good trip to Oregon, not-good CAT scan

To start out with the good stuff, just let me say that we had a very good time visiting with Eddie and his friends in Salem.  The trip was a bit of a stretch, but we are very glad to have done it.  Beautiful weather, and good visiting.

 

This morning, though, our oncologist had to let us know that the CAT scan results from last week show Steve's cancer has progressed on pretty much all fronts—lungs, lymph nodes, abdomen—and fluid in his lungs has increased.  We are disappointed, of course (to put it mildly), but have to admit it's not entirely a surprise because the energy bounce we had anticipated during the three weeks off chemo never came, but rather the reverse—less energy, more discomfort.

 

The doctor says we are getting near the end of the list of likely chemo regimens for this type of cancer (for which there are apparently fewer choices than for some other kinds).  There is one more to try, and we are trying it.  Present plan is for two cycles of three weekly doses with a week off in between, then another scan.  Meanwhile, the doctor will consult with his colleagues elsewhere to see if they have any ideas he hasn't thought of, or if there are any trials of new drugs for which we might be eligible. 

 

We hope to go ahead with most of the activities we have planned for the month of October, which involve quite a bit of traveling (mostly family visits).  We'll just have to take things as they come—which is always true, of course, but seems a more obtrusive realization now than it has before.

 

Thanks as always to all of you—our friends, "cheering section," "prayer warriors," and other well-wishers.  We continue to appreciate every encouraging vibration.

 

--Carol

Days of Awe

These are the Days of Awe.

 

Many of you know that on the Hebrew calendar the first day of the new year took place on Monday, the 17th (beginning at sundown of the evening before), and that the ten day period following, what we refer to as the Days of Awe, culminates on Wednesday, the 26th, with the Day of Atonement.  While I am not particularly religious or observant, I am nonetheless affected by what strike me as the ethical and moral issues that religious milestones measure, and in this case, at this time in particular, I am thinking about what fills me with awe.

 

In this ten day period we are supposed to be highly introspective, and use the opportunity for a serious review of how we spent the year that just ended and a contemplation of how we plan to spend the year that lies before us.  The standard greeting at this time is "May you be written down for a good year," reflecting the mystical belief that there is a book of fate into which all of our names, and all of our futures, are inscribed.  If we believe that literally, and if we believe that we are creatures endowed with free will, it is hard to imagine just what effect our behavior or the behavior of others will have on our futures.  But I don't think it does any harm to enter into a periodic review of the choices we make and the actions we take, and this is as good a time as any to conduct that review.  We are supposed to forgive debts owed to us, smooth over disputes we have with other people, and, essentially, enter the new year fresh.

 

For me the past year has been one where I believe I didn't have a great deal of choice, and if I did, I would not have chosen the year I have had.  Except for one important thing.  Because of my illness and my ongoing needs, I have come to learn how extensively goodness characterizes the people I have known--people I have known well or slightly, and people I hadn't known at all before.  From all corners I have received encouragement, assistance, generosity, affection, genuine concern, patience, and services.  My best friends have been like sentinels, ready to spring into action at the slightest indication that I needed something.  Friends of less intimacy have been no less generous; in fact, in some cases I have been left astonished at how faithfully I could count on some people I hadn't before known all that well or thought of as especially close.  But I was proven wrong over and over.  My family has been indescribable, and they have risen to the challenges with energy and devotion that are inspiring.  The medical people I work with, who could, if they wanted, see me as one more medical record number, are unfailingly positive and patient, and go out of their way to see to my comfort and well being.  The support group I attend is full of people like me, dealing with realities we never thought we'd have to face, but sensitive and responsive to the individual needs and conditions of the others in the group.  This one important thing, this newly found and consistently reinforced reminder of the essential goodness of so many people, is what fills me with awe at this particular time on the calendar as well as all the other weeks and months of the year.

 

I am approaching the first anniversary of my diagnosis.  I have come through it, so far, with a lot of success, but I know I have a long way to go.  I have several goals, some of which I have to admit to myself I will not see fulfilled.  But I am working again a little, writing some, playing my piano a bit now and then, reading voraciously (I couldn't read at all until around March, I think), dancing, playing bridge, and traveling.  Today I am going to fly across the country to visit my oldest childhood friend in Oregon.  I recently saw an old friend who expressed some genuine surprise that I was up and around, driving myself where I needed to go, looking less dire than I did when he last saw me in the winter.  All of that is good.  Tuesday was Dylan's second birthday, and when we called (not because he knew it was a special day, but because we did) and sang "happy birthday" over the phone, he very clearly said, with prompting from his parents, "Hi, g'amma.  Hi, g'ampa."  Someday I will hear him say "I love you, Grandpa," and some day I will read the paper on which he writes those words.  Goals worth striving for, and made all the more realistic by the outstanding care I am receiving from all the people I mentioned above.

 

So in these Days of Awe I reflect on the year that has passed and what I think lies ahead for me, and I conclude that with all your help and good wishes, I have no reason to doubt that where I want to go is where I will go.  If you, my friends and family and medical team, don't fill me with awe, I just don't know what will.

a bit of a hiccup

We went in this morning for our fourth-of-four chemo infusions for this cycle, but the preliminary blood draw showed that the white blood cell count was too far below normal for the treatment to go forward. Normal range is 4.5-11.0 of whatever units it is they count, and Steve's reading was 1.8. The nurse said this is not surprising, because white blood cells are generally hit hard by chemo treatment, and a rest from the chemo will probably result in their making a good comeback. Since we had two "off" weeks coming up anyway, this day off will result in a three-week recovery period, so the reading should likely be fine next time. Meanwhile, we still have the September 17 CAT scan on our schedule—the results of which should give us an idea of what progress the chemo has been making against its actual target.

I expect it will be a few weeks before there is further news. We won't get the CAT scan report until after our short trip to Oregon in two weeks. Possibly Steve will have something to add to the annals between now and then, but I will most likely check in again sometime in the range of 9/26.

Thanks, as always, to everybody for your support. Take care of yourselves.

--Carol

Still moving on

Our weekly blog-entry pattern seems to have stretched itself out a bit.  I had thought Steve might be doing the next entry, and he intends to do so again one of these days, but meanwhile here's a short update for anyone who is still checking and might be wondering how things are going. J

 

The second and third installments of this four-installment chemo round have been successful (that is, the critical blood counts have been in good enough ranges so they could go forward), though Steve's energy level has remained generally somewhat lower in these past two weeks than it had been recently.  He has been trying to get by with more food by mouth and less time on the feeding machine.  He likes the freedom from the machine, but his weight has continued to drop—so some reversal of that pattern may be necessary.  Yesterday he ate pretty well and used the machine overnight, and this morning we were both pleased to note he was back up a couple of pounds.  Next Wednesday is chemo #4, and then after a week off we get another CAT scan to assess the progress of the chemo vs. the cancer.

 

We are relaxing at home over Labor Day weekend. (Steve is napping now.)  I have been busy with the start of school, which seems to be going well but keeping me busier than I expected, for some reason.  We've enjoyed a bridge group evening and have another coming up soon, and will soon be rescheduling the playreading group that got canceled when we went to Flint.  In September we plan to visit Eddie in Oregon, and then for October we seem to have (tentatively, at least) scheduled out-of-town activities for every weekend of the month. In addition, Steve has scheduled himself for at least a couple more teacher-training programs, and is in touch with his textbook co-author and their publisher about some further work in bringing their texts to online format.  All of this scheduling clearly shows an optimistic attitude going forward. Our total schedule for the next couple of months looks to me challenging even for normal circumstances, so I guess we had better start storing up our energy now!

 

We've also had regular as well as irregular visits with many friends, and it continues to be true that social contacts are highly therapeutic so we hope you will all know that we are always happy to see you—please don't take the above paragraph's crowded-schedule content as a suggestion to stay away!

 

We hope all is well with all of you, and we thank you again for your support.  Enjoy the last bits of summer.

 

--Carol