Mom is in excruciating pain

wanttofeelgood

PET CT report

Thanks, Katheryn and Moxie.  I will pray for both of you too.

We don't know how long Mom will be in the "transitiional care" hospital.  Will they kick her out abruptly too?  We don't know.  She had a better day yesterday but is still in 24/7 BURNING EXCRUCIATING PAIN.  The doctor is giving her 15 mg morphine and Tylenol, gabapentin, Colace, etc.  Sometimes the morphine helps a little with her pain, sometimes not at all.  We talked for hours on the phone yesterday before and after my closing shift.  There was some blood in her stool.  She bleeds from her privates, probably from the fistula.

I need to share that I'm studying my Mom's PET CT report more, starting online research of words used in the report.  I wish I had asked for it two months ago (she got it in April).  I know I need doctors, etc. to help us navigate this.  Mom doesn't have a primary care physician, GYN, etc.  So far I'm understanding that Mom has cancer of the anus and rectum (intense hypermetabolism and wall thickening), the type of cancer, I beiieve it originated in her anus, it may have/probably invaded the fat surrounding her anus and rectum, she has a suspected rectovaginal fistula, she may or may not have anterior perianal fluid that can't be clearly seen on the PET CT (I didn't look that up yet so I don't know what that means), she has nonspecific 1 cm bilateral inguinal lymph nodes with only low-grade uptake that may be inflammatory and they cannot rule out metastasis (she told me she has pain in her groin), focal hypermetabolism within central aspect of her uterus (she's not on hormone replacement therapy for quite a while so not considered normal-they recommend pelvic ultrasound or MRI), activity along right frontal scalp that may be inflammatory (correlate with physical examination).

I shared with Mom obviously (she wanted report, her life, she's still in a hospital).  She's terrified it might have migrated to her brain.  I'm terrified/heartbroken that it might be too late to save Mom.  Doctors at hospital #2 don't rule out metastasis but say they want to treat her with CURATIVE intent.  I hope they don't want to put her through radiation/chemo hell just to get their paychecks from Medicaid when they already know it's too late to save Mom.  I'm devastated it might be too late.  I need to do more research.

Be back later.  Off to work all day,,,

tanda

wanttofeelgood

I don't know if your mother is on Medicare, or if Medicaid and other insurers have similiar policies, BUT there is a protocol to appeal a discharge if the patient is not ready to be discharged .Your description of the problems she is having in managing the colostomy bag might be a reason to extend a stay.

I can't attach docs to this listserv, but if you click on these url's they should open.  It sounds complicated, but hospitals should have given you a copy

https://www.cms.gov/Medicare/Medicare-General-Information/BNI/HospitalDischargeAppealNotices.html

    scroll to the downloads and the full document will open

By the way, where are you located?  Is the "transitional" hospital" related to the first hospital? 

Try to make contact with the hospital social worker and the American Cancer Society to see about resources in your community (ie transportation for patient and maybe caregivers, meals on wheels, other kinds of supports and services)

I'm, so sorry that in addition to your concern about your mother you are also having to deal with this bureaucratic nightmare.

 

wanttofeelgood

I'm so sad and so tired

Thank you, tanda.  Mom is on Medicaid, not Medicare.  I don't know if the transitional hospital is related to the hospital where she had the colostomy.  I'd rather not publicly say where I'm located.  I am in contact with some caregiver group that I found out about from a call to the ACS but it's a drawn out thing where I have to schedule a meeting with them for them to maybe do anything to help me.

I visited Mom in the transitional hospital for the first time tonight.  It's for financially poor people like us.  We begged the case worker from the colostomy hospital to put Mom in a place near home because we don't have a lot of money and I essentially don't have a car and work the two retail jobs but Medicaid wouldn't cover anything near us.  Colostomy hospital of course abruptly discharged her and stuck her here without really asking us where Mom wanted to go, not that we have a lot of options with no money.  In a STRICTLY medical way, Mom asked me to look at the tumor growing on her inner butt cheek.  I started crying hysterically.  It looks terrible.  I didn't have the heart to tell my Mommy this, but the reason I keep crying about this and why it's so triggering for me is because it looks exactly like the mast cell tumors that were all over our dog's body a decade ago.  Our dog essentially died of cancer (she stopped eating and was in excruciating pain and depressed, so we made the decision to put her down).

They wait until late at night to load up Mom on the meds she needs to have a little less excruciating pain.  Then she gets really chatty.  Then I see shades of my real Mommy.  Then she keeps me up half the night talking when I really need to sleep/get a ride home in the middle of the night.  But I already feel my Mommy fading away.  She's too young.  No one can help us. I don't think.  People just want their money/tell us what they think we want to hear.  

She wants to see an OBGYN for an ultrasound of her uterus.  The cancer might have spread to her uterus.  The cancer might have grown into her inner butt cheeks.  The cancer might be in her pelvic lymph nodes.  Of course, the oncologist's assistant didn't tell us this when Mom got the ultrasound in April.  They kept the results to themselves because Mom wouldn't make a followup appointment at the time. 

Mom keeps saying that if it wasn't for me and the dogs, she would pray to die.  She says she has no quality of life.  She keeps telling people this and no one seems to care.  Nothing gets better.

I have to pretend to be happy in customer service in order to pay our bills.  I'm uncomfortable.  I feel stuck.  I'm crying as I write this.  My old life wasn't perfect but I would give anything to have it back.  I feel like my Mommy will be dead soon.  I want to have hope but it feels hopeless.  I have no family.  I have no friends.  I'm afraid I'm gonna be homeless (long story; I'm not getting into it).  The dogs are major emotional comfort but there's only so much they can do.  I have no money.  Every time I try to do pretty much anything these days, it's usually a struggle, including things that shouldn't be a struggle.  I have no energy.  I'm so lonely.  I need talk therapy BADLY.  I really need to formulate a game plan here.  Naturally when I'm finally ready for therapy, I have no money.  The universe couldn't have picked a worse time for this.

Mom got a voicemail from some anathestia (sp?) group tonight.  She keeps getting bills from her hospital stay in March.  The person who fast-tracked my Mom's Medicaid said the Medicaid would be retroactive to her hospital stay and would cover everything but she keeps getting bills and now she's getting a threatening voicemail.  I'm afraid to keep opening the bills so I stopped.  I can barely cover the water and electric bills, her meds, transportation, food.  She can't afford this.  And if she dies, I'll get stuck with these bills.  I wonder if we're going to get more bills we can't pay from her latest hospitalizations.  I thought Medicaid covered everything.  Did the Medicaid person at the first hospital lie to us?

Why is this happening to us?  We're not perfect but we're good people.  Of course, nobody deserves this.  I hate my life.  I feel like I'm going to lose my Mommy, my only person in the world, to a preventable, curable cancer.  I already feel like I'm losing her.  I need help but every time I try to get help it drags on endlessly and nothing ever changes for the better.   Work takes forever for very little money.  Transportation takes forever and/or is very expensive.  I always have to be go, go, go.  I never have a chance to explore my feelings and figure our what I really want and need.  Everything drags.  I want my Mommy back but she might be already gone.

eihtak

wanttofeelgood said:

I'm so sad and so tired

Thank you, tanda.  Mom is on Medicaid, not Medicare.  I don't know if the transitional hospital is related to the hospital where she had the colostomy.  I'd rather not publicly say where I'm located.  I am in contact with some caregiver group that I found out about from a call to the ACS but it's a drawn out thing where I have to schedule a meeting with them for them to maybe do anything to help me.

I visited Mom in the transitional hospital for the first time tonight.  It's for financially poor people like us.  We begged the case worker from the colostomy hospital to put Mom in a place near home because we don't have a lot of money and I essentially don't have a car and work the two retail jobs but Medicaid wouldn't cover anything near us.  Colostomy hospital of course abruptly discharged her and stuck her here without really asking us where Mom wanted to go, not that we have a lot of options with no money.  In a STRICTLY medical way, Mom asked me to look at the tumor growing on her inner butt cheek.  I started crying hysterically.  It looks terrible.  I didn't have the heart to tell my Mommy this, but the reason I keep crying about this and why it's so triggering for me is because it looks exactly like the mast cell tumors that were all over our dog's body a decade ago.  Our dog essentially died of cancer (she stopped eating and was in excruciating pain and depressed, so we made the decision to put her down).

They wait until late at night to load up Mom on the meds she needs to have a little less excruciating pain.  Then she gets really chatty.  Then I see shades of my real Mommy.  Then she keeps me up half the night talking when I really need to sleep/get a ride home in the middle of the night.  But I already feel my Mommy fading away.  She's too young.  No one can help us. I don't think.  People just want their money/tell us what they think we want to hear.  

She wants to see an OBGYN for an ultrasound of her uterus.  The cancer might have spread to her uterus.  The cancer might have grown into her inner butt cheeks.  The cancer might be in her pelvic lymph nodes.  Of course, the oncologist's assistant didn't tell us this when Mom got the ultrasound in April.  They kept the results to themselves because Mom wouldn't make a followup appointment at the time. 

Mom keeps saying that if it wasn't for me and the dogs, she would pray to die.  She says she has no quality of life.  She keeps telling people this and no one seems to care.  Nothing gets better.

I have to pretend to be happy in customer service in order to pay our bills.  I'm uncomfortable.  I feel stuck.  I'm crying as I write this.  My old life wasn't perfect but I would give anything to have it back.  I feel like my Mommy will be dead soon.  I want to have hope but it feels hopeless.  I have no family.  I have no friends.  I'm afraid I'm gonna be homeless (long story; I'm not getting into it).  The dogs are major emotional comfort but there's only so much they can do.  I have no money.  Every time I try to do pretty much anything these days, it's usually a struggle, including things that shouldn't be a struggle.  I have no energy.  I'm so lonely.  I need talk therapy BADLY.  I really need to formulate a game plan here.  Naturally when I'm finally ready for therapy, I have no money.  The universe couldn't have picked a worse time for this.

Mom got a voicemail from some anathestia (sp?) group tonight.  She keeps getting bills from her hospital stay in March.  The person who fast-tracked my Mom's Medicaid said the Medicaid would be retroactive to her hospital stay and would cover everything but she keeps getting bills and now she's getting a threatening voicemail.  I'm afraid to keep opening the bills so I stopped.  I can barely cover the water and electric bills, her meds, transportation, food.  She can't afford this.  And if she dies, I'll get stuck with these bills.  I wonder if we're going to get more bills we can't pay from her latest hospitalizations.  I thought Medicaid covered everything.  Did the Medicaid person at the first hospital lie to us?

Why is this happening to us?  We're not perfect but we're good people.  Of course, nobody deserves this.  I hate my life.  I feel like I'm going to lose my Mommy, my only person in the world, to a preventable, curable cancer.  I already feel like I'm losing her.  I need help but every time I try to get help it drags on endlessly and nothing ever changes for the better.   Work takes forever for very little money.  Transportation takes forever and/or is very expensive.  I always have to be go, go, go.  I never have a chance to explore my feelings and figure our what I really want and need.  Everything drags.  I want my Mommy back but she might be already gone.

wanttofeelgood...

Hi,

We are still here with you for support, don't ever forget that!

Across the country there are various resources to help with the financial obligations of cancer treatment, but some offer more than others. I heard of this a while back but never checked it out myself....you may find some real help here:

https://money.usnews.com/money/personal-finance/articles/2014/02/10/how-to-pay-for-cancer-treatment-when-youre-broke

  If nothing else, call 877-336-7287, the number for the Patrick Dempsey Center for Cancer Hope & Healing in Lewiston, Maine. Anyone in any location can call, says Mary Dempsey, the center's assistant director and sister of the star of the ABC series "Grey's Anatomy." The center, founded in 2008, was inspired by Dempsey’s mother, Amanda, who has a rare form of ovarian cancer. It provides free support, education and integrative medicine to anyone affected by cancer. You may live nowhere near Maine, but if you don't know what services are in your area, Mary Dempsey says a financial counselor at the Dempsey Center may be able to guide you to a service or organization in your area.

Also there is help through a program called CareCredit (some states/counties) have a different but similar program. You can contact them and let them know of any outstanding medical bills and maybe they can help....https://www.carecredit.com/howcarecreditworks/prospective

Along with that, I'm quite sure you will be ok with having Medicaid cover most if not all of your moms expense. Medicaid is a BUSY program and they are correct on the message you got about being retroactive. The bills will likely end up being covered but until Medicaid catches up the provider will send them....don't worry about them right now, eventually you'll probably get a statement saying they were paid (or at least a large amount).

When will your mom begin chemo and radiation? Although painful, once treatment begins those ugly tumors will begin to shrink and I bet you'll both notice a difference in pain. There will be side effects from the treatment that will surely be uncomfortable, but in comparison to the pain she is in now, it may in a weird way be a welcome change...or so I'll pray.

Please stay in touch, and know you are in my thoughts and prayers.

katheryn

 

 

 

 

 

 

Ohmy

Hi want to feel good,

Hi want to feel good,

As a cancer survivor and a care taker, I can understand the pain you feel watching your mother suffer.  Sometimes the best therapy is free.  Contact the American Cancer Society to find out if there are any groups meeting in your area.  Just being able to talk about your experience with people going through the same thing can help.  You always have us but it sounds like you are going down the road of depression.  You may need some face to face interaction and you may even make some new friends.  Katheryn has given you some good contacts.  She is wonderful and I agree, chemo will shrink the tumor and hopefully ease your mother's pain.  The important thing to remember is that a care taker must take care of herself.