Friday, January 9, 2015

So today we scheduled an infusion on PD-1 for the 15th (the earliest they could get me in).  I am getting appointments with a surgeon and an interventional radiologist.  The surgeons in the tumor board thought that because of the risks of the surgery if there is anything I can do to shrink it, that would be preferred.  The risks seem to be the same as they were before I started BRAF when I talked to a few of them.  I am worried if it continues to grow that the surgery would get harder.  They thought it would be the same surgery in the case that it keeps growing and we don't get a response from the PD-1.

One idea they had is to try and de-bulk the tumor with radio-frequency ablation.  We are not sure I'm a candidate for that, but we could possibly do that while I'm on PD-1, or we can do the surgery after we start the PD-1 if we need to.  I will talk to the two doctors and we can see what can be done.

Today has been a painful day.  I am going to start taking my pain killers around the clock so I don't let the pain get out of control like it did this morning.  Things get pretty hopeless when your insides are screaming.  I've had pain before, but it's always been easily controlled.   This seems to be something different.  It is terrifying to take Percocet and not be able to tell a difference in the pain.  We have a prescription for a long acting pain killer, and it really might come to that.

What keeps me going today is a quote from my friend Cory's Facebook update.  January 1st he completed a 72 hour race.  His goal was to get to 200 miles (can you even imagine?).  He checked into Facebook at one point, "Currently at mile 174.  My leg muscles are in knots unlike anything I've experienced before (duh) and they don't want to unkink.  But it's down the one last marathon."  

Down to one last marathon.

I'm ready to finish this fight.


  1. My text I just sent was so outdated :). Hoping they could just get in there and remove it all. Praying they will do that after they shrink it first. The pain sounds horrific in so many ways. I'm so sorry my dear, sweet friend. I feel so heartbroken, but hopeful. One last marathon... you were always the best at those long distances anyway. No giving up now. Praying extra, extra, extra. So much love to you and all those wonderful boys in your life.

  2. Was the pd1 the one that got rid if all the brain tumors? If so, that's the miracle drug for you!!!

  3. You're a fighter! I'm sorry about the pain; both the physical kind and the emotional kind. I can't even begin to imagine what goes on inside your head and heart but I sure love you and whether you think you do or don't, you inspire me to be more graceful in my own trials. Thank you...with love!! Kath

  4. I love the grit. You are so tough. Hang in there, Alisa. This tumor's days are numbered.

  5. Sunday, 11 January 2015 -- Cory asked us ("us" being the wonderful world of social media where a lot of people follow each other's miles and smiles, hours and horrors, days, delays, and dallies--or something like that) to drop in and offer some words of love and encouragement.

    Encouragement has four sections in my great big book of synomyms--some of the offerings: buoying, chirking, persuading, abetting, offering hope, countenancing, enflaming, goading... and so on. I decided you need chirking. Bouying seems like something you would do for someone slowly sinking out of sight and I don't even know if you can swim or why you would be in the water at this time of the year. Persuading might involve arguing when we have not even met in real life. Abetting, maybe you would aid and abet; I don't know. As the options were analyzed; pluses and minuses evaluated; colors of the rainbow counted, clouds rearranged, and hippopotami weighed (Do you know why you can't get a hippotami on a bus? Because one hippopotami is two hippopotamus.) I decided on chirking -- you need chirking.

    chirk -- chirked, chirking, chirks [ to make of become cheerful. Used with 'up']

    [Middle English: chirken, to chirp, chirrup, from Old English: cearcian, to chatter... and other almost nonsensical stuff because my degree is in mathematics, not English]

    Are you cheered up yet? I could send you a picture of the Seattle Seahawks logo. It cheers up people in Washington; not so much if you are in Texas.

    I could send you a pineapple upside-down cake recipe. It only works if you have a cast iron skillet.

    It is dark now and I need to go make a sandwich. I hope you are feeling better. I hope you feel better each day for many days to come. I really do.

    Take care,

    John M.

  6. Alisa, I am a fb friend of Cory's and heard of your fight through him. I am amazed at what a courageous and strong woman you are (I read your blog posts)! I am a fervent believer in the power of prayer and will be praying for your strength, healing and perseverance and for wisdom for those in charge of your treatment. A lot of people run a race to see who is fastest. God Bless.
    Jay K.
    "I run to see who has the most guts, who can punish himself into exhausting pace, and then at the end, punish himself even more."
    Steve Prefontaine

  7. I'm a friend of Corys and have been reading your blog for over a year. You are so strong. I've really admired your honesty and sharing your story. You are a great example of to us all. Keep fighting and I'll be praying you you and your family.

  8. Alisa, You are strong and beautiful inside and out. God blessed your family with the light that only you can give.

  9. I love you!!! Fight the fight!

  10. Love you Alisa! We'll pray for extra strength for you to finish this marathon!

  11. Alisa, You always inspire and teach me with every post that you write. You and your beautiful family are in our prayers.

  12. I hope you know how very much you are loved!! And I am so sorry to hear of all the pain and struggles you have been through. All our love, the shepherd family