Go Sharks & some good Kharma....

Well I had my meeting with my doctor as planned and talked over my options and paperwork from the Clearity Foundation. He looked up one of the websites and was a little irritated at one of the founders who apparently is making a fortune on these genetic tests; but if they really work to help more women survive this deadly disease longer; then he must be doing something right. I don't care; I just wish to live. Perhaps him making so much obscene money is further proof that health care costs need to be re-evaluated then so be it.

I haven't been fortunate enough to have my own genetic testing or to have my tumors evaluated like this; I want something that really works. I don't want to keep on taking these same drugs that are also killing me as well as the Cancer; I want to try other drugs that are out there that might just work on my cancer and put me into remission. I don't feel the same as my doctors; that I am a lost cause. I have plenty of life left in me and I want to inspire the world if I can to live each day with meaning. Don't stress on the small things or even big things that you have no control over; try to look around them and see the good in all situations. I know I have.

While we were in the doctor's office; my pain started up and my intestines were stirring and I just started crying and doubled up in pain. It was horrible; I had forgotten to take my pain medication for the day; of all days to forget while going to the doctor's office. As I was sitting there, we had been going through the paperwork that I had wanted to have filled out. I started cramping up and doubling up in pain so he immediately had the nurse take me over to the infusion center where we sat next to a very young man who was very much into music; he must have been in his early 20's with the same picc line as myself. Well, to begin with Christine had led over to a chair to sit while I waited for my pain medication.

The young man was getting his chemotherapy and we all were talking about Neil Young and the Bridge School Benefit where Metallica had played very awesome acoustic just last year and that this year's Bridge School would be equally awesome with more great talents. We were just sitting there with Christine who works in the infusion center and is a huge fan of Paul McCartney. We had to tell her about going to see Bob Dylan. We were supposed to see the Sharks play and my husband kept telling me that we are not going if you are in this amount of pain. I kept telling him; "I'm not missing out on the Sharks!". I don't care; I don't want us to miss out on an evening out together. I was very much looking forward to going to see the Sharks play.

I had a good friend give my husband and I tickets to go see our beloved Sharks. They didn't win in the shoot out and it was 0-0 game the whole way. How weird it was that not one point was scored during the whole entire game?; each goalie had a shutout and even those 5 minutes of overtime; no goal was ever scored. At least the shootout Sharks only scored 1 point and the Coyotes (Phoenix) scored 2 points. It was a bummer they lost but we still had a killer evening together!)

We didn't see any scores but we did get to sit in the second row for part of the 1st period. It was so amazing being able to sit that close. Neither of us have ever sat that close at a hockey game! Some of the players slammed up against the glass and I squealed once while everyone on the row laughed at me and I laughed too with them of course. They all knew we were 1st timers just checking out the view for a little while. I got so carried away with my camera that I ended up taking 576 photos in one evening of fun! I couldn't help myself; this 2009 will hopefully be the best ever; hopefully not the last!

Right after we had traded the tickets back; while we were sitting in our assigned seats; the game had stopped for just a few minutes and a give away was announced. We didn't really give it much thought because we hardly ever win anything when we go these events. My husband heard our section and then our row announced and we both figured that only one person from that row would win something; but no; it was everyone on our row who won a free T-shirt and double CD of the Beatles Classic hits. It started on each side passing CDs and T-shirts in two different directions until everyone had something on our row. We played the CD in the car and it sounded amazing on the way back from the game! We were so happy to have won something! I'm know that I'm giving my CD and T-shirt to the person who gave us the tickets! The T-shirt and CDs both have the date 9/9/09 on them? Still a great prize, my honey's T-shirt fits him perfectly but I ended up with XL which will swallow me whole anyway!)

As I was snapping away at all the excitement of the game, my husband looked over and spotted Neil Young just watching the game with his son. Now we just saw Bob Dylan on Saturday night and then to see this touching moment with him with his son; now they are holding hands and watching the game together. I kept snapping shots of him for my home movie and it was just amazing and beautiful to see him with his son at the game having a good time. It was ironic that we had been talking earlier about going to see the Bridge School Benefit Concert which helps raise money for physically challenged children such as his own. What a great dad! I could just see the love between the two of them as they watched the game peacefully.

After the game we stopped briefly for a beer (I only drank half of my Guiness). What a fun, fun evening to have spent with my honey. Even though the Sharks didn't win, we still had a blast. It was kind of a magical evening. While in the bar, they were having Karoke and the nerve never struck me to get up. We stayed for about 1/2 an hour and then left when my kidney started hurting. I now know that I do have to start more antibiotics tomorrow in case I am getting an infection. This will prevent me from going into the hospital once again for another infection. I'm also doubling up on the cranberry juice! Well one bummer is that I did loose some weight being off the TPN and am down to 119.5 which isn't so bad. The cool thing is that the dietitian did tell me that it would be normal for me to loose a few lbs after getting off the TPN. I won't sweat it but I will try to keep munching as much as possible!)

I'm still trying to eat as much as possible but it does require smoking part of joint each day and sometimes up to a whole one. At least it works and I'm keeping my appetite while laughing at myself through out the day as I do and say such spacey things!) At least my sense of humor never suffers!) I'm also able to get things done around the house like laundry, dishes, cleaning, sweeping and mopping the new floor, and my honey is reserved to vacuuming. He thinks that's too heavy work for me. Sometimes if I have the extreme diarrhea, I will take the Zofran (nausea medication) usually constipates me and doesn't ever give me the munchies like pot can. Because of the stomach surgery, I'm most often nauseated and haven't been able to get an appetite on my own. Maybe my purpose in life is to prove this plant really does work to save lives? It is saving mine; especially right now! It might even be prolonging my life right now. I know I need those munchies now more than ever!) Here's to more hard headness and continuing this fight to stay alive! I'm not giving up and will continue to have fun with my husband!) Peace and Love to all!

Anxiety Normal Prior to Gastric Bypass Surgery?

I guess anxiety is pretty much to be expected with this surgery number 6; my very first Gastric Bypass surgery. I don't fully understand the full concept of what the whole surgery is about but I do understand that some of my intestine will be used to make a new opening in my stomach so that food can finally get through my system and that it is going to be yet another invasive surgery with lots of risks. Instead of the lower portion of my tummy being cut open; I will be getting the upper portion so here is my latest scar to be updated tomorrow with lots of staples.

Oh GOD I'm scared; but I do have faith that I will get through it. I do know that I have lots of beautiful souls praying for me tomorrow and tonight as well. From what I understand, I am in numerous prayer chains and that really touches my heart deeply. I'm so happy that I have touched so many with my fighting spirit. That to me means that I am living my life very meaningfully. If there is anything I do wish to teach others about my life is that life really is worth fighting for.

During this particular surgery, I am hoping that any tumors present will be removed; I also wish some boobs could be inserted into my pathetic flabs of skin that just happen to have nipples. (I had to cover up my flabs of skin with my gown in Photoshop in that photo below) But that's just wishful thinking on my part.

I've been opened up so many times that I'm like "why the hell not?". Why not get some boobs for my honey to enjoy. Somehow he still enjoys those miserable flabs of skin? What can I say, he loves me and of course I love him more life itself. Can you believe that I can actually see bones through my boobs? Now that's skinny and it's pretty sick too!

It sure would be nice to have these scary ass looking tumors removed also but I don't see how it can be done; these are going to have to be saved for chemo and /or radiation. Now that I look at all the photos I tried to take of them; they just don't show up looking all that big or existent. I promise you they do look scary in person. I will be talking with a radiation specialist soon about my upcoming treatments.

In this photo here below, that knot is one of the tumors and I know it might be a little hard to see. This is one thing that my doctor/oncologist will looking for is tumors that are located in an area in my stomach which might easily be approached with radiation treatment. He feels that the reason that my intestine is blocked is because of tumors. Now this is a chance that the tumors will be located in an area where it would be too dangerous to use radiation; so that's where the heavy duty chemo comes to play. I don't even know if I will be able to continue on the Tamoxifen treatments; but I do know that he would like me to start some heavy duty shit that will most likely make me go bald again.

That's OK with me; I'm designing a tattoo that should cover up my entire head; mostly of butterflies and flowers; just some beautiful art for the world to enjoy instead of those nappy, itchy, hot ass wigs. I will proudly walk around with my bald badge of courage. I have seen several women get tattoos after they lost their hair and I feel it's brilliant. I want to do just that! I haven't exactly picked out an artist just yet; nor do I have the money to do it; I know it all comes with time. We will see. Right now it's just a dream that I hope to be able to make come true. We all have to have those to keep up going.

Here is another update on my kidney infection. I have been on Cipro before and it caused me some major, major pain and suffering in my intestines. It didn't even work for my kidney infection at all and this was back in April. Now after my surgery; I started getting some serious pains and the pain would get up to a 10 to the point that I was doubled up and crying; tears were just streaming down my face and I could barely breathe from the extreme pain. I had about 3 bouts like this.

Well, on Friday night; I had to have pain medication literally every 2 hours and I felt it was strange that I was still suffering; maybe it's the fermented food that's still in my system but on Saturday afternoon; I had a nurse come in to change my antibiotic medication after it had gone it's course. I asked what kind of antibiotic I was on and was shocked to hear that I was on Cipro. OMG! I thought! Wow! This could be why I am suffering in so much pain.

I immediately told a doctor about my prior experience with this drug on Saturday afternoon after taking the blasted medicine and that it just wasn't at all helping with my kidney infection now or before when I took it many months ago. Days later I'm still having pain when I pee and the peehole factor of pain is pretty severe. My pee was practically bloody, cloudy; everything you come to expect from a kidney or severe bladder infection and to still be on this antibiotic like 2 days later.

You would expect that it would start working much sooner; or at least I expected that. The doctor agree to change the antibiotic; I'm still suffering in pain, but not nearly as much as I was since I have been changed off the antibiotic; my peehole doesn't hurt nearly as bad. So yes, we fixed something!

My honey visited with me twice yesterday with Miss Blue Belle in tow. She was so happy to see me both times. She jumped up onto the bed and gave me tons of little sweet Blue Belle kisses each time. It was so sweet to see her sweet expression with her ears being back as if to smile at me.

I don't mean to go off subject here, but I felt it is relevant to my feelings. Last night I had a great time just relaxing in the bed with all three of us (Jimmy and Blue Belle) together as we watched "America's Most Wanted". I don't have any idea why I even watch the show; I guess it is exciting but the horrors of what these criminals do does get to me.

I will never even begin to understand why some people do the evil things that they do like taking a life when I'm fighting so hard for mine as strong as I am particularly right now. It's just amazing to me how fast it can end for someone and for another person to have that much power over someone else's just to take it and not feel anything in doing so; maybe just for a small amount of cash or drugs, or because they hurt that person's feelings or what ever it takes just to end a life really amazes me. I feel life is completely priceless.

I am always glad to see when justice is served but I don't like to be reminded of how cruel the world can be. I will never understand why there are so many movies and shows about how horrible human kind can be towards one another. It seems commercial television seems to prefer to show us the worst instead of how kind others can be and this is one thing that my blog has completely taught me that television can never show me is how many beautiful people there are in this world that just read my blog, leave comments, email me, or just let me know that they are thinking of me or how my blog has helped change their lives.

Well after we watched the show we all took about an hour and half nap together just snuggling and loving on one another. It was wonderful to be so close to my husband and to feel how safe he always seems to make me feel. These are the lasting moments I often cherish as I sleep alone at night here in the hospital and what I will be thinking of when I go under tomorrow.

OK, I'm still very, very nervous about tomorrow and can't help but be. I have so much anxiety to overcome and fear. I pray that this surgery will be a success. Please GOD, no more hiccups for me! I don't need any more road blocks, speed bumps, pot holes, or trouble. Just success if at all possible! Please!)

Well tomorrow that light skin will have some staples on it and some bandages. I hope I heal fast and can ride my bike soon and swim! So much I wish to do but I also need to focus on what I do have to be thankful for and that it quite a bit.

I want to thank all of you who are praying for me sending me good vibes, possitive thoughts and so much more! It means the world to me and I want to thank you all from the very bottom of my heart!) Thank you! Thank you! Thank you! Lots of love to all of you! May there be Peace on Earth!)

Another Pick Line...

Well today I saw the doctors and my dressing was cleaned; it wasn't so bad just a little yellowish infection running out of the wound. No fevers and my vitals have been normal. This is encouraging but I can't wait to eat; I am so dam hungry. Thought about eating my fingernails! Just kidding!) That's pretty nasty!

I would need to get a picc line inserted for feeding, (I had one inserted last time I was in the hospital only I was much more drugged up & don't remember it as much) taking blood cultures, and receiving my fluids. I got it inserted and that was a hard thing to do.

I had to get morphine, Percoset, and an Ativan because I am such a chicken monkey when it comes to pain from sharp needles poking major arteries. We got some photos of me getting the pick line but guess what? They are on my D80 Camera and I can't download them here until later; so yes this posting will be updated when I eventually get out of the hospital.

This photo will have to do of my final pick line in my left arm. Yes we tried my right arm and dam was that so very painful because the vein itself is still not healed from last time. It was impossible to insert. It's cool to watch because an ultra sound machine is used to first find that major artery in the arm which then leads to the heart. All of my nutrition will be absorbed through the blood stream therefore giving my bowels a much needed break so that my fistula and sore can heal once and for all and I can finally go home and eat to my heart's content!)

The whole ordeal is somewhat surgical in that I am covered with this blue cloth sheet and everything is sterilized. My arm has to sit sideways for an extended amount of time as this catheter is inserted and/or threaded into the large vein which leads to my heart. I can sort of feel it as it is inserted. On the right side it felt rough and rusty as it was being inserted and it hurt so bad. I was crying and trying my best to sit still and take it, but it wasn't working so we had to use my beloved left arm.

It takes about an hour just to set up for the whole process; bringing equipment and getting everything ready. My honey was there by my side holding my hand and calming me. I had my ear buds in and listening to my mellow rock and roll music which really helped; also being drugged up helped tons too. After the picc line is inserted and set up, then an x-ray is performed to make sure the picc line is placed in the correct position near the heart. Mine wasn't so it had to be readjusted. That was painful but I got through it. Now I can get my milk food tonight at 9pm. I hope it fills me up or satifies my hunger because it's pretty heavy duty right now. I'm even getting thirsty but I would rather be healed than to go through more hell!)

I was also told that the fluids would be decreased soon since I have been peeing more than most racehorses. (about 600cc every 2 hours from my left and 400cc out of the bag). That will be cool and I also got to get up and go on a walk. I really do feel strong and that I could easily go home from the hospital in just a couple more days but I still have to stay to be observed. It's understandable. While I was walking I heard my honey walking behind me with this beautiful fluffy dog. She had just had a bath and she felt so pretty. Miss Blue Belle was wagging her tail and smiling with her ears back to see me. We all walked back to my room for some love.

It was so awesome to have Miss Pretty Blue Belle visiting me and loving me. What awesome therapy than to have a pretty Blue Merle Shetland Sheepdog loving on me in the hospital. How could I not smile? We sat and watched some TV and then my honey had to go home; it was about 10pm last night and I was starting to nod off.

Check out these beautiful flowers that my dad sent me! My first flowers in the hospital (this visit). I have lots of people praying for me and lots of positive thoughts for my healing; maybe that's why I haven't had a temperature just yet which is absolutely awesome! That means the infection is healing. Thank you all from the bottom of my heart!

More Days for Observation...

My vitals have remained solid and very good this entire time I have been in the hospital; this includes my heart rate, oxygen level, pulse, and most importantly, my temperature; which has remained normal. They have not changed at all since I have been here (since Wednesday evening).

When the OBGYN doctors returned the very next morning which was yesterday (Thursday); it was revealed from my CAT scan that my right kidney is blocked from the infection. Now this could be from a number of causes. For now, I would need to get a tube inserted surgically and then a bag attached in order to collect the contents or my right kidney. In other words, I would need to get a pee bag. If I delayed or nothing was done; my right kidney could become permanently damaged.

We did arrive on time and everything seemed to be caught early so we really needed to act quick in order to save my right kidney. I was told this bag would need to remain in place for at least a few months. I was pretty bummed to say the least but I do need my right kidney so I'm over it for now and ready to begin this whole healing process for however long it should take. So what is this exactly? What's the terminology for this pee bag? It's called "Percutaneous Nephrostomy".

The whole surgical process for getting the nephrostomy was pretty trippy. I wasn't wheeled into surgery until a little after 4pm. I was first wheeled into the surgery waiting area with my honey by my side waiting until it was time for me to go in for my process. My honey gave me a long kiss before I was wheeled in to the surgery room as we each told each other how much we loved each other.

When I got into the room, my gurney was pushed directly next to the operating table; a whole team greeted me as they each did their own thing. I was instructed to move over to the operating table as several team members helped me over. It was a comfy operating table; I had a pillow to place my tummy directly onto and a nice toasty blanket was put on my back as I lied down on my stomach. One technician operated on my back and I could feel the cold oozy gel that was placed on me then the wand from the ultra sound machine which guided the technician who was to insert the tubes into my right kidney.

I was given medication to first numb me and then to sedate me but I was still awake enough to watch the screen and to hear everyone in the room and even communicate to them. After the drugs I could barely feel little needles in my back to numb the area in which to insert the tubes into my kidney. It didn't take very long at all. It seemed only about 10 minutes in all.

All of a sudden I asked "are you done?" and they all replied "yes, all done". I was then moved back to my gurney and then wheeled back to my room where my honey was patiently waiting. He walked over to help me back into my bed and then he kissed my forehead as we both told each other how much we loved each other. This happens all the time. We must tell each other how much we love each other at least a hundred times a day. It's just the way that it is. He is there for me and I am there for him even though lately it has seemed a little lopsided.

Now this bag here fills up surprisingly quickly and I have also been peeing up a storm. I'm not sure how I am going to handle so many months with this contraption but I know in my heart I can manage to. I wonder how riding on the motorcycle or even swimming will be with this contraption or if its even possibly? Will I be able to or do I need to skip this hot summer and not swim? I sure hope not; I pray this thing doesn't have to stay in as long as they are suggesting.

I did find that I was incredibly constipated yesterday and requested to have a suppository. The pharmacy was so incredibly slow that it took 7 hours to get my suppository. The nurse finally complained to the slow pharmacist that there are many out there who need a job and that he needs to put some fire into his ass. I laughed; what a an awesome crazy nurse! My kind of lady!)

I have been blessed with some very sweet nurses except for that huge brute downstairs in Emergency. He was the best at finding a vein? What the hell!? Give me a break! I have seen so many others who proved miracles on my viens. I mean miracles!) Anyway enough about the bad Kharma.

I finally got my suppository and shit out lots of tiny little pebbles (hard shit) and boy did it hurt. It was such a grueling process of trying to update my blog and keep running back and forth to the bathroom to squeeze and squeeze and only get a miserable little pebble and then have my ass burn like crazy. I finally had to give up and work on it this morning. I took many breaks and finally here it is!

Well back to last night, I finally had enough pain and started noticing that my tummy was leaking some so I just grabbed a big stack of paper towels and my puke bucket by my side. I had a shot of morphine for the incredible pain of rocks slowing squeezing out of my ass (the kind with sharp edges or at least it felt that way). I also had an extra padding of diaper stuff (the padding they normally put on hospital beds to keep you from peeing or pooing on your bed) and just lied there and let nature take it course. I finally got all the pebbles out one by one in my bed. My back hurting far to bad to try to utilize the bed pan, so the paper towels worked like a gem. After I was done, I emptied my bucket into the trash in the bathroom (so I wouldn't have to smell a thing).

My honey came by later on and spent the night with me. He was bummed because of the Sharks very poor performance on their game 1 of the Stanley Cup playoffs. A whole shut out by a rookie. He had me to cheer him up even though my situation is not too much of a cheer but we are just grateful that I am alive.

It was a long night of having to get more pain medication, benadryl, getting my nephrostomy bag emptied, peeing, or getting more water.

UPDATE: I have been getting treated by that one doctor that had been so negative. I kind of feel he was negative at that time because he was tired and of course I nearly looked dead to him because I was in dire need of a blood transfusion (discoloration in my skin). I was in very bad shape and I picked up on that which is more than likely what made me freak out.

He is currently being very wonderful with us. These two days have been encouraging and he has given me hope that I will healing up just fine. I always give people more chances to prove themselves. I understand completely that we all have our days. I just ask of others to just be pleasant with me and don't cause me any stress. That's not too much to ask for at all. Peace and Love.

He has been encouraged by my healing. He told me today that the nephrostomy may just be in me for about a month or less than a month. I will be able to swim this summer. I will need to get a stint in order to keep the opening which more than likely is blocked due to scar tissue build up from all of my surgeries. This would be simple and I'm not sure how long the stint will have to be in but I would need to see a urologist for all of that. I may get to go home tomorrow but we will see.

If you notice in this photo, you will see 2 black lines. These are sutures from my incision to the abdominal wall with the layer of skin on top. Pretty facinating. Now the pen marks are marks where my skin was red from the infection. Now you see no infection what so ever just the gruesome photo of a hole which will heal up just fine!)


UPDATE: At around 5:30pm today; my husband and I were watching "the Dog Whisperer" together and I was actually craving a Fish Sandwich with extra tarter sauce, cravings for my favorite pasta salad; oh and so much more. I was actually fantasizing about all kinds of fattening foods I could eat once I get out of this joint. I felt so incredibly hungry and still am.

Well that soon changed when one of the OBGYN doctors came by to check on my dressing. We were all so confident that I could get to go home tomorrow and that it was all over. As I pulled my gown up; our mouths all dropped as we saw the dressing was wet with yellow. "Oh No! It can't be!" I thought. We pulled every thing back and the gauze that fit inside the wound was nearly black from fecal matter. A fistula had made it's way to my wound and this originated in my bowels. No food or water for me for at least a week or two; quite possibly longer. I will need to get a pick line inserted tomorrow to begin intravenous feeding so that I don't waste away to nothing.

How incredibly disappointing to know that I will need to spend another couple of weeks in the hospital again. I cried and cried in my honey's arms and the nurse brought me a painkiller and an Ativan to calm me down.

My honey calmed me and reassured me and together we both agreed that damn it! I'm one tough woman, I can still heal; I can get through this; I just know that I can! I have love, plenty of support from family and friends who also love me, more TV channels (National Geographic, Animal Planet) than before to get me by; although I really do miss Rachel Maddow like crazy; they do have 2 Fox Noise channels which really puzzles me and no MSNBC. It's not really news; it's mostly propaganda and besides Bill O'Reilly is Prozac for me; first he makes me crazy and second he kills my sex drive because he is so dam vile and nasty.

Anyway more updates to come!) Hope you enjoy even though I am stuck here in the hospital for what appears to be a long time. I will be healing; I promise!)