SolandMonica.com

Well, I started having shortness of breath on Friday and it only got worse yesterday.  It got to the point where every breath I took was painful.  The pain started near my right shoulder blade and moved around under my right arm and around to my chest.  My right arm became swollen.  I couldn’t take a deep breath or a short quick one.

We called my oncologist and he said that the shortness of breath could be a side-effect, but the pain was concerning.  He was concerned about blood clots and wanted us to go get checked out.  We were at the Lang’s for dinner and ended up leaving Kai there.  Sunshine took him back to our apartment after he ate to be with Sol’s mom for the night.

We got to the ER about 7:45pm and were taken in right away!  That was such a praise because it was so busy!  They still can’t use the port, so another IV line was put in…on the back of my hand!!!  Ouch!  They did multiple tests including a Chest x-ray, a Chest CT, Blood Work, and an Arterial Blood Gas Levels (another prick).  They gave me Morphine and Benadryll which made me pretty woozie.  Sol’s aunt, Nena, came and stayed with us for hours!

In the end, we were released about 3:30 am with “Shortness of Breath with No Apparent Cause”.   They said that the oxygen levels were normal and that even though I feel a shortness of breath, not to worry because there is enough oxygen.  I guess it’s just something I am going to have to deal with.  Hopefully, when the port is situated and “mature” my chest won’t be so tight and my muscles will be more relaxed.  Maybe that will ease the pain I feel.

Thank you for your prayers.  It was a pretty scary night.  I woke up this morning feeling much better, but am worried that this will be something I will have to deal with each and every time.  I have a bit of a rash on my neck.  I’ve taken Benadryll, and am waiting for that to get better.

I’ll keep you updated with any new news.

Love,

Monica

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I was feeling so terrible after attempting to eat lunch, that I laid down to try to take a nap.  I woke up not even knowing that I had slept.  Hours had passed, but I don’t remember dozing off.  Thank you for all of your prayers as I woke up not feeling ANY of the symptoms I went to sleep buried under.  The rash is gone, the hot spot cooled, no diarrhea, and I can breathe!  God is good and he heard your cries for me!  Please continue to pray as the days go on that the symptoms stay at bay!

Thank you, Jesus!

Monica

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I slept alright last night, but woke up this morning (at 6 thanks to Kai) to diarrhea, and then a rash, gas, and now shortness of breath.  All of which they said would be possible side-effects.  One weird one is on the back of my right arm.  I have a spot that is pretty hot to the touch, but I don’t have a fever.  It has been a pretty terrible morning.  From the best day of the week to…well I guess Wednesday is still the worst day of my week, but this ranks up there.

Please pray that these symptoms go away soon and don’t get worse.  I have to call the doctor in a little bit to let him know how I’m doing.  The major concern I have is the shortness of breath.  I can’t take a deep breath and that is scary!  I know that the avastin constricts all the blood vessels, but it’s still not very comforting knowing that it may happen when it is actually happening.

Thanks, I’ll keep posting, but need your prayers as this first treatment seems to be worse than the whole first chemos I went through.  I know that it gets progressively worse, so that makes it harder to walk through those doors next Thursday.

Monica

Category tags: Cancer Update---- 1 Comment »

I am happy to say that chemo went super smoothly.  No trouble finding a vein (although it was in a weird location on my arm), no reaction to the drugs and not too much nausea tonight.  The only strange thing was that when the Taxol was going in, I could taste it.  Luckily, they had some Lifesavers I could suck on.  They really earned their name today in my book.  I have a bit of pain from the Port Placement, but that’s about it.  I am tired and heading to bed here pretty quick, but just want to let you all know that today has actually been the best day of my week so far!  Hard to believe, but true.

Tonight was the Concert in the Park and our church band played a mix of songs, mostly U2 type songs.  It was nice to go out and see so many familiar faces, but I think I may have pushed it just a bit.  Mostly I just sat there while Sol and his mom chased Kai around, but even that might have been too much.

I guess I just don’t want to admit that I have cancer.  I can still do it all, right?  I just sit here praying that the chemo is attacking these darn tumors as I’m typing or doing whatever it is at the moment.  I talked to the oncologist today and asked him about treating the 4 cm tumor in my liver and then starting chemo, but he said that it is already too big for the less invasive surgical treatments, and that he really thinks that this chemo is going to shrink it enough to get it out with clear margins in a less invasive surgery.  I pray he’s right.  He is going to refer me to a liver surgeon so that I can talk to him about my choices.  I think that might make me feel better.

Anyway, I am doing ok.  I don’t have anything until Monday when I am supposed to have a lymphedema appointment.  I asked if that was ok and the doctor said yes since my tumors are not in the lymphatic system.  I think I have to wear some big foam arm-squisher thing for two weeks and then a compression sleeve.  There isn’t too much swelling, but they want to treat it now, so that there never is much swelling.

On Tuesday, I’ll be heading to Long Beach Memorial for follow-up with the stitches and dressings.

On Wednesday, I’ll have blood drawn, hopefully through the Power Port, if I get clearance on Tuesday.

On Thursday, more chemo.

Thank you for all of your encouragement, emails, support, hugs, dinner volunteering, babysitting, ride-giving, phone calls, text messages, and sincere concern.  You all have been so wonderful!  I cry and smile reading everything you all write.  I received a package FULL of cards and notes from Sol’s brother, Diego’s, church family.  It really touched me to receive such wonderful notes of encouragement from kids and their families who don’t even know me.  There are many who write whom I’ve never met and that is so hard to believe.  I don’t know why I’m having to go through this, but sometimes there are glimpses of how God is using this to touch so many lives.  It is then that I feel as though there is a reason for all of this yuckiness.  The Lord knows what I can handle, I think He’s really pushing the line sometimes, but I am still smiling and taking it one day at a time.  That’s all I can do some days – just fall asleep at the end of the day and take the next one as the sun rises.

Well this became longer than I had expected, but thanks for reading and listening to my heart.  I love you all with every fiber of my being.  This site has become a lifeline for me and a wonderful way to connect to so many of you!

Thank you and God Bless,

Monica

Category tags: Cancer Update, News---- 1 Comment »

I have a Power Port!  Today ended up being much longer than I thought that it would be – 7 hours instead of 5 at the hospital!  I am home now and doing just fine.  I feel a little stiff, but I think that’s because I don’t want to move too much.  I am afraid that I will do something wrong and it will all come apart.  Silly, I know, but true none-the-less.

Overall, I am feeling well.  I am a bit tired and will be going to bed soon, but am thankful that this part is over and that I will only have to be poked one more time (tomorrow) before using the port.  The port takes a week to “mature”.  It will not be ready tomorrow.

If you want the details of today – keep reading,  if you don’t – skip to the end!

The whole reason that I am getting the port is because my veins are becoming harder and harder to find.  This was truly evident when they were putting in the IV.  It was really painful and continued to be painful for the next 6 hours until it was taken out.  There was blood all over my arm after she put the IV in, and it didn’t get washed of until I got home.  They wheeled me into the room and I laid there watching them get everything ready.  I can’t have anything done to my right arm (like blood pressure, blood draws and IVs) so they put the blood pressure cuff on my leg.  When it squeezed my calf, it felt like a Charlie Horse and I was screaming.  They did it twice and then just put it on my left arm with the IV…not ideal, but definitely better than my leg.  I wasn’t put all the way out and don’t think that they gave me enough medicine.  I could hear and feel everything.  The doctor had to put a nick in my neck to feed the tube in, and when he did he said “Uh Oh.”  Not too comforting.  I could feel blood running down my neck!  Yuck!  Then when he made the hole for the Power Port, he said, “I tore a vein.”  I could feel pain and asked for medicine multiple times.  I think they may have ended up giving me too much as I was in recovery for a long time.  While in recovery, I asked for pain medication.  They have a new computer system at the hospital, which everyone was complaining about, and I had to wait more than 20 minutes to get any sort of pain killer.  Then it wasn’t enough, so they gave me more.  Anyway, that computer system really is bringing things to a halt over there.  It has only been a week and they’ll probably get faster, but when you looked around, all the nurses were on the computers trying to find where to input stuff and many patients were waiting around.  I would have been discharged sooner, but they couldn’t find where to print my discharge papers.  My friend, Keri, was told about 4 times that I would be ready in 30 minutes…she waited 3 hours just to see me!

It was a really frustrating day at the hospital, but it’s over and we’re moving on.  I start chemo tomorrow morning.  I am scared and nervous.  Sol’s mom comes in tonight and will be there with me tomorrow.  It will take about 3 1/2 hours pending it all goes smoothly!

Your prayers are so desired and felt!  I know that the Lord is in control of everything, and it is only through His strength that I get through each day doing what I must.

(Um, I just puked, need to go to bed.  Maybe, I’m not feeling as well as I thought I was!)

Love,

Monica

Category tags: Cancer Update, News---- 3 Comments »

Well, today was a really long and trying day! But in the end, we can celebrate. I’m getting the Power Port!

After waiting for my doctor’s office to call me about the authorization, I finally called them. The authorization to change facilities had gone through, but it hadn’t been sent to the hospital yet and no one had called me to let me know. She said she would fax it right away to the hospital and then they would call me with an appointment time. I waited about 30 minutes and then called the hospital myself. The scheduler wasn’t there when the doctor’s office called, so she didn’t even know that they had faxed the authorization. She got the auth and set me up for the appointment right there on the phone. If I hadn’t called, I might not have heard anything today. It is so frustrating to have to keep on top of everything, but I guess necessary to keep things moving.

I’ve heard that you need to be on top of things and be your own advocate many times, but can’t it ever be easy and right the first time??? I can imagine many people would just accept what is told to them and that makes me sad because they aren’t getting what they deserve and sometimes need!

So, my appointment is at 10:00 on Wednesday morning. I am so glad to have the appointment, but it is on the ONLY day that I had anything planned ALL summer. I was going to be heading to Angels Stadium for a mid-day baseball game. I won tickets at the Relay for Life back in June, and now I can’t go. I’m bummed! Instead I’ll be at the hospital for approximately 5 hours. I’ll get over it eventually! 😉

A friend told us that we are “Rolling with the Punches” to which Sol replied, “Yeah, but we’re getting pretty beat up.” That’s pretty much how we feel, but our God is bigger than this trial, and He will carry us through! Thank you for all your prayers. Things are moving in the right direction and I know that your prayers have played a major role!

Love,

Monica

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Well, there is no port today.  I am very disappointed.  I got up this morning, checked into the hospital, changed into my beautiful gown, and was about to get pricked for a blood draw and an IV, when they stopped everything.  They told me that they don’t do Power Ports at Presbyterian Hospital.  I was being told that if I wanted a port today, it would have to be a regular port – meaning that they will still have to find a vein when doing CT scans.  Sol and I were on the phone for the next 2 hours figuring out what our options were.  Did I need to get whatever they offered because of the urgency of the situation or could we find a hospital that could do the Power Port and change the authorization in time to begin chemo on schedule?  It was a horrible time of asking questions and weighing the options.

Finally, the doctor who was going to put the port in, came and talked to us.  He puts in Power Ports everyday at a different hospital.  He said that Power Ports really are better and called the other hospital himself and talked to someone in charge of scheduling and she said that she could probably get us in tomorrow, but by Wednesday for sure.  She took the information and called my oncologist and had them begin the process of transferring the authorization to their facility.  She is supposed to call me back today to let me know when the appointment will be.  Praise the Lord for a doctor who is looking out for patients and not just money or protocol – someone who was willing to make a simple phone call to help us out!  I will be forever grateful!

The great news that we heard today (in the middle of all of this), was that the anti-angiogenesis drug has been approved!!!  🙂  I am so happy about that.  They will not postpone chemo because of the the Power Port delay, but will begin on Thursday at 8:45 am, no matter what.  If the Power Port isn’t ready to be used due to some swelling, then they will do the chemo through an IV this week and begin using the port next week.  I am so relieved to hear that this ridiculous delay in the Port won’t delay my treatment any!

I will be writing a letter to Presbyterian Hospital and my oncologist about this whole ordeal.  Someone should have caught the mistake before I checked in to have the procedure done.

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Well, what a wonderful surprise…my sister, Karen, flew out from Washington, D.C. on Thursday night!  It was fun to have everyone together.  We are both going to be heading home tomorrow (Sunday). 

I will be having a port put in on Monday at 9:30 am.  I am really nervous about the whole procedure and don’t know really what to expect.  I am not sure when chemo will begin and haven’t heard if the anti angiogenesis drug (avastin) has been approved or not.  Sol did some research on Taxol and found that it has a history to be effective in treating angiosarcoma.  That is such great news.  I also found out that one of the side effects will be losing my hair again.  I just got it back!  🙁  But, hey, if that’s the worst of it, then I’ll take that.  I have enough hats to last a long time!  🙂 

Thanks for your prayers and support as I begin a new battle this week.  I really appreciate everything everyone has done for us! 

Love,

Monica

Category tags: Cancer Update, News---- 4 Comments »

Well, the doctor called me today after talking to the sarcoma specialist at Cedar’s Sinai.  I will be starting everything next week.  I spoke to him at length this evening about a lot of things, but will give you a brief description tonight as I am really tired.  (Kai was up at 5:30 this morning) 

Well, I will be having a port put in the beginning of next week as chemo will be every week this time, and my veins are already running at the thought of more needles.  I will be receiving Taxol once a week for three weeks and then have a week off and then three weeks on and one off for a few cycles.  Then they will do another scan to see if the chemo is working.  He wants to do Taxol in combination with an anti-angiogenesis (inhibits new blood vessel growth) drug.  Please pray that the HMO approves the drug as right now it is not used for this kind of cancer, and it is very expensive! 

So as soon as the port is ready, I will begin treatments.  If my body handles chemo like the last time, then I will do just fine…I just pray that it works on every single growth – those we can see and those we can’t.   My stomach begins flipping just thinking about chemo, and I can even smell the drugs from my memory! 

Since things aren’t starting until Monday at the earliest, I am going to stay here in Paradise a while longer – maybe returning on Saturday or Sunday.

On a different note, you’ll never guess (unless I’ve already told you) who played with Kai at the Burbank airport during a flight delay…Barry Bonds!  I chatted with him for about 15 minutes and took a picture with him.  I’ll post that soon – I don’t have a way to get the picture off my camera here at my parent’s house.   🙂  Fun, huh?

Category tags: Cancer Update, News---- 3 Comments »

Hey Everyone,

I know you are anxious to know what the doctor said today.  I’ll start with the good news.

The good news is that there is no tumor on the chest wall.  Sol read the report wrong and there isn’t anything new there.  Yay!

Now the bad news…Sol originally thought all of the suspicious growths were less than a centimeter, but there is one in my liver that is 4 cm.  For it to become that large in only three months means that it is growing really fast.  There are multiple growths on my right lung – one near the top and some scattered toward the bottom.   The doctor said that they are all operable.  He also believes that they are all most likely angiosarcoma, but without a biopsy, it’s hard to be 100% certain.  He is concerned that a biopsy might cause internal bleeding, but is going to ask the specialists about that.  He has a call into the sarcoma specialist that I was referred to back in April to ask his opinion on the next step for me and the recommended treatment path.  We should hear back by Wednesday, but chemo has been mentioned along with clinical trials.  Now my cancer is classified as stage 4 because it has spread outside of its original location to multiple other tissues.  Stage 4 sounds so terrible, I can’t hardly say it.

With that said,  I have booked a flight to see my family.  I want to go see my sister and her little baby girl before I start treatment and can’t go anywhere.  I am bringing Kai with me and will stay as long as I can.  I do not have a return flight booked, but will book it as soon as they call me and tell me it’s time to start treatment.  Sometimes you just want your mommy and daddy!  Know what I mean?

I am so scared and in a state of shock.  I am praying that when they go in to biopsy it (if they do) that there will be nothing there!  I am praying for a miracle and would ask that you join me.  May the Lord be praised in the midst of my pain and suffering.

Love,

Monica

Category tags: Cancer Update---- 6 Comments »