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My mom diagnosed June 25 2014

sandra14's picture
sandra14
Posts: 9
Joined: Jun 2014

So I'm Sand and I'm 38. I will be 39 in July 2014. I have been looking for work for more than 2 years and I have had job interviews each week in the month of June. I was on such a freaking high.  Feels great to have so many job interviews! I have another one June 27th.  

But my mom had a biospy on June 11th. And we got the results today. My high is over. I'm now very sad. My mom is 61 years old, not overweight (she is underweight, always been underweight) and she only had one kid - me.  I live with my mother and my mom wants me to stay "up" for her. She says I can't be down. My mom is on County insurance - um wait. It is state insurance. It is called Medi-cal. 

I'm in complete shock and I feel like crying until my eyes fall out and I have no clue how I'm going to do this job (if I'm offered this job) if my mom needs to see an oncoloigst. I mean, she WILL need to see one. She WILL need surgery since she was told she'd need surgery. I will need to take time off of work to help her get home after surger. I will need to go with her to her oncology appointment.  When that is, I have no clue.

We were told we may need to wait weeks to see the onocolgist. There is ONLY ONE oncologist for the entire County clinic. The waiting is the worst for this Medi-cal IEHP.   I'm scared that my mom's cancer will spread. She needs a CT scan of her chest and pelvis since that will show if it spread.  

So what do I do now? Cry? Stare at the white walls? What do I do? I feel like I can't even live my own life. My joy has been zapped away. I feel like a shell of a person. 

I'm lost and I don't know how I'm going to do on my job interview on June 27th and I need to nail this job interview since I want this job really bad.

I'm so lost. 

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

First, slow down and breath!  You cannot tackle all of this tonight.  Listen to your mother.  I am so sorry about her diagnosis, but this is early days.  These are the boards that help you with whatever you need.  To talk, to suggest, to  direct,to educate, to give you a {cyber} hug.  Go to your interview.  At this point it is JUST an interview.  You will need to be with your mother to ask the questions and to WRITE the answers down.  Get copies of EVERYTHING even her meds. There will be reports, x-rays, cd's of scans.  Get it all.  They can send a copy to your mothers doctors if they want, but YOU need a copy for yourself. Try to get an earier appointment, like get  a cancellation list.  In the mean time, try to find another doctor somewhere.  Do you know the type of cancer your mother has? It could make a difference, some are very slow growing.  We {try!} to excell in patience here.  We have been taught the hard way.  Thats where all the boards come in.  You are NEVER alone.  Ask anything you want, nothing is out of bounds.  Someone whii know how to help.  Just let us know!  Best, Debrajo

sandra14's picture
sandra14
Posts: 9
Joined: Jun 2014

My mom has unterine cancer and she had a regular biopsy done by a gyo doctor. She was told she needs surgery from him, but of course she has yet to see the oncologist. 

I'm lost as to one thing that you said. 1. I'm not employed right now. I also do NOT get unemployment. So that means I have about $70 - $100 in income a month. Sometimes it goes up to $150 a month if I'm lucky since this 1099 gig . . .it is all independent contractor and it is all on-call and of course, I'm not the only presenter.

And for the month of June - I have 0 income since this 1099 thing I'm doing - they always say in June they are out of funding. So that means I don't get that $70 coming in the month of July. Now, I'm sure you know that no one can live on $100 a month. Most of that money I earn goes for gas money. 

This is what I just don't understand.

You want ME to get copies of everything? Um, they cost money. I don't think they are going to give me (free) her CD's and her x-rays. If I ask for them, I know they will charge me for reports. I've asked for my OWN reports and they always say that it cost 25 cents for each page.

Each page? I'm sure her report may be 25 pages in another 2 months.  I had to pay about $6 for my own records about a year ago . . .and $6 is a boat load of money when your income is only $100 a month.   (6%. . .think of someone earning $1K a month and someone told them they have to pay $60 dollars for something.  $60 is a lot of money. $60 is a cable plan, $60 doesn't even cover our electric bill each month. 

So I'm really really really not happy with someone telling me to go out and spend money to get my mom's reports (for myself) when I'm strapped for cash.  And my mom? She is on survivor benefits and her income is fixed each month at less than $1,200 a month and all of it goes out on all of her bills. I'm not sure how she is going to afford getting to all of these appointments coming up in the next few months.    I'm just so tired of people asking me to spend money that I don't have. It's not cool for people to tell me that. Like I have a money tree? The only way to get more money is to work for it.

 

This is why I need this job. If I don't get this job, I will not be able to help my mom out with the cost of getting back and forth to her appoitments. I have no idea if I should tell them or keep my mouth shut. I mean, sure I can keep my mouth shut. And then the 2nd interview. . .(I know they do two interiews for each position since I was told before on another interview I had for another city).  I can just see it now. June 25th 1st interview. July 9th, 2nd interview.  They may want me to start around July 30th.  I can't start that day. And on top of that, by July 30th, we are hoping (what else can we do? pray to something we don't believe in?)  that by July 30th she can see the oncologist. 

It is 4:32 am and my CPAP machine woke me up just before 4am. So I"m up an hour early. Ugh. Now I need to wait until 8am so I can call all of these doctors that I found through the Foundations for Women's Cancer.  

So I guess I asked my question of why I personally would need all of my mom's records. Can't she just get the copies herself and pay for them herself? (Huh, she doesn't have extra money to pay for copies of reports. Social Security payments do not go up just cuz you need an extra $20 for copies for medical records. 

Hybridspirits's picture
Hybridspirits
Posts: 209
Joined: Nov 2012

i am sorry to hear about your mom.  I was diagnosed at age 54 and my daughter was 25 and it wasn't easy but she got through it.  a few questions,  you said she had a biopsy?  what kind,  in the gyno office, a D&C, is there a pathology reprot that you can get a hold of to see what it says.

things don't move fast even in other medical organizations.    mine took monhts to get through the D&C, then an appt with a gyno/conologist to plan the surgery, than the results had to go to a tumor board and then treatment.  While the waiting is awful i am not sure it is totally different.

a few hints for you given all on your plate.  I was in a situation where i work full time,  my husband is without work and I needed to make sure I could keep everything going.  What i found key was organization,  the more organized you are the less time it takes.  You might even be able to organize your mom so she can start collecting information from Dr's and keeping it for the both of you to review.  You will want a binder to hold,  all blood tests, all pathology reports, all CT scan reports everything and anything.  I also got a notebook and brought it to each appt and wrote my notes by date, i still use that.

as far as treatment there are resources that can help you and your mom,  try your local cancer society.  there are volunteers to drivve to and from treatment.

now your employers.  My daughter was out in Seattle and wanted to come home closer before my diagnosis and was going through the same with interviews.  She was honest with her prospective employoers about her family situation.  She figure, and rightfully so that family comes first and if her new employer didn't think that it might not be a good match. 

I agree,  once you get some more details on the pathology,  what are the next spcific steps we can all chime in.

i too have learned that we need to take this step by step as I personally wanted the solution to be well thought out and not rushed.

take care and your mom is lucky to have such a caring daughter.

hugs and let me know what details  you find out

Sharon

 

 

sandra14's picture
sandra14
Posts: 9
Joined: Jun 2014

i was told it was not a cone biospy.  So what else is there ? I was not in the office with her when the thing was done. I was outside the office. I didn't ask what kind of biospy was done. I asked if it was a cone biopsy and I was told from someone "I don't think so".  Again, we go to a county hospital so some of the staff  - they either don't know - or they don't bother to ask the other staff hard questions such as "What kind of bisopy is dr so and so doing on bla bla bla?" 

 

It was in gyno office. No D and C. If needed, we have no clue yet. We have no clue what we need.  A pathology report? Sure.   We can get that. FOR MONEY.

Sure my mom can pay for it out of her Social Security fixed income - the one income she has that pays all of her bills and she has no money left over for anything else. That one?  Sure, we can do that and we can just go without driving for an entire week since I we put in at least $15 of gas (A WEEK) into the car.  did you know that gas is about $4 a gallon in Souther Cali and did you know that $15 a week in gas is NOTHING?  I mean, it only get your car about oh - 90 miles. I put $10 a week into the car as well for an extra 25 miles out of the car. So that is what? about 115 miles the car will go since the car gets about 25 miles per gallong (we don't have a new car, it is a 1999).  And how many miles do I drive the car each week on average? Between 80 (low driving) and up to 150 miles in a high week.  Those high weeks, we got to cut something else out of our budget since we don't get extra money.  If I get extra, I must work for it. I mean, we could always walk to her doctor appoitments which is 10 miles away. Sure, we can do that. 

I'm sorry to be so crude sounding but I'm tired of people asking me to spend money that I don't have. it gets really really old really really fast. My mom does not have any friends to ask for money. I certianly don't know anyone that can give me money.  Guess I'll have to go out and pan handle now.

 

God, you are asking my mom to spend money she doesn't have. What is it with people today assumig that you have extra money laying around? I don't get it. If we cancel our FioS bundle, we would be hit with a freaking $200 cancelation fee. I don't think my mom wants that fee. She can't afford it. 

 

I don't know if I want to log into anything more since people are telling me to spend money I don't have. I mean, unless this is a sign that I WILL get this job and then - well of course - once I get my 1st pay check - I will have money.  I'll have a lot of money and I'll be able to pay for all kinds of reports and CD's and whatever patholgy report. But I got to wait until that 1st paycheck.  So, may be both of you are trying to tell me that I have nothing to fear and I will land this job. I mean, if I think I'll get the job - then I probably will. 

Hybridspirits's picture
Hybridspirits
Posts: 209
Joined: Nov 2012

i have met other cancer survivors locally that have reached out to their chuch,  the cancer society and evern hospitals for monetary help and it has worked.  Maybe others can chime in with other ideas

sandra14's picture
sandra14
Posts: 9
Joined: Jun 2014

So you are assuming that we go to church huh? Sure.  I don't believe in any god or gods. My mom does believe in a generic god, but my mom does not go to church.  That was a real nice answer to my quesiton. Why don't you first think that some people - don't go to church? Please. Church. Right. 

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

You really need to try and calm down. It won't help your mother to be frantic-- she needs you to be calm and have hope. 

Doctors will provide you with copies if she asks-- you don't have to pay for copies of your medical records.

If she's on Social Security she's on Medicare-- right? Research her coverage and see if there are options to apply for extra help-- I think there may be.

Otherwise-- let the medical bills go for now-- be there to support her and not fretting about money. Money will work itself out or it won't-- Cancer sucks financially-- I suspect we all (I DO) have bills that are being paid VERY VERY slowly or not at all yet. The main thing for you to worry about is supporting her emotionally and helping her to not fret. It does no good. If fretting did any good we'd all be healthy and RICH :).

Good luck.

 

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

Oh, I forgot, I wanted to add-- when I was first diagnosed, before my hysterectomy, they thought that might be all I'd need. If it was staged right and the surgery went right, I'd need no chemo and radiation. And let me tell you-- that would have been amazingly simple and easy-- the surgery was a piece of cake. Depending on her staging, etc-- when they know all that-- that might be an option-- you never know. And even though I had to have chemo and radiation, it went very smoothly. So hope for the best! You just never know. 

sandra14's picture
sandra14
Posts: 9
Joined: Jun 2014

I guess we will not know the stage she is in  - until????? I have no clue. We asked (well, I asked) the OB GYN what state and she said "I don't know".  What? What does that mean, "I don't know" 

I have questions and I don't know of any answers. I guess I I could print these questions out and I guess I can wait 4 to 6 weeks.  That is how long we may need to wait to see some Oncologist.  4 to 6 weeks before she see's one.  Is that normal to wait that long for the 1st appointment with an oncologist?

 

Will my mom know the stage when she gets her 1st appointment with the oncologist?

Will she have to wait until she gets the CT scan before she knows the stage?

Will see need some other type of exam or blood test or something - before she knows the stage?

Will we need to wait 3 or 4 months before she has surgery?

Could it spread to her rectum in 3 or 4 months?

Why is this process so differnt for everyone?

Why do I have so many questions?

Why do I feel angry?

I have a friend that told me she waited an entire YEAR before she was able to see an oncologist. A year. She kept on calling and calling and going down to the medical center to ask about the referral.  She went at least once a week.  They kept on saying "It is there, it is there".  But she didn't get to see an onocoligst until 1 year after the diagosnis.

Is that normal? To wait that long? She was pissed and I think she sued the medical team or the insurance or hospital. She was a nurse too so she knew how fast her cancer could grow. I really hope that doesn't happen to my mom. A year is just too long to wait. 

 

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

I didn't know my stage until after my hysterectomy and I didn't have a CT scan until after chemo (WAY after initial diagnosis).

The Gyn wouldn't know her stage yet. I would think it's a little bit of a good sign that they didn't rush her over for scans or a D&C or something.

I don't know why the process is different. I'd LIKE to think that each doctor does when she/he thinks is best for each particular patient.

You feel angry because the rug has been pulled out from under you, but I promise-- people with less going for them-- people without such a passionate daughter :)-- get through this.

I hope hope hope that you run into a great doctor who will put you and your mother at ease. 

 

 

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

BTW-- When I said "if it was staged right" I didn't mean "if the doctor's had staged it correctly." What I meant was-- if my cancer were the right stage-- like a stage 1-- then maybe all I'd need was surgery. Since it turned out to be stage III-- I needed much more.

Reading back over this I saw that that was confusing.

sandra14's picture
sandra14
Posts: 9
Joined: Jun 2014

Medicare is for people that are 65 or 66 or older. My mom is 61, not 65 or 66. She has Medi-CAL.  That is California's version of Medi-caid.  We will ask for medical records. She is on Survior Benefits from Social Security sine her husband passed in 2004. If she went on her on work record, she would have gotten less from Social Security so she wanted to get survivor benefits. 

 

This kinda sucks since Medi-CAL is a LOAN after the age of 55. All things must be paid for after the age of 55 - I mean, once the person dies, they come after the house and if the house is left to the children, guess what?

My mom is 61. She just got on Medi-CAL in 2014 due to the Affortable Care Act.  Before that, we had MISP. (County insurance for poor people, it was worse than Medi-CAL). We don't pay out of pocket now - but my mom will have to pay out of pocket later. If she doesn't have to pay (meaning if she dies) I will be the one paying out of pocket to return the loan payment of any medical care she got. 

Fayard's picture
Fayard
Posts: 438
Joined: May 2011





 

I agree with Nempark, you have to stop!

 

You are very negative. If you think you are having a hard time, imagine how your mother is feeling. Instead of writing here, why don't you do some research online on the different types of uterine cancers, as well as financial support from different entities as someone else has already suggested.

 

All I have read in your posts so far is complaints about not having money. Yes, getting sick is a financial burden; however, complaining about it does not help at all.

 

I hope your mother is not reading or listening to any of these.

 



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nempark
Posts: 683
Joined: Apr 2010

We all get angry and very sad at these unfortunate times, but please do not get mad at the women on this site that take precious time to comfort and advise you. 

Maybe if you put some faith in God and stop talking about a generic god (the devil) you will be able to focus and ask the Real God to give you wisdom and endurance to cope with your mom's illness.

 

sandra14's picture
sandra14
Posts: 9
Joined: Jun 2014

I never said my mom belieeves that a generic god is the devil. Please do not put words in my mouth. My mom considers herself a christian woman but - she doesn't believe jesus is the only way to heaven.  She prays, I think. I don't know really.  When I said she believes in a generic god, I mean she says "I believe in god" and then she says "I don't know about jesus".  When did I say that my mom calls her god "The devil".?   I have no idea if my mom believes in the devil.  My mom does not go to church, does not read a bible, but I think she prays.  It is personal to her. But going out and saying that I said the a generic god is the devil is - out there. 

I never said anything like that. I'm sorry you misunderstood me. Just because my mom and I do not go to church does not mean we worship the devil. The devil is a Christian concept. I am not a christian. To you god is one thing - to others - god may be a tree, the moon or a baby.  Not everyone's god is the same.  

 

I'm sorry I upset you so much. Perhaps I came off wrong when I said "I do not go to church".  The way I delivered it was probably too forward. But please do accept that not everyone will accept your own personal idea of what "god" is nempark.  If your god works for you nempark, that is great. 

CSN_Rowan's picture
CSN_Rowan
Posts: 88
Joined: Nov 2013

Hello all,

I wanted to remind the board that the terms and conditions of CSN prohibit religious proselytizing or putting religious pressure of any sort on another member. To further clarify, using religious language in a post is fine as long as you are expressing only your own beliefs and avoid denigrating the religious preferences of others. Thank you for respecting these rules.

Rowan 

CSN Support Team

vallegirl
Posts: 1
Joined: Jun 2014

Hi Sandra, I know how scared you are. I am 58 and have gone through what you mother is and all I can tell you is try to keep a clear head don't panic. You need to be with your mother at every appt if you can, you need to take plenty of notes. I tell you if I didn't have my baby girl with me I wouldn't have known what was told to me, I was in such a mind haze I was only doing what I was told for my treatments. I felt like I was in a movie just watching what was going on. But all I can tell you is be very supportive of her, cause I know how I was dealling with it all like a zombie. Sending you and your mother prayers, and hugs.

sandra14's picture
sandra14
Posts: 9
Joined: Jun 2014

Well, now all I can do is wait until Friday or MOnday. that is when the referral wll go in. 

Double Whammy's picture
Double Whammy
Posts: 2831
Joined: Jun 2010

Her doc should be able to tell her what type of cancer the cells from the biopsy looked like (i.e., adenocarcinoma, papillary serous, carcinosarcoma, etc.) and also the grade of the cells (1-3) in the biopsy.  Remember the report is only on the cells sampled, she still has a uterus with more cells.  Hospitals and doctors know how to work with patients on Medi-Cal, so please let's not worry about the cost - yet.  The medical folks will work with you.   It was about 3 months from my biopsy diagnosis until my surgery and although I was beside myself with worry, those in the know (i.e., the doctor) didn't seem to be.  

You will get more information as time moves forward.  At this point it doesn't sound like you really know anything specific.  You could, however, ask your mom to get a copy of her pathology report from her biopsy and see what it says - or ask her to call her doc and have the doc explain the pathology to her.    You can also do this when she gets an appointment with gyn oncologist.  It's all they know at this point and IMHO, not knowing everything and having to wait is the worst part.  There's just no getting around it.  If you feel it is taking too much time, become a pest and call the gyn office often and ask them to expedite the referral.  They may have been trying to be reassuring by letting you know the referral was going to take some time.   My gynecologist told me after she told me of my biopsy results that was important but not urgent (in my case).  I tried to remember those words as the time went on and on for what seemed like forever (in hindsight it wasn't).

A cancer diagnosis is awful under any circumstances but not all cancer diagnoses are equal.   I love your avatar - its words are applicable to this situation.  Good luck to you and you mom. 

Suzanne

sandra14's picture
sandra14
Posts: 9
Joined: Jun 2014

Well it seems that I have cooled my jets somewhat. I had the job interview this morning which was stressful. It put me in the now and I wasn't thinking about my mother. 

When I was done I called the medical center and found out that I need to contact medical records to get the pathology report. Then I was told that they do charge for copies. The the lady found out my mom is a cancer patient and medical records does  not charge cancer patients. 

Then I went to the women's clinic. . .and the referral to be send to IEHP - has not been sent yet .  Why?

The person that sends them - is on vacation and she is out for 3 weeks! I was told that the county medical cancer is getting an assistant to the ONE oncologist. I was told that the medical center will be getting all new doctors starting July 15th, although they don't know when the new doctors will start in oncology.  And another thing- instead of sending in the students first (to assess the patient) they will be sending in the big attending doctor first - and then the student follows since it would take too long for the patients to see thier doctors. (The doctors and staff realized after 15 - 20 years that their system was not working so after 15 years, they finally decided to change it up).  

Then I was told to call IEHP back on Thursday to see if the referral came in. Then I was told to call the women's clinic to see if they sent it in if IEHP didn't get it.  (And it does take 3 days for the approval to go through once IEHP gets the referral. I'm guessing all in all, it takes 10 days).  Ugh.   I'm not sure which one is more stressful - the job interview I had today  or if I get this job (It is high stress I was told, lots of driving around) or if just waiting for the 1st oncologist appointment is more stressful.  . . .we were told we would be called once the medical file is in the medical records office - since we will need to go down and make copies.    Ugh

Waiting is not that bad as I thought (at least for now since it has only been 2 days). I have a feeling if I get this job, I may be stressed out over work and not my mother. either way, I won't know anything. . .they'd need to call me for a 2nd interview and that could be - who knows when. Can't think of that.  We got a truck to fix, a car to fix, and a mom to fix. 

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

Sandra,

I am self-employed and I was diagnosed in June, 2013, had surgery in July, 2013 and started chemo. in August, 2013.  When I had my hysterectomy, I had to stop work and didn't work until April of this year.  I am a massage therapist.  I am fortunate that I had insurance but had a very high deductible that I couldn't pay.  My treatment was at a University Hospital (a teaching hospital).  I filled out an application and was able to have 100% discount since I wasn't working.  In my hometown, the medical facility had what was called "Charity care".    Every hospital has this according to my doctor.  So, that is something to check.  Not sure how California does things.  Hoping there is a teaching hospital around your area.

Another resource is a Gilda's club or the American Cancer Society.  They can guide you to resources in your area.

I was blessed with friends and family and a church who sent me checks to keep my household running.  Like the other women have said, the medical bills can wait especially if you tell them up front that income is limited.   There are so many types of cancer, mine happened to be a very aggressive kind and it was rare.  My ob/gyn oncologist wanted to get it taken care of right away because it is aggressive.

The other suggestion is have one of your relatives or friends or acquaintances put on a benefit.  A friend of mine was going to that for me and one of my clients has a husband with cancer and one of their friends put on a benefit for him.  It was a big success.

I wish you and your mom well.  I will pray for the both of you.   Stay calm, this board has your best interests in mind.  They throw out suggestions and comments with the best intent.  I've never met anyone who has been disrespectful on this board.  Only concern and love.  We are all scared and freaked out and have gone through the more questions than answers at some point in our journey.  I rely on this board to help answer those questions or gives me questions to ask the doctors.

Take care.  I hope you get the job that you want.  Self-employment is hard sometimes.

Jeanette

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