SolandMonica.com

Sorry I didn’t get a chance to post as much today as I have recently.  Today was an incredibly busy day; full of visitors.  As I mentioned in the previous post, Monica didn’t do as well today as she did yesterday.  However, she did finally go to the restroom, so that’s a big praise.  She’s still got a ways to go though, but at least she’s heading in the right direction.

Her Mother’s Day wish for this year (before all this happened) was to go to one of those places where you can pick an oyster and make your own jewelry out of the pearl.  If she has the strength, we may try to do that still tomorrow.  We’ll see.  We don’t want her to push herself too much.  She needs to have the energy she can for Monday’s appointment with the sarcoma specialist, where she should be starting the trial chemo. 

In order to try and get her to rest, we are asking for no visitors tomorrow.  It’s Mother’s Day anyways, so everyone will probably be with their families.  If you would like to reach out to Monica tomorrow, feel free to post on the Encouragement Guest Book and she’ll read them.  The posts are a very good source of strength and encouragement for her.

Have a wonderful Mother’s Day.

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Well, yesterday was a pretty good day where Monica’s pain seemed manage and her alertness had grown.  Today is another story.  She had another very restless night in a very literal sense.  She got very little rest due to the discomfort and pain the constipation is adding.  That’s on top of the pain she’s already trying to manage.  She’s pretty groggy and uncomfortable today, and her swelling continues to increase.

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We were very concerned about Monica’s liver enzyme levels excluding her from participating in a clinical trial for a new drug, since the day before they were too high.  Thanks to God and to all your prayers, the results came back that her enzyme levels are ok and she is eligible!  Monica (and all of us) are very excited and grateful.  It’s a new glimmer of hope in the midst of a very discouraging time. 

Today was a pretty good day, though.  One of Monica’s pain meds is a patch on her arm that takes 72 hours to reach its peak level.  After that, replacement patches should maintain that peak level.  Anyways, today was the 72 hour peak, and it really seemed to make a difference.  She was more coherent today and didn’t have to keep asking for more of the pill meds which make her groggier and hallucinate.  We also really enjoyed lunch today.  Heather and Keri conspired (in a good way) to bring us pizza from our favorite place called Me’n’Ed’s.  Another friend from Monica’s Bible study also brought a platter full of home made sandwhiches, so we ate and ate.  All the food was delicious.  Monica’s sisters and sunshine also decided to take her to get her hair washed and styled.  Monica really appreciated it.

There are a couple of other challenges to pray for.  The pain meds have made Monica very “plugged up”.  She hasn’t had a bowel movement in over a week!  She is very bloated and uncomfortable with pressure, so we really need to pray for that.  We would also appreciate prayer for Kai.  It’s probably just his age, but he is starting to get very whiny and clingy.  He gets a bit sad sometimes too.  His teachers have told us that he tells them he needs to go see his mom in the hospital because she is getting “big shots”.  Pray for his little heart, that he would be filled with love from everyone around him and that he would feel safe.  Finally, pray for a good night sleep for Monica.  I finally had a good night sleep last night, but Monica still wakes up constantly.

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I tried to write this post for an hour last night, but I didn’t quite know what to write.  I’ve rewritten this post at least five times already. 

Monica is not doing well.  She still has incredible pain, but the pain meds do a good job of masking it for small pockets of time where she seems happy.  She doesn’t sleep for more than about thirty minutes at a time, but she thinks it has been hours.  The drugs cause her to lose focus so quickly that any conversation of more than about 1 or 2 minutes drifts to something random.  At least she has a good sense of humor about it.  The other day she was scolding one of her students… it’s almost like she’s halucinating.  When we asked her who “Alex” was, she realized what she had just said and started laughing.  Sometimes it’s funny, sometimes it’s sad.

She got another blood test yesterday, and we have to call the sarcoma specialist’s office today to see if the results make her eligible for the clinical trial.  In the meantime, her breathing has become really shallow and she always feels like she’s short of breath.  We’re going to find out if she needs an oxygen tank.  The big event for the day will be to give her a shower.  Hopefully that will help her feel more comfortable.  

Thanks to our friend Heather.  Monica hasn’t been eating much, but she has been craving special things.  One of those things is pizza from our favorite pizza place:  Me’n’Ed’s.  Me’n’Ed’s is a Fresno restaurant, but a couple of them have opened up in Orange county somewhere.  Heather called them and explained Monica’s story, and they have decided to send a pizza and a calzone all the way to Whittier!

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Thanks to everyone for their patience.  Monica definitely wants to see visitors, but she is in and out of sleep so we will post on Twitter when we are taking visitors (If you are not signed up for Twitter through your cell phone, you can see all the Twitter posts on this site on the right hand side of the screen).  It could be at anytime.  It just depends on how/what she’s doing at the moment.  For now she has gone back to bed so currently we are not taking visitors.  I promise I will post every time she says she is awake enough to take visitors.

A small word of warning: if the volume of visitors is anything like it was at the hospital, it could get very crowded very quickly in our little apartment.  We currently have Monica’s immediate and extended family here already, so be prepared to stand.  If it is crowded when you come, a shorter visit is appreciated.  If it’s not crowded, feel free to sit down and share your encouragement and support with Monica and the family.

Our address is 6023 Greenleaf Ave Apt. B 90601.  You can click on the address and it will take you to a map.

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Well, we’re home.  Monica had a really long, taxing day today, but I am so proud of her.  The doctors may not be very optomistic, but she is not giving up!  She used all the strength she had to climb stairs, bump along on the freeways, get poked and prodded more; and all this after very little sleep last night.  Her feet and legs are very swollen from all the IV fluids, so it was even more uncomfortable.  Monica’s mom stayed with her last night and confirmed that she was up every 30 to 45 minutes.  I wasn’t exaggerating.  For some reason she wakes up at night feeling like she needs to go to the restroom, though she can’t go (if we hadn’t already mentioned, to top it off Monica developed a urinary tract infection in the hospital!)   🙁   She came home and laid on her wonderful bed and propped her feet up.  She was asleep in about 30 seconds.  I hope she gets some decent rest.

Coming home was full of mixed emotions.  It’s nice to be home, but  I’m concerned about being able to manage Monica’s pain adequately.  It’s also “Grand Central Station” here with all the family and Kai being in one place.  We’re getting a hotel room for a few people so that should help, but it’s still crowded and messy so I just need to take a deep breath and focus on what’s important. 

The sarcoma specialist’s office wants to enroll her in a clinical trial for a new drug, so there’s a glimmer of hope.  She has to get a series of tests right away though, because she could be excluded if the levels of enzymes in her liver are too high (which they are right now; pray that they will go down by the time she gets the next blood test tomorrow).  If she is excluded from the trial drug, they say there are still a few chemos she can try, but that in her present condition it could be very hard on her.  The cancer (sarcoma) has spread in her liver, lungs, spine, and skin.  The largest tumor is in her liver and is now 22cm (almost 9 inches).  This is the tumor that is causing the most pain.  Imagine trying to shove a football in your abdomen…  The tumors in her spine are very painful as well.

There is so much to write that I’m having trouble keeping all my thoughts linear.  I’ll write more soon. 

God bless.

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The past few days have been a whirlwind.  Sometimes I wonder if I’m dreaming.

I can’t post too much detail because I want to make it back to the hospital as soon as I can.  I didn’t have the strength to stay with Monica last night, so I stayed at my cousin’s house for a decent rest.  Monica gets up about every 45 minutes to go to the restroom or take pain meds or talk to a docotor, etc. and after several nights of that, I felt like I wouldn’t be her best support person; I was afraid she might need something and upon calling me I would just sleep through it.  A changing of the guards was in her best interest even though it hurts me to not have been there for her.  Her mom stayed instead, so I know she was in good hands.  Even though I was tired, I had a hard time falling alseep and I still feel like I got hit by a truck this morning.

The doctor’s switched her pain meds yesterday from morphine to dilaudid, and she seems to be doing better with the dilaudid.  she is a little more coherent, and her pain seems to be managed better.  She also has a fentanyl patch which started at 25 mcg and has been raised to 100 mcg in small increments because they were having a hard time managing the pain for a while.  The doctor at the hospital told me that he thinks she has been in a lot more pain than she was telling us, because the kind of pain that comes from her condition is intense.  He thinks she was trying to be brave for our sake.

Monica has definitively decided to keep on fighting, so please keep praying for healing and strength.  She doesn’t want to give up, so we are not going to give up on her either.

I saw how many people signed up to follow her on Twitter recently, so I’ll try to post as many updates as I can.  Once I leave my cousin’s house for the hospital, I still won’t have internet access though.

One more thing… thank you to everyone who has come to visit.  I’m sorry I haven’t been able to answer everyone’s questions or speak to everyone.  Like I said, it’s been a whirlwind.  But we really do appreciate the support.  Monica and I talked last night about how amazing our support network has been.  You guys all really do make a difference.  Some of you deserve medals for everything you’ve done.  If I tried to list everyone, I would be here for another hour or more.

Please keep up the prayers and the hope.

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I’m home for a quick shower and update.  The doctor’s goal for Monica was to find the right dose of pain meds that would manage the pain and still allow her to be functional.  Last night, however, her pain escalated significantly in her lower back where there are new tumors in her spine.  The pain that brought her into the ER at the site of the liver was still significant as well, so after a long, painful and sleepness night (I thanked the nurse for her patience) they gave her Dilaudid which is a lot stronger than what she was getting.  Unfortunately, this makes her even more groggy.  The sleepness night doesn’t help either.

I’m not sure what the plan will be at this point.  We have to wait and see what the doctor wants to do next. 

Visitors are fine for a short stay.  Longer stays tend to accumulate more people and it gets loud and crowded quickly.  Monica may not be all that responsive though, so if you coordinate to come together with a couple people it might be better than waking her up multiple times.  I think she appreciates seeing people though.

Thanks again to everyone for their continued support and prayers.  We love you more than you know, and you’ve all given Monica more strength than she could have without you.

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This is Sol.  I ran home quickly to get a few things so I’ll make this post short.  Monica has been in the hospital with a lot of pain for the past two nights.  We’ll be there tonight too.  The tumor in her liver has grown to 22 cm (almost 9in).  I don’t have internet access in the hospital, but I’ll be posting updates through Twitter which you can read on the front page of the site here to the right.

If you are a praying person, please pray now.  The doctors said we need to prepare for the worst.  Monica’s family is coming in from Northern California and Washingon DC.

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Of course the waiting is hard, but finding out that chemo isn’t working again is harder!  According the report, most of the tumors have grown.  The cancer is in the lungs, liver and spine.  I have been having a lot of pain recently in specific areas of my abdomen and back, and those places were the most notable in the report.  It wasn’t just me sleeping wrong – of course not with my new bed and all!  Anyway, we will not be continuing that chemo and I have an appointment scheduled for May 5th at USC Norris Cancer Hospital with Dr. Chowla.  He is supposed to be an expert on sarcomas.  Hopefully he’ll see something with fresh eyes and take a leap with something that will work.

So the pain is getting worse.  I have been taking a time released morphine pill twice a day, now since there is pain inbetween, I am taking 6 codeine pills a day as well.  I still function, but am tired all the time.  My red blood count is still way too low, but all of the cultures and such are coming back negative for anything.  The doctors say it’s related to chronic disease – meaning it’s because of my tumors.  I also have been having fevers every night and have been soaking my bed with night sweats.  It’s crazy!  It’s like someone has dumped a glass of water onto my pillow.  It’s pretty disgusting actually!  All supposedly tumor related!  

Please keep us in your prayers as we make decisions about treatment and everything else.  Pray that my pain would go away.  Pray that I’d be able to eat more at meals.  Pray for Kai as he’s beginning to understand that there is something wrong with Mommy.  Pray for Sol – he’s really having a tough time; he can’t fix it!  Thank you for your constant support in prayer!  

Monica

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