Amy Barnes - Fighting the hard fight, my way!
07/25/08:
For me today is very hard for it is the 25th of the month, the same date that Amy passed away one month ago. It feels like Amy has been gone for 6 months. Every day that passes seems so long but yet I know that Amy would not of taken her last breath unless she felt we all would be okay. I truely believe that!!
I am pleased to tell everyone that there is a new licenced driver in the state of Minnesota! Yes Zach passed his test and I know that Amy is so proud! I, as hard at is was, let him take the car to work tonight. He's a great driver but I can't help but feel nervous about giving him the keys to the van. Hopefully in the near future I can get him a small car that gets better mileage. As I said last night, my plans are to keep Amy's web page up. I thought it would be a good way of keeping everyone updated with everything involving the boys. Amy was so proud of our boys and I know she would like me to keep you informed.
Mark
07/24/08:
I have not updated the web site in some time but just wanted to take this time to let everyone know I am keeping Amy's web page open! I have read and have had people tell me they would like Amy's web page
to continue. I can not think of a better way to continue a part of Amy that so many people have followed for so long. Thanks to all for the continued thoughts and prayers for our entire family.
Mark
7/04/08:
It's 7:30 am on the 4th of July. We always spent the 4th at the lake but this year, along with holidays to come, just seems empty. Amy and I always had Amy's brother Tim and his family out to the lake and we would BBQ, go out for a pontoon ride and just have laughs. I know Amy's up in heaven saying....... CELEBRATE! I know I don't have to tell anyone the emptiness we are all feeling. Reading all of the entries that family, friends, and even people that never met Amy have left truely shows the love people have for Amy.
This is going to be a quiet 4th of July but in my heart Amy will be with me and our boys.
Thank you all for your continued support and love for our entire family!
Mark (Amy's Husband)
6/27/08:
As I sit here today reading all the messages that family, friends, and even people that have never met Amy have written I can not help but feel the impact that Amy has had on all of our lives. I have been truly blessed to have had Amy in my life. Amy has given me two very special sons that when I look at the I see Amy. We all will never be that same now that Amy is not "physically" with us but Amy will always be with us all in our hearts. Yesterday Amy's parents Roger & Debby, her brother Tim and I made the arrangements for Amy final resting place. I need not tell anyone how difficult that was but in some weird way I knew that Amy was there. I felt her watching over me making sure I made the right choices. I think Amy will be very happy with everything we did.
On a personal Note: I would like to thank everyone who has made Amy's life just a little easier. Amy always put others first and herself last. I truly am going to miss my "Amy Sarah" but I know she will always be with me, in my heart, at the right time I will be with Amy again. But until that time Amy has entrusted me to take care of our sons and continue raising as Amy would have. Thank you so much to everyone who cared for Amy!!
Message to Amy: I LOVE YOU AND MISS YOU!! Please guide me with the boys and give me little signals to let me know if I'm doing something wrong. You are and always will be my everything!!
Mark (Amy's husband)
6/25/08:
Before noon today, God called to heaven our beautiful daughter, wife, sister, niece and mother. To the famlies and many friends of Amy, thank you for loving her. Thank you for caring for her. Thank you for being there for her. And we thank God that she is now at peace.
We are now making plans for saying goodbye. While final plans are not confirmed, we are looking at Sunday, June 29th for the visitation at Gearhart Funeral Home in Coon Rapids and Monday, June 30th for the funeral at St. Timothy's in Blaine. Please be watching the newspaper for exact times.
Please join in celebrating Amy's life and to say goodbye to a most beautiful and courageous young woman.
The Lusk and Barnes Families
5/26/08: Im in love with another man and his name is Griffin!! This picture was taken when my best friend flew from VA when we got the bad news. He is my new godchild - what a darling.
Its the day before our Dream Foundation vacation to Orlando, FL. It is a much needed vacation considering that last night a tornado went right thru our street and got us pretty good. This was my week off of chemo so I just had to go in to get a checkup before the flight. Good thing I did because my platlets were extremely low - 50. So we headed down to the infusion center for a platlet transfusion. I get an extra week off of chemo next week so that will be nice.
I have been totally exhausted lately and forever trying to catch my breathe from a 30 ft distance. Its frustrating to say the least. At least I have a wonderful husband who is willing to push me all around Disneyworld!
3/24/08: I wasn't going to update my website so soon, but after reading all the guestbook entries, I figured that I needed to share what has transpired. To say that the past week and a half has been beyond hell would be an understatement. I felt pain that I never felt in my life and the worst part about it was that no one and no medication could ease it. I spent lots of time this past week watching my boys sleep - especially Cody because he is having a more difficult time. I smell their pillows and sweatshirrs and it sounds so weird, but it's almost soothing. I received LOTS AND LOTS of calls, texts, cards, etc. and please know that they all meant something to me, myself and my family. I received a beautiful visit from my best friend Charla and my new godchild, Griffin from VA and that was good medicine. Though we didn't talk much about the diagnosis, having her near me was medicine the doctor couldn't have ordered. She bought us matching rings that have our names etched on them and say "kindred spirits" - the perfect meaning for us because we are far more than friends. I took the boys and their friends to the Waterpark of America on Thursday with my friend Amanda - another secret angel of mine. And although her and I just sat around the room and chatted, I felt at ease and it was nice to know the boys were occupied if only for a little while.
We met for a 2nd opinion today and the meeting was very good. Though we know my cancer is no longer curable and having it in your spine is not a good sign either, Dr. Cheema has some plans for us. He needs to complete some tests first - a spinal tap and a mid and lower back MRI. He also stated that he wasn't entirely sure that the spots on my brain were cancer because they are so small. He didn't sound like he wanted to rush any kind of radiation until we know exactly what we are dealing with. We were there for 2 hours and I felt a sigh of relief when we left... He started me back on Femera which is the mainteance drug you usually take 5 years after breast cancer treatment. I took it for a year and a half and stopped it when we decided to try for a baby. In any case, I remain guarded in my feelings and it will take me some time to get back to each of you - but I will. Just know that each one of you brings a special light into my life...
3/14/08: For those of you who didn't read my husbands guestbook entry, our world was thrown upside down yesterday. All the hoping that we had that a little more radiation and chemo would send me on the trip back to health with the shattering news that the cancer had indeedly spread to my brain and the entire length of my back. Chemotherapy is no longer an option for me and they would only do radiation to the brain, nothing else. After hearing 3-4 months to live I never heard another word - the scream that was heard from me was not human. Mark took the reins yesterday and made all the difficult phone calls, he picked each kid up from school in the guidance counselors office and gave them the news before they seen me. Then it was a matter of holding them tight in my bed and saying how much I loved them and how sorry I was for having to leave them. They are my babies - my reason for fighting, for living and not only is my life shattered, but theirs as well. They did as well as can be expected with news like this, Cody had a more difficult time because he didn't want to cry and make me upset, but hegot it out later last night. For now I'm just trying to get by hour-by-hour until some of this is absorbed. Most of you know that from the very beginning I had been adament about not knowing a time frame. Now I'm just trying to deal with the emotions of knowing when I never wanted to know in the first place. So to say that I am very angry is an understatement. So this is more than I thought I could write, so I think that is enough for now...
3/11/08: Yes, I know - two days in a row!!! Don't faint. Just wanted to update on the progress of the day. I went to the support group and was delighted to see that the group is very small - less than 15 people, so it's very personal and they all knew I was coming and were very welcoming. There was a guest speaker today - a chinese doctor who was amazing and talked about the benefits of acupuncture and chinese herbs. Then, he used me to demonstrate his skills... he looked at my fingernails and told me that I was very stressed and depressed, he checked my pulse and watched me breathe and told me that my kidneys are weak due to recent kidney problems (remember that I almost went into kidney failure in December) and then squeezed my calf and ankle and said that I have a comprimised circulatory system (the lymph node involvement and lymphedema). It was truly crazy. In any case, I bought a bag of chinese barley from him and will attempt to make some soup.
I did my MRI this afternoon after a huge miscommunication about taking medication. I needed valium before I had the cage put over my head for an hour and a half!!!! The involement in the bones that Dr Vic is seeing must be towards the top of my spine becuz that is what they took pictures of, including the brain. We will find out the next step on Thursday.
As my friend, Amanda, was driving me home today we started to talk about the negative outcome of the situation and she said to me, "we don't need to go there until Thursday". Later as I was talking to Mark, he said, "let's not put the cart in front of the horse". So tonight that is what I'm going to go to bed with and let that carry me through the night....
3/10/08: For many of you wondering, I am home and doing well. I spent some much needed time in the hospital finally coming to terms with my diagnosis and what that means. After the pain from the radiation, I was taking lots of pills - much more than I ever needed because being asleep meant that I didn't have to think about the cancer and therefore didn't have to face my worst fear. It was only a matter of days before I took one too many pills - I knew that. But a phone message from a friend of mine whose husband died last year put my life in perspective. I heard the despair in her voice and my heart tore in two. I thought about my husband and kids and knew that for whatever time I have left, I don't want to hear their voices with the same pain as my friends. So, she doesn't know that she saved me that day two weeks ago - but she did. My experience at the hospital was theraputic for me and I got some much needed therapy. I am going to a support group tomorrow that is for breast cancer patients that have had some sort of metastis and then I see a therapist on Wednesday. She had met with me numerous times in the hospital.
Now that I'm home I'm just relishing in those little things I missed - like the smell of the kids when they kiss me good night and the feel of the cats fur. It has been a little of a challenge since I've been home though. A friend of mine from high school was killed Saturday, another friend who is suffering from brain cancer is losing his will to fight and my son, Zachary, just experienced his first death of a classmate who committed suicide. All of that topped off with a phone call this evening from the doctor - never good - who had the results from Fridays PET scan. All of the previous tumors are smaller, not gone, but smaller. But the one spot that had been showing on my lung has gotten larger, though I didn't think to ask how much. Also there is some involvement showing in my bones. I'm only assuming that it's my back because he asked me if I was having any back pain - which I'm not. I'm now waiting for the clinic to set up an MRI and hopefully we can get those results when we meet with Dr. Vic on Thursday. Interestingly enough, Mark and I meet with a nurse and social worker today regarding hospice. There was some miscommunication from the hospitsl and they thought that I was actually signing up for hospice. So after that initial shock, I was able to ask many questions that I had regarding the process, if nothing else than to ease my mind.
In any case, I'm attempting to keep busy and not worry about what I can't control. Having cancer makes you feel so vulnerable because no matter how hard you fight, in the end it is out of your control...
2/20/2008: Yes, it's me! I am finally feeling well enough to do some things and lots of people have made comments that I hadn't updated the website. I was pretty burnt from radiation. Radiation was definetely not kind to me this time. I can honestly say that I wanted to give up that Saturday that my mom was over. In fact I think I even told my mom that I wanted to throw in the towel. Probably one of the lowest points I've had since this began years ago. It's difficult not to dwell on and wonder "why" - "why me". I don't think I'll ever have an answer to that so I'm trying to focus on other things. The kids were amazing through everything - in fact they even changed my dressings! I know it was difficult for the whole house. For those of you that I did talk with during the past months know how much time I spent in bed. There was no interaction with anyone. For awhile it was my husband or my mom that helped me in the shower. My friend Amanda was a saint... I can't count how many times I called her to ask for help getting the boys to and from and making sure that they were fed. You know kids - mine won't eat unless we make it or remind them to eat! My mom ---- what can I say... definetely my angel. I know how hard it was for her to see me like I was. Who could ask for a better mom???
Things at home are getting back to normal. I even made dinner two nights in a row!!! Too b
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