Day +22 : Sound the Gong!!!

We knew it was eventually going to happen and overnight (or maybe the D helped… LOL) but… drum roll please… Neutrophils are FINALLY UP!! I saw the numbers and they confused me so I just listened to the PA and believed what she said! Up far enough that the team has decided to remove some of the antibiotics that I’ve been taking and had infused.  That meant that this morning, for example, I only needed the magnesium, which is wasted by the anti-rejection drugs. We’ll see how the week flushes out, but I may be able to get rid of the central line. THAT piece of equipment is a real pain... has to be kept dry when I shower; shower shields are tearing up my skin. Switched to Glad Press ’n Seal… seems to be working better and no torn off chunks of skin.

The lower GI situation persists, but not as bad as it was. I figure it’s on the wane… wish me luck. I gave them a “sample” today… they want to check for all kinds of stuff. Just let it go away.

Had a visit today from my neighbor and good friend, Mike and his wife Artha. We had a great two hours together. Mike, being my next door neighbor, has assumed the role of chief house watcher. He and Artha are Posse members, and I could never thank Mike enough for what he’s been doing for me… from keeping an eye on the house painter, to taking care of the pool, to helping with the meds for the cats.  He and Art had gone to Sarasota to pick up some glass… Mike is a stained glass wizard… and stopped here in Tampa on the way back to Orlando. Great folks, great visit.

Have a great Sunday.

Day +21 Oooh that hurts

When I left you, we had plans on doing some cooking. Well, by the close of cooking today, we had the chicken soup done (just have to add the noodles or pastina or orzo). The meatballs and sauce are done, and the fazooles have been cooked (they only need the ditalini to be added, or elbows). We found that if you put the pasta in and then freeze the portions, the pasta gets soggy and soaks up all the jucies. Tomorrow, I have the job of washing the escarole for the escarole and beans. By then the freezer will be full of GOOD stuff.

My stomach is still rolling…UGH! Had a little “D” yesterday… you know that lower GI tract thing that you have to stay close to a bathroom for. Told the doc this morning. She said we’ll watch it. Well, I watched it ALL AFTERNOON! I lost count of the times. We finally had to call the Bone Marrow Transplant Clinic (That’s one of the things that they “watch”). Of course they said…”you’ll be in tomorrow and we’ll do a culture”.

There is a good side to this if you can figure out how! This lower GI thingee is an indication of GVHD… Graft vs. Host Disease. A little bit is a good thing, and this also indicates the stem cells are working. As to the good thing, this helps the docs to monitor the graft and how well it’s working. I think that’s how she related it me.  But, it’s a good thing and my backside HURTS!

Let’s hope it helps the neutaphil counts, because it’s still down, while the other counts are incrementally up again. We asked the doc this AM if she was concerned and she said no. So I have to go with that and see how the next week flushes out.

In the meantime, ya’all have a great weekend. Have a drink for me. 

Day +20, Now we're a 5th of the way there!

Good Day Folks. Update on medical condition first: Counts are up... White Blood Cells, Hemoglobin, and Platelets(close to normal). However, the big one, the one we're all waiting to jump, the Big Kahuna, Star of the Show, the Neutraphils, refuse to budge off a low level. They're coming up... actually kinda bouncing around... down a bit, up a bit. Sluggish, asleep. They were expected to take a jump this week... WAIT, we still have tomorrow. They're not worried, could be next week, too. In older patients and donors, it sometimes takes a while...zzzzzzzzzzzzzz.

All's well at the apartment. Since Ruth Ann got here last night, she's been adding the “Ruth Ann” touch to the apartment. She brought me a ton of stuff I asked for from the house and has added her little touches (like the arrangement of stuff in the bathroom!!) all over. Really starting to feel like a home instead of a college dorm! Today, she went to the grocery store to pick up a “few” items. By Monday, we should have the freezer filled with chicken soup, red sauce and meatballs, escarole and beans, and pasta fazoole. Fit for a king. This is penicillin for Italians! Can't wait.

Ruth Ann and I tried to wake up those Neutraphils this evening... went for a little walk. I actually did a quarter mile with my walker. My legs did OK, but the tennis balls on the back legs of my walker are done in... worn to within an inch (maybe a 32'nd of and inch). If you got any airless tennies, send 'em my way.

Day +19 Rigatoni and a Nap

Yea, some Rigatoni from Joseph's in West Palm and a nice Marinara. The nap thing is a John Pinette thing... he's a comedian.  But it works for me.

I was talking to one of the Posse today and she said she couldn't wait for me to get home to start cooking. Here's the story: Almost two years ago when I was first diagnosed, Ruth Ann and I spent the summer together going to chemo treatments and blood tests and Dr. Visits. But when school started we didn't have someone to drive me all around. Ruth Ann mentioned to Fr David, our pastor, about our dilemma. He relayed the story at the pulpit and immediately a neighbor, Gene Clark, stepped to the plate. And dragged in another three neighbor families.

That started the Posse thing. I got a computer program on line called COZI, that tracked all of my appointments and the neighbors were able to "sign up" for duty that day, whether it be a chemo treatment or just a blood test.

Ruth Ann and I tried to figure out how to thank them and the food thing started. I'm a fair cook and we started with Pizza from my oven. We did several... Margarita, pepperoni, peppers and onions and sausage and plain cheese. It was a tremendous hit! About a month later we did a 3-pasta dinner (the idea came from Becco Restaurant in NYC). We did a Rigatoni with meatballs and red sauce, Linguini with fresh pesto (my garden), and a 5-cheese Ravioli with a butter and sage sauce (The sage from my garden also). Then there was the Grilled Pizza with all the toppings, and then Chicken Marsala.

Just before I came to Tampa, I was bullied (by the Posse) to do the Grilled Pizza again and we did that the last weekend I was home. It's a blast to do it and cooking for 10 is no big problem. So Jackie and Gus want the Grilled Pizza again. I'm sure this is OK with Gene and Judy, Mike and Artha, and Lee and Larry.

I can't wait to do it!  Hey lastly: all counts are UP... just waiting for the neutrophils to take off to let us know that the graft has really happened. I'll make sure to post that one as soon as I know.

Day +18 Almost 20% Done

Some more good news today... whites, Hemoglobin and platelets all up a bit. Heck the platelets are almost at normal. We’re waiting for the neutrophil count to take off. That would mean that the graft has taken place. Could be any day... let's hope its tomorrow. At that point, my body will be able to fight off infection and I'll get off the ton of antibiotics I'm on now... including the intravenous ones. They make me feel real tired. I spend the entire time of the infusions (today 3 hours) sleeping. Not really a bad thing… but I’d like to use that time to do some reading… something productive.

Ruth Ann is coming out tomorrow and Becky is going back to work on Thursday and Friday. Not that she hasn’t worked here… she’s got her computer and phone… what more does she need. She was on a conference call with her team for an hour earlier today. And worked, while I slept, in the patient waiting lounge. Interesting thing… she can knit while she talks on the phone. WITHOUT LOOKING! I hate multitaskers.

We’re just hanging out... kidna like the old days when she was much younger… and so was I. She and Ruth Ann are real task masters… making sure I do this and do that… all jobs of the caregiver. They had to go to a class for a couple of hours at the hospital to learn about what, and what not to do, foods I can eat, yadda, yadda. Anyone who becomes my caregiver has to go through the class. Some things are obvious, but things that we have to watch out for, like garnish on the plate at a restaurant, or something like the onions on a regular burger at McDonald’s. We don’t know what process they used to wash the onions, so we just avoid them. Chances of ordering and not getting the onions are slim, so we don’t go to Mickey D’s.

Now I’m hungry and time for a snack

Day +17 What a Blast!

Hey folks, all's well here in our little doll house. I haven't lived in an apartment since my military days, and as figured, it hasn't changed. Nice view, tho' of the lake/pond with ducks and little ducks that have to duck the eagles. The last crop of ducklings numbered 15 and the eagles got all but TWO! I'd say the eagles are either very accurate or very lucky. We had a flock of ducklings that were hanging around our house last year (12). And at one point, Ruth Ann was out there with a broom to scare the hawks away... all 12 made it as far as we know.


So back to me... ALL COUNTS UP!!!! Platelets, Hemoglobin, White Blood cells... Woo Hoo! Had a little setback this afternoon... some burning when I did number one. They said it could be a virus that everyone has, but in my case, because my resistance is down, it crops up. They watch it, but I'm taking a TON of antibiotics, including two IV ones, and they don't want to add any others.


Becky is here with me and working... I wouldn't let her up from her workplace all day. I'm worse than her boss!


Hope you all had a great Easter. I did! Getting out of the hospital was better than the Easter Bunny.

Day +15 Ever Closer

Had a bit of a scare overnight...At 4:00 AM, I had a temp (99.7) that was mighty close to the "fever" area (100.5). A fever would keep me here until the temp had gone down for 24 hours. But by morning it was back down to normal and has stayed there all day. NOTHING is going to keep me here if I can help it.


Ruth Ann and I spent a quiet day... she quilted and read and I slept most of the day. I had to take an oxycodone for a headache and the sore throat. It makes me sleep and very loopy, but it's the only thing I can take... no Tylenol, no Advil, no aspirin because of the interactions with the meds I'm taking. So I put up with the loopyness and the sleepiness.


I probably wont post tomorrow; it's going to be a busy day. see you on Monday.


Happy Easter !! 

+14... The best news yet!!!

It's official folks... blowin' this Popsicle stand on Sunday. Got the keys to the apartment... ready to roll!


The white count dropped a smidgen again, but the Docs not concerned because I'm eating. I may not clean my plate, but we're getting it down.


Hey it's Good Friday, and as an Italian, I would normally be anticipating all the pies and breads... rice pie, ricotta pie, apizza pien, all the Easter breads, made in virtually a 100 different shapes. But the very best is the apizza pien... a mouth watering combination of several cheeses, including Parmigiana Regianna, Prosciutto de Parma and a crust to die for. It's heart attack on a plate, but it's only once a year. Not this year tho'... very restricted diet.


Every one have a Buona Pasqual!

Day +13... a tiny step backwards

I won't bore you with the details, but suffice to say, today was a mixed bag. We're still shooting for a Sunday release, but my white cell count dropped a tad. This could be the absolute bottom because my platelet count WENT UP!! That means my bone marrow is working (with Marie's cells). So for obvious reasons the doc is cautious about the weekend. Ruth Ann is packing the car for a move and I got the keys to our apartment this afternoon!!! So as soon as the doc says "GO", we move in.

I've felt really crappy all day... the PT folks came and dragged me out into the hall for some walking and then some exercises in place for some strengthening. I sat around and did nothing the rest of the afternoon. I am feeling a lot better than they told me I was going to feel, however, and I'm happy with that.

I'm still getting reaction about the Bobby story... talked to my sister today and she brought up a few more event from Town Plot. What a place to grow up. You couldn't do ANYTHING without it getting back to Mom and Dad... good or bad. Mostly the bad stuff though.  I'm sure in every other neighborhood in the 1950's and 1960's Waterbury it was the same. I got stopped for speeding in downtown one morning... license and registration... sure, the cop knew Dad. "Young man, which would you prefer, that I give you a ticket or call your father". Fortunately, no ticket, no phone call; a stern warning was enough for me to slow down.

Let's hope for better counts tomorrow... they draw blood at 4:00 AM.

Ciao,
Don

+12 - My Lucky Number?

Yes folks, 12 could be my lucky number. I appears that my counts have bottomed. White cell count dropped by .03, but both hemoglobin and platelets have gone up a smidg. That's exciting and it means I've pretty much felt as bad as I'm going to feel (Did that make sense?). Doc's encouraged too, and reaffirmed that the weekend will see me leave this place. I got an e-mail from a friend today and she wanted to know about the food... not bad I said, especially compared to ORMC in Orlando.


One day they served beef tips on rice... next day, beef stew (same stuff, just a day older)... next day, beef soup (same stuff again). It would be OK, except that the beef tips were awful to begin with, and it only got worse!!! Here, we get a menu every day. Breakfast is pretty pedestrian with the usual suspects and the choices never change... oatmeal, eggs, bacon, sausage, etc. Lunch and dinner are the same menu each day, but there are SIX entree choices. So you can choose one entree at lunch and another at dinner. Three entrees never change, but the other three change every day... plus sandwiches and anything from the grill. Best meal yet, chicken pot pie.


I got a lot of good response about the Bobby story. I'll dig into the archives to see if I can come up with more. Nite, Nite.

Day Plus 11 - Much Anticipation

Getting closer every minute. Doc came in this AM and reaffirmed that sometime over the weekend, Monday the latest, I get into a regular situation and off the unit. Been meeting with the social worker and the transition person to decide the kind of accommodations we would want. And the winner is: an apartment. Fortunately there is availability. We had thought briefly of a Marriott Residence Inn, but it wouldn't work out.


I've been developing a sore throat... we knew this was going to happen. It really hurts to swallow. So a little oxycodone to help with the hurt. Also had to get a unit of whole blood today, because my Hemoglobin count had dropped below the critical point. My counts are still dropping, so I'll feel worse before I get feeling better. This is NOT as bad as the regimen I went through in '03. I felt good then for about 3-4 weeks, then the boom dropped... everything hurt, bones muscles, everything. I had places hurting that I didn't even know I had!!!


So I was sitting here today, thinking about all the good friends I (we) have and how we came to befriend them. My earliest friends were Larry and Nicky... they lived across the street. Then Frank and Bobby up the street. Bobby.... oh boy. His name brought shudders to Mom and Dad. They thought he was the anti-Christ, but he was a terrific friend, especially through high school. And he wasn't nearly as mischievous as everybody thought, just one step ahead of the world. The only time he really got into trouble was the New Year’s Eve we were hanging out at his Cousin Richard's house. Richard's parents and Bobby's folks were out on the town. Bobby had gotten his license a couple of months earlier, but his father didn't want him driving at night. There was a car in the garage, with gas, and a set of available keys. And like any teenage boys, it wasn't long before we were dashing about the town. You know this can't end without trouble. We were heading down Scott Rd, on hard packed snow... the city didn't use salt or sand back then... and as we skidded around a corner, another car was coming up the hill. Bobby got his license back about six months later; there was PLENTY of overreaction at the Sforza's.  Thank God nobody got hurt. Bobby... what a guy.

Day +10... What a difference a day makes

It was bound to happen... they promised me it would happen... my hair started to come out. I asked for the hairdresser to come by and do a buzz cut and now I have a 1/4 inch fuzz. That's the shortest they will let them cut it... they're worried about nicking the skin and opening up an avenue for infection.

Other than that it was a pretty uneventful day: some meds were adjusted; added Lasix to try to get the swelling down in my ankles; changed another so I don't have to Pee every hour. I was so excited during the night. I went to sleep at 10 and when I got te urge I looked at the clock on the wall and it said 3:00AM. I said "HOLY COW, i went five hours". So I got back into bed and woke up again and looked at the clock... harrumph only 1:30. My 3:00AM was really 12:15!!!! And I'm still peeing like a race horse... albeit a little slower and without nearly the volume. Maybe this next dose will help.

I've been moving around more... cruising the hallways. If I do 11 complete horseshoes I've done a mile. That's not easy when you're dragging a walker with you. I can do two with ease... I;m gonna shoot for three. When I get to four, I'll try to do it three times a day... that's better than a mile. Maybe by Friday. PT was here this AM and worked my over... legs, hips calfs, quads. Then some balance stuff... eyes open and eyes closed...UGH!

I think I'll take two more laps before I get turned in.

From semi-hairless Don
Caio

Day +8, Some REALLY GOOD NEWS

Yes, boys and girls, some good, good news. According to the Transition person, the team is looking to cut me loose by the end of the week. From here I'll move to an apartment. Ruth Ann and I talked about Hope Lodge run by the American Cancer Society, but Hope Lodge sounds more like Stalag 13. First of all, the curfew is 9:00PM. I don't plan on being out much after 9 most nights, but If I have a late treatment that goes beyond 9, I have no way of getting back in!!! We sleep in the car!!! Plus, the only refreshment you can have in your room is plain water... no soda, no chips, no leftover pizza... NOTHING. Then the "living room" in each of the units is small with no table to set up a computer, let alone RA's sewing machine. Sure , It's free, but I'll take Manhattan.

The apartments are pretty nice... even the one bedroom. Twin beds HUGE bathroom nice kitchen with all the dishes, pots, pans, glasses, flatware and small appliances. I could be there up to 3 months... we'll be makin' spaghetti aglio olio in nothing flat. RA will have to chop the garlic... they don't want me near sharp objects!

Quick comment on the picture with Dick Vitale: we were in Siesta Key at the "Broken Egg" 2 days after my recent diagnoses... July 4th 2009... I was with Ruth Ann and Bob Lombardo. Bob had come up from Bonita Springs to spend the weekend with us. Dick was holding an autograph session... all the profits go to cancer research. Bob thought I needed a book and Dick put an inscription in it for me... covered the Huskies, cancer and the V foundation. I'll never forget Jim Valvano as he was dying of bone cancer: "Don't give up, don't ever give up". As I went through treatment in '03, I thought of Jim and his words. They gave me the strength to get through it once... hoping it works again.

Ruth Ann left about 5:15... she's home now. I wanted to get her home before it got dark. See ya'll tomorrow.

Don

Day +7; The thrills never stop

Today was a kinda normal day, until about 11:30. Since the MRI and Lumbar puncture were OK, docs want to see if the double vision goes away on its on, like the last time. But today is a chemo day for Rituxin, a drug I've had as far back as '03 at Leever.
So at 11:30 nurse Crotchety comes in with a dose of Tylenol and a syringe of Benydryl. Makes me take the tylenol and shoots the benydryl into an available line. She was OK with my getting back into bed, because the next thing I remember, it's 3:00 PM, and I'm stunod like you can't believe. It's 9:20 and I still feel a little shakey.

Becky and Sean came over today and went to the "caregiver" class. Sean wanted to stomp on a couple of the participants... and the moderator... who wouldn't shut up. I don't blame him... a 1+ hour class was almost two! We had to feed him pizza to calm him down. We got three pies, gave one to the nurses and did a number on the other two. I think there were 4 pieces left and we gave those to the nurses as well. I remember Nonnie D'Angelo telling me that when somebody brings you candy in the hospital, just give it to the nurses... they'll move a little faster after you've locked them in!!!

One last thing and I sign off: I apologize from not answering evveryone's e-mail. It would take me all day. I read them all... and I'll try to get to as many as I can. Maybe I'll post a general response on the blog.

Until tomorrow... GO YANKS! (another "W" today)

Don

Day +6 and Progress

Here we are 6 days out from the infusion (last Friday)and we're narrowing the reason for the double vision. It's not a bad thing when a pretty nurse is involved, but if it's a burly orderly... oooooh!!!

Anyway, I had that brain MRI last night and I got the results today... they didn't find anything (OK, quit the snickering). Next up was the opthamologist who showed up at my bedside at O-Dark-30 and proceeded to dilate my pupils. Boy, that set the stage for a great day. Not only was I seeing double, but now the doubles were blurry! She came back about an hour later checked me out and said there was nothing wrong with my eyes. Last up was the Lumbar Puncture.

They wheeled me out of here at about 1:30 PM and I was back in my room at 3... quick team, My regular oncologist came in at 5:30 PM and announced that there were NO MANTLE CELLS in the spinal fluid... HORRAY!!!! So the only thing that can be causing this problem is the meds and chemo, and anti rejection stuff, and the anti viral, and the anti fungal and, and, and...

I can live with that. Ruth Ann is here and she brought my patch. So I watch TV with the patch over one eye or the other. It'll go away soon enough. In the meantime I have other things to do...like get my strength back, especially in my legs. And get my balance... still thinking of that first dance.

Still the cauldron...

Met with the docs this am... they want an MRI and a spinal tap to see whats going on with the double vision, I watch TV with an eye patch and switch off. It's happened before and cleared up... I'm not worried about it, and neither is the doc. Also peeing my brains out (not many left, come and get 'em).

... hours later: Just back from the MRI; should have the results tomorrow. No word on when they'll do the spinal tap. That's a piece of cake, I usually sleep through them!

Got a very sad posting from a good friend of mine from Melbourne (FLA, not Aussie). He had to put his Black Lab, Cage, down today. I really hate to hear that, especially when a Labrador Retriever is involved. I remember Maggie, as most of you do, as being really crazy, but when I was first diagnosed in '03, she glued herself to my side and never left. Her bed could be two feet away, but she would lay across my feet. When I was in the hospital, she never left Ruth Ann's side, knowing something was up. What a great dog an she meant so much to me... I really miss that girl. We had to put her down just a little better than a year later in '04... seven years and still an open sore. Ruth Ann bought me a rug with an outline of a Black Lab... I swear it moves.

"Double Double, Toil and Trouble, Fire Burn and Caouldron Bubble"

I wish I had said that. Unfortunately it was the immortal Bard in the opening of the Tempest. No tempest here today... elimination is OK... they're giving me normal saline to boost urine production. I believe I'm peeing more than enough, especially at night. I'm up every hour or so to give them a present. And the nausea is OK; I'm eating good.

The reason for the Tempest opening is that my double vision has returned and the glasses that I got a few months ago aren't working... I see better without the glasses, and my older cheaters are just fine. This has happened before, I just need a patch to prevent me from going completely bananas. Other than that, I'm doing OK... still shakey on my feet, so I'm better with the walker that the quad cane. As my legs get stronger, that'll change. I have PT and OT everyday and exercises to do when they're not around.

Sean hooked up at Slingbox at my house, so I can access my DVR remotely and watch, on my computer, the shows I have saved. This will be great when we go to the Cape also. Skype is getting a workout... just got off with Gus and Jackie.  Becky and Sean, Ruth Ann are regulars... and we skyped with the Spino's and Penta's over the weekend. Got to get a good look at Jay's new Camaro, heads up display and all... Oh to be 25 again.

Ruth Ann and I had a '68 Camaro when we first got married.. maroon Rally Sport with a black vinyl top. One Thanksgiving eve I was coming up Rt 8 in Naugatuck in a light rain... temp was 32. Hit the bridge on the Waterbury line and found it was solid ice. The front end came around and hit on the left front, then it spun around and tapped the right rear. In hindsight, I should have gotten it fixed. I also should have kept the Mercedes 190SL I had, copies of which, restored, are going for $125,000. I sold it for $1200.00.

Anon...

"You Can't Send Me Flowers"... Among other things.

One of those days... Vomiting has become part of my life. The doc and PA are trying to adjust the nausea meds to fix it. I've gotten some food down, but it just sits there waiting for the mid-night rerun. Now the other side is starting to show that it is NOT to be forgotten. This could be interesting if I continue to eat, and keep it down. It's going to come out one way or another.

I was going over the handout from the caregiver class and the interesting things that we take for granted. For instance, I can't have any flowers in my room AT ANY TIME. Plus, when I get home, I can't  work out in the yard for a YEAR. That goes for the wood shop, too. They don't want any of those wood spores getting lodged where they shouldn't. Food's another curious thing. I might a well not even think about eating in a restaurant for quite a while... we have no way of knowing how the veggies were washed... that includes the onions on your Big Mac... and the sprinkling of parsley on your dish of Fettuccine Alfredo. My caregivers are going to very diligent... I swear, I'm not doing this again!

Sorry about last night... things were nuts and then the phone calls started to Ruth Ann wanting to know if everything is OK. I promise, even if it's only a short one-liner, I'll post something.

I know it was only 6 weeks, compared to 4 months, but this is kinda like ROTC summer camp... you can't do that or this go her, go there, run, pushups, more running, UGH. To say I was in good shape at the end of camp is an understatement. Not for Ernie, tho'. Those guys ended up at Devens... the country club just outside of Boston... weekends off and not nearly the intensity of Indiantown Gap. I've got a Doc, a PA, several nurses, a PT person, an OT person, pulmonary specialist... too many people to keep tract of.

Until tomorrow....

Everything's OK

I'll do a post tomorrow. Thanks to all who called with concern.

Love you all....
Don

Counts on down...

It's started. The counts are dropping and will continue to drop for the next week. That means that the way I feel now is the best I'm going to feel for a while. I'm willing to put up with that except that I woke up this morning with a sore back, headache, more neuorpathy than normal and a bloodshot eye. Doc's are adjusting the meds to help, but I'm expecting a long week.

Ruth Ann was here over the weekend... Becky and Sean were here (TWICE), also. It was great to have some company, even if just quiet time.  Now the Masters is over and they've gone home. I'll only be alone for a while... meds will have me asleep before the Yankee/RedSox game starts... sooooo I gotta move on this.

Interesting things, these blogs: I've connected with folks that I haven't heard from in a long time. The most striking was from Jen C... and old friend of Becky's from the Southington days. Becky and Jen were fast friends... in fact, Becky was the only Catholic kid in the Baptist youth group at Jen's church. And went to Baptist summer camp  in Pittsfield, MA several years running. She came home once denouncing rock and roll. That lasted until we got to the CT/MA border!

The last blog also brought out some of my Triumph friends... the ribbing never stops!

On the morrow....

The First Day of the Rest of My Life - Day +1

A chemo day, too. Rituxin.... had it before, no big deal, except for the benedryl they INSIST on giving me. The result is that I slept through the first 6 innings of the Yankee game (Yanks beat the BoSox, BTW). Still got some golf left for the day.

My counts haven't started to plummet yet... it'll take a couple of days. They told me that I'll  feel the worst in about a week, then my counts should start to come up as Marie's stem cells start to generate good blood cells.

OK, another analogy: In 1985 I bought a couple of boxes of used auto parts and a car that somewhat resembled a TR4. I started to tear it apart, until I had it to bare bones. Then came the painstaking process of putting it back together. The body was completed after spending 18 months at my neighbor's garage getting hammered and a couple of new fenders, inner and outer sills, etc. In the meantime I spent virtually every evening taking all of the bits and pieces, including all the gauges and dash parts, under hood (sorry, bonnet, it is an English car, you know) and scraping and painting... strip to bare metal, epoxy etching primer, wet sand to 600, more primer, sanding, color coats, sanding, painting, sanding... UGH! What a process... a labor of anticipation, not love.

Finally it was time to drag it to Paul DesRosier's house for the paint job. Paul passed away a couple of years after this job, but I think of he and his family often. Paul taught Math at Manchester High, never smoked, and died of lung cancer. What a waste.

When I got to Paul's house on the first day, there was a sign in the front of the garage... "Keep sanding, Beat Bud"  We sanded and primed, sanded some more, sanded again.  After 7 weekends of this it (the body) was finished. Figure it out... small car, gallon of color paint, gallon of clear coat. When I  got it home, the REAL work started... putting it back together... starting with a new wiring harness and plugging the last bulb in place. It was done... It took five years.

Inspection, registration...  Sunday on the show field... First in Class, and just missed Best of Show (curse you Dave Bingham!!!).

I don't want a best of show... I am 64 y.o. I'll take a "place" in class... even "Honorable Mention" is OK.  I just want to come back next year for a rematch.

My Birthday... again.

Today is "D" day... day "ZERO"...  my "Birthday" . That's what they call it around here... my new Birthday. Ironically, it is Becky's REAL birthday. We won't get the celebrate until she gets here over the weekend.

Marie had some additional trouble during the night; they ended up keeping her overnight. Her platelets dropped so they couldn't take the femoral line out (Would have been a "Gusher"). She figures it's OK now, and they can take it out.... has to rest to see the reaction for about an hour, then she can get back to her hotel room to shower, change, etc., and back here to be with me.

Flurry of activity here this AM, in prep for the infusion which will probably take place just at noon or soon after. Getting all the premeds (immune suppressant) all the stuff they think they MAY need (additional anti rejection) ready.... UGH! I'll have a stream of folks in-and-out of here all day... SLEEP, NOT.

Ruth Ann will be getting here a little later on as soon as school is out, SKYPE (don.sforza) has been terrific... much better than the phone alone. It's good to see her face and she holds up the cat the the screen... maybe he'll remember me after almost 4 months.

Getting closer... 10:10AM (hey you old people, remember 1010 WINS - NY?). After WWCO,WATR, WBRY, WCBS, WNBC... The tuning capicitors in our transistor radios wore out faster than the batteries... flippin aroiund, trying to find the "right" song. Funniest was cruising through the center of town and you would hear a song coming froim another car and try to chase it with your radio before it went away, And you only had a couple of minutes to do this be fore it was goooooonnnnneeeee! At least at the beach all the radios were tuned to the same station (except for the BB games). The smell of cocoa butter waifting over the entire beach, sandy potato chips, warm cokes, squishy chocolate chip cookies.... ahhhh memories.

If I'm able, I'll post again with an update later... until then.,,, toodles.

Day of Rest.... R I G H T ! !

When they said day-of-rest what they meant was no chemo... still getting the anti rejection drugs and some other conditioning things, too. Got a fresh bag will be hooking up soon. Tomorrow I get the stem cells... fresh not frozen.

We did have a little problem with the harvest, tho': One of Marie's insertion points kept clotting (too many platelets). They had to do one of the insertion points in her femoral artery. She called a little while ago and they are now counting the stem cells to see if they have enough. If they don't , she has to get hooked up again tomorrow. In the meantime, she's cooling her jets in another part of the hospital, needs something to eat, and may not even get back to the hotel tonight... they may just keep her here. Let's hope they feed her and send her back to her hotel so she can get a good night's sleep and go home on Saturday.

I've been doing OK, dealing with some increased numbness because of the heavy chemo the past few few days. Also walking is a problem... I've gone from a single point cane to a quad... walker next, I guess. I'm also nervous about the process tomorrow and how it will affect me... getting someone else's body part, even only blood products, is scary. Stem cells that you expect to do stuff, like kick the crap out of your cancer... big job for the little suckers, especially since the cancer had been so ensconced in my body for 8 years.

My sister has always driven the bus... I hope her stem cells can drive.

Tubes, Tubes and more Tubes.

At one time during the night I had 5 of them sticking out,,, Four coming from the "tree" and the Man purse. I found out today that the man-purse will be with me for a while... it's and anti-rejection drug. Plus, I take some pills for the same thing. One of the reasons I'll need a caregiver when I leave the hospital is to manage the meds.I remember when I had my heart surgery in '83, I had pills to take and I laid them out on a piece of cardboard in the little cups... only way to keep tract.

Marie is here.. got here just a lunch showed up She's reading. I'm blogging. Going to have to take a walk soon. Maybe take in the caregiver class at 3:30. The PT and OT folks were here this AM... brought me a new quad-cane to try out and took me out for a walk and showed me how to use it. That went well, but then I needed a shower and I did everything wrong... didn't sit to put my shoes on... walked across the floor in my wet crocks to get my clothes... the OT was freeking out. I didin't fall, but she we making sure; and I was a little shacky and teetered from side to side at times. I promised to follow the rules from now on.

Doc's came too. and the social worker. We may be able to get into Hope Lodge afterall. If we don't like it we can move into an apartment. That's down the road a couple of weeks. For now I have to get through this.

I've been tryong to relate this to an event growing up or in my recent past. The  only thing I can remember is going to Vietman... getting there with 365 days to serve...little contact with the outside world except for the "Stars and Stripes" AFTV. Lonely time. This is so much better... still hoping for the same outcome... i.e. coming out with your life intact. But having friends and family just a keyclick aways is wonderful. And I don't need no "stinkin" "Stars and Stripes", I got the Republican American, the Orlando Sentinal, USA Today!

And the best part is that by Sunday, I'll already be a "two digit midget".

Threw me a curve today

I got my regular chemo last night... during the boy's game. The this morning, my nurse show up with a Bag-O-Chemicals. Anti rejection drugs. Then I got another one that I wear for 24 hours... my man purse. At least it's not on a pole too carry... UGH!

Marie was here for a good part of the day... she just left. One of the drugs that she had to take mede her bones really hurt. So she took some other stuff they gave her. That made her very Stu-Nod and unfunctioning... you can't win. She finally got some food down and felt better,

Talked to Pinky this evening (another of the very many cousins). She's sounds great and sends good wishes my way from Greefield. I have 10 minutes to get myself ready and in bed so they can start the evening chemo.

Sorry for the short one... more tomorrow.

...Begins with the Smalllest Step.

Today was one of those small steps. After the mega-load of Adivan last night, I slept through the girls' game, but woke up and with one eye opened I was able to watch the end... big disappointment. But we still have the guys tonight. I am very thankful that they have cut the Adivan to a 1/4 of last night's dose and I can function at that level. And except for coming in from time to time for vitals, or pills or visits from various and sundry people they've pretty much left us alone.

Marie has been here since about noon... she's at the other building getting her Nupegin shots. This will happen today tomorrow and Wednesday. On thursday they start the harvest and I get them on Friday. That is "0" day. From there we will be counting UP to 100 days at which time I will we hope we will be able to get back to Orlando.

I don't think I'm going to put any weight on while I here, but the food, so far, isn't half bad. At least it doesn't have the "hospital smell", we all so know and love, huh?

Time for a nap... love youse guys.
Don

They didn't say this was going to be easy...

Checked into the Moffitt Cancer Center today and I've been getting poked and prodded since about noon. Chemo starts in about an hour, just in time for the UConn women's tip-off with Notre Dame.  I also found out that I'll be asleep for the game... the pre-med is adivan... nite, nite Donny Boy.

Becky and Ruth Ann got me here today without incident. But, I did find that our new Hyundai will do 90 on I-4. Best part is that Becky didn't attract any troopers. Sean came later, after quenching a big fire (figuratively speaking) at the Magic Kingdom. Then Marie (my sister for the uninformed) came in, having just flown in from Milwaukee. It's her stem cells that are going to do the job of fixing this cancer once and for all. She'll be here the entire week... until Wednesday for pre-meds... then they will "harvest" her stem cells on Thursday ( and Friday if need be) and give them to me on Friday. I get chemo today thru Wednesday. Thursday is a day of rest, then stem cells on Friday. More chemo on Saturday.

Keep the prayers coming, and all the good wishes. WE WILL BEAT THIS THING with your help.