A Little Victory

 Life is real, in all its complexity.  And although it can be painfully difficult, it can also be unspeakably wonderful.  I've never really understood pain, because I have a very high tolerance for it.  When my doctor has heard me complain of pain, he knows I'm in a lot of pain, because I typically don't complain of it.  The past few months though, I've been in pain.  Pain, similar to when my tumors have grown.  The pain is located in my left lower back and spine, which is referred pain from the mass on my right posterior iliac crest; this tumor had grown on Decembers scan.  It literally feels like my spine is being split in half.  And over the past week or so, the pain has literally waken me in the middle of the night or even prevented me from falling asleep.  The pressure of lying on my back or either side is almost torture.  I can't stand for more than a few minutes without pain, which means I'm not shopping and can barely go to the supermarket.  Sitting is much more comfortable or at least bearable.   (The blue is where the mass is and the red is where the pain is most prominent.)

And so today when I saw Dr. Dan I was sure he was going to tell me that my tumors had grown and that I'd have to start another treatment.  To my utter surprise, several of the tumors had actually shrunk including the one on the spleen and under the liver.  Some of them by almost half.  In the nearly 3 years since the cancer returned, I haven't had any visit when Dr. Dan has told me that the tumors have shrunk, yes there have been times when the tumors have been maintained or increased slightly in size, despite the 9 or 10 different treatments I've been on.  It has only been 3 months that I've been on Tamoxifen and we've seen incredible improvement.  It makes me wonder what another 3 months will show.  The only downside to this medicine is some restless legs, mostly at night, some boney thigh pain and my hair has been falling out like crazy, which I don't love at all.  But if my tumors are shrinking, I'll take the side effects. 

Unfortunately the tumors on the posterior iliac crest, left kidney and the left ureter have not decreased in size, which means I continue to have the discomfort from the stint.  If I could will these to go away, I certainly would.  Hopefully in the near future they will resolve, because I tell you, I'm about to go crazy with this stint, yes it's better than the last one, but not in any way comfortable.  I do have two tumors which have grown in my epigastric region that I can feel that are soft tissue and not close to any organs.  These don't hurt, but are annoying and keep growing, which is why I was sure the others were growing too.  I can actually see one of them if I push my abdomen out far enough.  The crazy thing is my ca-125 jumped to 400, which it has never been below 237 (what it was when I was diagnosed).  It's mostly sat around the low 90's.  Of course a ct scan always trumps the ca-125 and really I think the ca-125 isn't accurate for me (and has finally caught up with the tumor growth) which is why it isn't a good preventative test.

Am I on the road to recovery or remission???  I'd like to think so, but I'm sure I will always have tumors.  If they can be maintained by a daily pill I'd be so grateful.  The CT report impression did say I had extensive metastatic disease, so I'm far from the clear, but at least I didn't leave MSTI crying and wondering how much longer I have to live.

Dr. Dan did inform me that the TSH (thyroid) jumped from normal 4 to 47, which explains why I want to lay around with my eyes closed and why I'm sleeping so well at night.  That's an easy fix, but it's an annoyance, since we've had trouble with maintaining it ever since taking the immunotherapy which I finished a year ago. This of course is a minor inconvenience.

Because of my friends and supporters at Colleens Dream and their connections, a few weeks ago I met with Dr. S in Phoenix.  He an oncology researcher at TGen, but recently came from Huntsman Cancer Institute in SLC, where I actually worked between college and grad school.  The first thing he said to me was that he knew Dr. Dan very well.  It has been amazing to me how all of my physicians have had a connection with each other.  He did mention to me that it was unfortunate that I was sitting in front of him as a patient.  He saw a healthy, full of energy woman, more than a cancer patient, which I appreciated.  As a provider, I have a small amount of insight into what my providers are hoping for.  I'm quite certain that in Dr. Dans office yesterday he felt the same excitement as I did when he saw that finally a treatment was showing some improvement.  We have been waiting for a specific gene test to be approved by insurance companies.  Monday morning Dr. S's office called to let me know the test had been approved.  On my lunch hour I drove the 25 minutes there and back for this kit that I brought with me to Idaho; a kit which I will take with me next week to the interventional radiologist who will do some biopsies in hopes that this research and testing will give us more information regarding these destructive tumors and knowledge to what treatment is best, even though I think we may have finally found the one!  
 
Prayers truly are answered.  There are so many people who have been praying for me for nearly 5 years.  They have been faithful, supportive and truly believe that Heavenly Father will answer their prayers.  As I was instructed early in my diagnosis in a Priesthood blessing, I've developed a great faith in those prayers that are being said for me.  It's quite a humbling experience, knowing there are people praying for me that I don't even know are praying for me.  I'm sure you are all so tired of praying for me, but your prayers are truly being heard, answered and so very much appreciative.  During the difficult times, I've wondered if my prayers are really being heard, especially when ct scan after ct scan and treatment after treatment hasn't shown any improvement, but instead tumor growth.  It has been down right discouraging at times, but I've never once had my faith or trust in the Lord waiver.  I've always hoped for a miracle or at least improvement and I've always believed just like the woman who was healed by touching the Saviors gown, that because of my faith I too could be healed.  Over the past few years, I have put my faith in the Lord and prayed that His will would become my will.  I don't know what His will is, but I hope that our wills are similar.  But if not, I will still believe that He see's the bigger picture and His plan for me.  

I know I've shared one of my favorite quotes on my blog before, but it has brought me so much determination and faith as I've patiently and not so patiently at times traveled this sometimes brutal cancer road.  Jeffery R. Holland said, "God expects you to have enough faith and determination and enough trust in Him to keep moving, keep living, keep rejoicing.  In fact, He expects you not simply to face the future; he expect you to embrace and shape the future, to love it and rejoice in it and delight in your opportunities.  God is anxiously waiting for the chance to answer your prayers and fulfill your dreams, just as he always has.  But he can't if you don't pray and he can't if you don't dream.  In short, He can't if you don't believe."

Whether we believe in the same things or not, I want you to know that I believe in happiness.  I believe in hope.  I believe in Christ and in his infinite atonement.  I believe in second, third and infinite chances to start over.  At this Easter weekend, I am most grateful for and believe  in the Resurrection knowing that I will live again.  Someday, I'll have my resurrected body which will be cancer, tumor and scar free!  I believe in everlasting joy and the eternal nature of families.  My life feels more whole because of my beliefs, and I know with everything I have that a grateful heart is a magnet for miracles.  Life is hard, but I'm thankful to be living it.

NOLA For Ben and Angela's Wedding

Last Wednesday at Midnight really on Thursday, I met mom in NOLA.  She has never been there, so this was fun to show her around.  I actually usually don't go there to be a tourist, but since Kirt was away on business most of the time, I decided that we would be tourists.  It was super fun, the weather was fabulous and the wedding we went there for was probably one of the best I've ever attended!

I rented a car and drove it around like I new my way around, which basically by the time I left I did!  Thursday we took in a city tour, listened to some jazz music, ate delicious beignets and walked around the French Quarter, where I sat every few minutes. 

Friday I took mom to the first restaurant I went to my first time in NOLA 15 or 16 years ago.  Camillia's Grill, which is this tiny place with the same old fashioned bar stools at the counter and the waiters wear bow ties.  We had hamburgers, french fries and talked some college guys from London, Spain and Ireland.  You never know who you will meet in NOLA.

We also found Angelo Brocato Italian ice cream and where we got the most delicious cannoli.  We really felt bad that dad and Troy and Becky didn't come with us and decided we'd take them with us next time.

Friday evening was the real event!  My cousin got married at the zoo and had his reception at the Tea Room.  It was a beautiful evening!  The ceremony was so well done, the food was top notch, the dancing was super fun and the company was fantastic.  I was so happy that Kirt was able to join us for the event!  It was seriously the best way to represent NOLA!  Ben's wife Angela is such a sweet girl and so much fun!  He was so grateful we were there and I'm so glad we went.  Such a fun memory.

Saturday they had a crawfish lunch (I didn't eat crawfish) and then we went to the St. Patricks Day parade which was crazy awesome!  Kirt spent the day with us before we headed back to the airport.  He is hilarious without trying to be.  I think I laugh more with him than anyone.  Mom and I also hit the Milk Bar before the airport for the best Chicken Satay Salad and Strawberry milkshake.  Until next time NOLA...which we are already planning in the Fall!

Disneyland Again

 We went to Disneyland again last week! Yes, again!  The kids are the perfect ages for it and love all of the magic that it provides.  It was seriously the best time to go to DL.  The crowds were super light and we really didn't have to stand in any lines.  It was pretty much the best vacation we've ever had.  It was fabulous because we stayed at a very close hotel by Disneyland, which meant that people could come and go as they pleased because we were within walking distance.  We also all had our own rooms, didn't have to cook or clean up breakfast!  But we were all next to each other which is fun, especially when I want to snuggle the kids.  We didn't have to wait for the slow people and those who got up earlier than others could get to Disneyland early.  Same with when we were Disneylanded Out if there is such a thing. 

I felt good as long as I wasn't having to stand or walk, which meant I wheelchaired it!

The weather was perfect, except for the last day in the evening there was a little rain, but we came prepared.  I've always had a thing for rainboots and raincoats, especially on kids!   

We all kind of slowly made our way there and were all only there for 2 full days, but it was so worth it!  Life for us is all about having fun and making memories!  My SIL got us all mickey ears and she put teal bows on the girls.  I loved it!