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A recap of the last two weeks and the plan moving forward: September 6, 2014

September 6, 2014

In my last blog entry I spoke about the next step in figuring out a plan and I was waiting for a PET/CT scan as well as a CT scan of my spine……

The results of the tests:

Part one of results:

On my L4, the tumor we tried to “ablate” in June was not totally eradicated and has now grown. There is also a new tumor forming on my L5. In addition to that, the tumor has been pushing into my vertebrae all summer and I now have a fracture in my spine. (which I may have made worse but stupidly tripping and falling while not paying attention walking on a slippery floor) So, we found out the root of my pain: it is two-fold.  they call it a mix of “physiological pain” and “mechanical pain”.

How will we treat both?

The physiological pain: (tumor induced pain)- On Monday, We will inject an epidermal steroid directly into my L4 and L5 to ease the inflammation around my nerves and the tumor and to get me off these oral steroids. Which give me energy and help ease the pain but have made me turn into a little chipmunk face and have made me INCREDIBLY moody to say the least:) Which does not help at a time where I need to be clear headed and sensible with decision-making.

The mechanical pain: (fracture-related) On Tuesday I will go for pre-op testing to prepare for Thursday when I will undergo a procedure where they will fill the L4 and L5 with cement (much more than in June) which will stabilize my spine (may even make me a little taller!) and tho should ease the bone pain. (This will also help prepare me for the next step to treat the tumor) (Side note: I will head to my procedure after my class’s first “official” full school day- I don’t want to miss it!)

Back to physiological pain: After we do the cement, I will have to try and take it easy for a few days( which is never easy for me! They even said to try and not walk too much for 24 hours….big movie day in store!). Then, the following Monday (September 15 hopefully) we will fit me for a cast for radiation. The plan is to give me one extremely high dose of radiation to eradicate the tumors in my spine. Sloan has been using a new procedure and they have a 95% success rate so far with this spinal radiation. I still have a lot to read up on about this procedure but from what I have learned so far I think this is the correct choice.

So that takes are of the spine results of my scans… for the other PET scan findings….On my previous Pet scan (in June), I had five lymph nodes that where still “lighting up”(cancer) in my pelvis, but they were continuing to shrink and lose their light.  On this scan, they are almost all gone! On the other hand, when we focus in on my lungs in the scan, there is now some evidence that lymph nodes in that area, about eight of them, are starting to get fired up and gain some light.  They are not 100% sure and there is “not enough there” to make a clear determination, but with stage IV colorectal, it is likely this could be a metastasis.  Also, since the cancer has already made it to my spine, that can also lead us to believe this may be something to pay a little bit of attention to and not just some type of lung infection. (Although I am not 100% convinced its not because I feel like I have had a cold these last two weeks)

SO the plan for these little jerks who are beginning to light up in my lungs: There is a chemo I had done for five weeks during radiation two years ago called Xeloda. It is an oral chemo pill you take. (one in the morning and then one at night.) There are many different ways people take this, some for 2 weeks straight, five weeks staight, weeks on and off….for me, this time we have decided to do one week on and then one week off of the pills for three months and then rescan mid-December to see if things fade in my lungs, if there was even cancer there and to make sure the cancer is not spreading anywhere else or traveling any where else in my spine. I was able to manage Xeloda fairly well the first time I took it and the side effects are tolerable.  As long as I keep my immune system strong, up some more herbs and stay on track with all my holistic endeavors, I think I will be able to work most of the time and maintain living my life the way i do. (With remembering to slow down, give my body time to rest and to not push myself to exhaustion. THIS will be everyone else’s job to remind me of…I am not always the best at knowing when to take a break!) (The plan is to start the Xeoda after we do the radiation, so not until the end of September.)

This plan did not come together overnight, it has been two weeks full of appointments, opinions, three different hospitals, about 15 doctors….probably the LARGEST spider web decision of my cancer journey so far.  As the disease changes, reaches other organs, moves around…different specialists come on board and more opinions need to be factored in. It can be overwhelming to then take all these opinions, make sure I also remain strong in mine, and then formulate a plan that feels comfortable and worthy of taking part in. For this decision, there were literally over ten paths we could take….so standing in that forest, trying to see what is down each one….well, with ten paths to choose from…it can get a little baffling.

I am blessed to have my family helping me and supporting me in my appointments, insane doctor schedule and decision making.  They have been dropping things within an hour to meet me at  “pop-up doctor appointments”…by that i mean, over these last weeks, with so many doctors to see, I have been getting  last minute calls,” If you can come today, we can see you in an hour.”

I also am continuously blessed by where I work and the support and encouragement they give me every day. I have no idea how I found such an incredible community to work with….I have been so blessed with my community of family, friends and colleagues throughout this journey, it makes taking each step forward and even those steps back, easy to bear.  As i continue to dance this dance with cancer I continue to do it with hope, faith and the determination to heal.

  1. Edras permalink

    Be strong my beautiful friend! I love you so much… God has a great plan for you and you will make it through with fluing colors. I will continue to pray for you!


  2. Sabina permalink

    Kristen, I think of you often and you’re always in my prayers.


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