Easter - Bleak, Sad, Weary but with some Smiles

Our greatest problem right now is income.  We have absolutely none.  We are working on re-establishing the Unemployment.  It may take a few weeks, and that’s if we are eligible depending on what the casino writes down as the reason for his termination.  Even if all goes well and the unemployment starts up again on a week or two, the few weeks with no income at all is causing us to sink.  The little income we had at least covered my Cobra payments, co-pays, van payment and utilities.  We struggled for groceries and diapers, but we squeaked by week to week.  The two weeks without income has made everything late and offers nothing to help us catch up.  My husband is very well trained and exceptionally experienced in food service as a gourmet back waiter, food server, buffet food server, gourmet food server, and gourmet busser.  We apply for every single opening at every single restaurant and casino we see or hear about.  The openings we miss are in the local neighborhoods – like your local Applebee’s, I-Hop, diners, and privately owned restaurants that may place a Help Wanted banner in the window.  We live in North Las Vegas.  If you see any restaurants that are looking for food servers (waiters-waitresses) in you area – North Las Vegas, Las Vegas, Henderson, Sun City, etc., please let us know.  Even if unemployment is re-started, we only have about five weeks left on it.

Since my husband lost his job, we are almost penniless – literally.  We cashed in our coins - $60.  We scavenged the cars for change - $2.10.  We cashed in all the tin cans - $38.  And it’s not enough for this month’s bills.  We have a few things left we could sell.  Big items we haven’t been able to move yet.  We have a pool table, valued at $1700, with tons of accessories, valued at $300, at our foreclosing home in Pahrump.  We would happily part with it for $350.  You’d have to go to Pahrump to pick it up.  I also have a beautiful hard wood kitchen table with six chairs, two captain chairs and four regular.  It is an easy slide table with an extension leaf – removal and adding the leaf is so easy a single person can do.  It was purchased several years ago for $600.  We’ll let it go for $150.  It’s in Pahrump, but my husband could borrow a truck and bring it to Vegas for someone who buys it – cash up front.  I also have a very expensive 24x36 inch lighted, adjustable artist table.  It was shipped to me from New York, used in my magazine business several years ago for cut and paste layouts.  It cost $1800.  Will let it go for $300.  It’s in Pahrump, too.  I plan to make a trip to Pahrump the weekend of May 7 for the last of our stuff, since the house is going back to the bank very soon.  I hope I’m well enough for the trip and packing.  Otherwise, everything will be hauled to the dump by the foreclosure people, including my keepsakes like the baby’s booties and my wedding pictures.  Pray for my strength.  I really want some of these items, so I can include them in my genealogy boxes for my children. And we really need the money to pay our bills for another month.  If we can survive this month, maybe my husband’s unemployment will start by then or he’ll have another job.

My Marine son leaves Tuesday for Cherry Point, NC.  We gave him our second vehicle, 2007 Dodge 1500 truck, because it has payments and we were unable to sell it.  He will drive it back to his new base.  We cannot afford the payments anymore and he needs a vehicle.  We bought it when my credit rating was 800, so the payments and interest rate are very low for him.  It’s much lower than anything he could buy on new credit at 19 years of age.  Plus, we bought the truck for such a deal right when gas prices went so high the first time.  It was considered used, because it had 8,000 miles on it, but actually that was practically new.  We got it for thousands below blue book.  He sold his car, which was an old Kia that he got when he graduated.  He gave us that money because he planned to use it for a down payment on whatever vehicle he bought.  It was $1000.  That really helped.  We paid two Cobra payments with it, so my health insurance is set for two more months, plus we bought a big box of diapers.  We kept one vehicle – the van.  We cannot be without a car due to our two-year-old’s seizures.  We need it for those emergency trips to the hospital when he seizes, and for my daily treatments coming up, and for my husband to job hunt.  No vehicle at all means no way to get or keep a job and no emergency transport for the baby.  All we need to do is cover the van payment and utilities for this month, and a few groceries.  I am so depressed and weary.  For the first time, I am able to type this without crying.  I’m just at the point where my tears are dry and I feel no emotion at all anymore.  Maybe that’s better.

We had to postpone my chemo-rad treatments.  They were supposed to start April 25^th.  However, we ran into a slew of problems.  My Smart Port implant looks like it is infected.  We may have to wait until the infection clears up, maybe even remove it if the infection gets worse.  Plus, radiation is having difficulty lining up my procedure lines.  I’ve had two sets of x-rays, each one delaying the treatments a few more days, and still have to get another set before we can begin.  I’m not sure what the exact problem seems to be, and I’m at a point where I just don’t really care so I don’t bother asking questions anymore.  My attitude seems to be, “Just kill me and get it over with.”  I know that’s not good, but again, I don’t seem to care.  Plus, it seems like the Cancer Clinic is over loaded with patients and appointments.  Scheduling is a nightmare that changes constantly.

On top of all that, our court date for my husband’s Legal Guardianship of the baby is going to be April 26^th.  I told the chemo-rad schedulers absolutely no treatments until after the court date.  I do not want to appear sick in court, or give the courts any excuse to not grant the Guardianship.  The bad news seems to continue.  If we receive the Guardianship papers with no problems, I will see the first bright spot on the horizon since all this started.  PLEASE!  I need a one little ray of sunshine or hope!  Please keep us in your prayers and hearts as we go to court Tuesday.  My husband, my father with dementia, and my Marine son are the only ones the baby has left.  My father is having trouble with a heart valve, and is too old and not healthy enough to have further surgery.  The doctors say he won’t be around much longer.  My son is stationed all the way across the United States for at least another two to three years. So, my husband is it – the only one left to take care of our darling sweet baby.  With the Guardianship, if it goes through quickly enough, we can add the baby to last couple months of Cobra so he has insurance, too.  It’s really needed because the poor thing has really bad teeth already.  His tiny baby teeth have tons of cavities eating away at the gum lines.  The problem is partially hereditary due to his mother and father’s bad dental problems and partially due to the mother’s drug use during the pregnancy.  We don’t want his little mouth to be hurting him.  I know the teeth do not have roots, but they still need to be taken care of.  My Marine son had baby caps on his teeth when he was four, so I know the dentist can help the teeth.

I guess my suicidal demeanor came through at my chemo class.  I visited the financial officer to explain that my insurance will be running out before my chemo finishes.  In tears and between sobs, I explained my husband’s job loss, the end of my Cobra, the care of the baby, and begged them to continue the treatments when I am no longer able to pay.  They were quite wonderful about it.  The financial officer counseled me about options and gave me a ton of paperwork, which depressed me further.  I have to be the one who fills out the paperwork and gathers the necessary proof, but I’m just too weary.  They assigned me a Social Worker.  The Social Worker called me and offered to help.  She actually offered real help and not just lip service.  I have been so overwhelmed by everything and so depressed that I simply am not functional.  Add to that the extreme weariness and lack of motivation caused by the depression and this sick body – and well, it just stops you in your tracks.  I was spending all day, every day, lying in bed.  I was ignoring nutrition, barely eating, crying all the time, and extremely stressed over all the things that need to be finished before my son leaves again, and for the household before I die.  The crying has stopped, and I guess that means things are worse, because sometimes I no longer care at all about anything.

The hardest part is all the paperwork.  In order to apply for anything, get help, or even pay bills, you need the energy to get the paperwork together.  I simply do not have it.  I struggle and plan and have good intentions, because I know how very much I need to complete all the forms for help – but I cannot get enough energy to get it done.  The Social Worker has been helpful to a degree.  Anything helps at this point and is greatly appreciated by me.  On her advice, I went ahead and applied for Social Security Disability online, on the grounds that I have a disease that will cause my imminent death.  The paperwork was volumes.  I still have to drop part of the print outs off at the Social Security Office.  Chances are it will not get approved before I die but supposedly it sets the background for approval for other forms of help.  She also wants me to fill out paperwork for SSI, welfare, and Cobra payment assistance.  I was instructed to drink Boost or Ensure three to four times a day to keep up my calories and weight.  But the cost is $3 a bottle, and that’s $12 a day, which is over $300 a month.  I guess that’s fine if the rest of my family does not plan to eat, and if that’s all I eat.  The Social Worker gave me a connection that will provide the Ensure.  I not sure yet how much they can provide, but I’ll find out this week.  That really helped.  That’s the sort of thing I need, solutions to the problems, not lip service.  I know all the alternatives and options people offer – like stand on the corner and beg for money, or get a part time job, or work at home, or get welfare.  They obviously have no experience with this type of cancer or they would know that I am unable to do any of that.  And my husband is trying so hard.  He applies for every job out there – and I mean every job, even McDonald’s and dishwashing.  He is also struggling with extreme depression.  He cries a lot and is having difficulty functioning as well.  The Social Worker is really trying to help.  She also said they may be able to get me a grant that will make one van payment for me.  It will take a month or two if we are approved.  I told her the van is paid up so far, and with that one payment we can probably hold out four months before they repossess it.  The Social Worker will also set up a welfare appointment for me so I don’t have to sit too long in the offices like I did for the Social Security replacement card.

Today’s Easter.  I pushed myself to get out of bed for the baby.  We put together a little basket for him from items we bought at Saver’s.  I colored a dozen eggs, and my Marine son hid them in the yard.  My son used his camera to take photos of the baby finding the eggs, and we took photos of everyone together.  A couple of my Marine son’s friends brought over several bags of groceries and they are cooking dinner for us today.  A small sliced ham, mashed potatoes, baked beans, deviled eggs (if the baby doesn’t crush them too much) and garlic bread.  They also brought me some instant breakfast mix, milk and cottage cheese.  It was so sweet of them.  Anyone who trashed today’s teenagers should meet my son’s friends.  They are such good boys.  One more small bit of good news – the same paralegal who did our Legal Guardianship papers, also gave me paperwork for my Marine son’s adoption.  Her office took up a collection and paid the filing fees for the adoption.  They called us Friday to pick up the papers.  That was a nice Easter surprise. Today is not as bleak as others have been.  I guess that’s good. 

Slow Death – or Suicide?

I guess for now I’ve chosen a slow death that I can end my own way at any time with suicide.  I’ve set my treatments with radiation, 28 days straight, combined with chemotherapy every two weeks for a four-day stretch for several months.  I go to the clinic every day at noon for the radiation, and I go to the clinic chemo room the first day every other week for four hours of pushed Smart Port IV with antibiotics and nausea medications, followed by a chemo drip plugged into me for four continuous days with a fanny pack around my waist to haul it.  I get a short break between the huge chemo bags every other week.  They tell me once the radiation begins to kill the tumor and surrounding tissues including the skin it goes through, there will be a great deal of non-stop pain that will last for some time - like a burn or deep bruise that does not heal, plus nausea.  The chemo starts out mild and has an accumulative build up.  I may not have nausea or flu-like symptoms right away, plus you get that little rest in-between the treatments, but after the third week or so, the nausea becomes pretty intense and lasting along with joint pain, etc.  

With my lack of medicinal tolerance, they are pretty much guaranteeing I’ll get real sick on the chemo, sicker than most, and we may have to start and stop it several times as I get the nausea under control, or stop it completely if I cannot get control.  I’m not sure how much I’ll be able to tolerate it.  The ONLY good thing going into this, is my husband will be home to help me a little – but of course, that is due to a bad thing – the loss of his job and our total income. 

I’m applying for any help we can get, but there’s not a lot out there with all the government cuts.  I was told to get Boost or Ensure and drink three to four a day, but at $2-$3 a bottle, that’s like $10 a day or $300 a month.  My COBRA will not cover it.  They also said get a wig before chemo starts because I’ll be too tired to go after one later, and most insurances cover it.  I checked.  Mine does not. 

I’m wondering how I’m going to manage.  We now have no income which means we may lose our only vehicle, which is my husband’s only means for transportation for possible work or interviews or job hunting.  I figure we have about three months until the car is repossessed.  I’m wondering how I will manage the chemo and daily radiations without a car, or how I will manage any of this without a car. 

I really truly just want to die.  The cancer center social worker asked if I had a plan for dying.  Don’t we all?  I told her they didn’t have to worry until my Marine son leaves, after that no promises, but I didn’t tell them when he is leaving.  I’ll tolerate the treatments for a while, but I swear, if they lied to me, and I get much sicker than they said – it’s time to go.  I want quality with my baby and husband, not long days of puking and being sick and hubby cleaning up after me.  He has enough on his shoulders now.  I need to help him find another job, a day time one, so the baby can go to day care while he works.  After that, I think it’s time to cash out.

More bad news - I can't take anymore

How do you continue on when NOTHING good ever happens to you?  How do you break the most miserable losing streak in the world?  I do not know how to go forward when every step sets us back ten more.  I just do not know how to do this anymore … 

My husband lost his job.  Just like we were told, five days before his 90-day probation period would end, he was let go.  After he had already accepted this job at the end of January, other workers at the restaurant told him no one had passed probation in the past three years.  The restaurants unwritten (unspoken) policy is to hire on-call workers and then fire them or let them go before the 90-probation is passed, or just keep them on with one day a month work until they quit.  If new hires appear to be complainers who might protest the firing, they give them the one day a month until they go away.  If they are sweet and congenial like my husband, then they are just let go.  Now we have zero income, a baby to care for, a COBRA insurance company that is unreachable (more later in this post on that), a COBRA insurance payment increase to $1100 a month in July, and no way to cover or pay for anything medically or otherwise including our only transportation.

Everyone knows my Marine son is visiting me.  With my son's assistance, we finally made a decision about my cancer and treatment.  We decided upon Chemo + Radiation for the initial and maybe only treatment of this large five-inch around tumor blocking my throat.  If, and we are told it is a big IF, the treatments shrink the tumor and it does not metastasis fast, the treatments could lengthen my life to maybe a year.  In anticipation of that, I have also received a Smart-Port for the chemo induction and been tattooed with radiation markers.

The Smart-Port was supposed to be very simply out-patient surgery, not much pain, and quickly healed.  But, my NASTY BAD LUCK continues.  They had difficulty putting it in.  Something to do with my extra large carotid artery.  I guess the inner tubing is run down a vein right next to the carotid artery.  It took three times to get it in and a lot of digging around, and comments about how tight the fit was.  So much for simple out-patient painless insertion.  I was so sore when I got home, after the lidocaine wore off, and it throbbed all night, so there was no sleeping.  When I went back for the bandage change today, it appears that on top of all the pain, I had an allergic reaction to the bandaid used to cover it, which caused additional swelling, more tightness, more pain.  They sent me away with no further bandages so the red swollen skin could heal.  It's still tremendously sore, and I cannot touch the area around it but at least it no longer throbs from the swelling.  I just cannot catch a break.  This means more days before the pain leaves.

Then I'm also having problems with my COBRA insurance company.  It seems my providers are also having problems them.  This new problem makes me wonder if the insurance company - and it's a fairly big company - is going under, or being embezzled, or essentially on the edge of collapse.  I mean, why not?  With my F*CKED LUCK lately, why wouldn't my insurance company quit me for some stupid mismanagement problem on their part?  I (and my providers) call all day long for days on end, and we get busy signals.  Over and over the phone is just busy.  But if you are tenacious, after a few days, OF ALL DAY calling, and being placed on hold for up to an hour or more, you might get through.  When you get through, you either (1) get transferred to another number that hangs up, (2) get told they will look up the information you request and call you back (call back never happen), or (3) tell you they will look into it (also seems to never happen).  I have providers who cannot get a call back or answered phone, and they are not getting paid for my appointments, procedures, etc.  I do not have the energy to be on the phone all day, dialing and dialing and hoping to connect to fix this problem.  And I also need answers to some of my medical deductibles and coverage, but I cannot get them.  On top of all this, my insurance company has a group for before-you-need-it or preventive health care, who are bugging me by phone about my diabetes, which is the least of my worries.  They want to check in with me every three months about diabetic health care “only,” and not to discuss any other problems.  I told her, "Call back in three months, and waste some more of my time if I'm still alive."  Translation:  "Eat crap and die, I don't need your bullsh*t."  Poor customer service from my insurance provider is not something I can deal with right now, NOR CAN I STRESS OVER THEIR POSSIBLY GOING-UNDER, after I've paid my COBRA payments ahead two months to keep them from trying to drop me due to the cancer – which they attempted.

I was also sent to get a feeding tube put in my stomach incase I cannot swallow after the radiation swells the tumor before trying to shrink it.  Yah – more great news.  The doctor refused, due to the size of the tumor.  He only inserts via mouth then puncturing outward through the stomach.  He will not bypass the tumor to do it.  Now I have to go back and find a surgeon who goes in through the outer stomach wall, meaning it has to be done in the hospital, which means more co-pay with only 90% coverage.  If it is done as a procedure in a clinic type setting, as an out-patient, then no co-pay or deductible, but if I have to use a surgeon and be in a hospital, even as an out-patient, then it's going to cost me.  I hate it.  Nothing can be easy.

How much more before the universe takes one last huge crap on me and gets this over with?

Cancer Wigs and Boost?

 Does anyone know about using prescriptions for Boost or cancer wigs?  If the doctor writes a prescription, how is it presented for payment?  Can I use a Boost prescription at the pharmacy window to purchase Boost or must it be bought and refunded through insurance?  Same question about wigs - can they be purchased with the prescription or must I wait for reimbursement?

Mid-May 2011 - That's My Only Goal

I plan to or hope to live until mid-May 2011.  My Marine son is spending April with me.  He was given 30 days of emergency leave to spend with me.  I told him yesterday that when the dying gets closer, I will not be calling him to come back again, to be at my side, because I want him to remember me as I am now and not more feeble and awful looking.  I want to focus away from being sick as much as I can while he is here.  I want to make some last happy memories with him.  He understood and agreed that he would not be mad at me if I decide I do not want him at my side as I die.

My youngest brother, whom I mostly raised, is coming in May to get married.  They booked one of the cheap wedding chapels and will spend their honeymoon on bunkbeds at my house (that is, if I can find a couple cheap sets before they arrive, otherwise it will be mattresses on the floor).  (Maybe I can find a couple of cheap roll-away beds?)  They moved the wedding from Vancouver, Washington, to Las Vegas, when they found out I had cancer.  We had originally planned to all get in the van and share expenses to go to Washington, taking turns and driving straight through.  But my illness changed that.  I'm so glad I'll be able to see him one more time.  I raised him, he's my baby, too.  They are saving every nickel and dime to get here, and both of our families here are chipping in for gas instead of buying wedding gifts.  I'm so glad his bride was willing to sacrifice this for me. 

After that, I should be done.  The paperwork will be completed, my treatments will have started and I will know if there is any hope of extra time, and if there's not, I can let go.

My son is here

My Marine son is here visiting.  It's only been a couple days so far, but I'm already exhausted.  He hates seeing how much weight I've lost.  And he's going to my doctor appointments with me on Monday.  He tried to get me to eat some high calorie foods by taking me to I-HOP for breakfast one morning.  I ordered pancakes and a side of eggs.  All I could eat were the two eggs and a couple bites of pancake.  But it was nice to get out for a while.  Afterwards, he wanted to take me to meet a new girlfriend of his, but I was just too tired from going out already.  I spend about 80% of the day in bed now.  I just don't have any energy.  The doctor says it's due to poor nutrition which is normal for this disease.  I guess I need to speak with a nutritionist about getting some weight on powder of some type to go along with the Boost, Instant Breakfast and Ensure.  Maybe something with vitamins and minerals, etc.  Does anyone know of anything like that?

Internet Stalkers and Bullies

I guess the Internet stalking and bullying is a real problem.  I've gleaned a few myself.  It's sad that they have to hide behind anonymous names and emails to be a**holes and snarks.  They'll put down anything and rag about everything, in an effort to just be hurtful.  I use to try defending myself to them, but I've found that is useless.  It's useless because their comments are intended to be filled with misunderstandings, lies and crap just to illicit a response.  I don't need that.  So I will treat them as the "trolls" they are.  It's not like this is the first time someone has encountered their likes.  We all know them.  In person they are meek little sh*ts who could not stand face to face with anyone and admit their sneaking bullying lies.  But on the Internet, they post like a lion, spreading crap as they run away, under the titles of anonymous or some other stupid nomer.  I refuse to post or acknowledge negative comments in any way, and refuse to post comments that are directed to someone else's name.

Getting Ready to Make that Final Decision

I've been going through all the consults - surgeons, oncologists, chemo-radiologists, gamma-laser, etc.  Two more consults this past week.  Getting all the information like everyone recommended.  I wish the doctors would not be so morose each time they see me.  They all start out with a sad commentary, “Of course, you know your prognosis.  I’m guessing you are here to see me for ______.  I don’t know what I can tell you.  Depending on ______ and ______ and what your oncologist recommends after I give him my information, it looks like we’ll just have to wait and see.  But you survival rate is less than 20% if everything goes perfect, but you don’t look like a candidate for that, so it’s probably much less.”  It’s almost like they rehearse it.  They all say the same thing, over and over.

Today’s consult with another surgeon ended with, “You can get that surgery local.  I can do it.  It’s my specialty.  I do one a day.  But I think you should do the treatments, chemo-radiation first to shrink the tumor.  If the tumor responds to that, then we can maybe consider surgery.  But if the tumor does not respond, and only about 25% do respond, then I would not recommend surgery.  I will only do the surgery if I think it will lengthen your time.” 

Wow!  Well, let’s see what I have here.  The surgeon is reluctant to do the surgery.  It seems my tumor is very large compared to most that they see.  My oncologist recommended against the surgery and told me to opt just for chemo-rad treatments and no surgery.  The surgeon told me to do chemo-rad first, and then the surgery.  The surgeon recommended against gamma-laser surgery.  The gamma-surgeon recommends doing it.  Then, my oncologist discussed my case with the surgeon and he is now suggesting surgery alone and the surgeon seems willing to do that.  What is the truth here?!?  I cannot stand wishy-washy suggestions from a doctor.  Will each doctor tell me to do the treatment that places the most money at their facility or with their referral doctors?  Can I trust these decisions?

I just cannot take it anymore.  Deciding between death one way and another is just too depressing to deal with.  The surgeon even went so far as to say some people opt for the difficulty, pain and recovery of surgery just so they can continue eat until they die.  Gee, thanks for that!  He says I can die with a feeding tube to avoid the pain of eating, or deal with a recovery from surgery pain and eat regularly until I die.  Hmmm, now that’s a real choice.

So where does this leave me?  Monday, I make my final decisions.  I talk to the oncologist one more time.  Then choose.  Treatments, surgery, combo of both, gamma-laser, or suicide?  I’d really rather hear from past esophageal cancer patients who were in Stages 3-4, about how bad FU5 chemo-rad is, and how bad the esophageal surgery is where they remove your esophagus and tie your stomach up under your heart directly to your throat.  Anyone out there have some direct information for me on those?