Just a quick update! Dr. Hantel just called me. Believe me, I think we all had given up a little hope. I had my PET scan yesterday. In "stupid / naive terms" this is a radioactive dye that is injected and you then sit for 90 minutes to let it soak in. After the 90 minutes, you are put through a scan that will then light up if there is cancer growing somewhere. It also has a CT portion of the scan, that will not show as much, but the Dr. can look at that as well. My friend Christine is queen of PET's so she could explain this WAY better then I just did!
So what we found out is the PET scan only lit up on my collar bone lymph node. That is not good, because it does signify a recurrence, but the good news is, it did not light up ANYWHERE ELSE!! Not even on the chest wall, which was biopsied and confirmed the nightmare that my cancer has returned. What this means is we have caught this early and there is either not enough or it is too small for the PET to pick it up. The CT portion of the test shows a couple 2-3 mm nodules on my right lung base. We know that at least one of these nodules was there in May. Dr. Hantel has explained that they are not big enough to test nor are they big enough to show up on the PET. This will be a base-line moving forward and a "watch area". Dr. Hantel has spoken with my surgeon at Northwestern who will present this to the Northwestern Tumor board next week to see if there is a surgery or anything that they think I qualify for. He has also spoken with the Oncologist, Dr. Phillips, at University of Chicago, where I am switching to so I can be closer to home to see if I qualify for any clinical trials now that I have a recurrence. So bad news is I have cancer and it is back! Good news, I trusted my instinct that something was wrong and I caught this bad boy early!!! So Dr. Hantel's instructions was to go to Disney and let them do their homework so that is exactly what we shall do!
Thank you so much for the prayers but please keep them coming, we have a long road ahead still!
Love to all!
Amber
Friday, August 30, 2013
Wednesday, August 28, 2013
Round 2 - Watch out stupid cancer!!
Well, just a week ago, I stated my fear that I was afraid "SOMEDAY" I would have to relive. Never in my worst nightmares did I think that meant 2 days from my last post! I have been a little shocked, mad, sad to update so did it through Facebook which a lot of you have probably seen.
So the story goes: 2 weeks ago I decided I had better establish myself with a general doctor. I am not sick anymore and I really should have one so in the rare case that I come down with something, I can go to someone who knows my history and not to the urgent care because that was our norm. So I made an appointment for last Monday. I also had noticed about 2 weeks ago that I had small bumps that looked either like mosquito bites or sun poisoning over and around my right breast (previous cancer breast). I really thought nothing of the bumps because it was likely they were mosquito bites from being at the lake or sun poisoning since I am rocking a summer tan (not really, but more sun then I have had since I life guarded in high school). Knowing my skin on that side is sensitive due to radiation, I was not concerned. So when I went to the general doctor last Monday I had her take a look. She too said it looked like more of a reaction then anything cancer related and I left with instructions to use a cortisone cream. I did that through Thursday and noticed it was not getting any better and in fact, I was starting to see a couple of more. At that point, I called my breast surgeon and they wanted to see me Friday. Since my surgeon is through Northwestern, I see a resident and then my doctor. The resident comes in and takes a look and says she believes they are bites and as she is leaving to get the doctor says to me, I don't think you need to worry anything about this being a cancer. If it were the breast cancer, it would grow on your scar from your mastectomy or your implant surgery scar. I actually raised my hands and said "YAY" in my happy voice....Some don't know this voice, I only use it when getting good news from Doctors....Totally a fake "yay" until I can get to the car and pump some good tunes and do a happy dance after getting good news. So next comes Dr. Bethke. He is always reserve and since a majority of the time I see him, I have been sleeping, I am not good at reading him. He looks and keeps saying "okay". He decides he wants to biopsy one to be sure it isn't anything. He did what is called a punch biopsy. It did not hurt since I do not have a lot of feeling in the breast region. He then had me sit up and did the ritual of feeling my neck and collar bone and arm pit region for enlarged lymph nodes. "Okay, Okay'' was really all I heard and then "take a seat Amber''....Oh here we go. My response was "when will I learn to not travel alone to these appointments!" I thought it was bug bites or I would have come prepared with Don! He told me he was very concerned that my cancer was back due to an enlarged lymph node in my collar bone region.
I leave there super confused and pissed off! Okay, I am concerned with my health, well-being and future, but BEFORE DISNEY!!!??? Are you kidding me?! I was so upset. All of this planning and now I am going back to chemo and if I make it through the chemo, it takes months to re-coop, I can not believe you cancer! How dare you take my family vacation away! Since all that know me, know I will not sit back and just wait. Monday morning I was on the phone with my oncologist Dr. Hantel. He squeezes me in for 4:30 yesterday.
I meet with Dr. Hantel yesterday and the plan is still somewhat in the air. What we do know is this is Triple Negative breast cancer showing its ugly face again. Several times I have explained triple negative has a high chance of recurrence either locally (chest or skin) regionally (lymph nodes) or distantly (metastasised to other organs). So my cancer has decided to show in my chest wall / skin and hopefully that is it. I did blood work today and will have my PET scan tomorrow. The PET will light up if cancer is located anywhere else in my body. Right now I need strong prayers that this has not traveled any further then a local or more then likely regional (since my collar bone lymph node was enlarged) recurrence. Dr. Hantel did agree that there was no reason to put off Disney. He needs to converse with several doctors to come up with the perfect regiment of chemo for me when I return.
So tomorrow I will go through a dreaded scan and we will then leave Monday for Disney and then return for chemo. We have no idea how long or how often for chemo just yet. He has given me some drugs that they may include, but no ideas how often or the side effects. Chemo may be followed by another surgery, but he is not sure. He explained that cutting out skin is a major surgery to have the cancer hiding and reoccurring again. So we are not sure this might be a long term battle for me to stay ahead of the cancer. Hopefully not! Hopefully it remembers how rude and uninviting I was to it the first time. It will not stay! I have 2 kids that need me daily and I refuse to be taken from them. I will not go down without a fight! You all know that! I hate to bring the crazy out but I will!
I think it was somewhat of an easier blow the 2nd time around. I was very educated about the likely hood of the return so I kind of was like "aha, this is when you choose to show back up". So bring on another long and scary fight. Please walk with us and keep us in your thoughts and prayers! We have not told Justin yet if you are wondering. Only because we are not sure to what extent I will have effects. We will tell him something, we just don't know what yet so pray for that little man. He is such a caring child, this will be harder for me then hearing the diagnoses myself.
Lots of Love to all!
Amber
So the story goes: 2 weeks ago I decided I had better establish myself with a general doctor. I am not sick anymore and I really should have one so in the rare case that I come down with something, I can go to someone who knows my history and not to the urgent care because that was our norm. So I made an appointment for last Monday. I also had noticed about 2 weeks ago that I had small bumps that looked either like mosquito bites or sun poisoning over and around my right breast (previous cancer breast). I really thought nothing of the bumps because it was likely they were mosquito bites from being at the lake or sun poisoning since I am rocking a summer tan (not really, but more sun then I have had since I life guarded in high school). Knowing my skin on that side is sensitive due to radiation, I was not concerned. So when I went to the general doctor last Monday I had her take a look. She too said it looked like more of a reaction then anything cancer related and I left with instructions to use a cortisone cream. I did that through Thursday and noticed it was not getting any better and in fact, I was starting to see a couple of more. At that point, I called my breast surgeon and they wanted to see me Friday. Since my surgeon is through Northwestern, I see a resident and then my doctor. The resident comes in and takes a look and says she believes they are bites and as she is leaving to get the doctor says to me, I don't think you need to worry anything about this being a cancer. If it were the breast cancer, it would grow on your scar from your mastectomy or your implant surgery scar. I actually raised my hands and said "YAY" in my happy voice....Some don't know this voice, I only use it when getting good news from Doctors....Totally a fake "yay" until I can get to the car and pump some good tunes and do a happy dance after getting good news. So next comes Dr. Bethke. He is always reserve and since a majority of the time I see him, I have been sleeping, I am not good at reading him. He looks and keeps saying "okay". He decides he wants to biopsy one to be sure it isn't anything. He did what is called a punch biopsy. It did not hurt since I do not have a lot of feeling in the breast region. He then had me sit up and did the ritual of feeling my neck and collar bone and arm pit region for enlarged lymph nodes. "Okay, Okay'' was really all I heard and then "take a seat Amber''....Oh here we go. My response was "when will I learn to not travel alone to these appointments!" I thought it was bug bites or I would have come prepared with Don! He told me he was very concerned that my cancer was back due to an enlarged lymph node in my collar bone region.
I leave there super confused and pissed off! Okay, I am concerned with my health, well-being and future, but BEFORE DISNEY!!!??? Are you kidding me?! I was so upset. All of this planning and now I am going back to chemo and if I make it through the chemo, it takes months to re-coop, I can not believe you cancer! How dare you take my family vacation away! Since all that know me, know I will not sit back and just wait. Monday morning I was on the phone with my oncologist Dr. Hantel. He squeezes me in for 4:30 yesterday.
I meet with Dr. Hantel yesterday and the plan is still somewhat in the air. What we do know is this is Triple Negative breast cancer showing its ugly face again. Several times I have explained triple negative has a high chance of recurrence either locally (chest or skin) regionally (lymph nodes) or distantly (metastasised to other organs). So my cancer has decided to show in my chest wall / skin and hopefully that is it. I did blood work today and will have my PET scan tomorrow. The PET will light up if cancer is located anywhere else in my body. Right now I need strong prayers that this has not traveled any further then a local or more then likely regional (since my collar bone lymph node was enlarged) recurrence. Dr. Hantel did agree that there was no reason to put off Disney. He needs to converse with several doctors to come up with the perfect regiment of chemo for me when I return.
So tomorrow I will go through a dreaded scan and we will then leave Monday for Disney and then return for chemo. We have no idea how long or how often for chemo just yet. He has given me some drugs that they may include, but no ideas how often or the side effects. Chemo may be followed by another surgery, but he is not sure. He explained that cutting out skin is a major surgery to have the cancer hiding and reoccurring again. So we are not sure this might be a long term battle for me to stay ahead of the cancer. Hopefully not! Hopefully it remembers how rude and uninviting I was to it the first time. It will not stay! I have 2 kids that need me daily and I refuse to be taken from them. I will not go down without a fight! You all know that! I hate to bring the crazy out but I will!
I think it was somewhat of an easier blow the 2nd time around. I was very educated about the likely hood of the return so I kind of was like "aha, this is when you choose to show back up". So bring on another long and scary fight. Please walk with us and keep us in your thoughts and prayers! We have not told Justin yet if you are wondering. Only because we are not sure to what extent I will have effects. We will tell him something, we just don't know what yet so pray for that little man. He is such a caring child, this will be harder for me then hearing the diagnoses myself.
Lots of Love to all!
Amber
Wednesday, August 21, 2013
First Grade
What a day! Justin started first grade today! Wow is he growing up so fast! To start the school year with a bang, Justin and I had a date day on Monday. In the morning he had orientation where we met his teacher Ms. O'Leary, visited his classroom and put away his school supplies. Next we headed go cart racing. Justin then told me he wanted to see Planes for a 2nd time, but later changed his mind and decided he wanted to play with our neighbors. Yesterday Justin was the same ol Justin. He went to the neighbors to swim and was just enjoying another summer day. Mommy on the other hand....I had a rough day. There are a few reasons: 1. It has been an awesome opportunity to stay home with my kids this summer and just "play". Seeing that school starts means summer is ending and well, I need to start my job search soon. And I will probably never have a summer off again. 2. Justin is growing up so fast. Laying with him in bed Monday night I had a thought. Most will say "they grow up in a blink of an eye". Although that is a true statement, I selfishly want him to grow up. That means I am further out from diagnoses and closer to the "safety zone" and it also means that if the worst were to happen and my cancer took me away from him and Ryan, It is more I was able to experience with them. I am in no way rushing time, but I want to soak in every moment I can with my boys and anyone that has been through cancer will agree that the thought is constant. What if this is the last year I prepare him for school, what if this is the last Christmas, WHAT IF?? It gets old, but no matter what, this is a fear! 3. My third reason for having a sappy day was I read on a Triple Negative site that I follow about one of the founders who lost her battle with cancer over the weekend. This saddened me and also made me angry. So of course in typical Amber fashion, I researched to see how many differences I could point out to prove that this doesn't mean Amber will relapse...."I'll bet she didn't have a mastectomy"....She did. "I'll bet hers was further progressed at her initial diagnoses"....It wasn't. Lastly "I'll bet she didn't diet and exercise"....Incorrect again, in fact she ran a marathon 10 months after chemo.....So this left me too with that fear and annoyance of if she can't beat it, how the heck can I! I know and just needed to remind myself that this is "Amber's story" not hers. Only the man upstairs knows how it will play out! Let it go, I am doing everything I can to balance my life between health, fitness and happiness. I slip and cheat on my diet at times, I don't work out every day, but that isn't a sin. That is human! I still have to be a human....I can't be a machine, right? I have to enjoy my time on earth!! I texted back and forth with my cancer buddy Christine yesterday. Funny that she was having somewhat of the same thoughts as me yesterday! I told you cancer peeps think alike. I do think this was a sign because I was really feeling sorry for myself and then the text came in from her. just talking to her and knowing I'm not alone, helped perk me up! As of right now, I am healthy! I have remembered that all summer! Yesterday I somehow let fear take over. I am blaming it on Justin's start of school. And her and I reminded each other that Others may not have cherished their children's first day of school like we do. They don't think this could be their last, but in actuality, it unfortunately could be. But because of our past, we are forced to think about death more then others. Today I have been fine, so please don't call in the Doctors to take me to a padded cell. I promise I am okay!
Ryan and I kept busy today and played a lot. He is roaming looking for Justin and so am I. I keep looking at the clock to see if it is time to get him. I can not wait to hear about his day. Last night he told me he was worried he would not have friends since a majority of his daycare friends will be at a different school. I reminded him that he is such a nice, funny boy that he will not have any problems. I also told him how it was around first grade that I met my friends Megan and Lisa. He knows how close we still are and that brightened him up. I am lucky that I have great friends and can give him real examples to take his fears away! I mean when he tells me he is afraid of monsters under the bed. I sometimes am too afraid to look for him because I have the same fear, but last night I could fix his fear! This made me so happy!
I hope everyone has a wonderful school year with their children! Remember to enjoy all of it because they grow up too fast:)
Amber
Wednesday, July 31, 2013
August Already
I am having a hard time with knowing that August 1st is tomorrow! For those in Illinois, you know this has been kind of a cool summer! So to think it is August seems weird! From the pictures on my last update, you can tell it has not stopped the fun for the Naughtons! It is a blessing that this "break" from work happened when it did. As most of you have told me, I now realize it completely: I NEEDED IT! I have not only spent quality time with my kids and feel like I have made up for lost time that I was not always the happiest, healthiest and best mommy a year ago. I have also done what I said I wanted to do: take care of me. I have enjoyed waking up before the kids and doing yoga in our newly finished basement. I love and need a walk or run after Don gets home from work and Ryan goes to bed:) And I have enjoyed finding juicing recipes to try. I am juicing in the morning and make enough for 2 glasses. So far my favorite juice is Carrot, Kale, turmeric, apple, cucumber and 1/2 of a lemon. It is refreshing and good! I do however fear that my nose will turn orange with the amount of carrots I am eating (like what happens to a baby eating too much orange baby food) so feel free to tell me if I do not notice!
What is next? Tomorrow we leave for North Carolina to see my parents. I am thrilled. I have not been there to visit since before Ryan. Of course that seems like forever ago, but with our small mishap last summer, they spent a majority of the time here. So wish me luck and say lots or prayers for me as I fly out tomorrow at 3 with 2 kids. Justin will do fine, he loves to fly and is old enough to sit and enjoy the ride. Ryan on the other hand....Yeah, just prayers please. He has a mind of his own and I will not know until tomorrow at 3 how it will go. When we return, Justin and I just have 1 full week before school starts so I'm taking ideas of outings in Illinois if anyone has ideas. I was thinking the city one day and then who knows what else. And then the week of Labor day: DISNEY!! He still does not know. He knows we are going because we have talked about it for a year, but he has no clue that it is right around the corner!!! So excited about this one.
After our last couple of adventures, my personal goal is to start looking for work. I have browsed, but I really have not looked hard so I'm a tad scared and it will be weird starting over, but I think it will be time. I also will need to stop by and say "hello" to Dr. Hantel in September. I am not sure what that appointment will entail, I just know I need to see him and check in every 4 months. My parole officer. I have not noticed any changes in my body or aches and pains so I take that as a good sign. And since it is only August and I have some great things planned, I really don't need to worry about it just yet!
Lastly, I need to request some prayers for Don's aunt Jody. Jody wasn't feeling well a few weeks ago and ended up in the hospital. She was unable to keep any food down so they did some tests and discovered she has stage 4 pancreatic cancer. The cancer has spread to her liver. Jody was moved yesterday to a hospice hospital. I went and talked with Jody at the hospital last week. She was in good spirits, but knew the prognosis was not good. Jody has 4 grown children, tons of grandchildren and several in-laws, and nieces and nephews pulling for her. All anyone wants is for Jody to be healed, but if we can't get that, I ask that Jody finds peace and comfort in knowing she has an wonderful family and they are wonderful because of the way she and Don's Uncle Jack raised their kids and showed love to their extended family. Please say a prayer for her that she is comfortable and at peace. I also ask that you pray for her family. This happened so quickly and they have been forced to make several decisions that nobody wants to ever make for someone. Please pray that they can find peace and comfort in all of this. Jody will be missed but she will soon be healed and that is the true reward for everyone.
The pictures are from my sister-in-law Lauren's sister Carrie's wedding on July 20th. Justin was the ring bearer and that beautiful little girl is my niece Paige.
Love,
Amber
After our last couple of adventures, my personal goal is to start looking for work. I have browsed, but I really have not looked hard so I'm a tad scared and it will be weird starting over, but I think it will be time. I also will need to stop by and say "hello" to Dr. Hantel in September. I am not sure what that appointment will entail, I just know I need to see him and check in every 4 months. My parole officer. I have not noticed any changes in my body or aches and pains so I take that as a good sign. And since it is only August and I have some great things planned, I really don't need to worry about it just yet!
Lastly, I need to request some prayers for Don's aunt Jody. Jody wasn't feeling well a few weeks ago and ended up in the hospital. She was unable to keep any food down so they did some tests and discovered she has stage 4 pancreatic cancer. The cancer has spread to her liver. Jody was moved yesterday to a hospice hospital. I went and talked with Jody at the hospital last week. She was in good spirits, but knew the prognosis was not good. Jody has 4 grown children, tons of grandchildren and several in-laws, and nieces and nephews pulling for her. All anyone wants is for Jody to be healed, but if we can't get that, I ask that Jody finds peace and comfort in knowing she has an wonderful family and they are wonderful because of the way she and Don's Uncle Jack raised their kids and showed love to their extended family. Please say a prayer for her that she is comfortable and at peace. I also ask that you pray for her family. This happened so quickly and they have been forced to make several decisions that nobody wants to ever make for someone. Please pray that they can find peace and comfort in all of this. Jody will be missed but she will soon be healed and that is the true reward for everyone.The pictures are from my sister-in-law Lauren's sister Carrie's wedding on July 20th. Justin was the ring bearer and that beautiful little girl is my niece Paige.
Love,
Amber
Tuesday, July 16, 2013
Our Summer So Far
This pretty much sums up our summer so far! We are having a blast and enjoying every second of our time together! Feeling great! I have been doing yoga, running (more like walking with this heat) and started juicing twice a day. I love it all! When I'm not caring for the myself or the family, I am sleeping! This is exhausting! Here are some pics thank you for checking in on us! Next up Michigan wedding, North Carolina, back to school and Disney!! Oh and a job....let me know if anyone has found one for me! One of those would be nice this Fall too:)
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| Brookfield Zoo |
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| Cousin Paige and Justin watching the fireworks |
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| Fireworks on the 4th of July at the Lake |
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| First Hair cut |
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| Park Time |
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| Backyard Fun |
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| Pool Time |
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| More pool Time |
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| More Park Time |
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| Head Phones for the race |
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| Boat Rides |
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| Justin's 6th Birthday Party |
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| 6th Birthday |
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| One exhausted but happy mommy |
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| T-Ball |
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| More T-Ball |
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| ER Visit |
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| Go Kyle Busch! |
Wednesday, June 19, 2013
A Year Ago Today....
A year ago today I went to work as usual. I remember it like it was yesterday. I had a cold and was just annoyed that I was using my lunch break to have my lump in my breast checked. I left work for lunch, without really telling anyone where I was going. Why would I tell anyone, I wasn't worried, I was probably going to have my breast drained for all I thought. I meet with the practitioner and she immediately says she needs to get the Doctor. Not until she returned and told me I needed a mammogram "TODAY" and gave me a paper with the name of a surgeon, did I start to panic. Still I was not all that scared. Since there was a break between my mammogram and that appointment, I decided it wasn't best to return to work and draw attention to this "small little appointment". Instead I opted for a pedicure, which was probably the best decision, since my world was about to change and pedicures were out of the question due to the risk of infection! Next I show up for my mammogram. Still not that worried, then an ultra sound. Even when the tech was taking forever on my right breast and armpit I was wondering if they would drain the milk duct in the office or if it would require a surgeon like the practitioner had told me. Finally when things hit me, the Radiologist calls me into the screening room and shows me my scans. She tells me my entire right breast is covered in a tumor. She scares me more by telling me it has calcification's which tells her not only is it cancer, but that it has been there for awhile. The next few minutes, hours, days, weeks, months are a blur!
A year ago today my life forever changed! When I look back, it was really a pretty fast year! I remember meeting with the surgeon, who I met with again today for a 6 month follow up appointment, last year he told me that it would be a long 9 months. I remember thinking, man the last 9 months were long with my pregnancy with Ryan, now I have to do this again! Little did I know being pregnant with Ryan was a cake walk! Chemo was not easy, but I still smile when Doctors, friends or family asks me how I handled it. I did great! I don't want to go back EVER, but it was easy for me! I mean I was tired, moody, sick, etc. But I loved the steroids and I never threw up or missed anything because of it. Surgery, now that was tough. I will admit I really thought it would be easier to heal and recover from and it was not! It is tough to go from doing everything to doing nothing! Radiation....I considered this my morning meditation. It was relaxing to me to drop the kids of and just lay there topless! HA! Not that I meditate topless, but it requires nothing but laying still! They play any music you like and the techs are awesome! Again, I would do without it ever again, but that was easy peasy! Last reconstruction. Again, not as easy as I thought, but I love my boobs! I wish we met on other terms, but I love my boobs!
I have blogged this past year about my journey. This is again nothing I ever thought I would do, but it has been helpful to not only my loved ones but to me. It is so much easier to write your feelings then express them! Believe me, if you are one I have turned to throughout this, you probably left thinking "Note to self, don't ask Amber again how she is feeling". Nah, but I do appreciate anyone brave enough to confront the topic of cancer with me. I can not say it enough, had I not gone through this, I do not know that I would be as good of a friend as some have been to me through this. It is difficult to talk to someone going through something so terrible and it takes bravery, compassion, care and probably lots of water proof mascara and Kleenex to do a face to face. So for that I am thankful that I have wonderful friends and family that talked, cried, laughed and prayed for me!
I have promised myself to never let cancer sneak up on me again. I started by making the decision in January to take a break. To do that, my job decided to leave and go to Atlanta because they knew I wouldn't go on my own terms.....No, but I did use them moving as a way to justify taking some time off and getting paid to have time off. So thank you Porsche, but I miss it daily! I also started watching my sugar and fat intake. I do fairly well with this, except for the past couple of weeks due to again the relocation of Porsche and needing to do one last lunch (and a drink or 2 with a select few) with just about everyone! But I am slowly getting back on track! I started yoga, which I still love, but don't get to near enough, especially with the nicer weather. And lastly I started running. This too I tied to work. I started an app (C25K) that is 8 weeks to running a 5K. I started it when I had 8 weeks left to work. I am a little behind, but I can say proudly that I am running 2.75 miles without having to stop! I recommend the app to anyone, it is awesome! If I can do it, so can you. I have not ran since high school and during those runs, I am not sure they were productive because it was probably through corn fields running from police during the infamous road parties that we had! Again, I am kidding, but the app has really helped to get me there and I look forward to running my first 5K with my head shavers aka best friends: Lisa and Meg later this summer.
I am still scared daily and think about cancer way too much, but I feel so good! I am so proud of myself and hope to continue to doing what I can to stay healthy. It also feels good to have some extra time with my boys. Just being off a couple of days I have already realized how much a job gets in the way from precious time with them. Don, don't worry, I promise I will be searching for a job soon. But going from work, to home, to dinner to baths to bed is a 3rd job. To have some more flexibility because work isn't in the way is kind of nice! Like last night, going outside to play catch with Justin, that warms my heart! We are making memories! Not because I'm going anywhere, but I long for the day that he says remember that summer you didn't go to work and we played catch, caught lightening bugs, fed the ducks, etc....I long for that and can't wait to make those memories this summer.
So good bye cancer! You are not welcome anymore! You tried to destroy a year of my life. As hard as it was, I found the good in it. It has made me love more, laugh often and live. Oh and the wonderful friends I have met along the way is amazing! Some have left me, but are still cheering me on and will always have a place in my heart!
A year ago today! Hard to believe!
Love,
Amber
A year ago today my life forever changed! When I look back, it was really a pretty fast year! I remember meeting with the surgeon, who I met with again today for a 6 month follow up appointment, last year he told me that it would be a long 9 months. I remember thinking, man the last 9 months were long with my pregnancy with Ryan, now I have to do this again! Little did I know being pregnant with Ryan was a cake walk! Chemo was not easy, but I still smile when Doctors, friends or family asks me how I handled it. I did great! I don't want to go back EVER, but it was easy for me! I mean I was tired, moody, sick, etc. But I loved the steroids and I never threw up or missed anything because of it. Surgery, now that was tough. I will admit I really thought it would be easier to heal and recover from and it was not! It is tough to go from doing everything to doing nothing! Radiation....I considered this my morning meditation. It was relaxing to me to drop the kids of and just lay there topless! HA! Not that I meditate topless, but it requires nothing but laying still! They play any music you like and the techs are awesome! Again, I would do without it ever again, but that was easy peasy! Last reconstruction. Again, not as easy as I thought, but I love my boobs! I wish we met on other terms, but I love my boobs!
I have blogged this past year about my journey. This is again nothing I ever thought I would do, but it has been helpful to not only my loved ones but to me. It is so much easier to write your feelings then express them! Believe me, if you are one I have turned to throughout this, you probably left thinking "Note to self, don't ask Amber again how she is feeling". Nah, but I do appreciate anyone brave enough to confront the topic of cancer with me. I can not say it enough, had I not gone through this, I do not know that I would be as good of a friend as some have been to me through this. It is difficult to talk to someone going through something so terrible and it takes bravery, compassion, care and probably lots of water proof mascara and Kleenex to do a face to face. So for that I am thankful that I have wonderful friends and family that talked, cried, laughed and prayed for me!
I have promised myself to never let cancer sneak up on me again. I started by making the decision in January to take a break. To do that, my job decided to leave and go to Atlanta because they knew I wouldn't go on my own terms.....No, but I did use them moving as a way to justify taking some time off and getting paid to have time off. So thank you Porsche, but I miss it daily! I also started watching my sugar and fat intake. I do fairly well with this, except for the past couple of weeks due to again the relocation of Porsche and needing to do one last lunch (and a drink or 2 with a select few) with just about everyone! But I am slowly getting back on track! I started yoga, which I still love, but don't get to near enough, especially with the nicer weather. And lastly I started running. This too I tied to work. I started an app (C25K) that is 8 weeks to running a 5K. I started it when I had 8 weeks left to work. I am a little behind, but I can say proudly that I am running 2.75 miles without having to stop! I recommend the app to anyone, it is awesome! If I can do it, so can you. I have not ran since high school and during those runs, I am not sure they were productive because it was probably through corn fields running from police during the infamous road parties that we had! Again, I am kidding, but the app has really helped to get me there and I look forward to running my first 5K with my head shavers aka best friends: Lisa and Meg later this summer.
I am still scared daily and think about cancer way too much, but I feel so good! I am so proud of myself and hope to continue to doing what I can to stay healthy. It also feels good to have some extra time with my boys. Just being off a couple of days I have already realized how much a job gets in the way from precious time with them. Don, don't worry, I promise I will be searching for a job soon. But going from work, to home, to dinner to baths to bed is a 3rd job. To have some more flexibility because work isn't in the way is kind of nice! Like last night, going outside to play catch with Justin, that warms my heart! We are making memories! Not because I'm going anywhere, but I long for the day that he says remember that summer you didn't go to work and we played catch, caught lightening bugs, fed the ducks, etc....I long for that and can't wait to make those memories this summer.
So good bye cancer! You are not welcome anymore! You tried to destroy a year of my life. As hard as it was, I found the good in it. It has made me love more, laugh often and live. Oh and the wonderful friends I have met along the way is amazing! Some have left me, but are still cheering me on and will always have a place in my heart!
A year ago today! Hard to believe!
Love,
Amber
Wednesday, June 12, 2013
Closure
Well, the week has finally arrived! Another chapter closing in my life. This is my last week employed with Porsche Financial Services. You have heard it before, but I could not ask for a better group of people to work with / for. I knew this before I was ill, but going through a life changing event solidified what a great company it is. I do not think I made the wrong decision as the timing was not right for us to up-root to Atlanta GA, but I am a mess every time I think of not seeing some of these people on a daily basis. But as they say "as one door closes another opens".
This past month has been a bit crazy, confusing, anxious, irritating, etc. Most know I traveled to New York 2 weeks ago to meet with Dr. Vahdat at the Weill Cornell breast center. I stumbled across this trial towards the end of April and began speaking with Dr. Vahdat, the trial nurse and the office manager. It took some time for us to connect, but we did and I went through all the scans required to qualify me for the trial. When finding out my scans were clean, I sent everything to them and that is where it should have been my first sign that this was not going smoothly. I sent my documents and it took a week after that for me to finally get someone on the phone. At that point the trial nurse told me that I needed to consent to the trial within 4 weeks of my last scans. (That meant by 6/7/13) I was one week down already and you might as well say 2 because the following week that I was talking to her, I had plans to travel to Atlanta for work. No need to panic, she made an appointment for me to see Dr. Vahdat on 5/28/13.
So that Tuesday, I woke up bright and early and caught my flight to New York. I cabbed it to the office with plenty of time to spare. I first met with a medical student who wanted to review my scans. She asks me about the "spots" located on my liver and lung. The spot on my liver has been there since at least 2005 because I had a CT scan at that time and this spot showed again in 2012 and now 2013. The lung spot is small and considered "stable" and is on the right side, which is the side of radiation. My Doctor and the doctors that read my scans at Edwards state it is anything a healthy person could have on their lung. Not to mention it was there in 2012 as well. Anyhow, I explain this all to the student. Next I meet with Dr. Vahdat. She asks the same questions as the student. She tells me in order to consent, she wants the CD's of my CT scan from 2005 and 2012. I held it together in the office, but was rather annoyed. I felt if they had read my reports that they requested and had questions, they would have requested these before I traveled to New York.
I book it back to the airport to come home so I don't miss another day of work since I was not consenting on this trip and spend my evening in the airport until finally at midnight they cancelled my flight due to weather in Chicago. Luckily my dad had points so he was able to get me a room close to the airport. He booked a room with double beds and told me to make sure I took advantage of both beds....The next morning I concocted a nice story to my aunt that since Dad did that I offered the other bed to a nice man I met at the airport who was selling watches! HA! I was a bit delirious and bored at this point. I get home by 11:30 but I was way too tired to work since I had been up since 4 the morning before.
I came home and Don overnighted the requested CD's Dr. Vahdat's office and they are delivered on 5/30/13. From there, I sent daily e-mails and made daily phone calls and left messages to inquire that they received the CD's and can you give me as much advance notice of when I need to be back since I will need to make flight arrangements. All the while I still think, I'm giving them a chance, they aren't used to patients traveling maybe. It was an oversight. Last week comes and still no response. Don got involved and talked to the office manager who tells him that Dr. Vahdat is at a conference, but someone will respond to me that day. Finally last Wednesday I get an e-mail from the nurse that my CD's are still with Pathology. I ask if I could get an extension to the 4 week consent period. The nurse says she will ask Dr. Vahdat and then silence.....Oh and let me tell you, all the while when they would respond by e-mail, I was known as Amber, Ambar and Andrea....
Finally Monday I had had it. I have questioned from my trip if I really wanted to invest in this. I would be required to travel once a month to New York for blood tests. This is not an FDA approved drugs and it does come with some toxicity issues. If this doctor can't call a patient back to confirm receipt of a CD, will she call me back if I am sick and in Illinois? Can I trust her to review my monthly blood work? So when I checked my e-mail on Monday and still didn't have a response, I sent Dr. Vahdat, the nurse and the office manager an e-mail explaining to them how upset I was with the follow up. I ended my e-mail by letting them know I was not interested. I explained to them that this was very difficult because this is not a business transaction where I can take my business elsewhere. This is a trial that could potentially keep me cancer free. I also let Dr. Vahdat know that I thought by her not responding to my CD's that were sent and several patient inquiries was negligent. It is a shame it did not work out and even after sending it, I still wasn't sure if this was the right choice, but I was losing sleep, I had that anxious feeling again that what if my doctor missed something. Who can I trust??? I sent this e-mail and within 15 minutes I had a response from Dr. Vahdat. She explained to me that my scans were with Pathology still and that the delay was actually caused from my Oncologist not responding to her timely and that she was at an Oncologist seminar (really, every Oncologist was there at McCormick place and I will guarantee McCormick place allowed the use of cell phones, they are doctors for Gods sake). Anyhow, I didn't argue, I thought I said what I needed to say, move on. Oh and also my oncologist and I had spoken last week in regards to the spots and he offered to do any test possible to speed this up, so I really don't think he was not responding to her.
To solidify that I made the right decision (you know me, always looking for a sign), I get an e-mail from the office manager at Dr. Vahdat's office yesterday and she apologizes for not meeting my expectations, but the pathology department is unable to open the CD that was sent and they are going to need to send it to the main hospital to view, but this will cost money. How would they like me to proceed. So I couldn't help myself, I responded and thanked them for the sign that continuing to work with them was not an option. Dr. Vahdat flat out lied to me. She claimed my tests had been with pathology for a week. Did they try for a week to "open" the CD? Wow!
Needless to say, I will not be participating in any clinical trial this summer in New York. I am open to ideas so if you hear of anything, please let me know as I still am looking for the right thing to do to stay cancer free. It really is a shame that this happened. I know I get more out of this then they do, but I can not operate this way. On top of it, like I said, it was causing anxiety issues because she opened up a concern and then left me hanging. I mentioned this in the e-mail and I truly mean it :" I hope none of you or a loved one are ever on the other side of cancer". It is so true, they were wreck less with my information and in my opinion are not taking the trial serious. Trials are not for everyone, they are time consuming and may be pointless, I would think if a patient volunteers, they would jump on it. Just sad.
Everything else is GREAT! Justin graduated Kindergarten and starts T-Ball tomorrow night. He told me that he is excited for first grade, but doesn't think he wants to go to 2nd grade because he heard the math is challenging....Ryan is talking more and more every day. He knows where is nose and belly is. And is obsessed with animals. They both keep me going! I'm excited to spend the summer with them. Disney is planned (Still a surprise so don't mention it if you see them) and we have a trip to North Carolina booked for August as well. Other then that, we are going to explore Illinois. If you want us to visit, let us know!
Love,
Amber
This past month has been a bit crazy, confusing, anxious, irritating, etc. Most know I traveled to New York 2 weeks ago to meet with Dr. Vahdat at the Weill Cornell breast center. I stumbled across this trial towards the end of April and began speaking with Dr. Vahdat, the trial nurse and the office manager. It took some time for us to connect, but we did and I went through all the scans required to qualify me for the trial. When finding out my scans were clean, I sent everything to them and that is where it should have been my first sign that this was not going smoothly. I sent my documents and it took a week after that for me to finally get someone on the phone. At that point the trial nurse told me that I needed to consent to the trial within 4 weeks of my last scans. (That meant by 6/7/13) I was one week down already and you might as well say 2 because the following week that I was talking to her, I had plans to travel to Atlanta for work. No need to panic, she made an appointment for me to see Dr. Vahdat on 5/28/13.
So that Tuesday, I woke up bright and early and caught my flight to New York. I cabbed it to the office with plenty of time to spare. I first met with a medical student who wanted to review my scans. She asks me about the "spots" located on my liver and lung. The spot on my liver has been there since at least 2005 because I had a CT scan at that time and this spot showed again in 2012 and now 2013. The lung spot is small and considered "stable" and is on the right side, which is the side of radiation. My Doctor and the doctors that read my scans at Edwards state it is anything a healthy person could have on their lung. Not to mention it was there in 2012 as well. Anyhow, I explain this all to the student. Next I meet with Dr. Vahdat. She asks the same questions as the student. She tells me in order to consent, she wants the CD's of my CT scan from 2005 and 2012. I held it together in the office, but was rather annoyed. I felt if they had read my reports that they requested and had questions, they would have requested these before I traveled to New York.
I book it back to the airport to come home so I don't miss another day of work since I was not consenting on this trip and spend my evening in the airport until finally at midnight they cancelled my flight due to weather in Chicago. Luckily my dad had points so he was able to get me a room close to the airport. He booked a room with double beds and told me to make sure I took advantage of both beds....The next morning I concocted a nice story to my aunt that since Dad did that I offered the other bed to a nice man I met at the airport who was selling watches! HA! I was a bit delirious and bored at this point. I get home by 11:30 but I was way too tired to work since I had been up since 4 the morning before.
I came home and Don overnighted the requested CD's Dr. Vahdat's office and they are delivered on 5/30/13. From there, I sent daily e-mails and made daily phone calls and left messages to inquire that they received the CD's and can you give me as much advance notice of when I need to be back since I will need to make flight arrangements. All the while I still think, I'm giving them a chance, they aren't used to patients traveling maybe. It was an oversight. Last week comes and still no response. Don got involved and talked to the office manager who tells him that Dr. Vahdat is at a conference, but someone will respond to me that day. Finally last Wednesday I get an e-mail from the nurse that my CD's are still with Pathology. I ask if I could get an extension to the 4 week consent period. The nurse says she will ask Dr. Vahdat and then silence.....Oh and let me tell you, all the while when they would respond by e-mail, I was known as Amber, Ambar and Andrea....
Finally Monday I had had it. I have questioned from my trip if I really wanted to invest in this. I would be required to travel once a month to New York for blood tests. This is not an FDA approved drugs and it does come with some toxicity issues. If this doctor can't call a patient back to confirm receipt of a CD, will she call me back if I am sick and in Illinois? Can I trust her to review my monthly blood work? So when I checked my e-mail on Monday and still didn't have a response, I sent Dr. Vahdat, the nurse and the office manager an e-mail explaining to them how upset I was with the follow up. I ended my e-mail by letting them know I was not interested. I explained to them that this was very difficult because this is not a business transaction where I can take my business elsewhere. This is a trial that could potentially keep me cancer free. I also let Dr. Vahdat know that I thought by her not responding to my CD's that were sent and several patient inquiries was negligent. It is a shame it did not work out and even after sending it, I still wasn't sure if this was the right choice, but I was losing sleep, I had that anxious feeling again that what if my doctor missed something. Who can I trust??? I sent this e-mail and within 15 minutes I had a response from Dr. Vahdat. She explained to me that my scans were with Pathology still and that the delay was actually caused from my Oncologist not responding to her timely and that she was at an Oncologist seminar (really, every Oncologist was there at McCormick place and I will guarantee McCormick place allowed the use of cell phones, they are doctors for Gods sake). Anyhow, I didn't argue, I thought I said what I needed to say, move on. Oh and also my oncologist and I had spoken last week in regards to the spots and he offered to do any test possible to speed this up, so I really don't think he was not responding to her.
To solidify that I made the right decision (you know me, always looking for a sign), I get an e-mail from the office manager at Dr. Vahdat's office yesterday and she apologizes for not meeting my expectations, but the pathology department is unable to open the CD that was sent and they are going to need to send it to the main hospital to view, but this will cost money. How would they like me to proceed. So I couldn't help myself, I responded and thanked them for the sign that continuing to work with them was not an option. Dr. Vahdat flat out lied to me. She claimed my tests had been with pathology for a week. Did they try for a week to "open" the CD? Wow!
Needless to say, I will not be participating in any clinical trial this summer in New York. I am open to ideas so if you hear of anything, please let me know as I still am looking for the right thing to do to stay cancer free. It really is a shame that this happened. I know I get more out of this then they do, but I can not operate this way. On top of it, like I said, it was causing anxiety issues because she opened up a concern and then left me hanging. I mentioned this in the e-mail and I truly mean it :" I hope none of you or a loved one are ever on the other side of cancer". It is so true, they were wreck less with my information and in my opinion are not taking the trial serious. Trials are not for everyone, they are time consuming and may be pointless, I would think if a patient volunteers, they would jump on it. Just sad.
Everything else is GREAT! Justin graduated Kindergarten and starts T-Ball tomorrow night. He told me that he is excited for first grade, but doesn't think he wants to go to 2nd grade because he heard the math is challenging....Ryan is talking more and more every day. He knows where is nose and belly is. And is obsessed with animals. They both keep me going! I'm excited to spend the summer with them. Disney is planned (Still a surprise so don't mention it if you see them) and we have a trip to North Carolina booked for August as well. Other then that, we are going to explore Illinois. If you want us to visit, let us know!
Love,
Amber
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