fuck cancer

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.

It's amazing that whatever amount of time he has left, he's spending it somewhere that makes him happy.

spot on.

phil : i think you are amazing. to voluntarily be with someone as they go through these darkest of experiences is a measure of a true hero.

other than bh i am not sure i would be able to do what you are for anyone else ..

(and that dadjoke = awesome of the highest level .. )

So now the attending on his floor in the hospital thinks he may be developing COPD, but his oncologist wants a CAT scan of his chest before making any definitive diagnosis. Alan's stuck in this hospital while I'm in his apartment, and I feel like I want to get really drunk.

Sending best, man. You're doing some heavy work there.

ugh copd or even pneumonia is so rough

thinking of u and alan right now

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

this time, the emotional attachment is not quite as intense (my father as opposed to my life partner)

another score for the evil lump.

fuck cancer.

Oh mark :(

:(

ta.
given my history with the old man, tis very different situation than before with bh,
but still, the whole experience is stirring up a lot of emotional chaos that i had buried deep.
i'm just glad i made the mad dash last night to see him in the last few hours of his lucidity.
i am not religious, but yesterday i felt a massive compulsion to make the effort, which given its a 6 hour round trip to their part of the country does make you wonder.
i.e. i was going to go this saturday, but had concerns/weird dreams all week etc

glad you got to do that mark, and all the best to you

Condolences, Mark. I hope you are okay.

i am so sorry, mark, i'm glad you were able to see him while he was still lucid. my best wishes to you and your family.

Condolences, Mark. I echo what everyone's saying about time to say goodbye - I know it's cold comfort.

fuck cancer.

So this is my last night in California, as I prepare to head back to Ohio tomorrow morning. I wish I could say I'm leaving on an up note, but I'm not.

As I get ready to leave, Alan is in a hospital bed with a breathing tube down his throat. After that terrible bout of pneumonia last month, he's got it again, and this time it's really bad. And his own instincts to cough and fight are working against him, so, after having a large amount of fluid drained, he agreed to get the breathing tube and be HEAVILY sedated with Fentanyl and Propofol, so his body can just rest and deal with the major antibiotics he's going to get.

The chemo IS working -- he told me last week he can't feel the swelling in his thymus anymore. But the combination of chemo and his breathing problems are taking a toll. He's been weak as a kitten the last 2-3 weeks, unable even to microwave himself anything let alone do any serious cooking, housework or work.

The worst part is that when he wakes up he's going to be alone. Just at the point where he really needs 24/7 care, I have to go home. I reached out to his two brothers back east, but there is unfortunately a great deal of bad blood and burned bridges among them, and there's no help to be found there. His partner, Debra, is still in New York and due to financial complications can't think of moving until September. His only other nearby relative lives two hours away in Altadena, and she's 70 years old. She's pretty healthy, but in no shape to care for him. And full-time in home care costs about $260 a day, which he simply doesn't have.

His primary care doctor has paperwork for getting him periodic help from county IHSS, but hasn't processed it yet despite four phone calls from me; and that won't be nearly enough for what he needs. Likely as not once he's over the pneumonia they'll have to release him to whatever kind of temporary senior care facility IEHP can help him with.

My wife and I have started a GoFundMe to help his partner expedite her move out there so she can be with him. To help take care of him and, dog forbid, to be with him should the worst come to pass. If you're so inclined, please give, or share, or anything you think might help. Alan's a mensch and he deserves better. http://www.gofundme.com/clobberingcancer/

that is really the shitty iciing on the cake that the cancer waited, til right after he'd moved completely away from his support system (esp his partner), to rear its ugly head

I just arrived back in Ohio today, and got a call from the doctor in Alan's ICU ward tonight. The pneumonia is very severe - they've drained him twice more, and the fluid is infected. More importantly, he can't breathe without being intubated, and long term treatment would require a partial or full tracheostomy.

All of that is moot, though, because pursuant to treatment he got the first CT scan he's had since starting chemo, and the cancer has metastasized. It's already destroyed about half of his sternum, and spread to his lungs, lymph nodes, thyroid and spinal column. Even if the pneumonia could be treated successfully, it would leave him so compromised he'd be unable to receive chemo. Which, given the spread, would be nothing more than a band-aid at this point.

The doctor discussed the options with Alan, and he decided he'd just like antibiotics and palliative care. We may be looking at anything from hours to days.

I am going through all the stages of grief simultaneously.

Fuck cancer.

Oh Phil, that's so hard

Thinking of you! pour it out itt as much as you need, if it helps

<3

sorry phil. fuck cancer. i'm glad your cousin had you around to lean on.

i'm so sorry, phil. sending alan my best thoughts.

fuck cancer.

aw man, fuck cancer

the worst, man.

and fuck cancer.

I just arrived back in Ohio today, and got a call from the doctor in Alan's ICU ward tonight.

Oh look cancer found a way to fuck with you.

Thoughts are with you, man - fuck cancer.