Wednesday, May 20, 2009

Decisions Decisions??

Hi Everyone.

Its Jodi here. I'm finally giving Jason a break from all of his hard work:) I know I haven't written on here directly but I read everything and I have been truly uplifted by the love and support you all have shown. We have AMAZING family and friends and we can't express enough how much it means to us both. Thanks to all of you.

The last week or so has been draining both mentally and physically, but we know it is taking us closer to the end goal (good health and living a long happy life!). We've had a lot of appointments and have several big decisions before us.

Currently we are meeting with the radiation oncologists and medical oncologists to figure out the best plan of attack for me and my particular situation.

The first doctor we visited was the radiation oncologist. We were told that if the cancer had spread to 4 or more lymph nodes, radiation would be a definite yes as they have statistics to show its success in reducing the likelihood of the cancer reoccuring. With 1-3 positive lymph nodes however (I have 2), they really don't have much information to work with. My radiation oncologist did suggest radiation for me, but when asked the absolute reduction in reoccurance that radiation would offer, the answer is not as convincing as we had hoped for. He stated that 15% of cancer patients will have a reoccurance in the site location (the spot where the cancer started). With radiation we could reduce this % down to 5. That alone sounds good, however radiation would only be helpful if the cancer came back in that site location. Many do not. The overall reduction in reoccurance would be between 2-4% overall. There are also several short and long term side effects to consider in making this decision. My biggest fear would be the long term impact to my heart as they want to do radiation on the chest plate as well as the lymph node area, and with the chest plate, there will be at least some exposure to my heart and lungs. Fortunately, we don't have to make a decision on radiation for several months as it would be the last stage in the process and would come 1 month after completion of the last chemo treatment.

As for the Chemotherapy (our meeting with the medical oncologist), we feel pretty confident that we're getting the right recommendation for the standard treatment, but we need to decide if we want to take part in a nation wide clinical trial for Avastin. Avastin is a well established FDA approved anti-angiogenesis drug that has shown excellent results with patients with advanced stages of cancer. It has not been tested on people with early stages however, and that's where I would fit in. Many of the medical experts believe it will have very positive outcomes but obviously they don't know, which is why its in trial.

We actually got a second opinion on this trial today at a different hospital and they felt strongly that if they were in my shoes they would do the trial. They felt the potential upside outweighed the side effects and they did a good job of explaining the science to us. Bascially Avastin works to stop the production of additional blood vessels in your body. As a grown adult, I have the blood vessels I need and normally do not require additional production. When cancer tumors form however - they need the blood vessels to feed on and help them grow. There is plenty of evidence to show that when a tumor already exists, cutting off the blood vessel supply significantly slows the advancement of the tumor and in some cases has even shrunk the tumor. The hope is that along this same line, if the supply of additional blood vessels is cut off, this could prevent the tumors from forming altogether. I hope they are right. The downside of the trial is that it extends my length of treatment anywhere from 8 extra visits to 30 extra visits and there is a 20% chace that I will be given nothing more then a placebo. Like I said, not an easy decision to make!

Regardless if I choose to do the clinical trial or not, all the oncologists so far have agreed that I should receive the "standard" chemo cocktail of 4 "AC" treatments every other week, followed by 4-12 treatments of Taxol (either weekly or every other week). If I choose to do the trial it will be administered along with the standard chemo treatments.

So.. those are the decisions we are battling this week. We are taking our time however, researching everything we can and talking with as many doctors and patients as we can. We're confident that we'll come up with a plan that is the best fit for us and when we do well run with it.

I know Jason had mentioned it in a past post but we are still planning to do the Lurie Cancer Survivors Celebration walk on June the 7th. For those of you that plan to join us, make sure to sign up on the web-site and let us know so we can all do it together.

Love all of you and thanks for following!

"Drag your thoughts away from your troubles...by the ears, by the heels, or any other way you can manage it" - Mark Twain

Friday, May 8, 2009

More Good News

Happy Friday! Just a quick update to pass along more good news. We found out yesterday that Jodi's breast cancer is not a result of genetics! This is significant for two reasons. First, if Jodi carried either the BRAC 1 or BRAC 2 gene mutations, which are known to contribute to breast cancer, she would have a high risk of getting ovarian cancer in the future. Second, if she carried the mutations it is likely there would be other family members carrying the mutations as well. Obviously, we are thrilled with the news!

Also, I added two new links to the blog. The first link will direct you to a form letter that can be sent electronically to your respective Senator advocating sponsorship of the "EARLY Act". The EARLY Act is a bill that seeks to increase awareness of the risk of breast cancer in women under the age of 40. This topic has obviously hit home with Jodi and I over the last month. The bill has gained a lot of traction in the House, and was just recently introduced in the Senate. Please click on the link, enter your information, and click "send"....the whole process will take less than two minutes...I promise! :)

The second link leads to the registration page for a Cancer Survivors' Celebration and Walk being held in downtown Chicago on Sunday, June 7. Jodi and I are planning to take part in the walk and would love for anyone located in the greater Chicago area to join us. The walk is being put on by the Lurie Cancer Center at Northwestern. There is no fundraising requirement to take part in the walk, and the $15 registration fee includes a t-shirt. All of Jodi's treatments to date have taken place at Northwestern, so we will be supporting the hands that have been supporting us. Assuming the weather is good that day, we will tentatively plan to have a get together on our rooftop after the walk. Please let me know if you are interested so we can plan accordingly!

Have a great weekend!!

"What lies behind us and what lies before us are tiny matters compared to what lies within us" - Ralph Waldo Emerson

Tuesday, May 5, 2009

Flying High!

As mentioned in the previous post, we were planning to get the pathology report detailing Jodi's cancer yesterday, but after a long day of waiting we called the surgeon to find out that she doesn't share pathology results over the phone. Fortunately, she was able to get us in this morning....but we had to endure another night of the waiting game. At first, we were worried that maybe the results were so bad that the surgeon would rather talk to us in person, but after a few minutes we resolved to enjoy the night knowing there was no sense in beating ourselves up over something out of our control. We went on a great walk with Jodi's brother Ed, who is in town from Los Angeles, to Grant Park, Buckingham Fountain, and Millenium Park to clear our mind...it was a beautiful Chicago night. Although Jodi was a little sore during parts of the walk, taking a two hour long walk around downtown Chicago was a huge accomplishment for her. She is healing wonderfully.

We woke up this morning feeling good...it is tough to explain, but we just had a feeling that we were going to hear manageable news this morning. As it turns out, we were right! The surgeon told us that the pathology report was much better than she expected after completing the surgery. In total, she removed 15 lymph nodes, only 2 of which were cancerous!! Jodi and I were prepared for the worst and could barely contain our excitement when the surgeon walked us through the pathology report. Here are the specifics:
  • Stage 2b. This is on a scale of 0-4, 4 being the most serious. We had ourselves mentally prepared for Stage 3 so we are thrilled with this.
  • Two tumors in the left breast - one was 2.7 cm at it widest part, the other was .7 cm at its widest part. 2.7 cm is a not a huge tumor, but isn't small.
  • The margins around the tumors came back clear. This is a good thing...it means that the surgeon removed both tumors in their entirety.
  • The tumors were both estrogen positive, which means Jodi's estrogen levels are what drives her tumor growth and the spread of cancer cells in her body. This is good because there are chemo drugs available that can suppress the effects of estrogen on cancer cells
  • Radiation may be used in addition to chemo, but isn't a sure thing given that Jodi had less than 4 cancerous lymph nodes.
  • Given that Jodi has 2 infected lymph nodes, there is a good chance abnormal cells have moved within her body, but the surgeon indicated that it is highly unlikely that other areas (the brain, liver, lungs, etc.) have had enough time to metastasize, or develop cancerous tumors, based on the pathology results. Chemo should kill all abnormal cells that have spread to other parts of Jodi's body....hopefully before any further metastasis occurs. This is obviously very encouraging!

That is all I can think of at the moment...it is more than enough good news to pick us up from the occasional knock down. We will meet with the plastic surgeon this week to make sure Jodi's incisions are healing properly. We also have appointments scheduled with a medical onchologist to discuss chemo and a radiation onchologist to discuss the potential for using radiation in Jodi's treatment program. We will keep all of you posted. Thank you for your continued support...whatever you are doing is working!! :)

"It isn't our position but our disposition which makes us happy" - Anonymous

Friday, May 1, 2009

We're Home!

Hello everyone. Once again, we would like to thank all of you for the well wishes...they are helping us keep our spirits up, which correlates directly with us beating Jodi's cancer. We will thank each and every one of you when things calm down a bit....in the meantime, please keep it coming!

The doctor kept Jodi in the hospital again last night as she was still in quite a bit of pain yesterday afternoon. We were happy to stick around longer as Jodi received the A treatment from the staff at the hospital (watching the Bulls triple-overtime win on the 46 inch flat screen in our room wasn't bad either:). This morning Jodi woke up and was herself again...she was up and moving around, laughing, and even took a shower and washed her hair (with a little help). By 10:30 this morning she was given clearance to check out of the hospital and we returned to our spotless condo (thanks Mom, Lois, and Roger). Over the course of today, Jodi made significant strides:
  • She has weened herself from two pain pills every four hours to one.
  • She is moving around freely and is able to help herself to food/drinks
  • She can already hold her arms out so that her elbow is on an even plane with her shoulder. This movement is necessary so that the scar tissue in her underarm doesn't form and curtail the range of motion in her arms.
  • Finally, and most importantly, her sense of humor is back in full force!!
If it weren't for the fact that her chest is bandaged up and she has drains hanging from her that collect fluid from her incisions you wouldn't know that she just had a double masectomy on Wednesday morning....she is doing great!

We will enjoy a nice relaxing weekend of movies and the occasional walk and await the results of the pathology report. I will send an update when we get the pathology report and have an idea what the next steps in Jodi's treatment process are. Have a good weekend!

"Wherever you go, no matter what the weather, always bring your own sunshine" - Anthony D'Angelo