Back from Disney World

Greetings all my wonderful friends and family. Your encouragement, emails, comments and words of love have really fueled me the last few weeks, thank you so much. I thought about many of you and your out-pouring of love while we were on vacation. I have quickly learned it is much more fun to focus on the love and blessings rather than the fear and doubt.

We returned late on Friday night. We decided to drive straight home since we didn't want to have to do another day of driving and spend a night in a hotel. We learned on our trip down to Disney that Liam has now learned how to quickly climb out of his pack 'n play, making him impossible to contain from running around if and when he decides to get up for the morning (or in the middle of the night for that matter)

As I posted earlier, we had an amazing time at Disney. Though I was ready to sleep in my own bed, use my own shower and lay on my own couch, I was a little heavy hearted about coming home. Jeff was ready to be back, I knew that as soon as I walked into the house I would have to start dealing with cancer "stuff" again. I unpacked, seeing all my notes, pamphlets, special bras and bandages laying about. In Disney World, I didn't have to think about that stuff. I didn't have to take meds, only had to change a "steristrip" (a small tape that runs along my incision) once a day and was in general in very little pain. I found myself tired at the end of the day, but after a full day in 100 degree humid weather, walking around all day, who wouldn't be?

First thing tomorrow morning, the doctors appointments begin again. I am sick of the doctors. I know they wouldn't take it personally to tell them that. I haven't actually counted, but I think I have been to 25-30 doctors appointments/tests since this all began. I have had at least 10 hospital tests, and two surgical procedures. I have only just begun. Tomorrow I meet with a second oncologist for a second opinion (more on that in a little bit), my general surgeon for a follow up to my surgery, and an ob/gyn for a full check up "down there" before the ravages of chemo hit me. I will also be discussing with them my future for prophylactic oopherectomy (removing my ovaries) vs. Hysterectomy. Tuesday I have a bone scan and numerous CT scans.

I have already had a heart scan to make sure my heart can handle the chemo. Its funny, I said to the tech as she was wheeling me into the machine, "Isn't this a little bit like the doctor's physical they give a boxer right before he gets the heck beat out of him?" Just making sure I am healthy enough to get the heck beat out of me. :)

Friday, I have an appointment for my first "fill up." This means I will go to the plastic surgeon and they will begin adding about 50 cc of saline to each of my tissue expanders, the purpose being to grow enough skin for my eventual implants. They will do this process every 2 weeks or so until I have reached the desired size (on average about 400 cc of fluid) I have also asked my sister to come with me before this appointment to a special wig store so I can be fitted for and pick out my wig of choice. On average most women lose their hair about 14 days after their first chemo treatment, so I want to have one on hand for when that happens.

Now on to the chemo question. I have been researching my little brown eyes out. Thank God for the internet, I can't imagine having access to this kind of research even 10 years ago. What I have learned is that even though I am "node negative" if my tumor were just slightly bigger (2.0 cm instead of 1.8 cm) I would be considered stage 2 breast cancer. This matters to me because at stage 2, my chemo treatment would be more aggressive and more frequent. Given my age and family history I had already opted to be as aggressive as possible. Well, there is two recent studies that impact me on this. First, there is evidence to suggest that having chemo in "dose dense" (every 2 weeks instead of every 3 weeks) has provided some significant strides in early research to indicate it has lessened the chance of recurrence. This research is only about 5 years old, but has already indicated an average of 42 % better results. The second study that affects me is the decrease (about 8%) in recurrence of cancer in women who have 4 rounds of AC chemo and 4 rounds of Taxol type chemo. Well this all seems like great news, Kat, go for it right? Here's the rub...neither of these things are considered protocol for treatment yet. In otherwords, its not the default of what oncologists are doing now to treat my cancer. Usually it takes a little bit more time in research and evidence before something will be switched to the new protocol.

Here's where my battle begins...I have a second opinion tomorrow and I would like to put on the table a proposition for me to do the "dose dense 4 rounds of AC and 4 rounds of Taxol". I have already talked to my first oncologist about the additional chemo of taxol and he was not in favor of the idea, since it is not "protocol" yet. This is where the value of numerous opinions comes in. I will probably say this a thousand times, but if you ever have a major medical problem ALWAYS GET A SECOND OPINION!!! I have already learned that with my surgeons, it is so important. I need to discern if I want to continue to push for this very aggressive form of chemo. I have no delusions that it will be easy or fun, but I don't want to wonder if I should have pushed harder many years from now. So for today, and tomorrow that is my prayer request. That I will either find favor with the new oncologist for this more aggressive chemo, or that I will find peace in the decision that the less aggressive chemo is more than enough for my cancer (after all its already gone and the "you are not welcome here" sign is on the door).

I will post pics from our trip in coming days. Thank you a thousand times for your prayers, we felt them from day one and in every detail. I will share more about the "God sightings" we had on this trip later.

love
Kat