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.

Six more months to go.....ARRRRRGGGGG!

It has been a while since I blogged....Sorry, I have just been feeling REALLY crappy. With no good days in between treatments. AND a lot happened today.......the day that was SUPPOSED to be my last treatment.

Let me go back to last Thursday. I woke up with a bloody nose....a really bad bloody nose that lasted a few hours....( and yes...my nurses and Dr. did yell at me about not calling him) and then started getting little blood blisters on my arm. So, my daughter and sister started looking stuff up online and we pretty much figured out my platelets were low. The lowest I can go and still receive treatment is 100,000, Today I was at 70,000 (he said I was probably much lower on the day of the nose bleed)Just to give you an idea of where I normally was... on the day of my last treatment I was at 152,000. So we were not surprised about my treatment getting cancelled today.

However, I wasn't prepared for the rest of the news.  Dr. Dekker ordered a blood transfusion immediately, so Jill drove me to Holy Cross Hospital and got my blood typed today and will do the transfusion, at the same Hospital tomorrow, and apparently it takes about eight hours.

Then he told me I have a very high risk of this Cancer coming back.  So he wants to do six more months of chemotherapy.  He will be taking one of the drugs out of the cocktail that he says is the one that causes 80% of my bad side effects. So, we shall see, SIX MORE MONTHS, I hope I can do this.

The waiting room at the Admitting office had some really pretty pictures on the wall of flowers....beautifully done. So, I thought I would share one of my own flower pictures with you.....something to cheer us up after all this craziness.!!! This was edited to look like an old antique picture.

Oh, I forgot the one piece of good news...my latest CT Scan came back clear. YEAH!!! Another piece of good news is.....We are going to Disneyland this Sunday....(I will be in a wheelchair of course) but I should be feeling better, because of missing the treatment today and the blood transfusion!!! I am REALLY REALLY looking forward to that.

Well, that is all for now ..... I am pretty wiped out ...and tired. So 'til next time...LOVE and LIGHT to you all. All your love and support really keeps me going.
Joni

Eight down and four to go!

I haven't blogged in far too long.  I'm just not feeling good at all. The ever present chemo-sobby, the pain and the extreme fatigue. I hate feeling this way...and start wondering if I will ever feel well again. I know I am being a little emotional, okay, a LOT emotional. But I never said I was perfect.

I did manage to squeeze in a short trip to Las Vegas with my family. It was the first time in a very long time that all three of my kids and I had a trip together. It was very hot there but we had a lot of fun. When  I got tired ... I just went back to my room and rested. And everyone else continued exploring and having fun. Kaylin and Lilly (my granddaughters) had so much fun, I had fun watching them. Auntie Jill had given the girls an assignment for Vegas, she told them what pictures she wanted of them. For example, she wanted Kaylin to take a picture touching the Eiffel Tower, and Lilly touching a fountain. They love Auntie Jill and couldn't wait to take the pictures for her.

Well...I have two more treatments under my belt...they just seem to get progressively worse. After maintaining my weight for a month I lost another 9 pounds, as of my 7th treatment. It's not a way that I would recommend to lose weight..lol.

I have two very caring nurses, Yvonne and Jackie, that take care of me & are so special to me. They do this day in and day out but you can tell they really care about their work. They are always there if I need to call them or have questions. And very tuned in to how I am feeling. I remember one Thursday when I went in to have my pump removed, I answered the "Hi, how are you?" with the standard "I'm fine"....and Jackie looked at me very doubtfully....and then I said..."Yeah, I'm feeling pretty bad." My throat had swollen up on both sides and I had a fever....and just an overall feeling of yuckiness... Jackie just sort of chuckled and said.."We can usually tell if you are not feeling well." They took care of me, making sure I was seeing Dr. Dekker that day so we could get the swelling and fever under control. At my next appointment they allowed me to take a picture with them so I could share it here with you on my blog. My ever supportive sister, Jill...took this picture for me.

That's Yvonne, Me and Jackie.

I'll include a picture of the room I sit in too ... just so you get a picture in your mind.

It's a nice room, decorated and furnished as comfortable as you can make something like this. Each person can have up to two visitors. There are curtains that are pulled for privacy during treatment. On this day, as is often the case, I was the last one in there for the last hour of treatment.

My brother Jack and my sister in law Sandy took some time off on one of my Thursday appointments. Kristin drove and me, Kristin, Kaylin and Lilly met Sandy at the house...she made lunch and we all went to the pool. Kristin's very pregnant sister in law Bridget met us there and then Jack came and joined us as well.  It was so nice to do something normal, I sat in the shade and enjoyed watching the girls play with Sandy in the pool, they sure do love her and Jack.  Jack took me to the infusion center, which is right down the street from his house, to get my pump taken out and my Neulasta shot. Then back to the pool for a bit. Nice day.

Anyway, I'm gonna make this short. It's hard to blog when I feel so bad. I don't want it to turn into a whine fest.  Relay For Life is coming up soon, I'm looking forward to that. Sept. 10th & 11th. Til next time.....love and light.
Always,
Joni

I'm Half way there.........

    I think the cumulative effect of six doses of intravenous chemotherapy is really taking its toll ... everywhere (body and mind). This one really knocked me down hard.

As a matter of fact, I have now met my inner "Chemo-Sobby," ( I stole the chemo-sobby idea from another blog....it's just too cute.) But,  I'm half way there.

     I was able to visit my friends Lisa & Aaron and hold their new baby boy Mannix......I can't tell you how therapeutic that was. I knew if I didn't get over there today....that I wouldn't feel up to it for about a week and a half.  But we made it today....what a sweet little guy he is, so happy to have been able to hold him.

    Some GOOD news:  CT Scan results came back good. There isn't any new cancer growth so far. Let's keep our fingers crossed.

     My Doctor doesn't pull any punches....he tells me this is going to hit me harder and harder as treatment progresses, and so far....he is totally right (thus the chemo-sobbyness) mostly it hits me at night, laying in bed and wondering why I am going through this...wondering about the odds of survival...etc. I don't dwell on it...I know how damaging that can be. But going through a life threatening illness such as this really changes your outlook on life.  I can't do the things I could do before, simple tasks take SO MUCH ENERGY and EFFORT. It's frustrating. Trying to keep my mind busy ,and not over do it physically. Trying to read without falling asleep. I sleep SO much.

   
    Onto some fun:  The ACS' "Look Good Feel Better Seminar" was really fun!!! I was in a room with 8 other women (all diagnosed with cancer). We got nutrition tips, make up kits and hands on demonstrations, we tried on wigs  (I came home with two, see pictures below). How to tie and wear scarves....just a fun time. All of the supplies are donated. The women instructors, donated their time. It is such a wonderful program. What I found very interesting is, out of the 9 of us that were there, me and one other woman were the only ones that did NOT have Breast Cancer.  Just goes to show you how common breast cancer is.

    New side effects this time included:  A funny little itchy rash on the back of my calf. Some bruises, my eyelid muscles feel very weak, its hard to keep them open.  And of course the usual side effects I have had from day one, diarrhea, severe sensitivity to cold, hands feet and tongue tingles, fatigue, nausea, bone and stomach pain...etc.

    Anyway, I realized that a lot of my Facebook posts are "cancer" related and I am really trying to not let my inner chemo-sobby take over and be better about posting other topics, its difficult to do when this Cancer and treatment is consuming my life right now....but I promise to do better.

    I love you all......your support gets me through the dark times. Til next time....as always sending love and light.

Joni

Treatment #5 and Misc.

I'll start out with something positive. .... . LOVE this cooler weather....what a Godsend.

Dealt with yet another insurance nightmare. As you all know, I have a colostomy. I was running low on supplies so I placed and order. After three days of the order in a pending status I called to see what the hold up was. My insurance authorization had expired. REALLY??? They only authorizes three months worth of supplies for something that I will need for at the very least 9 months. I just don't get it.! It's frustrating, to have to make the phone calls back and forth between my Dr. and the supply company. My Dr., of course called me right away and said as soon as they fax the information to him he will authorize it....(thank goodness, he is on the ball). So, I think it is all squared away.

I had treatment number five yesterday. It went well, a little longer than usual, but no blood work hiccups. I am really noticing the fatigue being worse...can hardly keep my eyes open and walking for any length tires me out. Side effects, so far, the extreme sensitivity to cold. My hands and feet have that painful tingley feeling, like when you hand falls asleep and are just waking up.

I'm trying to decide what to do with my hair. The back is looking sort of raggedy... but the front isn't falling out too bad. I was thinking of just coloring it all light blonde like the front of my hair and see how it looks after that..you really aren't supposed to colortreat your hair while undergoing chemotherapy, but I figure "what the hell" if it doesn't work out I will maybe shave it.  Or just start the scarf and hat wearing. I have enrolled in the "Look Good Feel Better" seminar at the local American Cancer Society. It is on July 18th, i'm really looking forward to it. I'll get instructions on scarf tying ideas, wig ideas, makeup application with free products too, should be fun.

My sister Judy is down here for an appointment at UCLA today...I am hoping I will be able to see her tomorrow with Jill when we go to my appoinment with Dr.Dekker. He will have the results for the CT Scan I had done on June 30, 2011. I'm a little nervous about that...hope it shows that the chemotherapy is doing the job and nothing else is growing that shouldn't be.

That's it for today..... I thought I would include a photo of me wearing the portable pump attached to me....just so you get the visual. This is what I wear home after treatment for two days...and then go and have it removed and get my shot of Neulasta. The patch on my chest is the needle contraption that is attached to my Portacath..which is installed under my skin.

As always..sending light and love....
Joni