Saturday, September 21, 2013

recovery

I am feeling good!  Movement is tricky, but we can work on that slowly.  There is a drain sticking out of my side that is cramping my style, but we should be able to pull that out next week.

The doctor said the operation went as good as it could have.  Said the tumor was about the size of a fist.  It had not invaded the muscle or major blood vessels, so everything is intact.  He again guessed I would develop lympedema, but thought the tumor would have caused that soon enough if I hadn't done the surgery.  Strangely the only real pain and discomfort I'm in now is not from the surgical site, but from the swelling in my arm.  Hoping it is temporary, but it is very suspicious of lymphedema.  I am pretty bummed about it (maybe extremely depressed for small moments), but I have Josh telling me it doesn't matter at all, and asking me if I'm alive in 5 years if I will really be complaining about a swollen arm?  Good point. 

We will see how things shake out this week, and get serious about getting it under control if it doesn't improve.  But do you ever have those strange sensations as you are drifting off to sleep of one of your limbs or your head swelling quickly (tell me I'm not the only one)?  I woke up one morning to the very thing, only it was not at all a dream.  I did not recognize my arm, and was sufficiently creeped out.  Josh said it looked like everyone else in America's arm, but not mine.  What a sweetheart. 

You know those other dreams you have about waking up from anesthesia and someone telling you something went wrong?  I kind of lived that one too when I was in recovery and Josh told me my Florida Dr. called to say I won't be able to come back for his trial.  He found out that signing a consent for another trial disqualified me for his.  It's a very long story, last week was a disaster trying to figure it all out.  I cancelled my surgery on Thursday because of the confusion.  But on Friday we got the okay for surgery in Seattle from the Florida Dr.  Monday during surgery they found out from the drug company it would not be okay like we thought.

I was not devastated, as I feel like I have gotten all the benefit I am going to get from the PD-1.  And it sounds SO nice to stay home for a while.  So, so, so nice.  I just wish we would have been able to factor that into the decision that was made.  Most likely I will be doing nothing for 4 weeks to see if they can get enough of my T-cells to grow in Seattle.  Like I said, there is a 50% chance they will get enough cells.  If some other tumor starts to bug me in the meantime then we may have to alter our plans.  And then of course if they can't get my cells to grow I will pursue other options. 

I haven't even told my Seattle and Utah doctors about the mix-up yet.  I don't know if I can handle one more conversation about it.  I spent a whole week pestering all three of my doctors last week, only to make a decision that doesn't work anymore.  It is very confusing to have three oncologists in three states.  They are busy people and have been very kind to help me form a plan.  This was the one that we all liked. 

There is a certain unbecoming phrase that has passed through my mind (and out of my lips) more than once this week.  It includes two swear words and is absolutely all encompassing and has brought me much relief.  Thank goodness for cuss words when you really, really need them.  And also thank goodness I do not swear regularly, or they wouldn't pack enough punch.

But all around we are doing just fine.  Now that I am needy again (the surgeon called me out on my independence the first meeting we had, is it that obvious?  Said I must take it easy, and let others do my chores for me as hard as it may be),  I am reminded how kind people are.  Our house is spotless.  Our fridge is full of good food.  My family takes care of my kids.  My friends come to check up on me.  Prayers have been said around the country for me.  We are really the most spoiled family on the planet.

I have spent a lot of time in bed trying to keep my arm elevated/wrapped/massaged this week, and following the Dr.'s orders.  I have been digging into melanoma blogs, if you are wondering what I've been doing (haven't done this for a long, long time).  Trying to find some others who have done TIL trials or other successful treatments at stage IV.  ***Spoiler Alert!!!***  They all die.  Well, okay.  Not all (Christina).  Most.  And the thing is, the way blogs are set up, you always know their end from the beginning.  What a strange way to read a person's life.  Backwards.  But not upside down.  It almost makes it all make sense. 

I am being reminded of some things while I read.  I have got to make an effort to write down what is happening along the way, because I have learned so much from these people's experiences.  These are people at the end of their lives, reading their own stories backwards, and have things figured out.   It's fascinating how everyone comes to the same conclusions.  Beautiful, simple, and inspiring conclusions.  The same ones that are drawn out of all the great books, and all the great minds.  They are at the end of every lovely story.  And every lovely life.  The moral of the story is always love in one form or another and it's so individual and universal-it almost takes your breath away. 

But no need to stop breathing here.  Not yet.  I have a lot of confidence that we have more successes coming our way.  I am not in my final chapter.  Kind of up in the air as to where we are headed next, but I'm not scared.  I am learning to trust that my story is being watched over and my steps guided.

32 comments:

  1. Yay!! Love this post...so positive, so inspirational, so Alisa! I'm so happy you're surgery went well. I'm sorry for the larger arm, but, no one cares about your arm--you are a walking, talking miracle! You're right, this isn't the final chapter, there is more to come. You're amazing! Prayers still coming everyday! Love the Linton's!!

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    1. Right back to you Jen! You make me stronger!

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  2. What a great post! I'm so glad you're letting people take of you! I so agree on the "love" thing. Love is all there really is...the rest is just illusion.

    Don't worry...I have fat arms, and I've learned to live with it. ;-)

    Love you!

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    1. Haha! Your arms are not fat Jill. Love you too!

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  3. Glad to hear that you are doing well! And - those drains do suck - but, thankfully, they are short lived! Lymphedema - HA - laugh in it's face... not fun but doable. There are now "fashion sleeves" available. This post is wonderful and uplifting! You write so well. Thank you for sharing your thoughts with all of us. You are amazing~

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    1. Doable for sure. I am looking forward to those fashion sleeves. Tattoo arms, no? Thanks Jeri!

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  4. Can I guess the swear words? Is there a prize?

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    1. Hint: It does not include the very worst word.

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  5. Ran into Josh today at church and didn't even realized we meet in the same building DUH! Great news! Thanks for sharing. If the swelling in your arm does not go down you can learn to do 1 arm push ups and enhance the other arm with muscles. Sure love your post. I hope you realize how AMAZING you are. Your trail is a strength and testimony to us all that GOD lives and know us. He wants us to know him and love those around us as he loves us. Glad you are spoiled. Will call to schedule a batch of curry this week. Spices should be really good for your arm. Just saying.

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    1. Your curry made my day! One arm push ups? Only an Olympian would suggest that. I will get your pictures to you this week. You are beautiful!

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  6. Wow! You are amazing! Thanks for taking so muh time to update and express your thoughts and feeling! Love you!

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  7. I thought I was the only one with those weird balloon limb dreams. I've never known how to describe them to people. Let us know if you need anything.

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    1. You know I will. :) Aren't you glad you live right by us??

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  8. I get balloon limb dreams, too, Alisa. And I am so inspired by you. Thanks for all you do for me.

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  9. You are truly an inspiration Alisa!! Keep up the good fight, sending prayers and good thoughts your way.

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  10. Wow, Alisa, I loved reading this post, especially since I show slow response to my own melanoma tumors through radiation. I think surgery has to be an option for me, too. So happy all went well (and continues to go well) for you. Heal quickly! Thank you for your inspirational words on my blog. They meant so much to me. Funny how I never thought about our blogs as "living backwards". It's true. The learning/growing process is so clear when you read this way. I'm praying for you, sister-friend. Let's keep fighting! I haven't written my final chapter yet either!

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    1. We have years and years of blogging to do! Good luck Lisa!

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  11. Ah I love you Alisa. Thanks for sharing your thoughts. xoxox

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  12. Sorry the response to anti-PD1 was not what you had hoped. However, Weber has told me repeatedly of a patient he had in the first arm of our same trial...but obviously at my dose (1mg/kg) rather than your higher one...who progressed at the first three month scan interval and was removed from the trial. However, on rescanning...so as to make plans for a new treatment...regression occurred and continued apparently to this day with NO additional treatment. Apart from that...hope recovery from surgery goes well and the swelling you may be experiencing is only temporary as new lymph channels for drainage develop and that TIL remains an option is that is what you choose. Finally, though...spoiler alert!....dead is what we will ALL be one day...there are more than a few of us Stage IV bloggers who ain't dead yet!!!
    Wishing you the best.

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    1. Dr. Weber told me the same story, wouldn't that be amazing? And you are so right, there are many survivors (you are a poster child of anti-PD1) that I should have included. You guys are a HUGE part of the bucket of hope I simply must have to keep going. Thank you for that. Every day, thank you!

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  13. "beautiful, simple and inspiring conclusions"
    Love you!

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  14. I too was discouraged by reading some melanoma TIL therapy blogs...until I was able to get in contact with several people (who don't blog) but are long-term stage 4 mel survivors because of TIL therapy at NIH and MD Anderson. No guarantee for anyone, of course, but hope continues! Hang in there :)

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    1. Hope continues...I love that! I read through your blog this last week. Very inspiring. I wish you guys all the best.

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  15. How inspiring! Alisa, you help us all remember the precious gift of every day and that love is really why we are here. We are loving you and thinking of you every day.

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    1. Thanks so much Aunt Rosie! You are the best.

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  16. You are simply amazing and inspiring. I cried reading this post, mostly happy tears, but also tears of empathy because I know what you're experiencing and feeling. I am happy and grateful that you are still fighting though, and not giving up. I know you are experiencing lots of down moments (which is normal), but don't dwell on them and always keep things in perspective (which you seem to be doing). You are so blessed!

    God has and will continue to answer your prayers, provide miracles, and increase your faith and strength. And remember, there are LOTS of Stage IV survivors out there just like me, you just don't read about them on blogs because they are living their lives! I can name several that I personally know--Sue Lescure (6 years), Tina Rosenthal (6 years), Kari Worth (10 years), Carol Shelton (12 years, AMAZING story), Erick Davis (12 years, another amazing story), Bob Hefferman (4 years?, did the TIL treatment at NIH and doing well still!), Michelle Medford (8 years), the list goes on! All of them Stage IV and think, some of them 10+ years ago when the options were very limited!

    Knowing all of these people gave me so much hope that if they could do it, so could I! Hold onto that hope and know that melanoma doesn't have to be a death sentence. Plenty of people are doing it and living normal lives again.

    I have yet to meet you in person, but I'm hoping we can still meet someday! I love reading your blog and I will always continue to pray for you! XOXO

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    1. You are not the only one, right? Thanks for the reminder. These stories for sure keep me strong as well. Thank you, thank you, thank you!!!

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