Hi everyone, Dana here. John has gone from bad to worse as they told us he would. I saw him briefly this morning, looking really miserable, with dry heaves and a tongue so swollen and sore he had trouble speaking. The docs came in while I was there and decided to put him on continuous IV pain meds and nutrition. He can barely swallow. I think he lost this particular round but all this is right on track with what they told us would happen, so I know he'll come back strong in the next one.
He was understandably grumpy this morning and wanted me to go, so I left to take Lisa and Manuel to the airport and then drove back to SLO for the weekend. Our social worker has also encouraged me to take a couple of days off now while I can. Once he is released from the hospital he will need a caregiver (me) 24/7 for about three months up there in Palo Alto.
A note on the shower thing. The docs strongly encourage him to get up and shower every day not only to get his lungs expanding a bit and avoid issues there, but also to wash the bacteria and such from his skin as he now has NO working cells to fight off infection.
Bill, congrats on getting through BMT and getting back to the gym. I'm happy to hear your taste buds are working again! Spencer, we look forward to the day you and John can meet mask to mask. I hope you both, along with Rich, will continue to check in here. It's really encouraging to hear from you who have been through this and are coming out the other side.
Ellen, thanks for checking on our boys. Looks like they are doing well and that is a big load off our minds.
Pat and Bruce, thanks for delivering lasagna and flan to Mountain View fer heaven's sake! Gosh darnnit! It was delish!
Lisa and Manuel, what can I say? We are eternally grateful. You have been so gracious and giving. You have some goooood karma coming your way!
Pat, Mac, Mo, and Lisa S, thanks for keeping us entertained. I doubt John will blog for the next few days but I will try to keep you all posted, get it?
Posted.
I will leave you with this lovely poem written by Barbara Crooker for her friend who was undergoing BMT and, I'm imagining, was about at the point that John is now.
The jonquils. They come back.
They split the earth with their green swords,
bearing cups of light.
The forsythia comes back,
spraying its thin whips with blossom,
one loud yellow shout.
The robins. They come back.
They pull the sun
on the silver thread of their song.
The iris come back.
They dance in the soft air
in silken gowns of midnight blue.
The lilacs come back.
They trail their perfume
like a scarf of violet chiffon.
And the leaves come back,
on every tree and bush,
millions and millions of small green hands
applauding your return.
--by Barbara Crooker, The Cancer Poetry Project
Xs and Ohs,
Dana
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Dana
ReplyDeleteI am glad to hear you get to go home and amazed by your balance and grace under fire (good-I looked back immediately to make sure no freudian typo on "fire")
and thanks for the poemery--not to go all Mo or anything but fall is falling fast in NE and while I love the empty beaches and still-warm water, not so much the dark and cold that remind me we will soon be chopping water and carrying wood.
one thing I will NOT do again is complain to John on email if I've been out shoveling snow half the day--he shoots back an instant photo of your California yard in all its floral glory.
ok, I guess anybody reading so far has figured out that he is a little smarter than me!!!! (delete this admission before he wakes up!
and this might be as thoughtless as the stupid shower comment, but is it because of the isolation to limit dangers that it has to be you 24/7 as the caretaker? even with insurance being the scam it is, it seems like there should be some respite built in somewhere...
in a way it is a stupid question no matter the answer, because "respite" from direct care would probably mean reassuring your boys, checking on your students and keeping all the rippling circles Posted...
but, still......
one of my strongest memories from the time when Mo was recuperating from treatment (not nearly as extreme as the BQThrilla) is walking out of the hospital one summer evening, standing in the quiet parking lot on the hill above Salt Pond, seeing this gorgeous sunset over the water and just being overwhelmingly grateful for one beautiful moment in the day but simultaneously just as sad that he was missing it.
I guess by now you are very good at knowing how to take care of yourself to be able to do the work in front of you; but please know that if you ever start a blog about how you do what you do I will be ditching this holycow thing in a heartbeat and going over to yours.
who else? (pat)
Dana
ReplyDeleteI am glad to hear you get to go home and amazed by your balance and grace under fire (good-I looked back immediately to make sure no freudian typo on "fire")
and thanks for the poemery--not to go all Mo or anything but fall is falling fast in NE and while I love the empty beaches and still-warm water, not so much the dark and cold that remind me we will soon be chopping water and carrying wood.
one thing I will NOT do again is complain to John on email if I've been out shoveling snow half the day--he shoots back an instant photo of your California yard in all its floral glory.
ok, I guess anybody reading so far has figured out that he is a little smarter than me!!!! (delete this admission before he wakes up!
and this might be as thoughtless as the stupid shower comment, but is it because of the isolation to limit dangers that it has to be you 24/7 as the caretaker? even with insurance being the scam it is, it seems like there should be some respite built in somewhere...
in a way it is a stupid question no matter the answer, because "respite" from direct care would probably mean reassuring your boys, checking on your students and keeping all the rippling circles Posted...
but, still......
one of my strongest memories from the time when Mo was recuperating from treatment (not nearly as extreme as the BQThrilla) is walking out of the hospital one summer evening, standing in the quiet parking lot on the hill above Salt Pond, seeing this gorgeous sunset over the water and just being overwhelmingly grateful for one beautiful moment in the day but simultaneously just as sad that he was missing it.
I guess by now you are very good at knowing how to take care of yourself to be able to do the work in front of you; but please know that if you ever start a blog about how you do what you do I will be ditching this holycow thing in a heartbeat and going over to yours.
who else? (pat)
oh these damn letters I can't see--I didn't mean to make my comment double vision
ReplyDeleteThanks for the update Dana. I'm glad to hear you can get back home for a bit.
ReplyDeleteI'm very sorry to hear that John is feeling badly, even though it was expected.
Mac
I hope John you had a chance to see the Red Sox play last night. The Sox were down for a long time and rose up in the end. They fight and never give up. Geeez, sounds like somebody else we know. Marian and I continue to send out the positive waves from Grass Valley. Go Sox. Go John!
ReplyDeleteMatt
Pat,
ReplyDeleteYour comments were so right on I read them twice. :-)
ah, Lisa, you make me laugh!
ReplyDeleteand I never expected to find a laugh at the B-bar tonight...
thank you for THAT!!!
Hi John and Dan
ReplyDeleteyour description, though difficult for some to read who may not have experienced it or are not familiar with the process is very normal and very accurate. He won't rememeber but this doesn't make it any easier for all involved. I pray the Lord brings peace and healing to John as He won't leave him thru these long days and nights.
We need a cure for all this as you have wriiten dana so maybe next time the 700B can go to Cancer!
Shoot, we'd be happy with just one bil, wouldn't we? Thanks, Rich, for confirming he won't remember this. It does make it a little bit easier.
ReplyDeleteMatt, I loved the story of how Mike and John met. I had never heard that one.
And Pat, if I delete anything it'll be that you'd abandon this Bbar for another. What would the regulars here do without you?
Dana
Dana they are the only regulars that aren't trying to find out--
ReplyDeletemuch as I look forward to the holycowI'mahealthytwin days, this blog has been a blessing in a very big disguise for me...you wouldn't believe how many local venues do NOT solicit my comments...
p.
John Da Man,
ReplyDeleteI assume you're still addicted to e-shit and are reading the blog comments during this trying time for you. It was comforting to read Rich's comment about the normalcy of the stage you're in at the moment.
I'm so sorry my friend that you are hurting and my heart breaks for you and Dana and the boys. On the other hand, if there's anyone who can pull through this, it's you.
Keep the faith John and hang in there Buddy. This too shall pass.
Mac
There is such strength in hope. To feel useless at this time makes me weak. I know you both know how you are the first people I think about when I wake, even (or especially), at 2AM. Always before I return to the land of dreams.
ReplyDeleteMy wish for you John is that you sleep and have surfing dreams for as many hours as possible while you recoup. from the gift of life from your terrific sister.
D, you are always with me as I go thru the humdrum capers of the day. I talk to God all the time and ask her to hold you tight and carry you carefully.
Our positive energy and thoughts are directed to Stanford and this weekend to wavetree.
Much love. Chrissie
Dana,
ReplyDeleteYou are a wonderful writer. I was finally able to connect with this site. I use the Caring Bridge site for Cindy Crocker and it has been so wonderful.
I look forward to seeing you today. Thank goodness for pain meds. xxxoooJanice
Dancing with the Devil – Part One
ReplyDeleteAll quiet on the front
Belies the war raging quietly, just below the skin.
You are dancing, dancing, trying to keep your balance
Your partner is the devil and she knows all the steps
But you are a fighter, a mighty warrior with an arsenal of hopes and dreams, sharpened arrows and sharpened needles, sisters with twin divisions and friends with twin visions
Divide and conquer, fuse and scatter.
Next?
Johnny,
ReplyDeleteIf your blog were a radio talk show, I guess I would declare myself a "Long time listener, first time caller." You have great support from family, friends and a continually growing list of admiring readers. I'm proud to consider myself the latter two.
It may seem I've waited until the middle rounds of the bout to throw in, but the truth is I've been in your corner and cheering you all along. I think of you often and have great respect for your defiance, your strength, your stoicism, and your sardonic wit. Qualities that serve to tip the odds in your favor for the title bout; like packing a horseshoe in the lining of your glove to deliver the final blow.
Best wishes, buddy.
JK (Johnny Boy )