Been a rough week or so.
After Kemeny gave me direction to taper steroids - but no actual schedule - I tried to do it myself and absolutely crashed on day five when I decided I was ready for no steroids. Got sleepy at noon and basically slept for 8 hours straight with a short break for dinner. Yikes! My local care team said I definitely went too fast and adjusted my taper schedule.
Then on Monday, for the first time I didn't get cleared for chemo. My platelet levels were too low! I know levels can hold up treatment, but mine have been so consistent for so many rounds, this came as a surprise, and I was worried it would put my surgery timing at risk. I started drinking juices that were supposed to boost platelet count like a maniac. Had a very stressful work trip on Mon/Tues so that didn't help my general emotional state!!
They will check me tomorrow (Thurs) and hopefully I will be cleared for treatment.
If not, at least I know it won't impact surgery timing.
Dr Kingham called today to review the results of my MRI. He said he thinks we need to do two surgeries vs one. He can't tell where there is enough healthy liver to do a resection now, because although the tumors have reduced in size, they are still spread throughout the liver. So he wants us to do colon resection / pump placement on March 27, and then a liver resection after the pump has given me three months of chemo.
And we discussed what happens if I don't qualify for treatment tomorrow, and he said he did not want to delay surgery and I should just skip it. That's a relief for the planner in me - especially since 3/27 is the kids spring break and all those plans to have a few days in NY as tourists with them would be down the drain if the date had shifted.
I guess in truth the planner in me feels like better to know that I need two surgeries now versus finding out the day I am on the operating table. But still kind of bummed that it can't all happen at once. There is such an urge to just GET IT OUT.
In the category of crazy good news, an executive at my company asked me over dinner the other night where we planned to stay in NY. When he heard a hotel, he said wait right here, I'm getting you keys to my parents' three bedroom loft on the lower East Side. It's a straight shot up to MSK but more importantly it sounds like an AMAZING place for us to be with our kids (and post surgery, with my husband and mom) while we are in NY. This exec doesn't even know me well, but he's a peer of my CEO and knows her very well. I was overwhelmed by that gesture and still can't quite believe it.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections