Day Plus 5

Well, Bob continues to do well. The MDs expect his counts to be at their nadir by the weekend.....the wbc was 0.9 today, and his hgb was just 9.0, platelets were 24,000. Bobs feeling a little punk, but still looked good, and still is eating well. I did chastise him for only riding the bike once yesterday though, and he ratted me out to Dr. Pearl, who took Bobs side and said he's tired b/c all the chemo is catching up w/ him and 7-8 mins a day on the bike is good.....so, I can't win. I just don't want him to lose ground while he's still feeling okay.

That's all for tonight. I want to call Bob once more tonight, and than I'm heading to bed. I've got an early car appt. in the am, so our sis-in-law Anne is going to visit Bob tomorrow. He really is lonesome on the days I'm not there, although so far I think there's only been one day when he hasn't had any company and that was yesterday. If anyone wants to visit, please call or write and let Bob or I know. A visit on Tuesdays would be most appreciated since that's my morning to play tennis which Bob (and my tennis partners) insists I keep up with.

Thank you everyone for all the blogs, prayers, e-mails, books, games, calls and good wishes. We appreciate everyones' thoughtfulness, and thank God for all of you every night.

All our love,
Bob and Mo

day plus 4

thank you everyone for your prayers,blogs, and e-mails. as dr. pearl says"boring is good". then iam very good. ihave no other complaints. for mdf: cal poly is a well known school in sport circles; iwas stationed just south of there. san luis obispo is a neat town. my love to all. dr. bob

Day zero plus 2

Happy Memorial Day Weekend,



This is Bobs secretary writing.....guess I should say typing. Bob says "I'm feeling good. My white count is 4.0 today, but the attending, Dr.Pearl says that doesnt mean too much, b/c I'm getting neupogen(white cell stimulant), and my own white count will still continue to bottom out.[Mo says,"I'm very confused by that....dont understand the rationale, but back to Bob"]. "I want to thank everyone who has blogged or e-mailed, also Anne and Bill for the drinks and great visit. And of course all your prayers, which I really appreciate. Thank you everyone.

Mo says Happy Memorial Day and thank you to all the vets out there who are reading this. Our entire country(and many other nations too) owes you a debt of gratitude.

Bob's looking good and still feels well. But the 2 of us keep using that word....still....like we're waiting for the other shoe to drop. We know it's going to fall, just have to pray it falls softly and not w/ a bang. But one day at a time, and so far so good.....enough cliches in this post yet?

Bob's watching the Phils right now and Just put the head of the bed down, so I think he's goingto snooze. He's on a schedule for exercising(his own, that is)and wants to ride the bike at 2p. He's also doing his neck and shoulder routine, as well as stuff for his legs, like quad tightening.
So he's being a good patient and of course part of that is eating. No trouble there yet, and he continues to find the HUP trays somewhat palatable(Ithought only edible, but he says it's a step above that. His fridge is also stocked w/ yogurt, cheese stix, cottage cheese doubles and lots of bottled water and 7up. It's important right now that Bobs protein levels stay up as that helps the engraftment of the new stem cells. So he's really trying to eat well now, while he's feeling good.

Well, I better go, almost time to get this guy on the bike. UH-huh, he just said let me nap for 15 minutes than I'll get on....my kind of exercise man!!!

Thank you everyone for everything. We'll write soon.

All our love,
Bob and Mo

plus 1

Thank you all for your prayers. i am doing fine,just a little tired; but agood tired[if you can understand that thought]. today i started nupagen to stimulate the new white cells,and methotrexate to help me accept the new cells. thank you again. bob m.

WHEW!!!!!

Hi all,

Well, this was a tough day, but Bob came through like a champ. he was given benadryl and tylenol early this am b/c he needed platelets,(his platelet count was actually still good at 44,000 but they like it to be over 50,000 for the transplant) so he was a little sleepy when i arrived. he got the platelets w/o a problem, though he did get a few hives. So we just relaxed in the am. We had a nice visit w/ HUPs chaplain(who I am doing a great injustice to as she actually has many theological and socialwork degrees,and is I believe the head of the Spiritual Ministry here),Kava, whom we knew and loved from Bobs last admission and it was great to see her again. She's also a very calm person, w/ a calming influence, which was much needed today. Bob was given tylenol and benedryl again this afternoon before the infusion of stem cells, which started at about 3:10pm and just finished a short time ago. It really was as anti-climactic as everyone said it would be(which was surely alright w/ me). Bob tolerated it fine, and didn't even get any hives like he did w/ the platelets. In fact he got up about halfway thru and is still sitting in his recliner reading a book.

So, the good Lord surely heard our combined voices today. We thank you for all the love, encouragement and prayers. Thank you too for the e-mails and blogs, and cards(Aunt Millie and Candy). Well be in touch soon....actually this is coming from bobs room, so i hope thats one problem thats licked, and he'll feel good enough to write tomorrow.

All our love,
Bob and Mo

D-Day

I just wanted to let you all know that we have a time. Bob just called and said the stem cells are due to arrive at 2:30pm. So, please stop and say a prayer for Bob if you think of it, and direct all your positive energy HUP-ward. I am going down shortly, and will write tonight when I get home. Bob sends his love and thanks too.

All our love,
Bob and Mo

D Day - 1

So, day zero is almost here. This week has flown by, although not to Bob. But he's ready for tomorrow and still feeling good. His wbc's were 1.5 today, and he still didn't need blood or platelets. The immunosuppressant drug cyclosporin continues(IV drip), and of course all the other meds I mentioned yesterday. Bob was in good spirits today, and seemed quite calm, considering....I would be a basket case if it was me. But he's been so positive all along about this procedure, and I know first hand what a difference that can make in the outcome. Back in my ICU days, it always seemed like the pts. who were the most anxious or scared always did the worst. But I have a feeling tonight is gonna be a tough one for my honey. He is also very bored.....he actually called me tonight and we talked for 30 mins or so.....I think that's a phone record for us. He even sent me an e-mail of the comment he made on the blog! So if anyone wants to e-mail him, feel free(mobobmaz@msn.com). Bob also told me to blog his room phone(215-615-8119), as he wouldn't mind a little conversation. But I'm going to ask that noone call until Saturday/Sunday, when we see how he's feeling after the procedure.





Oh, Physical Therapy came in today and brought a stationary bike......now that was something to see. It's been at least 10 years since I've seen Bob on a bike. But he only rode it for 1min,7 secs. and it broke. See, they've got lots of great things and ideas here at Penn, just none of them work. Just kidding! Really, it's just the pedal that needs to be fixed. I hope it's repaired by Sunday. They want Bob to get up and OOB(out of bed) every day, "no matter how many symptoms you have and are feeling like garbage", b/c it's so easy to get deconditioned. And when you are feeling like crap and confined to the same room for over 1 month, you really need to push yourself to get on a bike or do your leg/arm/neck exercises. So he may need some encouragement w/ that later on, but he's been doing his exercises all this week so far.





And now I'm starting to feel incoherent and like I'm rambling, so I must be tired. A few PS's......Anne, I got your message. Bob enjoyed your chat. I will call you tomorrow.....Kathi M, I didn't understand the comment about Debbie and the prez and more responsibility. I mustn't have been in on that one.....Kris, the homeless friend Deb refers to is the one that used to visit her in the middle of the night at HUP. And the last thing I wanted to tell you(in more ways than one) is that our dearest friend Debbie has learned that she is no longer in remission. She has decided to do a clinical trial at HUP which will begin next week and will consist of chemotherapy as an outpatient. I have to tell you all that despite what Debbie is going thru, she never fails to ask Bob and I what she can do for us, in fact she and her son Mike took Bob a microwave on Tuesday before she had her appt w/ her MD.. She is truly the most extraordinary person I know. She will spend this weekend at the shore w/ her family, and we wish you a wonderful time Deb. Enjoy all your babies, big and little, and have a slice of M&M for me, or some of Angelos' pasta.



Well, that about wraps it up. I know you've been keeping Bob and I in your prayers, and we thank you. If ever there was a time for prayer in our lives, this is it. We pray for all of our friends and family too, that God blesses and keeps you. I will be back tomorrow to let you know how Bob does.

All our love,
Bob and Mo

Bob writes a comment

Hi,

Just a quick note to tell you all that Bob wrote a blog under the comments. He actually got online in his room today, but couldn't get to the dashboard to write a post b/c he didn't have the new password, so he wrote under the comments. I'm going to go get something to eat w/ my parents, and than I will catch you all up later tonight.

All our love,
Bob and Mo

D Day Minus 2

Hi everyone,

Well, our guys feeling okay. His counts are dropping.....wbc is 2.0, but hgb and platelets good enough that he doesn't need any transfusions. He's getting a little restless in the isolation, so he's trying to keep his mind occupied, but he's also pretty fatigued from the meds. Both chemo drugs are done, and he has started on the immunosuppresant cyclosporin. He's also on 2 antibiotics, an antiviral agent and an antifungal agent. Also something called glutamine which is supposed to sterilize the bowel(in as much as it can be, I guess). He also has a special mouthwash and he's taking his antibacterial shower every am. So here's hoping all the bases are covered.

Bob's been reading and watching TV, and would like to blog, but the HUP computer guy never came, so he is still not online. We tried ourselves today and were going to set it up even if we got a warning, but it never even let us get that far, just kept saying no connection. AHHHHH! I've said it before, I LOVE computers. Anyway, I reminded him about solitaire and such that you can do w/o the internet, so he was playing spider solitaire when I left. As before, he said the nights are the hardest times.....your mind wanders to places you don't want to go. And also like last admission, there are interruptions thru the night for vitals, and labs(morning labs are drawn at 3am, so the docs have the results back when they make rounds)that make it difficult to sleep. Bob has a bunch of dvds that his bro. Bill and s-i-l Anne took down on Sunday when they visited, and today I took down Queen: Live at Wembley Stadium. Bob loves the group Queen, but kept saying didn't we already see this movie?(The Queen). Geez, that chemo is getting to more than his white cells, me thinks. He also has 2 books(and thank you to Bill T, I did get your message and will be over to get the books soon, I hope), but the one I took in today he has to read wearing gloves.

So, we are on target for the transplant on Friday. I also should probably explain about the actual transplant, b/c a few people have asked me about the "operation". The stem cell transplant is actually a lot like getting blood. We're told the stem cells look like pink platelets(usually straw-colored). There may be 1 or 2 bags, and it will take approx. 1-2 hrs. to infuse. This is probably going to happen Friday afternoon, since the stem cells are taken from the donor that morning and flown to HUP(could be from anywhere in the continental U.S.), and Bob will get them fresh. So George, we already know that they will not be treated w/ preservatives or antibiotics, but Bob did chuckle at your suggestion. They can be treated w/ preservatives if the donor/recipient schedules are conflicting(like our gal Deb who had the shingles when she was supposed to be getting her sct).

At any rate, that's the procedure. And we are on schedule. So please keep us in your prayers and direct your most positive vibes to room 7008 Rhoads. But, I'll be in touch before the sct. Hopefully tomorrow, computer geek guy will come to 7008 and direct his good vibes to Bobs laptop. Than we will be a'bloggin.

All our love and thanks,
Bob and Mo

Cleaning Day

Good morning everyone,



Well, we're here in the family lounge on Rhoads 7. Bob just finished up a bag of platelets and now he is getting some IV Magnesium(Mg). The chemo as you may remember knocks the platelets down and the anti-rejection drugs lower the electrolytes, like potassium, mg. and sodium, so they are monitored very closely. Bob has been here since 10am and we'll prolly be here til sometime after 2p. I brought down a suitcase full of linen and clothes, all of which were washed in hot water, dried on high heat and immediately packed into hefty ziploc bags. Before the bags can go into the room they have to be wiped down w/ bleach wipes. I'm not certain if the food restrictions will start now or if that can wait until after the sct on Friday....we're going to ask. But I did find out that Bob is allowed cards....he'll just have to wear gloves when he reads them. So his address is:



Rhoads 7 Room 7008

Hospital of the University of Pa.

3400 Spruce St.

Philadelphia, Pa. 19104



Well, Bob was looking a little bored and I saw a dvd of Happy Feet, unfortunately the dvd wasn't in the case. But I did find a tin of wooden puzzles....the kind w/ wooden pegs that you find in diners....we always used to do them at the Airport Diner in Ocean City, where we always stopped for lunch on the first day of vacation, b/c the house wasn't ever ready til 2p. Anyway, I digress. Well in the short time it took me to write that Bob has abandoned the puzzles. Guess I'll try after I'm done here.



The second chemo drug has started and Bob is still feeling okay. I don't know what his counts were today, except that the platelets were less than 20,000.

He's just had his vitals done and they're good...no fever. He's getting a little sleepy from the benadryl and is probably going to nap until lunch. At least he's in a recliner.



Sooooo, so far, so good. Please keep sending those prayers and good thoughts our way so that continues.

Bob says hello and thank you for all the prayers. Talk to you soon.



All our love,

Bob and Mo

A Quick Note

Hi all,

Well, yesterday is starting to catch up w/ me so I'm going to be brief. Bobs doing well, but he didn't receive the first round of chemo(fludarabine) until nearly 4p....that's 16 hours behind schedule since we were told it would be done at midnight.......aaah....HUP world! We were also told today that the massive room cleaning is to take place on Monday, after which he begins his strict isolation.......we were told that wouldn't occur til 1-2 days before the transplant, i.e. Wed/Thurs. I wish they knew how patients and their families believe everything that's told to them.....so many inconsistencies....it's enough to make you lose confidence that all your caregivers aren't on the same page. I didn't make any noise about this to Bob though b/c he seemed more relaxed today. He was watching........what else....ESPN today. And he was watching the Preakness when I called to say I got home. We searched thru all the channels looking for the Food Network which Deb swears she watched at HUP, but they don't have it now. Actually, we were like 2 morons going thru all the channels, and I would write down on his blackboard what each channel was.........which was taking forever b/c every single station we flipped to had commercials and we kept having to wait for the shows to come on to figure out what the channels were. This may not sound funny to you all, but I am snorting here when I think of how idiotic we must've looked.I finally asked the nurse if they had a list somewhere and she didn't know, and than it finally came to me to check the TV, and sure enough there was a menu of channels.(So much for higher education.....duh).
We tried to get on the blog today, but you have to go thru Penns' network called UPHS-Guest, and when we tried to sign in we kept getting a message that it wasn't a secure site and were advised not to go there. The nurses think it's okay as long as we weren't going to shop online and use a credit card, (I said I'm the one w/ that problem, not Bob)but there is a HUP computer geek guy who will be in Monday and he can set Bob up and answer any questions . So that's why he hasn't blogged yet.

Oh, I ate a cheesesteak at "Johns Cart" and it was very tasty. And Bob continues his infamous ingestion of HUP delicacies........tuna salad, chicken parm, lasagna and cold cereal. He was not happy however w/ the dry, tasteless pineapple upside down cake as it was one of his Dads' favorites and his Mother could make a mean one. Of course this is also the man who, when he was a young boy of 6 or 7 would walk in the door from school and tell his Mother he could tell/smell that she burned the chocolate pudding.......what an epicurean...what a brat! But he's my big brat now, and we both say good night and thank you. Talk to you soon.

All our love,
Mo and Bob

For the ever inquiring minds..the view is of a large quad of the campus......those beautiful brick buldings(sorry I'm not an architecture expert) with lots of tall leafy green trees and miniature students running to and fro on the sidewalks....very pretty indeed.

Another Late Admission Special

Well, it was another long day at HUP. We arrived in record time this am, at least by rush hour standards....went quickly thru admissions and down to IR. Bob had his Hickman catheter placed without incident, and I was visiting him in Recovery by 11:00am. He had a little lunch, and I had a little lunch at a street vendor, and we heard by 1pm the good news that he had a room on Rhoads 7, and than the bad news that the current occupant would not be leaving until 5pm. So Bob snoozed and read, and I snoozed(while sitting in a wheelchair) and did sudoku. The room was cleaned by 5:45p and we waited another 15 minutes for transport. When the nurse called them,and they said they would be another 20 mins., I got up and said I'm taking him to his room, I know the way, and put Bob in the wheelchair w/ his suitcases and cane. At that point one of the nurses took pity on us and said she would take Bob to his room.

He is in room 7008 this time around and it is one of the larger rooms reserved for the sct pts. Bob's also got a great view this time and a large bathroom w/ a handheld shower. Also a VCR, and mini-frig. And he actually had the TV turned on already!! I don't know if you remember but last admission he watched zero TV the whole time he was in.

So he's all settled in, and had some dinner. He's got a very sweet nurse and we already met the resident who was also very nice and very young and extremely polite. They weren't sure of the time the chemo was going to start. We were told it would be midnight tonight, but they didn't confirm that, so I won't know til I talk to Bob tomorrow.

And I'm gonna call it a night myself. My niece Meg is here tonight, and my brother went to Scranton today to pick up my parents. They're going to stay w/ me for a few weeks which will be good for them as well as me.



I'll write soon, and hopefully Bob will be writing too. Please keep those prayers and good vibes coming...this is just the beginning.

All our love,

Bob and Mo

All our bags are packed

Dear friends and family,

As the song goes all Bobs' bags are packed, though I'm not sure how ready to go he is. We've both had an anxious day today, so it's a good thing it was a busy one. We had a bunch of errands this morning, and Bobs nurse from Penn Home Infusion was here for her visit(Hi Kath, we're really gonna miss you these next few weeks). Than we had our air-conditioning check-up, and Bob packed up his laptop, CD's, games, toiletries etc., and I packed his clothes. We than had a very nice dinner out at the Mainland Inn w/ our best buds Deb and Joe T. Deb's been feeling a tiny bit better these past few days(your prayers are working) and I think even if she wasn't, would've pushed herself to get out for Bob. So I thank them for that, and always for being the best friends anyone could ever ask for.

So that was our day. We report to admissions at 9am tomorrow and Bobs' line is scheduled to be placed at 10am in Interventional Radiology(IR). From there he'll go to his room, and we're hoping that is early afternoon. But let's not forget we are moving to HUP world and every clock now runs on HUP time. Which basically means that if you have zero expectations you can't be disappointed. So when Bob said the transplant coordinator assured him there was a bed saved for him on Rhoads 7, I rolled my eyes, and thought to myself...you poor sap, you don't really believe that do you...just kidding, but not really. But I'll try to go with the flow at any rate.

Bob wanted to write, but he is pretty pooped right now, so I want to pass along his thanks to all who e-mailed, called and blogged(loved the cheer Miss K. and Bob really chuckled at that, but I think he liked your Black Panther salute better!) And of course thanks to all who remember us in your prayers. I know I've said it before, but we really are so blessed to have such wonderful support. You've definitely helped us to get this far, and I'm so thankful when I read you'll be "cheering us on" as we start this phase.

So that's all she wrote(for now). I'll try to blog at least every other day. I'm thinking that with the internet in the room, I'll be able to do it from there, and of course if Bobs feeling up to it, he'll be writing directly. We'll be in touch.

All our love,
Bob and Mo

Gearing Up

Hey everyone,

Well, I've finally got a free day to catch you up. Last week was crazy busy. We started w/ a trip to HUP on Monday to see Dr. L, where Bob signed the consents for the sct, and had 17 tubes of blood drawn.......yes, that's right, 17!!! We talked w/ her a bit about the transplant, and she's "cautiously optimistic" it will be successful. She would like to see a lower blast count on the bone marrow, but doesn't feel she can get it any lower than it is, which is 15-16%. I can't remember if I told you that already or not. It was reported as 12% originally, but after Dr. L checked the slides herself she corrected it to 15-16%. But as she says we do it now or we don't do it, and Bob said "we're doing it!!!!!" So full steam ahead.

On Thursday we went to the sct class,(which I have to tell you Bob tried to get out of on the basis of being an MD. He doesn't play that card very often, but neither of us really wanted to hear about all the possible side effects. Well, it didn't work anyway...no class=no transplant). So we trekked downtown again and as expected had the bejeezus scared out of us...or at least I did. I mean, I remember about a lot of the possible adverse occurrences from when Debbie was going in, but having it all refreshed 1 week before Bob goes thru it just isn't kind. Aside from the side effects from the chemo, the biggest danger is from GRAFT VERSUS HOST DISEASE or GVHD. This occurs when the graft or donated marrow doesn't recognize Bobs own healthy tissue, but senses it as foreign and starts attacking it. Well, I don't want to get more technical, and I'm certainly not going to describe the symptoms, but it could make Bob really ill. A little GVHD is actually a good thing though, b/c it lets us know that the new marrow is also attacking the leukemia.Anyway a lot of the class was about that, and like a bad song you can't get out of your brain, this is stuck in mine.

We also had a very informative session with the nutritionist. Yikes, EEK! and ai, yi,yi! Immediately after the sct and for at least 100 days after he comes home, Bob can only eat food that is prepared at home and within one hour of being cooked! Absolutely no take-out, no restaurant food, no bakery-made food. In other words nothing that was handled by anyone but us. Not even a pizza or a cheesesteak. No leftovers unless they're frozen right after they're made...and only in small, shallow containers, b/c big or tall containers take too long to freeze. Sheesh!! And of course no raw fruit or veggies. Thick skinned fruit like melons are okay if we scrub the rinds before cutting them. The coffee-maker has to be cleaned with vinegar after each use. No multi-serving containers of any foods like cottage cheese or yogurt...only individual serving sizes. No jars of mayo or mustard or jelly that you stick a knife in---only squeezy containers. Bottled water only. I mean there are 4 pages of restrictions. Geez, I'm getting tired just thinking of it. This is really gonna make my brain work overtime. I imagine we'll get used to it though and it'll become second nature.

I hope all this grousing doesn't make me seem like an ungrateful brat, b/c I'm anything but. I thank God this procedure is available and for all the HUP staff who will implement it. Not to mention the donor, whom we are told is a 31 yr. old man. That's all the info we're allowed at this point. If after 1 year he and Bob both agree, they can exchange personal info. In the meantime we have written to him thru the transplant coordinator at Penn, to thank him for his generous and thoughtful spirit.

Gosh, I am rattling on today...guess it's my "nerves" as my Mother would say. And a belated Happy Mothers Day to all the Moms out there. We spent the day w/ Bobs Aunt Millie and cousin Candy who whipped up a feast of brie, lamb, pasta, roasted veggies and ricotta cheesecake. I haven't seen Bob eat so much in a very long time. His pants were actually tight and he complained(in a good way) about overeating all night. It was a lovely afternoon and I'm glad Bob was feeling up to it, and I thank them both for all their hard work, although I know they would do anything for Bob.

So, we're just tying up loose ends all week. We report to admissions at HUP on Friday at 9am. From there Bob goes to have another Hickman catheter placed, since the line he has in now won't be enough for all the drugs he'll be getting. Than after the line is in he'll go to his room. He'll be on Rhoads 7 again. I'll let you know what room.The chemo will start on Saturday...2 different drugs for 4 days, than 2 days of rest and than the actual infusion of donor stem cells will take place on Friday the 25th(my brothers birthday, and also Bobs new birthday in a way). Than the timeline is discharge on day 30, or zero + 30 as HUP refers to it(like D-Day) with the day of the transplant being day zero. Of course, this is if everything goes according to Hoyle. The big thing everyone will be focused on is "engraftment", which is the new stem cells actually taking hold and growing in Bobs marrow. We'll know that's happening when his blood counts start coming back to normal. That's expected to occur sometime between days 14 and 21. In the meantime Bob will be in strict isolation. He'll be kicked out of his room the day before the transplant so it can be cleaned....walls, curtains, bed, chairs...the works. Every morning after that, he'll have to take an anti-bacterial shower and have his sheets changed. And of course anyone going into his room will need to gown, glove and mask. For now we're going to limit visitors to family, and of course nobody with even a hint of a cold etc. will be allowed. But 30 days in the same room is going to get tiresome to say the least, so I'm hoping that Bob will feel well enough to have more company. And I'm hoping too that you guys and gals are going to blog to him when he's in. I understand the reluctance to write now, but it is nice to get feedback and know these posts are being read. And he really enjoyed your blogs the last time around. I'm not sure about sending cards. I know everything that comes into the room has to be wiped down w/ bleach wipes, so I'll ask about that and let you know.

Well, I've gone on too long and probably have broken the "too much information" meter, but again, I think that's my anxiety, and it seems to help for some reason, to put this into words. I read this and think...we'll be okay, Bob can do this. He is one strong-minded(politically correct term) individual, as most, if not all of you know. I know he's in a positive frame of mind and will do his best. And w/ your prayers and Gods' help I will have him home by the end of June.

So, wish us luck, and please keep Bob and I in your prayers. I'll be in touch.

All our love and thanks,
Bob and Mo

And a P.S. to ask for renewed prayers for our girl Deb who's going thru a rough spell right now w/ fevers and such. She has been so strong for so long and I wish she could catch a break. Please keep her in your prayers as well.