Flashbacks for a Friday

A year ago, a lot of things were happening. All at once. That Baby had been born, but we were just starting the testing and treatments portion of our experience. When I think back to how things were a year ago, I can not even believe what desperation and sadness I was feeling with a newborn when I should have been snuggling and happy and sleep deprived from her, not worry and anxiety. Instead of the joy, I was Holding my Baby and Holding my Breath. If you want to go back to the beginning, here is my very first post or you can always go to the Starting Line page.

Lesson Learned… Again

My long term treatment plan has been up in the air. There are constantly new studies released and every nuance makes a difference for what determines each person’s set plan. Literally for the last five months the plan that they said was the absolute best a year ago, was now up in the air and open for interpretation and discussion, oh so much discussion!

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One Year

One really fast yet never ending all at once horrible yet uplifting while surrounded my love and support and definitely insightful year where I learned a lot about myself. One year ago, I was told it would be one really horrible year, but I would get through it. It was horrible, and it was so many other things at the same time. She was right. I got through it. We lost one before he even knew it had started and gained one right behind that when she was born into the crazy only to be the most peaceful of us all. One really crazy year. My thoughts approaching this day are a jumbled overwhelming combination of gratitude, sadness, disbelief, anger, love, frustration, pride and so many things I am working to identify. I don’t even know what to call the day. I have heard cancer-versary, life day, and just THE day. I’ve just been calling it the one year since official diagnosis day since they really told me at the ultrasound/biopsy anyway two days prior.

At some point I will share how we mark this milestone. There is not going to be a party as was suggested at the start of all this. Seems weird to throw a party to celebrate myself, ha! Keeping my girls and the rest of my family close to my side and doing a few of my favorite things. Hopefully they hug me a lot and my girls give me lots of snuggles.

Do Your Job

As anyone who has dealt with their own or a loved ones medical emergency can attest to, sometimes you feel like your job is to make sure other people do their job. There were days I seriously just wanted to scream DO YOUR JOB so I didn’t have to. I have said that I was provided a nurse navigator through my health network system. There were times I could not imagine navigating this process without her. Once the process kept going, she was sort of a last resort to get done what I needed to when I was not able to get things moving. If you don’t have a navigator, as most people do not even though they are becoming more prominent in this sort of setting, it all falls on you and can be even more frustrating. This is where having a notebook, a planner, and a support system buddy at your appointments can really be helpful. You will need to be your own advocate and push people to get done what you need to in whatever time frame is necessary in your situation.

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Slightly Less Than Smooth Sailing

About half way through the Taxol, Perjeta, and Herceptin routine, things started to go slightly less than smoothly. I had some issues with my stomach, a rash, and I was getting more tired each time. Unlike the first set of drugs, these were hitting me each and every week with no time to bounce back. Good for getting the job done I suppose, but not so good for rest and relaxation. And to top it off, we were heading into the holidays. Overall, though, not too bad compared to what I hear from other patients’ experiences.

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Say Anything

So, I’ve been trying to figure out how to write a post about what to say to or how to support someone who is going through cancer, or any medical crisis really. Every time I try to write it, it comes off as really mean and ungrateful. That Guy is blunt about this. There really isn’t a nice way to give specific examples of things said or people who have disappointed me without potentially hurting someone’s feelings or sounding like one of those annoying vague Facebook posts. That is not my intention.

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Like the Energizer Bunny

So I left off as I was going into my third week of this chemotherapy regimen. This meant that it was a Taxol only week. My dad was my buddy this week for my treatment. I think it was the first he went with me. Week four was a three drug week and That Guy went with me and of course I fell asleep as I did every single time he went with me. Week five was back to one drug and a friend was able to go with me, and it was the first I was able to get an infusion without having to see a doctor before hand. My week six treatment was the first my mom was able to go with me. So we all just kept going and going and getting me through this. By the end of the sixth week I would be half done with the second group of chemotherapy drugs. Oh and you know, I started this blog at this point in my story.

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Sidestepping Side Effects – Notes Post Surgery

So a lot of this is kind of unnecessary information, but if you are going to go through the same thing, it is worth sharing with you! My surgery was a lumpectomy and sentinel lymph node biopsy. The surgeon only had to remove one lymph node.

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Karma Saved Me?

One small part of the SVC Syndrome diagnosis and dramatic hospital story that I didn’t include in the original posts is a little detail that really should be unrelated; however, in my mind, it might be very much the reason I am able to blog and share this story with you. I debated, because in no way am I trying to sound like a hero or like I do some generous things or that it should be impressive. It’s really not the point. It just amazes me that something so little and not heroic, may have in some way changed my path. And the responding action that lifted my spirits. [Read more…]

Other Birthdays

I’m not sure what the normal protocol is for life threatening events and survival, but years ago I had blood clots in my lungs (pulmonary embolisms) and obviously I survived. From that date forward, my mom called it my second birthday. On my first second birthday, she even bought me a card and gifts. Maybe even balloons if I remember correctly?

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