My Awesome Husband Saga Continues....

I'm going to tell you all the most amazing true story about what my husband did for me this week and of course one good friend who helped us.    Yeah it could suck to be me if I didn't have such a bad ass husband by my side to slay some cancer ass if we can!  We always have hope and I'm also very aware of what we are facing as we enjoy every waking moment we can with each other.   I'm so freaking thankful that his job is allowing for him to be so passionate enough to take such great care of me.  He's better than  most of the nurses and I trust him a lot more in helping with so much that he does.    I can't help but gush about how wonderful my husband is to me as I survive what seems to be the most impossible.   How can I just be walking around on such skinny little match stick legs?  How can I still be alive with this big huge knot looking thing on my right shoulder or have such crazy looking  medical devices just making room in the shrinking body?  Life really is a miracle for me as I go from one part of life to the next life.   His undying love for me never stops a beat and it always makes me smile from the gut of my cancer ridden stomach to the smile that he  creates on my face!)  Of course he always makes me laugh and I always knew I would marry the first man who could really make me laugh and of course tell me the best stories.    He just has this way about him and I'm positive there are hundreds more who swear by him; he is one of those rare men that you don't find just everyday.  Once you have him a friend; you have him for life; I could never be attracted to anyone else which will make waiting on the other side all more harder.

I guess it was about Tuesday the day before when I got a phone call that I needed to go in the next day (Wednesday) to get my pain pump  refilled; well we've been getting the most amazing rain storm and the temperature has been very cold; perfect I would say if only I had the strength and meat on my bones to sustain me enough to go snowboarding;  OMG! would that be so freaking awesome!  so yes all this beautiful wonderful rain has been killing me; I've been dreaming of snowboarding quite a bit of course.  I hope all the people out there are having a blast!  Anyway, I told my honey immediately that we needed to fill my pain pump and I was kind of worried that this might kink up some plans, but no he made it all work!).   He was on the ball and how very proud of him I am. for that; I don't think I could ever expect any less of him.   I feel that every woman  fighting this monster called cancer needs a Jimmy!  The world would be so much better!  I hope there are many other women out there who also have their Jimmy's because suffering with this disease  alone is nearly impossible; there really are lots of heroes out there fighting cancer along side us that we need not leave out or forget about and I know I'm not the only one!  

I'm actually in awww of my knight in shining armor as tears are flowing down my face when I say this so proudly; he really had the day so well planned.   I could so nothing but smile and giggle at the cute things he does for me.  It's so sweet!)   He had called  a close friend of ours  to  come pick us up and drop us off at the convenient front entrance where he could wheel me up to the 4th floor.  I was actually very sick on Wednesday and I was not at all feeling good.   I had my puke bag ready and we we had been panicking some that I might end up in ER if I couldn't get the puking down; we have been trying everything suggested  for my nausea and sometimes nothing works and then I just grabbed a bud and put it in my water pipe and smoked it (OK this was before we left for the hospital; just like a chemo brain thinks; the order of things get mixed up sometimes!)

My honey was planning to find a wheelchair  in order to wheel me up to the 4th floor where  he could first meet up with his point of contract (I can't use names and must keep anonymity  for these helpful souls at the hospital; I love them all so dearly for what they do for us  and would never endanger them for helping me survive this disease those extra days.  I'm always grateful for more time and I'm getting it right now.   Anyway, my honey waited first with me until his point of contract met us with us so that he could drop me off to the  pharmacy to pick up my heavy duty pain medications which I was running low on.   Actually he sat and waited with me until his point of contact (an incredible male nurse supervisor?) who always manages my pain pump; it really is a new thing and many know nothing about my weird internal contraption so it's important to have all the right people there when my pain pump is ready to be serviced like this.  I only waited maybe 5 minutes, when his point of contact arrived to take me downstairs to where I would get my pump refilled and even turned up some so that I wouldn't have to endure much more of the Dilaudid.

In a strange irony I was not yet thinking of ditching using them as I thought more and more about the horrid tastes I have  had to put up with us with further and makes me gag just thinking about it? I've been getting so sick and tired of having to deal with killing the horrid taste of the Methadone with pickles that were actually tearing the living shit out of my gut.   Since I had to get a refill in the pharmacy of pain medications anyway (see I have to use Pharmaceutical Drugs to  help as I have been cut open a total of 7 times and no one can convince me that with this crazy shitty cancer growing inside me for going on 6 years of this 8 years battle  of being cut open and stapled back together; how much more can a human life  take of this?   I have faced the reality of knowing that I can't survive this comfortably with out pain medication; it would be cruel and unusual to make me suffer that way; but why are we allowing those in other states to suffer needlessly?

Medical marijuana is also helping me curb the nausea which is totally unreal.  It takes certain strains and I'm grateful my friend just found the right one.  It's working for right now.  Everyday is a new day for me.   I'm still trying to find that out; it's kind of my life experiment?  Pretty fascinating I hope?  I like to think that I don't go through these sort of things for nothing?   Well while I was being set up for my pump refill , my sweet honey was down in the pharmacy picking up my pain medications.   Now he had even coordinated this move which used to take him a total of 2 hours and irritating to have to do twice a month since they wouldn't dare give us more than a 2 week supply most of the time.  I actually don't have that addictive personality but yes some drugs do hook people in a horrible way just going cold turkey and I found that out when I got my pain pump inserted and had to deal with Fentanol withdrawal which was not fun.      My sweetie got me through that ordeal too!  He makes feel so much stronger!  I am one lucky woman to have such a man!

Well the last couple of months of being on hospice care has been much better.   So back to my internal pain pump refill; my honey had just refilled my pain medications and in an instant he was already there in time for them to stick the needle into my tummy in order to fill up my pain pump.  I reached behind me for his warm hand to hold and he grabbed my hand just as I was about to start screaming from the size of the needle.  Yes, needles still terrify the living shit out of me! OMG!   I have no idea why that needle makes me cringe and cry each time but he grabbed my hand and made it all better!)    I was so happy my pain doctor even came down to check on me and was able to accommodate turning up the pump so I that I might be able to cut down on the Dilaudid.   

We were practically in and out of the hospital with everything we needed in less than 20-25 minutes!  He even refilled prescriptions and most importantly; we got my  intrathecal pain pump (huge Skoal Can on my Tummy) refilled.   My honey helped me into a wheelchair and  then he wheeled me right down the hall to  the front waiting area where our ride was waiting.  He helped me into the car from the wheelchair and we were on our way; we made it home in no time.   I know I should just take that shit for granted; but I just can't; I appreciate all that he is to me and am grateful for such a wonderful man.

I was a little panic stricken over how I would manage my pain control since I was not down with taking oral Methadone (it has the most putrid taste ever and I can't get rid of that taste in my mouth unless I eat pickle which are overly acidic in my poor little unworking tummy.  My tummy is basically a general holding area for puke because if anything does make it to my tummy; it's right to the puke bowl in about 5-15 minutes.   It sucks and boy does it get tiring I'm sure of listening to that nastiness.

My honey has another friend who is also in my similar situation; he  too has a sweet wife whom he takes very good care of and he  loves her  dearly; she needs his help in her life and its so sad to think of her loosing him and I hope and pray she has many more  family and friends who can  help take care of her; yes there are always those in far worse situations than you ever thought that you would be in.  In life you can either take the position of a victim (which is quite annoying I must say! = just my humble opinion)  or you can try to conquer what you can; do your best!   Work with your partner which I love doing each day!  He makes my life the best!  He rules!    and it does prove that you really do need lots of love to get through a Cancer Diagnosis; hell we all need it in life. 

Alright back to my awesome husband. We are talking about our friends; they  are dealing with what they have to deal with as well.  His friend was also not down with taking either of those oral nasty liquid medications; they had burned his throat to no end and were more than likely doing the same for me.  My throat always burns and I always have the worst heart burn every.   He too was prescribed the exact same pain medications that I have prescribed for me. You can't quit cold turkey on the Methadone because I think it takes like 24 hours for you to relapse and to seriously have the worst pain ever and then have to deal with trying to catch up on the pain you could possibly suffer from being eaten alive by cancer.  I was facing having to deal with severe cramping from the cancer  pain and scar tissues from ALL those surgeries that  I  have had.

I have also  had enough of the Methadone and of course that horrid, horrid, taste; oh and freaking out when the actual medicine makes it on top of taste bud; then panicking to  try hard to stuff a pickle in my mouth fast enough to in order to get rid of that taste; ewww that taste;  it makes me  yack just thinking about it!(   Oh it doesn't even stop there,   I'm also puking up pickles which really didn't feel so good coming back up and they do have this funny taste when they come back up.  I almost felt like a cow chewing cudd and regurgitating?

  I just could not stomach any more of that Methadone .  There was no way in hell I was going to take it again; so I refused and was now going to take my chances on quitting cold turkey.   I couldn't put that shit in my mouth again.  My honey called the hospice nurse the following day  to let her know of my stubborn ways; that's OK to be that way; you can only take so much in life.    I actually couldn't stomach either one of them.  The Dilaudid is so incredibly overly sweet and chemically tasting like cold medicine? It's sweet in a nauseating kind of way!  Imagine having to take cold medicine every single day; every hour on the hour sometimes; of course I couldn't do that; 8 doses has been my max I believe.  I have had lots of painful days to deal with; that's makes it hard for me sometimes to do anything but veg out on the couch.  Despite all this; one man makes me more than happy to keep on trugging through this!  Oh how I love him is such an understatement!

Anyway, my hospice nurse came up with the most brilliant solution ever; actually my honey figured out the perfect way to administer my nasty ass Methadone; through my G-Tube!  Yeah!  I didn't know we could even do this but he can give it to me in less than 1 minute.  Since my G-Tube has been mostly for decompression I have to sit still for about 20 minutes and try my best not to drink anything.  He gets a syringe and unscrews part of my G-Tube and then screws it back in after he gives me my prescribed dose and then he amazingly uses another large syringe with just enough water to wash it into my tummy and the rest has been history!    I'm not suffering in nearly the pain I had been and only wish I had been doing this all along! Wish we could do the same for the Dilaudid?  We will see.  For now I'm happy see more of these wonderful rainy days where I can day dream about our fun adventures that we have had together! and we have had a lot!


I also feel that music can help so many of us to heal.  Just turning off the TV and listening to music can improve your mood significantly.  Watching some of this worthless crap on TV can make you dummer, maybe a little psychotic, some even wanting to murder others; how could anyone put shit on TV to make people hate one another?  How can they live with themselves selling their soul like that?; especially many of those news programs; don't ever believe everything you hear and always question the source.   It sucks that more and more dishonesty is coming out in journalism?   It just takes a buck to change a fact? That's just the way it is.  Look at all those insurance commercials; we aren't paying for more coverage; we are paying for total annoyance ;all those worthless, monotonous ads on TV that are intrusive, loud, and totally obnoxious.  Turn that shit off and Listen to some good music instead of lies!  Rock out!
Peace and Love to all of you!

The Scary New Year....

My sincere apologies for the language I'm going to get off my back (tumors) and spew but it's totally necessary.  I've been hurting quite a bit these last couple of days.  Yes, these last couple of days have been trying to say the very least; I have been having the most horrible cancer pains in my back, abdomen, and then these horrific pain spasms in my asshole!)  Why  do I have to have cancer in my precious asshole?  It's just not fair.  I'm not an asshole to anybody; I don't think I am? What's up with that?  Is that any dignified way to die?  Why do I have to have shitty, crappy things go on with my body?  Don't get me wrong, I'm still smiling and laughing at some of these predicaments I get myself into; but sometimes enough is enough, although the pain is nothing at all to laugh at.   I have not had a poop in over 2 weeks now and its kinda sorta scaring me and I've dropped more weight? I am now weighing in a 91.5lbs which is a bit more scarier than before.    I am so weak that I can barely make it up the stairs now and am sleeping a lot more; it seems I'm always sleeping.   That's why I have barely gotten online to check on all of you!) 

Well the two of us did have a fabulous  little Christmas together and I was so  thankful to have been able to cook us an excellent little Christmas meal for both of us on Sunday.  I had  just a few bites of Cornish game hens,  (there is no way I could have cooked an entire turkey!) excellent dressing, (I accidentally got Turnips instead of my honey's  favored Rutabagas; they still turned out excellent!); The whole mashed potato mixture contained boiled Turnips, Cauliflower, and baby multicolored potatoes, and of course Turkey gravy and canned cranberry sauce to compliment our wonderful meal together!).  I wasn't able to hold everything in or gain all the weight that I had hoped and prayed to gain!)   Blue Belle even gained weight from the medication the vet had prescribed to her.  She gained a whole pound in 1 week while I lost about 10lbs.   How does that  happen?  I saved one of the game hens so that I could more easily give her those pills that I would never want to force down her throat.  Instead she wolfed down a small piece of chicken containing her medicine each day this week.  We still have a few more pills that she's working on finishing; but we have not caused her any stress in giving her medication.  The only stress she has felt is having a damn thermometer shoved up her ass!  I do fondly remember how much she hates one of those cold things shoved up her ass!)  It's so unpleasant to her but my honey said she did better the second time around.   He ear puffed up again the day we brought her back to the vet (for the check up and now she has another appointment on the 4th (maybe for surgery?), we don't know yet.  Either way her broken ear will somehow get fixed or forever be a broken ear?(. 

As for me and my health problems which seem to never end; the puking has not stopped completely although I can do little things that help for a couple of hours for pain.  I still smoke my occasional joints that help with pain, muscle spasms (Volcano Vaporizer).  I don't think I could have made it this long with out my beloved Cannabis medicine.  It's definitely made my life more easier to tolerate with the pain and suffering.  I just wished other patients were able to utilize this powerful medicine as well.  I hate knowing that others in other states are suffering all for their politician's greed.  That's pretty much what it amounts to is greed.  They allow the dying and suffering all for greed.; someone else's definition of quality of life?  Which is basically materialistic things like a bigger house, another home, a yacht, a private jet and so much more; just pure evil greed.   They will never be able to take any of that shit with them when they are gone; I do know this as I'm facing death right in the face!   NO a patient may not utilize medicinal cannabis and no they may not have a better quality of life; they may only take hard core pain medicines?   How can someone so full of greed and hatred make those kinds of decisions for others who truly need to stop suffering in pain?  I can't believe how we worry so much about prisoners who have death sentences more so than we do our own citizens who on hospice care or are sick and dying?  I don't understand this completely but I sure hope it changes one day soon.  Our country needs more Peace and Love!  You have to have been able to love fully in order to enjoy this life.

I'm still trying to eat although today I've been feeling quite a bit nauseated as my sweetie is helping me sooo, sooo, very much in giving me my intravenous dosings of Zofran (Ondansetron Injection- 4mg).    I made it through my 8 year Cancervary (Nov. 15th), my 8 year wedding anniversary (Dec. 3rd) my honey's birthday and then Christmas and now New Years seems to be a bit scary for me as I watch my body start to deteriorate right in front of me.  I hardly have any muscle tone in my legs and am having a hard time getting up the stairs or even getting dressed.   

Today, the Chaplain (social worker from hospice) may be visiting me and finding out if I am more ready for my transition to the next life/journey.  Death can be very scary for most of us when in reality it is very natural; we will all have to face this inevitable fact; some of us much sooner.  I'm thankful for each and every moment of life that I'm given because at any point my body could just give out.   I hate the thought of just leaving all of my loved ones; especially my soul mate.   I just can't bear it!  I love him so much and just thinking about what's going on with me makes me cry a river of tears.    We have had so many great years together and then these types of moments where I feel like such a helpless shit as he waits on me hand and foot with everything I could possibly need.  I wish I could do so more for him because he really deserves it.   He is more of a man than any man I have ever met and will always be my own personal hero and of course the very  best friend I could ever ask for!)  How can our  love end this way I wonder?  How come we can't have more fun in the snow?  I'm so weak and seeing all this snow makes me sad and reminiscent of all the fun pure powder day my sweetie and I have enjoyed together.   I'm so thankful for all the great memories I have and how I wish we could make some more.  I did see the news and noticed that we lost a young snowboarding princess this weekend and I only wish that I could go that way!  I have always thought that I would rather Die having fun than to  die a sick death.  When you die sick it doesn't seem that your life is noticed at all at least in the media.  Just a small blurb in the Obituaries section and that is it.  It doesn't stop there, I'm loved by so many here;  I know I won't be forgotten here!  There is so much love here and I very grateful for all this love!)  Let's hope 2011 will be the year that the cure for all cancers was found; an end to Corporate greed over human lives. 

What sucks sometimes is that I still wonder why I was chosen to suffer so much how come such a great couple like us was not allowed the happiness of being able to have a family together but instead of kids, we got cancer?   I wouldn't want to wish this on anyone although I still think of the evils of our last Administration and their greed.  Why doesn't cancer affect those who are totally evil?  Why is it often coined "the nice person's disease?".   If I could just give this disease to anyone, I would definitely pick Dick Cheney.   Sure he has suffered some with heart disease, but the damage he did to our country and so many millions of lives; he deserves so much more.  Pure and total evil is how I would describe him.  OK enough with the politics.  What an evil, evil subject and of course the most evil man ever!

How am I going to beat this?  Oh it just might not happen but I can't help but choose to live each day I'm given and to try my best to do as much as I possibly can each day.  I've been sitting in front of the television way too much but I'm so weak; I've tried to read some books but my eyesight is not improving; it's getting kinda blurry?  My head starts to hurt and then I start feeling dizzy and then I fall asleep for more hours?!  I just read this little brochure put out by Hospice on the process of dying.  "Gone from my Sight".   The one to two weeks prior to death; I'm supposed to become disoriented which I have not felt much of yet so I hope I have more time.  I get these pains in my chest and then my heart just races and then it scares the living crap out of me; Oh god how I wish I would crap my pants from that; I really do need too!).  But anyway, I have been sleeping a lot more and when others sleep their bodies are energized, mine will be preparing my weak little body for my next journey (Death).  Its kind of fascinating how the body does all that it needs to do for all of life's processes.  I had no idea but its happening.  My body is just like a skeleton with skin now; no muscles anymore.  I can't do any weight gaining shakes without vomiting everything out.  Nothing seems to be working but I'm still grateful as ever to have so many loving souls around me.  

I'm definitely not feeling like eating much but I do feel incredibly dehydrated and drinking the living shit out of these Key Lime sodas that I've been craving.  Yep, still craving pickles; although lately that's about all I'm craving for right now?  Sometimes mashed potatoes; went through some killer cravings for cheese and whole milk!?  I'm still doing TPN and we almost didn't last night because it just seemed that I was that close to death from the severe pains and not being able to catch up on the pain.  It was horrible last night and I feel so bad stressing my poor honey out like that!  He does not deserve that at all!)  He's so wonderful and I just can't say enough about him!)  He really is the most amazing man ever!  Each day I spend with him makes me feel so much more and more in love with him than ever!  I never thought I would ever find true love like this and to know that my days with him may be numbered makes me feel very sad.  I hope he is able to move on and become happy once again.  He deserves happiness and I know he's not happy having to deal with my impending death.  It sucks so bad.

I wish all of you a wonderful 2011 and I hope and wish that I can be around to witness such a great year.  All moments are precious; Peace and Love to all of you!)

UPDATE: I'm still fighting horrible pain in my bottom!(  I'm deeply touched by all of your responses and of course all the love that exists on my blog!  Thank you all from the very bottom of my heart.  I'm happy and grateful for all the love and support you all have given me.  I definitely do not feel like a worthless shit anymore!

My honey and I have been shocked at the recent developments of my body lately.  Check out the vein-age and bony arms?  It's pretty scary and shocking but it's what's happening each and every day I survive this beast called Cancer. 

How is hospice helping me so far?

Ovarian cancer is such a dreadful disease that sadly I'm still fighting, kicking, and screaming to fight and oh how I wish so much that  I could beat it!  That would totally rock!   It sure does change one's perspective on life and to realize what's really most important in my life right now.  You sure as hell don't sweat the small things anymore and you really do have to laugh a whole lot more.   I know; how does one laugh when one is going through such a tragic time of life? Oh believe me I can find many reasons to!  It's not really all that tragic;  I of course have my sweetie pie honey by my side no matter what; and he is there with me being the best husband and caregiver he can be.   As another caregiver has said; he is in for the long haul and all to familiar with the TPN rituals!

My ultimate goal in this battle for my life right now is to get as many good quality days  in as possible with my sweetie. I'm so happy that he is able to work from home as this so called "deterioration phase" begins. Physically I'm still doing OK in that I can still walk around; getting a few things done around my home like laundry, cleaning, and of course cooking a great meal (every once in a while) for my sweetie.   I also get to take my pets outside sometimes for walks; Tonto loves to go on walks and often cries by the door for me to take him outside!  He doesn't understand that he can't go out all the time because sometimes the neighbors are out walking their dogs who in turn are not too crazy about seeing a tailless cat on a leash.  The feral cats are not too crazy about him either. and he's not at all crazy about them; but they both make me smile and laugh at least many times each day!  Pets are so important.

Today on my little walk with Blue Belle, she has been chasing squirrels like crazy.  She kind of herded this little squirrel and cornered it and I couldn't really do much as this was happening and then all of a sudden the little shit ran up my leg a little ways and I squealed bloody murder and then it jumped off me and then Blue Belle started chasing it again and it started to run at me again and I squealed again as it turned and jumped up a tree; thank GOD!  I can actually laugh my ass off about it now but it was pretty scary.  They kind of remind me of rats and its terrifying to think of getting bit by one or even scratched.  I'm so glad I had on my long pants and not a dress!

OK back to me.   I'm still happy as can be if I can just get any of the above done or just being able to get outside and enjoying some beautiful sunshine! All the great things I know I will miss when this great journey is over.

My dad has been here for the last couple of days and will be leaving tomorrow but he will be returning soon in couple of weeks.  It's so great to have family visiting and  to be helping out around the home.   It is amazing!  Oh and we will be watching the World Series tonight!  I'm super duper happy that our Giants are finally  in the World Series; hell they haven't won one since they were in New York.  OK enough about the sports!

I have also been fortunate enough to have  had quite a few visitors from my job which has been more than wonderful.  God I sure miss them; I have to hold back tears when they leave because I miss them so terribly; coming into work and being around such great people.   Oh how I have been blessed to know each and every one of them! Oh how I love good people!)

So now; how is hospice care helping me so far? Well so far I do have a great nurse, although I still miss my old nurse and wished so much I could have kept her. I had such a horrible time  adjusting last weekend and part of this week trying to control back and obvious abdominal pains (those include hunger pains and surgical pains= I'm not even sure I'm sewn up right inside there?). We finally got the pain under control for once but the hard part about it all is keeping it under control.   I can loose control of that pain so easily; so that's where having my honey around helps me greatly.  

What we are trying out right now in addition to my pain pump is Methadone (2ml per day= 1ml morning, 1 ml at night), then I have this wonderful cream that I can rub into my skin that has a combination of Benadryl, Ativan, and something else? for the nausea but it hasn't helped much for the insomnia so tonight I get to take a regular Ativan (crush it up and  mix with 1ml water) to take under my tongue.  (can't take pills very well).  I also will be cutting down to 10 hours on the TPN to see if the nausea will let down some; that's also another sign that my body isn't taking to well to food. 

My new nurse calls me daily to find out how I am doing and I'm very thankful for that.  It seems each day is a new thing to conquer whether it be pain, nausea, or insomnia.  What is very helpful is that they are trying to get this down to a science in "End Stage Ovarian Cancer", she gets to talk about my case (my problems) with lots of other hospice nurses who in turn offer up genius solutions to help me combat my daily problems.  If she doesn't have the solution; she will get it and I'm very grateful for that.

GO GIANTS!

Peace and Love to all of you!