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”!! ☺