A Mistake that was meant to be....

Well last Friday I had met with my chemo doctor and then afterward; we went downstairs to the lab for blood work to be done for my chemo on Sunday and my husband went over to the Pharmacy to get some prescriptions filled. (refill for liquid Morphine Sulfate = Roxanol and Fentanyl = Duragesic Patches). The Fentanol Patches are replaced every 3 days and I take the morphine only on an "as needed basis". Sometimes I will need to take it several times a day and then I will have those days where I only need to take it once or even none. I have had several days in the past month where I have even skipped up to 5 days but then sometimes I will get a painful blockage or my pee hole will hurt like f*@##ing hell and then I will reluctantly have to dig it out of the hiding place again.

I still can't get over some of the pain that I have to endure just being alive or that I am still alive after going through all of that! I can sometimes feel the cuts still in my stomach and intestines as food attempts to move through my body and this is a very trippy and scary experience. I am always worried about my intestines twisting up or kinking.

Anyway, as I was getting my blood drawn; none of the usual blood tests had been ordered and I was not sure why. It was very puzzling because most of the time the infusion center is usually on it to order these tests for chemo. I told the phlebotomist that I had chemo on Sunday and would need all the blood tests necessary for my chemo. I didn't even think anything of it; I just thought perhaps procedures had changed and I don't need as many blood tests. It was after 6pm on Friday as they had always told me "Don't forget to get your blood tests on Friday after 6pm if possible". It just happened to be after 6pm too?

Well on Saturday, you saw the fun that my husband and I had and then on Sunday I was scheduled to have my chemo at 2:15pm on Sunday. Well Saturday night my honey was feeling so super good about the flight that he tried and tried to talk me into skipping out on chemo and just taking a little break. He is a little bit against me taking chemo without even knowing if it's working. It could not be working and I could be suffering horrible side effects all for nothing. I'm only going to be on chemo until December. Then I have a few weeks to get stronger so that I can go back to work in January. I hope and pray that everything works out as planned and I hope I get the cure!

Well on Sunday, I got a call from the Infusion Center that I didn't get my blood tests done for my chemo and why didn't I get them done?. I was so confused when they asked me this and I told them; "look on Friday I got my tests done!" and when I was at the counter there seemed to be something wrong with the system because I did tell Phlebotomist at the front desk that I needed to get my blood tests for Sunday's chemo. The woman on the phone apologized and told me that my blood tests for my chemo were never ordered. I asked her why and she couldn't tell me; it was mistake and I told her that's OK, "Can I please just have a week break from chemo and just do it next week?". and she said yes! It was a mistake that was meant to be. I could have more feel good days; but I did have some down days this this week. Anyway my honey and I were happy to be able to spend the rest of the day together. I made some my movies for my 2009 Christmas Movie for my family and friends. It's mostly composed of lots of slides shows with music that I feel fits the compilation of the photos. I take so many photos when I am out having fun and it's just way for my family to know that we are still living and having fun no matter what!

Another element of some good news. Well there are some days where I don't feel much like eating but at least I am still getting the liquid nutrition. I kept a food diary for the whole week starting on the 3rd and ending on the 7th of September. I went over with the dietitian what I had eaten for that entire week and going over how much weight I have gained. I am up to 119 - 120. There are 2 pairs of shorts (size 1 and 3) and a size 3 Asian pair of pants that I am unable to fit into! I am still trying to eat as much as I can and on Friday (tomorrow); we get to take my TPN machine into the infusion center (4th Floor chemo area); to have my TPN reprogrammed for 10 hour feedings! Wahhoooooo! I get to have 14 hours to myself rather than just 6 hours. Tomorrow will be my last day of only getting 6 hours of Freedom!

Today will be a very, very hot day (over 106) so I'm staying inside. I have the cave factor going on in my living room (hoping to stay cool) and for some reason today I have more energy than I have these past couple of days. I slept all day long yesterday and even had a fever; actually I think I even slept the whole day the day before as well. I just didn't have any energy and the fevers we kind of low grade (100 - 101.3); but I used Exra Strength Tylenol and plenty of cold compresses on my head, neck, and underarms.

I forced myself up to go on a quick bike ride this evening with Blue Belle and ended up pooping my pants.; OMG! I shit on my brand new beautiful bike!( (that's all could think about all the way home trying to hold myself) I had to turn around to go back home and it was so unpleasant. I hate the unpredictable ways of my bowels, but I got through it all and Miss patient little Blue Belle totally understood the situation and that this this was now my laundry time. I got everything cleaned up, completed 4 loads of laundry and then crashed again with a fever. I awoke, took more Tylenol and then made more cold compresses.

I wrote my doctor because it is now time for me to get my stint replaced on my ureter. May be this is why I'm getting fevers? It's supposed to be changed every 3 months but now I'm not so sure any more. They seem to be blaming the chemo for all the pain I am experiencing there. I have to be a pain in the ass to have deal with for doctors and my health and insurance companies. I must be a nightmare for them. I totally lit up when I heard Obama's speech last night and it sure made me feel so much better and that "Yes, my life is worth saving!". I like knowing that if I do end up loosing my insurance; we would easily be able to get the public option which would not discriminate on my health or that I wouldn't be dropped because of my health from current provider. It always scares me that they could easily do that and I am so glad Obama is doing something about that. This is so important. It's not fair for companies to drop individuals who have paid their dues and for those who need to live but can't afford to. No one's life should ever have a price on it or a maximum cap. What are we, like dogs? Not worth saving? It's despicable and we should be all about ProLife because Life doesn't mean it's all Fetuses!) We need to protect the Non-Fetuses too!

Well back to my worthiness of spreading the cause of early detection for Ovarian Cancer. God I wish I would have known much earlier than to have had the nightmare of finding out that it was so advanced and that I would be living with this disease for the rest of my life! Well if I can spare the lives of many women with my experience; then why the hell not? I don't want other women to have to go through all that I have. It sucks, life doesn't suck, Cancer Sucks!

I hope one day there is a cure and I'm so glad to have found out that L'Oreal Paris is involved with helping to find a cure by raising money for Research. They coined the phrase "Because I'm worth it," more that 30 years ago in order to celebrate every woman's worth and self esteem. This empowering phrase represents the company's long-standing commitment to female health and well-being. Since 1997, L'Oreal Paris has dedicated significant resources to raise awareness of ovarian cancer and to raise funds for research to discover an effective method of early detection that will hopefully one day, also lead to a cure. Love the lipstick! It's so awesome!

More Fevers....

Last night was a nightmare and we nearly went in to the emergency room. My temperature had risen to 102.5 and then it hit 103.1. The congestion from the cold had also gotten worse; I couldn't stop coughing up phlegm. On the bright side of things perhaps everything is coming out, but then again I had another night like this a week ago; let's hope everything is working it's way out. It was so incredibly disgusting; I was completely grossed out. I thought I was getting better from that cold but lately the symptoms are back and it could be that I'm fighting some kind of infection somewhere inside me. What scared me most was my honey pleading with me to not die on him!( I cry every time I think of that moment and I feel that I'm still tough as nails and can lick any cold I'm given. I will and I have that WILL to live; I'm just stubborn as hell about going back to hospitals.

I really have no idea what is going on inside my body any more. Since being cut open; my body is completely unpredictable; especially my intestines. They are still trying to figure out what to do since they have been sewn up, taken out of my body, restructured, resectioned, and then placed back inside me. The scary thing is; is that I could have another infection which may require hospitalization. I'm just not ready to be hospitalized just yet; at least that is what I'm telling myself.

I was so hard headed and my poor husband thought he was going to loose me last night!( He was scared, but he kept his cool despite my stubbornness of going to ER. He gave me Extra Strength Tylenol, plenty of ice water, and kept changing the cold compresses on my head and neck every half hour. We were both on a mission of love. He also kept a close eye on my temperature to see if we could get it down to normal (we were literally taking my temperature every 10 minutes). We got the fever down to 101 and then both of us were so tired that we just konked out. I kept waking up to go pee and I also had that strong urge to puke. I did a few times but it wasn't a lot like it has been the last couple of days.

He was on the couch and I soaked the bed with my sweat. Perhaps those are the hot flashes that the Tamoxifen causes? Well those hot flashes never made me horny but I still have faith that something out there can do it for me!) I hate having such a wonderful husband and just never feeling sexy or making love to him. It's so frustrating that this disease takes away so much from me. Maybe a few more days on this drug (Tamoxifen) will make a difference. I don't know if it's my eyes playing tricks on me, but those tumors on my side don't appear as large as they were a few days ago.

(note the bumps on top of my rib cage, yes I have scars everywhere; oh and did I mention the rash I also got from all that itchy tape from my nephostomy tube? Well that's still healing too!)

OK how in the hell did I get confused between Tamoxifen and Herceptin? Not sure how that happened but it did; maybe it's my chemo brain. Perhaps this was just one of the drugs Dr. Chemo had suggested but there are lots of drugs out there to consider ridding my body of this monster!)

The best part of today and everyday is being able to take a shower. I can't deny that as a gift to life! After having to take so many ho baths with my baby wipes; being able to stand up in a shower (not have to worry about taping myself up), but staying in the shower as long as I wish, (my honey no longer has to stand outside holding a bag) washing my hair and just feeling the warm water on my skin with out any worries! It was like heaven even though I had been so incredibly sick the night before. Especially with that amount of sweating, I reaked of BO. I had just changed the sheets (had just washed and folded them) and now I have to change them again! It never ends sometimes and I'm still as happy as ever to be in my own home and not in a hospital. Please, GOD can I stay home and heal!) That's all I wish for; I don't wish to be hospitalized anytime soon!

Well, I am still trying to get my weight back up too. I weighed in this morning at 111.5 and no appetite what so ever. My honey went to Panera Bread for a sandwich and some French Onion Soup. I ate half of mine and some of the bread and then later on I went to Whole Foods for more Tuna Fish. They have the best Tuna Fish ever and just like Gilda Radner; Tuna Melts happen to be my favorite food also!

Right now I have to eat what I can stomach and I can't pass up a good Tuna melt; especially mine! I use Veganaise Mayonnaise, chopped celery, and a little bit of dill mixed in. The cheese varies from Cheddar to Provolone, a nice huge slice of a reddish purple tomatoe, and of course salad greens. Can't forget the Kosher Dill pickle! Lots of mustard! = Yum!

Life for me is too short to only eat Bananas, Rice, Apple Sauce, or Toast. It just gets old after a while and since my appetite isn't so good, I kind of have to go with it. I can't eat fiber at all and that means no Wheat Bread for me. My short little intestines just can't take too much Fiber or else the spasms act up. Whole Foods happens to have the very best "White Bread" that goes perfectly with my Tuna Melt Sandwiches. That will be my 4th of July lunch!)

At night I have been having to eat smoothies which are really old about now. I'm so sick of smoothies, but sometimes I have to. I've been doing the muscle milk mixed with more protein and its makes it kind of slimy, but after a joint, I don't seem to care; I down it just like that!) Just before that, it would have been impossible; so there you go; a plant is helping to sustain me!)

I hope these fevers go away tomorrow (right now I have a temperature of 100.7) and I pray that we don't have to go to the emergency room tonight. That would be a sucky way for me to spend the 4th of July!( I almost did last night which is what really scares me; I do hope nothing is seriously wrong with me. For now I will try to keep the fever down with my cold compresses, ice cold Gatoraide and water, Extra Strength Tylenol, and Motrin (600mg). I have food in my tummy (icky Tiger Milk Shake and Ginger snaps); so hopefully this fever will not last. It's been a low grade fever for most of the day (99.3 -100).

Tomorrow is supposed to be a fun day and I hope to write about a fun day tomorrow with lots of great photos. No more hospital photos or experiences with good or bad nurses and doctors. Happy 4th of July! No Drama for anyone!) Just Fun, Love, and Peace!)