Saturday, December 31, 2011

I received the surgery!

It took many days and over a hundred letters and I had no hope in sight.  My oncologist felt so badly for me.  Come to find out, he was good friends with the only surgeon in Nevada who does this type of surgery - the surgeon who had already turned me down, and who I was not very trusting toward. My oncologist asked his surgeon friend to do the surgery for me.  Part of this was facilitated by my cancer Patient Advocate from Paitentadvocate.org.  There is in my humble opinion, no greater group than Patient Advocate.  My advocate made hundreds of calls and helped with online research and contacted my doctors directly (with my permission), and helped facilitate what happened next.

My oncologist asked his surgeon friend to do the surgery for me for free. And his friend agreed.  Or I should say, the doctor is not worried about my non-payment for his services.  He will simply bill it, it goes unpaid, and ends up on my mounting bad credit history.

My surgery was performed on Dec. 7th.  I had a 10% chance for survival of the surgery and subsequent recovery.  I survived the surgery and was awake and aware on Dec. 10th, which was also the day I came down with an infection.  They say if the surgery doesn’t kill you, infections after the surgery will.  Due to an immense amount of prayer, I also survived the infection.  The doctors removed six inches of my esophagus including the tumor, two inches all the way around it, 20 lymph nodes and 2/3rds of my stomach with the Iver-Lewis gastrectomy/esophagectomy.  My stomach was cut open from my chest bone to the top of my pubis, my back was cut open diagonally from my right shoulder blade to my left hip, three tubes were attached for drainage of the chest at my right hip, and a J-tube stomach feeding tube is attached to the front lower portion of the stomach that is left.  But I’m alive.

I came home December 22nd in time to spend Christmas with my family even though it was from bed.  Someone so sweet put our name in for charity groceries and gifts.  We received a turkey and trimmings.  It was enough groceries for almost a week.  My son’s girlfriend came over and cooked everything.  The baby received a Fisher Price Terminal and Airplane.  It had dozens of little people in it.  He loved it.  He put the people in the plane and took it to bed with him he loved it so much.  It made me feel sad that we can’t get him things more often, but most our cash goes for gas, food and diapers.  His real dad actually sent him a gift, too – Kung Fu Panda double video box and a bunch of the McDonald’s Kung Fu Panda toys.  He loves those, too.

I’m still in a great deal of pain.  The pain meds make me too sick and dizzy to take.  So I suffer the pain as much as possible and take nausea meds to prevent puking from the pain.

I’ve begun receiving the bills from the hospitals and doctors.  So far, we are up to over $500,000.  I have a form letter I wrote before the surgery explaining my circumstances and that they will not be paid, ever.  I send it out to everyone.  But I still have one bill collector that calls me no less than 22 times a day, even with the letter of explanation and the Cease & Desist calling notice.  I can’t get them to stop, and when I pick up the phone to answer, they hang up on me.

Sorry, too tired to write more.  I’ll write again when I feel better.

Monday, October 24, 2011

Continuous Deluge of Disaster

First and foremost, thank you Allie for the diaper coupons.  I’ve been holding on to them, waiting for us to hit bottom to use them.  And this week, bottom hit us hard.  The diaper coupons really, really helped.  The baby is so prone to rashes.  We have to change him religiously or he gets nasty rashes that are so hard to clear up.  He has a small rash right now.  We’ve been staying on top of it.  But we go through diapers like crazy until it heals up.  We even try using homemade diaper inserts to conserve.  Thank you so, so much.

I wrote earlier about HOPE.  HOPE is the worst thing a terminal cancer patient can experience.  HOPE is thrown at you from all directions by doctors, health care workers, everyone to prevent one thing – suicide.  I don’t understand it.  The health care workers are so adamant that cancer victims fight for that last breath, that last minute with family – to what end?  The cancer victim spends their last days puking and shitting themselves to death.  They are so sick that they want absolutely no company.  Conversations and socializing are just a painful task that reminds them they are dying.  What’s the point?

Against my best decision – to die with dignity and plan my last moments while I am still alert and able – I let my family talk me into staying long enough to try the surgery.  Keep in mind, the surgery is not a cure.  I am terminal. Surgery – if it is successful – only extends my life a few years.  And during that extension, I must deal with the aftermath of the surgery.  I will have no esophagus.  Nutrition will occur through a plug in my stomach wall with a nightly drip.  All food by mouth will be soft – baby food, pudding, jello, etc.  Many surgeries will follow the first, in order to widen the scar tissue in the throat for breathing, to plug leakage, to clear paths for swallowing, etc.  And I agreed to all this simply to make my family happier with the upcoming finality of my life.   

The past two months have become sort of a lull while waiting for the actual commitment to the surgery by the surgeon.  I sit here waiting for the continuing deluge of disaster.  And sure enough, it hits … our furnace and hot water heater went out all at the same time.  The furnace is 50 years old.  We did an $800 repair on it December 2009.  But now it’s lost its last leg and is leaking carbon monoxide.  It cannot be repaired and must be replaced.  At the same time, the water heater has also ended and must be replaced.  Estimates for the furnace have run $3800 to $7000.  The water heater will be about $400 installed.  On top of all that, the 50-year breaker box on the house also has to be replaced to handle the new furnace and other electrical items.  The breaker box has been flipping out every time we start the dryer or washer, or try to run a microwave or other type of appliance.  The box is so old; they no longer sell the breakers for it anymore.  Cost estimates on that have been offered at $700 to $1800.  That’s almost $10,000 in repairs due all in one month.

At this point in my life, it just doesn’t matter.  It’s like putting a bandaid on a gaping wound.  If something costs $100, we couldn’t afford it.  So $10,000 might as well be a million.  The only way we can handle this will be to scam it.  See if we can get financing for it and then hope we can make the $100 payment for a couple months that is also totally out of our reach.  I will have to sell our food and some of our bare furnishings just to make a couple months of payments.  We’re thinking about selling our queen bed and using some old twin beds for ourselves that we were unable to sell before.  And I have one ring left, I’ve been unable to sell.  I’ll try to sell that again.  I hate having this to worry about when I’m going to be having surgery.  The doctor says I need to be stress free prior to the surgery to help it be a success.  Well, that’s easy for him to say when he drives to work in his BMW after stopping at the Wynn for lunch and giving his landscapers instructions for his new yard.  He has no concept of being poor and dying poor.

My father always told me, “If it weren’t for bad luck, we’d have no luck at all.”  And it’s been true all my life.  Bad first marriage choice.  Thirty years of crap with him.  Years of fighting with an ex spouse over custody and child support.  Years of staying with him – for the children’s sake.  Elderly parents who are dying slowly and who need my care.  A child with a drug problem.  A grandchild with learning disabilities and seizures.  But I dealt with these problems – all this bad luck, and I think I dealt with them well.  I loved being a super mom.  I involved my babies in sports, soccer, cheerleading, drama, dancing, and just anything that added to their lives.  I drove a van, picked up their friends, planned great parties for them, camped with them – and enjoyed every minute with my children.  My children and grandchildren have been the one bright light in my life.  I loved rocking and smooching my babies and grandbabies through their sickness and happiness.  As my parents weakened, I responsibly stepped forward to provide their care without regret. 

Other than my children and grandchildren, I had little to no happiness in my life, and no good things to enjoy or celebrate.  Then my second husband came along, and I thought my “luck” had changed.  He was the dearest, sweetest, most loving man – and still is.  I would think, “If I can grow old with him then I cannot want for anything else.”  I didn’t care about losing everything and becoming dirt poor.  I didn’t care about leaving my beautiful home and moving in with my parents to take care of them.  I didn’t care about things like nice cars, fancy clothes, elegant dinners, or expensive vacations.  My children and he were enough!

But bad luck is part of my make up.  It follows me and pounds me into the ground.  Not long after moving in my parents, I was diagnosed with several debilitating diseases all at once.  So much for growing old with the new love of my life.  Within the timing of one year, I was diagnosed with rheumatoid arthritis, severe degenerative disc disease, fibromyalgia and multiple sclerosis.  Of course, multiple sclerosis was the worst diagnosis among the bunch.  It meant that would die much sooner than the ordinary length of life, plus I could end up in a wheelchair for the last few years.  The MS was very active when diagnosed and at the time I was experiencing weakened limbs, my legs collapsing under me, and vision problems.  All this was going on while I was providing end-of-life hospice in-home caretaking for my mother.

I faced it all.  If this was the end of life for me, I could handle it.  I had anywhere from three to ten years before the multiple sclerosis symptoms were severe enough to take away all of life’s pleasures.  I planned to enjoy my husband as fully as possible before I became incapacitated.

Then the bad luck struck again.  Over and over through my life it strikes.  Never giving me any rest.  A big black cloud floated by me and grabbed my throat, squeezing the little life I had left out of me.  CANCER.  Not just any cancer.  Not breast cancer or some cancer that has great bounds of donations and research for cures.  No.  It had to be a rare cancer – Esophageal Cancer.  And the diagnosis had to come after it hit the non-curable point – Stage 3 to 4.

Treatments, a small lull, upcoming surgery … more bad luck.  Over $10,000 in repairs strikes all at once for a new furnace, water heater and electrical breaker box.  Things we cannot live without.  Even if we try to finance the furnace and electrical items under my father’s credit, can we even afford the payment?  Not likely.  Plus we still need to scrape up enough to replace the water heater.  Why am I depressed?  Because I never see the rainbow.  All I get is the down pour of continuous black rain and lightening.  I’m so very, very tired.  I just want to go to sleep and not wake up to another problem or more blackness.  I would love to wake up to just one morning of bright skies, shining leaves, and flowers – but that’s probably just a description of someone’s funeral.

Tuesday, October 11, 2011

Still alive, maybe not for long

So, I lie here and choose – Do I want a few more months with my family?  Or do I buy a lottery ticket that either takes those months away or makes them longer?  What would you do?  My family is pushing for the lottery.  I just dont know.

I'm still alive and mildly kicking.  Had the flu all week in our house.  First the baby for it three days, then I had it for three days, and then it spread throughout the family and home.  Then I had another PET/CAT scan on Friday, right at the end of my flu run.  I had to drink that nasty barium swallow and they gave me dye for the first time.  I didn't get dye or barium before due to my allergies.  Those items just set off the flu symptoms again.  I spent the entire night puking and with diarrhea.  The whole weekend I was so weak.  I am still suffering from stomach cramps, lack of appetite and weakness today.

I have another doctor appointment today.  I dread going.  I really don't want to know the results anymore.  It’s always bad news.  I’ve had enough of that.  The results are setting me up for surgery with a doctor who is not as experienced in this type of surgery, at a regular hospital, rather than an experienced Esophageal Care Center.  The chances of survival are much, much lower if not completed at an Esophageal Center by a doctor very experienced in the surgery.  They are scheduling me here with the much less experienced doctor.  My survival rate for surgery here in Nevada is probably 5-9%, but at an Esophageal Center, I could have as much as 25% if it’s a good center.  You usually choose the surgery to be completed at the best center.  I don’t have that opton.

So, it's a roll of the dice, almost literally.  With no further treatment, they figure I will die before January.  With just chemo, it gets real iffy because the chemo makes me so sick.  With chemo, if successful, I might have another six months or I may have a heart attack from low potassium problems.  Within the next couple weeks, months, the tumor will invade my lung wall further and make breathing difficult.  It's already difficult to lie down and sleep, because it makes me cough mildly all night and also the stomach acid rolls up in my throat and tries to drown me.  The acid also burns horribly when it gets in the throat.  I will probably survive the surgery day itself, but it’s likely the surgery aftermath of leakage and infection will kill me within two to four weeks after the surgery.  So here are my only options:  (1)  No surgery, but maybe chemo, and I get to live until Christmas or maybe a month or two more, or maybe die instantly of a heart attack from the chemo side effects.  (2)  Or, submit to the surgery and possibly die during the surgery (3) Or have them open me up and close me immediately during surgery saying the tumor is too difficult to remove and spend my last weeks recovering from my body being opened from neck to hip, (4) Or survive the surgery, but spend my last few weeks in the hospital dying from infections and/or leakage around the stitching, (5) Or, get very, very luck and survive the surgery, survive the recovery and actually hit the less than 16% who live another 2-5 years, maybe before the cancer spreads again and kills me.  So, I’m rolling the dice for 4-6 months of life, 4-6 months of life with several months of puking, instant death within a week or two, slow agonizing death within a few weeks, or hit the lottery and live a couple more years.      

The only sunshine on the horizon has been my Patient Advocate.  She has worked so hard calling my doctors and everyone, hospitals all over, every place she can think of. I assisted, sick as I am at times, and tired as I am.  I am sooooo tired.  I sent out almost one hundred letters to organizations, groups, Esophageal Hospitals, doctors, and more begging for the donation of the surgery at a real Esophageal Center.  But my Patient Advocate is also on her last options.  She is currently in contact with UCLA, a last hope, but it’s not looking good.  They have already turned me down personally, so I’m expecting that she will get the same answer.

Can you believe this?  One of the responses suggested I obtain residency in their state to qualify for the surgery.  Residency was six months.  In the meantime, I would receive absolutely no medical care.   I told them I had only a few months to live without the surgery.  They told me it was worth a try.  Numbnuts!  

Sunday, September 18, 2011

Too Depressed, Too Tired - Need Diapers!

FOOD COMMODITIES SCAM:  I am so tired of deciding whether to buy more diapers, put a little gas in the car or buy fresh fruit and veggies.  We picked up food commodities Thursday.  I was so excited when I saw this huge tray of bread loaves.  They asked how many we wanted, and I asked how many can we have.  I took ten loaves feeling almost guilty about it as I planned stuffing and bread pudding in my head.  We have a van, and they load it in the back.  When we arrived home to unload it - the bread was all nasty moldy, squashed flat and repackaged in pieces, and very stale with some hard as a brick.  I was so disappointed.  Shame on them!  Why even hand out such things?  Plus we went to a lot of trouble to identify every one in the house to qualify for more boxes.  We were told we would get one box per person.  I didn’t know that so first month we received one box.  This month, our second month, I had paperwork for the baby and we spent twenty dollars to change my husband’s license to out new address.  We went through the line and we received one box again.  This time, on the side of the box, there was a number three with a circle around it.  It was the same size box as last month.  When we opened it at home, it actually had less in it than the single person box the month before.  I don’t get it.  But as they say, “Beggars can’t be choosers.”  At the very least, we should not have to endure being teased and having our time wasted due to misinformation – simply to get food for our household. It seems the government does not care whether they poison us or starve us.  But I’m desperate.  They got me.  I’ll be back.  Commodities can be picked up any Thursday between 9am-3pm.  That at least allows me several chances to hit one of my good days when I am actually able to pick it up.

FRESH PRODUCE OFFERS:  I’d absolutely love some artichokes, or squash, or other lively greens or fresh spinach.  One wonderful lady offered to line up a daily veggie pick up for me, free.  I really, really, really wanted it.  But the location was all the way across town.  My good and bad days are very twisted right now.  I cannot commit to anything daily.  If it could have been a day here and another day there, on my good days, I would have jumped at it.  But then I have to consider the gas it was going to take to drive that far.  More gas means fewer diapers.  I shouldn’t have to decide between good produce and fruits for my family and the pittance I need for the gas tank.  It’s just so unfair.

ENTERTAINMENT:  People do not seem to understand that most entertainment in any form, even so-called FREE entertainment has a cost.  It takes gas to travel to the destination, if it’s outdoors you need to carry water and snacks, if you are ill it eats up your energy, and most free events in my home area are dangerous to attend (especially if they are outdoors).  Free events seem to bring together gangs and bad elements in our area.  We cannot even walk peacefully down our street alone. A local street vendor was killed for his money, left to die in the street.  I am so sick of never going anywhere or having anything.  We cannot even afford a $1 movie theater because it takes gas, plus the $1 entry fee, plus we have to sneak in snacks and drinks for the baby.  That may add up to just $3-$5, but $5 is a huge decision for us - food, gas or diapers - not movies.  We use to spend a lot of time in the public library, using the computers, reading, attending little craft and puppet set ups for the kids.  But the library doesn’t really like children my baby’s age, and especially seems to dislike them if they are hyper-active.  The library, even though it’s free, is not really a place for us – or so we’ve been directed a time or two until it became an embarrassment to go anymore.  When I feel up to it, we go to Spring Preserves play park or Lied Children’s museum on the first Sunday of the month (with some old Bank of America debit cards from closed accounts).  They still work for the freebies and we use them until it stops.  Summers, we spend a lot of time at the Water Parks where the baby can play in the water outside for free.  When we have an extra $1 or so, we go to a public pool near our home, where it costs $2 for my husband and $1 for me and the baby is free.  If the heat is not too much, we let him play for hours.  But winter is coming.  That means outdoor parks in the cold wind, possibilities of gangs nearby.  

DIAPER COUPONS, UPCs, HELP!  We could sure use some diaper coupons and UPC codes for gas cards.  If someone would like to send us some, that would be spectacular and take a huge load off us.  We are working hard to potty train him.  We bought a used potty seat at the thrift store ($1) and several pair of cartoon underwear ($1 for all five pair).  It’s so hard to train him with being so sick and in so much pain.  It’s hard to be consistent and on top of him like we need to be.  Plus his attention deficit makes it more difficult.  We cannot force the issue too much, or he has a seizure.  We don’t need anymore hospital bills or sitting in the emergency rooms for 6-10 hours.

Sorry, but I’m very tired this week.  Maybe my end time is getting close.  I’ll write again soon.

Sunday, September 11, 2011

Offers too good to refuse?

CURING YOURSELF:  When it comes to “curing” yourself and/or offers of alternative cures and treatments, they are plentiful.  And many of them help tremendously, and some provide actual cures, and some are scams.  I’ve been luck.  Most people who have contacted me online with offers to help have been sincere and truly helpful.

OFFERS SO GOOD BUT REFUSED:  There are sooo many wonderful people here on Facebook and in Internet groups worldwide.  Several members of my Facebook page offered services such as recipes for raw foods, donations of organic produce, research time to find cost-effective or free items that can help me, free massages and reiki, and more.  I have done the research.  I know organic foods, raw foods, and smoothies made from fresh fruits and vegetables can help tremendously.  I know Reiki, massages, support groups and other in-person offerings can help tremendously.  And, yet … I’ve had to turn down many of these wondrous offerings.

WHY TURN THEM DOWN?  Sometimes the offerings create an additional burden on me financially.  An offer of daily fresh vegetables, fruits and organics is wonderful.  But if I have to drive across town, daily, or even several times a week, to pick them up, then it becomes a hardship financially.  Ten miles round trip, several times a week or daily, adds up to 40 to 70 miles a week.  Make it a month, and that’s a full tank of gas at $55 a tank.  The items are being given to me free but I cannot afford to go get them at that price.  Sometimes people offer me assistance like a massage or laying on of hands or other personal activity.  The problem I encounter here is such things must be planned and set up by appointment.  I really, really want them.  I know they help.  But I have to turn them down because I never know in advance whether my day will be good or bad.  I feel bad if I cancel at the last minute because I just do not feel up to going out.  On really bad days, I wake up unable to move without great pain.  On other days, I may be on my second or third day without sleep – insomnia has been an ongoing battle lately – and I am barely functioning, cranky and so tired.  Going out for anything seems like an excessive bother.  When I cancel, the person making the offer sometimes gets upset with me.  They do not know how much I sooo appreciate the thoughtfulness and offers.  But sometimes, when I have to turn them down, people become angry with me or think I’m too lazy to help myself or criticize my money management to obtain what I desperately need or want.  That hurts me so much that I tend to forgo all offers of help now. 

I WANT OR NEED IT, BUT CANNOT HAVE IT:  I wish I could explain cancer better.  There are so many things I want and need, but cannot have, simply because I do not have the energies to comply with what it takes to get them.  On appearance I seem like anyone else.  I may even appear fairly healthy to someone meeting me for the first time.  The only ones who notice the physical differences are family members and long time friends who see the extreme weight fluctuations, and those who see the Smart Port on my upper chest and know what it is.  They also seem to be the only ones who notice that I am lackluster and have lost all my normal energy.  I wear wigs when I go out in public for my own vanity.  At home I wear a scarf Allie sent me, because it is cooler.  People may notice I wear a wig, but they do not associate it with cancer.  Maybe that’s why so many cancer victims wave their bald or shaved heads proudly.  It tends to command respect from those who are healthy.  I was unable to gather enough courage to appear in public bald.  In the past, I put on make up daily, dressed nicely wherever I went.  I energetic, volunteered for everything, and I was an organizing and budgeting fanatic.  And I loved to cook.  All these things take energy.  These are things in which my family and friends notice a big change.  My cancer days run together and all look the same.  I spend about 24-36 hours fighting insomnia.  I spend that time lying in bed, writing and posting on the computer and reading, hoping it will make me sleepy.  The medications I take cause this insomnia.  Finally, I just pass out from lack of sleep.  I sleep 12-20 hours straight through.  When I wake up, I hurt from head to toe.  It feels like my bones are rotting.  I ache from the inside out.  I take pain medications (the same ones that caused the insomnia), eat a little bit all day long.  I try to eat constantly – mostly out of fear.  I’ve convinced myself that if I continue to eat all day long I can keep the tumor passageway open – prevent it from growing shut, which will mark the end of my days.  So, I eat, I clean a little, and I try to run errands.  After about three hours of being awake, I feel so very tired.  I feel like I’ve been running and working hard for days on end – but it’s only been a couple hours.  I lie down and try to sleep again.  Sometimes I can nap for a brief time, and sometimes it starts the long insomnia bout all over again.  So, scheduling anything, even a doctor appointment, or friend’s visit, or my baby’s birthday party – is nearly impossible.  Sometimes I just bite the bullet and make my way through it.  Like yesterday – the baby’s outer family threw a birthday party for him at Chuck E. Cheese.  It only worked because they offered to pick him up if I couldn’t make it.  Most of them are from Hawaii and were visiting for a week with other family members.  I struggled out of bed and managed to go to the party.  It was a huge process for me.  I was excited to get out of the house, and excited for the baby to see distant family.  But by the time I finished dressing to go, I was exhausted.  My husband drove us to the party.  The baby had a blast, and so did his Hawaiian family members.  I was just a party pooper with a pasted on smile.  They don’t know me well, so they didn’t notice, but my husband could tell.  We sat at the very end of the table and it was all I could do to last through the two hour party.  I went out to the van twice and lay down for a bit across the seats.  So, you see how hard it is to muster up energy or manage extra financial difficulties even when the offerings are free.

BABY’S BIRTHDAY:  He’s officially three years old.  His birthday was so sweet and wonderful.  The family took so many photos to take back to his great-grandmother in Hawaii.  They bought him tons of presents – lots or toys and some winter clothes.  He sure needed the clothes.  These clothes will be the only new ones he has for winter.  Everything else comes from the thrift stores.  Thankfully, he’s too young to care or notice.  He loved everything.  His favorite presents were the Nerf guns.  He got all excited to see Chuck E. Cheese (a worker dressed up) in person.  ChuckE placed a birthday medallion around his neck and they gave him a blow up crown for his head.  He was the center of attention from about 15 people, and he was so happy he was dancing around.  I’m glad we went, even though it tired me more.  It made me feel happy and guilty all at the same time.  Before the cancer, I would have been the one planning and throwing him a big family party.  But those days are gone for me.  I’m so thankful his outer family stepped up and did this for him.  It was such a long ways for them to travel.  When he’s older, my husband plans to send him out to visit them once a year.  Is it wrong of me to wish the gifts had been all diapers, clothes and needed items rather than so many toys!  I feel guilty that we cannot provide for the baby better than we have, and that toys are a luxury now instead of just fun.

Internet Bullies and *ssholes

SHUTTING UP THE NAYSAYERS:  I have these two naysayers (Internet bullies) following me pretty relentlessly.  One who started from Craig’s List (Fred) and claimed he had the exact same cancer (esophageal) as I, and he was also on Daily Strength.org.  In fact, he recommended me to the Daily Strength list before he started slamming me.  The other person (another Internet bully) thought he knew me from another website prior to my having cancer, and supposedly chatted me there.  I rejected him, explaining he had the wrong person, and he continued to follow me on this and other sites just to harass me.  He would not believe he had the wrong person.  Dumb*ss.  For a while they both stopped because I refused to respond them or post their crappy comments.  But Fred started up again.  I told him, “Enough” and to “stop” several times.  He was so sure he was right.  He claimed I was a scammer simply because I did not have the same cancer symptoms he experienced.  He said I must be scamming because I can eat (although it was a little painfil before the EGD) while he was unable to eat at all.  He is simply one of those people who are too stupid to be alive.  He cannot believe everyone’s symptoms are different.  Most of the slams he sent were anonymous, but his writing style and use of certain words exposed him as the same person.  In addition to being “stupid” he was also a “coward” when he sent anonymous comments.  Fred didn’t want me to know who he was when he bullied me, but I did enough research that I tracked both these Internet bullies down.  I know who they are and which groups they think they discovered me from and how they followed my comments.  Sadly, the second man had me confused with a really good friend of mine.  I used her computer for a while until she gave me a notebook computer she rarely used, to keep for my own.  My friend is actually the one who recognized the second bully’s writing style and his comments, and told me who it was.  He has stopped temporarily, and my only option to stop him in the future is to report him to his server, which will cause him to lose his account.  One more contact from him and he’s done for good.  The other bully, Fred, seems to have been on DailyStrength.org for some time.  I don’t know why he chose to harass me, but he did.  So, I have a challenge to Fred.  I’m beginning to wonder whether he is the scammer, scamming sympathy from the people on Daily Strength.  From the beginning I have offered proof of my diagnosis.  A few people have even taken me up on it, and I sent them my PET Scan results showing the tumor and degree of cancer.  I challenge Fred to send me one iota of proof regarding his “same type” of cancer that I have.  I’m willing to show him mine, now he needs to show me his (Fred).  You prove to me that you are not scamming the people on this wonderful supportive site.  Sadly, I think Fred simply has mental issues.  You know the type.  People who hang out on the Internet in various groups, usually anonymously, just waiting to pounce on someone with negative comments – they are called Internet bullies – and they are mentally ill.  I know Fred will not show me proof.  I know Fred will run and hide for a while.  I know Fred will come back after he formulates what he things is a good cover-up or excuse for his terrible behavior.  I know Fred will torment me again, or move on to torment someone else – because that is his nature.  But I warn you Fred – if I you harass see you harassing anyone else ever again, I will have a few of my computer geek friends attack your computer and ruin you and your malicious fun.  It will cost you more than you know.  I will also report your behavior to Daily Strength.org and you will lose all the friends you made on that site.  Enough is enough!  Shame on both of you pathetic cowards! 

Bad Week: Much Pain

BAD WEEK:  It’s been a bad week, and today is even worse.  No one told me about ALL the effects of the chemo.  It seems chemo also reduces the body’s inflammation diseases like diabetes and rheumatoid arthritis.  Even though the chemo is a horrible thing while taking it, and the after effects are equally horrible on your body – it did curb the pain of rheumatism for many months.  During chemo, I stopped taking blood pressure medicine, diabetic insulin, and medications/steroids for the arthritis.  It was hard to what a blessing that was because the sickness (puking and diarrhea) from the chemo overshadowed it.  But now every thing is pretty clear.  I’m taking all the medications again to control high blood pressure, diabetes and rheumatism.  And I am in pain constantly.  I can barely get out of bed in the mornings due to every bone and muscle in my body being sore.  I ache from head to toe.  Of course, that makes me worry more.  I worry that the pain may be covering up signs of the cancer spreading.  I worry that every little pain is something more than it should be.  I worry most of all about shooting pains in my head.  I have this one spot that aches off and on, that feels like my scalp is too tight or pulling in one little spot.  Same spot all the time.  I worry that it might be a cancer cell that spread to the brain.  Cells in the brain cause you to die very fast.  Sometimes, at night, my heart will beat very hard for a few minutes, like it’s really struggling, and I worry that the cells have metastasized to my heart.  I also have this little cough now, just when I lay down.  It’s just a puff cough, a couple times, and that’s all.  But I was told that my surgery, if I can find anyone to do it for free, will be refused if the tumor further invades my lung wall.  I wonder if the cough means it has invaded.  And yet, my tumor in my throat is not painful.  It does not seem to be blocking food at all.  I mention this because it is unusual in cases like mine – even lucky some say.  I know I should not expect it to last long.  Eventually the tumor will block my esophageal passage and I will starve to death unless I have a feeding tube placed in my stomach.  Of course, no one wants to that placement either.  It’s going to be a tricky minor surgery that involves pressure in the throat as they bypass the tumor to insert it from the inside out.  I know how this works, too.  They wait until I am too far gone to do it, so my possibilities of suing them for doing it wrong become nil.

I hurt all over all the time.  The pain feels like it comes from the bones.  I essentially hurt from the inside out.  It’s like my bones are causing the pain.  It hurts so deep inside the bone areas and seems to radiate out.  On top of the pain, I am still everywhere.  All my joints hurt, too.  I’m pretty sure it is the rheumatism and fibromyalgia.  I’ve always had a very high pain tolerance.  I’m allergic to so many medications, and one of them was Novocain used to numb you for dental work.  So, until I was in my late 30s, I had all dental work done without anesthetic.  My high pain tolerance helped a lot there.  Little did I realize that the high pain tolerance is probably due to extreme and wide spread neuropathy from diabetes.  Luckily, I have good teeth with only three small cavities over 50 years time.  Also, by the time I needed my wisdom teeth removed (just ten years ago), they had Lidocaine and I could take that.  I can deal with the pain.  I hate it, but I manage to survive it.  If I had to endure this type of pain from now on, I could keep going despite it.  I prefer the pain to leaving my baby and not seeing him grow-up.

All I want from life now is:  the contribution of surgery from UCLA to save my life.  If I cannot have that, then I want a little warning before I am too sick to control my circumstances, so I can die with dignity.  I prefer an insulin overdose to wasting away through starvation, brain cancer, or coma – with my family looking on  It’s okay if I suffer, but when it gets to the point they are suffering for me and along with me – then it’s time to go.

Saturday, September 3, 2011

You're dying. How about a vacation to die for?

BLEAK:  Things are looking so very bleak.  It’s getting very dark in my heart and soul. 

INSOMNIA:  I have had insomnia going on 48 hours now.  I don’t know if it’s just because I am worried about the future or if it’s part of the cancer, MS and other problems, or just the fact that I’m out of sleeping pills.  The doctor wrote me a prescription for Ambien over a month ago but I ran out several days ago and cannot afford gas to get it refilled till next week.  I really want to stop taking them all together, but I find that if I don’t take them then I don’t sleep.  I usually go two or three days without sleep and then take the pills for two days in a row, and then try to go without them again.  Plus this makes them last longer.

PUT SLEEPLESS TIME TO GOOD USE:  I at least put the insomnia to good use.  My very sweet online friend Allie gave me some links for adult-make-wish-type foundations.  I spent two whole nights looking for groups, foundations, and charity organizations to add to hers.  I sent a begging email letter to every single one of them.  About fifteen in all.  Plus I sent begging email letters to several more hospitals other than UCLA.  About five more.  Plus I’m emailing all the cancer links I can find whether it’s my cancer or not.

WORSE NEWS:  I fear further denials are going to push me over the edge.  No one seems to be able to help.  It gets darker and more hopeless each time I search for help.  I hate it that hope is fading quickly.  I’m only asking for someone to pay for the surgery, lodging and aftercare to save my life.  I’m not asking for cash to be given or sent to me, but for them to pay the care services direct.  I’m not asking for something frivolous like a family trip to Disneyland.  I just don’t understand the excuses and so many limitations on these charitable foundations.  I’ve already received responses from some of them.  There are only about four adult type links that I might actually qualify for.  About 70% of the links were for children only.  Another 10% were for elderly over 65 only.  But some excuses are more specific than that.  Some do not pay for any medical expenses, transportation or prescription help.  Some only pay for people in their state or specific city.  Some only pay for children and some only children between very restricted ages.  One only paid for patients admitted to the six hospitals in their area.  Some are for breast cancer patients only.  Several paid only for patients over the age of 65.  After you add all those up there were only about four left, but I wrote to all of them anyway.  Responses from the hospitals pretty much stated that I had to be indigent, a SSI, Medicare or Medicaid patient residing in their state, or insured or rich – if not within that criteria then I could forget it.  Believe it or not, our income is barely, just barely, above the poverty line, and that excludes us from most charity benefits.  I was denied for SSI because my husband draws unemployment and is not disabled himself.  SSI requires that we have absolutely no income.  I was denied Medicare because I’m not old enough.  I was denied Medicaid because we are above the poverty level (if we were completely without income and living on the streets we would be eligible for more, but we’d lose the baby to CPS).  And even then, we would not qualify for surgery for me out-of-state, even though no one here can do this rare surgery properly.  I received a county medical card, but it is so crappy, surgeons here will not even give me a consult on it.

VACATION TO DIE FOR:  I just don’t understand why taking a free vacation with your children, or going hunting, or having a big party is better than surgery to save your life.  A vacation seems so frivolous.  It’s like saying, “Hey, I’m going to be dead in a few months, but what the h*ll, I’m going to Disneyland.”  There is no wow factor in that for me.  All I can think about is, “This money could be helping me to live longer.  I could spend more meaningful time with my baby.”  Did you know - you can make a wish for a new car, vacation for the entire family, camp fun for the entire family, meet a celebrity, skydiving, take a jet ride with the Blue Angels, go to the Grammy Awards, go to a theme park, get a high-tech toy, travel, shop, get specialized furniture for a home, vacation in Las Vegas, go to a live football game and meet the players, and … well, you get the idea.  But I cannot seem to get donated surgery so I can live a little longer for the sake of the baby.

SLEEPING BEAUTY:  I am exhausted personally, and I have exhausted all avenues for help.  I’m so exhausted I don’t even have the energy to cry anymore.  I’m now just waiting for the last few responses or denials to my many emails – more likely denials.  One organizer was honest enough to say it was very unlikely I would find surgery help due to my cancer being so rare.  He said if it were more common like breast or prostrate cancer, I’d have a better opportunity for help.  If only I could sleep for a very, very long time and forget all this.

Friday, September 2, 2011

Need California residency or a nice insulin overdose!

First of all:  thank you Allie.  I’m saving up again for more diapers and your gift helps a lot.

CONTACTS FOR SURGICAL HELP:  I have contacted many web sites and the few esophageal specialty hospitals that are available.  The results were very depressing.  Most of the web sites referred to other web sites I had already contacted.  The adult-type Make-a-Wish places will honor a useless wish like meeting a celebrity or going on a vacation, but will not pay for medical expenses/transportation/lodging.  The only even mildly good answer I received - closed me out due to my state residency, and that was UCLA Esophageal Cancer Center - my first choice for the surgery.  Here is what they said directly to me:

RESPONSE FROM UCLA ESOPHAGEAL CENTER:  ["I am really sorry to hear about your predicament—its sounds really dire.  If you lived in California, I would simply tell you to apply for medi-cal, and that would be that, you could get it and have surgery at UCLA.  However, since you don’t live here you can’t apply for it.  I’m sure that Nevada has a similar program, you could look into it.  They most likely would not approve for you to come to CA for the surgery however.  You might be able to bank on the fact that there is no one there who can perform the surgery safely, and see if they’d cover it.  I know it’s a process to obtain medi-cal through the state (NV)—if you decide to try this route, I would push your oncologist to continue to give you chemotherapy (even low dose) so that you are at least getting some type of treatment while the paperwork is being processed.

I’m sorry I don’t have any further information for you.  We do frequently get patients from NV but we don’t have any programs or options for folks without insurance, unfortunately.

One other thing just popped into my mind, the LA county hospital (affiliated with USC) does take care of indigent people- so you might look into that.  I’m not sure if they take out of state folks or not but you could check into it."]

MY RESPONSE TO UCLA:  First off, I'll cover the suggestions UCLA made:
(1)  I already know that no one here can do or wants to do this surgery on me, nor would I want them to, due to their lack of experience, however, that does not mean Nevada will pay for me to go out of state.  Nevada already said they will not.  UCLA even states how difficult it is to obtain medi-cal in Nevada.
(2)  And I do not want to get the surgery at LA County Hospital.  It's imperative that the surgery take place at the specialty centers with the trained-for-this-type-of-surgery doctors and rehab assistants.  The survival rate for the surgery is very low when it is not completed by properly specialized trained staff.  And, as UCLA stated, they are not even sure if LA County handles out of state people - I can safely say they do not.

My only other option is to scam a residency.  From what UCLA tells me and responses from all the letters I sent out, California residency is actually my only option.  I know it's not entirely a legal thing to do, but I'm dying - so sue me or jail me, who cares.  Even with the surgery, even with a couple more years added to my life, I’d die before they could collect, sue me, or send me to jail.  And I’ll make sure my husband knows nothing at all about it, so the law cannot implicate him.  I’ll just tell him I was advised to go to California and I needed a local address to prove to the doctors I had a place close by for recovery.  The hard part will be getting residency for the surgery and applying for California medi-cal.  I am sure I can use my husband’s aunt’s address in California, but I will have to drive back and forth during the application process, probably several times a month for interviews and health contacts.  I’m not sure if we can manage the gas and lodging costs for a application process.  I’d ask to stay with my husband’s aunt to avoid motel costs, but they have a small two bedroom house with seven people already.  They’d say yes, as family, but I feel sick all the time from the cancer and I fear a crowded house would make me more ill, plus I’d be bringing my husband and child along, which makes the crowding worse.  So, we’d need to manage a cheap motel for overnight a couple times a month.  I know this would get me the surgery, but it doesn’t cover everything.  I also need someone to come to the hospital daily for two weeks just after the surgery to help with beating my back, etc., to prevent pneumonia.  Then, I’d have to manage home care in Nevada myself, afterwards, which is quite a bit of care.  But I’d make the home care work somehow with friends – maybe some of you who live close by and would volunteer to help? 

Who am I fooling here?  This is so hopeless.  Even if I scammed the residency, I can’t pay for motels and gas to get the application work completed on it.  Like UCLA said – no insurance, no help.  Out-of-state – no help?  Even in-state, I cannot get help.  Isn’t that sad?  I’m nobody and not worth helping because I have no insurance.  Plus I’d hate to go through all the trouble of applying in California only to have to be denied for some reason like the hundreds of times they denied me here.  But I’d be willing to try it if I could manage a motel and gas.  However – that’s as big a dream as not having the cancer in the first place. 

Why go on?  Why cause myself and my family further depression and suffering when there is no hope on the horizon?  I know I am not going to let my husband watch me deteriorate away with this cancer.  My oncologists have already described to me how the end process will be.  It begins with a light cough (which I already have every time I lay down).  The throat slowly closes again until I cannot eat, and a stomach/feeding tube has to be surgically installed.  The feeding tube involves someone setting me up with overnight feeding IVs to keep me going.  The cough becomes worse as the tumor invades the lung wall, and I have to be placed on oxygen.  As my throat closes more, I am subjected to stints and other surgical inserts to open the throat for breathing.  My voice will also leave when the tumor grows further.  I slowly starve and die, while my family watches.  And all of this will occur within 6-8 months, maybe sooner, maybe a little longer.  What would you do if this were you?  Luckily for me, I am diabetic and have a huge stockpile of insulin.  Going out will be relatively easy with just a diabetic insulin overdose followed by a coma I never wake up from.  I’ll be place in a county hospice, but it won’t matter because I’ll already be gone from this world.  If I cannot manage the residency change and surgery recovery, then I guess I have just a couple months until this downhill skid on my health begins and ends. 

Wednesday, August 31, 2011

New Answers Make Me Too Depressed

Final prognosis:  Eat shit and die!  Or in layman terms – Oncologist says, “We realize you are exhausted by the cancer, but without insurance there is nothing more we can do for you.  You need the surgery now.  You need to start the begging process and hope someone listens, feels sorry enough for you to provide the surgery as charity, and let’s you be their success story.  We are sorry, we truly understand your health issues, but we cannot help you or direct you to someone who can do the calling for you.  You have to do all the research, phone calls and footwork and begging on your own.  We understand who hard it will be, but there’s really nothing else we can do for you since you have no insurance.”

I had to cancel last week’s oncologist appointment because I came down with the flu.  Caught it from the baby, I guess.  I’ve been sick the better part the week, but feeling better now.  It gave the oncologist more time to find a surgeon consult for me.  Of which, we discovered will be NONE.

This may be the last time I write for a while – or ever.  The new doctors at the Cancer Institute have told me further treatment is useless if I am unable to get surgery to remove what is left of the tumor.  I already know there are no competent doctors in Nevada for this type of surgery.  My new doctors had to agree after they spent two weeks searching for a thoracic surgical consultation and could not get a single doctor to respond to them.  Last visit, my new oncologists were all hyped up, stressing how urgent it was for me to see a surgeon and schedule surgery, and promoting all the benefits and longer life from the surgery.  It was hurry, hurry, hurry, do not delay this.  This is a great thing and you are ready.  In fact, the supervisor practically guaranteed that I would get at least five years, if not more, if I got the surgery.  I was hopeful, almost happy after researching what she said and finding it could be true.  But on this last visit, she just hung her head and advised me to beg as much as I could for UCLA to do it free.

My outlook without the surgery, according to her, is fairly bleak.  No hope.  Just waiting to die.  She says I’ll most likely be gone before Christmas.  Don’t you just love it?  Again, I am slammed with hope only to have them pull the rug back and say, Oh, so sorry.  Guess more time living doesn’t apply to you after all, since you have no insurance. 

My insurance (COBRA) ran out at the end of July.  I just received my first bill from the first month of treatment while I was on COBRA – it was $127,000 for just one month, from just one bill collector.  I have two more months’ worth of bills coming from the same group which should be much higher.  I also received the insurance statement from the one thoracic surgeon that I spoke to in Las Vegas while I still had insurance.  Get this – he charged the insurance company $1,000 for a $200 office consultation that lasted ten minutes.  He didn’t even listen to my chest or anything else.  The insurance then paid out $295 for the office call.  He made sure he put enough charges on it to get his full office call payment instead of just the discounted office payment.  How would like to be the charity patient he is working on when there is a high paying insured patient right behind you?  Doesn’t matter because now he won’t even see me for that second consult because I have no insurance.

I always prayed I would not end up in the group of “have nots” when it came to medical insurance.  I watched my daughter-in-law over the years, sitting in doctor’s office after office, waiting for hours for an appointment.  The “haves” were always seen first.  We’d watch people walk in well after her scheduled appointment time while she sat in the hard chairs waiting, and they’d be called before her.  She was use to it, and seemed to be thankful the office would even take her.  She paid $50 cash for each office call, which, if you check your insurance statement, is about what your doctor gets paid via your insurance for the same office call.  What’s the difference?  If you have insurance they add all kinds of buttery money makers like injections, blood oxygen test (yes, some offices charge $10 to clip that little meter on your finger for three minutes), maybe even an oxygen treatment, vaccination or flu shot – and throw in a few x-rays and a great referral to another doctor – and well, payoff!  But no insurance and you lose.  You get 5-10 minutes of hurry up and get out, and maybe a prescription you are unable to afford to fill.

I guess the begging starts now.  I’m going to make a few calls, just like the cancer supervisor recommended – first to UCLA direct.  Then I’ll do research and try to call cancer foundations and organizations, make a wish (for adults) groups (since it seems I qualify if I have less than a year to live).  I feel like absolute crap all the time, barely getting out of bed most days.  On a rare good day of little energy, I spend it budgeting our few bills, playing with the baby, getting groceries, prescriptions and survival goods.  Now, I have to waste my dying time and lack of energies begging for help from dozens of organizations, many of which have already turned me down simply because I do not have the right cancer for them.  You see – they have to draw the line somewhere (or at least that’s what they say).  They can’t help everyone, so they choose one cancer like Breast Cancer or Lung Cancer to fight.  And I bless their hearts for that.  But I have to ask why they can’t widen their parameters and include everyone “dying” soon with cancer.  I understand their reasoning but it just makes me feel more depressed and hopeless.  My type of cancer only has about 16,000 diagnosed a year (about 200 just in Nevada) and out of that 16,000 more than 14,000 are going to die.  After a little more research, I find that most of those have no insurance.  I don’t want to fall into that group without insurance, without hope, but I guess I have no choice.

So here is where I stand:  On days when I can function enough to do the research, I need to find a hospital, group or organization that will pay all expenses incurred with:

(1)    Paying for surgery and recovery at UCLA’s Center for Esophageal Disorders; and
(2)    Paying for transportation for me (to and from Las Vegas) to the UCLA Center plus that of a family member or companion; and
(3)    Paying for meals and lodging for the family member or companion, since the surgery takes a full day and recovery is at least two full weeks of hospitalization and treatments, longer if I experience infection or leakage; and
(4)    Paying for in-home hospice/nursing care while I recover for an additional six weeks at home on a feeding tube and learn to eat solids again; and
(5)    If no family member can accompany me, since it is out of state, a nursing assistant or advocate who can remain with me during the in-hospital time who is suppose to assist with chest thumping and other healing measures.  (My spouse may not be able to accompany me since we have a three year old and no reliable child care, as well as an 80-year-old father with dementia who needs constant supervision.  My husband manages this most of the time, but it would be nearly impossible to find someone to sit with both of them for several weeks.  The baby doesn’t stay with strangers often and my father’s dementia precludes changes which disturb him greatly.)  I may be able to have my Marine son get time off to come stay with me, but that’s iffy, or an ex-husband whom I despise but who may be available and willing.  I fear the use of the ex might hamper my healing though.  I think I’d prefer a volunteer stranger.

There is so much that needs covered that I’m feeling a sense of doom and predetermination for my situation.  I have no hope that anyone will be able to help out with so much.  If only the other cancer center had hurried a bit, followed through on procedures instead of talking them to death and forgetting to set the appointments, if only … *big sigh* pigs could fly.

Is there any good news?  Little to none.  I guess I’m too depressed to search for any.  Our finances are still the same.  We struggle each month to pay our car payment, gas for job hunting, groceries, utilities (climbing higher each month), and diapers.  Every time we have a little bit left over, which is so rare, we wind up begging and borrowing for more debt.  Last month our window a/c went out.  The house was over 85 degrees inside.  The baby’s room was so hot.  We had to get another one.  The cheapest we found was $400.  Thankfully we found some free food banks in the area and discovered commodities.  We were able to survive on noodles and homemade spaghetti sauce, soups and mac and cheese for a couple weeks while we saved.  And then a friend bought an old book collections, my mother’s ring, and some other items from the shed.  It took every last penny we had plus borrowed another $100 from a couple friends – money we probably cannot pay back, but the house is cooled off again.  We’ll have to scrimp on groceries again next month to pay back some of it.  Thankfully the baby loves spaghetti and mac and cheese, and we can get fresh vegetables and fruit from the food banks.

All of that creates more running which stresses our gas budget.  Every trip to the food banks or commodities or WIC, which occurs several times a month, runs down our reserves.  But the food bank offerings have fast expiration dates and we don’t want to feed the baby anything after it expires, so we have to make repeat visits.  I was hoping to get some help with gas through the Kellogg’s Gas Card program (see my blog entry at http://dying-wishes.blogspot.com/search/label/Gas%20Cards).  But so far, no one has sent anything.  If you could please save up codes from the cereals listed and send them to me, it would help so much.

I was so worried but I also had so much hope at the new clinic.  The hope is completely gone now.  I was feeling a little better, but not now – I guess hope does that.  But that’s all loss now and I feel entirely hopeless.  If things get any worse, checking out is the only option.  I cannot imagine having my family watch my slow death of starving too death when I can no longer eat, cjokling on everything, living on a feeding tube they have to monitor, or having to visit me in a state run hospice center, then feeling guilty about my lack of care.  But I am not going to put anymore burden on my husband, bless his heart, he has enough to cope with having a three year old and an 80-year-old to care for, and a shrinking budget.

If you want to help, research for me to find groups who pay for Adult Make-a-Wishes (I’ll ask for the surgery and accommodations), or groups and organizations that are willing to pay for such things for an adult in my position.  I need to get the surgery scheduled as soon as possible, or as it advances I’ll be refused due to the hardening of tissues in my upper stomach, and irritation to the throat where the tumor is invading the lining soon to enter my lung.