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terminal cancer

Started by Brego, May 20, 2022, 04:04:37 AM

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Brego

My husband has just been diagnosed with the deadliest and most aggressive of all organ cancers.  Average survival rate is less than a year.  Given his age and the fact he has been in very poor health for a very long time, odds are he will be dead before the year is out. 

When I told my chair, the second thing he asked me was "How's your book manuscript going?"

I get it.  I'm that assistant professor who has taken too long to do what everyone else seems to do so easily.  Thanks to major reconstructive surgery and a neurological disorder, I'm in pain every day of my life.  I have PTSD.  I'm disabled. I'm a sexual assault survivor.  And now I will be widowed twice in 15 years. 

Because my university (R1 - let's call it Moo State) is located in an isolated rural area, my husband and I are home on the east coast for the summer.  We have access to two of the top five cancer centers in the country here.  My chair is reluctant to discuss a duty-point exception for the fall (I'd teach online).  He assumes I will return to Moo State this January.  Maybe he'll luck out and my husband will croak before then. 

Friends have suggested I take FMLA in the spring. I can't afford that; I'm carrying two mortgages (my husband's, a portion of my parents, who are now disabled, retired, unable to work, and subsisting off my father's pension) and renting my house at Moo.  I might be able to sublease my Moo house for a year, but I would have to find a tenant quickly. 

According to university regs, I am permitted a maximum leave of absence of one year.  After that I will be terminated. 

I am going back on the market, but in the recent past I've had very little luck.  I get campus interviews at really good schools and am passed over for (no offense)  young  white men with Ivy degrees.  (I'm a queer woman of color who went to the top state school in my field.)

I am at an impasse.  I need to come up with fifteen grand to pay bills for the spring.  I hate living in a place that slavers over Christian theocratic political candidates. There is nothing keeping me at Moo. Most of my colleagues are small-minded unambitious people who appear to  resent my past success at winning prestigious fellowships. I have about five colleagues I can trust. 

My best options are getting a part-time job while I'm on leave, or somehow making a goFundMe go viral (doubtful).  I've considered online sex work but the risk to my career is too great. 

Is there a way to convince my chair and higher-uos to let me teach remotely for a year?  Or am I up shit creek?

I go up for tenure next  fall.  My chair has already said he does not want to grant me the tenure extension to which I am (apparently) legally entitled.

Even if I had tenure, I would not be better off, as Moo is in a state where tenure is under attack.

research_prof

I am really sorry to hear about this situation. As someone who has been in a quite similar situation over the past couple of years, the first thing I would like to say is that statistics are statistics and might not be representative or apply to each individual patient. The second thing I would like to say is that doctors give you the worst of all odds just to be "safe" and I guess legally covered. And yes, I have seen top doctors being wrong about actual diagnosis and prognosis. Call it God, luck, destiny, or something else, you will fight this fight until things are over (one way or another). So do not lose your hope. I had never been religious, but I found religion (in the way I understand it) to have given me hope during this tough time.

Now about the rest of your post: do you or your husband have any disability insurance coverage through your employer? If so, it might be a good time to tap on it. I know some universities give you insurance coverage in case you need to take time off to care for family members. About your chair: please tell him to go f**k himself. Tap on your insurance coverage, if possible, take FMLA and hopefully when your husband will be doing better, you can search for a position at another university.

I sincerely wish you and your husband well.

mamselle

I'm very sorry to hear of all this.

Usually, when people say, "Pick your battles," the battles aren't all happening at once on different territories, as yours seem to be.

Your partner's well-being and your own have to be your priorities--do you have any siblings or other famiiy members who could pick up your parents' mortgage? Now would be a good time for someone to step in there.

Re: book progress, do you have a friend who also needs to get writing done with whom you can do a 'writing contract' in which you update each other? I have three, one for every other day, plus I make use of the monthly research thread here. The May update thread is at:

   

I once edit/counseled a young man who could only spare 15 min. a day in the AM before taking his three kids to school and going off to teach himself how to make progress, para-by-para on his thesis, until he got it into a good-enough draft format that his advisor, who'd given up on him, took him back and helped him finish (he got the degree). His wife had MS and was wheel-chair bound, so he also had all the family chores to do at the end of the day...so there's objective hope that you could keep working on your book, however hard it is.

As research_prof notes, MDs are sometimes wrong, although the fast-acting cancers like those in the pancreas and liver are indeed nasty and have so far resisted the kinds of care regimes that have worked with other forms, so it's important both to be practically alert, and to retain a sense of hope.

It can be helpful to cultivate an awareness of whatever you perceive as good in the cosmos to be yours, too...by enumerating all those things that have benefitted you--even if you had to work for them--and cultivating a sense of gratitude, you strengthen your own resources and caring, and make it possible to go on, a day at a time.

This past year I've been part of a prayer team with two others for one member who's gone through breast CA treatment; her last radiation is today, in fact, and it has seemed as if it has helped her simply by giving her an audience in which it's OK to spell out all the tiny, huge, irritating, distressing, incomprehensible and/or logical issues she's faced; if you can curate such a group for yourself--even here, even if it's not prayer-focused, just for listening to and supporting you--that might also be of use.

Finally, is your chair's unhelpful attitude based in your non-heteronormative self-identification? If that's provable, a bit of sword-rattling might move them off dead center and towards thinking about how to be helpful instead of obstructive.

I mean, does s/he really want a court case on their hands?

If you have a faculty union, that might be another source of practical support, especially in knowing your rights and getting HR on board.

Some of this may sound like pablum if you've been there, done that already--condolences for your earlier bereavement, as well--but it's offered with good intentions and the desire to be supportive in whatever are the most helpful ways possible.

Keep us posted, we're here.

M.
Forsake the foolish, and live; and go in the way of understanding.

Reprove not a scorner, lest they hate thee: rebuke the wise, and they will love thee.

Give instruction to the wise, and they will be yet wiser: teach the just, and they will increase in learning.

research_prof

@M: Some cases of pancreatic and liver cancer can be operable (depending on the case of course). Surgeons nowadays can do miracles. Visiting a surgeon that specializes in a specific type of cancer can be helpful.

Wahoo Redux

Peace be with you, Brego.  I hope for the best for you.
Come, fill the Cup, and in the fire of Spring
Your Winter-garment of Repentance fling:
The Bird of Time has but a little way
To flutter--and the Bird is on the Wing.

mamselle

Quote from: research_prof on May 20, 2022, 06:04:47 AM
@M: Some cases of pancreatic and liver cancer can be operable (depending on the case of course). Surgeons nowadays can do miracles. Visiting a surgeon that specializes in a specific type of cancer can be helpful.

True, thanks for the reminder.

I also missed the edit window for posting the May research and writing thread, it's here:

   http://thefora.org/index.php?topic=2929.msg104934#msg104934

M.
Forsake the foolish, and live; and go in the way of understanding.

Reprove not a scorner, lest they hate thee: rebuke the wise, and they will love thee.

Give instruction to the wise, and they will be yet wiser: teach the just, and they will increase in learning.

Istiblennius

I'm really terribly sorry to this is happening to you.
I don't have great advice and I don't know you, but there are some wonderful R2s and regional comprehensives out there that would probably love to add you to their faculty, depending on your goals and interests. Use your disability insurance and FMLA if you can, enjoy the time you have with your partner, take the time you need to grieve. Eff your chair, who at best is kind of blundering in trying to support you and at worst is unkind and unfeeling. Extend your clock as much as you can, and even if you don't earn tenure you get a wind down of your contract. And then get back on that market when you feel ready.

Puget

I am very sorry as well!

Have you talked to anyone other than your Chair? There should be a procedure for requesting leaves and tenure clock extensions that isn't just at the whim of chairs. Check the faculty handbook.

Have you looked at what is available through your employee assistance program? It likely includes some sessions with a financial counselor who can help you think through the financial side of things. For example, I'm no expert, but your parents (and maybe your husband depending on age) may be eligible for a reverse mortgage that would let them stay in the home and get some equity out until they/their heirs sell it. Or, if you/he aren't living in the home your husband owns (that part wasn't clear to me, since you also mention renting in Moo-town), can you sell the house? It is still a seller's market right now.
"Never get separated from your lunch. Never get separated from your friends. Never climb up anything you can't climb down."
–Best Colorado Peak Hikes

Parasaurolophus

I'm so sorry.

I second the suggestions to talk to someone else about your situation. In particular, HR and your faculty union rep. They will be able to tell you what's possible, and guide you through the process of doing it all, and ensuring that the department complies with the regulations. You mighy only get a one-year leave of absence as such, but there are likely other kinds of leave and extensions which are available to you, since you're in the position of caring for someone. They will know.
I know it's a genus.

Wahoo Redux

Quote from: research_prof on May 20, 2022, 06:04:47 AM
@M: Some cases of pancreatic and liver cancer can be operable (depending on the case of course). Surgeons nowadays can do miracles. Visiting a surgeon that specializes in a specific type of cancer can be helpful.

This is quite true.  My mother-in-law collapsed one day and was diagnosed with aggressive ovarian cancer that had penetrated her bowel.  Her GP got her to a specialist in gynecologic oncology and hu did indeed perform a miracle followed by several more miracles.  Her initial diagnosis was six months and she lived for almost a decade.  There were definitely some rough patches but the quality of her life was still pretty good, and she was an absolutely terrible patient.
Come, fill the Cup, and in the fire of Spring
Your Winter-garment of Repentance fling:
The Bird of Time has but a little way
To flutter--and the Bird is on the Wing.

little bongo

Seconding the good wishes, and I hope you'll be able to take some of the suggestions here.

Hegemony

Oh, Brego, I am so sorry to hear about all this difficult news.

Your chair is a pile of #*&*. Your chair is lower than the lowest scum of the earth. Few of us have a chance to make a real difference in the suffering in this world. Your chair had a chance, and chose to add to it. I have nothing but fury in response to him.

I was in a similar situation when my mother was diagnosed with terminal cancer. My chair said, "You go take care of her. Take as long as you need. We'll figure it out." They did something clever with sick leave until FMLA kicked in, and they covered my classes in some way that I never figured out because they did not bother me about it one bit, they just made all the arrangements and left me free to work on my own problems. That is the only possible humane response.

These days, with online teaching so common and so easy, what could possibly be the justification for not letting you do it in these circumstances? I'm asking rhetorically. Do you have any allies or reasonable people at higher echelons, perhaps a dean? Someone who can hand down from on high the instructions to let you teach online for a year? Or even someone who will warn your chair that if they lose you, they will not be granted a line to replace you? (And that therefore they should do what they can to keep you.)

If you have an employee handbook, get a copy and read it carefully. If you have a union, get the union on the case. I would also suggest a canny lawyer, who can tell you what decisions on the part of the chair might be actionable. If it's all going to fall apart, the threat of a lawsuit might keep your chair and university in line, if sheer human decency does not.  In particular they should never try to get away with not granting you a legally deserved tenure extension. No way, no how.

In my experience, the approach that has the best chance of succeeding is to present all the problems to the relevant higher-up (your chair, or if he is completely irrational, someone higher) with the solutions all neatly appended. Something like, "I know we both want my classes to continue to be taught well and on time, and for my book work to continue, and for everything to run smoothly. And of course on my end I also want my husband to continue to have access to the best cancer treatment available. So I think our best way of ensuring all that would be for me to move my classes online to be asynchronous -- my fall 'Basketweaving Intro' classes and then my spring 'Advanced Baskets' and the two 'Basket Workshops.' Of course the extra advantage of this is that we will get those students who want online classes in our field, where we're lagging behind Western Moo U. in our online numbers, so that will help that constituency and let us know how the online numbers will look for future years. Does that look good to you too, or are there some ideas you have for adjustments?" Of course emphasize the advantages to him, whatever they might be.

I'm so sorry you have to hassle with all this, with everything else you have on your plate. Keep us posted if you can. We're here rooting for you.

Brego

Thanks, all.  And thanks to Hegemony in particular.  I remember you from the old boards way back when. 

Talked to trusted tenured colleague in my department who says, "We HAVE to accommodate you."  Apparently the chair has been handing out favors for faculty who want to teach remotely from their temporary European posts, and, more important, faculty with legitimate health risks related to pandemic.  Colleague also said that, if I want to, I should take every single tenure extension I'm entitled to

I talk to the associate chair (trusted colleague's spouse) tomorrow. 

Just thinking about having to find another job in all of this makes me want to throw up.

Brego

p.s.

The cancer is absolutely inoperable and absolutely metastatic.  He has a 2% chance or less of making it five years.  The oncologist was very clear. He will not survive this.

Wahoo Redux

Quote from: Brego on May 21, 2022, 08:04:58 PM
p.s.

The cancer is absolutely inoperable and absolutely metastatic.  He has a 2% chance or less of making it five years.  The oncologist was very clear. He will not survive this.

I am so, so sorry.  I've lost several family members to cancer and my wife is a cancer survivor.  All my thoughts and prayers go out to you, for whatever that is worth.
Come, fill the Cup, and in the fire of Spring
Your Winter-garment of Repentance fling:
The Bird of Time has but a little way
To flutter--and the Bird is on the Wing.