic statistics, but no way to know for sure.

I think I am going to replace the whole AC system and assume I am investing for the long run.

Since there have been at least 2 instances of ovarian cancer and another 2 of breast cancer among our extended family and I know some of you have been worrying about what it means for your own risk or that of your daughters, I decided to get tested for the BRCA1 and BRCA2 genes (the genes recognized to be associated with hereditary risk for ovarian and breast cancer). The good news is that my tests were entirely normal with no mutation detected. Does that absolutely garantee that there is no increased genetic risk for breast or ovarian cancer in our family? Well, no. There is always a possibility that there is a rare genetic risk not recognized by these tests (and not yet identified by science). But it makes it unlikely.

And it is also possible that others of you may have one of these mutations, even though I do not. If you really want to know your own risk, then you (or your mother) needs to be tested. But this suggests to me that there is likely no clear genetic risk that came through the Walker side of the family, which is the side shared by 3 of the 4 cases mentioned above. So my disease does not likely have ominous implications for anyone else.

On another note, last week 3 women asked me who cut my hair. It made me laugh. But grateful that I again have enough hair for people to actually mistake my style as a fashion choice, I optimistically dropped by my stylist to inquire how much longer it needs to get before he can do some intentional shaping. He told me to come back in another month or so...

I think I am going to keep it short. It feels great in this really hot weather and is awfully easy to manage.

I keep hearing I need to post an update

So here it is. My blood pressure seems to be doing well - dialystolics (lower number) usually below 90 which is good and systolics (high number) staying in reasonable ranges as long as I remember to take my medicine.

the medicine itself sometimes has the side effect of making people feel really tired and sometimes even inducing clinical depression. I don't recognize an impact, but it would be hard to tell since I am tired all the time these days anyway but anything feels better than I did.

Strength and endurance continues to improve by the week. I am not doing a detail (have been loaned to another office for a temporary project) that has me working and concentrating all day. I can tell I am more tired at the end of the day, but I am managing close to normal productivity although I still try to keep my day to 8 hours and no longer. So that is all good.

Some days I feel almost normal. And other days I feel like this is the hardest part, with certainty about the future lending a sense of urgency to the desire to recover fully and complete every thing that matters as efficiently as possible. When it all gets overwhelming I retreat to the recliner and nap. Things are usually better when I wake up.

And the neuropathy continues to retreat. Some days i am hardly aware of it until I pay attention to the fact that I continue to walk more like Frankenstein than a ballerina. Still balance is less of a problem and the feet are feeling closer to normal. All is good.

Louisa

New Wrinkle

Thursday I had my 6 week stop for laboratory testing. Elizabeth, my excellent chemo nurse, noted that my Blood pressure was running high and asked if that had been a problem before. I had taken my BP regularly at the beginning of my chemo but had neglected to do so in recent months.

I was feeling pretty lousy Thursday and returned home to nap in the recliner and watch TV. So I was pretty relaxed when I decided maybe I should haul out my BP kit and take my BP again. Wow - never knew it could be that high. Repeated it several times thinking maybe I was doing something wrong, but it just kept being high and sometimes getting higher, including the next morning when I took it before getting out of bed, and again before departing for work.

So to make a long story short - yesterday I got to start medicine for hypertension. This is not so unusual I think - as this is a known complication of the Avastin. I am relieved that I get to take medication for the BP and keep taking the Avastin.

And I feel much better today. Interesting, as I always tell patients that high blood pressure does not make you feel bad, but it raises your risk of stroke and heart attack so it is important to treat it. But now I am wondering if my feeling lously all over, then better after starting the meds means that, at least some times, hypertension DOES make you feel bad as well as raising your risk of stroke and heart attacks.

You learn a lot by being a patient. Maybe I should take my BP again and see if feeling better corresponds to a lower BP...

Always something new and exciting.

Update July 10,2010

Just returned from 9 days in Cherokee NC practicing medicine at the Cherokee Indian Hospital Urgent Care Clinic. Can't say I was really able to pull my weight, but at least I pretended to. For example, one day in clinic I saw 5 patients - the other doc saw 15 in the same time period. But the Cherokee folks were very supportive as usual, I enjoyed the switch and it gave me a good opportunity to compare my current progress against a real benchmark. In Atlanta and at CDC after spending the last 2 month of chemo in a recliner chair just about anything I do feels like progress. In Cherokee the bench mark was what did I usually do when there.

First - I could not pick up my "clinical bag", a large canvas sack that stores all the things I need (or may need) when practicing clinical medicine but do not (or rarely) need at CDC. When I finish a clinical stint I wash my white coat and repack the bag so it will be ready for the next time. It is usually packed with things I use often (like little paperback references) or continually (like my stethoscope) but also with things I use rarely or only theoretically need (like a large book on trauma medicine). IT is always too heavy, and I also think I should lighten it up. But this time I had to remove the things I knew I would not be using this time around before I could pick it up.

Second - I found the hike up from the lower parking lot - which always leaves me thinking I need to work out more - was totally exhausting. I managed it but had to stop and rest several times. After the first couple of days I parked in the closer patient parking or permenent staff parking areas and avoided the hike.

Third - just sitting on a stool without a back is more energy demanding than sitting in a chair with a back. I never really noticed this before, but i was very aware of it this time.

Fourth - On Monday it was a holiday so the clinic was closed and I was an add on in the ED. I bowed out and went home after only about a 6 hour day feeling really exhausted. And despite my plans to capture some of the folks who were very supportive to me during chemo and take them to lunch after church on Sunday, without an alarm I failed to wake up until 11:45. So no church, no capturing, no treating folks to lunch or even seeing them. Well - next time.

Fifth - in addition to the physical stamina limits, It was very clear to me that as I get more tired, my ability to think clearly and precisely and efficiently also declined.

Still all in all it went relatively well. I was delighted to be back in Cherokee and Sylva for a short while. I really enjoyed being in the mountains. And it was good to have a more solid comparison to assess where I stand in terms of come back. And the increased physical demands left me thinking it is probably time to begin intentional exercise again - although likely limited to the end of the week so I don't wear out when I still need to make it to work the next morning.

Update - June 29

Since my last update I have received my Avastin (yesterday Monday June 28) and had a follow up exam with my physician (a couple of weeks ago). the exam is still good with no evidence of recurrence, and the lab test CA-125 remains in the low normal range. All good.

When I went for Avastin yesterday my nurse had trouble getting blood return through my port. (the "port" is the thing that was inserted into a vein to give constant access to my blood and veins. "Blood return" means when the nurse injected a syringe of liquid into the vein through the port, but then pulled back to create a vaccume blood came into the syringe. Or in this case, blood did NOT come into the port). This means that little blood clots have developed on the inside of the port blocking blood access. This has happened only once before - when I went to the place in Atlanta for one of my blood transfusions.

In this case the problem is probably that blood is so infrequently collected through this port and medicine so infrequently injected. I only receive the Avastin every 3 weeks now, and I only have blood work done every 6 weeks.

the nurse was able to fix the problem by injecting an enzyme that digests the blood clots - but she had to do it twice. And wait 45 min - 1 hour after each injection to see the result. Since my medicine was not available when I arrived and we had to wait for that, only to learn that the port was not working, and then had to inject the streptokinase (the enqzyme that eats blood clots) twice and wait an hour after each injection, I was at the doctor's pretty much all day. Good thing I took work along. And good thing my colleague did not take me up on my offer to come into work that afternoon after I finished my chemo (anticiapted to be by noon, but not completed till nearly 4 pm).

Other news:

(1) My hair is coming back!!! I am so happy to have hair at all that I don't care if it is very short and sort of sparce and I still look like a marine at boot camp (a very old, very fat, very out of shape marine...)

(2) last week I took Thursday off and drove to Jackson, Mississippi to see neice Louisa M Chapman and her regional ballet troupe perform in the international ballet competition. It was well worth the trip, even if we could not find a very exciting place to have dinner after ward. I gather that Jackson, MS residents do not fancy night life outside of their living rooms.

(3) Tomorrow night I go to Cherokee NC to practice clinical medicine again in the Cherokee Indian Hospital clinic July 1 - 9. I think I am up to it, but I am a bit nervous about the ability to manage a day that is more physically stressful (have to stand and walk all day) and that requires constant attention and decision making. for obvious reasons, I am skipping the ED this year. dEfinitely not up to that yet.

(4) Main continuing problem is the neuropathy that developed from one of my chemotherapy agents. It has definitly improved since I finished the standard chemo. However, I still have trouble with my feet, am clumsy walking and occasionally have balance problems. I just have to hope it continues to improve. On the good news side, I no longer have to ask the vet to apply flea stuff to my dogs becasue i can again manage to open the containers myself. For a while there I could not. I stil have clumsy hands occasionally, but I think it is mainly normal clumsy rather than neuropathy clumsy. I am inclined, however, to attribute all my typos to neuropathy, rather than attribute them to sloppiness or my historic problems with spelling anything correctly.

Louisa

Labs last Thursday, Avastin today

In the past couple of weeks I graduated to only getting labs tested every 6 weeks - which means my blood cell counts have come back to more or less normal after the standard chemo and remained stable for several weeks. That is good news.

My most recent lab tests were last Thursday, followed by Avastin today. Currently my energy seems to take me pretty well through 3-4 days a week, then I get worn out and take it very slowly for a couple of days and recover. This week I am stepping up to working 4 (rather than 3) days a week. We will see how it goes...

My hair has returned to a sort of peach fuzz state all over my head. I suppose if you have not seem me at the end of my chemo with essentially no hair it does not look like progress. But believe me, it is progress. These days I mostly go hatless except when I need protection from the sun, which is any time I am out.

Results of the clinical trial that tested women who got standard chemo against women who got standard chemo plus Avastin during and for 10 months after standard chemo have been released and document a "progression-free survival" (time you live with no evidence of the cancer coming back or growing larger) advantage of about 4 months for women who got Avastin over those who did not.

Since I am getting Avastin, this is good news for me.Combined with the Japanese trial that suggests that dose dense TAxol (the kind of standard chemo I got where I received carboplatin every 21 days but got Taxol every week) gives on average about a 2 year progression=free survival advantage over the standard method of dosing (carboplatin and taxol both only once every 21 days) and i am feeling that it was a very good thing for me to have entered this trial.

The remaining question, which the trial I am in is designed to answer, is whether there is a survival advantage to getting standard chemo directly into the belly (intraperitoneal or IP) rather than into a vein (Intravenous or IV). Guess we will have to wait for the outcome of this trial to learn that answer. STudies to date suggest that there may be some advantage to IP treatment over standard IV chemo, but that is the chemo where both drugs are given only once every 21 days. No way to know what would happen with the Dense dosing of Taxol which I received.

Meanwhile, I increased my work days from 3 per week to a planned 4 per week starting this week. I have no plans to "overdo it" as many have expressed concern that I might. But at the same time, I see no advantage in prolonging an convalesence any longer than necessary. Sitting watching TV is loosing its charm - but I need to build back a bit more strength and endurance before i am ready to venture out on vacation trips or other outings. So pushing myself a little bitter further physically and mentally every week seems the best way to maximize the efficiency with which I get from where I am to where I want to be.

Thanks for your support.

First professional travel, peach fuzz extending its territory on my head

Last week I did my first professional travel since Chemo - 2 days in Washington DC attending a meeting (wed) and chairing a meeting (thurs). I am pleased to report that all went well. My energy and concentration were adequate for both tasks, although on Wed I did take an hour long nap between the meeting and dinner, and on Thurs after the meeting ended an hour earlier than scheduled, by the time it had been scheduled to end I was in my hotel room in my PJs sacked out on the bed watching TV. I did not leave that room again until I checked out the next morning - even ordered room service in for dinner.

But it went well, and I was able to visit with several friends in the DC area before returning to Atlanta Sunday night.

Other evidence of progress:
(1) my blood cell counts have been high and stable enough that I was able to skip my lab test the previous week. Hopefully soon the weekly testing will no longer be necessary.
(2) my head is mostly covered by peach fuzz - all areas except the very top. Clear evidence that however slowly my hair is starting to return. YEAH!

My 3rd dose of Avastin, the investigational drug that I get every 3 weeks for nearly a year after finishing the standard chemotherapy on April 12, will be 2 weeks from today. In the absence of really major events, I probably will not update this blog more frequently than at the time of each dose of Avastin. In other words, every 3 weeks starting 2 weeks from today.

Again thank you for your support.

energy up, fuzz returning

This is the first week I have not had to return on Thursday for laboratory testing. My counts had been stable enough for the previous 2 weeks that they decided to skip a week. But as a result I do have to go in for lab testing Monday.

This weekend high school friend Ginny Walker Middleton picked me up and we drove to Nashville to watch other high school friend Elaine Brooks Harwood be awarded her DNP (Doctor of Nursing Practice) degree along with the rest of the very first class of DNP graduates at Vanderbilt. Very exciting and also another experiment for me to learn how I held up. Surprisingly well - which is good because next week I have my first business travel since surgery to DC for 2 days, afterwhich I will stay with friends over the weekend. Hopefully my energy will hold up.

I am encouraged enough that likely I will try to go back to work full time (5 instead of 3 days a week) starting June 1.

Although I confess that when Ginny dropped me back at my house today I immediately plopped into the recliner and began to doze. But I notice that the shows I had begun watching full time when I was on full time leave and finishing chemo are beginning to bore me now. Probably not unrelated to the fact that my brain suddenly began to seem much clearer about a week ago. It does not require quite as much effort to concentrate these days.

And lastly, while you have to look very carefully to notice it, I believe a tiny fuzz of hair is beginning to return around the lower rim of my skull. Not much to write home about - but a beginning hopefully to soon be followed by larger hairier things.

Blood counts stabilizing, energy up

Just a brief update. Thursdays are the day I am on medical leave to have labs tested until my blood counts stabelize. Until today I have gone to Gainesville, come home, collapsed in the recliner and sat in front of the TV for the rest of Thursday and Friday, and pretty much dragged through the weekend.

Today I had energy to spare after my labs were collected. Elizabeth, my chemo nurse, printed out my labs since I finished standard chemo and sure enough the hemoglobin (red blood cell count) had gone down, although not quite far enough to require a transfusion, but then come back up again. Last Thursday it was 10.4 - which is not normal but is about the highest my hemoglobins would get immediately after a transfusion. And my white cell count (the ones that fight infection) also had gone down but last week were about 4,000. 5,000 is the bottom limit of normal. So that was all good and is reflected in my energy and endurance levels.

Since I will continue to get the investigational drug Avastin the first Monday of each 3 week cycle for about another year, this coming Monday I will have to take medical leave to recieve Avastin. I will have blood labs drawn then as well. But if the blood counts are as good today and next Monday as they were last Thursday, possibly I will no longer be required to take every Thursday off for laboratory testing! That would be terrrific.

Whether I will still need to take Thursdays and Fridays off just because of general energy levels remains to be seen. But based on improvement to date, I am hoping to be back at work 5 days a week by the beginning of June. This week is the first week that I have come home from labs and actually been able to do chores at home, making it seem likely that within a couple of weeks I will be able to work full time. At least I hope so.

Again, thanks for your support.

Sorry I have been so slow to update this blog. The last cycle of chemo therapy (last 3 weeks) actually took a bigger toll than I anticipated - probably disproportionate to the previous ones. Additionally, my expectations for recovery after finishing the standard chemo exceeded the reality of the pace of improvement. The combination resulted in me probably overdoing it and wearing out before i got around to updating the blog. But several people have contacted me a bit concerned about the absence of information, so tonight I am determined to get an update on board. Plus I am so far behind I can't really let it go much longer and expect to ever catch up.

As I said above, after the one week deferral of chemo due to low platelet counts, I started the last 3 week long cycle. The impact was stronger than I anticipated, possibly in part because I had begun to feel so much better during the week free of chemo. Whatever - it was really exhuasting and I found my energy much lower than before. At the same time, the anticipation of an end to the standard chemo ironically made it harder to tolerate. On the one hand, having done very well spending much of several months in isolation (with the exception of the dogs who are not so good at conversation) I suddenly found myself very impatient with sitting home alone and very eager for company. On the other hand, having gotten immensely good at living strictily in the moment, with the end of chemo in sight I suddenly was again focusing on the future - what I needed to catch up on at home and at work, the need to seek a more permenent position within CDC, whatever chores and responsibilties that had been deferred for the many months of chemo and now seemed imminent. The combination was really quite distressing - made somewhat easier that I had been warned to expect this.

Fortunately for me my sister in law Dore (Davis's wife) came from Dallas to visit for the last weekend of chemo. In addition to driving me for the last dose of standard chemo on Monday before returning to Dallas on Tuesday, on Sat and Sunday she helped me problem solve on several issue, most urgent the weeds growing rapidly and high in my front yard. This may seem trivial but it was causing me much distress, partly because the stage of rapid growth the prior year had corresponded to the period when I was working 80 + hour weeks on flu response and my usual yard guy was out of town or otherwise not responding to my phone messages. As a result my neglect of the yard led to some unindentified person in my neighborhood leaving a snippy anonymous message in my mail box telling me how much my neighbors would appreciate it if I would just mow my yard. I was aware that my neighbors were unlikely to be any happier if I failed to address the weed issues this year again.

But Dore was terrific. First she suggested a weed wacker since I no longer have a functioning lawn mower. We bought the week wacker, which was a good idea for the future. And we have it partially assembled. The last few steps need stronger hands so I am waiting for an opportunity to exploit a male relative, friend or neighbor.

But meanwhile after we had the weed wacker partially assembled Dore went out and decided that the weeds were easily coming up by the roots and that was better approach. So she spent most of Sunday and Monday afternoons actually weeding the whole patch by hand. She did a terrific job but I felt kind of bad about it because it seemed above and beyond the call of duty. But it was terrific and when we got the weeds mostly out (for “we” read “she”) she tells me the St Augustine is coming back, but could benefit from having some of the heavy thatch removed. She seems to know a lot more about this than I do.

Dore insisted that she was actually enjoying the weeding, talking to neighbors who went by and listening to the birds. Possibly it was true the first afternoon, but I think she was just being nice the second one. Either way I am feeling a bit guilty, but extremely grateful.

Either way, the lawn improved, I now have a tool (needing only a couple of things tightened by stronger hands than mine) for when future such problems arise. And I finished my last standard chemo treatment that Monday April 12, an event Dore and I celebrated by chowing down on take out Lebanese food and a gigantic chocolate cup cake.

On Tuesday April 13 she went home. The dogs wandered restlessly sniffing at things and occasionally barking at me for no particular reason. They insisted on going out and back in multiple times the night after she left, and wandered over to sniff at the futon couch that served as her bed en route inside and outside. Occasionally for no particular reason that I could identify Balsam (the hound) would howl at me balefully. I think they were looking for Dore. Explaining that she had to go home because her husband and personal dogs were needing her does not seem to satisfy them. Fortunately with time they adjusted.

Meanwhile, the Friday after Dore left (and after my last standard chemo dose) I was again called and ordered to report for type and cross (blood work necessary to arrange a transfusion) followed by another blood transfusion on Saturday. I had hoped I had already had my last transfusion, but did feel a bit less guilty about letting Dore do all the yard work while I napped once I knew my hemoglobin was again below 8.

The following MOnday I got the first dose of the investigational drug Avastin alone (which I will take every 3 weeks for nearly another year) and started back to work in the afternoon. Despite my intention to work full time, I discovered that if I got in before 10 AM, worked a 7-8 hour day, all I could manage after that was to nap in my recliner until bed time, then transfer sleeping locations. Thursday I was on medical leave to get labs, and Friday I made it in about noon and back home about 4. A bit discouraging since the combination of being off chemo and knowing I had been freshly transfused (a situation that normally leads to a large increase in energy and endurace) indicated I was at a peak of energy...

Based on that experience, for now we have set up a schedule where I work 3 days a week (Mon - Wed) and am on medical leave Thursday and Fridays. For now that is working. The second week I managed to stay awake between the time I returned home and went to bed, which I consider a victory. This week (the one that starts tomorrow) I intend to try to walk a little bit in the evenings. That may be deferred a bit because in addition to fatigue the neuropathy increased during the last cycle. That results in numbness and tingling in my hands and feet, but also affects balance and other things. Time will tell. So in summary the recovery will obviously be slower than I would like, but I am seeing steady if small progress week by week,

Last Sunday I have a visit from cousins Ed and Clara Chapman from CT. They stopped by en route back to CT from visiting thier daughter and son in law in western NC, and stayed long enough to take me out for Dim Sum and help put away my Christmas decorations. Amazing how much more roomy the house looks when I remove these and the massive display of all greeting cards I had received over the coursse of chemo (Thanksgiving, Birthday, Christemas, New YEars, Easter and Get Well cards had grown to quite a large population).

And last week Bruce (the yard guy) returned to town and mowed my yard - picking up where Dore left off.

So for now things are good. the Avastin is not supposed to affect energy, bone marrow, or hair growth, leading me to optimistically anticipate hair beginning to grow back the week after I took my last chemo and planning to return to swimming at the gym a week or 2 later. But I am adjusting to a more realistic view (my hair probably won't begin to grow back for another month or so and I can expect to be recuperating physically all the way through next December). I expect to continue going on Thursdays for lab studies until my blood counts return to normal, which probably will take at least a month after the last standard chemo (through late May). Elizabeth (my chemo nurse) tells me that she has instructed the office to check with her before calling me in for any more transfusions. She wants to let my counts drop to lower levels if necessary to give the bone marrow to begin its own transfusion. I am hoping the counts don't get that low again, since I know from experience that low red blood cells have a marked impact on my ability to get anything done, other than napping.

Now that Standard chemo is finished and, unexpectedly but not surprisingly if I had thought about it, I am using up all my energy trying to return as fast as possible to normal activity levels, I will probably update this blog less frequently. I will try to update at least every 3 week cycle of avastin for the time being. I will also update if there are any major changes in status. So you don't have to worry that something has gone wrong if I do not update. If anything goes wrong I will be sure to update.

No news will be good news. In the absence of update - assume all is well.
And thanks again to all of you for your support over this long ordeal. It was not as bad as anticipated, but it was not all that rosy either and your support, in whatever form it was provided, was immensely appreciated.

LAST STANDARD CHEMO FINISHED!!!!

Thanks to the assistance of my wonderful sister in law Dore, I received my last standard chemo this past Monday. Tomorrow I return for my major end of standard therapy check up (blood tests, CT scan, Doctor exam), Monday I continue the experimental part of the treatment (avastin every 3 weeks for about another year), and Tuesday i start back to work. Knock on wood I will have the endurance and not have to back off for more leave.

My apologies to folks I worried by not posting this Monday night. Between the last chemo, visiting with Dore, and napping while Dore worked like a dog I sort of ran out of time.

More details latter I promise.

SEcond of 3 treatments in the last cycle DOWN!

This morning I received Taxol, the second chemotherapy dose in my last cycle of 3 weeks of treatment. So far, all went well. My blood counts are really staying up - the tests last Thursday showed a hemoglobin staying up at close to 10.4, good platelets over 130,000 (100,000 are needed before they will give me treatment) and white cell counts in the 2,0000+ range.

So far, so good. That week vacation from chemo seems to have done me a great deal of good as far as the strength of my cell counts. It was also good and encouraging to have the week off chemo and recognize how much better I felt, how much my mental concentration and physical stamina improved.

However, back on the chemo both have done right down hill to a remarkable extent. My week vacation from poison raised my ambitions but the return to chemo has dashed my ability to do anything to enact them. So I am more aware than ever of what needs to be done but inable to do much of it. Oh well, just this week and one more left before I come off standard chemo and hopefully start improving.

Other issues: My lawn has started growing and the front is totally covered with fast growing weeds. If I am not able to do something to them soon I fear they will totally take over. Hastings (A local garden place) tells me I can buy a weed killer, hook it up to the garden hose, and spray the area and it should get rid of all weeds without bothering the grass. Sounds great. Also sounds like more than I can manage at the moment. However, my sister in law Dore is arriving from Dallas Saturday afternoon with the primary intent of driving me to my last chemo on Monday. But last night on the phone she offered to help with other things, and had spent the day gardening. Maybe I can convince her to spray the front lawn for weeds. It is a departure from her approach to gardening - she and my brother Davis are very organic - but she may be willing to compromise to help me out. JUst hope all the seed pods do not develop and bloom out before she arrives Saturday afternoon. 4.5 more days to go - we may make it!

My doc started me on neurotin, a medicine used to treat siezures, to try to slow the progression of the neuropathy and then speed its withdrawal after the chemo is over. The neurotin seems almost worse than the neuropathy. Not really, but it does make me drowsy and unsafe to drive - but it also seems to diminish the neuropathy. The neuropathy really improved during that one week off chemo - a hopeful sign that things will improve once i finish chemo (does not always happen, but usually does). However, it has rapidly gotten worse again on chemo. Also the "chemo brain" has worsened - I feel generally off balance, weak, tired and unable to get anything done. Fortunately there are only 2 weeks left. If the neurotin will improve / prevent worsening of this then it is work working with I just have to be sure I finish all my tasks that require me to drive in the morning before I take the morning dose of neurotin on any day I will need to use the car.

A friend from work and church invited me over on Easter morning to have leftover ham and potates gratin, plus lovely desserts. She had cooked a beautiful meal for visiting family the night before. They took off headed home early Easter morning, Sue went to services and then fed me afterward. It was a lovely opportunity to get out (no crowd, I could emerge) a delicious meal as always at Sue's, and a good opportunity to get out of the house confinement. but I was surprised how much energy it consumed to dress nicely and put on makeup - something i have not really done since I quit going to work. MAde it clear that my energy level was lower than I realized. And the visit was delightful, I returned home and then slept all afternoon in the recliner. I mean slept. Could hear myslef snoring but was too tired to bother to get up and readjust.

Well, you can never have too much naptime. May suggest that returning to work full time the week after chemo may not be totally realiztic, but you can only try. If i can't manage it, I can always cut back again.

Happy Easter everyone - 5 cycles and 2/3 treatments in the 6th cycle down, 1 standard treatment to go. Perfect timing to coincide with the major religious celebration of rejuvenation and rebirth.

next day part 2

i failed to explain that I did not start my new medicine today because the instructions say to start it at night because it likely makes you drowsy. Too bad I did not think about that last night. Looks like tomorrow may be another late start day.

New medicine starting tonight. Check in in a couple of days to see (2) how the labs on Thursday go and (2) if I am still awake enough to add to the blog after I start the Gabapentin.

next day

I let the dogs out and went back to bed. I woke up at approximately noon ish when someone called me. Apparent;y that post-chemo famous steriod boost does not work as powerfully as it used to on by the 6th cycle. Although I did take a sleeping pill last night. But at about 10 pm and it only lasts for about 8 hours. And in the past often was not very effectively at all.

Oh well, sub total of accomplishments today:
1. made further progress on the necessary arrangements to be made to close out my original checking account and operate contiually out of the new and hopefully more secure one
2. becaue it was such a beautiful day (63-66 and sunny) and because my white blood cell counts had been the highest they have been in months yesterday due to the week vacation from chemo (4,500 - almost low normal) I decided to take advantace of the beautiful day to get out and run some necessary errands before my energy faded
3. dropped off and picked up dry cleaning, out breakfast/lunch out at panera bread, did grocery shopping for essentials (OK mostly for cravings like crystal light drinks and coconut cake for Easter, but also fresh fruit and other good healthy things), and tracked down and identied the driving route and time to the local place in Atlanta where I go for chemo next Monday on account of my usual chemo nurse being on vacation.
By the time i got home and feed the dogs it was after 4 and I was pooped.
4. so it looks like probably no more paperwork accomplished today. Unless i whip through my medical bills while watching TV from the recliner chair.

Still over all pleased to be starting my 6h and last round of standard chemo. a few small wrinkles.

I did not start my new medication - Gabapentin also known as neurotin. Despite my eager description of how the week without chemo had really improved it and although I occasionally had trouble opening things the frequency with which I was aware of it beyond my hands and feet (legs, back face) had really receded and practically disappeared. they were not impresssed and thought I should start this drug, normally given for seizures, which is supposed to slow the progression of neuropathy and then after I finish the standard chemo to increase how rapidly it receeds. Apparently it can take years to receed.

Also, this morning I looked down and noticed petecia around my ankles. these are little red spots that often form when platelets are low. If you are a fan of CSI or NCIS or other detective shows, these are the little red spots that medical examiners point out to the detectives as evidence that the dead person was strangled or someimes drowned. But I promise you no one has been sneaking in and trying to strangle my feet while I sleep. Remember, the dogs lack pre-hensile thumbs. And low howls at the first evidence of intruders. so....

Likely these date from last week when we know my platelets were low and I just failed to notice them until today. If not, it may be a sign that my platelets are dropping rapidly in response to this latest round of chemo. On the good side - that is clear evience the chemo is doing what it is supposed to do. On the down side - it may suggest another delay may lurck in my future. Time will tell. We will get the first hint when i have my blood tested this thursday.

The people who clean my home every other week came this week and suggested that could help me take down the Christmas decoratins and put them away. Hmmm. I told them my cousins were coming on April 25 and I had promised them they could help take down and put away the Christmas decorations as a celebration of finishing my chemo. That made my cleaners happy. I hope have have finished chemo by then but if not, I will still be ready for the Christmas decoratioms to go away. Somehow once Easter passes they cease to seem festive and become sort of tired.

That is all the news that is fit to print for today.

6th cycle successfully started

Blood counts were adequate today, so we successfully started the 6th and last cycle of standard chemo. That means after starting the day getting blood counts done at the hospital, I received my 3 chemo drugs, had a doctor visit (well really with the nurse practitioner who works with dr. Green but he also dropped by later), and got the schedule straightened out for the next part of the chemo.

The next 2 weeks, assumeing my cell counts hold up, I will get taxol alone on Monday. My wonderful chemo nurse Elizabeth will be on a well earned vacation in Hawaii the following week, but has arranged for me to get my chemo here in Atlanta in the office of Dr. Green's partners. And the third week in addition to the Taxol on Monday and the labs on Thursday, I will have to get additional labs, have another doctor's visit, and get a CT Scan. It will be a very busy week.

If I have the schedule right, and if all the counts hold up, the following week I will be finished with standard chemo, but not with the whole run. I will start the part of the investigational trial where I get Avastin alone the first Monday of every 3 week cycle and will continue this part for nearly a year.

I also hope to start back to work that fourth week.

All in all it will be a pretty busy 3rd and 4th week. Wish me luck.

Z-Z-z-z-z-z-z

So after all that bragging about my stamina yesterday i spent most of the day today dozing in the recliner chair again.

Oh well, I still have the weekend to try to knock off more of the past due paperwork before I get dosed with poison again - I hope. The clinic called to say my platelets (labs from Thursday) were up but only to 95,000. So I have to have labs tested again Monday morning before I can get the chemo. Since they only have to rise another 5, 000, hopefully they will accomplish that by Monday and I can proceed to start the 6th and last cycle without further delay.

My day in court

A week without poison is a wonderful thing. My amazing increase in mental concentration and physical stamina is remarkable and reassures me that the recovery period (once I stop pouring poison into my body every Monday) may be a lot faster than I had been thinking.

Today was the day I was required to appear in court because of that speeding ticket that I received about a month ago while en route Gainesville to get my labs tested. the assigned time was 2 PM.

Today was also the day I had to drive to Gainesville to get my labs tested. So I started my day rather early in order to get to GAinesville, collect all the labs, get back to Atlanta, and find the court which is a long way from my house in southwest Dekalb County.

I have been quite worried about my stamina and ability to manage the court date. I have also been worried about spending time in a crowded court room full of people, some of who were likely to have things like colds, flu, possibly even multi-drug resistant TB. But there was nothing optional about the citation. Show up or your driver's license will be suspended and a warrent issued. No other alternatives were offered.

So it was a relief that my last transfusion was last Saturday in prep and that this week I happen to have bonus energy because of the deferred chemo. Little did I suspect how important that would turn out to be.

After dressing in a suit and putting on make up for the first time since I quit working, I drove to Gainesville, gave blood, and got back, and went to CVS to invest in a supply of surgical masks with still an hour to spare before I was required to be in court. Seemed at that point like I was doing excellently well.

About the surgical masks: those are the little green masks that people can put on by looping things over their ears (used to have to tie them around your head). How good a job do they do preventing infection? Well that is debated. We used them when I was a medical student and only about a quarter of our class converted their PPD skin test and had to take a year of medicine to prevent TB illness. The official recommendation for both H1N1 flu and TB from CDC is currently an N-95 respirator, which will make it almost impossible for a virus or other microbe to get in. As it turns out I own an N-95 respirator - a large grey mask with large bright pink filters on either side issued to me during the Hantavirus outbreak. Any of you who received Christmas letters back in 1993-4 may recall one with a photo of me, gowned, gloved, wearing a large loud face-obscuring, alien-bringing-to-mind face mask and shaking a rodent out of a trap into a plastic bag. Yup. that is the one.

So I considered wearing it to court today. Probably if I had been a doc advising a patient how to prep for a long day in court surrounded by lots of people of unknown health status that they could not avoid closely associating with, I woudl have said "Look, it is your health on the line. Just wear the mask and look foolish but protect your health".

But doctor's make bad patients, I was not eager to draw so much attention to myself in a public display, and a little afraid that the court woudl think I was grand standing or trying to be a smart alack, so I went for surgical masks instead.

Circumstances of my citation: entering the Interstate to drive to Gainesville I noted 3 Dekalb count police cars lined up on the right hand edge of the interstate (an uncommon sight) with the door of the middle one open and a policeman aiming what appeared to be a radar gun directly at me. So naturally I checked my speed. Fortunately for me it was 63 and since I thought I was in a 65 zone I breathed a sigh of relief and continued with my habit of immedaitely moving over to the 5th lane just next to the HOV lane. This is the least trafficed lane. Further more when I exit for Gainesville I do so by moving onto 985, which exits from the left. So... it is certainly the easiest and probably the safest way to make this particular commute. I remember noting that the traffic was heavier than it usually was on my Thursday commutes to Gainesville.

So cruising along in the 5th lane, imagin my surprice when a cop car comes up behind me with his lights flashing. I pull over (which took a while since I had to traverse 5 lanes back to the right hand side and pull over). (but it also took the cop a while to get up the nerve to get out and walk up the edge of the interstate to my car. you would think that if you were driving along and you saw a car pulled over to the right and a cop car right behind it you would automatically move into at least the second lane to decrease the liklihood that the cop would get flattened when he tried to exit his car and walk up to mine. But apparently this thought did not occur to my fellow motorists so... Flinch...flinch... eventually get out and come up.

to my surprise he told me that the laser gun, operated by a different cop whose name he gave me, had clocked me at 75 in a 55 zone. I told him I thought it was a 65 zone. I was wrong. I also told him that I would protest that because my speedometer when I was directly by the guy with the gun had read 63, which is no where near 75. He repeated the name of the guy who had the gun, in a way that seemed to disclaim responsibility for the accuracy of the clocking. And gave me a citation that required me to present to court today at 2 pm. No option not to just pay the fine and skip the court call.

So today, after weeks of worrying about my physical stamina and risks of infection, i went to court. So did, by my count, about 50% of Dekalb county. When I arrived the first clue this was not a normal day in court was the fact that I passed 3 filled parking lots and had to keep driving into what felt like the wilderness to find a lot I could park in. the second clue was the line of citizens that snaked around 2 sides of the building just waiting to get into the building. The third clue was the fact that the traffic violations were being tried in 3 courtrooms divided by first letter of your last name. The final clue was that a policeman was screening at the door telling you if you just took yourself over to the far lane and got into the line where you immediately paid your fine today they would knock 10 miles an hour off your citation.

Amazing - I have never been aware of the police having fire sales for discount citations before. I have never seen such a mass of people being herded into court before. But then I have never seen the police lining up on the interstate with 3 cars on the sholder using a lazer gun and the other 2 police to chase and issue citations before. The effort seemed puzzling since this is not a part of the interstate that has many accidents. I travel it regularly and have never seen a crash. But the county and city governments are experiencing financial hardship leading to furloughs of critical public safety personnel, and therein lies, I suspect, the motivation behind this set of speed traps (I witnessed the same performance 2 more times in the next couple of weeks with 3 Dekalb county cars, and now frequently notice one gwinnet county or Hall county car further up the interstate sitting on the side of the road in the more usual (and safer) manner looking for speeders.

The problem with this is, puzzeled how my speedometer could read 63 and the laser gun read 75, unable to convince myself that between the ramp where i entered and the very next exit where I pulled over I could have possibly sped up more than 12 miles per hour beyond the last measurement I noted on my speedometer, I had done some research on the accuracy of laser guns. And here is what I learned.

They are most accurate when following the car for longer periods of time. Whether a laser gun or a radar gun, they cannot lock onto a car and follow it despite larger vehicles passing in between then with out a clear line of sight to that car. So for instance when I was riding along in the 5th lane (the only time I could have sped up without noticing it) with 4 lanes of moving traffic between my little compact car and the guy with the gun, it is likely that the speed the speed of the intended target car (my car) but rather that of some in between vehicle. And lastly there was information I did not fully understand that talked about cosine effects and stated that if a radar was 30 yards off the target lane with a 300 ms sample period (I assume this is 30 millisecond but who knows...) and a +/- 1 mph accuracy, the gun could not measure a target going 65 miles per hour accurately if it was less than 230 feet (77 yards) away. While I did not understand all the physics, I did understand that the only time he could have directly tracked me before I crossed over to the 5th lane I was far closer to him than that, due to the position there on the shoulder.

So I had decided that I would not just pled guilty and pay the fine, I would agree to pled guilty to my offense (63 in a 55 zone) but not to the citation (75 in a 55 zone) which was obviously an erroneous measure for all the reasons outlined above.

a note, the week before I got the citation a law had changed that raised the ticket price considerably for anyone going more than 20 miles an hour above the speed limit. Further suggesting to me that it was not a coincidence that the citation said 75 in 55. The county needs money.

but between then and now the little parades of 3 police cars on the edge of the interstate targeting cars have disappeared. and today the county is offering a deeply discounted sale on tickets if you just quietly give them your money right away and go away. I interpret this to mean that someone in the county police office had figured out the same things I did about the likely accuracy (or lack thereof) of laser citations under these circumstance. That Plus the more junior cops probably got tired of putting their lives on the line pulling people over on the interstate and then having to get out and walk along the side of traffic flinching every time a vehicle sped past for no reason that had to do with public safety.

I declined the deal, but sat in court watching long lines of folks who had accepted it being processed before court started for the rest of us who stubbornly chose to skip the sale. Which, by the way, still packed the courthouse. Then they processed us into two groups - those pleding guilty or nolo and a second group pleding not guilty. This group was much larger and would have to go to court at a later date. I suspect that it is rare for more than half the people required to show up in court to pled not guilty and agree to go to court. So maybe many of them had been doing the same research I did.

But court is intimidating and scary. Sitting there I began to worry that I had made a bad decision. Could I prove what my speedometer said? Well, no, I was alone in the car. Did I want to incur the cost for the state of a court trial (which woudl likely exceed the cost of the ticket) for something so trivial? Well not really. Suddenly it seemed utterly inadequate to stand up and explain what had seemed really logical before - the discrpancy between my speedometer reading and that of the laser gun which exceeded all reasonable margins of error, the multiple aspects of the physical situation that raised the probability that the laser reading was, indeed, inaccurate. As it appeared to be too late to just knuckle and pled guilty, which I truely do not believe I am but court and disagreeing with police is scary, I decided maybe I needed to call a retired judge that I knew and ask for a good lawyer. This whole thing seemed to be blowing out of proportion, but then that was what they counted on when they did mass citations of people targeted under conditions that likely did not result in accurate laser gun readings, then required them all to show up at the courthouse and offered a deal where 10 miles an hour were knocked off the citation if you just lined up and paid your fine immediately. Which does not seem right, no matter how much financial trouble the county is having. And tends to undermine trust in the police. At least my trust.

In the end, when I was called up to talk to the clerk to schedule a courtdate I handed her my paper pleding not guilty and told her I was unwilling to pled guilty to 75 in a 55, which I believed was erroneous. I did, however, prefer to avoid going to court and I was willing to pled guilty to what I was guilty of, which was 63 in a 55 zone. She told me if I went downstairs to the cashiers and paid the fine today they would knock 10 mph off the citation, so it would be 65 in a 55. I said fine, hot tailed it to an ATM, took out a bunch of cash, and went back to the cashiers where I stood in line for nearly an hour to pay my fine. Sometime during that hour it occured to me that this was the same deal the cops were offering to anyone they could convert before the court hearing.

Not sure if I won or lost that one. But no one in DEkalb county should really need to pay property taxes this year and I am confident we raised enough money this one day in traffic court alone to practically stop all furloughs of public safety officers and to build new schools all around.

Another odd thing - the crowd was more than 95% black. I don't know the composition of Dekalb County, but the repsentatives from 3 of the 6 districts are black and the other 3 are white. If that reflects demographics, the people in the courtroom were way disproportionately black compared to the county population. Racial profiling? hard to imagin since the cops, court clerks, and cops present in the courthouse were almost universally also black. But it does seem that something is disproportionate in who winds up being required to come to court for traffic citations. Maybe there was some deal I missed where you got to have 10 mph knocked off your citation AND did not have to actually show up and spend your day in court.

But for now, it is over and I am grateful. And when I remember practically lying on the counter when forced to stand in line for an hour in the post office to mail something important by overnight mail, and compare that to today when the only weird thing about my behavior was wearing a surgical mask, I am grateful that this was the week chemo was deferred and my energy level way up.

On the way home I dropped all my tax prep paperwork with the accountant. Another chore knocked off before I again start droping poison into my system weekly.

http://www.moesmisadventures.blogspot.com/

My college friend Gina (Mac '74) in Seattle is a smart lawyer, savy political commentator, and as the daughter, sister and mother of physicians and currently a lung cancer patient, a person with an acute interest in health care legislation. I just discovered that over the past couple of days she had posted a series of thoughtful and informative (summarizes key components of the health care legislation passed by congress and provides informed commentary on the probability that the lawsuites arguing that the federal government does not have the constitutional right to impose a requirement to buy health insurance will succeed) on her blog, the link to which I have taken the liberty of posting above.

The purpose of her blog is not to debate health care, so if you have negative reactions please send them to me in an email instead of bothering Gina with them (unless you are a friend of Gina's in which case, swing away).

Myself, add me to those who believe that the current American system needs reform. And that a base of government sponsored "socialized" medicine that provides the basic essential medical care to all Americans to supplement the better policies that all cannot afford would be a very very good thing.

After all, government medicine is providing my health insurance (Tricare) and medical leave (PHS policy on medical leave) and is the insurance and health care provided to all vets who seek care at the VA, to all uniformed services active duty and retired and dependents, and to medicare and medicaid beneficeries. Not to mention members of congress.

Time will tell whether the specific provisions in this legislation were wise or not. But for myself, I think it is time something began to change. If you have access to good medical coverage, and you do not work in clinics where you prescribe necessary medication that patients cannot afford to fill or EDs where people with no coverage present for emergency care that could have been avoided if they had had the option to present for preventive care, and if you do not work with these folks enough to learn their stories which rarely are as irresponsible as it is convenient to believe if you want to maintain the self -protective belief that others have less benefits than you because their behavoir has made them less deserving - then it is easy to think that the system is not broken for far too many Americans.

This does not solve anything - but at least it is a start in the right direction.

If you think we can't afford this, then raise my taxes (and those of all Americans in my tax bracket and above - but not below). We can afford to provide minimum care for our most needy and prehaps it is a better thing to do than buying bigger houses, redecorating more expensively, or investing in additional stock portfolios.

Just my opinion, but i am sticking to it. The wealthiest nation on earth should not have one of the lowest prenatal visits and highest perinatal mortality rates and the majority of bankruptcies should not be due to unexpected familial medical expenses. It just should not be so.

Gifts this week

On Sunday a friend from work brought over a large supply of home made Irish Stew and stuck around to watch TIVOed Harry Potter movies with me.

On Monday my neighbor took me to chemo and back, then brought over a large supply of delicious home made beef and vegetable soup.

On Tuesday I recieved a note from the Sylva First Baptist Wednesday night prayer circle and a large CARE package from my neice Emily, who thought the remainder of my chemo would go better if I was supplied with popcorn, her favorite movie, a large U Oklahoma T shirt and spotted Sooner socks.

By Wednesday night when my neighbors across the street supplied hot fresh home made pancakes and grapefruit for my dinner, I had realized that having to delay chemo this week was a blessing in disguise. My energy and mental concentration has been notably better allowing me to (cumulatively since Monday) return to work and clean out my cubicle and check the job postings, catch up on bills and paperwork in most cases (still behind on going through all the medical bills...), and get all my paperwork organized to be able to take it to the accountant before the March 30 deadline for this tax season.

Wednesday I also receieved calls from my sister in law Dore and my cousin Ed confirming plans to visit in April. and from my sister just checking in.

All in all, not a bad week. Tomorrow I have to return to Gainesville for lab work, go to court to argue that I think the speeding ticket erroneously recorded my speed (my speedometer said 63, not 75, and the difference in fine is considerable). Then I have 3 more days to finish the remaining paperwork before I get dosed with poison again (hoepfully) on Monday March 29.

If all goes as planned, I will start my 6th and last cycle of chemo on Monday MArch 29 and complete the 3rd and final dose on Monday April 12.

Fingers crossed.

Last Chemo cycle delayed

Today when I went for chemo I started the day by reporting to the hospital to have a STAT blood count done. this has been required every time my lab test on the prior Thursday show a white cell count or hemoglobin (red cell) count that is too low to allow receipt of the chemotherapy. Which means it has happened essentially every week (every week except for 1) for the last nearly 2 months. Every since before my first transfusion.

This Thursday my hemoglobin had been low enough that I was required to go in for another transfusion (the third) last Saturday. And the white count was low enough that I had to repeat it this morning before I could get chemo.

But this morning for the first time I had blood counts that were too low to get chemo. Ironically not the white cell count, which was 2,200 which is higher than it has been for some time. (it has to be at least 1,500 before they will give me chemo). And my hemoglobin was so high that I did not even qualify to get the shot of erythropoitin that I have gotten nearly weekly for some time.

But the platelet count was low - 85,000. Normal is over 100,000 and that is what is required to receive the chemo treatment. Below 50,000 there is real danger of bleeding problems since platelets are important to help blood clot.

So the start of cycle 6 has been delayed a week to let my blood counts recover.

This may be a good thing. The neuropathy (numbeness and tingling in my hands and feet) has been getting worse and interfering with my ability to open packages sometimes. Hopefully with a week of no chemo it will improve a bit before I start poisoning the system again.

Also, while the original sporothricosis lesions have cleared up on therapy, I noted Saturday night some new lesions on my right thumb. So maybe it is good to give a full week of Itraconazole treatment for the sporotrichosis before I knock my white blood cell down again. It can spread widely in immunocompromized hosts and I don't really thing that would improve my exprience, so happy to do whatever I can to keep it contained.

Of course this will delay my completing the course by a week, as well as my returning to work by a week.

In the big picture I am quite lucky to have gotten this far without delays, and this is really a rather small thing overall. I am just getting impatient to finish and move on to the next phase.

Well, I can manage one more week.

how we talk about cancer

http://well.blogs.nytimes.com/2010/03/15/with-cancer-lets-face-it-words-are-inadequate/


the link above takes you to a New York Times Health article that discusses experiencing cancer and the language we use to try to describe it. Gina Cullen (Mac '74 from Seattle) identified it on her blog, where she often shares her experience with lung cancer, and I appreciated it enough to copy it here.
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For myself, I agree that "fighting" does not sound like what I am experiencing. Neither does "bravery". More - since i have given up on working for the remainder of my just over 3 weeks of remaining chemotherapy and mostly spend my days sitting in a recliner chair watching South Park, old Harry Potter movies and other things TIVOed from cable with the dogs - I would have to say I can't remember when i have felt more relaxed - a state not really compatible with "fighting".

Nor does "brave" seem to describe my internal emotions. More like "acceptance", a far less demanding emotion.

I am optimistic about outcome here, but recognize realistically that the optimism may not predict outcome. Putting things in order internally and externally is an easier stage than the periods of life when I have been struggling with persistent hard battles. This one is mostly out of my hands - although I fully intend to do whatever i can to make decisions and take actions that will tip the balance in optimistic directions.

Beyond that, each day the primary thought is, given the limits of my time or (these days mostly) energy, what is the most valuable use of the time available to me today? that is the most important decision I face these days. Actually probably the most important decision any of us face any day - just much of our lives we have the luxury - or disadvantage - of not being conciously aware of that.

Thanks again to all of you for your support, your friendship, and your gifts to my life.

68 degrees and climbing

Atlanta weather took a sudden change into spring. The past couple of days the temperature has been sunny and in the high 60s, lovely spring weather resulting in large numbers of daffadils blooming out in the yard.

This was good timing, as the SHEA (Society for Health Care Epidemiology and ?) meeting took place in Atlanta this weekend and large numbers of medical scientists and other professionals descended on our fair city as a result. Including Stu Johnson with whom I had a lovely dinner on Friday night. Between the two of us, we caught up on most of our fellow interns from so many years ago. Stu came equipped with a thumb drive full of the latest photos of his family and friends, but neither he or I could figure out how to download it to my Mac. So I had to settle for verbal descriptions.

My ability to enjoy the lovely weather was impaired by being required to again travel to Gainesville for the usual weekly laboratory testing on Thursday, but then in addition to spend part of Friday being typed and crossed (lab testing in prep for another transfusion) at Northside Hospital in Atlanta and then spend most of today at Northside actually getting the 2 units of packed red blood cells. The Friday experience was prolonged because for the first time my port did not seem to be working well - but that was straightened out in the end. (My port is a permenant indwelling thing that allows me to have blood drawn and receive chemo or transfusions or other things by vein without having to have a new IV placed each time).

But now post transfusion again my energy is higher and tomorrow, Sunday, is another open day. Hopefully the good weather will hold, I will get some chores done at home and have some time to spend sitting in the yard enjoying the weather...

Monday will be the first treatment of my last cycle of standard chemotherapy. That means it will be my last 3 drug treatment day (Taxol, Carboplatin, and Avastin), and will be followed by 2 successive Mondays of 1 drug only (Taxol - the flower power drug), after which I will have completed the standard chemotherapy portion of this treatment. That will be followed by the investigational phase during which i will continue to get Avastin IV once every 3 weeks for approximatly a year. However, the Avastin alone is not expected to have a big impact other than further beating the cancer into submission. I expect that after April 5 my hair should start growing back, my strength and mental concentrating ability should begin to return, and I should be able to start building back in multiple way and return to work.

Small victories

Yesterday my friends Robert and Cuca worked together to get me to chemo, although only Robert drove because Cuca was nursing infection and thoughtfully did not want to share. Completing this chemo treatment finished my 5th cycle of chemo therapy. Now I officially only have one cycle left to go, which will begin next Monday March 22 and end the Monday after Easter - symbolic timing for a new beginning.

The chemo-associated neuropathy (numbness and tinginling in my hands and feet seems to be progressing (legs, back face) but the good news is (1) now that I am taking vitamin B 12 and B stress complex in for 2 weeks and in recently larger amounts it seems to be stabelizing or even receeding. Much better today. (2) at least part of the increase is likely due to the addition of the Itraconazole for treatment of my sporotrichosis since numbness in hands and feet is an identified side effect. (3) all should recede (hopefuly back to normal) when the chemo is over. (4) if need be they can decrease my doses or change to another drug. HOWEVER since beating back this cancer is more important than short term discomfort I am hoping to finish out this last cycle with full dose first line drugs so...

Today - my steroid burst high energy day - I was able to make lots of progress on that pesky home paperp work. Did not totally finish making all the changes nescessary to close out the old bank account and open the new. Did not start on putting together the stuff I need to send to the tax preparer. Did not finish with the credit card straightening out (the slow phase being reviewing every thing to ensure no fraud before I pay) but substantive progress none the less. And tomorrow is another day when I should make it to noon on the residual chemo steroid burst before I start losing energy.

Made it all the way through the day today with out a nap. Although I did pause mid afternoon for a long soaky hot bath using (1) the little blue floating ducky from the Gina in Seattle care package, (2) the lavender bubble bath, liguid soap, and after bath body lotions from the First Baptist Sylva Care packages, and (3) the home made pepermint skin rub from the Emily Buchannan Care PAckage. I decided if my standard chemo time is running out then I better pick up the pace on using up my chemo-support care package contents. I think I am making pretty good progress. Thanks guys, for all the raw ingredients.

All in all a good start to the week. Now to see what I can accomplish tomorrow.

first Daffodil of Spring

The first fully bloomed out daffodil of spring was spoted in my back yard today. Other good things: Managed to get the dogs to the vet for their shots.

On the other hand, catching up on personal paperwork is going very slowly, as I seem to wear out after a couple of things and spend a lot of time in the middle of the day napping. And the chemo-associated neuropathy seems to be progressing. Hopefully it will recede after I finish chemo, but I have upped my daily doses of Vitamin B-12 anyway.

Well, A little progress a day is better than none. And only 1 cycle left after the last dose of the 5th cycle this coming Monday.

What I need now...

Thanks to all of you who have offered to drive me to chemo. As of now I think all the remaining Mondays already have an associated volunteer driver. However, i am keeping the list of those of you have have offered available in case I need back up. And for all of you who have taken the time and effort to drive me to 1 or more chemo appointments, Thank you very much. You have made this experience so much easier and kept it from being lonely.

Also thanks to those of you who have, as my energy has receded, come by the house with food, company, assistance with delivery of dog food, grocery shopping, folding laundry, cleaning house, or other efforts. Each little effort has really helped. And I am also appreciative of those of you who have offered help when I need it. If I have not taken you up on the offer, that does not remove the support provided by the offer. I have all the cards still displayed in my living room, where they will all remain along with my Christmas decorations until i finish the standard chemo part of my therapy in April.

So again I thank you all for your remarkable support. I have no unfilled needs at present, but appreciate all your offers of support for when I have and may yet need them.

I am very fortunate to have a community of friends like you all.

Louisa

More Good News

A study out of Japan says that women who get "dose-dense" chemotherapy - which means Taxol (my flower power drug) divided into equal doses each Monday while getting carboplatin only on the first Monday of each cycle - have an approximately 2 year survival advantage on average over women who get all carboplatin and taxol only on the first monday of each cycle.

I am getting dose dense chemotherapy - so this is good news. Add that to the avastin advantage and i am feeling very good about having decided to enter this clinical trial.

Also getting rather tired of constant and growing fatigue and being confined and being bald. ONLY 5 more weeks to go!

What's New?

I hear Brother in law Joe is not only home but back in the office working. Martha, on the other hand, is exhausted and trying to catch up on school.

Jacob P Dawg Chapman has ceased his falling spells and appears to be in no more pain. Whatever went wrong with his spine or hip seems to have corrected with a few days of rest and that new pain med the vet gave him. Hopefully it won't return for a long time. No more falling spells.

Louisa post-transfusion went to the doc on Tuesday and got diagnosed with sporotrichosis (a fungal infection) in her finger and is now on treatment for that. This probably has nothing to do with chemo, except that I got stuck with a splinter from a table that had spent most of its life outside sometime in early January, and acquired an infection from that that is slowly spreading. MAybe the chemo gave it a foot hold, or maybe I was going to get it anyway. The good news is, I finally have an interesting case to present at the InterCity ID Dinner Conference...

Louisa post-transfusion gave a massive push to get through the paperwork that was building up before terminal fatigue sets in again. Good thing, as I discovered today that someone was faudulently having his CITI AMEX automatically paid out of my account since January. Closed that account, opened a new one and now I have to find the energy to transfer all the things that are automatically paid into or deducted out of that account... Sigh. A lot of work. And I still have to work my way through the credit card and medical bills that I did not get to today.

My sister Martha is due for a visit this weekend and to take me to chemo on Monday. I am looking forward to the visit.

The dogs have enjoyed the string of visitors through this house (the large contingent of Arkansas cousins, the small (n=1) contingent of Ark Cousin, and soon the sister). They are somewhat lonely left with just me. Further, they seem puzzeled as to why only 1 of us was allowed to watch the olympics from the perch of the recliner chair. Occasionally Balsam challenges my supremacy there - yesterday he tried to sit on my lap again which was how he went off to sleep for the first phase of his puppydom. Unfortunately (or fortunatly) a large 70 pound Plott hound does not fit securely on the lap of an adult sitting in a recliner chair, so he rapidly fell out and did not try again.

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...