Dr. Bobs Adventure

We've created this blog for several reasons. First is to keep family and friends(including Bobs' pts.)informed of Bobs' condition while he undergoes treatment for Acute Myelogenous Leukemia(AML) at HUP. You may also write to Bob by posting a comment, which I'll print for him to read. Please feel free to pass this blog site on to anyone you think may want to join us.Instructions to blog are listed under day 12, and bobs' address etc are under day 14. Click on April Archives to find both.

Friday, June 22, 2007

Day 28

Hello everyone,

Well, it's never a dull moment here at the Mazzola-Noon household. First I'll say right away that Bob is fine, but things have been hectic again. When Bob came home on Sunday the 10th, my parents went to my brothers house to stay w/ them, so they could go to Kates' graduation that Wed. They were set to go home the following Thursday and my brother called that my Mom was having palpitations........so, long story short, she was in Grandview for atrial arrhythmias, had a whole battery of tests, some meds changed and is now back in Scranton and doing fine....phew! Thank goodness my parents are taking turns w/ their hospitalizations.

Bob had an appt. at Penn on Wednesday, the first we've seen Dr. L. since the transplant, and she's very pleased w/ how well he's doing. His counts are super......137,000 platelets, hgb 11.5 and wbc 2.4. His other labs are good too......drug levels that have to be checked weekly, electrolytes, and viral titers. She did think that Bob looks a little pink, which I attributed to his good blood count, but he also has a very light redness on his back, chest and legs, sort of like a mild sunburn. She attributes this to GVHD or graft vs. host disease, which is from the new stem cells attacking Bobs own cells, because it senses them as foreign. But this is mild evidence of GVHD and something they actually like to see, b/c it means that the stem cells are also attacking the leukemia cells. So all in all, a great visit.

Bob's feeling well except for the fatigue. He actually came out w/ me today to run errands though he didn't leave the car. He's doing daily exercises that PT at HUP recommended to increase his stamina. Oh, and he's eating great too, in fact he's gained about 5 lbs since coming home.....though that's on different scales and w/ and w/o regular clothes and shoes(not to put any unwanted mental images in your heads---ha!). During the day he reads and watches the Food Network or baseball if there's an afternoon game, and usually takes a nap late afternoon. And at night he usually watches more baseball, but after I've seen Jeopardy. He will make an exception if there's poker on, as we both love to watch and play Texas Hold Em, or if we have a good dvd to watch. I've been cooking up a storm, although I took a break a few days ago and we had a Freschetta frozen pepperoni pizza(I know food talk again), which was not bad at all. And I have to say, now that Famous pizza is gone, I'm not too enchanted w/ the other places we've tried for takeout pizza(before the transplant of course).......any suggestions out there?

I think that's all that's new in our neck of the woods. How the heck are all our buddies out there? Why don't you write and drop us a line.........I know, I know, you're saying that's the pot calling the kettle. But we'll honestly try to be better about posting and now that Bobs' feeling stronger I'm gonna nag him too. Thank you, as always, for the constant support and prayers. It means the world to us both to have such great friends and family. We'll write soon.

All our love,
Bob and Mo

Bob and Mo

Wednesday, June 13, 2007

Day 19

Hi everyone,

Just a quick one to let you know Bob's okay. He's still tired, but had that confirmed as normal for 6 more weeks, by Jackie the transplant coordinator today. We have to go to HUP on Friday to see her, and than once a week til' we hit the magical 100 day mark. We just got his counts from Monday and his hgb(10.5) and platelets(77,000) both went up, and the white count went down to 2.0 which was expected since Bob is off the neupogen. So we are being extra cautious w/ precautionary measures(cleaning and food, etc.) and Bob hasn't left the house since he came home. But overall he's so happy to be home, and I am ecstatic.

Bob had a nice visit yesterday w/ his sister Santa and cousin Candy, who came bearing a feast......actually 2 feasts......one of meatballs and "gravy", and the other (which we ate last night) was braciolini(sp?) and zucchini, all whipped up by Bobs Aunt Millie, who could run circles around Lidia and Emeril. The braciolini is filet sliced thin and filled w/ seasoned bread crumbs, garlic, cheese, parsley and rolled into little logs........ooohhh, they melted in our mouths. Sad to say for Bob, he is not going to be eating like that every night. But he is eating well, just not in the quantities that he used to eat. Oops, I almost forgot about the Dream cake which is another Millie specialty amd also a bottle of wine, so thank you gals for all your hard work, and the visit.

I also wanted to thank the Teklits clan for the balloons and welcome home sign and welcoming committee, although we surprised them by actually getting home before them. Bob had a great nurse Cathy on Sunday who knew he was chomping at the bit to get the heck outta there, and she coordinated it so well, we were home by 12:30p. So thank you Family Teklits.

My niece Kate graduates tonight from SASH(St.Agnes/Sacred Heart) 8th grade and her Uncle Bob and I wanted to send our love and Congratulations. Ditto that to our nephew, and Bobs' Godson Sammy who graduates from Drexel U. on Saturday. We are so proud of you both. Way to go.

Well, a little longer post than planned, but what else is new????

Thank you for the continued blogs, cards, prayers and calls. We appreciate them all so much.

All our love,

Bob and Mo

Monday, June 11, 2007

day +17

It is wonderful to be home. my only problem is fatigue; although i feel stronger today then i did yesterday at this time. even kathy, mypenn home nurse, says that i am ahead of the curve. mygoal is to gain is to gain at least 5 lbs.; and to increase my strength. the appetite is there, but i am only able to eat small meals. i am thankful for everyone's notes and prayers. i will try and write often. love, dr. bob

Saturday, June 09, 2007

Day 15

Dear friends and family,

Kate and I are here in Bobs room. We've gotten everything packed up to take home, except Bobs toiletries and the clothes he will wear home....and the laptop, and the book he's reading. But Bob and I will manage all that tomorrow, b/c thats what we brought from home the day of admission. Kate and I have already been to the outpt. pharmacy and picked up Bobs meds that he will need at home, and Bob and I just got back from a walk. He did 3 laps around the nurses station, which my husband informs me is ~ 1 furlong, since 17 laps = 1 mile.........a tidbit of useless information if I ever heard one, right Bill? So now Bob and Kate are reading....I didn't think to bring my book down, but I'd rather update you all anyway. Bob says he will write a blog from home tomorrow [you know it's really difficult to type when your fingers are crossed!!].

Bobs white count today is 9.3(still waiting on the anc), platelets are 67,000 and hgb is 9.5.......again these are great numbers. We expect the wbc to fall shortly though b/c the neupogen was stopped yesterday. So Bob's going home on an anti-viral med, an anti-fungal med and the cyclosporin(anti-rejection med)......no antibiotic this time, but he is going to confirm that w/ Dr. L's office on Monday.....and of course his ususal BP meds.

Well, I guess that's all for now. We're just chillin' for a little while longer than I have to get Kate home for a graduation party......she graduates on Wednesday from 8th grade. I'm hoping to be there, but I'll have to see how Bob's doing. Anyway, enjoy the rest of the weekend, and Bob will write tomorrow. Thank you for everything.

All our love,
Bob and Mo

Friday, June 08, 2007

Day 14

Well, praise the Lord and pass the Clorox handiwipes..........Bob is coming home on Sunday. He had his Hickman catheter removed this am in radiology[scheduled for 8am and done by 8:20a]. His white count this am was 6.7 with an ANC of 4000.....these are normal results!!!! Bob hasn't had numbers like that since before the myelodysplasia. His platelets were also up over 40,000 and hgb was 9.9. He's doing laps around the nurses station and even did 2 flights of steps w/ PT today. This is such great news, but I can't help feeling like the roller coaster is going to go down a very steep hill any minute now. I guess I'm just not used to getting good news, or having it actually last for any length of time. But right now I am thanking God again for Bobs donor and definitely feel the need to send him another thank you card. Want to thank everyone of you out there too for all the support, and I'm thrilled to be able to share this happy news w/ you all.

I'm gonna end here...have had a long day, but I'll be going down tomorrow w/ my niece Kate[who lovingly volunteered to help me empty out Bobs room, though we don't have too much "stuff" this time around], and we'll write to you all than. Keep cool and have a great weekend.

All our love,
Bob and Mo

Thursday, June 07, 2007

Day "Lucky Number" 13

Well, now there really is talk of discharge, possibly by the middle of next week. There are things to take care of yet, like removing one of Bobs lines, and if Bob has his druthers it would be the Hickman. He feels that the PICC line in his arm is easier b/c he can wear a plastic sleeve over it to shower. I worry that since it is almost a year old already that it will not last as long as the Hickman. I guess we'll get some advice on that. If it is the Hickman, than that must be d/c'd in radiology which won't happen over the weekend. Plus the attending, Dr. Hoxie has to speak w/ Dr. Luger, as she is the one who has the final say in OK'ing the discharge orders. At any rate there is still much to be done. I feel rather disconcerted as the timeline we were always given was at least a 30 day stay, and engraftment never happening til after day 14.....not that I'm not thrilled about getting Bob out of here and home, trust me, I am. But once there's a plan, I'd prefer not to deviate from it, or at least have the deviation explained fully..........I suppose that Bob has finally rubbed off on me after all these years.

Anyhoo, its all good news, and I'm thanking God for that. Also thank everyone out there for all the prayers and good vibes you continue to send our way. Thank you too for all the cards, which have brightened up Bobs room. He is sleeping right now........a little pre-prandial nap today for a change..........that wild guy, he really likes to live life on the edge. Actually he already rode the bike so I guess he's tired. I still have to catch him up on the blog and e-mails, so maybe well be back later......if not than manana.

All our love,
Bob and Mo

PS......to KM, I just read an article about "wiiitis"..............aches and pains from playing Nintendos video game player "Wii".......have you been over"wiiing" it lately???

PPS............Bobs' nurse was just in and we began the "recontamination" process.....which means that we got to hug and kiss w/o gloves, gown, mask.........ooh la la! Cheek to cheek hugs.......too bad Bob didn't shave today! Also, Bob will get to walk in the hall in a few hours wearing a gown, gloves and mask!!!! YAHOO! We are on our way!!!!

Wednesday, June 06, 2007

Day Plus 12

Hi everyone,

A quick note to let you all know that Bob is doing great. His wbc is up to 6.7 and there has even been talk referring to the "H" word (home). But Bob and I both agree on the chicken-counting-hatching thing, and practically say in the same breath.....let's just pray it continues. His cyclosporin drip has been changed to the oral form though...also a good sign that they believe his counts are up to stay. What we don't know and won't know for several weeks however is whether or not the new stem cells/transplant have taken hold or if it's Bobs own innate marrow coming back. That's going to take a DNA test and they don't do that for at least another week or more.

So, that's it for me. I pulled a neck muscle playing tennis yesterday, which is why I didn't blog, and I can feel it tightening up as I write this. I'll try to blog w/ Bob tomorrow from his room and get some comments on your "stuffy"tales. MDF, that was Kathi M., your old e-mail pal writing. Thank you for all the prayers and support.....you are keeping us going.

All our love,
Bob and Mo

Monday, June 04, 2007

Day Plus 10

Hi everybody,

Hope you all had a good Sunday and managed to stay dry. I didn't come down to HUP yesterday....my brother Tom, sil Anna and niece Kate came and kept Bob company in the afternoon. I also prevailed upon them to transport linen, clothes and a cooler of pudding and yogurt. So I thank them for all their help w/ that, and of course for visiting Bob.

Bob is doing very well. He is the talk of Rhoads 7......whenever I'm out in the hall someone on the staff always makes a comment about how they heard how great he's doing. I did get a little nervous yesterday am, b/c Bob told me he had a fever Saturday night [only to 100.3] and they did a chest x-ray, cultures and changed his antibiotics(ABX). Fortunately that was the last fever, and today his wbc is up to 2.0. Although that is prolly from the neupogen,and will fall again after Bob gets his next dose of methotrexate[chemo drug to suppress his innate immune system], it's still a good sign that the marrow is producing white cells. In fact Dr. Pearl is off rotation now, and told Bob yesterday that when he's back in 2 weeks, he expects Bob will be home already. So, from his lips to Gods ear, as they say. Plus I'm a "don't count your chickens before they're hatched" kinda girl, and won't mind if Bob is here longer, as long as there are no serious setbacks. So I'd prefer to take one day at a time [Lookout,here come the platitudes again].

Right now Bob's doing sudoku and waiting for lunch. His mouth is a little sore, but he's still able to eat his HUP meals, and as I mentioned he's supplementing those w/ pudding, yogurt and cheese sticks. The nutritionist was in a little while ago and though Bobs lost 4 lbs. since hes been in, his lab values are all good(protein etc), so she's happy w/ his status, and actually said the avg. wt. loss is 10 lbs.

Also in this morning were our gal Deb T. and her hubby Joe. Deb has started her outpt. chemo here at HUP, and looks much better than 2 weeks ago. She's fatigued, and her injection sites are painful, but other than that (and that's enough)is tolerating it well so far. Hang in there, Deb. We're all pulling for you, and thanks you two for making the walk over to see Bob.

Okay, I think you're up to speed. Thanks to all for the cards, blogs, e-mails, and most especially the good vibes and prayers. You are definitely helping to make this much less of an ordeal, and we thank you.

All our love,
Bob and Mo

P.S. to MDF, Bob and I both love your "newsy" blogs......besides loving the updates on your lives, we always get a laugh, and since you write like you talk, I feel like you're here in the room. Keep 'em coming!

Saturday, June 02, 2007

Day Plus 8

Hi all,

I'm here writing from Bobs room again. He's feeling better today......actually ended up getting 2 units of blood yesterday........and looks better too. He's going to ride the bike soon, presently watching college softball and having his daily post-lunch rest.....this man is definitely a creature of habit. He's caught up on the blogs and e-mails and so....to Y and L, Bob says thanks for the note and I miss being at game night,and I don't need anything if you come down........to Debbie, Bob says I'm not a man of steel, that's Superman, but thanks for the compliment, and tell Kathy I say hello.........and to KM he says I was an Old Spice man, but now I only use their deoderant [we're getting pretty personal here aren't we, writes Bobs secretary], b/c you're right about Mo buying me fancy-schmancy after-shave and cologne.[hrrmmp!].......and thanks to Bill, Anne and Katie, and Deb and Joe for their visits this week. It was good to see everybody. And to everybody, thanks as always for all the prayers and words of encouragement. It means a lot to me[and me].

Well, Bobs getting up to get on the bike, so I have to go get my whip out!!! Of course I can't use it on him unless I wipe it down first w/ a bleach handiwipe. Oh, well. Enjoy the rest of your weekend, and we'll be in touch.

All our love,
Bob and Mo

Friday, June 01, 2007

Day Plus 7

Dear friends and family,

I'm writing from Bobs' room. Just got him up to date on your latest blogs and e-mails. He's feeling kinda puny today, but not too bad. His hemoglobin is down to 8.3, and he also had platelets this am so the benadryl pre-med is making him tired too. Dr. Pearl was just in and said they'll give Bob some "reds"(blood transfusion) today also. I said too bad he wasn't talking about a shiraz or pinot noir. Normally they wait til the hgb is below 8.0, but Bob doesn't want to exercise b/c it makes his heart race, plus the fatigue, so he will get the rbc's today. The wbc is still holding at 0.9, but Dr. Pearl said that for all intents and purposes we could think of his count as being zero, since what's there isn't going to function normally. Bobs also getting a coating on his tongue, which could be the beginning of mucositis, although he's not having a sore throat or any problems swallowing. So, overall he continues to hold his own.

I was going to ask Bob to comment on your blogs, but he's actually sleeping right now. I know however that he was thrilled to hear your clean bill of health Joanne, and me too. You must be so ecstatic. Congratulations.
We were also both very impressed w/ Marks' "offensive player of the year award", Mare, especially being a freshman. He must be a great ballplayer.....Donna D, hope your Moms move goes smoothly...Bob got a chuckle from your "Mary Elizabeth" comment.

And now I need to move so Bobs' floor can get mopped. We both thank you all for your continued prayers and support. I'll write again tomorrow.

All our love,
Bob and Mo