Monday, May 24, 2010

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.

Saturday, May 15, 2010

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.

Thursday, May 6, 2010

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.

Sunday, May 2, 2010

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.