Happy Anniversary

Amanda,

Yesterday was our anniversary. And I miss you something awful. We’ve been married for 9 years now, but those 9 years have felt like a lifetime. I sit here and have trouble putting into words how much we’ve been through and how close I feel to you. Yet, even though we’ve been through so much, we stand right in the middle of the most trying time we’ll ever face.

I was watching a few minutes of football last week and of course there was pink all over the field, for breast cancer awareness. How cute. I even saw some kid wearing pink socks at Stewarts with his football jersey… and while both watching the game and seeing that kid, I felt angry. Like a deep, primordial anger that made me turn the TV off and have to walk out of the store. It surprised and scared me. I wanted him to take those socks off. Every time I saw a pink towel at the game, I wanted to turn the TV off. It got so unbearable, I had to miss all of the football games that week.

You know why? Because I almost feel like they think it’s cool. It’s an f’in joke to these people. Not so much in that they laugh about it, but so much in that they have absolutely no clue what their supporting, and are only wearing this crap because they either have to, or because it makes them feel or look cool. Whereas in reality, I look at people wearing this stuff and I get disgusted.

Cancer has destroyed my family, and there is nothing “cool” about it.

I wonder if that dude who is wearing that pink jersey knows what it’s like to go to work for a few weeks, having no idea whether or not his wife is going to live to see her next Christmas. Probably not. Does that kid wearing those socks know what it’s like to see his mom become so disfigured that she can’t look in the mirror anymore without becoming severely depressed?

That ref that just threw that pink flag for “holding”… I wonder if he knows what it’s like to watch his otherwise happy and loving wife spiral downward into a pit of depression so deep that she can’t sleep, eat, take care of her kids, leave the house, or face life? Does he know how it feels to watch that happen as he sits idly by, completely unable to help… to the point of hopelessness? To have to beg her to go to her final treatments because she simply can’t take the abuse anymore? To wake up at 1 AM to his wife uncontrollably sobbing because she just went to the bathroom and caught a glance of herself in the mirror? To watch her quickly lose everything in her life as she tries to make the physical and emotional pain go away? I wonder if he knows what it’s like to read posts on Facebook and just fill with envy at pretty much everyone who is living a normal, healthy life that isn’t completely full of sadness and pain, and know his wife is doing the same?

That lady wearing the “save the ta ta’s” shirt… does she know that finding a little lump smaller than her pinky’s fingernail could lead to gaining 30 pounds, removal of her hair, boobs, lymph nodes, ovaries, and uterus, permanent physical and psychological scars, premature menopause, loss of normal use and permanent pain and swelling of her right arm, a lifetime of daily physical therapy, 15 years of side effects from reduced / eliminated estrogen production, PTSD, and major, debilitating depression? HA! Save the ta ta’s… freakin hilarious. I guess I find it hard to laugh at that now.

Look, I know that this will pass, eventually. But I also know that our lives will never be the same again. And I know that you, I, and We will never be the same again. Like I said, we’ve been through a lot. But nothing like this. I hope that the next 9 years are better and more tranquil than the last one has been. Nobody will ever understand what we've been through, but I love you, and I will always be there for you.

Lots Going On in the Reed House

It has been a bit since my last post. There has been so much going on in the last couple of weeks we have been super busy. In my last post I was hoping to keep my hair until after the Jog for Jugs and Mothers Day. Well that did not end up happening. After my second round of chemo it started to fall out. By Friday it was coming out in handfuls and I could not take it anymore. I knew what had to be done but I was not looking forward to it at all. Bry was out with his coworkers so Sam came over and shaved my hair off. I cried my eyes out looking in the mirror for the first time. Bry came home just in time for my meltdown.  As hard as it was to lose my hair it was actually a relief. I feel like it was the last big step in this process. I have a bin full of cute hats and scarfs and 2 beautiful wigs that I have been rocking.

On Saturday we had our annual Jog for Jugs 5k and half marathon race. I was so overwhelmed with the outpouring of support of friends and family that showed up to do this race to support me. My brother designed beautiful shirts that pretty much was worn by almost 1/2 of the racers. They announced me as a survivor and I had a few tears come through at the beginning of the race.  Huge thanks to my Dad, Nicky, and Sam for all of your hard work working on the shirts and coordinating everything for the race. Thank you all who came out to support me as well!

Mothers Day was pretty low key this year. We went to Hoffmans Playland with my inlaws. The kids had a blast and we celebrated Bryan Paul's birthday as well. All in all it was a really great weekend.

This week was my 3rd round of chemo. This was the first week where I was not dreading going. I actually was looking forward to a little quiet time watching my Vampire Diaries. I found this to be another big step for me.  I went in to this week with an "I got this" attitude. I kept up with my meds after and got through my rough days. Now I get a week of normal, yeahhhhhh!

This past Thursday my sister in law Jessica hosted a 31 party in my honor. Tera who is a good friend of the family is a consultant and wanted to do this party and donate her commission to me. I am so proud to have so many people around to support me.  We had a blast at the party and I can not wait to get my bags:-)

These next couple of weeks are going to be a bit difficult. Bry has his Guard 2 weeks away in June. I will have a chemo session while he is gone. I was going to put it off a week but decided that I really want to be done with this process as soon as possible so I am going to push through.

Thank you all for all of your love and support. The meals have been such an amazing help and are so much appreciated.

Second Round of Chemo

I had my second round of chemo yesterday. I cried all morning not wanting to go. The worst part is I am gradually starting to lose my hair. I noticed it yesterday morning of all days. That did not help with the emotional junk of dealing with the chemo. I was hoping to hold out until Mothers Day before shaving, we will see. Mady asks me daily when I am going to lose my hair. She has also agreed to grow out her hair for Locks of Love which is a program where people donate their hair for people going through chemo. She will be rocking the bob for a few months but she is happy she is doing this for people like me.

I seem to be getting the hang of my side effects and are trying to take my meds to keep on top of it. It is a learning process:-)

I am so excited for the Jog for Jugs and Mothers Day this weekend. I am hoping to be feeling good enough for everything, and still have some hair;-)

HUGE shout out to Bry, and Sam who are not only my emotional support but help me out beyond words. Also to my parents and inlaws who have helped and loved me so very much. The meals have been a GODSEND! Thank you all for everything!

First week after chemo

Last Monday I had my first chemo treatment. It was pretty un eventful except for 1/2 way through going to the bathroom and peeing red because of what they call the "red devil" drug.  Bry came with me and was happy as a clam working on our new house plans. I went in there shaking like a leaf and scared out of my mind. They gave me an anti nausea med that had a sedative in it so I could chill out a bit. I finally settled down with my Vampire Diaries. That night was not too bad, I at my comfort food, turkey sub and slept all night. The next day I had my nulesta (sp?) shot that is suppose to take the white blood cells from my bone marrow and bring them back out to cover for all of the ones the chemo killed. That day I could not eat much and every smell bothered me beyond words. The day after my shot was the worst so far. I was nauseous all day and had these horrible bone aches from the shot the day before. I now know that I need to keep up on my meds or I am going to be a hurting puppy! I still have such a hard time with them pumping all of these crazy drugs into me that cause these horrible side effects that need more drugs to counter act them. Whatever I have to do to not have this happen again I am cool with but it still disturbed me quite a bit.

I had an amazing weekend with friends and was feeling super tired but well enough to go out.  I have my next treatment on Tuesday and shot on Thursday. I am worried about being well enough for the Jog for Jugs on Saturday that so many people are walking/running in my honor. I guess I will just have to put on my big girl panties and suck it up for the morning even if that means paying for it on Mother's Day.

Thank you to all at are coming out to support me at the Jog for Jugs! You have no idea how much it means to me and my family to have this much support!  Thank you to everyone who has been making us meals and sending gift cards. It makes our life so much easier and smoother! I hope you all understand how much we appreciate and need these! THANK YOU ALL!

Next Steps

Today I had appointments to see my Oncologist for my post op appointment as well as my plastic surgeon. For the last week I have been super nervous to the point of clenching my teeth till my face hurt and feeling sick to my stomach from stress. Now that I am done with the appointments I feel like a huge weight has been lifted off of my chest. At the oncologists office I was able to schedule my first 2 chemo appointments. I will be starting on Monday. I will be going every other week for 16 weeks. That puts me at finishing up chemo in the end of July. I am super happy that I will have at least 1 month of my summer without having chemo:-)  I got my port flushed and everything looked great there. Then we were off to the plastic surgeon. He said everything looks great and I am healing nicely. Also I FINALLY GOT MY DRAINS OUT!!!!!!!!!!!!!! I had them in for 5 weeks so it feels amazing to have them out. One less thing to be self conscious about. Now I only have to worry about my lack of ta tas.  Pretty much good news all around. I am now moving on to the next steps. One more step toward being done:-)

Now on to the not so good news. We have been hit by the stomach bug:-( I had it last week, Bry got it yesterday, and now Mady has it. She stayed with my inlaws last night and was up all night getting sick. Poor Nonna and Grandpa Paul!  Now we are waiting for the other 2 to get it. I am breaking out the Clorox wipes and am sanitizing everything.

New Surgery

Went to see my plastic surgeon today hoping to get my drains out but knowing it was not going to happen. I was right they are still in after 3 weeks! I also thought he was going to start filling up my spacers but that did not happen either:-( I also found out that I have to go in for another surgery on thursday to get a large blood blister cut out and stitched up because it was not healing right. That will be surgery number 4 in 3 months! It will all be good but I am looking forward to some good news!

This past weekend I spent with my amazing family celebrating my birthday and Easter. I am so lucky to have my family here to celebrate this year. So thankful!

Post Surgery

I had my double massectomy on March 12th. I was SUPER nervous going in to the surgery. Bryan made me a playlist of my favorite classical music to make me relax and calm myself down. It helped a ton! Isn't it funny how something as small as listening to music can calm you down.

Surgery went right as planned, yeahhhh! I was only able to have a liquid diet that night so I was super bummed after not eating for 24 hours and not getting my turkey sub Sam brought me:-( BTW Samantha Haldeman you are a saint! You have been with me and been my rock, other than Bryan, through this entire nightmare of a situation. I love you more than I can express and have no idea what I would have done without you going through this! Ok, sappy time;-) My night in the hospital was not as bad as last time. I actually slept during the times when I was not getting checked or when they were in and out with my roommate.

Now on to some relaxing, being pampered, and pain! I got my spot set up on the couch and did not move for days except for bathroom breaks when I needed help getting up. My parents had the kids for 10 days so I was able to focus on getting better.  Do you know how hard it is to sit on the couch for 2 weeks straight???? So not easy when you are use to being on the go.

So everything is still going well. I was hoping to get my drains out this past wed at my appt but that did not happen. I will be self conscious and uncomfortable through my bday and Easter weekend. Oh well, this is life. They will be taking them out on Mon, yeahhhhhhhhh! They will also start filling my spacers up so I won't feel like a 10 year old boy!

Jamer started daycare on Monday. I cried the entire day:-( The kido makes me crazy but I could not get past me being a stay at home mom with a kid in daycare. I know it is def the best thing for him but super tough on me when none of my kids have been in reg daycare and always in a co op preschool. Tues I felt better, it was a better transition in the morning and I was able to talk to his teachers. Bryan does drop off and pick up so I don't get that convo time. He is doing great!!!!!

I am still healing and feel like junk if I do to much during the day. I am taking it easy because I don't want to go backward in my recovery. My post op visit with my oncologist is April 16th. I will know the next steps from there.

Thank you so much for your prayers, love, and support. We started the meals back up and I hope you all know how much we appreciate and love your help. I am so behind on thank you letters/messages. You all have been spoiling me like crazy, thank you sooooooo much. I appreciate it more than you will ever know!

So Thankful

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!

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:

“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.

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.

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!

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:-)

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!

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:-)

GREAT NEWS!!!

So it has been a really exhausting couple of days. After having the surgery I thought I would be back on my feet much quicker than I did. My parents had the kids from Thurs, when I had the surgery, until Monday early afternoon. It was really nice to relax and concentrate on getting myself healed from the surgery without having to worry about the needs of 3 little people. I missed them like crazy but was VERY worried about getting them back when I was still suppose to take it easy and not lift more than 5lbs. Tell that to my very stubborn 2 year old!

I am getting back to normalish in the last few days. It is still exhausting getting the kids needs met along with trying to take it easy.

Today I had an appointment with my surgeon to have a check up as well as to get the results of  my lumpectomy and anxillary lymph node dissection. THEY TOOK OUT MY NASTY DRAIN! I will not go into details onto that, gross stuff,  but it was the best thing EVER! They ended up taking out 11 lymph nodes. That is actually a very small amount for this type of surgery. Out of those 11 only ONE was cancerous!!!! That is my amazing news! We caught this so early that it did not travel that far. Because of the fact that only 1 node was cancerous I am still at a stage 2 cancer. Now to the OK news. I mentioned that they had a more complicated surgery because the pathologist found something in my breast that did not look 100% OK. So they decided to take out what they saw to test it. So the results came back that they found Ductal Insitu which is the beginning of cancer cells but they are constricted to the duct.  So that means that they want to take out all of the tissue around that spot. They scheduled that for Next thurs the 31st when I am going to get my port installed for my chemo. Tomorrow I have a MUGA scan (I have no idea what that means other than it is done in the Nuclear Medicine unit) and on Friday I am going for a PET scan (they inject radioactive stuff into me and take a ton of scans) as well as genetic testing. If the genetic testing comes back positive they will prob recommend a double mastectomy as well as taking my ovaries out. We will cross that bridge if we get there!

So at the end of the day I am feeling good! Scared out of my mind about chemo, but at the moment I am doing ok!

The Surgery and visit to the Oncologist

The Surgery 

Heading to the hospital, starving, and would give ANYTHING for a glass of water I was so super nervous. I was definitely looking forward to having this cancer out of me but nervous about the surgery and the recovery. After we arrived at the hospital and got us right in to pre op. They gave me some pretty good meds and I was out like a light. Bry was in the waiting room reading his book from cover to cover. They told us that my surgery was suppose to take about an hour and a half.

So Bry sitting in the waiting room was getting quite nervous when it took over 3 hours for them to come out and give him an update. I guess they found something in there that did not look right so they had to remove that as well and made the surgery much longer than anticipated. Because of that they had to admit me for the night. We were not planning on this and were not prepared to stay the night. We made the best of it. I was starving and was so relieved when Andrea and Sam came over with a big fat turkey sub and some amazing peanut butter cookies. Yep, I was not having any problem with nausea, all I wanted was a gallon of water and my sub! I did end up getting a roommate for the night. They still let Bry stay with me. It was the worst night EVER!!!!! I was exhausted but pumped full of steroids from the surgery so I could not settle down. My IV alarm went off 6 times during the night. I had to get vitals checked every 4 hours, and my roommate snored so loud I could hear her through my ear plugs! Somehow Bry slept much better than I did:-) We got all of our discharge information and got out of there in time to get to our Oncologist appointment.

Oncologist Appointment 

Now here is where I start to go a bit fuzzy. I am overtired and hopped up on hydrocodon not a very good combo when going in to get the news we got. Pretty much I heard, you need a ton of tests done, chemo starts in 2 weeks, and you will lose your hair within the next month in a half. After than I pretty much shut down. It was a very emotional afternoon for me. I pretty much knew this was going to be the news we were going to get but now we have it all scheduled so it is very real. I am feeling better and accepting it a lot better today now that I have had a cup of coffee and a good nights sleep. I am going to hand the computer off to Bryan so that he can explain the Oncologist visit in a bit more detail:

The news the Oncologist gave us was only new in 2 respects (both good news):

1. Her H2N came back negative, which means that the cancer is less aggressive than if it was positive
2. The cancer tested positive for Estrogen receptors but negative for Progesterone receptors. This means that she's a good candidate for hormonal therapy after the chemo and radiation... meaning she has to take a pill for the next 5-10 years. However, it greatly reduces the probability of a recurrence and her prognosis becomes much, much better.

She also explained that we're at least in a Stage 2 situation. The results of the tests that are coming back this week and next will determine whether or not she's a Stage 3 (and I don't even want to think about the possibility of Stage 4). We signed up for more tests, such as the PET test to determine the extent of the growth, an EKG to get a baseline heart performance before chemo, blood-work, a genetic test, a chemo class, and many other appointments.

They gave us the timeline and recommended regimen for chemo. She will be undergoing 8 treatments of A/C Taxol every 2 weeks starting on February 5th. By my projection, that puts us at the end of chemo on May 14, where we'll start the radiation.

The Path Ahead of Us: A Letter From Me to You About Courage

Throughout our lives, there are times when it is abundantly clear we're at a crossroad. We simply look back at the path we've taken and intuitively understand that the path ahead is completely different than the one we're about to leave.

And some of those times, it looks bleak. It only takes a moment to understand that every feeling, every choice, every hurdle we've faced up until now, only existed to prepare us for this moment. The hills ahead are steeper, the roads are slicker, and the stakes are higher. But worst of all, most of it is shadowy and foreign. As we squint into the darkness ahead, the only real truth is that we'll never be the same again. It shakes us to our very core.

It's times like these that test the mettle of who we really are. We learn our true character; our internal worth. It's times like these that make cowards of the strong and heroes of the meek. Some fold like a tent. Others rise and emerge not only victorious, but humbled, and with a newly found respect for the path and the journey. A few never emerge at all.

But at some point in this journey, those that stand triumphant at the end realize that it's not about the conquest at all. They learn that our character is not defined by the height of the hills we climb, or the canyons we traverse. Instead, it's about walking the path with reverence and hope, all the while acknowledging, but not succumbing, to the existence of our fear.

As we now stand at our crossroads, remember this... the already defeated memorize the altitude of their highest peaks. The truly courageous look forward to the view at the top and smelling the flowers along the way.

Surgery

So today is the day that we have been waiting for. I have my lumpectomy and lymph nodes removed during surgery today. I do know that this is the easy part of this whole process but I am still quite nervous. My parents have the kidos so Bryan and I will have a quiet long weekend to recover. We are trying to keep things as normal as possible for the kids. They will be attending school even though my parents have to drive from Saratoga to bring them and pick them up. They are the BEST!!!! Either Bryan or I will update the blog this evening after we get home from my surgery.

FINALLY GOOD NEWS!

Heading to the hospital this morning for this ultrasound I was sick to my stomach and so nervous that I was shaking. If the test had come back and I had to do another biopsy I may not have been a candidate for the lumpectomy. I would have then had to get a mastectomy. I was fine with either but the healing time is much longer and a more difficult surgery than the lumpectomy. I also did not want to put off the surgery. I want these suckers out of my body ASAP! They have overstayed their welcome:-) As I said in my earlier post, my sister in law Jessica came with me to the appointment. Boy was I glad she was there. I was shaking and almost ready to lose my breakfast but she helped distract me and held my hand while they were doing the scan. She got quite the peep show this morning to start off the day! Long story short, the scan came back with nothing else besides the lump and the lymph nodes and I was declared stage 2 cancer because it has spread to my lymph nodes!!!! This was the first good news I have had in over 3 weeks! As Andrea texted me :-):-):-) is our happy dance. The MRI that I had was done at the wrong time of the month hormonally wise so that is what came up on the scan that they were concerned about. We are still on track for my surgery on Thursday and to see the oncologist on Friday. I can not express how much of a relief this morning was! Thank you so much Jessica for coming with me!

This may change ALOT

This weekend was a little tough because Bry was out of town for the National Guard. I was kept busy with my sister in laws and the kids. Alisa took Jamyson for the weekend and that was such an amazing help. I was able to spend some great quality time with Bryan Paul and Mady. Yesterday was Madys helper day at school so we packed up to go and have a fun filled morning with 13 4 year olds. I knew I was going to be getting the phone call with the results from the the biopsy and MRI sometime during the day. I had my phone on me the entire morning waiting for the call. I did finally get the call but thankfully school was done and I was just cleaning up the classroom. The secretary at my surgons office called and told me that another spot came up on the MRI. I also heard back from the surgeon and found out that the biopsy of the lymph node can back positive for cancer as well. We figured that was going to happen. Today I am back at the hospital for another ultrasound and maybe a biopsy if this other spot does not look right. If I have to have this biopsy my surgery will be put off until next week. I will update after my appointment. My sister in law Jess is on her way to be with me during this appointment.

Telling the Kids

This has been another week of doctors appointments. Wednesday I had an ultrasound and biopsy of a lymph node. Thursday I had an MRI to see if the cancer has spread. Today I had my pre-op physical. We are still waiting for the results of the biopsy and MRI. It does not seem fair to make people wait over holidays and weekends when you are dealing with these types of tests. As of right now my surgery for the lumpectomy is going to be on this Thursday the 17th and I will be meeting with my oncologist on Friday the 18th. Today we told the kids. I have been dreading this since we found out the news. We had started to have some behavior problems and we were thinking it was from so much change and emotions that we have been dealing with. We were very straightforward with them telling them that there was something in Mommy's body that should not be there and the doctors are working very hard to get it out. We explained that Mommy is going to be going to alot of doctor appointments and that I am going to be very tired. They said that they would be very good helpers to make it easier. Bryan Paul told Mady during dinner that Mommy is going to die. I am not sure how he came up with that and I was pretty upset that he thought that. Mady said she was going to fix me with her doctors kit she got for Christmas. I am thinking we are going to have lots of questions in the next couple of days. Today was also another m ilestone. I bought my first hats. I was waiting to do this until after I saw the oncologist. Mentally I was not ready for this step. Sam convinced me that I should get them because they look good, were on sale, and I can use them even if I don't lose my hair. Buying these hats and trying them on actually made me feel better. I can totally rock these hats:-)

More tests, more waiting

So this morning started out with me waking up super early, who can sleep in when you wake up with so many thoughts in your head???? I going out the door with enough time to stop by Starbucks on my way to see my radiologist. I typed my destination into my GPS on my phone and off I went. I got my much needed coffee and started to head to St. Peters listening to my GPS. After having the GPS take me in circles 3 times in a residential neighborhood I started to just go in the direction I thought I needed to go and by some stretch of the imagination got there directly on time. I can not stand being late to doctors appts! I did only get a few sips of coffee in and totally forgot to take my "happy" meds before I went, so not a good combo.

This appointment was for them to check to see if any of my lymph nodes did not look right. From earlier scans they had seen one that was not 100% so they did this check. They told me that if anything looked off they were going to do a biopsy on the worst looking node. Going in my hopeful attitude was they are going to do this scan, everything is going to look just peachy and off I go to relieve Bryan by taking the kids so he could go back to work. Well, that did not happen. I did have to have a biopsy. When they told me I took it pretty well considering lack of coffee:-) My last biopsy was not that bad so I was ready for this one. Holy macaroni did this one hurt:-( Then off to a mammogram of this spot after the biopsy, let's just say that was quite painful as well.

Now it is over and we should hear the results in the next few days as to if anything has spread to my lymph nodes. Today I have an MRI scan that is going to also check to see if this has spread and to see if there is anything to worry about on the other side. I will probly not hear back about the MRI scan until early next week. So pretty much we are doing the waiting game again.

I am just trying to keep busy. The kids do a very wonderful job of that. It is hard not to "do to much" when I have a 2 year old and 2 other very cuddly kidos. Last night we had plans to go out to dinner to celebrate Sam and Dan Haldeman's birthdays. My babysitter canceled at the last minute. Nonna to the rescue and we had an amazing time!!!! She came and watched the kids so that we could have a much needed night out. She then took my 2 littlest kidos to stay at her house for the night so that I didn't have to run around like a crazy person trying to get Bryan Paul on the bus, the other 2 dropped off and then try to make it to my appt in time. This worked out much better. Thank God for Nonna!

I had mentioned that if you have any questions that you can email Bryan, his email address is bryan.p.reed@gmail.com. Also Samantha Haldeman is also available for any questions. Her email is: shaldeman@nycap.rr.com. Please feel free to contact them for any reason.

I have added a spot at the top right of the blog if you would like to email subscribe to the blog. I am new to this and it is taking me some time to get the hang of how it all works.

The News

So if you have not already heard, I have been diagnosed with breast cancer. I decided to start this blog to keep everyone as up to date as possible. 

The Beginning 

So while preparing for dinner on Christmas eve I was going through my bi monthly "my boobs are killing me" stage. That is when I felt a lump that I had never felt before. I turned sheet white and had a serious panic moment. Bryan walked in the kitchen and immediately asked me what was wrong. I told him what I found and he assured me it was probably nothing and he would check it later. So on with our Christmas Eve celebrating. I put it out of my mind until that night when Bry said I was not imagining things and he felt it too. He right away did some research and we thought it was just a bump that would come and go or some other bump but suggested we get it checked out. At this point I texted my best friend, Sam freaking out and she calmed me down saying it was probably nothing as well. We got through Christmas day and the kids had a fabulous day of opening presents and enjoying dinner with Nonna and Grandpa Paul. The next morning I could not get it out of my head and Bry said if it is really bothering me to call the doctor to see if they could get me in to have it checked. I called my primary, I explained what was going on and they said they would call me back. Not to happy with that answer and knowing that they are not good at getting me in quickly when needed I called my OB. As always they were AMAZING and got me in within a few hours. Bry came with me and my Dad watched the kids.

So we headed to my OBs office. While on our way we got rear ended in Bryan's new truck. This day is not going so well. Because we were a bit late because of the accident we ended waiting for almost 1.5 hours because another individual was having an emergency. No worries I totally understand but gosh I felt like I was going to lose my lunch I was so nervous. We did end up seeing the dr and she said, yep it is something I want you to get an ultrasound and a mammogram. OK, still freaking out. I called quite a few places and the soonest they could get me in was JANUARY 12th!!!!!!!! Are you kidding me! So I made the appt thinking how in Gods name am I going to be able to wait this long to figure out what is going on. After talking to my Mom she suggested I go to the place that she goes to in Saratoga. I called them up and they got me an appt for New Years Eve, THANK GOD!!!!! So I only had to wait a few days to get in. Both Bry, Sam, my parents and my inlaws were convinced and worked very hard to convince me that it was nothing. All of the research we did for someone my age, healthy, with no history of breast cancer in their family said that 80%-90% it is either benign or a lump that would come and go during different times. I got to thinking that it was going to be OK and this was just a precautionary set of tests. 

 

So we got through to New Years Eve. My amazing sister-in-law Jane took my kids so that Bry could come with me to these tests with no questions asked. She had a day totally to herself but sacrificed a few hours to watch the kids for Bryan and I. Thanks Jane!!!!!! Off to Saratoga we go to get the mammogram and ultrasound. At this appointment they were going to be able to tell me if it is just a cyst or fatty tissue or if it is something that needed a biopsy. Well, it was not a cyst or fatty tissue. They said I needed a biopsy. OK total freak out again! They said they could get me in on Thurs in Glens Falls. Great, more waiting! They called my OB's office and they called around to see if anyone else in the area could get me in sooner. Nope! So we headed back and picked up the kids. While driving home I got a call asking how long it would take me to get to Glens Falls because they could do the biopsy in an hour. So I dropped Bry and the kids off at home and hauled ass to Glens Falls. They did the biopsy, it was not as bad as I thought it would be. I did not feel a thing because they used some good numbing meds. While there they told me that my mass was 1.7cm big but was not up against the chest wall. That really did not tell me much information because I decided to stay off of the internet and let Bry and Sam do the research for me and let me know what I need to know. They said that I will probably not get the results of the test until Friday at the earliest because of the holiday. GREAT more waiting!  

At this point I am freaking out like crazy! I called and informed my family and let them know the up to date information. My sister-in-law, Alisa suggested that I contact Dave's sister who battled breast cancer within the last couple of years. Laura has been an invaluable source of information and support. She has been able to explain things to me that I did not know anything about and give me information on what is to be coming up. She said I can call her night or day! I am so lucky to have someone with some much knowledge and has SURVIVED!!!!!

Along comes Thursday and I am having horrible anxiety attacks where I can barely breath. I was not sleeping and was constantly crying. I called my OB to ask for something to help me get through the next couple of days. She prescribed me Xanax and oh boy did that help! She told me that she was going to call by the end of the day on Thurs to check and see if they have gotten any of the results from the biopsy. Well at 3:30pm on Thursday, January 3rd I found out that my tumor tested positive for cancer. I FREAKED!!!!! I called Bryan hysterical and he came right home. I called Sam and she could barely understand what I was saying because I was freaking out. None of us could believe it. 

My OB set me up with a surgeon for the next day. This appointment was when we were going to find out the specifics of the biopsy and get a plan for the next steps. That afternoon Sam took Bryan Paul to her parents house to celebrate her and Dan's birthdays. My parents took Mady and Jamyson for the night. So off to this appointment we go. For some reason, maybe the Xanax:-), I was nervous but calmer. I listened to everything she said and only teared up once. I was hoping to go in to the appointment and they were going to say, "we are cutting this sucker out and on with life you will go". Well, that most definitely did not happen:-( I found out that I have Invasive Ductile Carcinoma Breast Cancer that measures 1.7cm. It is a grade 3 tumor which means that it is one of the faster growing tumors. We decided on that over the mastectomy. Because of the size I qualified to get a lumpectomy. They will not figure out what stage of cancer I have until after I have the lumpectomy. She pretty much told me that I will have the lumpectomy and then meet with the oncologist to make a plan for Chemotherapy and Radiation.

So we are to the present. The surgeon set me up with an ultrasound and maybe another biopsy if the cancer has spread to any of my lymph nodes. I will be going to do that tomorrow, Wed. On Thursday I have an MRI and that will also tell them if the cancer has spread. All of these tests are so that they know exactly what is going on in there before the surgery. I also have an appointment with my primary doctor on Friday to get a medical pre-op clearance to have this surgery. Pretty much I am going to be in the doctors offices every day for the next month. As of right now they tentatively scheduled my lumpectomy for the 17th or 18th depending on the results of the tests from the next 2 days. I will try and keep this blog up to date so that you get the information. 

This is some heavy stuff! There is a cure for Breast Cancer! I am going to make it through this. It is going to be a shitty couple of months but hopefully by summer time I will be cancer free. We have a very positive attitude going in to this. We also have such an amazing support system of friends and family. We would not be able to get through this without all of you. If you have any questions Bryan can answer them for you. Also, Samantha Haldeman knows just as much as Bry and I and can answer any questions as well. She has also set up a meal schedule for us. THANK YOU SO MUCH! This is the best help!