Crossroads

CoolBreeze · 01-05-2012, 07:26 PM

I've been Stage IV since May 2011. Have had cancer since August 2009.

I work in a high school as the Principal's Secretary, a job I love.

School secretary is not a normal administrative/secretarial job. It's more physical. You run the school - deal with lots of kids, are up and down and talking to teachers and kids all day. When anything happens on campus, its because of me. I am in contact with lots of people every single days. When a teacher is sick and they need a sub, they come talk to me. Subs talk to me every day. Kids who need the principal talk to me. People who need to be on campus sign in with me. I work with the custodian to make things happen on campus, and of course, I work with the principal.

I am bragging, but I am very good at my job and sought after. I've been asked to go to other schools and asked to go to the District Office.

Needless to say, I am out in the public eye. I worked except for my mastectomy in 09, and I've been off since October 3rd '11, my liver resection. I'd be back now except for C-Diff.

I have to go back February 1st, or my job protection runs out.

I am recovering from C-Diff and it's been two weeks. It's less likely <knock wood> that it will recur. But, I am weak and very tired. It seems impossible that I will be back Feb 1, but it's a month, you never know.

A long time ago my oncologist told me the danger comes from internal infections (like c-diff) rather than external I'd get at school, like colds and flu. However, he's several times asked me, "are you still working" and seems like he thinks that's a bad idea. Last time I mentioned whether I shoudl continue, he didn't comment. I will ask him outright at my next appt Jan 18th but he's only one part of the equation.

I would get only $800 on disability. I owe some student loan so they might take that out of the disability which would make it less.

My place of employment has some sort of thing where if you are diagnosed with a terminal illness with less than a year to live, they'll pay your entire salary for one year. I don't know the details and I don't know if what I've gotten already (6 months of full pay) would take away from that. I've been there 6 years so there is some small retirement pay but whether I could get that with disability or not, I don't know.

I have a very bright 14 year old sophomore - he's an A+ student in IB. He does lots of other stuff like being on the National Science Bowl team, and he wants to go to MIT. My husband is 11 years older than me, and is 64. Our former plan was for him to retire at 70, me to continue to work. We don't have much in the way of savings so my husband was going to use all of his social security pay for college expenses (about $2,000 a month), keep working until the kid was done with college, and I was going to use all of my salary for college too. (My husband's salary pays the bills). Then he could retire and I could work or retire as finances allowed.

Now, I likely won't make it that long.

My only life insurance is through my work. If I no longer work, I can pay on my own, but for only two years. If I die after two years, my family gets nothing.

I have so much to think about: finances, of course. I like my job but hate getting up in the morning, but when I don't have something to do, I don't do anything. My health - is working in a school dangerous for me at this point?

If I leave, I can never go back. I'm at my dream school. If I had my way, I'd just take the rest of the year off and start fresh, but they won't let me do that I'm sure.

Please help me sort this out, and if you are Stage IV, please share what you have done. I can't post this on my blog because I don't want my coworkers to know my thoughts and they read it.

Thanks.

Barbara H. · 01-05-2012, 08:51 PM

Hi,
I have been reading your posts, and you are very much on my mind. I am also stage 4 and have always continued to work in a school. I taught 3th grade for many years, but moved to 5th three years ago. We are departmentalized so I currently teach 75 students. In addition, I share my room with aftercare after school. I worked full time through AC +T in 98, and only took off a month when progressed to state 4 in 2004 and had to have brain surgery. I had two brain surgeries after that and returned after one week after the last one. I would not recommend that, but at the time I did not want to be away from my class.

As you can understand I have certainly been exposed to illness through teaching, but I sill have a better immunity than the new teachers who have have not been exposed to the number of students that I have. My oncologist does not think I should retire, and I will turn 64 in April. However, I will probably retire in the next 2 to 3 years because as you know your working life does not end after school when you are a teacher.

I am currently on Herceptin and Tykerb. Before that I was on the Phase 1 T-DM1 trial from 07 to 09. You can read my prior posts.

Having said that, retirement is a very personal decision, and only you can know what your body can handle. You might consider asking if they will allow you to wait until fall to come back, and give them the reasons you have posted here.

There are new treatments that will be available for HER2, and I feel you should still keep hope alive that you will be around for a long time. I can understand that you are exhausted from what you have just experienced. My heart goes out to you, and I am sure that with careful thought you will make the right decision for you and your family.

Best,
Barbara H.

ElaineM · 01-05-2012, 08:56 PM

I don't have any rock solid advice, but let me throw a few things into the ring for you to think about.
You have a difficult decision to make. Can your employer give you a less physically demanding job or shorter hours at least temporarily?
Do you feel comfortable talking to your principal about this? Every boss is different. Can you talk to human resources about this without creating issues? I used to work at a school as a teacher and my mom was a school secretary, so I kind of understand your situation a little.
Your 14 year old seems like a pretty bright kid. Would your 14 old be able to apply for scholarships and/or a good financial aid package? Maybe it is time to check with your 14 year old's school to see what might be available a few years from now.
Is your husband healthy enough to work a couple more years part time? Would you be able to get a part time job in a less stressful job when you are able to go back to work?
All the best to you whatever you decide. The main thing is to take good care of yourself, so you can recover enough to do the things you love and need to do. That is the prize. Keep your eyes on the prize.

chemteach · 01-05-2012, 09:07 PM

I'm not Stage IV, but I love my job at my high school too, and like you, am very good at what I do. The students have been on this journey with me since the beginning of the school year when I had my mastectomy and missed several days. They've seen my hair fall out and have watched me weaken from the chemo. I have been back at work because they bring a bit of normalcy back into this disruption. I stay in my classroom and teach all day, and it is the students who inspire me and give me something to do even when I'm worn out by 3:15 every day. Everyone has been so understanding and good to me. I know they would to you too because you're very good at your job. You might feel strong enough by the end of the month to try to go back. You love your job, it's a great school, you are valued there. It might help in your recovery if you feel strong enough to be there.

Putting kids through college will keep us in debt for many many years. Our youngest of five will graduate next year. The tuition costs and parent loans are prohibitive at our salaries, so I understand that concern. Somehow, you will get college paid for and you will have enough money to live.

What's important right now is you and how strong and how well you feel about doing something you love.

7andcounting · 01-05-2012, 09:53 PM

Hi Cool Breeze,

3 years ago I spent a month in the hospital having 4 surgeries due to my cancer. Part of this time I was in ICU. By the time I was put on regular recovery floor I could barely function. I was on oxygen and could only get around using a walker. My body was so beaten up! Also woke up from one surgery to see my arm swollen with lymphadema.

All that to say that was a long time ago and I went on to function normally---albiet while continuing to fight daily with this disease. A month is a long time. Your body can do a lot of healing in that time. If you don't have any more setbacks I hope that you would be able to handle your job that you so enjoy. You sound like a very valued member of your school. Having ajob where you are appreciated can do a lot to lift one's spirits.

You have been through a really difficult time. It feels like you won't get back to being like you were before, but I think there is a good chance that you will. Hopefully you will see gradual improvement. You are a fighter. Hang in there!

Redwolf8812 · 01-05-2012, 09:55 PM

Ann, I pray that you get through this "valley" soon. You don't sound like yourself. As your signature states, you're going for cure, remember? I don't have any sage advice, but all will be well and you'll have the gloves on again soon. Everything you've been through has knocked you down - you'll get up again. And when you do, you'll make the right decision for you and your family.

BonnieR · 01-05-2012, 11:01 PM

You have alot on your plate and have laid it out well. Does your cancer treatment facility have a social worker who you could consult with? They often know the ins and outs of benefits and what resources might be available to you. They see alot of these situations and might be able to offer some clarity or give you options you had not thought of.
And it may sound silly but I believe in "signs"when in a tight spot. Just kind of stay open to something someone says or some indication that points to a certain path. I try to kind of pause in the turmoil and wait for an answer. They can come from unexpected places. Sorry not to have more concrete advice. But keep the faith.

radiant · 01-06-2012, 12:07 AM

From what you are saying, it sounds like you financially would be better off to keep working at some level. I believe that you will heal w/the c-diff situation and be strong again.

In the meantime however, your work has to make a reasonable accomodation to accomodate your disability. So, I believe you could start there and decide what is realistic for you to try and return to - maybe not begin at 40 hours a week.

What do you feel is realistic for you? I hope this helps - it just seems the more you can do some work, the more you can beef up your disability payments when needed.

HTH,
Kim

michka · 01-06-2012, 02:44 AM

Hi Cool Breeze. It is difficult to answer because I am not in your shoes but I am close to you. (age,stage IV liver mets, 2 boys, head of household). What I understand is that you love your job and that you are worried about loosing a salary. But you feel so tired.
There is another parameter: how will your keep your spirits up? By working and keeping your social contacts or by staying home and organizing your life around your family? It is key. Today you feel very tired but maybe in 3 weeks or 2 months you will feel good. Your immune system will not resist if you are tired but will not resist if you are depressed.
If you want to work maybe you could negotiate 2 extra weeks even if you are not paid and/or for the first month part time. (3/4 or 1/2 time?) Do you think this is acceptable? Then you will feel for yourself if you can do it. No need to decide now. Wait for the end of the month. Then if you feel it is still going to be difficult, talk to the school asking for a little less work for a short time.
If you are tired you can always stop but you will have no regrets.
Some of us Stage IV consider that it is time to change lifestyle and others consider that they are going on with their lives because they have a chronic disease and not a death sentence. And some don't have a choice of course but to continue working.
As stated before, you still have a few weeks to recover a little and decide.
Stay strong. Michka

karen z · 01-06-2012, 05:07 AM

Hi CoolBreeze,
I am also not stage IV but I think all of the folks who have answered have made very good points. I agree with chemteach (I am a teacher too but at the university level) that it is really valuable and spirt lifting to be doing something one loves and is good at (and appreciated for). I would find out what type of accommodations can be made regarding your work schedule (it is often the case that something flexible can be worked out) and also see how you feel. There is something very good about structure- having someplace to be and something to do- that helps keep the distracting or negative thoughts at bay. So, I would lean towards trying to stay involved with your school if you are able to. All of this depends on a lot of things, including how strong you are and how flexible the school is, but I know how important structure and being appreciated/needed can be! Good luck with your decision.

sarah · 01-06-2012, 08:44 AM

Hello,
I think Elaine M and Bonnie R and others had good suggestions. It sounds like you will not be healthy enough to go back full time in February so that will require speaking to your principal who hopefully is an understanding person. Or ask for a sabatical or unpaid temp extra time off while keeping the healthcare? or as other suggested, moving into a less physically demanding job.
It's still 3 weeks away so you have a little time to see if you can strengthen your health.
Your boy sounds serious and talented and finding out about how to prepare him to get a scholarship sounds good advice.
sometimes in times of crisis, choices are made for you and the right choice becomes obvious.
Talk to those you can talk to at your school and prepare as if you will return but realize that that is a choice you'll make further down the road.
Now is the time to heal and strength your body and mind.
health and happiness
love sarah

chrisy · 01-06-2012, 09:47 AM

All great comments. You will be guided to make the right choices for yourself. I don't work at a school, but as you know I am Stage IV. Well, I work in management at a skateboard company, so actually it sounds a lot like what you do at the school.

I also love my job. When I began chemo one Friday in 2004 I left Thursday, telling everyone "see you Monday". My oncologist insisted I take at least the first month off! I negotiated with him to let me finish up some stuff I had deadlines on, then set about "not working". By Monday each week I would be in a complete meltdown and within 3 weeks I was back at work full time. For me, it was much better to be at work, and I was (am) very fortunate to work with and for amazingly supportive people. Although I did have the option to work from home occasionally (and I took advantage of this during flu-petri dish season!), for me it was a life saver to be at work.

I agree with several who have suggested that there may be a little more flexibility at work than you think. There are laws, rules and policies - but in the end you are working for people. And people have a way of surprising you - I found true love in the workplace from people I never expected.

I also agree that a month - or now 3 weeks - is a time when a lot of healing can take place now that you are on the mend. You may feel much stronger.

One final point that I think is important to consider. You had a terrible, life threatening complication from your surgery. But before (and just after) that surgery you spoke of it as being done "with curative intent". Hold on to that! You are currently NED and who's to say you will not be around another 20 or 30 years? It's got to be tough to focus on that having been through such an ordeal as you have, but you have proven to be pretty darn tough.

Hang in there Ann

CoolBreeze · 01-06-2012, 12:33 PM

Being NED plays a big role in my question. I feel like I may get to be NED for years and will return to health. But, I'm definitely not there yet and am not sure I will be in a month. I don't want to give up a great job, yet don't know that I'm ready to return.

My work has to make reasonable accommodation - but it doesn't have to be at the same school site. They can put me at the district office, and I'd hate that. My substitute has been great and says she'll still help me out when I come back but I think she's ready to not do this job anymore. I don't want to work just to work - I want THAT job.

If I didn't have to be there so early it would be easier but I don't hear the alarm I set for 9:00 and I don't hear my husband's phone calls when I ask him to call me and see if I'm awake at 9:30. How I'm supposed to get up at 5:00 is beyond me right now.

Sitting home isn't good for me. I waste my day. I do a lot better in a job.

I do feel comfortable talking to the principal but there really isn't much he can do. It's all HR and bargaining contracts.

My son has been told all his life he needs scholarships, especially if he wants to go to MIT or Cal Tech but of course, we still want to contribute. My husband works for the state so he will have retirement we can live on, if I get that far. We'll have to learn to live frugally but we will be safe from starvation, and fortunately, we'll have healthcare for life. I'm the spendthrift which is what I did with my money. I'll just have to stop and we can manage. My husband takes about $1000.00 of my salary to cover some bills and things and so my disability would be close to that.

I don't know, you all had some great points. It is the after-effects of c-diff getting me down, I'm sure of it. That disease messes with your mind, it really does.

rhondalea · 01-06-2012, 04:47 PM

I do not have any good advice for you about the situation you're in (although I would suggest discussing it with a lawyer who specializes in this area of the law) but I did want to remind you that because these forums appear in search engine results, it would probably be best to edit your posts to remove your sig. Although it's not likely, it is possible that if someone were to search for your blog, these posts would be visible in their search results, thereby defeating your wish to discuss this privately.

Rich66 · 01-06-2012, 05:45 PM

Sounds like there are some questions about what kind of flexibility you have. But I wonder if it's not best to plan to go back, do the best you can..and if nothing else, being back for a bit might reset the clock should any need to be out come up.

This is a really lame attempt to relate but..
I recently came down with adult chicken pox. Really knocked me down. I work freelance and of course at my lowest point got an e-mail from a client as to my availability for a week from then. I believe the phrase was "Are you up for it?" Oh right..covered in pox and in and out of bed all day and night. Sure..bring it.
Anyways..even the day before, it seemed way too ambitious. But the next day went fine..seemed like being forced back into things helped me. I overdid it that day of course..should have made it an early night but didn't. So next day was bad but it was basically a turning point. Again, not the same thing but all I can offer.

BonnieR · 01-06-2012, 09:47 PM

Rich, it's not the same thing, but coming from the same place. Basically, what a difference a day makes sometimes!
And what Chrisy said is important too. You have recently had a most traumatic event that has knocked the wind out of your sails. So keep the faith. Tomorrow will be brighter. And a solution may present itself. Pray about it. And turn it over.

KsGal · 01-07-2012, 02:29 AM

Well, I am in the same basic shoes as you. I simply cannot make up my mind, and like you, I think I am going to have to wait a month or so to see what kind of shape I am in. Like most things for me lately, the disease will have control of my decision.

My son attended a pretty good college that ended up being covered about 70 percent by scholarships and grants. There are a ton of things available, and Im sure the counselor at the high school can hook you up with a list when the time comes. I feel like after college we ended up with about 30,000 in loans (Im a single mom, so couldn't pay it all up front) out of about 100,000 for the four years.
I know we don't know each other well, but I sure think that the decision should be about what is good for you. What is best for your health, physically and emotionally. Hopefully at the end of this month you have kicked this C diff completely to curb and been able to gain a bit of weight and feel more like yourself. You certainly have been through something traumatic. ((hugs))

sarah · 01-07-2012, 05:48 AM

Hello Cool,
Yes, lots of sensible and good advice. I was wondering if going on an anti-depressant for a while might help? Getting through the cancer treatment and then knocked out by this strange infection is terribly unfair and may have been just too much for you mentally. You're obviously a strong person but even strong people can finally feel as if everything is just too much. You've hit a point where you are overwhelmed. Maybe some drugs could help.
and remember you're NED!!! and have a loving family.
take care, things have a way of working out.
health and happiness
hugs and love
sarah

Ellie F · 01-07-2012, 09:25 AM

Coolbreeze
Just want to add that I feel being hit by any severe infection 'messes' with your mind as well as your body. Not sure of the biology but suspect the bugs give off some sort of chemicals related to mood hence ppl with flu often feel depressed! As a recovering major (not in the league of c diff) infection person I am much more tearful and down than normal and at present finding it difficult to make any major decisions. It will pass.
Ellie

tricia keegan · 01-07-2012, 02:19 PM

Hi Coolbreeze,

It sounds to me on reading your post that you love your job and would be lost without it, possibly even severly depressed!!!
I 'd advise not taking any serious decisions just yet until you're well over your recent illness which may still have you under par and feeling drained.
You don't sound to me like a person who wants to quit her job!