Tuesday, August 17, 2010

Elvis Has Left the Building, and He's Packing

It's called Hyper-CVAD and it is bad-ass.

For the next 6-8 months it's also our new best friend and ally in this war on cancer. Hyper-CVAD is the name of Phil's chemotherapy regimen and it is literally an all-out assault on the lymphoma that has taken over his body. If you've been following my posts then you know what we're up against here. You know that we want the most powerful, state-of-the-art, nasty, down-n-dirty, pull-out-all-the-stops treatment there is. Well, folks, this is it. Hyper-CVAD. Sounds like a nuclear weapon and isn't that what you want to hear at a time like this? The big guns.

Brief intermission:
I am at the hospital and the nurse is getting things going. She just brought in a "chemo spill kit" in which she will put all the spent IV tubing, bags, etc. It is also here in case she spills something on accident. It is basically a hazardous waste kit and has all the typical markings on it you would see at a nuclear facility. She also informs us that she will be donning a special "gown" every time she infuses Phil with his chemo in case she get's any on herself. Yeah, THOSE are the drugs we want. Hyper-CVAD baby.

Basically it will go something like this. Every 3 weeks, Phil will go into the hospital for the first part of a two part regimen consisting of 4 days of IV chemotherapy with a combination of multiple powerful medications. Those medications are:

C= Cytoxin (cyclophosphamide) which alters DNA
V= Vincristine (Oncovin) which blocks cell duplication
A = Doxorubicin (Adriamycin) an antitumor antibiotic
D= Dexamethasone an anti-inflammatory steroidal, immunosuppressant

Like I said, this is just the first part. After another 3 weeks he will be admitted to the hospital again for another 3-4 days during which he will be giving high doses of methotrexate and Ara-C (cytarabine) which will complete the cycle.

As if all that weren't enough, tomorrow he will have a spinal tap to diagnose whether he has CNS (central nervous system) involvement. At that time he will be given a dose of prophylactic chemotherapy into his spinal fluid. If his test is negative he will get several more prophylactic treatments in his CSF (cerebrospinal fluid). If it comes back positive he will be treated very rigorously and will need to have a small reservoir put into his scalp to feed the medications into his ventricles directly/weekly for the rest of his treatment regimen.

If you, like us are feeling blown away by all this, join the club. The line forms to the rear. It is a lot to take in at one time. But believe you me, you WILL absorb it somehow even if just enough to move on to the next blog entry. We are still in the process of absorbing these truths for ourselves and for our children and certainly haven't yet fully felt them. But now that I am sitting here watching our cheerful and wonderfully skilled nurse Abby gown up and begin to administer these meds to my dear husband, I know there will be time for that in the days to come. Right now, it is definitely GO time.

Strange as it is to say, even though we just got word of this diagnosis 7 days ago and have barely had time to digest it, we have really been looking forward to this day. Today means we get to DO something. Today means we get to strike back. Today means we get to have a say in what happens from here on out. Passivity ends here.

Romans 8:28, 31
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

What, then, shall we say in response to this? If God is for us, who can be against us?


10 comments:

  1. I was thinking about you and praying for you while taking a walk around the neighborhood this morning with Tod the Gorilla Dog. I am so glad you are with family and warm sunshine but it is hard not to be able to stop by and say Hi or pray together or sing "Great is Thy Faithfulness". But love and prayers from here are constant.

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  2. Sally and Phil,

    Know that we are all there with you in heart and soul. Positive prayers, thoughts, vibrations, waves, inklings, and notions are being sent to both of you throughout our days here.

    May G-d send each of you, Phil, Sally, Bennett, and Olivia, the strength you need to cope with your individual and collective challenges ahead.

    Love one another.

    FIGHT LIKE HELL!!!

    We love you. StepKarGrEmIdgy

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  4. OK, my chance to comment here. I've been hesitating all week cuz I just don't know what to say. So many thoughts, so many emotions, I just can't stop thinking about you all, I even was dreaming about you guys this morning. Weird....it's like, we all just wanna DO something but feel so helpless. I KNOW prayer is powerful but for some reason I want to do more, as though there's something "better" I could do, though I know that's not true. I just have such a hard time understanding God sometimes and why He allows what He allows. However, I also believe that regardless of what we see, He still wants us (me) to pray, and to pray aggressively. So though I don't get it, I will still pray.

    I do have to share one thing....last night I was holding Amelia and praying and you guys came to my thoughts. So I started to pray for "Mr. Phil." Amelia and I asked Jesus to "heal Mr. Phil in the powerful name of Jesus." Amelia then chimed in and began to repeat her own version of prayer for "Mr. Phil." Hers went like this: "Jesus, please heal Mr. Phil...and the thermometer...in the hospital....OK? Understand?"

    On another note, we were out in Kriegers' boat last night. As Kevin was texting you, I hear he told you the gang (Kriegers, Kienles, Mayers) that we said, "Jello". :)

    We love you guys! You are in our prayers constantly! And we are praying for no less than miraculous, complete, and speedy HEALING.

    Heather

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  5. I thought of you guys at 10:00 EST this morning and all throughout the day. I hope the big energy coming from Farmington, Maine made it. LOTS more to come.

    It doesn't surprise me that Phil was able to make friends with just about everyone he came across - while he was preparing for round one of chemo-blast; that is just the kind of person he is.

    I do believe in the power of positivity and the power of thought, prayer and the interconnectivity of us all. Our whole family is behind your whole family.

    It was wonderful to hear Phil's voice last evening - sounded like my best-friend-from-PA-school - any distance associated with 14 years and 3,000 miles melted away in a moment of conversation.

    Give the guy a big hug from me.

    David (and Heather, Zoe, and Gretchen)

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  6. hi Sally--
    I'm a friend of Phil's from high school and LONG story short, a very circuitous route has me posting a comment to your blog--my apologies for my delving into your private lives but I wanted to mention a book that might be inspirational to you right now.

    The title is "An Eagle Named Freedom: My True Story of a Remarkable Friendship" by Jeff Guidry. Guidry works in wildlife rehab in Washington State and bonded with an injured eagle at about the same time he was diagnosed with non-hodgkins lymphoma and he and the eagle lent each other a spiritual support during one another's journey to health. I think for what you both are about to undertake, it could be something that might resonate and provide some needed moral support.

    I found out about it because Guidry's editor asked if I would do a book blurb for the cover since I have a memoir out that is about a parrot. His editor had sent me a few copies, so unless I've given them away already I'd be happy to send a copy to you guys. If you're interested just email an address to me and I'll get it out to you. Also I suspect there are going to be long, arduous hours of waiting ahead and perhaps at times Phil will be up for reading. if so I would be happy to collect up some books from author friends to send out to him--just let me know (you can email me at jennygardiner at mac dot com) and maybe give me an idea of the type of books he enjoys.

    I hate that you all are going through this and send thoughts and prayers your way.

    Best,
    Jenny Gardiner

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  7. Phil,

    Long time, no see.... But it seems like yesterday when I was being awe-struck and amazed at your skateboard savvy, and your big heart, big smile, and big head of shaggy, curly blond hair! Calvary Camp days, and getting to know and love people who were SOOO impacting my "impressionable years" has made me the person I am today.

    Hang in there, buddy... We're all fighting for you and with you!

    Dave Ritter (aka Rave Ditter)

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  8. Phil and Sally,

    Donny and Denise just sent me a message updating me on what's going on. It's been a long time but my thoughts are with you all. I'm not sure if you're in WA any longer and if you're being seen at Fred Hutch. Let me know if I can do anything - I was at the Hutch specializing in BMTs. It's been awhile but those were some well ingrained memories! Plus I still have my Hutch contacts including all the lymphoma gurus I worked with.

    Fighting with you,
    Quynh Nguyen

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  9. PS - Theresa Lucatorto is battling leukemia and has had a BMT at the Hutch.

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  10. Phil and Sally,
    You don't know me, but I am a friend of David Ritter, aka;Rave Ditter.
    I just want to let you know that you and your family are in my prayers for a full recovery of this dread disease. I too have cancer, though not as life threatening as yours. Mine is Bladder Cancer and I have received much support from David and other Christian friends and non-Christian friends from all over the country. I believe that God's will for all of us is to be well, to work in His Kingdom.
    Blessings to you and your family,
    Joe Beckey
    Community of Celebration

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