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Kerri Offline OP
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Dear friends,

Many of us know that although we may be currently without evidence of disease, our new normal life may not be anywhere as productive or capable of the same things as we were prior to our illness. We all come from different backgrounds, jobs, occupations, and careers. Some of may be fortunate enough to be able to return to our previous occupations, while others not put things in the past. That's fine with me, because as far as I'm concerned, I'm much happier to be 6 feet above ground!

I became a physical therapist in 1999 and have worked as such until one year ago. I returned to work after my second bout with oropharyngeal cancer and after 2 years of working twice as many hours to accomplish the same amount of work that I did prior to having cancer treatment. I found myself consistently underperforming and getting written up for said underperformance and absenteeism (due to opportunistic infections related to cancer treatments). I was eventually put on probation at one job, even though I had a many years invested into this company with consistently good performance reviews. I was released from on my part time job for similar problems that I could not remedy. I simply could not keep up with my job responsibilities quickly enough in order to meet productivity requirements.

I realize that my situation is far from unique. My husband and I purchase a long term disability policy MetLife when we got married. I drew upon it during my first cancer treatment and recovery, during which I did not need chemo radiation. So my job performance when I returned between the occurrences was better by far than when I returned after my second occurrence (where I had aggressive chemoradiation treatment with complications). I returned to work as soon as I was able because of financial need. But, after 2 years of trying very hard and failing, losing two jobs, I decided to go back on my private disability policy. It was during this time that I also decided to apply for SSDI. I was rejected two times, which I understand is typical. It was at this time that I decided to seek legal counsel in order to assist me in my appeals process for SSDI. I am currently awaiting a date for my appellate hearing, which takes 14 months on average.

Recently, I heard from my MetLife claims specialist that I would be contacted by a field claims representative to set up a meeting in my home. I had a pretty good idea as to where this was going, and I found out reasons why they do this. I was on the right track and that they were going to be setting up surveillance shortly, trying to catch me telling falsehoods, get me to give too much information, check out my living space to see if i might have a second income, etc. I'm not worried because I am not a malinger, but this whole situation is still unnerving. My mother went through this when she was injured at work and she lost the function of her dominant arm as a result a work injury when she was a nurse. If anything, the surveillance it was taken of her actually helped her case.

Since my attorney is assisting me for my SSDI appeal only, I asked him for his personal opinion on whether or not I should seek counsel from someone else regarding my MetLife personal policy. He gave me the name and number of to trusted colleagues that will likely be able to help me.

Over the years my profession has enables me to work withpeople that are malingerers and people who are desperately, deservingly in need of disability assistance and (many times)they cannot get it. I have an uncle by marriage who has been milking the system for decades, and I cannot understand how he has gotten away with it for so long.

If cancer has given me any gifts, one of them is that I now have more compassion and empathy for my patients and others. I now know that just because you may look good, doesn't always equate to feeling good or being good.

I apologize for the length of this post. And could offer see me offer me some advice or any information of help. I will be contacting the attorney that was referred to me and I will not set up a home visit until I can get legal representation.

Love in OCF,
Kerri

Last edited by Kerri; 10-24-2015 07:37 PM.

37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Mar 2014
Posts: 79
"OCF across the pond"
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I applaud you in writing such a fantastic post. I too feel I struggle everyday with the new me . I have had to reduce my hours at work , through fatigue and just coping generally with the perils of eating slowly , or not always having access to eating something that I am able to , then following the dentist hygiene routine that I've had drummed into me , makes the most simple tasks take forever. Oh yes nearly forgot to mention the jaw exercise and mouth stretches, that seem to amuse everyone but me , can't just take time out or rest breaks when you manage a house with vulnerable adults with epilepsy , autism and learning disabilities . Then there's the sweating issue half an hour after taking the pilocarpine , and having to have a quick wash and change my clothes to look and feel presentable enough, whilst still trying to do a good job and look and act in a professional manner . People have no idea of the struggle's we continue to face several times every day . It's nice that people comment that I'm looking great but I agree gives a false view some times of what is like coping with the after effects of this horrendous disease.
That's not to say that I'm not truly thankful for my life I am and I will never take a day for granted ever again.
Thank you all for your continued support and great advice xx


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
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This is part of what is wrong with the whole system, thanks for telling a first hand account of what many have to deal with when we are turned down for many insurance issues from treatments that our doctors wish to do to simple Rx drugs. As long as profit motives and results for stockholders are the primary concern of insurance companies, we are at their mercy. The US is the only first world country that does not have government subsidized healthcare, and the many many lobbyists of the insurance industry are not going to let that change easily.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Kerri,

Great post! I have not seen this issued discussed on the OCF forum before, so Iím glad you brought it up.

You situation sounds very similar to what I went through. I was employed as a business analyst for over 20 years when I was diagnosed with oral cancer in 2005. I had a recurrence in 2010. I was treated with RT in 2006, had 4 surgeries between 2005 and 2011, and had many complications. I worked part-time during part of my treatment, would return to work between treatments, but then additional treatment would require that I go out on medical leave again. This continued for many years until 2012 when I went out on long-term disability.

I applied for SSDI and was rejected the first time. I was also told it was typical to be rejected at the first two steps in the process, so I was very surprised that I received the favorable decision from SSA at step 2.

I had LTD coverage through my employer and that company has a reputation for rejecting claims. After receiving benefits from them for about a year, they denied my claim. I appealed and was denied again. I then hired a lawyer, and won the second appeal. After I won the second appeal, they sent me to one of their doctors for a physical (this was about a year ago). Iím assuming that doctor agreed with my doctors as they continued to pay me my monthly LTD benefit.

My last 3 surgeries were post RT and because of a recurrence. Needless to say this was very stressful and recovery took a lot longer. I did not return to work for a number of months after surgery #4 and I soon realized that was a big mistake. I struggled to work full time (40 hours per week), and quickly used up my remaining sick and vacation time. After a few months and with my doctorsí recommendation, I applied for medical leave again. This took a few weeks to be approved. I had hoped to return to work again after a few more months of rest, but this is when I went out on long-term disability.

I am very grateful to still be alive even with all the on-going medical issues, but it is frustrating and stressful to have to battle with insurance companies after the battle weíve already been through.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2021
Joined: Nov 2006
Posts: 2,671
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Adding my thanks for your excellent post, Kerri. It is no picnic dealing with SSDI.
In my own and my son's experience with SSDI, after several appointments lasting several hours, and after all medical forms and doctor's rewritten recommendation that my son would be disabled for at least a year, he was turned down. He was in such a depressive state, weak, could barely walk into the SS office, he did not have the desire nor the strength to go on. At one point in one of our many interviews, with both of us there, the interviewer looked at me and asked,"Is he terminal?" Not too happy with SSDI. I applaud the extreme persistence and courage of those who have the wherewithal to get results.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Kerri Offline OP
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Thank you, dear friends.

I apologize for not replying to each individual post, but I truly thank you for sharing your own experience. Unfortunately, this is a very disheartening topic that has caused me more anxiety than usual. I have read all of your posts, keeping your experiences in mind, and I will respond with an update as time comes.

I have an appointment with a separate attorney to possibly handle my LTD claim. I have an appointment on November 13th. I didn't want to wait that long, but the attorney will be out of the office this coming week for a conference and then she will be in court as soon as she returns. The good luck in all of this is that the attorney used to be a physical therapist, like me, which should help tremendously in that she will know exactly what my job entails. Since I haven't yet met with her, I haven't signed on for her services, but she came highly recommended by my SSDI attorney and I trust him thoroughly, as he also came highly recommended from some law enforcement professionals that I know.

On Thursday, I got a call from the field claims rep wanting to set up a time to come meet me at my home so he could "answer any questions that I might have" and "so he could could get to know me". Since I've done some research on the topic of theses meetings, I know what his ulterior motive. I didn't answer the call because I didn't recognize the number and I had been anticipating his call. He asked me to get back to him on this past Friday, but I did not return his call, as advised by the paralegal that I spoke with to at the new law office.

As soon as I checked that message, I became very anxious and I was wondering how in the world would I be able to but his man off for over two week prior to my meeting with the attorney. I called the office and wasn't able to speak with the same paralegal (who seemed very competent), but I only got to speak to a woman who seemed by have English as her second language and it was somewhat difficult to understand her. The office is near Worcester, MA, which has a higher number of Hispanic residents. My questions to her where "What should I say to him when he calls back?" and "I am concerned that if I continue to evade his calls that it might create a problem for me in that I might seem uncooperative or hostile." She wasn't too helpful in this respect secondary to the language barrier and that fact that I think she was just answering the phones as a receptionist, rather than being a paralegal. The first one told me not to say that I was being represented and to avoid the phone calls until I could meet with them. All of this is extremely uncomfortable for me, to say the least.

This made me think of what I might be able to say to put off the visit for as long as possible. I welcome any of your input or ideas. These reasons are the truth, but I have to be sure not to give into his "friendliness" and give away too much information on the phone.

1) "I suffer from anxiety and depression and I would feel more comfortable with someone else present during our visit."

2) "I will need to arrange for child care, which include seeing my daughter getting on the bus in the morning and meeting her at the bus after school. Having someone else drive her is difficult because she is still in a car seat, as is Tristan, and the car seats aren't all that easy to transfer from one car to another. Not to mention that it's difficult to get anyone to help out in the middle of the day. My mother lives 35 minutes aways and she is still recovering from major abdominal surgery earlier this Fall. I would need someone to drive Tristan to pre-K at 11:45 AM and pick him up at 2:30 PM. There is no way the kids can be in the house during the meeting because there would be too much disruption. I would also have to potentially pay a babysitter $10-$15/hour to watch them (outside our small home) and transport them.

3) I have difficulty with short term memory and the memory during treatment and immediately post my treatment (when I was hospitalized several times for treatment complications to include neutropenia, dehydration, MRSA infection, feeding tube problems, fevers, vomiting, infected chemo port, infected PICC line, etc.) I think that I mentally blocked this time period out as a means of some degree of PTSD or just that I was so sick I didn't remember.

4) I also have word-finding difficulties and may not tell all of the facts/circumstances surrounding my disabilities. My husband is a good source of information as he was my primary caregiver and my mother, as well.

I don't know what else to comment on at this point. This post was far longer than I anticipated. I truly appreciate all of your posts. I am deeply sorry for all of the suffering that you and your loved ones have endured. It's not enough that the cancer assaulted and battered us, but then we have to go through all of these hoops, all the while losing money by lost wages, draining savings and investment accounts, losing houses, and so many other horror stories.

But then, I have seen pictures my Uncle Dana go deer hunting and sling a deer over his shoulder then strap it to the hood of his truck all by himself (when he has been on disability for low back pain for decades). He also had two beautiful Harley Davidson motorcycles in his basement. He was married to my dear Aunt Janice for years while she worked as a letter carrier and juggled 2 other part time jobs delivering pizzas and working at Bed, Bath, and Beyond so that their two sons could play hockey all through school. Yes, she should have dumped him a long time ago, but she is deeply Catholic. Once the boys were out of the house, she divorced him...and guess what? He gets to collect half of her pension from the post office when she retires. Just one of the maddening stories that we hear of malingerers getting away with everything for years, now making it nearly impossible for the ones that need it most to get the help that they need.


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Jan 2006
Posts: 756
Likes: 1
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Kerri,

Keep your response to the claims rep short, honest, and apologetic - "I'm sorry, but at the advice of my attorney I cannot met with until after Nov 13, which is when I have my initial appointment with my attorney". Don't provide any more information until after you talk to your attorney.

Is your husband able to be home the day of the home visit? Probably would be a good idea.

In the mean time, make a chronological list of all you have been through since diagnosis. I did this which I called my OC journey. I listed dates, diagnosis, treatment, doctors, and all the side effects and issues I am having. Share this with your attorney and ask if OK to give to the claims rep. They may not want you to give the claims rep a copy, but it is a good document for you to have so you don't forget any of the issues you are having, and keep it updated.

Wishing you the best!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2021
Joined: Nov 2006
Posts: 2,671
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Kerri Ė
You have been through so much, and I so feel for you and your SSDI and Met Life experiences. But Susan has given you some great ideas above. Making lists helps to remember stuff and sort of releases them from your mind so you donít keep going over and over them and getting stressed out. And you have also done some good things in getting that good highly recommended attorney plus the colleagues he recommended. Good idea if your husband could be at home but if thatís not possible, why not just keep the children with you at home for the day? Itís ok if they get disruptive Ė it may even be an advantage if they do, and a help to you in convincing the claims person you need them to settle in your favor. You might just casually and sweetly mention you couldnít afford to hire a driver or babysitter.

Keep that list handy that Susan told you about and check it out with your attorney to make sure itís ok. That way if your children need your attention, you can just hand the list over to the claims person. And you donít have to answer anything not on the list.

Now about your Aunt Janice Ė good for her for finally getting the divorce! I can certainly sympathize. I was married for 20 years to an abusive alcoholic all because I was a ďgood CatholicĒ. Stuff happens Ė itís better not to dwell too long on the negative or whatís in the past. It robs you of time for all the good things that can happen. And I think good things are bound to happen for you, Kerri. Keep us updated.

Last edited by Anne-Marie; 11-04-2015 04:34 PM. Reason: typo

Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Kerri Offline OP
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Thank you, Ann-Marie and Susan.

I admit, I am in a negative place right now because these types of things overwhelm me. I am always grateful that I am not here writing about a recurrence. Sometimes, it's just hard not to feel the anger over the loss that cancer has placed in our lives.

I know that I have a lot for which to be grateful, still, and that things could be far worse, I'm just feeling some of the grief come back as I face these challenges. I have battled with depression and anxiety my entire life and cancer has just cranked everything into overdrive. I am doing all of the things I am supposed to to do...go to my psychiatrist, see my counselor, take my meds, but the facts are that I don't even want to get out of bed and face each day. I find doing every day things to take care of myself are taxing...taking a shower, making myself presentable, leaving my house, seeing my friends. Then comes the guilt because I am not being the mother that my kids deserve, and I'm not the wife that I used to be. It's hard to admit all of this and I know that I'm all over the place. I just hate all of it. I don't want anyone to worry about me doing something to hurt myself. I would never do that. I want to live more than anything...I just want my old life back or for my new life to be better, for me to be better. I'm hanging on but it's up to me to get better...it's just so damn hard.

Of course, this is not how I planned my life to be. None of us has.

I am grateful for your kind words, advice, and ongoing support.

Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Nov 2009
Posts: 644
"OCF Down Under, Kiwi"
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I hear you, Kerri. It really does suck. You are young and this shouldn't be happening to you. I wish there was an easy answer to the depression. Have you got a local support group?

We have a different system in New Zealand but we still have battles with bureaucracy which are hard to deal with when cancer has already stretched the coping skills to almost breaking point.

I hope writing here has released some of the pressure. In my darkest hours I've come on this site and felt some relief just by describing how I feel.

Wishing you well.



1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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