Thursday, March 19, 2015

This last week we had some dramatic changes to the norm.  Thursday I woke up and didn't need to barf.  I think it is the first day since coming home from the hospital that I didn't run into the bathroom as soon as I opened my eyes.  In fact, I didn't throw up once that day.  And then it happened again Friday.  Saturday I woke up feeling good just the same.  Man were we feeling confident.  So confident I ate a couple pieces of pizza Saturday night, and really regretted it.

We are back to barfing, but not as consistently.  We have our bad days, but can finally mix it in with some good ones.

It's hard to make sense of it all, but I'm doing good and bad.  It's difficult to make peace with your mix sometimes.  So far for me, I have been able to do this.  I pray it can continue.

One of the really good things that's happening right now all around is the valley dressed in Spring.  Another is the easy kids I've been blessed with (we now have a 14 year old in the house, which has had it's difficult moments).  The best thing I have is of course Josh.

One of the bad things that is really getting me down is the stomach issues I mentioned above.  I went the pain Dr. today to get my pain pump checked out and she said these issues are not due to the pain medicine because the pain medicine is just going to the spinal chord.  This was pretty discouraging.  I guess I hoped these were related and as soon as we could get rid of the pain meds the nausea would disappear.  Get rid of the pain pump?  They wouldn't even decrease the dose, even though I feel no pain ever whatsoever.  She says I'm not in pain because of the pump, and we know I had tons of pain, so why would we mess with things?

Another bummer is that we couldn't pull the feeding tube, we just exchanged it for a G tube and ordered a longer J tube should the need arise we can try, try again.  I think it was the right decision.  I am having a hard time keeping weight on and in the case of a couple days I couldn't keep anything down it would come in handy for feedings and medicine.  But a tube sticking out of your stomach is source of soreness and maintenance that is just no fun.

After losing 15 lbs, I think I'm down to 10.  It has been constant diligence to get that 5 lbs. on.  I have an appetite problem.  I just do not feel up to eating  much.  It looks good, but I just can't stomach a bunch of really good food.  I eat a little at a time and even then, there are no guarantees it will stick around.

I also take good long naps, and find myself falling asleep when I sit or lay down.

Although being sick is no fun, it is the worry of why I'm sick that has me down more than the actual illness.  I certainly am starting to look like a cancer patient.  None of my clothes fit in the right places.  My hair will probably need to be shaved (I just keep hoping it's just thinning, and because it's short, shedding is not too annoying) which will complete the look.

Friday I get another dose of antiPD-1.  Let us hope and pray that it is making a difference.  I'm not sure when I get scanned again, I see the doctor next week and I can find out then.  Thanks for your continued hope and prayers.  They mean the world to my little family.                      

23 comments:

  1. And you mean the world to our little family.

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  2. I am gearing up for a good dream about you tonight... That you'll feel better tomorrow. You know how I am with dreams. I love you.

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  3. So good to hear from you! It's also good that you are having GOOD days! I'm not surprised, you are an incredible fighter. Praying for you as always!

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  4. I think of you every single day. Constantly wondering how you are in that moment. I just think the world of you Alisa! Xoxo

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  5. I'm holding onto the hope that you're sick because of an awesome immune response! And you're the prettiest cancer patient I've ever seen.

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  6. It is SO great to hear you've had some good days! I hope they come more frequently and then stick around! Praying for you and your cute family every day.

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  7. I thought you looked so good this weekend and you had more stamina for shopping than I did! I'm sorry every day hasn't been as good. I'm thinking we need to get Uncle Rob to come and cook up some calories for you. I love you Alisa!

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  8. You are amazing! You are a wonderful example of never giving up. We love you and you are in our family's prayers multiple times a day!!

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  9. always thinking of you and you are amazing!!! such a fighter and example!!!

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  10. It is amazing how you make peace with the good and bad and inspire us all to do the same. We miss you already and hope lots of good days are ahead.

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  11. Hope you get your appetite back soon. Glad you can appreciate the nice weather.

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  12. Alisa, your father attended our recent Stake Conference and attended to the Lord's business. At one of the meetings, he spoke briefly, but tenderly and lovingly about your and your struggles.

    I asked if he would share your name, which he did. I put your family names on the Prayer Roll of the Oakland Temple, where my wife and I serve. Your names will remain there, prayed for each week.

    I am in awe of your strength, beauty and testimony! You are AMAZING!! I just can't say it well enough.... you are an inspiration and a wonder. One of Father's finest daughters, and He smiles as He considers your strength. Thank you for all you do for others as you go through this journey.

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  13. Prayers continue in your behalf and behalf of your sweet family.

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  14. Alisa, I try to get a report from your mother or father often. You are always on my mind and in my prayers. I would love to share some of my padding with you so that your clothes fit in all the right places. Thanks for being such a great example to all of us, even the old ones, of courage, strength and faith. I love you.

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  15. Alisa, I have personally prayed for you and your family for the past 7 years. Every time I have read your blog I have walked away feeling uplifted and so thankful that I know you! I have to share an experience that occurred in the last couple weeks. Our Bishop came home from a business trip to SLC and he met the Farner family on his return flight. He and Brother Farner discussed some things, one of which that he had a sister in law who has cancer. He asked our ward family to pray for the Farner family and their Sister. The Fishers 2nd ward in Indiana is praying for you and your extended family!! How amazingly humbling it is to realize just how connected we all are to each other! Love you!

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    1. Steph, thank you for your prayers, I am deeply touched by everyone who is so good to my big sister Alisa.

      Love,
      AnneMarie Farner

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  16. Thanks for keeping us posted, Alisa. We're praying for you, as always.

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  17. We love you Alisa. You and your family are always in our prayers.

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    1. I sent a post that did not show up and then the follow-up showed up and looked strange without the original post. So I removed the follow up.

      I will write it up again and post it.

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  20. It's been so good to see you out and about! I'm praying for you! Hang in there!

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