SolandMonica.com

Hi Everyone,

I am sorry that I haven’t updated in a while. Nothing has really changed in terms of my treatment. I continue to be treated on a daily basis. It doesn’t take long once you’re in, but sometimes they are running a bit behind. Good thing they have a puzzle. I don’t mind waiting, if there is a puzzle. We finished the tough puzzle and have just about finished the new puzzle. It’s kind of amazing to sit there and think that so many different people work on the puzzle – people who are fighting the beast and their support team.
Treatment seems to be going well. I am a little more pink by the day, and the doctor says it is going to worse before it gets better. I am halfway through the tough part of the radiation. When this part ends, then I’ll have a few treatments directly to the scar. I am looking forward to May 23rd, when all these treatments are behind me. I know that I’ll have to have scans every three months, which will bring on major “scananxiety” (a term I recently ran across), but I trust in the Lord and know that I am in His mighty hands. With that knowledge, comes an amazing, indescribable peace.

Sol is feeling much better, although his tonsils is still sore and inflamed. Please continue to pray for him. Kai continues to be a wonderful little boy! He is so active and adorable. He learns and uses new words every day! It’s amazing to see him grow and learn. The big news there is that he peed in the potty for the first time. He was so proud of himself! He hasn’t done it since, but he’s interested!

The last thing to report is that I have an appointment tomorrow for my prosthetic tatas. Oooh, La, La!!! I’ve experienced the gamut of sizes in my existence, and by far being in the middle is the best place to be. I guess that’s one good thing about this process…I’ll finally have the size I’ve always wanted. It’ll be an interesting experience I’m sure, and sorry, NO photos of this fitting will be posted! It’ll only be in my memory! 😉

Farewell for now. God bless,

Monica

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The memorial this weekend was very touching. Keith was an amazing man, and he will leave a big hole in many lives. The church was packed with people from all areas of his life. They all heard the gospel and how Keith’s faith is what made him the man that they all loved. It was a treasured time of remembrance and sorrow for our loss – many smiles and many tears as we said goodbye. His family remains in our prayers and will be there for a long time! We love you Kim, Kelby, Kendall and Kerrigan.

As for me, it’s been 6 treatments and I feel like I’ve stayed up all night for days in a row. I am getting more and more tired. I have also noticed that I get a bit nauseous for about 15 minutes afterward and am feeling a little dizzy these days. I don’t know whether those are all side effects of the radiation or if it is what Kai had this past weekend. Sol seems to be a bit under the weather, so it could be a few things all adding up to this.

Other than some fatigue, nausea and dizziness, I have also had some redness in the treated area. It first showed up on Monday after treatment, but went away before treatment the next day. After telling the techs about it, they said it was too early to have “burning” from the radiation. They suggested that I might be allergic to something. So I’ve been paying attention to see what might be triggering the redness.

Here is one theory…there is a special thing (a bolis) they place over my chest every other day to pull the radiation closer to the skin. Monday was one such day and today another. I’ll be looking to see if it is red again tonight. I do have very sensitive skin, so this could very well be the culprit.

Another theory is that I am SUPER fair and radiation IS affecting me earlier than it would most people. That wouldn’t be out of the question either.

Other than those things, radiation seems to be going pretty smoothly so far.

Just a note for you puzzle lovers, in the waiting room there is a puzzle that many people work on. Many of those waiting complain that it’s too difficult, but it’s become a bit of an addiction for me. Ok, I admit it, I am a closet puzzle addict. 🙂

Finally, on Friday, I am planning on flying up North for my sister’s baby shower; it will be good to see everyone up there as I haven’t been there since August. Kai will be staying here with his dadoo, and Sol’s Dad and Martha will be coming down here to help out and visit.

Thanks for listening and for your prayers.

Monica

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Today was the first radiation treatment.  I was ok until about 30 minutes before the appointment.  I started freaking out.  I was planning on going by myself (it only takes about 5 minutes once you’re in there), but I called Sol and he met me there. I was so glad that he did.  I guess anytime you start something new, it’s scary.  I started questioning whether or not I should go through with the radiation.  I told myself that no matter how scary it may seem, it’s the right thing to do because Kai needs his mommy and Sol needs his wife.  So to give me courage, I put on my monkey socks, because I need to be there for my monkey!  Sounds silly, but it helped.

I was meeting Sol there and arrived before him.  I sat in my car with my head resting on the steering wheel and prayed with tears streaming down my face.  After that, I had peace, and I was ready!  I got out of my car and waited for Sol to get there.

When he arrived, we walked hand in hand toward the door.  He gave me a great big hug and tender kiss.  We walked in, I changed into my “beautiful ball gown”, and then we waited for the tech to take us back.  Sol was able to come with me until they began the actually radiation.  He saw me laying on the table, while they lined up the lasers to my tatoos.  I’m sure it wasn’t easy for him to see, but he was brave for me – giving me a kiss before leaving the room with the techs.  It didn’t take long, and I felt nothing.

They said that the first week will be the easiest.  I will feel tired, but the skin stuff doesn’t happen right away.  Although I can’t see any effects, I still have to start today applying the lotion and powder 2-3 times a day.

Anyway, I will be braver tomorrow . . . I think!  I’ll have to choose my socks tonight as my appointment is at 6:45 tomorrow morning.   🙂   I’ll be having one more treatment then I originally thought, so now my end date is May 23rd.  (sorry sis).

Tonight I also talked to Linda, an angiosarcoma of the breast survivor.  She is nine years out of treatment.  She told me that if it hasn’t come back in two years, then it’s not going to come back.  (I also remember the doctor saying the same thing.)  So May 23rd, 2010 is my celebration day.  I know I’ll still be wondering with each pain if it is back, but that’s just normal.  It was really encouraging to talk to her.  She made sure to make herself available to me through this whole process by phone or email whenever I need it.  Her treatment was similar to what I already received although it was in a different order.  She told me that the worst of my treatment was over and that radiation was nothing compared to what I’ve already been through.  I liked hearing that.  🙂

Today was the beginning of the end of treatment.

Monica

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Well, I guess today was a big day…getting tatooed and all.  Ok, ok, so they are only the size of a pin prick, and I hardly felt a thing still being numb from the surgery, but it’s a big deal.  😉  

The big day I am actually referring to is tomorrow.  All of the pre-radiation treatments are finished and now radiation will actually be starting.  The two biggest side effects are fatigue and skin irritation…kind of like a sunburn.  I guess I have a lot of experience with both being a new mom, and one of the palest people on the planet.  So things should be rather familiar…unfortunately.  I really am afraid of the “sunburn” part of this.  I received a bunch of skin stuff (soap, lotion and powder) to put on daily.  I just know my body, and it loves to soak up the sun!  I’ve heard of blistering and pain, so mentally I’m preparing myself for the worst.  Anyway, if I counted correctly and we don’t have to skip any days, I’ll be done on May 22nd…Happy Birthday, Karen.   

So the final chapter of treatment starts tomorrow.  I can’t wait to get this all done.  I’ll still be having scans every three months and praying that there is nothing ever found, but for now, this is all there is!  🙂   My schedule for radiation therapy is:

April 9th – 2:00 pm

April 10th (Happy Birthday Mom) – 6:45 am

April 11th – 2:00 pm

April 14th – 2:00 pm

April 15th to 17th – 3:48 pm

April 18th – 10:00 am

April 21st to May 22nd – 3:48 pm

On a different note, my hair is about 1/2 inch long now.  I never thought the day would come when I’d have bedhead again, but it’s here!  I was so excited to keep all of my eyelashes during chemo only to have all but three fall out a month after my final treatment.  They are coming back in now, along with everything else including eyebrows, armpit hair, leg hair, and nose hair.  😉  Yes that’s right, that was gone, too.  Life is slowly going to return to “normal” if that even existed before. 

One final thing on a tragic note.  A dear friend of ours was killed in a car accident last Wednesday evening on his way home from Vegas.  Please pray for his wife and three daughters.  He will be forever missed.   The service is Saturday.

Love,

Monica

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Well, yesterday began very early with a radiology appointment. It was the first of three pre-radiation appointments that I’ll have. They scanned the treatment area to get a 3-D computer model to plan from. They used a sharpie to define the perimeter for treatment. The marks are still on my body covered with tape, so that they’ll be there the next time I go in. At the next two appointments, they’ll check and double check that it’s exactly what they want to do. When they’re sure about the marks, they’ll make them permanent…yes, that’s right…this little goodie-two-shoes is getting tatooed! Three tatoos to be exact. (Boring little black dots, but tatoos none-the-less) They want to do four, but one will be visible right in the middle of my neckline. The vain woman part of me doesn’t want it showing, so they’ll use a sharpie and darken it daily so it’s not there forever.  I just received a call saying that the plans are done and I’ll be going back in on Monday at 12 to do the second appointment and the third will be on Tuesday at 1:30.  It looks like we’ll be starting radiation next Wednesday and go for 32 consecutive weekdays, approximately 6 1/2 weeks.

Also yesterday, I finally got the car washed and the oil changed.  Sounds like a trivial thing to mention, but it’s been needing to be done for a while and feels good to have out of the way!  🙂

After the oil was changed, I had an appointment with the surgeon.  There was some fluid build up that he took out.  It had showed up on the CT scan and was jiggling around.  Not much fluid, but it was a little annoying.  I feel better now.

On the way home from picking up Kai, my oncologist called to say that he’d spoken with the specialist and that radiation and scans every three months were the recommended course of action.  Not too much of a surprise there.  I originally has an appointment scheduled for Monday 4/7, but we canceled that and scheduled one for 3 months from now.  I’ll have bloodwork and a CT scan the week before the appointment.

Oh yeah, last night we went to the LA Galaxy game.  David Beckham, the famous English soccer player, plays for the Galaxy.  It was opening day!  He scored the first goal.  It was so wild and fun.  We were invited by Sol’s friend George whose company has a luxury box.  In our box was a WWE wrestler (6’8″ with HUGE muscles) and a few boxes over from us was Kobe Bryant and his family.   George even saw Posh Spice (Victoria Beckham) in the hall outside our box.  It was pretty cool.  The Galaxy won 2-0.  😉  We’ve been doing a ton of fun things recently, and they’ve been such great distractions for us.  On Thursday next week, we are going to try and go to Disneyland with Sol’s cousin, Gracie.

Anyway, I’m getting ready to go to Women’s Retreat and need to make sure I’m ready to go when the carpool gets here in a few minutes, so for now, adios friends!

Monica  🙂

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I just found out that I will have a radiology appointment tomorrow 4/3 at 10:00.  I think it is to get me all set up to begin treatment.  It is supposed to take about an hour and will be simulations of the real deal.  From my limited understanding, gleaned from “The Idiot’s Guide to Chemotherapy and Radiation”, they’ll be scanning my whole body a few times to create a 3-D computer model, so that they can get the exact “line of fire” and only radiate the chest wall and avoid the organs as best they can.  I guess we’ll see tomorrow.

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Wow, I just read what I posted yesterday and in my haste, I think it was a bit incomprehensible!  🙂  So here is the low-down so to speak.

The specialist was not as helpful as I’d hoped he’d be.  Most of what he said, we already knew.  There just isn’t enough known about angiosarcoma or sarcomas in general for that matter.  He didn’t really give any firm answers which was quite frustrating.  Fr example, in response to a question about more chemo, he actually said, “It’s not necessarily necessary.”  About radiation, he said, “It’s a reasonable option.”  I guess there really aren’t any firm answers to treatment questions; they really don’t know what works best for now.  As far as we know the best treatment is surgery, and I’ve already done that!  He did mention that the places to watch for recurrence are the original site of the tumor and the lungs.  He also called one of his former angiosarcoma patients (a success story) and gave her my number.  She called last night while I was at Bible Study, but I’m going to call her back later.

So here’s what I got out of the appointment.   I will be starting radiation every weekday for 6 weeks or so, I’ll have CT scans every 3 months for 2 years and it doesn’t look like I’ll have anymore chemo for now.  🙂    My scans are clear, so right now, I am CANCER FREE!!!  Yipee!!!

How I feel…hmmm…that’s tough to really figure out.  I am full of worry, dread, fear, joy, faith, and hope.  I know that there is still a great deal of worry in my mind because of the high rate of recurrence.  I dread that nasty tasting CT scan serum, but will drink it every three months for continual monitoring.  I’m overjoyed about the cancer being gone.  However, tears come all the time because I’m still so scared!  Overall, though, I’m doing well.  Right now, I’m a survivor and that’s something to celebrate.

Thanks for your prayers and encouragement.  I know God is using you to lift me up and keep me going.  You’ll never know how much you have touched me.  This blog has been so therapeutic for me, and knowing that you read it and lift me and my family up in prayer truly inspires me to keep writing.

As I sit here, I am reminded that someone once told me, “Our tears are silent prayers, and not one goes unnoticed.”  Thank you for the many silent prayers that have fallen off your face for me.  The Lord has seen them all!

Much Love,

Monica

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Well first of all, I want to describe picking up my mom and Kai at the airport. We were so nervous that he would be mad at us, but as he came down the escalator he was all smiles. He said, “Dadoo” and “Mommy”. As he jumped off the escalator, Sol picked him up, and we stole some much needed and longed for hugs. That was all we got, as he was much more interested in going up and down on the escalators and petting the little doggie that was there. He was the same happy little boy but with a larger vocabulary.

The weekend with my sister, Karen, and my mom was really fun. It wasn’t all that active, but hanging out was just what we needed to do. On Friday, Karen and I did girly things. We had our fingernails and toenails painted and watched chick flicks. On Saturday, we continued our girl time by going to a movie and shopping.  My cousin, Rachyl, hung out with us on Saturday night, we played games and had such a good time.  On Monday, we walked to breakfast and then went to visit my grandma in Santa Ana before dropping my mom off at the airport.  Kai had a hard time saying goodbye to Grammie; he’s really going to miss her.

I really missed all of the joy that Kai brought to our home.  One of Kai’s favorite sayings now is “I did it!” He said it for the first time in the bath tub as he used hooked a plastic boat and fish onto the fishing pole dadoo was holding. He thrust his fists in the air and proudly declared his independence, “I did it!” The rest of the weekend was full of cute things like putting his Cookie Monster to bed, taking Cookie to the potty, shifting his plate from Grammie to Mommy when he realized that Grammie’s ice cream was gone but Mommy still had some to share, watching (only inches away) a caterpillar crawl around, kicking his soccer ball around the concrete “yard” and just being curious about EVERYTHING!  It was so good to have him home.

This morning, Karen took Kai to daycare as we left at 6:15 for our 9:30 appointment.  (Is LA traffic horrible?)  We had some time before the appointment, so we went to breakfast and talked through all of the questions that we wanted to ask.  It was helpful.  We finally got to the appointment and waited as he looked over all the reports, films, scans and slides that we brought with us.  Great news…the CT last week showed nothing…it was clean!!!  In asking our questions, he never really gave us a straight black and white answer.  I think this is because there is still so little known, even the experts only see 4-5 angiosarcoma patients a year, that the causes and effective treatments are uncertain.  After talking to him for almost 2 hours, we walked out of the office with these comclusions:

1. Radiation is a “reasonable proposition”

2. More Chemo?  – “hard question, probably not now”

3. CT scans every 3 months.

4. Eat a generally healthy diet – leafy greens, fiber, limited red meat.

5. Recurrence risk is high, but we’re hoping that it doesn’t come back, but if it does, we’ll tackle it then.

So the plan is to proceed with radiation and do CT scans every 3 months to detect anything should it arise.  So in essence, the plan remains the same.

I have to run to a dentist’s appointment, but I’ll write more about how this makes me feel later.  Thank you for all of your prayers and concern.  You are all so wonderful!

Monica

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