Tuesday, March 15, 2011


The Dr. today, the melanoma specialist of Utah, agrees with the first surgeon: Try the vaccine injections first.

I can't help but think, Really? This is it? This is the best you can give me? A trial? Am I down to that? Is this as good as anything you got?

I don't know what I wanted to hear, honestly. I think I wanted someone to say "I see this all the time, this is exactly what we do for it, and this is the kind of response we have for it, and you are going to be okay." I never hear that. Not like they are saying I am terminal, but they just make it sound so serious. Dang it!

He said the chemo to the leg (ili) would not work because my tumor is too high up on the thigh. He said that might have been an option if I just had the first metastasis (on the knee) to deal with. So we rule that out. That is okay, I've never been 100% sure on that one.

Biochemo he says would be better with more disease to measure it by. It is a very toxic treatment for a little response rate (which is what everything has at this point I guess). But in some people it provides a durable cure. So that is for sure an option down the road. I thought now too, but maybe I should try something easier.

The vaccine is promising in a small percentage of cases. And that is the case for all my options. And that is why I'm a case right now. It makes sense to these guys to try something that is easier on the body, because I could be one of those great responders. If it works on the tumor it is likely providing a systemic response that is working on any other cancer cells that may be in the body. They inject the tumor (guided by ultrasound) every 2 weeks and see if it's shrinking. Scans every 3 months. Take it out if its not responding or growing too fast.

"How long do we just wait to see if it's working?" "I don't know, what if you saw that tumor shrink within a couple treatments?"

I'm not sure I'm in a frame of mind to decide what is best. This is what the specialists think is best. I need to trust them and go for it. I am filling out the paper work tomorrow and will make sure that is the right decision before we start (hopefully the end of next week). But living with a tumor? That is going to hard.

Why is this stressing me out? A wrong decision could mean pain. Not for me, but for everyone I love. The more they love me, the more they get hurt. Think about hurting your husband, parents, kids, siblings, all your friends. The weight so heavy. I know no one would blame me for anything but they watch me suffer and I watch them suffer. All of them.

That hurts to even write it, but that is what I feel like.

In response to the "how bad is this" question I asked the Dr. today: "I can't give you exact numbers. I can tell you if we did nothing at all you would die of melanoma. I can't tell you if that would be in three months or three years." I'm not even including the most depressing quote.

On the brighter side, let me tell you all the good things the Dr. had to say:

*"I've seen people come back that haven't had melanoma for 30 years."

*"Our goal is to cure you of melanoma so you are around to see your kids get married and all that."

*"I have seen some very dramatic responses with this trial."

*"There are a certain percentage of patients that have it come back in their extremities and it doesn't go anywhere. I've seen it a number of times."

In response to my statement "It sounds so hopeless." "It's not hopeless. One thing you have to remember about melanoma is it's so tied into the immune system that I have seen a number of times patients go into spontaneous remission just on their own. Their body recognizes it and kills it. It's a difficult situation, but not hopeless."

But when I try to get numbers out of him on any of this he will not tell. Maybe they don't matter. I could definitely be one of the some that he is talking about.

How am I today? I am not okay. I have to be strong around the kids. I have to be mom around the kids. I have to put on a birthday party and smile all night. But when they go to bed and it's me and Josh I just want to cry.

A fire truck might have even pulled up to the house today. Just that kind of day. Excited for tomorrow. And it feels so much like spring!


  1. I'm reading this at 4:00 int he morning and it makes me feel hopeful. Is it just the early hour? I say just do what that Dr. thinks is best. He seems to be leveling with you. Go for it Alisa, see how the tumor reacts.
    It is living with the uncertainty that is so hard. If you can get to the point where you don't worry about the outcome - you do your best and let what comes come, there might be some rest for your mind - good luck with that.
    Love truly opens the heart to pain but the love and joy can only be as deep as the pain. Love is worth it. Let those hearts feel - it is how they expand.

  2. I feel very good about the trial option, and know that whatever you decide will be supported by the faith and prayers of lots of people, of every age, related or not so related, close in proximity or very far away. I know you will be all right. I know it. Love, Mom

  3. Oh man-where does this fit on dad's chart? Since it's a trial does it mean that you could get a placebo? I can't help but feel like you are going to be the responder, but I can understand the anxiety about letting a tumor wait out the treatment. We will amp the prayers--surely God understands the importance of moms.

  4. Crying, but hoping right with you. Thanks for being so honest and letting us into your heart.

  5. I have a heart full of emotions on SO many levels and the one thing that I have had to focus on life with certain trials I have dealt with lately is HOPE- Alisa, if you only new just how inspirational you are to so many of us (though I am sure you don't want to be that person). I have SO much admiration for you and Josh- you both are such WONDERFUL examples through the roughest roads. Our prayers have continued in your behalf and as well as with your nephew. Wow, is really all I can say and PLEASE PLEASE know you have such a great big squad cheering you on, I know how hard it is to watch your loved one's suffer through: I think it's harder to watch them in times even when in reality it's you going through it, I often think that's how the Lord feels as well when he see's his kids (all of them) hurt or sad etc. Keep the Faith and Thanks again for sharing your story with us.

  6. Alisa,
    We love you and continue to pray for you by name each night! I can't imagine the information overload you had yesterday and how it must be to process it all. Hopefully, with time it will become easier. I am glad you cried when the boys were in bed. You need to do that. You don't always have to be the strong one! I would love to help out when you have dr. appts. The boys can always come to my house after school. Please let me help. I planted hollyhocks and dahlia bulbs in your honor yesterday in my garden! Spring and all its beauty will be here to stay soon!
    Love, Lisa

  7. Not hopeless, we ALL hope you get better. Sonj is right- Surely God understands the importance of Mothers, and Aunties, and Sisters!

    pps. I love you too!

    We pray every night for Steven and his family and Alisa's family. May comfort be with you and Josh and those precious boys in the coming months.

  8. I liked the spoon full of sugar post better:) Looks like you guys had a great time in beautiful Hawaii.

    I wish I could be there to help with the boys and anything else, though I know you have so many around you there. You are an amazing person Alisa and so strong. We, too, are praying for you, Josh, and the boys continually. I hope you can come escape to the east coast sometime soon! May the Lord be with you, to comfort and strengthen you in the days to come. You can beat this!

  9. So many feelings as I read your blog posts. I know that you understand love and what is in all of our hearts. We have so much support through our suffering, and yet, so much of it can not be shared. We think of you constantly and wish that we could take some of that personal suffering from you. That's why it's so hard to watch your family and friends. You can see their eargerness to relieve your burdens and inability to do so. That's when the Savior steps in. He can do what none of us can. I love you!

  10. To add to Sonja and Lins boys comments, surely God understands the importance of Mother's, Aunties, sisters, and best friends! But really. The last thing all of us wanting you to worry about is all of us. You take care of you and your little ones and your not-so-little Josh. They'll keep taking care of you, and we'll keep taking care of you, and we'll take care of each other.

    I'm all for the vaccine thinga majig. You've got your health, your youth, and your LOOKS, in your favor. Love you more than you'll ever know.

  11. I vote for the vaccine to work.

    I found a scripture that I love in connection with all of this you/steven/cancer business: "your families ... are in mine hands, and I will do with them as seemeth me good; for in me there is all power." (D&C 100:1) I thought about it of course in context of you and Steven, but the same applies to those of us who are close to and love you. He'll take care of all of us.

  12. I hadn't though much about the aspect of worrying about everyone else when you're the sick one, but I can totally see that now. But...with that said, you concentrate on getting better. That's the most important thing.

    I think trusting the doctors is best.

    Love you.

  13. OH Alisa! I wish it wasn't so hard for you. For anyone that loves you. Not an easy situation and I hadn't thought of how your thinking of others would affect you too. You are amazing. I love you and will pray for you and your sweet family. Don't lose hope!

  14. Alisa, I have been following your blog and am thinking about you and praying for you. You have always been an example to me, ever since HS days when I saw you through the eyes of "your little brother's friend". You are an incredible woman, strong, and amazing. I hope you know this, I also hope you take those opportunities of Josh time and exert those tears. You can and should do it with his constant support in those quiet times at night. Continuing prayers and love. Thank you for being so open and sharing with us what is going on.