At a standstill for now

Thanks to everyone reading and commenting/advising.  I still have PTSD/social phobia and still have a hard time dealing with people/expressing myself clearly, even through my mother's health crisis.  I frustrate myself at times.  Bear with me.  Medicaid approved the PET CT.  It was done over a week ago.  The oncologist's office said it confirms that my mother has anal and colon cancer (the doctor who did the biopsy at the hospital last month that diagnosed my mother's cancer in the first place said anal and rectal cancer) and that it doesn't appear to have spread but we won't know for sure until my mother has surgery.  I feel like they're not telling us the whole story.  Before the PET CT, my Mom had a consult with a surgeon.  The surgeon said that my mother needs a one loop ileostomy and possibly a colonoscopy if she is able to drink all that stuff you're supposed to drink the day before you have it or whatever it is.  My Mom has had a lot of GI problems for years.  Her cancer is a GI cancer.  Pain meds still an issue.  It took 3-4 WEEKS for the oncologist's office, the pharmacy, and Medicaid to get their acts together to submit and approve the TAR for my mother's liquid opioid.  After all that, someone at the pharmacy when I tried to fill the prescription casually told me that the TAR only covers one lousy bottle of medicine.  That my mother needs every week.  Thanks for nothing.  They cover my mother's medicine in pill form but not in liquid form.  I asked someone at Medicaid over the phone why they cover my Mom's medicine in pill form but not in liquid form and they wouldn't give me a real answer, just said some nonsense about doing another TAR, as if I have nothing else going on.  I can't and won't do that every week.  It's soul-sucking, deliberately I'm sure.  I don't have a lot of money but I've been on this website where you can print out/download a coupon and that can lower the cost of the meds, hopefully.  I hate this situation.  It's terrible to be diagnosed with cancer when you have next to no money.  I mean, no time is a good time for cancer.  I just feel especially ill-equipped to deal with this right now emotionally and financially.  But I don't have a choice.  I'm here.  Mom's my best friend and I'm terrified she's going to pass sooner or later from this.  The oncologist continues to prescribe the pain meds.  We're feeling pressure from the oncologist's office to get the ileostomy ASAP.  My Mom and I are WELL aware that she needs medical intervention.  She has a million questions that she doesn't feel are getting answered.  I know she got the phone number to a patient advocate recently and called but they were closed.  It's still the weekend.  Hopefully she gets some help soon.  It just feels like things are dragging on.  Mom's terrified she's going to die in surgery or from surgery complications.  She's terrified of radiation; she's ALREADY in excruciating pain.  She wants to live, of course.  The surgeon wanted to rush Mom into the ileostomy/possible colonoscopy just a few days after the consult, but they seem to have backed off for now (though they keep sending annoying emails/voicemails about watching videos related to surgery/hospital stay, as if we have nothing else going on but to watch/share their precious videos).  I recently stumbled across a book written by someone who's against chemo/radiation/surgery.  I emailed the author.  We spoke on the phone.  The author connected me to an alternative doctor.  I also spoke to the doctor on the phone.  Basically, the author and the doctor recommended nutrition/vitamins to treat my mother's cancer.  The doctor tried to sell me on a vitamin regimen that costs thousands of dollars, and that's the cheaper package.  Where would I possibly come up with that kind of money?  And my Mom exercised and took vitamins for decades and she still got cancer.  I'm not anti-vitamin, but she needs a little more than vitamins right now.  I'm scared about what the surgery/radiation/chemo will do to my mother.  I'm scared about what the cancer has done/will do to my mother.  I still feel like we're in the dark about my mother's cancer.  We still don't know what stage it is.  I feel like these doctors know more about our future than we do.  I don't want her to die from cancer.  I don't want her to die from surgery/radiation/chemo.  I'm not ready for this.  I still don't have my transportation situation squared away (I don't drive at this time: PTSD).  One of my jobs is tolerable; definitely not my dream gig, though.  Far from it.  The other, the assistant manager doesn't like me for some reason and is playing mind games with me like messing with my hours ( I don't care about this person right back, but I care about my hours).  We're still waiting for Mom's disability application to be approved/denied.  I hate this situation. Money and friends would help.    I'm not really that close to anyone right now.  I need therapy but can't afford it right now.    I have a hard time trusting people because of my past.  I know most people are good but it's hard for me to figure out the good people vs. the bad.  I know I'm missing some of the points you made but it's late and that's all I got right now.  Thanks for letting me share.

wanttofeelgood said:

At a standstill for now

Thanks to everyone reading and commenting/advising.  I still have PTSD/social phobia and still have a hard time dealing with people/expressing myself clearly, even through my mother's health crisis.  I frustrate myself at times.  Bear with me.  Medicaid approved the PET CT.  It was done over a week ago.  The oncologist's office said it confirms that my mother has anal and colon cancer (the doctor who did the biopsy at the hospital last month that diagnosed my mother's cancer in the first place said anal and rectal cancer) and that it doesn't appear to have spread but we won't know for sure until my mother has surgery.  I feel like they're not telling us the whole story.  Before the PET CT, my Mom had a consult with a surgeon.  The surgeon said that my mother needs a one loop ileostomy and possibly a colonoscopy if she is able to drink all that stuff you're supposed to drink the day before you have it or whatever it is.  My Mom has had a lot of GI problems for years.  Her cancer is a GI cancer.  Pain meds still an issue.  It took 3-4 WEEKS for the oncologist's office, the pharmacy, and Medicaid to get their acts together to submit and approve the TAR for my mother's liquid opioid.  After all that, someone at the pharmacy when I tried to fill the prescription casually told me that the TAR only covers one lousy bottle of medicine.  That my mother needs every week.  Thanks for nothing.  They cover my mother's medicine in pill form but not in liquid form.  I asked someone at Medicaid over the phone why they cover my Mom's medicine in pill form but not in liquid form and they wouldn't give me a real answer, just said some nonsense about doing another TAR, as if I have nothing else going on.  I can't and won't do that every week.  It's soul-sucking, deliberately I'm sure.  I don't have a lot of money but I've been on this website where you can print out/download a coupon and that can lower the cost of the meds, hopefully.  I hate this situation.  It's terrible to be diagnosed with cancer when you have next to no money.  I mean, no time is a good time for cancer.  I just feel especially ill-equipped to deal with this right now emotionally and financially.  But I don't have a choice.  I'm here.  Mom's my best friend and I'm terrified she's going to pass sooner or later from this.  The oncologist continues to prescribe the pain meds.  We're feeling pressure from the oncologist's office to get the ileostomy ASAP.  My Mom and I are WELL aware that she needs medical intervention.  She has a million questions that she doesn't feel are getting answered.  I know she got the phone number to a patient advocate recently and called but they were closed.  It's still the weekend.  Hopefully she gets some help soon.  It just feels like things are dragging on.  Mom's terrified she's going to die in surgery or from surgery complications.  She's terrified of radiation; she's ALREADY in excruciating pain.  She wants to live, of course.  The surgeon wanted to rush Mom into the ileostomy/possible colonoscopy just a few days after the consult, but they seem to have backed off for now (though they keep sending annoying emails/voicemails about watching videos related to surgery/hospital stay, as if we have nothing else going on but to watch/share their precious videos).  I recently stumbled across a book written by someone who's against chemo/radiation/surgery.  I emailed the author.  We spoke on the phone.  The author connected me to an alternative doctor.  I also spoke to the doctor on the phone.  Basically, the author and the doctor recommended nutrition/vitamins to treat my mother's cancer.  The doctor tried to sell me on a vitamin regimen that costs thousands of dollars, and that's the cheaper package.  Where would I possibly come up with that kind of money?  And my Mom exercised and took vitamins for decades and she still got cancer.  I'm not anti-vitamin, but she needs a little more than vitamins right now.  I'm scared about what the surgery/radiation/chemo will do to my mother.  I'm scared about what the cancer has done/will do to my mother.  I still feel like we're in the dark about my mother's cancer.  We still don't know what stage it is.  I feel like these doctors know more about our future than we do.  I don't want her to die from cancer.  I don't want her to die from surgery/radiation/chemo.  I'm not ready for this.  I still don't have my transportation situation squared away (I don't drive at this time: PTSD).  One of my jobs is tolerable; definitely not my dream gig, though.  Far from it.  The other, the assistant manager doesn't like me for some reason and is playing mind games with me like messing with my hours ( I don't care about this person right back, but I care about my hours).  We're still waiting for Mom's disability application to be approved/denied.  I hate this situation. Money and friends would help.    I'm not really that close to anyone right now.  I need therapy but can't afford it right now.    I have a hard time trusting people because of my past.  I know most people are good but it's hard for me to figure out the good people vs. the bad.  I know I'm missing some of the points you made but it's late and that's all I got right now.  Thanks for letting me share.

Overwhelmed, no emotional support

Yesterday I picked up the prescription for my mother's liquid opioid from the oncologist's office.  I deal with the oncologist's assistant.  The prescription was waiting at the front desk.  When the receptionist handed it to me, it was the wrong amount so I had to ask for another prescription.  The oncologist's assistant came out and asked me if I was sure I wanted the other amount.  Yes, I was sure. The assistant went back and had the doctor fill out a new prescription in the correct amount.  The assistant came back and once again pressured me to get my Mom to get the ileostomy.  The assistant all but said that the doctor will stop prescribing the meds until after my mother gets the ileostomy because "all" the doctor is doing for my mother at this time is pain management and that's not what this doctor does.  I put a smile on my face and said I'd let my mother know and left.  Today I'm going to try to fill the prescription at a different pharmacy because the one I have been going to won't have the medication in the amount prescribed until tomorrow and I am so tired of the nonstop runaround I get from those guys regarding the Medicaid TAR, pricing, availability, attitude (my mother might be dying and I'm all alone in dealing with this-I don't expect anyone to kiss up to me but cut me a little slack, I'm stretched to the max here).  I'm not sure what to do about my mother's pain meds situation.  She doesn't have a primary care provider and I'm not sure that they would prescribe a controlled substance.  Maybe a pain management doctor would?  But I'm trying to see if they're covered by Medicaid and so far not finding anything there.  I have to leave for work in an hour and a half.  I'm waiting on a call back from another doctor's office and all I needed to know (my Mom asked me to call them) is if they accept her insurance and if they do chemo (she doesn't want this oncologist who has been prescribing the pain meds to do her chemo since they're playing God with her life, trying to pressure her into a life-altering surgery she needs to emotionally prepare for).  I feel so all alone.  I feel like Mom expects me to come up with all these answers and like I'm not trying hard enough and I need to keep it together.  I want to help.  I want to keep it together.  Pretty much everyone I deal with seems to jerk me around right now and nothing seems to be falling into place, not even Mom's pain meds.  I don't mean to be a big baby but I don't know who to call or what to do right now.  I feel like there's a chance to save my Mom's life here but I feel stuck/overwhelmed right now.  Mom is still waiting to hear back from the patient advocate.  I thought she was an urgent case with her advanced cancer.  This has been dragging on now for almost two months since her initial hospitalization/diagnosis.  We still know know what stage her cancer is and if it has spread to other parts of her body.  I don't understand what is going on here.  I just want peace and my Mom to be healthy.  (P.S. In the past, my mother has tried crushing pills and mixing them in applesauce.  The taste makes her gag.  It works for her for vitamins but not for meds, I think.  Plus, some pills are time-released so you can't crush those pills, of course.)  I get to work all day tomorrow.  I feel like I'm not doing right by Mom but I'm cracking right now.  I went to a support group last night (not cancer-related) and just as I got the courage to share someone told me to speak up and it ruined my whole train of thought.  I couldn't do what I needed to do.  That person ruined what I needed to do.  I need divine intervention.  Thanks for letting me rant. 

UPDATE: colostomy, out of hospital #2, in hospital #3, PET CT CD

Thanks for the encouraging words, Msmoxie and eihtak. 

Where do I begin?

June 12 afternoon, Mom had the surgery.  The surgeon went with a colostomy.  They gave her blood transfusions before and during the surgery.  They wheeled her into surgery and then I had to immediately leave to ride app it home to do a closer at one of my retail jobs (because of the PTSD, I didn't learn to drive. I regret that now.  ).  The hospital is about a half hour from our home.  That was a weird day.  While I was getting ready for work, I got a call from the case manager at the hospital.  I could barely concentrate on what she had to say.  Mom wanted to go into a skilled nursing home near our house after she got discharged from hospital #2 to learn to live (temporarily, the surgeon says) with the colostomy, plus the picc line for the IV liquid nutrition.  The case manager said something about they didn't know what Mom's needs would be/recommendations from the doctors, etc., but she'd put in the word for something close to home.  Then, literally as I'm about to walk out my front door to do another ride with an app for work, the surgeon calls.  I immediately panicked and asked, "What happened?"  He said the surgery went well and quickly.  Mom was coming out of anasthesia (sp?).  He told us during the second consult that he wouldn't know until during the surgery if he would do an ileostomy or colostomy.  I asked him, and, like I wrote above, colostomy.  I'm sure I spoke to Mom later that day on the phone during my break.  I can't remember everything, it's all a blur. 

The rest of last week and early this week Mom was at hospital #2.  It was actually a very nice room.  No roommate.  But nurses and doctors and food service people and housekeeping people waking up Mom every few hours for meds, vitals, to talk about her "case," food orders, pick up trash, etc.  Mom needs liquid meds because she has a spasmic esophagus.  Technically she can swallow pills, but they get stuck in her esophagus for hours at a time and cause her agony.  For whatever reason, a lot of her pain/anxiety/sleep meds kept getting ordered in pill form.  They would crush those pills (except for Cymbalta, which she couldn't take because it's time-released and only in pill form, yet for some reason it kept getting ordered for her) and mix them in pudding.  The crushed pills burned Mom's esophagus and made her nauseous.  As if she's not in enough pain.  Tylenol, Ativan, Remeron, Ambien, Oxycodone, potassium, gabapentin, etc.  My spelling might be off on the meds.  I stayed with Mom as much as I could.  Like I wrote earlier, we live a half hour or so away from the hospital.  I don't drive, our car situation is complicated right now, I have the two retail jobs, and I had to feed the dogs.  Our family lives out of state and we are estranged from them (abuse issues).  I have no father, no siblings, no friends.  I like a lot of my coworkers and some of them have gone above and beyond for me (rides home-I live close to my two jobs, and one even gave me a ride to hospital #2) but understandably they have their own lives and we don't know each other that well.  (Plus I'm nervous: I tend to either talk too little or talk too much.  I love myself, as everybody should love themselves, but I'm not always my best representative.)  Not making excuses, just telling my truth as I see it.

So this hospital #2 stay went back-and-forth for a week and a half, lather, rinse, repeat, as they say.  The case worker told us that she got Mom a bed at a "transitional care" hospital, a place people stay when they have to leave a regular hospital but aren't ready to come home yet.  Everyone at hospital #2 was vague about when Mom would be discharged and put into hospital #3.  On Monday, out of the blue, I get a call from someone at a different "transitional care" hospital that I had never heard of and apparenly Mom didn't either when I mentioned it (she's in SEVERE depression/anxiety).  This person told me that the case worker from hospital #2 called them.  I said I only heard about the other place.  This person asked me to come in and tour the place.  That overwhelmed me.  Finally she offered an email tour of the place and I accepted.  I haven't watched it.

Monday I didn't have work.  I planned to come to hospital #2.  When I spoke to Mom on the phone, she felt hopeless because the doctor told her that they need a copy of her PET CT before they can start radiation/chemo (long story short: Mom got a PET CT at a different location in April, hospital #2 can't access those records, Mom had to sign a release form to authorize the PET CT place releasing their findings to hospital #2, fax sent on June 11, PET CT CD sent on June 12, someone (no one recognizes the name) at hospital #2 signed for PET CT CD on June 13, and after that, no one at hospital #2 could find the PET CT CD).  So then I had to play detective, calling the PET CT place, calling the nurses with my Mom at hospital #2, calling the colorectal surgeon's office who did Mom's colostomy.  One of my Mom's nurses at hospital #2 suggested I actually go to the PET CT place myself and personally pick up another copy of Mom's PET CT CD, which got me thinking.  Finally, I called the PET CT office again and asked them to send a copy of the PET CT CD to our house.  The receptionist said it would arrive by Wednesday (today).

I did an overnight with Mom at hospital #2 on Monday (they have a nice foldout couch/bed, blankets, pillows).  I planned to leave Tuesday afternoon to go home to check on the dogs/get ready for another retail closer.  I planned to come back Wednesday night after an all-day double-hitter and do another overnight.  Hospital #2 seemed to be hinting that Mom would be discharged Friday.  That's what I was (sort of) prepared for.  That's not what happened.

Tuesday, 7 A.M., we're asleep.  Mom has earplugs in (insomniac).  Group of doctors bursts into Mom's room and tells us excitedly that Mom's being discharged TODAY.  Mom couldn't hear with the earplugs (I think; I wasn't awake).  I heard very clearly.  I'm numb/panicked/not awake and I ask when.  Doctor doesn't know but assures me it won't be for a while and we can go back to sleep.  We do.

11 A.M., I wake up and leave Mom's room to get a drink.  When I come back, I randomly (?) run into one of Mom's nurses.  She just happens to tell me that Mom will be kicked out, I mean, discharged, at 2 P.M.  Three hours from now.  Mom's still asleep.  Her things aren't packed.  I don't know if she knows what's happening yet.  She's being shipped to the first "transitional care" hospital we heard about.  No mention of the second one that called me.

I come back to Mom's room.  She's awake.  The next three hours are a blur. She knows.  Mom orders brunch.  I keep asking the nurses for more and more bags so I can pack her things. Mom brushes her teeth. They still won't let Mom shower because of the picc line/colostomy bag. They've barely been giving Mom instruction on how to use her colostomy bags.  The nurse who told me we're being kicked out has a bad attitude because Mom got poop on her colostomy bag when she had to empty it herself.  The same nurse gave my Mom attitude earlier when Mom asked for help emptying her bag.  Mom can't lay on her back because her behind feels like it's on fire 24/7.  This nurse insisted she couldn't get all the poop out of the bag because Mom wouldn't lay on her back.  She CAN'T lay on her back!  She's not being a diva.

I haven't even had time to find out the address and phone number of the place Mom's being shipped to.  Finally, the time comes.  Ironically, I had planned to leave at 2 anyway.  I had to ask one of the EMTs for the address/phone number of the place.  I walked with Mom and the EMTs to the ambulance.  Mom had been worried about how she would get transportation to her next place. I cried.  Then I ordered a ride from an app that caused me another nightmare (another story, another venue).  I haven't seen Mom since.

We've been calling each other since then.  This place is also about a half hour or so away from home, in a part of town I barely know.  Mom was having a lot of problems with the phone in her room but they fixed it this afternoon.  She has a roommate with a loud beeping machine for health issues.  She told me she's slept for maybe 2-3 hours since getting there.  She's requested another room.  She's waiting.  Hospital #3 does not have the resources of hospital #2.  The sink is OUTSIDE the bathroom.  She's still not bathing properly.  Mom is miserable.  She has no privacy.  Tonight I suggested Mom come home.  She said no; she'll be miserable wherever she is.  We still don't have her pain medication situation figured out.  Mom wants a different oncologist.  She still doesn't have a primary care physician.  She told me she feels hopeless.  She's said this before.  She said she feels like the cancer has already won.  She feels on fire.  I feel like I need to do a lot more to help her but I don't know what to do.  I'm scared.  She told me to research the other "transitional care" hospital but worries that she'll be unhappy there as well.  Me too.  I wanted to stay with Mom overnight tonight but she said no.  The room is small.  Apparently I have to ask for permission to be there and they have to get me a cot.  Mom feels this whole situation is beyond our control.  I wish we had more money so we could have options here.  I'm so drained from the bureaucratic nonsense.  Someone at hospital #3 treated Mom with horrible disrespect.  VERY misguided.  Mom is a CANCER PATIENT WITH SEVERE DEPRESSION/ANXIETY, not a criminal.  I'm scared Mom is going to have a stress heart attack.  She's alone there.  I want her back home even though it's far from perfect but Mom says she's not ready.  She said she'd be screaming in agony at home.  It wasn't perfect but when Mom went into hospital #2 on June 8, I felt OK-ish.  Now I don't know.  She's bleeding from her privates, probably fistula.

Oh, I got the PET CT CD tonight after my coworker drove me home.  I read the report.  Mom hasn't seen it (she knows I post here).  We still don't know what stage my Mom's cancer is.  Anus/rectum.  Uterus suspicious (doctor at hospital #2 said that to Mom).  Right scalp suspicious (huh? NO ONE said THAT).  Atherosclerotic aortic calcifications (not surprising based on past stuff, I guess).  Liver, pancreas, kidneys, etc., normal.  Something about lymph nodes may be inflammatory.  CANNOT exclude metastatic disease.  It might be too late to save Mom.  No money, no support system, Mom feels trapped.  I don't know what to do.  I'm trying to stay positive like my coworker says but I'm scared.