So I just wanted to update on everybody's condition including my own. My sister is still going through a rough road. It seems as if the establishment has given up on her and it's going to be up to us to figure out a way to keep getting her physical/occupational and speech therapy. We can't do anything yet as she's in acute care right now recovering from surgery to repair the hole on the side of her head that never healed. They took a graft of skin from her leg and somehow attached it to the side of her head. I'm looking forward to seeing how it came out when she can get her bandage off. Poor thing, they had to shave her head again and I think finally this whole thing is getting to her as she had a meltdown after the surgery. Who can blame her? She was supposed to be making plans for the summer like the rest of us and instead is totally dependent on other people to take care of her. Our biggest goal now is to get her home with my Mom and Rich, despite their own health issues they are busting their butt trying to get the new place retrofitted for wheel chair usage and making the bathroom usable for her in the future we hope. There is no other way to describe this story but as really sad. There will be a time in the future where we get hope back and I can't wait for that day to come...
Regarding my Mom, during all of this crap as if we didn't have enough problems, found out her cancer is back and has spread to a spot in her lung. Just waiting for another test and she is going right back into treatment with some kind of chemo cocktail. Her attitude is amazing but understandably it's been hard to cope. Everything seems to be overshadowed by Nicole however. That said, she is still doing EVERYTHING to take care of Nicole's situation and we've been grateful for the family chipping in to make sure she's not alone for too long. Where she was staying was pretty depressing to say the least... It would be nice to get some more help from her father and his wife but I guess they have other important things going on, I don't know.
I guess I will save some decent news for last as I know these posts have probably turned a lot of people away due to the depressing tone over the last several months. I wish I could somehow turn all of this into a rosy situation but the real life reality is not very rosy and it would be disingenuous for me to sit here and candy coat all of this. Back to the decent news, sorry! My last scan, the one where I thought it was going to be bad turned out to be not so bad after all! Everything held stable and some disease was even smaller. Just in time to celebrate this though, I developed sciatica in my back and have been dealing with this nagging painful bs for the last month plus now. It's much better than it was as at first, I couldn't even walk. Thanks to my friend Derek who's an excellent chiropractor, I'm walking upright again! The next stage is to somehow get rid of this pain that goes all the way down my leg and I'll be good to go hopefully for the summer :)
I have a ton of stories, some funny some not so funny but I don't have time right now to write an entertaining piece. Just wanted anyone to know who still reads this what's happening. I hope to have some good news here sometime hopefully in the near future...
Time to go outside to the nice sunshine here in Florida and continue to work on my patio. I'm trying to get this place together so it's able to be rented. I need to be in Michigan to support my family and hope to head back by next week.
One quick note, please take a second to look at Bekah's blog which you'll find a link on the right, "True Beauty Never Hurries". We spoke recently and she is great but could use some positive thoughts as she deals with the after effects of so much treatment. She is the only original refractory Hodgkins friend that I met on the old Lymphoma Board who is still around (there are a couple more but I don't know them all that well, Zack comes to mind who could use some positive thoughts as well).
Thanks again to anyone who reads this.
Chris
5 comments:
You may be surprised at how many people are reading your blog, but are having a hard time leaving comments. I've tried several times and couldn't get it to work. Am praying for your family. I know these are very hard times from a medical perspective, but what a caring giving family you have. Please hang in there and know that peole really do care. Thank you for the update.
I still check your blog. I will comment on your friend's blogs if it will help. It is hard to stay positive with all the cancer crap. I don't blog much, my words don't work as well. I keep a caringbridge site and that is all I seem to manage.
Hi Chris
Still reading your blog and praying for you and your family! Sending many prayers and positive vibes to you all!! Sorry your sister is having to endure so much!! I hope she can get home soon to her loving family!! Sorry your mom has to undergo more Chemo.
Happy your scans were stable and some disease smaller!!
I hope things move forward in a positive direction for all of you!!!
Thinking of you and keeping you all in my prayers!!
Donna
P.s. can't wait for your stories!!! They always entertain me!!!
Lots of love and healing thoughts to you and your family.
Jess from NYC, Hodgkin's survivor 3 times over
Hi Chris, I check your blog everyday and hope for new updates. When you had a long absence I made sure you were still occasionally posting on the refractory facebook page so I knew you were still ok. Praying for you and your family and continued strength for you all mixed with happy suprises down the road. You tell the truth, and sometimes its not rosy, but that's ok. I am just glad to see a posting from you now and again. Keep on fighting and enjoy that precious family!
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