SolandMonica.com

I’m not sure what it was the other day, but I guess I just woke up with the blues.  I’ve been feeling much better since yesterday.  Thank you to those of you who sent words of encouragement and prayer. 

I thought Kai had been doing much better lately as I’ve noted before, but the last two days has been a struggle for him.  He keeps saying that he thinks I am going to die, and he’s been pretty upset.  Poor kid… He had been doing so well, that I forgot that he’s also still working through the grief and the emotions and fears that come from it.  Please keep him in your prayers as well.

I wish everyone a fun filled, safe holiday weekend.

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Not sure why exactly (I think it’s a mix of a things), but I have a lump in my throat and an empty/sick feeling to my stomach today…

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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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Ok so the transfusion itself wasn’t 9 hours, but we were there for 9 hours.  We arrived at 8:30, and they took my vitals…whoa…I must have been really nervous!  My beats per minute were 121, and my blood pressure was 130 over 80.  I’m usually 80 beats a minute and 95 over 60.  Crazy!  

Anyway, they wanted to access the port, so the nurse came in and stuck the needle in the port.  No blood return.  She pushed harder and wiggled it around – OUCH – trying to get blood.  She took the needle out and tried again, pushing harder this time.  The pressure in my chest was very painful.  Still no blood return.  They decided that maybe it was the needle, so a nurse goes to get another needle.  Meanwhile I am crying because it’s hurting so badly – this is supposed to be the easy part!  The nurse came back saying they didn’t have anymore of the special needles for my port.  I was about to flip out!  This hospital is not getting great reviews from me!  It’s been a bad experience most times I’ve been there.  Well they found the supply of needles and poked me again, this time it worked!  We had blood!  Finally!  They hooked up the bag of blood and we were off and running.  I was told by my doctor that it would take about 2-3 hours per bag…the first bag was 3 1/2 hours as was the second!  It was ridiculous!  I guess since it was my first time, they wanted to be careful.  It took so long.  Martha and I watched 2 movies and looked through a home magazine dreaming of what we would do to a house. 

When we were done, the nurse took the needle out of the port. She pushed on it as if it were a regular IV, and she needed to stop the bleeding.  Ports really don’t bleed much and don’t need the pressure.  That was the most painful thing all day.  After all the prodding and poking earlier, my chest was really sore and that pressure put me over the edge.  I was all tears and told her not to touch me!  I couldn’t believe how much it hurt.  The nurses really don’t have much experience with PowerPorts because they are still so new and not too many people have them.  They just don’t have the experience with them to know everything.

When I finally left the hospital, Martha said that I had more color.  I’ve been pretty pale – yes, paler than usual – the past two months.  Sol said this was the most color he’d seen in my face in months.

So that was the experience…It would have been pretty easy if the port thing didn’t happen, but we’re past that now!  I’ll be starting chemo on Monday at 2:15.  I was told it will only take about 30 minutes.  That’s a lot better than the 4 to 6 hours it took with the other ones.

Some fun news, we are going to have family pictures taken tomorrow.  A lady in the church takes portraits for a living and wants to take family photos for us at no cost!  I am excited!  

Well on that note, I should get some beauty sleep on my beautyrest mattress for tomorrow! 

Thank you for your prayers and your encouragement.  Who knew so many of you have had transfusions?  You helped me, and so I thank you.  Thank you to those of you who donate blood as well.  You are helping people like me. 

Happy Weekend!

Monica

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The first thing that they said was that I am severely anemic and will need to have a blood transfusion tomorrow.  So even though I was having the shots, my red blood cell numbers went down.  I started crying.  I’ve never had a transfusion before and got very scared.  I think it’s really strange to have someone else’s blood pumped into my body.  I know it happens everyday, but it is still scary!  They are still going to give me the shots, but they raised the dose.

Then they talked about what’s next.  Sol had done some research (my wonderful husband) and found this drug (can’t remember the name) that showed promise in a few cases of angiosarcoma patients.  Not all, but I guess it’s worth a shot if it helped in a few.  It seems like every angiosarcoma patient is different and this disease behaves differently in each person who has it.  After looking at the research that Sol brought in, and staying late at the office last night researching what do to next, the doctor decided that because the side-effects were easier with the one Sol brought information in for, that we would start with that on Monday.  I will go once a week for three weeks, then have a week off.  If my blood count isn’t handling it, then I will go two weeks on and one week off.  I guess we’ll see.

I really want to get out to Washington D.C. to see my older sister, Karen, sometime this month or the beginning of next, but I don’t know how that’s going to work out now.  Please pray that it will still happen!  I have been wanting to do this for months…

So tomorrow is a long day.  I go to the hospital around 8:00 am and am there for 6 hours as they put 2 units of blood into my body.  I don’t know if they’ll be able to use the port…I hope so, but I don’t know.  They drew blood from my arm today in order to match the right blood to me, so that it’s ready when I get there in the morning.  

I will probably be sleeping most of the time, but Martha will be there with me.  I’m scared, but know that this is one more step on the way to recovery!  Fight, fight, fight!  I think I need a fight song like the Universities!  😉

Blessings and Peace,

Monica

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Sorry it’s been a while since I posted.  It was such a treat to have my parents here for the weekend, but I felt awful the whole time, unless sitting in this one position, which I did for hours just to hang out with them.  My mom helped around the house a lot, and being the Lepper family that we are, we played a lot of games!  I wish they lived closer as I’m sure they do too!  

I guess on Tuesday I started feeling better, I guess the medicine started kicking in like it’s supposed to.  I did not have much pain all week – Praise the Lord!!!  I think the mattress helped and of course the drugs. 

Janelle and Athailia stayed for the week and boy was Janelle a busy one.  She even cooked a turkey (you know the one that’s been in the freezer for who knows how long!).  It was and still is fun to have turkey sandwiches – in fact I had one for lunch today!  However, I think we’ll be eating them for a while.  

There have been many blessings for us this week.  Meals were all delicious, mom did my laundry, I haven’t had much pain, ideas were talked about as to how to help us raise some money for when we need it, amazing stories of how God is working to bring people along side of us to help in so many ways.  I am blown away by the support from my school, my community and my church!  

On a totally different note, tonight I sit here trying not to think about what is coming tomorrow.  I have a Ct scan and am terrified to get the results!  I trust that God is working, but in what way I don’t know.  If the scan shows good progress we’ll continue, but if it’s growing, this was kind of the last resort.  I don’t know if there is anything else that they can do for me.  That thought sends my body into convulsing tears!  It’s so easy to see the bad and prepare for the worst; I don’t know if I know how to prepare for the best. I know that I am covered in prayer, and I know that God has a plan for my life.  The fleshly side of me is scared as the spiritual side of me is clinging onto hope and trust in a Savior who performs miracles!  Please pray as I try to wrap my head around this and will have to wait a few days for the results.  

Pray for Kai as we are going to take him to the doctor for pain in his pee pee.  He’s been a lot of fun, but is really starting to test the limits of what he can get away with. 

My mother-in-law, Martha, is coming again on Tuesday until the weekend and then Jess will join her.  Rico’s, Sol’s brother, band will be touring L.A. Tuesday and Wednesday.  if you want more information on that you can go to:  http://pictureatlantic.com/.  

Thanks for always checking in on us.  Many of you let me know it’d been a while…I appreciate your concern and gentle reminders!  🙂

Peace,

Monica

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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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Please pray for our bed issues to be solved!  First we were told that it would be delivered on Monday, then they call and say because of the holiday, it will come on Tuesday.  We called today, now they are telling us it is on back order!!!  The man who sold us the bed was supposed to call us and let us know the status of everything!  We are the ones calling him and he isn’t answering!  I am so frustrated!  I haven’t been sleeping well and want this bed so badly.  I slept part of the night on the couch last night because of pain!  I was in the mattress store trying to figure all of this out and I lay down on the bed we purchased and I could have lay there all day!  It was like a giant hug!  We are trying to find a store nearby that has it in stock, and then we’ll cancel the transaction with this other store!  

Anyway, pray that this all works out and that I am able to get some sound sleep.  

Monica

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I don’t know why, but this Procrit shot is scaring me a lot.  I guess because I don’t know what to expect, and even worse than the shot, I don’t know what side-effects to expect.  Someone told me last time, if it hurts in your bones, it’s working so rejoice. (That was for the white blood cell shot.  This is a red blood cell booster.)  Hmmm… interesting perspective.  I really do hope this give me more energy.  Right now, I am just sitting around the house all day napping on and off.  Don’t get me wrong, it’s nice, but I don’t even have the strength to DO anything else.  No matter how long I sleep, my eyes are always half shut.   

I’ll let you know how it goes.  Last night was attack of the killer cough about 1:30, and then dinosaurs in Kai’s bed around 5:00.  Sol isn’t getting any sleep, please pray for him.  Alright, time to go.

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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