Sunday, July 9, 2017

Keep on Keeping on Cancer Update

I know it's been a while since I have updated you on my cancer journey and many have asked if I'm still having treatment.  It's been a journey to say the least.  A journey I'm getting use to, but one that I wish would end with me being healed.  I've tried to have the mindset that I have a chronic disease like diabetes or high blood pressure, but I want this to get behind me and let me get back to working more than 3 days a month.  Although that would mean I'd have to stay home more than I do and travel less!

I've pretty much not been on any treatment since my last dose of the immunotherapy on February 22.  I so wish that it would have worked, but it didn't so on to the next one; Rubaca which I only took for 3 weeks since it was thought it was making me sick and ultimately ended with a hospital stay over Easter Weekend.  It's hard to say if that was what was making me ill or if it was the tumor that is growing from outside of my stomach but pushing into my stomach.  At that time I was actually having two different abdominal pains, one was from a radiation induced colitis, which has finally resolved after several rounds of Prednisone.

I decided that after that experience I needed a chemo break through my many travels over the past few months, which is exactly what my body and mind needed.  It was a nice break too.  Unfortunately I felt rather sick through most of it with horrible stomach pain after eating.  A scan done in May showed the tumor had grown nearly 1 cm from early March to measure 3.1cm.  From the looks of the CT, the barium swallow and the endoscopy that I had in early June, it seems like this is the culprit.  However over the past few weeks I've felt pretty good with eating and rarely have pain.  I'm not sure if it is because I've learned how to eat to not have pain, if the tumor has shrunk on it's own, or if the Rubaca is finally out of my system and the cause of my pain.  Who knows, but whatever it was, I'll take no pain.

It was decided in May per Dr. Dan and other physicians at St. Lukes that surgery was my best option.  However I met with a surgeon the day I returned from Hawaii and after seeing the results of the barium swallow and the endoscopy he felt the surgery was to risky because it would involve a surgery of the pancreas as well, because the tumor is backed up to the pancreas.  The pictures show the tumor of the stomach opening into the duodenum (where the food goes from the stomach into the intestines.)  I did ask the surgeon what happens if the tumor gets bigger and I can't digest my food.  He told me he would consider surgery then or put a tube in where I could pass fluids.  Um no, I'm a foodie and life without food would be miserable and unacceptable.  How un-fun and un-cool it would be to go to lunch with my girlfriends and have to watch them eat delicious food while I sipped on my Ensure. 
By this time it was the middle of June.  I felt like I was back to where we were in May, what do we do next?  I have to remind myself often, like sometimes several times a day to be patient.  Answers to prayers don't often come right now or when we want them, but with patience and faith they come.  President Monson said it perfectly in today's quote from my quote of the day book that I read every night, "I testify that much joy comes as we recognize that we can communicate with our Heavenly Father through prayer and that those prayers will be heard and answered-perhaps not how and when we expected they would be answered, but they will be answered, and by a Heavenly Father who knows and loves us perfectly and who desires our happiness." 

Dr. Dan had talked with Dr. P in Boston who proposed we try a once a day pill to block the estrogen that is being produced by the adrenal glands.  It is thought that maybe the tumors are hormone related.  This medicine is typically used in breast cancer treatment.  I kept feeling like I needed to go to MD Anderson in Houston since I had talked to Kirts boss back in March who had ovc and went there with good results.  Dr. Dan was in full support of another opinion as well.  So I made the phone call and got an appointment June 30 with the director of gyn oncology who Dr. D actually happened to do her fellowship under.

MD Anderson and Mass General have both looked at my pathology slides.  Mass General told me that this was a high grade tumor that was fast growing.  MD Anderson disagrees and feels this is a low grade tumor that is slow growing and typically resistant to chemo, which would explain why I haven't seen any progress over the past 2 years (Yes it's been 2 years since I've had a recurrence).

I was super impressed with MD Anderson and Dr. S.  My visit consisted of us all sitting around a table discussing my  disease and my treatment.  I didn't feel rushed (which I never have by any of my physicians) and I was given plenty of time to ask questions.  Dr. S and her team also feel like the estrogen blocker was the way to go.  I loved that at the end of my visit, even though we agreed that I can continue to have my scans and treatment by Dr. Dan or Dr D, that Dr. S told me I will always be her patient and she can see me or answer my questions at any time.

I started the Letrozole (estrogen blocker) 6 Days ago.  I pretty much don't feel much different other than a few more aches and pains, which is a side effect.  It's more like just feeling like I worked out a little too hard.  Nothing I can't handle.  They say it causes hot flashes, but I've only felt my face flush once for a few minutes.

The first week in October I will have another CT scan to see if the tumors are shrinking or staying the same size.  I hope and pray for these results.  If not there is another medicine group called a Mek Inhibitor that we can try.

The Thursday that I arrived for the Ovarian Cancer Retreat in NC I started having excruciating low back pain, the same pain I had from the tumor in my right posterior iliac crest that was radiated in March.  Talk about disappointment.  For 15 days I took pain meds nearly around the clock for some relief of pain.  I couldn't get comfortable especially at night as the pain was worse with any position in bed.  Miraculously I had no pain yesterday, with the exception of a little at night and today has been the same.  Does this mean the Letrozole is already working?  I hope so, but I also believe that Heavenly Father is listening to me and answered my pleadings to take my pain away or at least make it bearable. 
I often have people ask me how I stay so positive through this journey.  It's because of my faith in the Lord and my desire for a miracle or maybe just the hope that my life will be extended past the projected life expectancy of one with this deadly disease.  I also realize that there are so many other things that are worse than what I am enduring.  I believe that the many prayers that are said in my behalf are heard by our loving Heavenly Father.  Yes, He is in charge, but I believe the quote my mom has in her kitchen, "Prayer Changes Things."  Most of all I feel so much peace and comfort from your prayers.  I really believe this is the real reason why this trial is bearable beyond what it should be.  So Thank You, even  though I know you are probably all so tired of praying for me, please don't stop. Keep those prayers coming!

Saturday, July 8, 2017

From NC to Houston to Milwaukee

 Last Wednesday I flew into Houston.  My reason for going to Houston was for a consult with MD Anderson.  Dr. S and her team were wonderful...More on my consult in another post.  That afternoon my cousin Ben had his friend pick me up and take me to his house.  He came home from work early and then we went to dinner.  It was great to visit with him and so good to see him.
That evening Ben took me to spend the weekend with my friend Charleen.  She moved from Nampa 3 years ago.  She surely is missed, especially on pool days at my moms.  We spent 2 days at the pool which was so nice and relaxing.

Friday night on a whim we went to The Lion King on Broadway.  I've been wanting to see this for a long time.  It didn't disappoint.  I loved it. Before hand we had some delicious Texas BBQ.  I can never get enough BBQ.
Monday we went to the one and only Blue Bell Ice Cream Factory.  I mean what else do you do when it's hot?  It was such a fun place and the ice cream was of course delicious.
Monday evening I flew to Milwaukee; Check off Wisconsin on my states to visit...only 8 more states to go.  I went to visit my friends Emily and Antonio.  We have been friends since I moved to Charlotte.  It has been 6 years since I've seen them when we both moved from Charlotte.  Oh how I have missed the times Emily I sat and chatted for hours at Panera.

The fourth of July was super fun.  I think I've worked every 4th of July for the past 14 years.  We first went to a parade, probably the best parade I've been to.  It was 2 hours long, they threw lots of candy and there were 2 camels in the parade, but only 3 horses.  The weather was amazing!  After we had delicious pancakes for lunch.  Emily made the most delicious coconut syrup.  I'll post the recipe as soon as I have her send it to me.  We then went to a pool party and then watched fireworks from the top of a parking garage.
Wednesday we did some touring of Milwaukee.  It is an awesome city.  All of the houses are old and beautiful.  We first went to brunch, then to the Art Museum.  Tony and the kids met us at the Milwaukee Market where we bought some spices, balsamic veniger, a coconut lemonade that I'd never had and a lobster roll that was almost as delicious as the ones in MVY.  I couldn't leave without getting some fresh cheese curds.  Oh, yummy!
 It's been so fun to travel and see all of my amazing friends.  I'm so blessed to have many fabulous riends.  Coming back to Phoenix and home is always wonderful.  It was so fun that Pam was driving through to her new home in Kansas.  So of course we had to do some shopping, eat some ice cream and sushi.  Phoenix is home and I love being in my home, in my bed and enjoying the beautiful sunsets that we have here. 6 days home before I go back to Nampa and another adventure awaits.
 

Wednesday, June 28, 2017

NC Summer Visit

I had such a fabulous time in NC for 10 days.  I haven't been out there that long for a good while.  I actually had only planned on being there for 1 week, but then things came up and I was able to extend it a few more days. 

I spent time with many friends, including some I worked with.  I did some shopping at Vera Bradley, spent time sitting around the pool, having lunch and dinner with friends, catching up, drinking lemonade and relaxing.  We even planned a girls trip to Destin Beach for the end of September!
On the last night I was there I Nick drove by this beautiful field of Sunflowers. 

Monday, June 26, 2017

Teal Rose Society


This past weekend I attended the Teal Diva retreat in Boone, NC.  It was at a beautiful place called The Art of Living.  The food was all vegetarian without garlic or onions, as they said they were dark or something like that.  It was pretty good, but we all agreed we like a little meat in our diet, hence the tray of chick fil a nuggets we devoured the last evening.
The Teal Diva retreat involved 14 mostly OVC, but a few uterine and cervical cancer survivors all diagnosed under the age of 40.  Some were even 15 and 16 when diagnosed.  Only 2 of us were having treatment and only 3 of us were actually currently not in remission.  There were also 3 ladies who were on the Teal Diva Board and one who is a NP at Dana Farber whose mother and sister both passed with OVC. 
All of these ladies are amazing and their stories are incredible.  I came away from this retreat fully energized, full of hope and a desire to keep up the fight.  One of the girls had a mother and sister diagnosed with OVB and passed away before she was 16.  On her 16 birthday she underwent surgery for OVC.  Unbelievable.

For the most part we spent the entire time relaxing.  The time went by so quickly.  Nick took me to my friend and fellow nurses Kendra's home Thursday morning.  It was so good to see her.  She had a re-occurrence in April and had her first chemo treatment 4 weeks ago.  We had such a great time together and I'm so happy she was healthy enough to attend even though she had times when she didn't feel well.  We drove together and met the other ladies in Boone.  There were 3 of us in each room.  After dinner we gathered together and one of the girls talked about writing about our experiences.  Um, yeah, I think I have covered that.  But I did write about something that I had been wanting to for a while and this gave me a chance.  (I still need to work on it before I publish the post.)  Saturday evening we gathered and shared what we had written over the past few days.  Every single one was amazing.  I especially appreciated the NP's.  She talked about what a typical day is like when she has to tell a patient that they aren't in remission anymore.  I could totally relate.  Remember the lady I had to tell this to just after I started chemo again in MVY?

Each evening we would gather together and talk or have a presentation.  When anyone was talking, they would have to speak into the Teal Rose (which is more of a joke that anything.)  Hence we dubbed us the Teal Rose Society.  We all stayed up late and got up rather early.  Needless to say I didn't sleep much, but it was worth little sleep.  

We each had a time where we took a pottery class.  I'm so not into art like that, until I got working on it.  I actually had so much fun and can't wait to receive my finished product in a few weeks.
We also had an amazing massage.  I had a lot of time to relax, read and enjoy Boone.  One day we went to Woodlands BBQ, my very favorite in Blowing Rock.  It being blackberry season, we stopped to I could get me some Carolina blackberries, yum!

All in All we had a fabulous time.  I can't wait for the next one!
The sunrise was beautiful!