Saturday, December 31, 2011

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 6th, 2011 I finished my last chemotherapy. This year, January 4th, 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

Wednesday, December 14, 2011

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 28th 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

Wednesday, October 26, 2011

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.

Thursday, October 13, 2011

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

Thursday, October 6, 2011

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/

Tuesday, October 4, 2011

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”!! ☺

Friday, September 30, 2011

09/30/2011

I'm writing this from the pre-op room, ready to get to my exchange surgery starting at 10am. My IV doesn't hurt this time, so we're off to a great start.

More info to come!!

Thursday, September 22, 2011

09/22/2011

Just a little over three hours until my final Herceptin infusion. Its such a bittersweet time in this whole journey. I think if I could afford to, and the medical community would support it, I would just continue the Herceptin until I couldn't anymore. I know they say there is no benefit to another year, but I'm such a "more is more" thinker. I've changed my diet and lifestyle for the most part- with a couple big slip ups in the past week. But I know its going to be my actions and lifestyle from here forward that keep fighting without the drugs.

Hopefully, I will be one of the lucky women randomized to the Neratinib on the trial. This remains to be seen. For those of you with good vibes, please send them toward OHSU, for those with prayers, we need those as well. We have yet to determine what plan "b" will be.

This week has been a roller coaster, happiness about the end of treatment, fear about what is to come, sadness over the loss of a friend and fellow survivor, and appreciation for all of the support I've received from my friends and family. I've even had the opportunity to foster some new friendships with an amazing couple who knows this battle even better than we do. Next week will be my final surgery.

There isn't much to do this month except look back and realize how far we've come. Since I was diagnosed, we have celebrated our 3rd and 4th wedding anniversaries. Shane has completed college and just got a new job as a Counselor. I have finished all my Master's level coursework, changed jobs and began mediating with Neighbor to Neighbor. We have held each other up through a major surgery, I have gone from hair to no hair to hair. We have driven to OHSU hundreds of times, met hundreds of people, and felt so much love from people we already know. We have cried ourselves to sleep some nights, been elated at how blessed we are, and sat confused at what's next. Regardless, we are here, together, at the end of all of this treatment and all we can do is start our normal lives again and hope and pray that history doesn't repeat itself.

Today is a day of celebration and hope for us as we start our next journey. This is not a time to take things for granted - and I needed that reminder this week. My friend Claudia posted that we should never take second chances for granted, and there wasn't anything else I needed to hear at that exact moment. I won't be taking this chance for granted! Thank you to everyone who has touched us in one way or another for getting us to this point.

Love and hugs,
Heather & Shane

Saturday, September 10, 2011

Its been over a month since Shane and I have posted anything to our blog, but that isn't to say that there haven't been updates in our life. Mainly, we have just been enjoying whats left of the summer and planning our future now that Shane is finished with school and i'm almost finished with treatment. September 22nd is the official last date of my treatment. I'm excited and scared to say goodbye to Herceptin, as it has become my security blanket in so many ways. As I've mentioned before, i'm planning on jumping into some clinical trials as soon as they'll allow. My exchange surgery for my new "squishy foobs" will be September 30th. I'm likely going to be out of comission for about a week afterward, but am hoping that the recovery will be relatively quick and I can move forward with life AND WITHOUT EXPANDERS!!! There are so many things I can't wait to do: sleep on my stomach, wear a shirt without looking like I have oranges shoved under my skin, give someone a hug and not worry that they think i've stuffed my bra with rocks, and finally begin to make peace with what my body is going to look like from now on. I have the utmost faith in my amazing plastic surgeon, so I know she's going to do the best she can with what I have (or don't have).

This coming weekend is the Komen Race for the Cure in Portland. I don't have a team setup this year, but Shane and I are planning on walking and hopefully being joined by some family and friends. I've had mixed emotions about the Komen Walk because of thier focus on "awareness" as opposed to "curing". I mean, the truth of the matter is, a corporation or business can't make money on breast cancer if it doesn't exist anymore. And trust me, I'm well AWARE that it exists. Awareness may have been the reason I caught my BC before it became late stage...unfortunately, it doesn't stop my breast cancer from Metastisis to late stage anyway. I'm not sure that many people are aware of this fact. Basically, people seem to believe if you catch it early you're fine. Thats not always true. To hell with awareness, in my opinion, lets work on funding some research so no one EVER HAS TO BE AWARE AGAIN. But, in the meantime, Komen and I will continue our love/hate relationship and i'll support them as long as they are funding some research and helping those women who may not have other resources. If you are planning on giving a significant amount of money to Breast Cancer, however, I would consider looking for a non-profit that supports research. Research is where the cure is, not just more of the same.

The walk is always an amazing inspiring event, however. There are thousands of survivors there who have taken this disease head on and won. There are also thousands of women there who are dying of this disease and facing it with strength and courage every. single. day. I feel so connected to all of these women because we have all experienced, and continue to experience something that is impossible to explain. We have all had our dreams shattered in one way or another, and we have all pulled ourselves up by our bootstraps and moved forward. I love my fellow survivors - they know a part of me that no one else in the whole world can understand.

In other life and cancer news, Shane and I have started a new diet/lifestyle that is really supposed to be a huge hit to my cancer-issue. We picked up a book at Borders (which is closing BTW) called Life Over Cancer. The book is written by Dr. Block an oncologist who started the Block Center for Integrative Medicine. The program gives recommendations for diet (vegan except for Fish), no alcohol, supplements (such as fish oil, indinol-3-carbinol, etc...), exercise (daily), and prayer/meditation. Shane is following the diet with some modifications just to be supportive and I am trying to follow it to the best I possibly can. So far I have lost 3lbs of my chemo weight and exercised every day but one this week. I think the program is going to be great for me, but SOOOOO hard to follow.

Anyway, I'm celebrating my last treatment with dinner with my Alice then a Beaver game with my mom, Shane, and my amazing Grandad. We are going to have an amazing time together, as we always do!

I hope everyone is well. Please keep us in your thoughts and prayers as we go through my final (hopefully) surgery and begin the next phase of this journey.

Much love,
Heather

Thursday, July 21, 2011

07/20/2011

I read a post on a friend’s caring bridge site the other day that really brought some things into perspective. She really said some things that made me think about my situation regarding cancer and some of things that make my situation so real. Her words were “please God, I don’t want to die young”. I think reading those words made me realize just how hard it is to have cancer as a young person. Of course, I’m not saying that having cancer when you’re older is any better – but it is different. You’ve likely had the chance to have children, purchase your SECOND home, celebrate your 10-year wedding anniversary, etc… There is so much life lived between the ages of 30 and 60 (the age after which breast cancer is more commonly diagnosed). I couldn’t agree with my Young Survivor friend more, I so badly don’t want to die young. There are so many things I want to do in my life from here, places I want to see, people I want to meet, and chances I need to have.

The truth is, the last month I have been really great at forgetting that I have cancer. I started a new job at Chemeketa Community College and I feel like I’ve really started over. I don’t think about cancer at work like I did before. I guess probably because my office and my surroundings don’t remind me of the chemo days and the hours spent getting radiation. I’ll never forget receiving the “you have cancer” phone call while standing behind my desk at work. I walked out of my office door only to find that everyone else had left for a moment. I was hysterical and fell into my friend Sue’s arms as soon as she came back. WOU was cancer to me and walking away has re-affirmed my life pre-cancer. But its not just work, home has felt less cancerous as well. I’ve been exercising in the mornings and doing agility. I have hair on my head and my clothes are slowly starting to fit again. When I look in the mirror I don’t see the cancer anymore. I know September’s surgery will be the last step in feeling normal again. The thing is, that I don’t feel like the pre-cancer me exactly. I feel like a better version of that person. Like I’ve learned so much about life that can’t be learned in any other way. I feel like I appreciate the people around me more and the chances I’ve been given. It’s my daily reminder to not take anything for granted.
Dr. Luoh said to me this morning that he wanted to watch my bone density because I’m going to be around for another 50 or 60 years. Even though I know he probably doesn’t really believe that, I’m taking it to heart and I’m going to run with it. I’m going to have the most amazing 50 or 60 years ever lived. I can’t reiterate my friend’s comment enough: I don’t want to die young.

So I suppose the positive take away is that cancer is becoming less and less the center of my life. I recently celebrated my one-year cancerversary. A year ago, I didn’t know if I would see that day. I don’t want to be too confident for fear that my confidence would bring the cancer-back (yes, I know confidence isn’t what causes cancer, but I’m superstitious). So, I’ll say that its always in the back of my mind, but is no longer the forefront of my world.

To all of the women who are diagnosed young, please remember that there is every chance in the world that we’ll survive this. Don’t look at the statistics – those are made from events in the past. The future is yet to be written and it’s ours to write. There are amazing people out there working for our cure – keep on pushing through and don’t ever give up. I plan to see you all in 50 or 60 years.

Friday, July 15, 2011

07/15/2011

Its been a while since i've blogged - not because there isn't anything happening in our lives, but more because the things that are happening are positive and not related to our cancer journey. This is all good news!
I've started a new job at Chemeketa Community College which i'm extremely excited about. It has been a good change for me and i'm very confident that I made the right choice in making a career switch right in the middle of my cancer treatment. As you can imagine, that was a very hard decision to make. Shane has graduated and is excited to be working his regular hours again. He's doing great things in the community and itching to utilize everything he has learned over the past 3 years.

Shane and I took a little vacation to California in late June and spent some much needed time relaxing. There was even a day on vacation that I forgot entirely about cancer. It was wonderful. We also took a week off after our vacation to spend time working around the house. We installed a tile backsplash in our kitchen and a drip system in our back yard. It was a lot of work, but the results are great.

Treatment is going good - nothing really to report. We had a slight scare at my last infusion as there was another "lump" found on my cancer side. While the ultrasound was inconclusive, the doctor reassured me that it was not cancer and most likely just scar tissue from surgery. All else is good! My last Herceptin infusion will be September 22nd and my exchange surgery will take place the first week in October. I'm so excited to get the exchange and start feeling like a "real girl" again!

Hope that everyone's summer is going well! Sending love!
Heather

Thursday, June 2, 2011

06/02/2011

Another Herceptin is in process (and I just want to point out that I got the window overlooking the dog park again. Someone obviously loves me. There's a beautiful chocolate lab out there chasing his ball). Anyway, I'm drinking in all of it's HER2 killing properties in hopes that over the last 5 treatments the Herceptin will take care of any possible breast cancer still floating around in my system. My last appointment is scheduled for September 22nd. Technically, after that point I'll be done with the adjuvent part of my treatment - only to be followed with my exchange surgery and hopefully the creation and tattooing of nipples (sorry if that's too much information, but its the reality of the breast cancer patient)! I've also learned that September will be the month I have my braces removed from my teeth. New teeth, new boobs, new outlook! Its going to to be a hell of an end to one of the hardest years imaginable.
I met, as usual, with Dr. Luoh this morning. He went through the usual questions and then waited patiently for my to ramble through my weekly concerns of Metastasis and my analysis of recent studies and possibilities for my treatment. He must find me the most obnoxious and insane patient ever. I discussed my recent back pain - which seems to be getting better with chiropractic treatment. He assured me that he was confident my pain was not related to the return of my cancer, and he laughed at me while moving only his lower jaw, similar to how a puppet would laugh. I've often wondered if his laugh is forced, but after watching his facial movements I'm convinced that this is, in fact, real emotion. I then brought up the possibility of adding Zometa to my treatment regimen. Studies in recent history have indicated that Zometa might protect against bone mets, but most recently additional studies were performed that indicated that breast cancer patients (especially those who are young) were not benefiting from the Zometa. You can read here for more information: http://www.medicinenet.com/script/main/art.asp?articlekey=123253
Anyway, Dr. Luoh is going to do a bone density test to ensure that everything is ok. He said that he could use Zometa preventatively if it is something that I wanted to work with, but I'm not sure that i'm interested in taking another drug that so far does not demonstrate the kind of results that I could benefit from. I believe that Tamoxifen also has some bone building properties (hence the pain in my bones and joints all the time) that may be beneficial to me.

We also discussed the ever-changing clinic trial issue. I mentioned a couple of clinic trials, one in Berkley, CA and another in Tacoma, WA that are testing HER2 vaccines. I laid out my concerns about the vaccine trials vs the Neratinib trial. In the Neratinib trial, we are aware that the agent directly kills HER2 - but there is only a 50/50 chance of receiving the drug. Dr. Luoh told me mostly what I have already heard - that so far the clinic trials for HER2 vaccines are not going well and that while this vaccine could be the "magic bullet" it was unlikely. Of course Dr. Luoh can't tell me which trial is going work, otherwise they wouldn't be trials, they would be standard of care, but our discussion has me leaning strongly toward the Neratanib. Since the Neratanib has pretty significant side effects, I should know immediately if i'm receiving the actual dose or the placebo. He said I can enter the trial as soon as i'm done with Herceptin in September. YAY!!! Even if the Neratanib only decreases my re-occurance chances 1%, to me, its better than nothing!

The last thing that we discussed is my mild lymphedema, which seems to have gotten worse over the past couple of weeks. I have slight swelling and some cording in my left arm that is uncomfortable and often painful. Luckily, the condition hasn't interferred with my ability to use my arm or my range of motion in any way. It looks like i'll be headed back to my physical therapist in Salem to work through these quirks. I'm not excited to be adding lymphedema to my list of conditions, but I suppose I'd rather be living with Lymphedema than not at all!

I'm hoping that eventually this blog will chronical things far more entertaining and fun outside of the cancer world that Shane and I have been living in since June of 2010. We look forward to the future and remain hopeful that eventually our lives will get back to normal! We are excited to finally meet and get to spend some time with our first niece Amelia Ann McDaniel (congratulations Nick and Heather!). We are also excited to celebrate Shane's graduation with his Master's of Social Work on the 11th of June. I am so proud of my amazing husband for his accomplishments. I know he is going to do amazing things in his lifetime!! There are many things to look forward to and we look forward to continuing to share our life and updates with you!

Much love,
Heather

Thursday, May 26, 2011

05/26/2011

I'm terrible at keeping this blog updated, but just wanted to inform the internet that I HAVE HAIR!! Its still unbelievably thin, but i've been without my wig or a head scarf for about a week now. Its definitely nice to be able to walk around without worrying whether or not your hair's straight on your head!

Other exciting things: Shane is graduating in less than 2 weeks, I just finished my final class for my grad program and we are moving on! Now if we could just get some sunshine all would be good!!

Thursday, May 12, 2011

5/12/2011

Posting this a few days late as blogger has been down over the weekend:

Today i'm at OHSU all day getting my Herceptin infusion and meeting with Dr. Luoh for a checkup. Things look good, according to him. I only have one mugga scan left and as long as my ejaction fraction (sounds dirty doesn't it?) is still ok then i'm going to be getting the remaining Herceptin infusions. I should be done September 15th!!! After today i'll have one more fill with my PS on the 19th of May and then a check up with my surgeon on the 2nd of June. My exchange surgery will likely take place in late September, early October depending on how things go. These are both VERY busy times for work so i'll have to know exactly what my time out will look like prior to setting a surgery date. Dr. Luoh confirmed today that when we have my exchange surgery that my port can also be taken out at that time! This news makes me elated because even though logically I know I have been told that the port would come out, I had a fear that they were going to consider me high risk and make me keep the port in case of a re-occurance. The port has been my biggest point of concern since starting this process. When I was still meeting with the surgeon in Salem, my concern was greater about the port than the actual surgery. It wasn't until my oncologist told me that the port was removable did I finally start to breathe again. Since I original thought I would be spending the rest of my life with this little critter - the thought of it being gone in less than 5 months makes me giddy! This is the best photo and explanation of a port I have found. This photo is of the port actually accessed: http://www.flickr.com/photos/goellnitz/2391111652/ It doesn't look this scary all the time. :-)


The other good news is that after all my freaking out about Tamoxifen and my lack of side effects, Dr. Luoh confirmed that I am a "normal" metabolizer of Tamoxifen!! This means that I can have as few hot flashes as I want and still know that the Tamoxifen is working in my body! THANK GOD. Dr. Luoh had previously indicated that a lack of side effects typically is associated with Tamoxifen not working well. I have had next to no side effects and have been extremely concerned since my Estrogen positive status was 100%. This is good news!!! Yay!!!

Dr. Luoh also laughed at me today when I mentioned to him that I was having back pain and thought that it might be cancer in my spine. He doesn't seem to think this is the case.

Tomorrow is also my birthday. In my case, birthdays have become slightly odd since cancer. This is my first birthday since my diagnosis. Every time I think about having a birthday I hear those stupid American Cancer Society commercials about celebrating more birthdays. Usually they have some celebrity sing Happy Birthday and then post some hubub about "Helping people celebrate more birthdays". The first time I saw one of these commercials I cried , similar to how a child would cry after seeing the boogieman. I hate them and I wish they would take them off the air. I don't want more birthdays...I want ALL OF MY BIRTHDAYS. More birthdays is simply not good enough.

Wednesday, May 11, 2011

Tuesday, May 10, 2011

05/10/2011




Things have been so busy in the past few weeks that I haven't had time to sit down and write a blog about everything thats been happening. The first of May I went to the NBCC conference in Washington DC. I got to spend some amazing time with family and also see some great sights in the DC area. One of the great things about the trip and specifically the conference was meeting amazing women who have battled this disease and so far, won!!! There were so many AMAZING survivors who warmed my heart and changed my outlook. I was able to meet Dr. Slamon and have my photo taken. I even shook his hand and thanked him for being the force behind the drug that could save my life and has already saved so many women.



I also learned about the prospect of ending breast cancer by 2020!! I could go into the explanations of how this could be achieved or what each of the workshops at the conference was about, but instead I think its best to link you here:




This is important - so please read and please take a part if you can in making this dream a reality!! on Tuesday of the conference we lobbied congress regarding the Department of Defense Budget for Breast Cancer Research and the need for our representatives to support this deadline and "The Accelerated End of Breast Cancer Act". It was such an amazing experience to walk the halls of Congress in Washington DC!

On a personal note, I am doing well; continuing Herceptin treatment and Tamoxifen. So far, i've had minimal side effects from the Tamoxifen. I should find out on Thursday if I am a good Metabolizer of Tamoxifen (historically associated with a better outcome). Keep your fingers crossed!

I also started taking regular courses again this term. Being in graduate school again has made me realize just how hard this journey had been on my intellect and just how badly chemotherapy has left me in a mental fog. I still find myself searching for words and responding with very surface answers to questions I should be able to think deeper about. Shane is helping me write my papers by going through each sentence word for word. I'm not sure what I would do without him! The doctors say the fog will lift with time. No one has yet to give me an amount of time. I plan to start reading more and playing memory games in order to hopefully re-activate my brain cells. Until then, oh well!! I hear ignorance is bliss!!


Much love,
Heather



Thursday, March 31, 2011

03/31/2011

It’s hard when you are in for the fight of your life to let the reality of the fact that you have cancer really get to you. I don’t mean to devalue the fear and insanity that we are overcome with when we are diagnosed, but at least for me, these past months have been a blur. I haven’t had time to break down and fall apart very much because I’ve been so focused on getting through chemo, radiation, surgery, and holding down my job. The doctors told me when I was first diagnosed that this would happen. Treatment becomes like a second job that won’t let you focus on the cancer. It exhausts you and forces you to spend time you would normally spend crying alone in the bathroom, just fighting to get enough energy to walk. When you're done, you're often left standing alone: a different person inside and out.

This week, I think I finally settled into the fact I have cancer and I am following up that revelation with the best way I know how: falling apart. I’m still very much in active treatment, but it isn’t daily anymore and it’s becoming a reality that the changes that have been made in the past 6 months are permanent. I think it scares me more now than ever to sit down and look at my body, the scars from the surgery and the missing pieces, to realize how hard all of this has been on my body, and how my world has changed. Even though I’m working out 3x a week now, it’s taking me much longer to get in shape. Its hard to know that I’ll probably never be able to sleep soundly again, and after recent tests of my FSH levels it is becoming more likely that I will not come out of menopause. I have to realize that no matter how hard I try to retain it: I’ve lost a huge part of myself.

I’ve talked to some other survivors lately who agree that one of the hardest things about this journey is that now that the major treatment is over, people expect us as survivors to simply get on with our lives. We are, after all, done with the hard part of cancer, right? To me, the hardest part of this journey has just begun. The part where I wait for the cancer to come back, the part where I worry if I’ve done everything I can to make sure that I don’t lose my life, the part where I relearn to love myself for who I am now. I guess what I’m trying to say is that things aren’t going to get easy now just because I have hair on my head and I’m not hooked up to an IV. The immediately apparent visual indications of the cancer will likely fade away, but most survivors are still dealing with so much. I still have no guarantees that I’m going to live a long life and I never will. I still walk around everyday with a 20% recurrence rate over my head. Until science gets smart and figures out how to cure this crap, the recurrence rate will never go away. I will still spend sleepless nights waiting for results from a scan, cry myself to sleep because of an ache or a pain and forever fear that cancer is going to strike again. Long after the end of chemo, I’ll likely suffer the effects of the mental fog known as “chemo brain” and I will forever see myself in the mirror with someone else’s body. Its amazing how quickly the persona we create everyday of our lives can be taken away and how rapidly a person can be forced to face the world with the mask. Its amazing how quickly you can become bald and overweight, how normal the idea of nipple tattoos and silicone implants can become; how something like looking in the mirror and seeing a port in your chest can become what you expect. The funny part is, my life will never get back to the normal it once was, and I’m now grappling with the reality of a "new normal". Within this new normal, I’m going to endure the fears and the physical and mental changes the best way I know how. All I ask is for patience and grace while I adjust to my new life and understanding that while I might not be in the middle of chemotherapy or radiation, I still feel as though I’m standing in the middle of my own personal war zone.

It is true that nothing will ever be the same and no matter how hard I try, I can never go back to being the “me” before cancer, but In some ways that’s a good thing. I know its cliché, but I’ve learned a lot about myself in the past months. I’ve also learned a lot about the people around me. I’ve learned that there are people who will stand beside you when you need them the most, and I’ve learned that there are people in this world who will drop off the face of the earth when you’re at the darkest point in your life. Most importantly, I’ve learned which one of those people I want to be when my friends or family are going through a rough time.

Thanks to you (you know who you are) for being "those people" who have stuck around through treatment and will continue to be there to hold my hand a guide me when I have days when I feel like I don't want to take another step. Thank you for understanding that the journey of breast cancer doesn't end here and that I need and appreciate your love and support more now than ever.

Hugs & Love,

Heather

Thursday, March 24, 2011

03/24/2011

I am happy to say that I'm healing from my burns a little bit everyday. I am able to sleep on my side again and other then the intense itching, I feel like I'm in a good place.
Last Friday I went to the RO's office only to find out that the burns that I had been complaining about to the nurses were actually 3rd degree burns. The RO who I met with is a transfer from OHSU to Salem Hospital. It only took her a couple of moments to diagnose my tender, red, boiled skin as a third degree burn. Thanks. That would have been good to start treating a few weeks ago!! I took some photos of the burns, but I'll spare you the disgust of actually having to see them! Either way, they're better!!

Day before yesterday I started Tamoxifen. I swear the doctors should not put me in change of my own treatment. I keep thinking to myself that I should take 2 pills a day instead of just one. I mean, if one works two has to work better right? I think the only thing keeping me from downing the whole bottle is my fear of side effects. That, and Dr. Luoh would likely be very angry! :-)

In other exciting news, Shane and I picked up a new foster puppy last night. His name is Beegley, but Shane and I are calling him Baigley. We are notorious for changing the names of our foster dogs. Then again, we are notorious for adopting our foster dogs too! :-) I hope his "forever home" comes along soon! Anyway, Baigley was introduced into our pack last night with a bit of a rough start. Although Kennedy is more than willing to play and rough house, Finnegan is not taking to him very quickly. In fact, Finn is playing the "grumpy old man" card.
I don't think Finn was prepared for us to bring another pup in the house - and obviously he doesn't remember what a turd he was as a pup! I guess Shane and I didn't really remember what a turd he was as a pup either, given that we were more than willing to bring a 6 month old into the house. Nothing makes me feel like cancer has slowed me down like puppy energy. Man, we're getting old!!

Anyway, hope everyone is having a wonderful Spring Break! Sending out love and hugs to our friends and family!

Heather & Shane

Tuesday, March 15, 2011

03/15/2011

Let the healing begin! Despite soreness around my ribs and the consistent pain under my arm, I have hope that my skin will heal quickly and the issues caused by radiation will soon subside. I woke up this morning with the entire radiation "square" around my breast and under my arm soaked through my shirt. This happens a couple times a day, which makes it hard to keep up with laundry (among other things). I think this is probably a bad sign, but i'm hoping they'll be able to nip this in the butt on Friday when I go in for my skin check. I was given Silvadine to help with the "weeping" previously, but it doesn't seem to help. Plus, as soon as I put clothing on the cream transfers to my shirt and the silvadine doesn't stick to my skin. Ah, the pains of healing!! Either way, I know it has to get better rather than worse!

Also an update on the NBCC conference - I have booked my flight!! I will be headed to Washington DC for the conference in April and ready to meet Dr. Dennis Slamon who discovered Herceptin (among hundreds of other amazing people dedicated to finding a cure)!! :-) If you would like to learn more about the conference or NBCC there is information here: www.breastcancerdeadline2020.org

Thursday, March 10, 2011

03/10/2011

I am hooked up to my Herceptin infusion as I type this. I'm not even sure which # this is as I stopped counting when I realized that the Herceptin doesn't really cause any side effects and that it will be my saving grace. I'll be done sometime in September or October, I think. Herceptin is quite frankly my favorite part of this journey. Its fast, it doesn't hurt, and its quite possibly the one component that is going to save my life. Also, I get to see my favorite nurse, "Net" and "John" the CNA. Today was a particularly interesting trip to the chemo room as someone was having some severe issues with their chemotherapy and was in the bathroom vomitting and unable to get up. But get this, the nurses had to call 911. I'll be honest, I was really confused. We are currently at Oregon Health & Science University's Center for Health & Healing which is connected to the Hospital by tram...but they are calling 911. For paramedics to come take someone from one part of the hospital to another part of the hospital. You would think they could have just called the hospital directly to send down an ambulance or put the person on a stretcher and taken them up by tram (which would have been the quickest route since I was able to finish my infusion, check out, go downstairs, get in my car, drive out of the parking lot and the ambulance was just getting there). Anyway, interesting scenario to say the least.

On that note, I met with Dr. Luoh this morning before treatment and, as usual, broke out my paper filled with questions for him. Normally, my questions are written on something I found in my purse: a gas receipt, an appointment reminder card, or the occassional envelope. There are always more questions than I really feel comfortable asking and they are usually scribbled akwardly because I attempt to write them all down while driving to my appointment. Many of them consist of the same questions I asked the Nurse Practitioner previously and just want to test everyone to ensure I get the same answer. Yes, I am the patient from hell.
On my gas reciept for today: Tamoxifen Metabolism, Clinical Trials, Ovarian Suppression, Her2 vs ER+ and Tykerb for early stage BC. Let me say first that I feel sorry for my amazing oncologist. I put him through the ringer every time I see him. I know he must think to himself "god, I wish that girl would stay off the Internet so I can do my job", but instead he just responds "very good questions, Heather. I see you have been doing your homework". He is so patient with me, and openly laughs at me because I'm spastic and passionately insane about saving my own life. He told me multiple times today that "we will talk about that when the time comes"..... I guess I'm getting ahead of myself.

So here's the lowdown on some of the issues that I discussed with him:
Tamoxifen: I have a prescription for Tamoxifen in my hands right now. I am supposed to wait a week for my body to heal from radiation before filling the prescription and starting down the road of unknown side effects. For those of you reading who don't know what Tamoxifen is, here is what Wikipedia tells us: "Some breast cancer cells require estrogen to grow. Estrogen binds to and activates the estrogen receptor in these cells. Tamoxifen is metabolized into compounds that also bind to the estrogen receptor but do not activate it. Because of this competitive antagonism, tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor. Hence breast cancer cell growth is blocked." I have heard many women also describe Tamoxifen as "a living hell". Tamoxifen is known to cause hot flashes, irritability, insomnia, weight gain, decreased sexual drive, and overall feeling of preference for death. Because I am 100% estrogen/progesterone positive, Tamoxifen is not a choice for me. I HAVE to take Tamoxifen for at least 5 years in order to increase my chances of survival.
Dr. Luoh did some blood work to ensure that I do not carry any genes that pre-dispose me to blood clots (another side effect of Tamoxifen). Apparently these are new tests that are being recommended by some studies done at Harvard University which can determine whether or not the drug is too risky for me to take. This is another reason that I LOVE being treated at OHSU. They are always on the cutting edge of treatment and following the studies as they are released. Dr. Luoh does not, however, run Tamoxifen metabolism tests and said that if I do not have side effects from the Tamox then he will consider running some additional tests to make sure that I'm metabolizing it. Basically, the worse I feel, the better chance that its working. It looks like the studies that came out of the San Antonio Breast Conference this year refute that poor metabolizers will receive a decreased benefit from Tamoxifen. Dr. Luoh explained this research to me, but honestly, my ability to understand what he is talking about most of the time is limited (these are the reasons that Shane needs to be in these meetings with me!!). Regardless I know the following: Tamoxifen. Next Monday. Start.

Clinical Trials: Dr. Luoh expressed that he is more than willing to sit down with me and compare all of the trials that I am interested in when I'm ready to do them. He seemed to lean toward the Vaccine trials, but said that he would support whatever decision I made and would help me decipher my options. He is running the Neuratinib trial at the moment and said that I would definitely qualify for that trial once I'm finished with Herceptin. The hard thing is that the Neuratanib trial is a double-blind study, so there is a 50/50 chance I won't get the medicine. The other hard thing is that many of the Vaccine trials have not had promising outcomes. My guess is that I'm only going to get one shot to do a trial (you skew the results if you've already done other trials). Ten years ago some women in my situation made the decision to do a HER-2 trial for a little known drug called Herceptin. Turns out it saved their lives. I surely don't want to miss the next Herceptin!! :-( More to come on this when I make my decision about trials (probably September/October).

HER2/ ER+: One of the things I've been hearing a lot about lately is the idea that HER2 breast cancer that is also estrogen positive acts like HER2 and may not need to be treated as estrogen positive. Dr. Luoh confirmed that this is something that is being discussed and likely very possible, but until they have additional research he is adamant that I complete Tamoxifen and possibly do ovarian suppression.

Tykerb for Early Stage: Basically, Dr. Luoh told me that this isn't a possibility at this time and the closest thing would be the Neuratanib trial (which is a sister of Tykerb). Apparently the Tykerb isn't through trials yet for early stage and the company promoting Neuratanib is being very aggressive with their trials starting stage 4 and early stage at the same time. I guess I'll have to wait if I ever want to get Tykerb or I might not need it since Neuratanib is very similar.

Ovarian Suppression: Basically, this is waiting on whether or not I start menstruating again. If not, I won't need the ovarian suppression. Dr. Luoh did say that we could do the suppression for 5 years if we needed to. He hinged the suppression on the 5-year mark because, he said, that due to the aggressive nature of HER2 it is most likely to come back during the first 5 years. If it doesn't then my risk for a reoccurance decreases. Basically, I need to work extremely hard to get through these next 5 years!! The good thing about this is that I may not have to have an oopherectomy after all. If current research is correct, the 5 year suppression may put me over the edge into "somewhat" clear territory. Obviously, I know the cancer can reoccur at anytime, but this news is good!

The other good news is that I am done with radiation tomorrow!! My side feels as though it has been filleted (not sure if that is the correct spelling) and looks like raw hamburger meat. I have been taking pain killers and putting Zinc on the open wounds, but honestly I don't think anything but time is really going to heal these nasty wounds! Sunday night I was up most of the night trying to find a comfortable position and a comfortable top to wear. I stayed home Monday from work to catch up on my sleep and put gel packs on the wounds. I've been having flashbacks of sleeping after my mastectomy because I'm not able to roll over onto my side. One more day and then I can start the healing process! I know my body will be as happy as my mind!

..and for the FINAL good news this week....I have been awarded a scholarship to go to Washington DC for the National Breast Cancer Coalition Advocacy Conference in April. The scholarship pays for everything except travel. I'm really hoping to be able to attend, but with this week's expenses (fence blowing down, car costs), I'm struggling to find the cash to buy an airline ticket. We'll see how things pan out...either way I got the scholarship!! YAY!

We are one more step closer to the end of this journey. Hopefully by next year this time we will be able to start the process of putting cancer behind us and begin to regain trust in the future.

Much love,
Heather & Shane






Friday, March 4, 2011

03/04/2011

After today I only have FIVE radiation treatments remaining. Its a good thing!! My skin under my arm is currently peeling, blistering, and turning black. The pain from the raw skin has made it hard to sleep some nights and definitely hard to wear clothes because of the rubbing, but i'm on the home stretch so I know that I will be feeling better in no time!

Next week is Herceptin and my tri-monthly Mugga Scan. I am probably also going to be starting Tamoxifen and discussing Lupron with my Medical Oncologist.

All is good in the McDaniel household at the moment. Shane is finishing up this term and I have just started a workout routine including "Zumba" a couple nights a week and a step class. I hope this helps me get back down to my pre-chemo weight!

Thanks for all your thoughts and prayers.

Love,
Heather & Shane

Friday, February 25, 2011

02/25/2011

Today is radiation round #17. That means I only have 10 sessions left after today. Radiation has gone by quickly and pretty painlessly so far (knock on wood). Yesterday I met with my Dr. Henig and she checked my skin. Even though I told her that I did not have any pain, she was concerned with the red patch under my arm. My skin looks like I have been sitting in the sun for hours with no sun block. Dr. Henig provided me with some gel patches that are supposed to pull the heat from the burn and also reduce swelling. After last night’s treatment I used one of the patches and was pleasantly surprised at how soothing it was. I think I’ll continue the patches nightly until I’m finished with treatment!

I am experiencing some fatigue from the treatment, but nothing too severe yet. I think my body is still recovering from chemo, so most nights I spend on the couch watching Dexter and snuggling with Finnegan and Kennedy. The beagle boys are always happy to spend a few hours sleeping on the couch with me. Shane, on the other hand, has not been so lucky and has been working non-stop to finish out this term of classes. Next term will be his last and then he will officially graduate with his MSW. I am not planning on graduating this year, after all. With the upheaval of my life after the diagnosis and my chemo brain I haven’t been able to complete my thesis/project. I will, however, be starting on-campus classes again next term!
Really, I’m excited to get back to living life somewhat normally. I’ll see how normal things can be next month when I start Tamoxifen and probably Lupron shots.

Anyway, my hair has been growing, albeit extremely slowly. They say that a watched pot never boils…I’m pretty sure that my manic tendencies toward watching my hair has caused it not to grow. There are still patches of baldness all around the top, but little “prickles” are sprouting up elsewhere. Hopefully by May I will be able to celebrate my birthday with a new head of hair!

Much love,
Heather

Monday, February 14, 2011

A Note about my Valentine

Since the incarnation of Valentine’s Day as a Hallmark holiday, it has been the charge of the husband to make February 14th the day in which they go out of their way to do wonderful things for their spouse that they wouldn’t do any other day of the year. Many husbands send flowers, purchase decadent chocolates, or write heartfelt cards to show their spouse just how much they mean to them. Dinner is a formality where the couples gaze into each other’s eyes longingly. Valentine’s Day is a challenge to show just how good of a husband you are – something my husband doesn’t need to do. The last six plus months have been a reminder that while many other husbands are bringing home cards and flowers today to prove how much they love their wives, my husband has proved his love and devotion more than I could ever imagine.

Since June of 2010 we fought together to keep our heads up and our hearts confident that we will get through this time in our lives together. When other men could have bowed out, Shane has been by my side through surgeries to remove my breasts, weeks of helping me out of bed and to the bathroom, cooking every meal and cleaning the house, emptying blood-filled drain tubes from my chest, driving me to every chemo appointment and oncologist visit, taking notes, asking questions, and being my sidekick each day during my infusions. He has rushed me to the hospital in the middle of the night, held me close when I felt like I couldn’t take anymore, and pushed me to be strong when I needed an extra push. He has listened to me cry about my fears, divulge my insecurities, and simply fall apart. On this day, many men lament about how beautiful their wives are, but my husband has watched me gain 20+ pounds from chemo, lose all of my hair, and transform from the body of a normal 27 year old to someone who is scarred and misshapen without blinking an eye. If there was ever a question as to whether he truly believed the vows “in sickness and in health”, he has proven again and again that he has taken this marriage to heart. I know that much of my strength comes from him.

Today, and every other day of the year, I’m so happy and blessed to know that I’ve found my soul mate. In the midst of some of my darkest times, he has always been there physically and emotionally to support me in just the way I need it. In the happiest times, he is the one who I share them with. He knows my heart better than anyone else in the world because he is the one who holds it.

I love you Shane!! -Heather

Sunday, February 6, 2011

02/06/2011

Today, even though its Super Bowl Sunday, I'm spending the day organizing the house and getting it ready to be cleaned (YES - TO BE CLEANED!!) Thanks to some of the most amazing friends and co-workers in the world, my house is going to be cleaned until I can pull myself together from this cancer treatment! These angels went out and found me a housekeeper, called her references, and purchased me a gift card for housekeeping! I'm hoping to meet with her this week to give her a tour of the house and show her where everything is. This is going to be such a huge help for Shane and I since its been practically impossible to keep up with house work since my diagnosis. While I'm able to work full time, by the time I get home at night I'm exhausted. Shane is still working full time, doing his internship, and going to school so his days are extremely full and his weekends are spent catching up and then working on Sundays. This is going to be such an unreal blessing to us at a time when we need it SO badly! I can't say thank you enough!!

Just an update on radiation: I called OHSU Friday to discuss the possibility of getting the full dose of radiation and to get a second opinion from Dr. Marquez. Sierra (the most amazing Breast Nurse Coordinator in the world) said that she would contact my breast surgeon and they would discuss the case and let me know by Monday if a dose reduction is the smartest thing for me. Once again, I am so grateful to have the amazing team at OHSU on my side!

So far, the radiation hasn't caused any side effects. I am slathering the area twice daily with Calendula gel and Aloe Vera from the natural food store here in Salem. It seems to be doing the trick! Of course, I'm watching out for signs of lymphedema and any burning that might be happening. I'm expecting fatigue about half way through the process. So far, so good.

The nurses at radiation are wonderful and have been super helpful in making me feel comfortable under the huge radiation machine. It isn't the most comforting process, but it doesn't take long and with the exception of Thursdays I'm out of the hospital within 15 minutes.

On another note, I was asked by a Professor at WOU to be the "center of attention" at an upcoming Women's Basketball game. They are going to honor me, as a breast cancer survivor, at the annual "Pink Out" to raise breast cancer awareness. I feel a little funny about the whole thing because I don't technically think of myself as a survivor yet, but it does help raise awareness. I think its particularly important on a college campus where I'm just a little bit older than many of the women who will be attending the basketball game. It really brings to light the need for young women to do self exams and get checked! It CAN happen to young women!!!
Anyway, the most exciting part of this whole process is that my parents are going to come to the game to support me (and ensure that I don't pass out when I have to walk out in front of everyone and have my "story" read). The game starts at 5:30 on February 17th at Western Oregon University if you want to attend.

As always, thank you so much for all the love and support!
Heather & Shane

Thursday, February 3, 2011

02/03/2011

Hey everyone! Just wanted to update you on the recent happenings in Cancerland. Last week would have normally been chemo, but instead I just had the Herceptin treatment which i'll continue for 11 more cycles. While there I mentioned a nodule above my left breast that I had noticed in the last couple of weeks. My oncologist and surgeon both looked at the lump and then scheduled me for an ultrasound up on the hill at OHSU. Despite my worst fears coming up again, the ultrasound didn't find anything and the consensus was that the beebee-sized lump is just a mass of tissue from surgery. We are so relieved to know that it isn't a reoccurance!

Radiation started yesterday. I just finished with my second treatment about two hours ago. Things are going well so far. I have been putting Calendula cream and aloe vera on the radiated area twice a day. I'm not seeing any redness or irritation yet. Shane took me to Target last night to get some soft cotton tee shirts and some sweat pants to wear around the house after treatments. My appointments are in the afternoon, so I stop at the hospital on my way home from work around 4:30 each day to get treatment. The treatments only take about 10 minutes and I don't see or feel anything while getting "radiated".

I found out today from my Radiologist that i'm getting a "lighter" radiation for only 28 treatments because technically my stats don't qualify me for radiation and because she wants to ensure that the long term effects to my skin and reconstruction aren't as bad as they could be. I'm a little upset about this, firstly because I wasn't told that I would not be receiving the full strength treatment, but also because I think its important to hit this cancer with everything I can now. I didn't say anything to the radiation oncologist today when she told me about the treatment adjustment, but i'm probably going to call her tomorrow to talk about my options. At least having the conversation will help me sleep better at night!

We'll keep you updated as radiation continues!

All our love,
Shane & Heather

Monday, January 24, 2011

01/24/2011

Hey everyone! We haven't updated the blog for a while because, honestly, there hasn't been much happening in the cancer realm. I am feeling much better and know that things are only going to get better from here on out. I have been trying to walk with Shane or do yoga daily in order to get my strength back. Its amazing how my body has changed and become so inflexible since the surgery in August. I really haven't done much physically because right after surgery I started chemo. I am re-learning my body and trying to reshape it to the body I remember - only better. In mid February Shane and I are thinking about trying to ride the "Worst day of the year" ride in Portland. Its an 18-mile bike ride through Northeast Portland. I'm not sure yet if my body will be up to it, especially since I'm barely able to walk the two-mile loop at the dog park! Only time will tell! All of this exercise is only going to aid in losing the 17lbs I gained during chemo! Cheers to being able to fit into my clothes again!

I met with the radiology oncologist, Dr. Henig, two weeks ago to discuss "the plan". I will be getting "radiated" five days a week for 7 weeks (36 times). Most of the side effects involve fatigue and burning of the skin. I think our friend Faye said it best when she described the fatigue as your body being worn out from fighting all the damage that the radiation is doing to your body. In fact, the radiation will kill a portion of my lung. Dr. Henig said that I shouldn't notice the part that will no longer work unless I'm planning on running the Boston Marathon. I guess I should probably remove "run marathon" from my list of things to do in this lifetime! Luckily, the oncologist believes that they will be able to miss my heart so there shouldn't be any damage there! I need to save as much of my heart as possible to get through the Herceptin!! :-)

Thursday my Plastic Surgeon "deflated" my tissue expanders so that there would be more loose skin in order to avoid the radiation causing my skin to get tighter around the expander and also so that my "good" breast would be out of the line of the radiation beams. I am officially the only person I know who has gone from a DD to an A, to a B, then a C and back to an A again! Either way, Dr. Thaker, my plastic surgeon said that I will probably be able to have my exchange surgery in August or September once the skin is completely healed and we know that the radiation isn't going to cause a capsular contraction. I can't wait to see the final product and look half-way normal again!

Wednesday I will go in to get my tattoos, which the team will use to line up the machine each day, and get the machine calibrated to my particular situation. I'm not excited about the tattoos, but think they might be an excuse to get a real tattoo that I've always been too chicken to do. What better excuse than to cover up radiation tattoos!? Its my understanding that the radiation will start Monday, January 31st. I'm hoping to get an appointment super early in the morning so that I can avoid interfering with work as much as possible.

Thursday I have Herceptin at OHSU. This will be my first trip to the infusion room without getting the full chemo! I currently have eleven Herceptin treatments left, then hopefully I'll move right into the Neratanib trial. Please keep your fingers crossed that it's still open when I finish!

Hope everyone is enjoying the first month of the New Year! We will keep you updated when radiation begins!

Heather & Shane

Thursday, January 6, 2011

From the Chemo Chair 01/06/2011- GOODBYE CHEMO!!

This is probably going to be an information-dense post... so I apologize to anyone reading that doesn't really want to sift through the jargon to get the point. For those of you who would rather just get to the meat of the blog, here it is: THIS IS MY LAST CHEMO!!!!

Anyway,
I am about to finish my first bag of chemo - only two more bags to go. Period. No more chemo for me after today!!!! In all my excitement Dr. Luoh reminded me that this treatment isn't over yet and I would need to be particularly careful about sickness and fatigue after this treatment. He said that even though I'm 90% done with chemo today - this last 10% (the last chemo) could technically feel as bad as 50%. In other words, this chemo is going to be the worst yet. Dr. Luoh also reminded me that I will still have 11 treatments of Herception - luckily the Herceptin doesn't cause any side effects so it will be a quick 1/2 an hour infusion and then back to life! After the Herceptin is done I'll be able to have my port removed!!!

Shane and I had a number of discussion items on our agenda for Dr. Luoh this morning as we have both been doing our research surrounding the 2011 San Antonio Breast Cancer symposium, some up coming cancer trials, and the possibility of having my ovaries removed. Dr. Luoh indicated to us that some retrospective research coming out had indicated that the survival rates of women who are post menopausal are higher than those who are not and therefore the medical suppression of my ovaries or removal completely may be a good option to decrease my chances of the cancer returning which explains why he brought this up for the first time during the last chemo. He indicated that we could have this discussion once I was finished with radiation and that radiation would need to be our focus for the time being.
We also talked to Dr. Luoh about my current chances of reoccurance. According the BCIRG006 report with all of my treatments I have a 20% chance of reoccurance over the next 5 years. Shane feels like 80% chance that the cancer won't reoccur is great odds. Personally, I'm dwelling on the 20%, but trying to keep my chin up. In order to reduce these odds further Shane and I talked to Dr. Luoh about possible clinical trials available for me. Apparently there is a clinical trial that I could start after radiation that would have me taking the diabetes drug Metformin that possibly reduces the chances of reoccurance in the future. The other trial I would start after Herceptin utilizes an oral drug called Neratanib to target HER2 cancer specifically. Of course, Dr. Luoh suggested that I focus on the treatment at hand and plan for the best rather than getting too worked up about applying for clinical trials. Since he is the administrator for both of these trials, he assured me that we would talk about them when I was eligible and he would definitely keep me in the loop about any upcoming opportunities that I can take part in. I'm really in hopes that I'll be able to take part in both trials, if not, I think we are all leaning toward the Neratinib trial.

Next week I will be setting up an appointment with the radiologist to get started on my "calibration" for radiation and my tattoos to line up the machine. We are also planning on meeting with our Naturopath face to face for the first time (our appointments have all been over the phone) to talk about how to minimize the risks of radiation and some supplements I can take to make sure that my body is effected as little as possible - other than killing cancer cells. Just as a side note, Dr. Kaszor, our naturopath will be featured at the Komen Portland Breast Cancer Symposium in March! Shane and I are planning on attending and soaking up as much additional knowledge as possible. If only knowledge killed cancer cells!

Despite the linger fears of finishing chemo today and losing my poison-laden security blanket, I'm really excited and optimistic that I will not be spending 5 days every 3 weeks laid out on the couch! I'm excited to get my hair back - which has already started growing at a snail's pace. I'm excited to be able to walk up the stairs without losing my breath, drink a cup of coffee without getting sick, taste food, lose all of this weight caused by the steroids, finish the entire two mile walk at the dog park without gasping for breath, not have a consistently dripping nose from my lack of nose hair, stay up past 7:30p.m., and most of all enjoy life as its meant to be enjoyed! Hopefully in 5, 10, and 20 years I'll be able to look back and say that I'm SOOO glad that I finished this chemotherapy and even more glad that I didn't have to do it again! So here's cheers to everyone who has been so amazing to help us out and show support since starting this craziness in September and here's to closing this chapter of the cancer journey and continuing on to the next chapter: radiation.