The Chemo Chronicles: On the Road and Home Again

Arend is moved in and equipped at SAIC (, and we are all oriented. Virtual tour of his dorm, which is at the exact center of the Chicago Loop:

We left immediately after my Herceptin infusion on the 16th. I got a double dose so I could skip a week. That went very smoothly – the port even gave up blood on the first try, and my blood counts were all normal already except for some very slight anemia. I was still a bit tired and disoriented from the Taxol the week before, but it doesn’t take a lot of concentration to sit in the car.

We stopped in Rockwall the first night (near Dallas, for non-Texans) to have dinner with Hilde – she took us to a great Italian place – with, as her boyfriend said, “real Italians” – it seemed to be the only local restaurant amid a sea of franchises.

We acquired some gadgets for the trip – first, Robert picked up a digital camera while I was at the clinic – I had researched online over the weekend – this was a Christmas present, but he knows better than to actually buy me something that complicated, and I had been waffling on exactly what to get. Thursday a.m. I discovered I’d lost a nosepad for my sunglasses, so we ducked into Walmart and got that fixed, and acquired an AC/DC inverter (some possibilities for humor there) so we could recharge camera batteries and phones in the car – also run the laptop if we so desire, and, as the salesman said when we got the car, “You can plug in a cooler for your insulin.” He was very young – we must have seemed ancient to him, or something. In Cincinnati we picked up a USB wireless card, so we can hang out online in truck stops. We actually saw a man at a gas station picnic table with a laptop and cellphone, apparently working. We used ours at Frank and Jacquie’s, and in motels, all of which, even the cheapest, now seem to have wireless Internet. I think I worried Robert when I asked if he thought a mattress would fit in the back of the station wagon – with a fridge and all those electronics, what else would we need?

Thursday night we made it to Charleston MO (does every state have a Charleston?) where I got some of the answer to a question I’d had the night before – who the heck stays in motels these days? – not tourists – or not nearly enough to support all these motels. There were 4 boats which were all gray and looked like tiny tugboats, with high pilot houses, in the parking lot. They belonged to a GPS outfit who were mapping the Mississippi. The motel was almost on the river, and near the county port. There were also several road crews.

Friday afternoon we arrived at Jacquie and Frank’s – they have a great brick and stone Craftsman-style house, made us very comfortable, and showed us around Cincinnati – I had been there only long ago, and for the Midwestern Jeweler’s Association with Dad, which pretty much keeps you in the hotel and convention center – and we all know they all look alike. The art museum has a wing with the history of art in Cincinnati – see for the virtual experience. They also took us to Mecklenburg Gardens ( – but obviously virtual food is not nearly as good as virtual art), the Thai Cafe, and an Indian restaurant. Plus munching on blackberries, bread, cheese, sausage and other delights from the Findlay Market in Over-the-Rhine, the old German neighborhood ( – even less satisfying than a virtual restaurant).

Saturday, Eric and Suzanne drove all the way from WV – 5 hours each way for Suzanne – for a visit. Frank took us to the Mother of God church (Gottes Mutter Kirche) in Covington, where Henry deGruyter, our great grandfather Otto’s brother, was a parishioner. Otto was naturalized in Covington, before going to Kanawha Co. WV with his brother Martin. Virtual tour here – – I tried taking photos myself, but even the professional ones on the web can’t capture the feel of the space. We also went to the church cemetery (moved to the outskirts some time back) and saw the deGruyter graves there.

Sunday we went to Frank’s church, St. John’s, which was founded by German immigrants in 1814 and became a Unitarian congregation in 1924 The lay leader for the service (and Worship chair) was Bruce Beisner, who grew up in Charleston WV.

We also went on a flying pig hunt ( and captured some at the Cincinnati Ballet –

Tuesday we drove to Chicago (well, Lake in the Hills, northwest suburb), to Don and Rita Helfer’s, where Rita fixed us a great dinner, and daughter Renee, husband Steve, and their little boys joined us. Robert fired up the computer and shared his Helfer research. Don is finishing a great family room in the basement of their new house, which has super views across a lake and golf course.

Wednesday we moved into a motel in Glenview and we had a great visit with Robert’s Aunt Evie, who is going on 92 and still going great guns. She took us to dinner in the lovely restaurant at Luther Village ( Thursday her daughter Priscilla came down, took us to a Greek restaurant she knew nearby – newly decorated in very Greek blue and white – and then we went down to Avers Avenue to see the house and neighborhood where Evie and Robert’s mother Lillian grew up. Now that Priscilla’s retired, we hope she’ll come visit in Texas – we warned everyone not to come in the summer, though. In the evening we made a trip to Evanston to the American Apparel, for Arend to do some clothes shopping. Friday we trekked down Sheridan and Lakeshore Drive, our old commute from Rogers Park, to Hyde Park, to visit Powell’s and 57th Street bookstores and drive through the UC campus. Through all this we did shopping for Arend’s dorm room at various places, including the original Sears, which is across the street from his dorm and the view from his window. At one point everyone in the store seemed to have SAIC move-in badges. It is an interesting experience to participate in 200+ students moving in to a high-rise in the heart of the Loop – but they had lots of volunteers and a very organized system.

Saturday night there was a reception at the Art Institute – Arend was amused that there was a jazz band in the medieval room. Shades of conference receptions at Amercian Library Association – there’s always that little thrill to eating and drinking in a library or museum.

Sunday was an all-day orientation for parents and students, and students got their Mac laptops. Finally, we went to Gino’s East, which has moved since our days in Chicago, but has kept the graffiti-covered booths and the deep-dish pizza. We were all too tired to eat much by then.

Monday morning Robert and I started our trip back to our newly childless home. We stopped in Rochelle to visit Marguerite Thomas, Robert’s high-school history teacher.

Tuesday morning we stopped at the Cahokia Mounds in Southern IL (, which has a wonderful visitor’s center that is built over part of the excavated site and has reconstructions on the sites of the original buildings, all inside and with murals of the views when the site was occupied. Then we went down the Great River Road scenic byway for a while. It is not particularly scenic, but got us off the interstate, and in Red Bud along the road I spotted a garden bench (birthday pledge to Robert two years ago – we’ve been looking ever since) that looked good. We tested it out, bought it, and then discovered it had been built by the local Amish, so we are doubly pleased.

We had lunch in Chester overlooking the Mississippi and the bridge that goes to Kaskakia, the original capital of Illinois, which is now the only bit of Illinois on the west side of the Mississippi. We ended up at the overlook by accident looking for a restroom on our last driving trip to Illinois a while back, and managed to find it again. (Kaskaskia ghost story here for those who like them – you know who you are ;-):

We crossed into Missouri at Cape Girardeau, and after that it was pretty much get down the interstate to home. We spent the night west of Little Rock, and the weather was still tolerable. Once we got into Texas, it was hot and dry, dry, dry. We were pleasantly surprised to find it was only 72 on the back porch this morning at 7 a.m.

We made the traditional stop at the Czech Stop in West and picked up some pumpernickel and kolaches ( – although their website says they been there 17 years, Gabe will remember stopping there when he helped us move to Texas in 1985 – he, the cats, the baby (Hilde, age just barely 1) and I were in the van, and got separated from Robert in the U-Haul truck. Robert and I had stopped there on our house-hunting trip, and in those days before cell phones, I figured he would look for us there as the only place we both knew between Dallas and Austin. He did – but Gabe ate the single sausage kolache they had left…

We got home by 6 last night, and I had the last Taxol infusion this morning, so I’ll be out of it for the holiday weekend – but no more 24-hour pump after this! Next week I have an MRI scheduled – that’s the one with the John Cage an octave lower, the manacled wrist for the IV, and the interesting openings for the anatomy being scanned. So the week after that we should have some confirmation of how much the tumor has shrunk. The next chemo will be something called FEC, which will have slightly different side effects, but on the same three-week schedule. That should be done around Thanksgiving, and then on to surgery and radiation, I think. The Herceptin infusions go on for a year after that. If there’s a treatment, I’m gonna have it, I guess.

Thanks to everyone for the support, the hospitality, and for listening.

The Chemo Chronicles 3

My oncologist hugged me today. Y’all know I’m not really a hugger – even of those of you who are related. But one of the joys of this experience is everyone’s great bedside manner all my doctors and nurses have been super, treating me like a real person and not just another ugly carcinoma. (Except of course the jerky plastic surgeon who didn’t even seem to see me as an addition to his income or surely he would have tried to do a better sell job. Maybe he’s living off his stocks by now and finds anything beyond Botox injections too much work. Or maybe he was just having a bad day…)

She’s cut her hair to chin-length (the oncologist). (Have I started a trend? My IT division director cut hers not quite as short as mine last week and I got a card from her that said I inspired her ;-) – she says it’s post baby-and-breast-feeding-back-to-normal look (the oncologist – the division director is almost my age). More to the point, she says she can no longer feel any tumor. I told her I couldn’t, but that I hadn’t been very good at finding it in the first place, and she said she was, and she really couldn’t find it, so there. She’s pretty excited at the progress.

After the last Taxol (should stop saying that, but it is so much easier than paclitaxel, the generic name, which I can never remember the spelling of) August 31 I’ll get new imaging – didn’t ask how drastic – not wild about another MRI with the John-Cage-an-octave-lower-and-many-decibels-louder-sound effects, while lying perfectly still with an IV in your wrist, which is suspended from a hook very much like those cartoons of people in dungeons (the wrist,
not just the IV – really!). But they say it gives a much more detailed picture than a mammogram. I should insist on seeing them. Maybe I can get a digital copy and have before-and-after for my screensaver, along with pictures of and from many of you.

The stubborn port-a-cath refused to give blood again today – I had had great hope because Kristina the chemo nurse had managed it at the end of the infusion last week (after they had drawn blood from my elbow, of course – and I mean the vein inside the bend of my elbow – I said ‘from my elbow’ to someone last week and they said Ewww! – not sure what method they were imagining and not sure I want to.) So more drain cleaner, but it only took half an hour this time. And I had learned my lesson and made the earliest appointment – no more starting after noon and getting delayed past closing.

Cool – I just found a picture and description of my pump – – for those of you who are into detail, it’s the CADD Plus. Couldn’t find a picture of the waist pack. I’ll spare you the instruction manual which is full of the usual warnings (common to hair-dryers, toasters, even non-electrical and non-mechanical devices) about serious injury and death – only this actually seems like it might be possible without doing something incredibly stupid – and then they say you can actually take a bath with it – not me – I can go 24 hours without, thanks.

Hilde shaved my head Sunday – it only took three recharges of the electric razor ;-) Since neither of us had ever done this before, it was an adventure. She quickly developed a great technique. I was beginning to remind myself of my father with the little hair I had left. Now I remind me of Star Trek or something. Am not sure which is more disconcerting – not really distressing, but definitely hard to get used to. Am considering fake tattoos for the top of my head. Suggestions? I was thinking roses – Arend vetoed a cobra. But maybe something that would coordinate with all my off-duty clothes would be better – Celtic or Scandinavian knots? (I promise any of you who might not want to be seen with me to cover them up.)

A coworker who finishes chemo in May came by Monday to be cheering – she said her hair was about two inches long now. She also said her nail polish melted off her nails while she was on chemo and she couldn’t find anyone else who had reported this side-effect. She was on different chemicals, but I don’t think I will paint my toes anytime soon, anyway. Or maybe I will – it would be an interesting experiment. I am still getting at least one comment a day on my haircut – they continued pretty seamlessly when I switched to the wig, so it is secretly amusing but I sometimes have to fight off an impulse to be honest and explain. Everywhere but work I’m in a scarf or the infamous do-rag – it’s just more comfortable.

Anyway, I should be in fairly good shape until Friday night or so – and on the upswing when we leave for our trip next week, which we are really looking forward to. Getting out of Austin in August, visiting, getting Arend started on his next adventure, will all be great. I thought I would catch everyone up before I descended into fatigue and lack of concentration – the Benadryl or something seems to make me quite hyper for the first day or so and so you get this stream-of-consciousness account. I figure I might as well enjoy the experience, especially since it seems to be having the desired outcome. Hope you find the account interesting. (I’d been kinda customizing these accounts for each of you, but find I am turning it into a mass mailing – well, ok, there are only a select few of you. Thanks for listening to me being shamelessly focused on me, and bless you.)