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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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So my dermatology appointment went pretty quickly ending with a punch biopsy and the waiting game.  He said it would take about 7-10 days to find out the results.  He said he put a rush on it saying that patient’s treatment depends on the results.  So hopefully we’ll hear back sooner than 7-10 days.  I was so thankful to have Sunshine there with me as I was getting the biopsy.  She changed her schedule at the last minute so that I didn’t go alone.  It was a blessing.

After the appointment, I received a phone call from my doctor’s office saying that I would need another transfusion.  Just what I didn’t want to hear.  I was in a restaurant and didn’t want to cry.  When I don’t want to cry, the muscles in my abdomen tighten up and I am in a lot of pain.  That happened to me at that point.  I wanted to scream, and for some reason I couldn’t relax to stop the pain.  Sunshine was with me, she was very calm, and I finally relaxed.  

Heather went with me to chemo today.  We had planned on going to lunch, but spent most of that time before chemo at the hospital getting ready for the transfusion tomorrow.  We did go to lunch at this little Mexican place…my new favorite… and just decided that if I was late to chemo, so be it!  😉  We were only about 20 minutes late.  Yummy Fish Tacos!!!

At the doctor’s office, it is routine for them to check your vitals before chemo and sometimes they won’t treat you if things aren’t at the right levels.  My blood pressure – low, but that’s been pretty normal since starting chemo.  Then they took my temperature.  It was 102.2 degrees.  Ummmm, to me it would seem that’s a little too high.  I’ve been having fevers, but I don’t seem to have all the symptoms that usually come along with the fevers.  So I didn’t look sick but had a pretty high fever.  I think they normally wouldn’t do chemo, but my doctor said go ahead, so we did.  They also didn’t give me the anti-nausea injection that knocks me out, so I wasn’t totally out of it which was nice.  When I was done, my fever was down to a low 101.9.  Not down too much at all, eh?   We decided to leave the port connected so that they don’t have to do it tomorrow at “My Favorite” hospital.  

I’ll write more after tomorrow.  

Some fun things we’ve done in the past week are go to a 90th birthday party (cowboy theme), Sol got his latest CD mastered (really a big deal), and we went whale watching (didn’t see anything worth writing home about).  We’ve been talking about doing things we’ve never done but always wanted to do.  Whale watching was on my list!  (I’ll post some fun pictures of these things soon)

Today was really busy.  Tomorrow will be full, but I won’t be going anywhere except the hospital.  There is no one who can stay with me the whole day, so people are coming in shifts starting at 7:45 when Gwynne will pick me up and take me there.  🙂  I have such great friends around me.  

Well, I need to get to bed, it’s going to be an early morning tomorrow.  Sol has to be at work at 6:00 and I have to h=leave for the hospital at 7:45 – early for me these days!  🙂  

Love you,

Monica

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I have two minutes before I have to leave for the dermatologist.  Yes, I am going to see a skin doctor.  Since taking Nexavar, spots have been popping up on my chest where the cancer originally was.  The Oncologist says, “Let’s watch it”, I say, “Let’s figure out what it is”.  It looks like small blood vessels protruding out of the skin.  I just want someone trained in skin things to look at it.  I’ll let you know.

I am also scared that they are going to tell me I need another transfusion.  I don’t want that.  I am scared about finding out the results of the tests they ran last week.  

Please pray for peace.

Got to go!

Monica

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Last Tuesday, I was sitting on the couch before chemo when the doctor’s office called and told me I needed a transfusion, so when the phone rang yesterday morning, my heart skipped a beat.  I was relieved to hear that I wasn’t being scheduled for another transfusion, but for some reason the transfusions, the shots, and the extra iron pills aren’t raising my red blood count to normal levels.  I don’t know how much these things are supposed to raise the level, but I do know that the normal range is 11-14, and I was a 7 before the transfusion last week and only 8.4 this week.  They told me that they’d be drawing more blood before chemo to run some other tests on it to see what else might be keeping my levels from raising.  

This was one of the quickest treatments ever.  It took just under an hour, but still knocked me out!  I slept the majority of the afternoon and evening, which affected my sleeping last night.   I was up every 2 hours just laying there awake… (Sol been having a tough time sleeping last few night as well).

Other than that, things here are going pretty well.  We had a wonderful Easter with family.  Kai began getting baskets on Thursday and received one every day up to Easter.  He LOVED it!  Now there is way too much candy around our house.  I have been throwing it away – yes, tossing it.  Boy does it take self-will not to eat it or stash it away for a rainy day (honestly, I’ve been eating it so it needs to go!!!).  Here are a few pictures from decorating eggs and Easter Sunday.

Decorating eggs with Watercolor – you could rinse the egg off and decorate it again and again!!!  🙂

The Loot!!!

The Egg Hunters

A Lady Bug Friend.  Kai loved having the ladybug crawl all over his arm.

We love you all and hope this finds you well.  Happy Easter – Christ has Risen – Death has no Victory!  Alleluia!!!

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I was sitting at home on Tuesday looking forward to a relaxing lunch with my friend Traci before chemo.  As I was sitting there, I received a phone call that I needed a transfusion, and then they asked me if I wanted to do it all in one day.  I said, “Definitely no!”  Well that relaxing lunch turned into running around the hospital getting things ready for the transfusion the following day.  We ate at Del Taco…nice and relaxing, and then headed off to chemo.

Chemo went smoothly.  Once again, it knocked me out.  I slept through the whole thing, and then slept until dinner after coming home.  They were able to leave the port connected, so that I wouldn’t have to be stuck by the nurses at the hospital where they’re still learning how to do that.  

My mother-in-law, Oralia, came last night; I am glad that she was going to be here for the unexpected transfusion.  She also took Kai all around the festival in uptown.  He jumped in the Pirate Jumper, aka Yo Ho Pirates, he held and chased a squealing pig, and he rode the ponies.  That’s what Nanas are for right!  He is so spoiled!!!  He even came home eating Kettle Corn!  What an outing!  🙂  

This morning I started to get a little bit nervous because they couldn’t get blood from the port.  Finally, it worked.  Whew!  I slept a lot today.  My red blood count was the lowest it’s been at 7.0!  I guess that explains a lot of the sleeping I’ve been doing.  It continued as I slept a lot of my day away.  Once they got it going things ran smoothly; even removing the port went well this time, after I coached them through it.  🙂  

So tonight I am doing well.  I don’t know that I feel more energy yet from the transfusion, but hopefully tomorrow I will.  

Thank you for all of your prayers and support over these past two days.  They really have been tough ones.  Two more chemos and then a CT scan.  Please start praying over those results as those determine the path of treatment.  I’m praying for a clear scan…NOTHING there, nothing there, nothing there…

Love to you all,

Monica

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I just received a phone call saying that I will be having a blood transfusion.  I guess that means my count is still low and that it maybe even went down a bit from last week.  They wanted me to do it right after chemo today, but that’s just too much!  So tomorrow morning around 8:30 I will report to the Short Stay floor at my “favorite” hospital for my second transfusion – two more units.  Please pray that the experience will be much better than last time.  I am scared to have them access my port at all, so I am going to see if I can stop by my chemo office and have them stick me instead.  Thank you for your prayers.  If I feel up to it and am not knocked out tonight, I’ll let you know how Navelbine #4 went.

 Thank you to all of you who donate blood – you are saving lives and helping people like me get and feel better.

Much Love,

Monica

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Washington D.C. was a lot of fun.  Spending time with my sister and her husband was a real treat.  We were busy every single day.  I don’t think we went to bed before midnight while we were there, however, we did sleep until 10…at least I did!  We have a ton of pictures, and I have included some below and in an album, but there will be more coming as soon as I can look through the million pictures we took of the Cherry Blossoms.  They were gorgeous!  I’ll write more tomorrow, but I just wanted you to know that we had a great time.  Thanks for the prayers, and thank you Karen for making sure we had a wheelchair!  I wouldn’t have made it through the week without it!  🙂

While I was in D.C. (Actually, Alexandria, VA) Sol survived home alone with Kai!  He’s an awesome father!  He took Kai to Disneyland on Sunday and had a great (tiring) time.  He said to say thank you to all who brought meals; you made it that much easier on him.  So, thanks for feeding my boys while I was gone!

Below are some of the pictures from the trip…

Us at The White House..Hello, Obamas

Me in the blossoms

Sisters in the Cherry Blossoms

Me and my good pal FDR…Wheelchair Buddies

One of the 3,000 Cherry Trees planted around the basin…friendship gifts from Japan

Goodnight Friends and Family…It’s 9:30, and I’m going to bed!!!  🙂  Yay!

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