Stable...sort of

Well, here I am again...waiting too long to blog with too many things to say.  Last time I left off I was stopping my toxic chemo and getting ready to start different chemo.  I was very skeptical thinking it wouldn't be as effective as the chemo I was on but there was no way I could stay on that Abraxane for one more dose.
So October 17th I had a CT of my chest and started Carboplatin and Gemcitabine October 18th.  For all the toxicities the Abraxane caused, at least it was doing some good at killing cancer - my lung disease had shrunk which was great considering I was having a need for Oxygen still - I was worried my lungs would be worse.  The culprit was probably the continuing pleural effusions that will not go away or decrease in volume which has been frustrating.  The CT also showed more spread in my bones which isn't as concerning as in the organs but for some reason we can't find any chemo that will stop it from spreading up my spine. Grrr....
So far I have had 3 full rounds of the new combo and just started my 4th round yesterday.  This chemo, while it still has its challenges, seems to be less toxic than the last.  It does make me much more nauseated and I get tired easy, but within 2 weeks of starting it I was able to stop using the Oxygen which has been nice.  It is also much harder for my bone marrow to recover so I have had a couple of dose reductions, a few blood transfusions, delayed chemo due to low counts, and lots of bruises and petechiae. I was started on a new injection called Procrit - it helps stimulate my body to make more red blood cells in the hopes that I can avoid some blood transfusions.  I love that when I looked up side effects on the Procrit website it says "Your tumor may grow faster and you may die sooner if you choose to take Procrit."  That's always good to know - I'm glad I'm taking it. :)

The super yucky "lemonade" contrast for my PET scan.  It was all I could do to keep it down.

 I had a full body PET scan this week to see how things were going inside this whole body of mine.  Dr. Litton said there is a small area in my left lung where the disease has progressed - which sucked, more bone spread - which sucked, but everything else was "stable".  He was happy that there was still no spread to my liver, lymph nodes or brain, which didn't suck.  I don't know how I feel about this scan - it's frustrating and hard to process when there are areas the cancer continues to spread.  I suppose I need to focus on the good knowing my other organs are still clear which means my condition won't deteriorate faster for now. I just wanted so badly to hear those 3 important initials NED - which means "no evidence of disease" but realize I won't ever hear them in this lifetime.  Of course I let Dr. Litton know I wanted him to say that - he let me know that he wanted to be able to say it too.  Several months ago I asked him if he could make an inhaled chemo that would go in and kill all the cancer cells.  I told him we could name it the Littonizer - he would be rich and famous if he invented it....then I could make him a shirt that said "I invented the Littonizer..YOU'RE WELCOME!!  He laughed and thought it was funny, but for many reasons it wouldn't happen.  I tease him all the time at my appointments asking if he has invented it yet.  For part of his Christmas present I took an expired inhaler we had at home and put vinyl lettering on it that said "The Littonizer" with a cancer ribbon that said hope on it as well.  This was his reaction when he opened it:

Oh my gosh...how much do I love him???!!!  He really is the best Oncologist for me.  He always has my best interests at heart and is always genuinely concerned about how I'm doing.  P.S. check out how big my chart is underneath the present - and that's volume 2!!  Not awesome.

November 29th I bit the bullet and finally got the PleurX catheter in my lung they have been wanting me to get.  The jury is still out on this decision.  Of course the people who put it in say it will only hurt for a couple of days and then I will be fine.  I've had it a month now...it took 2 weeks for it to stop hurting A LOT.  Then the insertion site got infected which was super painful.  After 10 days of antibiotics it still hurt and was still having drainage.  I went back to the surgeon and the stitches keeping it in place were tearing my skin and that was causing the pain and drainage, so he took them out.  It felt better, but still hurts quite a bit.  The tube that is in my pleural space rubs against my lung as I breathe in and out so it's sort of like having a pebble in your shoe constantly....but in my lung.  But I've been told I'll get used to it and won't notice it - of course by people who have never had one before.  I love it when they can tell me what I'll feel like when they have no personal experience with it.  I used to be one of these medical professionals and now wish I could go back and be an Oncology nurse now - the things I would explain and tell patients and their parents would be so different.

The nice thing is that I can drain my lung at home when ever I want to.  I just hook the drain up to this bag - it drains out and then I dump it, so I'm not always hooked up to a drainage bag.

My new appendage - It is on my right side lower rib cage.  It always has a dressing on it to keep it from getting infected.

I'm still draining a lot of fluid from it - about 1000-1200cc's per week. The docs were hoping that by putting the catheter in it might cause some scaring and decrease the amount of fluid being produced.  So far that's not happening.  I'm sure it is better that it is in, I just don't want it.  Hopefully the left side will behave itself - the PET showed there was a moderate amount of fluid, but I only have to get that drained occasionally.  So that's the skinny on my medical update...chemo, blood transfusions, lymphedema therapy, accupuncture, palliative care appointments, lung draining, etc...etc...etc...so my days stay busy.  I'm not looking forward to deductibles and out of pocket maximums to start over in January.

On a better note - there have been a few highlights along the way.  One that has made a major impact on my life has been getting a new bed.  I have to say I end up spending more time there than I want to admit, but chemo fatigue is real so I thought I would invest in something amazing.  I ended up getting a new headboard and adjustable frame/mattresses.  It has been the best investment ever...and of course I needed people to try it out with me.  My kids will come lay by me and not want to leave - which is good for me and everyone who tries it out lingers a little longer. 

I love my new headboard from Downeast - the best part was it was on close out plus they gave me an extra 10% off and set it up for free.  LOVE!!!

Not only were we testing the new bed out but my friends wanted to try my new hats out too. :)  I do love my "Love Your Melon hats...they are comfy and warm!

The next major highlight of course was swimming with dolphins.  I've always wanted to do this since I was a little girl.  I wanted to be a marine biologist and train dolphins and whales.  These creatures are extraordinary! They are so intelligent, graceful, intuitive, and beautiful.  If I could spend every day with them I would!  This was definitely one of the neatest things I've done in my lifetime. We were able to spend about an hour with them - I wish it would have been longer.  I love marine life, well maybe not sharks...but one more reason to want to live by the ocean.  Here are some highlights:

So much love for this animal!

My sister Robyn giving it up to this cute dude...hopefully the hubs wasn't too jealous.

My sister left her lipstick mark on this guy.

My niece Megan was a little scared at first but soon got used to how amazing they are.

They love their underside tickeled.

My niece Courtney loving every minute

 

This was a great thing to check off the bucket list.  We ended up going on Thanksgiving.  My kids said "Can we do this every Thanksgiving???"  It was pretty pricey, so I will have to think about that one. :)

We rounded off the year with Christmas.  I have been so blessed despite all this cancer crap this year.  I've been able to go places I would have never thought I would see in this lifetime.  I have been able to strengthen many relationships, been able to love and be loved by so many.  I have realized who my true friends are and how blessed I am to have so many.  Despite having to move away from my best friend and sister, I have still been able to see her often and she is involved in most of my excursions.  I have a wonderful doctor and the capability to get treatment in AZ if I'm there and need chemo.  I live in an amazing ward and have a wonderful Bishop.  My family makes sure I'm taken care of.  I often experience many tender mercies and am happy even though I can't do many things I used to be able to do.  I still try to stay as positive as I can, and keep trying to cross things off my bucket list so I have things to look forward to.  I don't like making New Year's resolutions, especially this coming year because I don't know what it will bring but I do have some goals along with bucket list activities.  I need to get my sewing machine out and set up and get going on quilts again.  I would like to try to make a quilt for everyone in my family before I get too sick.  I also need to get scrapbooks put together for my kids.  Those are 2 big tasks so I'm going to stop at that and add more later if I get those projects all done.  I'm happy I've made it one more year.  Here's to a wonderful 2017 and hoping I will be back here setting more goals this time next year.  I'll leave you with some pictures from our wonderful Christmas.

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Ugly Christmas sweater and jello squares...goofballs!

Part of my brother Jeremy's family

Our famous candy bar game

Santa dad

My most favorite Christmas present - it's an infared lamp that is supposed to promote healing and decrease pain and inflammation.  It feels wonderful!!!

And the kids loved their personalized hydroflasks which made me happy!

Oh yeah, one last thing that makes my heart happy - My sister Robyn is here from AZ for a week.  Even though I feel lousy from chemo yesterday we have fun laying in my new bed watching movies and netflix.  We plan on going to the movies a lot and are going to try to go to the Cirque Holiday show tomorrow at the new Eccles Theatre.  We are also going to try to take the kids to the Midway Ice Castles which we haven't been to yet.  It should be a great week!

Be brave, my heart. Have courage my soul,

Tiffany