Poppy

Last Monday I saw the urology oncologist who I fired.  He has horrible bedside manner and has never done an exam, although he has charged me as if he has.  Kaycee and my mom were with me at my appointment.  I told him that I wanted to have the stint removed and to have an nephrostomy tube.  He had the nerve to tell me that I have metastatic OVC and that I was eventually going to die.  I practically had to pick up Kaycee's jaw as it hit the floor when she heard that.  Really!  Nurse Pat informed us this week that she will be retiring in October.  This will be a very sad day.  She is sometimes challenged to get blood from my port, but always seems to get it working.

After that decision was made we enjoyed lunch on the patio.  I love this friend of mine.  It's always fun to catch up with her. 

I got my own wheelchair this week.  The pain in my lower back is so intense when I stand or walk.  I was hoping an injection would cure this, however I had it done last Friday and didn't feel any different.  I can't even go on a walk.  I'm in pain to stand to do my hair, put on my makeup and to brush my teeth.  I did have a massage through MSTI which did improve the symptoms for a few days but then the pain returned. 

Monday I got my new back jewelry.  I've named it Poppy the pee bag.  The stent broke when they tried to remove it so today a new urologist removed it.  He was so kind and saw me this morning and did the procedure this evening.  Thankfully I have no more discomfort from the stent!  In fact I feel fabulous Poppy and All! 

Because there is a large tumor surrounding the left kidney, they had to place the nephrostomy tube in the top of the kidney by going through the lower ribs.  This has caused some drainage from the chest cavity, which I've had to go back and forth to the hospital to get it stitched and taken care of.  We spent more time in and out of the hospital and Dr.s offices since I've been home.  Hoping for a break.  One day that I was getting things worked out, we ran into Dr. C.  I sure love her!  She was my surgeon when I was first diagnosed.

We've also spent the last few weekends watching Gavin play baseball.  He's getting pretty good at this sport.  It's been a little chilly and rainy here, not how I like starting my Summer. 

The kids came home this past weekend for Father's Day.  It's always fun to be home together.  Mom needed groceries for when the kids came home, so she put me in a cart at the super market, because I haven't been able to stand without pain.

Shaved Ice Super Sunday

1.  If you have forgotten, let me remind you that I love shaved ice and the sun.  So when you put them together, it makes for the greatest day!  Twice this week I spent the afternoon in the Sondrups pool and after eating shaved ice.  Remember in the Fall when I won a $300 gift certificate from Amazon?  Well, I finally used it on this amazing shaved ice machine.  It's seriously the real deal!  If I'm not already the favorite aunt, I'll surely be when I bring it home next week!

2.  I had an MRI on Thursday and Dr. D called me a few hours later with the results.  We finally have an answer to the back pain, which actually was shown on the MRI last year, but it's worse this time around.  And it's totally non cancer related, well it sounds like it, but I'm sure the chemo and radiation have helped cause it.  I have a narrowing in the spine between L5-S1 which is making me crazy.  I seriously can't do anything without pain...that is until yesterday.  Since learning of this news I've been doing specific stretches daily; basically Dr. D said I needed to go to physical therapy, but I can do my own, plus I went to one in February.  Yesterday I went and had a massage at the massage school.  The guy was totally new, but did a fantastic job.  And for the first time in literally 6 months, I can lay on my back without pain.  I even tested it today again when I took my nap.  No pain with laying on my back, side or abdomen, well maybe just ever so slightly during my nap.  And I can even stand a little longer than the 2 minutes it takes to brush my teeth, even though I totally have to lean into the sink to take the pain away a little.  Spinal Stenosis is actually an old persons disease, but it makes since, since my body feels like I'm at least 80.  I considered not taking pain meds today and I've actually only taken 1, but I'm pretty sure the massage, prayer and the stretching have been my answer.  I'm probably going to get a steroid injection with the hopes that it takes all of the pain away.  If the pain continues, there is always the option of a little surgery, but hopefully that won't be needed.

3.  I actually called Dr. Dan's nurse earlier this week and told her I needed a prescription for a wheel chair.  I mean, I will be traveling a lot this summer and I certainly haven't been able to stand long, let alone walk.  But after a steroid injection, I just might be back to my normal...well that is if I didn't have this stent pain.
4.  Speaking of traveling; I've booked an Alaskan Cruise for mom, dad and I and also a trip to see the Boston Red Sox play on the East Coast and to visit Philadelphia, which I've never been to.  I'm leaving this week to go to Tristens in Spokane, then to Boise for the stent exchange, (this stent is going to be the death of me.  Although I did read this week that I they can do reconstruction on it, take out the tumor and the stricture and then I'd be good as new.  I just have to find someone who can do it.)  Then it's off to Marne's Beach house in Seattle and then back to Boise.  Oh, and lets not forget my return to visit Martha's Vineyard the end of August for a week of beach fun with my MVY friends!  So many places to see and only so many Summer Days!
5.  Have you read, 1000 White Women?  I'm reading it as the start to my Summer reading program and it's so good!  I have a stack of books to read this Summer and a few lists to read in my lifetime.  There are so many good books, that when I'm reading one that isn't so good, I've learned to stop reading it and not waste my time on a bad read. Oh, summer reading how I love thee!
6.  I had a lovely lunch date with my girlfriends this week!  Even though I still can't eat much, I still enjoy a lunch date.

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.

Colleen's Dream Weekend

This past weekend was fabulous as it always is!  Mom, Dad and Nick flew into Phoenix on Wednesday.  Well, Nick didn't really get here until almost midnight, but he got here.  Thursday mom and I got pedi's and mani's.  Nick and I attended the VIP party which was super fun and enjoyable.  It was so fun to see my friend Brittany from camp. 

Tony and Erin flew in late Thursday night.  Friday morning we were up bright and early for the golf tournament.  It was cold and windy, but when the sun came out behind the clouds it wasn't as cold.  However, by 1pm I'd had it with the cold and we left.  I always love that I get to check in all of the golfers and to thank them for coming, because I have so much gratitude for their support. It was so fun to see my friends from camp! 

Nick and I went to the Apple store where I bought a new phone.  Friday night we had dinner at Aunt Leslie's and we played a fun question and answer game.

Saturday we went to breakfast, I took a nap and then we all got ready for the Gala.  It was a beautiful evening.  My friend Brittany was the keynote speaker and did a fabulous job.  The live auction/after live auction alone raised nearly $300,000 for OVC research; specifically for a study at Tgen, which I hope to be able to qualify for.  I'm always amazed at the generosity of individuals and their support for a disease I live with every day.  Dr. D my gyn/onc was there and we had a lovely chat with her.  Our friends the Sondrups also joined us which was super fun.

 This is Dr. D.  She is fabulous!

Today Tony and Erin left after church.  We had lunch with Laura and Jessie's family and then Deb and her kids came for dinner.  It was a fabulous weekend, which I always look forward too.

2017 Taught Me...

In 2017 I learned that my cancer will likely never go away.  As much as I pray and hope for the miracle I want, it just isn't happening.  And maybe I should not use the word never, but as a medical provider I can clearly see and understand what is going on.  The CT report I had the day after Christmas said, "Progressive Metastatic Disease." Definitely not what I ever thought I'd be reading when I read my reports, yes I read them and I understand them.  Sometimes it's a little scary and it makes me a lot tearful, but I read about all of the growing tumors reported and realize I'm so blessed that they aren't causing me more problems and pain than they all ready are.

In the Spring of 2017 I learned that it's ok to take a chemo holiday and to stop all cancer related medication's, to give my body a break and to start fresh with another one in July (that didn't work either).  I've learned to adjust to new medication side effects, while becoming more grateful that I can function on a normal work day, because of few medication side effect from oral chemo/antiestrogen treatments. (My new treatment, Tamoxifen; let's hope this one works.)

I shed more tears in 2017 than any other as I lost 4 dear friend's from complications due to this disease which still has no preventative test, making for those diagnosed in late stages, little chances for an extended life.  I miss these ladies fiercely and feel a huge void in my life, especially my friend and co-worker Kendra.  Not a day goes by, that she doesn't enter my thoughts.

Due to a short 3 weeks on a parp inhibitor (that made me crazy sick and made me miss a week in Sydney) in 2017 I kicked my twice a week Circle K coke zero habit and decreased my sugar intake secondary to one of the medication's I'm taking now!  But I'm not going to lie, I also discovered Andy's frozen custard down the street, that I can buy by the half gallon and pare with frozen raspberries!

Unfortunately in 2017 I lost most of my muscle mass given a pretty steady resting heart rate of 165 and some major shortness of breath with any exertion.  I also became severely anemic and developed some awful lower extremity edema.  Thankfully this has mostly all improved thanks to a few units of blood and a kidney stint, although we are watching this ever so closely. 

During the last 2 months of 2017 I learned to adjust to having a ureteral/kidney stint which is most uncomfortable, but at least it will give me more time without having a tube in my back or having to remove the kidney all-together.  I've learned to adjust pain medication's when the tumor on your left kidney grows bigger and starts making you feel like you've been kicked in the flank.

2017 brought me new friendship's, some of whom fight the same fight I do, who understand exactly what it's like to live with a scary disease that can potentially take your life whenever it wants to.  I developed some of these strong and wonderful friendships', as well as cancer survivor skill's by attending 2 different OVC survivor camps.  This allowed me to mingle with other strong, resilient women, some who have lived with this disease for many years, some who've been in remission for many years or just a few, but also those who were newly diagnosed. 

2017 taught me about hope as I listen to my family and friends pray for me.  It's most humbling to hear a niece or nephew pray that Auntie Terah will have strength in the same prayer they are saying while blessing the food.  I learned even more, that no matter what you do and no matter what your job is or what your life looks like, we've all been so uniquely and strategically placed where we are in our communities, in our homes and in our families for a reason.  

2017 allowed me to check off two more continent's on my bucket list; Asia and Australia.  It allowed me to enjoy vacations in Seattle, Charlotte, New Orleans, OKC, Montana, Destin Beach, Milwaukee, several trips to Disneyland and home to Nampa.  2017 brought me ton's of girly laughter and memory making while on girl-trip's or just sitting around a kitchen table visiting and sometimes crying with my incredibly talented, compassionate loving and supportive girlfriends.  Each year I live I'm more grateful for the special friend's the Lord has placed in my life.

2017 was similar to the past few year's with the same pain, the same struggles, the same hopes, but also the same fears and the same tears.  It is my hope that 2018 will bring me new courage that has come from year's of trying again and again.  I'm past wishing for my before cancer life, instead I'm creating new hopes and new goals while living my present life.  I'm celebrating each new day, just how I am and wherever I am.

I want to be kinder in 2018, with a child like love to all I interact with.  It is in being kind and having charity that we truly serve our Savior.  I want to be more like Him, to learn more about Him; to look for ways to serve other and to bring happiness and joy despite the negativity that surrounds this world, for this is what He taught and what he would do.

And when I'm home in 2018 I will continue to hug my nieces and nephews fiercely when they walk in and out of my parent's door.  And I will keep asking them to stop growing, they are getting too tall.  Oh, what I would give to freeze time.  My nieces and nephews are so perfect and at the perfect ages right now (10-nb).  I will keep loving their drawings and cute letters telling me they love me all the way around the moon and I will treasure the cuddles and laughter we will share.  If there is one thing I hope to leave these little ones it is to have courage in the face of fear and uncertainty and to have a firm, unwavering testimony of the gospel of Jesus Christ and a faith in our Heavenly Father's love for us His children.

In 2018 I'm hoping to develop exceeding faith in the plan that Heavenly Father has layed out for me.  I will continue to pray that His will, will become my will if they are different.  And I will for sure work on this goal of letting my faith be bigger than my fear.  (I found this and had to buy it this week).

I still have hope that there will be a medication that will shrink and stop my tumor growth so that I will have more time to grow my character and spirituality, to make more memories with my family and friends and to see more of the beautiful world that has been created for me to enjoy.  And if the road is a bit bumpy, I'll for sure shed tears of sadness and pain, but I'll also try my best to face the adversity I've been given the best that only I know how.

In 2018 I hope to develop more friendships, forgive and be forgiven, laugh a lot more and cry less.  I hope to gain back at least some of that muscle I lost, hike more mountains, take more walks and ride more bikes (or just take more spin classes.)  I want to enjoy every moment I can in my backyard come 2 weeks when I have a backyard makeover, while I swing on a swing with a book in my hand.  

So in 2018, I'm going to cheer with joy when I get to be the provider, instead of the patient, even if its flu season and I have to wear a master mask crossed eyed!  Did you know that I love my career?  I do!  And I'm so grateful that even among the low white counts and the discomfort that I have at times that I can turn my focus on others and away from myself.  And I've been blessed with an incredible gifted immune system; I very rarely get sick...knock on wood!

I don't know what I will learn in 2018.  I don't know what challenges or experiences lie ahead.  But what I do know is that I've been given an incredible medical team in Phoenix, Boise, Boston and Houston.  I pray that they are guided to the best treatment for me.  I plan to continue to rack up those frequent flier miles traveling the world and visiting loved ones, even if it means I have to inject a little heparin in my abdomen before I board a cross country flight.

PS...In the next month or so I promise mom, I'll get my trust finished so that you won't have that worry at least about me having my affairs in order.  And the cookbook, yep it's still in the works.  I've been a little lax, but I'll get it finished someday I hope very soon!

Crazy Cancer Update

Last time I was home I of course had to incorporate into my time there my quarterly ct-scan and visit with Dr. Dan.  Friday morning my visit wasn't what I was expecting.  Well, some of it was like when Dr. Dan told me that most of the tumors had grown between 3-6mm, but nothing worrisome.  There was even a small tumor that has resolved; I think it's the one that was radiated that was superficial on my pubic bone, because I can't feel it any longer.  The tumors in the left lung remained the same thank goodness. The concern was the left kidney, which had severe hydronephrosis (fluid around the kidney).  Dr. Dan was afraid that if we didn't take care of this asap, I'd lose the kidney.  I was complaining of my heart rate being 168 by just walking a few steps from the waiting room.  My heart rate has been up for months and then I felt like I couldn't breath with any exertion.  I also have had horrible swelling in my legs, which is very uncomfortable.

Dr. Dan got me an appointment with the urology oncologist for Monday morning.  As I was making my appointment with Dr. Dan for December, the urology nurse called up and asked that they draw some blood and run some tests.  It is always fun to visit the nurses in the chemo suite, which is where they access my port.

Mom and I then headed to Great Harvest Bread (our tradition after each visit) and  Tj Maxx, well, I was in the car talking to Nick and mom was shopping.  While there, Dr. Dan's nurse called to tell me that I needed to return because my hemaglobin was 6.8.  It's suppose to be over 12.  They thought maybe it was a mistake so they redrew it and in 3 hours it had gone down to 6.  This bought me 2 units of blood.  Of course it took forever so I only had one on Friday and one on Saturday.  I seriously thought I was feeling rather well, but after 2 units I had a normal heart rate and more energy.

While sitting for hours recieveing strangers blood, I thought of how unselfish it was for someone to donate their blood to make me better.  I had to go up to the oncology floor to have the transfusions.  It was so wonderful to see the nurses who took care of me 4 years ago.

Monday I was very upset and tearful when the Urology Oncologist Dr. B. told me I'd have to have a ureteral stint placed to be in until the tumor pushing on the ureter resolves.  I was not happy with this news in the least bit.

After my visit with him I met with the social worker and the financial/health insurance lady because I'm concerned about what to do when my cobra runs out the end of April.  We talked through things and I felt much better and reassured by the time I left, well about the insurance, not the tumor.  When we left St. Lukes, I started vomiting.  I've only had this happen one other time because I was upset and it was the day I had surgery to remove the cancer.

Halloween Day I had the stint placed.  I also had an xray of my left hip because I've had so much pain in that leg and hip.  I was for sure I had metastisis to the bone, but another visit with Dr. Dan on Wednesday showed that the bone is normal.

The stint has caused me so much discomfort for nearly 2 weeks.  There are times I wanted to rip someones head off.  Thankfully I've figured out to take bladder spasm meds every 6 hours which gives me some relief.  I really thought that they were going to have to remove this and put it into my back, but the last few days have showed me that I can handle it.  I'm praying specifically that this tumor will resolve quickly.  They will have to replace this every 3 months until it does, which means a minor surgery.

The only good thing from the stint is that the fluid I was retaining in my legs has resolved, so much so that I've lost 7 pounds. Dr. Dan did some research and said that there are some cases that severe hydronephrosis can cause anemia.  I'm staying on this antiestrogen pill for 2 more months and will have a repeat scan around Christmas.  If tumors are still growing, we will try a chemo pill.  I'm trying to keep my head up, but I admit, there have been some days the past 2 weeks that I've been quite emotional and had some fear.  But I've cried those tears and am feeling much better.

There is a general conference talk from Oct. 17 that has really hit me to the core.  It's entitled Turn to the Lord.  In it the speaker shares this quote from Elder Oaks which has really helped me this week, "Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best.  Sometimes a healing cures our illness or lifts our burden.  But sometimes we are healed by being given strength or understanding or patience to bear the burdens placed upon us." 

 There have been times recently that I've wondered if God is listening to me or cares about what I am hoping and praying for.  I wonder sometimes if He has forgotten me.  And then in my scripture reading I read this and I am assured that yes, He hears me and He hasn't forgotten me.  I'm trying to turn my will to His, but it takes a lot of faith to do this, especially when we don't know His will.

 I went to the temple this week and read the words, In Every Thought, Doubt Not, Fear Not. I also started reading Neil Marriotts book.  I love what she says in the introduction, "How do we make the Lord's ways our ways?  I believe we begin our search by learning of Him; going to scriptural sources, studying with an open heart and mind, and praying for understanding.  As our trust in Him grows, we seek to do His will, and we search for answers that will help us understand His doctrine.  As we learn and act on His doctrine, the grace of God will abide in us...He will be with you in all your circumstances, and especially in your hardest moments, when it is all you can do to endure.  He wants you to live a joyful life, and He makes that possible for all who follow Him with a yielded, obedient heart."  And so it continues. 

I won a contests at work this week.  I never win anything!  We were suppose to share pictures that brought us happiness.  I shared this photo with the caption that said something like, "Happiness was working a few days a month.  It's time that allows me to forget my diagnosis for a short and take care of others."