Miracles

 I had chemo on Friday.  My kids worked with friends and surprised me with balloons, Crumbl cookies, and tulips (thank you Utah elves for carrying out their surprise--Hoosier friends forever). Scott & I had Red Iguana for our date night meal.

Yes, I'm lactose intollerant, and yes, I enjoyed the cheese!

Saturday night and Sunday were the times that many friends and family were praying and fasting for my family.  Sunday was a beautiful day.  I’m not sure how it all works, but I definitely felt the prayers powerfully.  I’ve been in control of my emotions and able to speak to others about my situation with complete composure.  I feel empowered and know that God is gifting me with this ability due to your prayers and fasts.  It is a miracle, and my heart is full of appreciation for the privilege of feeling heaven surrounding us. I know that Scott has also felt strength through your prayers.  

My chemo drug is called Trodelvy.  According to nurses, it is less harsh on side affects than the drugs used for my treatment 13 years ago (Adriamycin Cytoxan, and then Taxol).   They include some anti nausea drugs and a steroid with my chemo, so I didn’t need to add any other meds until Monday, when my body was on its own.  So far, I’ve felt pretty close to normal.  I’ve lined up friends to walk with each day, which has been a blessing both for my physical and mental health.  

This Friday, they will add in an immunotherapy drug called Keytruda. I’ll have chemo Friday, Friday, skip, Friday, Friday, skip, …..for as long as we are getting desired results.  Then they’ll look at other options.  Since this is considered a terminal diagnosis, the goal is to find the right balance of QTWST, quality time without symptoms or toxicity.  If I have any trips that interfere with treatments, I can skip for a few days and then start up again as soon as I return.  We are hopeful to buy years, not months. 

We are living as if we have months–meeting up with friends that we have meant to gather with for years.  It is a sweet way to live that I recommend to everyone.  

This is a favorite song the children at church sing. I love my Savior and am so thankful for Him and the peace he gives me. https://www.youtube.com/watch?v=zZ2djzQ9J64

The Plan

The quick update:  chemo starts tomorrow!  

We met with our oncologist Tuesday morning.  It has taken a few days of adjusting to the news before I could post this publicly.  My cancer is a recurrence of breast cancer, in a different, yet nearby area, which makes it Stage 4.  This round it is triple negative breast cancer TNBC, which has less options for treatment.  It is inoperable because the masses are spread out and infiltrating the surrounding tissue.  The hard and sobering news, that was especially hard to share with our kids, is that the average life expectancy with this diagnosis is 2 years.  We are hopeful that chemo will shrink the tumors and hopefully ease the nerve pain in my left hand, or at least stop further progression if the nerve damage is permanent.  (Please appreciate that every a and s has to be stroked with my pointer finger!) I appreciated knowing the reality of what I'm up against, but also know that I'm not your average cancer patient.  I have hundreds of prayer warriors out there (thank you everyone), a great support network, and the most compassionate, kind and loving primary care giver anyone could have (he's been the love of my life since I was 14!)  I'm expecting a lot more than 2 years, but planning to live as if I have less than 2 years--making careful and wise decisions about my priorities, and hoping to fight through feeling badly to not miss any important moments.  

We have been blessed with some great news.  My cancer tissue was tested for PD-L1 and it was positive, so I can add in immunotherapy, which is a huge plus.  I've heard of people living many extra years due to this treatment, so that is really encouraging!  

Also, our Bishop and his wife came by for a visit last night, prayed with us and for us, and asked permission to invite our church family to fast for my family this Sunday.  On the first Sunday of the month we always skip 2 meals and go without water and give the money we would have spent on those meals (or more) to help those in need.  We fast with a purpose, and pray for that purpose and focus on that, so when you get hungry, we instead think about God and the blessings he has given us, and think about the person or purpose of our fast.  So I feel so humbled and blessed to have a church family to support my family in such a beautiful, sacred way.  All of your prayers are strongly felt.  I'm feeling very positive and optimistic, and also very composed.  I have only cried a few healthy times.  Reading this diagnosis warrants a negative reaction, but I feel surrounded by strength, love, and optimism.  It's going to be a beautiful journey!  

Beautiful winter sunset that brought me joy.

Celebrate Happy!

 The quick update:  We are still figuring things out, but getting closer to a treatment plan.  

I met with the orthopedic sarcoma specialist at Huntsman on Monday, Feb. 9th.  They said we need to know what kind of mass is wrapping around my brachial plexus.  A muscular skeletal specialist did a biopsy of that mass on Thursday, Feb. 12th.  It was perfect timing, because we could await results while we played in California. 

I met with the sarcoma specialist at City of Hope in Los Angeles on Monday, Feb. 16th.  He went over lots of potential procedures and answered questions.  It was so kind of  him to work me in on short notice and spend a lot of time discussing a still unknown type of cancer.  On Thursday the 19th, the pathology report came back from the brachial plexus area.  This biopsy had plenty of tissue to confirm more things.  Both masses are the same kind of cancer, and instead of sarcoma it is carcinoma, and is a breast cancer, though not in the breast.  From the previous pathology report, we know it is negative for hormone receptors.  My previous breast cancer was estrogen and progesterone receptor positive, so hormone blockers helped keep that cancer away for 10 years after chemo and radiation. Hormone blockers won't help this time.  We are awaiting results to see if it is HER2 positive.  We meet this Tuesday, the 24th, with my oncologist to discuss what type of breast cancer this is, treatment options, and a start day-- I'm hoping later this week.  

We had a wonderful trip to Southern California.  Kirsten drove me to City of Hope, and joined in for my doctor's visit.  We were so impressed with everyone we interacted with there.  Everyone was so friendly and helpful.

Courtney's family flew in Tuesday morning, and we all drove down to Disneyland.  Scott flew in and joined us after work meetings. The theme for Disneyland's 70th birthday is "Celebrate Happy!"  That seemed like a great theme for our family too.  We had a great time both at Disney and Kirsten's home.  

Gratitude for Nerve Pain

This week brought a few more answers. The quick update is I had the pet scan, and it ruled out any spread to major organs.  We are still awaiting biopsy information. If you want more details, keep reading. 

We continue waiting for answers and clarity on what kind of cancer/cancers we are dealing with.  I was able to schedule the pet scan for Thursday, by going out of the Huntsman Cancer Network, to Revere Health Imaging in Provo, an hour away.  Huntsman's soonest availability was the 24th, and then the 11th, which was still too long to wait and wonder.  The PET scan gave us peace of mind, knowing that the cancer was not spread to any major organs, and is all located in my upper left area, somewhat close to my breast cancer 13 years ago.  There are a couple more spots showing, but in the same general area.  

The biopsy report has taken a lot longer than expected.  Finally, on Thursday, one week after (and after my daily inquiries since Tuesday), my oncologist called to explain the delay.  The mass they biopsied has a different shape than breast cancer recurrence usually has.  It appears more like a type of soft tissue sarcoma, but there are several different kinds of those.  They may need to take more tissue samples to determine more specific answers.  They have now added in an orthopedic cancer team, who will discuss my case during their conference meeting on Monday, and then they will see me afterwards.  The breast cancer team will discuss my case on Thursday.  They may need to take more biopsy samples.  

I've had increasing nerve pain in my left arm, especially in my pinky, and a bit with my ring finger.  It is hard to do buttons, snaps, tie bows, squeeze out toothpaste, and other tasks I took for granted.  This has been going on since October, with more pronounced discomfort as weeks have gone by.  Though the nerve pain and loss of strength and dexterity has been bothersome, it has been a huge blessing because it triggered further investigation, which led to the discovery of the mass in my soft arm tissue.  It is deep in the tissue and not a place that I nor my doctors would check during breast exams.  It could have grown to a much greater size before being noticed.  Now, we can address it in its smaller size.  Another little  miracle, when the doctor told us it may be a soft tissue sarcoma, Scott called Weston, our son-in-law, who is a surgeon at City of Hope in California.  He was at a Mayo Clinic Conference and had just left a class on Sarcomas.  He eased Scott's fears, saying that in the last couple of years, major advances have been made in treating sarcomas.  Another great blessing is that he works for the #5 best cancer hospital in the country.  He set up a consultation with their sarcoma specialist, when I'm in California. 

When people used to win the super bowl, they used to answer the question, "Now that you've won the Super Bowl, what are you going to do next?" The answer was always something similar to, "I'm going to Disneyland!"  I'm about to start another big battle, and to kick it all off, "I'm going to Disneyland!"  I'm so thankful that I can make fun memories with some of our grandchildren, and their parents.  It will be great!  

I'll send updates on treatment plans as soon as we know more.  I feel the strength of all of your prayers.  I feel emotionally and spiritually strong.  I feel of your love and God's love.  It is amazing. I give all of the credit to Jesus.  He has experienced everything that we will ever face and knows how to succor us.  Philippians 4:13 "I can do all things through Christ which strengtheneth me."

The Gift That Keeps Giving.

It's been 13 years of fun and adventure, with very few posts to this blog.  But it is now time to update this blog with some new adventures with cancer, the gift that keeps giving.  Way back when I first went through breast cancer, I was told that my type often recurred down the road.  I'm constantly doing breast checks for any changes, and recently had my annual mammogram, which came back clear.  

In July, I started having some swelling and discomfort in my left arm.  I soon realized that it was lymphedema, the condition they cautioned me to look out for after my surgery.  It had been 13 years, but they said it can flare up at any time.  I called my oncologist and shared that I thought I had lymphedema and they connected me with their lymphatic massage physical therapist.  I started meeting with her once a week, and as time went on, my arm started feeling tighter and tighter, with pain as I stretched it.  Over time, my pinky started going numb and losing control.  Finally, my PT said my type of pain was not normal for lymphedema.  She tested my strength and said my left arm was significantly weaker.  She shared that she thought I needed to see a neurologist.  I had to have a referral to see one, and their wait list is about 4 months long.  

My oncologist said "Let's see what's going on before we  send you to neuro."  They did x-rays of my neck, spine, and hand; then did a vascular ultrasound to see if I had a blood clot.  There was no blood clot, but he found a vascular mass in my arm, near the arm pit--a mass about 1 inch wide and tall that has its own blood supply.  That triggered an MRI scheduled a week later to check the mass, and then an additional MRI to check out the neck/shoulder area the day before.  Both scans together show that I have an ill-defined.  infiltrative, heterogeneously enhancing mass encasing the left brachial plexus, highly worrisome of malignancy, approximately 4x3.3x3.7 cm.  I also have a 1.9 cm mass within the lateral deep soft tissue of the medial mid arm.  They are scheduling a biopsy so they know the type of cancer they are fighting.  I meet with the radiation oncologist Thursday morning.  I'll have a biopsy after that.  They've scheduled a PET scan to make sure there are not other areas affected.  I'll update this as I learn more.  

To the handful of people who knew this was going on, thank you for your prayers.  I feel strength and comfort from them.  

Green Tea Spray and Turmeric Prevent Radiation Burns

It seems almost monthly, friends message inquiring about the green tea spray I used during radiation.  To save all of us time in looking this up in my Radiation post from November 2012, I'm adding it here.  Today, Sept. 1, 2018, googled "green tea spray to prevent radiation burns" and found posts about other radiation oncologists having their patients use a green tea spray.  I'm so sorry that ALL radiation patients are not informed about this.  It makes a HUGE difference.  I did not burn during my 30+ treatments of radiation.  I had some "tanning," very slight redness, but no blisters or burn pain.  Below are the instructions for Green Tea spray.  My radiation oncologist was Dr. Minor, through Indiana University Health System.  She was one of my top two favorite doctors through my process.

GREEN TEA SPRAY to prevent radiation burns.

Before starting radiation, I was given advice for foods, vitamins, and products I needed to avoid, and also things I needed to take or use on my skin to lessen the affects of radiation.  My doctor was involved with a group at Indiana University doing a study on the use of green tea, sprayed onto the radiation area several times a day throughout the radiation experience and a few weeks after.

What to buy or gather:  (Green Tea spray supplies in green)

* Green Tea bags (I purchased a 100 box from Costco & had left-overs)

* A fine mist spray bottle (I emptied a bath & body works spray bottle that had a body fragrance spray in it.  Clean it very well, you don't want any remaining alcohol in the bottle or tubes).

* an 8 oz. microwave safe mug

* Turmeric capsules (taken orally, 1 capsule daily)

* Vitamin B-50 (WITHOUT Vitamin C) 

The night before radiation:  

Place 2 green tea bags into a mug with 1/2 cup hot water (1 bag to 1/4 cup water was usually plenty--but try the full recipe the first couple of days and evaluate from there).  Let this stand over night.

In the morning, pour the freshly seeped tea into the fine mist spray bottle.

Before radiation, clean the skin area.  There should be nothing on the skin.  Dry skin after cleaning, then apply a thin layer of green tea spray.  Leave skin open to the air for a few minutes until it is dry.  (If you spray too much, drips will form and it will also take longer to dry).  

After radiation, (these were my instructions--follow your doctor's instructions if they are different), I applied a prescription cream to the skin.  After that soaked in (or after returning to home or work), I sprayed another thin layer of green tea spray, covering the entire quadrant or area of radiation exposure.  Let it dry, then clothing can be put on top.  Repeat the green tea spray 2 more times throughout the day, totally 4 sprays per day.  

Every night, repeat this process.  You need fresh, potent green tea every day.  

Follow the steps above each day of radiation.  

Turmeric has also been found to reduce burning.  In studies, they found that women from India undergoing radiation had less reactions to their skin.  They first researched Curry, which is made up of multiple spices/herbs, and then narrowed it down to Turmeric.  I took a capsule of Turmeric each day, and also a Vitamin B-50 (making sure it does NOT have vitamin C, which is bad for radiation).  I was told not to take multi-vitamins during radiation.   

Best wishes to you!  If you had chemotherapy, you'll likely feel like radiation is a cake walk.  It's a fast in and out, compared to chemo days.  For me, it was about 20-25 minutes in the door of the clinic and out again.  

Choirs are Singing: Five Years Out and Cancer Free!

On Tuesday, I spent the afternoon at the beautiful Huntsman Cancer Center in Salt Lake City, Utah.  I had a bone density test, mammogram, and exam.  It is a HUGE relief getting this latest update.  I live cautiously, always watching for signs of cancer recurrence. It’s a constant, daily worry that I place on a back shelf in my mind and move on with life.  Each check up and test result eases the concern.  I’m SO happy and thankful.  I’ll elaborate below with more details, and end with a couple of links to uplifting messages.  

View Downtown Salt Lake City from inside Huntsman Cancer Center

Waiting....anxiety.

I started with a bone density test, DXA.  The results were that I still have osteopenia--decreased bone density not to the point of osteoporosis.  My best score was -1.2 and my worst score was -2.3. A T-score of -1.0 or above is normal bone density.  A T-score between -1.0 and -2.5 means you have low bone density or osteopenia.  Below -2.5 is a diagnosis of osteoporosis. (Bone Density Exam/Testing - National Osteoporosis Foundation (https://www.nof.org/patients/diagnosis-information/bone-density-examtesting/).

The mammogram was next (not fun!), and all looked normal.  (I had a breast diagnostic ultrasound in December, and that also came back as normal. ) After the mammogram, I met with the doctor.  I told her that I’ve been extra cautious, missing out on things that looked fun, worried that I might break a bone and have another long recovery like when I broke my pelvis in June 2015.  That took 6 months to heal.  I had two opportunities this winter to go snow tubing with the teenagers at church, and both times, I just watched, thinking it wasn’t worth the risk.  My wonderful doctor said to live life-- there’s always some risk, but not enough risk to not enjoy life.  I’m looking forward to some tubing next winter!

The first week of May, I'll be 5 years out from my diagnosis, which is how the medical community seems to measure survival rates. February marked four years from completion of treatments, which seems like a better way to measure how long one has been cancer free. I'm very thankful. Treatment wise, in November they changed my hormone blocker from Tamoxifen to Arimidex. Every 6 months I got an injection of Prolia to help my bone strength. Daily I take Vitamin D3 2000 and Calcium 1200--and just learned that the calcium should be broken into 600 mg twice a daily. That's the end of the medical update. Now onto the uplifting part.

Last weekend was General Conference, when we have a worldwide broadcast to members of the Church of Jesus Christ of Latter-day Saints.  It is an uplifting weekend that happens   

twice a year.  While I was listening, Elder Jeffrey Holland shared a message comparing life with a choir, " Songs Sung and Unsung ." He talked about how important every member of the choir is, and how valuable our individual talents are to the richness of the choir.  He referred to the song, “There is Sunshine in my Soul Today,” and how at times in our lives it is hard for us to sing, and sometimes, there are experiences that are so sacred, so dear to our hearts, that words cannot describe what we feel in our hearts.  As he was speaking, I reflected on the “choir” that I am a part of, especially as I was going through cancer treatments.  Every prayer, text, email, note, kind word, deed, and act of service touched my heart so deeply.  The love that was expressed through countless individuals resulted in what I imagine the heavenly choirs of angels must sound like.  I still can’t reflect on my experience without becoming teary eyed with gratitude and awe for the lessons I learned from so many angels.  It’s too dear and tender to share as a brief comment in a Sunday school class.  I keep it in my heart and reflect on the difference so many people made in my life at a time when I needed a choir singing all around me.  

As we celebrate this week before Easter, I'm singing my favorite gospel choir song, "Oh Happy Day." I celebrate Jesus Christ and His gift to all of us.  Because of Him, we will all live again.  Because of Him, we will see and be with those we love again.  Because of Him, we can feel of His love, support, and strength as we walk with Him during all of life’s adventures.  Because of Jesus Christ, we have a pattern to follow. He provided the way for us to return home to our Heavenly Parents.  He is the Prince of Peace.  Oh Happy Day!