Happy New Year!
Saturday, December 31, 2011
Happy New Year!
Wednesday, December 14, 2011
Wednesday, October 26, 2011
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
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.
Thursday, October 6, 2011
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
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
Thursday, September 22, 2011
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
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.
Thursday, July 21, 2011
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
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!
Thursday, June 2, 2011
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!
Thursday, May 26, 2011
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
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
Thursday, March 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.
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,
Thursday, March 24, 2011
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
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
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.
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.
Friday, March 4, 2011
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.
Heather & Shane
Friday, February 25, 2011
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!
Monday, February 14, 2011
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
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
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
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
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.