02/15/2012

I hate the concept that as a survivor I am going to make it because I’m strong, or I’m a fighter. This leaves those of us survivors who get metastasis as people who simply didn’t fight hard enough. Apparently, they weren’t strong. This makes no sense to me. I’m not overcoming anything because I’m stronger or fighting harder or determined to beat cancer. I’m ok right now because my cancer hasn’t attached to another part of my body. Maybe I am lucky enough that my surgeon and chemotherapy took care of any rogue cancer cells, but it’s not because I’m tougher than the next person. It’s because, so far, I’ve been lucky. In fact, today has solidified just how lucky I am. I haven’t shared my recent fears and troubles with anyone in my family because I didn’t want to scare anyone. Quite frankly, I think I was scared enough that I didn’t want to say the possibility out loud to my parents, brother, and other family members. On January 31^st I came down with the most awful headache imaginable. The following week I went to see my physician who gave me a shot for a migraine and a follow-up pill in case it didn’t work. Four days later, I was back at the doctor, prescribed antibiotics for a potential sinus infection. Nothing helped. My headache hasn’t let up. In fact, it’s there right now. Monday, I went in for a Brain MRI at the recommendation of my doc. My amazing “pink” sister, Sarah and Shaners met me at Salem Radiation to sit for 45 minutes while I got the full-workup. This was the same place that I had my biopsy and MRI when I was first diagnosed. I could feel the fear rushing through my veins when I walked in. I couldn’t help but remember the feeling I had when I heard the bad news. I knew that it was possible for bad news to come out of this place. I also logically knew (and had stupidly Googled) that my symptoms were possible for brain metastasis. I had begun to believe that my vision was blurring and had even seen an optometrist before my MRI to make sure that my headaches weren’t being caused by vision issues: 20/20. I also knew that nothing else was working to fix this headache. Nothing. I waited all day Tuesday for my results and then came home to get ready for Valentine’s dinner with Shane. Just as I was getting ready to leave for dinner, I started spotting! This could mean that I am coming out of menopause…which could easily be causing migraines from the increase in hormones in my system. Most of dinner I couldn’t concentrate. The only thoughts going through my mind were how I was going to deal with going through treatment for Brain Mets and how I was going to break the news to my family. I called my doctor this morning at 10:30 am and was met with the welcome news that my MRI was clear! I’ve never felt such relief in my life. It’s likely that the pain I’m experiencing is a side effect of coming out of menopause. I’ll be following up with my doctor regarding ovarian suppression to reduce the estrogen surge and hopefully kick this headache to the curb! I apologize to my family for not sharing this mess with you – I felt like this was one time that I couldn’t let you lose sleep over my health.

My happy news, however, is bittersweet as I found out Tuesday afternoon that another sister has been diagnosed with Stage 4. Kim is an amazing sweetheart who has done everything right – she’s a vegan, a runner, a friend to so many, and someone who I desperately wish didn’t have to deal with this new phase of cancer. It seems like there’s no rhyme or reason to who ends up Stage 4 and who is able to leave this crap in the rearview.

Kim, you already know you are in my thoughts. I am sending hugs and love and healing vibes to you. If you’re reading this and you need to go out for a drink or ever need someone to talk to – you know how to get me.

Deep breaths and renewed hope as we move forward in this journey!

12/31/2011

Today, we are on the brink of a New Year, a new start, and a new view from a place we have not been before. Last year, January 6^th, 2011 I finished my last chemotherapy. This year, January 4^th, I will be finishing my reconstruction and emerging with a look back on cancer rather than standing in the middle of it or anticipating more treatment. I’ve found that this process has made it hard to see the forest but for the trees.

Looking back on the 2011 makes me cringe a little. I started this year with a bald head, lethargic, and generally uncomfortable. Mid-year, I was suffering from third-degree radiation burns and oozing skin, and I ended the year with my first reconstruction surgery and my port removal.  This year has been cancer to me, and I’m happy to leave it behind. For 2012, I plan to continue to seek some clinical trials and lifestyle changes that will ensure that I’m still here to celebrate the end of 2012, 2013, 2014 and so on; but for the most part I want to leave cancer in the rearview mirror. There are days now (which I never thought would come) where I don’t think about the fact that I have cancer (as you can see though, I haven’t quite transitioned to the past tense “had cancer”).  One of my many resolutions for the new year is to stop dwelling on what was. That’s gone now (pending a good biopsy result next week). Instead, I need to plan for my future and enjoy my present. Many times over the past year and a half I’ve thought about withdrawing my retirement and taking a backpacking trip through Europe (sounds nice doesn’t it?). Something about retirement feels so unrealistic to me at this point. Diagnosed at 27 with lymph involvement….changes of making it to 65? Probably not that likely. But, I’m going to hang my hat on the fact that I WILL live to retirement. So, PERS, keep earning good interest rates because I’m going to need that money when I finally quit the workforce J. This new year, cancer is going to change to the past tense and I’m going to live my life as I would have without cancer – with a few small differences: I know now how important exercise is to health, I also know how important it is to watch what you eat (and not just watching it move from the fork to your mouth), I know how much reducing stress can reduce inflammation in the body, and I know how phytoestrogens in the environment, our cookware, and even our cosmetics can have a huge effect on the amount of estrogen in a person’s body. I know that alcohol is a huge risk factor for my survival and how important moderation will be. I’m moving into 2012 more aware of what I consume and how I take care of myself. And armed with this knowledge and a plan for the future, I fully anticipate showing off my permanently perky breasts to all the women I end up with at the nursing home. Sorry ladies….these won’t sag J

Shane and I have also resolved to try to get to see all of our friends more. We have become homebodies over the past few years, through treatment and trying to keep ourselves a float. We plan to see everyone more often in the New Year! Thank you for all of your love and support that has helped us fight to this point. Please keep my in prayers and good thoughts (or meditations, or whatever it is that you do) that my surgery and biopsy go well on Wednesday and that Shane is able to stand me through another week of recovery!

Much love to our amazing friends, family, and fellow survivors!
Happy New Year!

Heather & Shane

12/14/2011

This week has been a roller coaster ride of ups and downs combined with the usual stress of the holiday season: sending out Christmas cards, lighting the house, buying presents, and preparing to head across the state to see my family. In the midst of the holiday festivities, my usual checkups and appointments have been taking place in the background. Monday, I met with Dr. Niak, my surgeon for my 6-month exam. She checked for lumps and bumps and responded that everything looked “good”. Thanks to everyone for the comments on Facebook to this post! My second appointment was, however, not so uplifting. I met with my plastic surgeon and she recommended a revision surgery to correct some “issues” she’s unhappy with, she also found a spot on my scar that looks “suspicious” that she wants to cut out and send to the lab for testing. I’ve heard that when cancer comes back after a mastectomy it most commonly comes back in the scar. Of course, this has me going out of my mind. I’m trying to keep a positive outlook until I know for sure that I have something to worry about. Shane thinks that if Dr. Thaker was really concerned, she would have taken a biopsy immediately instead of waiting until my next surgery. I feel like this is something I can hang my hat on until I know differently.

I have a meeting with Dr. Luoh, my oncologist on the 28^th of December for another checkup and to discuss the possibility of adding Zometa to my current treatment regimine. News out of the 2011 San Antonio Breast Cancer conference is showing promising results in young women who take Zometa for 3 years. Apparently, the drug is proving to be as effective as chemotherapy in some cases.

Speaking of drug effectiveness, Shane and I made the decision last month that I would drop my trial drug (Neratinib) as we were sure that I did not receive the actual drug. The comedy of us trying to determine if the pills were the actual thing should have been parodied on Saturday Night Live. At one point, we had multiple experiments going at Shane’s parent’s house.

I have been looking into a vaccine trial at the University of Washington, but have decided to wait until after January to decide where I want to go with my treatment. In the meantime, I’m going to use diet and exercise as much as possible to control my risk.

Fears of reoccurrence aren’t the only excitement Shane and I have been going through in the past week. Tuesday night Kennedy got on the coffee table and drank almost all of Shane’s Tom and Jerry (complete with Rum). We called the emergency vet and were told to watch him and if he became too “drunk” that we would need to bring him in to be monitored. He never got too bad, but we monitored him pretty closely all night and guided him as the poor little guy swayed his way around the house. He got dinner twice and lots of treats to try to soak up the alcohol. So glad that he is ok and we didn’t have to go to the ER. Last night we woke up around midnight to hear water running in the pipes of the house. We were sure that a pipe had broken and we were going to have to shell out the money to have repairs done. Shane ran outside to turn off the water at the source while I searched for a flashlight. In all the excitement, Shane left the door wide open, allowing Finnegan to escape and run away (again). Luckily, the night ended with the discovery that it wasn’t a water pipe that broke, but rather a part to our sprinkler system that hadn’t been turned off, and Shane caught Finnegan before he disappeared into the night (again). This morning, on the way to work, with my mind on many other things, I ran into the pickup in front of me at a stop light. While it didn’t do any damage to the pickup, my car is in need of some serious repair! Thank goodness for our super-agent Richard Hansen!

Regardless of all of the craziness that December has brought to us, I am constantly aware of how blessed I am to have the life I have been given. Even though many people I know are moving on in ways that we might not have the opportunity, I know that my life is very blessed and very complete. I am also so grateful to have been given the chance to meet so many amazing women through the Young Survival Coalition. There have been so many loses this year, and many of us are helpless and in despair as we watch our closest friends and confidants lose their battle to cancer. Marie, and all of the other women who have reached this point, I am praying for a miracle for you and your family. You are so loved.

I know that my experiences over the past year have changed my outlook on so many things. I cannot wait to see my family over the Christmas holiday. It is our families and our friends that make our lives worth living and who will be there to fight with us when things get tough. No matter what, the things in our lives, such as cars, and sprinkler systems, will never be what make us fulfilled. I’m so glad my life is full of the things that matter: an amazing husband, a loving family, and many wonderful friends.

Wishing everyone a very Merry Christmas and a New Year full of the things that matter.

All our love,

Heather & Shane

Warning: This post contains too much information.

I can’t believe that I’m praying for diarrhea. But I am. I started my clinical trial yesterday morning. Six oblong salmon-colored pills at 11am. Nothing. Six more pills at 7:00am this morning. Nothing. Every gurgle after a meal is hope that I might get diarrhea.

90% of people who get the actual drug experience Diarrhea. Explosive, uncontrollable, diarrhea. Basically, if you don’t you can be 90% certain you didn’t get the trial drug. Not having the trial drug means a year of tests and follow-up for nothing. The only time a person wishes for explosive
diarrhea is when they have cancer. Please pray, wish, hope, chant (whatever you do) for diarrhea.

10/13/2011

Today started out bright and early for us with a trip to OHSU. We met with Dr. Thaker, my plastic surgeon and she checked my incisions and gave me the thumbs up. We looked at some of original pictures that were taken before my mastectomy. I can't believe what changes my body has gone through over the past year. We planned a follow up for two months to graft nipples and consider any revisions once everything has settled. Right now I can already see revisions that I think need to be made, but I understand that it is likely the implants will settle and things will begin to look more natural. One thing that I'm excited about is being able to hug people without "violating" them with my rock hard expanders! Yay for squishy hugs!!

My second appointment was with the Oncology department to discuss my clinical trial. We went over all of the paperwork, discussed potential side effects, and finalized my start date for the trial: October 25th. We won't know if I have the actual drug until the side effects kick in. Since 90+% of the people on the drug have the side effects, its a pretty sure fire indicator that you don't have the placebo. Shane and I are keeping our fingers crossed that I get the drug.

My third appointment was an EKG/ECO for the study...which was surprisingly painful. One of the two tests involved an ultrasound wand jammed into my chest. While I know the tech had no way of knowing that I just had surgery on the 30th, I was still hoping she would be a little more gentle. I'm just hoping that the results come back good. Sounds like I'll become pretty familiar with this process once I get into the clinical trial a little further.

Another awesome thing happened today: I was able to get my final graduation evaluation. Guess what? I'm totally done with my classes!! I just have to write and present my project and finish 150ish hours of practicum time. I sent through my application for Spring 2011 graduation. I can't wait to hold my Master's Degree in my hand! It feels good to be moving toward finishing my degree and moving on from the cancer cloud. Even though I finished some of my courses while going through chemo, I felt as though I completely dropped the ball on my education since I was diagnosed. I'm so happy that I can finally look forward to my hard work paying off.

Life seems to be getting back to our new normal and we are happy to be living it together.

We'll keep everyone filled in as we get started with the trial. Please keep your fingers crossed and prayers going up that the bottle they choose to hand us is filled with the drug and not a placebo.

Hugs and love,

Heather & Shane

10/06/2011

I have good news and bad news....which would you like first?

The good news is that I'm still healing well and I have been released to work on Monday with some slight restrictions with lifting, etc...

The bad news? I received a call this morning that they are closing my clinical trial effective Monday. Yep, no more participants. They might still be able to get me in if I can get everything signed and satisfied by tomorrow. Its so discouraging because I have been following this clinical trial for close to a year now and have been entirely sure that this is the trial that I NEED to be on. Unfortunately, I might be starting my research for a clinical trial all over again. I'm so glad, though that I pursued this with the speed that I did. Both Dr. Luoh and the clinical trial coordinator indicated to me that I had over a year to enroll in the study and that I shouldn't be in such a hurry to get on the roster. I guess I subconsciously knew something that they didn't...or was being pushed by something higher than me to get my enrollment done.

Please keep good thoughts that I'm able to get enrolled and get the drug for the next year before the study closes.

Just found more information on the closing of these trials: http://www.dailymarkets.com/stock/2011/10/05/puma-biotechnology-announces-licensing-agreement-with-pfizer-for-the-development-and-commercialization-of-neratinib-an-investigational-pan-her-inhibitor-closes-55-million-private-placement-and-comp/

10/04/2011

I am 4 days out from my reconstructive surgery today. Everything went well, although things are still settling so it’s hard to tell what the final product will look like. The scars are “re-opened” and look similar to how they did after my initial surgery. I also have a new scar where my port was removed. I’m hoping it will be less noticeable than the port itself.

It’s been hard to go through some of the similar physical limitations that I had last year in August. For most of the weekend, Shane has been helping me up, helping me bathe, and cooking/cleaning/waiting on me. I’m not sure what I would do without my amazing husband, but I do hate having to be babysat. Yesterday, my pain started to reduce slightly and I have been able to lift myself and move around the house pretty well. I still get tired easily, but for the most part I’m doing great.

We have a follow up with Dr. Thacker on October 13th, as well as an EKG and a meeting with the Clinical Trial coordinator at OHSU. I’m also supposed to call Dr. Thacker Thursday regarding whether or not I can return to work on Monday. I’m assuming she’ll have no problem with it. This Thursday we are also going to Eugene to meet Dr. Kaszor in person. Dr. Kaszor is our naturopathic oncologist who we have only met with via phone up unto this point. I’m excited to meet with her and talk about our next plan of action to avoid this cancer returning. Gotta hit it from all sides! ☺

On another note, Shane took me to see the movie 50/50 today. It’s definitely a movie I recommend, especially if you are a survivor. The acting is great and it’s pretty realistic, funny and heartbreaking. I definitely had moments of tears and moments of laughter, but that really reflects this journey pretty accurately anyway. I think this might be the last movie I watch for a while – I’ve been watching movies straight since Saturday morning (in between long naps of course) and am completely stir crazy! As soon as I have the energy to get out of the house and take my dogs for a walk, I’ll be there.

Wishing a speedy recovery to all my girls who are currently or recently went through surgery. So glad to be on the other side and workin’ with softer “pillows”!! ☺