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I am happy to report that my appointments for this week are over! Yea!I went to the radiology oncologist on Tuesday; and as expected, we wait for the sarcoma specialist’s recommendations. I asked a TON of questions, and we are set to go with radiation if that is what comes next for me. We will soon see what course of action is ahead.

After the radiology appointment, around noon, Sol called me and said, “What are you doing today? Do you want to go see Jay Leno? I can get free tickets!” So off we were on an adventure. It was a blast. The guests weren’t too spectacular, but it was fun none-the-less. Then we went to Hollywood and hung out for a while. This week has really been quite busy…Fun, but busy!

Today I had my CT scan. After spending ALL day at Sea World yesterday, I had to get up dark and early to start drinking that nasty barium solution. I made toast first (wouldn’t want an empty stomach), then drank one bottle as I watched Chikeeze get booted off American Idol. When that bottle was done, I went back to bed, only to get up again an hour and a half later to drink the second bottle. When I arrived at the hospital, they tried to put an IV in for the iodine injection, but the vein wouldn’t cooperate (as it hasn’t wanted to for a while now). After failing once, the technician went for the back of the hand. OUCH! Let me say that again! OUCH!!! It was successful, but painful the entire time it was there. The scan began, and when they injected the iodine, it felt like my hand was going to explode. It was absolutely terrible. I was only too glad when it was all over and the needle was taken out of my hand. I will hopefully be picking up the results tomorrow afternoon.

The other thing that happened today was that I obtained a copy of the surgeon’s report. There is a lot of detailed gross stuff in it about skin flaps and tissue descriptions, but in it he also said, “…the patient is rather slender…”. Did you hear that? He called me “slender”! 😉 That is something to smile about, huh?

Anyway, I hadn’t written in a few days and wanted to update you all on what had been going on here. I am recovering quite well and gaining good range of motion as I do my exercises.

Tuesday is the big day. I am very anxious and wish it were tomorrow. Speaking of tomorrow, my sister, Karen, is flying in and on Saturday my mom comes back with Kai! We are excited to see him and hope to get a BIG hug when he comes home. Please pray for safe travels for all these dear people in my life.

Thanks for reading my postings and for taking an interest in my life and situation. MANY of you have been bringing food by, and Sol and I have really appreciated all these delicious meals! You are all so special to us, and we can’t thank you enough for your caring hearts and prayers.

Love to you all,

Monica

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Praise the Lord!  The authorization went through today to see the sarcoma specialist!  After being denied twice, finally word came that it was authorized.  I have an appointment on April 1st at 9:30 am.  I am relieved, but still very anxious to get in to see him ASAP.  I guess I just have to wait and pray.  We can’t do any treatment until I heal, so I guess waiting is what I have to do anyway.

Thank you for all the well-wishes and support.  Many of you wrote to ask when the storming was!  That made me feel so great!  It was nice to have so many of you feeling what I was feeling.  ANGER!  I guess what happened was that the person in charge of authorizations didn’t have enough information.  Many of my doctors were calling and being very persistent.  I gives me comfort knowing I have the right people on my side!

You are all the best.  You keep me going.  Thanks for all the posts in the past few days.  It’s been so encouraging to read them all.

The schedule of events is this:

Tuesday, March 25 – Radiology appointment

Thursday, March 27 – CT scan

Tuesday, April 1st – Sarcoma Specialist appointment

Last night we had a video conference with my parents and Kai.  Kai was so cute.  He could see himself on the screen and kept making faces and showing off his belly button.  He was laughing at himself!  It was adorable.  Seeing him was such a treat.  The first moment he saw us, he put his head down and looked really sad.  We cheered him up, but it was hard to see him like that.  We really miss him around here!

Anyway, that’s it from here for now.  Praise the Lord things are moving again.  It felt like a stand-still for a few days.

Love,

Monica

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Well my CT scan is scheduled for next Thursday the 27th at 9:00. That means I have to wake up at 5:30 to drink that AWFUL stuff.

Please pray that the authorization to see the specialist goes through. It has been denied twice and is being resubmitted once again! There are many people here ready to storm the office and demand authorization; it’s so wonderful to have those kinds of friends and family on my side. We’re just about ready to raise a stink, but the “No” has not been final. My doctors are being persistent and will keep filing. So for now, we are sitting tight, but not for long. This process needs to speed up. Sitting around waiting is not really my thing!

Anyway, tonight we have a Family Fun Festival and Farmers’ Market nearby and will be hanging out with a bunch of friends. It’ll be a fun time. I am also getting a TON of scrapbooking done. That has been a great distraction.

We will keep you informed as to what is happening, but for now we need your fervent prayers!

Hanging in there,

Monica

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Well, today was the appointment with the oncologist. He didn’t really tell us anything that we hadn’t read on the internet. The cancer I have is really rare and any treatment decisions are going to be based on so few cases, that it’s hard to tell if it will be effective in my case.

The Basic Info:

1) Two of the three chemo drugs that I had been given already are known to be active in fighting angiosarcomas as well. So that couldn’t have been bad.

2) Because the clear margin near the chest wall was too small, 0.4 cm, radiation will most likely be in my future.

3) Chemo is on the table again as a possibility…Yuck!

4) I’ll be going to a specialist soon (waiting on authorization) – to a doctor specializing in sarcomas at Cedars Sinai.

5) I’ll be having a blood test and CT scan hopefully both this week.

6) I will be having CT scans every three months, for at least the next two years, to try to detect any recurrences.

So those are the “highlights” of our appointment today. While I wait for things to get going, I am going to try not to think about it much, but that will be hard. I have to make a decision, as do you all every day, to have a positive attitude. There are things in life we can change and then there are things we can’t. This is out of my control and in God’s capable hands. So I will do what I can and pray! Thanks for all of the phone calls, emails, and encouragement posts! I am feeling very loved and cared for. Thanks!

Monica

P.S. Kai is in Paradise right now with my parents until the 29th of March. We miss him, but it has given us time to take care of this new twist on our lives, and we’ve been able to sleep in for the first time in about 21 months! We were in bed until about 10:00 am on Saturday…thanks Mom and Dad!

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Along with what we hoped it would say about clear margins, the pathology report held quite a worrisome surprise.  As the surgeon was looking over the report, he kept making faces and saying, “How interesting”, “Hmmm”, “Wow”… and other things you don’t want to hear your doctor saying as he’s reading a report you thought might be predictably boring.

Apparently the cancer I have isn’t a breast cancer.  It is called angiosarcoma of the breast.  So nominally, it’s breast cancer, but it could have occurred anywhere in the body.  It is a rare cancer of the lining of the veins and arteries – the endothelial cells.   Only about 2-3 in 1,000,000 cases occur annually.  I don’t have too much information about it yet, but from what I’ve read, it doesn’t sound good.  I have an appointment on Monday at 4:00 p.m. with the oncologist to find out more about what it is, what treatment looks like and what (if any) tests need to done.

I am really frightened and angry about this.  It feels like the first day that they told me I had cancer all over again.  It’s really quite overwhelming.  Here I thought we were on the home stretch, and we’re at the beginning all over again.  I can’t believe this is really happening.  I’m trying not to freak out about the unknown, but it really is unknown and that freaks me out.

I will keep you all updated as I find out more.  I have decided not to read anymore on the internet and just to wait until Monday to find out anything new.  Please pray that I can sleep and rest in knowing that everything is in the Lord’s control, what was there is GONE and that I’ll be informed soon.

Thank you, and love you all,

Monica

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Well, I’m finally home! It took a while for me to meet all the discharge requirements, and then when I did, it took a while for them to get all the paperwork and wheelchair ready. Yesterday at about 6:30 pm, I walked through my apartment door. It was nice to be home and see my little guy! I slept in my own bed and wasn’t woken up every two hours for blood pressure readings.

Today I had a home health nurse and physical therapist come by to make sure things were going well. They’ll be back a few times to get me going with exercises and to make sure that I have healed correctly. I am thankful to have them coming by my house and available to answer any questions I might have. Also, today I received a mastectomy garment. I didn’t even know those things existed. It has special pouches for the drains (right now they are taped to my body and pinned to my shirt). Hopefully it’ll be the best thing since high-speed, wi-fi, 10 gig downloads. 🙂

Well, the next step is an appointment with the surgeon on Thursday (at 1:30), where the drains might be removed. I’ll be glad to have those gone. Emptying them is pretty disgusting! (Thanks, Mom!) When those are gone, then I’ll feel like it’s finally time to really recover. The radiation oncologist will be calling this week to set up a consultation appointment. I can’t believe how fast everything is going to go. In about six weeks, I’ll be starting radiation, and then six weeks later it’ll all be over. Then it’s time to PARTY!

Thanks for all the visits, emails, encouragements, gifts, card, yummy treats, dinners and prayers that you all have been sending our way. We are truly blessed and feeling very loved! 🙂

By the way, the encouragement board glitch fixed itself. Hopefully there will be no more spam.

Love to you all,

Monica

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It’s already the day after surgery, but I still feel like we should record the events of the day yesterday so I will continue where I left off last night.

Part 2:
I hadn’t gotten up as early as 5:00am for a while, so that must be why the coffee at Marie Calendar’s seemed to taste especially good that morning.  I’m really thankful that my grandma and aunt were there to distract me; I didn’t need the time to go any slower than it already was going.  Secretly I was hoping that we would be there eating breakfast long enough that upon heading back to the hospital, Monica would be out of surgery and ready to be seen.  Apparently that wasn’t the plan.  She was supposed to start surgery at about 7:30am, and my excitement about her getting in a half hour early turned into concern when it turned 10:30am and we still hadn’t heard from the doctor.  They told us the procedure would take about an hour or and hour and a half.  10:30am made it about 3 hours!  Fortunately a friend from our Sunday school class who is a nurse at the hospital decided to visit us in the waiting room that morning and found out how long we were waiting.  She made a few phone calls and got word that Monica had just entered the operating room!  At least we were able to relax knowing that nothing was wrong.  Thank you so much, Rachelle, for coming to visit that morning.  By the time we got a call to see Monica it was after 1pm.  That would have been a really long time to wait without any word of her condition.

In the meantime Monica’s parents joined us in the waiting room after dropping Kai off at day care.  We were visiting with some other friends who came to visit and were getting hungry.  All of a sudden I got a text message saying, “Do you want Italian, Mexican, Chinese, or American for lunch?”  My friend’s wife from my men’s bible study wanted to bring us lunch.  It was God’s timing.  Monica’s parents decisively craved Chinese food, so it was broccoli beef and shrimp with snow peas for lunch.  Just as Catt got there with the food we got a call to see Monica.  Catt waited for us in the cafeteria. 

My stomach turned when we walked into the room and saw her.  She was sleeping, but she had a look of pain on her face.  I wasn’t sure whether to gently wake her to give her some support and encouragement, or to just let her sleep.  The nurses decided for us as they walked in and told us she would be moving to her own single room.  It turned out that our nurse friend made a few more phone calls and made sure that Monica got the next single room that opened up.  Since Monica was still groggy, we got a chance to go down to the cafeteria and eat.  By the time we came back up, she was more awake and ready to receive all our love.

The rest of the night was filled with people showering her with love and support.  She’s received some of the most beautiful flowers we’ve ever seen.  Some friends brought by chick flicks and cookies.  Some other friends even brought me shampoo, a tooth brush, and some pajamas.  Monica had a craving for frozen yogurt and someone brought that by too.  We have been blessed by you all so much and are forever grateful.  We can’t express how it has really made a difference to have people in our lives who care so much and who are willing to help.

Later in the evening Monica’s folks brought Kai in to see her.  He seemed a bit confused at first, but was excited to see us.  One of the first things he did was to walk up to the side of the bed and raise his hands up to Monica asking her to pick him up.  It was a little bit sad, but cute at the same time.  I quickly tried to distract him with a little bag of graham cracker cookies that someone brought, knowing that Kai would love some cookies.  He took the first cookie that I gave him and walked over to Monica to give it to her.  I gave him another cookie and he did it again.  What a sweet kid!  Normally he would have horded those cookies and not shared them with anyone.  As it is, he didn’t offer any of those cookies to anyone else in the room except for Mama.  When that little bag of cookies was done, he had offered the majority of them to Monica and only kept a few for himself.  He might be a little bit confused about what is going on, but he definitely knows that Mama needs a little extra love right now.

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It’s been a long day, but all in all it’s been a good day.  We can now look forward to healing and getting back to our lives without the big, dark cancer cloud hanging overhead.  Thanks to everyone who’s been so supportive throughout this whole ordeal.  We love you sooo much.

It’s about 10 min to 9:00pm and I just figured out that there is an extra cat5 high speed internet port in our room, so I thought I’d get on my laptop and give a more complete update about the days events.  Twitter is nice, but it doesn’t reach as many people and there’s no room for detail.   – Quick sidenote about the Encouragement Page before I move on.  Of all the days for it to happen, the Anti-spam picture functionality failed yesterday on our web site.  This prevented many of you from posting yesterday and I apologize for that.  I was able to replace it with a simple math question as the anti-spam measure, but it seems like those nasty spam bots are sly enough to get past it once in a while and get a spam posting up there.  I’ll try to get rid of them as quickly as I can, but I had to decide to either take it down totally to prevent spam or keep it up and deal with the spam for now.  I opted for keeping it up there.  I know Monica loves to see new posts and it really makes a difference in keeping her spirits up.  Hopefully I’ll get a chance in the near future to fix the “weird letter” anti spam measure and put things back to normal.

Well, my eyes are feeling droopy and it’s only 9:00pm now.  Monica is half awake but enjoying the movie “Sweet Home Alabama” that a friend brought for her to watch.  Chick flicks and chocolate are two of Monica’s favorite home spun remedies. 🙂 

Anyways, for those that are interested in the days detailed events, here’s my attempt and recalling them.  Part 1:
The day started early.  We got to the hospital at 5:30am and saw the nurse right away.  They took us to a double room that we shared with an older lady who was sleeping.  We heard that this new building at the hospital had a lot of single new rooms so we were a bit disappointed that she would be sharing one, but at least it was a nice room and it had a little bench/bed (not to be mistaken with a sofa bed… definitely more like a bench…) By 6:30am my grandma and aunt joined us to keep us some company and it served to be a good distraction for both Monica and I as we anxiously waited for pre-op.  We didn’t expect for the doctor to see Monica until 7:30am, but they called her in early at 7:00am.  “Great,” I thought.  We were ahead of schedule and I couldn’t wait to see Monica out of the OR with the surgery behind her.  It turns out that thought was premature….

As the nurse aids wheeled her away my grandma, aunt, and I decided to go across the street to Marie Calendar’s for breakfast.  On our way out I saw one of the doctors I know from my medical billing company job rushing toward the hospital building in a fast paced, focused stride.  I said hello to him and he gave me a big hug and said he was on his way to see Monica to pray for her before she went in to surgery.  He’s never even met Monica!  The day’s blessings had begun.  We let him go so he could get to her before she was sedated, and we headed for breakfast.

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  Well, I finally did it.   I purchased a wig.  It might sound a little strange, but I was fine being bald.  It’s the awkward stages of growing it out that frighten me.  So here it is… LONG and Blonde! 

 I had blood drawn today for surgery.  Nothing to report, just a step closer to the big day.  Anyway, Sol and I are going out tonight.  The last free night we have before surgery.   Thank you, Catt for babysitting!  🙂  We really appreciate it! 

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