Back in West, By God ,Virgina

November 14, 2017

After twenty-four hundred miles, twenty-five days, three extra pounds for each of us, and a few days of not so wonderful driving, we have returned to Charles Town.  We are so happy to be home but even happier that we were able to be with Megan for her treatments. Cindy did most of the heavy lifting while we were there.  After three days of my wearing surgical gloves to sanitize the bathroom, my hands broke out and the nurse said I was allergic to the non-latex gloves. Cindy then had to do all the glove-related cleaning, convinced that I had somehow managed to will my outbreaks.  (From CCE - I mean, really, can you believe this?  Allergic to non-latex gloves?  Gotta admire his cleverness.  HA.)

I did take responsibility for shopping and cooking and I’m proud to say that Megan might be the only cancer patient at Moffitt to have gained a few pounds while going through all the treatments. There were nights when she just had to force herself to eat, but eat she did. They wanted her to have lots of rest, exercise, and protein and she willed herself to do it all and the results have been spectacular.

It was hard to leave her but we know she is in excellent hands with her family. Our first day on the road didn’t start until noon so we only drove about four hours, but it was a very interesting drive. We went northeast and through some very interesting “old Florida” towns.  We were amazed at one point when the area we were passing seemed to look more like the wealthy horse country of Northern Virginia.  Large parcels of land with lots of horses and what looked like actual hills in Florida. Snug up to these estates were tracts of trailer parks and acres of manufactured houses. Lots of contrast to be sure. 

We stopped in Brunswick, Georgia for the night and there was a really wonderful restaurant in our hotel, which made us doubly happy since it was raining. I had the best piece of fish on the whole trip. The next day we decided to be tourists for an hour and drove over to St. Simons Island, which is well known in the area and a bastion of enclaved wealth and gated communities. There are large marinas right on the Atlantic Inland Waterway and they were filled with really, really large vessels. We drove around a while but didn’t see anything since all the cool stuff is behind gates and on private roads, so we headed north.

Interstate 95 continues to be a road that I detest, but we had very little choice.  It is only two lanes through Georgia and South Carolina and the traffic was horrible. We thought that the trip would get easier once we were off 95, but approaching Charlotte it became a parking lot. Our trusty but ancient GPS found a way around a horrible accident and we only lost about an hour before getting to our hotel. The last day of travel was a breeze for which we were deeply grateful. 

Megan continues to get stronger by the day and is so very happy to be in her own home. It is cold here, but I actually turned on the fireplace and it is warm and comfortable in the living room. Cindy has a concert this weekend and is up to her neck with practice and rehearsals. I’m happy as a clam getting everything ‘winterized’ and doing mundane chores, shopping and cooking. All is well.   Best to all, Cindy and Wm

Ode to Joy, Part Two

Dearest Friends,

You by now know that we are in a state of bliss.  Megan has received a clean bill of health and was discharged this afternoon, one week earlier than anyone ever expected.  She is in good health, good spirits and ever so positive, which is what got her through all of this.  We thank all of you for your prayers, positive energy, thoughtful cards and mindfulness. It has been a roller coaster six months and now we all look to the future with great hope and appreciation for all that we have as family and extended family.

Megan and David get to go home tomorrow and she will be in the bosom of her sisters and their families. We begin our journey home tomorrow with far more energy and joy than the trip down last month.

Cindy and I shall be eternally grateful to all of you!  With love, Cindy and Wm

Ode to Joy

Dearest Friends,

There are times when even I am at a loss for words!  I’ll invoke the talents of Herr Beethoven to assist me.  Please turn your volume UP!!  Please click here.

With much love, Cindy and Wm

Urban Wildlife

In an effort to stay to a schedule, which includes some exercise, we have been getting up earlier than normal to go to Megan’s apartment to clean and organize, and from there we go on our walk/run.  Cindy normally stays within the gates of the apartment complex until the sheets that she washed can be put in the dryer and then we go back later to fold and tidy again. My walks have taken me to some marvelous little pockets of unspoiled scrub, ponds, and rivers. Not too far away is a large park, Lettuce Lake Wildlife Park, that is hard up against the Hillsbrough River which meanders for about fifty miles before dumping its water into Tampa Bay. We had a picnic there last week with all the Florida kids, and it was a marvelous time, but we only saw a snake and someone saw a gator. On my walks thus far I’ve seen a family of ducks - mom and dad had red on their beaks and the ten little ones were all dull brown and mottled for protection. There was another fowl family, wild turkeys this time, mom and dad and eight young ones, wandering around the grounds of the regional office of Verizon. There are two donkeys and one bull and three cows in a field near the fire station and there are birds everywhere. We’ve seen three types of cranes, one large white stork, at least 3 kinds of herons, a pileated woodpecker or two, a pair of Sandhill Cranes, many ducks and swans, a flock of 5 parrots, and tons of songbirds who must winter over here in Tampa.

The absolute best viewing of wildlife however has been only a few feet away from the entrance to Megan’s apartment complex. We came across what we think is a Gulf Coast Box Turtle who was preparing a nest to deposit her eggs. She had come from a pond that is about two hundred yards from where she was digging (we figured out later). We assume that she has been doing this for decades since they can live to be a hundred, and we think it used to be a direct shot from the pond to the high ground that she chose for her nest. In the intervening years housing has been built that blocks her direct path so she decided to take the sidewalk and drop the eggs. We watched her for about an hour while she dug a nest. She would dig a little with her left hind leg using her webbing as a shovel, and then swing her butt over and use her right hind leg and dig a little more. After about eight of these sessions she would urine in the hole to make it easier to dig. When she had a nest about four inches deep, she began to deposit her eggs, a total of 22. If you have any interest you can click on this link to see my video.  When she was done, she buried the eggs, cleaned the area and then took off down the road and back to the pond as we followed to make sure she didn’t get hit by a car. It was spellbinding for us. We check every day to make sure no one has tampered with our nest!

Best wishes,  Cindy and Wm

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