4 bracelets on the right......whew!!!

Thank you for all the prayers. I was more nervous then I thought when I went in for treatment today. After last weeks postponement, I wasn't sure what to expect. Kristin and the girls (Kaylin and Lilly, my granddaughters) drove me to the Infusion Center. They waited in the waiting room until I was sure it was a go for treatment.

Jackie and Yvonne are the two nurses that take care of me @ the center. I will try to get a picture of them in the coming weeks. They are the sweetest and most thoughtful Nurses. Jackie attached the needle to my portacath, and drew the blood. She must have been able to tell I was nervous because she asked "are you alright?" I told her I was just nervous about the blood work...and she calmed me down, telling me she was sure I would be okay. Then, instead of waiting until she got all my chemo cocktail ready she came out right away and told me my blood was good, then went back to the vault to get the meds.

It was only four hours today. They can combine some of my drugs now that they know I will not have a reaction to each individual drug. The picture above is all the chemo drugs...plus the one that they had already hooked up. Yvonne told me each of my treatments cost $8000.00 !!!! Thanks goodness for insurance. And I tell you what, I have paid into my insurance for years and I don't feel one bit guilty about them shelling out the $$$'s...lol.

The girls picked me up, we went to lunch and then stopped off at William S. Hart Park, to look at the farm animals and some photo ops.

That's is for now......love and light to all!
Joni

Monday Monday

WARNING!! Gross out alert!
Rough night last night. I couldn't sleep....I think I finally dozed off around 3AM. UGH!!  I neglected to mention in my past blogs that, in addition to everything else they took out during surgery, that I have a temporary Colostomy. I HATE dealing with it. And I don't use the word hate lightly. I almost hate it more than the Cancer. I totally admire people that deal with this permanently, I don't think that is something that I could ever adjust to.  Sorry, if that grosses some of you out. I'm just trying to be real here. And last night was spent dealing with colostomy issues.

On a different note. I am nervous about my fourth Chemo appointment tomorrow. I don't want to be postpone again. Nervous about the injection of Neulasta and it's side effects. I try not to dwell on these things but I do have my moments. I plan on trying to rest as much as possible today. I have been having nerve pain these last few days as well, in my stomach and lower back. You would think with an extra week off between treatments that I would feel better....that has not been the case.

But enough of the pity party.  It's my son in laws birthday tomorrow, and we are planning a luau themed party this Saturday for him.  Fun theme, reminds me of Hawaii....waking up and sitting out on the patio with my Kona coffee, gazing at the ocean and Diamond Head. We had such a great view from our room. In fact that view is the background picture on my iPhone...it helps me remember how good it felt to just sit and enjoy the beautiful view. I'm longing for a tropical vacation..lol...that 's not gonna happen any time soon.

Well, happy Monday everyone...hope you enjoy your day. I plan to enjoy mine.

Second and Third Treatments

My second and third treatments were about the same as the first. I am now down to 4 1/2 hours for treatments instead of 5 1/2. Side effects for treatment number two was the same as one, they just lasted longer. One additional and very painful side effect for treatment three was mouth sores. They lasted about four days, it was so hard to talk and eat.

I get bored sometimes....so tired of being house bound...but I have to remember I can't DO all that I want to do....my body can't take it right now. Its frustrating.

Tuesday June 21, 2011
Checking in for my forth treatment. Started out like any other day, hook me up to do the pre blood work. And wait for results. I was ready to get this going. I wanted to move another bracelet over to my right arm (see photo above....I have 12 bracelets, after each treatment I move one from the left to my right wrist.) The blood work came back with Low White Blood Cells.....we were going to have to postpone this treatment. I was totally bummed. We had to cancel and reschedule 4 different appointments because of this postponement. Being warned that I was extremely susceptible to infection, I was sent home.  In the middle of all of this...my insurance got cancelled in error. What a nightmare. I had to make and followup on SO MANY phone calls I was just running out of energy. it's ridiculous that I had to handle all of it...it was no fault on my part, simply a paperwork mix up, but the amount of energy used to get it all straightened out was huge.

So, here it is Sat. June 25, 2011 I'm going stir crazy. I worry about my white blood cells all the time. What if I am not OK by Tuesday? What then? They got approval from my insurance to inject me with a drug called Neulasta. A growth hormone that will help my body produce more white blood cells in between treatments. From what I read on the Internet this has to be administered no sooner than 24 hours after a chemo treatment...so does that mean I have to go back down to the infusion center to have it done? These are all questions that will be answered on Tuesday. I have been praying and visualizing my white blood cells increasing. I don't know what else to do at this point.

I am very blessed with TONS of family and friends supporting me. Lifting me up with their words of encouragement. This is not a fun journey. My hope is to beat this, to kick this cancer's butt with as much dignity and grace as I can.

Journey with Joni

I have been thinking about blogging for some time now. I have Cancer. I was diagnosed with a very rare cancer called Pseudomyxoma Peritoni originating in the appendix, a mucinous tumor that spreads over your organs and begins to compress and absorb them. Your chances of developing this particular cancer are 1 in 1million.  Lucky me, maybe I should play the lotto!!!

In Feb. 2011, I was having pain in my lower right abdomen and then discovered a hard mass. After many tests, blood work, ultrasound and CT Scan, surgery was scheduled for Mar. 22, 2011. During that surgery it was discovered that the tumors had burst and my insides were covered with the mucinous jelly. A 4 1/2 hour surgery and then the news that I had Cancer was delivered to my family, in the waiting room. I am told there were tears, fears and lots of questions. I was released from the hospital after ten days. I remember being SO GLAD to be home. The Doctors gave me a month to recuperate and I started chemotherapy in May.

May 10, 2011 First chemo treatment
I was nervous. My sister Jill drove me to the Facey Infusion Center in Valencia. We waited for a few minutes in the waiting room...it was crowded there...then were brought back to the Infusion Center. A room with six stations. At each station there is a Chemo Chair, a visitor chair, a TV w/DVD player, magazines, blankets, an artist's sketch pad with pencils. Lots of stuff to keep you busy. Each station is separated by privacy curtains.  They hooked up to my portacath, and took blood. Blood work came back OK and I was good to go for the first treatment. 5 1/2 hours later, I was fitted with a portable pump that I would wear home. It would continue to administer chemo for an additional two days, at which time I would return to the Infusion Center and have it removed. This is a substitute solution for a very expensive oral cancer drug that my insurance would not cover.
First treatment side effects:  Nausea, Diarrhea, PAIN...everywhere, even my hair hurt. Extreme sensitivity to cold in my hands, feet and throat. I even had to warm up my water.