SolandMonica.com

I really need your prayer.  I have been feeling really down the past few days as I fight a cough that deprives me (and Sol) of sleep.  I have not had any energy, and it is really starting to bring me down.  I have been fighting one thing or another – maybe not even related to my cancer – everyday for the past three weeks.  I have seen God take away pain in miraculous ways but struggle as the battle to just feel better continues on a daily basis!  I am not eating much – Kai eats more than me these days.  I just don’t have an appetite, and so I don’t have any energy.  I don’t have the strength to pick up Kai or the energy to play with him and that breaks my heart!  I want to be a great mom to him, but find myself falling short (of my own expectations) as all I want to do is curl up in bed.  He is so great and cuddles with me.  Sol always asks me, “You ok, Love?” Kai picked up on it and the other day put his hand on my knee and asked, “You ok, Love?”  It was so sweet.  The other really sweet thing he did was go to the store with Sol to get me some Tylenol.  When they got home, he ran through the door so excited.  He couldn’t even spit out the words…”Mom, Mom.  I found you some medicine it’s gonna make you all better.”  He was all smiles!  I want to be all better so badly, if for nothing else, for that precious little child!  Sol, as you all know, is just an amazing blessing in my life.  He has really been taking care of me these past few weeks and doing everything to take care of Kai.  I’m glad he feels good taking care of me, but I feel so guilty – I know I shouldn’t, but I do.  

Anyway, I just wanted to share with you the tough time I am finding myself in right now and ask for your prayers.  I just want all this other stuff to be over and have the energy to fight this beast.  Thank you for continuing to pray for me and encourage me as I walk the road ahead.  

Monica

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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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I woke up this morning excited to finally get something going in terms of treatment.  My side has been aching, I’ve been on pain meds for a week, and I want to see those tumors gone!  My drugs were being delivered today – I was happy.  At about 9:15, I got a phone call from Florida.  The lady on the phone was calling to let me know that for some reason my prescription wasn’t sent out yesterday, so I wouldn’t be getting it until tomorrow.  I started crying.  I was so angry.  How does that happen…and why does it have to happen to me?  I even called yesterday to make sure they were open and would be sending it out!!!  I asked if they could same day deliver it to me; she said no because they’re in Florida.  (I’m sure there is a way!)

Anyway, I sit here now, frustrated and upset that I have to wait one more day.  It has been over 4 weeks since my last treatment!  This cancer is so aggressive, that I know the tumors are growing as we wait!!!  What a frustrating beginning to my day!  

Please pray that the drugs get here early tomorrow and that I can move past this oversight and not be angry about it.  It’s not healthy to carry that with me.  

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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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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