Relapse – and not the record label

Time for an update. It’s been a while.

Starting the end of July, I thought I had a cold. Maybe the flu. Just felt like crap. Figured maybe surfing in the nasty Pacific I had picked up an infection. Lost my appetite. Every once in a while I would gag on something and vomit. Got down to eating very little (like a chicken nugget for the day). Progressively, the vomitting became more frequent and I had persistent nausea. I went back to my onc, repeat CT showed all clear. Prescribed a few different things for nausea, tried this, tried that, no luck. Somewhere along the way I developed a limp. Foot drop to be exact. I had a small peripheral neuropathy on my right foot from the vincristine, but it progressed to my whole foot being numb and loss of function. I wrote it off to a bad back, must have slipped a disc. No biggie right. Well after a month of denial and daily projectile vomitting, my Onc convinced me to go inpatient and figure out what was going on. An MRI revealed 2 spots on my brain stem, 1 on the 3rd ventricle, and a tumor on my spinal cord right in the area to cause the foot drop.

Relapse. The worst word ever right. And not just relapse, but the 1% in a million relapse. It’s not supposed to come back, especially not in the CNS. I have to say I was devastated. The prognosis the first time around was reasonable. This time…not so good. There’s just not enough research or cases to have good numbers. No standard protocol for this. My Onc quickly referred me to UCSD Cancer center to see a specialist in lymphoma. A few days later, I was inpatient, started the new chemo plan, rituxan – Methotrexate – ARA -C. The plan is 3x of RMA ( I go in for round 2 Thursday) then on to a bone marrow transplant. And lots of fingers crossed prayer filled days.

I can’t lie, this time around it has been very difficult to stay positive. This chemo regimen has been brutal. I can’t do much of anything without getting short of breath. Last time I was running 3-5 miles every other day between treatments, now i can barely walk because of my foot problem. The neuropathy in my leg has become very painful (just started gabapentin for that yesterday). My labs have been all over the place. Platelets, potassium, and everything in between. I don’t feel like I’ve recovered from the last round and it’s time for the next one. I’m not looking forward to it.

I guess that’s it. At least up to this point. Certainly there is more than enough fight left to go, but there’s plenty of fight left in me. So I am going at it UFC style. Full bore.

Okay, enough miserableness. The next entry will be a positive one. As always, thank you for reading, and thank you for your thoughts and prayers. We appreciate every one.

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9 Comments on “Relapse – and not the record label”

  1. Jamie Maccaroni says:

    Thinking of you, Dee!

  2. Kathy Smith says:

    Dee, it saddens me that you are having to go through this. I am so glad your dad is able to be there with you and the girls. My regret is that I can’t be there too.

    Remember, God will be with you through all of this. When you feel you don’t have the strength lean om Him and believe He will carry you through. I believe in His healing power and I believe in you! Mom

    believe in you.

  3. Liz says:

    Don, I don’t think anyone could have say it better than Kathy. My prayers are continual – for strength, comfort, and healing. Thanks for the update for those of us who are far. Much love coming your way. -Liz

  4. Monica Laramore says:

    Thoughts r with u and your family Dee. U can do this!!!

  5. Michael Moodoyan says:

    Hey Dee, it’s Mike.
    Julie and I and the kids are thinking of you and praying for you brother.

  6. Pat Wood says:

    Dee … so sorry to hear you going through this and So glad your dad is with you !!!! You are tough and have lots of family and friends praying for you and thinking of you… If there is anything we can do for you from this end .. please let us know !! Stay strong !! Love ya… Uncle David & Pat

  7. Peggy Sue Quinton says:

    May God lay his healing hands upon you. I will keep you in my prayers, as well as your family and your doctors…Your Uncle David and Pat are friends of mine. God be with you…
    Peggy Sue Quinton

  8. Brad & Jo Mantz says:

    Dee,

    Even in your pain, God is there; in chemo, God is there; in the days following chemo and you are trying to hold on, reach out because God is there. Brad and I are praying for you and know that God is there for you.

  9. I love you, Deebo. Keep that UFC spirit. You are bigger than this monster called cancer. Fight like hell. Your big sis, Jennifer ❤


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