Little by Each

There’s a pretty good reason why you haven’t heard from me in a while… things have not been terrific… all health related. I spent a total of three weeks in-patient at Moffitt while they tried to fix the edema and the Big “D”. They cut me loose in time for the kids Jack and Jill Shower, which I really loved attending, but we still had issues… edema, “D” and CMV, which is a virus that all of us have. However, as long as your immune system is working, it stays in check. Not for me. On Monday, I was told that the CMV indicator was negative, so we’ve beaten that down. I really hate the fact that we’re fighting this on several fronts. But that’s one down.

OH, did I mention I’m in COMPLETE REMISSION!!!! What a relief to say that… one less factor to worry about!

Then there was the wedding looming over the horizon and Dr. T wanted me to spend every day at the treatment center. Again, my guardian angel, Tony was with me. He was supposed to come the Thursday before the wedding, but changed his flight and came a week+ early. I was released on Friday, in time for the rehearsal and the rehearsal get-together. Becky and Sean invited some folks to come over later (Oh, did I mention the festivities were at our house… heck, we have the room, the lanai, etc.). I went to bed before some of the people left!!! BTW, the wedding was a BLAST! The Food, Music and most of all, our friends and relatives who came from several states to help us celebrate. I’m especially thankful, not that she came… I knew she would… but for her KILLER CELLS were awesome. My sister, Marie.

So today was a not so good day. Things started out OK, but I noticed some shortness of breath… checked my blood sugar (OK), then my BP (OK), so I lay pretty low all day and drank lots of stuff… water, Gatorade. Big “D” appeared and made the afternoon a challenge… another day in paradise. Another bright spot is that the edema has pretty much gone away. The only thing left to fix is the GVHD, and according to Dr. T., this could take upwards of another 6 months.

All in all, we’re making progress. We have bad days, we have good days. I’m trying to regain my strength… the prednisone is a real sapper of muscle mass, especially quadriceps, arms and shoulders. We work on this every day, just trying to stay ahead of the game. What really bothers me is that I was doing so well 100 days after transplant (this was the middle of July). I was starting to get back to normal, even driving on short jaunts.

We’ll get through this… won’t we?

In the next week or so, I should have put together a story… the ultimate Road Trip story, of a trip that Ruth Ann and I, along with her parents and Becky took to the Southern Ozarks in 1975. I’ve been racking my brain for details about the trip, and son-of-a-gun, I’ve been able to remember a lot about that trip… wait until you hear this story!

I know it’s been a while… and this will be a short one. I just wanted to share the good news with the folks in our circle.

I had a P.E.T. scan last week and met with my PA yesterday. I am in...

COMPLETE REMISSION!!!!!!!!!!!

There were absolutely NO cancer cells “lit up” by the isotope… None at all! I even got to look at the actual pictures, which was a real treat. Fascinating to see the scan and NO bright yellow anywhere. In fact, all was very dark.

You can’t imagine the elation at our house. Ruth Ann and I want to thank all for your prayers. They work!

As far as the GVHD…we’re gaining on it. The “D” is abating gradually and the only problem now is the serious edema in my legs. We switched some meds yesterday and hoping we can get it under control.The next couple of days should see some improvement.

Again, thanks to all. We love you.

Day + 192 UGH!

Boy, I thought I would be home and in and amongst my stuff by now… it’s two weeks tomorrow that I’ve been here at Moffitt Cancer Center in Tampa. It’s a crunch with Ruth Ann working and Becky and Sean, too. Ruth Ann came on Friday and left today. The bed here is really not very comfortable and the facilities are limited. She had to get home to get stuff done for the shower next Sunday (I just hope I can make it!!). And there are still some wedding details to attend to (small surprise).

I’m being fed a combination of a cocktail of all kinds of stuff (including proteins and lipids and all kinds of vitamins and minerals and DRUGS, supplemented with what I can eat (low sodium, lactose free, immune suppressed… do the math). Getting everything under control has been a challenge for the Doc’s here and we’re hoping to get this under control soon.

I guess I should have expected that not all was going to be as hunky-dory as I wanted. I was in a good place: I was exercising, walking, making myself useful as a house-husband, including cooking. I had even started to drive short jaunts to local places… feeling my oats again, so to speak. So, I’m in a 1 month (so far) setback that really grates on me. Those of you that know me, know that I’m a type “A”, and this is killing me. Not being in the woodshop is one thing, but being saddled with this is awful.

Dr. T. was brutally honest with me when we went through this and she described some very nasty stuff (including death) that could happen with GVHD. For that I thank her… this is far less that the other solution and maybe I should buck up and hope they find a remedy… but SOON!

Keep the prayers coming… I know they work.

Caio,

il Duca

GVHD Sucks or does it?

GVHD Sucks. Let me say that again, just in case you missed it: GVHD Sucks. Once more: GVHD in small doses is a good thing. WHAT???

First of all I cannot believe that it has been a long time since I posted, but for the past several weeks things have not been so good. The back pain disappeared, and I got back to regular workouts and started to get strong again. Working especially on my lower body to get my legs strong… heck, I even started to drive again… short jaunts… it felt good.

So what is GVHD? Graft vs. Host Disease: Where my cells are attacking the grafted (My sister’s) cells. A little bit is ok, because it keeps the grafted cells active and looking in lotsa places for the cancer that remains. We had gotten to a point where there were a couple of spots that Dr. T wanted a little more activity and adjusted meds to do that. It’s a very fine line of adjustment and it caused a problem: THE “D” came back!

I felt awful and did two stints at MD Anderson in Orlando trying to stop it, but it would come back. Frustrating at the very least, demoralizing, and a real chink in the armor. I couldn’t work out, slept until the urge (every 15 min!!!).

Then yesterday, I showed up here at Moffitt Cancer center in Tampa for a bone marrow biopsy, visit with Dr. T. and a PET scan. It would be a long day and Mike Callinan (neighbor and good friend) had a big book. When I went in for the biopsy, my blood pressure was much too low. I mean really, really low. I didn’t know those machines could go that low and I thought I was going to die. No biopsy and Dr. T admitted me to the transplant floor, got IV’s going, etc. etc.

I haven’t been able to eat anything while they sort things out, but I was allowed some Jell-O and that just slid through like it was on a rocket sled. So back to sips of water. Bone marrow biopsy tomorrow AM, so nothing after midnight. BP is up, so no issues there. I had a scope job done this morning (both ends), with biopsy’s taken. We’ll see if they provide any indications of what went so wrong. In the meantime, they're "feeding" me with a couple of bags of really disgusting looking stuff... protein, minerals, vitamins and even a bag of "fat" (although I'm sure it's not the real stuff).

Wedding plans are moving along swimmingly, I just want to walk down the aisle with my little girl and dance with her (and not step on her dress). She and Sean are doing all of the heavy lifting and Ruth Ann and I are helping where we can (I’m tracking the responses). Then we have BBAWP… Becky’s Bad Ass Wedding Planners… our wonderful neighbors, who have stepped up, adopted Becky as their own and are in the wings when the time comes for help.

I’m comfortable in this place… the people are very capable and the transplant thing is every day. Dr. Tomblyn is the best at what she does (please, no offense to Dr. Sarriera). We will fix this, and I’ll be back to eating fresh pesto in no time. Maybe some chicken cutlet Milanese on the side  and a slice of cold apizza for breakfast! I know this, too, will pass. I just hope it ends soon.

We Will Never Forget

Ruth Ann and I met Joe DeLuca and Linda Gronlund on a beautiful late summer day in the Berkshires, at the home of the Eckler’s, Linda and Larry. They were hosting a picnic for the Morgan Car Club, of which we were members.

We chatted across the lunch table, about racing his car, the “Yellow Peril”, and about his upcoming trip with Linda, to wine country, in California. We talked about my car and the mods I was planning and he was genuinely interested and gave me some great tips. A great afternoon; great folks and great conversation.

Then, a couple of days later I learned that Joe and Linda were on Flight 93. My heart sunk… We looked up the flight manifest… sure enough… there were their names. We cried together. To that point Ruth Ann and I had escaped any direct effect of the tragic events of 9/11… Jack Wright’s son stopped to buy cereal, Matt Chavez took the next Path train home to New Jersey when the first plane hit the Twin Towers.  Everybody we knew was safe and sound, except for Joe and Linda.

We mourned privately for them but I picked up the newspaper this morning and in a picture of the Flight 93 Memorial was Joe’s name… all of the feelings from 10 years ago came back. Two lives snuffed out by radical extremists; two names indelibly etched in the fabric of this great nation, with the hero’s Desert Storm, Vietnam, Korea… back to the Revolutionary War; two honest-to-goodness Americans. I want to remember Joe as one of the “Let’s Roll” guys, who stopped the plane in its tracks and foiled the hijackers intended mission. I think I’ll keep that thought.

I talked to my nephew, David, this morning. He’s just back from Medical Officer training and looking to deploy sometime soon. He feels very strongly about his military service, following his father and grandfathers, and in spite of his family obligations(three kids, ouch), he’s OK with a deployment to Afghanistan, or Iraq… he’s a trauma surgeon and what better way for him to give back than to fix our broken troops. They do deserve the very best. He feels that he would spend his time being very bored if the deployment was stateside. I love him, his mother worries, but he is committed to his obligation and to his service for our nation.

I think about Rod Stout every day, too… picking up troop causalities in Afghanistan with his airborne ambulance. I worry about him coming home safely… I think of Linda and those two great little kids.

Ironically, the Washington Redskins are playing the New York Giants today… a battle on the gridiron, not the battlefield. Although many towns, big and small, were affected by the 9/11 attacks, here are two teams from the cities that were impacted the most on 9/11. We won’t forget, will we?

I am so blessed.

Not just with my family (and family to be)… not just with the fact that this treatment seems to be working thus far… not that I am comfortable with my life and the way I’ve lived it to this point… but also for the “force” that led us to this house in this neighborhood and with the neighbors and friends that we have here; and for their support and concern especially over the last two years.

When we moved here a little over four years ago, we met our neighbor on the left and the part-time neighbor on the right… but that was all. When Father David announced from the pulpit at Mass that there was a parishioner that needed transportation we were introduced to the “Posse”. Those friendships have grown over the past two years and have expanded to the other neighbors we hadn’t met. There was Bunko Nite and the Bunko Husband’s dinner… the quilting relationship that developed for Ruth Ann and the woodworking relationships that developed for me. Ruth Ann found other teachers, too. Others to commiserate with!!!

But the outpouring of support and concern that I witnessed on Saturday afternoon was beyond all expectations.

These neighbors… no, friends… from this neighborhood put together a “Welcome Home, Don” picnic that blew us away. To begin with, everyone there when I got there had surgical masks on so I wouldn’t feel out of place with mine! With food, a craft sale, bake sale, a huge water slide for the kids (oh, and for Gus and Karen), face [painting (for kids and adults) it was a complete success. My lawn guy, Juan Carlos, donated a popcorn machine,  a sno-cone machine and a bunch of the tables and chairs. The neighbor ladies had been sewing up a storm and baking up a storm. Everybody pitched in… even Rod Stout. Rod is a medivac pilot currently serving in Afghanistan. His wife Linda (a young Vietnamese woman, ironically) brought along to the picnic, a flag that Rod sent. The flag was flown from his helicopter on the 4th of July this year. It came with a certificate signed by all eight crew members. I can’t tell you the wave of emotion that came over me and Ruth Ann… I was absolutely speechless.

Even the weather cooperated: We were completely ignored by Irene and we had about 5 minutes of heavy rain and wind about an hour before the festivities started… and some wind during. But the air was downright cool and with no humidity… pretty atypical of August in Florida!

But we’re back to heat and humidity, and Ruth Ann is back to school. We still have Nittany. Becky and Sean got back from Hawaii this morning at 7:00 AM. And I have to go for some sort of inhalation therapy this afternoon… busy day. I’ll probably end up cooking tonight. Made a great pasta last night: I made some fresh pesto the hard way, by actually chopping up all the basil with the garlic and pine nuts. That was some back-breaking work! Cooked up some penne and before the penne was done I threw in a slew of fresh string beans. Mixed the penne, beans, some fresh chopped tomatoes, fresh mozz cubes… WOW, what a feast!

I’ve been a hurtin’ cowboy the past couple of weeks: the lower back pain is still here and I’ve got some really stiff joints and muscles. Fortunately, the stiffness has abated  a bit and except for walking stooped over for the first hour I’m awake, I’m doing OK. Finally got back to exercising and walking, but I have to be careful not to overdo it.

Geesh… lostsa news. The chair that I was making for the church has been finished and is now being used for Mass. I remember, right after I was diagnosed this time, I went to Greg Wolter’s house to pick up the wood (Florida Cypress) to build it. It took a while to come up with a design that would work with the altar and ambro that Greg and Terry Robinson had built. With the help of posse member Gene Clark and the keen eye of another posse member, Mike Callinan, it was finished, save for the application of the finish, just before I left for Tampa back in April. The finish is a special beeswax and it gives a really nice natural sheen to the Cypress.

Yanks are two down to the Sox... but, heck, it's almost September! UConn's recruiting efforts landed a really talented kid from Middletown... Life is good.

I’m in a New York State of Mind… Day +131

It couldn’t be better… here we are in the latter part of August and the Yankees and Red Sox are in a virtual dead heat for first place, with the Bronx Bombers holding a slim ½ game lead! I’m having a tough time thinking of a sports rivalry that is any more intense or that has any more rabid fans than this.

I grew up in a Yankee household… my Dad and his brothers were all Yankee fans and all played baseball. Uncle Bobby played softball well into his 40’s and I was a batboy for his team, the North End Democratic Club. Uncle Pat and Uncle Dom were Yankee fans, too… but Uncle John, Uncle Tom and Uncle Bob were Red Sox fans. As a result, I had some (actually many) cousins who rooted for the dreaded Red Sox. Oh, what shouting matches we had… Williams was better than Mantle… trade Mantle for Williams? Through the 50’s 60’s and even the 70’s the Yanks had the edge, winning the pennant and World Series many times.

But when the Red Sox started winning earlier in the last decade, all heck broke loose. So now the BoSox have two World Championships and haven’t let up since (BTW, the Yankee count is 27!). While Florida residents are well into the football season already, baseball, for me, will last until the beginning of the college basketball season (GO UCONN!!).

On the health front: neuropathy is still an issue, but it seems to be abating, albeit at a snail’s pace. Of bigger concern is the muscle and joint pain… a consequence of lowering the dose of the anti-rejection drug. Marie’s cells are goin’ crazy. The swelling in my right leg is getting better, and looked almost like my left leg earlier this morning!  Sometimes it gets so swollen that my skin hurts, but no pain now. If we could only speed up the fixing of the neuropathy, things would be just fantastic. I’m going to see my VA doc tomorrow… I haven’t seen her since February. I was using a walker back then, so my improvement should surprise her.

We have a cat in the house with some problems: a messed up thyroid gland. We had Eli on meds to control it, but the meds aren’t working at the dosage we were giving him. We were going to do a thyroid irradiation, but his kidney function is only at 65%. We humans can live with only one kidney, but cats need much more than 65%. We’re moving from a trans-dermal (through his ear) to a pill… better control and the expectation is that he’ll do better. He’s somewhere around 12 or 13… he picked us back in ’98.

I was working in my office one day when Maggie (my Black Lab) started barking like mad. I went into the dining room and there was this little cat sitting in the middle of the driveway just driving Maggie crazy. He hung around for a couple of days and Becky came into town on her way to the Cape for the summer. In a few more days, this cat weaseled his way into our hearts. Becky threw him into a carrier and brought him to the Cape… had him neutered, got his shots and a bath… now we owned him. September came and Becky went back to Savannah… and left Eli with us. UGH, two cats and a dog! Eli became my Father-In-Law’s cat and lived in the apartment we built for them. When my FIL passed away, Eli mourned for about three months… wouldn’t groom himself and just moped around. He’s a real love… we call him Mr. Snuggle Bunny.

I not getting bored sitting around… seems the days fly by. There is always something to do. Today I’m doing a few loads of laundry, packing some packages up for mailing, planning dinner (chief cook and bottle washer here), reading, napping, etc. I read a great article yesterday, in a magazine called “Saveur”. Becky’s good friend, Courtney is production manager for the magazine and thought I would like the article on Pesto. I did! In fact I picked up some useful information about growing basil and making pesto. Last night I made a nice fresh Pesto Genovese over Cappelini with some string beans.  Ruth Ann had a glass of wine… I had some cranberry juice. The hardest part of a meal like that is cleaning the food processor! I knocked the meal out in about 20 minutes, And it took a half-hour to clean up!