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

One Third of the Way through....

Busy, busy day yesterday.  I had a CT Scan scheduled at 1:30pm and had to fast for it, which wasn't too hard cause my stomach felt like yuck!! My sister Jill picked me up at noon and we drove to Valencia, to get my portable pump removed.  Then the shot of Neulasta, this will keep my white blood count up where it should be so I don't run the risk of infection, (not a good thing while going through chemo). Then on to Tower Imaging to drink two large cups of disgustingly gross liquid dye....bleeeegh!!
Waiting while the dye does it's work, we took advantage of the nice weather outside, and sat on a bench in the shade, so Jill could eat her apple. By the time she was done they were ready to take me back.  Down a long hallway, through several doors. The technician was very friendly and pleasant, he is the same technician that did my scan back in Feb. After changing and laying down on the table, he hooks up an IV of a contrasting dye color and then he leaves the room. This dye gives you a very warm sensation, it doesn't hurt really, it just sort of makes you feel like your blood is really really warm. Then the scan starts. The procedure itself doesn't take very long, and the machine is open and airy sort of like going into a giant donut, so glad it wasn't one that is enclosed....I wouldn't do well in that.  I told the tech that my surgeon asked for a CD copy of the scan, (he didn't really ask) just so Jill and I could look at it ...lol.  So, when we got home I put it in my computer, of course I don't really know what normal looks like so we weren't sure what the results were. It was kind of fun to look at though.

Anyway, I was totally wiped out yesterday. Still very tired and sore today. But I have a lot to do this morning....so I better get with it and get it done. Praying constantly that I will not have a severe reaction to the Neulasta.

Thank you all for your support....sending you love and light!~

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.