fuck cancer

sounds like you were good to each other. i'm sorry he's gone.

e- Much love, and always more love.

thank you, i deeply appreciate all of you for this.

Oh, estela. <3

darling estela, i am thinking of you and sending much love to your fine family.

also, fuck cancer :-(

So sorry, estella.

Oh estela I'm so sorry for your loss, much love x

estela, I am so sorry - thinking of you, wishing you and your family comfort in this sad time.

I'm so sorry, estela.

My love and condolences, estela.

oooh e.

so, sorry to hear about your loss, but you clearly have some fantastic memories, and that's very special.

3 years on from the exit of one evil lump from my world, a new fucker enters.

this time, the emotional attachement is not quite as intense (my father as opposed to my life partner), but due to my experience, there seems to be a demand on my groove for advise for all those concerned.

whereas the reality for me is : no. i do no want to deal with this again. f*ck off and leave me alone.

thanks again, everyone.

i'm very sorry about your father, mark. cancer is so cunning and relentless and its course so horrible for everyone involved. and you have been through so much already, it's just cruel. my best wishes to you and to your father and the rest of your family.

Nothing special to add besides good thoughts to all of you.

My cousin Alan was just diagnosed with cancer of the thymus, a cancer sufficiently rare that only about 400 people a year are diagnosed. Don't know what stage it is yet, but if it's III or IV, the 5-year survivability rate is approximately a coin toss.

This comes after he, a lifelong NYC resident, literally, just moved across the country to Palm Springs, and has no family or support system out there. I may be going out there during his treatment to help him out, take him to appointments, etc.

well, fuck that.

good luck to you and him.

Phil D., if you can do that it will be huge for him. Also hook up with the Cancer Society, I don't have experience in the US, but they should have a ton of resources/staff/volunteers to help out people in those situations. I'm so sorry this is happening.

ugh Phil that sucks

So I'm definitely going to California. I made a deal with work whereby I can work out of our Newport Beach office twice a week, then remotely the rest of the week in Palm Springs. So I'll spend every Mon-Tues in NP, then Wed-Sun with Alan. The rest of the time we're going to coordinate with ACS volunteers to help out. He's already excited because he hasn't even unpacked from his move and can't lift or move anything. And I know from having gone through this with both parents how absolutely exhausted he's going to be during chemo, so I'll be shopping, cleaning, cooking (when he can eat), driving him around, etc.

should be a huge help. awesome that you were able to work that out. best of luck to you both.

Phil you are a good bloke for arranging all of that. just him not going through it alone is a huge thing.

^^^^ otm

You are a wonderful friend and your help will be of immeasurable value. A+++ do you dude, lemme buy you a beer if you are ever in DC!

Phil, you are a champion. I'm so glad you were able to work it out.

Important thing for me is not just that he doesn't have to do this alone but that a family member is there. This side of the family is VERY close, both his folks are dead and his brothers just aren't in a position to take time off or travel right now. And this sounds like a really scary cancer.

God I hate cancer.

BTW if any of y'all live along the route from Cleveland to Palm Springs and want to put me up for a night on my drive later this week let me know! Otherwise it's cheap-ass motels along the I-70 and I-40 corridors.

Moving up my schedule to leave tomorrow morning for California. Got this update from my dad today, which creates some urgency, especially since Stage IV thymic cancer has a 5-year survivability rate less than 50%:

The reason Alan is back in the hospital is because he was again having difficulty breathing. The doctor was stumped yesterday so he ordered a CT scan this morning. The results are not good. This tumor has swollen significantly since last week and is now pressing against and closing off Alan’s trachea. The worst part is that there are several sound medical reasons why they can’t simply go in to do surgery. There are two types of thymus cancer; thymoma and thymic carcinoma. The treatments for both are very different and Alan’s surgical biopsy results won’t be back until Friday. With that said, Dr. Brooks consulted with their senior pulmonary
oncologist and they agreed that they need to immediately shrink this tumor to enable him to breath without intubating him or worse. They decided to start him on a Chemotherapy Cocktail today in hopes that this will shrink this monster. This particular chemo is very often successfully used on lung cancer patients. They can’t give him radiation right now, because the resulting inflammation will only cause more swelling and more difficulty breathing.

Even though the biopsy results are not yet back, his oncologist and the other surgeon are sure this is in stage 4. So Alan is in for a very rough ride. Now that Alan has given the doctor permission to share information with me I will make sure I pass it on quickly while it is fresh in my mind because frankly I’m an emotional soup sandwich right now. Yeah, I make lots of jokes on FB but I love my family and certainly want to help in any way I can. By the way, the doctor gave Alan a few options and Alan wants the chemo now. He will probably be at infusion therapy receiving chemo for 4-5 hours at a time and since this is in fact a platinum based chemo he can in fact have multiple sessions per week. The key is to shrink that tumor while waiting for biopsy results and helping Alan breathe normally.

Shit, that's so gut-wrenching. I have emails with those kinds of details from when my sister was first diagnosed/had surgery, and I couldn't bring myself to read them all the way through. I still haven't.

Your dad sounds like good quality, Phil. Good luck and I hope like crazy that the chemo gives Alan some immediate help with his breathing.

To add insult to injury, my wife found out today that her last living grandparent just died.

jeez Phil ... hugs to you & family, lots of rough news to deal with

sorry phil, that all sounds really rough

but <3 your dad - "emotional soup sandwich"

someone from the other forum i've belonged to for 8 years just died of cancer. he had posted in the 'back alley' (77 equivalent) that he was terminal and heading to hospice, and then all of a sudden he was gone.

I'm so sorry, Phil. I work in hospice/palliative care and it is never, ever too early to talk to someone from the hospital's palliative care team. Heck, depending on the insurance and medical situation, some ppl can get chemo *and* receive hospice services at the same time, which can be a real blessing to the person and family. Oncologists are kind of notorious for not bringing up palliative care, so I encourage everyone to be an advocate for that, like when it is my family I *insist* that the attending doc order a palliative consult. It can be really valuable to have that collaboration, plus a different perspective, plus someone who is usually better at communicating than your average dr joe/josephine.

I work in hospice/palliative care

Hats off to you.

Thanks, quincie, will definitely ask after that at the hospital. (Which looks to be a good facility, btw: http://www.desertcancercenter.com/) I spoke to his brother earlier, who had spoken to Alan in the midst of his first chemo treatment, and he said he's pretty optimistic all things considered.

Thoughts are with you, man. Fuck cancer.

Fuck cancer, hail alan

Man, best indeed to you and yours there, sir. Were I still near Newport I'd definitely treat you to a meal out for a break!

best to you all

heart sinks a bit when i see this thread on top of ile

it is never, ever too early to talk to someone from the hospital's palliative care team.

I was just coming here to post that. It's tough stuff that nobody wants to talk about, but you gotta get that shit (living will, actual will, power of attorney, etc) down on paper now.

^^^ and I recall you also encountered the "oncologists are shit for talking about treatment options when treatment options include comfort care" problem.

Help with practical matters to bring peace of mind to person and family, plus understanding that pain, fatigue, anxiety, depression, psychosocial and spiritual distress of all kinds and part and parcel of physical distress and should all be tended to, not just "oh nausea, here's some Zofran." It could well be anticipatory chemo nausea better treated with other tools!

I've posted a little bit about Alan recently on the "Daredevil" thread but wanted to bring y'all up to date. I arrived in Palm Springs on 5/17 after a shitty five day drive from Cleveland. Alan was still in the hospital, having received a chemo treatment, and they wouldn't release him until they settled some concerns about tachycardia and breathing, making sure he could breathe without the large steroid doses they were giving him. They finally discharged him on 5/19 and I took him home to the apartment in Desert Hot Springs.

Since then I've been helping him with unpacking and setting up his apartment, running errands, shopping, etc.; and taking him to appointments at his GP. He's been in a generally good mood because, having lived in NYC his entire life, he finally has some space of his own. He's never owned a dining room table before, for example; he bought a dining set here and I assembled it for him. I also unpacked his 28 boxes of DVDs and set up a 47" TV for him, so to that extent, he's in heaven. But his breathing is often labored, especially if he's had to walk up the stairs or done anything in the apartment, and he's had a lot of pain because of the tumors in his chest and back. We found a nice recliner at a resale shop for only $34, so that's helped out a lot.

Today is his first outpatient chemo treatment, and he's getting a 3-hour infusion of Taxol followed by a one-hour infusion of Paraplatin. He's pretty miserable -- I think he's experiencing some side effects including hand numbness (which, for an artist, is especially bad), and he wants to be doing anything else right now. I don't know enough about Stage IV cancers of this type to know if something like this ever goes into "remission," or if they just treat it until they can't, or what. I'm hoping to talk to his oncologist (who, apropos of nothing, only has one arm*) privately at some point. It may be too early to even guess at a prognosis until they see how he responds to this chemo and do additional MRIs. Tomorrow he has to come back for a white-cell booster injection, then Thursday he has to see a nephrologist because there's been concern about his sodium levels. He's currently restricted to 2L or less of liquid a day.

So, one day at a time, I guess.

*My dad's response when told this fact: "Well, at least Alan's in good hand." Dad jokes, he's got a million of them.

you're a good family member, phil.

also: i love your dad.

otm

so great that you are there to help him through the day to day

^^

Take care of yourself too.

My mom lived for 8 years with Stage 4 cancer of the esophagus; the doctor estimated at the time of diagnosis that she had only a few years to live.

Hang in there. Phil.

wishing you and your bro love and peace

it's so good you are there with alan, phil, my kindest thoughts to you both. franny otm, take care of yourself as well, it's very heartbreaking and stressful when someone you love has to go through this.

lol dad, wishing you all the best

Today was a bad day -- Alan had an appointment scheduled for 8:30 this morning to get his post-chemo injection of a white cell booster, and just as we were leaving he got very, very short of breath. I asked if he wanted to go to the ER, and he said no, let's just go to his regular appointment. By the time we arrived (a 20 minute drive) he asked me to get a wheelchair because he didn't think he could walk in, and I asked the nurse at registration to bring oxygen. They got him on a tank and his breathing became less labored, they got him the injection, then called over to the ER and we wheeled him over. Spent about 3 hours in the ER before getting a diagnosis of pneumonia, so they admitted him and have him on 3 different antibiotics, have given him four breathing treatments and two doses of some steroid that's supposed to help open up his breathing.

A big part of the problems is that he produces a lot of mucous, but because his tumors are in his chest right under the sternum, across his shoulders and upper back, he can't really cough, so he can't clear his lungs well. The oxygen helps put some pressure behind it to clear them out, but now he's got a pretty bad case of pneumonia. He'll probably be in at least 3-4 days, so he's frustrated that he's right back there again.

Through it all he's remaining very positive, though, despite his frustration. He told me yesterday that, living in his tiny, cramped apartment on Carmine St. in NYC for the last 15 years he was always tense and angry and agitated. He said that moving here, even with the cancer, he feels more relaxed and better than he has in decades.