DA Meeting

Hi. My name is Maestro! I am a diabetic.

Sure, here we go. Four times a day with the glucose meter and a graduated scale of insulin. Of course this is a result of compromising the pancreas. Between the tumor and the double chemo assault, what would one expect?

I was spiking as high as 320 after meals so there was little choice but to begin insulin treatment. Again, this is no particular problem for me. These are pretty minor pokes and shots. But add that to the other things that have to be tracked and it has become a full-time job.

So here's the irony: a month ago I was juggling a dozen balls at once, working day and night redecorating a room for Kris, and taking a multi-vitamin and a baby aspirin each morning. Today I am living in lounging pants, worrying about what I can eat that will do minimum damage, and have a full kitchen cupboard full of meds, needles, syringes, alcohol wipes, and medical gizmos. I am amongst the fallen.

Series II, day 1

So, my second series of double chemo began Monday. The infusion was at DRMC. The routine: 9 a.m. appointment; blood draw for the lab; sit with the saline drip for about a half hour while the lab does their magic; get the lab results to approve the procedure; get the pre-infusion goodies (a long lasting anti-nausea and some joy juice which was described as "a type of steroid"); wait for a half hour before the infusion can start (actually, wait for Pharmacy to send up the Gemzar, which took longer than the half hour); when the infusion actually starts, it only takes a half hour to complete; done by 11 a.m.

As before, the pre-infusion drugs are effective-- I felt fine, actually a little jittery and had a tough time sleeping. But otherwise fine-- still true this Tuesday morning. The crash will come and I was warned that it would likely be earlier than before since the pre-infusion was different from that received in Findlay.

But a new problem has arisen-- my blood sugars are up quite significantly. So I have an appointment with my GP this afternoon to address that. Insulin anyone?

Periodic update

The weekend was pleasant. I continue to feel fine in the mornings, with a good appetite. As the day wears on, the appetite slips. But we were active.

Saturday we toured around some of the furniture emporiums in the greater metropolitan Defiance region (Okalona, Bryan, Edgerton, Hicksville) looking for a dinette for Kris' house--and I did the driving. Kris drew the short straw on that on-- one of the four chairs in the existing set has a broken back (lifts right off if you try to move the chair) and that became hers! So we offered to replace the set. Couldn't find exactly what we wanted but settled on one right here in Defiance and it will be delivered on Tuesday. It is round with two, twelve inch leaves.

Yesterday we had built up quite a grocery list, including some things that I hope to be able to eat later in the week when I get beat down again. So we shopped. Told Emily later that it wasn't really all that pleasant of a trip as I saw a lot of things I have always loved that are not likely to be a part of my diet again. Drats.

Soon I will be off for my second Gemzar infusion. So the second series begins.

Happy Christmas

Merry Christmas, gentle readers. The time before Christmas was busy, even here in a house preoccupied with other matters. I managed to run the rehearsal for Lessons and Carols and attended the annual choir party. Though it was not held here for the first time ever (I think I have been doing the UCC choir for about 30 years), everyone had a great time. Our son, who arrived that evening with our son-in-law, noted "it was like one big family." Indeed we are, and an irreverent chuch family as well.

Yesterday, our "boys" spent the entire day (having put in a long night before) working on our computers, finishing the installation of high speed cable, installing a new wireless router, and putting a "Roku" device on our living room TV. This allows Netflix subscribers (a present from our daughter) to access a huge catalog of free movies. Including a lot of TV series. This all comes over our new high speed, can be paused, restarted, replayed--great! That is good as we cannot usually stay awake long enough to do a full-length movie in the evening. While we were at it, we replaced the world's largest (and heaviest) 36" tube television with a 32" flat screen. Simplified the wiring between the set, the DVD player, and the tuner, and pulled the VCR out. Technology marches on!

Today we are alone, with the entire family now gathering at Andy's Frankfurt house. But weep not, we have Skype. Today, we have already seen many of the gifts at Beth's, the baby in her Christmas outfit, and Andy in his Santa hat. As they gather for snacks and presents this afternoon, Skype will let us be a part of the celebration. We would love to be there, but as that is impossible, this is a pretty darn good substitute.

As you can surely tell by by topics this morning, I am feeling pretty good on day 12. Appetite is good, particularly until late afternoon, can get out and move around well, but tire quickly. Worked in some sitting time last night at the service when others stood, am inclined to take a couple of naps during the day, and just need to pace myself. But I have enjoyed these days.

Peace and joy, love and health, to you and to your loved ones.

Any day that includes McFries

This might seem much of an evaluative matrix to you, but in my educated (but chemically steeped) brain, anyday that you can enjoy a small bag of McFries with a whole lot of catsup (not to mention the two Mcburgs) is a good day. You won't convince me otherwise. And that was after a breakfast of two eggs/ham/cheese, all fried together with a side of a small bagel! Guess you know that today has been good.

Spent some time at the church, getting the choir folders ready for the 11 p.m. Christmas Eve Ceremony of Lessons and Carols. The rehearsal is tonight, followed by the annual choir party. I hope to be able to run the rehearsal, drop in on the party, and lead the service tomorrow night. If I am still awake at midnight Christmas Eve, that may well be the next miracle--as we have been going to bed at 9 or 9:30 p.m. all week.

Clearly, the chemicals are leaching out-- and I still have 4 (four) (FOUR) days left to enjoy before they hit again. As I mentioned to someone today, if this regimen would have the desired outcome, I could live (LIVE) with this.

Miracles again

Well I think there was another miracle-- they are, it appears, in the eye of the beholder (I assure you this has nothing to do with Mary and rusting silos). Most of you know that I continued to do several things with music at DC after I retired in 2004. All the time saying to the DC leaders that we needed to get a full-time musician on campus. Because of a funding initiative a year ago, enough money was raised to make this possible--beginning just this fall. Not only did we have the funds and the interest, we had the perfect candidate: well trained (2 undergraduate degrees, 2 graduate degrees); well known in the community (son of a former mayor and prominent local family); young and energetic (seems really young to me and with boundless energy); interested in working into a career in college vocal music; and AVAILABLE. I have often told him that the "stars aligned" just for a moment. So he has already taken over many of the things I had been doing for years and is poised to take over many more. So explain that one.

Periodic update

Well my first day of "off week" wasn't all that good. The last dose of Xeloda kept me feeling pretty punk all day. Because I didn't start (didn't even have) the med until afternoon last Monday, I was left with one dose to take. Think I will jigger that and start it on Monday a.m., before the Gemzar infusion. Then I can truly get up on Monday of "off week" without facing another dose.

But today is better! Think I will be able to eat and perhaps get back some strength, maybe even some of the weight that is obviously peeling off. We have some Christmas preparations to tend to, as we will be alone here over the holidays. Our original plans to travel to New Lenox and Frankfurt IL, had to be dropped as traveling while fighting bloods clots in my legs doesn't seem wise. And I really need to be near my caregivers. Kris will be picked up by her Dad tomorrow and spend the entire week between the holidays at home.

One of the things that has surprised me is the number of friends who have been through cancer care and who have come forward to offer suggestion on what worked for them-- foods, strategies, nonpatented remedies, inspirations, etc. It is good to have those. Particularly pleasing was a young associate and fellow horn blower who called to offer an unsolicited endorsement of Dr. Muler, made all the stronger by the fact that her mother is a longtime, high ranking administrator of DRMC. Nice.

Off-week arrives

Monday morning, clear, snowy, Christmas week, beautiful. I just took my last oral dose for a week. A friend and "gentle reader" suggests that I stop calling them "Devil Pills" as we are hoping they will be an important part of my therapy--well put. So how about "Silver Bullets," or just SBs. That shows a level of respect and the opportunity to reverse on them if they turn out to have just been torturers. It would start with "Sonsa..."

I continued my first week of treatments with similar results--relatively good mornings with a crash late in the afternoon. We managed to get out to buy some bird seed, stopped in to see Kris, got some fresh air. When I am feeling better in the morning I can generally eat several, small "meals." But it gets more difficult as the day progresses. I do have nausea pills that help a good deal. All-in-all, it was not a horrible experience.

So off we go into my first interim week. Certainly hope that it can be enjoyed.

Miracles on the way

Well, Saturday, a little snow which is beautiful. But Emily is worried so she has already shoveled twice. I feel a little better than yesterday, I suspose the Gemzar continues to wane.

I know that many of you are probably looking for miracles and I sure don't want to discourage you from that. Thought you would like to know there have already been at least three:

1. This was the year for the Madrigal Feast and it was scheduled for the same weekend as the Messiah performance. It became clear early on that we were not going to have a crowd, for a variety of reasons--so it was cancelled. No the economy is not the miracle, but the cancellation surely was. I would never have been able to do it. Managed the Messiah, but could not have done them both. As our dear friend, Randy, said, "someone knew."

2. This all happened just as Kris was moving into housing. As you know, we have had her here two years working on this. She literally moved just as it would have been very difficult for her to be here. She is happy as a lark, we are thankful.

3. Some of you know this story already. Last summer, I had a nice pile of cash fall into my lap from a Wisconsin State retirement account that I didn't even know existed. It will take the sting out of the extra medical expenses. As a matter-of-fact, I think I will challenge young Dr. Muler to keep me alive long enough to use it all.

How did you spend your Friday morn?

So I got to spend some time with my new Oncologist, Dr. Jeffery Muler, this morn. Actually way more time than I had planned. He accepted the regimen that had been set by Dr. Saab and carried on by Dr. Cole-- said it was a tried and tested one that should yield some good results. He gave me a good checking over and scheduled my next infusion for a week from Monday, my next check with him for two weeks from today.

But then we talked about my lower legs-- I had been having some stiffness and pain there almost from the beginning, maybe before, I really can't remember. So off for an ultra-sound. A nice thorough check revealed some blood clotting--already--apparently a result of the disease not the drugs. So now I am on a self-administered, injectable blood thinner, Lovenox. He preferred that over Kumidan, which requires liver function checks and is more difficult to stop. Since I had given Emily allergy shots for years, I handled it like a pro! Just one problem, however.

Turns out I was way too kind to the Blues. The oral med is covered by Medicare, not Part D. That is good, because it is 100% coverage between Medicare and our supplemental. Lucky thing, $3000 a month.

But the Lovenox falls to the Blues-- and it goes into a tier that has about 27% coverage. Of course that is after the deductible and donut hole. Looks like it will run $1200 plus a month.

Got home from an 8:30 a.m. appointment at 12:30 p.m. But gave me a chance to see Dr. Muler in action-- he kept me there until this was resolved, I had been trained, and had my first injection. Good man!

Periodic Update

So the first two days really weren't bad. But let me tell you about the third--err--I don't remember anything about the third. I know that I was in the recliner, remember Emily getting the heated blanket for me--remember thinking that I should probably try to stay awake-- remember going to bed around 9 p.m. and I remember many trips to the BR. I was in a complete stupor most of the day I guess.

I feel better today, ate a good breakfast, took the Devil Pills.

I knew going in that a big part of this was BMgt. (as in BM). It gets to be really important! The last thing you need is abdominal cramping. So it is like the old prune commercials-- "Is one enough? Are two too many?"

Some good news: the Blues are covering the oral med.

Some bad news: we are dealing with a very agressive tumor here-- in the two weeks between diagnosis and chemo, the blood test tumor markers doubled.

Friday I have an appointment with Dr. Mueller at DRMC. Hope we hit it off well, I have a few questions. So my care will be transferred there, a much better arrangement. But I must tell you that the folks at Findlay are some of the most compassionate and caring that I have met since my good experience at Henry Ford Hospital. I don't know how they do it day after day. Saints, all of them.

How I got here, in case you are interested

So I had a complete physical exam in mid-October. Flying colors. Normal blood work including liver profile, a cholesterol count most of the nation's citizens would envy, and a glowing pronouncement of "robust, good health."

Well, a few weeks later I realized I was feeling a little punk, but we were working day and night to redo the bedroom that our granddaughter Kris was preparing to move into--in a group home. So I thought I was just working too hard for an old man. Then I realized that I was starting a bout with diverticulitis, something I have been having infrequently over the past several years. Since it was near Thanksgiving and we were expecting our daughter, Beth's, family, I decided to try to get past that before I went in to be checked. No such luck.

Monday before Thanksgiving, I began to have some ample rectal bleeding and that got me to the Doctor fast. Since Dr. Barnett, my long time physician and theater friend, was booked, I saw his partner, Dr. Winner. He assumed that my self diagnosis of diverticulitis was likely the answer, but being less familiar with that history than Barnett, he recommended a CT scan to be sure. Then I went home. When the bleeding continued, I was alarmed and he agreed to admit me for a colonoscopy and stomach scope. Those proved to be negative, confirming that I had just let the diverticulitis go on too long. But by then, the CT film was read, revealing tumors on the pancreas, liver, and surrounding tissues. A liver biopsy confirmed that the original tumor was pancreatic.

So Dr. Bob suggested that I go to the James Center at OSU. I did-- and after spending an entire afternoon in various waiting rooms, being interviewed by nurses, a PT, and lots of schedulers, I was with Dr. Saab for perhaps 6 - 8 minutes. He said that, though I could not qualify for any Trial because of my recent prostate cancer, he could recommend a vigorous protocol that would take advantage of my lack of symptoms and my good general health. He said he had checked and he did not know any of the Oncologists practicing in Defiance. Instead he referred me to a Dr. Sharon Cole in Findlay.

So I was there a couple days later, on a Saturday afternoon. She is a gem-- wearing levis, well worn boots, and a Tshirt, she sat down and talked to us for 15 minutes. A young, charming, and genuinely disarming woman. She basically agreed with Dr. Saab's recommendations and said they discussed patients nearly everyday by phone. But she said, "I know someone in Defiance, respect him, work with him frequently, and think you will like him too." So, though I had my first infusion in Findlay, I will likely meet Dr. Mueller on Friday and make arrangements to be transferred to DRMC, here in Defiance. Emily doesn't drive out of town, so the hour and half to Findlay would have required volunteer drivers-- this will be much easier for both of us.

That's my story, and "I'm sticking to it."

So here's what they are doing to me

For those of you who are clinically minded--
Gemzar in an IV drip, every-other week. It takes about 1 1/2 hours to get this done.
Xeloda, an oral med, seven days, then seven days off.

Gemzar is the "gold standard" for pancreatic cases, has few and mild side effects, and a record of "good survivability." I figure any survivability is good. Xeloda has more side effects, but all are manageable.

Right now, there is a serious conversation going on between Blue Cross/Blue Shield (our Part D coverage) and my Oncologist about Xeloda. I will be surprised if the Blues approve it. But between the $375 a year deductible, the 25% co-pay, and the "donut hole," it would not be too upsetting to hear.

Welcome to my blog-- bet this caught you by surprise

So yesterday, 12/14, I had my first chemo treatments for my new position-- cancer patient. One minute busy conductor, executive director, music director, entrepenuer-- the next, cancer patient. I think this is my most challenging, and certainly, last job. It is not the one I would have chosen, but here it is nonetheless.

And it is really an easy job so far-- I have yet to feel sick, pretty much my old self but for needing a nap mid-afternoon sometimes. I know that won't last but I am enjoying it for now. My appetite continues to be good and I am indulging myself with some foods that I had forbidden from my diet so I wouldn't die of a coronary before my alotted time. No longer think that is much of a problem.

I plan on spending some time on this blog each day but you have no such obligation. If it gets too clinical or gross, wipe it off your machine. If you get some perverse pleasure out of it, read on.