I've been pretty emotional lately.  With so much family and friend support I had been, for some reason,  feeling very alone. Maybe depression or something along those lines. Don't get me wrong, I feel the love still from everyone. I just have difficulty making important decisions.  AND in the middle of all this my step father passed away after months of suffering.

I blog to let you all know how and what I am going thru and what I am feeling. I am in pain 24/7!! And that is probably how it is going to be from now on.  I have developed a new sharp stomach pain, that really limits what I can eat.

After ending up in the hospital at my last chemo treatment, I and my family have been feeling ignored by my oncologist.... appointments taking three months to get, no plan at all for further treatment.... etc etc.  After MUCH loving encouragement from my family I made an appointment with my Primary Care Dr.

That appointment took place yesterday. My sister Jill and my Mom came with me. I made a huge list of things to talk to him about. He addressed them all.  I am very glad we got him involved in my health care. He uped my pain meds.  He will be calling Dr. Dekker and helping me with him, staying more involved in my treatment.

I have had a huge hospital bill outstanding since March. There were problems with it because my insurance messed up and didn't credit some of the deductible that had already been met. My health insurance FINALLY paid the amount they owed and I just received news that I qualified to have the rest of the bill written off.  Good things like that don't normally happen to me.....i'm happily overwhelmed.

So, I don't know what happens from here....I'm not afraid to die. I'm afraid of suffering (I admit i'm a wimp).. I also don't want to be a burden on anyone. But enough downer talk. I feel very blessed today. I have a friend named Caren that is taking me to the Getty this Saturday. And I may be going to a birthday party at Castaic Lake on Sunday.

So, until next time .....love and light.
Joni

Chemo Side effects

A lot of you have been asking how I am doing after my chemo treatment on Thursday. So I thought I would blog a short update.

Something I left out of my last blog with regard to my surgery. On top of all the difficulty recovering I got an infection on the incision site. I won't give you all the gory details, just some of them. The wound was about an inch and a half long and 3/4" deep. Since I couldn't afford to pay someone $25.00 a day to change the dressing, I had to learn how to dry pack an open wound, for weeks after returning home. Owie!!! Oh and I forgot to tell about the night they made me sleep with my head tilted way down below my feet...LOL. They're way of raising my blood pressure. It was pretty funny.

As you know, I had chemotherapy on Thursday, March 29, 2012. I still felt pretty good on Friday.

Saturday: was very tired, with a little bit of nausea.  I rode with Kristin to deliver some cake pops to Zac, April's boyfriend, for his movie set.

That was a two hour ride there, took them to lunch at Chick-fil-A (yummy) shopped a little and then headed back home....another two hour trip. I was tired and starting to get sore. We participated in Earth Hour. The girls were excited about that. For those of you that don't know what that is;  for one hour (8:30pm - 9:30pm) we turned off all un-necessary electronic devices. (yes, even our phones...lol). We lit a fire in the fireplace, lit a BUNCH of candles and played hide and seek, well, the kids played, I watched.

Sunday:  Woke up very sore and nauseated. I had a very hard time staying awake, so I finally just gave in and laid down for a while on the bed. Some diarrhea later in the evening and early to bed.

Monday:  So far today, still very sore all over, kind of like the soreness of having the flu, but without the fever. And a little bit of nausea. I'm hopeful I am over the worst of the side effects for this round.  It's gonna be different for a few treatments because Dr. Dekker is switching up the cocktail for the first four treatments...so I won't have any regulation 'til after my 4th treatment.

Just a short update for now. 'Til next time ... Love and Light to you all.

Joni

The journey continues

Hey Peeps,
It's been a while, I apologize for that....especially for the worry I have caused you.  I think last I blogged was Oct. 2011 and SO much has happened since.

Disneyland, of course, was a blast. Being in a wheelchair definitely had it's advantages, no waiting in line, and there was plenty of people to trade off pushing me around. Side note......I have and annual passport, so if anyone ever wants to use me and my 'Front of the line' access, I would be happy to accomodate...hehehe! Just saying...lol  ;-) Here is a picture of our group:

November 1, 2011 was supposed to be my last treatment in the first 6 month round of chemotherapy. But my white blood counts, and platlets were off and I just kept losing weight. So, Dr. Dekker opted to let me take a break.  Turns out it wasn't much of a break, I continued to lose weight and strength. I developed neuropthy in my hands, arms, feet and legs...making it more difficult to walk.  I was able to see my surgeon, Dr. Lin and get surgery for the reversal of my colostomy scheduled for December 30, 2011. So I ended up spending New Years and my Birthday in the hospital. Eleven days in the Hospital this time...and longer to recover, it was just harder on my body.  Biopsies showed cancer was still present in my body....no new growth, just residual from after chemo. Thank you everyone who visited me and sent beautiful flowers.

As I was recouping from surgery I received a phone call saying I no longer had a job to go back to and my state disablilty was going to run out the 20th of March.  Needless to say the combination of being blindsided by work, the pain, the lack of sleep and the fact that I still had Cancer and would have more treatment, caused me to spiral into a deep deep depression. For me that means I hide away from everyone and everything. That is why I was not on Facebook......I honestly couldn't think of a single good thing to say. I had NO hope, no faith.....I asked God to bring me home. It was a very dark time for me. After trying a couple of different pain medications, my Dr. finally found two that worked good enough to take the edge off and I could start functioning.......although I still am not sleeping ( working on different meds for that as well). Taking Valium right now and that relaxes me, but not enough to sleep. It's a horrible feeling.....just watching the clock, the minutes, tick away.

Saw Dr. Dekker twice in the last few weeks, my sister, brother and sister in law went with me to different appointments....( so blessed to have them in my life). Did LOTS of blood work, and another CT SCAN ( a picture of the CT SCANNING machine to follow) the scan showed new Cancer growth, on the outside of my liver, outside my colon and lymphnodes, so, I start Chemotherapy again next week, . With a new type of drug. I'm nervous about that and what new side effects it will have, but I'm ready to try. I have just started having enough hair to style a little and now I may lose it AGAIN.!!!!

This is the GROSS liquid dye that I have to drink before the SCAN....thought I was going to throw it up......but I didn't.

I have applied and gotten approved for Federal Disability. I also have gotten a Disabled Placard from the DMV to take with me when I am driven anywhere, because of the neuropathy I cannot drive. I cannot stand for more than five  minutes without being in extreme pain ( even with pain meds). So watch out for me in Walmart and Target....those motorized wheelchairs go pretty fast.....LOL!!!!!

 I'm worried about my High School Reunion coming up in September, that will be towards the end of my therapy and I remember how bad I felt at the end of my first round of chemotherapy. I will most likely have to be in a wheelchair, but we shall see.  I bought my ticket, I want to go SO bad and to see everyone that has been SO supportive to me during this last year, I want to see them, look them in the eye and tell them just how much they have made a wonderfully positive difference in my recovery...I wouldn't have made it without them and family of course. I try not to think about my chances of survival....but can't help wondering if this reunion will be the last time I am able to see you all.

I'm grateful to those of you that continued to post on my facebook wall, even though I didn't answer, and those of you who called and called even though I didn't feel like I could answer and talk......you all kept at me and helped me get through this horrible depression. Thank you.!~

So that is where I am at right now. The Cancer is still here....but so am I:  Round one goes to cancer. On to round two.

'Til next time, love and light to you all.....

Love, Joni

P.S. For some reason my spell check is not working ....so be patient with me if I have mis-spelled anything.