Friday, May 27, 2011

DARK, DEEP DEPRESSION COMING

I am currently in the sickly stages of radiation poisoning.  I still have 18 daily treatments to go, in addition to four more week long treatments of chemo.  My radiation is daily and the chemo is ever 30 days for a period of one week.  The nausea from radiation sickness is quickly running me over and causing a deepening depression.  I spend 24 hours a day nauseated and sometimes vomitting.  I have another chemo session beginning May 31.  The chemo sessions make me vomit and have diarrhea for about two weeks.  I just cannot imagine piling chemo sickness on top of the radiation sickness I already have.  The doctors are doing the best they can to control the nausea but due to the location of the tumor right above my stomach opening, control it little to none.  I'm scared, depressed and becoming suicidal.  I just don't know how much more of the nausea, vomitting and diarrhea that I can handle.  I know I will be at an all time low by the end of the first week in June.  I'm going to need a lot of encouragement to just hang on to this nasty thread of life.  I hope someone can help.

Used Wigs, Scarves, Hats and Sunscreen (PLEASE)

A Request Please:  Wigs, scarves and hats

Before someone says it: yes, I know the cancer society supposedly gives away free wigs.  But I also know that involves making an appointment and sitting for some time trying them on.  My local cancer clinic also has a glamour night where they provide the same thing – wigs, scarves and hats to try on, and makeovers, and such – and yes, I would absolutely love to go.  But I don’t because most of my time right now is spent barely getting out of bed, and when I do I have to carry a vomit bag with me.  I only leave the house for my radiation and chemo appointments now, and the few nasty social services appointments I have to sit through while trying to get aid for my Cobra medical payments.  I’m just too sick to keep most appointments and wind up cancelling, and I’m too sick to sit for long trying things on.  I would so very much love to try on wigs and hats and scarves.  I’ve seen a few on other patients I really like.  But shopping for them just is not going to happen for a very long time for me.

So I was wondering … maybe someone has an old wig in their closet that they no longer wear, or maybe they might see one real cheap in a thrift store.  Maybe you could send it to me.  I don’t care what color or length or short or whatever.  Or if you see a cancer head scarf, any color or style.  I’m also supposed to stay out of the sun entirely and to wear hats, preferably large brim, so my shoulders are covered for any time I go outside.  I live in Nevada and we are approaching the hot summer weather.  Being a cancer patient causes my internal thermostat to go crazy.  I feel like I’m running a hundred ten degree fever all the time, so I freeze everyone else out with the mini a/c and swamp cooler.  The sun here is exceptionally bright.  I was also told to wear sunscreen, lots of it, but you know how expensive sunscreen is.  If you have any left over amounts from last year’s summer, it would be so appreciated.

Needed items: 
WIGS:  Old, used, neglected, no longer worn, any color, any length.
CANCER HEAD SCARVES:  These scarves can sometimes be found in thrift shops.  One section of the scarf conforms to your head and the rest hangs down.
HATS:  Large brim that will cover shoulders.  Stiff brims are better since the floppy ones flop down and expose the shoulders.
SUNSCREEN:  Preferably factor 50, any left over containers or sprays or jars.

My address is Elaine Swe,
P. O. Box 363323, North Las Vegas, NV 89036
.

The Kindness of Others (Frederica)

May 27, 2011

Dear Ms. Frederica of Illinois (and my other reading friends):

I haven’t written much lately.  I’ve been spending the majority of my days in bed sick and nauseated, making only a short daily trip out to my radiation therapy.  About once a week, I spend a full day in the cancer clinic getting hydration and stronger nausea medication to keep me going.  I have about 18 days of daily radiation treatments left.  I’m beginning to feel the effects of the radiation poisoning now, hence the nausea, and my hair is starting to fall out.  I’m told the nausea will be ongoing now until about three weeks after the radiation treatments have stopped.  I have the continuing nausea with little reprieve simply due to where the cancerous tumor is located which causes it to affect my stomach a lot.  At this time my most important duty is controlling the nausea and trying to eat.  They do not want me to lose too much weight.   So I don’t write much right now.

But I find it necessary, out of politeness and etiquette, to give an overwhelming thank you to Ms. Frederica of Illinois.  On one of my lowest days, I stopped for a second at the mail box because it had been three weeks and I was afraid they might close it or send things back.  Inside was a lone priority mail box.  I laid it on the seat beside me and continued on to radiation with my husband.  I cried most of the way to radiation, trying to convince myself to cancel the treatment – all between bouts of throwing up into a blue nausea travel bag the clinic gave me.  We arrived a few minutes early and my husband told me to take time to open the package.  Really – I was just too sick to care.  I figured it was some advertisement with a small useless product in it.  Imagine my genuine surprise and happiness to see a large floppy sunhat and some Avon lipstick, a pretty watch and some earrings with a matching necklace.

I cried again.  Someone was nice enough to try and let me be pretty for my treatments.  I have not dressed up in a long time.  I have not combed my hair.  I just shove it under a scarf.  I haven’t worn any make up.  I just stopped caring.  Then here comes this lovely package from Ms. Frederica which says “someone cares” and knows you probably need some pretty things.  These are the first new things I’ve had in a long time.  The hat was perfect.  They just told me it was time to cover my head and shoulders and stay out of the sun due to the chemotherapy, of which a second course begins May 31.  I took a few minutes, with my husband’s help, and put on the jewelry, the hat, and one of the lipsticks.  It may not seem like much, but it perked me up and I did look better in the visor mirror.

Thank you, Ms. Frederica.  As I walked into radiation, all the nurses noticed.  They said it was nice to see me not so depressed.  And they complimented the hat, necklace and said I looked so much better.  Those little things help so much even though they may seem like so little to others.  I want to thank you from the bottom of my heart for giving me something nice to make me feel good about myself again.  It's a bit of a coincidence, being you are from Illinois because so am I.  I moved to Nevada when I was very young, but I was born in Illinois and spent a few years there in my early 20s.  Your package brought back a bit of nostalgia.

To everyone else:  It may be a few weeks before I write again.  The next monthly chemo treatment begins May 31.  I’m usually really, really sick for about two weeks, and then begin to feel a bit better, but this time I’m told the nausea from the radiation treatment will still be there probably until the middle of July.  But I will continue to try to write and to certainly acknowledge the kindness of others shown toward me.

Elaine  

Wednesday, May 11, 2011

Chemo and Radiation?

Radiation and Chemo

Someone asked what the radiation and chemo treatments are like.  As much as I want to say it’s a dignified process, and as much as they try to make it so, it’s just awful.

For chemo, I started out in the Chemo Room.  It’s a big antiseptic room with rows of large lounge chairs, television sets with no sound, and IV tubing and poles.  They try to make it look like a big hospital lounge but it doesn’t quite pass muster.  They try to prepare you in advance with a chemo movie.  The movie tells you about the bad effects but it shines them and glosses them and the effects are presented by healthy smiling actors made to look like they are cancerous. Believe me, the movie makes it sound like most people continue to work and do activities and such, and the best way to handle it is just get lots of rest.  BULLSHIT!  The first day of my chemo was suppose to last four hours in clinic and then a bag on my side for four follow up days along with radiation treatments for 15-20 minutes every weekday.  Weekends are off, because doctors want them off.  Plus you need the weekends to get the vomiting and diarrhea under control.  They don’t tell you that last bit.  They do tell you to bring a computer, or books, or something to entertain you during that first day of four hours, plus a blanket and pillow in case you want to nap.

My dear sweet husband wanted me prepared for my four hours, so he packed me a rolling bag filled to the brim.  It contained salty snacks, a borrowed laptop with games, small pillow, baby blanket (cute of him), lip balm, hand cream, sanitizer, mints, gum … well, you get the idea.  He called every girlfriend I had and they contributed to the bag.  I rolled in with my bag, selected a chair, and was immediately hooked up to an IV.  The room was ice cold and the first thing they announced was - be glad you brought your own blanket because we are out.  I guess they keep the room cold for those experiencing nausea from their second, third or fourth treatments.  I snacked, played computer games, and then grabbed the pillow and blanket and cat napped.  I was told the first IV was a strong antibiotic, the second was an anti-nausea medication (that should have been a big clue to me), and the third was a combination chemo medication.  When those emptied, I had to sign a waiver for a waist purse that contained more chemo and a pump that I would wear for the next four days.  At the end of the session, I was walked over to radiation for my first radiation treatment.

Daily radiation treatments are supposed to be for 28 weekdays straight.  I was escorted to a waiting area with two dressing rooms and about ten chairs.  Each day, I have to change into a hospital gown from the waist up.  I sit in the chairs until my name is called.  I then go into the radiation room where there is a hard, narrow, uncomfortable plastic table not much wider than a ship plank.  I have to strip from the neck to the waist.  I lay down on the table nude to the waist with my arms high over my head, and my feet rubberbanded together.  The techs draw marks all over my chest and breasts, and then sometimes cover the marks with clear bandaids to keep them from washing off in the shower.  The techs pull me back and forth with the thin sheets underneath me until they feel I am lined up the same exact way each day.  Then they leave the room.  The machine hums for five minutes at a time in about four or five positions, and then it’s over.  The treatment itself is not painful but it is cold and terribly uncomfortable. 

The pain comes after about the sixth treatment depending on the area being radiated.  The treatments are not painful, but the area being radiated begins to hurt like you are burned on the inside, which is what happens.  Since mine is right at the center of my breastbone, it feels like burning heartburn that does not go away.

The first weekend following the chemo was bad, and then the sixth day of radiation just compounded it.  Every orifice in your body starts to run.  If you are prone to yeast infections or ingrown toenails or thin skin that scabs easy or anything – multiply it by the worst circumstance of it you ever had and then multiply it again by a hundred.  Your immune system is dying so such things run rampant.  But the pain form the radiation and the nausea and diarrhea from the chemo keep you so busy you don’t care, so it doesn’t really matter – it just adds to your misery.

So, that’s chemo and radiation.  Want some?

Really - Why am I still here?

It’s been a very bad week.  Puking, nausea extreme, pain in chest like a fire burning, head dizzy, barely getting out of bed with diarrhea all week, and very, very weak.  I decided, “Enough.”  My body needed to rest from the daily radiation and the week of chemo and the awful white blood cell shot to which I had an allergic reaction.

My doctor said if I had any problems to call him.  Call him anytime.  Let the nurses know and he’d squeeze me in before or after radiation.  Well, that was a bunch of malarkey.  I had the worst week of my life right after he said that, had to call urgent several times as instructed on my sheets for fever, nausea, vomiting, diarrhea, and guess what?  This week he was not there.  I won’t bother with the calls anymore.  I get the night service and they just route you to any doctor available.  It’s not even a cancer doctor, just whoever is on this long on-call rotation list of theirs.  One night it was a GP and the next I had a gynecologists.  They called in prescriptions to help with the nausea, but the scripts they called in required prior authorization from the doctors and insurance company, therefore they were not timely at all anyway.  I waited two days for the overly expensive nausea medicine that had to be pre-approved and justified.  Damn it.  I have cancer, I’m in chemo and radiation treatments – how much justification do they need?

So I quit the treatment.  For a few days anyway.  Maybe totally.  Who knows.  I still have the burning in my chest from the radiation laser.  But I ate my first solid food in five days, the nausea has subsided, and I drank some fluids.  I feel 100% better already.  I don’t know if I want to go back for treatments or not.

I’m constantly depressed.  I look over our lack of income and our outgoing bills, and all I can think is, “I’m this huge financial drain on my family, that we simply cannot afford.”  And guess what?  If you collect unemployment, you qualify for absolutely no type of help whatsoever – county, state, federal or otherwise.  I’ve tried SSD, SSI, welfare, social services, etc., etc., etc.  The financial advisor is at a loss as to what to suggest next.  We’re trying some obscure grants.  I swear, she sees the predicament I’m in and is baffled as well, knowing we cannot survive on this little with my medical problems on top of it.  The only thing she can tell me now is they will continue to provide care and treatment for me even when I have no insurance and cannot pay anything anymore – which is August 1st.  I totally understand why men who are the caregivers of the household commit suicide when their worth becomes more as a dead person than one who is alive.  Why take your family down with you?  If checking out means they will survive better, it seems honorable and practical.

For the next couple days I’m going to sit back and enjoy the Pepsi a friend brought me knowing it was one of my favorite addictions.  And think, “Really, what am I waiting for?”

Sunday, May 8, 2011

Happy Hell of a Mother's Day!

I waved goodbye to my Marine son last week, and kissed and hugged him so much that I practically flattened him.  I’ve been moping ever since.  The Marines reimbursed him for his total plane fare from Virginia to Las Vegas, and the truck drive back to North Carolina.  What a great organization!  With that reimbursement, he put some money aside to fly me out to see him before the end of summer.  I’ll get one last visit with my baby to cherish.

We’re still waiting for a court date for the adult adoption papers between my husband and Marine son.  The Legal Guardianship of the baby is all completed.

I started chemo-radiation on Monday, May 2.  I threw up most of the day Tuesday and Wednesday.  Finally got it under control with compazine on Thursday.  My chemo consists of Cisplatin and FU5 delivered through the Smart Port every fourth week.  I get a power injected infusion of Cisplatin and FU5 on Monday of the week, followed by four more days of FU5 that I carry in a bag on my side at home.  Then I get removed from the bag and given a shot to increase my white cells that causes my bones to ache.  The little bit of reprieve between the weeks of chemo and nausea helps somewhat.  I noticed that the radiation has relieved some of the eating issues – temporarily.  I was told in advance that it would.  I had gotten to the point where I could no longer swallow solids without a great deal of pain.  The radiation reduced the size of the tumor – temporarily – and I can eat again for a short while.  I’ve been warned that in about two to three more weeks, the tumor will swell from the radiation and may completely block the throat for a while.  Lovely!  Just lovely!  I still have not found a surgeon to put in the stomach feeding tube for when that happens, so my oncologist said he would just have the radiation team do it.  I have to wonder if that’s something they do on a regular basis or if this was just a “last ditch” offer.  It’s not like I have a choice.  Three surgeons turned me down.  No one wants to work past the tumor.  HEY SURGEONS!  I’M DYING ALREADY!  SO WHAT IF YOU KILL ME DURING SURGERY! 

But really, I’m only hanging in until I get the rest of my paperwork for the family done, and maybe one last visit in with my youngest son.

My older son is not handling this well at all.  He, too, is a former Marine.  But he has had some marital and child care problems.  That’s why his son, my grandson, lives with us.  We found out this week that he is leaving his wife and heading to Alaska to work on the pipeline.  I wonder if that is even true, or if he is just abandoning his family because he can’t handle anything anymore.

I began attending my old home church, near my father’s house, where I was baptized many long years ago.  I’m taking my husband and grandbaby, and hoping they will make a few connections to get them through my death.  My father seems to be holding stable.  The dementia has not progressed much.  But I know my husband is going to be overwhelmed when I die, with all these new responsibilities.  At least he can get some counseling and have some one to grieve with.

I applied for Social Security Disability and SSI like every one said I should.  I was turned down for both.  I didn’t work enough quarters to get SSD, because I was raising my children.  Since my husband is not disabled, then I don’t qualify.  And it seems that if someone is on unemployment then they make too much for SSI.  It doesn’t matter that more than half the unemployment goes for Cobra payments and co-pays, which leaves us living on less than $500 a month – and we pay a car payment, utilities and groceries out of that..  Yah!  It’s not enough even for that, but my husband picks up cans, washes cars, and even mows lawns for extra to get by.  Need your lawn mowed?  Your car washed?  Anything??

This past week of puking and hot flashes and nausea and aching has been hell.  I don’t know how many more I’m willing to go through.