I'm a Glutton for Punishment...

Yes, you're reading it right (I'm a Glutton for Punishment) ; but I bet you already kinda knew that by now!)  Well this is going to be one of those very medical fucked up problem posts about all of my bodies short comings.  Feel free to laugh at any point in this post; I won't be offended; in fact I will be pleased. Well if you cry; just let it all come out; it's probably good to have a good cry every now and then.  Its good for relieving stress and boy don't we live in a stressful world.!  a lot of it has to do with some very stressful people!   We can't let it get that way.  (Living in a stressful world)

Meanwhile my poor honey has to put up with my very high maintenance demands in order to ensure my survival each day!   These demands really aren't true demands but if he wants to continue to have me around which both of us feel is a great thing!)  I'm facing the fact; I'm pretty damned high maintenance.   I need my tummy bandage changed every other day, I have to drain my tummy from R2 several times a day, my tummy gets hungry as a side effect from one of my pain, insomnia, nausea, and heartburn medication (Santa Cruz strain), which worked amazingly on my pains.

(Sorry about this photo; it's very beautiful; especially the colors but Tonto is just sitting there either licking his penis or his asshole!) = Sorry about that!)

I also get the worst cancer pains ever and sometimes I get pain so bad that I let out annoying little screaming sounds that scare the living hell out of my honey.  I wish I could stop that sometimes!  It's  so incredibly painful that those little screams are practically involuntary.  I'm going to give him heart attack one day if don't get this under control.    That pain has to be under control because I don't want to make my life with my sweet heart more stressful!   Sometimes after I eat; I go through the worst pains!  It would be so cool if my intestines actually worked and I could eat.

I'm so thankful for his amazing job!  I'm just amazed by their compassion and understanding and this is a government entity.  I would  say what place it is but out of respect  for my honey's privacy more than anything (I will not!).  I am very, very, very, very proud of him and I love him with all of my heart and soul!). I couldn't imagine anyone taking anything away from him like his job all because of the love he has for me.  I hope other jobs are as compassionate as my husband's and of course my job too!  They are just amazing and very supportive.  Support and love help me to this day to enjoy everyday that I do have.  Thank you all for that!)

This weekend; primarily Saturday night; I woke up around 2 am screaming, crying and puking up a storm.  It was so very, very scary for my honey to see.  I was in so much pain and my poor sweety was running around trying to get medicine and try to make a call to hospice or decide if I needed 911.  I was really suffering in pain and we  both were scared.  Sometimes if I am in a deep sleep and because I don't snore, my honey has to wake me up to see if I am still alive.   Thank god we were able to control the pain (Vaporizer= Romulan)  The Romulan knocked me completely out; I slept like a baby and haven't done so in many days or weeks?

The next morning (Sunday) we called Hospice and told them  of the situation we had last night.  I was having horrible back and kidney pains mostly and thank god I was able to sleep through all  of that pain despite it all!) It was suggested that I just come into ER and get the pain managed but you all know what an incredibly hard head I am about that!  I just can't go through getting poked, stabbed and my veins mutilated further in the ER.  They don't seem to care about me having a picc line and they always tell me each time that they are not authorized to use my picc line?  It's there for a reason (PLEASE SAVE MY POOR VEINS!)  

I spoke with some very, very sweet nurses on the phone who seemed to have lots of compassion and love for me.  They understood completely as to why I didn't want to go into ER.    I do love great nurses!  There just are not enough of them!)  They felt I did need to have a nurse come out and evaluate me since I wouldn't be going into ER unless the nurse coming out felt I needed to. 

All day long (Sunday) we had to wait for a nurse to get here and she didn't get there until after 5pm I think?   I was told that over the phone that it would be this one very kind nurse whom I love would be by shortly since she works close to my neighborhood and I later got a call that she couldn't make it and that her co-worker would.

I got a call an hour later with a totally different nurse asking for directions to my home.  I gave her the directions and she was here with in about 40-45 minutes. It was kind of late and delayed but I didn't care; I just wanted to have a nurse to check me out; I didn't care; as long as I get to stay home and heal.  I was very questionable about whether I was  actually worthy of a nurse visit since I can still walk around and do things?  I just didn't think my pain warranted a visit  from a Hospice Nurse or ER visit. Yeah I felt kind of guilty?

When this new nurse had first arrived (on Sunday), she was kind of a weirdo.?   Excuse my language.   Sometimes freaky acting people are weirdos; hey I'm a weirdo in my own sense!, so's my strange big foot kitty cat)  Oh god I hate calling people names but I can't help how awkward our  initial meeting was.  She had finally arrived and my honey had wanted me to call him to let him know that the nurse had arrived.  Yeah I was supposed to call him and just let him know that the nurse had it under control.   I was basically supposed to call him the minute she showed up.   I let her in and tried to pick up the phone to call my husband but she stopped me and asked if we could  1st just go through all of her questions first?  It was a very awkward moment for me; I may not even be remembering all of this right (so please bear with me!)   but I do think her irritation of me started about then. 

I really think she was very irritated at me.  Maybe I didn't appear to look like I needed the help of a Hospice Nurse.  I know many people are shocked to hear that I have advanced cancer; perhaps she thought I was one of those people who fake having cancer to get more drugs?   Well that certainly is not the case with me.   I was told that I had to have a nurse come by and check on me because my symptoms were not so good.  I needed to be checked on.  OK I thought.  I am so bullheaded and set in my ways and sometimes I feel invincible to needing that much help; so I did feel a bit guilty for having a nurse come out to check on me.

One thing I am sure she was very irritated about was that I wasn't utilizing the  Delaudid as I should be for breakthrough pain.  I am using it now for breakthrough pain; I just didn't understand what breakthrough.  I had a nurse come out on Sunday (she was kind of a weirdo/trip?)LOL  No I'm not one for making fun of other people but I do become quite fascinated with many and why they react the way that they do?   I just sometimes wonder why some people act the way that they do. 
.

 I was so stressed out.  Well she had this huge medical bag which she placed on one the chairs in my living room and then she sat on that same  chair  (almost falling out of the chair because of huge book bag or medical bag that sitting right behind her bottom with only a few inches left to sit because of the huge pack.  I asked her I could get her another chair or find a place for her bag but she immediately cut me off and said "NO".    Then I asked her if I could get her some water or anything to drink?  I was being hospitable and thankful for her coming out to visit me.   I didn't think I was worthy of a visit and I felt extremely guilty for having had her come out.

I couldn't help but think of her as acting kind of weird as she  put her bags like that on her chair and nearly falling out of that same chair?   I think she must have been afraid that I might  have the urge (since I was stoned for my extreme pain= it was working for me!)  to go through her bag since seeing my joints, bong, and pipe just sitting there waiting for duty; maybe she is one those who  has been misinformed about what cannabis does for patients?   Did she believe everything the Federal Government believes or had said in the movie Reefer Madness? I wondered.

She must think that it makes me want to try something stronger (Gateway myth) and that I might steal her medical bag in order to get more free pot for me or sell her stuff for drugs?   I would never steal anything from anyone.  It was incredibly weird for me and for someone to think  that I am criminal element?   We do live kind of in the ghetto and I guess my honey and I might even be considered ghetto?   I don't even like taking drugs for the pain that I already have?   I can't even swallow any pills?  OH, I might inject them; but wait; my veins suck; I couldn't do that! I hate needles more than anything?  I am such a chicken monkey when it comes to even getting stuck with even a tiny little butterfly needle!)    

I would rather work hard and earn what ever I happen to want than to flat out take something that someone  else had worked so hard to have.  They are  only material possessions to me and are not filled with love which kind of makes them useless to me.   I do love music more than any amount of money!)  I want her to have her medical bag so that she can continue to help nurse people and save their lives.  I would never steal her  medical bag.  Our home has too much in it; we need to get rid of things not take Medical bags (that we don't need!) ; we don't need any more of that crap?  Love is worth so much more than any amount of money or material possessions or Medical Bags!) LOL.

Well anyway, back this nurse; she kind of walked funny too  (Well I walk kind of funny too; Tonto walks hilariously= so we are technically in the same boat somewhat.) and she still had this strange glare at me.  Every time I would answer one of her questions she was silent for a about 30 seconds or so and it made me think that I needed to go on and not stop my conversation or what ever it was I was talking about and that perhaps I didn't answer her question right?  Her presence and energy kind of made me feel just a little bit uncomfortable (I was feeling just a little bit of stress and just couldn't help it)  I felt like I was working hard for this person to feel any kind of compassion for me but I don't know I think I was more or less a computer maybe?  I am human; in fact we all are.

No matter what kind of degree someone has; we are all human; no matter what color any of us happen to be.  I don't understand why so many are racists when many dark people don't have a choice of what they are born to look like?  Why blame somebody over their skin color when they had absolutely no choice in who their parents were?  I don't understand how people can hate others over something that uncontrollable?   What about finding out what is in their heart and souls?  They could be the best friend you could ever ask for?

OK, I got off topic just a little.  because of the way she  had looked at me.  It was as if she was expecting that I was lying about my pain I was in so that I could just get some more drugs?   I can't put my finger on it but I felt that this woman didn't like me or just didn't understand me.   She did tell me that I needed to use the Dilaudid much more for break through pain rather than emergency pain as I have been guilty of doing.  I guess she knew I was a dumb ass when I told her that I thought that I was supposed to wait until the pain got high before I decided to take break through medicine.   My key once again is to be under control with my pain.  It's cruel and unusual punishment for me to make myself suffer like that.   Sometimes the pain is so great that I can barely breath as if it feels like I had just been cut up from all of my abdominal surgeries (all 6 of them!).  Yeah. I wait until the pain hits an 8 or 9 before I consider getting the breakthrough pain medication out.  The key for me is to be one step ahead of the pain; instead of 8 or 9; take medication at 4 or 5.    I will definitely do this!  No more pain getting out of control for me!  Well she did my vitals; however, I did have a small fever (100 degrees).

I don't know if it was that bad but I didn't feel comfortable with this nurse as she continued to ask me tons of questions and sometimes I couldn't remember but I tried so hard to recollect what was in my tiny little chemo brain.  All those questions were starting to stress me out and frustrated me.  My honey had wanted me to call him right away when the nurse showed up but she would hardly let me pick up the phone to call him as she looked kind of mad or irritated that I would make a phone call in her presence.  I just couldn't do it because I had to answer hours and hours of questions?  Or so it seemed.   I got scared and decided ummm I will call him later.   Well about 20 minutes later the phone rang of course right in the middle of her interrogating/questioning me,.

OK sometimes I forget to take my medicines and yeah this could be my fault that I'm sick?   I do know that she was irritated at that but I sometimes can't help that I get distracted from getting everything done these days.  When you know your days are numbered should have a "get out of jail free card?" right?  Don't mess with me because I am forgetful and extremely disorganized? LOL

She seemed to get irritated when I stopped answering her questions as I quickly stepped away to go answer my ringing phone.   I think she felt I needed to let it ring into voice mail so that I didn't waist a moment of her precious time.   I answered the call from my honey anyway; I even told  her that I needed to get this (my honey might have some relevant questions for you (Nurse Angry) call and she did seem incredibly irritated at me especially when the phone have started to ring.  I knew right away that it was my husband and of course he had other questions that  he wanted to ask the nurse but she was very irritated at me for wasting her time while I was on the phone so I had to hang up with my honey almost right away.   She expected me to stay there, answer all of her questions and DO NOT ANSWER THAT PHONE!!!!!.   I answered it anyway, I wasted an entire 25 seconds of her time= I was very sorry!    My world revolves around my husband and NO she can't do anything about that; I just met her so I know my world doesn't revolve around her even though she felt that it should?  LOL   Hey it was my husband and he did have some important questions to ask but I had to cut him off since we were busy answering tons and tons of questions about what's going on with me.

Maybe this nurse is just having a hard day; she's bummed out that she has to deal with  stupid patients like myself so late on a Sunday evening (5-6pmish?)  I'm  too nice and such a wimp sometimes and it's hard for me to stand my ground sometimes because I am too nice.   I feel guilty when I feel that I'm inconveniencing anyone and I was seriously inconveniencing this poor nurse.   I felt so bad and guilty about that.  She would have been able to go home and enjoy her family if it were not for my troublesome dumb ass! 

She showed very little human compassion or personality with that visit on Sunday.  I did tell my honey about this nurse and how uncomfortable she had made me feel.  I just couldn't put my hand on it but she was kind of nice I guess but I didn't like being around her after a while because of the way she would stair at me and it wasn't a normal kind of stare.  It was incredibly strange to me.  I can't put my finger on it but it was such a strange stare.  I don't know why and it could just be my Paranoid chemo brain.  She might just be a very nice person and I just didn't pick up on it; maybe because she was having a bad day having to work on Sunday evening on stupid patients like myself.

Miss Blue Belle didn't act her normal self either, she didn't go and sit next to the nurse as she was treating more or actually asking me questions.  Blue Belle stayed by my side; she didn't once go over to this nurse?  Tonto checked her out but that was it from him.  I think Blue Belle could sense that this nurse meant serious business and didn't want to get in the way of that.  Smart, smart, brilliant little girl!

Well the next morning my regular Hospice Nurse came by (Oh how I love her= we have so much in common!).   We even drive the same car and same color!  How cool is that!)  Anyway, I don't tell her about my uncomfortableness with this nurse that had stopped by on Sunday.  It was just another day and thank god things can start to be done about all the pain I have been having.   I just wanted to forget what had happened yesterday and make today a more amazing day.   She got my Methadone increased by 1/2ml.  So now it's 3mls twice a day.  Since the Methadone tastes like nasty chemical shit (it's hard to get that after taste out of your mouth but I did find that Pomegranate White Tea has been a blessing. 

We then changed the bandage and I was informed by my nurse that my doctor/oncologist found that the extreme pain I had been feeling was because I had some sort of Staph Infection in my bladder and kidneys and maybe beyond in my body.  (this was determined from the pee sample I gave last week!)  I wasn't faking my pains after all!)    I was originally told that we would need to get another PCA pump in order to distribute this intravenous form of Antibiotic.   I would also have the antibiotic delivered to my home.   My nurse changed my picc line dressing and was unable to draw any blood from my picc line and we had just gone last week to try and flush it out so that the clots wouldn't block it up again; the infusion nurse was able to get a blood draw within seconds but 2 weeks in row; we still are unable to draw blood from me.  She made an appointment for the next day (Tuesday) for another nurse who is excellent at finding and locating veins from even the most difficult to draw.  I was excited at meeting a new nurse who could do that for me!


Anyway, later on we got a phone call from someone in the infusion center that we needed to do the very first dose of Antibiotics there and my husband be trained out to hook up the line, prep the line and so much more!)  at 5pm and it would take over 2 hours to do.  I also found that it would be 7 days of twice a day, 2 hour drips from this baby bottle looking thing with a balloon inside filled with the antibiotic.

My sweetie is so amazing!  He stayed with me the entire 2 hours and did go downstairs and waited a little while for my prescriptions.    Check out this bag inside this baby bottle looking thing.  It's pretty fascinating and I hope  to take more photos of it.  There is this little balloon inside the bottle and as it is diffusing; the balloon gets smaller and then you can see almost a little rib cage with holes!  Of course the balloon is more deflated.

Tuesday morning; I had an absolute blast when a friend of mine  who came to visit me.  We had so much fun together.  We went on a walk around my little complex and I took the kitty boy on a walk through all the beautiful colors of leaves falling all over the place.  Just a few days ago; all of those leaves were on the trees in all fall colors.  It was amazing  to see and I loved being outside just viewing all that nature has for me!  Those are real gifts!  We also got on the bikes and took little bike ride together and we also got catch up on all that we are both going through.  My blog helps a lot with that.  I want my family to know what I am going through. 

I got called from my nurse and she told me that a good nurse would stop by later on = between the hours of 4 and 6pm.   The rest of the day my honey and did some house cleaning together.

Well later on after 4pm that same nurse from Sunday called and said she was on her way.   I have to admit that I was kind of bummed.   It took her a little over an hour to arrive and she was much more cordial with my husband and I this time around; but she still insisted on sitting on top of her medical bag; I offered up the table and I even cleaned it off for her so that she could place her heavy bag there; it wouldn't be on the ground where my klepto dog or cat couldn't go through it; I don't remember if she used it (the table)or not but she still didn't want to do more work than she would have had too.  I had asked her on Sunday if she could order more narcotics for me since I was running low; primarily on the Dilaudid and my Celexa (crying pill)  She kind of looked at me like I was a junky wanting her to go order my medications.   She could order them from the pharmacy; I'm not asking her to go on the street corner and try to find me some crank, heroin, or some Oxycotin pills?  Well she just sat there emotionless and looked at me silently and then asked who normally orders your medications? My honey did ask me to ask her that but she just stared at me so intently and I finished her silent part of the sentence that I will call the pharmacy myself.    Oh god it was so weird and then she gets sent over here again on Tuesday.    She was OK this time, much nicer than last time.

She wasn't as good as I had hoped in finding a working vein on me.  Not like some of those confident phlebotomist from the lab where they find a vein in 3 seconds, stick you and your done!)  One didn't work but the second stick did.  My husband also asked if she could order something while she was here and another very  blank stare at him and then he continued; I will call the pharmacist.   Some people are very hard to read and this lady certainly was.  She did have a nice smile after she was done with me and ready to leave.  I wished her a nice Christmas and New Years and basically did everything in my power to let her know how very thankful I was that she came over to help me.  I tried so hard to get along with her this time around and to make things as easy as I could for her.   I didn't want her to be stressed out at all.   I showed her where all of our equipment was as she tried to get some blood samples and my vitals.  We did find that a tumor is growing on my left side or left lung because I don't breath as hard in that area of my lungs?

Well last time I wrote my blog I totally got my left wing wrong; it's on my right side!  I'm still NO right wing; I just happen to have an angel right wing in honor of my dad.  My favorite right wing person!  That's pretty funny!  How come no body noticed that?  Well I am left handed so there's my left wing.

I'm hoping that next week we can get my pain pump turned up (they are going to refill it again.  Want to see that again?





Maybe watching this can make some of my pains go away.  I do have it under control with a strain called "Pineapple Express".   Tuesday was such an excellent day as far as my pain was concerned.   The little joints I had smoked before my friend came over really came in handy in controlling the horrible nausea and pains.  I had such an awesome day yesterday and today was more for relaxing and catching up on sleep.  I slept most of the day;  I think I woke up at 2:30pm.

For lunch today, my honey was hungry for a Falafel.  I had not had one is so very long.  At least 13 years.   I accidentally got a Falafel sandwich with cucumbers, this green grass looking stuff (cilantro?), tomatoes, and this hush puppy looking ball that was  cut up into many little pieces and of course lots of lettuce.  That part I was OK with.   My honey ordered  something similiar to what I had ordered and his didn't have any hot sauce on it, my honey got his hot sauce on the side) well that's just my luck;  Mine more than likely had a whole container of hot sauce and then some as it was all over my sandwich!(    I tried to eat mine and I get an entire mouth full of this incredibly hot sauce; It totally burned the living shit out of my mouth and my throat and talk about  severe heartburn!  It was so freaking horrible!  Oh did I suffer for that one!  I have no idea why they would douse a good sandwich with that nasty crap!    I thought my beautiful long eyelashes were going to catch fire; UHHHH it was that hot!  I was pretty painful and miserable because that hot sauce felt as if it was burning a hole in my horrid intestines.  It was freaking painful.    I puked up fire this time and then I had to use my bong (with the Pineapple Express, I got one of those  really good hits (I was coughing up a storm; got very, very thirsty)  and surprisingly all that coughing actually did something to my taste buds  which actually helped on that painful burning; Right now after puking a few times; I feel so much better!)

We have wondering and beating ourselves silly as to where I could have gotten the Staph Infection.  We have been very diligent about washing hands and careful when going out in public if needed.   I could have caught it anywhere but I'm betting I could have very well gotten it from a neighbor girl who loves to hug me and hang out with me sometimes (she loves me) when I walk Blue Belle or Tonto; but she loves to play in the dumpsters here at our complex.  She wears the most  filthy clothes and I wished so much I could call her into a show that could help her since she is staring high school next year and she doesn't mind being called the "Dumpster Girl" or the "stinky girl" which the kids are also using to describe her.  Now she does take Marshal Arts and is a brown belt?  She can kick ass!)   I actually did a google search for Dumpster Girl and found that there are 2 sites called "Slut Dumpster Girls" and "Dumpster Slut Girls" and then it gets grim where they talk about young girls bodies being found in dumpsters. 

  I wished so much that I could help her with all of her problems  but anyway we have been warning her about the dangers of going through the trash as she has been doing.  All of us neighbors; I have even gone to the point of just dumping Blue Belles and one of our neighbors (he refuses to clean up after his dog; I won't name names) dog's poo but I clean up most of the time now for his dog too and I just dump the poo out of the doggy bags and into the dumpster so that she might learn her lesson and not go there anymore.   It's all so disgusting and some the crap that many of us throw away should never see the light of day! and she just wants to climb in there even if the Ebola virus is in there.  She doesn't care?    I don't even think she washed any of the clothes she got out of the dumpster.  She just wore them and boy do they look absolutely filthy.  I can't hug this girl any more.  I just can do it for my health. I love her so much, but I can't do it.   I don't know what to do about this poor young girl . She even claimed to have found some used make-up that totally broke her face out I'm quite sure.   Ewwwww!   I wish I contact either "Clean House" (I have heard her house is a total mess), or getting her on the Fashion Intervention show called "How Do I look?".   She seriously needs an intervention and I love her so much and wished things were better for her.  It tears my heart to pieces that she devalues her life as she does and I'm fighting hard for my life.  It just doesn't make any sense to me?

It would be so cool to have her on the show where others can shop for her and find her some classy pretty clothes, nice make-up and hairstyles rather than her looking so boyish and filthy in her current wardrobe.  She is a very beautiful young girl but I don't understand why she won't quit playing in the dumpsters and looking for free stuff.   The free stuff is much more important than her health?   She makes her own jewelry out of heavy tool stuff like bolt, nuts, chains and other heavy things.  It's not really attractive jewelry as it is creative?  She always wants to hug me and she's so stinky and dirty; so I don't care and I just hug her because I do love her.  I wished I could have a sweet daughter like that.  There is no way I would have her digging in dumpsters as she is doing and bringing that crap in the house.  I always ask her what are you planning to do with all that junk?  My honey and I have told her all kinds of scenarios of how damaging it is to be digging in trash as she often does and the diseases she could catch as well.  Much of our medical wastes goes in those trash cans too, old spoiled foods, fecal matter from dogs and humans.  Pretty nasty and I hope she gets to change before she goes to high school next year.

My honey and I have been celebrating Christmas everyday.   We even decorated Tonto's Christmas Cat Tree and he couldn't be more pleased!   I'm definitely not asking that anyone get me anything but a card, email, memories, photos, or just phone call or even a text for Christmas.  I just want to live and enjoy my life with the man of my dreams.  Perhaps in another journey again?

Peace and Love to all of you and sorry this post was as bad as it was.   Hopefully my pain will subside more and all that we are doing for this pain is going to work!  Power to the wonder plant!