January 28 Update

January 28, 2012—Some good stuff :)

So, it has been two weeks since the last update.  Sorry for the long-ish lapse (and the length of this post, as well!—I'm clearly an inexperienced blogger)—but for now we have some pretty satisfactory things to report. 

1) We've played some bridge in the intervening two weeks—twice at Rankins' house, where we went for short early-evening visits on the 16^th and 17^th, and once at our house when the whole Bridge Group came over (as scheduled) on Friday the 20^th.  Each time we had a relatively short evening, but it was fun to get back into some of our accustomed entertainment (and the usual Bridge Group hilarity ;->).

2) We were surprised to get a call from the oncologist's office during our "week off" from chemo to say that he wanted yet another blood test—apparently just to keep track of the hemoglobin level.  However, that one came in at 9.1 (not impressive, but still better than the 8.5 of the previous test, so a good thing).  And then when we went in for the first of the next set of three chemo treatments [on Wednesday 1/25], we asked the nurses about *that* day's hemoglobin level and it was 10.5!  So we see all of that as really good progress.  Also, the 1/25 chemo seemed to go smoothly and now, the third day after that,  Steve's energy level is still reasonably good.  (*And* for the first time in several weeks, he went in and out of the doctor's office without the aid of a wheelchair—good progress in strength and energy level.)

3) We went (after intending for a while to do so) to The Gathering Place, a cancer-support establishment with a site in Beachwood which had been recommended to us by several people.  We went together for an Orientation session on Monday, 1/23, and then Tuesday we went back and attended two separate meetings, one for patients and one for caregivers.  We were glad to have done both.  Their default assumption is that once you join the groups you will continue to show up or else call to let them know you won't be in—since otherwise they worry about you—and we do expect to continue attending.  Also, Steve is signed up for a Reiki session there on Tuesday afternoon (1/31).  We're interested to see how that works out and perhaps to see about additional sessions as they become available.

4) We went dancing (!) on Thursday evening at Springvale Ballroom, our former regular Thursday evening haunt.  It was very nice to see a lot of our dancing friends, and receive all of their greetings and good wishes.  We didn't dance a lot—a foxtrot, a tango and a half, and two waltzes, I think it was.  But that was more exercise than Steve has had since the illness really set in.  So between the exercise, and the company, and the significant pleasure of the dancing itself, that was a really important step forward.  We look forward to further outings like that, also.

This weekend, Melissa is visiting.  It's of course wonderful to have her in the house, just for her company as well as for her help in teaching us some computer skills we've been struggling with, and running a few errands for us this afternoon.  We're dining sumptuously on meals and snacks which Andrea Schnall has twice prepared for us in elegant and generous presentations.  We hope to see Margie and Ted [my sister and brother-in-law from Ravenna] tomorrow afternoon if all goes well.  Altogether, a nice weekend. 

Next week, I'll do my third week of the new semester at school (the home health aides have been very good with keeping Steve company and helping with the housekeeping in the meanwhile) and we'll continue at The Gathering Place, and we'll go for #2 of the second 3-session round of chemo treatments.  Sometime after the third of those, our oncologist has said we'll have another set of scans (we're not sure of details on that) to evaluate how the cancer has responded to the treatments.  We assume that information will help determine what the next steps are and when they'll go forward.

 

So far, so good, is our current position.  We will plan to post another update when there is significant information to pass along.  Meanwhile, to the many of you who have continued to send good wishes via email, cards, and in other ways, we extend our heartfelt thanks.  Although Steve doesn't have the energy to respond to all of these messages, he does very much appreciate them (as do I), and all of the expressions of support and affection are great contributions to his improved and improving spirits and strength. 

Thanks and best wishes to all of you,

Carol (and Steve)

Saturday Jan. 14 progress report

The day after chemo 3 was a  good one--Steve was feeling pretty strong and had a very nice visit with Bob Hanson, a dear friend and the English Department chairman who hired him at Shaker all those years ago. :)  Friday was a super-tired day (seems to be a pattern--first day after chemo okay; second day after, feeling the effects!), and it was also a bad-weather day, so we just hunkered down.  However, Dr. Verma (oncologist) called in the afternoon to say he did want us to get the blood-count test redone, because Wednesday's count was down to 8.1, and if it went below 8 we might need to go for more transfusions.  Not a happy prospect.

So--this morning we ventured out (the weather is better today) and got the blood test.  Within about 15 minutes, the tech was able to tell us that the count was 8.5.  Yay!  So, I've voicemailed and emailed Dr. Verma to let him know, but absent any contrary word from him, we're assuming we're okay with that for now.  Steve is still tired--napping again now--but we'll hope that the chemo effect may subside after a bit.  And this week coming up is our "week off," so there will be some extra time in which (we hope) he can gather some strength against the next round of infusions.

All for now,
Carol

January 11--Third Chemo Session,

Just a quick note--yesterday's followup visit with the radiation oncologist was fairly uneventful, which is seeming to be a good thing these days.  Today's third chemotherapy session also seemed to go smoothly, though (now expectedly) it took most of the day and left us (especially Steve) exhausted.  The only surprise was the phone call on our way home from the infusion-room assistant saying that the doctor had reviewed the blood tests and would like us to come in Friday to have the Complete Blood Count (CBC) done again.  Hm. We shall see what that amounts to.

January 8, 2012

Sunday, January 8, 2012

Dear Friends and Family,

I believe that you last received an update from Steve dated December 16—just after his discharge from the hospital for emergency insertion of his feeding tube.  How long ago that seems now!  We apologize for the gap in information, but we have been preoccupied with ongoing events—mainly two more emergency hospitalizations, each apparently some result of "radiation effect."   The first was in fact that very evening (coinciding with a visit from my two sisters and one brother-in-law), when he had a sudden onset of severe abdominal pain.  A call to the Kaiser advice line, and via them to our oncologist, yielded instruction to head for the emergency room.  From there he was admitted to Marymount Hospital for observation, and he stayed there until Dec. 19.  The supervising physicians concluded that the cause was reaction to the radiation—therefore "a good sign" that the tumor was shedding necrotic tissue.  The pain did subside to a significant extent during that hospitalization, though he remains on continuing dosage of painkiller.

We reported on schedule for the first chemotherapy treatment on December 28.  Melissa came with us, since she had arrived the day before for her December holiday visit.  The preliminary blood tests at the doctor's office that day showed dangerously low hemoglobin levels (I think I've got the terminology approximately right).  So, after administering the chemotherapy, the oncologist shifted Steve to the Kaiser Parma Medical Center's "Clinical Decision Unit," where they keep people for up to 24 hours while deciding what the next step should be.  Melissa and I saw him settled in his room there, and then went home while they gave him 3 units of blood transfusion overnight.  In the morning, the report was that the hemoglobin levels had not gone up the way they should in response to the transfusions, so there must be some internal bleeding.  Therefore, his next transfer was to the Cleveland Clinic Main Campus hospital (same campus as the radiation oncology office where we had *those* treatments) for observation and attempt to remedy that situation.  Again, the explanation seemed to be a sort of "collateral damage" theory (radiation sometimes damages more than just the target tumor).  They did another endoscopy and found severe ulceration in the stomach and esophagus.  I must admit I'm not entirely clear as to how much of that is attributable to the cancer and how much to the radiation.  Perhaps the doctors are, but I'm not sure about that either.  Anyway, after several days of observation and IV medication, he was discharged again on Monday, January 2.

We reported again for chemotherapy as scheduled on Wednesday, January 4.  That treatment seemed to go smoothly (though it took all day—partly because the infusion center was overflowing with folks, perhaps catching up on postponed holiday treatments?).  Since then he has been at home and hanging in there, although thoroughly exhausted most of the time.  I gather this is not unusual as a reaction to chemotherapy treatments. 

We have just had a very nice two-day visit from Steve's childhood friend Ed Kramer, who flew in from Oregon to see him.  That was a very good experience, and in spite of his fatigue Steve clearly enjoyed Eddie's company—talking about mutual friends, memories, politics…really a good visit.

Next on the agenda is the third chemotherapy treatment this coming Wednesday (Jan. 11), followed by a week off, then three more weekly chemo treatments, and then a re-scanning for assessment of the results of chemotherapy.  I will be starting back to school January 17 (with preparatory meetings and arrangements in the coming week).  We are arranging to have a home health aide come in for a few hours three days a week so that Steve won't be at home alone during all of the time I'm away.  I'm hopeful that I'll be able to handle my in-school duties in those three days, and work from home the other two, while we have so much to manage on the health-care front.

Meanwhile, our daughter-in-law Celeste has graciously offered to help us with the keeping-in-touch aspect of this adventure by setting up this blog to which we invite you all, where from here on we will post Steve's health updates as the news becomes available.  That way, you can check for postings any time you wish, and we can post briefly and more often rather than waiting until we get a lot of information or enough time to send out messages to several groups of addresses.

So—as you know by now, the blog address is http://steveshealthupdates.blogspot.com/.  Please feel free to visit it at any time; we'll try to keep it current.  And since it is a public blog, if you know anyone else who wants to check in on him, feel free also to share the address with them.

That's all from here for now.  And it's probably the last direct message you will receive from us, at least for a while, since we will be relying on the blog to help people keep up according to their own schedules.  Thanks again for all of your supportive messages and wishes.  Steve does still check his email at the iPad pretty much daily, and enjoys receiving messages even though he hasn't the energy to respond.  You can phone if you like—if answering isn't doable, we'll let the voicemail take it and get the message later.

Warm regards and best wishes to all of you for the new year,

Carol