So apparently it's been a little over a week since I last checked in with all of you. In the meantime, mom is now inpatient going through her last day of chemotherapy (today) and one day of radiation (tomorrow, we held two "Care Conferences," and are all working on continuing to breath, taking each day in it's turn and not racing ahead of ourselves (or maybe that's my current mind's focus).
Mom's current status is frusteration and a bit of loneliness, or at least it seems to have been the few times I have made it in to see her. She's frusterated with having to continue to wear "Joey" (her external defribrillator), more leads with electrodes attached (to assist in monitoring her heart), and these are all in addition to her new "port" (catheter that goes straight into her heart, it's like the PICC line before except this one's through her chest instead of her arm and it's wider in size).
So over all she looks like a BMT science experiment. Her eyes still twinkle at times, but she's having a MUCH harder time this time around keeping her spirits up. The break out into the world for that month really improved her spirits as well as her heart and as a result she's getting stir-crazy in her current small space with her lines serving as her "ball and chain". So if you have a free moment some time to go visit her, for 15-20 minutes, the social interaction really can make a difference in her mood. When I was there yesterday, because of my sheer exhaustion, I fell asleep and even then she said it was "just nice to have a presence there" with her.
Just a reminder, though she is labeled officially as being in "isolation," she is NOT in a bubble, she's in a room. This means that as long as you are healthy and haven't been exposed to any illness recently you are good to visit her-she REALLY needs the company. Please just call her before going to make sure that day will work for her as well! Thanks :)
As for the Care Conferences, to be completely honest I was VERY dissappointed with the number of people who attended. Mostly because I personalized the percentage of people who attended from the number we had reached out to. Out of the 300+ that we communicated the event to only about 15 people showed up between the two sessions. The two biggest things I was reminded of by the participants of the sessions were:
1. Numbers aren't what you need to look at, rather look at the support of those who are present and can be used to reach others around them-spreadding news word of mouth. So think of it more as a networking experiment.
2. The title of "conference" sounds more like a lecture than a gathering of people with a common passion (my mom) so this likely drove some people away who would have happily been there otherwise.
So for those of may have even the slightest intention of signing up to volunteer for one of the MANY options in the future (including: driver, errand runner, overnight caregiver/support person, daytime caregiver/support person, meal provider, etc...believe me there will be countless opportunities in the future). Please send me your email address at: wolkate@bethel.edu so that I can add you to our volunteer website. Then you'll be able to access the universal calender with the various "activities" for mom whenever you choose. This is NOT pressure being applied to guilt you into helping us. Rather this is us offering opportunities for all of you incredible people out there a TANGABLE outlet for your love and concern for our family. I would be happy to explain more about this if you have questions, again just shoot me an email!
The other portion of the conference was about a fundraising event in the future, hopefully in the middle of July 2011. So keep an eye out for details on this!
We woud love to hear more feedback from all of you, what is working for communication or future plans, etc I love hearing new and fresh ideas/questions and being challenged in my thought process by all of you. We LOVE creativity and new ideas-so if you've had something on the back of your mind give me a shout out in an email about how to improve anything!
Quick summary about me:
I am happy, but at the same time overwhelmed and burning out. So social interaction: sitting with me or giving me a hug, a random text or phone call really blow my mind right now and keep me smiling for days. It's incredible how much compassion we have that we can share with others. Back to my quick summary, I am trying to exercise more, taking my anger/frusteration/etc to the streets for a nice run, or mediation and other practices to maintain my mental health through (http://www.pathwaysminneapolis.org/). They have been an incredible resource and outlet! Emotionally each day is it's own individual rollercoaster. But I give all credit back to all of you, without you I wouldn't be able to get out of the bed in the morning and keep on running this marathon. Your prayers and continued to support are beyond measure in their ability to sustain all of us right now. So to all of you incredible, marvelous and beautiful people "THANK YOU!!!"
Well back to work for me. Try to post again soon!
Oh BIGGEST NEWS: Mom's transplant is this Wednesday the 15th so I will try to post ASAP after that but PLEASE keep prayers going strong that day and beyond for continued good health of mom and mental endurance for all of us. That day will be the starting day for a whole NEW adventure!
Much love and appreciation,
Kate
wolkate@bethel.edu
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