Monday, February 28, 2011

UCLA Appointment Postponed

I just received a call from UCLA moving my consult from March 3 to March 7.  Now I have to reschedule someone to help with caretaking for my father.  But I'm hoping this works out better, even though I hate putting things off any further.  Since this appointment is in the early afternoon, my husband may be able to go with me if he is not scheduled to work.  We can make it a round-trip, one day circle to the appointment and back.  That would save some money, which we really need to do.  I need four days of motel and meals for my ex, who will stay with me through the surgery and first three days of recovery.  I estimated $30 a day for meals, but he said he would try to budget it for me to less, and the cheapest motel of any type of decency was $67 a night.  We may be able to handle it for about $400.  Hopefully we can cover that.

Sunday, February 27, 2011

I Need a Toddler Stroller

My stroller is falling apart.  I bought it at a thrift store over a year ago and it has served its purpose well.  But I am in need of another one.  It needs to be sturdy and be able to support a toddler age two (20-25 pounds), and hopefully last to about age 5.  I've searched thrift stores in Las Vegas.  Baby items, especially furniture, large toys, strollers and high chairs sell out very fast.  If anyone sees a stroller at the thrift shops that looks decent and is for older toddlers, please let me know.  I am just unable to tote the baby around now that he is older, and our stroller needs replaced with something more age appropriate.  Anything in the North Las Vegas, Las Vegas, Henderson area is welcome.  I'll run right out and look at it as soon as someone tells me about one.  Thanks!

The Rose Tattoo

The Rose

Like I said in a previous post, my son’s friend is a tattoo artist.  My son planned to get his tattoo when he was home in April.  But a couple fellow Marine friends pushed that time window up.  They took him to a tattoo parlor and paid for his tattoo.  It was an effort to cheer my son up.  We’ve both been depressed while trying to arrange the UCLA hospital stay and child care.  My son hates not being here to help directly, and I truly wish he were here to help – but his career is more important to me.  So, his buddies dragged him out and they had a tattoo party at one of the parlors.  He just sent me a picture of it.  It’s a small 1-1/2 inch rose with stem and leaves.  I have an “almost” matching one.  I say “almost” matching because his has MOM inscribed through the center of it.  I will be having his initials inscribed directly under mine, when he arrives here, thanks to his tattoo artist friend who lives here.  I may even talk him into a Survive Tattoo on my wrist.  It will be a purple ribbon with the word “Survive” inscribed across the center.

My Rose Tattoo was my little secret.  It signified my decision to finally leave an abuser and blossom on my own.  The Rose was my incentive that I would leave one day, and it was my secret.  That’s why I chose a Rose.  The rose and its connotation of secrecy started way back in Ancient Egypt and Greek Mythology.  In ancient Egypt, the rose was the Emblem for the God Horus. Horus was later known as the God of Silence.  In Greek mythology, it was said that Aphrodite, the Goddess of Love and beauty gave her son Eros (Cupid) a rose. He in turn, gave it to Harpocrates (Horus), the God of Silence to make certain that his mother's indiscretions were kept under wraps.

The Rose Tattoos will still be my and my son’s little secret (or not so secret), a joining of our souls and hearts that cannot be taken away even by death.  I love the idea of having matching tattoos in the same place with my son.  It shines a little light for me in this bleakness.  I like being joined to my baby with such a thoughtful mark.


I Grabbed the Bottom of the Barrel Today

How desperate does one get in trying to lengthen their time?

The answer is pretty desperate!  Would I think about shortening the time of someone else to lengthen mine?  The honest answer is – depends on who.  Would I stoop to begging?  Already have!  Would I sell out?  Would I make a fool of myself?  Would I compromise my values?

I grabbed the bottom of the barrel today.  I have a great doctor (oncologist) who gave me several numbers to call when I have questions or I am depressed.  My only questions right now center on the UCLA consult on Thursday.  I asked a lot of questions about my viability for the surgery.  My tumor is 10-inches long.  That is a very long tumor and doctors for my type of cancer do not generally operate on a tumor that size.  There is discussion as to whether I am stage III or stage IV, but the PET/CAT scan shows it has spread to the nearby lymph nodes.  I need to get an EUS (esophageal ultra sound) for more accurate results on whether the tumor has invaded my lung or pushed through esophageal wall into other areas.  But there is only one doctor in all Las Vegas that does that test.  That doctor’s staff doesn’t have a good grasp on appointment setting, follow through, or much else.  I’ve been lost in their shuffle.  Such is my luck.  I may have to get the test at UCLA instead, on the day of my consult or the days thereafter – if it even matters by then.

I am told by my doctor that UCLA bases their decisions for surgery on several things.  They look at the tumor and decide whether it is feasible to remove it and remake the esophagus.  They look at my viability to survive the surgery healthwise.  They look at how much the cancer has spread and whether it is possible to extend my time.  They look at whether the surgery is helpful or salvage surgery.  Yes, salvage surgery is just what it sounds like.  They look at whether I have a good support system while recovering in the hospital and after I return home.  Any of the above items or a combination of them can cause the surgery to be turned down.

When your life depends on it, you can beg real well.  And I will beg those doctors for this surgery.  But I was missing an important component to their possible “yes” decision.  I had no one to be with me through the surgery and the first four days of recovery at the hospital.  Hell, they actually prefer you have someone there the entire time (a full two weeks or longer), but the minimum is four to five days. 

I live in North Las Vegas, Nevada.  My husband has been unemployed for two years.  He was just hired for a new job five weeks ago – actually, on the very same week I was diagnosed.  He cannot miss work this soon after starting or he could lose the job.  Every one else I could ask either works, and cannot afford to miss that much work, or has committed to helping with child care while I am in the hospital.  UCLA is a six hour drive from my home.  No one can get away to accompany me that far or for that long.

So, I grabbed the bottom of the barrel today.  I asked my ex-husband to take me, stay with me, and fill that position.  Without knowing our history, you cannot possibly understand the dynamics of this decision.  I grabbed the bottom of the barrel today.  He will go with me.  He was practically delighted to do it.  I grabbed the bottom of the barrel today.  I cannot go lower than this. 

Saturday, February 26, 2011

Good Things from All of You

The Good Things You’ve Shared with Me

Good things that have come from my ads, postings, forum connections and penpals:

(1)     MedCure – Thanks pontificator.  Pontificator directed me to a place that provided free cremation if you donate your body to science.  That saves me $400 to $695.  He helped me cross another item off MY Major To Do List.

(2)     The Caring Place – Thanks Allie.  Allie directed me to a local organization that provides massages, reflexology, guided imagery, meditation instruction, yoga, Reiki, healing touch, nutrition lectures, and a huge library for cancer patients.  She helped me cross an item off my Bucket List.

(3)      Magic Cocktail – Thanks Rusted.  Rusted offered a recipe for a throat numbing medication for when swallowing becomes too painful or difficult.  He wrote: “There is a cocktail if you will that you can get from your doctor called magic mouthwash that makes it easier to swallow. It`s equal parts of mylanta/visc.lidocaine/benadry.”  I will certainly ask my doctor about this.  I cannot use it yet, because I need to monitor the pain and difficulty swallowing until the upcoming consult at UCLA.  Thankfully, I have a high pain tolerance, probably due to neuropathy from diabetes.

(4)     Two PenPals – I received two very good penpals.  Allie has been a great help sharing her daily life and some really good suggestions, and of course, her prayers.  Jen shared her work and interests with me.  A few others have contacted me, I won’t mention them by name but I guess their lives became a bit hectic.  They start out keeping in touch and then they move on.  That happens a lot, and that’s why I keep advertising.  A few good people will send me good information and encouragement and then life goes on for people, and I search for a few more.                                                                                                     

Naysayers and Trashers

The Worse Naysayers and Thumpers

Whenever you post anything on the Internet, you get bombarded by crackpots, asses, naysayers and those who like the entertainment of being hateful and slamming others.  But you know who the worst naysayers and thumpers are – those who claim to have cancer, too, and then trash you for the things you say.  One guy befriended me right away.  Let’s call him CancerMan.  CancerMan wrote to me at my personal email, sympathized, said he had the same cancer and some encouragement for me, and gave me a phone number.  I sent my phone number to him.  Then CancerMan made some more postings on the forum.  The posts said he doubted I was sick.  CancerMan agreed with one of trashers that I was probably a scammer.  CancerMan said he has my type of cancer, and had brain cancer surgery, and belongs to several “real” online cancer groups, blah, blah, blah.  CancerMan said my cancer cannot be real because I haven’t reacted or been just the same as he has through his cancer.  Really, I say!?!  CancerMan said my pain has not been equivalent to his because I dare to still eat and swallow my foods, therefore I’m lying.  He said my symptoms are not the same as his therefore I’m lying.  [And yet, all my symptoms are quite common for my type of cancer and can be found on the Internet very easily.]  Another person stated that my Bucket List and asking for help makes me a scammer.  The two joined up and trashed me several times.  But, just maybe, they are the scammers – actually not scammers in the sense they seek to scam for money, but scammers.  People who prey on others with hate and misery that they dish out for their own pleasure over the Internet.  You know the type!  They jump on every single post and beat it too death.  I have proof of my cancer, and am willing to provide it.  I think anyone who wants to provide real comfort or help should ask for proof.  It might sound cold or heartless, but scammers do seem to flood the Internet.  CancerMan never offered any proof.  Maybe he’s a sympathy seeker, attention whore, secret trasher, etc.  I think that if he joined real cancer survivor groups and faked his illness for attention and sympathy, then that is very, very sad indeed.  But, hell, maybe we all are attention whores and sympathy seekers.  We all need some support, some friendship, some help at points in our lives.  My cancer is real.  Is his?  I didn’t even think about the possibility he was lying.  I readily accepted CancerMan’s statements that he was ill, too.  I accepted his offer of friendship and encouragement.  His offer of friendship hurt because he scammed me.  It made me want to avoid the Internet all together – but then again, I do find a pen pal or two here that makes me feel better.  So, I guess I’ll stick with it.  If anyone knows of forums, ad boards or places I can post a link to my blog, please send me the information.

Suicidal thoughts

Want to Know About Dying?

You want to know what dying does to you?  It gives you all kinds of crazy thoughts.  Every time I go to the doctor’s office or out to run errands, I think about not coming back home.  I think about driving as far as I can, then abandoning the car, and walking as far as I can, and then just lying down and dying.

Naysayers will jump on that one. They will say, if you really are dying then you would never think about suicide.  You would cherish every day you have left, and want to live every minute.  I say to that, “Walk a mile in my shoes.”  People who live with you do not want to see you cry every day.  They don’t want to be reminded that you are dying.  They don’t want to hear about you aches and pains and complaints.  They don’t want to share your depression.  They don’t want to die along with you.

So, I think about it.  I think about just dying my way and giving it up.  I think about driving away and never coming back home.  I convince myself that it would be easier for my family.  I convince myself it would be easier for me.  I sit at the wheel and ponder taking the wrong exit and driving until my money and gas tank runs out.  I think about it so much I even look at maps trying to choose a road that goes on and on to nowhere.  There are a lot of them in the Death Valley area.  Then, even as I write this I think I better not reveal too much in case I make the choice to go.  I don’t want anyone looking in the right place.  I think about what it would be like to just drive and drive without a destination, without nay worries, without and stress.  I think about it.  I think about it a lot.

Then something happens.  Like this week, the baby got sick.  He was running a real high fever and my husband, like many husbands who are clueless with kids, didn’t know what to do to comfort the baby or bring down his fever.  It stresses me terribly.  When I’m gone, my husband will not know how to comfort the baby when he’s sick.  And I can’t fix it.  I cannot train him to take care of a baby in the short time I have left.  I haven’t the energy.  I haven’t the time.  I haven’t the desire.  The only desire I have is to drive away.  I know it’s the depression talking.  I know being sick with a bad cold is making it worse.

I try to focus on positive things.  You know – be one of the brave courageous fighters!  And then I think, “Screw that.  Who cares?  I sure don’t.”  Be courageous for whom?  My husband?  His life is going to be bombarded with things he has never had to take care of before.  His life will be blasted with pressures of single parenthood and taking care of someone with dementia.  I’, sure that my being brave will help him with all that *sarcasm intended*.  As for being brave, I cannot even find reliable child care for him.  He may lose his job over this just because we have no sitter for the baby when he works.  I just want to drive away.

At a time when I’m the one who needs the support, I am the one who is working hard to be sure stress does not overload the ones I leave behind.  It’s so much more than I was doing prior to the diagnosis, and at this point my energy reserves are so low. 

This week I spent a two hours at the Social Security Office with the baby in a stroller.  Only another mother can relate to entertaining a baby in a stroller for two hours.  I took snacks and toys, and did the best I could.  Now add to that being so tired you can barely raise your head and being in a room full of more than 50 people with that noise and busyness and commotion.  When my number was finally called, I went to the window (my sixth trip), and was told that I didn’t have the right papers – again.  I flipped this time.  I said, “Here are my notes.  Here’s the last idiot I talked to here, along with the names of three other idiots I spoke with here, and I wrote down exactly what they told me to bring, each and every time – and as you see, each time they asked for something else.  I have ALL the papers you have requested – ALL OF THEM.  I’m dying and I’d like to have the card before I die.  Is that too much to ask?  Now, take the damn papers and give me my damn Social Security card or I swear I am going to have a melt down that requires you calling an ambulance to take me away!”  At that moment, the security guard came over.  I guess I raised my voice.  I guess enough of my buttons had been pushed that day.    The guard didn’t say anything.  He just stood there a bit menacing.  The man behind the counter took my papers and told me the card would arrive in the mail in two weeks.  And all I could think was … why did they make that so hard?  My papers were wrong until I threw a fit and then they were okay?  Right!?!  *sarcasm intended again*

And all that made me think about the minutes, the precious minutes in my life that I have left that are being wasted by other people.  My doctor wastes them making me wait in his office for up to two hours for my scheduled appointments.  Social Security makes me waste them.  Welfare makes me waste them.  Welfare is another office that sends you away dozens of times in search for more and more different papers.  Each worker tells you they require something different or something more.  No one ever asks for the same thing.  And at Welfare, you sit for hours, and waste nearly a full day every time.  “Helpful People” are constantly telling me to go apply for benefits to help with my income.  It’s evident that “Helpful People” have never had to wait for hours on a hard chair in a very noisy place, over and over again, when they feel like crap, just to abused, ignored and harassed by the workers behind the counter.

I just want to drive and drive until the road ends, and walk and walk until my legs give out, and then lay down, preferably in a cool or cold spot and go to sleep, forever.  But I guess that’s coming soon enough without the drive or walk.

Friday, February 25, 2011

PURPOSE OF THIS BLOG - FRIENDS & POSSIBLY FILLING MY BUCKET LIST!

I'M DYING!  The purpose of this blog is very simple. I’m dying within a very short time. I have no means to fulfill a Bucket List, but would very much like to have some simple enjoyments before I die. So I created a Bucket List. It contains some selfish pleasures and some simple needs like diapers and child care.

My Bucket List is not long, not expensive, not too luxurious – but I have no means at all to fulfill even the simplest items on it. I am hoping that there is still generosity among people. I don’t want pity, or hateful comments about this – I would just like to see a little charitable love, encouraging comments, support from the masses I suppose! My email is listed here along with my mailing address, at the bottom of the Bucket List (right hand side).  Someone suggested asking people to send just $1 or 2 to the address.  They said it adds up.  So I'm going to give it a try.  I try everything suggested by those that contact me that seems even a bit logical.  I already received many good ideas and links that have saved me money, including a link to donate my body to science and save cremation costs.  Someone also directed me to a place in my area that offers free counseling, Reiki, massages, reflexology and such for cancer victims.  The few dollars I may receive in the mailbox will help me keep diapers stocked up and cover gas and meal expenses for appointments in LA.  I'd also like to experience a little bit of hope by having something to look forward to. If I can look forward to sharing this experience with others or setting a date to see a show or enjoy some elegant food or garner a friend or two before I die – it will add to the measure of the time I have left.  Maybe if I can cross items off my list one by one and share my enjoyment of them with other bloggers – I may lengthen the short time I have left with. It’s worth a shot isn’t it? My list is short and simple - but maybe as my time passes, and as I see some of them fulfilled, I can add a few more over time - and hope that my list continues to grow as does my "limited time" - but even the time doesn't grow, at least I can enjoy a few sweetened moments and share those moments with all of you! 

Lovely - Whole House is Sick

Head, Chest Colds

Lovely!  Just before leaving for my consult on Wednesday, I've come down with a cold.  The baby ran a high fever all night.  Didn't sleep much at all.  Spent the night rubbing him down with wet cloths to lower his temperature.  My father had it first.  He complained of congestion in his chest.  We tried to keep everyone separated from him, but he has dementia and doesn't take care to prevent the germ spread.  Then the baby got it, and then I got it.  We all have head colds, congestion, fever, sore throats and a cough.  I tried disinfecting everything, staying away from every one and leaving food prep to my hubby - all to no avail.  Might be a day or two before posting resumes.

Thursday, February 24, 2011

Wasting Time Posting to Forums

Posting to Forums, Daring to Eating Out, Wasteful Money Management

I have posted my blogs links to quite a few forums.  I’ve been trying to increase my readership and hits on my blogs, and also connect with many more people.  If I post to busy forums like Religion, Craig’s List, and such, I put myself in front of perhaps thousands instead of a mitering few.  Even with those thousands of hits, I only get a few responses – I’d say maybe 4or 10.  Out of those 4-10 people who respond, half will seem sincerely interested and half will be asinine people who just want to be hateful and nitpicking over the internet.  The asinine people and nitpickers make me appreciate the sincere few.  In addition, if I make a good response to one of the asinine, then that person flags my posting and I have to start over again.  After a post is flagged, it is removed.  ANYONE can flag a post and cause it to be removed for any reason including being found out that they are just asinine and want to be vengeful.  But even with the sincere few, some of them lose interest and fade away quickly.  In all, after a couple thousand readers, I end up with maybe one or two sincere pen pals who help me through my mundane and grievous days, or give me good ideas for prevailing against my long list of things I have to get done before I die – my personal Bucket List, not the one posted here.  It has 35 items on it with only two crossed off.

Things they say that I defend:
(1)  Get off the list and spend time with your kid – I probably should get off the lists and just complete that long To Do List that looms over me every day.  But depression wins out a lot.  I only spend time in the forums or responding to email from well wishers when my two-year-old is sleeping or at night when I am here alone with my thoughts while he sleep and my husband is at work or also sleeping.  I suffer from insomnia a lot these days, partly due to medications, partly due to anxiety.  The forums sometimes ease that.  Emails from well wishers always ease it.
(2)  If you can eat out, you’re a scammer - Everyone eats out sometimes – even the homeless for gawds sake with the meager bucks they beg for.  For us, "eating out" at somewhere nice always included coupons or comps, or someone taking us out for a celebration or special time.  What should I do?  Ask for the cash instead of the meal out?  That would be the utmost of tacky or crude.  I use comps, coupons, gift certificates and such whenever I can.  But, hey, maybe the day of standing outside McDonald’s and begging for a meal is not that far away.  I guess I’ll get blasted for “eating out” and “begging” and being a general loser then.
(3)  If you can eat fast food out then you are not bad off -- I don't see why eating fast food sometimes would even matter.  In Las Vegas they have a lot of buy-one-get-one-free deals.  Fast food is cheaper than eating in, and there are no dishes or mess, and it gets me out of a grieving household.  With a two-for-one, we can get two Whoppers for $2.89.   We also have an Entertainment Book I purchased prior to the diagnosis that has tons of two-fer coupons.  I use them all the time.  If I get some type of fast food while we are out for just a $1 or $2 per person, it's as cheap as eating home.  Plus we cannot afford to eat at restaurants two or three times a week while running around for doctor appointments, and it's not always convenient to run home and eat and run out again, plus we always have the baby with us.  I carry snacks for the baby, but the doctor appointments, standing in line for a SS Card and such does not always time out right and sometimes we need to grab something to eat.  I don’t eat fast food when we go out running errands just because I love fast food – in fact, right now, no food tastes very good to me.  I eat to live, I don’t live to eat.  I have to chew everything to such a fine pulp that it is not even appetizing.  If I get a Whopper, I wind up eating about 1/3 of it and throwing the rest away.  It’s just a convenience at times to eat fast food, it’s cheap, but certainly not a treat of any kind. 
(3)  Your blog says your husband takes the baby out to breakfast out – Wow.  It looks like I certainly enjoy wasting money I don’t have to spend, huh?  Sometimes my husband takes the baby to breakfast so I can rest. I am extremely tired a lot of the time.  Sometimes, the baby wakes us up at night with a seizure, which means an all night trip to the hospital.  Plus the baby tends to be loud as baby's can be at times.  And sometimes, the baby just does not want to sleep when we do and plays for several hours, deep into the night.  My husband sometimes takes him to breakfast at McDonald's so I can sleep in a bit.  The baby plays on the play equipment.  He orders the baby a side of scrambled eggs ($1) with no drink because the baby still has a bottle we fill from home.  My husband gets a Big Breakfast for $2.89.  Sometimes it's just as cheap to eat out in Vegas as at home.  We are fighting depression and getting out a little helps.
(4)  Why don’t we get financial help from disability and food stamps?  -- That is exceedingly hard in Nevada.  Believe me we tried.  We are applying and trying for various help like SSI, disability, etc.  In Nevada, food stamps are not an option because they count my father’s income since we live with him.  They don’t count expense, which eat up most of his income, including medical expenses.  There is no night time child care here and that is a BIG concern.  I’ve donated my body to science through a forum posting from Ian (thanks Ian), so that eliminates cremation costs.  See, sometimes the forums help a bit.
(5)  Managing my little bit of money better – Naysayers recommend that I forgo those McDonald’s $1 meals out and my Wish List, and go buy some underwear at the thrift shop or shop cheaper and better for things I need.  I use to shop a lot, and I was a real bargain hunter.  I know bargains from crap.  Underwear at the thrift shops, huh?  Have you been there, have you looked?  Bet you haven’t.  In Vegas there is not much to choose from.  Most are a little ragged and stretched out.  As for the $1 bins at cheap stores – they have them.  The underwear in them are the cutesy mini panties, low on the hip panties, lace panties, see-thru panties, and generally panties for young teens, not people like me who want a cotton pair of full size underwear on me while in the hospital.  Plus, real shopping and looking through bargain bins really tires me out.  I try to avoid that.  Believe me, I budget my money constantly, I think it about it day and night, I fret over many little purchases, I penny pinch for child care.  It’s an ongoing pain in the ass concern without a minute’s let up.  So go ahead and shoot me for a cheap-ass meal out.
(6)  Having a Wish List, wanting to have some fun – Money is a constant concern.  I worry about it night and day.  It’s been suggested I attend free things instead of movie tickets and shows.  We do.  We use our Bank of America card free museum weekend each month for the three local exhibits it covers.  We take the baby to the water parks when it’s hot.  We go to the library and local rec centers, many of which are closed earlier and on weekends and Fridays due to the economy cuts.  I like free concerts and such but sitting on the ground, or in a folding chair, or on a hard bench just wears me out.  We even tried Drive-In movies on Family Nights, but sitting in the car for so long, especially with a crying or antsy baby, just kills me now.  So I crave soft movie seats, seeing a show, and such, as things that will let me forget how crappy dying and constantly budgeting can be.  I don’t think it’s wrong.
(7)  Naysayers -- The problem with posting your thoughts, dreams, wants, and depressions is the same every where -- the naysayers and asses read too much into the little things and pick apart non-consequential things like cheap eating out and gift dinners.  So what if someone eats out occasionally?  So sue me if I choose a $2 McDonald's meal over a pair of underwear!  So sue me if I want a few normal feeling things in my life while I'm dying and grieving!  I think about dying all day long.  I think about the people I will miss.  I worry about the burden my loss will place on them.  I worry about how they are going to survive.  I hope for anything that will take my mind away from it for even a few minutes.

Wednesday, February 23, 2011

Good Looking Polite Men, Great Dinner - It Was the Best of Times

Nice Marine Surprise

We had a nice surprise the other night.  A taxi cab pulled up – hardly ever see one in this neighborhood – and out stepped two of my son’s friends, Marine buddies, from Camp Pendleton, stopped in to visit.  They were in Vegas for the three day holiday weekend, plus an extra day’s leave.  We insisted they stay with us.  It’s a small house, but we have two twin beds in the baby’s room.  We doubled the baby up with us, and they stayed in his room.  I told them it was silly to pay for hotel rooms at over $100 a night and expensive taxis when they could stay here for free and borrow my car to run around.  The carpet’s a bit sticky in the baby’s room, but other than that fresh sheets made it good as could be.  I told them groceries were plentiful in cheap eats and to make themselves at home, and gave them a spare set of house and car keys.  We hardly heard from them the first days.  They would come in late, a bit rowdy, shower and crash, sleep till noon, and then be gone again all day long.

On the last night they were here, I found out that my son, the Marine stationed at Virginia Beach, VA, had sent them to check up on me.  For that last night, they had a nice thank you dinner planned for us along with a girlfriend to babysit.  They took us to Texas Station and bought us shrimp cocktails and drinks at the bar, followed by dinner at Austin’s Steakhouse.  The four of them, the two Marine boys and two friends of theirs, stayed out in the casino and played slots and table poker, while we dined in romantic privacy.  One of the friends had a $30 casino comp and the others split the bill between them.  I found out my son’s good friend had already ordered for me when we went in the restaurant.  My son told them I would be too polite to order the lobster, but that’s what I would really want.  So, they pre-ordered the twin lobster tails for me.  I tried to squirm out of it when I ordered, just like my son predicted, but the waiter would not let me.  The boys had really pressed him to make sure I had the lobster.  It was so good.  Nice thick chunks of lobster, smooth as silk, soaked in hot butter and swallowed with glee.  I could only eat one and a small bite of the second.  That filled me so much I almost puked, but I hated to waste any of it.  It was lovely, and I chatted on the phone with my son and gushed about the surprise dinner while we were being served.

This was really an exceptionally nice thing for all of them to do.  New Marines only make about $1000 a month and they have quite a few uniform expenses that get paid out of that, plus some of them send money home.  They split the bill so it only cost them about $30 each, and my son chipped in some on it, too.  I think they spent way too much.  Dinner at Red Lobster would be half that price and just as good - but it was a gift, so no complaints.

I’m so proud of my son.  He completed Marine Boot Camp in September of last year, and is in school at Virginia Beach, VA.  He finishes school in April.  I can’t wait to see him.  It’s been too long away from each other.  He just made PFC (Private First Class).  He’s a good boy.  He helped me pay two payments ahead on my Cobra insurance so I don’t have to worry about them cancelling it because of the cancer – and he paid my pay-as-you-go monthly cell service so he can text me constantly.  The naval base ombudsman has been working with him on accepting and understanding my diagnosis and short future.  At first he wanted to come right home, but I said, “No.”  I wanted to be sure his schooling/training was complete so I would not have to worry about him being taken care of after I’m gone.  It looks like he may be able to spend an entire month with me in April.  I can’t wait.  He plans to spend hi entire paycheck on diapers, dinners out and movies for us.  Of course, I make him be more frugal than that and help with co-pays instead.  His April visit should come around the time for my four week check up at UCLA (if they agree to the surgery next week).  It’ll be nice to have him along for company and to help watch the baby that month – that is – if I get to have the surgery and if I survive the surgery.  Keep your finger crossed for me, and your prayers heaven sent and heavy laden.  I’m not asking for a miracle, just a little more time than I’ve been offered.  He's working on being permanently stationed at 29 Palms or Miramar San Diego, so he can be nearby and visit lots.

Another great thing the ombudsman is doing for us is organizing an adoption.  My husband, stepfather to my son, is doing an adult adoption so they can be legal family.  Someone the ombudsman knows is handling the paperwork and rushing it through for us.  I am hoping they might be able to also help us with making my husband the full legal guardian of my grandson.  Since there is no blood relation between my husband and grandson, and the guardianship has only been in my name, and we worry that there could be problems with custody after I’m gone.  I’m hoping that can all be settled prior to my “possible” surgery.  My surgery consult is only a week away (March 3).  The surgery will be very serious and very intent, and I could die during or right after due to complications.  I’ll know more about my immediate future after that.

Naysayer, Scamming, Dying Wish List

Naysayers about Eating and Wish List

I know in this day and age, everyone is looking to be scammed.  I’ve been accused of scamming about my cancer because I have a Dying Wishes List (Bucket List).  You wouldn’t believe the nasty accusations and ugly notes I’ve received focused on only the Bucket List.  Or maybe you would.  The idea of a Bucket List became popular after the movie, “Bucket List (2007)” starring Jack Nicholson and Morgan Freeman was released.  A Bucket List refers to things you want to do before you “kick the bucket.”  Many people have them just as a life joke or as goal while they are living.  There are also tons of lists about “Things to Place on Your Bucket List.”  If you are rich, like the guys in the movie, I guess a Bucket List is pretty easy and it certainly appeared fun.  But when someone is really dying, or knows they have a death sentence in place, it’s not fun.  But certainly, I shouldn’t be trashed for having a Bucket List.  Most people pick one or two things from my Bucket List that seem excessive to them and beat it too death.  They don’t even look at the majority of the items focused on employment for my husband, the baby, a wig or clothes that fit.  They focus on the desire for spa certificate or eating out or going to a show.  Why are those things on my list?  The spa certificate would be used for a massage or relaxing treatment, not pedicures or manicures.  My doctor suggested massages and such treatments to help relax and relief stress. It’s considered an alternative therapy for people with cancer.  If one can keep a positive outlook and remove themselves from stress or at least control it better, their chances of longer survival are more.  So, what’s wrong with asking for that?  And what’s wrong with putting a few niceties on the list, some enjoyments, to help relax?  I never asked for money!  I’d be so happy just to receive a box of diapers or a really good thermometer.  Does that sound like a scammer?  Plus, I offered to send a copy of my PET/CAT scan results as proof to anyone who asks.  I still make that offer.

I was also accused of scamming because I placed a restaurant review online about a steakhouse.  Surely, the naysayers said, if I can eat steak then I am not sick and do not have esophageal cancer.  Surely, if I have time to write reviews, then I am not so sick I am dying.  Actually I do eat steak and other foods (and I enjoy writing reviews, so shoot me).  Each person stricken by cancer is different. Each person stricken by this type of cancer is different.  I eat steak, breads and other foods, but I have to take very small bites and chew them to death to swallow them. I had a few bites of my husband's cheap quality steak the other night. A few bites is usually all I can handle of rougher foods, which I chew too death, and then I put the balance in the refrigerator and reheat it a little bit at a time as I crave it. I absolutely love breads, especially hard breads like rolls and sourdoughs.  I’ve basically given them up except for an occasional bite or two because I crave it so much.  The pain I have when I eat is not in the swallowing as much as it is in the place where it settles in my esophagus right at my chest bone, the place where you place your hands for CPR.  It does hurt a bit to swallow, but the main pain is lower, after I swallow.  My throat tumor is ten inches long and travels down the entire esophagus. It is a larger width at the opening of the stomach than in its length.  I've always had a high pain tolerance due to nerve damage. My fingers and toes have been numb for years and maybe that prevented a large degree of the painful swallowing. That was part of the problem in hiding the cancer from detection. The pain was not hard enough or warning enough.  And, I did not know I had the cancer until a few weeks ago, which is true of most people with this cancer (confirm it online). I repeatedly saw a physician about the difficulty eating and was assured it probably wasn't anything more than anxiety or stress related problems. He said the same thing about my weight loss. I was stupid, I believed him. The tumor grew the length of the esophagus and didn't completely block the passage, but it is larger now near the opening of the stomach and that caused the pain which is increasing.

To the Naysayers - believe whatever you want. I know there will be people who doubt things no matter what words, proof or testimonies are offered.  Like I said in this blog, I have proof, medical proof (PET/CAT scan results telling of the ten-inch tumor) and will provide it for anyone who wants to see it.  And as far as having a bucket list - that does not negate anything I say.  It's practical.  It’s something many people put together when they are dying, and I was told having something like that to look forward to might help. I'll do anything that helps me last longer.  The spa item is because I was told massages can reduce the stress and help as an alternative treatment, as can acupuncture. My insurance will cover acupuncture but not massages. Plus I wrote on the list, the spa was something that I can readily skip for the more important things like a solid job for my husband and reliable child care. No one wants to focus on items like that or offer ideas for them.

I’m not going to let people shame me for having a Dying Wishes List.  I’m not going to let people blame me or accuse me of being a scammer because I placed ads on the internet to increase my blog readership and find online friends.  I know horrible asinine people exist in the world and I know many of them have found their place on the internet where they can hide behind anonymous names just so they can attack and spew hate.  And I’m sure I’ll get more hate mail when I post a Post Office Box address where people can send a $1 or $2 or diapers or anything to help.  But I am not and will not feel bad about it.  It’s just part of trying to survive under these insurmountable odds life has placed against me in a very bad economic time.  I welcome your comments, good or bad.  I will embrace the good ones and delete the bad ones.  And I’ll be exceedingly gracious and thankful for any and all help offered. 

I DO NEED HELP:  The help I request the most right now –
(1)  Ideas about reliable child care (evenings and nights) in Las Vegas, and
(2)  Leads for a full time food server position for my husband (preferably at a casino in Las Vegas with Culinary Insurance), but we’ll consider anything and just continue to pay Cobra if needed, and
(3)  A good quality thermometer to check for fevers during recovery at home, and
(4)  A wig that looks like real hair, preferably long or shoulder length, golden blonde or strawberry blonde, and
(5)  A Walmart or Target gift card for some underwear that fit, since weight loss has caused mine to be loose and fall down, and
(6)  Diapers, size 4.

Really!  Those are my highlights right now.  Those are the things we struggle with.  I can’t believe we are that much more different than anyone else in this economy.  Send comments to sweet2things@sbcglobal.net or post them here.

Response to Anonymous Comment

RESPONSE TO ANOTHER COMMENT:

Thank you for taking the time to leave a comment.  It means a lot.  My ad campaign and postings about my blog have helped.  I've made a few "penpals" and one person directed me to a really great site called Daily Strength.  I looked everywhere for some good Esophageal Support groups and could only find a few that were outdated with postings over 2-3 years old, and many that were no longer working websites.  Daily Strength actually had a specific Support Group for this cancer, plus a lot of personal support groups sponsored by the members.  I hope to receive more information like that as well as make some new friends who are able to understand or willing to try.  I post most of my thoughts on my blog and respond there because it's easier, but I do respond personally to specific emails and those who email back.  Thank you again for taking that time.

Elaine S
=============================================== 
Anonymous has left a new comment on your post "All of Sudden Vanity has Reared its Ugly Head":

Hi,

I just wanted to say I came across your blog and to tell you you will be in my prayers - and I would have emailed you, but I can't find an email address on the blog. It's probably here somewhere, but instead I thought I'd leave mine! So write to me if you want and maybe we can be "penpals." :) learning.to.trust at gmail dot com

Take care tonight!

Matching tattoos and a tattoo for the cancer journey?

Tattoos?

My youngest son, the 19-year-old new Marine, called to tell me that he is getting his first tattoo.  It’s going to be a “rose.”  It’s significant to me alone, because his rose tattoo will mirror one that I’ve had for over 30 years on right chest.  The rose is only an inch and half in length, red with green leaves and a black stem.  He comes home for a visit the first of April and will get it then from a friend of his who does tattoo art.  He is going to put “Mom” just below his rose, and I’m going to add his initials just below mine.  I thought it was the sweetest thing.  It joins us a bit more with another lasting memory.  His friend also offered matching tattoos for my husband and me, and maybe something to mark my cancer journey.  Along time ago, I picked out these two little cartoon snakes, intertwined, with a heart above them, about two inches high and an inch or so wide.  They look so cute, one pink and one lime green, representing me and my husband and our love.  We never got the snake tattoos because we just did not have money to throw away on such things.  It was nice of my son’s tattoo artist friend to make the offer.  I only have the one rose tattoo.  The inch long rose on my left chest.  My husband has only one tattoo as well, the Egyptian Eye with flames, on his left shoulder.  I know some people approve of tattoos and other do not.  I think of it as wearable art and always liked mine.  I prefer tattoos have some type of date or achievement significance.  I got my rose tattoo when I liberated myself from my first husband who was an abuser.  It was a show of defiance, he told me I couldn’t have one, and a show of confidence to stand on my own.  I really loved it and wanted more of them, but never had the money to commemorate another occasion.  I think I would like to get one more that signifies the cancer and my journey with it.  I’m not sure what it will be.  Maybe a time line with the date of diagnosis, and then markers of survival along the way.  I’ll hope it is not too short a line.  Does anyone have any ideas for such a thing?   I’ve looked at tons of art but just don’t see anything relative to what I seek. 

Tuesday, February 22, 2011

All of Sudden Vanity has Reared its Ugly Head

Vanity for Cancer

It’s also hard to avoid vanity when you get up and get dressed each day.  My hair is always my first concern.  I still have hair left, although it is very, very thin.  When I gathered my hair in a rubberband in the past, it was nearly as thick as my wrist.  Now it’s not even as thick as half my pinky finger.  It won’t even hold a small rubberband.  Maybe it’s time for a wig.  But wigs are hot, and uncomfortable, and look like – wigs.  I never liked looking fake.  But vanity grows on me.  I want to at least look nice, less pathetic, and maybe a wig will help.  But that bring up another problem – wigs that look real enough cost way too much for my small budget.  I guess I’ll be looking at hats and scarves instead.  When I dress I also notice my neck.  When I was heavier, my skin was all smooth.  Now it bags around my face and body, all wrinkled up, making me look way older than my age.  I especially hate my neck.  I watch those Lifestyle Lift commercials and read them in the magazines.  I pull the skin around my neck and mouth area back a little, and watch it shave years off my tired aged looks.  And I wish I could get a lift just to avoid some of the pitiful looks I get.  My skin was always smooth and soft.  Now the skin all over my body is dried and flaking.  No matter how much lotion, collagen or creams I use, it still flakes daily and looks awful.  I never cared about scars.  I like to wear them like badges of courage, lines in history, a diary of my life.  Yet, the surgery I may undergo leaves a long scar down the side of my neck, and another one under my arm the length of my side.  I don’t mind having the scars, but I think they will add to the pathetic looks I receive.  I just don’t need that.  Lastly, I have to choose something to wear each day.  I get awful hot flashes and sweats that last a couple minutes at a time, like an intense fever, so I never dress very warm.  The selections in my closet are few.  My weight loss was so fast that my sizes changed dramatically month to month.  Everything I owned, years of nice clothes I saved for and collected, no longer fits.  I tried wearing things as long as I could, but it got to a point where things looked awful hanging on my smaller frame.  Twice I went out and bought some jeans, a dress, and several tops.  Twice, the items I chose became just as baggy and awful looking on my frame as I lost more and more weight.  I’m at the point once again where I need to buy a few things that fit.  But money is getting scarcer, so I really need to take care.  I’ve resolved to buy only a few panties that fit and a couple sun dresses.  I can wear the dresses with sweaters and they tend to fit longer than pants do.  I cannot justify throwing away and buying more clothes.  Well, I don’t throw them away, but since they are so cheap and I haven’t the energy for a yard sale, I give them to the thrift shops.

I have never thought of myself as vain.  I was always very confident about my looks, meaning I always defend people in their unique looks.  I did not think of that as vanity but maybe it was.  I felt that your looks are your individualism, and why would anyone ever want to change that.  People love all types of people for many different reasons, of which looks is only a small part.  Whenever someone insisted they were too plain or ugly to find love, I would tell them to look around the room at all the people they are standing with.  I’d ask them if they see anyone they find interesting just based on looks and to point those people out.  The friend would choose several people.  I would tell them I chose different people than they did and point mine out.  We’d laugh a little bit at each others choices.  Then I would say, just as we chose certain individuals, there were also individuals in the room who chose us.  There is no reason to be alone or without a mate of some type.  Most of the time it’s just a matter of putting yourself out there and meeting an abundance of people so you or the people who would pick you, have the opportunity to chose each other. 

My ideal man has a larger than average nose, a bit of barrel chest or beer belly, not real tall (maybe 5’7”-5’10”), and very average looks.  I’m not into muscle boys or hard bodies.  I’m not into what other people consider movie star looks or handsome hunks.  But I believe the husband I chose, who fits my ideal man aspects, is a gorgeous handsome hunk. Others might not agree with my choice.  Others might agree with the choice he made choosing me.  When he chose me, I was a boisterous 220 pound woman who loved life, laughed a lot, loved her children furiously, was outrageous at times, and liked to help others whenever I could.  I had a beautiful head of hair that I always wore long (to the center of my back).  It was thick, so thick that a rubberband could not be doubled around it, and soft and straight (unless I curled it which I did often).  Ah, I guess that is vanity!  But his heritage focuses more on thin people.  My heritage tends to focus on tall, blonde perfect individuals.  Screw heritage!  Screw family and friends who want you to date or marry based on looks.  I chose my man for his goodness.  He said he was looking for someone who would love him for himself.  What more could a person want.

But, I guess vanity catches up to all of us.  I wanted to grow old gracefully.  I was very comfortable in my large framed body.  I am not very comfortable in this 150 pound body.  I’m not comfortable with my hair loss.  I’m not comfortable with the excessive dry, flaky skin and baggy skin sections under my arms and on my legs.  Vanity has definitely set in.  I don’t need people to say, “You look great.”  But it would be nice if I was not greeted with, “Wow.  You’ve lost a lot of weight,” when it is said with sadness and disbelief rather than congratulations.  I don’t like being greeted with a “You don’t look so good.”  I don’t like being greeted with a surprised look and very sad hug or tearful eyes.  It’s hard to avoid vanity when people cry when they look at you, including your own family.

Monday, February 21, 2011

No One to Be There for Me

UCLA Plan Disappointments

My family is so spread out, most more than two hours away or several states away.  I have to make a trip to UCLA for March 2-3 for a surgery consult, followed by another trip about week later if I’m approved for surgery.  I had my older son and daughter-in-law lined up for the trip to the UCLA consult, to keep me awake while I drive and be company for me.  But as usual, they turned out to be terribly unreliable.  My son wanted access to my van to run around LA while we are there.  He is a poor driver and also lets his unlicensed wife drive the vehicles when in his possession.  I cannot afford problems that can cause, so I cancelled their accompaniment.  Now, I have to take my grandson with me to the consult, and we will go alone together with me taking him to the appointment in his stroller, because we cannot find day care and my husband cannot afford to miss work or be unavailable for work in his new on-call position. 

I'll be driving myself up and back to UCLA alone with my grandson, staying overnight one night to rest up for the drive back.  The following week for the beginning of my longer stay if the surgery is approved, will be a real nightmare.  I was hoping to take my older son and daughter-in-law with me, and the grandbaby, and have them watch him at the hotel for the first five days, while they alternated checking up on me and spending time with me in the hospital.  My doctor told me that they pretty much demand I have someone there to notify about the surgery outcome and talk to in case of death or complications, and to encourage and help me through the first couple days of recovery.  I counted on my older son for that, but it’s just not going to happen.  So, now we are stuck hoping my husband will be able to go to UCLA with me the following week when and if they schedule the surgery, and be able to stay two or three days, during surgery and after, but it's doubtful.  We cannot afford to jeopardize his brand new on-call job at all in Las Vegas’ bleak unemployment.

I considered, briefly, having my younger son, a new Marine taking Intel school training in Virginia, to leave school, fly to UCLA and spend four to five days with me, and pass on recovery information to the rest of the family.  He’s just 19 and the love of my life next to my husband.  But doing that could make him have to repeat his school, and I don’t want that.  He’s almost finished (April) and getting such good grades.  It’s one of the few things I look forward to without worry – that he will be taken care of for the next few years with no worries of income, medical, or housing.  My only back up for a person in the waiting room for surgery outcome is to have strangers (my son's ombudsman's parents from Miramar Base) sit in the waiting room and notify family of the results of the surgery.  All this really sucks but we do what we have to.  At this point, it is more important that my husband keep his new job and plan for caring for our grandson with it after I'm gone, than to have ready support through the surgery and first days following it – and that my youngest son is well provided for.  No one should have to decide between such things, but we do, and we have to make it work. 

March 2-3 is coming up fast.  Now, I get worry about whether my husband is adequately covering our child care problem for our grandson while I am gone in the hospital.  I get worry about whether lack of child care of some night causes my husband to get fired.  I get to worry about traveling alone without help to drive when I am exhausted.  I get to worry about whether the vehicle will travel well without breakdowns so I can get to the appointments on time.  I get to worry about expenses for these medical trips that we cannot really afford.  And “best of all” *sarcasm intended* I get to go through surgery alone and recovery alone or with complete strangers.  Wow!  I want to ask, “Can it get any worst?”  But I know it can, so I’ll just keep that question to myself.

For the surgery and recovery, I'll spend two weeks in UCLA (hopefully not any longer due to possible complications but I have been told complications can make it as long as six to eight weeks), then return home with a feeding tube and aftercare nurse (hopefully covered by our Cobra insurance).  I'll have the feeding tube for several months.  The surgery is not a cure at all.  It's just a time lengthening for the death date, giving me maybe a year instead of less than six months. 

The burden of all of this just causes me to crumble.  My father does not know about the cancer and cannot know about it, because his dementiated focus on it would literally drive me crazy and kill me off sooner.  So most of the time I have to hide what I do, telephone calls to doctors, chats with people, etc.  Also, I have a home in foreclosure with family members still living in the home.  I had to move to Vegas to take care of my mother and father, and to be closer to medical care, but if the mortgage company knows that, they will foreclose immediately on the my own home, making my son and daughter-in-law homeless.  My daughter-in-law has genetic breathing problems and struggles with bouts of pneumonia and other problems and needs a home right now.  They cannot afford to move and do not have anything lined up for when the house is gone.  More and more things for me to worry about.  They say stress and worry can kill you.  Maybe it has killed me.  I can’t help feeling selfish and wanting to say, “Please take care of me for a while.”  But it’s simply not an option.  So I just suck it up and move on.

Sunday, February 20, 2011

Followers: Please sign up on right side of page

For Followers:
If you are reading this blog, you can add my RSS Feed to your pages or email by simply clicking the "Subscribe to Dying Wishes" box on the right side of the blog.  Also, you can become a "Follower" by scrolling down on the right side to the Follower Section and clicking there.  Then I can see who is interested and who may want to join me in chat or emails as well.  Please distribute my blog to your friends and social networks.  The more people who view it, the larger my opportunity to gather support and friends.  THANK YOU.

Response to Las Vegas Well-Wisher's Comment

RESPONSE TO LAS VEGAS WELL WISHER'S COMMENT:

Thank you so much for the response shown below.  I have received about three comments so far, and so far they have been exceedingly nice, which surprises me.  I was beginning to think people did not have much time to communicate with someone who is dying, and you've brought me some hope.  And thank you for the contribution to my Wish List.  Don't laugh ... but when my Wish List fund gets large enough, I'm going to order a box of diapers for my grandson.  Every little bit helps.  And it is greatly appreciated.  You asked how to reach out.  I would ask that you just write to me.  Write about your mundane day compared to mine (really, we can both laugh and cry), comment on my blog, ask others to read and comment on my blog ... that's all.  Just knowing people out there are willing to listen and respond helps so much.  And hey, maybe we can meet for coffee one day.  I have a Starbucks gift card *grin* from a friend who knows how much I love specialty teas.  Funny things ... I never smoked a day in my life, not one cigarette and not a puff of pot.  Sometimes now I wish I could go back and at least give them a try *LOL*.  I never was a coffee drinker and never got into the energy drinks (although I should probably try both.  My cancer doctor told me to drink more coffee to help with energy levels - I wonder whether he was sincere or joking about it).  I never did recreational drugs.  In fact I can hardly do prescription drugs due to my excessive poor reactions to them.  I have Meniere's Disease which caused my inner ear to over-react to medications.  Anything with uppers or caffiene in it makes me shake and get bitchy and not sleep, anything with downers in it like Xanax or allergy medicine, etc. knocks me out for hours, and anything with pain killers makes me puke for hours.  I was such a goody two shoes while growing up, heavy into church, the good mother raising her children to be good, that I never experienced very much until way late in my life.  At that time I joined a risque social group and saw a bit more of life, but I left that behind about five years ago.  I feel like I missed a lot in life, but if I had to trade my children to get a better one, I would not go back and change anything.  I love my children.  I'm glad I had them.  I would not trade the cancer for them.  I'll get by with a little help from my friends.  I'll claim you on that list now.
----- Original Message -----
RESPONSE TO LAS VEGAS WELL WISHER’S COMMENT:
From: Anonymous
Sent: Sunday, February 20, 2011 10:33 PM
Subject: [Dying Wishes - Can you help fulfill mine?] New comment on Followers - Please Sign Up on Right Side at Bottom....

Anonymous has left a new comment on your post "Followers - Please Sign Up on Right Side at Bottom...":

Dear Lady, we have so much in common - we both live in Las Vegas, we are in the same age bracket - and yet we are worlds apart. My heart is full of wishes for you and your blog touched me deeply. So much of life is mundane, I know, and how sad to waste the precious moments paying bills, making doctors' appts, etc. I couldn't figure out how to become a follower but I would like to contribute $5.00 to your wish fund. I would give more but I've been out of work for almost three years ... I would like to reach out, back to you. Please let me know how to do that. You can reach me at
craigslistfaninlv@gmail.com.      Jen