Monday, March 27, 2017

On To The Next One

In early March I had another ct-scan.  This was done a few weeks earlier than planned.  I've been having horrible lumbar spine pain, different than the tailbone pain which has since resolved.  I've actually have had this lumbar pain since the holidays, but had just chalked it up to traveling.  In early February I started having this pain continuously and it worsened.  At this time I also developed complete numbness to the anterior aspect of my right thigh.  It's especially annoying when I feel the need to scratch my leg but don't feel any relief when I do scratch it.

The only idea I ever have that my tumors have increased in size is back pain.  And so I wasn't surprised when Dr. D told me the immunotherapy wasn't working and that the tumors had grown, especially the one in my right iliac crest wing and a new one was in the stomach, one around the pole of a kidney and one at the base of my left lung.  I tried really hard not to cry when I heard the news, but I was completely devastated.  I had hoped so much that this treatment would be the one that would shrink the tumors.  Dr. D wasn't as hopeful as she has been in the past.  Basically she said to me, "You ultimately know the outcomes of this disease" as she handed me a copy of the CT-Scan results.  She is a good doctor, but treats me more like a colleague than a patient. 

The options she gave me were to try a PARP inhibitor which has been very promising in BRCA positive patients.  I'm BRCA negative, however there is a 20% chance this will work in BRCA negatives.  The other option was start weekly IV chemo, one that she offered would take my hair.  Um, that isn't an option.  The bald part isn't so bad.  It was the growing it out that was awful.  And if I'm going down, I'm going down with my hair.  Call me vain.  So we are on to the next treatment with hopes it will be the one that will dissolve the tumors.  Given that I'm going to be traveling a bunch in the next 3 months I opted for the PARP inhibitor.  Dr. P mentioned this treatment when I saw him at Mass General.  When I left Dr. D's office I felt like my time was dwindling and that I really needed to get my affairs in order, which I do need to do regardless.

I cried several tears that day along with Lauren and my parents.  I'm so grateful they were with me.  But then we dried our tears and set out to do some shopping.  I was sure I'd cry myself to sleep that night, but I didn't even shed a tear.  That night as many other times over the past nearly 4 years I felt an incredible sense of peace and comfort.  The prayers of so many were answered and have been answered as I've been able to carry on my daily routines (with the exception of a hard workout because of the pain.)

Last Tuesday, regardless that my insurance doesn't want to cover the PARP inhibitor because I'm not BRCA positive, the drug company sent me 2 weeks of treatment which I started.  That night I broke out with hives.  My awesome neighbor found me some benadryl from another neighbor and after a few days the rash cleared up.  But what hasn't cleared up is the awful metallic taste that I have when I drink water.  I love my water bottle and drink a ton of water every day.  I have found however that adding crystal lite helps this problem as well as peppermint tea.  This treatment is so new that Dr. Dan has never even used it.  We looked up the side effects and 39 percent of people get dysgeusia or alteration of taste.

I started thinking that if the presacral mass, which actually shrunk 9mm on this scan, from the radiation I had in the Fall that it could help with the mass on the iliac crest.  I'm pretty sure this is what is causing the back pain because it is on the same level as the back pain.  Plus it is pushing on the artery and the nerve, which is causing the numbness to the thigh.  So I made an executive decision and made an appointment with Dr. Q.

This past Friday I returned to Boise for my scheduled appointment with Dr. Dan.  He is so optimistic and every time I leave his office I feel that I have several years to live.  He tells me we have yet to run out of options.  He also didn't feel that the spot near the lung was cancer.  That was reassuring.  He was impressed that I had already made an appointment with Dr Q and told me he was going to run down and talk with her before I saw her.  She of course is super positive and felt another round of radiation would help with my pain.  Typically she likes to do radiation over a 5-6 week period.  I don't have that long.  In fact I told her I only had a week.  She said she could do that but would rather do it over 2 weeks.  Even the social worker Diane was involved and got my plane ticket change fee waved.  I LOVE St. Lukes MSTI.  The staff is incredible, sincere and they feel like family.  The feeling is completely different than in AZ, where the warm family feeling is definitely not there. 
The Rubaca (which is the PARP Inhibitor) has some side effects which include nausea, fatigue and anemia.  I'm eating a lot of red meat with the hopes I won't become anemic.  The fatigue and nausea I'm trying to combat this with probiotics, omeprazole, an occasional zofran and caffeine. 

I had my first radiation treatment late this afternoon.  I feel just fine for now, with the exception of some killer back pain.  Given I'm having three times the dose as typical I'm sure the side effects are right around the corner.  We are also radiating two other small masses that I can feel in my pelvis which drive me crazy, especially because when I found the one around my pubic bone in June it was tiny (and Dr. Dan brushed it off as scar tissue) and now it is close to a centimeter. 

And so the fight continues.  I haven't given up and I won't until I can't hang on any longer.  The research and medical professionals would say there is no hope for a cure and there likely isn't, but there are still options.  I hope it's this PARP inhibitor and I'm one of the 20 percent that it works on.  I still believe in miracles and hope for one.  When I read my scriptures each night, it's amazing how a verse or sentence will catch my eye that gives me hope and faith to keep hoping for that miracle. 

Saturday was the General Women's Broadcast from SLC which our church has every 6 months.  The first speaker talked about my favorite scripture, "Trust in the Lord with all thine heart and lean not unto thine own understanding.  In all thy ways acknowledge him and He shall direct thy paths."  Every time I think of this scripture I focus on the word trust.  She however focused on the word lean.  Sister Cordon said, "When we spiritually lean to our own understanding, we lean away from our Savior. If we lean, we are not centered; we are not balanced; we are not focused on Christ."  I just love this.  It gave me new insight into this favorite scripture of mine.

In the same conference Sister Burton said, "But I know and I believe that thou are the Christ the Son of God.  Sometimes we have to remember in Whom we trust; some One that loves us perfectly and wants nothing but the best for us.  We may not understand everything, but as we seek to follow His loving example, we will find the peace that we are seeking in our lives."

I often think of the many people I've been able to meet, the opportunities that have come my way and the characteristics I've developed over the past nearly 4 years.  And it's all because of a diagnosis of ovarian cancer.  It is in these thinking moments that the why questions are answered.  

Sunday, March 19, 2017

Lauren's Visit

My friend Lauren came out for a visit for 10 days.  Oh, what fun we had.  It was nice to have mom and dad here for most of her visit.  We did a lot of work on the craft room.  Lauren is super talented, it helps that she is tall and knows how to work a drill!  I'm pretty sure there aren't many women who will leave their 4 young boys and husband to fly across the country to help their friend organize a very messy craft room.  Lauren spent 10 days away from her family responsibilities to spend time with me.  This is a true friend indeed.  I'm so grateful for mom, dad and Lauren for all that they have done in my home.  I really love the new additions.  They make me want to be home more. 

One day we spent watching a Spring Training game, Giants vs. Dodgers.
It was a perfect day at the ball field and super fun. 

We did plenty of shopping, watched some sunsets, ate lots of good food at restaurants I've never visited, had us a spa day and drank lots of homemade lemonade.  All in all it was a fantastic time, even though the days always ended quicker than when I'm home alone. 

Wednesday, March 15, 2017

It's So Good To Be Home

Mom and Dad were here for nearly 6 weeks.  It is always so wonderful to have them here.  Dad has told me that he likes to be busy when he is here.  He has never been one to sit around and I'm glad that I can keep him busy.  I love the additions that he puts in my home.  It feels like my home is finally mine and almost perfect, except for the backyard, that's another story for another post.  And another project that isn't on my radar for a while.

When dad was here in September he put up the cabinets (which were free because the cabinet people never came to pick them up even though I called them at least 5 times) for my entertainment center.  It looked pretty blah.  But now it is complete with shelves, a bead board back and a new, much larger TV.
I found a design with instructions for my mud room.  It just seemed like an empty room, but now it welcomes me home each day.  Dad put up the wall paneling, which I love and mom found this awesome European, very heavy bench at Homegoods.  It saved dad from having to build me a bench. 
When I was home a few months ago I made this sign and just put it up on Sunday.  I love it.  I have full intentions to stain the frame, but it hasn't been done and I don't see it happening anytime either.
 
Dad put some bead board under my bar in September.  The bar has needed some bar stools for the past year.  I've had a hard time finding some that I liked.  Well I just happened to drive by a second hand store and lo and behold they had a set of 3 for 89 dollars.  Total Steal!  I was so happy that I backed into a yellow pole.  And now those bar stools will cost me 589 when I get my little dent and new yellow paint color fixed.  Grrr.
Dad put bead board up in the rest of the family room.  I love it.  This room is so big and needed something.  Mom also switched the furniture from the front room.  I actually like it better.  I also love that I have some white in this room instead of the walls all being the same color.  I had full intentions of getting a wall painted, but that didn't happen.  I got this darling secretary desk from some friends of mine who inherited it from a friends uncle who passed away.  I've been wanting one for a good while and love the size of this.  I had originally put it in my craft room, but it ended up here, which is perfect.
Lauren came from NC for 10 days.  Aside from seeing me, her goal was to come create and organize my craft room.  I don't know many friends who will leave their 4 boys at home and come clear across the country, especially when she is afraid to fly and spend a few days organizing, painting and perfecting my craft room.  It's exactly what I wanted it to look like.  In addition I found some fabulous very gently used Land of Nod furniture from a lady down the street.  I had no intentions of turning this into a bedroom, but I absolutely love it.  We stopped at an antique store in Chandler one evening and I found the exact quilt that I wanted on this bed.  Lucky me it was 40 percent off.  And how often do you see such cute pillows that say, "Hello There Handsome" and on sale!
 This mirror was my grandma Young's.  I love it in this room and so happy I finally got it up.  The desk top I found in my garage, left over from the cabinets.  We got the legs at IKEA.  Can you see the little suitcase?  It was my grandma Jeanne's.  I love the addition that it brings and it is also great for storage.  I also love the shadow box that I found which houses some of my special hankies.
I would never have thought to put a lamp above the bed.  Lauren's idea=brilliant.

I love the few additions to my other guest bedroom.  It's amazing what a new lamp shade will do to a room. The beach picture in the corner was painted by a friend of mine and I found the perfect frame for it.

Tuesday, February 28, 2017

Grandma Betty Visits

Grandma Betty, Marne and Tim were in Phoenix in early February.  They came over for breakfast on a Sunday morning.  It was so fun to have them visit my home for the first time ever.  Tim taught me to make Ebelskivers when we were visiting them in August and so I made some when they visited.  I picked a recipe that was different from theirs and they loved it and so do I. 
Aunt Pearl also visited Phoenix this winter.  Aunt Pearl is in her 90's.  She looks fabulous.  When I was in elementary she worked at my school.  We formed a special bond on the playground.  We had dinner with her and her daughter (my dad's cousin) Julie.  It's always fun to see these amazing women who I've always loved and looked up to.
Ebelskiver's are a danish pancake ball.  You have to have a special pan to make these.  Buy one that has teflon.  They are delicious, fun and different.  To turn these I use a small (like number 10) crochet hook.
Ingredients
1 1/4 cups flour
1/2 tsp salt
2 1/4 tsp baking powder
2 T sugar
1/2 tsp cinnamon
1 egg, beaten
1 cup milk
1/4-1/2 cup butter milk
2 T butter melted

In a bowl add sifted flour, salt, baking powder, sugar and cinnamon.  In a separate bowl combine egg, milk and butter.  Combine all ingredients and stir until blended.

Over medium heat, fill each cup approximately 2/3 full with batter.  Cook for about 30 seconds or until brown.  Turn each ball with a crochet hook so it forms a semi-circle.  When this side is cooked turn one more time.

Top with lemon curd, lemon juice, powder sugar, nutella, blueberries, whipped cream or whatever you have on hand.

Monday, February 27, 2017

Colleens Dream Weekend

Thursday I was up bright and early to have infusion.  I've had back pain for several weeks, the kind where it feels super sore in my lumbar spine, which is different than the tailbone pain.  I've also been having constant numbness to my right anterior thigh.  It was decided at treatment that I will have a ct-scan a few weeks earlier than thought.  I'm hoping it's nothing, even though it is obviously something.
After treatment we picked Nick up from the airport.  Erin, Tony, Nick and I then went to the VIP Colleens Dream party.  It was super fun to people that I've met the last few years. Billy Cundiff is pictured on the right.  He is the kindest man.  I'm so grateful for him and Nicole and the entire Colleens Dream team who spends countless hours working to raise money and awareness for OVC.
Friday morning was the golf tournament.  I look forward to this every year.  It's fun to check people in and feel the excitement that a bunch of men have to golf for such an important cause. The view and weather was gorgeous, despite it was slightly cool, but perfect.
Johnny Hecker is so friendly.  It was so nice to visit with him.  I keep promising him I'll see one of his games and I haven't.  Next season for sure.

That night we picked up my Uncle Stuart and then met Leslie and Gordon for dinner. 
Saturday Erin, Mom and I got pedicures.  I also got a sweet freezer for cheap.  We got ourselves all beautified and then headed to the Gala.  It was beautiful as always and so much fun.  Billy talked about me in his speech, how even though I have cancer I continue to live and enjoy life.
I won a silent auction OVC quilt, which is beautiful.  I'm so grateful for everyone donating their time and money for a cause that I live with every day.  Talk about pure unselfishness.

Thursday, February 23, 2017

One Big Disneyland Post

 The last time we went to Disneyland I got tickets from getawaytoday vacations out of Ogden.  When I learned of the price increase I remembered how great a company they were to work with so on my way home, in the middle of rush hour traffic I called and talked to Courtney who I had worked with before and who remembered me from 2 years ago.  She quickly hooked me up with the old ticket prices that were actually a little cheaper than my work could offer me.  I was happy this all worked out for my budget. 

We got out of town pretty well except for a little stop and go traffic on I-10 out of Phoenix.  On our way out of town we realized we were hungry and of course had to stop at a local Taco Bell.  I don't know why we can't just leave and call it good without having to always stop, but we do.  We finally got to our hotel around 11pm.  When I opened the door to the room they gave us, it was like on the 3 bears story, someone had slept in the bed, so we called down and they got us another room.

Wednesday we woke up to a lovely spring/winter day!  Troy and Tyler's families flew to LA and rented a 15 passenger van.  Let me tell you, that came in handy.  When I drove it a few times I felt like I was driving the getaway van.
 We all arrived at our vacation home, which was the same as when we were there last time together.  We like this home.  It is comfortable and very close to Disneyland.  We went to Disneyland for the rest of the day.  The crowds were light, which is always so nice.  Tanner and Kayla flew in that evening.  By the end of the day we were all kind of tuckered out.
Thursday we went to Disney's California Adventure.  It was so fun to have my friend Erica, who I use to work with in Charlotte, join us for the day.  Tony and Erin joined us Thursday evening.  There was a total of 20 of us for a few days.  Such fun!
Friday it rained all day.  I stayed home with the babies while most everyone went to Disneyland.  They all returned just before dinner, changed into dry clothes and then we went to dinner at Mimi's.  Tanner and Kayla braved the downpours and went back to Disneyland that evening.
Saturday we went to the beach.  It was chilly and windy, but the kids didn't care one bit.
We also hit Costco and stocked up on more food.  I tell you it's amazing how much food families go through in such a short time.  I loved that the boys took care of most of the breakfasts.
They even did some clean up of the kitchens too.  One of the things I like about going to Disney is making lunches.  It is so much cheaper and easy. 
Sunday we were able to watch mom and dad's stake conference.  Technology is so amazing.  We then piled into the van and headed to San Diego stopping at the temple, which I've never seen in person and always wanted to.  It is absolutely beautiful.  We then spent a few hours at the Mormon Battalion visitors center.  It was awesome and the kids loved it. 
That evening my cousin Misty and some of her kids came over for ice cream bars.  Most of her family were at Disneyland the next week. We thought we had a lot of people, but they had 25. 

Monday some went to Universal Studios and some to Disneyland.  I went to TJ Max and had a Terah day.  My back has been hurting and I wanted to rest up for Tuesday when we were all going back to Disneyland together.  Monday evening Becky and I went to this awesome ice cream place.  They make ice cream with dry ice and they design it into a rose.  It was delicious and so creamy.
Tuesday we had so much fun at Disneyland.  The crowds were heavy, but it was fun nonetheless.  We even got a big group picture with most of my cousins, (when I get the picture from Danielle I will post it) even though Misty and I could never find each other that day.  I even ran into my friend Darin who I've been friends with since I was a very small kid.
Yesterday we cleaned up and checked out.
 Every day when the kids are good they get to open the treasure box to find treats, games and Disney paraphernalia.  Its fun for them and me.

Everyone except Tony, Erin and mom and dad and I left.  We went back to Disney CA.  We met Misty and her kids there.  They showed us the animation center, which I had never known about.  It was super fun and fun to see her there. 
She is going to Hawaii the end of May with 2 of her kids and invited me along.  I'm pretty sure I'm going to go, of course pending my treatments.  We left last evening to head back to phoenix, getting in around 2am this morning.  I love Disneyland and the magic that comes from it.