Tuesday, November 1, 2016

next steps

since yesterday was my mom's birthday and it was halloween, i didn't have time to get back on the computer last night so i thought i would give a little more info on how yesterday went.

when we got to scca and i went to talk to my scheduler about timing on a counseling appointment i had, she let me know that my counselor is no longer working at scca.

that was a total blow that i didn't see coming.

at all.

i had been going to my counselor for probably the last year. she was part of my team, and i really appreciated that i was able to talk with her on a regular basis. for me, having someone to talk to outside of family and friends is important. it is part of the lifeline for me in finding my way through this fight as a mom/wife/daughter/daughter -in-law/sister/aunt/friend/cousin/boss/peer...the list goes on and on. because while i am all of those roles, i am also the cancer patient. i am the one going through the poking and the proding, the muscle aches, the fatigue, the pain, the exhaustion...and that is just the physical stuff, which in many ways doesn't even compare to all of the emotional stuff. so she was a neutral party and didn't have stakes in how i felt or what i would say. i could just talk and cry and say whatever i felt at that particular moment, and she took it all in. and gave me encouragement along the way.

so to have no wrap up, or heads-up that it was coming, is hard.

i lost one of my team members and that is really tough.

i could see the counselor that is taking her patients, but to be honest, i feel like i need some time to grieve. it is a loss for me. and i really don't want to start over with someone new. i don't want to walk them through all of the background. i don't want them to have to get to know me and my story. i just don't have the energy to do that right now.

maybe with some time, i will feel like diving back in again.

following that news, we got called back for the results.

as i wrote in the update yesterday, the tumors have not changed in size. which honestly was  a blow. i had wanted to see some progress from the last two months of treatment, i wanted to know that it was working. but i was thankful that they tumors had not grown  and that there were no new tumors (worst case scenario).

so we talked and weighed the options. i could start the second drug now.  that comes with the risk that my liver goes into failure again, i have to stop all treatment, and go back on steroids.

sometimes the drug i am on has a delayed effect, meaning it could be working but it will take longer for the progress to kick in. it could be that this drug i am on is not going to help me. we really don't know which of those two scenarios it will be.

so it was really my decision to make, but i also had to consider the holidays are coming up. if i go on the second drug, not only could it make my organs not cooperate, but it could also introduce other side effects than the ones i currently am dealing with. and as my oncologist always says, quality of life is just as important as the medical statistics.

and i really want to be able to enjoy the holidays with my family.

so, we decided to go four more rounds with the current treatment and do scans again at the end of december. if the tumors have not decreased in size, i will start the second drug at the beginning of january and will take on whatever comes from that.

but if all keeps going as it is now, i will have a good holiday season. the current list of side effects aren't fun, but they won't prevent me from having fun. i couldn't know for sure that i could say the same for the second drug.

so in the end, that was the decision that we made. definitely not an easy one. of course i wonder if this drug is working, and if it isn't, whether i would be better off to start that second drug now so it can start working.

but there are never easy answers. there are never answers that we know will be the right answers.

i can only go with my gut.

and let's hope it is right.

oh, and the lump. saturday night i found a lump in the lower half of my left leg. my oncologist felt it yesterday and decided we need to do an ultrasound. it could be something going on with a blood vessel, we hope it isn't a tumor. i will do the ultrasound on thursday afternoon and my oncologist will call me with the results. so one more thing to worry about, and i will say that being able to feel it is super unnerving, whatever it might be. so, i am hoping for good news that is not melanoma and we can get it taken care of. fingers (and obviously toes) are crossed.

well, i am so tired it is unbelievable, and my brother is going to be all over me tomorrow for this post going out after 10pm (laura h -- i saw your note in the card you sent mom about how it makes you laugh that stevie is my bedtime police;)), so i am going to hit the hay.

goodnight peeps.

happy wednesday.

hope it is a great one for you.


  1. We have 50 toes and 50 fingers crossed for good results on Thursday. Heck, I'll even have my chickens throw in their toes too - that's another 32:)

  2. I'm sorry the news wasn't better. I'm thinking of you and keeping you in my prayers.