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.

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!

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!!!

Not-so-lucky Number 13

Yesterday was supposed to be my 13th round of chemo. Unfortunately, my lab work came back with less than stellar results. My white blood cell count was 900...normal is 5,000-10,000! So my treatment was postponed for a week. While this isn't the biggest deal, it just means my chemo timeline was extended by a week, which is pretty discouraging for someone who's been counting down the weeks since October.

The other tough thing is that I traveled on a plane (can you say hello germs?!) twice in the past week and returned home to a sick husband. Here's hoping the masks on the plane helped and Brian was done with his contagiousness before he got home.

On the bright side, at least I had fun while my white blood cells were deteriorating. Hawaii was a blast...the warmth of both the sun and my friends was good for my soul.

I plan on partaking in lots of oysters and vitamin C this week (zinc is supposed to be a WBC booster!) If any of you have any other recommendations, please pass them my way...

I woke up with bed head!

This is a huge milestone for previously bald as a queue-ball me! I officially have enough hair now to wake up with bed head! Granted, it's only about 1/2" long, but that's better than nothing.

I'm pleased to report that while my white blood cell count was a bit low last Monday, it was good enough for me to get my fifth round of Taxol. My diaphragm spasms seem to actually be subsiding (I'm almost afraid to say that thinking that I might jinx myself!) I continue to enjoy my increased energy and the mild Pacific Northwest winter by getting outside for walks almost every day this past week.

I took a cooking class with my mom last night, courtesy of my awesome co-workers friends. We learned how to make artisan bread. As avid as I am in the kitchen, bread has never been my forte. I'm excited to put my new found knowledge to use. I better up the ante on said walks as I crank out fresh loaves of yummy home-baked goodness...carbs have an annoying knack for attaching themselves straight to my bum upon consumption! I was telling my mom last night that my oncology team is going to love me as I arrive to every appointment with a new loaf of bread.

I'll have Brian take a photo of my new 'do and post it soon. Enjoy your weekend!

I'm finally past the half-way point!

Monday marked my 10th round of chemo out of 18, so I'm officially more than half way done with my 18 rounds!!! I'm tolerating the Taxol much better than the AC...I've made it through four rounds without having to take any anti-nausea meds. Besides some fatigue, and these super annoying diaphragm spasms that still haven't gone away, I'm feeling pretty good.

My surgery date is scheduled for April 22nd. I'm pretty nervous for it. I've heard that chemo is the worst part of the breast cancer process, but I'm thinking that chemo is easy compared to having both of my breasts and lots of lymph nodes removed. Besides the fact that one of them grew a tumor, I happen to really like my breasts, and am not looking forward to parting with them. I know that it's all part of the process, and it's definitely worth minimizing my risk of recurrence to do so. I just hope that my reconstructive surgeon can make me some fabulous replacements!

In other news, after being a one-car family since October, we FINALLY got our new car! Brian ordered it through the military auto sales program in the Middle East while he was there, so we saved a pretty penny on it, but it took its sweet time being built and shipped across the US. We picked it up after my chemo last week. I've never had a brand new car before, so that's been fun (and it smells sooo good!) I'm mostly happy to have a car in the garage for me to drive when Brian is at work.

My sister says that I need to do a better job updating my blog. It's true...I do. I just haven't had much to update (which is maybe kind of a good thing!) Thanks for sticking with me on this road...I've still got a long way to go, but I'm getting there, and trying to keep a smile on my face through the process.

My newest family member needs your prayers

I haven't done a good job updating my blog lately...most likely because I spent almost all of December medical appointment free, and was living it up! My wonderful mother and father in law came to visit from Maryland for the first week of January, so Brian and I showed them the beautiful (albeit sometimes very rainy!) Pacific Northwest. We had a great time with them, and even after spending my first 18 years here, I saw some things for the first time (like the Seattle Underground tour and the Museum of Flight.)

I now have two rounds of Taxol under my belt, which means only 10 more to go! I'm tolerating it much better than the AC...just pretty tired for a couple of days following the treatment. While the AC knocked out the breast tumor, the Taxol targets any cancer cells in my lymph nodes, which tend to be more stubborn. Here's hoping that the Taxol is just as affective as the AC was.

And as if my family needs any more challenges, my cousin gave birth on Monday at 35 weeks to a beautiful baby boy, Jake. He suffered from several bouts of apnea, and was taken to Children's Hospital in Seattle for some tests. Last night, an MRI revealed that he has an inoperable brain tumor and will not survive off of life support. Our entire family is devastated...please keep Jenny, James and Jake in your prayers.