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.

Tuesday, May 30, 2006

Penn Visit

Hi everybody,

Bob saw Dr. Luger today and had another bone marrow biopsy done. She was quick as a flash as usual, and he's only having minor discomfort at the site. This time brother Bill got to watch, as he took Bob down this morning. I've still got a nasty cough and lo-grade temps, so we didn't think it was a good idea for Bob to be confined in the car w/ me, not to mention the fact that practically every patient on the 15th floor is a chemo pt. who's probably immuno-compromised. So a huge thank-you to Bill( and Anne for volunteering Bill) for coming from NE Phila. on his vacation day and schlepping Bob back and forth. Thanks to Anne also for the complete chicken dinner, which I froze, since Deb T.(just out of HUP herself on Saturday) also dropped off fried chicken for our dinner. We are truly so blessed with wonderful family and friends, and I am getting VERY SPOILED, and I thank you one and all.
Dr. Luger originally told us that depending on the results of this BMBx, she would decide what clinical trial to put Bob in. Today however, she already seems to have her mind made up, and had Bob read over the protocol when he was there. She will than fed-ex the drug to us next week. I'm not sure of the name, but the drug is a "retinoid" designed to decrease the need for blood and platelet transfusions. If that is the case maybe we could get back to some semblance of our life before leukemia. Bobs' counts were good today...hgb all the way up to 10.7 after those 2 units of blood on Friday...platelets were 27,000 one week after his last transfusion, so that's holding very steady....and the wbc's are 2.7 with neutrophils >600, so that means it's still okay for Bob to be out in the "real world". Overall a positive visit. Bob wasn't given any time frame as to when we would get the results of the BMB, but he says he'll start calling down there on Thursday if we haven't heard by then. Although Dr. Luger did say that she doesn't expect that the leukemia will have changed, I'm still hoping against hope, and praying that it has. And as always, ask you all to do the same.

Thank you for the cards, blogs and calls. I know I sound like a broken record, but it means so much to Bob and I.

All our love,
Bob and Mo

Monday, May 29, 2006


Hi everyone,

Hope you are all enjoying the long holiday weekend. Today promises to be a hot and humid one. Great if you're at the shore, as are Megan and Debbie. Hi gals! So, just to give you an update...on Friday Bob received 2 units of blood at CMMC as his hgb was only 8.1 after one unit on Monday. That went well.
On Saturday, Bobs' brother and sis-in-law, Bill and Anne stopped in for a visit(after wiping out their local bakery of cherry pie, cheesecake and sticky buns). Yesterday my family, Tom, Anna and Kate, came for dinner. Bob had a flank steak recipe he wanted to try and it was mahvalous.
Today we're invited to Toms', but somewhere along the way, I've picked up a cold....started as a headcold, but is now in my chest, and I have a nasty cough and fever. So we're just going to keep it quiet today. I really wanted to get some stuff done today too, but it will have to wait. I think Bob could use a day of rest also, b/c he continues to be bothered w/ the neck discomfort, and now on top of that his bad knee is "locking" on him intermittently. When that happens he can't even take a step. So we're a good pair right now.
Well, tomorrow we go to Penn for an appt. w/ Dr. Luger. Bob's going to have another bone marrow biopsy, and from those results she will decide what clinical study will be most appropriate and beneficial for him. So we'll be back with another update with that info as we get it. In the meantime, please keep us in your prayers and send all your best thoughts and good vibes to Penn Tower tomorrow morning. We'll let you know how it goes. Thanks for your continued support.

All our love,
Bob and Mo

P.S. To The anonymous author of the 10th blog on Thursdays' post...what is The Society referred to ? Cancer Society? Leukemia/lymphoma society?

Thursday, May 25, 2006

Update from Mo

Good morning everyone,

Just thought I'd catch you all up, though not too much is happening. As Bob wrote, Monday was a bit of a muck-up, but he was able to get what he needed, and it really did the trick. He seems to have a lot more energy since getting the blood and platelets. On Tuesday we ran a few errands, and yesterday we went out to dinner at Hueys' in Lansdale where it was "turkey nite". We met up w/ some old pals,( Bev and Joe Z, Anita R and Anita S, Holly S and LeeW),caught up on everyones latest goings-on, shared some laughs and their precious friendship. Oh yeah, Bob and I each had a cosmo, and the turkey special....real turkey w/ stuffing, mashed potatoes, and fresh asparagus. Um, hmmm, good. Oh and Bob had a HUGE slice of chocolate cake w/ vanilla ice cream. It was wonderful to be out...felt like"old times", and I want to thank Mr.Z for generously treating everyone. Muchos gracias. After dinner we stopped by the Aranos who host our games group, and it was great to see our poker-playing buddies, Yvonne,Lee, Carolyn and Jim, Walter, Shirley and Magda. I sat in for a few hands, lost all the pennies that Carolyn spotted me, and won the last hand I played w/ Walters' money, so he came out ahead about 50 cents(we're big-time gamblers). Bob deferred from Texas hold-em, and tormented Lee by cheering for the Red Sox over the Yankees. It was a wonderful night, and did my heart good to see Bob out and enjoying our fabulous friends.

As Bob also told you, he is plagued with this strain in his neck(of course he gets much more anatomical about the whole thing, dissecting the pain into 3 separate sections, throwing in words like...trapezius, neuritis, radiculopathy etc. etc.). All I know is that it was worse at night and suffice it to say that we were not sleeping well. There is a limited number of meds he can take b/c of the low counts and GI bleeding, and GI side effects,i.e. constipation. So, as Kris M. said "paging Dr. Jamesons", and a little nip the past 2 nights seems to have done the trick. I also think that the increased activity helped, as Bob spent less time in the recliner the past few days, which I swear is contributing to the neck strain.

OK, comments from the peanut gallery,or should that be to the peanut gallery. Happy Birthday wishes to my big brother Tom. Hopefully we will get to celebrate w/ you over the weekend....Kris M.....thanks for the link...I spent Tuesday am at the Chelsea flower show and felt quite British. Also as of Monday, Tigers was still Tigers in Kulpsville. I'm sure, b/c that's where Bob and I had breakfast. Sorry your shoulder's acting up. Have you tried Dr. J.(hmmm, double entendre?).....Rhonda H....looks like you're gonna have to give up your recipe for your special choc. cake. Actually a ready-made cake is always welcome at Calverton Ct. says my husband. He especially likes it nuked w/ vanilla ice cream, as he had last night....Ann M, thanks for the gap link if that was you. Had already gone on, and ordered Bob jeans and khakis. Also found dockers at Kohls that have an adjustable waist(I'm gonna need them for myself soon, if I keep joining Bob in his binges) that look good on him.....Debbie darling, so good to hear from you, and such a long post. Your fingers must have been tired after that. Hope you're doing well. I've called a bunch of times, but stopped cuz I thought you might have been sleeping. Now I know you were out to eat, or at your new peaceful spot. Good for you. Give us a call if you feel like it. Miss talking to you....MDF, Deb says she thinks your house sounds like a riot....I think she means that as in funny....I think it sounds like riot, as in you need the National Guard....homemade fire extinguishers and hot air ballons??? Scary!!!!....and finally, Jessie, hope Mr. C.'s all better, and hasn't passed anything on to Miss Emma or you and Walid.

Hope you all are doing fine. We appreciate the continued blogs, cards, and calls. And as per usual, please keep the prayers and good thoughts going.

All our love,
Bob and Mo

P.S. Who the heck is the anonymous who wrote about the PMS diner anyhow? Thought I had it figured out, but I was wrong and am stumped. Unless it's YA....????

Tuesday, May 23, 2006

trip to cmmc

after althe hard work on friday, mondaynat cmmc didi not go well. the fax for the blood and platlets did not go thru and they had to refax mon morning. this meant that although we got there at 0800 hrs, there were no blood products; the arrived at 1320hrs. so mo and i went out to breakfast[which i always like to do] and went home till they called us. we finally left the hospitalat 1700 hrs, and i missed ny deck time.
today was a beautiful day nand i got some deck time .we are hoping for a quiet week. ifeel good so far the neck zinger has not been bad today. love bob

Sunday, May 21, 2006

Hi from Mo

Hi everybody,

Thought I'd come out of my blogging exile to say hello. Bob is watching Mel Brooks' History of the World, which does nothing for me, and furthermore I'm forced to tape Inspector Jericho on Mystery tonight. BTW does anybody out there watch this? I missed the conclusion of the first episode that was on 2 weeks ago...it was about a man who was kidnapped. If you caught the ending,could you let me in on whodunit?

As Bob said he had a restful day. Can't remember if he told you or not, but he's going to CMMC tomorrow for blood and platelets, as his last hgb was down a little at 8.2. The platelets held up pretty well though...they were still 29,000 3 days after an infusion, so Dr. Luger felt that he could wait until tomorrow and get everything at once. I expect he'll be there for quite a while, as they don't run these things in anywhere near as quickly as they do at HUP. His white count was 2.8 last Thursday, and the neutrophils were over 500, so that's why she gave the go-ahead for eating out. Maybe sometime this week, since he's getting tanked up tomorrow.

Meg and I made a Costco run today, and once again I have to sing her praises. We ended up w/ a trunk and back seat full of goods. Also made stops at Best Buy and Walgreens, as Costco never seems to have everything I need. Anyway, I'd still be unloading the car and putting stuff away if it wasn't for Meg trekking it to the basement and 2nd floor. So thank you, Megan. In addition to the scale we also needed a digital thermometer to keep a check on Bobs' temps. He hasn't had any fevers at all since we've been home, thank you Lord. Now, we have a glass thermometer, but all the visiting nurses look at it like it's a prop from the Flintstones....a glass thermometer??? Don't you have a digital? You really should have a digital. Soooooo, now we have a digital. Unfortunately the scale is also digital, so I fear there's gonna be some brain-work involved to set the thing up. At any rate, we are now well stocked in TP, clorox handiwipes, windex, toothpaste etc. etc., and I shouldn't have to go to Costco for many mos.

Just a few comments to some buds.....Jax and Con, it was so good to hear from you. Were your ears burning, cuz I just said to Bob the other day that we hadn't heard from you guys in a while.......MDF, ooh, big burn (as Kate would say) from Eileen....Who is this Bonds? That really hurt didn't it? I was lol when I read that.....and speaking of burn, Kim, what, did you get a nap the other day so you could stay up til after 10p to watch CSI and write on the blog???.......Happy Anniversary to Holly and Tom S. Hope you guys had a nice weekend. Did you go to AC? I'm going to stop in at MSC tomorrow when Bob's getting his blood and platelets. I really miss you guys.....Cozz, that wedding story was too funny. But how about the one that's a little closer to home?...your son-in-law to be coming down w/ appendicitis a few days before the wedding....and you, his future father-in-law taking it out? Bob reminded me about that. Talk about "nice try".
......And I just want to say Hi to sweet Brenda H. Your blogs are so darn cute and sweet. Your loving personality comes thru in every word. As Jessie says about Bob and I, I can hear your voice when I read them....and lastly, I too want to say hi to all the Khouris and Teklitses. Hope you had a wonderful weekend and that everything came off smoothly today. And we definitely need pictures of Emma and Christian with their Mom-Mom.(that's Deb T.) And speaking of Deb, I just want to ask for some stepped up prayers for her, as she goes back into HUP tomorrow for her 3rd round of consolidation chemo. Keep your spirits and your pecker up Deb.

Well! That was a lot of words, but Bob didn't use many today, so I'm claiming what was left of his quota.As always, thank you to EVERYBODY for all the kindnesses you continue to show to Bob and I. We are truly so appreciative. And please continue to remember us in your prayers.

Love, Mo

another day in paradise

if the weather cooperates will get some deck time. mo has to buy a scale, since dr. l. wants me to keep track of my weight. they don't want me to loose any more weight.[mo made me pancakes this morning.] my only problem is this neck zinger; it has set up a pressure point over the left trapezius muscle that i can't relieve with either ice or heat. today iwill try a new medicine--jamesons 12 yr old. have a great day-love bob.

Saturday, May 20, 2006

another day in paradise[home]

it is so good to be at home. today the weather cooperated and i got to have some deck time and listen to the birds singing. a little thing i missed in the hospital.
some thank-yous are in order: to my office, i miss everyone there.
to jessie an walid: thank you for all the positve messages and vibes during the past 2 months. congradulations on emma' christening.
to charlie and dawn: the soup was delicious; your visits meant and still mean a great deal to me. who would of thought that 34 years ago when i flew in from ca. on the air force courrier that we would be where we are now. iam a lucky man for many reasons.
to ann m.:thank you for the hat; iwear it everywhere. since i went to georgetown and temple this drives people crazy.
to linda v.: congradulation on your finish in th nw- dog show.
to jax and connie: i have been waiting for that special back rub; i don,t need the other--my bowels are working fine.
love you all, bob

Friday, May 19, 2006

hup visit

the visit was quite benign. i fit into my own niche. since i am not sick and feel good they are not forced to do anything. ergo they willsupportme with blood and platlet transfusions as needed ; and do a bone marrow in 10 days and then decide into which protocol to put me. the good news is that either protocol does not require hospitilization. i am allowed out so mo and are going to some local retaurants. now if can only can get mo to go to a sushi bar. that's not good ican't have raw food.
tony c.: give my bst to your mom.
talk to you all tomorrow. bob

Thursday, May 18, 2006

bob's post

thank you everyone for your comments. mo and i are chilling out today; mo spends her time trying to dress me; i lost so much weight that suspenders do not hold my pants up. i do believe that i have gained weight at home thanks to mo and my natural craving for junk food. speaking of food: george[the dragon-slayer], it is nice fo you to offer a good hungarian meal. i woucld prefer the chicken paprikash with real hungarian paprika[not the american variety]. i will get back to you on this.
wanda and joe: is joe behaving or is he in touble again.
linda v.:good luck with the outfit.
linda s.: have your daughter fix your computer, and give steve n. my best; tell him to keep his [fishing] lines tight. heshould be going north soon.
mdf:i agree why would someone try and hit bonds that was plain stupid; his comments last night show that hje is feeling the pressure.
istari #6: the phillies didnot look good in milwakee; hammel pitched today and again he threw too many balls and not enough strikes.
tomorrow,igo to u of p and see what further fun and games are planned. i let you know tomorrow. bob

A P.S. from Mo....Please send your prayers and good vibes HUPward tomorrow morning. We'll be meeting with Dr. Luger at 11am, and than if Bob needs any blood or platelets he'll get them there afterwards. Thank you for continuing to support us with your blogs cards and calls. We really appreciate it.

Wednesday, May 17, 2006

bob's post

i appreciated the comments from the booths and gerharts and linda v. seeing your names makes me feel that you are quite close. istari 6 veal chops have always been a favorite. kim h.: jerry and i have a special bond since our last visit? mdf: i think bonds is turning into a head case! i love reading the comments, keep them coming. mo is teaching me how to use this contraption. love, bob

Tuesday, May 16, 2006

Special Guest Posting-----Here's Bobby!!!!!!!

Well Mary Day, you wanted an update....how about a special guest posting from the big guy himself? We are shamelessly stealing the title from Deb and Joe....thanks guys. Okay, here's Bob...

Hello all you fans out there. A round of applause for Mo. I deeply appreciate everyone who wrote on the blog; when my spirits were low your comments were very uplifting. Also I want to thank everyone who kept me in their prayers, and sent cards and gifts. Remember this was only the first inning..(Mo says Oh My God, there's 8 more to go????). Please keep up your support. It really means so much to Mo and I.

I'm really relishing being at home and had a good day today. I went to CMMC(local hospital) for platelets, as my count was 14,000. We were pretty happy w/ that...thought it would be lower, as I haven't had platelets since last Thursday. My hgb was 9.1, so that's really holding steady, as I haven't had a transfusion of red cells in almost 2 weeks. And my white count is 2.8. That's lower than when I left the hospital, but we don't have a neutrophil count yet(What is it w/ the damn neutrophils, Mo wants to know), and hope to hear about that tomorrow, since that really governs how cautious I need to be. But it was good to be out and to be seen...ran into Dr. JK, but missed my fishing buddy Pharmacist Phil. I gave Mo heck for not waking me up when you stopped in Phil.(Yeah, I'm still reeling from that scorching Bob gave me). We stopped at our new Tri-valley office on the way home, and I got the grand tour. The place looks great, but even better looking were all my Tri-Valley compadres. It was wonderful to see you folks even just for a little while. Than after quick stops at the bank and post office, I insisted on lunch from the Sandwich Mill in Kulpsville, where I feasted on a large cheesesteak made by the owner herself our good friend Kathi M. (Mo says the lunch hour was over and there wasn't a crowd and I couldn't keep him from going in even if I had a pack of wild dogs to sic on him). When we got home, I rested up, watching poker on TV(Mo fell asleep on the sofa). Now Mo's making me work on the blog...she's a real slave-driver, nagging me all the time...never lets up at all. Hee-hee-hee. After we're done here I'm going to take a nap in bed, as the recliner gets uncomfortable after so long.

So, we're hangin' in here...doin our best each day. We go to see my MD at Penn on Friday to discuss where we'll go from here, and we'll update you after that. In the meantime...KEEP THOSE BLOGS COMING!!!!(he made me write that). I'm reading them myself now, though Mo still prints them out. The stack's about as thick as a Bible right now...unbelievable.
Well, thanks again for everything. Gonna go nap.

All our love,
Bob and Mo

Sunday, May 14, 2006

Happy Mothers' Day

Good Morning,

This is really just a P.S. of sorts, as I forgot to wish all the Moms, Grandmas, Stepmoms and Godmothers out there a Very Happy Mothers' Day. Hope you are all relaxing and taking a well-deserved day off.

All our love, Bob and Mo

Saturday, May 13, 2006

Just chillin'

Hi everyone,

A quick post to let you know that all's well. Bob says hi, and that he's slowly getting his strength back. We had pizza for dinner(from Famous at Bobs' request) last night and watched the Phils. I made eggs and bacon for breakfast and Bob was literally swooning over his plate....all the little things that he didn't even know he missed. Thursday night Bob downloaded some patches for his game into the computer, and has spent an hour or 2 each day playing(that, he knew he missed).
The Penn visiting nurse was here the past 2 days to do Bobs' admission and give him his IV antibiotics. Those are finished now, as only 2 more doses were needed by the time he was finally d/c'd. She'll be back every Monday and Thursday to draw labs, check vitals, IV dressing etc. We anticipate that Bob will need platelets and probably blood transfusions on Tuesday.
Bob remains in his neutropenic "cocoon", though admittedly a roomier one than at HUP. He still must follow a neutropenic diet, which means no raw fruit or veggies, and no black pepper(apparently a huge source of germs). And of course he is not leaving the house, although he really is not strong enough for that yet anyay. And I am Clorox handiwiping every surface in sight, every chance I get.
He is watching the Phils now, and than we're going to watch an old Sherlock Holmes w/ Basil "Ratbones".

We also wanted to shout out a big hello to RLN down in Ga. Richard, I just found your blog yesterday as it wasn't on the current days' post. It was great to hear from you, as Bob says from one April fool to another. We're so sorry to hear what your grandson has been through and are keeping him in our prayers. Please give Maryanne our regards too.

So everything's status quo, which is how I like it. Please continue to keep Bob and I in your prayers.

All our love,
Bob and Mo

Thursday, May 11, 2006


Good Evening dear friends and family,

We are home, home, home!!!! I arrived at HUP at 11am. Bob had already had a platelet infusion even though he had them yesterday also. This is a precaution to keep his count up over the weekend. His hgb is 9.1 and has been 9 or over for a week now, so he didn't get any blood. His white count is still rather low at 3.3, and there wasn't a neutrophil count back by the time we left. So for the weekend he will lay low, and continue the neutropenic precautions. He was given one last IV antibiotic infusion and had his IV catheter dressing changed. We were given numerous instructions and prescriptions, than Bob washed up, changed into street clothes(that are all very baggy), and we were outta there. Everything went very smoothly w/o a single glitch.

We were on the road by 3p and got home around 4p. I unpacked while Bob savored a few moments out on our deck, enjoying the birds, green trees and flowers. Dynamo Debbie stopped over to drop off dinner....gemelli with tomato sauce and sausage(as requested by Bob when she asked what he would like for his homecoming meal during her visit yesterday), salad and Italian bread. We ate like we hadn't had a meal in years, and sopped up every bit of sauce with our bread. It was fabulous. Megan also stopped over after work and shared our feast. I had to run out to CVS to pick up some prescriptions, and when I got back Meg had done all the clean-up. I just want to take the opportunity now to thank Megan for being here for me. It was wonderful to know that she would be here when I got home...hated coming home to an empty house when Bob was at CMMC for a week or 2 at a time. Can't imagine these last 6 weeks without her. And it wasn't easy for her either. She goes to school in Bucks co. and works at Grandviews' day care, so she really ran all over creation every day(not to mention working out at the gym). She'd bring dinner home and help with the laundry and housework, and on weekends come down to visit Uncle Bob. She's a gem, my Meggie, and I will be forever grateful.

Well there's going to be a delay in this post b/c Penn home care just stopped by to drop off supplies, go over policies and get a gazillion forms filled out. But that's okay cuz.....BOB'S HOME!!!!! So I'm going to go spend some time with my guy before he poops out. He's watching his first television in over 6 weeks, relaxing in the recliner with a glass of iced tea. I'm simply overjoyed, I just can't tell you. I'll continue to post, but probably not every day. Going to take some time to just be and enjoy Bobs' company.

Once again, thank you, thank you, thank you to all. We are asking Gods' Blessings to be bestowed on each and every one of you tonight, and thanking him for your presence in our lives.

All our love,
Bob and Mo

Wednesday, May 10, 2006

Day 43 ---------- D-Day + 1

Dearest friends and family,

A short post to let you know we remain on track for d/c tomorrow afternoon. Bob has remained afebrile, w/ a white count today of 3.3. Un-fortunately an ANC was not done...don't know why this isn't done daily as a matter of protocol, since everyone considers it so important. Anyhoo, Bob feels good, just weak. I took a page from JTs' book and turned into the lap nazi today....only got 2 out of him though. And damned if he didn't have salisbury steak for dinner again...the guy's a glutton for punishment. Deb and Joe stopped in after Debs' appt. at Penn and took home some linens and dvds. So the room is essentially cleaned out, as I took home anything Bob won't need tonight. They are going to keep Bob on one of his IV ABX for 4 more days, so he'll need to get that at 11am. We also need to go over the d/c instructions and hopefully will be on our way after that. Bob received platelets today and his hgb remains over 9.0, so I'm not sure if he'll need any blood products tomorrow or not.

Please keep praying that we remain on schedule. As I said yesterday, now that it's near we are both very anxious for him to come home, or "get the hell outta Dodge" as Deb is fond of saying. I'll write tomorrow to give you all, what I pray will be the good news. Thank you from the bottom of our hearts, to EVERYONE for EVERYTHING. We love you all...couldn't have made it w/o you.

All our love,
Bob and Mo

Tuesday, May 09, 2006

Day 42 Admission

Dear friends and family,

Today was an "up" day on the roller coaster ride of HUP. Bobs' hgb is 9.0, his platelets are 26,000, his white count is 3.9 and drumroll please......ANC is 746!!!! The CXR done yesterday is normal, and Bob only has slight chest discomfort if he takes a very, very deep breath. But the best news is that his antibiotics were finally switched to pill form. They were started this evening after a fax came with the sensitivity(I'm guessing it came from Timbuktu). The sensitivity drew a blank as far as actinomycoses(bug that was cultured from the gum wound), so the ID dr. simply put Bob on the oral equivalent of his IV antibiotic....something we both thought would be done from the start. So why the delay?? Your guess is as good as mine. But enough grousing. Bob was told he could come home tomorrow evening and he said no, he wanted to wait until Thursday am. That way his counts will be back and he can get "tanked up" with blood and platelets before he leaves. That also gives us some breathing room for the weekend as far as his counts go. I expect the visiting nurse from HUP will come on Monday and draw labs, but we'll go over all that tomorrow.

Bob had a good day...uneventful(which always makes for a good day). He had some unexpected company, which was nice since I had my "day off". I'll take the train down early tomorrow and will spend the day w/ Bob.
I had dinner tonight with Deb and Joe, and Debbie looks great. She will see her hem/onc MD tomorrow at Penn to schedule her next round of consolidation chemo. Thank you guys for a lovely evening. Yvonne and Lee, Bob was finishing up the last Sherlock Holmes story tonight....there were 3 or 4 stories on that dvd and he really enjoyed them. Tonight he requested that I bring "The Outlaw Josey Wales" for his viewing pleasure tomorrow night, so I picked that up at Blockbuster. Once again I have to thank Matt for the DVD player(and D&J for the use of yours before Matts' arrived) he sent his Dad...Bob has watched something every night for several weeks now, and says it helps so much to make the evening go by quicker. The nights I imagine are the hardest time to be in the hospital...those quiet hours when the activity dies down, but before sleep takes hold. Those are the hours Bob filled with CDs, books, and DVDs. So thanks to everyone who sent anything for Bobs' listening, reading or viewing pleasure. BKH, I forgot to tell you Bob said the cd was very soothing and liked to play it right before he fell asleep. Bill, I imagine Bob told you he has already started the first of the series you sent.

EVERYONE has been so wonderful. Tonight the request for continued prayers and positive thoughts comes from Bob. I just spoke with him and he wanted to thank everyone and asked that you pray for discharge on Thursday as scheduled. Bob is officially anxious to come home, and I am longing for the same. Thank you again for your unwavering support.

All our love,
Bob and Mo

Monday, May 08, 2006

Day 41 Admission

Hi everyone,

Where to begin? This has been a day of frustrations for us. Bob called this am and told me he had some right-sided chest discomfort during the night--worse with deep breathing. He informed the hem/onc attending(our own Dr. Luger is not on call this week) and entourage, who said it sounded like nothing and they would "watch it". They also apparently were leaving the problem of the culture and antibiotics in the hands of the ID drs. Bobs' WBCs today were 3.6, his hgb was stable at 9.2 and his platelets were low, so he got an infusion of them. His ANC was still not back as of 8:45p, so I'm guessing it wasn't even done.

When I arrived I questioned Bobs' nurse as to why there seemed to be such a delay w/ the switch in ABx and was told the ID dr. usually "rounds" late in the afternoon. I than asked why there wasn't at least a chest x-ray ordered when there seemed to be a pleuritic component to Bobs' pain, which he still had.(Us poor nurses...we always get the wrath of the families after the docs leave). So Rachel got a CXR order from God knows who, and Bob was taken down to the department for that at 5pm. Dr.Shuster(ID) arrived on the floor at 6p, but as of 8:45p when I spoke to Bob she still had not been in to see him. And to top it all off, when I was leaving I told Bob he looked flushed and he now has a temp of 100.2. So, I think it's safe to say that Bob will not be discharged tomorrow, and maybe not even Wednesday at this point. We are disgusted, and not even so much that the discharge is being delayed, but b/c there seemed to be such a blase attitude about everything today. On Friday, there was such a sense of urgency, and than...nothing. Just more of the roller coaster ride that you never can adjust to. Bob kept his cool for the most part, but I could tell that it was difficult for him to do so. He had that "bottled up" sort of look that he gets when he's trying not to explode. He told me on the phone that he's going to give them "tsurus"(spelled phonetically) tomorrow. He said that's Yiddish for a pain in the a$$.He was calmer by the time we hung up, and was going to try and sleep. I think the temp was making him punk. We did have a nice dinner together at least...finished up the lasagna, Santa. And no it was not salty at all, it was delicious, very cheesy.

Now on a lighter note, Bob enjoyed the blogs today...got quite a few chuckles, and had a few comments.

To Rich F.....Bob says his cr. is 1.1 and he has been on norvasc for his bp. Today he was 140s/70s. He also said you would know tsurus. I said are you sure you don't mean he is a ....no, no, just kiddin. How do you like that? Blog to Bob and you get insulted.

To Hatfield girl and Jim...the mustache is definitely thinner, but it's still there and I can't see any mole. I think he made that up. In that same vein, I'll tell you it's been almost 2 weeks since Bob had to shave, and every time I straighten his sheets there are hairs on the pillows. So the fringe is definitely sparser also.

To Linda...that's Dr. MOzzola, and if Bob doen't listen to me I know where I can get a great nurse in Flourtown to come and back me up.

To Bonstance, we are quite impressed w/ your card creating capabilities(alliteration unintended). You should go into the business, and Kate loved your Disney stamps...we Noon girls notice all those little details.

To Kris...thank you for all the research, and Bob had some interesting trivia of his own to add. Debbie, maybe you remember this cuz I know you were a big St. Elsewhere fan. Okay, the very last broadcast episode of St. Elsewhere ended with a scene in the ER. Howie Mandels' character heard singing, and pulled back one of the curtains to find a woman dressed as Brunhilde belting out her aria. So everybody knew the show was over cuz the fat lady etc. etc. Bob also told me that in Gotterdammerung, Brunhilde is singing from Hell, b/c her father Odin banished her there back in the second ring, so she's one of the first characters to die. Don't you just love opera? You can still sing your heart out when you're dead or dying of TB. Alright, well that's the second time I've mentioned Wagner on this blog and it's 2 times too many for me.

Well, I feel a little better after getting some of this stuff off my chest. You all have been wonderful. Thank you for the cards, blogs, visits, gifts and calls. I can't find the words to tell you just how much your love and support mean to us both. I can see how touched Bob is every day when he opens a new card or reads the blogs, and that lifts me up. So please hang in there with us. We are still hoping for d/c sometime this week, but not counting on a specific day until it actually happens.

All our love,

Bob and Mo

Sunday, May 07, 2006

Day 40 Admission

Dear friends and family,

Sorry, but I'm having trouble getting the large text tonight.

Well, I thought Bob would be coming home after his Biblical 40 days and nights at HUP, but alas, it looks like discharge will be Tuesday. There has been a problem trying to find the sensitivity report on the culture of Bobs' mouth wound, taken over 5 weeks ago. This must be tracked down so the Drs. know what oral antibiotic to put Bob on, and Dr. Luger wants him to be on the oral versions for 24 hours before discharge. So, we are alright with that, b/c we want everything to be ironed out, as best it can be before he comes home. This also gives Patty(d/c coordinator) more time to get everything set up w/ Dr. Zipins' office, regarding Bobs' blood transfusions.

Bob had a great weekend....no temps and a WBC today of 4.2. He walked both Sat. and Sun., 2-3 laps at a time and went a few more rounds today than yesterday. Yesterday his knee locked up on him, probably b/c it'd been so long since he actually was working those muscles, but today went better.

He also had lots of company, and really enjoyed all his visitors. Yesterday, in addition to Tom and Anna, Bill and Emilie T. from TVP visited, as well as Santa and Sam. Thank you everyone for the gifts also. Bob had a huge helping of lasagna for lunch today. Santa brought that down last night, just about 24 hours after Bob mentioned he had a hankering for it. He really enjoyed it, needless to say. And I really enjoyed watching him eat that as opposed to that tan/gray Salisbury steak.

Today, Kate and I arrived by 11am, bearing Distelfink(local bakery) pastry. We had almond danish for Bob, and in true "Mazzola on-call for the weekend" fashion...2 dozen sticky buns for the nurses. It's also the start of nurses week, so we couldn't forget all the wonderful nursing staff of Rhoads 7. They are a skilled, caring and dedicated group of men and women, and very, very special. Of course I had to tell them the tale of Bobs' bringing in sticky buns whenever he was on call, which elicited many oohs and aahs. I know... I'm bragging again...just can't help myself. Anyway today seemed to be cousins' visiting day as Bobs' cousins Rick and Joan, and my cousins John and Connie, were all in to see Bob. We thank you all for coming down. We also took the DVD of Chicken Little and Bob was loading that up when I spoke to him a litle bit ago. A little more lighthearted than his usual fare, but Bob loves a good cartoon.

I think that's everything for now. Oh, May Day, Bob said he didn't want to watch TV when he was in the hospital, b/c you end up watching the clock, waiting for some program or other to come on, and it makes the day seem long. I don't know...I think the fact that there's no ESPN or Food Network on HUPs cable may have had a little bit to do w/ that. Also, what do you have against people flying through bamboo trees?

I know I'm forgetting something, but I've gone on way too long already. Thank you all for everything, including the huge number of blogs. Bob had 2 days worth, and he read and reread them today.Please keep the prayers(fervent and otherwise) and good vibes coming. Hopefully we will float home on them this Tuesday.

All our love,
Bob and Mo

Saturday, May 06, 2006

Day 39 Admission...Countdown to home

Hi everybody,

Well, believe it or not, it looks like Bob may come home on Monday. It may be late Monday, with all the planning that has to be done, but that's okay. I stayed home today to clean...trust me when I say the dust would've choked Bob coming in the door, if I hadn't. Kate helped with vacuuming and laundry, and Megan went to the grocery store and Post Office. Don't know what I'd do w/o "my girls". Tom and Anna went to visit Bob, and came back laden with pictures, Cds, DVDs, and books. It's amazing how "stuff" accumulates. There's still a good bit to go, and I hope to put a big dent in that tomorrow. So we are ready.

Now for something completely different...good news. Bobs' neutrophil count is up to 346!!!! And he hasn't had a fever all day!!! I'm hoping that he'll remain afebrile at home, but we'll just take it one day at a time. His antibiotics have been switched to oral, from IV. And there's a tentative plan to actually schedule Bob to get platelets every M-W-F, and blood as needed. They are going to coordinate everything with our local hematologist, so that Bob is able to receive his transfusions up here, rather than have to go back and forth to HUP. So, there you have it. I'm so excited at the thought of having Bob back home. I know I shouldn't get my hopes up too high, b/c we never know what could happen w/ fevers etc. in the next 2 days. So fervent prayers requested again for the nasty fevers to stay away.

I'll keep you posted, and as always...thank you, thank you, thank you. We are so blessed to have such wonderful people in our lives. God bless all of you for your generosity and concern these last 6 weeks.

All our love,
Bob and Mo

Friday, May 05, 2006

Day 38 Admission

Dearest friends and family,

I didn't really intend to write again tonight, but after reading the blogs, I just have to thank you all. They've really touched me, and I know Bob will feel the same way when he reads them.

I should also let you know that Bob actually had 46 neutrophils today. So that is a start. Normally they like them to be 500 or > before you can be sent home, but we actually talked to Patty the discharge coordinator today about coming home at the beginning of next week. She said that it's possible to come home with a lower ANC, but Bob might have to stay on IV antibiotics. I'm sure he will also continue to need blood and platelets, so theses things have to be coordinated with a home care agency. Bob did need platelets today, and once again was just zapped by the benadryl. He didn't have any fevers while I was there, but this evening his temp went up to 100.4. Still not as bad as 102.8...which happened early Thursday morning at 6am. I don't think I ever told you, but Dr. Luger thinks Bobs' temps are from the leukemia itself, and Bob may have to go home with fevers, but they complicate things. Normally when a pt. goes home after chemo, they're told to come back if their temp hits 100.5, so they can be cultured and started on antibiotics. Well, Bob has been cultured out the wazoo(literally), and they have all been negative, plus he is already on antibiotics, so this is something we are going to have to play by ear. But what we are really hoping is that his temps just stay down, so I can have him back home.

Bob is watching Crouching Tiger, Hidden Dragon tonight.(Btw, Matt he loves the DVD player, and I loved your blog tonight...thank you. And Deb and Joe, I have your DVD player at home...thank you so much for sharing.) So he's feeling pretty good. He's going to try and get some laps in tomorrow if he's feeling okay. He really hasn't been walking for 2 weeks now, and I'm afraid he's going to feel that, once he gets home. But he's been a model pt, and I know he'll do what he can.

Now, just a few comments on your blogs...........Kris, I'm not entirely convinced that you hadn't started the Cinco de Mayo celebration a little early, and blogged that schizophrenic post yourself.I think I hear Margaritaville playing in the background.........Wanda, I feel that I should know the hot pickle/ICU story since I worked there 22 years, but I can't think of what it is. Do you want to share?........Kim, I'm so excited b/c I know about the fat lady singing.(At least I think I do). During the golden age of Vaudeville there were always many acts, but the last one was always a fat woman singing. Hence, it ain't over etc. Kris, is that right?........and finally Mandi, thanks for sharing that sweet tale. I loved it.

Once again, thank you so much. As Matt said, have Faith and Hope. We are doing our best, with the help of your love and support.

All our love,

Bob and Mo

P.S. Now I need help from a computer geek....When I used to hit enter, the cursor would move to the line immediately beneath, but now it won't cooperate...witness my sign-off above. How can I correct that????

Day 38 Admission

Dearest friends and family,

I realize rereading last nights' post that I must have devestated you with the news. Please take heart and know that we remain hopeful. Bob had a good nights' rest w/o fevers and his white count is 2.2. We will find out later about the ANC(neutrophil count). Dr. Luger was in this morning and said Bob will stay in over the weekend while they watch his temps and WBCs, and with any luck they will cooperate and he will be able to come home sometime next week. Meanwhile, please blog with encouraging words. Bob REALLY enjoys hearing from you guys...don't feel that you can't remain lighthearted. We all know that laughter is the best medicine...Readers' Digest says so.

To Bill C. who called yesterday about the blood. We are not requesting that anyone give donor directed blood for Bob...it seems too involved...just that you donate if you're able. Also, we never realized that you were the Bill C. who blogged a week or so ago...thought you were one of Bobs' pts. Now we know who RLN is, but still are stumped by SS. Can you fill us in?

To Kris, Bob says thanks for all the FYI's you are checking into. We thought Salisbury steak originated in England...who knew? (He had it for lunch again yesterday, by the way)

To darling Kathi, thank you for your heartfelt blogs this morning. Maybe I'll get in to see you soon.

To my best buddies, thank you for being there for me last night. Love you guys.

To all our buddies, please keep praying and writing and calling. We are thanking God for all of you and remembering you in our prayers too.

All our love,
Bob and Mo

Thursday, May 04, 2006

Day 37 Admission-----BMB Results

Dear friends and family,

I'm sorry for the lateness of this post...I've just arrived home after spending the day w/ Bob. We met w/ Dr. Luger this morning, and I wish with all my heart that I had good news to share, but the results are not encouraging. The leukemia remains unchanged after this round of high dose chemo. Bobs' marrow is almost completely cellular, meaning that all they can see is leukemic cells or blasts. Needless to say this is very discouraging, and means that this is a very aggressive form of leukemia and unresponsive to the traditional treatment. We discussed different options...another combo of chemo agents, but that have less proven effectiveness than what he's already received...there may be a clinical trial that Bob might be a candidate for, but these different options are all going to depend on what his white count does now. Even though it is rising...today it was 2.4...there are no normal white cells, neutrophils being the most important to fight infection. Dr.Luger said that the chemo most likely destroyed any "good" white cells, but did not touch the leukemia. So at this point, we are waiting to see over the next few days exactly what happens w/ the WBC's. It may continue to go very high, and the leukemia actually starts to crowd out the red cells and platelets, so there is a risk of bleeding. Obviously there is still a great risk of infection also, if the white cells are abnormal.

Bob continues to be a brick...whether he is holding it together for me, or himself, or probably both...he is my rock. He says one day at a time, and reminded me of the dire situation our dearest friend Deb found herself in. She was given terrible news, was all set to go through w/ a very dangerous, nearly experimental, stem cell transplant and 2 days before the procedure was found to be in remission. Miracles can happen...we pray for one now. In the meantime, we endeavor to live every moment the best we can. Bob received a card from our good friend Anita Russo which he has pinned on his bulletin board. It says..."Yesterday is history. Tomorrow is a mystery. Today is a gift"...Eleanor Roosevelt

With so much love and thanks for your steadfast support,
Bob and Mo

Wednesday, May 03, 2006

Day 36 Admission----Day 16 HiDAC

Dear friends and family,

Bob finally had a fever-free day, which may be due to the fact that his white count was all the way up to 1.0!!! He needed 2 units of blood though, as well as platelets, so he once again was in a benadryl-induced slumber. Dr. Luger was in this afternoon, and told Bob the results of the bone marrow should be back by tomorrow, so we are scheduled to speak with her at 10:30am.
Other than that, there's really nothing new to report. I left the info on the blood donation at HUP, but it's actually somewhat involved to designate your donated blood specifically for Bob. And at this point there doesn't seem to be much reason to do that...he's had so many transfusions that he could've gotten Hannibal Lecters' by now, and who would know? Although if he asks for liver and fava beans with a nice chianti, I guess that would be a clue. Seriously though, if you know of any blood drives in your area, please give. I shudder to think where we would be w/o all the generous people whose blood and platelets Bob has received.

And as per my usual request, please keep us in your prayers tonight, and direct all your good thoughts and vibes to HUP tomorrow. We are so grateful for everyones' generosity of spirit as we try to make the best of this "adventure".

All our love,
Bob and Mo

Tuesday, May 02, 2006

Day 35 Admission------Day 15 HiDAC

Hi everybody,

Well, despite the continued temps of 102, Bob is still hanging tough. Dr. Shuster, the ID doc. still feels that Bob "just needs a white count." He seems pretty bushed today though, and has been napping off and on since we arrived at noon. Meg came w/ me today on the train. She had a day off for a dr.s' appointment, so I went to that w/ her and than we came down here. Bob had 3 separate visits this morning before we even arrived, so he's had a full day. I want to thank Mr.P. for the info on blood donations(I'll blog about that later when I have more time at home. I'm on the family room PC and don't want to take up too much time here). Bobs' counts are holding their own and his WBC is 0.5 which is actually a tad higher than the last few days, so maybe we're on the upswing. That being said, we need to take into consideration that before the myelodysplasia changed to leukemia, Bob needed neupogen shots to stimulate the white cells to get his count to a normal level. So we're not sure exactly how high his count will go, or even if he will still have the MDS. All points that we hope will be addressed in the next day or two, when we get the BMB results.

I tried to talk Bob into walking today, but he seems too tired. Maybe later if his temp stays down. He's just finished his supper of chopped steak...not sure what the distinction is between that and Salisbury steak???...and is going to try to stay awake to work on the crossword and sudoku. He's also planning to watch more of Return of the King this evening on DVD, and his streak of TV-less days is now 35.

Bob sends his love and thanks to everyone, especially all his visitors today, as well as the card and gift senders and the dedicated bloggers. I just can't tell you how much he looks forward to reading those each day. My thanks for remembering us in your thoughts and prayers...we are forever grateful.

All our love,
Bob and Mo

Monday, May 01, 2006

Day 34 Admission-------Day 14 HiDAC

Dear friends and family,

It can not be May already...can it? Unfortunately it is not starting out so merry for Bob. I took the train down today, arriving at 11am. A new hem/onc fellow was attempting to do Bobs' bone marrow bx(BMB). I say attempting, b/c she was on her 3rd try, and I think would've continued, but Bob asked her if she was thinking of asking someone else to do it.In all fairness to this dr., I have to tell you that she stood about 5'2" and probably weighed 100 lbs. I think she actually couldn't get the leverage and oomph that this procedure requires. After that she searched out our pal, Dr.Ara, who agreed to do it at 1:15p. At 3:15 while Bob and I were both dozing off Ara arrived. I had to leave to catch my train home, but called Bob as soon as I got in, and he said Ara did the BMB in a flash....you either got it or you don't, and Ara has got it. So, we will find out whether or not the HiDAC did its' thing in a few days. Although this sounds gruesome, Bob claims the site was anesthetized really well, and he has no pain. He does however have a very large hematoma at the first doc.s' site, despite almost 2 solid hours of an icebag application to his left cheek. But at least he has no discomfort, so that is something.

Now, what he does continue to have are fevers. The ID doc. was in today also and she feels that the fevers are basically from the neutropenia(low WBCs) and not any dangerous infection. Bob felt good today, and looked good also. He is back on IVF's since he is having a high urine output, and they don't want him to become dehydrated especially in the face of his fevers. They aren't sure exactly why he is putting out so much urine, so they're checking his blood and urine electrolytes. As I've said so many times already, they are really on top of everything, and deal with each problem as quickly as it arises. His hgb and platelet counts were stable today, so he didn't need any transfusions. He couldn't get any laps in though , b/c of the BMB. He is still eating whatever comes on his tray, and again I have to give him high praise for that.

I think that's about it. I thank everyone for their extra prayers and good vibes. We feel them all, and know we are surrounded by your love and support, and that means the world to us. Please keep 'em coming as we await the results of the BMB.

All our love,
Bob and Mo