Sunday, September 8, 2013

update

The plot is thickening over here.  This week I slept in Florida on Tuesday night, Utah Wednesday night and Washington Thursday night.  I had some appointments in Seattle about a trial they are doing up there that I qualify for.  The tumor in my armpit is growing rapidly and giving me some major grief.  The plan right now is to remove that tumor in Seattle on the 16th.  Possibly continue on the PD-1 trial in Florida (wish I would have known I could do surgery on this thing while I was on the trial) while we wait to see if Seattle can grow enough of my cancer fighting T-cells from the tumor they remove.  In 5 weeks they would know if the cells were growing enough (50% chance of this) to continue on with the trial.  If we get to continue, the trial is 7 days of chemo to wipe out the immune system.  Then they infuse your new boosted immune system (the cells they grew that were attacking the tumor).  And then they follow it up in the ICU with one week of IL-2 (remember those days?).

This is something I have wanted to try.  They think 50% of patients get responses.  That's not long term, just any kind of response.  I don't know the long term data.  I have read some encouraging stories.  I have also read some discouraging accounts.  I'm not sure what to think, but I'm running out of options, and I need to address this tumor that is becoming unbearable.

I hesitate even posting plans when they are temporary, but I know everyone is curious.  Just be flexible, because there are a lot of variables that don't sound fun to type up, and may change the game plan.  But this is what we are moving forward with for now.

I am still laughing about the late night conversation I had with the kids after I had flown home from Seattle.  I was explaining that trial and mentioned that I would lose my hair.  "No!!!"  Luke's face said, horrified.  "No mom!  Don't do it!!!"  Luke is kind of into his hair.  He loves to have it long, curly at the bottom, bangs swept to the side.  And the smell of hairspray is one of his favorites.  "It's no big deal.  I do not care about my hair."  I say in absolute truth, although the eyebrow/eyelash thing will be a little harder to swallow.  "Besides, it will be fun!  When moms with cancer have to shave their hair, in solidarity all the boys in the family shave theirs at the same time!"  That did it.  Luke's arms flung up to cover his head.  As he ducked under them, audible weeping was heard.  "NO!!!  I won't do it!  I can't!!!"

So I guess we won't all be bald.  Josh at least has kindly agreed to join me.

The issue I am having is that the surgery will be quite major at this point.  The surgeon would expect lymphedema in that arm with the amount of lymph node involvement that seems apparent. When I lost my leg to lymphedema (that is dramatic of course, what I mean is that I have to cover it to hide the compression stocking that I have to wear all the time) I just had to be proud of my arms.  Slender and long.  I almost said no to the surgery because of this risk, but it would be a little like Luke's reaction.  And I'm bigger than that.  Right?  I guess we are all a little vain.

I was running a fever in Seattle, and have started night sweats again this weekend.  Combined with the increasing pain, and hours on the phone with hospitals and insurance companies, I am feeling like a cancer patient again.  Josh is worried.  I am grumpy.

All this under the turquoise September sky, and our bellies full of peaches, and the mountains all around us changing colors.  It's fall!  Cancer can't possibly be our reality.

Sorry about this graphic image.  My beautiful armpit!  This tumor seems to be growing every day.  Yikes!!










18 comments:

  1. Alisa thanks for posting you are right we think about you and wonder what is happening all the time. when I had my breast off it was ten years ago when they still scooped all your lymph nodes out instead of the sentinel node they do now,anyway I went to a massage therapist at the hospital who showed me some easy massage techniques to help the lymph flow in a different direction and not pool up. I did the excersises for a couple of years and havent since and still havent had lymphedema thank goodness. Just thought I would mention this to you. Please now that we are praying for you and you are an inspiration love Suzanne Campbell

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  2. just a reader that is praying for you and your beautiful family. you are so incredibly strong and your boys are lucky to have such a wonderful role model. all the best to you!

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  3. You are always, always in our thoughts and prayers. We're praying you can come up with the very best treatment plan possible!

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  4. Thanks for being willing to keep us all up to date via this blog. I'm sure it's not fun to rehash everything for everyone. It looks like Josh will be having a few more sympathizers with the hair thing. I think you'll be the most beautiful bald person ever. You don't need hair (like the rest of us) to distract from the natural beauty of your face. Love you Alisa!

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  5. Bald isn't bad! It is much easier ;)! Hair grows fast. Thank you for the update. Regardless of the change of your plans, I pray for you everyday. You have the most beautiful armpits I've ever seen ;).

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  6. Josh also offered to break his neck to show sympathy. He's good like that. I told him not to worry about it. We hope everything works out for you and you have a successful surgery!

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  7. As painful as it is for you to write these I am so amazed at your strength. Thanks for always being so honest about it all. I would be freaking out constantly. This life is truly one for trials and a test of our faith. Stay stronger for a "Warrior" never gives up and has an army behind them. Love ya.

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  8. I totally noticed the great definition in your shoulders in that picture. I was all, "does she work out?"

    Also, you were in my thoughts last night as I drifted to sleep. 'Alisa!' My brain screamed. 'You haven't checked in on Alisa, and the last time you saw her was too long ago. I'll be SO MAD if that big C wins.'

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  9. Keeping all of you in my prayers

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  10. Thanks for the updated information. I am in ahh of your arms, dang nice arms. You continue to inspire me, I know just from my own battles (no comparison) that you sure have given it your all, I love the hair reaction, what a cutie! IF anyone can pull bald and beautiful it is YOU. Prayers continue to be with you and your family.

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  11. Love you, Alisa. Thinking about you here.

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  12. I have been wondering about that armpit tumor, so glad your getting it removed so you can be pain free. You'll do great, you're a pro at this stuff. You always exude such strength, courage and hope. Totally inspiring! And hair, it's overrated... except, of course, on cute little boys :).

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  13. Wow, I can't believe everything you have going on, not to mention regular life. We are thinking about and praying for you many many times a day.

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  14. Alisa,

    I think of you everyday practically and you are ALWAYS in my prayers. I just wanted you to know that. I still believe in miracles and I still believe that you will have your "second" miracle. Keep on keepin' on!

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  15. You have so much more than so many of us to be vain about:) Your beautiful hair, your beautiful arms, your beautiful legs all just help house the truly beautiful you. We are in on the fast!

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  16. I think about you daily! I'm so glad you have an update! Your armpits are some of the sexiest I've ever seen ;) I admire so much about you Alisa, I think you're incredible. Always praying, always hopeful! Sending hugs and strength and health and courage! <3

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  17. Alisa, you are amazing. I think of you often. Actually, bald wasn't that bad - and you look awesome in hats! The eyelashes were the roughest (I lost mine twice) but a little dark eyeliner and you're set! I, of course, know it's more than that but I also know how determined you are. You are in our prayers nightly! Love ya~

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