Day +52 "On a Day Like Today, We'll Pass the Time away..."

Ahhhh, Memorial Day... I can smell the food now... Eggplant Parmigiano, Sausage and Broccoli Rabe, Baked Chicken and Potatoes, Stuffed Grape Leaves, Kibbi (cooked and raw)... yes, our picnics were different. We had some of the traditional stuff, like potato salad, too. But our Italian heritage (and my Lebanese Uncle!!) pretty much dictated the food we ate. Of course, that was the noon meal. Then there was the traditional whiffle ball game that lasted all afternoon while the Mothers gabbed, the Fathers watched a baseball game and between innings came outside to umpire the whiffle ball game. They had to... almost every play was contested. The evening meal was the hot dogs and hamburgers... and sausage patties!!! Ruth Ann's Uncle Jimmy used to get these wonderful lamb sausages. Now THAT was treat.

These picnics took place at Uncle Tom and Auntie Ann's house. They had the room for it. Ultimately, my Grandmother had 28 grandchildren... that's 26 first cousins, just on my Mother's side! They were a load of fun and we all looked forward to them... Memorial Day, the 4th and Labor Day. My cousin Joe T. later on when we were having the "Cousin's Picnic", indicated that a D'Angelo (my Grandmother's name) gathering wasn't complete unless one of the Ciochetti kids got a wallop and Auntie Clare administered it! These "Cousin's Picnics" were great time but as our families grew and spread out, the interest waned. Ruth Ann and I were spending a lot of time at Cape Cod... especially the summer holidays, and the other cousins were doing much the same.

Ruth Ann and I will be spending a quiet Memorial Day here in Tampa. I had a PA appointment this morning at 8:00 AM... everything is looking good on the blood work. White blood cells are progressing nicely as are the hemoglobin and platelets. Neutrophils are at 2800 (Yea!) Only changes in meds for now are a decrease in the Prograf (the anti-rejection stuff) and a decrease in the magnesium. The big "D" is on hold for now, too.

I'm just getting a little bored. All I can do is read, watch TV, and play on the computer. We get out shopping a little when we need stuff, but we're trying to stay away from crowds, and I have to wear this silly looking duckbill mask. Not only is it SHAPED like a duck's bill, but it's YELLOW, to boot! Kind of like the Scarlet Letter, only yellow. Most of the transplant patients have to wear them, so if you see one, it's a brother (or sister) in arms.

I did two laps last night and hope to do another two this evening.  I'll do my upper and lower body exercises as well. Got to get stronger... we're on the downside of the odyssey. Can't wait to get home... I miss being around my stuff. And I'm sure my caregivers are starting to get a mite tired of the drive to Tampa, too... and hanging around with me!!!

Enjoy your Memorial Day... drink some beer for me!

Day 47 Take Five

Well here we are almost halfway through this “ordeal”. We met with Dr. Tomblyn yesterday afternoon. I had had labs on Sunday so that she’d have the results. Things are looking OK… most of the counts are creeping up, neutrophils at 1700, white blood cells doing OK, as are hemoglobin. We’re watching the Albumin which is one measure of protein. Another issue popped up, a virus that is common in BMT. The doc fiddled with the meds, added one, and off we go. My weight as been holding, the central line is OUT!!! Yea!!

Walked another 2 laps tonight, but the other night was a different story… I did one and was ready to drop. It happens.  I was talking to my good friend Clark yesterday. He was my roommate in Vietnam, and lives in California. Clark‘s recovering from a hip replacement and doing well. But, he’s hit a bump with his PT and was complaining about not being able to do as much at his last session.  I guess our bodies are telling us that they need time to recover. Funny, huh?

I got an e-mail from another old friend today, Mike Draper. Mike and I started our careers together back in 1971 with Connecticut Mutual Life and shared an office for several years.  I used to get the NY Times (for those who know me that's strange!!) on Sundays and I would give him the Book Review and he would give me the Sporting News. Well after several years of tenacious work, he’s got his first book published, Spattered Blood, due to be released this fall. He’s also got another one in the wings, ready to go. For a preview, go to http://www.momstreehouse.com/author-spotlight-mike-draper.

GO MIKEY!!!

Take care all.  I won’t be so long in getting another to you.

Day +42 Do You Believe in Magic?

It was another quiet day here in Tampa. Sean spent the day with me… I can’t believe the work schedule he keeps. He showed up at about 8:30 last night to relieve Becky. He immediately set up his work computer and worked (even on the phone) well past my bedtime at 10. Then, his alarm went off at 5:30… when I got up at 6:30, he was at it again… reading e-mails and answering them. Then it was a day filled with conference calls, etc. AND WE STILL DON’T KNOW WHAT HE DOES!

I did have labs drawn at 8 this morning… nothing special. But no infusions or anything special. We were out of there and home by 9. Tomorrow my central line comes out (Yippee!!). I have spent almost two freeking months trying to keep the dressing dry when I shower. No more!!!

Sean decided to take a break from work this afternoon and asked if I was ready for a walk. So we went out in the 81 degree heat and did TWO LAPS!!! Two laps without a rest break, even! The sun did take its toll… I was very tired when we got back. But it was a milestone. We’ll work on the two laps (preferably NOT in the sun) and try to work up to three over the next week. I’m also doing the exercises (got PT tomorrow… maybe some new ones).

Ruth Ann is here thru Monday night… she doesn’t travel light. She brought her sewing machine, a roll-a-board filled with her sewing and another roll-a-board filled with clothes. Honestly, I thought she had left enough here to clothe a small undeveloped country. Maybe it’s just filled with clean underwear. But it’s not like we don’t have a washer and dryer here! Oh, well. She did say we had to run two errands… Talbots and Total Wine. Neither of these stops are going to be cheap. But Anthony will be here to be my caregiver in a couple of weeks… so we have to stock up on some $3/bottle Dago Red. Otherwise he may get into the stuff we like… the $5/bottle stuff!

Day +41 Come on a Surfari With Me

The past two days have been very quiet again. I’ve had no appointments for labs or anything since Monday. We did meet with the Doc on Monday and she told us that she was very pleased with my progress. I asked her if I could go home, “NO” came the very quick reply. I feel good too, except for the occasional “D” (which we can manage). It was a very upbeat meeting, as all have been lately, and I guess that’s most of the reason that I have felt good leaving them.

For Friday AM we have scheduled the removal of my Hickman central line. I will NOT miss it by any stretch of the imagination. It has to be kept dry… yea, right. I tried the shower shields that we get from the pharmacy at the hospital… they leak and the adhesive is awful and did a job on my skin. An alternative is Glad Press ’n Seal… better on the skin but leaks like a sieve. So every morning I get out of the shower with the hope that it stayed dry… nope, wet again. Good thing they change the dressing once a week. Otherwise it would be a tattered mess by now.

In my last post, I mentioned the problem with my balance when I close my eyes. My friend of 47 years, Ernie from Danbury reminded me of some of those nights at UCONN when we closed our eyes and the world started spinning. He said that when his daughter was at UCONN she had the same problem at times… must be in the air… all that cow manure from the Aggie College.  I’ve heard many other stories of that malady at other colleges and universities… even the ones in big cities. I mean, heck, if you’re at Columbia, where do you find a cow in Manhattan or Harlem?

Ernie also mentioned that pretty soon three ¼ mile laps will equal a mile!!! He was making reference to an experience at Ft Gordon, GA. We at Signal Officer Basic back in 1968 and we had to go through a PT test. For the most part it was easy… throw a grenade???, run dodge and jump, etc. But we had to do a 1 mile run. We were really dogging it… me, Ernie, Larry, Bobby (different Bobby from before) and a couple of other guys. Some of the guys were really taking it seriously and we got lapped. Well, the gung-ho guys crossed the finish line about a ½ lap ahead of our 3^rd lap, so when we crossed the finish line we just told the Sargent that we were done… so three ¼ mile laps equaled a mile. We finished with some respectable times, too.   

One last thing: some have indicated that they haven't gotten an email with the link for my last post. Don't know where the problem lies... Outlook seems to be working OK on this end... maybe an ISP problem. Anyway, if you haven't gotten a post from me in a while, just go to the blog site (http://don-thelongestjourney.blogspot.com/) and you'll see it there... and all of the others you may have missed.

Day +38 Life is but a Dream, Sha Boom

Quiet weekend for the most part… no appointments yesterday, just some (actually a LOT) of blood work today. They did a Prograf level test and I got a call from the team around 1 PM telling me to increase the level a smidge.  Prograf is an anti-rejection drug, necessary to prevent MY body from rejecting my SISTER’S stem cells. There are also some really nasty things that could happen, if that is allowed to happen. Oh, the sordid details!

Jackie and Gus, of Posse fame, came to spend a couple of hours here yesterday. I haven’t laughed as much as I did in a long, long time. They also brought some goodies… a really special chicken salad that Jackie makes, and a coconut cream pie, a piece of which I’m working on right now. Gus brought some interesting and laughable stories of IRS audits of years past. As an accountant for many years, you can imagine the stories. We laughed until our sides ached!

Passed another recovery milestone starting Friday evening… I’ve already told about having Ruth Ann carry my walker 2/3 of the way around the track. Well, both Saturday evening and this evening, I carried my cane ALL THE WAY AROUND. I feel like my legs are getting stronger and my feet aren’t as numb as they’ve been. I’m also much steadier on my feet, but if I close my eyes not so steady. I still need some visual reference to tell my muscles what to do. Overall, I’m pleased and we’ll try to stretch out that 1-lap to 2, then three. No telling where I might be in July!

Day + 36 Friday the 13th… Not so Scary Anymore!

Had a great appointment with the Doc this AM and she told me that I’m way ahead of where she expected to be… YAHOO!

It all started the other day when I met with one of the PA’s. He had the results of the CT scan I had had done on Monday. The scan showed that two of the nodes had not increased in size… and hadn’t shrunk, either. However, four of the nodes had shrunk!! FOUR OF THEM!!! This is HUGE!!! This is what we expected from Marie’s cells, but not as soon as it’s happened. Also, my blood counts are pretty much where we expected to be… platelets are down but at an acceptable level.

Later on today I went for a PT evaluation, and my balance has gotten much, much better. So I went through the evaluation and I’m going to go to PT twice for the next four weeks. We really tested the balance thing and I was surprised at how well I walked without my walker.

So when the sun went down and the sea breeze cooled off everything, Ruth Ann and I went for a walk. When we got about a third of the way around I asked Ruth Ann to take my walker so I could walk a bit without it. Well… I FINISHED THE LOOP without the walker. It was a tough walk… really concentrating on my balance. But it was very satisfying and gave me confidence that I can get through this.

There is still some rough going ahead but at 35 days, I’m a third of the way through. Two weeks from today I’ll be at the halfway point. No, it won’t be downhill from there, there will still be bumps in the road.But I'm ready for them.

Jackie and Gus are coming over tomorrow… visitors from the neighborhood… Posse members. Looking forward to it.

Day + 32 Where Have All the Flowers Gone?

Not a terrific couple of days. Counts are down a bit; more “D”; resorting to Lasix to control the swelling in my legs (ankles really… I’ve got Cankles!). I’m also wearing those stupid looking stockings all the way up to my crotch… they are NOT comfortable.

I met with the Doc yesterday and she’s not too concerned. She was very through and went over the blood work line by line and explained what was happening. I’m at day 32 and all is expected. She had ordered a CT scan and that was done yesterday afternoon and I had a bone marrow biopsy today. We asked (Ruth Ann and me) what she was looking for in the CT scan and she said she wanted to make sure there was no new criminal activity. As to the biopsy, she wanted to see what was with the bone marrow, what activity, and were the new cells playing nice in the sandbox. We will probably know the results of the CT scan tomorrow, or the end of the week at the worst, but some of the bone marrow tests will take up to three weeks!!! Yikees!!! Patience, it’s a virtue, right?

Ruth Ann was here for a day, and then Becky took over. She’s leaving for her 20^th (can you believe it?) reunion at Taft in Watertown. She and Sean are flying up on Friday morning and staying at the Litchfield Inn. Mmmmm, my 50^th at Croft is coming up in three years… how the time flies.

Food story: Becky and I cracked open a container of that pasta e fagioli tonight. We cooked up some ditalini and the feast began. We both ate a big bowl and finished the rest as seconds. I was damn full, and so was Becky. Then Becky says she could eat pasta e fagioli until it makes her sick. I’m glad we ran out when we did.