Post Disney...the Magic is Over. Back to Reality.

What can I say… Our trip to Disney truly was, in a word, magical. We had such an amazing time and my favorite parts were watching my son, and watching my husband watch him. The joy on their faces was the most beautiful thing I've ever seen.

Every day, my little man was so full of love and life, giving lots of hugs and kisses and sharing in all of the excitement around him. He did so wonderful!

As for me, I never felt better. I was able to somehow leave cancer behind and feel normal for the first time in a long time. The warmth and sunshine were great on my bones, and getting around was not a concern at all. In fact, it felt awesome to move so much after being sedentary.

Some of my favorite highlights included: The Festival of the Lion King, Finding Nemo the musical, the Festival of Fantasy parade, the Starwars fireworks with dessert and open bar, eating/drinking our way though Epcot with my parents who were able to join us for the day, splashing around the resort, and of course all the food stuffs including the most tasty treat: dole whip!

We made so many memories! And then… It was time to come back to reality. We all brought back an added souvenir and were feeling pretty crummy, but I ended up in the hospital with strep B. A follow up CT scan showed that there continued to be further progression in my liver, and so my treatment was once again switched. I had been on a combination of Afinitor and Aromasin for a little over a week, with excruciating headaches every day. Waking up with these headaches was just awful and my morphine seemed to be the only thing working to keep the pain at bay, but not the most effective at keeping me functional.

Finally, they became too much. I started to have blurred vision/floaters/lights over my left eye. My sister came late Monday morning to help with the little guy while I scrambled to call my palliative care nurse who reached out to oncology. They decided on a stat MRI.

After getting the pain under control, I opted to go to the MRI alone. Note to self for my fellow patients or their caregivers… Never let someone go to an appointment alone. After the scan I was told to sit tight and wait to go over the results with the on-call oncologist; never a good sign considering I usually go home and hear back in a couple days.

Sure enough the news that I've been dreading for so long hit me like a ton of bricks; The cancer has continued to progress is now in my brain. I have six small lesions and enough swelling to cause concern for risk of stroke, so I was admitted to the ER immediately. They've been keeping me comfortable and today I begin brain radiation.

While I still have plenty of hope and I'm confident that this is not the end for me, I am utterly heartbroken. I don't understand how just this past fall I was no evidence of disease and yet now the cancer is running rampant. Will we be able to get it back under control? Will radiation work?

I don't have the answers anymore than the next person. But what I do have is everything worth fighting for. My son and my husband, my family and friends. I love you beyond what I can say in words.

I am grateful for all of the outpourings of love and support. If anyone is trying to find a meaningful way to help or help others in a similar situation, I cannot say enough good about MetaVivor.org. What we need is research, not ribbons, to save our lives. Please consider a donation in which 100% of your gift will go toward research of metastatic breast cancer. While it may not make much of a difference in my lifetime, we can make a lifetime of difference for someone else.

As alway, much love and many thanks!!!

F it, I'm going to Disney World!

I've never been particularly sneaky or good at subterfuge. My cancer, however, excels at both. When I tried sneaking around in HS (peer pressure man) I was inevitably caught and then made fun of for what I horrible lier I was. My cancer though is soooo good at hanging out under the radar and then emerging in droves for a rave! After reappearing and shattering my hopes of being NED (no evidence of disease) for a long stint, my cancer also outsmarted my chemotherapy. Again. 

I received six rounds of Abraxane and then it came time to scan again. I'm happy to report that my lungs are clear and my bone mets remain stable; the tumors along my spine have been causing minimal pain. It's an annoyance at this point, but not a cause of tremendous concern. 

My liver though....it looks like it's been blanketed in a polkadot pattern throughout. The CT scan noted there are "innumerable" tumors in both the left and right lobes, and that two of the tumors have grown in size considerably since my prior scan. 

Fuuuuuuuuuuudge.

On to the next drug, my fourth line of defense against an extremely aggressive foe. 

As I write this, I am awaiting the results of a stat echocardiogram, to determine whether my heart is strong enough to handle the cocktail we've landed on as a potential means to get this back under control. 

This, you see, is how stage IV, metastatic disease is treated. We weigh the drug options against the risks and hope it works. Eventually, the cancer outsmarts the drug and we start over again, for as long as our bodies can take it. It's a kind of Russian Roulette. 

So I don't buy it when anyone tells me this should be viewed as a "chronic condition." I am not the same as a diabetic... I don't get my insulin, make the right lifestyle choices, and move on with my life. I could be doing everything right, yet my cancer seems to continue to be one step ahead of me, determined to kill me off. 

My husband and I decided to get a second opinion this week. While the doctor was very compassionate, the meeting really only validated what we already knew- we've been receiving excellent care, but I'm at the point where I run the risk of my liver failing. I'm at the point where we may be at our final few treatment options. 

My oncologist and I had the conversation of what's most important to me at this stage-- an aggressive treatment that will leave me utterly wiped out for weeks at a time, or a higher quality of life and a treatment regime that means coming to the hospital weekly but having a higher chance of functioning day to day. I chose the latter. 

I told my oncologist that I really want to take my son to Disney in the next few years. With remorse in his eyes, he told me I'd better plan that trip for sometime over the next few months. 

The only time I've been to Disney was back in HS when I went with our symphonic choir to sing during a candlelight processional. It really did feel like the most magical place in the world and I was so thankful to be a part of that experience. Having a young son, who is obsessed with Mickey Mouse, I cannot wait to see the joy on his face and to share that magic with him! 

I've been living appointment to appointment for the better part of a year. It's high time I start living moment to moment, making positive memories along the way.