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.