The Plan until things change

Well, I saw Dr. Litton yesterday.  Warning...this post will not have any pictures or cutesy sayings...just a short post with the facts as that is all I can handle for today.

The cancer is starting to take over everything.  I can't breathe and my platelets were only 13 after getting chemo last 4 weeks ago. He felt like it was because of disease that my platelets are so low because there is this fine line between more chemo and bleeding out or no chemo and my other sypmptoms getting worse from disease.  There is no good decision. We decided to give a dose of chemo to see if my breathing can improve a little bit and watch platelets and give them if I start bleeding.   So, now it's just a waiting game.  Watch, wait, transfuse...rinse and repeat.

We talked about getting things in final order sooner than later. I may have 3 months if  this chemo will work in my lungs. The pain is becoming worse in all my bones but I can assure you, not being able to breathe is worse.  I can't even efficiently cry the way I want to without stopping to catch my breath.  Who knew something so benign and ordinary would become something so important in my life.

Now to have tthe family meeting probably Monday. This will be the most hard thing in this rollercoaster of emotions and ups and downs. Pray that I iwll know what to say to my kids to make this a little easier on them...if that is even possible.

Be Brave, my heart. Have Courage, my soul
Tiffany

Hospital stays, harrowing week, hepatic lesions...

Well...this has been a harrowing week to say the least!!

It all started last Monday evening, I had this horrible abdominal pain.  As a nurse all the "itises" start running through your mind...typhlitis, apendicitis, etc... None of it seemed to be in the right spot and I had no fever so I thought I would wait because then you become paranoid that it's "just constipation" and then you really feel like a dork. After hours of  waiting and second guessing myself I wound up in the ED anyway. The cramping and distention and pain was pushing up into my lungs and I just couldn't breathe.  Since breathing trumps everything - the ED it would be.  I have to say that I have had to change my tune about St. Marks.  I think I say this every time I talk about them.  I had such a good experience. By the time I get back to my room and start to change, there is always a team of people that show up immediately between doctors, nurses and techs.  I got a chest xray which didn't look great and and abdominal CT scan - thank goodness just IV contrast and not the oral crap.
After waiting for the results they let me know that my CT looked pretty "normal." So I asked about my spleen wondering if my low platelets could be hiding out there.  They did say there was some spleen enlargement. When I asked about my liver they said, "well aside from the lesions, it looks normal too."  I said, "WHAT DO YOU MEAN ASIDE FROM THE LESIONS?????" They proceeded to tell me that I have multiple lesions in my liver - and they thought that I already knew about them...like they had been there for a while. My scan last month had no liver lesions....


Long pause.


Longer pause.


How many is multiple?  Too many to count?  They told me multiple meant more than 4 and we should get an MRI to get a better look at this new soft tissue occurrence. Talk about a bummer.  Here I have found a chemo that seemed to work right away and because of my low platelets I haven't been able to get it and now I have "multiple lesions." In that moment I was so overwhelmed by too many emotions.  What do I have to do to keep this monster under control??? I was angry, depressed, livid, sad, worried, and I just wanted to scream.  It's too bad at the times you want to scream the most, it's the times you have to keep it together the most.  Dr. Litton didn't think we would have to deal with liver mets but obviously cancer has a mind of it's own - especially mine.

Trying to be brave but mostly just crying.

We got the MRI done and having too low of counts bought me a hospital stay for Red cells, platelets and a bunch of electrolytes, strong IV antibiotics and such a cute little pink telemetry pack. Please note the hint of sarcasm in my voice.  I hate pink and tele packs.  The only good thing was IV dilaudid because I finally was able to get some pain relief. What I thought was only going to be an overnight stay turned into 4 days of pain management, getting electrolytes under control, getting too much IV fluid, getting too much lasix and 2 wonderful nurses I was blessed enough to get back to back for most of my time there.  Serena and Emily were AMAZING!  I couldn't have made it through my stay without them. They were on time or early for everything and such great advocates for me with the doctors.  One day I could not breathe and my pain was so bad I thought I was going to go to the ICU and be intubated for sure.  That's when I meet this guy...

This is my pulmonologist Dr. Johnstun, or Dr. McSteamy - which ever you prefer. He looks better in real life - if you can believe that...even my mom thinks so. At first I wasn't very happy at whoever was my pulmonolgist because he ordered these:

If you have never seen these little red dots...you don't EVER want to see them.  They may look small and innocent but it involves a little test called an "arterial blood gas."  This means they need a sample of your blood from your artery instead of your vein like it usually is.  It is hard to get and painful.  Needless to say, they were never able to get the sample because my arteries are apparently harder to poke than my veins. And then this as well...

Super fashionable but effective

 I quickly forgave him because he was able to get my pain and breathing under control.  So....now I'm on lots and lots of steroids but I can breathe a little easier.  I was lucky enough to have some lovely little visitors come and see me which was nice because the days are long in the hospital.

Sweet Shannon

Lovely Lisa

The beautiful LeEtta and Dawn.

And this beautiful necklace from my sweet friend Stephanie in Washington:

So finally I was discharged on Friday and I was lucky enough to have my sister Robyn come up from AZ.  So of course this had to happen:

Oh frozen hot chocolate...how I love you!!

Since I've been home it's been a hard week of pain management and being able to breathe.  Even with steroids it's still very difficult. I've spent lots of time at the chiropractor - a special thank you to Dr. Crowley, Dr. Christensen and Dr. Mahoney for making life more livable.  Also to my sister who has rubbed countless pain relieving doTerra oils on my back trying to relieve the pain.

I don't really feel like talking about anything else today.  The new mets diagnosis has been devastating to me.  I see Dr. Litton tomorrow to see what we can do.  Even if I need platelets every other day I don't care...I need the chemo.  I hope we can figure something out. Something to give me more time.

Be Brave, my heart. Have Courage, my soul.
Tiffany

Hospice, Hair and Hamilton

I was just looking through my blog and realized my very first post was from exactly one year ago today.  Funny how I sat down to update things today...also interesting how things have changed in just one year's time.

My cute little grandma that I've been living with and caring for during the last year and few months has been on hospice for many months.  She was 97 years old and needed some help with meals and cares since my grandpa passed away last December.  I was able to help provide some of the care that she needed and I'm so grateful for the opportunity to serve her and help her in the last year of her life. She was my favorite grandma - we always loved going to visit at their house. They had a swimming pool and we spent many summers swimming our time away.  She ended up falling and hitting her head and slowly declined over a weeks time and ended up passing away last week. She lived a great life full of love, heartache and everything in between.  I'm thankful she taught my mom how to be a mom and those things were passed down to me.  I'm happy she is now with her husband, 2 sons that have passed and her parents and family.  She always loved holding the new little babies born into her family.

We had the dedication of the grave and a short memorial service the night before.  

So I guess with the loss of my grandmother that leads to another loss for me this week....my hair.  It's been able to grow since I changed my chemo clear back in October.  It didn't get very long but had finally gotten to a point where I could put a little product in it and spike it a little bit.  It felt like baby duck hair, very soft and silky.  I still mostly wore a hat because I didn't like the color and I just hate the growing in stages. So many of you might not know I even had anything growing under those comfy hats.  This is basically what it looked like...

I've had 2 doses of my new chemo, and I could feel my head getting sore which meant I knew the inevitable was coming...my hair was going to fall out again.  It doesn't seem as devastating this time as it has in the past but it its still a loss.  I guess it will be cooler with the summer coming and my head does get really sweaty.  Still it would be nice not to stick out like a sore thumb.  I don't know why I care anymore...actually I guess I really don't care anymore, there are so many more important things to worry about.  Hair is the least of my worries.  I've been able to rest at my sister's house this week in beautiful Arizona so I called up my lovely hair dresser Jenny and she lopped off my couple inches in a few swipes of the razor. It was super uneventful and quick...no tears no words of wisdom. Just hatred for a disease that keeps taking and robbing me of one thing at a time from a life I once knew.  Every couple of weeks to months I have to re-evaluate what my new "normal" is. After we shaved my head we went to get a dole whip so I could cross that off my bucket list.  P.S. Why have I not had dole whip until now??  It was super delicious!

Freshly buzzed

The fuzz will all be gone by next week

Dole whip deliciousness to ease the sting with Robyn and Jenny

That leads me to the best part for last.  HAMILTON!!! 2 bucket list items crossed off in one blog post is pretty awesome. I was blessed enough for friends and family to make it possible for me to see the play Hamilton through a generous "go fund me" account.  I was very humbled that it happened - I feel like there are so many deserving people who could use the money for their needs.  Luckily I have the greatest friends that live just outside Sacramento. We had talked in the fall about how much fun it would be to go to the show when it came to San Franscisco in the Spring.  As the date got closer with the go fund me account, plane tickets and accommodations were made for me to make the trip out to stay with Jeff and Heidi and their family in California so we could see the play. As things began to unfold it was looking like my health was not the best it has been in a while.  I had missed chemo for 6 weeks because my counts were too low to get chemo.  My lungs were getting worse and it was becoming so hard for me to breathe. A few days before I was supposed to leave on my trip I was calling Heidi to let her know there was no way I was going to be able to come on Friday like I had planned.  I could not walk from my room to the bathroom without being extremly winded and unable to catch my breath. I was so sad, not only because I was going to miss the show but because I felt like my life was quickly coming to a fast halt. I was scared, I could. not. breathe.  I don't know if you have ever felt that way but it is one of the scariest things I have had to deal with.  I called Dr. Litton's office.  I was panicked because he had been out on his own leave and I felt alone and desperate.  I didn't care that my platelets were only 44...I needed chemo. I needed something...I needed to be able to breathe.  There was no way I could go one more day feeling this sense of impending doom and desperateness. I was in the office the next morning with a new plan.  I would start Halaven at 80% and they would watch my counts really closely.  The condition was if they gave me chemo I wouldn't be leaving the next day for my trip.  I already knew I couldn't go...I was too scared to go.  Something happened that night that changed everything.  They had given me an IV steriod as a premed for my chemo.  That night I realized I could breathe!  There was no way the chemo had worked that fast.  I could walk without being winded and the panic I was feeling was gone.  The show wasn't for 6 more days, if I had no chemo side effects and if I could get them to let me be on steroids for 5-7 days there may be some hope I could go to the show.  The next few days I continued to improve and they did allow me to go on steriods which was a God send for my lungs.  It was so nice to be able to breathe.  I was able to change my 7 day trip into more like a 2 1/2 day trip as long as I used my wheelchair through the airport and the city I thought I could do it.  It seriously was a miracle that I was able to go on the trip.  I know there were so many people who helped to make it happen and lots of prayers were answered to get me there. I'm not going to say that it was approved by my doctor's office, but I figured I was in California, not some third world country and there were hospitals close if I got into trouble.  Luckily for me everything worked out just fine.  I was lucky enough to get to hang out with these cute kids...

These kids have my heart.  I have known Jeff and Heidi and their family for over 9 years.  We met at Primary Children's and they have changed my life for the better.  They are the most loving, kind and generous family you will ever meet.  They are always trying to do something for someone else and always put others first. My life is so much better for knowing them and their adorable kids.

The day of the show we spent in San Francisco - we rented these go cars that were ridiculously hideous and so much fun!  We sped (as fast as you can go in these 150cc motor cars) all over the city...got stuck on the steep hills and got lost several times but had a blast.  We found out that I'm a HORRIBLE navigator...don't ask me to try to read a map and expect us to get to our destination. Here are some of the fun pics from that adventure - don't laugh at our hideous helmets.

It was a really fun day! My brother Jeremy that lives about 30 minutes away from me in Utah happened to be in San Jose for business and he drove into the city that night and we met him for dinner.  That was a great surprise and fun to see him in San Francisco.

Finally it was time for the show we all had waited for.  We got parked and to the Theatre - we were all so excited, especially Jake.  He had the words to all 39 songs memorized!  That was quite impressive. I didn't really know the music or many things about the play on purpose because I just wanted to experience everything brand new with fresh eyes.  I love musicals and anything that has to do with Broadway.  If I could do things over in my life it would have been to incorporate being in theatre somehow along with everything else I've done up until now.

Our seats were amazing, the show was amazing, the cast was amazing, the music was amazing, the theatre was amazing, the company was amazing.  I guess you could say the whole experience was AMAZING!  It was everything I could have hoped for and I wanted to turn around and see it again the next day.  Needless to say I have listened to the soundtrack non-stop since the show. If you ever get the chance to see it...try to see it. I'm so lucky and blessed to be able to cross it off my bucket list. It was the most fun I had been able to have in weeks. Even though it was a short trip and it was difficult for health reasons...it was so totally worth every effort it took.  A special thank you to everyone who helped make that happen - especially my sweet friend Shelley Cleveland who took the initiative to make a cancer fighter one happy girl!!  Jeff and Heidi... a million thank you's and I love you!

So there were lots of things that happened in a short period of time...I got back from the Hamilton trip, had the funeral, got a second dose of chemo and then took off in the car to Arizona.  I'm not looking forward to driving back tomorrow.  I will be glad to be able to see Dr. Litton next week.  I'm looking forward to seeing what the new plan is with this chemo.  It seems to be doing something already - my breathing is better and the drainage around my lungs is slowing down...THANK GOODNESS!  None of the other chemo has been able to slow down the drainage, so I'm hoping this one will keep this cancer under control so I can have a little more time.  I still have things I need to and want to do.  I still need more time.  Here is a beautiful picture of my sister's backyard in AZ. It is in the 70's and beautiful.

And because I like funny stuff I couldn't pass up this shirt...I'm sure I've posted it before but it's a good reminder.

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