Today was my final day of chemo. Dr. S is pulling me off my treatments unless my PET scan in a few weeks shows some major changes (which based on clinical signs seems unlikely). He feels the cost/benefit is not worth it and we need to look into other treatment options.
The source of those other treatments: an appointment at Dana Farber with Dr. B (trying to keep an open mind) and Dr. Chan. When that appointment will be is unknown. Dr. S's scheduler is working on it and trying to get me to see both doctors on the same day within a reasonable time frame. My version of reasonable and their version of reasonable are likely to be very different...
As of right now, there is no official "next step" to my treatment plan. Once again, I hang out in Dana Farber limbo, waiting for them to decide my next step. It is a frustrating place to be. I am considering going to Johns Hopkins instead, and have broached the topic with both Alex and Dr. S. Dr. S would like me to go to Dana Farber one more time, and then consider going to JHU. He would support going earlier, but his recommendation was DF first, then onto JHU.
I must admit to being pretty bummed about this situation. I wish my treatment was working to a degree that I could keep on with it, since I am tolerating it fairly well. But that is not the case, so we need to find something else that will work.
7 comments:
Want to curse together? We can invent some pretty creative ones, I am sure.
DF better get their collective arses in gear and get you in ASAP. I am pretty sure they do not want to see Team SMAC on their doorstep!
Hugs, Pook.
Well, opinions are like a$$holes - everybody has one. So, here's mine... do what your gut says and what makes you feel the best. I know it must be incredibly difficult to figure out what that is in such murky waters, but your instincts and persistence have not steered you wrong yet. If it weren't for both of them, you may not even be this far along in your treatment. XOXO Bethie
I think I have an idea to get you moved on from DF faster. Honestly, it's what I do when I want things to move along quickly:
Include the kids! I mean on *everything*. Phonecalls, consults, meetings, appointments. Feed them sugar in excess and bring those matchbox cars Ky keeps banging on everything. As the providers become unnerved and distracted, keep smiling, as if you notice nothing. You bet bonus points if someone poops their pants.
I bet they'll give you toll money for the trip to Baltimore.
We are SO routing for you,we keep saying Outlier all the time, willing this to get you to a place of healing and a clean bill of health. I am glad the options are still out there. I'm upset that treatment thus far hasn't brought you to where we all want you to be. But I continue to pray the big prayers, I continue to keep eyes, toes, and fingers crossed, I will continue to wish on dandelion puffs, and eyelashes,and I continue to HOPE... I will continue to HOPE... I will continue to HOPE...
I can also help with the Team SMAC at doorsteps with poopie pants in hand if needed!
* rooting by the way ;) And just to clarify, those poopie pants would not be mine...
Well the poopie pants could be mine if we wanted that...the more the better! I also have two darlings that can clear a room so the plan is in place.O-k,personally,I am not you,not making the decisions,not in your shoes...but hey I do remember the crap you took from dana farber...follow your heartlike beth says...and I bet you end up somewhere else...oh gosh, the robot looks hard....
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