It has been a few weeks since my last post. I have been enjoying this time of feeling good and spending lots of time with my family and friends without being at doctors appointments or in the hospital 3-4 times a week. This upcoming Tuesday I will be having my double mastectomy along with reconstructive surgery. It is inpatient so we will be there overnight. At least this time we are planning for it so it will not be a surprise. Nonna will be watching the kids at my house for the 2 days I am in the hospital and my parents will then take the kids to Saratoga for 10 days. I am sure I will miss them but I am going to take this time for me to recover and heal so that when I get the kids back I will hopefully be able to move around pretty well.
Bryan and I had to make a VERY hard decision to put Jamyson into daycare while I am recovering from the surgery. He will be full time until I am recovered and then part time through my chemo. Not only is it hard for me to be a stay at home Mom and put my kid in daycare, it makes me so very sad that I will not going to be able to take care of him for a few weeks. In the end we know this is the best decision for both him and I. We debated putting him in a center or at home care and thought with his energy level he needs a center to be around kids his own age as well as having daily structure. The place he is in has a huge playground, and a gymnasium with a bouncy bounce, bikes, scooters, cars, and slides. He is not going to want to come home:-) Financially this is going to be really hard but we are cutting back a lot and this is not a permanent thing.
Today I spent my morning with Mady, Sam and Bella doing Muffins with Mom at the preschool and then on to a birthday party for their friend Heidi. Sitting here, I know these are going to be memories that we will all remember. Going through this process has made me appreciate the little things. I also do not take my friends and family for granted. Tonight the Haldeman's are coming over to do our "Thanksgiving" in March that we do every year. I am taking this silent moment while the kids are napping and Bry is out with Bryan Paul to be thankful for so many things in my life. I have a husband who loves me more than life itself. My kids are happy and healthy. I thank my lucky stars that this is happening to me and not one of them!!!!! I have a supportive , loving and healthy family. My friends, there are no words to express how much they have rallied and been with me through this entire process. Pretty much I a lucky girl!
Saturday, March 9, 2013
Thursday, February 28, 2013
Last week, I was out for a run. It was about 5:30 am, about 25 degrees, and pitch black outside. It was one of those times when nobody else is around, it's perfectly still outside, and there's nothing around to distract you from your thoughts. You know the feeling... the stillness and quiet leaves nothing between you and your deepest thoughts and sense of being. Nowhere to hide.
I couldn't stop thinking about the previous few days and some of the things that you've been saying to me and feelings you've expressed. The entire run, it consumed my every thought.
The next day, I was listening to my book, once again on a run. And almost as if answering my thoughts, there was a passage in the book that described Abraham Lincoln and what made him incredible:
You see, it's not his courage, or his perseverance, or his vision that made him great, but his hope. He had enough hope to carry himself, his family, his Cabinet, his country, and really, all of humanity through one of the darkest times in human history. And that, Amanda, is what it takes to get through.
I couldn't stop thinking about the previous few days and some of the things that you've been saying to me and feelings you've expressed. The entire run, it consumed my every thought.
The next day, I was listening to my book, once again on a run. And almost as if answering my thoughts, there was a passage in the book that described Abraham Lincoln and what made him incredible:
“Having hope means that one will not give in to overwhelming anxiety, a defeatist attitude or depression in the face of difficult challenges or setbacks. Hope is more than a sunny view that everything will turn out alright. It is believing you have the will and the way to accomplish your goals."
Daniel Goleman, in "Emotional Intelligence" (1995) (As quoted by Goodwin)
You see, it's not his courage, or his perseverance, or his vision that made him great, but his hope. He had enough hope to carry himself, his family, his Cabinet, his country, and really, all of humanity through one of the darkest times in human history. And that, Amanda, is what it takes to get through.
Friday, February 22, 2013
Jog for Jugs
My AMAZING friends and family have decided to join me in doing either a 5K or 1/2 Marathon. It is going to be May 11th. We have been doing this race for the last 2 years. Who knew that this year everyone would be doing the race in my honor! I am so blessed to have such an amazing support system! If you would like to join us for the race you can sign up here:
https://sites.google.com/a/powerhouseathleticsny.com/power-house-athletics/races/j4j_2010
You can contact Samantha Haldeman at shaldeman@nycap.rr.com if you would like to have a shirt. My brother Nick is making shirts for anyone that would like one. He designed a tree that is on the back of the shirt with all of my supporters names.
https://sites.google.com/a/powerhouseathleticsny.com/power-house-athletics/races/j4j_2010
You can contact Samantha Haldeman at shaldeman@nycap.rr.com if you would like to have a shirt. My brother Nick is making shirts for anyone that would like one. He designed a tree that is on the back of the shirt with all of my supporters names.
We have a Plan!
The last 2 weeks have been quite hectic. Lots going on with so little time. So here is an update on what has been going on. In my last post I informed everyone that I am getting a double mastectomy. I went last week on Wednesday and got my drain out, YEAHHHHHH! I was feeling pretty good almost a day after it was out so I was very happy about that. At that appointment I found out that I am getting what they call a Simple Mastectomy. I am still not doing any internet researching so I really thought that they were going to just cut off everything. I am not going to go into too much detail (Google it if you want to know) but that is not the case for me. Finding this out made me feel a ton better! I also went to see a plastic surgeon because I am going to have reconstructive surgery at the same time as I get the mastectomy. He explained that they put spacers in to stretch out the skin and fill them weekly until the desired size. Bryan has referred to them as his own personal punching bags:-) When I am done with chemo they will then have another surgery to switch out the spacers and place in the implants. Wonderful, another surgery! Oh well I will at least have a nice rack when I am finished. Because my surgeon and my plastic surgeon had to find a time where they are both available and the OR is available I am not scheduled for everything until March 12th. That means that I will have to wait for 4-6 weeks after that surgery to start chemo. My goal of being done before summer is now pushed back. That is OK, because I am looking forward to a few weeks of normalcy for my family. The kids have been pretty hard to deal with recently. I think that they are sensing the stress of everything going on.
On another note I spent the day at the ER with Jamyson this week. He decided that he was going to eat Bryan Paul's medication instead of his breakfast. I called poison control and they told me to call 911. I was worried that may be overkill so I called the kids pediatrician and she said to call 911 as well. I asked if I could just bring him to the ER and she said no, call 911 now because he could go into respiratory distress. So I made my first ambulance ride with a screaming child who did not want to be strapped down. I had the other 2 kids so I made a frantic call to Bryan telling him to get home, NOW. I also ran to my neighbors house and asked her if she would mind staying with the kids until Bry got home. My Mother In Law came over and took the kids so Bry could go back to work. Long story short, Jamyson is fine, he was super mellow at the hospital and snuggled in the bed with me all day because they wanted to observe him for 6 hours. Anyone who knows Jamyson knows he is NEVER mellow. Those meds calmed him right down. My Mother in law told me not to get any ideas;-)
I got my port installed this morning. I am not very happy about where they positioned it because I am not going to be able to wear lower cut shirts. I thought that it was going to be closer to my bra line but it is more toward the center. It is also kind of freaky feeling. I keep trying to get Bry to feel it but he is way to freaked out. He is fine with me getting all of these surgery's but freaks out because of the port. It was kind of nice to be in and out of the hospital in 4 hours and everything went as planned.
Because of the fact that I am feeling good for the next couple of weeks we have stopped the meals. I really enjoy cooking and it is an out for my stress. Samantha will be contacting everyone when we start it back up. I have been informed that after the mastectomy I am not going to be able to do anything for almost 2 weeks. I am sure I will be needing tons of help then. Thank you so much for everyone support. The meals, care packages, cards, thoughts and prayers mean so much to me and my family! We would not be able to do this without you all!
On another note I spent the day at the ER with Jamyson this week. He decided that he was going to eat Bryan Paul's medication instead of his breakfast. I called poison control and they told me to call 911. I was worried that may be overkill so I called the kids pediatrician and she said to call 911 as well. I asked if I could just bring him to the ER and she said no, call 911 now because he could go into respiratory distress. So I made my first ambulance ride with a screaming child who did not want to be strapped down. I had the other 2 kids so I made a frantic call to Bryan telling him to get home, NOW. I also ran to my neighbors house and asked her if she would mind staying with the kids until Bry got home. My Mother In Law came over and took the kids so Bry could go back to work. Long story short, Jamyson is fine, he was super mellow at the hospital and snuggled in the bed with me all day because they wanted to observe him for 6 hours. Anyone who knows Jamyson knows he is NEVER mellow. Those meds calmed him right down. My Mother in law told me not to get any ideas;-)
I got my port installed this morning. I am not very happy about where they positioned it because I am not going to be able to wear lower cut shirts. I thought that it was going to be closer to my bra line but it is more toward the center. It is also kind of freaky feeling. I keep trying to get Bry to feel it but he is way to freaked out. He is fine with me getting all of these surgery's but freaks out because of the port. It was kind of nice to be in and out of the hospital in 4 hours and everything went as planned.
Because of the fact that I am feeling good for the next couple of weeks we have stopped the meals. I really enjoy cooking and it is an out for my stress. Samantha will be contacting everyone when we start it back up. I have been informed that after the mastectomy I am not going to be able to do anything for almost 2 weeks. I am sure I will be needing tons of help then. Thank you so much for everyone support. The meals, care packages, cards, thoughts and prayers mean so much to me and my family! We would not be able to do this without you all!
Sunday, February 10, 2013
Plans have changed!
Sorry it has been so long since my last post. It has taken me a bit of time to digest the latest information that we have received.
So after the last week of doctors appointments we have finally decided on me having a double mastectomy. It has been a really hard and emotionally draining decision for both me and my family. We do feel that it is the right direction to go. After dealing with all of the complications and pain from the last surgery I am not looking forward to dealing with that again. The plus side to all of this is that I get a free boob job;-) To all those out there where that is a bit of TMI, sorry but this is a definite positive for me!
So what the plan for this week is I will be meeting with my surgeon to remove my drain, yeahhhhh!!!!!! This is exciting because I will finally get a few showers in before my next surgery. I will also be meeting with my plastic surgeon. When asking Bry if he can be available for this appointment he asked me if they would have models there to pick out sizes during the appointment!?!?! We are definitely trying to hold on to our humor:-) When they do the surgery they will at the same time install the port for chemo, as well as do the reconstructive surgery. I will know more details toward the end of the week. This means that chemo will be put off for at least 4-6 week after my surgery so I am completely healed.
As always leaving on a positive note... Because I am having the mastectomy I may not have to get radiation and I get a boob job!! I also will not have to put my wigs to use for another month or two:-)
So after the last week of doctors appointments we have finally decided on me having a double mastectomy. It has been a really hard and emotionally draining decision for both me and my family. We do feel that it is the right direction to go. After dealing with all of the complications and pain from the last surgery I am not looking forward to dealing with that again. The plus side to all of this is that I get a free boob job;-) To all those out there where that is a bit of TMI, sorry but this is a definite positive for me!
So what the plan for this week is I will be meeting with my surgeon to remove my drain, yeahhhhh!!!!!! This is exciting because I will finally get a few showers in before my next surgery. I will also be meeting with my plastic surgeon. When asking Bry if he can be available for this appointment he asked me if they would have models there to pick out sizes during the appointment!?!?! We are definitely trying to hold on to our humor:-) When they do the surgery they will at the same time install the port for chemo, as well as do the reconstructive surgery. I will know more details toward the end of the week. This means that chemo will be put off for at least 4-6 week after my surgery so I am completely healed.
As always leaving on a positive note... Because I am having the mastectomy I may not have to get radiation and I get a boob job!! I also will not have to put my wigs to use for another month or two:-)
Tuesday, February 5, 2013
Still waiting
It has been a bit since I posted so I am going to try and give an overview of the last week.
I got in to see my surgeon on Tuesday and they placed a drain back in because the fluid buildup (sonoma, very common after surgeries) was really bad. Tests came back that it was not infected though so that was good news. Because of this they put off my start date for chemo. I was suppose to start today. I know this is horrible but I am not upset that they are putting it off. I know, the earlier you start the earlier you finish but I am still wanting as much semi normalcy in my life for a bit longer. Other good news is that I am finally not in a crazy amount of pain right now. I am off all pain killers.
My PET scan (the one that they injected the radioactive stuff into me, made me drink a huge bottle of barium, and then took a ton of pictures) came back NEGATIVE for any other cancer in my body!!!!!! More good news!!! Even the spot that they still have to remove is not cancerous, yet.
This past weekend my best friends got together with me and we has a girls afternoon! It was much needed but there was a part that I was VERY nervous about. We were getting our hair cut and I was going to be picking out wigs. We had a delicious sushi lunch, can't have that when I start chemo. Then we headed to the salon. Everyone got in for their cuts before me so I started to panic sitting by myself and not wanting to deal with the whole wig thing! I got through it. Sam was actually finished before I had to go in for my first consultation so that made me feel a ton better! I got my hair cut and then went back in for the remainder of my consultation. All my girls were able to go back in with me for this one, YEAHHHHH! They actually made something so stressful into something fun! We found 2 wigs that I LOVE! You can barely tell them apart from my normal hair except they have AWESOME highlights:-) Then we started to have some more fun. I tried on a blond pixy cut wig (Bry is not a fan of the pixy cut) and sent the picture to Bryan saying that was the wig I was getting. He actually believed me, HAHAHAHA!!!! So all in all we had a wonderful day. Now to keep my husband from making faces and mustaches on my manikins is going to be harder than I thought. I am hiding any and all markers!
We did broach the subject with the kids that Mommy is going to lose her hair because of the medicine that they are going to use to make sure that the thing in her body that should not be there does not come back. They took it well. Bryan said that they were all going to shave their heads too. Mady was all on board, I don't think she got it. Bryan Paul pretty much said NO! On that same subject I have had many people including my husband, best friends, brother's who have said they are shaving their heads when I have to. This is one thing that I am not going to allow! I am honored that everyone wants to do this to support me but I really feel like it would make it harder for me. I don't have to look at myself or I will be wearing a wig or a hat. If everyone else around me shaves their heads then I will have a constant reminder of what is going on. I hope that everyone understands and respects this! The only people who are allowed to shave their heads are Dennis and Dan:-)
So for now we are waiting to hear back about my genetic testing and to make sure that my sonoma is under control to make a date for my next surgery, either a double mastectomy with a port installation, or removing the remainder of the tissue and the port installation. I will keep you updated when I have an appt and what the results are. Until then chemo is put off until I am healed from the surgery.
I am enjoying my time with my friends and family and not having so many tests, scans, and doctor appts this week. You don't know how much you appreciate it until most of your time is focused on appts instead of your family.
For everyone that is here for us through these last couple of week as well as the up coming one we want you to know how much we love you all and appreciate everything that you are doing for us. Making meals, sending care packages, cards, flowers, gift cards, house cleaning and helping out with the kids make our lives so much easier and so loved! From the bottom of our hearts we thank you!
I got in to see my surgeon on Tuesday and they placed a drain back in because the fluid buildup (sonoma, very common after surgeries) was really bad. Tests came back that it was not infected though so that was good news. Because of this they put off my start date for chemo. I was suppose to start today. I know this is horrible but I am not upset that they are putting it off. I know, the earlier you start the earlier you finish but I am still wanting as much semi normalcy in my life for a bit longer. Other good news is that I am finally not in a crazy amount of pain right now. I am off all pain killers.
My PET scan (the one that they injected the radioactive stuff into me, made me drink a huge bottle of barium, and then took a ton of pictures) came back NEGATIVE for any other cancer in my body!!!!!! More good news!!! Even the spot that they still have to remove is not cancerous, yet.
This past weekend my best friends got together with me and we has a girls afternoon! It was much needed but there was a part that I was VERY nervous about. We were getting our hair cut and I was going to be picking out wigs. We had a delicious sushi lunch, can't have that when I start chemo. Then we headed to the salon. Everyone got in for their cuts before me so I started to panic sitting by myself and not wanting to deal with the whole wig thing! I got through it. Sam was actually finished before I had to go in for my first consultation so that made me feel a ton better! I got my hair cut and then went back in for the remainder of my consultation. All my girls were able to go back in with me for this one, YEAHHHHH! They actually made something so stressful into something fun! We found 2 wigs that I LOVE! You can barely tell them apart from my normal hair except they have AWESOME highlights:-) Then we started to have some more fun. I tried on a blond pixy cut wig (Bry is not a fan of the pixy cut) and sent the picture to Bryan saying that was the wig I was getting. He actually believed me, HAHAHAHA!!!! So all in all we had a wonderful day. Now to keep my husband from making faces and mustaches on my manikins is going to be harder than I thought. I am hiding any and all markers!
We did broach the subject with the kids that Mommy is going to lose her hair because of the medicine that they are going to use to make sure that the thing in her body that should not be there does not come back. They took it well. Bryan said that they were all going to shave their heads too. Mady was all on board, I don't think she got it. Bryan Paul pretty much said NO! On that same subject I have had many people including my husband, best friends, brother's who have said they are shaving their heads when I have to. This is one thing that I am not going to allow! I am honored that everyone wants to do this to support me but I really feel like it would make it harder for me. I don't have to look at myself or I will be wearing a wig or a hat. If everyone else around me shaves their heads then I will have a constant reminder of what is going on. I hope that everyone understands and respects this! The only people who are allowed to shave their heads are Dennis and Dan:-)
So for now we are waiting to hear back about my genetic testing and to make sure that my sonoma is under control to make a date for my next surgery, either a double mastectomy with a port installation, or removing the remainder of the tissue and the port installation. I will keep you updated when I have an appt and what the results are. Until then chemo is put off until I am healed from the surgery.
I am enjoying my time with my friends and family and not having so many tests, scans, and doctor appts this week. You don't know how much you appreciate it until most of your time is focused on appts instead of your family.
For everyone that is here for us through these last couple of week as well as the up coming one we want you to know how much we love you all and appreciate everything that you are doing for us. Making meals, sending care packages, cards, flowers, gift cards, house cleaning and helping out with the kids make our lives so much easier and so loved! From the bottom of our hearts we thank you!
Monday, January 28, 2013
Tests, Tests, and More Tests!
So last week I had appointments Wednesday, Thursday, and Friday. Wednesday was an appointment with my surgeon to see how everything was healing and to take out the drain if ready. She took it out even though it was not ready. I was so super happy at that point. BIG MISTAKE!!!!! Thursday and Friday I was in so much pain because of the build up of fluid. Oh well, lesson learned!
On to Thursday. I had a MUGA scan. This is to make sure that my heart is strong enough to do the chemo treatments. They had a horrible time getting an IV in and had to stick me 7 times, having 4 different people try to get it to work, so fun! They injected me with radioactive materials and took a ton of pictures. After that test I could not be around young kids and prego's for 12 hours. WONDERFUL! That would have been nice to know before hand! So my parents took the kids for the night and got them all to school the next day. THEY ARE AMAZING!!!!
On to Friday now. Pain, pain, and more pain! The fluid build up was so bad that the hydrocodone was not even helping. I sent a message to Laura asking if this was normal and she said NO! I had a PET scan and genetics testing scheduled for this day. I tried to call my surgeons office but they do not open till 10, must be nice!!! So I went to my tests and told them how much pain I was in and they had a nurse come and look at me right away. She called my surgeon and they told me to come in after all of my tests were done. So I had a PET scan where they injected me with more radioactive stuff and then had me drink a HUGE container of barium after. It was a fasting for 12 hours before so that barium tasted like a melted milk shake to my very hungry stomach at 11 am:-) They took pictures after that for about 30 minutes. This test is to see if the cancer has spread to any other parts of my body.
Than on to genetic testing. This test is to see if I have the gene that will cause recurrences in not only breast cancer but ovarian cancer as well. This is also an important test because if I test positive to this gene anyone that is blood related to me may also carry this gene, including men. Pretty much if this test comes back positive they will recommend a double mastectomy and down the line getting my ovaries and fallopian tubes taken out. It takes 10-14 days to get these results back.
Then off to my surgeons office to have them check out this fluid buildup. At this point there was no infection and they ultra sounded it and drained it. GROSS! They did put me on antibiotics and got me more pain killers.
They are putting my surgery that I was suppose to have on Thursday to get my port installed and to remove the other tissue off until they get the results of these tests. They are also putting off my start of chemo because I have to be recovered from my surgeries before they start. Once again, the waiting game!
So now for today. I was scheduled for my Chemo Class. This class is to give me information as to what treatments I am getting, and what to expect while having them. This was a day I was DREADING! Chemo is my worst fear right now! I heard everything I knew I was going to hear but did not want to hear it. I went through the whole class without crying so I am giving myself a huge pat on the back for that. While there I had the nurse and my oncologist look at the fluid that had built up over the weekend. It was pretty bad! I def have an infection and lots more fluid build up. It is crazy painful and I am worried about lymphodimia. My surgeon is getting back to me and hopefully will see me tomorrow to figure this all out.
At the end of the day, my MUGA scan came out that I have a super healthy heart!!!! I have to end on a positive note:-)
On to Thursday. I had a MUGA scan. This is to make sure that my heart is strong enough to do the chemo treatments. They had a horrible time getting an IV in and had to stick me 7 times, having 4 different people try to get it to work, so fun! They injected me with radioactive materials and took a ton of pictures. After that test I could not be around young kids and prego's for 12 hours. WONDERFUL! That would have been nice to know before hand! So my parents took the kids for the night and got them all to school the next day. THEY ARE AMAZING!!!!
On to Friday now. Pain, pain, and more pain! The fluid build up was so bad that the hydrocodone was not even helping. I sent a message to Laura asking if this was normal and she said NO! I had a PET scan and genetics testing scheduled for this day. I tried to call my surgeons office but they do not open till 10, must be nice!!! So I went to my tests and told them how much pain I was in and they had a nurse come and look at me right away. She called my surgeon and they told me to come in after all of my tests were done. So I had a PET scan where they injected me with more radioactive stuff and then had me drink a HUGE container of barium after. It was a fasting for 12 hours before so that barium tasted like a melted milk shake to my very hungry stomach at 11 am:-) They took pictures after that for about 30 minutes. This test is to see if the cancer has spread to any other parts of my body.
Than on to genetic testing. This test is to see if I have the gene that will cause recurrences in not only breast cancer but ovarian cancer as well. This is also an important test because if I test positive to this gene anyone that is blood related to me may also carry this gene, including men. Pretty much if this test comes back positive they will recommend a double mastectomy and down the line getting my ovaries and fallopian tubes taken out. It takes 10-14 days to get these results back.
Then off to my surgeons office to have them check out this fluid buildup. At this point there was no infection and they ultra sounded it and drained it. GROSS! They did put me on antibiotics and got me more pain killers.
They are putting my surgery that I was suppose to have on Thursday to get my port installed and to remove the other tissue off until they get the results of these tests. They are also putting off my start of chemo because I have to be recovered from my surgeries before they start. Once again, the waiting game!
So now for today. I was scheduled for my Chemo Class. This class is to give me information as to what treatments I am getting, and what to expect while having them. This was a day I was DREADING! Chemo is my worst fear right now! I heard everything I knew I was going to hear but did not want to hear it. I went through the whole class without crying so I am giving myself a huge pat on the back for that. While there I had the nurse and my oncologist look at the fluid that had built up over the weekend. It was pretty bad! I def have an infection and lots more fluid build up. It is crazy painful and I am worried about lymphodimia. My surgeon is getting back to me and hopefully will see me tomorrow to figure this all out.
At the end of the day, my MUGA scan came out that I have a super healthy heart!!!! I have to end on a positive note:-)
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