Some things I forgot to mention

I think this is the longest blog break I’ve taken and I have to say I thought about getting on here every day but just didn’t have a chance. Let’s play catch up.

Tuesday – I put most of my update from seeing the oncologist, but there are a few people who have asked questions which reminded me I didn’t include everything. First, how did she know the AC wasn’t working? Quite simply, the tumor is bigger. When she took an external measurement on October 30th it was somewhere in the neighborhood of 4.1cm X 4.6cm. On Tuesday her measurement was 4.6cm X 5.4cm. She said that an external measurement is admittedly a crude estimation, but the difference is big enough that it’s a clear indicator. Even with one treatment, the tumor should have gotten smaller. Even a consistent measurement could have given us some hope that it was doing something. But that much growth, it clearly isn’t working.

Also, some info from the PET scan. If you go back and look at the pictures, the first one looks almost out of focus compared to the second – especially looking at my skeleton. That is because the second one shows “diffusely increased activity in the axial and proximal appendicular skeleton consistent with recent recent marrow stimulation.” Basically, that Neulasta shot to increase my white blood cells obviously worked as my bone marrow is making everything show up that much on the scan. Cool, huh?

Also, the scan shows that the catheter from my port has moved. It is now in the subclavian vein at its junction with the jugular. So it’s working its way out from what I understand. I spoke to my surgeon about this right away and she is going to think about what she wants to do. She usually does not mess with the port once its in unless it stops working. At this point mine still is so it may just stay where it is and keep working, or it could work its way out at which time we would have another port surgery. She doesn’t like to give additional places for infection to start unless absolutely necessary. I totally understand. So she is going to think about it and we will talk about her plan before surgery.

The best part of my report is the findings. “Enlarging left breast malignancy as described with no metastatic disease evident outside the breast.” Hooray!

On Wednesday we went to the review board at Colorado University and had them review my case. It was a good day and I’m glad we went. Basically, they agree with everything my doctors have been doing which is really good. We spent most of our time with the oncologist. He did tell us a couple things that I’ve been trying to find out – first, that it is “unusual” to have tumors not respond to chemo. I’m not sure how unusual but apparently it is, which I suspected. Also, the metaplastic cells that my tumor has are basically known to be harder to fight.

They do have a trial that sounds like it would be a good option for me, but there has to be some residual cancer left after surgery, or cancer has to have been found in the lymph nodes. So, I hope not to qualify. I did sign up for two studies while I was there which are both research studies requiring tissue samples from surgery and no real involvement on my part. The first study has 800 participants and is on pregnancy related breast cancer. Since I was diagnosed before Evelyn was 2, that’s what mine is considered. This is the first time I heard this. The second study has 40 participants and is on chemo resistant tumors. I am hoping that I can help cases like mine in the future.

The best part about Wednesday was that Evelyn was healthy enough to finally come home! I was very happy to see her. Unfortunately, when I went to pick up Fletch from playing with his friend for the day, he was clearly sick. We raced him to the doctor before they closed and they thought at that time it was just a cold. That night, the strider stuff kicked in and Eric was up with him with the barking cough so hard he kept throwing up. He had a fever and sounded like Darth Vadar with a cold when trying to breathe. I stayed away from him and Eric kept him in the bathroom with the shower running for the steam to open him up. He got him back in bed at some point, and then Fletch must have woken up because I found him sleeping on the bathroom floor at about 4am. Eric got him back to his room but said there were a few more incidents during the night. Poor guy. When I woke up, I got packed and took Evelyn back to my folks while Eric and Fletch stayed home in quarantine for Thanksgiving. We have been at my folks since Thursday morning and just got home tonight. It was good to spend time with my sister while she was visiting and I got most of our Christmas shopping finished. We had a good time tonight though – we ordered pizza and put up the tree and decorations which the kids loved. I’ve been working on my list of things to get done before surgery. It’s good to keep my mind busy leading up to it and of course I actually need to get the stuff done so it helps to be organized. I’m not thinking about the surgery all that much. I will just be happy to have it done and to wake up without cancer. I’m sure I’ll be more nervous as we get closer. My surgeon prescribed some Valium for the morning of to keep me calm. I’m guessing I will need it. Tomorrow I start taking showers with the pre-surgical scrub they sent home to prevent infection. It’s very odd to think about that but we are in the home stretch.

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2 Responses to Some things I forgot to mention

  1. Kelly Burns says:

    This all sounds very good Jenn. We will be sending lots of positive thoughts your way over the coming weeks. Hope Fletch recovers soon. Please do not hesitate to let us know if u need anything. xoxoxoxox Kelly, Steve, Rory and Nula.

  2. Sue Joyce says:

    Remember that you can always have James read through your trial paperwork before you sign up for a new one, it’s what he does for a living so he knows a lot about it.

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