A long overdue update, "it's different for everyone" and other ramblings...

Hi friends. How is everyone? I am sorry I have been missing for most of 2015. You know how people say irritating, undefinable statements like "everything happens for a reason", "it is what it is" and "it's different for everyone" and you want to punch them in face because that really doesn't answer anything? Well that has been my entire year. And I now also realize that they are entirely true. I have heard the statement "it is different for everyone" a bazillion times this year from friends and all my doctors and nurses. I have hated this statement so much because it doesn't at all prepare me for what to expect, but I have finally accepted that it is so deeply true.

I have had so much love and support from all of you since I was diagnosed 1 year ago, today, and I am so, so thankful. I realized you may not know this since most of you haven't heard much from me along the way. I stopped writing when I started chemo. It was like I just couldn't find words. Words just felt empty. The truth is, I was trapped under a very large and heavy shame rock. Sounds weird, right? Yeah, it felt weird. It took me a long time to figure out what was going on and why I felt this way. The reality is, I felt really scared, weak (both physically and emotionally), guilty, vulnerable and exposed. I wasn't positive and did not have brave or strong feelings or things to say so I said nothing at all. Which turned into a spiral because then I felt bad for not communicating. I never would have guessed I would have responded this way, but proven once again to be painfully true, "it's different for everyone"

So with this post I would just like to apologize, say a very heart felt thank you to my friends and family and send a long over due update.

Chemo was every other week starting in April and ending mid-July. It was hard. Losing my hair wasn't actually that bad. Having a port in my chest, losing my eye brows, eye lashes and feeling like a swollen, disfigured lunatic, due to the steroids, were the parts I struggled with. Thankfully chemo is over. I had reconstruction surgery September 10th and they also removed the port. My parents and sisters have been an invaluable part of my surgery recoveries and each round of chemo.

I started Radiation on November 2nd (thank you Jenni Zook for helping me with that decision and being my friend since the halls of Eureka Middle School. And all my EMS/EHS friends for still being so supportive after all these years and in spite of that time in 8th grade when the blood vessel burst in my eye and I looked like a monster). I go to Froedtert Hospital every day, Monday-Friday, for treatment--it is basically like ground hog day, the movie. I have 2 weeks left of the 5 week treatment regimen. It is going as well as it can, I think. The side effects are mostly tiredness and skin irritation. For a claustrophobic person, such as myself, one of the worst parts is being strapped to the table with an ungodly chin strap for each treatment as the table digs into my head and I count to 10 on repeated and remind myself that a person can handle anything for 10 seconds, while listening to country music songs about bars, trucks and pretty girls and think about how similar our lives are. And by similar, I mean polar opposite.

Anyway... You may be asking what's next? How do we know if treatment worked? Well, we don't. Which is a hard thing to wrap my head around. Next, I will be watched like a hawk by my doctors for the next 5 years and they will also want me to take a pill everyday to block estrogen. I am now working to rebuild strength, stamina and emotions so I can return to work hopefully in early 2016.

So on the anniversary of my diagnosis I am looking out at the first snow fall of the year with my cat, Boo Radley, thinking about the past year. So much has changed, and still changing. God is doing something with all of this. I don't know what, but I feel it. I have so much less control than I could have ever realized. I am learning to let go and replace my clenched fists with open palms. It has been a long and painful year. You all were with me through it even if you didn't realize it. Thank you.

You never know what choices you will actually make or how you will respond to bad news until the idea of the bad news becomes reality. Six months ago if I had been asked if I would ever do chemo, my answer would likely have been no. Truthfully, the idea of chemo and the side effects scares me. I'm sure it would scare anyone. The last few months have showed me that you just never know...I start chemo tomorrow. 

I have seen several oncologists and researched conventional and non-conventional options and have decided that the best fit for me is to combine both. This option is not readily available so I am so thankful it is close enough to Milwaukee that I can drive, stay for a few days, and then drive back home. Treatment will take place at the Block Center in Chicago: http://www.blockmd.com/

This morning my friend Magda went with me to have the port put in and then we went to the Block Center were I got a high dose vitamin C treatment, worked with a physical therapist and met with the PA's and nurses to prepare for tomorrow. Chemo will take 5 months, 16 rounds total, and I am still considering radiation. In the mean time the team I work with will focus on nutrition changes, lifestyle and rehabilitation, all while going through chemo. The additional treatments will not prolong my recovery and they are individualized specifically for me--which is my favorite part.

I know people go through this everyday and I am amazed and thankful for the people I have met along the way. Their stories encourage me and the doctors and nurses at Froedert and the Block Center have been amazing. I have no idea how I will react to chemo, which makes me nervous, but I am feeling more positive and that I finally have some direction.

Also, thank you for being hopeful and positive for me these past few months when I have struggled. The email, calls and texts really do bless me.  

Well, it's been officially 6 weeks as of today. I'd like to think that I have made the most of the past 6 weeks and the surgery recovery down time, but to be honest I've really only done 3 things--see doctors, research and binge watch Grey's Anatomy on Netflix. 

The doctors at Froedtert have tracked my recovery progress, helped get my arms moving and talked me through their suggestions for treatment. Currently they are recommending chemo for 5 months, radiation and ongoing medication--which made me to do a lot of research. All of these treatments have been tested and are known to often treat my type of cancer but also have side effects, potential risks and are not always effective. Since I can't swing a trip to Mexico right now, I looked for information on places that would provide integrative options a little closer to my neighborhood. I found the Block Center in Chicago and I have an appointment on April 1st. I am planning to meet the doctors and staff for a second opinion prior to starting chemo (which is currently scheduled to start on the 3rd). The Block center offers traditional treatments like chemo and radiation as well treatments like acupuncture, high-dose vitamin C and individualized nutrition counseling. For right now the jury is still out on what my exact treatment plan will be, but I'll let you know when I know. 

In other news, I have had several visits with some of my friend from the Chicago area. It was beyond great to see them and have help with really fun things like laundry! I have learned that laundry is a lot more bearable if you get a cup of the best latte you've ever had and conquer the local laundromat with friends. Also, a squirrel jumped out of my dumpster at me last week, which is clearly a health hazard. 

Lastly, thank you for your continued encouragement and support. I have a long list of people to write back and people to thank, but for now, even if I haven't responded to a message or text yet, please know it is not unnoticed or unappreciated. I truly appreciate you. 

5 Day Update

I arrived at the hospital at 5:00 am on Thursday the 12th. They took me back and began prep and all the set up around 5:20. At this point things moved quickly. They hooked up the IV and all the other necessary weird surgery tubes and apparatuses like a well oiled machine. I, on the other hand, cried a lot. And although I was as ready as I could possibly be and ready to get this thing removed, I honestly was scared. They gave me an epidural and at that point I knew I did not want be awake for any more of the surgical process. Apparently it started about 7:30 am and ended around 2:00 pm. I cannot verify that information because I was gladly asleep.

Waking up is the strangest experience; you can hear before you can actually open your eyes. When you are finally able to open your eyes, things slowly come into focus, similar to the way it is projected in movies. I was very disoriented when I woke up, but obviously happy to be awake.

After they took all my vitals and monitored me for awhile, my surgeon came to speak with me. Dr. Kong said things went very well. In addition to the surgery for the tumor she took 3 lymph nodes. The preliminary testing showed 2 nodes were clean and 1 had cancer cells. Everything has been sent to pathology and they will have all the specifics in 5-7 business days. Nothing will be determined until the actual results are back.

I got to my room around 3:30 pm. All of the nurses staff were amazing and it made completely worth it to go out in the freezing cold of Milwaukee.

The first days after were not as bad as I thought although I did not have much use of my arms. They left the epidural in for the first 24 hours and I felt pretty good. After it was removed the story was a bit different... Each day is slowly getting better. Friday I had a few different visitors and flowers to cheer up my room. Thank you!!!

I was released from the hospital yesterday afternoon. At that point my parents went home and my sister Elisabeth stayed to take first watch. She will stay until Thursday and Lora will come up to replace her for a few days. At that point we will play it by ear (finally a benefit to being the youngest of 6--lots of people to help :). Physical Therapy starts next week and it will be 3-4 weeks before I can drive, and longer for full range of motion.

Tomorrow is a follow up with one of the surgeons to see how I am recovering. Once pathology results are in I will meet with an oncologist to discuss treatment.

Calling and/or texting has been more difficult than I planned, but I hope to be able to communicate more directly soon. In the mean time I wanted to update you here. Thank you for reading and for you thoughts and prayers. Thank you also for the encouragement and support. Seriously, thank you. I could not walk through all of this alone.

On my way to the hospital. My parents and sister Sarah are here with me. Long day ahead, for everyone. I am very thankful for all the prayers and well wishes from all of you. 

10 days and counting

Everything about this is changing me,,. slowly. I never wanted to ask for help, yet I am. I did not want to live again in blizzard land, yet here I am. I tried to work hard and fly under the attention radar, but I think you all know what is happening. I traveled with a nutribullet….How did this happen? And why?

Most people are doing the best they can as often as they can. I know am.

Getting settled/walking the plank. 10 days until surgery. 

Made it to Wauwatosa. Trailer unpacked. Everyone home safe. 

Agenda

1/31
- Complete the drive to Wauwatosa, WI (Milwaukee)
- Unload the u-haul with the help of my brothers and sister before the snow comes on Sunday
2/1-2/3
- work on unpacking and getting settled
2/4
- doctor appointment
- more unpacking
2/5
- doctor appointment
- shop for post surgery
2/6-2/9
- finish preparing apartment/getting settled
2/10
- doctor appointment
2/11
- pre-surgery procedure/test/stabbing
2/12
- 5:30 am hospital arrival for surgery
2/18
- turn 36

Wondering about recovery and everything after? That makes two of us. I won't know until after surgery but I'll let you know when find out. 2015 is TBD in every way.

Williamsburg, KY

Today started way to early for my liking. I loaded the u-haul trailer with the help of my dad, Amy, Bob and Jim--there is no way I could have pulled this off without all of their help. My dad left with his truck and the trailer around 1:00 pm and I left after the necessary clean up, etc., around 3:00. We made it just over the Kentucky state line. Tomorrow is destination Milwaukee. It looks like it should be 8-11 more hours, depending on traffic, etc. Good thing I rediscovered the audio book Jamie "loaned" to me 2 years ago...Don't worry, I'll get back to you regarding my thoughts on Bossy Pants, by Tina Fey.

A lot has happened since my last post. I met with a surgeon and plastic surgeon in Milwaukee, which was followed by more tests and stabbings. The good news is that the results of the stabbings seem fairly positive, but we won't know anything for sure until surgery. In other news, I have also learned how to spell the words surgery and surgeon.

After a lot of thought, I decided I wanted the doctors I met with to be on my team--you, my dear reader, are also on my team, by the way. I have no idea of how long recovery will be or what the next year of my life looks like, so it became apparent that I would need to relocate to the great state of Wisconsin. Between appointments I was able to find an apartment in Wauwatosa, which is about 10 minutes from the hospital and 10 minutes from downtown Milwaukee (Wauwatosa, that's another new spelling word for me). Craig and Joanne, some dear friends I have in the Milwaukee area, helped with support, transportation, appointments, etc., and it was more of a blessing than I can begin to explain.

So where are we today? Well, surgery is scheduled for February 12th. I am currently in North Carolina packing up my house and saying goodbye (I flew back Monday evening), while my dad is driving down from Illinois. Saturday we will make the drive up to Wauwatosa. I have appointments February 4th, 5th, 10th and 11th, and then of course D-day on the 12th.

Packing has been hard and there has probably been an unreasonable amount of tears. I don't really want to say goodbye to this place or my wonderful neighbors, Ginny, Jim, Amy and Bob, but I think it is the right decision. In Wisconsin, my family will be within a 3.5 hour drive radius and I have a good support system with friends in the general area. Oh, how I will miss this place though. I now truly understand why James Taylor sang so many songs about the Carolina's.

Alright, back to packing...

It just keeps snowing

Heading to appointments.... Why does it have to be January in Milwaukee?

3am

3am alarm clocks are just plain ungodly. I know because that's what time mine went off today. I rolled out of bed (after appropriately hitting snooze twice) and did the normal "final packing scramble" for my 5:20 flight. Charlie, Jamie's husband, took me to the airport, where reality and emotions about leaving Idaho and the situation in general turned me in to a hot mess for the 4:30am viewing pleasure of everyone at BOI. The 1 hour delay on the runway didn't help but at least they dimmed the lights on the plane.

Why Delta would schedule at flight at 5:20am out of Boise, Idaho in January is beyond me. Turns out de-icing for an hour prior to take off is not as fun as you would imagine. Good news though, the last 3 years have primed me to make a 20 minute connection like a boss.

I landed safely in Milwaukee at 11:30am and was greeted by Michelle (who I mentioned in my previous post). Michelle shared with me her experiences, connected me with doctors at Froedtert Hospital and gave me insight into some of the unknowns. I also had dinner with her and some of her friends with additional experience, insight and encouragement.

Tomorrow (Tuesday the 13th) afternoon I will meet with 2 different surgeons. My hope and prayer is that I will have clarity, direction and most of all peace with the best decision.

This is just a quick update and I will let you know more as I know more.... As always, the fact that you care truly means the world to me.

November 21st, 2014

I actually had to call to follow up on my test results. That seems like a good sign, right? Wrong. 2 biopsies. 1 cancer, 1 blob of hair (yeah, I don't really know either, but I prefer a hair blob to a cancer blob any day). 

It has been almost 2 months and I sill don't feel like it's real. Initially I was in and out of doctors offices getting examined and stabbed by what felt like a thousand needles. When the holidays got close there was just a lot of waiting for things to reopen. My dear friends Jamie and Charlie surely did not expect me come visit for Thanksgiving and stay until mid-January. At the very least they deserve a large trophy, but probably a puppy would be a more fitting choice. 

Initially, surgery was going to take place quickly and in Boise, Idaho. The doctor in North Carolina who called to deliver the news to me said surgery should take place ASAP--prior to Christmas. Excellent. Who wouldn't want cancer for Christmas? I, however, did not have surgery prior to Christmas. There were many reasons, but the details are not particularly important at this point. 

Around Christmas I was connected to Michelle from the Milwaukee, WI area who was diagnosed around the same age a few years ago. After talking with her and doing a lot of additional research I felt like I should get a second opinion to find out all of the options available. Michelle connected me to her doctors and on Monday, January 12th I will fly from Boise to Milwaukee and see doctors on Tuesday for a consultation. 

As of now I do not have a lot of answers, but here is what I do know:

-I have the most common type of breast cancer.

-My genetic testing came back negative (which is a good thing for both me and my family).

-They will have to complete surgery prior to knowing what types of post treatment they will suggest.

-There are a few different types of surgery options likely available.

-I hate biopsies and anyone who tells you "they aren't that bad" is potentially crazy, and anyone who has had to endure many of them deserves a kitten.

-I have not been working since I was not able to keep up my travel schedule due to previously mentioned doctors appointments and stabbings. However, am thankful for my benefits through work and our short term disability program. 

Speaking of thankful, I am beyond thankful for all of you--my friends and family. I feel genuinely cared for and support by each of you--thank you all from the bottom of my heart. Please do not ever feel helpless or like you are not doing enough. You are. I promise. I don't know how well I will be able to keep this page up, but I wanted to try to keep you with me on this unexpected journey...