Sunday, October 31, 2010

Wrapping up Pinkapalooza (I mean, Breast Cancer Awareness Month)


Between being back at work full time, amping up my work outs in preparation for the Seattle Half Marathon that I may or may not run (do you have any idea how uncomfortable running with tissue expanders is? Probably not, but let me tell you...it's somewhat comparable to having an elephant sitting on your chest. Not that I've ever actually had an elephant on my chest, but this is how I imagine it would feel. Ah, I digress...) and taking care of this huge house that my husband insisted we'd grow into, I haven't had much spare time at all to tend to my very neglected blog.

I also haven't much to say about breast cancer, which is a really good thing, right?

I was honestly kind of dreading the arrival of October. As a new breast cancer survivor, the pinkfest of Breast Cancer Awareness Month can be kind of overwhelming...the proverbial salt in a very fresh wound. However, October has been a pretty great month for me. My energy level continues to increase. I stayed really busy, which helps this time away from Brian go by quickly. My amazing support group, the Seattle Young Survival Coalition, hosted our second annual Drink Beyond the Pink cocktail party/silent auction, and we raised over $26,000 to support young women with breast cancer!!! It was a great party for an amazing cause. Brian and I also signed up to do the Komen 3 Day for the Cure walk next year.

Our team, the Valley Girls & Guys, from my hometown, was the number one fundraising team in the NATION last year!!! Because of this amazing achievement, they (we) were invited to be part of the Seahawks opening ceremony for their Breast Cancer Awareness day on October 24th. We got to be on the field for the pregame festivities, and it was so.much.FUN!!! It's an amazing team, and feel so honored to be a part of it. As I've met my teammates, a lot of them ask if I know a survivor. When I tell them it's me, they're surprised/saddened/impressed. I definitely don't fit the typical breast cancer survivor profile (I'm short by about 20-30 years!) but I think it's really good for them to see that breast cancer DOES happen to young, healthy women. I usually get lots of questions, and I'm happy to answer them. I tell my story because I'm living proof that the money they work so hard to raise (most of my teammates are repeat walkers) goes to important research. I tell my story because awareness is great, and necessary, but what we really need is a cure.

To close with some good news, I had my first post-treatment check-up this week. I was pretty nervous going into it, but everything looks great, and I am marching forward disease-free! I can still use your prayers and good thoughts...getting through the next two years (my highest window for recurrence) is going to be a HUGE milestone for me, and I'll take all the support I can get to help me get there.

Did you feel your (or your wife/girlfriend/partner's) boobies this month???

My YSC Sisters at the Seahawks practice facility



Friday, October 1, 2010

Yay for positive BRCA news!

Patricia Prijatel, medical journalist and author of the fantastic blog called "Positives About Negative" (great title, right?!) has just posted some positive news related to Triple Negative, BRCA-1 positive breast cancer. As Patricia points out in her post, there have been a lot of funds and research effort dedicated to triple negative cancer because its lack of receptors has made it a difficult cancer for which to target treatment.

I've posted before that triple negative cancer used to be known as "the really bad stuff." Higher rate of metastasizing, no targeted post-treatment therapies like Herceptin and Tamoxifen to reduce recurrence risk, etc. I've also posted about how the BRCA-1 mutation predisposes carriers (like me) to an upwards of 80% lifetime risk of breast cancer. One would assume that a combination of the two of these would be pretty bad news (lucky me!)

However, this study from MD Anderson concludes that those with triple negative breast cancer and a BRCA mutation have lower recurrence risk and better survival rate than women who are triple negative without the mutation! All but one of the 77 triple negative cases had the same adjuvant chemo treatment, but the 15 women who had the BRCA mutation actually fared better than those without.

Unfortunately, the study did not state what kind of surgery the women had. My guess would be that those who knew of their genetic mutation had more aggressive surgeries (bi-lateral mastectomy vs. lumpectomy) and that might account for the higher survival rate. At any rate, it's great news for a triple negative, BRCA positive gal like me! This diagnosis hasn't been filled with many statistics in my favor, so I'll take this one!

Saturday, September 25, 2010

To My Baby Sister

Studies have shown that a cancer diagnosis can be harder emotionally on family members and loved ones than on the diagnosee. They watch from the sideline, feeling pretty helpless as the one they love goes through physical pain and suffering with little relief. They can't prevent the hair loss, the nausea, the surgery pain and scars, and radiation burns. Some family members distance themselves, feeling useless or unneeded. I'm so glad you weren't one of those.

I know it had to have been hard for you to watch me go through what I did. I know it had to have been hard to deal with my mood swings, lethargy and emotion. But you did so with a smile on your face, a great listening ear, and all the hugs I needed. You stepped up and brought me to medical appointments because you wanted to be there...to be part of it (and because I needed both the support and a driver!) You worked your butt off to raise funds and train for these three days and 60 miles of walking because you felt the need to do more.

It wasn't necessary. Walking 60 miles three months after having a baby is a very impressive feat, and definitely something I didn't expect you to do. But you were determined, a quality that I've always admired in you. You wanted to make a difference...and believe me, you have.

It's been a tough year, for myself and our entire family. It's been filled with illness, uncertainty, and lots of emotion. But it's also been filled with love. I simply cannot imagine going through this journey without the support of my family. In my weakest moments, it was so comforting to know that I could rely on your strength.

When I received my diagnosis, my first thought was "how could this happen?" My second thought was "I'm glad it was me and not my baby sister." Not because I didn't think you could make it through all of this, but because I never want you to have to.

I am grateful for every step you take, and every penny you've raised. I am forever grateful for our relationship. So honored to call you my sister...my friend.

Lovelovelovelove,
E



Wednesday, September 22, 2010

I've been in hiding

Well, not really. But I've definitely taken a HUGE step back from anything and everything breast-cancer related for the past month or so. Brian was able to come home for a few weeks, and it was absolutely AMAZING to spend time with him and not have to worry about a single medical appointment. We took a trip to the East Coast and really enjoyed ourselves. I hadn't been there in a few years, so it was really nice to see his side of the family; and to walk around the Naval Academy yard and reminisce about our wedding there.

Besides that, I just needed a break. I've pretty much completely immersed myself over the past year in all things breast cancer...research, information, medical trials, support groups...not to mention 49 weeks of active treatment. After I finished treatment, I really just needed to try to regain some semblance of normalcy in my life. I'm pretty sure reality laughed in my face at my assumption that I could return to status quo.

Everything is different. Yes, I live my life and try not to dwell on the fact that I just spent over 11 months actively fighting a potentially deadly disease. I try not to be frustrated that, when last year I could easily knock out 55 pushups, right now I am up to 2.5 pounds in my resistance training; or that I used to wake up at 4:30 every morning to work out, and right now waking up at 5:30 (sometimes 6) is filled with dread and mid-day exhaustion. Now, when I feel pain, like I did last week at the base of my neck, I instantly fear the worst, then have to talk myself back to a somewhat rational state. I wonder if the slice of wedding cake I had last weekend is going to regrow a tumor. I wonder frequently if I'll have to call (or worse, email) my husband while he is deployed and tell him news that would terrify him.

I went to my first support group meeting after finishing treatment, and was pretty amazed at how quickly I had switched roles from a supportee to a supporter. There were several women there just starting their course of treatment, and I was the one with experience and tips to offer them. It seems like just a short time ago, I was crying trying to figure out how to deal with losing my eyelashes or possible infertility. I'm not sure I was really ready for that transition.

I realized on the way home from the meeting that I'm living a completely new normal. I'm no longer a breast cancer patient; I'm a breast cancer survivor. I'm still trying to come to terms with that, and what it exactly means. That some days I will be fine and other days I'll be emotional and tired and cranky and fearful. Hopefully, as both my body and mind heal from the trauma of the past year, my fine days will start outweighing the not so fine ones.

Thanks for sticking with me through this journey. I am incredibly grateful for your support and encouragement...


Friday, August 13, 2010

Remission

After 11 months and 11 days, two biopsies, 2 mammograms, 2 PET scans, 3 MRIs, 18 rounds of chemo, a major surgery, and 28 radiation fractions, I am officially DONE with active treatment.

Obviously, the reward is sweet: remission. It means no daily trips to Seattle, no weekly visits with the doctor or weekly pokes for blood draws and port accesses, no more medicine cabinet full of antiemetics, pain meds, acid reducers, and muscle relaxers. However, it also means that for the first time in 49 weeks, I am doing absolutely nothing in terms of killing cancer cells or preventing their return.

For as happy as I am to be done with treatment, I am nearly equally as scared. A lot of cancer survivors really don't like being referred to as a fighter; that cancer is some kind of battle to conquer and beat. It implies two things: that we, as sufferers of this disease, had some sort of choice in the matter; and that those who succumb to cancer didn't fight the battle hard enough. Obviously, neither of those is true. However, I kind of feel like the allegory fits me and my military background better than most. I was at war with a disease. I fought it with the support of my medical cadre and the love of my family and friends.

The battle is over; the enemy is gone. But the carnage remains. I come off of the front line with my head held high, exhausted from the fight but still proud. I have suffered wounds...some are visible, some not so much. I know that time will heal both, but I will forever, both physically and emotionally, wear the scars of a breast cancer survivor.

Remission is a sweet, sweet word, but I'm not sure I'll ever be cured.

Monday, August 9, 2010

Thank you, Christopher Hitchens

I stumbled across this fantastic piece by Christopher Hitchens, "Topic of Cancer" in the September issue of Vanity Fair . His eloquent description of the emotions associated with diagnosis of cancer and physical symptoms of the first couple of rounds of chemo is spot on.

In other news, only FOUR radiation fractions left until my treatment is officially o.v.e.r!!!!!



Monday, August 2, 2010

Not for the faint-hearted

I just started my fourth week of radiation today...I have eight fractions left, and then I will officially be DONE with active treatment and in remission!

I met with my radiation oncologist at my weekly appointment on Thursday. At that time, my underarm was an interesting shade of blackened red, but the skin was still intact. She actually said she was impressed that my skin has held up so well through all she's put me through (I guess that was a compliment?!) She told me she'd stop the bolus (YAY!) and also gave me silver cream (and described it as Neosporin on steroids!) to use if my skin breaks open. Sure enough, by Saturday, it did. There's some lovely fresh pink skin poking out under the charred mess over it.

I took a picture just to have it, and figured I'd post it here in case you're curious about what a radiation burn looks like. It's not terribly pretty, so if you're squeamish or faint-hearted, do not scroll down. I guess the good news is that since I don't have much feeling under my arm from my surgery, it actually hurts a lot less than it looks like it would!










My underarm after 20 radiation fractions:

Monday, July 26, 2010

It's amazing the difference three months makes

Last Friday, I had my first infusion since my last round of chemo in April. I was given Zometa, which has been shown to reduce risk of recurrence, specifically in bone metastases, for pre-menopausal women. I was absolutely dreading it. After all of my trips to chemo, all of the pokes to get blood and start IVs, and the general feeling of absolute crap that followed, that's probably understandable. However, I was assured that if I drank lots of water, and got the infusion over 30 minutes instead of 15, those infamous flu-like symptoms that are a commonly reported side effect would be a non-issue.

Friday was a long day at SCCA. I had a blood draw...one stick, but a good minute fishing around my innards trying to find some blood in there. Everything looked good in that department...my cholesterol is perfect (a concern as some chemo drugs can elevate it); my white blood cell count is still a little low, which my oncologist assured me is normal as it's still in recovery mode.

I met with my oncologist and one of her residents. Her resident is very interested in me, since she is currently studying a vaccine for triple negative breast cancers. She asked if I'd be willing to donate some of my blood for her research. Heck yeah, I'm willing. I'll likely never benefit from this vaccine, but if my blood can help prevent other women from going through this hell, then I'm all for it!

My oncologist said that I looked great and was pleased with my radiation progress. We, again, (I claim chemo brain here...we'd discussed it before, but I needed to hear it again!) went over my care plan, which looks like this:
-Clinic visits every three months for two years, to include lab work and tumor markers
-Chest X-ray and CT annually for two years
-Pelvic Ultrasound (for my ovarian cancer risk) every six months until I have my ovaries out
-Zometa every six months for three years

I was surprised that this plan didn't include any PET/MRI scans. My oncologist feels like there's no need to expose my body to further radiation (thank you very much!) unless I'm symptomatic or my tumor markers are elevated. Studies have shown that the scans do not increase survival rates and just add to anxiety, which is definitely something I don't need.

I had my daily dose of radiation. I brought in a homemade, Tom Douglas-style Triple Coconut Cream Pie for my awesome radiation team. Needless to say, I won big points with that!

I finished the day up with Zometa (because nothing says Happy Friday like a good infusion, right?!) First things first: the infusion suites are FAR nicer than the infusion bay at Madigan where I did all my chemo. I had my own room, a bed, a nice recliner chair (that I'm sure Brian really would have appreciated!) and free access to all kinds of goodies. The infusion nurse was great, especially since she got my IV in on the very first try...HUGE bonus for her! The infusion itself was perfectly uneventful. Leah rested in the chair, Izzy slept, and we watched Ellen. We left, I felt fine, and had a great evening with my family.

Then came Saturday. I did not feel fine. I did not feel anywhere near fine. I felt worse than I did with any of my 18 rounds of chemo. I hurt from head to toe. I had a fever. I had chills. Apparently, I had significant weakness, since I passed out in my parents' hallway (glad I opted to stay with them over the weekend instead of by myself at home!) I honestly don't remember feeling so bad in my life. Sunday was a little better...still achy, but not so weak and feverish. Today is an improvement still. Leave it to me to experience the side effects that are "rarely reported"! Good thing I don't have to go back for six months, although I heard that each dose gets easier. We'll see.

When I downloaded the photo my sister took of me getting Zometa, I went back and looked at the photo of me getting my last round of chemo, and was absolutely amazed at the difference in my appearance. My hair is longer, my skin has color, and I actually have eyelashes!

April 2010

July 2010

Wednesday, July 14, 2010

Brass bolus, the funky bolus

Most people from my generation reading that title instantly got a fantastic little jingle by the Beastie Boys in their head. If you're not from my generation, you probably don't get it. Sorry. But I think of that silly tune every day when I go for my radiation and they put that awesome disco-tech looking brass bolus on my chest.

My radiation has begun in earnest. I started Tuesday of last week, and have 6 treatments down already. Only twenty two more to go!!!

I must admit that when I had my last scans two weeks ago to ensure that my simulation and treatment plan were accurate, and they brought that crazy brass bolus out, I panicked. You see, I'm a researcher. When I first met with my radiation oncologist several months ago, I spent days researching radiation treatments, the types of radiation most commonly used, etc. So I knew to ask my doc about the bolus (I don't usually like using Wikipedia, but it's the most concise definition I could find.) I am almost positive that she said I wouldn't need it. Imagine my surprise when the techs (who really couldn't have been nicer) draped this brass mesh fabric over my chest and told me that it was brass bolus. Everything else looked good, and I was ready to start after the holiday weekend.

As soon as I got home, I researched the heck out of brass bolus, and came up virtually empty. I posted a message on my breast cancer board, and while many women replied saying that they had the rubberized bolus, not one said they had brass. I was convinced that this crazy brass stuff was the archaic version of the rubberized bolus and I was getting subpar treatment. I emailed a friend from Seattle Young Survival Coalition who works in the radiation field about it, and even she didn't know. She did, however, convince me that the techs and docs at Seattle Cancer Care are some of the best in the business, and she was confident that I was getting the very best care. That made me feel a little bit better.

I really wanted Brian to come with me to my first appointment so that he could see what it was like and offer me some emotional support. He was able to get the afternoon off in the midst of a very busy work week. As soon as I got on that table, I asked them to tell me exactly what the brass bolus was and why I needed it. Since I have tissue expanders in, they want to avoid radiating the expanders and concentrate the beam over the majority of my expanded breast skin. The brass mesh bolus contours much better to the expanded tissue, eliminating hot spots from the beam and working to distribute it more evenly across the entire breast. In a nutshell, it's absolutely the very best thing to use for my situation. And here I was stressing out about it...HA!

Even though driving down to Seattle every day isn't very fun, I love my radiation team and the treatment is going really well so far. I haven't had any skin reaction yet, and haven't noticed any fatigue. Of course, it's cumulative, so that could (and probably will) change in a week or two. The treatment itself doesn't hurt at all. I can't see anything happening, only hear the soft sound of the machine beaming its cancer-killing rays into me. The whole time, I think to myself...this is my ticket to cure, this is my ticket to cure.

Some of you may wonder why I need radiation if chemo and surgery were so successful at removing all of that nasty cancer from me. As a triple negative survivor, radiation is my insurance policy to make sure that every last cancer cell is killed. My mom found a great article about its effectiveness in recurrence prevention and long-term survival. You can read it here.

Finally, a couple of photos of me on the table, brass bolus and all. The blue cradle I'm laying in is an imprint of my upper body to make sure that I am in the exact same position every time. You can barely see it, but the compression sleeve I'm wearing is to prevent lymphedema, since radiation can exacerbate the symptoms. I'm fine so far...no swelling at all. These were taken by a radiation tech who also happens to be a fantastic photographer...





Monday, July 5, 2010

Cleavage Creek

Brian and I love wine. He's a huge fan of a wine podcaster/guru/extraordinaire Gary Vaynerchuk, and watches his podcast, Wine Library TV, religiously. One day, Gary was interviewing a man named Budge Brown, the owner of Cleavage Creek Cellars. He started the winery in honor of his wife, who lost a long battle to breast cancer.

The winery donates 10% of gross sales to breast cancer causes, and features survivors on their labels. Even though I'd never considered doing anything of the sort before, I decided to apply to be one of their label models. Haven't heard back yet if I'm a finalist, but the questions asked in the application were very thought-provoking, so I thought I'd share my answers with you. I realize this makes for a very long blog post, but I think it's worth the read.

Describe your feelings when you received your initial diagnosis:

Due to a rookie resident goof-up, I basically had to ask him myself if I had cancer, even though I knew by his unprofessional previous statement how he would answer. I immediately went into my typical crisis response mode: as a military officer, I’m trained to absorb and resolve crises. I started asking questions right away about my prognosis and treatment plans. Unfortunately, since my biopsy was inconclusive in many aspects, I got a lot of “we don’t know yet” and “you need further tests” as responses. Looking back, I realize now that I was in a state of “I’ll just fix this and move on with my life” denial. As a 29 year old in perfect health with no family history of breast cancer, to say the news came as a shock is a huge understatement.

What are your feelings about how you were treated, both physically and emotionally, by your doctor(s), staff, hospital, etc.?

Besides that first resident’s mistake, I’ve received nothing but professional, compassionate care. Everyone has heard the horror stories of military medicine; I couldn’t have had a more different experience. I went through 18 rounds of chemo at a military hospital. My oncologist treated me with the utmost respect, both emotionally and physically. I had several appointments with him lasting well over an hour, mostly just discussing how my illness would (or would not) impact my life and my career. He listened to me and thoughtfully answered my multitude of questions. I never once felt like I wasn’t being heard. His nurses lovingly administered my chemo and addressed every concern I had promptly.

I have had the fortune to transfer my care to a very highly nationally rated cancer treatment facility in my area. My new oncologist there is just as good. While she doesn’t have the time or military experience to discuss my career with me at length, she’s brilliant in her field, and has been extremely reasonable going forward with my future treatment while being mindful of my priority to someday have a family.

My surgeon and plastic surgeon both did a fantastic job. Unfortunately for me, a bilateral mastectomy was my best option. Fortunately for me, I was a candidate for almost immediate reconstruction with temporary implants during the radiation process. I’m also fortunate that my radiation oncologist and medical oncologist were willing to bend the timeline a little bit so that I could get my reconstruction started before beginning radiation. Seven weeks following my surgery, I now have filled implants (albeit temporary) and look like I have breasts; this is really important for my psyche. I really liked my breasts, and was devastated at the thought of having to lose them. I really feel like everyone involved understood that and worked to get me to a stage resembling normal as soon as possible; for that I am forever grateful.

Where did you turn for support and information?

At my diagnosis, a nurse gave a book called Your Breast Cancer Handbook, by Judy Kneece, to read over at my leisure. I read it that night from cover to cover, absorbing all of the information and formulating a very long list of questions. I was warned to stay away from the Internet, and heeded that advice for quite awhile. Once I learned my treatment plan, I researched the chemotherapy drugs I would receive and all of their side effects to prepare myself. A friend of the family had breast cancer while she was young, and reached out to me; it was very important for me to talk to someone who had actually been through the experience instead of doctors and nurses telling me what it would probably feel like.

It took me a little while, but I finally was connected with the local chapter of Young Survival Coalition. This group has been vital to my mental and emotional heath through my treatment process; these women are my age with my same concerns. It is amazing to be part of such a wonderful group.

What was the turning point that made you decide that you had to fight your battle and win?

It was honestly never an option for me not to fight for my life. I am young and have a lot of years ahead of me. I have barely scratched the surface of a life together with my husband. I want to travel; I have dreams to see the pyramids of Egypt and the Great Wall of China. I long to be a mother. I have a lot of living to do. There was never once another option for me but to fight this with everything I had.

What was the turning point when you knew you were going to win?

I knew this was a winnable war when my initial PET scan came back free of any metastases. Stage III cancer was something I could handle; Stage IV cancer was a whole other world that I didn’t want to be part of.

What are you currently doing proactively to assure yourself that the cancer won't return?

I have been blessed by a fantastically supportive employer who has offered me medical leave throughout my treatment process. Since I have had time off of work to heal, I made it a priority to continue with physical activity throughout chemotherapy. I was very healthy and fit before diagnosis; I continued to work out and eat well through my treatment. I was very cognizant to get daily exercise and not to gain weight while on steroids. I am also under advisement of an oncology dietician who has me following a low-fat, high fiber diet. Since I have hormone-negative breast cancer and would not benefit from any post-treatment hormone regimen, diet and exercise are my only weapons against preventing recurrence, and I take that very seriously.

Include any areas of involvement where you currently volunteer or lend support to other women diagnosed with breast cancer.

Because I am still in active treatment, it has been difficult to find the time and energy to volunteer/advocate. I do plan on attending a National Breast Cancer Coalition LEAD course very soon to increase my knowledge and experience in breast cancer advocacy. My goal is to advocate for breast cancer research and treatment within the Department of Defense, since I am a Naval Officer. I feel like the military is woefully lacking in guidance to help its members deal with situations such as mine.

Currently, I am an active member of the Seattle chapter of Young Survival Coalition. I’m at the point right now where I feel like I’m mostly getting supported by other members, but hope that as I move past my treatment, the tables will turn and I can provide support and insight to others.

Background info you might want to share: where you were born, where you live, school, career, family, hobbies.

I was born in Tacoma, Washington, to amazingly supportive parents. I was fortunate enough to grow up in the shadow of my entire extended family, and we’re all very close. I graduated in 2002 from University of San Diego with a BA in International Relations, and was commissioned two days later as an Ensign in the United States Navy. I completed my first tour on a guided missile cruiser, the USS SAN JACINTO (CG-56) out of Norfolk, VA, where I met my husband. We were married in 2005 at the United States Naval Academy (he was an alumnus) and moved three months later to Pearl Harbor, HI. We spent the first four years of our marriage together on Oahu and enjoyed every minute of it.

We moved back to the Seattle area shortly after my diagnosis. It has been wonderful to be surrounded by my supportive family during this time. I’m also really grateful to live in a region that leads the nation in both cancer research and holistic/naturopathic treatment.

I grew up with a father who was passionate about wine. My husband did not know much about it before we married, but started taking an interest shortly after our wedding. In 2007, after he returned from a deployment, we took a two-week vacation to the north island of New Zealand and Australia. We planned the trip around wine, taking a wine tour surrounding Auckland, and staying several days in Hunter Valley, Australia. We both enjoy wine so much that we took a post-chemotherapy, pre-surgery vacation to Napa, CA. We stayed for five days, tasted some amazing wine, and ate delicious food. We both cannot wait to return. Along with travel and good wine, I really enjoy cooking, gardening, and taking long walks.

Include a short biography of your cancer experience and explanation of how it made a positive difference in your life: date of diagnosis, treatments & procedures, thoughts and emotions you experienced, anything you want to share with others diagnosed with breast cancer (if only someone had told me __________), anything you might be doing now that impacts your life as a breast cancer survivor (diet, medications, support group, lifestyle changes, meditation, herbs, etc.)

It said that people never forget the details that surround the receiving of traumatic news. My grandparents remember exactly where they were and what they were doing when they heard of the attack at Pearl Harbor; for my parents, it was President Kennedy’s assassination. My “Pearl Harbor” happened on September 1, 2009. I was in a small room, sitting on the exam table at Tripler Army Medical Center. My husband was a few feet away in a chair—home on emergency leave from the Middle East-- and a breast health liaison from my medical center was standing next to me. I wasn’t told those three dreaded words. No one said “you have cancer.”

I knew it was bad when three doctors walked in; who has three doctors tell them everything is fine? The surgeon who did my biopsy told me that my results were “unfavorable.” The trouble was that because they rushed my biopsy (to get the results faster), it wasn’t definitive for a diagnosis. All that my medical team knew at that point was that the lump in my right breast was cancerous; they could not rule out Ductal Carcinoma In Situ (DCIS—Stage 0 Cancer). DCIS is a best case scenario in the breast cancer world: easily treatable and incredibly good prognosis, so I right away I was very hopeful that this would be just a short bump in my otherwise very healthy, active life. I scheduled a lumpectomy for the following week, and meanwhile underwent genetic testing and had a full chest MRI. This is when everything went downhill.

Even with absolutely no family history of breast cancer, I tested positive for the BRCA-1 genetic mutation, a breast cancer mutation that carries upward of an 80% lifetime risk of developing breast cancer, and about 60% risk for ovarian cancer. This mutation also increases the risk of recurrence and secondary breast cancers. I was probably more surprised to hear about my BRCA-1 status than I was for my initial diagnosis. However, still assuming that I had very early-stage cancer, and that I had longed to breast feed my future babies, I still opted to go ahead with the lumpectomy.

I had my MRI two days before my scheduled surgery. The results came in late the night before I was to be at the hospital: the tumor appeared to be invading my chest wall. I also had significant lymph node involvement. Therefore, the surgeon did not think that it was possible to obtain clean margins via a lumpectomy. He went further to say that clean margins would be impossible even with a mastectomy. My surgery was cancelled. I was devastated. At 29 years old, I loved my breasts. My breasts made me feel beautiful and sexy. The thought of losing them was almost beyond comprehension.

The new plan was to go ahead with chemotherapy before surgery with the hope that it would shrink the tumor away from the chest wall for a more successful surgical outcome. I had another biopsy to test for hormone and HER/2 status so that my cancer could be staged. The results came back as unfavorable on all counts: I had a triple negative tumor. Triple negative cancers do not benefit from any treatment other than surgery, chemotherapy and radiation. Doctors do not know what causes this type of tumor to grow, and unlike hormone-positive tumors treated with hormone suppression, they have no way to prevent this type of cancer from returning except to eradicate it the first time around. My final diagnosis was Stage IIIB Invasive Ductal Carcinoma—advanced stage breast cancer.

I underwent 18 rounds of chemotherapy spanning seven months. Even though it was not a fun experience, the chemo was very effective at killing the cancerous cells that threatened to kill me. I went into my bilateral mastectomy with a complete pathologic response; no cancer remained in any tissue the surgeon removed! This was my absolute best-case scenario and greatly increases my prognosis.

I am two months out from surgery and have done well with the recovery process. While I dreaded losing my breasts, it was nice to have seven months to contemplate and come to terms with it. After putting my body through all of the stress from so much chemo, I knew I had to do everything in my power to prevent the cancer from returning. I have already started my reconstruction, and am so grateful for some semblance of breasts so soon after my surgery. I will be starting radiation in the next week or so, and am so looking forward to the finish of this almost year-long journey and getting on with my life.

For as negative an experience as is cancer, I feel blessed in so many ways. The physical and emotional support I’ve received from my family and friends has been amazing. I have never felt so loved in my entire life. I also feel incredibly fortunate to have such fantastic medical support from my employer. Military medicine has an infamously bad reputation, but my experience has been nothing short of amazing. I have received the absolute best in medical care, both at the military medical center, and at the civilian cancer center where I was referred. The only out of pocket expense I’ve had after nine months of intense medical care is parking fees!

My diagnosis of BRCA-1 positive, hormone negative, advanced stage breast cancer has been filled with scary statistics. But I am not a statistic; I am a human being with a lively, fighting spirit, not just a number. Not many people my age have the opportunity to be confronted by a potentially life-threatening experience. This cancer has given me the chance to stare the ultimate challenge in the face, and make the decision to do whatever I can to conquer it. I fully understand that every breath I take is a gift, and tomorrow is never guaranteed.

To this end, I’ve met with a dietician specializing in oncology prevention. I’ve changed my already healthy diet to follow a low-fat, high fiber lifestyle and am now eating and exercising as though my life depends on it, because it really does. As soon as I’m cleared after radiation, I plan on making yoga an integral part of my post-cancer life, as it is great for both body and mind. I will continue with my support group, and am fully confident that soon I will transition from a member of the group who needs support to one providing it to another young woman facing a new cancer diagnosis and all of the confusion, frustration and heartache that comes with it.

I realize this was supposed to be a short biography, but nothing about this process has been short or simple. I could go on and on about how I dreaded going to each round of chemo, or about how badly I wanted to keep my breasts, or about how incredibly fortunate I have felt to be going through this experience surrounded by love and fantastic medical care. I could write for pages more about how one moment I can be sobbing on my bathroom floor about the unfairness and hideousness of this horrible disease, and the next moment happy and hopeful about my future as a breast cancer survivor and advocate. I know that as I move past my treatment into remission, that the tears will be less and the smiles will be more.

Monday, June 28, 2010

A letter to my ovaries

Dear Ovaries,

I endured seven very painful shots in my bum. I've been suffering through hot flash after hot flash, creaky bones and joints, and I won't even mention where else I had pain. All to protect you from the negative effects of chemo. You got to rest for a LONG while!

It's time to wake up now. I can tell that you're getting there because of all of the lovely pimples that dot my face. Not very nice of you to tease me with hormonal acne and still bring on the hot flashes...I can do one or the other, but NOT BOTH!!!!

I promise that I'll never complain about cramps or irritability again, but I need you to do your job now, mmmmkay?

Thanks,
Erin



Saturday, June 19, 2010

My Alexander Day

You remember Alexander, right? You know, as in "The Terrible, Horrible, No Good, Very Bad Day" Alexander? Well I sure had myself an Alexander day this week. It started out good, then went to crap in a hurry.

My first appointment was with my plastic surgeon's office for my last tissue expander fill. I was proud of myself for getting up and out of the house early enough to beat the traffic and make it with enough time to spare for a Starbucks stop. I'd been going on Tuesdays and Fridays for the past three weeks to get all filled up before starting radiation, and even with all that filling, have done amazingly well. My oncologist warned me that fills can be very uncomfortable, and except for my first one, I really haven't had much trouble with it at all. Until the last one. It hurt while the doc was filling it. It hurt afterward. I decided to live with it thinking that the pain and tightness would subside quickly like had been the case with all the other fills.

I had a couple of hours to pass until my next appointment, and decided to stop by a French bakery in Ballard for a croissant and to pick up some of their lavender macrons for my purple-loving friend. I drove 15 minutes out of my way only to find that the bakery was closed that day. Boo. Meanwhile, my chest was starting to hurt so badly that the pain was radiating down my arm.

Speaking of radiating...my next appointment that day was my radiation simulation. I had to lay on a CT scanner bed with my arms over my head with a very warm plastic-encased chemical mixture below me to make an imprint of my upper body in that position. I'm honestly not sure which was worse...the pain in my arms in that position or laying on that hot liquid while having a hot flash! The wonderful experience was topped off by me getting four pinprick tattoos on my chest for the radiation techs to use as reference points, like my scarred chest is some kind of map.

Finally I was done. I was shaking afterward because my chest and right arm hurt so badly. In fact, I could only use my left hand to back the car out of the tight spot in the parking garage. I was so busy paying attention to not hitting the car illegally parked behind me that I ran right into a concrete post with our 6-month new car! At this point, I was beyond frustrated. I even had to call the security guard to come help me get the car away from the post. It was all I could do, emotionally and physically, to drive myself home. I felt so horrible for dinging up our brand-new car. Of course, Brian handled it really well, which made me feel slightly better.

After my rough day, I really needed a good night of sleep, especially since I had an important conference at work the next day. Didn't happen. I tossed and turned with pain until Brian's alarm went off. When I realized that I'd never make it through the conference, I took some serious pain meds, emailed my boss, and crashed.

I toughed through the pain, and it finally subsided. We got the estimate for the car, and will pay our deductible to have it fixed. I can think of a lot of other things I would have rather spent that money on, but it's important to me to do the repairs, especially since it still has that new car smell.

That is the great thing about bad days...they always end, and rarely ever is the damage permanent.


Tomorrow's looking up!

Saturday, June 12, 2010

310 cc's !!!!

I went in for another fill yesterday...I'm now up to 310 cc's of saline in each side. I have one more fill on Tuesday, which should bring me up to 370 cc's. At this point, I actually look like I have honest to goodness boobies...it's fantastic, and amazing to me that four weeks ago, my chest was as flat as a board! I'll probably end up being just a bit smaller than my natural size, but fuller and perkier. These are two wonderful qualities as I venture into my 30s, when gravity would normally start taking its toll (there's a silver lining to everything, right?!)

After my last fill on Tuesday, I'm going straight to SCCA for my radiation simulation. During this appointment, I'll have a chest CT, which will be sent to mathematicians and physicists to calculate the exact vectors needed to zap all of the right places. I'll have a mold made of my upper body and several pinpoint tattoos on my chest so that I can be lined up on the table exactly in the same position every day. I will probably start radiation a week following that appointment.

The other big news is that I'm finally heading back to work. I've been on medical leave since my diagnosis nine months ago. While it's been very nice to have been able to rest and recover from my chemo and surgery (and I'm incredibly grateful for that time off,) I'm ready to get back. I will be turning over with the training officer there and supervising the training cycles of three of the ships in Everett...essentially the same thing I was doing at my two jobs in Hawaii, so a perfect fit for me! The plan is to work mornings during radiation, and then go to full days once radiation is over. I was honestly worried that I would become a paper-pusher doing a lot of administrative tasking, so I'm actually really glad that I'm able to provide a badly-needed skill set in the office.

It's a beautiful day in the Pacific Northwest, so I'm off to enjoy it!

Hope you all have a fabulous weekend!

Monday, June 7, 2010

I've been a bad blogger

The combination of a really busy late May/early June and playing the waiting game for radiation has resulted in a very neglected blog!

My big accomplishment in the past week was achieving full range of motion on my right arm. My left side recovered quickly after surgery, but my right side (my affected side where I had my lymph nodes removed and I developed axillary web syndrome) was really tight. I've been going to physical therapy to increase my strength and range of motion, and during my third session I was able to get my right arm to 180 degrees!

I've also been visiting my plastic surgeon for saline fills of my tissue expanders (temporary implants.) So far I have 190 cc's in each implant. It's pretty cool to watch my chest expand before my eyes, and I now have noticeable bumps! Of course, I have a ways to go before I'm to where I'd like to be (probably around 350 cc's). The goal is to be completely filled before starting radiation, which is right around the corner. Because radiation is damaging to tissue, it's difficult to expand further following radiation as the skin loses its elasticity.

I'm 10 weeks past my last chemo treatment...my hair is growing back in full force (I actually get tons of compliments on it), and finally have some respectable eyebrows and eyelashes (thank you, Latisse!!!)

Hope you're all well--

Wednesday, May 19, 2010

NTR

That's Navy speak for "nothing to report." For me, that's kind of a good thing; for the blog, not so much!

I had my post-op check up with my surgeon last Friday, as well as an appointment with my oncologist. My oncologist was seriously overjoyed at my fantastic, complete response to chemo. Since the normal course of events after a cancer diagnosis is surgery-chemo-radiation, oncologists very rarely get to see chemo's full fighting power, as surgery removes most (hopefully all) of the cancer and chemo plays clean up. She described my complete response to chemo as a Grand Slam in the oncology world!

In a couple of days, I have my first physical therapy appointment. I'm really looking forward to improving my range of motion, particularly in my right arm. I have some signs of slight Axillary Web Syndrome under my right arm where I had my lymph node dissection. This condition is pretty common, and easily correctable through special massage and stretching.

I'm also having my first saline fill on Friday. I've heard it can get pretty uncomfortable, but is pretty cool to watch as my chest grows right before my very eyes! I'll be sure to report back.

Be Well,

Sunday, May 9, 2010

A collective thank you

It's been a little over eight months since my diagnosis. During that time, I have been treated, consoled, hugged, prayed for. I've been examined, imaged, poked and prodded and cut into (all with good intentions, of course!) I've been touched by so many people...this is definitely an inconclusive list.

First, I thank God; for this test that He just knew I, for some reason totally unbeknownst to me, had the strength to pass.

I thank my husband...really, that word seems so insignificant for all that he has done for me. For giving up an important job to drive me lots of miles so that I may be injected with toxic chemicals that left me sick and exhausted, and for picking up my slack around the house because of it. For making me laugh when I felt like crying, and for kissing my tears when I did cry. For so lovingly and tenderly emptying my surgical drains, changing my bandages, and rearranging my pillows. For loving me more now than ever before, and for the million times throughout this process you've told me that I'm beautiful. I can't imagine going through this journey with anyone else but you holding my hand.

For my parents: for stopping whatever it was that was going on in your life in September and flying Mom to Hawaii to help me pack up for my move when I was a mess. For opening your guest room for a month until our stuff arrived in Washington and we could move in to our own home (and helping us unpack.) For driving me to countless appointments, including my first round of chemo, and sitting by my side as we, together, waded through the complicated medical jargon that is included in a serious diagnosis such as cancer. For showering me with love, concern and affection...I'm a very lucky daughter.

For my sister and brother-in-law, who have taken on the challenge to walk 60 miles in my name, and have raised nearly $5000 for breast cancer. For being there at the hospital during my surgery, and the many visits they've paid and love that they've offered. I'm so blessed to have a close relationship with my sister, and am so grateful I have been able to go through this in the shadow of her love and support.

For my extended family and friends: you were there at the airport (at the gate, even!) to greet me at the start of what's been a long process. I can't think of a better way to feel more love and encouragement than that! For all of your Facebook messages, visits, and meals, and prayers...it all means more to me than you'll ever realize...everyone should be so lucky to have such an amazing family. For Kathy, my breast cancer guru, who called me because she knew I wouldn't call her...who reached out to me and told me what to expect because she'd been there before, for lovingly and compassionately shaving my head when my hair was falling out, for trimming my wig to be appropriate for my uniform, and giving me my first post chemo haircut.

For my medical team: the doctors who studied long and hard to be the experts in this horrible--and too common--disease; who carefully and knowledgeably devised the best treatment plan for my situation. For the surgeons who meticulously removed harmful tissue from my body and sewed me back together. For the chemists and pharmacists who invented the chemotherapy that destroyed the tumor that threatened my health, and developed medications so that I wouldn't feel quite so terrible from its toxic side affects. For the nurses at MAMC who so lovingly administered that chemo, who made sure I was comfortable and wrapped me up in blankets and cheered for me on my last day there.

For my employer and boss...the military isn't always the easiest life, but this is one situation where being a veteran has proved invaluable. I've had state of the art medical care and have not paid a single penny--other than Seattle parking fees--for it. That's something to be extremely grateful for! Thank you to my boss in Hawaii for seeing that moving me to Washington, while not the traditional way of dealing with a limited duty situation, was the best option for me. Thank you to my new boss for giving me all of the time off I needed to rest, recover and get healthy. Thank you for cutting Brian's tour in the Middle East short and moving him to Washington with me. For Brian's boss giving him time off to drive me to 18 rounds of chemo, tons of medical appointments, and three weeks at home to help me recover from surgery.

Thank you to everyone out there praying for me, encouraging me and supporting me. Thank you to all the women who have gone on this journey before me. Knowing that you have made it through all of these milestones has helped me feel not quite so lonely.

I wouldn't wish this on anyone, but am grateful beyond words that I had each and every one of you on my side...I am a stronger, better woman because of it.


With so much love and gratitude,

Wednesday, May 5, 2010

Put your party hats on!

My surgeon called me today to share my pathology report. The chemotherapy did its job and I had a pathologically complete response!!!

This means that no more disease was found in the breast tissue, nor in the 28 lymph nodes they removed! My surgeon said that there was evidence of prior disease in 4 lymph nodes and significant fibrosis (scar tissue) at, but not in, my chest wall.

These results are the absolute best case scenario for my situation and my best chance for cure.

I'm not drinking this Cinco de Mayo because of my pain meds, but if you are, tip one back and toast for me...this is definitely reason to celebrate!!!

Thank you all so very much for all of your support and prayers...they clearly worked!

Feeling SO blessed...

Monday, May 3, 2010

An uneventful trip to the doctor

I'm at exactly a week post-op today. The only two trips I've made out of the house have been to seek medical attention. Needless to say, it's been a pretty uneventful seven days!

My right surgical drain had reached its criteria for removal: less than 30 cc's of output over 24 hours for two consecutive days. However, I have been concerned with the swelling on that side, specifically because it's the side of my axillary node dissection and I worry about lymphedema. My doctor didn't seem too worried, and chalked up the swelling to surgery. It makes sense...my chest underwent a pretty significant remodel one short week ago. I suppose some swelling is both inevitable and understandable. So I will keep both of my drains in until at least my appointment on Friday.

Brian has been doing an absolutely amazing job taking care of my every need. He's lovingly and patiently washed, drained, and redressed my incisions several times a day. He's readjusted my pillows, given me my medicine, brought me my meals, washed my hair, filled my water bottle, dressed me, gone out of his way in the car to avoid the bumpy roads...I could go on and on. I'm so blessed to have him by my side through all of this.

Thank you for all of your love and support as I battle through this. Many of you have sent cards, brought meals or stopped by for a visit. Many others support me by praying or sending good thoughts my way. I appreciate it all.

Hugs,

Friday, April 30, 2010

I made it

After four hours of surgery, a hospital stay, an excruciatingly painful ride home from the hospital, and a revisit for fluids and IV meds/painkillers two days later, I am officially on the mend.

Brian has been nothing short of amazing tending to my every need. My family has really pulled through, bringing delicious food and gracing me with their smiles and hugs. As the days go by, I'm experiencing less pain and more rest, less stress and more peace. The tumor is gone...while we wait for the pathology report with the details, I can close my eyes with the comforting thought that it is no longer present in my body.

"So damned easy to say that life's so hard.
Everybody's got their share of battle scars.
As for me, I'd like to thank my lucky stars
that I'm alive, and well.

It'd be easy to add up all the pain
and all the dreams you've sat and watched go up in flames.
Dwell on the wreckage as it smolders in the rain,
but not me...I'm alive.

And today you know that's good enough for me.
Breathing in and out's a blessing, don't you see?
Today's the first day of the rest of my life.
And I'm alive, and well.
I'm alive, and well."

--Kenny Chesney/Dave Matthews



Here's to health and love, and LIVING!

Sunday, April 25, 2010

Finally

It's been almost 8 months since my diagnosis. The time between hearing the C-word and now has been both a blessing and a burden. I've definitely had a lot of time to come to terms with it; time to grieve my loss, time to be angry, time to question, time to reflect. But now, it's time to move on.

While I'm anxious for tomorrow, I'm also relieved. I'm ready for this next step in my treatment. I'm ready for all of the cancerous waste to be gone and to start fresh.

Please pray for me. Pray that the chemo worked its nasty magic and got every last cancer cell, for that is my best chance for cure. Pray that my heart will remain calm, and that I will wake up peacefully and recover fully. Pray for Brian...he is grieving, too. Pray for our strength, and for our healing.


Cheers,

Thursday, April 22, 2010

Back to reality

Just a quick post this time...I've got lots of laundry and house-cleaning to do before Monday!

Our trip was absolutely wonderful! We saw some beautiful scenery, drank lots of really yummy wine and ate delicious food (the scale reading this morning proved it!) I'll post some photos and highlights over the weekend...just wanted to let my faithful and supportive followers know that I so appreciate all of your kind words, thoughts and prayers.

More from me soon...

Tuesday, April 13, 2010

And just when I thought I was doing okay...

I must start out by saying that yesterday was the first Monday since January 4th that I did not get poked with a single needle, have blood drawn, or receive chemo (excluding the two national holidays, in which case all of that fun ensued on a Tuesday.) I got to celebrate by spending the day with a good friend from college and her absolutely adorable daughter, capped off with a delicious Mexican dinner to include homemade tortillas that I love so much. It was a great day.

This morning as I was preparing for my walk/run, it suddenly dawned on me: less than two weeks until my surgery. Being in San Diego and keeping busy has fairly successfully kept my mind off of the inevitable...haven't had too much time to dwell on it. I grabbed my iPod, and realized that I hadn't yet listened to the Health Journeys guided imagery meditation that Brian downloaded for me to help me prepare for successful surgery.

I finished up my exercise and headed out to the beach. Found a place away from others, and started the meditation. The guided imagery part is only about 20 minutes long, and apparently really good at uncovering buried emotions. I say this because it only took me about 2 minutes of listening before I started crying. This wasn't a full-on sob-fest (that happened later,) just tears down my face for the remainder of the track. I wasn't really sure where the tears were coming from; it's not as thought I haven't thought long and hard about this surgery (remember from a previous post...I think about it a lot.) Part of the guided imagery talked about letting go; about feeling connected to the bones and blood and muscle and tissue as my body works to heal; about appreciating my body for the steadfast companion it has been to me for as long as I've been alive.

And that's when it hit me. I've been angry at my body. I feel like it has failed me. I did all the right things. I exercised, maintained a healthy weight, ate tons of blueberries and other nutritious, organic food way before it was the popular thing to do. I'm 30 years old. My body is supposed to be gearing up for growing babies, not tumors.

After I had a good cry, I tried as hard as I could to think positively about this body toward which I'd (unknowingly) harbored so much resentment. I can still walk (running isn't pretty, but I'll get there!) I can see and hear and smell and taste and laugh. Besides losing my hair during chemo, my body did amazingly well with very few of the horrible side affects that afflict others.

Good thing I listened to that guided imagery when I did: I now have 13 days to think positively about my body and prepare, both physically and emotionally, for a marathon healing process.

Monday, April 5, 2010

I did it!!!

After 18 rounds spanning 7 months, I'm officially DONE with chemo! Yay, yay, YAY!!!!

Leaving the hospital was bittersweet. I'm so happy to be done with chemo, but will miss my great oncologist and the awesome nursing staff who took fantastic care of me while I've been going through the biggest challenge of my life.

They even gathered in the chemo room and presented me with a Way To Go certificate for finishing! Here are a couple of photos of the day...






That last photo was taken in the exact same spot at the hospital as a photo I took before my very first treatment on September 30th, 2009. At the time, the leaves on the trees were orange and I still had all of my hair. My chemo treatment shadowed the seasons perfectly. My hair fell out just as the trees lost their leaves. During the first few days of winter, I was at my worst...I had lost weight, and low red blood cells left me looking pale and weak. My hair started to grow back just as the flowers emerged from the ground. And now, as the trees sprout their new leaves, I am finishing chemo with a new lease on life.

I am looking forward to spending some time traveling with Brian before my surgery in three weeks. Stay tuned for the next phase in my recovery process...

Thanks so much for all of your prayers, support, and love.

Saturday, April 3, 2010

Game on!

After six hours and four doctors yesterday, plus tons of questions and lots of great answers, I now have an official plan for surgery.

(My description below might be too graphic for some. If you're one of those people, stop reading!)



I am lucky that the tumor had no skin involvement, so I am a candidate for a skin-sparing bilateral mastectomy. Since I had lymph node involvement, I will also be having a full axillary dissection on my right side. The surgeon will cut around my areola, remove it and remove my breast tissue through the incision, which will result in a smaller scar than is common in a traditional radical mastectomy. I will also have a small incision in my armpit to facilitate the lymph node removal.

The plastic surgeon will then place tissue expanders (temporary, fillable implants) underneath my pectoral muscle on each side, using an Alloderm (synthetic tissue) patch to insure that the implant is completely covered. He will fill the tissue expanders with saline to keep the preserved skin stretched. So I will wake up with two breast mounds, which I like much better than the idea of waking up completely flat chested. I will go to the plastic surgeon's office once or twice before starting radiation for a saline fill, and will then resume fills until I get to my desired size once my skin has healed from the radiation.

A lot of plastic surgeons do not recommend implants in patients who need radiation. The failure rate is higher (specifically in women who undergo full radical mastectomies) as radiated tissue does not have the ability to stretch like normal tissue. However, since I'm young and am having a skin-sparing, my plastic surgeon thinks I'll do fine.

This is a study I found from 2009 where the patients had immediate/delayed skin-sparing mastectomies with Alloderm followed by radiation. The results are very promising!

If I'm an exception (as I've proven to be throughout this process!) I'll move on to more invasive procedures like the IGAP or SGAP. But for now, I'm happy with my reconstruction decision.

Happy Easter to everyone. Count your blessings!

Monday, March 29, 2010

Perfect Timing!!!


At least, that's what research presented in a European breast cancer conference is saying. I linked the article, which is a quick read, and exactly what I wanted to hear as Brian and I continue to weigh our options.

Had a great chat with a gynecologic oncologist on Friday about ovarian cancer prevention and pregnancy questions. She's perfectly comfortable with me getting pregnant (YAY!), and delaying ovary removal until age 38 as long as I stay current with my twice a year screenings (YAY some more!!!) She assured me that by having the bi-lateral mastectomy, I really am mitigating my risk of breast cancer recurrence to the lowest denominator in my situation. Of course, that's no guarantee, but it's the best we can do.

It also doesn't help my fear of the cancer coming back, which is my biggest challenge to the idea of being pregnant. I told our counselor (and Brian, who was there with me) in one of our talks a couple of weeks ago that I'm not even done fighting the cancer I have now, and I'm already afraid of it coming back. People say this gets better with time.

I sure hope so...


P.S. A photo of me at Deception Pass recently to show off my new hair!

P.P.S. A HUGE thanks to Katy for my new blog banner!


Wednesday, March 17, 2010

Couldn't have (not) said it better

Here is a link to a fantastic article in the New York Times about living with cancer. I hope you'll read it.

Thanks so much for your support and encouragement regarding last Friday's post. Brian and I have done a lot of talking...no resolution yet, but I feel like we're doing a great job discussing our feelings and concerns openly and compassionately. Being the information guru that I am, I've spent the past couple of days doing lots of research on pregnancy after breast cancer. We have an appointment next week with a reproductive endocrinologist to discuss fertility options...all steps in the right direction to make the best, most informed decision we can.

Saturday, March 13, 2010

To Conceive or Not To Conceive?

That's the million dollar question.

I saw my new oncologist at Seattle Cancer Care Alliance yesterday. I am transferring my care there for several reasons, none of which is that I don't like my current oncologist at Madigan. I love him. I love the nursing team there. I'm sad to leave. However, 70 miles each way is just too far to drive for daily radiation and the follow on care that I'll need.

I was lucky enough to get referred to one of the best breast reconstruction surgeons in the nation, and he works out of UW, so it just makes sense to transfer all of my care to SCCA. It also doesn't hurt that US News ranked SCCA/UW as the sixth best cancer hospital in all of the US, and that my new oncologist specializes in breast cancer.

Since my surgery is rapidly approaching, I have started to feel anxious about what my follow-on care will consist of. Part of that concern is what our timeline looks like as far as starting a family.

Easy stuff first: because of my BRCA-1 and triple negative status, I will see my oncologist for a clinical exam and have my blood tested for tumor markers every three months for the next two years (and every six months for years 3-5). I will alternate breast MRIs and CT scans every six months for the first two years, and then annually after that. I will also have to be monitored carefully for ovarian cancer, to include blood tests and pelvic ultrasounds every six months until I have my ovaries removed. The two years post surgery are crucial, as it is my most vulnerable window for recurrence.

As far as starting a family, that's where things get complicated. Our safest option is to have my ovaries removed now (which reduces my risk of recurrence as well as eliminates my risk of ovarian cancer) and adopt. Another option is to wait two years (to get past the highest risk of recurrence) and hope that the Lupron I've been taking has done its job protecting my ovaries during chemo, and we can get pregnant. My doctor says that my chances of that happening is pretty high (somewhere in the 85-ish% range). She also included a huge caveat to this option: should my cancer recur during pregnancy, we have to be prepared to terminate the pregnancy to start immediate treatment to save my life. We asked about fertility treatments now to preserve embryos and look at a surrogate when we're ready to have children, but that option is off the table because egg retrieval is extremely hormone intensive.

So now we have to make a decision...reduce my risk to the lowest possible extent and never have a biological child, or try for a baby and pray that I make it through the pregnancy cancer free. As if it wouldn't be awful enough to receive a second cancer diagnosis, it would be absolutely devastating to be faced with having to terminate our pregnancy, especially getting pregnant knowing of that risk. I just don't know if I could do it...

Cancer blows.

If you're the praying kind, please pray for us. If you're not, we could use all of the good thoughts you can throw our way.



Friday, March 5, 2010

Gilda's Club

Last night, Brian and I attended our first event at Gilda's Club in Seattle. Most people have probably never heard of it...I added a link so that you could check it out for yourself. It's a wonderful organization that provides emotional support for anyone touched by cancer.

Last night's meeting topic was about preparing for and healing from surgery. Sure, I'll have a pre-op appointment with my two surgeons and the anesthesiologist where they will discuss exactly what the surgery entails. We'll get the run-down of how to take care of my incisions, change dressings, monitor fluids, etc. while I'm in the hospital, and I'll have several follow-up appointments to track my recovery.

But that's all physical stuff. This meeting--led by a psychotherapist, herself a breast cancer and double mastectomy survivor--was to discuss the emotions. By all accounts, any cancer diagnosis is a scary thing. In most cases, it's a very short time between diagnosis and life-changing surgery. I had eleven short days between hearing those words and my scheduled lumpectomy. As much as I was trying to calmly and responsibly make decisions with what little knowledge I had, I became absolutely completely unraveled when I realized that the surgical decision was completely out of my hands.

At the time, my cancelled surgery was devastating to me. I realize now that it's been a blessing. I've had since September 10th to internalize the fact that my best chance for cure is to lose my breasts. Initially, when I was faced with a mastectomy as an option, I didn't even want to consider it. I was 29. I liked my breasts (my husband really likes my breasts!) I haven't had children yet and needed those breasts to feed them. I couldn't really imagine a life without them. It took some serious soul searching to realize that it was either a life without my breasts or a good possibility of no life at all.

That's heavy stuff...and these are the decisions that millions of people like me have to make on short notice when receiving a diagnosis of cancer. Thank God for organizations like Gilda's Club that cater to the incredibly emotional journey that is cancer. I was so happy that Brian decided to go with me. I worry about him because people are always asking how I'm doing, but he's going through this, too. He asked great questions, and I think he came away with some helpful tools to help him through the surgery process. I feel so incredibly blessed to have him by my side through this.

One question Brian asked the speaker was if the trip we're planning shortly before my surgery was a bad idea, thinking that it might distract me too much from the emotional preparation that I needed before the big day...that we might be better spending that time thinking of what was to come. The speaker looked at me before she spoke, and I made a comment...

I've thought about this surgery every.single.day

She smiled at me and nodded, then proceeded to explain that our trip sounded like a perfect way to celebrate the end of a chapter in our lives and the beginning of a new one. It will be a new beginning. In many ways, I'm looking forward to having this behind me and getting on with my life, but there are days that I absolutely dread the idea of this surgery.

Fortunately, there are also lots of days where I can smile and proudly tell people that I'm having a double mastectomy...that I'm choosing to do everything in my power to end my disease and continue living.

Monday, March 1, 2010

Officially more than 2/3 done with my chemo!

After a two-week delay, I finally was able to get my chemo today! Following my denial again last week, I went back for another blood draw on Wednesday. My WBC count was still the same as Monday (800), so my doc opted to give me three shots of Neupogen to boost my WBC production. Even though the shots cause some serious bone pain as they put my bone marrow into overdrive to pump out those white blood cells, I'm so glad they worked. After three shots, my count today was 7100!

So that's the good news. The bad news is that there really isn't a whole lot of literature out there that discusses the long-term effects of Neupogen on my body...there is always a possibility that it could permanently compromise my body's ability to make sufficient white blood cells, or, at the worst, cause leukemia. That's always a great conversation...

"Erin, your best rate for cure (from breast cancer) is to go into surgery disease free, and your best shot at that is maxing out AC at 6 rounds and completing 12 weekly rounds of Taxol. Oh and by the way, all of this chemo will leave you neutropenic (WBC deficient) so to get through it, we'll have to supplement with WBC booster shots which could potentially give you another cancer."

Awesome.

I even called up the oncologist I saw at Seattle Cancer Care Alliance, and they concurred with my doc's opinion. Since that clinic specifically treats breast cancer, they have more experience with patients on the same chemo regimen as me and said that giving the Neupogen shots was standard protocol for patients on weekly Taxol. This news is supposed to make me feel better.

I'm really glad to be back on track with my chemo and more than 2/3 of the way to the finish line. I think that my body enjoyed the chemo vacation because after my round today I'm feeling pretty crappy. After five months and thirteen rounds of chemo, I'm just waiting for my body to cry Uncle! At least I'm looking better than I'm feeling...I took off my scarf during chemo today and all of the nurses (and a few patients) were oohing and ahhing over my head of hair. It's not quite long enough for me to go au natural in public yet...I need another 1/2" or so...but what girl doesn't love a compliment?

Hopefully I'm feeling better tomorrow before Brian injects me with the first of my three days of shots on Wednesday. I need a good day to plant my peonies and blueberry bushes before my bone marrow gets smacked into overdrive!

Thanks so much for all of your good thoughts and prayers as I struggled with getting my WBC up...keep 'em coming!

Tuesday, February 23, 2010

Another week without chemo :(

I went to Madigan yesterday feeling good. I was proud of my suppressed immune system for getting me through air travel and a sick husband sniffle free! I was confident that an extra week without chemo would surely help that white blood cell count...

Not so much. My count yesterday was 800...lower than last week. Boo :(

I absolutely HATE that there isn't a darned thing I can do to help my WBC count go up. There are white blood cell booster shots I could take, but since the number that measures my WBC production increased slightly (meaning that my bone marrow is doing its job, but very slowly) my doctor feels that giving me this booster could permanently slow my body's natural WBC production. Obviously that would be bad, so I have to wait out another week.

This interruption delays my chemo timeline by two weeks. While not the end of the world, if I'm further delayed next week, there is a possibility that I would go into surgery early, then finish up the chemo afterward. My best rate for cure is to go into surgery disease free, so the more chemo I get before surgery, the better my chances...so you can see why an early surgery wouldn't be ideal for me.

In other news, Brian and I took advantage of a beautiful Seattle weekend to explore something new for both of us...Discovery Park. It was my first public outing without a scarf or wig...here is a photo of me and my (very short!) hair...




Please continue to send good thoughts and prayers my way, specifically that my WBC counts rocks when I go back next week!!!