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major health update - Roadnotes
to be sure of what will be
major health update
I think I mentioned that I was stressed, had no appetite, and was losing weight? Well, I think 21 June, when Kevin and I went to see Passing Strange was the last time I left the apartment, until I went to the emergency room on 27 June. I got out of the hospital yesterday, after transfusions of four units of blood, a biopsy, and assorted other procedures.

Cancer. Three smooth muscle cell tumors, two in the pelvis, the largest in the abdomen. Current plan is that I see the oncologist on Thursday, the surgeon on Monday, and the surgery should take place about 18 July.

I am alternately resigned and terrified. Various people (Kevin, Victor, Karen, the in-laws, Marci, Jerry, among others) have been offering help in many ways; the big worries are Soren, and money, since I can't work. Still, I go on.
47 looks at the big sky or what was the question?
lydy From: lydy Date: July 8th, 2014 11:06 pm (UTC) (Link)
No words. Thinking warmly and fondly of you.
cjsherwood From: cjsherwood Date: July 9th, 2014 12:54 am (UTC) (Link)
This. And sending hugs to both you and Soren.
funjon From: funjon Date: July 8th, 2014 11:38 pm (UTC) (Link)
holy crap. Sending you good thoughts.
xiphias From: xiphias Date: July 9th, 2014 01:13 am (UTC) (Link)
Wishing you strength.
redbird From: redbird Date: July 9th, 2014 01:59 am (UTC) (Link)

*gentle hugs*

Remember, you can call at any hour if you need to talk to me. (I don't guarantee to hear the phone if I'm sound asleep, but I will take the call if I do.)
red_queen From: red_queen Date: July 9th, 2014 02:18 am (UTC) (Link)
Keep going on. As I said on FB, the world is a better place with you in it. Talk to the social workers at the hospital about getting on disability -- I think they tend to process cancer patients more quickly than others. Many gentle hugs to you and Soren.
nickelchief From: nickelchief Date: July 9th, 2014 02:18 am (UTC) (Link)
Sending optimism and energy from afar. You'll knock this out.
juliansinger From: juliansinger Date: July 9th, 2014 02:45 am (UTC) (Link)
Vlrf. Prayers and thoughts, still and continuing.
From: (Anonymous) Date: July 9th, 2014 03:03 am (UTC) (Link)
love to you. you'll be in my prayers.
fimbrethil From: fimbrethil Date: July 9th, 2014 03:11 am (UTC) (Link)
Oh hon. Hugs and strength and love to you. FUCK CANCER.
cinema_babe From: cinema_babe Date: July 9th, 2014 03:14 am (UTC) (Link)
Crap, crap, crap.

I am so very sorry and wish there I could do more than send you loving healing thoughts.

And I remember that resigned, terrified feeling. I'll be keeping you, those you love and your surgeons in my thoughts and prayers.
From: (Anonymous) Date: July 9th, 2014 03:58 am (UTC) (Link)
It's so scary to get a cancer diagnosis and I hate that it's happened to you. I'm sending you all the cancer warrior mojo ever from this fellow warrior.
lolliejean From: lolliejean Date: July 9th, 2014 04:01 am (UTC) (Link)
Sorry - didn't realize I wasn't signed in. cancer warrior = me.
From: wrayb Date: July 9th, 2014 04:37 am (UTC) (Link)

you're the one

Hi VB. Very disconcerting news. Wish all we well wishers could wish this away but this is between you, your body and the medical interventionist. You are the most important: Centered focus on mental and physical balance and well being.

For what it is worth, piling my wishing on with all the rest being aimed your way.

PS. Saw a comment that VB is now on FB. I am forever interested in all things VB since you first sized me up as the new co-worker on the block.

Much love.
beaq From: beaq Date: July 9th, 2014 06:18 am (UTC) (Link)
Oh, man. What a blow. Every good and hopeful thought headed your way.
evilrooster From: evilrooster Date: July 9th, 2014 10:18 am (UTC) (Link)
Damn, damn, damn. All good thoughts to you, if you'll have 'em, and fingers very, very crossed for the surgery.
mallorys_camera From: mallorys_camera Date: July 9th, 2014 11:06 am (UTC) (Link)
I am so sorry to hear this and wish there was something more concrete I could send you & Soren than good wishes.
annie_r From: annie_r Date: July 9th, 2014 11:28 am (UTC) (Link)
I am sorry to hear this is happening to you. You are in my thoughts. Please let us know if we can help in a concrete way from afar.
kaffyr From: kaffyr Date: July 9th, 2014 12:39 pm (UTC) (Link)
I just saw this, and I am so very sorry that you are going through this. Like everyone else, I have no words, except to say I'm sending out many good vibes, and requests of the universe that it be kind to you. I'm glad you have love and support around you.

And oh, yeah, fuck cancer.

Edited at 2014-07-09 12:40 pm (UTC)
casacorona From: casacorona Date: July 9th, 2014 01:41 pm (UTC) (Link)
Fuck cancer. Velma, I'm so sorry to hear this. So glad that you are getting vigorous care now. You and Soren are in my thoughts.
lamia_prime From: lamia_prime Date: July 9th, 2014 02:19 pm (UTC) (Link)
My god. Much love.
tournevis From: tournevis Date: July 9th, 2014 02:27 pm (UTC) (Link)
Damn. All my thoughts, love and energy. Sending it all cross continent to you and Soren.

*so many hugs*

From: katestine Date: July 9th, 2014 02:55 pm (UTC) (Link)
Thinking healing thoughts in your direction.
mrissa From: mrissa Date: July 9th, 2014 04:25 pm (UTC) (Link)
I think I said something on Facebook, but I have just thought, you know what? cannot say too much of this. I am thinking good thoughts for you. Hoping the best for you. Wanting very much wisdom and skill for your doctors.
lawnrrd From: lawnrrd Date: July 9th, 2014 04:29 pm (UTC) (Link)
I am sorry. You have my love and you are in our thoughts.
katyakoshka From: katyakoshka Date: July 9th, 2014 06:50 pm (UTC) (Link)


I am so sorry to hear that this is happening. My mother found a lot of solace through the ACS survivors network, which has groups dedicated to specific types of cancer. A lot of these groups can give you insights that doctors can't, since they reflect a wide range of experiences with various treatment protocols, as well as the lived-in understanding of where you're at. I'm sure there's in-person support groups affiliated, somehow, with the medical facilities where you are being/going to be treated as well, and I'd recommend those, too. My mother regretted not taking advantage of them sooner (she was first diagnosed with breast cancer in 1993, then uterine papillary serous carcinoma in 2008, of which the primary mass was in her spleen). One of my aunts just lost her husband to intestinal neuroendocrine cancer, and she found, through her online networks, pain management options that worked for him, after multiple attempts by local docs that didn't have the patient perspective.

Definitely talk to a medical social worker about disability and Medicaid, definitely look into your medical marijuana options, too.

Again, I am so sorry that this is happening. Many thoughts and wishes for successful treatment, support and healing to you.
sillylilly_bird From: sillylilly_bird Date: July 9th, 2014 07:09 pm (UTC) (Link)
I'm thinking of you and yours and sending love, strength, and healing.
burger_eater From: burger_eater Date: July 9th, 2014 09:24 pm (UTC) (Link)
Best wishes to you.
persephoneplace From: persephoneplace Date: July 9th, 2014 11:50 pm (UTC) (Link)
Oh ghods. That's sucky in the big way. I will be sending you all sorts of positive thoughts.
jactitation From: jactitation Date: July 10th, 2014 01:48 am (UTC) (Link)
Fuck, I'm so sorry you have to deal with this now, V. Sending all my hopes for everything being the best possible on the health, $, and S. fronts. Wish I could do more than hope.
spiralflames From: spiralflames Date: July 10th, 2014 03:47 am (UTC) (Link)
just stopping by to say i think i left you an anonymous comment...didn't realize i was reading but not logged on! either way, gives me a chance to send another hug.
ladymondegreen From: ladymondegreen Date: July 10th, 2014 04:55 am (UTC) (Link)
*sending strength and patience and hope*
From: diatryma Date: July 10th, 2014 02:10 pm (UTC) (Link)
Oh no. I've been thinking of you and hoping, and I expect I'll keep doing that.
siriosa From: siriosa Date: July 10th, 2014 06:57 pm (UTC) (Link)

holding you in the light

cancer: it's not a sentence. it's just a word.
calling up the light warriors to your defense.
tinywarrior From: tinywarrior Date: July 11th, 2014 12:26 am (UTC) (Link)
Sending every bit of love and good vibes I have your way. And definitely, FUCK cancer. If I have anything that I can do or offer to make anything easier, let me know.
elionwyr From: elionwyr Date: August 5th, 2014 12:28 pm (UTC) (Link)
There's a bit more info about what she might need here: http://nielsenhayden.com/makinglight/archives/015933.html
tinywarrior From: tinywarrior Date: August 6th, 2014 02:16 am (UTC) (Link)
Thank you!!
humblepie From: humblepie Date: July 11th, 2014 02:01 am (UTC) (Link)
Fuck. Much love to you.
damnitnicole From: damnitnicole Date: July 11th, 2014 02:54 am (UTC) (Link)

sun_set_bravely From: sun_set_bravely Date: July 11th, 2014 03:46 pm (UTC) (Link)
Ah shit. Sending all prayers and powerful forces of the universe to speed healing your way.
allartburns From: allartburns Date: July 12th, 2014 12:22 am (UTC) (Link)
From: Graydon Saunders Date: July 13th, 2014 02:48 am (UTC) (Link)
Well, drat.

"All may yet be very well" is true sometimes; I hope this is one of those times.
theperfumer From: theperfumer Date: July 14th, 2014 05:14 pm (UTC) (Link)
! I am sending you best wishes for a successful and happy resolution to everything happening to you!
soloadventure From: soloadventure Date: July 15th, 2014 11:42 pm (UTC) (Link)


Please let us know if there is a way to send a few dollars your way. As always, warm thoughts and love for you and yours.
elionwyr From: elionwyr Date: August 5th, 2014 12:25 pm (UTC) (Link)

Re: help

http://nielsenhayden.com/makinglight/archives/015933.html has info about a fundraiser and health updates, if that's useful to you.
blue_by_you From: blue_by_you Date: August 9th, 2014 10:17 pm (UTC) (Link)
You have been on my mind all day. I wish you peace and health and joy and love and most of all strength.
kore_on_dw From: kore_on_dw Date: September 19th, 2014 05:34 pm (UTC) (Link)
Hi dear, I thought I left a comment earlier but don't see it -- just wanted to let you know I was thinking of you, always with love and hope.
47 looks at the big sky or what was the question?