Radiation stinks but I'm on the home stretch!

Dear family and friends,

I can hardly believe that it has been two months since I last updated my blog.  I have had such a busy schedule that I barely have had time to think.  I guess going to radiation every day at 2:30pm except Saturday and Sunday for the last month would explain how I spend a good part of my day!  Not being one to let that slow me down there has been some fun along the way to break up the last six months.

Mike and I celebrated the end of my chemo with a Backroads bike trip riding from South Carolina to North Carolina.  I crunched and used an electric-assist bike for the trip, as I knew I would not be able to ride the Blue Ridge Mountains.  But, I did still get a great workout on the flats and rolling hills, riding a total of almost 200 miles in 5 days.  Not bad, righttttt????

October was a wonderful celebration month.  I once again chaired ‘Key to the Cure’ with my very good friend, Jacquie Dorrance.  We had a great turnout at the event, bringing together 230 women raising money for TGEN.  The money is used to help fight women’s cancers.  Jacquie and I were both honored to have many family members fly in for the day (all my sisters, my Mom and the girls made the trip to be there).  It was a very special time for all!

Brigid & Summer Rye, Elyse & Amanda Mueller,  Ruth (Mom), Mike, Me, Monica Mueller, Megan O'Toole, Barb Basalone, Ellen Dewan

My medical oncologist, Dr. Karen Anderson, was our guest speaker at this year’s ‘Key to the Cure’.  She is a wonderful doctor and scientist.  Dr. Anderson spoke about current studies and progress related to women’s cancers.  She did an amazing job!

Dr. Karen Anderson

Speaking of progress, I am now one of 3,000 people in the world who have had their DNA and RNA genetically sequenced.  The scientists and doctors at TGEN and Mayo have looked at the sequencing of my ‘healthy body’ and my ‘sick body’.  In their comparative studies, they have found a ‘target gene’ known to tie to cancer.  At this time there isn't anything on the market that works with that gene.  But, my sequencing information is in a database, and should something come available my doctors would be alerted. 

Sequencing is very cutting edge and is really the future of medicine.  I feel very fortunate to have this information available to my doctors.  Because of the DNA information, I will have a bone scan and blood test every four months to assure that I stay healthy.  This is really good news and proactive progress.

So, on Monday, December 1^st, I will finish 6 ½ weeks of radiation!  Radiation is not for babies!  I thought it would be easy, and although it is quick and basically painless, it is not easy.  My skin is in awful shape, red, blistered, tight, itchy and painful.  Have I complained enough!  Let me just say, I will be glad to have it over. 

Once again, I am struck with gratitude to all of you as well as to those I have never met.  The Key to the Cure event is humbling, as I know that so many women continue to need our help in finding a cure, I am just one of them.    Love to all.  xox

The kindness of strangers...

Dear Family and Friends,

It is so hard to believe that September has arrived and that fall is almost here.  We made it thru another summer, and I have made it thru my chemo treatments.  I finished the last treatment on Tuesday, August 26th.  After a tough couple of days Mike and I celebrated the finish with a last minute quick trip for some cooler weather and early leaf viewing with the Dorrance's and Bella.

I am so glad to have this part of the process behind me.  I am still doing some recovery; tired, low blood pressure and general fatigue.  But, the thrill of completion out-weighs any negative effects.

I want to thank you all for your prayers, cards, emails, calls, texts, and time, these past few months.  The support that you have offered me is over whelming.  I also got support from complete strangers.  Although I would rather have not had to have cancer return, there was again a wonderful reminder of how kind people can be. 

One of my favorite moments happened one day in a grocery store parking lot.  I was walking to my car when a mentally challenged employee who was collecting carts stopped and said, ‘God Bless You’.  She was such a sweet lady and together in the parking lot we hugged.  I had never met or seen her before, but she reached out to me with just a few caring words.  I went to my car and cried. 

Today, I met with my radiologist, Dr. Vershalee Shukla, we have set-up a time to start radiation on Monday, October 13th.  Prior to receiving radiation I will have CT (computerized tomography) Simulation.

The CT Sim will help the Doctor set things in place so that each time I am treated the radiation beam will hit the exact same spot.  They may make a mold to hold my body in place for each treatment.

Dr. Shukla wants to be somewhat aggressive with the radiation – hitting my lymph nodes, breast and a small upper portion of my lungs.  The goal will be to completely eradicate any potential cancer cells that might remain in these areas. 

The radiation will last 6 weeks and will be every day.  The radiation only takes about 30 minutes and I will meet each week with Dr. Shukla to track progress.  The side effects are fatigue and perhaps some skin irritation. 

So, until October 13^th, I plan on staying BUSY!  I have lots to be excited about and also looking forward to just hanging out.  Thank you all.  God Bless YOU~  xoxoxo

Three chemos down, one to go...hold the fries!

Dear Family and Friends,

Hi all.  The last time I updated you was July 4^th weekend.  We had a great time in Forest Highlands.   The following weekend we headed to San Diego, where we spent time with Amanda and her FIANCE! Eric Hough.  We had a wonderful time getting to know more about Eric and hearing of their plans to move to Santa Rosa, CA. 

I wasn’t off the plane but a few hours and headed to Amanda and Eric’s backyard where Mike and Amanda shaved my head (see the video below with my hairdresser Pierre).  My hair was held on with just hairspray and was falling out in clumps, but I wanted Amanda to be part of the ‘clean up’ process.  Honestly, by that time you really just want the hair gone.  I was asked if it hurts, it feels like when you have had your hair in a ponytail and take it out – that bent hair feeling. 

Back to Amanda and Eric.  They got engaged on July 31^st.  Eric made it a very special event and we were thrilled to get their phone call that evening announcing their news.  We all feel very lucky to have such a wonderful addition to our family.  Life is GOOD!

Eric & Amanda

The proposal!

Yesterday was my 3^rd chemo treatment.  The last treatment, July 15th did take a little longer to recover from so as I am told this one might take even a little bit longer.  It feels like you have the flu, body aches and just over-all crummy feeling.  I control it with the doctor’s recommendation of Aleve and Claritin, which is so helpful.  My sisters will come to AZ again to help out.  It is so great to have them here with me.  After this treatment there will be just one more on August 26th followed by a 5-week break and then six weeks of radiation. 

In between treatments, Mike and I look at the dates and try to figure out when I will start to feel well and make fun plans.  We just returned from a week in Okoboji, Iowa where we spent time biking, fishing, doing yoga and lots of dinners on our patio watching the sunset.  We had a wonderful visit with Mike’s high school buddies and their wives.  Then, finished the week in Omaha with Mike’s family at the beautiful wedding of niece, Chelsea to her now husband Eric. 

I want to tell you all thank you so much for your love and support.  Sometimes all of this feels so surreal to me.  But I want you all to know how very thankful I am for all you are doing and all of the love and prayers you have offered. 

Love to you all.  Katie

Chemotherapy has started - let the fun begin!

Happy post Fourth of July!  I’m thrilled to report that almost two weeks into treatment I am feeling great except for the few days right after chemo.  I now feel better about making some summer plans but we are taking each day as it comes and working around treatment schedules.

No wig!  My new hairstyle for a few weeks

My first chemo treatment was Tuesday, June 24^th.  Mike and I were at the Mayo Clinic almost all day.  My chemotherapy is called TC chemo which stands for Decotaxel (T) and Cyclophosphamide (C ).  It actually takes about 3 hours to intravenously inject but there seems to be many steps before it actually starts.  It was surreal to sit there with Mike and look around and see people of all ages who have to do this week after week; some without anyone at their side.  I am again reminded how lucky I am to have Mike, my family and all of you.

Monday, prior to chemo, I had my blood drawn to check my white and red cell count.  This will give doctors as my baseline throughout treatment.  The chemo, as you probably know, kills the cells as they are dividing, both good and bad.  So, there is about a one-week period where I am more susceptible to infection than other times.  The Monday, Tuesday and Wednesday of chemo treatments, I actually feel AWESOME.  They give you a steroid; which made me want to organize my house – my idea of FUN!  After, this first treatment, Thursday and Friday were pretty tough, but I rebounded Saturday and Mike and I joined friends at Steak44 for dinner.  So, it is basically and up-and-down, day-by-day, process.

My next three treatments will be July 15^th, August 5 and the last one will be August 26^th.  I will take a break after chemo before beginning radiation.  I think lots of progress has been made in regards to chemotherapy.  The doctors really try to help control the side effects as best they can with other drugs and suggestions on how to take care of yourself and your body at this time.  The day after each chemo treatment I will be given an injection called Pegfilgrastim, which helps my body make more white blood cells to fight infections.  YOU will not believe it, but this little shot alone costs $10,000!  It is crazy!  But, we are committed to following the doctor’s recommendations.

Okay, well I hope I answered some questions and also hope that you feel a little bit more educated about breast cancer and my treatment.  Thanks for reading!  xoxoxo

Lionel was awesome but the test results...

Dear family and friends,

In the last blog I told you that Mike and I were heading to the Lionel Richie concert.  It was awesome, and Lionel and I made a connection – he pointed and smiled at me and I gave it right back.  He keep coming back and all the band members looked down at me wondering who he kept pointing to!  It was a BIG DEAL!  …. At least to me it was and that's really "me" in the foreground of the photo! 

"Say you, say me".....

"Stuck on you..."

The last few days have been quit busy with doctor appointments trying to get things in order so that I can head out of AZ to Portland for a few days to visit with my sister, Megan and her family.  I will then fly from OR to Park City to meet up with Mike and friends to spend a very fun weekend doing lots of activities and one big outdoor dinner on Main Street  This may be the last really fun week for a bit.  Why? 

I found out that I will have to go thru chemotherapy and then radiation.  The Oncotype DX test, which was conducted on my tumor, came back on the higher side.  So, although it means I have to have chemo, it also means that the cancer will react positively to chemo reducing the chance of reoccurrence in combination with drugs for the next five years. 

The treatment that will be used is called TC Chemotherapy which is a very common for breast cancer patients.  Although I think I am prepared for the side effects – I bought two wigs this weekend and one is red HOT - I am sure that I will feel some bumps along the way.

The chemotherapy will begin on Tuesday, June 24^th and will be a total of four treatments, three-weeks apart.  I need to be cautious about being around people and traveling due to infection caused by a low immune system.  But, I do know that I am very fit and healthy which should help with the process. 

The last chemo treatment will be August 26^th, and then I will take a few weeks to recover before starting the radiation, called external beam radiation.  The radiation is every day M-F for six weeks.  So, by the holidays I will be done and feeling much better.

I appreciate all your prayers and kind words.  I am so disappointed to miss some very important occasions and celebrations this summer.     

Love to all.  Katie

Good news, more tests and Lionel Ritchie!

Hi family and friends,

Yesterday, Mike and I met with Dr. Karen Anderson, medical oncologist, at Mayo.  She is a neat lady, very bright, very patient, and is good friends with Dr. Jeff Trent (TGEN).  

Dee and Dr. Jeff Trent at the Cycle for the Cure Fundraiser

Dr. Anderson did NOT say that I had to have chemo, although I was prepared for that conversation.  She would rather have a test called:  Oncotype DX done on my tumor first in order to get a better sense of any re-occurrence of the cancer and any benefit chemo would really offer.

IF this test falls 'low' on the scale for re-occurrence  than we may very likely not use chemo and follow a plan of weeks of radiation, followed by 5-10 years of  hormone therapy to completely suppress any estrogen.

The Oncotype DX test results take about 2 weeks, so our follow-up with Dr. Anderson will be Tuesday, June 17th where she will give us her final recommendation.  She plans to include the other doctors on my case in making her recommendation.  I will follow whatever plan they suggest.

In the meantime, there are a few more appointments with the radiation, plastic and oncological surgeon docs.  I have two more tests this Thursday; a bone scan and bone density test.  Because radiation can weaken bones, we want to know my bone density prior to radiation.  And the scan will locate any potential 'hot spots' for cancer.  Both tests are good precautions.

So, that is the update.  I feel GREAT!  I am anxious to get to do some workouts before everything just drops to the ground!  Mike and I are going to hear Lionel Richie on Sunday – can’t wait.  He is playing with CeeLo Green.  I am thankful everyday for all of you. 

xoxoxoxokatie