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Amy's Amazing Story

Posted Apr 12 2009 12:39am

I would like to introduce you to an amazing woman, Amy. Amy and I met online a while back when she emailed me about a product for her son, Philip. It was then that I learned about Philip who has been bravely fighting for his life since he was a baby. When Philip was three weeks old he was flown to Arnold Palmer. He had a large arachnoid cyst and needed a brain operation. At the age of 6 months the cyst came back and he once again needed a brain operation. Philip has had a total of 15 brain operations to date. He also has had a stroke and over 20 Orthopedic operations. To read more about Philip please visit his CaringBridge Page by clicking HERE

Amy has also asked that I ask all of you to pray for Philip's upcoming surgery to be succesful. He is having a major brain and spine operation May 12th. This will be Philip's 17th brain operation and 3rd spine operation. He has had a stroke on right side and now his left side is losing strength.


Amy has dedicated herself to her family and recently her family was given another battle. Please read Amy's story and leave a comment. If you are a member of Spirit Jump I have sent out an email asking for Spirit Jumps for both Amy and Philip. If you would like to give a Spirit Jump to this family please email spiritjumper@spiritjump.com

You can also visit Amy's blog @ Our Daily Blessings







My name is Amy. I am a 40 year old mother of 4. About a year ago I started to just not feel well. No matter what I did or tried I just did not feel like myself. My first thought was it was due to my weight loss. I had weighed about 223 pounds and been on a pretty strict form of Low carb and gotten down to 136. Instead of feeling better, I felt awful.

In Jan 2008, I decided to go visit my family doctor and explain my concerns with her. She decided to run some basic test , which all turned out "okay". She decided to send me to a rheumatologist to have them run some more advanced testing. The next day I received a phone call from the new DR office and was told their first available appointment was in 6 weeks. While I was disappointed in having to wait for so many weeks, I figured it would be well worth the wait to finally get some answers.

I guess it is never a good thing to place all your hopes on a DR you have never met before. I went to the appt and within 5 minutes she had me diagnosis and pushing me out the door. I left feeling more discouraged then before I went.

I brought the original lab work results from my Family DR to the rheumatologist appt. I explained to her that I was overly tired. That I was cold all the time and had no energy. I also told her I had severe bone pain to the point I was taking 4 advil every 4 to 6 hrs most days. I told her I had a thyroid problem that was very controlled with meds and that my check up with endocrinologist showed my thyroid level was fine .

The DR asked me if I happen to have any stress in my life. She noted that I was a mom to 4 children and that had to be very stressful. I kind of shrugged and said I think it is more of a blessing then stressful. I then shared with her that my oldest son did have some serious medical issues which included over 15 brain operations and a stroke. I told her that while this was stressful it was something that our family had been dealing with for a long time and I felt like my stress level was really pretty well balanced. This was all she needed to hear. She decided right then she wanted me to take sleep medication and a antidepressant. I was a little taken back..okay a lot. I told her that I really felt like there could be something medically wrong . She said she was sure I had and sent me off with the scripts and told me she would see me back in a month. I left feeling defeated and wondering if maybe it was all in mind.

Over the next few months I spent some time reading information on fibromyalgia. I wanted to see if there was a blood test or scan that could show if you have fibromyalgia The more I read the more I learned that it can be hard diagnosis and even harder to treat.

Over the next few months I tried to fake it till I could make it. I kept taking my daily advil and resting on the harder days. I would sleep with my heating pad...sweat all day...things just seem to get worse . NO matter what I did I just felt awful.

In September 2008 I decided I needed to go back to my family DR . My bones hurt so bad I could not even get out of bed some days. I also had developed a painful condition with my feet. It was so odd. They would feel numb but at the same time I had needle pains in them. Sometimes it was hard to walk on them .I explained to her what the rheumatologist had said. She suggested I go back and see my endocrinologist . She thought maybe there was a sugar issue.

My endocrinologist took some labs that showed my sugars to be perfect and once again my thyroid level was perfect on my current level of medication. The endocrinologist wanted me to see a neurologist for a follow up to the pain in my feet. They made me a appt for the following month for a appt and testing. Little did I know this new appointment would end up saving my life.

October 2008 I started having a odd feeling in my left side. I ended up doubled over and was rushed to the ER. It was found that I had a large mass on my left ovary. It would need to be removed immediately. I ended up losing my left ovary and my left tube. I can remember feeling like such a bad mom because it was Halloween and I could not go trick or treat with Cole my 4 year old. I promised myself that I would get better and be ready to enjoy the holidays. My path report came back showing pre cancer cells. It was a relief to have it removed and be able to move on and put it all behind me.

A few weeks later I had my scheduled appt with the neurologist to follow up with my foot pain. He asked me a bunch of medical questions . He asked me how I was feeling and actually listened to my answers. He decided to run some medical test including a lyme test. It was planned for me to return the Wed before Thanksgiving for a EMG of both my feet and to review my blood work.

November 2008...I go for my EMG testing . He said all the blood work that had come back was fine and we continued on with the EMG. As he is doing my test the nurse knocked on the door and brings in some blood work. He shakes his head and I think...wow that person must be getting bad news. Sure enough it was my blood work. He explained to me that while my EMG was normal I did have two blood test that concerned him. He asked if I happen to have any lumps.. I knew then I could be in trouble. I had a appointment with my Family DR the following week because I had a lymph node in my neck that was swollen and had not gone away. He looked at it and then said we need to talk.

He said I needed to see a surgeon and a oncologist within the next week. He wanted a surgeon to remove what he thought was a cyst. He wanted the oncologist to go over my lab work.
From that point on my life changed in ways I never expected.

My first reality lesson was when my caller ID said Cancer center. Wow. Then I had to actually go and walk into the office marked cancer center. I sat there and looked around. I will never forget that "feeling". I looked and wondered if the people there were scared. I wondered what was wrong with them. And I wondered if they would live. I just sat there and felt really bad for the people who were "really" there for cancer. As for me I was there for some blood work mistake. I met with the oncologist who seemed nice enough. He explained to me that I did have some blood work that was abnormal and could indicate cancer but he said he could assure me that it was a fluke. He asked me to have a bunch of blood work done and return to see him after I had my "cyst" removed.

The oncologist wanted me to get a mammogram. It was my first one. I felt empowered getting It done. Taking charge of my health. Of course my first one turned out to be exciting. They found something on my right breast and had me stay for a second one and then a ultrasound. They said they would send the results to my oncologist. The oncologist wanted me to have a MRI done after I healed from my cyst removal.

The following day I saw the surgeon. She was wonderful. She explained to me that we needed to remove the "cyst" . She wanted to me to have a MRI so she could have a mapping of where it was at. WE decided to go ahead and plan the surgery for right after Christmas. I left with a plan of action and was relived I would be able to have the holidays free of operations.

My MRI was scheduled for Dec 4th . A few days before that I noticed that I had a second lymph node. I kind of half joked that there was a baby one now. But within a few days I found I could not swallow easy and my neck was swollen with two very large nodes. The day I had my MRI the radiologist asked to speak to me after my scan. He said there was a issue that needed to be addressed. His first question was had I ever smoked. I said no , why? While doing my scan they happen to see some nodules on my chest wall that concerned them. He said he would be putting a call into the ordering Dr to let them know. I nodded and said thank you. I walked to the bathroom and sat down and cried. I panicked . I called my mom and my MIL and cried hysterical. For the first time I was scared. Really scared. I could not believe all this was happening.

That afternoon my Surgeon's office called and asked me to come in first thing Monday morning. What a wonderful way to spend a weekend...worried too death. She examined my neck and was shocked at the second one that had grown so large. She wanted to put me on a very strong antibiotic and move up my surgery date. She explained that she was not sure she would be able to remove the whole nodule. She said they were both very large and very deep. I had a very unpleasant test done on her office where they put a tube down to look at my vocal cords. I asked her if she was worried about the cyst and she said well...I still feel pretty confident they are cyst but we will not know until we get them out. She decided to do a cell biopsy and send them off to a lab stat. She also decided to have a pathologist in the OR so she has a better idea of what needed to be done. I look back and think..I should of known then.

It was decided we would do a PET scan to follow up on everything after we got the "cyst " out.
Dec 10th I went into the hospital for removal of the cyst and left in really and shape. When I woke up the first thing I realized was I had major pain in my neck and drains and a large bandage wrapped very tight. I whispered to my DH what did they find. He said we needed to wait for the results. I noticed it seemed that no one would look me in the eyes. For days I had a drain and bandages and the most incredible pain I could ever imagine. The pathology results were due to be back the following Monday. I found myself feeling like Monday would never come. I also noticed my DH seemed very distant. I figured it was just a lot of stress.

The Following Monday Jim was on his way to get me for my follow up appt and drain check. The phone rang and it was the nurse. She said she wanted to let me know that I could wait till the following day to come in because they were still waiting on the form and staging of cancer and they hated for me to try to get up and come in when I was in so much pain when the results were not back. She then said. How is your DH doing the Dr was very concerned when she came back to the office and had to tell him you had cancer when he was alone.

So I had cancer.

I called my DH and asked him is he thought we should talk about my cancer diagnosis. He came straight home and said he was sorry. He explained to me that he could not look at me and tell me when we did not know what kind or stage. He also said the DR said she knew I needed to rest from the aggressive surgery and they agreed to wait to tell me when the path came back. Someone forgot to tell the nurse.

I have been asked if I was upset with Jim for lying to me. How could I be mad. He gave me a few more days that I did not know I had cancer. He took care of me knowing that in a few days my whole world would change. He did it out of love.

For days we waited for the final report. It was then decided it needed to be sent to Mayo clinic. The DR saw me daily for weeks. I had to have the drain put back in days before Christmas. The Dr told me the pathologist told her that the whole nodules had to come out. He was sure if any was left it would kill me. She said she was so deep in my neck she had to get on the table. That explained the pain factor.

During this time period the DR noticed a few bumps on my face that had to be tested for MRSA. I ended up with 8 band aides on my face. I then had to go back in a antibiotic that was known to cause CDIFF. So that required some specialized testing every other day. It really felt like I was falling a part. And in some ways I was.

Christmas eve I got the call that the same infection that was on my face tested in my lymph node at MAYO clinic. A course of 12 weeks of strong antibiotics and a Infectious disease Dr was added to the team.

I finally got the diagnosis of NON Hodgkin's stage 2. I also had a secondary infection that needed to be treated. During this time period it was found that the original symptoms I had when I saw the rumetolgist was due to a underlying auto immune disease. .

I am doing a course of once a week chemo and steroids. I just had my second PET scan yesterday to check how the treatment is working. I need to see if the nodules on my chest wall are stable. MY new treatment plan will be based on the scan results. I have a MRI in June of my breast with a follow up for a biopsy.

Yesterday when I had my PET scan done , the tech happen to be getting my history. He said wow you have a lot of lumps in your body. I have to admit that was really hard to hear. I sure hope the new PET shows less "lumps" then last time.

I wish I could come here and say I am sure everything is going to be okay. But I have to admit that I am scared some days . This is all still new to me. Some days it feels like a bad dream. I find myself wondering how things turned out this way. How did I turn into one of those patients in the waiting room of the cancer center? But most days I feel strong. I am digging deep and finding a new stronger me.

I hope Meaghan will invite me back when I can share the great news that I am cancer free.

God is GOOD .
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