Scripts & Scraps from a Survivor

I’m sure most of you know by now, but Debbie passed away last week.  She spent the last days surrounded by family and friends.  She fought courageously to the end for her kids, showing the stubborn determination that kept her battling for five years. 

We miss her terribly, but take comfort in the knowledge that she has gone to a better place.  A place where she is no longer in pain. 

We are extremely thankful for the support of friends and family.  The outpouring of love and compassion from across the country has shown us the incredible impact Debbie made where ever she went.   We would like to thank you all for the cards, flowers, notes, food, calls, prayers and all the expressions of sympathy and comfort after the passing of our beloved wife, mother and daughter.

Mike, Matt, Mari, Nick, Judi and Don.

Miles Funeral Home

On Friday, I had my CT scan to confirm that my tumor markers were correct. They had gone down three months in a row but since my liver enzymes have been out of whack, there was some concern that it may have gone to my liver.  After waiting all weekend, we found out that my organs are STILL CLEAR so I still have bone only disease!!  I feel so blessed and so lucky that after 5.5 years of fighting stage IV breast cancer that my results are still showing that.  I was so relieved when I got the news but also shocked because I had convinced myself over the weekend that I was going to get bad news. Trust me in that, you didn’t want to be ANYWHERE near me this past weekend! LOL To say I was edgy would be the understatement of the year! LOL:)

 As I had mentioned I feel so blessed in the fact that the chemo is working. I know how lucky I am and I am so grateful every day.  I decided at the end of ‘08, that this was going to be my year for remission. I’ve always had surviving as a goal but never remission - it always seemed like too much to ask for.  I feel like I spent ‘08 finding out what wasn’t going to work (stem cell, living in IA, etc) and now that I’ve figured that out, I can now focus on what WILL work.

I also thinking moving back to MA to be with my family is one of the BEST treatments I could have.  There is so much laughter in my life right now.  Leave it to my crazy, Italian family to make me laugh! LOL :)  I told the kids my plan for ‘09 and they spent a day in December putting together a list for me on how I was going to get better.  The list is adorable and I have a copy of it in my planner and on the wall in our bedroom to remind me every day!  The best thing they added to the list was hugs and kisses! :)  Mari has been a bit of a drill sargeant with the list - when she gets home from school, she immediately asks me how many fruits and vegetables I’ve eaten that day (the goal is 9).  She has taken this remission thing VERY seriously.

I’ve also gotten back into scrapbooking. I’m taking a class a BPS called Get Organized and Be Inspired and scrapbooking has become fun again. I can actually locate what I need so I can now do a layout in about 30 minutes - part of the problem I had before was searching for a particular thing (which kind of takes the fun out of creating). So far in ‘09, I have finished a ton of projects (ok…3 mini books - that’s a ton for me! LOL ) and have done 8 12×12 pages.  I tried to post pics but I can’t get them small enough so…you’ll have to wait for another day for those.  I’m actually wondering if I can link this blog to flickr to post them. If you know, can you email me or leave a comment. There’s gotta be an easier way to do this.

I was really missing everyone from IA and then I got an invite to Facebook and well…..it’s almost like being there now. I kind of thought I was too old for facebook but there is a TON of moms on there and I can now keep up with everyone instead of emailing everyone individually.  The only downside with it is I’m spending more time on there than I should be! LOL It’s kind of addictive.

 Life is GOOD here.  I start back on chemo on Thursday. I think it will be easier to deal with the side effects now that I know it’s working. They took me off on Dec. 17th to start radiation and then we were waiting to find out if I was going to have my back cemented (I know….it’s amazing what I’ll do, right???) Since they haven’t made a decision yet, I’ve asked to restart chemo as I feel like it’s been too long off (although I have enjoyed the increased energy). Crazy when someone is ASKING for chemo, right??? LOL:)  That’s me, the crazy one!

Sorry I’ve been so bad about blogging. We had to update the software and when we did, we lost everything so it’s taken a while to get everything back up and running but we should be good now.  I still have to make it look pretty but….it’s kind of low on my list so…hopefully you just enjoy reading it and maybe some pictures when I figure that out.

Hope everyone is doing well and has had a fantastic start to ‘09!

We updated the blog software and lost everything. It’s taken us weeks to get it back but…it’s back.

 I’ll update soon but I just wanted everyone to know that LIFE IS GOOD!! A few rough months after the move but I’m back now!! LOL

Thanks for all the emails to make sure I was OK! You guys are the best!!

Ok…after much peer pressure…here it is. MY blog!! I’m still too sure about this? I don’t think my life is THAT interesting for others to read but I’ll give it a try.

So…here’s a bit about me – I’m a business owner, a wife, a mom, a scrapbooker and a survivor. I now devote a lot of time and energy to educating other women on the fact that breast cancer CAN and DOES happen even to those of us without a family history.

So today is speech day and I’m terrified. Not just like a little bit of butterflies but seriously terrified. I was up until 1 am this morning reading and it and rehearsing. If you know me, I think you’d realize how funny this is. I’m usually VERY outgoing and can talk to just about anyone/anything but get me in front of the class and UGH! Junior High ALL over again!!! But I MUST do it…I made the commitment!!

Want to read it?? Here it is:

First let me start by thanking you Rhonda for setting up this event to raise awareness and also to you Dr. Behrens for giving us the information we need and providing HOPE to us. And thanks to all of you out there that gave up a Sunday afternoon to raise money for such a great cause.

Every survivor I’ve met has a story and like them, I have one as well. On September 15^th, 2003, my life changed. At approximately 3 pm in the afternoon, I got a call from Pam at Katzman to tell me that my fear had come true. I had breast cancer. That moment is etched in my mind. I was 37 years old and had a 4 year old and 1 year old twins at that point and I couldn’t believe the news. I was healthy, thin and had a fairly healthy life style. How could this happen to me?

My story actually starts two months prior to that date. I found my lump by doing a self exam on July 2^nd. It took me two doctors and nine weeks to get a mammogram. Both doctors told me that there was no way it could be cancer and that I should go home and wait six months to see if there were any changes. I knew in my gut though that they were wrong. I demanded a mammogram. I can guarantee you that both of those doctors have the words, difficult and demanding on my chart but that’s fine because if I had listened to them, I wouldn’t be here today.

I learned a lot about mammograms, I did not know that when they ask for more pictures, that it’s a bad sign or when they schedule an ultra sound for the very next morning, that something is probably wrong but…..I did see the radiologists face during that ultrasound and I demanded to know what was wrong. She told me it looked like cancer and to thank her for telling me, I fainted on her!!

I left Des Moines to seek treatment at the University of Iowa. I was told I found it early and I would be fine after surgery and chemo. Unfortunately, that was not true in my case. Within 3 months of ending chemo, I was having difficulty walking and picking up my children so after much complaining, they gave into doing a MRI and a 10 cm tumor was found in my hip. I went to that appointment that day alone because they told that it was only muscular and that there was no way it could be cancer. It was hard telling my husband on the phone but I think that God knew what he was doing. I firmly believe that everything happens for a reason. That ride home from Iowa city gave me the time I needed to figure out my game plan. After a few calls, I started thinking. When I went into business, I developed a business plan – why would I not have a plan to beat cancer. I went home that night and wrote out my plan to beat cancer – my plan involves a new doctor, diet (no sugar or white products), journaling, scrapbooking and making every moment count. It included lots of research (as I’m sure Doctor Behrens will tell you) and lots of faith and hope.

I now live every day with bone mets but then again….I ONLY have bone mets. Although, many of you probably think I’m nuts right now by being happy that it’s ONLY in my bones – bone mets is not life threatening – it’s when it enters an organ that things get tricky. I’ve been on chemo three times in three years and I’m currently on chemo now. My tumor markers are back to normal and I’m so, so thankful to Dr. Behrens and my medical team for helping me to reach these results.

Has my life changed? Absolutely. Has it changed for the better? In many ways it has. Again, I’m a firm believer in everything happens for a reason. I feel that by getting cancer, God has a plan for me to get the word out to women. Yes, it can happen to you and yes, doing a monthly exam ESPECIALLY under the age of 40 is so very important. If I had waited until I was 40 to get my first mammogram, I wouldn’t be here right now.

So many things have come of this diagnosis. I have an incredible network – from my husband to my children, from my doctor to some people I have never met. My husband and I are closer because of all that we have gone through together. Our 9^th anniversary is in a few days and there is no way that we had any idea that this would be our life together but he has been there every step of the way – he’s cheered me up, cried with me and had to pick up the slack around the house. I couldn’t have asked for a better husband honey. My children have also been so important in my recovery. During the first round of chemo when I lost my hair, I had a really rough night when it was falling out so I took my four year old son Matthew aside and explained that I was losing my hair. I had kind of briefed him before on the fact that this would happen. I asked him if he was scared and he said, no Mommy it just means you are getting better. He’s so smart that one!! We had tons of hat parties with lots of laughter. The best was when my 1 year old son, Nicholas, put my wig on! I know that having cancer isn’t funny but you have to laugh or you’ll cry and we did a lot of laughing in my house and we still do.

My children continue to pray for me and help me and at first, I thought this is too much for a child to handle but I’ve realized recently that I’ve taught them compassion. A few weeks ago, we got great news in that my tumor markers have returned to normal and when I told the kids about the news, my four year old daughter Marianna said…Mommy, my prayers for you are making you better.

I had a feeling that I was sick and I had a feeling every time it comes back but I don’t have the feeling that I’m going to die from this. At least not right now. I know that every day I survive is one day to them closer to finding a cure.

So what is my message to you – First, trust your body and your gut. I’m not telling you not to listen to your doctor but I am telling you to push if you feel something is wrong. I have the perfect relationship with Dr. Behrens. He listens to me – I’m not always right but I’ve been more right than wrong with my symptoms. I think the best doctor is the one that listens, tells you your options and then respects your wishes. I personally have always chosen to be very aggressive. I know I can beat this.

I’m also telling you that -Yes, a cancer diagnosis is hard and if God forbid, it should happen to you, you CAN survive it. There is so much HOPE out there for breast cancer as well as other cancers and it is no longer a death sentence. And oh yes, please feel free to call me if you need ANYTHING!

I’d like to also take this opportunity to tell you about two other survivors and what they are doing. Glenna was diagnosed while she was pregnant and has created a poster for OB/GYN offices so that woman are aware that it is possible during pregnancy especially with all that estrogen in your system. The posters are available for a $30 donation to Komen. If anyone is interested in getting more information on what she does, please let me know. Also, Kathy is getting information out about the sister study. I don’t have any sisters but if you are a survivor and do have a sister, please let me know so I can get you information.

In closing, I’d like to read you a letter that I wrote to my daughter a year after diagnosis. I wrote it about a year after diagnosis and put it on a scrapbook page, it sums up my feelings at the time:

 

My Dearest Mari-

It’s taken me a year to put my thoughts down on paper for you.. I was diagnosed with breast cancer on September 15, 2003 and although I was upset that day, the worst day for me was the following morning when I woke up at 6:00 am and my first thought was that I had passed on an increased risk to you.

Some day when you are a Mommy you’ll find that you are more afraid of things happening to your children than yourself. I knew I could handle any challenges that came my way and I know you can too but the thought that you might have to because of me was so upsetting.

I want you to know all the good that has come out of my diagnosis and yes, there has been so much that I would have never known if I wasn’t diagnosed. In the past year and a half through all that this family has gone through, we have had a tremendous amount of support from others. Some we expected but so many others have rushed to our side and we never anticipated that. We’ve heard from old friends who heard the news through the grapevine and gotten back in touch as well as family and even family members of some of our friends. We’ve also received support from our church, our neighbors, my online scrapbook groups and even clerks at the insurance company. The response has been truly overwhelming. We feel truly blessed by everyone who has helped us and we know that God’s hand has been in this every step of the way.

I have learned so much by going through this journey. I have learned that people are good and are so caring if you give them the chance. I have learned that HOPE is one of the best gifts you can ever receive. I have learned that being a MOM is the best job I have ever had and that just by reading you and your brothers a book or coloring with you, my day seems to be so much brighter. I have learned that I can conquer things I never thought possible before. I have learned to live each day to the fullest and not to put things off. I have learned that my family is the most important thing to me and that when all else fails, it’s my family that will get me through it.

I hope you never have to learn all these things the way I did but I know if you should have to go through this when you are older, that you will prevail.

You are truly my daughter in so many ways as we are so alike. You are outgoing, funny, compassionate and no matter what your brothers are doing, you jump right in determined to keep up with them. You have a spirit for living life that I hope you never lose.

As I continue to fight the battle to overcome breast cancer, I keep in mind all the good that has come out of it and I truly fight every day because of you, your brothers and your daddy.

I love you from the bottom of my heart. You are so precious to me in so many ways.

Love,

Mommy

 

 

Thank you again for allowing me to share my story. If you get anything from my story, please know that there is nothing like HOPE and as Dr. Love has often said….”if there is just one person that has survived the odds, there is nothing stopping you from being the second!”

So, so what do you think? Would you be yawning during this one???

Here are the pages with the letter to Mari on it for those of you who scrapbook out there:

 

 

 

Ok…enough playing today. I gotta go get ready to speak.

 

Have a great day and remember “Those that say it cannot be done should not interrupt the person doing it.” (Chinese proverb)