Friday, June 1, 2018

around here

+++ around here it has been a bit quiet, i am still trying to catch my breath and i still feel pretty numb.

+++ around here i am feeling like i am going through a detox off of my old meds and my routines associated with them. i still reach to take the meds when i eat and then remind myself that i don't need to do that.

+++ around here i took this week off of work, i needed to catch my breath, have a chance to get some rest, and work with Barrett on getting some things taken care of.

+++ around here we have had multiple discussions on next steps regarding treatment. here is what i know as of this morning:
- i am going to start on two drugs i have not taken before that come as pills on either sunday or monday. the side effects from these can include fevers, chills, joint aches, rashes and headaches, etc. unlike before with my old meds that i took with food, i have to take these on an empty stomach 1 hour before i eat or 2 hours after i eat and i need to do my best to take them 12 hours apart. So, living life around a 12 hour swing will become my normal again but this will be different since I can't time it with when i eat which makes it just a little more complicated (of course).
- The radiologists at seattle cancer care won't do the biopsy on my lung to get me into the trial there because it is too dangerous with the major artery right next to my tumor. The biopsy is a must for that trial so I will not qualify for that one. i got that news last friday and it still stings.
- i meet with my surgeon on wednesday to see if he would do surgery to remove the tumors. to be honest, after the radiologist's thoughts i am not too optimistic but i need to hear what he says directly from him. i know he will give it to me straight.
- based on what he says, barrett and i will decide if we will go to texas or maryland to see if there is anyway that i would qualify for trials there. which means being away from home and going through surgery there and scans there, etc.
- it is all overwhelming, there probably is not a better word for it.

+++ around here we are also working on our list of what we called "legacy projects" with my palliative card specialist. these are things that i want to have done in cause things happen quickly and i don't have much time left, which i know is hard to read, trust me - it is even harder to write. it definitely does not mean that i won't pick up my boxing gloves again when i start to take these meds again and go through whatever lays ahead. but it does mean that we want certain things in place and my biggest regret would be not having those things done for my family and my friends if i found that time was short for me. it is very emotional to even work on a list much less to work on the projects themselves, but the time has come to do it - i can't put these things off any longer. more to come on those projects as some of you may want to get them done yourselves just because they are a good things to have done regardless if you plan on 80 more years or can't count on that.

+++ around here i am rooting for judy who came home from the hospital and has started her road to recovery. 

+++ around here i am rooting for beth who went in yesterday for her next chemo treatment and is resting at home today. 

+++ around here i am rooting for our family friend ellie who was recently diagnosed with cancer and very rapidly moved into chemo appointments.

+++ around here i am rooting for lisa who has a follow up appointment today with her breast cancer doctors.

+++ around here i am rooting for jennifer and mike. jennifer had a treatment on tuesday and her and mike flew to hawaii for a few days to recover. I have had mike drinking some mai tais for me:)

+++ around here i am rooting for kaylee as she recovers from her radiation treatments.

+++ around here i am rooting for my new friends kelli and john (john is a stage IV melanoma fighter) as they look for a new trial that will work him. his melanoma has spread, he is in pain, and the latest trial he was in did not work. They are hoping to get in on at the university of washington soon as soon as he can get his strength back.

+++ around here beth let me know that she would love a happy mail campaign over the summer as she continues to move through chemo treatments. you all know how this works, but just in case - you will get assigned a specific week (by my awesome friend kerry who is helping me organize this) and all you do is send a card, post-it note, package - whatever you want, there are no rules except that you send her one piece of happy mail mail the week you are assigned to make her life a little bit happier as she goes through treatment. if you are in, let me know and i will give kerry your name and she will get your organized and ready to rock. thank you in advance for all of you to sign up and make a difference for beth.

+++ around here, as you can tell from above, there are many cancer fighters out there that need your love, prayers and mojo. thank you for sending it to them. i really appreciate it.

+++ around here, i hope that you have a great weekend - mine is going to include time with my sister and niece and barrett and malena. just what I need.

take good care. xoxo





4 comments:

  1. Count me in for Beth’s happy mail ... xox

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  2. Count me in for Beths happy mail too, please. Gloves up for all !

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  3. Count me in for Beth’s happy mail, please!

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  4. I’m in for Beth’s happy mail. ❤️

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