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