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Today was a really painful day.  I don’t know what brings it on, but for about two hours I couldn’t sit, lay down, stand up or anything. I thought someone was going to call the police because I was screaming so loudly from the pain – if you can imagine that.  I was home by myself and didn’t know what to do. I don’t know why I didn’t want to take the pain medication.  I guess I hate medication that much.  “It’ll go away” I kept telling myself.  Well it did go away, but it came back and then I took the pain meds.  Why didn’t I take them earlier – I will next time! 

We also heard about the bed.  After calling to cancel our order, we finally heard from the salesman. The mattress should be here tomorrow evening!  I don’t know whether to get excited about that or not.  I’ve heard it before.  I’ll let you know!  🙂

Anyway, I just wanted to let you all know how today went, and to ask for prayer for pain.  I try to be so strong, thinking I can just deal with it, but I need to recognize that sometimes I can’t.  

Thank you,

Monica

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I was a bit frustrated by the doctor’s appointment this morning.  I was told that there was really nothing that they could do to help with the fevers and cough.  I just have to manage and fight.  He said that the cough could be irritation from the tumors making me cough – not too much I can do about that, eh?  I don’t have any fluid in my lungs, so that is good, but this cough is keeping us up at night and wearing me down, down, down.

My blood tests showed that I am a little anemic, so I will be having shots to boost my red blood cells weekly beginning next week.  Hopefully it will give me more energy.  I’ve never had one of these shots, so I am a little afraid.  I’m set to have them for five weeks and then check it again.  Before the five weeks is up, I’ll also be having a CT scan.  It is not set up yet, but will be soon – I’ll let you know!

I also have not had much of an appetite – lost 7 pounds – so the doctor prescribed Megestrol Acetate to stimulate my appetite.  I hope that by eating more, I’ll have more energy.  It is supposed to be Lemon-Lime flavor, so hopefully it’ll go down smoothly.  We’ll find out tomorrow!

Please pray for rest and sleep.  Sol and I both need sleep.  Kai is doing awesome!  He continues to go in the potty and sleep through the night!  Martha (Sol’s step-mom) is coming tomorrow.  She said she woke up this morning and just needed to be here.  So here she comes.

I’m praying I wake up tomorrow with NO cough!!!  It can happen!

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This morning, after two weeks of excruciating pain, I rolled over…no pain!  I sat up…no pain!  I stood up…no pain!  I was in shock!  The pain had been so incapacitating, that for it to be gone overnight is nothing short of a miracle.  Thank you to all of you who were on your knees praying for me.  Today has truly been a miraculous day!  

I do have another prayer request though.  Ever since beginning to take Nexavar, I have had a fever between 102 and 103.6 degrees for a few hours each day.  The doctor said not to worry too much about it because I don’t have any other symptoms, and that my body is probably just trying to get used to the medication.  He said take Tylenol and keep and eye on it.  Today was the longest and highest fever I’ve had.  Maybe because I haven’t been taking the Tylenol with Codine – I don’t know just a thought.

Kai has become a pro-tricycle rider!  He’s going places!  Seriously though, he’s really fast!  He loves to ride his bike everywhere!  It’s a great way to get out some of his boyish energy!  🙂  

I am beginning to feel the familiar effects of the chemo – dry mouth, voice changes, and chemo belly.  Yuck!  I am hoping to figure out what this medicine does to me, so that I can learn to deal with it.

Thanks so much for your prayers!

Love,

Monica

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On Wednesday, I didn’t have to wait too long for the medicine to arrive.  About 10:30, it was here, and I was taking it.  It’s amazing how different you can feel from one day to the next when this little (and I mean little) bottle arrives potentially holding the miracle you’ve been waiting so long for!!!  Suddenly there’s a spring in your step, the cloud overhead isn’t raining, and a smile crosses your face where there once was an angry frown!  

Yesterday I overdid it.  By the time 3:00 came around I was in so much pain, I couldn’t even lay down without sobbing.  Sunshine came over and watched Kai and Madison until Sol came home, then Catt came over and took care of Kai in the evening while Sol was at Bible Study.  He had already missed last week because of me, so I insisted he go!  These two ladies made me stay in bed and rest.  It was just what I needed, but so often can’t bring myself to do.  There’s too much to do – you know? 

Today I decided that I wasn’t going to go anywhere.  I got up with the boys – Kai wanted Mommy – made breakfast and lunch for him, and hung out for a few minutes before they took off for the day.  I love the morning with Kai.  He’s so cute.  Over the past three weeks we’ve been watching an Amaryllis grow.  We planted it, watered it, and checked on it every day!  It is Kai’s favorite thing to do in the morning – “Check on my fwowers.”  Anyway, this morning I took this picture:

The flower is almost as tall as he is!  We are trying to grow a strawberry plant as well, but that’s not doing anything yet!  This was so much fun and got him excited about gardening.  It’s a great project because you get instant results…every day it was a little bit taller!  🙂  (Yes, he’s holding an umbrella…it is supposed to rain today and he was all about using his new Mickey Mouse umbrella! – it rains a lot in our house every other day of the week!)

An update on the house – we backed out of escrow.  After getting the inspection, there was going to be way more work than we had anticipated and budgeted for.  So back to the house hunting and making offers.  The right house will come along, and everything will go smoothly in time – in God’s time!  

Until next time, hopeful in Whittier,

Monica

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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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I’m going to try to keep this brief because it’s almost 2 am.  As you know, Monica has begun feeling pain in her right torso area from the back to the front.  She’s been a trooper all week (you know how she has a high tolerance for pain), but it got really bad tonight.  I called her oncologist because I had never seen her like that before.  He wanted to make sure it wasn’t a rare side effect from the Avastin, so he recommended I take her to the ER just in case.

Long story short, they didn’t find anything like the bowel perforation side effect that her oncologist was worried about, so in a sense that’s good news.  The ER doc thinks that it is a multifaceted issue where the tumors are growing in the liver making it tender and constipation is putting pressure on it.  The bad news is that they sent us home while she continues to have intense pain.  They prescribed her pain meds, an enema, and stool softeners.   I’m going to take the day off from work tomorrow to take care of her, because the pain limits her mobility.  Good night.  Thanks for all your prayers (especially for HMO approval; we’re still waiting and according to the CT scan she got tonight, the tumors are growing).

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On Monday, I started feeling pain in my right side.  I called the doctor, and he confirmed that it was most likely my liver hitting my ribs.  I am so worried that in the 3 weeks that I haven’t had any treatments, the tumors are growing out of control.  They have grown so fast in the past, so I know how aggressive they are.  I began taking codine to manage the pain a little bit.  Last night, I couldn’t even lay down.  I slept in the recliner, and at 2:00 am, once the codine kicked in, I slept well.  

The authorization has been turned in for the Nexavar, and now we wait for the HMO to get back to us.  We looked into getting it right now – not waiting for authorization- but it’s $6,000 a month for 120 pills.  Hopefully authorization will come through today or tomorrow.  Please pray that authorization comes through quickly, and we can start treatment this week.  I dread every day I’m not being treated.  In looking on the internet for clinical trials, I was once again faced with the statistics of survival.  I have already outlived half of patients diagnosed with angiosarcoma at 18 months.  The five year survival rate is only about 15%.  That starts the lump in my throat and the tears in my eyes.  I am by no means giving up, I’ve too much to fight for!  It just shows me how hard I need to fight!

Sol has been sleeping better, and Kai is having a blast in Fresno with his grandparents, aunts, uncles, cousins and new friends.  We were able to talk to him on the webcam last night.  He was laughing and having a blast seeing himself on the computer.  He even kissed the monitor to say goodbye!  Sometimes I just need a Kai hug!  How we miss him! However, I slept until 9:30 this morning!  That’s not going to happen when he’s back home!  So I’ll enjoy this time, but look forward to holding him in my arms again.  We know he’s having a great time with people who love him.  I guess today he was going with Tio Rico to see the dinosaurs at the Fresno MET.  Hopefully that will go well.  Sometimes he thinks dinosaurs are the coolest things, and other times he thinks they’re too scary.  Which one will it be today?  Good Luck, Rico!

I have a wonderful story to tell of God’s provision.  I recently reconnected with a friend from high school.  She married a guy a year ahead of us in school who’s high school friend is a pathologist who works for Bayer Pharmaceuticals and Bayer makes Nexavar!  How’s that for timing?  He just sent me a bunch of information about the drug.  God is amazing, and His timing is perfect.  

Thank you for all of your prayers and encouragement.  There is going to be an opportunity to help us financially.  Sol’s cousin’s girlfriend’s parents (did you get the connection?) have a t-shirt company and are willing to donate all the proceeds of a t-shirt sale to us.  We just have to design a t-shirt to sell.  So all of you creative folks start thinking and designing!  I hope to have more details soon, which I’ll pass onto you!

Much Love,

Monica

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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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Well on Wednesday I had my doctor’s appointment and was scheduled to have chemo as well.  After talking to the doctor about the CT scan results, chemo was postponed until further information was sought.  The doctor suggested a line of treatment – Ifosfamide with Avastin, but Sol and I came prepared with lists of clinical trials in the area.  In talking with the doctor, he agreed that we should check into these in case some of them would exclude me if I began this third type of chemo.  He said that sometimes they might want me to try this treatment before allowing me to do the trial.  So he said he’d call Dr. Chow, a doctor at City of Hope in charge of many of the sarcoma trials.

I went home, after lunch and shopping with a friend, and called City of Hope.  We were thinking that we would just set up and pay for a consultation, but I was informed that it would be over $1000!  They asked me what kind of insurance I had and what group I belonged to.  I told her and she said to call my primary doctor and try to get authorization because they did contract with my insurance.  So I called and I believe an authorization request was sent yesterday to go to City of Hope for a consult.  We’ll see!  

In the meantime, I got a call today from the nurse practioner at the doctor’s office.  He told me that Dr. Chow – lead researcher on the sarcoma trials at City of Hope – called and talked to my doctor today.  He said that Dr. Chow said that many of the trials exclude angiosarcoma from participating in the trials.  I began to cry.  He also mentioned that the trial going on that include angiosarcoma are taking place in France and the Netherlands.  He said that the doctors talked at length about treatment options and trials.  I was expecting a phone call from my doctor tonight, but have not heard from him, and it’s already 9:30.  I guess I’ll have to wait until tomorrow.  If I don’t hear by 10:00 am, I’m calling the office.  I don’t want to have to wait the weekend.  I’m ready to board a plane and eat crepes for a while or smell the tulips!

I feel quite depressed about the whole thing.  I know I need to keep hope, but it’s so hard.  I feel like I’m at the end of the road in my options.  I know I need to live in today and not tomorrow.  Today I feel fine, today my doctor is looking for something to help me, today my husband loves me, today my son is a comedic gem, and today there are MANY fervently praying for me!  I know that I can only live life one day at a time, so that’s what I’m doing.  I just want to know what’s next.  Living in this uncertainty brings so much fear.   

That’s all I know.  So I sit here and wait.  I didn’t want to post because I don’t know much about what’s next, but look at the novel I’m finishing!  

Thank you for your prayers.  I’ll update as soon as I have more information.  

In need of peace,

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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