Day 22 Admission Day 2 High-DAC Chemo
Dear friends and family,
Well, you have probably noticed the change in the title. We learned last night(2 days early) that the first round of chemo was not very effective. We won't be given percentages until Thursday, but the preliminary blood smears of the bone marrow showed very little change in the leukemia. So Bob was started on high dose Ara-C(hence, high-DAC) at midnight last night. This was not something unexpected...75-80% of AML pts. need a 2nd round of induction therapy chemo. It was a little surprising to get this news so quickly, however. ARA-C is another name for cytarabine, one of the original agents used 2 weeks ago. But this time around the dosage is 30 times greater. This is scarier, b/c the risks are obviously higher. The drs. expect Bobs' white count to fall quicker and stay down longer, so the chances of infection are much greater. This dosage can affect lots of other things too, one being your eyesight...so Bob has already been started on steroid eye drops. He's also back on the decadron(steroid)-zofran regime to prevent nausea, so he'll be getting the added benefit again of painless joints, increased appetite and elevated mood(gotta look for the silver lining, right?) In fact he had no fevers today and got 3 laps in before lunch. He was bushed however after washing up, and needs to rest after any exertion. He ate a good lunch(taste buds...who needs 'em?) and than started on The Two Towers. By the way, Istari6, Bob says to tell you he's reading the trilogy again. Bob is also back on IV fluids, so he lost some freedom, as he's always attached to the IV's and pump. The chemo is given twice a day over one hour, so he also needs to rest while that's infusing. He'll receive a total of 12 doses, so we're looking at another week to give the chemo, and than another 2 weeks for the counts to fall and rise. I don't know if I explained too clearly, but the goal is to wipe out the leukemic cells from the marrow. Unfortunately, the chemo also wipes out any good red or white cells and platelets. So we can expect many transfusions of blood and platelets to come. Our hem/onc MD, Dr. Luger and the attending, Dr. Perl both spoke w/ Bob today(I of course just missed them even though I got down there early) and told him that everything that's happened so far is exactly as expected. That is comfort of a sort, but it hurts me so to see Bob have to go through this. He is such a good man and so undeserving of this trial. Forgive me that maudlin moment, but anyone who knows Bob is certainly shaking their head in agreement. Thank goodness Bob himself does not dwell on that, but being his practical self says this is the hand we're dealt, and we have to play it. So, I take my cue from him and soldier on.
Honestly, this wasn't meant to be a depressing post. In fact, Bob was quite chipper today and had some more comments:
To sweet, little Kim, Bob says he's always prepared for a "blue" streak from your mouth. He remembers the old days in ICU.
To George and Aniko, Bob says it's very good to hear from you, and you should use more Amarone and less amiodarone.
To Hatfield Girl and Music Man(new moniker?), Bob loved the specially-tailored, check list get-well card. Very original.
To all the "elderly" bloggers out there having trouble w/ the small type, Bob gave me a hint for you. You can increase the size on your computer by going under VIEW on your toolbar, scroll to text size and choose large or larger. Whaddya know...this actually works, I tried it.
To Kate, Uncle Bob says hang in there kid...your braces will be on and off before you know it. And make sure you show those beautiful teeth when you smile, not like your sister.(Sorry Meg).
I'll sign off here, asking as usual to please remember us, but especially Bob, in your prayers. Also tonight, I'd like to ask you to add one more name to your prayer list...Kathy is my sis-in-laws' best friend who is undergoing colon surgery tomorrow. Anne sends her appreciation for your prayers for her.
Thank you one and all for all the support. It means more than I can say. Until you're actually in a position like Bob and I find ourselves right now, you have no idea of what it means to open a card,read a blog, or get a call from someone who says...just thinkin' about ya'. Believe me, it helps. Thank you too for letting me ventilate here tonight. We love you all.
All our love,
Bob and Mo
10 Comments:
Hey Mo.. vent on.. don't ever feel badly about showing your feelings.. we all are upset about bob going through all this and just can't wait till he's better and all this is behind this.. must admit..it sounds like he is being so brave about everything..your tougher than you look Dr. Mazzola!!
Nothing new to share today.. the weather is finally turning nice here, which means baseball every weekend(but i love watching it)..called Patrick up today and apparently it was in the middle of class( i wanted to leave a message on his cell, but was it turned off??no).. anyway, next thing i know , his teacher called me back, teasing me, asking me what i wanted to chat to Patrick about!!kind of funny..
Kim, glad your back...it's been a while.. are you still short?? ttyl.. take care Mazzola's ... good blog update tonight mo.. mdf
Hey Bob and Mo,
You guys are so amazing..keeping your chin(s) up while going thru such an ordeal..but you must, even if it is one day at a time..or an hour at a time...Mo, its ok to vent...I can only imagine. Man, I am rooting for you guys, praying my heart out and cheering you on. You are at the BEST facility for this type of treatment and the Docs are right on top of your illness. ..Love and prayers
Glo
dear Bob & Mo, I keep reading of the progress or no progress and I choke for lack of words to express how deeply we feel for youall. We all are still in the hands of God, that alon will get us thru. love , stella & joe k
Bob and Mo,
You have remained in my prayers. Have missed a few days. Just had to spend some time catching up on the past few days. Well, it sounds like you have a bit more to fight through. Will kick up the prayers with the increase in the chemo. Bob, take care and know that you are loved by many.
Mo, vent as needed, thats why we are here.
I am off to Cape May tomorrow, will be back on Sunday. I will catch up then. Bob, take it easy.
love and prayers,
jean
Dear Mo and Bob, Just wanted you to know that I'm thinking of you both and keeping you in my prayers. You both have a great attitude and that will help you get through this. Please let me know if I can do anything to help.
Love, Mary Gerhart
Hi Bob and Mo,
You said it so well Mo, Bob is just too good of a guy to have to go thru this stuff ( wanted to use another word). So sorry that round two is necessary but if it means getting Bob well and back to home then "bring it on"!
I don't know how else to say it but the two of you are models of dignity and determination with a dash of humor during a really rough siege. My heroes.
Mo, thank you for mentioning Kathy in your blog today. She is another great person who faces a real challenge. So indeed the prayer/vibe list just gets longer and stronger.
Sat. is mom's party. All is a go except the weather forecast. I can just hear her saying "No, I'm not going out in that rain" It may take a crane but believe me she is going.
Mo, I am sending a very special prayer to your regular e-mail address.
Love,
Anne
Hi guys,
Oops, don't know why but I am now commenting three times....someday I will get a handle on this new fangled contraption they call a computer.
Anne
Good Morning Bob,
Perhaps not the best news, but sometimes you have to walk thru "it" (notice, I left the sh off), to get where you need to be! Where you need to be is home, and I agree with Anne, if this is the route you have to take ...might as well get going.
So, rest up when you can, and keep eating that God- awful food for strength!
Love, Kim
By the way MDF, I am still short. Some would argue short(er).
Hello Robert, This my second try , as the first one disappeared. Sorry to here that you are going to stay a few more weeks but hopefully this high dac will do the trick and you will be on your way.You and Mo are keeping such a good attitude and Mo writes the sweetest things.You sound like lovebirds. Keep up the laping as you feel able especially if the steroids ease the knee pain. Nap when you can and know there are lots of us who are praying every day abd thinking of you both all the time. Lots of love dt
Mo and Bob,
We're sorry to hear the disappointing news that you had to begin the HiDAC two nights ago. We hope and pray that the chemo is well tolerated and that you are able to keep up your great attitude! This is a journey, and if you are able to continue seeking the positive admist all of the negative, it will make the voyage more bearable. I'm so glad you have each other to cling to for support. Stay strong and know we're thinking about you and praying for you always!
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