9-25-2014 Treatment #3

What a relief to drive free of rush hour traffic to the northeast corner of the Salt Lake Valley today. The hour long drive gives me time to reflect on the past treatments and what awaits.

Parking at Huntsman Cancer Institute is well thought out: valet or underground the entrance is easily accessed and inviting.

My first visit to Huntsman had given me a slight pause as only an elevator greeted me. Today I am confident it will take me to my destination and my sister. As always I am anxious to see the sparkle in her eye which has recently made a welcome return.





Curved architectural lines define the building's layout giving the impression of endless possibility. Interesting how a facilities design can influence the mind and calm the spirit camouflaging the necessity of it's presence.

The noon appointment which seemed to be a nice change caused extended wait times and allowed for anxiety to build. Labs were behind and the doctor visit slipped into regular general practitioner wait room expectations.

Dr. Sweetenham is a cheery, slender gentleman with a comforting demeanor and a pleasant accent. With my secretarial duty in full swing, notes sounded something like this: Feels good, eating everything in sight, this week anyway. No sweats, fevers, or chills, no lumps or bumps. Lymph node going down. Lungs sound good. Ankle swelling nearly gone. Will use same meds this treatment.

We ask, "What may have caused the cancer?"

Reply- "We just don't know". Possibilities include a genetic piece,  virus or infection and tied to a damaged or defect in the immune system.

And, "How do I know how I am doing?"

Response- Unless the unexpected happens a scan at end of treatment will determine cancer status. Maintenance treatments will be recommended as there is still a risk the cancer can return. They will be just the Rituxan, no chemo medications,  so no side effects. Should feel fine and hair will grow back. Yeah!!!!!!

The visit was short and informative and fortunately allowed for a lunch at the Bistro on the 6th floor before a 2 o'clock treatment. It was somewhat telling leaving a full patient waiting room and the subsequent difficulty in making the next appointment. Fitting us in will put us at the front of the line even if it means sleeping in the parking lot.
 

Waiting for the infusion room was also lengthy which had not been our prior experience. A surprise visit from family provided a pleasant diversion.

3pm-Finally treatment begins.

Each medication is crosschecked with name and birthday to ensure accuracy. Signs of reaction are closely monitored. If evident the dose is backed off immediately and re-evaluated. Fine tuning of the meds is obviously still in progress. Soon drowsiness sets in and chit chat is replaced with relaxed sleep leaving me to once again reflect and helplessly watch and wait.

The view from my chair reaches across the valley. As a helicopter takes off from the pad at the U of U Hospital just across the way, I can't help but once again marvel at the efforts taken to make this building of pain a place of healing for every aspect of wellness: from the learning center to internet access to classes which highlight symptom management.

After 7 1/2 hours, the nurse announces the conclusion of our stay is near and reassures us that any needs should be relayed and will effectively be met. All that's left is the drive ahead and hopefully a restful, uneventful evening.

Till next time as the sun sets over the Oquirrh's. Three Down - Three To Go.

Snake Creek Grill is Astounding

Snake Creek Grill Fundraiser, Sept. 20, 2014

It's absolutely remarkable the love and support received last night at the fundraiser. I am absolutely humbled and brought to tears by the amazing display of humanity. I have worked at Snake Creek Grill for Dean and Jillian Hottle for 10 years. I have been truly blessed with an extended family that I have an undeniable love for. If you have not had a chance to enjoy Dean's incredible food, you need to get in there. 

I want to send a HUGE THANK YOU! to my family, friends, anonymous donors, and to total strangers who felt it in their heart to give; you are all AMAZING and my heart continues to cry THANK YOU!!!!
Give it up for Jenna Powell, Theresa Morin and Judy De Los Cobos for working so hard at caring and serving all those who came to enjoying dinner. Ian Lowell, Elissa Glass, and Steve for jumping in and backing up the servers to make it all possible to give the quality of service that we do at Snake Creek Grill. Lucille Jalbert is an amazing hostess and makes everyone feel welcome when they walk in the door. Lisa Barber was fundamental and a do it all person from flyers, reservations, making drinks, running checks, setting up and taking down the silent auction which took till wee hours of the morning. 
The Kitchen staff, Fernando, Timmio, Roga, and Chris were essential and key to feeling our bellies with delectable and artful plates of food in a timely fashion. These guys work over hot grills with smiles on there faces. What a great team!
Thank you Zibber Stockman and Connie Greene for helping with the raffle and silent auction essentials. Jillian Hottle and Daniel Powell orchestrated the auction and raffle like pro's managing the tables and making everyone feel the importance and gratitude of the event.
Thank you Dean Hottle for not just being a great boss, but a true friend. He offered up his restaurant and incredibley delicious food to warm our hearts and tummies. This fundraiser could not be possible with out his generosity. He is a genuine person and has always  been a bright light in my life.
Jenna Powell worked tirelessly to assemble and promote this fundraiser and completely blow it out of the water. She gathered thousands of dollars is auction and raffle prizes in just one week. She is a great example to humanity and someone I really look up to. I hope that someday I can be the example that she has set. I love you all more than words can say.
Let's not forget the donors who generously donated some incredibly awesome items for the silent auction and raffle. Anyone would love to be the recipient of these great items! 
The news has come in. The fundraiser was extremely successful. These folks donated all of their time, tips, and services, collecting $9,280.00 including the silent auction and raffles. This is going to go along way to help with the increasing cost of medical bills and the loss of work due to medical. Each Chemo Treatment can run upwards of $40,000.00, for which I have two years to look forward to. It really makes you wonder whats wrong with healthcare and pharmaceutical industry. It is and has always been family, friends, and the people that surround you in your community that make life worth living. Thank You!

Huge shout out to the Donors:
Snake Creek Grill                                                      Five Penny A Floral
Park City Dermatology                                           Water from the Moon
Park City Coffee Roasters                                      Michelle Barnhart de Ramirez, SOSM
Black Diamond Equipment                                    Crazy Cricket Photography        
Starshine Studios                                                    Timpanogos Valley Theater
Jonelle McDonald                                                    Days Market
Jupiter Bowl in Park City                                       Real Foods
Kobayoshi Studio of Martial Arts                        J. Go Gallery
Cheryl Laub with Right Weigh Health Center   Arlene Sosnowski
Scott James Jewelry                                             Mattressezz
Waldorf Hotel                                                         Soldier Hollow Resort
The Office! A Vertical Fitness Studio                  Duke Brothers Horses
Kaelee Everett with My Dear Hazel                   Slim and Knobby's Bike Shop
St. Lawerence Thrift Store                                  Heber Valley Cross Fit
Barbara Lowe Brereton                                       Balance
Zermatt Resorts                                                     Anytime Fitness
Tire Factory                                                           Nicole Jensen Robinson
Nicole Cardona's Photography                          Mind Ur A Bees Wax
Waldorf Astoria Park City                                   Lifestyle Chiropractic and Wellness
Rejuvenate Day Spa                                             Stephanie Neal Photography
All that Stuff in the Barn                                      On the Fringe Salon and Spa
Jill Conner Tuttle with Berkshire Hathaway Home Services
Wasatch Chiropractic                                          Whimsey Lane
Heber Handspringers                                           Papa Murphy's
Neways

Safety in Numbers

My mother always told me there was safety in numbers. I just thought she was trying to redirect me. The events of the last couple of months have proven her wisdom. With the help of social media, communication has reached a whole new level.

Lesson learned: If you find yourself in the driver seat: get organized, recruit passengers, welcome new ideas and learn to say “Thank You”. 

Since I don't live next door and knew I would be unable to meet all of my sister and her families needs, I began looking for a way to get information quickly to our family, her neighbors and friends. So I found a private chat room with the groupme app.

 

"Hello family and friends of Tonia. Just to get everyone up to speed.

I have been with Tonia this past week. She has been diagnosed with

Non-Hodgkins Lymphoma and began chemotherapy yesterday.

She is feeling quite overwhelmed. It was suggested that with the

intensive treatment she will go through that a central person

be an information contact. I think it will be me.

With that in mind I have invited you to share in this group."

Groceries, meals and rides for the kids appeared in minutes. Updates were relayed without the need of lengthy phone calls and overburdening Tonia. What a relief she had so many friends. I wondered if in the event I needed a friend, if I would be so lucky.

Religious organizations are always a great support and that is just what we needed. Members of the LDS Ward provided rides and have kept meals coming for weeks now. In addition family weekly visits keep us all in tune with each other.

A Facebook group was created by a friend in her support and in just a couple weeks has reached over 120 members. This outlet for friends and family is a continual reminder of well wishes which can be accessed at her leisure. Tonia’s CrossFit friends workout in her stead giving her strength anxiously waiting for her return to the gym.

Tonia and her daughter needed an outlet for her story to be told, hence the blog you are now reading. Coming soon is a new website created by a family member which will serve as a jumping off point for all things Tonia.

Medical bills and living expenses are a major concern when the breadwinner in the family is unable to work. With this in mind her employers sponsored donation sites and a fundraising dinner with a raffle and silent auction. I look forward to see in person all the great items that community businesses have donated and a yummy meal.

Speaking of piling up, the amount of resource information, prescription labels, discharge papers and bills are overwhelming. In order to keep it all in perspective a file was created in Google Docs to house the “stuff”. One invaluable tool is the log which can be accessed by anyone who has permission to track what is going on during medical visits.

 

It wasn't long ago that I joined the realms of smart phones and social media. I always thought, “Why would I need to text when I could just pick up the phone?” Now I question if all this would have been possible in such a short time without the help of technology.

For anyone out there facing a journey of your own remember you are not alone. With all this support I am sure we can all withstand the test of time it takes to recover.

Yes Mom, you were right, there is “ Safety in Numbers”!

It's time for a Shaving Party!

There comes a point, around the second chemo treatment, that your hair begins to fall out by the handfuls. In order to avoid it being everywhere, you've got to shave. My boss at work, Scott suggested a shaving party. I was surprised at first, wondering if there would be anyone who would really want to participate. But, I decided to set the date and asked my niece and hairstylist Karli and her friend McKell to come.

I highly recommend to anyone facing hair loss to give it a try. Sharing this with friends was so fun and what I received in return was well worth it. Take the pain out of the harsh realities of cancer and embrace it. It is absolutely liberating.

You know a friend told me that "your hair does not make up who you are" which is very true. Sometimes we get so caught up in what we have physically or materially that we forget to look inside. All of this stuff is really just clutter. At the end of the day its not about stuff or what you look like. It's about being your best self and creating quality in life with those who surround you. I challenge you to take off your physical armor and discover what your made of. We are all trying to find the meaning of life's challenges. What I know, is when I find love for those who surround me and share life experiences with those I come in contact with. I am the most happy. Thank you everyone who supported me in finding myself.
“As we are liberated from our own fear, our presence automatically liberates others.”

By My Side...

 At just three years of age my life as an only child came to an abrupt end... "IT" was a sister. Now I would be forced to set the example and, share my bedroom. Evidence aside it looked as if she would be by my side for quite some time. There was the very memorable spider killing incident, Christmas Eve covert operations, and masking tape bedroom subdivision just for starters. Years went by, friends came and went and she was still by my side As a matter of fact when looking back I don't really remember her not being there.

So when the day came that I heard "CANCER" I couldn't help but relive some of the past. Too bad my mind was busy running through the scenarios as to what the future might look like. This couldn't be right, "congestive heart failure?" "fluid in the lungs?" "collapsed lung?". She was the one that always made it to the top of the hill first. My other siblings and I, yes there are others - six more space invaders, have always called her a mountain goat. Nothing made sense and I was scared.

There have always been sick people, people with disabilities, people with cancer. But non of them were in my own little world. It wasn't until after I married and had children of my own that it touched my personal life. As I transitioned into a wife and mother my sister was by my side when I needed a listening ear, someone to share a warm camp fire, a favorite recipe or a mental health day on the ski slope.

Yet again I have my sister by my side. The scenery however is a little different this time. I am back to my list making, logistical organization, hand holding, and watching amazing people gather in support around her. I will always brave the spider, Tonia, keeping you in my mind, my heart and by my side.

Breathless

Breathless

There is nothing more to love, then when you feel 

the endorphin's taking over your body in a moment
 of effortlessly floating in deep powder.  The freedom 
and feeling of complete submersion in the greatest 
moments of life... and feeling invincible.

Or, when you cross the finish line on your much anticipated 100 mile bike ride that you trained for all year.    

How about, running that last 26 miles... and finally realizing that you can do hard things.   Oh, if I could do this the rest of my life! 

It was a priority for me to eat whole clean food and exercise regularly, I loved it. And in the last year I have been absolutely energized with Cross Fit. My family at Heber Valley Cross Fit greeted me every morning with smiles and a new challenge. I never felt more fit. From workouts like "tabata" to "bring sally up", I was pumped enough to free-heal all day. 

I found myself in the month of May, two weeks into gym wars with Tasha and Karli and something was off. I couldn't be.... more motivated by my "team yellow".  I soon found myself cutting back on my weekly workouts due to extreme tiredness. Not to mention when, I was completely out of breath 1/2 way through my workout. WHAT's the deal?

Pneumonia right?  infection of the lungs....No I don't have flu or cold like symptoms, I have edema. Edema so bad that over the course of the summer I put on 22lbs of water. ugh! This sucks, I have to get back to Cross Fit and finish out gym wars!

It was at that time that my family physician refers me to a Pulmonologist specialist. Ouch! no insurance, that will be $409.00 to walk into the doctor office and say 

"Hi my name is Tonia Turner". 

I cannot wait any longer I'v got to breath. So I see the Pulmonologist and we start with a Chest x-ray, and then an ecco-cardio gram, and then take it a step farther with a CT Scan? What am I told, "Looks like its heart failure"? Better think about health insurance, ha, ha.

Yep, fluid on the lungs. My right lung had collapsed, I was only breathing from a small section of my left lung. I guess if you have to breath we better do a Thoracentesis:

• 

  Tapping the thorax, the thrusting of a trocar and cannula into the cavity of the chest with a 6 inch needle for the removal of accumulated fluid.          Promise you'll never do this!  

• My right lung had collapsed. 
• Breathless! 
• Over the course of 10 days and three of these procedures later. 10.5 liters of fluid was taken out of my lungs(don't ask me how that fit) I could finally lay on my back which really helped my me get some much needed rest, but how do I stop this and what is causing it.
• Events may be horrible or inescapable. You never really know what's coming. A small wave, or maybe a big one. All you can really do is hope that when it comes, you can surf over it, instead of drown in its monstrosity. I know now its not heart failure and that I can do hard things.
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Losing your Hair #@*?:!

You might not think about how important your hair is until you face losing it. And if you have cancer and undergo chemotherapy, the chance of hair loss is very real. Whether or not you have hair loss from your chemotherapy depends mostly on the type and dose of medication you receive. But whether you can maintain a healthy body image after hair loss depends alot on your attitude. I am fortunate to have a wonderful family and awesome friends that have been very supportive. The American Cancer Society has an amazing program that allows you to go to one of there wig shop's and pick out
 "For Free" a wig, 5 hats, a scarf, and 3 headbands. What an comfort knowing that I did not have to spend anymore money on head coverings as the medical was enough to worry about.
I was warned, and it didn't take long before I notice hair loss. It started gradually between the first and second round of Chemo Treatments, but really picked up on the second. Here I am two days after the second treatment and I could almost pull it all out by hand.
 I don't know at what point you become ready as a women to have no hair. I found it a nice transition to have my niece Karli cut my hair short so that it was a little more manageable, although there will come a time when I am sick and tired of picking up hair off of my shirt and the ground, that I will just shave the rest. As my hair is thinning I am sporting my new headband, I can do this!

A New Day with Non-Hodgkin's Lymphoma

In March 2014 Tonia was at the top of her game. Twenty plus ski days under her belt and feeling better than she had in a long time. Then everything changed..... Today Tonia stands at the entrance to Huntsman Cancer Institute in Salt Lake City, Utah. Non-Hodgkins Lymphoma - diagnosed Monday, August 4th.

The purpose of this blog is to share her journey, her story, and hopefully enlighten those around her. Posts will not only include Tonia's perspective but those of her daughter and sister.

Today is a new day. There will always be more to come.