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

Too Toxic

It's been a long time since I have blogged.  I have tried several times, but for some reason couldn't bring myself to do it. A lot has happened in the last few months - it's hard to know where to start. I've been trying to cross things off my bucket list while getting treatment.  I'm finding that the things I want to do, I should have made the time to do them long ago instead of now waiting until I've been given a deadline.  If I can impress anything on anyone reading this it would be just that...try to find a way to do the things you have always wanted to do, plan them, make time for them.  My body is weak - I feel like a young person with a 90 year old body. From the chemo I have neuropathy in my hands which makes it difficult to do simple things like type, hold a pen, quilt/sew, even taking my contacts out. My fingers are almost completely numb. My feet are numb with neuropathy as well, which makes it difficult to walk. I've fallen about 7 times in the last few weeks because of this. It's difficult to tell if you are stepping down on your feet right.  My legs feel like noodles - very unstable to walk on. The chemo has affected the muscles in my legs and arms so once I fall I don't have the strength to get up on my own.  It has been very humiliating needing people to help me up off the ground.  I used to be so strong...this frail body of mine is not me. The chemo I have been getting since June has become too toxic for me.  I started getting a horrible burning rash with the last couple of doses.  We were hoping taking steroids for 5 days with chemo would alleviate the rash but as soon as the 5 days were up the rash came with a vengeance.

 
It's hard to tell from this picture but this rash was on FIRE!!  It's become an every 2-3 week routine to drain my lung.  I've lost count now...I think I'm up to 15 or 16.  Dr. Litton said it's time to get the implanted catheter. (PleurX)  I don't want it. I don't want it. I don't want it!! One more tube/procedure/risk for infection.  On the other hand I can drain my lung at home and I won't have the risk of getting my lung punctured with the thoracentesis. We were so hoping the chemo would reduce the fluid building up around my lung but it has not done that.  In fact, last week I had to have my right lung drained 3 times in 8 days and now the left is following suit - I had to have the left side drained on Thursday before we flew out on our Costa Rica trip.  I was so excited to have been off oxygen for about 4 weeks, but all of a sudden I have needed it again.  My sats have been in the 70's- when they should be above 90.  This has been very disappointing because my sats have never been this low - even when my lungs were full of disease. The chemo has also had an effect on my vision - I haven't been able to see for the last 6 weeks with my contacts or glasses.  It's been frustrating, I can't read things, and sometimes can't drive.  I've also been swelling up like a balloon. My cankles are super attractive.

So what does all this mean???  Dr. Litton said the chemo I've been on - Abraxane and Xeloda have probably reached their maximum potential for me.  Now they have become too toxic to give, and they aren't working like they used to be. (due to my new need for oxygen again and the increased frequency of thoracentesis).  This was hard news to swallow as there are not many drugs they can use to treat my disease. I was hoping to be on this chemo for much longer than 4 months.  He gave me the options...which were only 2 for now.  We decided at my last appointment that we would hold my treatment until we get back from Costa Rica.  This will allow my body to try to get rid of all the toxicities before we start the next round.  I had mixed feelings about this.  I was glad to have a break from chemo - my body is such a train wreck right now, but I'm also freaking out because it will be about 3 weeks without treatment.  I can just imagine all those rapidly growing cancer cells going crazy!  I will have a chest CT the day after I get back from our trip and the next day will start Carboplatin and Gemcitabine.  I'm not looking forward to that combo, but there aren't many options.

So for now I will focus on this beautiful country we are in.  Being at the ocean makes everything better.  I haven't had a vacation with all my kids in a very long time.  It has been good to all be together.  It was priceless watching their faces as we took off on the plane for their first time.  This trip has been good for my heart.

More to come later - I won't wait this long to blog again.  I still have lots to catch up on.


Be brave, my heart. Have courage, my soul.

Tiffany

Taking a little break...sort of...

Well, I got a hefty dose of steroids today with my chemo, so it looks like I'm not sleeping tonight, so I will blog the goings on of the last couple of weeks.
 I needed a break...well, sort of a break - not taking a break from chemo, but something.  I needed a little change of scenery and felt a need to get out of Dodge.  Since I still needed chemo, I had to be a little creative or I'd always be stuck and not able to go anywhere. Since the kids are out of school and I'm a "professional patient" we have a chance to do some inexpensive, short road trips which we haven't had much opportunity to do.  Dylan wanted to go to EFY with his Arizona "squad" in Flagstaff for a week so I decided to stay with my sister for a couple weeks in Peoria.   It has been a great break and I've been able to get my chemo at my former job - the Mayo Clinic which has been a blessing.  So we packed up the car and headed South.

Packing it all up in our new addition to the top

Getting ready to get on the road

The dog has the most comfy spot in the car!

We stopped 1/2 way through in Kanab...had a little Mexican for dinner

We stopped over night in Kanab, visited the Best Friends Sanctuary where they have like 1700 animals that are available for adoption...dogs, cats, horses, bunnies - you name it, they have it.  I love that they are a no kill shelter.  If you pass through Kanab, I highly recommend you stop in there for a tour.

Monday morning we dropped Dylan off at NAU in Flagstaff for a week of fun with his friends, and we headed for Phoenix.  As we got out of the mountains where it was in the high 60's we encountered this...

That's right...111 degrees...ugh

The heat is something I have not missed and I find I don't tolerate it even more now that I'm back on chemo.  Good thing there is good AC and lots of fans going here!  I have been bad about taking pictures while I have been on vacation.  We have done a lot of relaxing, breathing, eating, movie watching, fun on the lake, Wet n Wild, and seeing friends...and of course 2 doses of chemo were thrown in.

Killing cancer one dose at a time!

My bestie from Mayo - Maureen "Mo" I pretty much thing she is my sister from another mister!!  Love her with my whole heart!!

Doughnuts Mo brought from Bosa

Always fun times when at my many many appointments....craziness is bound to set in.

Cheesecake factory after chemo...the best part of the day.

I swear we are twins separated by 3 years...we always end up ordering the same thing.

So Yummy!!

I was able to meet up with one of my coworker's from Mayo for a few mintues.  I'm so glad we were able to see each other - even if for just a few minutes.

Kimberly and I...we share so much in common - we had a instant bond when we met.  Love her so much!

Sorry to keep throwing these pictures in, but it is something that affects me daily and determines if I spend most of the day with my feet up and not walking on them, or if I can go out and try to be normal. And it's part of my documentation of my treatment, so you get to see more feet pics. These are my feet on the day of chemo.  This is the after effects of my last round of chemo where my feet were literally on fire...I'm a little nervous for them to be this bad and starting chemo again - with my blood counts dropping, especially my white blood cells I'm worried my feet aren't going to heal and then they will get worse with this round...I'm praying for them to heal quickly.  Dr. Litton did drop my oral chemo dose for the second time - so hopefully my feet won't get too bad this time.  I'm currently on day 8  and everything starts falling apart on day 10.

Ouch!

More ouch!

Most of my stubble has fallen out now which I'm so thankful for. (wait...what??? Did I really just say that???)  For some reason as you lose your hair with chemo, something crazy happens with your scalp - it hurts so bad.  It feels like pins and needles in every single follicle on your head.  It hurts to touch it, not touch it, lay/sleep on it, wash it....everything. Once the hair falls out it doesn't hurt anymore.  I'm stuck with some lingering hairs that feel really course and yucky.  If I don't loose them soon I think I might have someone take the bic to it so I can fully have a Kojak head.  It really bugs me.  I'm learning to deal with the staring but not fast enough...I think my go to has become to not look at people anymore, which is sad because I like to smile and say hi and be friendly.  I want to make a shirt that says "Take a picture, it will last longer!" I don't know why it is bugging me right now so much, but it is.  Today we went to a restaurant and this lady stared at me as I walked to our table.  She was still staring as we sat down and I looked over at her again.  I hope this irritation will go away - it's not me...I'll have to figure out how to not let this bother me...it messes with my mojo.

I thought this was funny, but I don't blame my Oncologist because he's my favorite.  I just blame everything on cancer and chemo....after all they deserve the blame.

Friday was lake day - it's always so much fun.  I wish we had a boat so I could take the kids out more! 

Maddie and Kevin

Soaking up the AZ sun!

Chillin'

Courtney and Dylan 

Maddie and Kamilla

My Bubba

What's a lake trip without dogs?

Saturday June 18th we went with my niece to go through the Temple in preparation for her leaving on her mission to Hawaii...it was an awesome day!

This young lady is going to be a great missionary!  I love her so much!

Later this afternoon we wound up in Urgent Care and then to the Emergency room for Robyn.  She had huge lymphnodes that popped up overnight on the left side of her neck that were super painful.  After a bazillion hours in the ED and a CT scan the results were.....are you ready?..... A muscle spasm.  WHAT???  I'm no doctor but there was no way this was a muscle issue.  We asked if it could be infection or an abscess and he said no and sent us on our way.  We both were like...there is no way this is a muscle problem.  Seriously....

One thrilled mama....NOT!

Just visiting this time...You can see my left over rogue hairs here.

Sunday the 19th...well this happened to be a record breaking heat wave in AZ.  I'm so glad I could be here to witness this blessed event....NOT!!  OMG - it was so hot you could barely even breathe outside.  We decided the heat was for the javalenas, so we escaped to Laguna Beach that night!

Yes...that's right - 120 degrees!!  UGH!!!!

The beach is my oasis.  I crave it and long to be near the ocean at all times.  There is something so calming and rejuvenating at the same time.  It is my happy place.  I'm so glad we could take a couple of days to spend at the ocean.  So many memories and thoughts crossed my mind as I walked along the shore.  I couldn't help but wonder if this might be my last time at the beach so I soaked every moment in.  I hope I have many more adventures at the beach.  I have a trip to Hawaii or Costa Rica or somewhere similar to take all my kids to on my bucket list.  We have never been able to afford something like this - it's a once in a lifetime thing for my little family.  We have taken many little road trips to places that aren't too far from home while they were growing up. I hope I can save enough money to get them all there with me before I'm on too harsh of chemo that I won't feel good enough to go.  I wish I didn't have to think about things like that, but unfortunately my time is limited and I want to make the most of my time while I still can.

Day one was awesome...Beach time, dinner at a yummy Italian restaurant and Finding Dory.

Lots of sunscreen and a huge umbrella so I didn't get sunburned.

Courtney and Maddie enjoying the water

Beautiful landscape

Goofballs!

I'm not sure if walking in the sand was good or not on my feet  - I sort of think the sand helped to exfoliate the dead crap waiting to come off.  It did feel good to soak my feet in the cold ocean.

Day 2 wasn't as awesome as we wanted it to be.  Robyn woke up with her whole neck totally swollen with huge lymphnodes everywhere. The swelling was starting to go up into her jaw and face.  We sent the girls to the pool and beach and we went to the local ED again - hoping and praying for a better doctor who could actually diagnose her correctly. We got there at 1000 and finally left at 3:15.  The did a CT scan again to make sure it wasn't an abscess - which it wasn't.  They felt like it was an infection in her lymphnodes even though she didn't have any other source of pain/infection - no sore throat, no sinus issues, nothing.  So, it is weird and we aren't sure what caused it, but they gave her IV antibiotics, and pain meds.  When we were finally released we went to the pharmacy to fill the RX's and they hadn't written in the date so the pharmacy wouldn't fill them.  We had to go all the way back to the hospital so the doctor could write the date in and then back to the pharmacy...this added an extra hour.  We didn't get home until about 4:30 and Robyn felt lousy.  I felt so dang bad for her!!

Obviously not thrilled about being back at the hospital.  The nurses were great and I feel like the doctor was good...it just took way longer than it should have.

Day three was much better even though we had to check out at 11:00.  We packed up early and headed down to the beach for the morning.  It was beautiful and not crowded.  We were able to see a pod of dolphins swimming along not too far from the shore. The only thing that would have been better would be for those dolphins to swim closer to shore so I could touch them, or swim with them.  Another thing on my bucket list.  I wanted to be a marine biologist when I was growing up so any interaction with marine life is something I love!

We come to the beach to unplug.  :)  haha

Watching the surfers

Our awesome hotel

SHARK!!!!!  Just kidding - it was the dolphins.  :)

My little buddy - I was not going to let not being able to breathe get in the way of my fun!!

After a fun and relaxing morning at the beach, we checked out and went to Dana Point to eat at Stacks Panckake House...it was delish!

Freshly squeezed orange juice, omelets and pancakes...yum!

Maddie ordered an Oreo Waffle

I think she ate it in about 30 seconds. haha

Build your own burger...lookin' good!!

We are such foodies...I'm sure I post more about food than anything else.  I just wish I could taste what I'm eating....I can't tell you how hard it is to not be able to taste yummy food, or have things like water taste like metal. This is one loss that has been sad, frustrating and depressing. I know I shouldn't feel like this about food, but I do...let's face it - I really like food. You would think that since I can't really taste food, I would lose a little weight...alas, not such luck.  Stupid chemo...

Speaking of chemo...we got back to AZ just in time to get another dose of the good stuff.  I still think it's weird that it looks like milk.  I had my labs drawn, then we went to lunch and back to Mayo for chemo.  We ate at Carlos O'Brien's - which I think is a weird name for a Mexican restaurant...Mexican/Irish name...but no worries, it was delish!

Taco, enchilada, rice and beans...For what I could taste - it seemed pretty good.

Good times at the Mayo clinic!  We have spent way too much time in hospitals this "vacation"

Abraxane...the new milk.

Got milk?

Living the dream!

We went home after and I took a nap then took Dylan and his buddies out for ice cream.  I just love this group of boys - they are good kids.  We were missing Andrew and Cam.

"The Squad"

Enjoying Coldstone in only 103 degrees tonight. 

I definitely have so many things to be grateful for. It was only a few weeks ago I could barely leave the house not being able to breathe and not being able to expend very much energy.  I was pretty much almost housebound.  I feel like this Abraxane, no matter how much I didn't want to start IV chemo, has really helped to start getting the disease in my lungs under control.  My breathing is so much easier, my cough is practically gone and I can get out and do more things.  I still struggle when I have to walk a lot - but it is much better than it was.  I have to admit I really took breathing for granted.  It's something we do daily without much or no thought.  You don't know what you have until you become compromised.  I thank God every day that my lungs continue to try to work and I can breath easier - even if it is with oxygen. I'm so blessed that there is oxygen in tanks so I can breathe! I'm so thankful I was able I was "healthy" enough to come on this trip and that my sister took us in.  It makes travelling on limited income doable.  I'm thankful that I have good doctors that try to make my quality of life as good as it can be right now. I love life and I know that I'm blessed with wonderful friends and family that put up with me.  You don't know how much your prayers, well wishes, words of love and kindness help me get through each day.  I know I can be grumpy sometimes and don't always have the best attitude, but I will keep on trying to be better and to fight this beast!

My new mantra...the world needs more love - more about this later.

So true...

No "words of wisdom" this week...no difficult words to try to process/come up with a witty comeback which was nice.  Just lots of staring...If you run across someone struggling physical;y or by their outward appearance, please do not stare at them.  It's hard enough dealing with what they are struggling with on a daily basis.  Staring is just a huge reminder that they don't look/feel like they fit in with everyone else.

I've had lots of little victories these past two weeks -the biggest one - being able to to get out of the house long enough to have a little vacation!

Have a great week everyone - remember not to take little things for granted!

Be brave, my heart. Have courage, my soul.

Tiffany