Monday, October 27, 2014

Cancer Tips and Heading Home

I am reading this really fantastic book about cancer, called "Crazy Sexy Cancer Tips". I too was surprised by the title of the book. The books unconventional way of offering advice has been tremendously helpful. Basically a guide to "Oh sh** I have cancer. What do I do now?" (written by a woman diagnosed with a rare form of cancer prior to marriage and children).

I have learned that I am in a very small group of women who are single, not married, and do not have children when diagnosed with Breast Cancer. So although some information others have offered is helpful, I have learned to trust my doctors, pray all the time and trust my own intuition to attack my cancer. Unfortunately cancer is not black and white. Given my BRCA 2 positive testing, the chances of this beast of a disease coming back still exist, so I am determined to do everything in my power to see to it that it does not.

One of the tips the book gives is to get organized. The author advises the reader to make sure you keep copies of everything, log your medication, and keep track of appointments. Below are some pictures of my cancer binder. I am protesting the color pink at the moment so I bought a kelly green binder instead. Almost three weeks ago now, I sat down on the floor in my room, played music, and got myself organized. I called it my, "cancer craft". This has helped me keep things together. As you can see I was given a LOT of information and keeping track is a small way of staying afloat. I have four doctors to stay in touch with, a Breast Surgeon (Moore), an Oncologist (Basche), a plastic surgeon (Williams) and a fertility specialist (Ambler). Having all of my information together in one place is tremendously helpful.

A large part of this journey is as well staying financially with it.... (at least aware of the financial piece). I quickly made myself aware of my coverage and deductibles so I am prepared for the financial obligations to me. Although the financial piece is overwhelming...... being in denial about how much it will cost for me to beat cancer doesn't help me beat cancer at all.

In addition to getting organized I did a couple things for myself. I got a massage :) and my roommate helped me purchase a yoga class package. Both of these things have made small dents in reducing the amount of stress I am handling. (stress can be a trigger of growing cancer, but try telling someone who has cancer not to worry..... if only it were so easy). On top of my full time job working at a private equity firm, I seem to go to the doctor at least twice a week since this happened, come in later to work and work even later. I am exhausted.

But more than handling the logistical pieces of cancer and preparing to take a month or more leave from work....... I have tried to squeeze every last ounce of goodness out of the past few weeks. From carving pumpkins, taking my road bike out for 20+ mile rides, meeting friends for runs, dinners and sneaking away to the mountains to see the fall colors.

I am grateful for this time to process and prepare......I mentioned I will be heading back to Louisville this Thursday for the weekend. I would love to see each and every one of you if I can..... 

Sunday November 2, 2014, my parents will be hosting an open house at their house from 1:00- 3:00 pm. Address: 1506 Bella Arbor Way, Louisville KY 40245

Please spread the word and stop by to say hello and to give me a hug. (And to cheer on the Broncos of course) I would be so honored. Please feel free to reach out to me if you have specific questions, old friends, new friends, Adventure Christian Church folks and Polo Fields families who have been cheering me on for so long I would love to see you all.

For my Colorado friends and family, please come stop by my house on Monday night in Washington Park around 6:30 pm. I intend to drink good bourbon, give lots of hugs and be surrounded by all of my favorite people. Please come by and hang out.

Monday November 3, 2014: 6:30 pm- 9:00 pm at 1152 South Elizabeth Street, Denver CO 80210

Last piece of business, I wanted to make you aware of a place that dear friends in Colorado have created to share updates, share ways you can help me and things that are taking place. I intend to keep writing on my blog but my friends will be coordinating some specific ways to assist me, both financially, spiritually and practically. Please visit this page for information on donating, sending mail, food, or simply hearing how I am doing.

Here is the link here

Every single comment or message is read not just once but multiple times. So thank you. They remind me that I am not alone and I am so grateful.

Hope all of you have a really great Tuesday. The sun is shining here, I took a 6 am yoga class and I am already on my second cup of coffee for the day. So take that cancer, worries and fear :)

Cutting my hair and Nesting

I often relive the moment I was told I have cancer. Where I was downtown Denver.... the cross streets. Gradually coming to my knees and eventually finding myself leaned up against an office building as the doctor told me the devastating news. Tears just streamed and my heart ached. In so many ways that moment, those emotions, that fear come rushing back every day since.

Thursday afternoon, with my roommate and Samantha (my cousins wife) I went to the plastic surgeon. We went through my reconstruction procedure and I signed all of my paperwork. The nurse explained in detail how I will have four drains put in to help drain out the fluid collecting due to surgery. Two drains for each breast. The drains will have to be emptied and the amount of fluid measured each day (multiple times). I will have the drains as long as fluid is collecting. Estimated (3 weeks). In addition to the drains I will be given what they call a pain pump. Until the Sunday following surgery, this will secrete numbing medication into my chest to help reduce the pain. Once it is emptied I will pull the cords out myself. I think it may have been at this time, that the nurse said, "You look terrified". I simply took a deep breath, said "Well, I have cancer. So yes I am a bit terrified". Throughout the two hour appointment I went in and out of shock. At times I would handle things as though it is a was a business deal. I would process the information and ask specific questions. At other times it would occur to me that the nurse was telling me what will be happening to me. That those cords, drains and medication are going to be inside of me. Then the shock would wear off and my eyes filled with water.

Following the appointment the three of us went to lunch and shared a bottle of champagne. We talked more of my fears and processed more of what is my new reality. When the hostess poured our champagne into the glasses we told her how much we liked the glass. (unlike traditional flutes they were round). She proceeded to say "they were actually designed and inspired by Marie Antoinette breasts." I smiled and thought "well of course they are....." I cannot escape it even if I tried too.

Following our lunch we headed to Nordstrom so Candice could purchase me a Diptyque candle to keep with me and burn at all times. These candles can only be found at Nordstrom's and come with a heavy price tag, but once you smell them, you would understand (they are amazing). The three of us wandered the mall, I purchased a soft loose fitting shirt (anticipating this being my wardrobe for a month of two). We all agreed in spite of the afternoons appointment with the surgeon we had not been shopping with other girls at the mall since we were in high school and it was kind of fun.

Friday evening I had a special appointment (after hours) to see my hair dresser. I had been advised that cutting my hair prior to surgery would help make it easier. Easier to maintain and should I eventually undergo chemotherapy than it would make it less dramatic should I loose my hair. (shorter pieces falling out than longer pieces).

As a side thought, losing your hair is sort of a cultural right of passage for cancer patients. It as though your bald head tells people that "you must really" be sick. (Truthfully hair loss due to chemotherapy means that they were not able to get all of it out in surgery or they want to make sure it will not return). It is a strange sort of label we place on individuals or children who are sick with cancer. I have come to understand that hair loss or no hair loss. Cancer is cancer. It sucks. It hurts, it aches and it robs. I pray that Chemotherapy is not required for me..... but understand that if it is I will be prepared either way.

My hair dresser who has become so dear to me, shared champagne with me (Yes... you are seeing a trend, when trauma happens drink champagne it helps) while she cut a significant amount from my head. I cried. We discussed my new reality. Although it was an unplanned hair cut. It was less traumatic as I had previously thought it would be. (I kind of like it anyway :))

You can see my before and after pictures below, as well as me sneaking the bottle of champagne in.

As for the remainder of my weekend it was one of the most beautiful Colorado weekends in a long time. I rode my road bike for 30 miles on Saturday, watched football, and started nesting. I have what seems a lot of things to do before preparing to not be able to move or lift much. I have begun laying out my recovery library books (books I will try and read), as well as packing for Louisville. I fly out Thursday morning.

This has really happened quickly. I have already incurred close to $4,000 plus in medical bills, was given sheets of prescriptions (over 25 or so to be taken after my surgery).

On a positive note, The Ironman organization refunded my entry fee for the Boulder half ironman ($370.00) without hesitation which is such a relief. As well as I was able to get a credit for my flight to Guatemala for my best friends wedding I will be missing. The little details are coming together and a week from Wednesday I will be admitted for surgery.....

I plan to continue to write, share my journey and invite all of you to come to battle with me. Sunday I was running at Washington Park, stopped to take a deep breath and was so filled with joy. I am so humbled that God would choose me to have breast cancer. Yes it has been hard, and it is only going to get harder but the overflow of gifts that have come because of this diagnosis, sweet conversations with friends, transparency with others, tears about future all are because of cancer.

I have also learned the sweet surrender of not trying so hard anymore. I am giving up. Most of you that know me well, know that I like to be in control. I like to plan things out, make things happen, execute things well and this diagnosis has literally stopped me in my tracks. I feel broken, hurting and am going to trust that all things truly do work together for good and this small part of my story is going to mean good things to come.

This morning I met with the Fertility doctor. I will write more on this later. Much like me, I am sure you are wondering why...... (truthfully I am not sure I am ready to talk about this piece publicly yet).

Below are some pictures from this weekend, on my bike ride, my run and a picture I snapped at a bar while watching football. I would not recommend getting diagnosed with breast cancer (I would not recommend it ever really) but if you do especially not during the month of October. IT IS EVERYWHERE.

Really wish I could have asked the lady if I ordered the drink could it be free, and I could keep my donation for myself :)

As well a great picture of three great friends who honored me during the Breast Cancer walk in Tegucigalpa, Honduras this past weekend.

Thursday, October 23, 2014

Surgery 101.

So many details...

Maybe sometimes sharing too much is a bad thing but in this case there have been a lot of questions regarding my surgery, post surgery procedure, reconstruction etc. So to try and fill in some gaps I am going to try and explain some things below. This as well has become a therapeutic way for me to share:

November 5, 2014, two weeks from yesterday I will be admitted to the hospital around 11:30 am. I will first undergo an injection of fluid (glowing fluid of some kind). This fluid will then we placed into my body so my surgeon can see which lymph nodes light up. This will help her determine which lymph nodes she will remove during surgery.

My surgery will begin at 1:30 pm. My breast surgeon will first remove all breast tissue, left side first then right side. On the left side only, she will complete the sentinel lymph node biopsy. (The removal of the lymph nodes to see if the cancer is found in them). The lymph nodes they remove are underneath my left armpit. Should cancer be detected in them..... she will remove an even larger amount of lymph nodes for further testing. This could mean two things...... that the cancer is in my left breast and in just my lymph nodes or it could potentially mean it has metastasized (moved to other parts of my body). Based on my pathology report they do not suspect this to be the case however it is still a possibility. So we are hoping the cancer is restricted to the tumor on my left breast and my lymph nodes are clear :)

Once she removes all breast tissue of one side, the plastic surgeon will come in and immediately begin constructing my new breasts. I will be doing this through tissue expanders. The expanders are to hold the place for the implant. Over a period of weeks, I will go in while they (insert saline into the expander) make the space for my future implant. The actual insertion of my implant will not take place until a later date.

Unlike a traditional breast augmentation I lose close to all (minus the 1% they cannot guarantee) breast tissue. My breasts will be built from nothing with just an implant. In my case specifically my tumor is too close to my left nipple so I am not able to keep it. At a later date the breast surgeon will reconstruct nipples and complete with tattoo of the pigmentation. The decision to not keep my neeplra is part of the great that should by keeping the nipple, I am keeping part of my breast tissue so breast cancer could come back that way.

Surgery all together should take place in around 3-4 hours (I wrote this originally and it is more like 6 hours) . Once they know whether my lymph nodes are clear or not, they will go out of surgery and inform my family.

This would be huge :) So we are praying hard for this.

I am expected to be out of work 4-6 weeks. Depending on my recovery, my healing and whether or not the cancer is found someplace else. My time away from work is very dependent on my surgery so I have tried not to speculate what that will look like but otherwise be present in the now....... like  at this moment eating the homemade apple pie my roommate made last night and grateful for long nights sleep.

As for today, I am heading to my pre-surgery appointment at the plastic surgeon in an hour. My roommate and dear friend Candice, along with my cousins wife (practically my cousin) Samantha are coming along. I have made a vow that I will not attend one appointment alone. I have learned that I need people in this and having people sit in a waiting room with me is just a small part of that.

Never mind all this nonsense though..... Next Thursday, I land in Louisville. I get to have one last weekend with family and friends. I cannot wait :) I fly back to Denver on Sunday before my surgery and my parents will be joining me in Colorado on Monday. Time, although at times I wish would move quickly so I can get this process started, is also so dear to me these days. I don't mind if it doesn't slow down. I am soaking every last bit of life out of the changing season and warm weather.......I have reunited and connected with so many of you in the past few weeks and for that I say "thank you cancer". Although you (cancer) have broken my heart and instilled fear in my day, you also have been the giver of so many gifts because of this diagnosis and for that I cannot say enough thanks.

Warmest to all of you, sending love and prayers my way. The cards and gifts are so appreciated as I have them displayed in my room. I know I am not alone and as a friend who has become so dear said to me, "we" are going to do this. Because all of you are on my team..... and I am grateful.

Sending so much love to you from sunny Denver and a Broncos victory tonight!

Mt. Evans on my morning bike ride to work.

Sunday, October 19, 2014

I would take cancer

Cancer is an amazing thing. It not only the power to take your life from you, but it can prohibit you from living in the present, while it inhabits your very being. One of the most common questions people want to ask me is "What stage are you?" "It's early isn't it?" I often smile and say, "Of Course, I mean how late can it be? I am only 26 years old?". I have learned my positive enthusiasm makes others less scared. For people viewing from the outside, they often want to take your diagnosis, simplify it down to a set of bullet points so it is manageable and more comprehensible. Becuase if people can simply do that, then cancer isn't that bad. They have a peace of mind, tell me I will be fine and carry on with their day to day.

I wish it were that easy but you see it isn't. For me it isn't at all.

Cancer is invading my every being. Cancer came into my life without permission and now has the ability to destroy everything around me. It can prohibit me from finding joy and laughing. Prohibit me from the life I have been granted.

But I refuse to give it that power.

Wednesday evening I walked into my house from work and our house was full of guests. My roommate was hosting friends for dinner. As I walked into the house the guests were all laughing and drinking wine. With my head held down and fighting the tears that seemed to be creeping up, I made a beeline to my room. I shut the door to my bedroom and nearly collapsed in my tears. Dropping my bag, tears streamed from my eyes like never before. In that moment I laid on my floor and crawled in close. I held my knees to my chest and weeped. Weeped in the fear of the future. Of this November 5 date looming in the future and the unknowns. I cried in envy. Envy of everyone else who gets to keep going, without what seems to be a care in the world and I am battling cancer. In the hour or so that I laid on my floor crying I told myself "I don't know how to do this."

Unfortunately that is where I am at right now. In the midst of unknown. Until November 5 the full scope of my cancer diagnosis is unclear. I am at this point carrying on with life as I always had. minus the fact that every ten seconds I feel a sharp pain in my chest and I am reminded that I have breast cancer.

On Thursday two different individuals in my life shared with me the passage of, Luke 22. The story where Jesus wept, pleading with God that he would take away the obstacle before him. But Jesus then said "but not my will but yours be done."

I would never wish cancer on anyone. This new reality of cancer books, and doctors appointments and pathology reports is something I never imagined becoming an expert in. But this is my reality. I have breast cancer and I cannot change that. I am prepared to see what God will do with this and I sure as hell want to be prepared to fight.

Although I am deeply sad, and often collapse in tears, I would take a cancer diagnosis over and over again to have the gift that has been the past few weeks anyday. The two weeks with my parents are something I will treasure for the rest of my life.

Wednesday after I had been diagnosed I fell asleep next to my dad while he and my mom reasearched plastic surgeons. I was safe and in that moment I was at peace. I have shared countless moments like this one. I otherwise would have never had these moments and for that I say thank you.

Saturday morning I gathered with five of my closest girlfriends so they could pray over me. For an hour we sat, shared and the girls lifted me up. Unable to pray before my tears began to fall, they prayed when I could not.

I am not angry at God. I am scared and I am sad. But in the midst of it alll, I don't want to miss what he is going to do in all of this. I don't want to one day be in remission and think to myself wow you missed it. Didnt you see what he was doing the whole time?

So my prayer today is not for my cancer to go away like magic (although it would be nice). But rather to soak in this journey. To breathe in the sweet moments with others. To be grateful for people who show up with no previous close relationship and want to remind me of truths when I cannot see them myself.  I am grateful for people who declare that God is good and that they believe God is doing something good in all of this. I want to remain grateful for friends who take time on their weekend to lay a hand and wipe my tears.

Again I cannot say enough thanks for all of you who have reached out, who are reading, who are praying and who care.

As a young female cancer unfortunately can be a much bigger battle. Things I have never before had to think about, fertility, breast feeding, premature menopause etc. So while these still remain unknowns and could never become "issues" praying for my fears in this are appreciated.

Warmest regards to all of you. And I am off to cheer on the Broncos :)

"Because if I could see what he could see, then I would make the same choice"

Wednesday, October 15, 2014

"I don't think I could do that."

In the waiting room before I went back for my MRI, I stared at an older woman waiting in a chair across from me. With a scarf covering her bare skinned scalp and olive skin, it was obvious she had cancer. I thought to myself ...How does she do it? How does she show up and wait, time and time again? Waiting hoping that this time the news the doctors had would be different? It must be hard to visit a doctor all the time. To be sick.

I looked at my mom and said, "I don't think I could do that."

My mom, aware of the thoughts in my head without even having to say them, agreed with me. Shaking her head, she said, "It is hard". For those people. For those people, who have cancer. It is very hard.

Soon after my name was called, I went back for my MRI. When I was finished I came back to the waiting room and noticed that the older woman was gone.

I smiled at my mom, told her that the MRI went well and we walked out of the hospital quickly discussing where we would have dinner that evening.

Never ever did I leave the office that day thinking I would be "one of those people, who have cancer".

Two weeks ago yesterday I became a cancer patient.

Today I am trying to find out how I am supposed to do this.

How do I show up to work? Go to the doctor for what already feels like the tenth time? How do I keep going, when it seems like the world around me has stopped. Like someone robbed me of the life I once had.

Last evening I went on a run (while I still can) at Washington Park with one of my best friends from college and shared my frustration. Frustrated that it seems everyone around me gets to keep going on with life...

Friends planning trips, buying new houses, getting married.....

As for me, I am preparing to battle breast cancer.

My heart aches.... like I never ever knew that it could.

Yesterday I cancelled my end of November flight to Guatemala. My high school best friend, Stephanie Riley is getting married there. After a year of anticipation, her wedding is November 29, 2014 and I don't get to be there.

I came home last night to my first of many large medical bills and several medical bill estimates. This new reality is lonely, heart breaking, sad and scary.

As you continue on with your day to day, may you find joy and gratitude in even the minimal and say an extra prayer for me. Your messages and virtual hugs are received with the utmost gratitude. The gifts and cards adorning my house make me smile, so thank you.

I am honored to announce I will be an aunt next year. An aunt and a breast cancer survivor even if I don't know how to do either of them.

Congratulations to my sister and Josh. I love you both and your little bean on the way.

Below is a picture of Amy Patwa, my friend I spoke of and a woman who I have admired so much. Two years ago she lost her battle with breast cancer. She like me was BRCA 2 positive. She radiated joy through the end and made sure everyone knew that she was not angry. But she trusted who God was in it all. Sure hoping she could share some of that with me today.

Friday, October 10, 2014

The Day

I have tried to find the words to write down what has happened over the past week and a half but I quickly become overwhelmed, followed by fear, sadness and tears… so I have chosen not to write. But to hopefully answer some of your questions about how such news could have come to me just one month away from my 27th birthday I will transcribe the events below.

July 24, 2014 I got the call that I was BRCA 2 Positive for the breast cancer gene. (I had decided to take the test so that I would know my likelihood of getting breast cancer and how to be proactive). As  a result my OBGYN ordered an MRI. She advised that as a result of being positive I am considered “high risk” for breast cancer. The statistics indicate that BRCA positive patients have a 60-80% chance of getting breast cancer in their lifetime. This futuristic fear led me to believe that at some point I will probably have breast cancer ........ but never expected it to be anytime soon.

Flash forward to a month and a half later, September 25, 2014. My mom flew in that morning to spend the weekend visiting me in Denver. The purpose of her trip was to walk with me, in of all things, The Susan G. Komen Breast Cancer Walk. We had decided to make a weekend of it, to honor her sisters, her mom all three touched by breast cancer and that both of us are BRCA 2 positive. Knowing that my mom would be visiting I decided to schedule my MRI while she was here so she could be with me. The evening of, Thursday September 25, 2014 I went in for my Breast MRI. My mom and I left the MRI glad the test was done for the year and ready for our weekend.

Friday September 26, 2014 I was at work while my mom was hanging around her hotel for the day. Around 10:30 am my phone rang from the radiologist. Two places on my left side showed up on my MRI abnormal. The radiologist explained that they wanted to do a mammogram and an ultra sound. Knowing that my mom was to fly out in the afternoon of Monday September 29, 2014 I asked if I could come in Monday morning. Fortunately they could take me first thing that morning.
The weekend with my mom was bittersweet and overshadowed by the looming unknown that would meet us Monday morning. All of a sudden my excitement to walk in the Breast Cancer walk disappeared by my own fear that someday my name would be a T-Shirt at a walk.

Monday September 27, 2014 I had my mammogram first. The mammogram specifically targeted the left breast. Following the mammogram my mom and I walked in to a small room for my ultra sound of that area. Although I was not able to see the screen, my mom looked on as the radiologist circled the same area of my breast and underneath my left arm pit. It was obvious something was in both places. After what seemed like hours of silence in that room (maybe only 10 minutes). The radiologist explained that I have an enlarged lymph node and a place in my left breast she wants to have biopsied. My eyes began to fill with water, as fear filled my heart. My mom in tears explained that she was in town visiting and it would be really good if they could get me in today. The nurse kindly said let me check and see what is open and I will come right back.
Waiting, we asked a lot of questions to the radiologist and she encouraged us that it could very well be nothing. She went on to explain that younger women often have developing breasts and this is not uncommon to find places. In my heart (for some reason) I had a feeling something was not right.
The nurse came right back in the room and said you will not believe this, but they can take you right now. Within 15 minutes I was prepped for surgery and having the biopsy done of the two places. 

1. An enlarged lymph node under my left arm pit

2. Small tumor in my left breast.
That evening my mom and I weren't up for doing much. We ate dinner, shared our fears, cried a lot and messaged family and friends to ask for prayer. Afraid of what the next day would bring, we anxiously fell asleep knowing that the next day a call would come that would either erase our fears or symbolize the beginning of my journey to fight breast cancer.

Tuesday September 30, 2014 (THE DAY). I decided to go to work, knowing that it would be miserable waiting around for a phone call. I thought work would distract. My mom had my car and was back at her hotel. Almost exactly 24 hours after my biopsy my phone rang while walking back from lunch downtown Denver…..
Walking away from my colleagues for privacy I answered the phone and the doctor kindly asked how my biopsy incisions were doing and how I was feeling. I answered him and my heart began to beat fast. (I thought, why is he lingering on the phone?).
The doctor then asked, “Is now an OK time to speak?
As my eyes filled with water, and my heart began to ache, he said that he had wished he had better news for me. With a cracking voice and tears I listened and said “OK”. He said, “Your left breast tumor is malignant. You have Ductal Carcinoma Breast Cancer.”
I sat down on the side walk and listened. I am not sure I heard a single thing he said. Hanging up the phone I walked to my colleagues and nearly collapsed in my tears. I called my mom. I told her, “You need to come get me. My left side is malignant. You need to come get me.”
Like a robot my mom answered me as I spoke to her. The shock was in full effect for us both.
The rest of this story is kind of a blur. 

What do you do when you find out you have breast cancer? How do you respond? The truth is I have no idea. I am still in shock. It is as though my life was ripped out from underneath me. I am grieving, sad, angry, and scared.
The following morning Wednesday October 1, 2014 my dad flew in to Denver so both of my parents could be with me as we met with doctors all week. I have seen a breast surgeon, oncologist and plastic surgeon. 

November 5, I will have a double mastectomy. Following surgery my treatment plan will be determined (chemo, medicine etc). The tumor is small but the cancer is growing fast.
I am heart broken and I am scared but I am so grateful that I decided to have the genetic test done. If I had not, I would most likely not have found this tumor until it was much further along.
Your prayers are appreciated as this long road begins. My family is so grateful to all of you and it does not go without notice.

Amy Patwa a dear friend, also BRCA 2 positive, died after her battle with breast cancer two years ago in January. Her words have never been more true than they are to me today.

"I have my opinion and desires for how i’d like our stories to be written. but I trust God more than I trust myself. I know He loves us and desires way more for us than I could even fathom. now there are times where I’d take the boring life with nothing impactful happening. but that’s not what He’s got in store for us." - Amy DiBias Patwa 

Sending so much gratitude from this new place and journey
Love Kristina