Ok, I had every intention of getting to this before now. The good news is it's not because I've been in bed hurting that I haven't written or updated. It's because I've been up and moving. In fact, I have been carrying my kids around and playing with them. My proudest moment from the last week has been working with Siri on writing her name, to which she is now doing all by herself (she's quite the smart little 3 year old). So that's the short version.
Going back. My surgery lasted for 7 hours. Longer than expected. No major complications, but my skin was thin which required them to go slower and I had some blood flow to one nipple (yes, I just said nipple- sorry if you are blushing) that wasn't as good as they would have liked. So I think they worked with that for awhile. We chose the U of I specifically because my chosen surgeon has had great success with nipple sparing mastectomies. They scrape the inside of the nipple out and test the pathology to make sure the cells are good before leaving them. Anyways, the surgery took a bit longer (an hour or so) than expected. Which I do believe freaked my usually very calm husband out just a bit. But since I was under, I knew nothing of the time.
I woke up in some pretty serious pain. My husband was there and I think my brother and dad were shortly after I woke up. I talked to them, pretty sure my eyes were closed though. The nurses controlled my pain as best as they could. I remember thinking that it was amazing how much you use your chest. I hurt trying to move in bed, and even taking a breath was somewhat painful. Praise the Lord for Dilaudid. That stuff just knocked me out. It's supposed to help with pain, but just put me to sleep instantly. Moving to the bathroom was very painful. Scooting to the side of the bed was almost impossible. I think they must have pumped me full of fluids because I think I spent the majority of the night trying to get into or out of the bathroom. I had one incident where the IV fell out and blood went everywhere while attempting to go to the bathroom. After having a cath in I felt weak, miserable, and wondered why the heck I did this. But it was short lived, and by morning I was moving better. I hate IV's so I guess that's one way to get it out.
I was placed in a double room on a cancer floor, which I was thankful my new friend, Sarah Corkery, gave me a heads up about. My roommate's name was Gabby. Not sure of her last name, but she was a sweet older woman who had a large tumor removed from her leg. She had a rare, terminal cancer that was generally found in children. She is probably in her sixties. And her attitude and sweetness were wonderful. She said she was glad they could use her to research and help children, since she had never had any of her own. I get a little teary thinking of her. As hard as I was trying to be discharged, she was trying to stay in the hospital because she had more help at home if she could stay a day or two longer. She'd often call for the bedpan in the middle of the night and then tell the night nurse how her roommate was in so much pain and they should check on me. She reminded me of my grandma quite a bit. She was kind and chatty. I feel a little bad because I was not in a chatty mood, but her and I had a few nice conversations. I told her I liked her attitude and she told me I was a pretty, young thing. Which made me laugh because I was shuffling by myself to the bathroom at 3:30 in the morning and I am sure that is not how I looked. If you pray, add Gabby to your prayers tonight. She has a 16 year old Yorkie she was missing and seemed like a very brave soul. I wish her the best. Because neither of us slept much that night, she was given morphine before I left on Friday and was sleeping so I didn't get to say goodbye. Having a roommate wasn't super enjoyable (more nurses in and out in the night), but she was a kind one.
I had to be able to eat and walk to get out of the hospital, and that I did. So RJ brought me home to my babies on Friday afternoon. The amazing thing was I could lift my arms almost instantly that day. That day is a bit fuzzy. The pain meds are probably a bit to blame for that, but other than a little nausea from the pain meds, I know I felt better than I expected to feel. I was warned I may have to sleep in a recliner. I really love my bed. So we built up my side with tons of pillows and I was able to sleep in my bed from the first day I was home. My kids were able to come and talk to me, and I was mobile enough to come out and see them too. I had a drain in on both sides. If you know me well, you know blood and stuff of that nature is not my forte. The drains needed to be stripped and emptied twice a day and then measured and recorded. My husband became a pro at doing this, and he did it all but once, when my friend, Heather, got to use her nursing skills. I'm so thankful for family and friends that are stronger than I am.
I'm still amazed at the amount of pain free movement I had, and how good I felt by Saturday. One of my mother in-laws was here helping right after I got out of the hospital, and I believe my kids and our dog terrified her because she was so worried they'd hurt me. God bless her. But honestly, I wasn't too concerned. I was able to talk with and get up to eat with them almost instantly. By Superbowl Sunday, my aunt had arrived and I was up watching the game with my entire family. Eating and enjoying life. My only issue was my pain meds needed to be switched as I felt they made me too tired. I decreased my dose voluntarily.
By Monday I was up and moving in the morning with the kids and getting into a routine of napping in the afternoons when they napped or went to school so could be up for dinner and the evenings. Literally 4 days post surgery, I was able to lift my arms and spend most of the day with my kids being mom. My amazing Aunt was here to make sure I was able to nap and rest when I needed. She did lots of dishes, laundry, and entertaining of my darling, yet difficult children.
So here I get to the the heart of why I'm writing. It took me awhile, I know. I am overwhelmed with the outpouring of love for me and my family. The amount of prayers said for me and my family. Completely and totally overwhelming. I cried in the car on the way to Iowa City the night before my surgery. Not because I was afraid or worried (I won't say that I had zero fear) but because my phone and my email blew up with messages of love and support. People I knew from high school and have followed a bit on Facebook, but hadn't had a conversation with in years took the time to write me. Not just write me, but make my heart feel full. My dear friends were begging to take my kids for playdates and bake us meals. It got to the point I was turning help away. Cards and gifts- beautiful heartwarming things filled my mailbox. People made me feel like what I was doing was brave. I bet I heard that a thousand times. Folks, there is some saying out there: "You'll never know how strong you are, until being strong is the only choice you have." -unknown. That's exactly how I felt through this whole thing. Not that I'm incredibly strong or brave, but given my situation, many would do the exact same thing. It wasn't an easy choice to have the surgery, but there really wasn't any other choice.
I'm humbled. My freezer is full of food baked with love. The amount of notes and cards received have been so overwhelming I fear I may never be able to respond to them the way I'd like. You see, I'm convinced the Lord has blessed me beyond measure. I may have drawn the short end on this one gene mutation, but HE has filled me up with people. People, who in an instant will drive me to a doctors appointment or take my children so I can rest. People who have offered prayers from afar, or to shovel my driveway. My honest assessment of why my recovery is so amazing: Prayers and love. From all over. I have been lifted up and healed amazingly. I am physically strong, which helps, but it still doesn't explain my recovery. I feel like it's nothing short of miraculous that I can carry my kids without pain meds less than two weeks post surgery. It's as though my body felt everyone of those prayers. I still have the scars and few bandages left, but those will fade and my plastic surgeon is working hard to make me look "normal" again. I cannot say I won't have a tired day here and there. But what I will walk away from this with is not the scars or the pain. It's the love.
My kids are amazing and still ask me if I'm feeling good today. Still waiting for my sweet, Asher to give me a good hug. He is gentle with me. Siri and Shai are very curious about my "ouchies", but they've been well cared for by family and friends. It hasn't been a cake walk having different people in and out and taking care of them. Goodness knows that Siri needs and wants here consistency. There's not a doubt in my head they've felt the love and prayers and have experienced the peace I've experienced. THANKS to each of you who's touched my children during this time.
My husband is amazing. The Wednesday my drains were removed and I had my expanders filled (for the reconstruction) was not a good day for me. It was long and more pain than I'd been experiencing. So I hurt, and then I was sad because I hurt. I feared I was taking a giant step back. I wanted a shower without those stupid drains. But after getting in, I realized very quickly it was a bad idea. Sobbing in the shower and in too much pain to finish washing my hair, R.J. finished washing my hair, dried me off, and then covered my wounds from the drainage tubes and put me to bed. He helped me to the bathroom after surgery and helped me wipe. It may be too much information for you all. Sorry, but on the Eve of Valentine's day, these are the moments you know you're truly loved. Ugly and broken. An amazing reflection of God's love for us. So thank you to all of you who have prayed for him and who have lifted his burden by helping with meals and entertaining the kids. I'm blessed by having a partner that loves me when I'm ugly.
Here's my take away. This experience has taught me a whole lot thanks to you all. Love wins. Be joyful, always. Be a good friend. Be a very good friend. In 30 seconds you can write a note that will lift someone up for the whole day, so do it. Pray for the people you say you'll pray for. God listens. Love on everyone's kids. It takes a village to raise kids, and those little gestures mean so much to both the child and the parent. Food is good, so bring it to those in need. Gifts that come from the heart change the heart. Be thoughtful and generous in giving. Be kind to everyone, and instill it in your children. 15 years from now the people you're kind to may return the favor in a kind note, a meal, or just a prayer. Again, love wins.
This experience isn't over. I have my post op check with the breast surgeon tomorrow and also meet with the plastic surgeon to continue to fill my expanders, so I can eventually get implants. So the journey towards recovery continues, but my recovery to this point is nothing short of miraculous. Thank you for the prayers and support. Please continue to lift us up and don't forget to pray for Gabby . A new friend shared this verse with me, so I will share it here.
And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 1 Peter 5:10
Thank you all for helping to teach me this experience will make me a better stronger person. You overwhelm me with LOVE. Happy Valentine's Day!
Wednesday, February 13, 2013
Sunday, January 27, 2013
Surgery
So I have debated putting this out there. Part of me feels like this is so private and personal, but there is this nagging that this may help someone. That there is by chance one person that hears about this and in hearing it takes a step that may change their future.
I know this sounds crazy, but I have always had this feeling that I wouldn't live that long. I am not mad or really even that saddened by it. Can't really even explain it. Just call it intuition. Weird and sounds morbid. But it shouldn't because it hasn't really ever scared me just a feeling. I will occasionally tell my husband something that I want at my funeral. Like a song I want or something. He is so mild mannered, I have never doubted that he will out live me.
I think part of it is that I am comfortable with death. I know WHO holds my future. And I guess, seeing my mom pass away while I was young made a profound impact. Her grace and toughness was laced with such a peace, it just made it seem not so scary. True peace that passes understanding.
As the last 5 years have flown by, life doesn't slow down a bit. Well, I have been blessed beyond measure in the last 5 years. It wasn't easy for us to become parents. A horrible struggle to say the very least. Infertility is a horrible, awful, gut wrenching thing that no one talks about. That is a story all of it's own. One that I will openly share with anyone. Because it is lonely. But out of that awful struggle, came the most beautiful baby boy. All the tests, shots, ultrasounds, and exams were worth it a million times over for this little guy. He looks like his daddy with the exception of he brilliant, blue eyes and the awful cow-lick at the front of his hairline. Those come from my side of the family. His heart is pure gold.
Once he was here everything changed. My heart grew larger and than I even knew was possible. There was this responsibility that I had never felt before. Time became that much more precious to me. I wanted that time with him. I have always known time is something you can't make more of. But savoring moments became that much more precious with him here. Two years flew by and he grew. He has always been the strong- silent type. He was busy climbing things and pulling things out of drawers and not forgetting a single thing!
Our struggle to have more children continued. More shots and failed IVF attempts. But my heart knew Asher needed a sibling. We got our foster/adoption license. Not really sure that was the direction we wanted to go, but just did it. A good friend said, "If you don't walk, God can't direct your path." So we went through the class and just "walked". Well direct our path He did. Received a call one August night at about 9:30pm and had our Siri in my arms the next day at 3pm. Craziest, yet most rewarding thing I have ever done. No doubt.
Adoption changed my life and my heart in a way nothing else could. It taught me so much about love. It taught me that love truly has no limits and blood means very little. Again, it in it's self is a whole story. But after having Asher, I didn't think my heart could possibly grow anymore, but it did. Life with Siri is a party. She lives big and passionately. Her gorgeous, brown eyes and long eye lashes will just draw you in and keep you guessing.
Things were just settling down after getting Siri and working through the adoption process, when we were blessed with another surprise. I was pregnant. I honestly, took an expired pregnancy test one day because I was feeling chubby. I had in my life time taken probably two dozen pregnancy tests, just hoping they would be positive. Well, this day, Asher who was 2 and Siri 8 months old were both napping. And I just thought why not? I have an old one in the cupboard. You can only imagine my surprise when it instantly went to positive. Couldn't even call my husband. I didn't think he would believe me. I was a good 8 weeks along already.
Well, two days after Christmas our Shai Noelle was born. She arrived on her daddy's birthday. Just the happiest baby ever. Content in everyway. Truly. She slept really quite well and was a good eater and just enjoyed the chaos of her brother and sister running around and dragging her along. As she grows, we get to see her silly self. She loves to laugh, and her hair in the mornings when she wakes up is seriously a sight to behold. Seriously the blonde wavy, curls are all over her face or sticking straight up in the back. Most darling thing ever. My heart had now more than tripled.
So, I had to give you the back story. Because it's important. It's the most important. This year I decided I needed to very serious with my doctor. I hadn't had a mammogram since before I was pregnant with Asher. Time had just flown by and doctors didn't seem too terribly worried. I was healthy. I had either been pregnant or nursing a baby for large chunks of time in the last 5 years, so I decided I needed to make sure that my doctor was on the same page. I wanted an MRI. You see my mom was diagnosed at 36 with breast cancer. I was 9 and my brother was 5. She passed away a couple weeks after I turned 15 years old. Her mom, my grandmother, I never met. She passes away when my mom was 18, I think. My mom didn't talk much about her. Only thing I really remember her saying was that she was sick a lot and apparently breast cancer was the cause.
Well, after talking about an MRI. My doctor said that she wanted me to go to Iowa City and meet with a geneticist before referring my for any testing. I agreed. Well, I met with a very kind, young geneticist that told me nothing surprising. My chance for breast and ovarian cancer is very high. She recommended that get the BRCA test. It looks for mutated genes that lead to extremely high risks of breast and ovarian cancer. After speaking with her, we knew that we wanted to go ahead with the testing. Knowledge is power, right? At least, I kept telling myself that. Of course, she said the results would take about 2 weeks and sometimes they come back faster. Well, I will admit that this was probably the hardest time for me. The not knowing. The waiting. The knowing that after talking with her, she was concerned for me. Well, 2 weeks came and went. The phone rang, I jumped. Nothing. My results took 3 and half weeks to get back. Long and awful weeks. I hadn't expected to be so anxious for the results.
This kind geneticist called me as I walked into teach a fitness class. I ignored the call. I couldn't find out on my way into that. So called her back after class. She told me I was BRCA1 positive. Positive meaning I have the mutation. For some reason, I was extremely calm as we spoke. The knowing seemed better. As I sat in the parking lot at the Rec Center, I listened and attempted to process what it all meant. What it meant for me, my kids, and my brother. I don't think I cried. Hung up and drove home. Told my husband and held it together for most of the evening before losing it.
This whole thing has brought up more memories of my Mom and her battle than I could have expected. I have memories of her and chemo and her and her mastectomy and the radiation that have been tucked away. I knew she was in pain, but she put her brave face on around us. I rarely think of the hard times when I think of her. For which I am beyond thankful. I now am a mother myself and it makes my heart hurt, beyond hurt to think of her having to hear the word cancer and look at my brother and I everyday knowing she was terminal. I could hardly look at my kids for days without getting teary-eyed and they hadn't even found a cancer cell in my body. No idea how she did it. You want to be there for your kids. Period. I hurt for her. I hurt for my kids thinking they may travel the same road I did. It doesn't really bother me, but I grew up fast and independently.
The month that followed was filled with research. I scheduled appointments with OB-GYN, breast health surgeons, and plastic surgeons. I wanted all information I could find. My husband also read everything he could get his hands on. With my mom being diagnosed so young and her mother also, we were told by my new oncologist. Yes, I have an Oncologist. Not something you expect as a 34 year old. She was very, very kind. In fact, apologized repeatedly for my mutated gene- I had to tell her to stop being sorry- it wasn't her fault.
She was very, very clear that BRCA1 mutations aren't a joke. My chance at cancer in my life-time by all charts is something like 80 plus percent. In her professional opinion, that underestimated my risk. Based on family history, the cancer appears to hit young and aggressively. I had two options. Monitor closely both breasts and ovaries. Like 6 month appointments with mammograms and MRI's and 3 month appointments with vaginal ultrasounds and blood work. With this option we were waiting for cancer to appear and catch it early. OR bilateral preventative mastectomy and oophorectomy (removal of my ovaries). With this option my chances of cancer go way down. Almost to a "normal" person. This quite possibly saves me from the depths of chemo and radiation, which with a diagnosis will probably be a must even if we catch it early.
I struggled and struggled with the decision. As you can read from my previous post. I cried wanting a crystal ball. I just wanted 2 more years guaranteed with no cancer. So my kids could get a bit bigger and walk and not need to be carried or picked up quite so much. Just a couple more cancer free years and they would be at school more. Not at home watching me in pain. The oncologist and all the surgeons agreed it would be nice to wait, but the time to do the surgery is when all the scans are clean. Avoiding chemo and staying cancer free was the goal. Let me say that this was a personal decision. Many people would choose differently. Everyone feels differently. Everyone I told had their own opinions. Which they are entitled to. Based on all the information and my experiences it seemed that my decision was pretty clear. So here goes.
Scheduled surgery. 10 days away. Scared yes. But confident in my decision. I want to see my gorgeous children graduate. I want to see them get married. Shop for wedding dresses. Stare into the eyes of my grandchildren. All things my mother never got to do. So throwing my fear aside (sometimes) and holding on to an attitude of gratefulness. Grateful for the technology that allows me the knowledge the this gene exists and the power to do something to give myself a fighting chance at avoiding the pain I watched my mom go through.
The unknown is the scariest part. No one can tell you what recovery will look like. It's different for everyone. Some are down for months and live on pain meds. Some are up and about in two weeks. I expect two weeks of major pain. I pray my two year old understands why I can't pick her up and that my 3 year old walks herself into timeouts-ya right. My sweet 5 year old cries when I cry, so I will be wearing my bravest face for him. The reconstruction part takes time. Months most likely. They seem to think that they can hide the scars and make me look womanish again (probably more womanish than I am currently). I have been told you get used to the lack of feeling in your chest area. Most of the women I have talked to that have experienced this are completely numb in the chest are permanently. It will be a struggle to get strength back in my chest area. So much for being able to do 50 push ups on my toes! Back to square one!
I know the reality is that there is a reason the Lord has put me in this position. He seems to prune me a lot (literally this time). Heard a great sermon once on how vines that are pruned produce the best fruit. I am praying that the fruit comes after the pruning. Until then I will rest in my Fortress.
I make it occasionally to a mom's group at our church. It's filled with wisdom from others who have done motherhood and came out alive. ;) We had a speaker last week. She read this verse repeatedly. We closed our eyes and let it soak in. She asked us to let the words speak to us and hold onto the words the meant something. Here is the verse...
Psalms 62:5-8
5 Find rest, O my soul, in God alone; my hope comes from him. 6 He alone is my rock and my salvation; he is my fortress, I will not be shaken. 7 My salvation and my honor depend on God; he is my mighty rock, my refuge. 8 Trust in him at all times, O people; pour out your hearts to him, for God is our refuge. "Selah"
I have a Fortress that will give me rest. I will trust him in this valley. I hope if you are reading this you find peace in these words. I plan to cling tightly to them in the days and weeks to come. When I cannot hold a book because it hurts too bad, I will cling to my Rock. And if I don't, remind me. I have a God that loves me in my pain, with my scars, even when I cannot shower. Dreading the not showering while the drains are in! Yucko.
Praying that I come out of this pruned and producing beautiful fruit. Rested and strong. Thank you for listening. My largest reason for putting this out there is that I thought it may help someone. I am grateful for the knowledge I gained by this genetic test. It has given me the opportunity to make the first move on my terms. Cancer is an ugly word and I am grateful that I can avoid having to use it right now.
If you are the praying type, please pray for my family. Pray for Asher that he can be brave and not worried. Pray for Siri that she can understand why mommy can't pick her up and that she can control her bounciness around me for a couple weeks. Pray for Shai. Pray for sweet, Shai that in her young mind she doesn't think I am ignoring her or neglecting her because I can't hold or pick her up. Pray for RJ as he will be Mr. Mom for a couple weeks- pray for patience and energy. Pray for all my friends and family as they have blessed me a thousand times over with kind words, meals, childcare, zip-up sports bras (you know you have good friends when they find and buy you zip up sports bras), and all kids of zip up clothes.
Thank you. Summer
I know this sounds crazy, but I have always had this feeling that I wouldn't live that long. I am not mad or really even that saddened by it. Can't really even explain it. Just call it intuition. Weird and sounds morbid. But it shouldn't because it hasn't really ever scared me just a feeling. I will occasionally tell my husband something that I want at my funeral. Like a song I want or something. He is so mild mannered, I have never doubted that he will out live me.
I think part of it is that I am comfortable with death. I know WHO holds my future. And I guess, seeing my mom pass away while I was young made a profound impact. Her grace and toughness was laced with such a peace, it just made it seem not so scary. True peace that passes understanding.
As the last 5 years have flown by, life doesn't slow down a bit. Well, I have been blessed beyond measure in the last 5 years. It wasn't easy for us to become parents. A horrible struggle to say the very least. Infertility is a horrible, awful, gut wrenching thing that no one talks about. That is a story all of it's own. One that I will openly share with anyone. Because it is lonely. But out of that awful struggle, came the most beautiful baby boy. All the tests, shots, ultrasounds, and exams were worth it a million times over for this little guy. He looks like his daddy with the exception of he brilliant, blue eyes and the awful cow-lick at the front of his hairline. Those come from my side of the family. His heart is pure gold.
Once he was here everything changed. My heart grew larger and than I even knew was possible. There was this responsibility that I had never felt before. Time became that much more precious to me. I wanted that time with him. I have always known time is something you can't make more of. But savoring moments became that much more precious with him here. Two years flew by and he grew. He has always been the strong- silent type. He was busy climbing things and pulling things out of drawers and not forgetting a single thing!
Our struggle to have more children continued. More shots and failed IVF attempts. But my heart knew Asher needed a sibling. We got our foster/adoption license. Not really sure that was the direction we wanted to go, but just did it. A good friend said, "If you don't walk, God can't direct your path." So we went through the class and just "walked". Well direct our path He did. Received a call one August night at about 9:30pm and had our Siri in my arms the next day at 3pm. Craziest, yet most rewarding thing I have ever done. No doubt.
Adoption changed my life and my heart in a way nothing else could. It taught me so much about love. It taught me that love truly has no limits and blood means very little. Again, it in it's self is a whole story. But after having Asher, I didn't think my heart could possibly grow anymore, but it did. Life with Siri is a party. She lives big and passionately. Her gorgeous, brown eyes and long eye lashes will just draw you in and keep you guessing.
Things were just settling down after getting Siri and working through the adoption process, when we were blessed with another surprise. I was pregnant. I honestly, took an expired pregnancy test one day because I was feeling chubby. I had in my life time taken probably two dozen pregnancy tests, just hoping they would be positive. Well, this day, Asher who was 2 and Siri 8 months old were both napping. And I just thought why not? I have an old one in the cupboard. You can only imagine my surprise when it instantly went to positive. Couldn't even call my husband. I didn't think he would believe me. I was a good 8 weeks along already.
Well, two days after Christmas our Shai Noelle was born. She arrived on her daddy's birthday. Just the happiest baby ever. Content in everyway. Truly. She slept really quite well and was a good eater and just enjoyed the chaos of her brother and sister running around and dragging her along. As she grows, we get to see her silly self. She loves to laugh, and her hair in the mornings when she wakes up is seriously a sight to behold. Seriously the blonde wavy, curls are all over her face or sticking straight up in the back. Most darling thing ever. My heart had now more than tripled.
So, I had to give you the back story. Because it's important. It's the most important. This year I decided I needed to very serious with my doctor. I hadn't had a mammogram since before I was pregnant with Asher. Time had just flown by and doctors didn't seem too terribly worried. I was healthy. I had either been pregnant or nursing a baby for large chunks of time in the last 5 years, so I decided I needed to make sure that my doctor was on the same page. I wanted an MRI. You see my mom was diagnosed at 36 with breast cancer. I was 9 and my brother was 5. She passed away a couple weeks after I turned 15 years old. Her mom, my grandmother, I never met. She passes away when my mom was 18, I think. My mom didn't talk much about her. Only thing I really remember her saying was that she was sick a lot and apparently breast cancer was the cause.
Well, after talking about an MRI. My doctor said that she wanted me to go to Iowa City and meet with a geneticist before referring my for any testing. I agreed. Well, I met with a very kind, young geneticist that told me nothing surprising. My chance for breast and ovarian cancer is very high. She recommended that get the BRCA test. It looks for mutated genes that lead to extremely high risks of breast and ovarian cancer. After speaking with her, we knew that we wanted to go ahead with the testing. Knowledge is power, right? At least, I kept telling myself that. Of course, she said the results would take about 2 weeks and sometimes they come back faster. Well, I will admit that this was probably the hardest time for me. The not knowing. The waiting. The knowing that after talking with her, she was concerned for me. Well, 2 weeks came and went. The phone rang, I jumped. Nothing. My results took 3 and half weeks to get back. Long and awful weeks. I hadn't expected to be so anxious for the results.
This kind geneticist called me as I walked into teach a fitness class. I ignored the call. I couldn't find out on my way into that. So called her back after class. She told me I was BRCA1 positive. Positive meaning I have the mutation. For some reason, I was extremely calm as we spoke. The knowing seemed better. As I sat in the parking lot at the Rec Center, I listened and attempted to process what it all meant. What it meant for me, my kids, and my brother. I don't think I cried. Hung up and drove home. Told my husband and held it together for most of the evening before losing it.
This whole thing has brought up more memories of my Mom and her battle than I could have expected. I have memories of her and chemo and her and her mastectomy and the radiation that have been tucked away. I knew she was in pain, but she put her brave face on around us. I rarely think of the hard times when I think of her. For which I am beyond thankful. I now am a mother myself and it makes my heart hurt, beyond hurt to think of her having to hear the word cancer and look at my brother and I everyday knowing she was terminal. I could hardly look at my kids for days without getting teary-eyed and they hadn't even found a cancer cell in my body. No idea how she did it. You want to be there for your kids. Period. I hurt for her. I hurt for my kids thinking they may travel the same road I did. It doesn't really bother me, but I grew up fast and independently.
The month that followed was filled with research. I scheduled appointments with OB-GYN, breast health surgeons, and plastic surgeons. I wanted all information I could find. My husband also read everything he could get his hands on. With my mom being diagnosed so young and her mother also, we were told by my new oncologist. Yes, I have an Oncologist. Not something you expect as a 34 year old. She was very, very kind. In fact, apologized repeatedly for my mutated gene- I had to tell her to stop being sorry- it wasn't her fault.
She was very, very clear that BRCA1 mutations aren't a joke. My chance at cancer in my life-time by all charts is something like 80 plus percent. In her professional opinion, that underestimated my risk. Based on family history, the cancer appears to hit young and aggressively. I had two options. Monitor closely both breasts and ovaries. Like 6 month appointments with mammograms and MRI's and 3 month appointments with vaginal ultrasounds and blood work. With this option we were waiting for cancer to appear and catch it early. OR bilateral preventative mastectomy and oophorectomy (removal of my ovaries). With this option my chances of cancer go way down. Almost to a "normal" person. This quite possibly saves me from the depths of chemo and radiation, which with a diagnosis will probably be a must even if we catch it early.
I struggled and struggled with the decision. As you can read from my previous post. I cried wanting a crystal ball. I just wanted 2 more years guaranteed with no cancer. So my kids could get a bit bigger and walk and not need to be carried or picked up quite so much. Just a couple more cancer free years and they would be at school more. Not at home watching me in pain. The oncologist and all the surgeons agreed it would be nice to wait, but the time to do the surgery is when all the scans are clean. Avoiding chemo and staying cancer free was the goal. Let me say that this was a personal decision. Many people would choose differently. Everyone feels differently. Everyone I told had their own opinions. Which they are entitled to. Based on all the information and my experiences it seemed that my decision was pretty clear. So here goes.
Scheduled surgery. 10 days away. Scared yes. But confident in my decision. I want to see my gorgeous children graduate. I want to see them get married. Shop for wedding dresses. Stare into the eyes of my grandchildren. All things my mother never got to do. So throwing my fear aside (sometimes) and holding on to an attitude of gratefulness. Grateful for the technology that allows me the knowledge the this gene exists and the power to do something to give myself a fighting chance at avoiding the pain I watched my mom go through.
The unknown is the scariest part. No one can tell you what recovery will look like. It's different for everyone. Some are down for months and live on pain meds. Some are up and about in two weeks. I expect two weeks of major pain. I pray my two year old understands why I can't pick her up and that my 3 year old walks herself into timeouts-ya right. My sweet 5 year old cries when I cry, so I will be wearing my bravest face for him. The reconstruction part takes time. Months most likely. They seem to think that they can hide the scars and make me look womanish again (probably more womanish than I am currently). I have been told you get used to the lack of feeling in your chest area. Most of the women I have talked to that have experienced this are completely numb in the chest are permanently. It will be a struggle to get strength back in my chest area. So much for being able to do 50 push ups on my toes! Back to square one!
I know the reality is that there is a reason the Lord has put me in this position. He seems to prune me a lot (literally this time). Heard a great sermon once on how vines that are pruned produce the best fruit. I am praying that the fruit comes after the pruning. Until then I will rest in my Fortress.
I make it occasionally to a mom's group at our church. It's filled with wisdom from others who have done motherhood and came out alive. ;) We had a speaker last week. She read this verse repeatedly. We closed our eyes and let it soak in. She asked us to let the words speak to us and hold onto the words the meant something. Here is the verse...
Psalms 62:5-8
5 Find rest, O my soul, in God alone; my hope comes from him. 6 He alone is my rock and my salvation; he is my fortress, I will not be shaken. 7 My salvation and my honor depend on God; he is my mighty rock, my refuge. 8 Trust in him at all times, O people; pour out your hearts to him, for God is our refuge. "Selah"
I have a Fortress that will give me rest. I will trust him in this valley. I hope if you are reading this you find peace in these words. I plan to cling tightly to them in the days and weeks to come. When I cannot hold a book because it hurts too bad, I will cling to my Rock. And if I don't, remind me. I have a God that loves me in my pain, with my scars, even when I cannot shower. Dreading the not showering while the drains are in! Yucko.
Praying that I come out of this pruned and producing beautiful fruit. Rested and strong. Thank you for listening. My largest reason for putting this out there is that I thought it may help someone. I am grateful for the knowledge I gained by this genetic test. It has given me the opportunity to make the first move on my terms. Cancer is an ugly word and I am grateful that I can avoid having to use it right now.
If you are the praying type, please pray for my family. Pray for Asher that he can be brave and not worried. Pray for Siri that she can understand why mommy can't pick her up and that she can control her bounciness around me for a couple weeks. Pray for Shai. Pray for sweet, Shai that in her young mind she doesn't think I am ignoring her or neglecting her because I can't hold or pick her up. Pray for RJ as he will be Mr. Mom for a couple weeks- pray for patience and energy. Pray for all my friends and family as they have blessed me a thousand times over with kind words, meals, childcare, zip-up sports bras (you know you have good friends when they find and buy you zip up sports bras), and all kids of zip up clothes.
Thank you. Summer
Monday, November 19, 2012
It's for my kids...
Deep breath. It's amazing what kids will do to your thought process and how every ounce of major decisions goes back to them. How long of a nap should they take? Are they eating enough vegetables? Why is his nose always running? The list is endless. I have been brought to my knees repeatedly in the last month over decisions. I wish it were decisions over nap times and food.
I have a silly mutated gene. It's the BRCA1 gene and it's mutated. It's a protective gene and mine is messed up. Problem with it is that with this mutation you are basically a ticking time bomb for breast and/or ovarian cancer. Worse still because both my mom and grandma were diagnosed and passed away at very young ages from this mutation (or at least so it appears-this science wasn't available to them sadly). As thankful as I am for the technology, I am also so very confused as to what the best option for me is. Better yet what the best option for my family is.
I watched my mom battle this awful disease. She was amazing. So tough, but she never focused on the stupid disease. I rarely remember her sick unless I really try to think about. Then it breaks my heart. I know she put on a tough face for us kids. Man, it couldn't have been easy. I remember helping her replace her bandages after her mastectomy. They were bloody and oozy. She shaved her head before the chemo took all her hair. And I remember laughing our butts off when she was baking cookies and the heat from the oven melted the front of her wig. She laughed. Inside I am sure she wanted to punch something. Here she was with no hair, a wig, and now a melted wig that probably cost a pretty penny. But she laughed. She was amazing. I can't imagine being in a fight for your life and looking at your kids everyday knowing you might not be there to see them graduate, get married, or see your grandbabies. It puts knots in my stomach to think these thoughts as I look at my own kids. I miss my mom horrible still and it's been almost 20 years.
Back to my decision. Met with an oncologist, who by the way is the kindest doctor I have every met. Basically my prognosis isn't great. Most people with this gene mutation get cancer before they are 70, but her assumption is mine most likely would be much earlier based on family history. Early like in my 30's. Like tomorrow. Who knows? Now what. They can watch me close using MRI and mammograms, but that doesn't prevent it. If we want to prevent it they have to start cutting. Luckily, I am not attached to my breasts. They are small and have served their purpose in nursing my children. My ovaries have produced two beautiful biological children (and one beautiful adopted one). But have also served their purpose. Sounds like an easy decision until I really start thinking about. Basically everything that makes me female would be scraped out of my body. Am I prepared to be an "it?" My poor husband. He is a champ. Clearly wasn't a boob guy to start with, since he married me, but not sure bargained for this. I can honestly say that I am sure when he said, "for better or worse," he wasn't thinking we would be talking about reconstructing nipples out of my stomach skin. I am blessed to have him.
Still this isn't the toughest part of my decision. My precious kiddos. I want nothing more for them than wonderful childhood. One where worrying about what's going on with Mom is the very last thing on their mind. One where their mom is fun and active and plays with them. One where their mom swoops in and picks them up when they stumble and need a hug. One where their mom is strong and unflappable. Ok, they know I am far from unflappable. But you get my drift. The last thing I want is to look at my 5 year old and see concern on his face for my well being.
So do I go have a major surgery to avoid battling cancer at some point. Sure, right? What about my two year old? She still needs to be carried through parking lots and wrestled into her carseat. She falls and the only real remedy is me picking her up and kissing her ouchie. How do I explain to her "mommy can't pick you up for awhile because she had her boobs cut off so that she might be alive to see you graduate." I know that sounds harsh, but it's the truth. Have you had a toddler standing at your feet with their little arms lifted in the air, while they beg "up!"? I can think of few things worse than not being physically able to pick up your own child.
For that matter my 3 year old in all her naughtiness loves nothing more than to hug you tight. Like the kind of hugs that squeeze every ounce of air out of you, but fill your heart with pure goodness. This surgery steals that for awhile. Who is going to pick up my two year old or squeeze my 3 year old tight? Who is going to throw the ball around to my 5 year old? He is my worrier. I see so much of my personality in him. He picks up on everything. Everything. He is tender-hearted and hates to see others in pain. How do I shelter him from those days post-surgery when I hurt. I have to be so tight-lipped around him. I say nothing about me and cancer. He has been throwing the word cancer around lately. I know he is picking up on stuff. He asked if that is why Bentley (our sweet dog) died and if that is why Grandma Candi is in heaven. I hate the idea of making him grow up faster than he should. I know a thing or two about that. It makes my heart hurt.
If I could do this surgery and freeze time for my kids, so they wouldn't feel any of the pain. I would do the surgery in a heartbeat. I know that it would be worse to have a 6,4,and 3 year old and be battling cancer with chemo on top of surgery. I do know that. As we waited at the Cancer Center for our appointment. I saw all those bald heads and gray faces and it hit home. Surgery just sounds so much easier looking at it from the outside. BUT life never stops. I still have snack days at preschool, nursery duty at church, and laundry (and more laundry). Who is going to do all that stuff if I am recovering from "elective-ish" surgery? So many kind, wonderfully, kind people have offered to help. It fills my heart. But all of these people have lives that keep going too. They have soccer practices to get their own kids too or jobs that don't allow for lots of time off. Letting go of control, especially in regards to my kids is hard. It's my job. It's what I do all day, everyday. I haven't been away from them for more than one night ever. (That's not necessarily because I haven't wanted a couple nights away- but finding care for 3 young kids isn't easy or cheap). Some people earn bonuses or reward trips or all kinds of awards, but I am hoping my reward is 3 kind, productive, God-loving adults that know they are loved.
So how do we decide when to do this surgery or surgeries. I guess the fact is that we will have to do surgery at sometime. I most likely can't avoid this cancer if we don't and if I get cancer, this is what they will do then anyways. But how do I know when is best. Can I hold out until my kids are in school all day or until at least some of them are in school? Is that gamble worth it? I am tired of being scared. I am not scared of the cancer really and dying doesn't scare me really either. Not to sound morbid, but it doesn't. But the thought of leaving my kids without a mom drops me to my knees and in an instant brings tears to my eyes. I don't know what we will decide. But whatever it is, I can promise it is for my ki
Deep breath. It's amazing what kids will do to your thought process and how every ounce of major decisions goes back to them. How long of a nap should they take? Are they eating enough vegetables? Why is his nose always running? The list is endless. I have been brought to my knees repeatedly in the last month over decisions. I wish it were decisions over nap times and food.
I have a silly mutated gene. It's the BRCA1 gene and it's mutated. It's a protective gene and mine is messed up. Problem with it is that with this mutation you are basically a ticking time bomb for breast and/or ovarian cancer. Worse still because both my mom and grandma were diagnosed and passed away at very young ages from this mutation (or at least so it appears-this science wasn't available to them sadly). As thankful as I am for the technology, I am also so very confused as to what the best option for me is. Better yet what the best option for my family is.
I watched my mom battle this awful disease. She was amazing. So tough, but she never focused on the stupid disease. I rarely remember her sick unless I really try to think about. Then it breaks my heart. I know she put on a tough face for us kids. Man, it couldn't have been easy. I remember helping her replace her bandages after her mastectomy. They were bloody and oozy. She shaved her head before the chemo took all her hair. And I remember laughing our butts off when she was baking cookies and the heat from the oven melted the front of her wig. She laughed. Inside I am sure she wanted to punch something. Here she was with no hair, a wig, and now a melted wig that probably cost a pretty penny. But she laughed. She was amazing. I can't imagine being in a fight for your life and looking at your kids everyday knowing you might not be there to see them graduate, get married, or see your grandbabies. It puts knots in my stomach to think these thoughts as I look at my own kids. I miss my mom horrible still and it's been almost 20 years.
Back to my decision. Met with an oncologist, who by the way is the kindest doctor I have every met. Basically my prognosis isn't great. Most people with this gene mutation get cancer before they are 70, but her assumption is mine most likely would be much earlier based on family history. Early like in my 30's. Like tomorrow. Who knows? Now what. They can watch me close using MRI and mammograms, but that doesn't prevent it. If we want to prevent it they have to start cutting. Luckily, I am not attached to my breasts. They are small and have served their purpose in nursing my children. My ovaries have produced two beautiful biological children (and one beautiful adopted one). But have also served their purpose. Sounds like an easy decision until I really start thinking about. Basically everything that makes me female would be scraped out of my body. Am I prepared to be an "it?" My poor husband. He is a champ. Clearly wasn't a boob guy to start with, since he married me, but not sure bargained for this. I can honestly say that I am sure when he said, "for better or worse," he wasn't thinking we would be talking about reconstructing nipples out of my stomach skin. I am blessed to have him.
Still this isn't the toughest part of my decision. My precious kiddos. I want nothing more for them than wonderful childhood. One where worrying about what's going on with Mom is the very last thing on their mind. One where their mom is fun and active and plays with them. One where their mom swoops in and picks them up when they stumble and need a hug. One where their mom is strong and unflappable. Ok, they know I am far from unflappable. But you get my drift. The last thing I want is to look at my 5 year old and see concern on his face for my well being.
So do I go have a major surgery to avoid battling cancer at some point. Sure, right? What about my two year old? She still needs to be carried through parking lots and wrestled into her carseat. She falls and the only real remedy is me picking her up and kissing her ouchie. How do I explain to her "mommy can't pick you up for awhile because she had her boobs cut off so that she might be alive to see you graduate." I know that sounds harsh, but it's the truth. Have you had a toddler standing at your feet with their little arms lifted in the air, while they beg "up!"? I can think of few things worse than not being physically able to pick up your own child.
For that matter my 3 year old in all her naughtiness loves nothing more than to hug you tight. Like the kind of hugs that squeeze every ounce of air out of you, but fill your heart with pure goodness. This surgery steals that for awhile. Who is going to pick up my two year old or squeeze my 3 year old tight? Who is going to throw the ball around to my 5 year old? He is my worrier. I see so much of my personality in him. He picks up on everything. Everything. He is tender-hearted and hates to see others in pain. How do I shelter him from those days post-surgery when I hurt. I have to be so tight-lipped around him. I say nothing about me and cancer. He has been throwing the word cancer around lately. I know he is picking up on stuff. He asked if that is why Bentley (our sweet dog) died and if that is why Grandma Candi is in heaven. I hate the idea of making him grow up faster than he should. I know a thing or two about that. It makes my heart hurt.
If I could do this surgery and freeze time for my kids, so they wouldn't feel any of the pain. I would do the surgery in a heartbeat. I know that it would be worse to have a 6,4,and 3 year old and be battling cancer with chemo on top of surgery. I do know that. As we waited at the Cancer Center for our appointment. I saw all those bald heads and gray faces and it hit home. Surgery just sounds so much easier looking at it from the outside. BUT life never stops. I still have snack days at preschool, nursery duty at church, and laundry (and more laundry). Who is going to do all that stuff if I am recovering from "elective-ish" surgery? So many kind, wonderfully, kind people have offered to help. It fills my heart. But all of these people have lives that keep going too. They have soccer practices to get their own kids too or jobs that don't allow for lots of time off. Letting go of control, especially in regards to my kids is hard. It's my job. It's what I do all day, everyday. I haven't been away from them for more than one night ever. (That's not necessarily because I haven't wanted a couple nights away- but finding care for 3 young kids isn't easy or cheap). Some people earn bonuses or reward trips or all kinds of awards, but I am hoping my reward is 3 kind, productive, God-loving adults that know they are loved.
So how do we decide when to do this surgery or surgeries. I guess the fact is that we will have to do surgery at sometime. I most likely can't avoid this cancer if we don't and if I get cancer, this is what they will do then anyways. But how do I know when is best. Can I hold out until my kids are in school all day or until at least some of them are in school? Is that gamble worth it? I am tired of being scared. I am not scared of the cancer really and dying doesn't scare me really either. Not to sound morbid, but it doesn't. But the thought of leaving my kids without a mom drops me to my knees and in an instant brings tears to my eyes. I don't know what we will decide. But whatever it is, I can promise it is for my ki
Thursday, April 19, 2012
Where to start?
So I have been wanting to start blogging forever. More as an outlet for myself, as I am unsure that anyone will ever get the chance or want to read anything I write. Hence the title, where to start? This is a theme today. My kitchen sits full of dishes and crumbs from lunch and pieces of playdough drying to floor from playing this morning. That overwhelming feeling of where to start? So today I start this, instead of the kitchen.
My three beautiful children and busy playing and napping. Asher is 4 and a half, Siri is 2 and half, and Shai is 15 months. They are wonderfully unique and fill my days will laughter, crying, screaming, praise, chaos, and "I love you's." Somedays, OK many days, I wonder how the Good Lord picked me to be their mother. I fall very short, but I am blessed that they and Him love me anyways.
So I guess back to the question, where to start? The best way is to just jump in. Better yet, to use an analogy. The only way to eat an elephant is one bite at a time. I love using analogies with my 4 year old. He takes everything so literally. I said this to him once and he asked, "Who eats elephant?" He is still trying to figure what side of the bed is the "right" side. Since occasionally, he wakes up on the "wrong" side. Haha!
So this is the first step, my first post. Not profound, but a step. Have a wonderful day!
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