Saturday, August 16, 2014

Port (Re)placement


Port Placement #2
Yesterday I went in to have my port checked and then subsequently replaced. I had chest pain last weekend that led to a chest x-ray that showed a kink in the line. The nurse had trouble drawing blood from the port which was due to the line being too short and being up again the wall of the vein. All that to say- I needed a new one.

The procedure was really simple this time. I was in a cardiology/cath lab area of the hospital instead of day surgery. I wasn't put completely under like the first time, just twilight stuff and local anesthesia. It was done by a Physician's Assistant that does 5-6 of these port placements a day. It was kinda fun being in the room and seeing the x-rays and what was going on.

The only little bit scary thing was that I was nadir-ing (my white blood counts were very low making me more susceptible to infection). The steroid shot is supposed to prevent that from happening but my doctor said it is just three rounds of very aggressive chemo taking its toll on my body. The Friday before my last chemo, my counts were up nice and high (5X of what they were this time). We are going to have a couple extra days between round 4 and 5 due to a holiday and trip to MD Anderson at the beginning of September. I will probably need the extra time for my counts to come up enough to safely give the chemo next time.

Recovery this time around feels like it is going faster. I haven't been taking as many pain meds and am feeling pretty good today. Thanks everyone for praying specifically for that!

With my new port- yay!

Oncologist Visit
After my procedure, I had an appt with my oncologist. I just love her so much!! She spent an hour and a half(!) talking with me. She never rushes me and spends time answering all my crazy questions. We went over the MD Anderson paper I referred to in Prognosis Data. She always give me such hope and still somehow doesn't sugar-coat anything. I appreciate both aspects so much. The general takeaway was the same as the blog post. Yes, the numbers are pretty dismal, but a certain % of folks do make it through and nothing indicates that can't be me. I haven't had a distant recurrence yet (spread to my other organs) and until I do, I'm still in this game!

She thought my tumors had maybe gone down a little this cycle and the lymph nodes definitely came down a little. Speaking of lymph nodes, I asked her how many of my lymph nodes were "involved" (had cancer) because all the radiology reports ever said were "excessive". She said they stop counting after a certain point so I probably had 20-30 lymph nodes that were cancerous- um, say what?? I asked her how many lymph nodes we had in our armpits- ~30. Seriously, this stuff is just becoming funny now.

Here's another crazy number- there is thing they test at the same time as the hormone receptor stuff called a Ki-67. It is the percentage of cancerous cells actively dividing. I saw a few definitions of high/med/low cutoffs online. One said greater than 20% was high, another said 50%. Guess what my Ki-67 was? NINETY-SIX PERCENT. That means ALL the cancer was actively dividing. Holy moly. I asked my doctor about this too. She said, "Of course your Ki-67 was high. You are IBC, triple negative and we were watching the cancer grow before our eyes." Touche.

On every scale used to judge cancer, I feel like I'm always in the worst possible position - IBC, triple negative, high grade, Ki-67 of 96%, 20+ lymph nodes involved. The way I'm looking at this is God has given me an opportunity to have the biggest possible testimony while still giving me a chance at being cured.

Oh! Here is one good thing. She printed off a study on the experimental drug I've mentioned previously that she is considering adding into the second phase of my chemo- Carboplatin. It has had really good initial results in helping increase the percentage of triple negative patients achieving a complete response. She still wants me to get MD Anderson's opinion but from where I'm sitting now I'm not sure why we wouldn't at least try it even though it isn't completely proven out yet. I think the combination of it and Taxol are going to be a beat down from a side-effect perspective and it will make my second phase of chemo 12 weeks instead of 8. I can do anything for 12 weeks and anything that increases my chance at living, even a little, is worth it.

Chemo is scheduled for Monday, Neulasta shot Tuesday, and then NYC with Brad sans kids on Friday- can't even wait!

6 comments:

  1. Ashleigh - your outlook and positive energy spreads at a rate of 225%! Thank you. Thinking and praying for you and your family.

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  3. اهم شركات كشف تسربات المياه بالدمام كذلك معرض اهم شركة مكافحة حشرات بالدمام والخبر والجبيل والخبر والاحساء والقطيف كذكل شركة تنظيف خزانات بجدة وتنظيف بجدة ومكافحة الحشرات بالخبر وكشف تسربات المياه بالجبيل والقطيف والخبر والدمام
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  4. اهم شركات نقل العفش والاثاث بالدمام والخبر والجبيل اولقطيف والاحساء والرياض وجدة ومكة المدينة المنورة والخرج والطائف وخميس مشيط وبجدة افضل شركة نقل عفش بجدة نعرضها مجموعة الفا لنقل العفش بمكة والخرج والقصيم والطائف وتبوك وخميس مشيط ونجران وجيزان وبريدة والمدينة المنورة وينبع افضل شركات نقل الاثاث بالجبيل والطائف وخميس مشيط وبريدة وعنيزو وابها ونجران المدينة وينبع تبوك والقصيم الخرج حفر الباطن والظهران
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