Just stopped by to see what condition my condition was in!

It has been an event-filled week for Megan. On Monday we went to Moffitt for the final briefing on what would be happening for the rest of the week. Tuesday was the ‘Wowza Chemo;’ this is the one that was going to get rid of everything in her blood in preparation for her transplant on Thursday. The chemo made her very tired but the next day she bounced back like super woman and was walking around, taking the stairs and generally defying all the odds, as is her wont.

Thursday was the transplant day, David took her to Moffitt and I relieved him at 10:30 so he could get to work. Meg was in the bed for about six hours as they made sure all was going well with the various drips she had working. About eleven they were ready to administer the three bags of her own cleaned-up stem cells, and each one took about fifteen minutes to drip back into her system. I was blown away with the security protocols to make sure she was getting her own cells. The tech would bring up the bag and the nurse would read out Megan’s name, birthday and patient number. The tech would then read the same information he had on the bag. This was done with each bag. They had ‘relaxed’ Meg before the procedure and she spent most of the time drifting in and out of sleep. 

Cindy came at about two and by three thirty we were able to leave and get Megan back to her apartment where she went right to bed for a few hours of much needed sleep.  They talk about the day you get the transplant as your new birthday; they make a big deal out of that and every one of the nurses came by to wish her a happy birthday. While Cindy held down the fort at the apartment, I went to the store and got lots of water - she drinks about 80 oz per day - as well as a birthday Key Lime Pie, some balloons, and a birthday card for the three of us to sign and give her when she woke up. 

Now it is all up to her body to start to do the right things and rebuild the immune system. It is no fun for her:  constant feelings of exhaustion, nausea, and dull aches. She says it feels like she has a bad case of the flu after having flown for twenty hours. We all try to make sure she has protein, exercise and rest; those are the three biggies for this procedure.

When David takes her to Moffitt in the mornings at seven, we go over to the apartment and strip her bed, wash the sheets and any clothing she had on the day before and sanitize the bathroom and kitchen. For the first two days after the wowza chemo she was what we call radioactive. Anything that she had touched or touched her had to be well cleaned. We had to wear double sterile gloves when we removed her sheets and clothes and when I cleaned the bathroom. I know it was my imagination but after the first such cleaning session I too felt nauseated. Now the routine is not as stringent but we still need to make sure that everything is clean and neat since her immune system is at this point non-existent and we have to make sure she is not exposed to any nasty germs, bugs or bacteria.

Through it all, Megan has been Megan, worried that we are bored, wanting to make sure we are eating, worrying about David and her son Blake. We try to gently tell her that all she has to do is worry about herself and we’ll all take care of each other.  What a gal!

Cindy and Wm

About to Tackle Toilets

Arrival in Florida

We have been in Florida now for a while and have settled into a bit of a routine. We are staying at a Hilton Garden Inn which is a five minute walk from Megan’s apartment. She has lovely digs:  two bedrooms, two baths, great kitchen, washer/dryer in the apartment - all well laid out and stylish with more TVs than I’ve ever seen in an apartment. She has added some personal touches to make it feel more like home and she seems more than ready for the next big push. Last week they inserted a port in her chest where they will feed all the meds and other things that are best not discussed. She was in horrible pain for a few days but it is better now and she is happy that they have given her the all-clear for the next phase. 

Our digs are a bit more modest but just fine for what we need. We have a junior double suite that has a little fridge, microwave, TV, couch and desk with a small round ‘dining’ table. There is a separate room with two double beds and another TV. Like I said, basic for a month of lodging but enough space so that we don’t go stir crazy. The best part of this hotel is the staff. They are universally friendly and helpful, and I feel like we could ask them for anything and it would be done. They are genuinely concerned about Megan’s well being and ask about her almost every day. This hotel, unlike lots of others in the area, has a bar and restaurant, both of which open at 5 pm, which is swell since there really isn’t anything within walking distance and nothing worth driving to at night.  We know about the staff members’ kids and their lives outside of the job, and it does feel a bit like staying with an extended family without the crazy uncle or aunt!

Our drive down was without incident and our car, DVDV, performed beautifully. We drove almost the entire length of I-81 with the Blue Ridge Mountains our constant sentinels watching over our passage. Dropping down into North Carolina on I-77 presented some of the most spectacular views I’ve ever seen, but I couldn’t look that long since the driving required lots of attention. At one point we passed acres and acres of pumpkins that were ready to be collected. I don’t recall ever seeing a really large pumpkin farm and it was exciting to behold. The driving was easy and not too much traffic, except for the last ninety minutes or so where we hit construction and rush hour. This proved to be the case for each of our overnights, easy for the first five hours and then a pain in the butt for the last hour or two. 

It was cool and crisp when we arrived at our hotel in Rock Hill SC. There were about six hotels within spitting distance of ours; clearly Rock Hill is between places of interest.  We took a long walk around the shopping mall/car dealership/hotel circle, just to stretch and look for a spot for dinner. There were all the usual suspects about fifteen minutes from the hotel: Applebees, two steakhouses, a Japanese/Chinese restaurant and some fast food joints. We ended up walking over to a Holiday Inn where we had a quiet drink and a very acceptable dinner, which was more like lunch food but well made and fresh. 

Next morning we were up and out after a nice long walk/run and a good breakfast at the hotel. Zipped though South Carolina and Georgia and enjoyed the ride since there is a lovely variety of sights, birds, and glimpses of marsh, ocean and bays. We hit lots of traffic approaching Jacksonville and even more on the ring road but eventually we zipped into St. Augustine just as the 15% chance of rain became 100%. What a difference in temperature!  We were cold in SC and it was 86 with 100% humidity in Florida; I loved it.  We changed into our Florida clothes and, the rain having stopped, took a lovely long walk along the water while keeping an eye out for good restaurants. St. Augustine is truly a lovely city, the oldest in the USA, and well kept and well presented. 

Dinner turned out to be fantastic.  A little modest fish joint, wooden tables, quite small but staffed with some of the most genuine and competent young servers and cooks. We shared a starter of deviled eggs topped with fried oysters and nested on a bed of bacon and tomato jam that was house made. Cindy had two fresh snapper tacos and I had fresh broiled snapper on top of risotto made with baby kale, corn and garlic. The fish was topped with fresh greens and cabbage and it was certainly the best food I have had in a while. The restaurant is called Catch 27, for those of you heading to St. Augustine who may want to take note.

We had thought that by pushing ourselves for two days the last leg would be a walk in the park of only three hours, but it was not to be.  We departed the hotel and almost immediately it was stop-and-go since there were about 250 bikers parked on the main drag, which had been reserved for them. I guess there was a big event that weekend but it was slow going, and just when we thought we had made it out, we discovered that we had left our big Rand McNally road atlas at the hotel so we had to double back to pick it up and go through the biker gauntlet once more.  Once on the open road the section to Daytona Beach was a breeze until we got to the cut-off for I-4 which crosses the state from the ocean to the gulf. The interchange was a mess and difficult to maneuver, a harbinger of things to come. About 30 miles outside of Orlando things began to collapse due to construction and volume; my goodness there were a lot of cars. We crawled through Orlando as I cursed Walt Disney for having started this all. It took an hour to go about twenty miles and the traffic never really thinned out until twenty miles beyond the Disney World exits. Our little three hour trip turned out to be four and a half but we were happy to be pulling into our Hilton a day early so as to be here for Megan.

This week will be filled with activities at Moffitt so I’ll be focused elsewhere. More when the big stuff is out of the way for Megan.  Ciao, Cindy and Wm

Off to Florida

We had a whirlwind visit to Tampa, arrived on Sunday, trained at Moffitt all day Monday, and back to the airport on Tuesday. My goodness, there is a heaping helping of knowledge required to be a caregiver. We departed with lots of good information and tons of materials for us to read, research and memorize. We are here at home for a few days before packing up the car and heading back to Florida, this time for a month or more.

Speaking of the car, we decided it would be better to drive our twenty-year-old Explorer since it will give us the most flexibility getting there and also while we are there. The car has only 88k original miles and it has been well maintained, but I wanted to bring it to the shop for an oil change and checkup. We have been going to the same auto maintenance shop for ten years so they know the car well and they promised to give it a good going over.  For the most part, it passed with flying colors but they did find that the spark plugs and wires were original equipment. They were amazed that the car was still going. It took them awhile to get them out, and my goodness but they were a mess. Everything is in working order now so we’ll hit the road with a greater sense of confidence and a lighter wallet.

Here is a photo of the day we took Divi Divi home. The name comes from the color of the car which is Desert Violet, DV, like the Divi Divi tree in Aruba.  You will note that the only thing in this picture that looks the same is Cindy!

Our Eddie Bauer Explorer

Tidbits from Road Trip

Trip tidbits that didn’t make the blog the first time around …

One of the things we were looking forward to on our trip was a visit to Wall Drug which Cindy had visited in the 60’s on a road trip with her family. I had heard about it for years and it turned out that the anticipation was much more exciting than the actual visit. We saw our first billboard while still in western Minnesota and it promised free ice water in just 303 miles. The closer you get the more frequent the signs, and they are all really quite clever and provide a great diversion from the endless flatness of the terrain. Upon arrival we were met with a tacky, crowded set of commercial shops filled with busloads of tourists with their names and addresses hanging from their neck along with the bus number so as to be sure they all got home after shopping for all things Wall Drug. Cindy remembered it as being not as coarse and of course when she was there the interstate had not opened so it was not nearly as large or crowded. We lasted about twenty minutes before mercifully placing it in our rearview mirror. The worst part was that I didn’t even get my glass of the promised ice water!

And speaking of billboards, South Dakota seemingly has no restrictions on the location or frequency and they practically blanket the roadsides.  Some are very well done and fun to read, such as the 30 or so ads for the Firehouse Brewing Company in Rapid City.  Every ad includes an old red fire engine, some newish (1980s?) and others that appeared to be from the 1930s or even earlier.  Every one seemed to be in perfect condition and of course was painted bright red from bumper to bumper. Another set of clever billboards advertised a local Mexican restaurant:  “feed me tacos and tell me I’m pretty;” “Mexican food so good Trump would build a wall around it,” and “Mexican food, local water.”  Ha.  

North Dakota apparently limits billboards to a mile or so before freeway exits, and they also apparently have a civility campaign going on.  We saw several billboards with just two words in very large capital letters:  BE NICE - or - BE POLITE - or - BE KIND.  Given the length of our daily drives the diversions were nice, but in the end just looking at nature was preferable.  

After leaving Yellowstone and spending another night in Billings, we headed for Bismarck and arrived much sooner than we had expected.  It took only five hours instead of the six we thought it would be, so we tried to cancel our reservation so that we could drive another few hours to shorten the next day’s trip. No dice! The hotel industry has now made it impossible to be spontaneous by requiring a 48-hour cancellation. The travel industry does all it can to nickel and dime we the consumers, and we are seemingly helpless. I’ve had to change flights to Tampa twice and each time they charge $200 a passenger, no exceptions, and then if they feel like it they will also charge more - for the difference in the ticket price from when you purchased it to what the going rate is now, and there is no way to figure out the going rate!  

So we stayed in Bismarck and used our newfound time to walk a bit around the campus of Bismarck State College. It was cold and windy and there was some spitting rain, but we were thrilled to be out of the car and into fresh air and exercise. The campus is quite new and very modern and we enjoyed our excursion. That night we walked across the street to a sports bar and bellied up to enjoy the five TVs over the bar which were showing a playoff game between the Twins and Yankees. As we munched on potato skins with the works, along with the largest pours of booze in the West, we marveled at how we could be almost anywhere in the USA.  We throughly enjoyed the entire experience and left when the score was tied so that we could pretend that the Twins could actually win something important. In the morning our breakfast was sullied by discovering that they lost big time to the Yanks.

In seven days we drove close to three thousand miles averaging 425 miles a day. The car we rented, a Ford Edge, performed beautifully in all weathers and altitudes and there wasn’t a single time that I was uncomfortable driving since the seats could be adjusted in scores of ways and the air conditioning could be controlled for each half of the car so that Cindy could have it her way and I mine. Once our twenty year old Explorer gives up the ghost, we’ll think hard about getting an Edge. I seldom use cruise control, since I seldom cruise anywhere, but with these long, long stretches of highway it was a delight to set and forget. We had always been under the impression that you can usually go about five miles above the posted speed and be ok.  NOT in Montana! While nothing happened to us, our new found friend Christian from Bin 119 was pulled over for speeding. It seems that the police and highway patrol were dead set against raising the speed limit to 80 and therefore will pull you over even at 81. 

The one night stands played havoc with our exercise routines. Cindy always runs for 30-35 minutes in the morning and I always walk for an hour, but with long distances to cover, we were almost always in the car by eight or nine which left no time for routines. My canary pants still fit so I’m not too far gone, but it will take some time to get back in the groove.  

On the Road Again

Sorry to have been blog-less for the first part of our trip, but as you know from yesterday's blog, we ended up condensing many of our plans and that left no time for typing in a hotel room.  We are not very good at one-nighters and had planned for 2 or 3-night stays along the way, but we’ve managed well despite the changes.  The Corn Palace in Mitchell was quite interesting to say the least, even though we arrived after the birds had had their piece, quite literally.  Still lots of cobs left, however - and the effort is amazing. They do this every year, always with a different theme, and we saw some drawings that showed the pre-planning stages and where they would put which ear of corn. Who knew that corn came in such glorious colors including bright green?  I’ve seen my share of Indian corn but these colors had far more variety.

Next stop Rapid City with a tour through The Badlands on the way.  What a glorious surprise!  It’s like an above-ground Grand Canyon, or several of them - colorful layers of rock soaring skyward.  Unfortunately these absolutely gorgeous rock formations do not photograph well (the colors appear quite muted).  Rapid City was another glorious surprise - the friendliest, nicest people and a lovely downtown area with a beautiful huge park situated along the river.  We ate very well the two nights were were there, and couldn’t help but notice the vast array of on-tap beer selections in nearly every restaurant - one had 70 choices!  I tried one, a local ale, and it was very good.  I guess I’ll have to go back a few times to try the other 69.  

While staying in Rapid City we took a long day trip south to Mt. Rushmore and beyond to Custer State Park.  Cindy had been to Mt. Rushmore as a kid but I had never seen it, and it is indeed impressive when you stand right there looking up at those four noses.  The history of the construction is well presented in an interpretive center, but unfortunately the dining hall where some of the scenes of “North by Northwest” were filmed is long gone.  

The rest of the day proved to be the only disappointing part of the trip - way too much driving and switchbacks that turned my stomach, and while the park is pretty it pales in comparison to everything else we’ve seen on this trip.  We were there on the day of the famous bison roundup when wranglers on horseback herd the bison to another part of the park.  Thank goodness we got there after the big event but we still encountered lots of traffic and the only bison we saw were part of a large herd behind a fence.  Who needs to see fenced bison?  As you read in the previous blog we saw bison up close, really close, in Yellowstone Park and that was far more interesting.  Apparently in Custer State Park the animals have holidays, because they were definitely away while we were there. (As an aside, the best investment I have made was to purchase a lifetime pass for all National Parks for only $10 ten years ago. Great pass to have!)

Back to Billings, the city we meant to stay two nights all along, but two nights in a row.  Our second night proved to be really fun and interesting, mostly due to our discovery of Bin 119, a perfect little restaurant and wine bar.  We had a quick glass of pre-nap wine when we first arrived and got to know the bartender/ manager named Kari who was delightful and knew a lot about wine.  We promised to return for dinner when an equally delightful guy named Christian was in charge.  He was charming and funny and competent, and the food was delicious and served with plenty of garlic.  We made a mistake by ordering our favorite Côte du Rhône because it was an off-menu special (and well-priced) but didn’t check the alcohol level in time:  14.5%!  That is way too high; this wine shouldn’t be more than 13% or 13.5% tops.  Ah, as mistakes go I guess I can live with this one, a drinkable mistake - but we did leave a nice portion in the bottle for Christian and he was thrilled.   When he first uncorked the wine he wrote the name of the restaurant, the date, and his name on the cork - a very nice touch, and a first for us.

The next morning we ate breakfast at Stella’s, the bakery / cafe next door, and oh my what a breakfast it was!  We could choose from list of seven items that were included in our room price, from 2 eggs with bacon to yogurt with fruit, and every choice was huge.  I tucked into the eggs and bacon that came with a slab of crispy hash browns, and it was enough to get two mornings off to a grand start.  Cindy ordered the pancake with an egg and sausage, and the pancake was as big as a dinner plate and was served with a pint of syrup, yes a whole pint in a pitcher.  She drained it.  (Right.)  We avoided the cinnamon rolls which were truly as big as a small loaf of bread; first time we’ve seen a breakfast treat big enough to require a fork and steak knife!  Well-fueled personally and with the gas tank already filled, we headed east into sleet and wintry weather toward Bismarck ND.

Best to all as we point ourselves toward Tampa. We'll give you an update on all of that next week.  Cindy and Wm

Yellowstone Visit

We read that there are 1000 geysers in the world and 500 of them are in Yellowstone - well, we think we’ve seen all of those!  Most are gentle columns of steam rising skyward - and they are truly everywhere you look - but some “blow” every so often.  Old Faithful is the most famous of course and we were there to see it:  It happens regularly on an irregular basis, so to speak, every 40 to 120 minutes.  We had to wait nearly an hour and it was sleeting heavily, but saw it we did.  More interesting was the Beehive Geyser about a hundred yards away which only goes once per day and we happened to catch that one too.

Yellowstone National Park, as many of you gentle readers already know, is worth a visit.  We just stayed one night but we toured aplenty the day before and day after and feel that we saw all we need to see at this stage of our lives.  Bison and elk up close (and I mean close, 20 feet away), coyotes, cute little ground squirrels, white-tailed deer, and a bald eagle that flew about 15 feet directly above our heads - in addition to glorious scenery that changes every few miles.  We went from 78 degrees the day before to 30 degrees in the park with near white-out conditions in the pass that leads to Old Faithful.  As a man who hates winter and hates snow in particular, this was not a pleasant event!

Our accommodations at the Lake Hotel on Yellowstone Lake were comfortable but rather basic considering the price - they’ve gotcha in the park and can pretty much charge whatever they want, which they do.  But the setting is gorgeous and we had a grand time.  Solitude was a plus - no TV, no radio, no internet, not even cellphone service.  We both found the lack of telecommunications amazing as well as restful - but it is a mystery how the preponderance of Asians in the hotel managed without being connected.  It was the first Sunday of my adult life that I remember when I could be in a bar at this time of year in the US and not be subjected to the noise and bluster of various football games.

The elevation of most of the park 7,000 to 10,000 was a challenge for me - I was born at sea level and have lived most of my life very close to sea level, and gasping for oxygen is not my idea of a good time!  Not quite gasping, but it’s disconcerting to feel out of breath just by taking a flight of stairs.  Cindy isn’t as bothered but she felt it when she went on her usual morning run through the buffalo herds. Okay, two buffalo - but they were up close and personal.  

Yellowstone was to have been a stop on our way to an anniversary party in San Diego on October 14 that also included a loop over to Phoenix and up I-35 through Oklahoma and Kansas, but alas, Megan needs us in Florida so we are turning back nearly 3 weeks early. It has been hard to not be with her, but we would have just been in the way. Now, we are able to go and provide our TLC, which we are only too happy to do - turns out that being in remission, while very good news, actually means that she’s ready for the next step which is a bone marrow transplant and is a brutal process. They’ll use her own marrow not a donor’s, and therefore they will remove all of her marrow, clean it, and put it back.  Modern medicine is amazing but also scary!  She will need 24/7 monitoring so we will form a tag team with her husband so that she is not alone for even a minute. On October 9th we’ll take a mandatory daylong workshop to learn how to do this properly and then we’ll be in Florida for most of the next several weeks, at least until Thanksgiving.  

More tomorrow on our way home.  Cindy and Wm