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.    

  

Guilt Over Sharing

On another blog site that I frequent when I can, a writer commented that her husband complained about her illness and her writing about it on blogs.  She said she feels guilty because many people are worse off than she.  I responded to her that I do not feel guilty about that, although I do feel compassionate towards other people with illness and who are unfortunate, maybe even more so than I - and try to share what little I have with them when I can.  I only feel guilty about being so close to dying and the cost of dying.  It’s taking resources from the already thinly stretched financials of my family, and that makes me feel guilty.  Spending money on my own medications when we need it for food and job-hunting gas, that makes me feel guilty.  Sometimes I lie to my husband and skip my pain refills just so we can buy fresh bananas and oranges, or some meat for dinner.  I know my husband would go without eating to make sure I was taken care of, so I feel guilty about lying to him.  Sometimes I stretch a doctor appointment to several weeks away instead two weeks, just to save gas for job-hunting.  Sometimes, when he’s out job-hunting, I turn off the little a/c unit in our room and endure the heat to the point of sickness, just to save a few bucks on the electric.  I feel guilty about it because I am sick when he gets home and he doesn’t know why.  I just blame it on the cancer.  

The girl on the blog also commented that her husband doesn’t always believe how much her illness impacts her own life.  If she says she is sick all the time, misses work too much, or just stays in bed, hr makes her feel guilty.  She goes on to mention that hubby has been unemployed for a long time while she has been managing her illness and trying to work, too.  As the only earner in the household doubling up her money with his unemployment, it must be extremely hard.  I call him a heartless husband.  Thankfully, I have an understanding husband who also experiences pain on an almost daily level.  He has a permanently injured rotator cuff from his days of jujitsu competitions and heavy ironwork that made it worse.  So, he understands my difficult moments, like today!  I was fell out of bed to the floor.  My muscles had just weakened so much, that when I attempted to roll over, put my feet upon the floor, and stand up, I simply fell into the floor.  There I was, stuck between the bed and the dresser, about a two-foot walking space in that small 10 x 9 room we live in.  I could not reach the dresser top to pull myself up, and I could not get a firm hold on the bed edge.  I tried rolling myself over but there was not enough room.  I struggled for minutes, then laid there exhausted.  I was too tired to even call for help.  After a couple minutes, my almost three-year old (three in Sept. 2011) leans over the edge of the bed and asks me for his “blankey” which happened to fall off the bed with me.  I laughed.  Part of my movement problem was due to him and his zealous night time movements which confined me to limited stretching space while I slept on several inches of bed beside him.  He was sleeping with us because he is sick with the flu and throwing up all night.  I kept him close to monitor his fever, and my husband, who could of slept in another room, remained with us because I needed help moving the baby back and forth, with wet rags for his head, and vomit clean up off and on throughout the night.  With the noisy a/c unit, he cannot hear me in the other room.  (Have I mentioned that my husband has a hearing impairment?)  When the baby shares our tiny full bed it’s killer for both of us.  My arthritis makes my joints so sore I can barely move.  After a night with the baby beside me it’s almost impossible to move.  Luckily, mu husband checked in on us and helped me up.

We noticed the baby’s illness yesterday, when we went to the new clinic to pick up my new prescriptions.  The baby went with us, of course, since we cannot afford luxuries like babysitters.  He seemed fine but his appetite had been diminished for a couple days.  I wrote it off to the heat.  We took him to the cafeteria first, because he refused to eat breakfast when he first woke up.  I had a slice of leftover pizza wrapped in Saran wrap in my purse.  I picked a table in the corner of the cafeteria for our seating, while my husband bought a large ice tea for us to share.  The baby decided he wanted to go with “papa” to get the tea.  While they stood in line to pay, the baby puked on his shoulder.  I witnessed it and hurried over with napkins to clean it up.  It was a small amount, so we contributed to the baby’s acid stomach he gets when he doesn’t eat regularly.  We all sat down and baby sipped on his juice cup, tea, and ate a bite of pizza, then he threw up again, and again.  Now, I knew it wasn’t acid, but more likely a flu or stomach bug.  The last thing I need is to catch the flu, but when you have a small child there is no prevention or separating yourself from exposure.  My husband carried and rocked him while I waited for the prescription.  Then we hurried home.  We spent the rest of the day alternating between wet rags on his head and body to cleaning up puke.  Thankfully, by evening, the baby was feeling a bit better but the fever was still there, lighter, but still there.  He slept with us and seems perfectly okay today. 

  

The girl on the other blog also commented that her husband said she should feel guilty for talking about problems on her blog.  I experience long bouts of insomnia.  Depending on who you ask, it’s caused by worrying about dying, my illness, the results of my illness on those I love, leaving those I love with too much to deal with, the meds I’m on, or the cancer itself.  Who knows?!  But I spend a lot of those insomniac moments writing in my blog.  It helps.  It sometimes helps me relax enough to at least try and sleep, or I come across something or someone that helps me.  I feel bad that she has to feel guilty when she shares just because her unemployed husband doesn’t like it. 

I think we all consider people who are worse off than we are.  It's called compassion.  The problem I come across is people who feel they have suffered more from the same type of cancer than I, therefore my suffering is not exaggerated enough to compare; or people who want to defend all those out there who are worse off than I.  I get many internet "haters" who feel it's their place to tell me to quit whining and get on with life because they know people who suffer more (and they do not say it in a comp[assionate way!).  If I had more life to get on with, then that might work.  I cannot help it that I am depressed over dying sooner than I ever imagined.  I cannot help being depressed over leaving my husband broken and alone, a widow at age 37, his very first marriage, left to take care of everyone's mourning, my dementia stricken father and our three-year old - all alone!  There is no family to help - most have died already.  He will be a widow, single father, jobless, and nearly homeless - and I'm depressed having to put him in this position.  I think I deserve the option of being depressed (duhb!).  He has so much to deal with now, and even more, and all alone, when I am gone.  There are no jobs to support the family.  There is no insurance to help with the baby's health.  Every penny must be managed carefully for food, gas and shelter.  Everything is truly pitiful, bleak and hopeless.  But I'll be damned if I'll feel guilty about sharing my life's problems with others, here on my blog, just because someone, somewhere is worst off than I am.  I have compassion in my heart for almost everyone, and I even share with them when I can - but guilt?  The only guilt I feel is leaving my poor hubby alone to deal with everything while I cut out early to the funeral urn.  The ones who should feel guilty are the internet “haters’ who find enjoyment in “anonymous” torment of those less fortunate just for the fun of it.  Cowards!  Sign your name to your obnoxious, exaggerated and untrue comments and take the feedback.  But their comments will not make me feel guilt.

Nexium coupons? Discounts? Please?

I am so sad.  I cannot believe how quickly I was just dropped from my current oncologist and the support there.  As soon as my insurance ran out, I was no longer a concern to them at all.  I did ask if there was some way I could use my oncologist for second opinions.  They said, “Sure,” but it’s at a cost of $95 cash per office call (which is a discount from the $235 it usually costs).  I just cannot afford that.  The people at my new location, Nevada Cancer Center, sound nice.  Since they treat people without insurance or money to pay for office calls and treatments, I just hope the nice lasts.  It’s bad enough having cancer without being stressed because cancer office workers treat you crappy.  I really need my prescriptions filled.  The pain from my fibromyalgia and multiple sclerosis is horrible.  I’ve been without pain killers, blood pressure medicine and anxiety medicine for several weeks now.  The County will not fill prescriptions written by doctors other than their own.  So, I have a stack of written prescriptions written by my last oncologist that are worthless.  The discount online drug center I found takes care of most medications but not pain killers or anxiety meds, and it takes a couple weeks to get your medications via snail mail.  I sent in the blood pressure scripts to them.  They are filling part of the order, but the rest is on back order and they do not know when it will be in again.  That sucks.  I knew it was too good to be true.  I just need to order way in advance next time, before I am running out.  I wish I had found them sooner.

I really need to fill my Nexium prescription for my stomach.  It’s crucial to the area where the cancer is due to my severe acid reflux.  I was on OTC Prilosec for five years, which worked great for a while, but then I developed a tolerance to it and it stopped working.  Zantac, Axcid and the others never worked for me.  I was put on Nexium about five years ago, and it works great.  But I’m completely out.  The Outreach prescriptions do not carry Nexium.  Too expensive I guess.  So, I’m looking for coupons to use or free one-time fills, so I can fill the prescription and pay for it myself until I get the County prescriptions free.  The County scripts could take a couple weeks since my intake appointment is the 16^th and it will be about two more weeks after that for my general GP appointment.  At the other cancer center, my oncologist wrote all my prescriptions.  But at County they want to keep it separate I guess.  That means many more trips to the doctor and sitting in more doctor offices for hours on end to get the same thing accomplished.  I wish my husband could find work so we could get back on an insurance program.

I think the biggest crime against people should be wasting the time of those who are dying.  If they know you are terminal, you should not have to wait hours to see a doctor or stand in line to receive benefits or help.  It’s just awful.

If you have or come across a coupon, discount or free script fill, please send it to me at Elaine Swe, P.O. Box 363323, North Las Vegas, Nevada 89036.

My Favorite Marine mother poem

My very favorite poem is excerpted from "Letters" published in the book "The Warrior" copyright Frances Richey 2008. I recommend - buy the book, it will make you cry.

LETTERS
Last Mother's Day, when he was incommunicado, nothing came.
Three days later, a message in my box; a package, the mail room closed.
I went out into the lobby, banged my fist against the desk.
When they gave it to me, I clutched it to my chest, sobbing like an animal.
I spoke to no one, did not apologize.
I didn't care about the gift.
It was the note I wanted, the salt from his hand, the words.

I believe every Marine mother feels this with each and every letter from their child.

New Doctors, Next Steps

My husband went to the interview for the job.  The interviewer said he really liked him and was pleased with his answers to the questions and his experience.  He said he going to have the restaurant manager call him in for a second interview the following week.  No one called. My husband checked back in with them and was told the position had been filled.  This seems to be the standard lately.  If we do get an interview, we do not get a call back.  Later when we check out the place, we usually see a bunch of young girls working it.

I'm really fighting the depression.  I am thankful for those of you that have helped during this awful time in my life.  If it were not for you, I would not be here.  I feel an obligation to hold on because the few of you who helped made such a wonderful gesture to me.  You helped a stranger for no reason other than you wanted to.  So, I'm hanging on - for you - and for my Marine son - a few more weeks, maybe months if I'm lucky enough. 

My Marine son, my baby darling, will have additional leave saved up again by October.  He plans to spend it with me - and I look forward to seeing him again, so very much.  All the help from my readers and followers have gotten me this far, and I'm hoping you'll get me through to October even though it seems so far away. 

I have gained back a little weight which is good.  Almost ten pounds.  I'll need it if I plan to continue with the last three chemo treatments.  I'm going to talk to the new doctors about continuing the treatments, and hope they will allow someone who is indigent to be treated with those terrible and expensive drugs.  The chemo drugs are about $60,000 and the follow up shot for white cell development is another $7,000 - plus anti-nausea medications, pain meds, etc.  It's about $100,000 a month.  If my potassium bottoms out again, it will include hospital stays to stabilize me which cost $12,000 last time.  I've been told by others on county aid that the cancer center will not give expensive treatments without insurance.  If that's the case, my doctor told me the little time I managed to acquire will be lost quickly.  I'll be back to just a few months to live instead of an additional six months or so.  I hate to think I wasted being sick those two months for nothing.

We're so broke.  I have no reason to get up and move around in the mornings, so I just stay in bed all day.  It's probably why I gained back some weight.  We were squeezing out a few dollars twice a month to go to the local public pool in the evenings, as an outing for the baby because it has a waterpark inside, and to cool off.  We only have a swamp cooler for most of our house temperature control.  We had a small a/c unit in our bedroom, but when the humidity became so high, we ran it a lot to keep the baby cool enough, and it finally quit on us.  Thankfully, this week is dry heat, and even though it's 103 degrees in the daytime and 80 degrees at night, it's not too bad.  The movie theaters use to allow free admission for family summer event time, but they changed it and say they are now going to charge a $1 per person.  We went there a few times because it was free and because it was air conditioned.  One theater has a free water park for toddlers nearby, so we'd go to the theater and then to the water park and let the baby play for a while.  But we cannot afford the theater or the gas to drive there, because it's all the way across town.

We're conserving our gas for possible job interviews.  My husband, bless his heart, goes out to distribute flyers in the heat.  It's usually about one day a week for a couple hours, but at least it pays the gas.  We had to break down and buy another used stroller at the thrift store.  The one we had broke a wheel.  We hated wasting the gas to look for one, but we had no choice.  If I have to go to the store or anywhere while my husband is at a job interview or doing the flyers, I need a stroller because I cannot carry the baby or his supplies.

I have my first appointment with the new doctors on Tuesday, August 16.  It was the closest appointment they could give me.  It will be four weeks since my last doctor appointment by the time it comes up.  They tell me the first appointment is just an intake session.  It will last about 90 minutes.  I was also told to be prepared to wait a while in the waiting room, because appointments run over a lot.  Wonderful!  Just push the gun closer.  I feel like crap all the time and can barely get energy to get out of bed, and now I get to sit all day waiting for an assessment before a doctor can be assigned to me.  I wonder how long after that before I get an appointment to actual be a patient for a doctor.  My cancer is exceedingly rare and my last oncologist said I need to get surgery to remove what is left of the tumor.  But the only qualified surgeons for that type of intensive surgery are in California at UCLA.  It's extremely doubtful, highly unlikely, mostly improbable that Nevada will pay for me to go out of state for surgery.  The surgeons here are not experienced in this type of soft tissue surgery, so I more than likely will not be able to have the surgery.  That means I just wait until the cancer begins to spread again, or the tumor starts to grow again, and then that's it.

I can't write anymore.  I'm going to try to sleep.  Another problem I've been experiencing lately has been insomnia.  I lay in bed for days on end and just cannot sleep.  I'm getting about three hours of sleep per two to three days.  I just lay there and worry and worry about how to take care of everything for my husband and baby.  I get calls from a counsellor for suicide prevention, but all she can offer is "Stop worrying and take care of yourself first."  That's easy to say and hard to do.  She tells me to use my support system of family and friends.  She is useless.  I have no friends.  Just prior to my diagnosis, we moved away from my friends in order to provide care for my mother who was dying and my father who has dementia.  My family all lives out of state and out of town, to far away to help.  Everything ends up on my husband's shoulders as he takes care of the baby and my father and the household chores and cleaning - all alone, and tries to job hunt on the side.  It's just such a losing battle.  Every day is so hard.  We have nothing to look forward to except time with the baby.  That's been enough to keep me going, but I am just so, so tired and depressed.