the new drugs have started

i am now on day four of the new drugs.

they are cotellic and zelboraf. if you look anything up on the internet about them or how they affect patients, please don't tell me. i need to believe that these are going to shrink these damn tumors once and for all and i don't want to hear about other patients stories because i just need to focus on my own story.

between the two of them, i take 11 pills a day. add to that the pills that take for swelling, nausea, and my anxiety and i am at 15 pills a day.

the side effects of them include: nausea, diarrhea, severe reaction to the sun if my skin is not protected (blisters on my skin), skin rashes, fatigue, fevers, jaundice, joint pain, vision changes, can affect my liver which would likely show on my bloodwork before i would know my liver was having problems...to name a few of the most common...

i need to be very careful to stay clear of people who are sick due to my immune system on these drugs. if we fly, i have to wear a mask if we fly to protect myself from any germs and wipe down my seat and the tray. that will be great as people will think that they need to stay away from me when in fact it is me that needs to stay away from them.

so four days in, some of the side effects have kicked in - i will spare you the details. but i am hanging in there.

the recovery from the hospital continues on. getting sick and the stay in the hospital really took it out of me. i am surprised and frustrated by how long it is taking me to bounce back (and by bounce back i mean to the regular exhaustion levels before treatment). so as frustrated as i am, i am taking it day by day and sometimes hour by hour.

my mood has been pretty low key lately, i kind of feel like the character sadness in the movie "inside out". i am just tired (literally and figuratively). i am tired of being so exhausted and going on i-don't-know-how-long-anymore-of-feeling-like-shit. i am tired of feeling never caught up and always behind on life. i am tired of missing birthdays and anniversaries because the days on the calendar move by differently now, based on how i am feeling not based on my ability to plan ahead or track important dates at all it seems. that doesn't mean i am not picking up the boxing gloves. i am. it is just taking me a little longer this time to tie the laces on them. don't worry, i am not implying anything by that other than the truth. which is i am tired. and i think after all of this and the huge diagnoses and the losses that have come along the way for friends and loved ones. i deserve to be tired and that is ok. i am not going to pretend for myself or for anyone that things are any different than that, if i did, i wouldn't be telling you the real story and that doesn't do any of us any good now does it?

i have decided to take a couple of weeks off of work. i need time to rest, recover, and be with family. taking time off from work is really, really hard for me, i have rarely done it in the last 8 years unless i absolutely had to because i was recovering from surgery, in the hospital, or recovering from the hospital. for me mentally, being able to work always made me feel like i was in the fight (keeping my routine) and it was the one thing in my life I felt like i could control that cancer couldn't take from me or make me feel like i was drowning withclue what to do or say next. it has been a mental game for me and it has worked to help me keep going. but i now know i need the down time, and maybe i should have taken more along the way but i can't beat myself up about that now. what is done is done. i can only look ahead, and that is true for much more than work. a book "us against them" i am reading by fredrik backman (chris - you were right, makes it hard to do anything else but read), sums up how i feel about work probably better than i could with my own words, 

"when everything else is collapsing, you throw yourself into the only thing you know you can control, the only place you feel you know what you're doing. everything else hurts too much. so you go to work and hide there, the way mountain climbers dig holes in the snow when a storm hits."

so i will spend this week at work getting ready to be out for a couple of weeks.

on the medical front, scans will be in august sometime (date tbd) to see if these meds are working. we all know that they are kicking mine and the tumors asses, right? right.

well i am going to head to bed so my big brother doesn't get mad, he watches the time on these posts and i get texts if they are after ten. but maybe because it is a saturday he will give me an extra 30 minutes;)

please send your love and mojo to beth as her scans are coming up on tuesday to see how the chemo is working and i know that she will hear that it is.

please also continue to send all of your love and prayers to judy and her family as she in now in the good care of a hospice facility instead of at home as was originally planned.

thank you. i appreciate it and i know they do too. xo