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 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

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."


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!