Last Friday, after pacing and waiting a return email I got a phone call from the NP I saw on Wednesday. She explained that Thursday had been her day off and that she wasn't ignoring me, in fact she had spent most of her morning discussing my case with lots of physicians. Here is what was decided.
1) I absolutely was not coming off the tamoxifen (phew)
2) The vascular doctors would like to see me that day in about 2 hrs if I could swing it
3) It was fine if I ran
So, I pick up yet another new specialist to add to my repertoire, a vascular specialist. She walked into the room and as she was closing the door, she looked right at me and said "You are not going to like anything I have to say".
I knew, right there we were talking being on a blood thinner.
She explained her reasoning. The blood clots were clearly being caused by tamoxifen and we cannot remove the cause of the clots and we need to decrease the risk of the clots going to my lung (She repeatedly keeps telling me there is only a 5% risk that a clot would migrate from my calf). I begrudgingly agree.
We talk about all the blood thinner options and what my preferences would be (no dietary restrictions, take a pill once a day, minimal blood draws) and agree to start on Xarelto. To give it at least a 3 month trial. It takes 21 days to load on the medication and it's main claim to fame is that the pill looks like the poop emoji
Given that this is my general feeling about the whole situation, it seemed only fitting.
She can see my shear disappointment about having to start on a new medication. She encourages me to run, fly on airplanes and in general live my life.
We discuss how I am clumsy and she explains that I will be bruised and just recommended I avoid falling down 10 or more stairs and striking my head.
And because there is seriously something wrong with me all I can think of is the scene in Wayne's World when he asks "Will you still love me when I'm in my carbohydrate, sequined jumpsuit, waking-up-in-a-pool-of-your-own-vomit, boated-purple-dead-on-a-toilet phase" "Yes" "Party, excellent"
I refrain from responding to her with "Party, excellent" and just take a deep breath and nod.
Then I go pick up the giant pack of Xarelto to start with (it's very clearly labeled for what I take in morning and what to take at night) and has a warning sheet that is as wide as my wing span.
The next morning I go for a run, and because I'm still having a lot of calf pain it is like running with a peg leg. But, I can still run.
I start taking the medication and after 48 hrs on the medication I start having some right sided (the side of the clots) chest pain under my lumpectomy scar on and off through out the day. However, when I get home from work (after I leave the hospital) it becomes worse and pretty consistent. To the point that when I breath in it hurts more. I know I have to go the ER to get checked out, but I don't want to. My main reasoning "I didn't even go to the ER while I was on Chemo...." so apparently that meant that I will never go to the ER again.
7.5 hours, standing chest xrays, EKGs, 3 failed blood draws, 1 IV placed into my bicep via ultrasound by a resident with a 5 inch needle, 1 chest CT with contrast (going to feel like you peed yourself) and 1 cup of urine later it was determined to just be muscular, not a clot. I felt silly for going in. The ER attending, resident, RNs and everyone else assured me that this was a very smart move and that I should always get it checked out. I also learned that it takes 3 days before the blood thinner really has a chance to start working.
Now, I have gone for another run and actually have very minimal pain. I do have a very bruised left arm from failed blood draws and the successful IV placement.
And I can still run. Trying to focus on the positive as we start the Adventures of Blood Thinners! Stay tuned for the next chapter. Hopefully, it involves less trips to the ER and more running.
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