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Taking a leave from work...

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rmichaels View Drop Down
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    Posted: Sep 17 2012 at 5:33am
Hi There,
My mom has stage 4 (see details in signiture) her last 3 protocols of chemo have been unsuccessful.
My work offers a 3 month unpaid leave which would give me lots of time to spend with her.
My question is when is the best time to do this?  When she is feeling good or when she gets really sick?
IF you have lost somone close from cancer what would you do different? same?
I would really appreciate your advice.
 
Thanks,
Rachel.
Mom dia 8/11 with IIb - IV by 11/11 with mets on liver. 17 rounds Taxol/Carbo then Taxotere, Cisplatin + Vinorelbine, 2 tx of Doxil, Xeloda all unsucessful. 10/12/12 Hospice @ home. Passed 11/7/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2012 at 8:43am
Dear Rachel,

Well, here we both are up in the middle of the night. Smile

You pose a very difficult question with no easy answer, in my opinion.

However, you have asked for opinions so here is mine. I would suggest you do the 3 month leave of absence, as soon as possible, so you can spend as much quality time as possible with your mom. I don't know what kind of shape your mom is in but that quality of time can range from taking her shopping for something she normally would not buy for herself but might enjoy. A new iPad, perhaps, with a bunch of her favorite movies on it? Maybe get a pair of splitters so you can both watch and listen together. Or give her a Netflix subscription and buy a device that can instantly stream the movies so she can watch on TV.

A walk in the park if she is mobile or just sitting together on a couch if that is possible. If she is up to it a trip to a place she always wanted to go to. Again, I am not sure what kind of physical condition she is in.

The only thing that is certain in all of this is that you are a beautiful daughter with a beautiful heart and you will know intuitively what to do with her that will maximize your remaining days with her. 

About a year ago, I wanted to visit with a terminally ill friend but the time would be a lot more convenient for me about six weeks later when I would be in his general area..instead of making two long trips from Los Angeles. I asked an oncologist friend his advice and he told me "I always tell family members/friend of the patient to 'go as soon as you can' because you never know when someone's immune system is seriously compromised what is going to happen to them. Chemo and stress can cause heart attacks/stroke. You just never know what can happen. So I always tell folks not to wait to make that visit." I followed his advice and six weeks later would have been almost as fine but I never regretted my decision. I actually went again in six weeks and my friend said to me..."I am glad you came last time and I am glad we were able to do what we did...I can't do that now." And what did we do on my first visit? We toured the island of the Bahamas and he showed me where he was born and grew up. A house with no toilet or running water. We sat by the beach for awhile and took in that wonderful turquoise color of the ocean. And we went to the movies. And we went to have some grouper and johnny cake, two of his favorites. We also went to Mass together and he introduced me to his friend, The Archbishop of the Bahamas. The second visit, although only six weeks later found him much more fatigued and he spent most of his time in bed. We had a really good visit but it was not the same as getting him out of the house. He was much less animated in our talks. And he was no longer able to go to Mass and he told me "I am so glad you had a chance to talk to the Archbishop." That never would have happened the second visit.

Also, while driving, the first time, we had a very important talk about death. He was basically in denial but at least he clarified his wish to be cremated and we discussed that with his wife when we came home from the drive. It was an important discussion about DNR as well. His wishes were respected. 

On my second visit we talked about death and this time he realized a bit more what was happening to him.
To be honest, though, it was not until my third visit some months later that he had come to terms with the impending end of his life. 

Interestingly, I was able to call the Archbishop who arranged, because my friend was unable to travel, to receive communion at home once a week from his priest. If I had not met the Archbishop I don't believe that would have happened so, again, that first visit was important.

Again, Rachel, this is just my opinion. I do feel strongly about it though and would encourage you to do it now. I believe when this journey takes a downward spiral for mom it will be more difficult for her to spend enjoyable time with you because, from what I have seen, the downward spiral can be very fast at times with diminished functions. The thrust of her last days may be keeping her out of pain which may cause her to sleep a lot which will limit good conversations.

I believe that even if you can't spend as much time with mother in the later stages of her illness she will understand and feel your love even if it is for three hours a day instead of ten. 

Regarding your question about "what would you have done differently?" The short answer is, I was not in a position to do anything different in a major way because there was no paid leave and I would have lost my job.  But I did have a week's vacation due me and as I look back I should have taken it and been with my mother. She entered the hospital for the last time for surgery and died 30 days later. We did not know that would happen and fully anticipated that she would leave after a week and then I planned to help her at home. But home never came. So, yes, with 20-20 hindsight I would have taken my vacation and been with her all day long. She would have been horribly upset if I had lost my job to be with her so that was not a good option.

I was 20 at the time and she was 46. Now 48 years later I had the following wish last week. I wished that mom could be back for one day to see my wife who she never met and her six grandchildren that she never saw and her three great-grandchildren. I saw her laughing and cooking with my wife and joyously speaking to her grandchildren and great-grandchildren... She loved people and especially loved children. What a loss for everyone. Just one day is all I wanted but then I thought about the pain of that day ending. It would be unbearable. It is better this way. She lives in my heart and my children have heard the stories but I am so sad that she didn't live longer. Life.

Rachel, the one thing that is most important, I think, is that whatever time period you choose please don't look back and criticize yourself in any way. Be kind and gentle to yourself. You are a lovely, lovely daughter. Whatever you do will be right and there will be no 'perfect.' Just a horrible disease that has already left a hole in your heart. Please try to find the beauty in each day and please encourage your mom to do the same.

If you ever want to talk..I am sending you my number in a PM.

with my love,

Steve


Edited by steve - Sep 17 2012 at 8:48am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2012 at 6:05pm
Dear Rachael,
I echo Steve's words to the "T"! 
 
I did not take time off and because this happens so fast, I moved in with my mom and worked by day and stayed with her by night.  We had some of our best talks at 2, 3, 4 in the morning....I would not trade that for the world!  It was Mother's Day May 2007, a room came available in the hospital and that too was the best move I could have made for her.  She saw people she hadn't seen in years, we went for drives, we talked and just spent quality time together.  Mom passed peacefully, with me there on June 25, 2007... I have no regrets and you won't either if you follow your heart..
Bless you good and faithful daughter! Hugs, Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Hajdenwurcel Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2012 at 10:15pm
Rachel, when my sister was diagnosed in end October 2008 I knew she will die because she discovered so late the disease.I spent 2 years without measure my efforts to be with her combining work, home office and days out. I wanted to spend as much as I could the life with her. I agree with all words of Steve, stay as much you can now.My sister did not like talk to me about the possibility that she will die and until the last moment she told me we will win the battle, because also I was diagnosed with TNBC when she was going down and down.So my opinion is that like Steve sad, try to spend the days like your mom want to  spend and LIVE, as much as you can!!!!Hug and kisses from Brazilian friend!!

DX IDC TNBC 8/10 age 50; Stage 1; Grade 3; 2 cm; 0/5Nodes ;
KI-67 90% ; BRCA 1 +positive; 8 cycles DD AC/Taxol; 3/11 bi-mx, recon, 6/12 BSO
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rmichaels Quote  Post ReplyReply Direct Link To This Post Posted: Sep 21 2012 at 12:02am
Thanks for the replies.  Mom's scan results were delivered to day and the Doxil didn't help at all.
She had new liver mets and all tumors grew.  The onc said it's up to her if she wants to try Xeloda - which she will try it.  I'm going to see how the first tx goes and then plan on my 90 day leave.
Mom feels pretty good - went out to lunch then some shopping today after appt. 
Trying to make each day count.
Rach
Mom dia 8/11 with IIb - IV by 11/11 with mets on liver. 17 rounds Taxol/Carbo then Taxotere, Cisplatin + Vinorelbine, 2 tx of Doxil, Xeloda all unsucessful. 10/12/12 Hospice @ home. Passed 11/7/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 21 2012 at 2:35am
Dear Rachel.

My heart is heavy for both of you..

one of the main things to think about I think is quality of life. From my experience most people want to fight until the last moment, even though the side effects, from various chemos, can be devastating. Xeloda has the reputation of being a bit gentler than others but various folks have reported a variety of side effects and I have seen a lot of 'tweaking' the dose. 

I am helping someone now who decided to not continue with chemo and is trying to live her life, to the fullest, as best she can. There is no right or wrong here, in my opinion. Just a lousy disease and often a tremendous sadness that we are, often, powerless.

I hope you get to spend some important time with mom and I am so sorry she got a deeply disappointing result.

you and your mother continue to be in my prayers.

warmly,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Sep 21 2012 at 2:47am
Unless you work for a very small employer, you are covered by the FMLA. Under the FMLA, you likely have more options than just taking 3 straight months off. FMLA grants a right to 12 workweeks of leave per year, and you do not have to take your 12 weeks of leave all at once. You can work part time instead - so for example you could work four days a week, or take off three afternoons a week. Or you can take time off intermittently -- an afternoon one week, three afternoons the following week, the entire week after that - whatever would meet your mother's physical and emotional needs. Only the actual time you take off counts - for instance one day off in a week is only one fifth of a workweek. You can find out more about FMLA on www.eeoc.gov.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2012 at 11:20pm
Rachel,

How true as you said..........make each day count.

It's an oncologist call about the 2 treatments of Doxil (how many doses before a response is expected, time it takes to see a response on a scan, options for next step. other TNBC expert opinions etc)

Just want to add to the above member's thoughts with.......consider calling the TNBC Helpline to receive some things to think about as you plan your leave time (and of course, your plan can change as needed).
I have found the TNBC experienced oncology social workers on the Helpline more than helpful and always with good ideas/insights to consider when I have called them.
TNBC Helpline: 877-880-TNBC (8622)l
Monday through Thursday 9am to 7pm EST and Friday 9am to 5pm EST.

Another thought..........you mentioned your Mom went out to eat and did some shopping.
You may have some good recent pictures of your Mom.
Or depending on how things are, you might consider having a picture of you and your Mom......
your Mom and other families members.    I have a friend who took pictures of each adult child and the
parents when they began to fail...... they were glad they took the pictures when they did.   


With lots of caring thoughts to you and your Mom,
Grateful for today...........Judy

Edited by Grateful for today - Sep 23 2012 at 11:22pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rmichaels Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2012 at 1:59am
We celebtated my Mom's 60 bday this past weekend.  Had a photographer come to the party and took lots of family pics of us.  This is a very surreal time and I can't help but feel like I'm having an out of body experience.  it's like I'm here going though the motions but I'm numb.  Mom started Xeloda today and I'm hoping her liver can tollerate it.  keep us on your prayer lists.  xo Rach
Mom dia 8/11 with IIb - IV by 11/11 with mets on liver. 17 rounds Taxol/Carbo then Taxotere, Cisplatin + Vinorelbine, 2 tx of Doxil, Xeloda all unsucessful. 10/12/12 Hospice @ home. Passed 11/7/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lindsay Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2017 at 10:04am
Hello everyone, 
This is kind of on topic and kind of not. I have been lurking in the forums and recognize many of your names. Not a good reason to be here, but glad to see so many kind and helpful posts.
My MIL was recently diagnosed Stage 4 TNBC, spread to distant lymph nodes, hip bone, and top of femur. She is hoping to work for as long as possible. Current plan is chemo every three weeks with PARP-inhibitor. With one treatment under her belt, she is feeling normal still, but we want to stay ahead of things and plan for when she's not feeling as good. 
I'm wondering, what has the process been like to collect disability? How much work is it to get the process done? She's wanting to look into it. Does anyone now if individuals are able to collect disability and Social Security at the same time? She has asked me to help her through the process...I thought I would reach out here before attempting to deal with all the red tape :) 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2017 at 10:50am
Dear Lindsay,

There is a wonderful non-profit http://triagecancer.org/ that I think is a good resource to have your questions answered. If you send me a PM I will be happy to give you the email address of the Founder and CEO of the organization and make an introduction for you. They are a non-profit and there will be no charges for their services. sorry, your MIL is dealing with this and hopefully the PARP helps
warmly,
Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lindsay Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2017 at 11:18am
Thank you, Steve. I will do some digging and let you know if I have other questions. So far, the employer has been very helpful and accommodating, but there are some gray areas as she has only been with the employer for 6 months. 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2017 at 7:04pm
Lindsay,

I'm so sorry to hear of your MIL diagnosis.  Hopefully she will continue to feel normal on treatment.  My friend was dx stage 4 ovarian cancer several years ago.  She filed for SS disability right away and it was granted.  I think the stage 4 dx automatically qualifies the patient, but as Steve suggested, check out the resources he mentioned.  Good luck and hopefully there won't be any red tape in getting it approved.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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