Captains Log - day 8...

Ok that title was for my sci-fi loving family and friends :)  and since the Enterprise shuttle is making it's way to the Intrepid!

Had a long conversation with my oncologist this morning.  I love that when I leave him a list of questions on the patient portal he calls me first thing in the morning.  I really do appreciate it.  Even if I'm becoming a high maintenance patient :)  lol!

1st  - Brain MRI is CLEAR!  of course that is the first and most important question I wanted answered!

2nd - the dip in hemoglobin to 9.4 he's not concerned about yet.  With getting blood transfused - those red cells don't always last that long.  But they will continue to keep a very close eye on me.  I'm supposed to see him next Friday (the 15th) but he may have me come in for blood drawn on Monday also just to keep on top of it.  In the mean time I am still taking iron supplements.

3rd - As long as it looks like I'm doing well on Zelboraf we'll keep going with it.  Probably plan on scanning in 4-6 weeks.  Zelboraf should hopefully shrink the spot in my small intestine (and lymph nodes) and hemoglobin will get back to normal.

We also discussed any side effects I'm feeling.  Joint Pain - Check! Fatigue - Check!  We discussed sun sensitivity and having to go on this just as we hit the time of the year when we have the LONGEST days of sun light.  You know that time of the year we look forward too all winter?  I thanked him for that and my doctors advice - wear wide brim hats, sunglasses, LOTS of sunscreen, long sleeve shirts and pants.  You know - I should pretty much look like a bee keeper!  haha...  fabulous!  Good thing in the NYC area people can get away with wearing really weird things.  I was going to ask him if that meant I should start wearing my mosquito face mask I have the Amazon?  lol!

We also talked about the ASCO conference that he just got back from.  It now makes sense to me why the hold it Sat-Mon.  With 30,000 oncologists attending you really don't want them all out of the office during the week!  He did talk about how there were a lot of good findings again.  Most along the lines of the articles I've shared - anti-pd1, the braf ones (like Z that I'm on).  So I'm sure when I see him on Friday we'll talk about these some more.  Always like to know what other tricks/plans he has up his sleeve!

So stay tuned for more updates.  I get to have the rest of the week without doctors appointments!


ps - when leaving work today I walked out of the office to see this rainbow.  It was one of the largest and brightest rainbows I've ever seen!

I also saw someone post this sign today (I think it was Kye?).  But it's a good reminder.  Staying up all night worrying about test results never changes the outcome...

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  1. So glad to her your brain scan was A-OK and that Dr. D was so patient with you. I hope you're able to enjoy the rest of your week and GET SOME REST. Thinking of you often!