Getting Darker and Darker

Still no jobs in sight.  Ask anyone.  We’ve been living on unemployment for two years now, and after 398 job applications which netted only 5 interviews, and one part-time, temporary 3 month position – hope has completely faded away for us.  My husband’s unemployment ends June 30^th.  Then we have exactly zero income.  My health insurance coverage also ends July 31^st.  Then I have zero health coverage.  

Next:  Thanks very much to my online friend who sent me a beautiful head scarf to cover my patchy hair head.  The scarf is so much cooler than the hot wig for summer.   Also thanks to Natalia – I used your donation to buy more diapers yesterday.  I know you wanted me to get something for myself, but that would be selfish when the baby needs personal items more than I do.  Thank you both soooo very much.

My husband, dear man, struggles daily with depression.  It’s not enough that his wife is dying and he’ll be left alone, a widow, to care for a two-year-old and my father with dementia.  He also worries constantly about not being able to provide for me in my last days and provide for the babies needs.  He cried a couple nights ago because he wanted to take me to a movie and we couldn’t even afford the discount theater with seats for $2.  We are so desperate for work that he continues to apply for anything and everything – even though we know most of it is just a waste of time – like the Plaza Hotel Job Fair.  He went to the Plaza Hotel job fair, that first day.  WHAT A JOKE?!!  We knew to apply online first.  We did.  But when the window opened for appointment times, the website crashed and no appointment was given.  We tried repeatedly to get back into the website for 12 hours.  My husband decided to appear in person anyway, expecting that everyone had the same problem and they would probably hand out interview numbers at the Job Fair site.  After a four hour wait, he was told to go home unless he had a scheduled interview.  He said thousands showed up, and most were sent home.  We heard the Silverton was also looking for a few workers (37 positions).  But it’s our understanding that if you ever had a bankruptcy, poor credit or suffered a foreclosure during the thieving bank-mortgage bail outs, then they will not hire you.  They screen out lowlifes that can’t pay their bills, no matter what the reason might be.

Our desperation for income has become an emergency.  My husband had me go through all my card stalk for business cards and print up something he could hand out for any type of work, door-to-door or car-to-car.  I printed up 200 cards on the computer and he handed them out in parking lots for the past two days.  I also going to print up the same thing on just paper and cut it out, since I’m out of cards now.  The cards and a Craig’s List ad read: 

NEED WORK!    ANYTHING & EVERYTHING???   GREAT PRICES!    Will do Lawns, Mowing, Weeding, Gardening, Light Moving, Heavy Moving by Appt., Room-to-Room Furniture Moving, General Maintenance, Clear Lots, Clean Out Foreclosed Homes, Clean out Closets or Storage Units or Garages, Housecleaning, Window Washing, Pet & Cage Cleaning, Change Swamp Cooler Pads and Water Sprayer, Replace Roof Shingles, Haul Off Garbage or Charitable Donations – Just about ANYTHING!!!  Two-Man Team.  Quick Work.  Call for FREE price quotes (quotes can vary after work is identified).

I didn’t include the phone number here because this is a blog that reaches everywhere and the work can only be done locally, in Southern Nevada.  But if you live in Southern Nevada and have some work you can let my husband do for you, just contact us by email ( sweet1things@sbcglobal.net ) and we’ll give you the phone number.  We’ve only had one call so far.  It was a midnight call from a girl wanting to move out of her boyfriend’s place right then.  My husband has a man, who helps with heavy moving and such, but he was not available in the middle of the night, plus she called us a back a little later and said, nevermind because they had resolved their issues.

I’m also going to try making up flyers using minimal paper, maybe cut into fours, to place on fences and doors.  We are just so desperate.

I received a Medicaid Card for the baby and $73 in Food Stamps for me and the baby.  I also applied for a Medicaid Card for medical for myself.  I’m told it takes about a month to approve.  I also re-applied for SSI, but it doesn’t sound like I’ll qualify.  I don’t understand why.  They just tell me it’s because my husband is young enough to work, and not disabled.  He may be young enough and strong enough to work – but where’s the damn work.  We’d prefer work to scrimping and starving!

I have six radiation treatments left and four chemotherapy months.  I’m having a hard time getting the radiations completed because the machine breaks down all the time.  I cannot sit in their office for three hours for a 15-minute appointment.  Sitting for so long on those hard chairs hurts so much.  I imagine at the rate their machine breaks it will take weeks to complete just my last few sessions.  It’s a shame that they waste the time of the dying by not keeping their machine in good working condition.  It looks like I’ll also be ending the chemotherapy without completing the last four months.  My body doesn’t want to handle the chemo without completely plunging my potassium to critical levels.  When your potassium hits a critical level, you become a walking heart attack.  My body has always had a hard time keeping potassium levels normal, and it plunged so low this last time that it put me in the hospital.  My only alternatives are to spend one to weeks a month in the hospital while receiving the chemo and potassium via IVs, or discontinue them and hope it was enough.  The doctor recommended discontinuing them because he feels I will be put in danger levels on the potassium too much which is bad for my general heart health.  So, maybe, no more chemo.  At the end of July I receive another MRI/CAT/PET Scan and EUS to see how much the chemo-radiation helped or did not help.  I don’t even know whether being so sick and damage my body with these chemicals was even worth it.  It’s possible they had no effect at all.  The doctors also mentioned the surgery again.  After talking to them, they seem to advise against it, and I agree.  The surgery, due to the size of my tumor, is quite risky.  I am told I would probably survive the surgery itself, but have a high rate of dying due to infection and leakage afterwards.  But if I decide for the surgery in addition to these treatments, I have to get it before July 31^st when my insurance runs out so I have the option of UCLA.  If I have to get the surgery local, it means my chances of survival are radically less, almost to the point of a huge gamble.  Bleak, bleak and bleaker!  No surgery and the cancer spread to my organs and kill me quickly, or surgery and probably die on the table or within a week or two after … what a lovely selection of choices.

I think it’s nearly time to check out.  Why continue to be a burden on my family’s already stretched finances when I have nothing personal to offer and help out?

 

Hardest few weeks of my life

I spend last week in the hospital.  It seems my potassium level fell to a critical point which can cause an instant heart attack.  I was sent to the emergency room on Friday night.  Even though the doctor sent my paperwork ahead, there were no beds available.  And being on the verge of an instant heart attack does not put you on the immediate list for a bed, because broken hips, heart attacks already happening, car accidents, etc., trumps an “almost anything..”  And I truly understand and do not disparage that.  I was there for half hour before being evaluated, and then another four hours before I was taken into the back for ER evaluation seeking a bed.  I spent most of that four hours lying on the benches in the waiting room, walking to the back for tests, then back to the waiting room, then sleeping and puking intermittently.  It was so cold in the ER waiting area I had to ask for a blanket.

When I finally got good and asleep for a few minutes between the puking, I was waked up because they finally had a bed available in the ER, for which I was so grateful.  I was finally hooked up to several IVs through my Smart Port and again told my potassium was critically low.  I just said, “Duh, that’s why I’m here.”  The ER doctors, three in all, plus a slew of other interns, kept coming by and asking the same damn questions over and over again, and asking me why I let my potassium get so low – like it was my fault or I could have prevented it.  I’m a pretty easy going person, but I finally blew my stack the tenth time someone asked me the same damn questions and was again asked why “I let it “ get so low.  I said, “Is everyone here just retarded or illiterate or just to lazy to note and/or read the answers I already gave.”  I then sat up in the bed and said real loud, “Hey, every body.  I’m dying of cancer.  I’m terminal.  I am puking my guts out and sick because the doctors made me this way with chemo and radiation. So, if your friends are in the bathroom, on a lunch break, or changing shifts, can you please fill them in or write it REAL BIG on my chart?  Cause ten times of repeating this to different people is getting frigging ridiculous.  PS: I DID NOT cause this to myself.”  A guy in the bed next to me said a loud “Amen.”  Several EMTs laughed.  And one pompous doctor came over and told me to calm down or they would have to give me something.  That delighted me.  I said, “Really!  Something to knock me out so I don’t have to answer anymore stupid shit.  Something, so you would actually have to note my chart to know what you’re treating?  Yay!  I hit the jackpot!”  He didn’t say anything else.  He just walked off.

Thankfully a few of the interns have a sense of humor.  They were still incredibly nice to me.  After four more hours in an ER bed I was taken upstairs to and admitted to a regular bed.  Okay … that’s a stretch.  The only beds available were in the Children’s Ward.  I shared the room with another oncology patient.  After (I don’t know how many) dozens of IVs, four bags of potassium, four bags of magnesium, and five horse size (*really*) potassium pills, and 12 hours of diarrhea and vomiting, I finally got a few hours of solid sleep.  It took 24 hours before I could drink half a glass of liquid and eat so semi-solids.

The way potassium works is a bit of a vicious cycle.  If you vomit too much or have vomiting and diarrhea, your potassium can drop low.  If vomiting and diarrhea without any fluid replacement goes on for very long, then potassium levels can become critical.  If potassium gets low it can cause more vomiting.  So you vomit, then your potassium gets low, which causes you to vomit more, and then you are caught in this cycle that can only end with potassium replacement or death.  Every time I vomit from the treatments I worry about this vomit-diarrhea-low-potassium cycle starting again.

Now I’m home again, and counting the days off until nausea medication runs out (that’s today), and my husband’s last source of income stops (that’s next week), and our insurance runs out (that’s the 30^th), and I sit here and just wait to dry up and die.

We thought we had finally come across a company that would donate my nauseas meds that the insurance company will only cover 7 days a month.  But there was a mess up there, too.  That company only covers 7 days as well.  I wrote them a letter when I was finally strong enough to sit up asking why they promised the meds and then just gave me the same stupid ineffective, not enough amount that I had already been approved for.  They didn’t answer, of course.

Now my doctors (aka especially my financial advisor and mental health counselor) want me to apply for SSI again, and Welfare again, because our income is changing from almost nothing to no income.  I already sat at Clark County Social Services for four hours to get an appointment to come back for an appointment, and then a second time I was there for two hours just to have them tell me that since my income was changing I had to go to State Welfare instead.  I went to welfare that approved me for $73 in food stamps and a Medicaid card for the baby.  Really - $73 in food a month.  I can really celebrate now with almost $17 a week in food and drink.  I have to fill all the paperwork out again and take it with the photocopies back to welfare after I again apply for SSI again just to apply for a Medicaid card.  SSI turned me down, which is the general practice and then they tell you to contest it, but chances are it will not get approved for 5-6 months which someone else told me could be a year or longer.  I’ll be dead by then, so why are they wasting my time?

People tell me to work the system.  Go here for commodities, go here for food hand outs, go here, go there, wait in line.  I am so sick.  Don’t you understand?  I cannot wait in line.  I can barely walk to and from the car for treatments.  Sitting for hours on metal chairs attached to the floors, deliberately made to be uncomfortable so you don’t sleep in them, causes me such pain and discomfort that I am sicker when I get home.  Some times I am sicker for days after one outing. So people tell me to send my husband.  That means he take our son with seizures with him, or I try to watch the baby while I am sick.  It just does not work out.  We tried.  Last visit to welfare the baby was edgy, coming down with something, and fussy.  He was banging his stroller real hard, rocking it hard, and mad about being in it for two hours.  You can’t blame him.  The guard came over and asked us to take him outside or calm him down.  I was bending over shushing him and trying to get him a bottle when he had his first seizure in six months.  This of course caused a commotion.  My husband had to be sure the guard did not call an ambulance (which is unnecessary and unaffordable), and explain that he has been seen by numerous doctors about it while I soothed the baby and searched the diaper bag for our proof about his seizures.  The stress just made me sicker.  If there was a better system, the poor baby would not have to be aggravated by sitting in these social service buildings for hours on end, nor would I.  He never would have had a seizure if it had not been for all the waiting.

But none of that really matters anymore.  The clinic caring for my cancer is overbooked and overworked.  My doctors and the staff remember me but cannot remember my specific treatments or problems between visits and confuse the things we discussed about my options and treatments.  And like most clinics, they are there weekdays 9-5.  On weekends, if you are sick, you get some foreign accent on-call doctor you can barely understand, who does not have your records with them.  One doctor got short with me because I could not understand what she was saying, which caused her to have to take her phone off speaker-phone and pull her car over to treat me.  I was vomiting severely and she prescribed Milk of Magnesia and see my doctor Monday.  *Oh Please – just push the gun closer *  What a colossal waste of time!

Life is so menial now.  Yesterday we were down to three diapers and no funds to buy more.  We went through the house looking for teeshirts, small blankets, old receiving blankets, anything we could use for a diaper – and are trying to go super force forward with potty training (without sending the baby into seizures).  Great fun, huh?  I called everyone I know and two people brought us a small bag of diapers.  And we were very grateful.  My husband made up a bunch of small handwritten flyers to mow lawns, weed, move things, clean out sheds, garages, storage room and lockers, wash cars, anything, so we can work to earn diapers, a car payment, and one cell phone pay-as-u-go payment (Boost).  My Marine son is helping as best he can financially.  But being so new, his checks are not that much and he has bills of his own.  Plus, he has difficulty getting to the post office during the hours they are open - and is currently working 16 hour days plus weekends.  But he tries so hard for me.  He is going to send us a big box of diapers each month, starting next month, and he sends me Boost cards when he can.  I’m doing what I can, too.  I have to do something, some type of work.  I’m applying places and trying not to look sick when I do.  I'm going door-to-door to small businesses.  I don’t tell them I’m sick, and I tell them I am desperate, and I will work under the table, for less than minimum, for just tips, anything because I have a baby to feed.  I got one job, $5 an hour for two days, but that was during thr puking cycle just before the hospital and I quickly lost that.  But I'll try again this week,  If I get work, I will work as long as I can until they let me go when they realize how sick I am.  We have to do whatever now.  My husband is doing the same thing.  Begging door-to-door for work.  But sadly, so are hundreds of other people and hope is just gone.

My husband, Marine son and I have discussed it.  I have one more appointment I’m trying to set up with both my radiation and chemo doctor together.  My family and I, together, have decided to end the treatments and let the cancer take its course with just the barest of palliative care.  Sadly, the clinic and doctors are too overworked to help me.  There is not enough personal care placed on dying patients.  And I don’t have the insurance to take me somewhere better.  I’m sure treatment and care will suffer even more now that I’ll be on Medicaid.  So, I guess the rest of my journal will just be the downward spiral until cancer ends my life or I end it myself.  The next low potassium cycle should do me in.  I’m too depressed to even care anymore.  My family is getting depressed too.

Too Sick to Post!

Sorry but I've just been too sick to post.  Hope to post something later.  Seriously debating whether to continue chemo or not, or just let things go.