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.

Sunday, February 24, 2013

One more thank you!

See, I knew I'd forget...but we'll call it saving the best for last. A big thanks to my niece, Kate N. for making a grocery store run yesterday and also for the surprise gift from Bath and Body Works...a gift box of soaps and lotions in one of their fresh, new scents...tangerine! I love it Katydid and you!


Saturday, February 23, 2013

Hi everybody!!

Dear family and friends,

This week has gone by so quickly I can't believe it! I think I sleptwalked? through most of it though, as Bob was awake about every 2-3 hrs. and me with him. I've been sleeping the sleep of new mother's...where you hear every little peep. What's a little worrisome is the absence of siderails on the bottom half of the bed, and Bob likes to sit on the edge to fiddle with his cd's or kindle if he wakes up. Anyway, I think we finally have the right combo of meds. and last night he only woke up around 4am and we did a little repositioning etc. and we both fell back to sleep til 8am. It was bliss. I actually felt human today. Got all the wash done, made a big batch of applesauce, changed some sheets, washed some floors and was about to make a pot of potato-leek soup when our dear friend called to say she was bringing us her famous, homemade biscotti(anise) and pasta fagiole. So that was dinner done! I would say we ate like kings, but as Bob says, that's Italian peasant food, something that his Mom had to be coaxed into making, since she was always astonished at how much her family liked it.

And speaking of food, I've really been remiss with my thank-yous in that department. I have barely had to cook at all the past 2 weeks. I think I mentioned the beef stew that my cousins John and Connie sent over, 3 batches in fact. In addition, we also were treated to takeout from Red Lobster by our good pal, Jean R., who also brought back lobster mac n' cheese and NE clam chowdah from Cape May's Lobster House on another night. Brother and sis, Bill and Ann visited last week and served up meatball & provolone grinders, Italian wedding soup and Ital. hoagies. Carolyn and Jim S. stopped by for a visit and brought us homemade chicken soup, with the big fat noodles Bob loves and one of his favorite desserts, pineapple upside down cake...ooh, it was good. This past Monday our buddy Holly S. brought 2 pans of her world-famous(I'm not kidding) homemade mac and cheese...it's the best!Then on Tuesday, cousins Rick and Joan C. made a Carlino's run for Bob and brought him an antipasto platter(his request), and lots of juices and baked goodies too. You can see why the stairs are getting harder to climb...pretty soon I'll be using the stair chair! Oh and Megan brought lasagna that is still in the freezer and a platter of Italian baked goods. And my brother brought us roaster chickens and danish and all kinds of stuff. So thank you, thank you one and all. I hope I'm not forgetting anyone.

Now, while we're on the subject of thank you's I want to say how grateful I am to everyone who responded to my request for helpers to be with Bob while I am at work. When we first went onto hospice, I thought that wouldn't be neccessary afterall, due to the gravity of Bob's condition. However, now that he's improved since those first few days, I think I'll be going back to work next week. So I'll be back in touch.

Now I just want to quickly share something that happened last week. Bob regularly gets e-mails from his alma mater, St Joe's Prep and from his specific class of '58. Last week when checking e-mail, I saw one about an upcoming Communion Breakfast from his classmate, Tom Prior. I replied and asked Tom to please place Bob on the Preps' prayer list. Less than 30 minutes later, I received a phone call from Tom, introducing himself and asking me, what, exactly he could do to help Bob and I during this very difficult time. I was astounded. Since that day we've received numerous e-mails, phone calls and cards, filled with loving notes of encouragement and strength from classmates all over the globe. Tom also sent Bob a book about their classmate, Fr. Rob Currie, who has dedicated his life to improving the lives of others in places such as Appalachia, India and Nicaragua. This was an especially touching gift as it contains much information on the people who touched Bob's life in his 4 years at the Prep. Thank you also to Fr. George Bur, the President of  St. Joe's Prep for your message and for remembering Bob at Mass. Bob is also being remembered in masses as far away as China and Nicaragua, as well as in Philly! So thank you to all the Preppers for reaching out. It's apparent that you are men of compassion, conscience and integrity, practicing in life what you were taught so many years ago at Girard Ave.

And as always, our love and thanks to our faithful friends and family for seeing us through, for your prayers and messages of encouragement. We wouldn't be where we are w/o you!

Well, I don't think I actually said too much about how Bob is, other than you know he's eating well. And he is eating hefty portions. Once he stopped his meds (the big guns like, anti-rejection, anti-fungal, anti-virals) his appetite returned and his taste! He's actually enjoying eating again. With almost every bite, he says, "mmm, that's so good". Boy, it does my heart good I tell ya'. He's still weak, only walking to the rocker or BSC., but he's enjoying his collection of cd's I dug out of the basement. I had to search cuz they were in a box we never opened that came back after the fire. So how's this for eclectic....Coltrane to Meat Loaf to Wagner, Tommy Makem, the Chieftains and the Dubliners, then Tosca and Foreigner, Queen and Little Feat, just to mention a few. He's also listening to a Shelby Foote novel on his kindle(who knew it had an audio reader?? Not me) alternating w/ a book on Genghis Khan! And he naps a lot too.

Phew! I think I've gone on(and on and on, I know) for long enough now. I'll say Good Night and God Bless you all. And I'll try to be better about keeping up with posts ;-)

All our love,
Bob and Mo

Sunday, February 17, 2013

Rhane's here!!!!

Dear friends and family,

Well, it's obvious that you are all storming the Heavens with prayers on Bob's behalf, cuz he's very stable. He's eating like his old self...pasta Carbonara, lobster mac n cheese, NE clam chowdah and of course, that's a good thing. He's also able to walk a bit and even sat up in a chair for 2 hours today.
 It's also a good day, b/c our granddaughter, Rhane is here from Mass. She and her Dad had a good visit with Bob while he was sitting up, and now he's taking a nap.
Oh, and Bob, after persuading me to do the deed, is now mustache-less. Actually he's completely hairless on his head, as he wanted his head shaved too....well, he still has eyebrows and eyelashes. To tell the truth it's freaking me out, cuz w/o the mustache, he looks like a bald version of his Mom...sorry Catherine. I know you would never want to be thought of that way, but he does!
So, our house has been a happenin' place. I'm sorry I haven't answered everyone's calls, but that usually means I am physically assisting Bob. I know you are all thinking of us and sending well-wishes. If Bob continues to improve, visitors would be most welcome this week. For now, Matt and Rhane are the best medicine for him, and will only be here til tomorrow night. Gotta run, Matt the IT guru needs to work on the PC...he has been a Godsend to me these past few days in so many ways. I'll write again soon.

All our love,
Bob and Mo

Friday, February 15, 2013

He's hanging tough!!

Hi everyone,

Well, this has been a week of ups and downs....usually bad nights and good days. However, currently, all's right with the world, b/c Matthew Mazzola is at Bob's bedside! Always the apple of his Father's eye, Matt has trekked up fom Tenn. to be with him. As I write this, they are both having a good convo with our aide Theresa, who is a wonderful person and knows how to give a mean bad-bath...so she is A-OK in my book!

Anyway, Bob is stable right now. He's eating and drinking small amounts, and his vital signs are good. But he's having more trouble with his breathing and generalized pain and needs morphine about 3 times/day. He's too weak to walk more than a few steps, but is comfortable in the hospital bed.

I relay all your messages of love, prayers, and encouragement and it touches, and I think, surprises him to know so many people are thinking of him. When I tell him, "so and so is praying for you", he says, "good, that's good. Thank them for me." So I thank you all, for everything, on Bob's behalf and my own. I hope to keep in touch more often now that Matt's here. God Bless you all for seeing us through thus far.

All our love,
Bob and Mo

Tuesday, February 12, 2013

Comfortable right now

Good morning all,

Just a little blog to say Bob's having a good am. He needed morphine through the night, but now seems well rested. He's had a bed bath and breakfast of oatmeal and OJ, and now is, in medical parlance, resting comfortably!

Bob and Mo

Monday, February 11, 2013

"Winding Down"

Dearest friends and family,

The title quote is something that Bob said to his sister Santa when she was here with him Thursday. He also used a car metaphor, talking carburetors and engines, but being dumb girls we couldn't figure that one out. The heart-breaking truth is that Bob is declining rapidly. He went on hospice on Thursday, after having a bad day Wednesday( trouble breathing) and making the decision that he does not want to go to the hospital anymore. The plan was that we continue all meds and try to stay the course, but he's just too tired to carry on. It's taken me until today to completely acknowledge the fact that Bobs' time here is, as he says, "winding down". He's received liquid morphine a few times for his breathing, and of course it makes him comfortable, but sleepy. He's wearing his oxygen continuously now and a hospital bed is being set up as I write this. He's still eating...beef stew last night, courtesy of my cousins John and Connie...and his perennial oatmeal this am...well more like lunchtime, actually. And eating wore him out and now he's sleeping again. We will transfer him to the hospital bed soon and then he'll be more comfortable and I won't have to worry about him falling 3 1/2 ft. to the floor. The hospice staff has been wonderful.

I find it hard to believe that I'm writing this, but when I think back to Bob's first hospital stay, when he failed the induction chemo and the repeat high-dose chemo and he was told to "get his affairs in order", well, how blessed we both were to be given this gift of the past 7 years. It was 2003 that he banged his shin, got a whopper of an infection that never healed, which lead to sepsis, which finally lead to the diagnosis of myelodyplastic syndrome. Then 2 years of more infections, bleeding problems, daily nupogen and epogen injections, thrice weekly platelet and RBC transfusions, before it changed to leukemia. A clinical trial of revlimid, after the failed chemo, lead to a year in and out of remission. Then finally in 2006 Dr. Luger said his marrow was good enough to go for the transplant and the search was on for a donor. He had several very good matches, but of course the single perfect match was found in his donor Mikhail, from Germany and on May 25th, 2007 Bob received the stem cell transplant, very anti-climactically as I recall. It was like getting a blood transfusion and he did beautifully. But the point was, ( I guess I just had a little cathartic moment there), that life is a gift, no matter how much time we're given. And Bob is and always will be the greatest gift I will ever receive.

Please continue to remember us and pray for peace and comfort for Bob and strength for me. I'm not sure how I'm going to make it through this.

As always, with love and thanks,
Bob and Mo

P.S. On a lighter note, I'm crying as I'm writing this and freaking out the poor, young kid who's setting up the bed. I'm sure he's thinking,"why me God, why me??"

Wednesday, February 06, 2013

A little help from our friends

Hi all,

Just writing to a few folks who have said in the past, "if I can help, let me know". What is it they say? Be careful what you wish for? Well, here we are.
 Bob has lost some ground and over the last few days has been weaker and not getting around as well. He's had a few falls, though no injuries, thank goodness. We've switched from our Bayada home care program to a program with HUP called "The Caring Way". It's supposed to function as a bridge between regular home care and hospice. We had broached the subject of hospice with Dr. Luger, mostly b/c more help is available. Unfortunately in hospice, things like PT, OT, lab draws and possibly even his anti-rejection meds are not allowed, since they're not considered palliative, and Bob right away said "no way, not doing that yet".
So we switched to the Caring Way which has started to provide us with a HHA(home health aide) 5 days a week for 2 hrs.a day...which is great. Unfortunately, I work 5 to 10 hour shifts, depending on which job I'm at and generally work about 3 days a week. I'm looking into private pay aides but so far the rates I've found are 20-22 dollars/hour, which would mean that I'm running my tuchus off for less than $10/hr., when the bulk of the time here with Bob will be spent sitting. Bob needs assistance to walk to the BR. He walks with the walker, but is having a tendency to list and lean, so I just shadow him. The aide that's coming will have him bathed and dressed...sigh, sometimes I find it hard to believe that I'm writing about my husband. Anyway, he'll be clean and dressed. He will most likely need help getting meals. He can feed himself. We have a stair lift and he's stable and confident using that, but when he comes downstairs there is one step from a landing that I always spot him at.

Well, I started this e-mail 2 hours ago and am just coming back to it. Have been spending lots of time on the phone(which I detest)trying to get a plan. But I need to go, so I guess to sum up, I'm asking if anyone would come to sit with Bob while I'm at work. I'm not trying to pressure anyone or make anyone feel obligated, but I know Bob has touched a lot of lives and means a lot to many people and if you want to help it would certainly be welcome and appreciated. Please bear in mind this is not an easy thing for me to ask either....like most nurses I know, I think I should be Superwoman, able to do it all in a single bound. Ha!

 I'd also to like to ask for input with hiring home care or if anyone knows someone reliable who does this for a lower rate, please let me know. Well, that about wraps it up. Gonna post this on the blog too, just to try and get as much feedback as I can. Thank you all. And please don't feel worried or embarrassed if you aren't able to help, cuz I know I'm sending this to people who work or are already taking care of their own relatives, but I'm including them to pick their brains. Alright, enough!
All our love,
Bob and Mo

The above is an e-mail that I just sent out to family and friends. I decided to include it here on the blog b/c I know there are people who read this who can possibly give me some insight or help. Thank you in advance for any input you can provide.