Thursday, October 22, 2009

Another discouraging day...

Yet again. It was another discouraging day for us. I had great hopes to drive to the clinic today and be done with this round. Get Ally off of her fluid and get her feeling better. Only to have my hopes taken away again after waiting three hours for her bloodwork to come back. Her level was .48....only down a bit from the day before when it was .64. (needs to be .1)

This is playing out like a broken record. Every day, I drive down there. Say hello to the same security guard. Get up the elevator while everyone stares at my bald child with the mask on with the tubing coming out of her shirt and tethered to me. Check in, get a room in the clinic. The blood draw. Waiting. Waiting. Learning to crochet (we are trying). Waiting. Getting the bad result. Grilling the doctor on what/when/whether I should be worrying or not. Back to the pharmacy...more meds. Get with the home care people and get a new bag of fluid and a new pump. Give Jerad the bad news...Walk out to the car. See the same lady in the parking booth who now lets me go without paying. Not sure if it is out of pity or because she sees me. Every. Single. Day.

And as such, we are scheduled to do it all again at 1:30 tomorrow.

Poor Ally. The fluid makes her feel bad. She hasn't eaten much of anything in a week. Because this chemo is not leaving her body properly, the side effects will be worse. They are currently worried about painful mouth sores. She also has belly pain. It all is hard on her internal organs, particularly the kidneys. I pray that she doesn't have damage. As of today, her kidney blood test looked okay.

So Dr. B upped the rescue drug...which protects her, but does not make it go any quicker. He did speed up her fluids from 145ml/hr to 150ml/hr. Maybe that will make her pee it out quicker. That is the only way to get it out. At least he didn't admit us...I was kind of mentally preparing for that.

The doctor also informed me that he could not get the MRD results for her. He has exhausted it, and he just can't get it. That is the minimal residual disease number that they tested with her bone marrow specimen about 5 or 6 weeks ago. The number I was just dying to know. He said we could try to find someone that will do it for us, but we would have to put Ally through the procedure again. Another letdown. I am trying to take it in stride. Maybe I am just not meant to get that number. It is certainly not for the sake of trying. I have worked every angle and every doctor to get it.

Finally, we talked about the next round of treatment. Ally has one more in-patient methotrexate stay and then we move on to the next round. And it is going to be very hard he tells me. Just like the first month. They repeat all the same meds again. So we have that to look forward to. It will start mid-November and go through the holidays.

All of the suffering, I know, getting old to read about everyday and even worse to live. Jerad tells me I can't tell you all of the clinical stuff anymore...too depressing. I am going to lose my loyal readership.

Soooo the silver lining to this picture is that I have wonderful friends who came to my rescue today. Lisa came and sat with Ally while I took care of Carly (and kept them apart). Lisa, Nicki, and Suzanne collected all of my laundry and did it for me. (It was a lot) Changed the beds. Ran the vacuum. I have several neighbors making me food. Pastor Gil and Keli spent over an hour with me trying to give me encouragement and making me promise to take care of myself and praying with me. And offering me the opportunity to do so.

I am not good about asking for help. Most of the time, I won't. I never want to be a burden to anyone. But today I gave in and I feel so much better tonight that a few things got done around here. So thank you so much for just stepping in and helping, no questions asked. I realize I can't do this all myself.

I am also thinking (and grateful) to one other friend of mine. George Arnold. He ran the Detroit half marathon this weekend in Ally's honor. George is a big tall guy...not really the running sort. Nothing against him, but just what it is. As he practiced for it, he said he would always think about Ally. If she can go through what she does, then I can do this. He said his back started hurting at mile marker 1. Again, thoughts of Ally pushed him through. And he did it! We are proud to have friends like that!

Maybe tomorrow will be our day. But if it isn't, I will just take it as it is. And maybe learn a little more about crocheting in the process.

11 comments:

  1. Dear Sweet Janel,
    You are not going to loose anyone that is following this journey with you and Ally. While the details may be depressing, it is knowledge and knowledge is power. This is the path right now. You and your family will never be a burden to any of us. We are praying and thinking of all of you everyday.
    Hugs to all.
    M

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  2. I read every day and don't know if I've ever commented. Please don't feel your words are too much for us to read . . .it gives us specifics to pray for and to know what you all are having to deal with. I can't even imagine your pain and struggles. So thankful you have the support system around you and good for you for accepting the help. Do that more! My prayers are with you and your family.

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  3. Terri Barnett ShumakerOctober 23, 2009 at 6:30 AM

    Janel anyone that truly cares will not stop reading just because it is discouraging. Maybe this blog is your way of releasing some of the feelings you have inside and if you don't blog about ALL of it you will keep it bottled up and will feel worse. Yes it is hard to read everything that you all are going through but also helps to keep us all connected to you. Please don't feel that you can't blog what you are feeling because it may upset others, if you feel like typing it then it may be good for you to do so and if some don't want to read it then be so.
    Take care and sending prayers and well wishes to you all.

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  4. Janel, I agree with Terri, this is your blog, remember that. You started it to help you remember what was working and what wasn't, and to chart everything that you're going through. It is for you, and we are just the lucky ones who get to read it and be let in on the details of how sweet Ally and sweet Janel are doing. Glad to hear that your good friends helped out yesterday and that Pastor Gil and Keli came, keep it up, you need to take care of yourself. much love my sweet!

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  5. janel,
    it has been a few days since i've commented, but i've read every day....and every night i've said a prayer that the Ally's body is able to flush that chemo out. And she is. Every day the number goes down. Maybe not as quickly as we would all like, but it is being processed. I'm so thankful you have close friends by to help. And I actually enjoy reading the medical stuff because it gives me hope that so much has changed since my dad had blood cancer 15 years ago.
    Keep your chin up.

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  6. I don't know you, and I certainly do not control this blog, but I'm instituting a new rule: No more apologies for venting or for reporting bad news! Getting things off of your chest is part of the therapy of this blog, so don't apologize anymore. You NEED to do it. Is it tough to read? Yes. It's heartbreaking. But you know what? It only invites more prayers, and that is not a bad thing. Hang in there!

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  7. Dear Janel,
    I read every day and have not commented, but today I want you to know that those of us who love and care about you and your family want every detail that you give. We are walking down this road with you all the way. We are all expecting scarves and slippers that you make!
    Love
    Elaine and Bill

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  8. I echo what everyone else has said, that whatever you want to say, whatever you need to say, then say it! You can't expect to paint a rosy picture everyday, because it certainly isn't rosy. You have good days where you get to tell everyone that Ally is feeling good and she's doing this and doing that. But then unfortunately there are those bad days and those are the days where you need to vent most!

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  9. I totally agree with the new rule of no more apologizing for bad news. This blog IS your therapy and our way of knowing what is going on with all of you. If things are not good, that is what you have to write - but you don't need to apologize. You will not lose this faithful reader or any of the others. I just wish I could be one of the ones who can come in and help when needed. Your glass is not anywhere near half full, but all your wonderful friends and family help to fill it every day. Your strength is awesome even on the worst of days.

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  10. I think it is very important we hear the 'medical' talk. Good and bad. In some strange way, it makes me feel like I am a stronger person and I can handle more because of everything Ally (and all of you) are going through. When I have a bad day or need to do something I don't really want to, I think of these terrible days and the not so pleasant medical terms, and I then tell myself to just DO IT! Do not sugar coat it, that is not your reality right now.

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  11. Janel...

    With every post a prayer goes up...some days a prayer of thanksgiving...some days a more fervent prayer for strength. You are relating your truth...and we are all here with you. Just try to remember that every day that dawns is a new one...full of promise...and hope...and God's grace. I for one will read this blog until you type the words...in remission...and then we PARTY!!!!!!! Until then i am saying extra fervent prayers for Ally and for your little family.... Peace friend...Jill

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