APL, Information and SupportInspired by Anita’s Journey through Acute Promyelocytic Leukemia

Well my disease is just doing weird stuff, my bone marrow envolvement has gotten worse and super fast, but not any real lymph node sweelings or tumors. Hmmm I dunno…. What good is once dose of steroids and my WBC went from a crazy 74.5 to 0.32 in one dose!
So I find out what my bone marrow looked liked the other day today. I also have 2-3 days left in the hospital then hopefully go to the condo for 5-6 days and then same protocol I am having now, but maybe outpatiant.
They may add on the 2nd part of HYPER-CVAD which has had good results with this trail and if so I will want to go home to Birmingham for that just to help me menatally. If something pops up though right back to MDA of course.

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I follow your posts and I want to tell you that you are so amazingly brave. You are stronger than this disease so you will beat it. I hope you get the “mental” break you deserve.

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Here is my caringbridge page if anyone missed it:
http://www.caringbridge.org/visit/zachmc
[This message has been edited by ZachMan (edited 03-07-2008).]

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Well back at the condo, been eating alot since the steriods I was/am on haha.

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Zach-
Keep eating as much as you can- what are the things that are tasting good? Or is everything tasting good???
I am happy you are at least back at the condo. STAY STRONG- you are a warrior.
Lea

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Everything tastes good haha, pizza, pancakes, cheese, soup, etc.
I forgot the name of this last protocol I was on, but it wasn’t too bad, I get another round of it the 19th-24th, except outpatiant this next time. We’re just keeping my counts as low as possible….its getting old being transfused 2-3x a week though sigh….

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Zach,
Glad you’re back at the condo and eating well. Keeps the strength up! Enjoy it! I’ve learned you take small pleasures where and when you can. Hugs – Jeri

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Hey Zach,
I know it is hard going in all the time for transfusions but isn’t it great to be out of the hospital. Just reading your posting makes me hungry. Glad the food taste good.
Paul

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Zach,
So glad to hear that you are back in the condo! And enjoy the pizza, pancakes, and everything else that sounds good (I know I am definitely craving pizza after your post!).
All the best.

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Glad to hear you’re eating. Don’t forget you need extra protein to rebuild the damage from chemo, so put extra pepperoni on the pizza.
I found eggs were a good easy way to get protein.
Just make sure you cook everything hot and if you like pepper, add it during the cooking not after.

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Zach, you do so well with the changes. I’m glad you’re doing well (enough) I’ve been thinking a lot about you while I was gone.
Blessings

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Thanks everyone, yeah I just take the hits in stride, but it sucks being the guy at MDA in a room of 50 patiants and they all listening to you about what all has gone wrong and everyone feels bad for you.
I mean I have no clue whats going on with me, I am on something new every month and right now the plain is to just keep my counts zero and get another round of whatever it is I had (see I am getting lost I’ve had so much chemo, lol)
I tol Dr. T I was getting tired and really needed to go home soon, not sure if a few days will do it either. I like being alive, but these consistant struggles everyday to get nowhere is getting old. One week zero blast, next week 80% blast, etc..I keep fighting cause my stuff is so so sensitive still to chemo, but man its aggressive and the 18+ rounds of chemo in 1.5 years is taking its toll.

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Please don’t ever give up Zach. You are too young and you can beat this. Just always remember you are stronger. My sis was told by her nurse to freeze her Ensure shakes and that might make it seem more like a treat. It is kind of funny though – my sis said after being the patient now (she is a clinical nutritionist specializing in oncology) she wishes she could go back and take every lecture she has ever given. You never know until you are in the bed. She now would go back and tell them, “I will be happy with any calories you can put in and however you want to get em”

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Sorry cgrobin – obviously following the neutropenic diet! Do you guys also have to throw away unopened food after 48 hours? Getting fatter on my sis’s leftover Little Debbies

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Zach,
Your life is precious and there are many that have no choice about when to stop fighting for survival. You still have a choice and a chance to live.
The medical literature is full of stories about patients that have survived all types of terrible health challenges. You could certainly be one of them. Grab one of your Dr’s and ask them – “Could this turn around?” Don’t ask how likely – just ask them if it is possible. I know what they will say – hang on to their answer and run with it.
Also, its great to see all the support from the community here on this board for you. At the same time, I hope you are getting excellent and forceful support from your family and loved ones.
I would like to hear more about how your loved ones are supporting you.
Things are rough for you now, maybe even terrible at times. I think the hardest thing is just no relief for you – for such a long time. Handling tough events is one thing, but when troubles drag on for so long that’s another matter.
I admire anyone that has fought as hard as you have already. In my eyes, you are a special and powerful person. Guys like you are the real super-heroes – not “pretend” heroes.
Despite all this hardship, your health could still improve. You are young and a lot of smart people are fighting along side you to help you get better.
I have seen what leukemia can do. I have gone through some very difficult times with Anita. Pale, terrible mouth sores, so weak she cannot walk, seemingly endless fevers – I think many of us here know too much about this stuff already.
Anita won’t ever be fully out of the woods either – but then who will? The answer is simple – no one. We all live without any certainty about what tomorrow will bring.
There are moments though where living pays big. For example, last weekend, Anita and I traveled to the desert near San Diego. We saw an incredible bloom of wildflowers that literally carpeted the desert sands around us for thousands of feet in every direction.
The sweet smell of the flowers was incredible. The Wildflower experience somehow seemed to balance some of the hardship we have been through this last year – even though it was such a brief thing.
Wildflower moments of all kinds could be in your future.
Its difficult to close this post. I’ll add one more thing. I want you to challenge your loved ones to entertain and encourage you. Have them bring movies that you want to watch – and watch them with you. Bring pictures from the past – and look at them with you. I want you to ASK for your loved ones to help you get through this. It almost sounds stupid and sort of impossible – but you have to find a few ways to have a little fun as you muck through this leukemia crap.
So many people asked if they could help Anita during her treatments. My usual thing was “Oh no – we’re fine etc.” I didn’t want to put anyone to any extra trouble. Slowly, in more recent times, I have become a little smarter about this.
People want to help and many actually consider it a great honor to help someone fighting for their life.
I’m pulling for your Zach – please keep fighting!
Chris
www.aplblog.org [This message has been edited by chrisgru (edited 03-14-2008).]
[This message has been edited by chrisgru (edited 03-14-2008).]

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Hey Zach,
Just think of all the people in the future you’re helping by being the Guinea Pig for them to figure this stuff out.
I know it’s got to be a pain. I still have moments where I’m just sick and tired of being sick and tired. And I had a smooth SCT experience. I can’t imagine what it’s like to be in your skin right now.
But the good thing is that, while you’re not necessarily making any headway, you’re not losing any ground at this point either. That in itself is remarkable.
You are a remarkable guy. Your strength is an inspiration to many. Just remember that when it gets to be too much. You are bigger than this disease.
Blessings

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Hello to all on Zach’s team! Go, Zach, Go! I’m just back from a trip so had to get caught up here. I have such a mix of disappointment and hope but I will never give up on you Zach. Your strength and courage is such an inspiration.
Chris, what a lovely post you put on here. I am hoping for many wildflower days in the future for Zach too. I can’t wait for the day he gets to go back to Alabama for a break.
God bless you all through your journeys.

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Zach,
Hang in there buddy. You can still fight through this. I’m sure it can get frustrating when your days are filled with nothing but treatments, docs, nurses, etc. but keep your mind focused on the fight – big picture thing.
I remember my sister saying that she felt bad because she kept encouraging me to fight and since she wasn’t in the bed, she really didn’t understand what is was like for me. I told her that when no one was there physically, I always felt that someone was with me in the room in spirit and I counted on that. So when you’re alone, count on us being “with you”.
Kelly

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Hi, Zach.
I know I can’t understand what you are going through– but I do know that you are fighting an amazing battle and are young and strong. And we are all here supporting you and praying for strength and healing. Just know that while we aren’t in H-town with you (I’m a displaced Texan) we are there in spirit cheering you on.
Best.

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quote:

Originally posted by mlpastorello:
Sorry cgrobin – obviously following the neutropenic diet! Do you guys also have to throw away unopened food after 48 hours? Getting fatter on my sis’s leftover Little Debbies

I believe I was told three days. So often I’d keep eating the same thing to try to finish it in 3 days.
If you have too much of something, take off portions that first night and freeze them. Then when you don’t feel like cooking you have things ready to eat.

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I’m on W&W until it either “blasts off” or goes away, so I don’t watch this forum much, but I’m on your team Zach for what it’s worth! and anyone else who needs an ear or someone to lean on. If mine goes wild it will be a T-cell thing too, so I have a special interest! (((hugs))), Yvonne

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