My Hero is my husband - The Best Caregiver I know...

This is my favorite photo of my hot husband!  You can see the love in his eyes for me.  It's absolutely beautiful and was taken by an amazing young woman just a few years ago.  

In this post I am going to talk about the man behind the woman who fights this horrible disease.  I wouldn't be where I am today if it were not for him and I certainly wouldn't be sitting here writing this post.   This amazing man is my caregiver and my husband.  He is my super hero with out a doubt!   He always continues to amaze me more and more with his courage and  determinations each and every day  as we walk these miles together; hand in hand.  We are talking about a man who chose to stay and fight this disease with me instead of run and complain like a lot of unfortunate boys I hear about when other women  are diagnosed similarly.   I feel all cancer patients deserve a good Jimmy by their side.   It's so sad for a woman or even a man to have to go through a diagnosis  alone and I have no idea how those who leave these souls can even live with themselves.  Would they wish the same is the roles were reversed?  How would they feel if their spouse /lover left them after such grim news?  How can they be so selfish?  I don't understand it nor will I ever.  I know my situation is bad in so many ways but I still feel so incredibly lucky each and every day to have the most wonderful husband /caregiver I could ever ask for.

I have actually read that some women have been left because their man at the time of diagnosis wanted children and cold heartedly left a woman after a cancer diagnosis because of this selfish needs.  Yeah, how would he feel having to go through all that alone and I'm sure he couldn't dare do it!  Not having kids is not the end of the world or even someone's life.  There is always adoption after 5 years of being with out the cancer.  I hope this post will make those who consider leaving think again.  Yes, it is a lifetime commitment and we do have many days which are hard on both of us.  I think all couples do even when it comes to raising children together.  What we have gone through together; I would never want to put a child through w; it's hard enough on our pets.

My wonderful man wanted to get married right away before I even started chemo.   Here we are signing our Marriage License at City Hall in Santa Clara County.  He knew we had no time to waste and because of his good job and my great job; the benefits of being married would help me greatly and it has!  I didn't get much of chance to grieve or be sad about the whole diagnosis (well I did cry and grieve but this amazing man was there for me to lift my spirits!) because I was busy planning my dream wedding.  We got married exactly 9 days after being released from the hospital; 1 day after getting my staples out and 2 days before my first chemo treatment.  We didn't have the usual wedding night that so many couples would dream about; we had to rise and shine early the next morning and be at the hospital lab at 9am for my pre-infusion blood draws.  There is so much about Cancer that most don't learn about until after they are diagnosed and it can be such a total nightmare and it was for both of us; but we got through it together with lots of love.  Love can get anyone through anything; it conquers!)

Well nearly 8 years later; we are still going strong and his pace has never dropped even once.  He has gone through so much training that he could make a very good nurse and does many things that nurses do even better.   He has mastered so many medical tasks such as  everything there is to know about caring for and flushing picc lines, giving Neupogen shots and other kinds of shots as well, change bandages, care for wounds, prepare meals, set up IVs and so much more!   What a hero, my man is!)  He is also my eyes and ears for all doctor appointments and he makes sure he is there for  each one of them, he asks great questions that I wouldn't even think to ask and even researches everything that we are faced with having to do.  When he found out what kind of chemos I was going to be on; he was up late into the morning hours researching them and finding out what kinds of side effects I would be experiencing and what we could do about those side effects.  I'm so incredibly proud of him and his wonderful abilities in taking care of all of medical needs at home; even better than most of the nurses and they too agree!)  They are just as amazed at miraculous abilities as I am!).

He has also spent countless hours in the ER with me and in the hospital sleeping in uncomfy chairs or cots and sometimes we have taken nice sweet naps on the bed together (at the hospital).  He would go home just to take care of the animals (taking Blue Belle out for a walk and so much more!).  He made those hospital stays all the more special as he would sometimes bring in Blue Belle or just himself.  He would make sure I had all the amenities I could ever ask for; he would bring me my special toilet paper and we would be on the phone as we sorted details about which facewash, shampoos, and moisturizers and face masks to bring.  At night he would always be sure to Skype me with both my kitty and my dog and of course he makes me laugh at so many silly things; yes, he brings me lots of laughter and just his ways about him just make my heart skip a beat because he is so incredibly romantic.  I couldn't ask for anything more of a man!)

Of course the dreadful night of my initial diagnosis (I hadn't woken up yet from the surgery); he went home and researched Ovarian Cancer and especially other survivors who had beaten the odds.   He spent many nights up researching this disease and the next mornings after his researching we would either be spending hours on the phone discussing all that he learned or in my hospital room.  There always something new and possitive that he would want to share with me so that I wouldn't cry.  He does hate seeing me cry and won't let some people even be around me if they make me cry too much!  AWWW! I don't think I could ever say enough about my amazing man and how much I love him so.

We both cried so much during first couple of months and he didn't dare tell me what that doctor had  told him (while I was in that first surgery) that I would be lucky to survive another 10 months to 2 years maximum; not until my 5th survival anniversary did he tell me this.  I made it past age 35 which was supposed to be impossible and now I am at age 40.  It doesn't even seem real.

How does this Caregiver do it all so well? How does he sets up his work space?  Because he used to be in the Army; he has the best organizational skills that I totally lack!?  He has brought so much to the plate and has given me everything I could have ever asked for in a husband and a caregiver.  He does inventory each week and makes lists of items that need to be ordered and seems to always be on top of his game (my care)!

His typical responsibilities for each day I am alive include all of the following:

He is the first person to give me my freedom from the TPN.  He hooks it up at night and then he unhooks me.  I know that's doesn't seem like much but I haven't even started on all the tasks just yet.  When I take the TPN downstairs and plug it in to charge for the next feeding; I always notice this nice little neat pile of syringes all ready for    the next morning.  After unhooking me from the TPN, he also needs to flush the picc line properly.   Then he goes to work; gives me a kiss and we have to tell each other how much we love each other before he goes to work.  I don't hear from him sometimes until he calls me around 3pm to remind me that I need to pull out the TPN bag so that it can sit at room temperature for 3-4 hours.  He will get home from work and immediately give me a kiss and then veg out on the couch for a few moments before taking Miss Blue Belle out.  Once he gets back from that; he begins the long process of getting the TPN ready to hook me up.  This is now my only way of getting nutrition.  The sad thing is that while it is feeding me; it   is also feeding the cancer and I have tumors that are growing in my bowel and causing blockages.  I try to use mind over matter that they are shrinking and then Meg Whitman on my back has been stabbing me pretty horridly.  My Volcano Vaporizer does do the job on Meg pretty good.  I am trying hard to stay clear of the dangerous drug medications that I am prescribed.

Cannabis just gives me the quality of life that I so need.  Having cancer sucks and I'm so thankful to have medicine that doesn't have to be so dangerous for my body.  My honey makes sure that I have my medicine and reading about caregivers who do just that gettting arrested is Unconstitutional.  Yes, I said it; caregivers do so much for those they care for and why the government or polititions who obviously have never suffered in such great pain could choose to end a life (putting someone in jail is the same as ending their life as they know it) should be a crime.  The only crime that these caregivers are doing is helping their love have a quality of life with out  the pain and horrible side effects.   That is why it is Unconstitution to keep this plant illegal from other patients who really need it.  I that is why so many die each year and the amount of pain they have to endure and only be able to use those dangerous constipating addictive drugs.  It really does provide me with a good quality of life even though I tend to laugh a lot while on it; but at least I'm not crying my eyes out and being depressed.   Life is too short for suffering in any kind pain.

Another thing my honey does is that he protects me from danger and will not stand by if someone does me wrong.  I can't open the door at night if he is not home and he will fight anyone that tries to hurt me.  He is very protective of me and the best caregiver I could ever ask for.  He even does healthy shopping at Whole Foods for me.  It's really precious because my lists often contains items that I may have researched on the internet and stuff that he might not know what it is but he can find it or call me and I can help him find what ever it is.  He's so cute when he does call me and very concerned about getting everything that I need!) Oh GOD he is so cute and loving; I just can't ask for anything more and am so very thankful I have him in my life.    What a team we make!  We are a Power Couple all the way and I do know we are not the only ones out there!

Another thing I love about him is that his bandages are the very best; he takes great pride in doing  the most excellent job in all that he does for me.  He takes great care in pulling off the tape and then cleaning the wound (making sure that I'm not hurting he does it extra, extra gentle!), and then the best bandage job every time.  I have never seen a nurse do a better job than he does with everything that he does for me!)  That's what a caregiver must do and he does all that and so much more!); My love also encourages me to get out for exercise in order to heal myself; "get off your lazy ass!"  I get lots of encouragement from him and I appreciate it more and more each day!)  I do my Yoga stretches and even ride my bike or clean my house and do laundry.  My pot is not dangerous to others and I only do so in the privacy of my own home.  Well enough about my excellent medicine and my love for my hero; my husband!  I love you honey with all my heart and soul and I appreciate EVERYTHING you do for me and I know everybody else does too!  You are a hero to all of us!)

Peace and Love to all of you!  If any of you can think of other things your caregiver does for you; please do leave a comment about it!) It's so romantic what they do for us!   It's ALL about True Love as we know it!)  Love Conquers All!)

Painful side effects after stint replacement surgery...

Well I did decide to take all of you on another one of many bike rides around my neighborhood; although I was in pain when I got on the bike; the bike ride I have to admit did make me feel much better although a nice soak in a hot tub would feel amazing if I could just do so!)

I noticed the next day when I awoke that my legs were so incredibly sore and I could barely get out of bed.  I struggled through out the day doing my usual chores like laundry, making meals for my honey, and house hold cleaning.  If I needed anything on the floor; it was a hard task of getting down on the floor where I comfortable and then trying to get up; I needed something to bear my weight on.  My honey had to help me off the couch.  I had decided to go on a bike ride thinking that might make my muscles feel a lot better but in reality it did nothing.  Well actually it did for my morale; it make me feel better just getting out.

I did feel good that I was able to get out and enjoy such a gorgeous day.  My honey and I had gone on a date in the morning hours (after noon) to a movie (Easy A).  I give it 3 stars and Rolling Stone had given it 2 and half stars; so that's about right.  Emma Stone is funny girl with a great sense of humor.  We hope to see another movie soon (Secretariat) with one of favorite actresses "Diane Lane".  What an amazing actress she is!

I'm still feeling the horrible muscle aches in my legs, arms, back, neck, even throat and tongue?  It's really weird and we may go into the ER this morning but we will see; it's still early yet and I'm still as hard headed as ever about going into the hospital for anything.  I hope that my Pain Pump wasn't touched in anyway  and it's scary to even imagine that morphine and something else? could be pumping out into my system to cause all this pain.

Hopefully things will get much better for me and everyone else suffering from cancer or other major diseases!)  Can't just wish for just me; there are so many others in this world in worse shape than myself.  Peace and Love to all of you!)

Here is the lucky horse of the day.  His name is Bess Nick and he was born in May 2007.  He has been gelded.  Here is more information on him: Nick is a big bold moving horse. He is the most amazing color, a red roan with lots of sabino markings. He is dirty in this photo (he likes to roll around), we can only imagine how he will sparkle with a good bath! He should do will as a riding or driving prospect. He grew up in Alberta, Canada running in a huge wooded pasture. We brought him to The Animali Farm because he was going to be sent to slaughter. He was in the wrong place at the wrong time, and such a beautiful horse. He is halterbroke only, but is going to be used in the Starter class at Monty Roberts School in September 2010 where he will get some good training.  If interested in this amazing horse; please contact Jennifer Johns or Cheryl Forbes at animali@aol.com.

UPDATE: As the day is going on; the pain is getting more and more and bearable and I am able to walk up and down the stairs with more ease; still having problems lying down and getting back up.  The pain is not as great as it was and hopefully night time does not present another problem.  I do plan to take my bike out today and hopefully that will help the pain in my legs; perhaps some good old Vitamin D Sunshine will help as well!  We will see...

A New Medical Device to help keep me alive...

Bet you are wondering what that strange looking overs ized device this thing could be?   Well just knowing that I had it brought out the worst in me (just today only and don't worry; I totally learned my lesson!).  While I did get myself in trouble today; yesterday was much better.  Today, I have been puking quite a bit from trying to eat stuff that I really can NOT eat (chicken nuggets and fries).  That saying "Life is short" should never ever give me the excuse to try to eat what I want.  I had cleaned the unit last night and did not attach the vacuum pump exactly right so I was  just sitting on my couch attached to this thing ( when it's on, it sounds a lot like an aquarium) watching repeat movies on HBO while puking my guts out (& being hooked up to the dam thing through the tube in my tummy).  It wasn't vacuuming my system at the time (just running and making plenty of background noise) and I was so sick that I could barely move.  Finally, I forced myself off the couch and then cleaned out the unit again (just to see what up and why the little puke canister wasn't filling up?; OK it was just one of the tubes that needed cleaning and it was then that I discovered that it wasn't hooked up correctly (that entire time; must have been about 2-3 hours?).  I fixed the problem but am still feeling a bit sick, weak, and in some amount of stomach pain.

OK, I do have to say that Saturday was such an awesome day for me; had some visitors and then I had this huge device delivered to me from my sweet doctor.  He knew exactly why I wanted to avoid coming to the hospital (lonesome, bad TV, uncomfy bed, and being waked up at all hours of the night, no pets, etc.) I'm receiving home health care at home so that I can avoid being in the hospital; well it's not so fun there.  I haven't been able to eat for nearly 2 weeks and have been draining my stomach like crazy. I have also been smoking pot for the severe nausea and of course the pain  associated with the blockage in my tummy and then of course the most horrible side effects of the pot is the hunger and the thirst.  It's either that or taking hard core drugs like the constipating side effects of Dilaudid and Zofran.  Since the nausea and the heartburn have been out of control  (off the charts) and I was  also very constipated already; treating my condition involved more or less a roto rooter type thing in order to get my intestines working again; plus they needed some rest?

The best thing of all happened on Saturday and that was that I had a huge blow out!)  It was so freaking awesome!)  For most; one of those is really no big deal and a bit embarrassing to even admit to; but for me; it was a joyous celebration for my life!)  I'm still freaking happy over that!) 

Well having the severe munchies (its nothing at all like wanting to murder anybody (pot does not cause death or make anyone wish to kill anyone) it's not dangerous at all; its just wanting to eat FOOD); my honey had made himself a Dejorno Pizza which smelled absolutely amazing to me with those munchy tendencies of mine.   That is why I am so on board with reclassifying it (in the 30's they had no freaking clue about this plant).  I always get going when it comes to the medicine that has been helping to keep alive so long!)  I still get into reading "The Emperor Wears No Clothes".   I love that book!)

The device was exactly what I had experienced in ER (stomach pump) where my tummy was most often pumped.  Before the G-tube; I had to use NG tubes in order to pump  my stomach and the G-tube definitely makes it much easier and more tolerable.  I have NEVER been up for anything shoved up my nose so you imagine that the NG tube to me has always been a total nightmare and very, painful depending on the size of the tube.  It really gets annoying by the 2nd day so you can imagine after over a week or so!(

Well to get back to the device; its basically a medical device that can pump my stomach and boy did I use it after I had 2 small pieces of pizza (just the cheese and sauce = no crust for me).  I ate that (it was the first thing enjoyable I have had in over 2 weeks!); then immediately I hooked myself up to this unit in order for it to pump my poor tummy of stuff that it wasn't at all used to.  It was so amazing  just to be able to eat those toppings!  I loved every minute of it and savored those little moments!  Then for the next hour and half; I hooked myself up to that unit and  let it drain me of all those bad things I had just consumed into my poor little body!

TONTO'S CHAIR HAS TO GO

I know it's bad news for him.  We have to make room for this huge device and my honey and I decided that the broken old worn out recliner has to go and this medical device will go in this corner.  Tonto will have to go back to using his cat tree once again and I know he won't be very happy about that. He will just have to learn to sleep somewhere else.  Hopefully he won't protest too loudly as he sometimes does when it comes to him loosing more weight.  Yes, he needs a tummy tuck and he feels that extra skin needs to be filled with more kitty treats.

TODAY'S SPECIAL HORSE

Well here is the pretty big horse that needs a good home or some extra feed what ever we can do to help her out.   Isn't she just stunning?  Her name is Kiowa and  she was born in May 2003.   I think she is named after the Kiowa Indian Tribe in Texas?  She isn't halterbroke just yet but just needs someone to just give her some extra loving care that she deserves.  She is a Draft Mare and her adoption fee is $800.  I would love to give her a big hug and smell her!  Horses smell so good and I bet her nose feels like velvet!)  Just contact Jennifer Johns or Cheryl Forbes at animali@aol.com.

 I still have hope in my heart that I'm young and that I can get myself stronger and that my insides will eventually heal!  I hope to be around a long time for my sweetie or that we are around a long time for each other.  I love how we take care of one another!)  It always gives me such pleasure to do the little things for him as he does for me.  He really makes my life so much more worth living and strengthens that will to survive even more than ever!  I did eventually get my lazy weak ass on my beautiful bike; didn't go the whole distance but did go around my complex a few times!)  I hope to take you all on another bike ride soon!)

Peace and Love to everyone and here's to all of you cancer survivors out there and everyone else having many, many good quality years ahead of you!)

Handling an Abdominal Blockage at Home....

                                                                                This photo (if you look closely) is a very small illustration of my G-Tube that is sticking in my tummy (little white tube under the bandage).   The G-Tube its self is about 2 feet long; so imagine if you will that you have 2 feet of rubber tube sticking out of your stomach and the most important thing is to roll it up and tape to my stomach.  If not; it is very painful for it to be accidentally pulled out and then having to go in and get it inserted again.  Bet you didn't think you would already feel how lucky you are if you don't have that or even if you took a dumpers today!)  I'm already jealous of you; not for your looks but because of the common miracles that occur inside our bodies!

Photo number 2 is what my G-tube looks like when it is closed and bandaged up.  I took a video of what it's like to have my G-tube drain.  It's now posted down below (I have to clean the nasty bag as much 5 times a day.)  My sincere apologies for the quality; hopefully I can get a better quality one in the coming days. 

  Photo 3 shows my healing radiation burn; it's still pealing and bubbling,  and also very itchy;  before it was horrible red; about the color of a lobster or crab.  You can even see the drastic drop from my stomach to my pelvic area.  It's actually a huge surgical dip; isn't that a trip? and I'm still alive and kicking despite all that crap!).  I think the surgeons had run out of skin after all these surgeries to open me up and fix my intestines and scraping me free of cancer; well the tumors had been inoperable so I decided later on to just fry the fuckers with some good old radiation.  I even have what looks like a 2nd belly button!.  Very weird; I've lost my bikini body for good and you know what; I would still sport a bikini no matter what.  I have the strangest body ever and my honey still loves me and finds me very sexy?  I'm just a walking medical experiment!)

I guess it has been nearly a week and half since I was last able to go number 2 (officially); it is an real abdominal blockage which we could go to the hospital for to deal with there or do exactly what we have been doing. I have been keeping in contact with my Oncologist and he has been advising that I keep my G-Tube open. We would also decrease input which is anything going into my system.  Good news is that my Feeding Bag got reduced so it's not as heavy as the 16 hour bag; (I'm on the 12 hour bag).  It seems I am also hooked up to some sort of bag for my typical body functions.  I am so glad I'm not shitting in a bag just yet; although I am open to it just to keep me alive longer.  I'm really desperate to take a dumpers!  

So many greedy people are wishing for more money when they already have it; a private jet, a million dollar Yacht and I only wish to go number 2; that's all I ask for and hopefully it's not too much to ask for?  Just a little poopers GOD? that's all I want!)  And many of us want more than what we already have and yet they can't be happy for just that.  I have learned my lesson long ago with this disease; while it is true that I wished that I had normal working intestines and insides; but I still have hope they will one day soon work.  I sure hope something (nice perfect poo!) happens today or tomorrow?.

I'm also tired of being so incredibly hungry, light headed, dizzy, weak and most of all bony.   I'm so sick and tired of seeing FOOD commercials, FOOD shows, and DIET commercials?  WTF?   I'm now down to 106.5 and I'm 5-7.   I wished that I didn't have to wear so much tape on my body; I wish I could swim in our beautiful complex pool!  I wish I also could get in the hot tub or just take a normal shower.  That would be so freaking awesome!  I'm so sick of having to take shallow baths and using baby wipes to get myself clean!)  See all those little things in life that so many of us take for granted while wanting more and more material things; for me they make such a difference  and really are miracles for some of us!)  I only wish I could do all that stuff but I don't let it get me down too much because I still have so much to be thankful for. (the love of my life!)

I had been having horrible heart burn right in the sternum area and it will burn and feel as if I am having a serious heart attack.  OMG it was miserable!  I would be sleeping on the couch  most of the time with some pillows placed to keep my head up but somehow that gastric juice would just come right up my esophagus and it would still would hit me and make me feel as if I were drowning and in such horrible pain.  It burned my chest and sometimes I had to just hit my chest to try and rid myself of it.   Oh it was so miserable; because it seemed to last and last and last.   It would wake me up in the middle of the night with this pain and I would just sit up and try my best to get rid of it.   Most of the time I would set up my vaporizer and do all that and this would help for maybe several hours but it would eventually come back.   Since I hate to puke; I always try to avoid puking at all costs if possible; but it wasn't at all possible.  It was absolutely painful and then add on top of that I had the very worst vomiting fest ever.  Sometimes while I was vomiting it would feel as if I were about to drown; it's burning acid from my stomach coming up and some would even come out of my nose so I couldn't even breath!  OMG did that suck?!

Here is a video (please excuse the poor quality) but it should show what I am talking about when I mean draining my stomach.  I have the Catheter bag and the tube that goes into my stomach.  Hope this answers many questions.

  I was like that kid in "Detroit Rock City" where he had filled up an entire empty pitcher of beer which his drunken puke prior to going on stage to shake his "wee wee" in order to get him some Kiss Concert Tickets.   I filled up my puke bucket several times over about 4-5 miserable nights in a row.  After doing so I would then have violent fits of dry heaves which felt as if they were tearing my insides apart.  As soon as that hell ended; it was over for the night sometimes.

My husband and I were on edge and I was so incredibly defiant about going into the hospital.  "I just don't want to go!"  I would tell him and he would tell me; "I know that, but do you really feel that you need to go?".   I didn't know for sure, but I did know that I didn't want to go there, at all!  Surely there must be a way we can do this at home (unclog me).  At this point; it could very well be the end of my life and I DO NOT wish to die in a hospital with limited TV programming, censorship of anything pot related, yet the nurses and my doctors are behind me 110% with my medicine.  It's the only thing I have been able to use to combat the horrible nausea but the side effects are not so good.  I get so incredibly hungry (not allowed to eat) and thirsty.  

In those days proceeding up to this horrible blockage; I wasn't even eating all that much; maybe a few tablespoons of mashed potatoes, Brown Cow Whole Milk Yogurt, Boost, Ensure, and icky baby food and this would be just per day.  Now I only would 1 thing at a time per day and at night that's when the misery would come about.   Can you imagine just eating a few tablespoons of food per day?  That's about less than a bird. 

 Now I did a search looking and looking for G-Tube like mine and never found anything. So finally the internet has a real drainage G-tube.   Do other cancer patients also have problems with their stomachs and have to get things drained out?  Well I know I do and it's very freaking disgusting and only my sweet loving husband would find something attractive about me; he tells me that I am beautiful everyday and hearing this makes all the difference in me having a good day no matter what.

I promise to give updates soon! For now we are staying out of the hospital; I finally got a good night's sleep last night (1st one in days), the drainage is slowing down drastically and I just start ed farting which I haven't done in weeks!  You better believe I am treasuring those as a sign that my intestines will start to work and that my life is not done here yet! 

And here is the lovely young mare who needs a home!  Her name is Nutmeg and she was born in May 2007 and is a Tennessee Walking Horse.  Not sure how much her adoption fee is but she is gorgeous!  I would love to just hug and pet a horse like this; can you imagine?

UPDATE: I was able to squeeze out a few little bee bee nuggets today or what appeared to be little rabbit shits; hey it's better than nothing and I counted out about 5 little silent but deadlies!)  I know my prayers were kinda sorta answered; (anything that can get out is a miracle; so I'm happy with just that?) here's to the levees breaking and getting rid of what ever else is backed up in there!)    I'm going to get through this!)
Peace and Love to all of you!)