The praise first… We were awakened this morning to a phone call from a representative from the Nexavar Reach Program.  I had never heard of them before, but they were calling to offer financial assistance to us in order for me to have the drug even if my insurance denied it.  So we began faxing in our information, signing papers and the like.  She was telling us that we qualified for a 75% discount.  That means that instead of paying the $6000 dollars a month, it was going to be $1500 a month.  Well, we still can’t afford that.  She said it was because of our income, but if we wanted to request more help, to write a letter to Bayer (the maker of Nexavar) and ask for more help.  So we did.  We faxed it in and were hoping to pay between 5-10% ($300-$600) a month.  Way better than either of the other two prices!  She said she was waiting on the denial from the insurance company – because they would deny for sure.  So I called my doctor’s office to let them know that they needed to fax over the denial.  The lady in authorizations said that Blue Shield hadn’t said no yet, but that they were waiting to see how much assistance I would get from the Nexavar Reach Program.  So they were both waiting on each other.  Isn’t that just like bureaucracy?  So I suggested that my doctor’s office call the representative from Nexavar Reach.  I didn’t hear anything for a while, and then I got a phone call asking for my address.  Didn’t hear anything for another long while, so I called the doctor’s office again.  The nurse practioner picked up and said he was actually on the phone with the clinical pharmacist for Blue Shield, and he’d call me in few minutes.  Well he called and said, “They have approved Nexavar indefinitely!”  My insurance is going to cover the $6000 monthly price of the medication – indefinitely!!!  Cost to me $15 a month!!!  I can’t believe it!  What a blessing!  What a provision by God!  What an answer to prayer!  I ordered it from a speciality pharmacy in Orlando, FL, and it will be here on Tuesday!  🙂

With this medication comes hope that it will be the one I need!  I am praying that it will relieve the pressure on my rib cage and will take away all the cancer in my body.  It is a good day…well at least there is some joy in the midst of this pain!  

Just a follow-up…I was able (through the help of a nasty enema) to have a bowel movement.  It seems to have helped with the pain.  My mother-in-law said I get two big stickers for going poo-poo in the potty!  🙂  Potty training is so fun; it puts you in a different frame of mind for sure!

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Early this morning the nurse practioner called me to let me know the status of what was going on.  He said that the doctor was waiting on a call from UCLA, and then he’d call me.  It was getting later and later and I still hadn’t heard anything.  Finally about 5:30, he called.  He said that after talking to Dr. Chow at City of Hope, I don’t qualify for any of the open trials there.  He said that Dr. Chow recommended an oral drug used in liver and kidney cancer that has shown some positive results in a small trial with angiosarcoma.  It starts with an “N”, but I can’t remember the name.  The doctor hadn’t hear from UCLA; he said that he should hear on Monday.  

So I am still in a sort of holding pattern until Monday.  I have more of a direction but no sure steps yet.  I am thankful that my doctor called me to let me know what was going on.  If we do go for the oral drug, it will have to be approved by my HMO.  That is something we can be praying about.  I think that drug is the one that the study in France is testing.  We’ll be doing our own clinical trial right here in So Cal.  

Tomorrow Kai is taking a week-long vacation to Fresno.  Hopefully we will be able to get some much needed rest.  Kai has been waking up at night.  This morning he woke up at 3:30 and didn’t go back to sleep.  He took a 3 hour nap at school, and we wore him out pretty good after I picked him up, so hopefully he’ll sleep through the night tonight. 

Thank you for all the emails and encouragement in this time of waiting and uncertainty. 

Love,

Monica

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Wow!  Today was such a wonderful distraction as I wait for the doctor’s appointment tomorrow.  I was able to go to the Price is Right with some of my co-workers.  It was a blast.  One of the teachers was called down.  She just about fainted.  She got down to contestants row and ended up winning a BBQ.  It was so great to see her on stage.  Then when her game came out and the prize was announced it was “A Brand New Truck”.  A Ford F150 Cherry Red!  She played a game with 7 one dollar bills…anyway, long story short…SHE WON THE TRUCK!!!  Then she was spinning to go to the Showcase Showdown and got 95 cents.  She went to the showcase and almost won another car.  She didn’t get it, but it was such a blast cheering for her and watching her priceless expressions and body language.  The episode will air on February 17th on CBS.  It was so much fun!  🙂  

On another note, Sol and I signed the agreement for the house on Magnolia!  🙂  We will open escrow tomorrow!  It is so exciting to finally be moving forward towards buying a house.  A lot can still happen, but we are started in the right direction.  Next comes the appraisal and inspection!  Hopefully the inspection finds everything hunky-dory!  😉  

Please pray as I am heading to my appointment tomorrow (Wednesday) at 9 am.  I don’t know what he’s going to say, but I think that they’ll be changing my chemo and that scared me a bit.  The last 6 months…were they all in vain?  I don’t know.  I’m sad, anxious, frightened and mad.  Today for a while I forgot about my trial and that was a blessing.  Now the real life is back, and it’s scary!  I am brought to tears all the time and know that this it is so hard for Sol to not be able to fix it.  These men of ours want to fix everything, and I think he feels helpless.  Thanks for your prayers and support for tomorrow.  I’ll post when I get a chance tomorrow. 

Much love,

Monica

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Merry Christmas and Happy New Year to you all!  

We had such a great time with my family at the Lodge.  It was fun to see the old stomping grounds and tour the small quaint town of Occidental.  My sisters and I went through the quirky stores and reminisced all the times we walked around that town.  Christmas with the family was wonderful.  Kai LOVED Christmas.  He loves Santa and presents and Baby Jesus!   He was so cute on Christmas Eve.  After leaving cookies and milk for Santa, he was laying in bed talking about how Santa was coming and bringing presents, but the little man in Rattatouille wasn’t getting any presents because he’s not nice.  He kept jabbering on and on about everything.  It was so cute – he was too excited to fall asleep!  Christmas through the eyes of a child is so much fun!  He really was spoiled with the mountains of presents he received!  

After the fun at the lodge, we spent a few days in Fresno with Sol’s family.  That was a nice time as well.  We chased a movie all over town…it was sold out twice when we tried to go, finally we caught the 9:35 pm showing.  We went to breakfast with Nana and Pampas, and then headed to the park where we met up with Scott, Susan and Niana.  The kids ran all over the place, and Kai ended up taking a 3 1/2 hour nap as we drove home.  

For New Year’s, we hosted an East Coast New Year’s Party.  It was fun.  We played games and ate sandwiches and pizza.  We toasted in the new year at 9:00 pm and everyone was gone by 9:30.  It was a fun time with friends, and we welcomed in the new year with hope and anticipation.  

On Monday the 29th, I had another CT scan; today I got the results.  The new year seems to be off to a rocky start.  Not the news we were hoping for.  The nodules in the lungs seem stable.  However, the ones in the liver have all grown 2-3 mm.  There are also more showing up in the liver than before, and that really concerns the doctors.  I have my appointment on Wednesday of next week.   I don’t know what the next steps will be – whether we will continue with this chemo (it’s been 6 months with minimal results) or begin something totally different and new.  

Please pray as we decide what to do next.  We never made that appointment with the other oncologist – maybe that’s where we’ll start!  

Love to you and may you have a blessed 2009!

Monica

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We had the greatest time at Disneyland.  Kai has been watching Mickey Mouse Clubhouse, so he knew all the characters and was so excited to see all of them.  Disneyland is such a different experience through the eyes of a child.  We ended up getting annual passes so that we could go back all year long.  It was such an awesome blessing to have the hotel.  I was able to go lay down (before Kai) when I got worn out.  Then Kai had his naptime and was ready to go again.  We even watched the fireworks from the hotel room!   We spent some time in Downtown Disney – Kai was a big hit dancing up a storm in front of a live band.  He was busting out all sorts of moves I’ve never seen him do before – break dancing being one of them!   It was the cutest thing.  As we were getting in the car to come home from 2 days at Disneyland, he says, “I want to go to Shamu’s house.”  Is this kid spoiled or what?  😉

Check out these moves!

As for chemo, it keeps going.  I have been getting more and more tired with each one and spending time resting.  However, I have been able to enjoy my family and time with friends.  The eating has been taking center stage.  It has not been easy, but I feel better about what is going into my body.  Whenever I want to eat something I know I shouldn’t, it’s easier to resist because I know I’m not doing this to lose weight but to save my life.  When I put it that way, time with my family is way more important than that donut!

On Sunday, we went to the memorial service for Andy Caldera – 18 year-old who passed away from testicular cancer.  Our hearts break for his family.  It was a very difficult service to go to being in the midst of my own battle with recurrent cancer – a little too close to home.

We had a wonderful Thanksgiving with the Torres family.  Kai loved being around all the kids, and we had a great time hanging out with everyone – eating way too much, checking the sale adds, watching football and playing games.  My plate didn’t look much like Thanksgiving dinner.  I had a huge salad with some turkey on top.  It was actually quite tasty, but definitely not the traditional Thanksgiving flavor.  I tried to make cauliflower mashed potatoes, but they were the worst tasting thing I’ve ever made.  The texture was perfect (thanks to the vitamix), but we wanted to keep them raw – not the best idea.  Make sure you steam them first (loses nutrients, but surely tastes better!).  It was nasty!  🙂  We tossed them and went without!

On the way home, we bought Kai a new car seat today.  Whenever he falls asleep in the car, he wakes up complaining “My butt!” or “My legs!” – with good reason.  We didn’t realize how hard his chair was, and we think his legs hit the chair at a weird angle making them fall asleep, so they’re painful when he wakes up.  Now that he’s in pull-ups (yay for potty training!) there’s not as much padding on his bottom.  We splurged for the car seat with the luxury foam!  So cushy!  I’m jealous!  Hopefully, no more “My butt hurts!”

I am waiting for the results of my bone scan and x-rays.  I was kind of glad to not have them before the long weekend, but am anxious to find out what they showed/didn’t show.

Tomorrow we are going to look at more houses.  It is exciting, and I hope we find something that we really
love and can afford!  🙂

Next week, I don’t have chemo!  It’s my week “off”.  Yay!  I’ll be reading all about nutrition and maybe going to therapy for my arm.  It keeps swelling and going down and then swelling again.  In order to get a compression sleeve, I have to go through two weeks of therapy first.  We’ll see if that gets started this week or not.

Well, I’ve got to get to bed now.  I’m up past my bedtime again!

Take Care and I hope you had a very Happy Thanksgiving!

Monica

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Today at chemo I guess there was good news. My doctor went and looked at the scan at the hospital and after comparing the largest tumor, found no change. That was what he was hoping to find (that or shrinkage). He says that it is not out of the ordinary to see a scan that shows good shrinkage and then a stable one. He thinks that the growth shown on the smaller tumors could be human or imaging error and not to worry about it. It was good to hear, but I’m still unsure. The one that showed up on the spine was not imaged in the July scan or the September scan. They didn’t go that low. It is new since March, but so is everything else.

I think that Sol and I might make an appointment with another oncologist just for a second opinion. Sol’s boss says that this other oncologist is known for being “creative” in pursuing treatments. Another thing we will do is send my scans to two facilities for further review and 2nd opinions. None of this could be bad to do.

As for our eating change. It’s going well for me, but last night was quite eventful. After playing video games at a friend’s house, Sol came home presenting symptoms of diabetic shock. He was shaking, cold to the touch, about to faint, vomiting, and much more. His temperature was only 92 degrees. Sol woke me up (it was about 11:30 pm), and I called a nurse’s hotline. She said to call 911. I gave Sol some pedialite and M & Ms. When the paramedics got here, he looked and felt like a different man. He was doing much better. They tested his sugars and said they were fine, and they did an EKG and said he was ok. Since he wasn’t presenting those symptoms anymore, they said if it came on again that I should just drive him to the hospital. So about 10 minutes later, he started feeling bad again. So we called a friend, Sunshine, to come stay with the sleeping Kai and went to the hospital. They ran a bunch of tests and started a saline iv. It turns out that it was a very bad case of dehydration. After two liters of saline, Sol was feeling much better. All the blood tests and x-rays came back normal, so we came home about 4 am. We’ll take turns sleeping today. Since Sol was in the hospital, he goes first!

I am tired, but know that I’ll have my turn sleeping soon!

Love to you all,

Monica

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I love free WiFi!  I am sitting here in Phoenix on my way to San Jose, Ca.  Yes, that’s correct!  I flew from Long Beach, Ca to Phoenix, Az on my way to San Jose, Ca!  So interesting!  It was the cheapest flight and is taking just as long as it would have to drive there.  The exception is that I get to do email, eat, read and sleep – all of which I wouldn’t be able to (or shouldn’t) do while  driving.  I am on my way to a friend’s wedding in Santa Cruz.  

Just to update you, on Thursday I had my CT scan.  I am SO happy to report that they were finally able to use my port at the hospital.  Sol knows a lady, Alice, who also has a Power Port.  She was the first guinea pig at this hospital, and they messed up big time causing her great pain!  She was the guinea pig again two days before me, and that one went smoothly.  She said she was doing it because she knew I had my scan coming up and she wanted mine to go well.  What a sweetheart!  My scan took a lot longer than usual because they were teaching someone how to access a Power Port.  I didn’t mind, but prayed the whole time that she would do it correctly and that nothing would go wrong.  When they were accessing my port, the teaching nurse kept saying, “On thin patients like her…”  “Because she’s thin…”  I said, “I like how you keep calling me thin!  🙂  She did a great job because if there wasn’t a warm flushing feeling throughout my body, I wouldn’t have even known the injection went into my body!  

I won’t know any results until early next week.  I am going to call on Monday to see if the report is available, if not then I’ll call until it is.  Waiting is difficult, but I have learned that finding out news is always better at the beginning of the week as opposed to right before a weekend.  I get to enjoy the weekend no matter what the scan shows.  I am still praying for great news and expecting it even!  🙂  My God is a God of miracles!  

Speaking of miracles, we need to pray for another one.  My friend’s 18 year-old son, Andrew, has testicular cancer throughout his body.  After fighting it with different drugs and more, he had a clear scan except for one tumor in his abdomen and so they scheduled surgery for 11/12 to remove the tumor.  Over the past week he began throwing up blood and was in and out of emergency.  They did a chest x-ray and found multiple new growths on his lungs and cancelled the surgery.  He has been battling this for a while and now this blow to their family is huge.   At the rate that the cancer is spreading and growing in his body, they feel they have one chance to beat it before time runs out.  Last night they had a huge celebration for Andrew’s 18th birthday party.  His band performed for the first time and there were many people there to celebrate with him.  It was a very positive time, but so hard at the same time.  Lord, we need a miracle!  

My plane is beginning to board, so I will sign off.  I just wanted to touch base before time got away from me again!

Love,

Monica

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 Wow!  Busy, busy, busy is all I can say!  I am so thankful that I have been feeling well enough to spend time traveling and visiting with people I haven’t seen in quite a while. 

Thank you for your prayers as I went up north the day after having chemo.  I didn’t have any side effects while I was there – except for fatigue.  I was able to hang out with my girlfriends, and the house we rented worked out perfectly!  We were able to put all 12 kids to bed and spend time hanging out!  There were 27 of us  all together!  One night was especially moving as we all talked and caught up on life – sharing heart issues and being real with each other.  As we talked, we all reflected on how special this group of friends is and how rare it is to have such a group in our lives.  I miss them already!  Let’s not wait 4 more years to see each other!

Also, while we were in Redding, my parents and sister (with baby) came and took us to the pumpkin patch.  We rode the train, saw pig races, rode in a canoe, and took some silly pictures.  It was a fun time with family.

The trip back from that weekend wasn’t so fun!  We missed our connection in San Francisco due to fog and had to keep Kai entertained at the airport for 6 hours.  We finally caught a flight to Santa Ana where a friend picked us up, but our luggage went to LAX.  We finally got our luggage late on Monday.  On Monday, I went home from work with a fever of 101.  I spent the whole day in bed and woke up the next morning with diarrhea.  It was no fun, but I was glad it didn’t happen over the weekend (or on the plane)!

I continued chemo on Friday, and then drove with the family to Monterey where my sister, Karen, had been all week for work.  She arranged to stay there for a few extra days so we could see her.  She lives in D.C. so we don’t get that chance all that often.  It was a fun weekend, a long drive, but a fun weekend.  We went to the Monterey Bay Aquarium and had a great time watching Kai discover new things.  He loves to explore and learn!  🙂  We dropped Karen off at the airport, and Kai threw a fit becuase he wanted to go on the airplane, too!  Karen actually made it home to D.C. before we made it to L.A.  So not fair!  I was so happy to be able to spend that time with her and to once again be feeling good enough to do it.

My chemo continued this past Friday (Halloween).  We took Kai trick-or-treating and boy do kids pick up the idea of spouting off a phrase when you get candy in return.  He had a great time.  He was dressed up as Batman.  He had a plastic mask that he just would not take off.  He pretty much wore it all day (he even ate dinner with it on).  He was in the parade at school waving at everyone.  Neither of us were there to see him, but our friend took some pictures and said that he just kept waving the whole time trying to see out of his mask.  It would slide down, but instead of pushing it up, he would just tilt his head back trying to see everyone!   The first thing he said to me on Saturday when I went to get him out of bed was, “My Candy?”  He made out like a bandit! 

Last night was our Sunday School ‘s annual Halloween party.  We had a potluck and played games.  It was a lot of fun!  I am so thankful that I have felt as well as I have to participate in all of the fun stuff.  Today, however, I am feeling pretty bad.  I slept in, went to church, and then came home and laid in bed for about 5 hours.  I just have a yucky feeling in my stomach and that chemo taste and texture in my mouth.  It’s a typical feeling after chemo, but sometimes it’s worse than others.

The next thing for me is a CT scan on Thursday (Nov 6th).  I don’t have chemo this week, but the CT scan effects are sometimes worse than the chemo effects.  I’ll be out of commission for the evening – staying close to the restroom!  We are hoping and praying that the scan shows continued shrinkage of the tumors – evidence that the chemo is working.  On the last CT scan, they said that the tumors had all shrunk by half, but that there was one new one showing up.  Our prayer is that this one is also shrinking and not growing.  I won’t have any report until the following week.  I have a doctor’s appointment on Friday (Nov. 14th), but will call earlier in the week (maybe Tuesday) to find out the results. 

Thank you for your faithful prayers and support even when you don’t hear from me!   One other prayer request that I have is that I have my teaching evaluation this Friday.  The Vice-Principal will be coming to observe me teaching a lesson.  I pray that my students are engaged and their behavior is top notch.  Parent conferences were last week, so there were some difficult conversations that will hopefully turn things around for some of those kids!  🙂

Thanks again,

Love,

Monica

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 So far, I’m feeling pretty good.  My new friend Shelley went with me to chemo.  She is a teacher, too, so we spent time counting ballots and grading papers!  Today actually went very quickly.  I was done in three hours.  Then I came home, finished the movie I had started and did laundry for our trip.  I guess I’m feeling ok.  I am excited about the trip, so that keeps me going – doing what I need to do.

I am so excited and a little nervous!  We are leaving in the morning for Redding, CA to see my friends and family.  It is my 10 year from college and my friends and I are hanging out.  We haven’t seen each other in a little over 4 years or met most of the kids who’ve joined the XV clan.  I am nervous because I don’t know how I’ll be feeling.  The side-effects tend to hit the morning after, and that’s when we’ll be on the plane!  

I realize that a while has gone by since I’ve posted pictures, so I am going to attach a few pictures of our recent activities: 

This is us at the Fresno v. Ucla game!  Fresno won and it was a blazing 96 degrees!  Yea and Yuk!  Notice the sea of red behind us!  🙂

These pictures are of Kai cooking and learning that the pan can get hot!  He burnt his finger!  🙁

This is us at the Hollywood Bowl.

This is Kai Cousin and Athailai Cousin!  Kai LOVED having her here!  He wouldn’t leave her alone!

And my favorite picture from our trip to the zoo on Saturday is this one:

After looking at the Flamingos, Kai wanted to get down.  he said, “look Mommy…I Kai-mingo!  He thought of it all on his own.   I know, I know he’s a genius.  I was so proud of him playing with language already.  A little joke from my little guy!  🙂  

There are more photos in the photo section of the site, if you’d like to check them out! 

Right now I am doing well, but you can pray for the plane trip.  The side effects from Chemo tend to hit hardest, if they hit at all, the morning after!  I am glad to have an aisle seat just in case!  🙂  Thank you and I’ll be posting when I get back about the fun times we had up in Redding! 

Oh one last thing…We put an offer on a house and should hear by (now they’re saying) Monday.  We’ll keep you updated.

Thanks, the morning is going to come early, so off to bed we go!  Hope you enjoy the pictures!

Love, 

Monica 

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Wow!  Two weeks have flown by.  I keep saying that I need to do an update, but it never happens.  Right now I am feeling so overwhelmed – it’s overwhelming!  (Seriously, it has brought me to tears on more than one occasion.) So now it is 11:00 on Thursday night, and I’m going to give you a long bulleted list update.

• Fresno State Beat UCLA, and we were there!  🙂  It was a blazing 98+ degrees and kick off was at 12:30!  Hot, Hot, Hot!  (Thanks again, Shelley! Kai had a great time!)
• Back-to-school night was 9/30.  I only had 12 of 35 parents come.  🙁
• It was a year ago October 2nd that I found out I had cancer.  Tough day.
• Chemo #9 went well (Melissa Torres went with me) with not too many side effects.
• Saturday night I even felt well enough to go on a dinner and movie date with Sol.
• My toes are still experiencing numbness from the Taxol, but it hasn’t gotten worse.
• Went without a T.V. all week…was kind of good for all of us.
• Kai has been doing GREAT going to daycare this week and has just been a joy to be around!  He’s so stinking adorable.  He loves to tell stories!  🙂 
• My students have been terrible!  I need help figuring out how to get them back!
• Renters in Fresno moved out on Monday, and we found out that they had not been taking care of the house while living there.  Things are broken and the place is filthy!  How disappointing!  Let’s just say, they will not be getting their deposit back!
• Phone has been ringing off the hook with potential new renters.  🙂
• Sol’s folks have been awesome, putting up for rent signs, taking calls, setting up showings, giving keys to people so that they can clean it…and a ton more things!  THANK YOU!!!  We are so grateful!
• Grades are due tomorrow.  I just finished correcting papers and will finish the writing of the grades tomorrow. 
• I’ve had a cold for three weeks, and it has drained any energy I had left after chemo treatments!
• I have had three subs in the last 5 workdays.  It is harder to be out and prepare for a sub than to just be there! 
• I purchased airline tickets to go see my friends and family at the Simpson University Homecoming weekend.  It’s my 10 year reunion from college!  I am so excited to see them all!
• My older sister, Karen, is coming out to California for work and we made plans to hook up while she’s in Monterey!  Hey, it’s not that close, but it’s a heck of a lot closer than Washington, D.C.!  🙂
• NO CHEMO THIS WEEK!!! 
• Sol leaves tomorrow for Men’s Retreat…just me and Kai for the weekend! 

I guess that’s about it.  I may have forgotten some things in my attempt to write fast so I can go to sleep.  I am sorry that it took me so long to update.  

Please pray for healing from this cold.  I am hoping that since I don’t have chemo tomorrow, my body will finally be able to fight it off. 

Thanks.

Blessings,

Monica

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