I can eat! No more shots & no more TPN!

My honey made me even more proud today more than ever when he called to complain about the one nurse who had messed my picc line, taught him incorrectly on how to power the TPN (Total Parenteral Nutrition), and she had also incorrectly bandaged my kidney tube dressing.

The way that nurse Aziza had bandaged my nephostomy tubedressing; the tubes were tangled and taped down and it was pulling and pinching me like crazy these last couple of days since she had changed the dressing. He doesn't put up with anything that is wrong for me or that he feels causes me harm. He will fight tooth and nail for me and I'm just amazed by it. It makes me all teary eyed sometimes at all the wonderful things he does for me and it makes me want to do all that I can for him as well. We have each other's back without a doubt.

Well back to the kidney pain; I could barely sit back all the way in a chair, lie down on my back completely, and I even had problems getting up off the couch because it just pinched and burned with pain.

We had a good nurse come in today to change that dressing and I can once again move! Check me out on the couch getting that dressing changed!) She was very gentle in removing the dressing and then she was also very careful about the placement of the tubes that came out of my back. She would adjust them and ask me to try to move around a little bit. We finally found the happy medium.

The TPN bag providers had also called to find out when they could deliver another week's worth of food bags. I wasn't too happy about this and we were confused about how long I actually needed to be on the bags.

Well that all changed when we called my doctor and left a message with him. He called me about an hour ago and told my honey that I wouldn't have to use the TPN tonight or get the shot! I felt like I had won the lottery. Here is a photo of me enjoying my first meal of the day! "Brown Cow Whole Milk Yogurt with the cream on top" it's fattening for most, but when you are 5-6 and half and weigh in at 110 then it's amazing!

I have to be careful (my honey spoke with a dietition just after he spoke with my doctor). I can't have anything high fiber; so just white bread (ick), white rice (sushi - but not for another couple of days), oatmeal, cream of chicken soup (yum), and only eat one thing at a time giving my tummy enough time to digest it. I just had the yogurt so I have to wait about 2 more hours until I can eat some soup.

I also have to make sure that I drink plenty of water (hello where is my joint?), yes, the cannabis will ensure that I get all those nasty tastes out of my mouth so that I can drink more water. Of course if I get to feeling sick then it will also help with that. I really love going the natural route with my illness; I'm not crazy at all about taking more Percocets which I did not know was actually Oxycodone that incredibly addictive drug that Rush Limbaugh was on. I still think the dude is crazy and his rants insane. I guess I don't like people who have to yell and remind us that everything is so terrible in life. It really isn't that bad and lighten up! I prefer those who are gentle, loving, those who inspire, who give us hope, and are nice to others; not completely and totally irritating.

When I first got out of the hospital, I needed those pills for pain (and I was having some bad pains), I was prescribed to take them every 4 hours, but I was only taking them every 6-7 hours, sometimes just twice or 3 times a day; if the pain was bad enough. After a few more days, it was once a day and today, I don't feel that need any more. I will just use what a good friend gave me months ago (cannabis). I'm so happy I get to eat!)

Most people really do take these little things in life for granted and for me they are just the miracles of life! We always tend to want more in life but I have what I need. I'm alive and I have found the love of my life!) We can get through more of these little interruptions as we continue to be strong together and to love our life together!) I feel complete with him no matter what the circumstances.

More Good News! My dad and my brother are both coming out to visit. Perhaps I can get both of them together on my birthday in June; we will see. My dad is planning to visit in the next week or so and my brother (my honey had me purchase his ticket = that was one of my birthday presents from him) is visiting me June 11th-16th. Although his flight on Thursday, arrives close to midnight, I could take him to the city for breakfast at Sparky's diner. I took him here in 1997 when he first came to California for the very first time. Evidently it was some night where all the drag queens in the city had been out clubbing. It was hillarious to see the look on my brother's face and then punk rock being blared on the speakers. What a stark reminder "welcome to San Francisco!". Once again it has been nearly 4 years since I saw him last (October 2005). That's too long for 2 close siblings to see each other. Although we do talk on the phone quite a bit; I sure miss him and am so excited for when he comes to visit! Here's to my health continuing to improve and that we don't hit any more snags along the way!)

Still Can't believe I am at home!

It's been so incredibly wonderful to start my healing journey at home. I have slept soundly in my own bed for 2 nights in a row. It has also been hard for my honey to not hug all over me as we slept next to each other because I have to be super duper careful with these extra tubes hanging on my body. I did feel his arm go around me once last night and I squealed and he immediately stopped and put his arm back where it was. I'm so proud of my honey, he has done wonderful except farting in the bed. We both have and have laughed which I still have to watch. My poor honey can't make me laugh too much now; isn't that a bitch? I live to laugh with my honey!)

Anyway back to those dangers of my insides which even feel as if they could also be easily be pulled on and my tummy pulled apart with a laugh or even a cough. I have to sleep on my back which is next to impossible for me; but in my very own bed with the man I love; much easier and possible. I mostly do love to sleep on my tummy but it's not comfortable at all these days.

Those stupid tubes still pull and pinch when they have the opportunity to do so and I so hate it. Can't wait to get them removed next Wednesday, April 8th at 3:30pm. What a day that will be and the following day too once they are out and I get to move around much better.

I have specific instructions on cleaning my dressing where my tubes are and showering. I also have to empty out the grenade from JP which I will do sometime tomorrow evening. There just isn't enough in there to even empty and this is very good news. This mean that the infections in my tummy may now be gone since nothing is coming out. I will try to empty tomorrow night or the night after but it's not enough to empty tonight which I had planned. It's been since Tuesday night when I first emptied it and changed the dressing with the help of my honey.

My honey helped me shower by standing just outside the shower holding onto my JP while I am in the shower so that I can wash my hair and body. His arms stays solid in the shower with me holding my JP as I comfortably wash my hair and body. He even turns the water on for me since I can't reach for anything because of my right arm being so sore from the pick line. I can't really lift this arm high or reach for anything just yet; still healing there too.

I suppose the pain in my arm may be lasting. That's because the pickline went from the main artery in my upper arm to the main artery to my heart in order to feed me and deliver medicine and pains meds to me while I was in the hospital. What a trippy thing that is. The wire or so it looks like bends over at a strange angle into my arm and when it is pulled out it is long! That dressing needed to be changed once a week and now I don't even have a bandade on it!) I would have photographed it but I already feeel that I have left plenty for your imagination and that was just another weird thing to deal with. My honey got to watch them insert that thing in my arm as they used an ultra sound machine to help guide it into the main vein going into my heart. I was pretty drugged up when that happened which was also a good thing.

I weighed myself today just to see how much more weight I may need to gain or have gain; only to my disappointment only 118lbs today. I'm 5-6 and look much better when I weigh in at at least 135 - 140. I like having curves and it's much healthier for me to do so. Must have meat on my bones!)

I started off with a huge high calorie shake, then an Ensure, and then the diahreah started. My stomach just kind of gurgled and the pipes sounded so very similiar to the ones in the movie I watched last night (Night in Rodanthm). Yes, I watched a girlie movie last night and it was good, 3 and half stars from me. I won't ruin it for anyone but the hotel in the movie is amazing and dreamy. How awesome to stay in a hotel with my honey there!) Beautiful inn on a beach on the Atlantic Ocean in NC. Very relaxing movie to watch and a tear jerker which I wasn't at all expecting.

OK, I already know it (need more food with substance) but in all honesty, I haven't been to the store in 2 and half weeks so lots of food had to be thrown out. I need protein more than anything right now and my doctor stressed this and I am listening. I just don't have any more substance.

My poor bottom has burned most of the day from all of the diarrhea I have had but thanks to having 3 sitz baths which most certainly helped. I just don't have any real food with substance right now (no time for shopping). Grocery shopping for me tomorrow; I just have to create a list tomorrow and my honey will go for me. What would I like to eat?

I still have to avoid all sickness (which is why my honey doesn't want me in public places just yet) and it wouldn't do me a lick of good to get a cold and start coughing my insides out, rip a stitch or ten: all I have currently are these little pieces of tape holding me together and the scar tissue which has since formed since the staples were removed.

Once these tubes are out of me; I can tell I will much more freedom because I can tell that my wound is now healing nicely. No redness except where the stupid JP needs to be removed. It still burns where the incision site remains and my tummy hurts as if I just did 5000 sit-ups. I get to be lazy today and try to heal and can even be lazy in the days to come!) It's my time to be taken care of. We all get this in our lifetimes and then we get to take care of someone else we love; that's how it works.

The Reality of More Treatments....

I thought I would post this wedding photo since it clearly displays the love between my husband and I. Together we stand strong as we fight this terrible disease hand in hand.

My husband and I went to see our Chemo doctor on Wednesday afternoon (I originally got the day wrong- it was Wednesday and not Tuesday). This doctor actually had a wonderful bedside manner which can be quite rare when it comes to hope and surviving with this disease. Many doctors can be negative, and I have come home crying so many times from this. This doctor just felt that this combination of chemo would slow down the growth and cause some tumor to shrink and then I can go another break and then start some more chemo.

It was apparent looking at my CAT scan that I probably wouldn't survive another 4 - 6 months without having more chemo. The doctor didn't actually say this; it was just that obvious. It just seemed like there was just so much cancer in my body!

The Cancer is now growing out of control inside my body with over 12 tumors alone in my right lung and a few in my left lung too. I also have several more tumors in my abdominal wall but yet I am still fighting this and staying strong. I do suffer in pain each day just trying to eat and digest food which doesn't come very easily. My intestines are always making loud embarrassing noises which are another key indicator that my system isn't working right.

I have had a good 14 months off the chemo and its about time to start back. My husband and I have been dreading this for some time now to start the heavy duty stuff which usually adds the insult to injury side effects. It was a dreary feeling having to face this but I still have a good feeling about it and I will continue my fight because I love life that much. I especially love my life with my husband and all of my loving friends and family. Loving people in my life really make a difference.

My husband held my hand the whole ride home and he tried his best to be very strong for me. When we finally got home, I napped while he went to his local pub to talk to friends and to get a drink. He needed a drink and to release some pressure over his worries about his wife's life.

When I finally awoke, I started cleaning and I even filled an order . I then rode my bike 2 miles to the post office to drop off that order. I needed the exercise and I feel that if I keep my body in motion it just might stay there.

I can't sit there and pretend that it doesn't bother me that I will get very sick from the upcoming chemo, becoming this bald and ugly to look at woman; however my husband has agreed that no matter what, he is with me through this fight. He still feels that I am the most beautiful woman ever.

When he got back from the pub just a few hours later, he had just little bit of a buzz. I felt he needed to take the edge off a little so I wasn't at all mad at him. He walked over to me and hugged me and then all of a sudden, tears were dripping off his face. He never cries, but it was obvious he was very worried about me. I have to admit that it breaks my heart to see him cry because he never does. He is such a strong man with the most integrity of anyone I know, so yes it breaks my heart to see him cry. I know in my heart that his heart if full of love for me and that's what I adore about him. I love his sensitivity and most of all his love for me. It's really a beautiful thing and I just wanted to hug him so bad and to make things all better.

I held him in my arms and we cried together. I told him, "we can beat this together again! I will look cute in all those wigs and we can pull those out again. I can match them with my outfits and even the head wraps. It will be OK, we are strong together and it will be OK. This chemo will work and then perhaps there will be a cure soon."

We confessed the usual love for each other and we cried in each other's arms together telling each other how much we love each other that we can be strong together. Its good to cry and to release that fear every once in a while.

How I love my life with my soul mate despite the disease I am suffering, it could be much worse. In life, we are all given and although some things may not always seem fair, life always seems to go on despite.

I treasure the gift of life everyday especially waking up next to the man I love more than my heart and soul. Having that kind of love is priceless and I cherish him always.

Back from the hospital...New thoughts on feeling better...

Well after a couple of days and a painful post about cherishing your good health, wouldn't you know that I just spent a couple of days in the new Kaiser hospital. I was actually excited (just a little bit) because I knew that they had wireless internet. I was thinking that it was all over the hospital kind of like a Starbucks. I was sadly mistaken, no internet for the sick and dying.

That's just great, so the sick and the dying are practically cut off from the rest of the world when they are hospitalized. It's been like that for quite some time and hopefully that will change soon once patients rights are recognized more clearly. I still got to work some on my Newsletter.

Which brings me back to being in the hospital can be so incredibly depressing. Now I know that I will be even more reluctant to go next time if there is a next time, chances are there will be. I guess you have to take everything away if you are going into the hospital but I have to say they at least let my husband bring my dog for a visit and I was very, very thankful for that. She was wearing her "Therapy Dog" Vest and it certainly brightened my gloomy days in the hospital being hooked up to an IV and an NG tube.

So how in the world did I end up in the hospital? (Please read the post before last if you haven't done so already) Well here you go:

The intense pain that I was feeling before just kept increasing each passing day and then each passing moment as it got more and more intense. I must credit my husband who has been so completely amazing through it all including bring me glasses of water, medications, loading the bong for me so that I could smoke; now this really, really, really helped relieve the intense pain for a little while but the pain would always come back and relentless it was. My husband even went to the store for me to get the most embarrassing items that a man could ever have to buy for his wife; enemas, phosphate sodas, stool softeners, and suppositories. He's been through it all with me (seriously) and it doesn't bother him a bit. Can you believe that love? I am truly amazed by it! (the most important thing he does for me is to make me laugh and that he does plenty!)

I remember this one time when I had these same bowel problems he had asked me "honey can I get you something at the store?" I replied back, "can you please get me a douche bag (so that I could use it as an enema)?" "He said to me "Honey please don't make me buy one of those things, those people at the store are probably already convinced that I'm gay, & that will just pull the trigger on that!" I couldn't believe how much I laughed on that one despite the extreme pain I was in. He did so anyway, but that's the meaning of true love.

Now to get back to how I got in the hospital, I then tried each of those items that he had purchased for me at the store, but nothing was working. We were both quite panicked. This was a full blown abdominal blockage that really needed urgent hospital care.

By 10:30pm I finally told him to go ahead and dial 911. The fire department was the first to arrive and they immediately checked my vitals while also sticking those little white round circles with snaps all over me. "That's where they come from!" I thought. I kinda looked like I could get one of those 80's outfits snapped on me.

I was crying and cringing in pain. and had just vomited just prior to their arrival which really intensified the pain when I innitially thought that it couldn't get to be more painful. I didn't even make myself vomit, my body was just reacting to the block. Contractions were happening every couple of minutes. I thought I was going to give birth to Cancer. During a contraction, I was paralyzed in the most severe pain you could ever possibly imagine. It literally felt as if I were about to die or that I was dying a slow painful death that I didn't deserve. I was also nauseated too which didn't help matters much.

I tried my best to talk to the rescuers between the pain contractions as they were asking me detailed questions as what was going on; but thankfully my husband was there to elaborate while the contractions were happening.

The EMS workers arrived a few minutes later & took me for a bumpy painful ride to the hospital. I was sitting in the ambulance with a really nice paramedic that turned out to be a neighbor of mine who lived in the very same complex just behind us. What a small world I thought. I know I had recognized him and he had even been on a few runs with us before. Many of the workers had recognized us and knew the whole shebang about us. That was so helpful.

We have to call 911 each time because I am so stubborn that it's often close to being too late when I do call. I put up with the pain for a long time before we ever call 911 and I think its because sometimes the blockages will resolve on their own and many times they have. It could even be my high tolerance to the pain and that I'm as tough as nails.

I finally got to the hospital and the nurse tried several times to give me an IV. My darn veins were so hard to find and they even rolled a few times as she tried to stab for the vein. It slipped away each time and I kinda felt bad for her. I could see it in her face that she felt she might injuring me but it was actually a good thing. Being stabbed like that was great for getting my mind of the extreme pain I was in. I tried to explain to her and I could tell right away that she had a heart of gold. She went to get someone else to take a try, but they too were having more difficulties than she was. It often takes several times of jabbing and poking just to find a vein. She tried again and by the 3rd time she got it!

The doctor finally came in to see me and was like, "give this poor girl some morphine!" She could tell right away what was happening with my body and that I was indeed in pain. The morphine helped quite a bit for the pain, more so that the pot did. The effect was not much longer because I needed another dose 25-30 minutes later. I also got some Benadryl which helped with the itches that I sometimes get from either the morphine or the Delotted pain medication. Both are very strong narcotics but the bad thing is that these narcotics often make your bowels hardly function. It's like your bowels go to sleep and this in turn can cause severe constipation.

It was about 11:15pm and I need some X-Rays and an Ng Tube. The x-rays were easy enough, but the NG tube is never ever easy. I got a shot of morphine just prior and it still hurt. I had a hard time picking which nostril I wanted to sacrifice for this tube to go down. The nurse then inserted this tube down my left nostril and I had to try to keep my chin to my chest. The whole time it was uncomfortable and very painful as the tube was inserted into my stomach. I felt it as it went down my throat, down the curve scraping as it finally hit the final destination.

I was already ready to get rid of that NG tube. I wanted to fast forward those 3 days of having to keep that thing inserted in my nose. They had to tape it and anytime I caught it on anything I felt an instant painful tug on septum. It was hard to sleep and I almost felt like a horse does when it is head shy. Being on IVs I had to go to the bathroom quite a bit and the first night the phosphate soda was finally working. I was actually going to the bathroom. I had to share a room with a very loud party. The woman, bless her heart, had lots of friends visiting and she too should have had her own room. It was noisy and guests were having to go the bathroom too and I had to wait on someone after I was able to get my NG tube disconnected from the sucking mechanism and IV unplugged. I waited as much as I could and ended up soiling all over myself and my bed. How depressing. I called a nurse to come help me clean up and pleaded that I get my own room just for this reason.

I wasn't able to sleep for all the loud noises from the guests and the constant talking, laughing, and so on. I didn't want to bother them with my problems and requests. They were having fun in a hospital and how rare is that? I finally got to talk with another doctor who too agreed that I definitely needed my own room. My husband and I were out walking and we saw 4 empty rooms. We told her about those empty rooms and she tried to explain to us that rooms are like hotcakes for those waiting in emergency. I had waited all night long for one and was finally able to get this particular room at about 9:15ish (AM).

My husband took off to do some errands and showed up again that evening around 7:30pm with Miss Blue Belle! I was still in the same shared room weighing my earplugs and finally getting some sleep. Blue Belle was so very happy to see me. She wagging her whole body with her ears back smiling. My husband put her on the bed and she came up to me and could not stop licking me in the face. I had to be careful because of the NG tube but she kinda knew that she needed to be careful. She layed down and just stared into my eyes smiling with her ears back. A few minutes of loving on Blue Belle, smiling (in the hospital!), and gratefulness of having someone that really cares, it was time to go to my new private room.

The nurse opened the curtain and to her surprise a cute beautiful happy dog sit laying on my bed. She was also happy to see Miss Blue Belle. She smiled at the nurse and wagged her tail. Another nurse came in to help her move my bed into another room. We didn't have to go far and Blue Belle got to enjoy the ride on the bed. She was wagging her tail and smiling at the two nurses who were laughing and smiling as they moved me to my new room. It was just down the hall and a few people came outside the rooms to see all the commotion of the laughing and to see a happy dog on a hospital bed wagging her tail enjoying the ride. She was quiet but very happy.

She had on her vest and sorry I don't have any photos of her wearing her vest but I promise to post some soon right here. I don't have a working camera right now. My husband opened the blinds and we could sort of see the mountains from Santa Clara. We watched a movie together on my computer (we couldn't get the DVD player to work in the room) and my husband left at around 11pm. He wanted to stay, but Blue Belle had to go wee and she had held it for a little while. I got my shot of morphine and Benadryl and fell sound a sleep in my new room.

I spoke with my doctor the next day as he told me that I would need to get some x-rays of my abdomen. I went for the x-rays and then as we were getting the last x-ray taken, a singe of pain hit me. I felt what appeared to be a rib bone or something on my rib bone. It' was very painful and very tender to touch. I asked if we could x-ray that, but my request was ignored then and I was later brought back down to x-ray the mystery bump at the request of a doctor. The doctor saw me again that night and told me that it might just be a muscle and it may be a knot that could be easily massaged out.

The next day my oncologist saw me before taking out the NG tube and told me that I could go home soon. I was so glad to get that NG tube out of my nose and then to loose that IV pole. My doctor and I talked for a little while of my symptoms and how I was feeling. I then asked him about this mystery bump. He felt the mystery bump and told me that it was indeed a tumor. It had been seen on several CAT scans and I could still live with it. It could actually be very helpful in determining if a chemo is working.

To my horror it is the reality that I really do need to cherish each and every moment that I have and I will need to start more chemo very soon. I'm not sure when and am currently learning to live with the pain in my back as it is still quite tender. I have lots to think about and many questions to ask.

We plan to meet with my doctor next Friday to discuss our options for either chemo or more freedom, versus pain and so on. I will update soon as we do have a lot to think about this week prior to meeting with my doctor. I also plan to call the Cancer Center for America to find out more options.

While I do understand that there are still others who have it far worse off than me, I still consider myself quite lucky. In fact we are all lucky in our own ways. Till then love life and treat others the way that you would want to be treated.