Friday, October 19, 2012
Inner Peace
And on the fourth day...
Lyla peed in the potty!!!! forthefirsttime... I have never seen a two year old more proud! She clapped, she squealed, she hugged my next HARD in delight. Fingers crossed that something clicked!
A whole new perspective
I am so behind on my blog. I haven't even blogged about our first family trip to the beach last summer. I haven't blogged about how C's school has been going, his soccer, Lyla's growing personality, and I certainly haven't blogged about my biggest struggle in life, my mom's cancer. I wasn't going to. It felt too personal. Too private. Unnecessary. My mom might even get mad at me. But then I remembered WHY I write my blog. I write my blog for my children. So that someday, they can read about their childhood. I also write my blog honestly so that if for some reason I am not around, my children can know what my challenges, fears, frustrations, joys, proud moments and moments of doubt were. And so, I have decided to write about my mom's cancer for my daughter. Because this time it's scary. It's more real. And this time around I am a mother, dealing with MY mother's cancer, one that could invade my body, but worse, the body of my daughter. So, I am going to share my journey. For Lyla. And hope my mom understands why.
The night before school started, I was frantically trying to put the finishing touches on my new Freshman Seminar course when I got a text message. It said "had a bad day. Found out I have cancer in the other boob now. Boo." I stood there shocked, unable to breathe, immediately wanting to puke. First confused my mom sent me a TEXT, then with the very very selfish thought of "I don't want to go through this again." I walked out of my office and told my husband, composed myself and called my mother and quickly learned why I got a text. She was broken. She was a 10 year breast cancer survivor and had finally begun to believe she had won. Her voice was broken, scared, mad, you name it. Her doctor had not confirmed the results, but has a TON of experience and told her that he was 95% sure that is was cancer. We took deep breaths and said we'd go one step at a time. Both agreeing that in this case, it didn't seem easier the second time around. Somehow, knowing what to expect made it SO much worse. And I didn’t want anyone else to know.
A few days later (I think, at this point, things are incredibly blurry) the cancer was confirmed. Her doctor was recommending a double mastectomy due to her family history, her mother had it, her mother's sister and that sister's daughter, and due to the fact that it was my mom's second time. This solution seems like a no brainer. Even to my mom. But when it really comes down on you or your mother, it’s, well, it's just disgusting. To cut off a woman's BOOBS? I think that someday we will look back and be in shock that people did that to women. But for now, it was the best bet to ensure that we do not have to go through this again.
A few days after this I got a text from my brother that read, “Oh man, looks like mom is going to have to have chemo." I was sitting in my car fixing to leave my husband’s office with my kids in the back and I remember just staring and once again not being able to breathe and wanting to puke. "What?" I thought, "ten years ago, it was lumpectomy + radiation, and POOF! no cancer. CHEMO?!?! That just sounds like REAL cancer. My mom can't do CHEMO! I (selfishly) don't want to watch my mom's HAIR fall out! I have a FAMILY to raise, how will I EVER have time for CHEMO?!?! I can't hide this from Carson if she has no HAIR!" Once again, all selfish thoughts.
I felt TERRIBLE for all these self-centered thoughts. I still do. I mean, I'm not the one having to go in for CHEMO or to get my BOOBS cut off. Why in the WORLD would I think about my needs. I've had moments where I've felt like the most awful person in the world. People have been nice and reassured me that it's ok to think like this. I still don't know...
Anyway, Josh came and got the kids from the car and I went on home to call my mom, who of COURSE was just broken. I mean, look how I was feeling, I can't imagine how she felt. She explained that due to its size and the fact that it was a grade 3 cancer, something not even mentioned ten years ago, that she was looking at a 95% chance of having to have chemo. However, they thought her best bet to AVOID chemo was to do the mastectomy. So, two reasons for such a drastic measure. So, once again, we composed ourselves, and carried on.
When you deal with cancer, you get REALLY patient. Nothing comes quickly (except the cancer), tests take forever, and appointments take days or weeks. So for the few weeks, we were kind of in limbo. We had to wait to meet with the surgeon, to schedule the surgery, to find a plastic surgeon for the reconstruction (that could no longer happen during the removal due to the chemo threat), etc. etc. Once again, we carried on not knowing when things were going to take place.
Finally, we got a date. The 12th of September. Still doubting her decision, my mom confirmed her appointment and we began the process. I told her that I would stay in the hospital with her, her sister would go with her for all her pre-op stuff the day before, then she and I would 'wing it' from there. That was about all we could do at that point. That and make sure my classes were covered. This took all of 5 minutes thanks to my AMAZING co-workers. Thanks to my wonderful husband and sweet friends, what to do with the kids was never a concern. "Whatever you need," J would always say.
So the day before came. My mom was dreading that day more than the procedure I think because she had to do something with this dye. I don't really know what it is, allows them to locate the lymph nodes or something, anyway, last time she did this, she said it was the worst pain she had ever felt. The doctor at the time told her that for some women it is AWFUL and for others not so bad. KNOWING it's awful for her, was well, awful for US. I had not planned on going up there, but the morning came and I found myself more anxious, worried, nervous and EMOTIONAL than I had ever felt in my WHOLE life. I had not been able to breathe since I found out, but that day I was in lectures having to take a break and catch my breath because I felt like I was going to have a panic attack. Needless to say, I taught my classes and left. I called my mom from my car and her words were "Oh I wish I had asked you to come." "I'm on my way" I told her. I got the car seat to J and took off. About 15 minutes later, I got the ONLY good phone call I had gotten since all this began, "I'm done!" she exclaimed. "It was NOTHING like last time, not even the same needle! The young girl didn't even know what I was talking about!" WHEW! What a load. I could breathe a little. Could handle a good puke, but I could breathe. I still hurried because she had a meeting with her surgeon’s nurse that I wanted to hear. I knew my mom wouldn't remember anything because she was so overwhelmed and now that I was going up there and DOING something, I felt a TON better.
I met up with my mom and my aunt at Mercy. We got a quick bite then walked over to the tower. We went into the nurses office and sat down, where we were explained how the incisions would be made and how to care for the wounds, and the drains. Vomit. This is when I REALLY got to worrying about my shoes. I had on the cutest little leopard flats, that would NOT clean up well if I puked on them. Seeing my mom so nervous, so grossed out about this process, made me feel, numb. Sick to my stomach and numb. Either way, we made it through that meeting. THEN, we had to go to the prosthetic BOOB store...Puke.
The store was located just a couple miles south in Northpark Mall. We all drove our own cars there to get her fitted for her post-surgical camisole. My mom was really dreading this too, in her mind she had imagined fake boobs everywhere I think. But when we walked in, it was just like a nice lingerie and swimsuit section. Then we walked further back...there were the wigs and the scarf things you can wear on your head. Head down, "those shoes are too cute for puke". My poor sweet mom bravely walked back to the fitting room, glancing at the wigs on the way by. She got fitted in a surprisingly flattering cami, came out, even looked at wigs for a moment before I decided that we don't need to look at those unless we KNOW we have to. She agreed. We left, did a little shopping, and then went out for a MUCH needed glass of wine and a steak dinner.
The drive home was a blur. I hadn't told any of my friends, other than a few girls in town who needed to know because I may be out of pocket. I can't even remember this drive. I know I tried to call my closest two friends, they didn't answer, I got gas, and got home. Numb. Still watching my shoes. J made me another drink (maybe I have a problem...) and I decided that I no longer needed to be afraid of being treated like my mom had cancer, she did, and we needed prayers to get through this. So, I made if Facebook official. And HOLY COW! Support just RUSHED out of my phone, on Facebook, texts, calls; it was humbling to say the least. I spent the rest of the evening on the phone talking or typing getting loads of encouragement, prayers, support. My dear sweet friend Renea and her mother (who is a couple weeks ahead of my mom on all this) were just two of the people who gave me the strength I needed to get through the next day.
That night I went to tuck my little Lyla in and I just stared at her thinking, "I really hope you never have to go through this baby girl. Not any part of it. Not you watching me or me watching you." In that moment I realized that there were four generations of women dealing with this disease. My grandma watching her baby, my mother getting watched by HER baby, and my sweet baby, not really knowing anything, but with this family history to live with. I slept for two whole hours that night...
Surgery day:
I woke up at 5:30am today, well, I woke up at 2:30 after going to bed at 12. I’m typing to calm my nerves. To get some perspective. Or something. I don’t know what I’m doing. This is just how I’ve always coped. I just feel so dang sorry for my mom having to go through what she is going to today. I just can’t really get my head around walking her into the hospital to do this. I’m scared of what it will be like seeing her after. Will she be upset? Will I get upset seeing her? I just don’t know. I hope not. I need to stay strong. I just know that doing nothing is SO hard. I suck at waiting and doing nothing. I have a plan as a gift for my mom that will double as something to do in surgery, it involves writing. Surprise. I think people will call you crazy less often if you don’t talk to yourself, typing or writing to yourself looks much more normal. I don’t have to be there for several hours. But I think I’m just gonna leave. At least get ready, then leave. Go to Starbucks. Get the drive over with. I still just wanna puke.
Post surgery:
Man, I am tired, but I’m taking a minute to type some thoughts before crashing!!! The surgery went as good as it could have gone. It was faster than expected, everything looked good to the doctor, my mom’s mood was upbeat, she went home today (the day after). I left her with my aunt and her mother so I could get some sleep. Hospital sleep is pretty useless. I saw the incisions today. Man I was dreading that with everything I had. But it really wasn’t terrible. Actually looked good, you know for chopped off boobs. I’m most amazed that even without any padded bras it on doesn’t look that strange. She looks skinnier. Big boobs are totally over rated. I’m ready to sleep now.
Going to the oncologist:
I am SO ready for this day. I really feel in my heart that today is going to be good. We got the preliminary report and it looked good, nothing in her lymph nodes. That’s fantastic! However, I was disappointed because I thought THAT was the clearing to not have to have chemo, but it wasn’t apparently. My mom explained that it’s a grade 3 cancer so the oncologist has to look into it to determine if she has to have chemo. What surprised me was my mom said “I don’t know how many grades there are, but I guess 3 isn’t good.” “Mom, there are ONLY 3 grades.” “Oh, crap, I was hoping there were like, 10…” Anyway, nope 3. Which from what I’ve researched, means it’s messy in its reproduction so it could have spread and we don’t know it. Therefore, the oncologist has to look at it and is going to let us know today. But I just feel hopeful. Everything else has gone SO well, she cut off her BOOBS, the source of the cancer, surely we can just move on now.
After the oncologist:
I have no idea how to describe how I feel right now. Oncology report showed my mom’s ‘reoccurrence’ rate was pretty high, not TERRIBLY high, but about 20%. Meaning she had a 1 in 5 chance that the cancer, yes the one that was REMOVED, will come back. SO, 1 in 5 chance of getting THAT cancer in addition to all of our normal chances of getting caner ANYWAY. Due to that, AND the fact that was a Grade 3, AND due to her family history, she recommended chemo. However, only 4 treatments that could be done over 2 months, which was preferred over the 6-9 months originally quoted to us. So a little good new and a whole lot of bad news. I had like a million questions, one of them being what to expect. She walked me though it, day 2,3 fatigue, nausea, joint paint, nerve issues, etc, day 21 hair loss…
Hair loss. My mom bald. Cleaning her hair out of her drain. Can’t hide it from Carson if she is BALD. How will she deal with that? How else will it change her appearance? Why does appearance matter SO much. I just don’t WANT to see my mom look like that. I don’t have TIME to care for someone with chemo. I am the most unsympathetic person I know. Oh my gosh, I am selfish and a terrible person. Is this what I have to look forward to?
Doctor: “I am really concerned for you.”
“ME? Let’s focus on the one with cancer here.”
Huh, I guess this really could be what I have to look forward to. Well, at least I’ll be prepared…
Doctor: “You can make your decision about what type of chemo you want now or we can do another test to get a more accurate result”
Me and my mom: “Let’s do this test to find out exactly. I think that will confirm that chemo is the right thing to do.”
Doctor: “Sounds good, in the meantime, you all can make your decisions, just keep in mind, these results never come back LOWER with a Grade 3 cancer, just higher, giving more support to the chemo treatment.”
That sums up an hour and a half long visit I think. We left. We went to eat. We roamed around Dillards aimlessly. We have to PICK our chemo? Talk about pick your poison. One option has heart issue risk, the other kidney, one joint pain the other nerve pain. All involve hair loss, nausea, mouth sores, etc. What the hell kind of medicine is this?!?! And how do we decide? And how do we decide to do it or not?!?!?! I hate cancer. Another thing I’ve learned about cancer is that it’s not ‘doctors orders’ it’s ‘doctors advice’ the treatments are too awful to order, Do you want poison in your body? We feel it’s the best plan, but it is your decision.” What the crap? I DON’T WANT TO DECIDE THIS!!! I want to be TOLD what to do by people who know MORE than I do.
Either way, we get to wait again. Three weeks. Three weeks to decide what to do.
I can’t tell her what I want her to do. This can’t be my decision or my influence. I don’t have to go through it. I can’t have her have any sort of resentment towards me should her chemo experience be awful or should the cancer come back. This has to be hers. I think I know what I would do. She told me what she would want me to do. She has to remember that she is a mother, a grandmother, and a daughter. She has to think what her mom would want, her children, and her grandchildren, and of course what she can handle. She has to think outside her vanity, her fear, and make this decision. This just can’t be mine to make. But I at least know my personal treatment plan. Since I’ve now had three doctors express their concern for me…
Maybe I’ll just cut mine off now. I would, to save Lyla and Carson from this alone. I’ve wanted a lift anyway since having kids; I can just hollow them out and move on. Or I could do genetic testing before hand. Of course, the last test done was on my grandma and she didn’t have it… so I’m not thinking there’s much to be said for that. It appears to be getting worse for the generations below. The daughters have no boobs left, their mothers surviving for 20 years… What will it be like if it gets me? Why am I thinking like this? Selfish, destructive thoughts. I CAN’T think like this. I can’t let this win over my mind. Breast cancer has been in the back of my mind for ten years now. It hasn’t won. I can’t let it win now. I just have to be healthy. Stay positive. Get checked. And IF my time does come, move forward with my plan. It’s a good one. I think. Unless something better comes along……
October 18th I'm not publishing this post right now. Not sure why not. I think I'm afraid of invading my mom's privacy. I don't know. Maybe I will. Right now I'm waiting to leave for the oncologist. I'm nervous. Don't know why. We aren't even starting chemo yet.
Since the surgery, things have been rough. While the actual surgery was WAY better than I expected. Walking my mom into the hospital was not terrible. Waiting in anticipation for 3 hours before hand WAS as bad as I imagined and not puking on my shoes as they drove her off was WAY more difficult than I thought. (I had to leave the building for air.) The wait went by fast, and seeing her post surgery was surprisingly easy. Seeing the incisions wasn't even as bad as I thought. I was glad that I had looked at lots and lots of pictures on Google to prepare myself though. We got her home, she had a hard moment when she first got home, but her sister was there for her, but she stayed strong. We took care of the incisions, taught her how to wrap herself up, thought we were moving along...But things just aren't healing like they should. She got a skin infection which isn't helping things, she has lots of swelling and continued discomfort even since the drains were removed. It's frustrating. We had hoped she would be feeling good and more comfortable in her new skin before all this chemo crap got going, but I guess that's not going to happen. Her surgeon gave her the tests results we ordered, it was KIND of good news, it wasn’t HIGHER, but it was the same. So, chemo is the best option.
I think we will be setting up the treatments today. At least the port procedure if she decides to get one. She was told she MIGHT have an option, but I think getting it will be easier on her in the long run. She only has one good vein...
Maybe I'm a little mad. Mad that nothing came about that made us say, OH GOOD, no chemo. After all, the doctor prepared us when she mentioned these tests don’t come back lower. We will have to do chemo. I’m ready, but I’m feeling helpless. There's nothing I can do to make this better or easier. I'm feeling wimpy because I think I should just be stronger and not worry so much. I'm not comfortable with the unknown. This could be a breeze or it could be as bad as I read. I'm feeling sad because if I'm feeling all of this, I can't imagine what my mom is feeling.
I wish I could take all of this from her. But I can't. I can just be here. I need to just stay strong.
The crazy demented part of me says, at least write down your thoughts. So that if you are ever are in your mom's shoes, and Lyla is in yours, at least she can know the crazy feelings she may have are ok. Justified. And understandable.
October 19th
I can’t even believe what I’m fixing to type. Here’s the deal. Yesterday, I went to get my mom. We both had a long list of questions. We were ready to do this. Well, as ready as you get in a state of complete dread and fear. We went to the office, making sure we took note of where to turn for next time. Got blood work done then went back for our appointment. We had to wait almost an hour for the doctor to come in, totally different from last time. My mom commented that perhaps her blood work was real bad. We tried to laugh, we laughed at my sweet aunt Gi’s text, “praying for good news today”. “What GOOD news? Well maybe we will get to pick our chemo dates, which would be nice good news!” That was the best news we could think of that we would POSSIBLY be getting.
Finally the doctor came in, (deep breath, here we go), and we got right to it, how are you feeling, how are the incisions, etc. After we asked our first question, the doctor said “Well, I think you may not be so concerned about chemo after I tell you what I am going to tell you today.”
Blank faces, jaws dropped, stunned silence.
“I got your test scores back.” (wait that’s not the same thing that we saw) “You reoccurrence risk actually came back lower, almost half.”
Blank faces, jaws dropped, stunned silence.
“So let me break this down for you again. You are now at 12%. So with chemo and your pills you can get to 4% or without chemo, you can get to 6%, which is where we thought you could be with chemo according to our old numbers. This new score puts you just BARELY above the low risk range, where studies show chemo does not good, you are BARELY in the intermediate risk, where chemo is POSSIBLY recommended. And because you are so low now, I don’t think that chemo is worth the risk to get you only 2% points lower. We are now going to be at a 94% chance of it NOT coming back without it.”
Blank faces, jaws dropped, stunned silence.
“This is good news girls.”
“I bet you don’t get to give a lot of that” I said shocked.
"I don't" she replied.
“But you said Grade 3’s don’t come back lower?” I questioned.
“I was wrong” the doctor smiled.
I can’t explain our reaction. We were absolutely shocked. We had SO gotten our minds around this. I had visualized the hair loss experience SO many times, I had cleared my schedule for half of the week to be in Norman, I had dropped my classes to have less stress, we were ready to take this on, and suddenly there WAS good news. In fact, it was the best news I had ever heard in my life and it felt too good to be true. I always wondered why happy people cried on TV, but I got it yesterday. We just wanted to cry of relief. I also felt like there was going to be a “but”. I felt a strong urge to get out of dodge before something else was said, but nothing happened. She said, “I’ll still give you chemo if you want to go for the other 2%, but I recommend you starting the pill, I’ll call it in. If you decide no chemo, start the pill, if you decide to do chemo, come back next week.” (once again, no doctor’s ORDERS)
So here we are. Able to get to the 6% we had hoped to get to without chemo. Is there a tiny voice saying “get 4%”? Sure. But there’s another voice saying “96% chance that it WON’T come back!” Thanks to our awesome God, he gave us these odds. He showed us doctors can be wrong.
And I think we will take that and her hair.
I went to bed last night thinking, wow this has been a long semester, only to realize it had only been TWO months. Two of the longest, most blurry, stressful months ever. I went to bed SO thankful for my life, my sweet little family, and with a BIG lesson learned. We can’t take a single day for granted, each one is a true gift from God, we need to live every single day with a thankful heart while taking advantage of every opportunity we have, whether it is an opportunity to travel or a quick hug, because life as we know it can change with one little text. And next time, we may not get a second chance.
The night before school started, I was frantically trying to put the finishing touches on my new Freshman Seminar course when I got a text message. It said "had a bad day. Found out I have cancer in the other boob now. Boo." I stood there shocked, unable to breathe, immediately wanting to puke. First confused my mom sent me a TEXT, then with the very very selfish thought of "I don't want to go through this again." I walked out of my office and told my husband, composed myself and called my mother and quickly learned why I got a text. She was broken. She was a 10 year breast cancer survivor and had finally begun to believe she had won. Her voice was broken, scared, mad, you name it. Her doctor had not confirmed the results, but has a TON of experience and told her that he was 95% sure that is was cancer. We took deep breaths and said we'd go one step at a time. Both agreeing that in this case, it didn't seem easier the second time around. Somehow, knowing what to expect made it SO much worse. And I didn’t want anyone else to know.
A few days later (I think, at this point, things are incredibly blurry) the cancer was confirmed. Her doctor was recommending a double mastectomy due to her family history, her mother had it, her mother's sister and that sister's daughter, and due to the fact that it was my mom's second time. This solution seems like a no brainer. Even to my mom. But when it really comes down on you or your mother, it’s, well, it's just disgusting. To cut off a woman's BOOBS? I think that someday we will look back and be in shock that people did that to women. But for now, it was the best bet to ensure that we do not have to go through this again.
A few days after this I got a text from my brother that read, “Oh man, looks like mom is going to have to have chemo." I was sitting in my car fixing to leave my husband’s office with my kids in the back and I remember just staring and once again not being able to breathe and wanting to puke. "What?" I thought, "ten years ago, it was lumpectomy + radiation, and POOF! no cancer. CHEMO?!?! That just sounds like REAL cancer. My mom can't do CHEMO! I (selfishly) don't want to watch my mom's HAIR fall out! I have a FAMILY to raise, how will I EVER have time for CHEMO?!?! I can't hide this from Carson if she has no HAIR!" Once again, all selfish thoughts.
I felt TERRIBLE for all these self-centered thoughts. I still do. I mean, I'm not the one having to go in for CHEMO or to get my BOOBS cut off. Why in the WORLD would I think about my needs. I've had moments where I've felt like the most awful person in the world. People have been nice and reassured me that it's ok to think like this. I still don't know...
Anyway, Josh came and got the kids from the car and I went on home to call my mom, who of COURSE was just broken. I mean, look how I was feeling, I can't imagine how she felt. She explained that due to its size and the fact that it was a grade 3 cancer, something not even mentioned ten years ago, that she was looking at a 95% chance of having to have chemo. However, they thought her best bet to AVOID chemo was to do the mastectomy. So, two reasons for such a drastic measure. So, once again, we composed ourselves, and carried on.
When you deal with cancer, you get REALLY patient. Nothing comes quickly (except the cancer), tests take forever, and appointments take days or weeks. So for the few weeks, we were kind of in limbo. We had to wait to meet with the surgeon, to schedule the surgery, to find a plastic surgeon for the reconstruction (that could no longer happen during the removal due to the chemo threat), etc. etc. Once again, we carried on not knowing when things were going to take place.
Finally, we got a date. The 12th of September. Still doubting her decision, my mom confirmed her appointment and we began the process. I told her that I would stay in the hospital with her, her sister would go with her for all her pre-op stuff the day before, then she and I would 'wing it' from there. That was about all we could do at that point. That and make sure my classes were covered. This took all of 5 minutes thanks to my AMAZING co-workers. Thanks to my wonderful husband and sweet friends, what to do with the kids was never a concern. "Whatever you need," J would always say.
So the day before came. My mom was dreading that day more than the procedure I think because she had to do something with this dye. I don't really know what it is, allows them to locate the lymph nodes or something, anyway, last time she did this, she said it was the worst pain she had ever felt. The doctor at the time told her that for some women it is AWFUL and for others not so bad. KNOWING it's awful for her, was well, awful for US. I had not planned on going up there, but the morning came and I found myself more anxious, worried, nervous and EMOTIONAL than I had ever felt in my WHOLE life. I had not been able to breathe since I found out, but that day I was in lectures having to take a break and catch my breath because I felt like I was going to have a panic attack. Needless to say, I taught my classes and left. I called my mom from my car and her words were "Oh I wish I had asked you to come." "I'm on my way" I told her. I got the car seat to J and took off. About 15 minutes later, I got the ONLY good phone call I had gotten since all this began, "I'm done!" she exclaimed. "It was NOTHING like last time, not even the same needle! The young girl didn't even know what I was talking about!" WHEW! What a load. I could breathe a little. Could handle a good puke, but I could breathe. I still hurried because she had a meeting with her surgeon’s nurse that I wanted to hear. I knew my mom wouldn't remember anything because she was so overwhelmed and now that I was going up there and DOING something, I felt a TON better.
I met up with my mom and my aunt at Mercy. We got a quick bite then walked over to the tower. We went into the nurses office and sat down, where we were explained how the incisions would be made and how to care for the wounds, and the drains. Vomit. This is when I REALLY got to worrying about my shoes. I had on the cutest little leopard flats, that would NOT clean up well if I puked on them. Seeing my mom so nervous, so grossed out about this process, made me feel, numb. Sick to my stomach and numb. Either way, we made it through that meeting. THEN, we had to go to the prosthetic BOOB store...Puke.
The store was located just a couple miles south in Northpark Mall. We all drove our own cars there to get her fitted for her post-surgical camisole. My mom was really dreading this too, in her mind she had imagined fake boobs everywhere I think. But when we walked in, it was just like a nice lingerie and swimsuit section. Then we walked further back...there were the wigs and the scarf things you can wear on your head. Head down, "those shoes are too cute for puke". My poor sweet mom bravely walked back to the fitting room, glancing at the wigs on the way by. She got fitted in a surprisingly flattering cami, came out, even looked at wigs for a moment before I decided that we don't need to look at those unless we KNOW we have to. She agreed. We left, did a little shopping, and then went out for a MUCH needed glass of wine and a steak dinner.
The drive home was a blur. I hadn't told any of my friends, other than a few girls in town who needed to know because I may be out of pocket. I can't even remember this drive. I know I tried to call my closest two friends, they didn't answer, I got gas, and got home. Numb. Still watching my shoes. J made me another drink (maybe I have a problem...) and I decided that I no longer needed to be afraid of being treated like my mom had cancer, she did, and we needed prayers to get through this. So, I made if Facebook official. And HOLY COW! Support just RUSHED out of my phone, on Facebook, texts, calls; it was humbling to say the least. I spent the rest of the evening on the phone talking or typing getting loads of encouragement, prayers, support. My dear sweet friend Renea and her mother (who is a couple weeks ahead of my mom on all this) were just two of the people who gave me the strength I needed to get through the next day.
That night I went to tuck my little Lyla in and I just stared at her thinking, "I really hope you never have to go through this baby girl. Not any part of it. Not you watching me or me watching you." In that moment I realized that there were four generations of women dealing with this disease. My grandma watching her baby, my mother getting watched by HER baby, and my sweet baby, not really knowing anything, but with this family history to live with. I slept for two whole hours that night...
Surgery day:
I woke up at 5:30am today, well, I woke up at 2:30 after going to bed at 12. I’m typing to calm my nerves. To get some perspective. Or something. I don’t know what I’m doing. This is just how I’ve always coped. I just feel so dang sorry for my mom having to go through what she is going to today. I just can’t really get my head around walking her into the hospital to do this. I’m scared of what it will be like seeing her after. Will she be upset? Will I get upset seeing her? I just don’t know. I hope not. I need to stay strong. I just know that doing nothing is SO hard. I suck at waiting and doing nothing. I have a plan as a gift for my mom that will double as something to do in surgery, it involves writing. Surprise. I think people will call you crazy less often if you don’t talk to yourself, typing or writing to yourself looks much more normal. I don’t have to be there for several hours. But I think I’m just gonna leave. At least get ready, then leave. Go to Starbucks. Get the drive over with. I still just wanna puke.
Post surgery:
Man, I am tired, but I’m taking a minute to type some thoughts before crashing!!! The surgery went as good as it could have gone. It was faster than expected, everything looked good to the doctor, my mom’s mood was upbeat, she went home today (the day after). I left her with my aunt and her mother so I could get some sleep. Hospital sleep is pretty useless. I saw the incisions today. Man I was dreading that with everything I had. But it really wasn’t terrible. Actually looked good, you know for chopped off boobs. I’m most amazed that even without any padded bras it on doesn’t look that strange. She looks skinnier. Big boobs are totally over rated. I’m ready to sleep now.
Going to the oncologist:
I am SO ready for this day. I really feel in my heart that today is going to be good. We got the preliminary report and it looked good, nothing in her lymph nodes. That’s fantastic! However, I was disappointed because I thought THAT was the clearing to not have to have chemo, but it wasn’t apparently. My mom explained that it’s a grade 3 cancer so the oncologist has to look into it to determine if she has to have chemo. What surprised me was my mom said “I don’t know how many grades there are, but I guess 3 isn’t good.” “Mom, there are ONLY 3 grades.” “Oh, crap, I was hoping there were like, 10…” Anyway, nope 3. Which from what I’ve researched, means it’s messy in its reproduction so it could have spread and we don’t know it. Therefore, the oncologist has to look at it and is going to let us know today. But I just feel hopeful. Everything else has gone SO well, she cut off her BOOBS, the source of the cancer, surely we can just move on now.
After the oncologist:
I have no idea how to describe how I feel right now. Oncology report showed my mom’s ‘reoccurrence’ rate was pretty high, not TERRIBLY high, but about 20%. Meaning she had a 1 in 5 chance that the cancer, yes the one that was REMOVED, will come back. SO, 1 in 5 chance of getting THAT cancer in addition to all of our normal chances of getting caner ANYWAY. Due to that, AND the fact that was a Grade 3, AND due to her family history, she recommended chemo. However, only 4 treatments that could be done over 2 months, which was preferred over the 6-9 months originally quoted to us. So a little good new and a whole lot of bad news. I had like a million questions, one of them being what to expect. She walked me though it, day 2,3 fatigue, nausea, joint paint, nerve issues, etc, day 21 hair loss…
Hair loss. My mom bald. Cleaning her hair out of her drain. Can’t hide it from Carson if she is BALD. How will she deal with that? How else will it change her appearance? Why does appearance matter SO much. I just don’t WANT to see my mom look like that. I don’t have TIME to care for someone with chemo. I am the most unsympathetic person I know. Oh my gosh, I am selfish and a terrible person. Is this what I have to look forward to?
Doctor: “I am really concerned for you.”
“ME? Let’s focus on the one with cancer here.”
Huh, I guess this really could be what I have to look forward to. Well, at least I’ll be prepared…
Doctor: “You can make your decision about what type of chemo you want now or we can do another test to get a more accurate result”
Me and my mom: “Let’s do this test to find out exactly. I think that will confirm that chemo is the right thing to do.”
Doctor: “Sounds good, in the meantime, you all can make your decisions, just keep in mind, these results never come back LOWER with a Grade 3 cancer, just higher, giving more support to the chemo treatment.”
That sums up an hour and a half long visit I think. We left. We went to eat. We roamed around Dillards aimlessly. We have to PICK our chemo? Talk about pick your poison. One option has heart issue risk, the other kidney, one joint pain the other nerve pain. All involve hair loss, nausea, mouth sores, etc. What the hell kind of medicine is this?!?! And how do we decide? And how do we decide to do it or not?!?!?! I hate cancer. Another thing I’ve learned about cancer is that it’s not ‘doctors orders’ it’s ‘doctors advice’ the treatments are too awful to order, Do you want poison in your body? We feel it’s the best plan, but it is your decision.” What the crap? I DON’T WANT TO DECIDE THIS!!! I want to be TOLD what to do by people who know MORE than I do.
Either way, we get to wait again. Three weeks. Three weeks to decide what to do.
I can’t tell her what I want her to do. This can’t be my decision or my influence. I don’t have to go through it. I can’t have her have any sort of resentment towards me should her chemo experience be awful or should the cancer come back. This has to be hers. I think I know what I would do. She told me what she would want me to do. She has to remember that she is a mother, a grandmother, and a daughter. She has to think what her mom would want, her children, and her grandchildren, and of course what she can handle. She has to think outside her vanity, her fear, and make this decision. This just can’t be mine to make. But I at least know my personal treatment plan. Since I’ve now had three doctors express their concern for me…
Maybe I’ll just cut mine off now. I would, to save Lyla and Carson from this alone. I’ve wanted a lift anyway since having kids; I can just hollow them out and move on. Or I could do genetic testing before hand. Of course, the last test done was on my grandma and she didn’t have it… so I’m not thinking there’s much to be said for that. It appears to be getting worse for the generations below. The daughters have no boobs left, their mothers surviving for 20 years… What will it be like if it gets me? Why am I thinking like this? Selfish, destructive thoughts. I CAN’T think like this. I can’t let this win over my mind. Breast cancer has been in the back of my mind for ten years now. It hasn’t won. I can’t let it win now. I just have to be healthy. Stay positive. Get checked. And IF my time does come, move forward with my plan. It’s a good one. I think. Unless something better comes along……
October 18th I'm not publishing this post right now. Not sure why not. I think I'm afraid of invading my mom's privacy. I don't know. Maybe I will. Right now I'm waiting to leave for the oncologist. I'm nervous. Don't know why. We aren't even starting chemo yet.
Since the surgery, things have been rough. While the actual surgery was WAY better than I expected. Walking my mom into the hospital was not terrible. Waiting in anticipation for 3 hours before hand WAS as bad as I imagined and not puking on my shoes as they drove her off was WAY more difficult than I thought. (I had to leave the building for air.) The wait went by fast, and seeing her post surgery was surprisingly easy. Seeing the incisions wasn't even as bad as I thought. I was glad that I had looked at lots and lots of pictures on Google to prepare myself though. We got her home, she had a hard moment when she first got home, but her sister was there for her, but she stayed strong. We took care of the incisions, taught her how to wrap herself up, thought we were moving along...But things just aren't healing like they should. She got a skin infection which isn't helping things, she has lots of swelling and continued discomfort even since the drains were removed. It's frustrating. We had hoped she would be feeling good and more comfortable in her new skin before all this chemo crap got going, but I guess that's not going to happen. Her surgeon gave her the tests results we ordered, it was KIND of good news, it wasn’t HIGHER, but it was the same. So, chemo is the best option.
I think we will be setting up the treatments today. At least the port procedure if she decides to get one. She was told she MIGHT have an option, but I think getting it will be easier on her in the long run. She only has one good vein...
Maybe I'm a little mad. Mad that nothing came about that made us say, OH GOOD, no chemo. After all, the doctor prepared us when she mentioned these tests don’t come back lower. We will have to do chemo. I’m ready, but I’m feeling helpless. There's nothing I can do to make this better or easier. I'm feeling wimpy because I think I should just be stronger and not worry so much. I'm not comfortable with the unknown. This could be a breeze or it could be as bad as I read. I'm feeling sad because if I'm feeling all of this, I can't imagine what my mom is feeling.
I wish I could take all of this from her. But I can't. I can just be here. I need to just stay strong.
The crazy demented part of me says, at least write down your thoughts. So that if you are ever are in your mom's shoes, and Lyla is in yours, at least she can know the crazy feelings she may have are ok. Justified. And understandable.
October 19th
I can’t even believe what I’m fixing to type. Here’s the deal. Yesterday, I went to get my mom. We both had a long list of questions. We were ready to do this. Well, as ready as you get in a state of complete dread and fear. We went to the office, making sure we took note of where to turn for next time. Got blood work done then went back for our appointment. We had to wait almost an hour for the doctor to come in, totally different from last time. My mom commented that perhaps her blood work was real bad. We tried to laugh, we laughed at my sweet aunt Gi’s text, “praying for good news today”. “What GOOD news? Well maybe we will get to pick our chemo dates, which would be nice good news!” That was the best news we could think of that we would POSSIBLY be getting.
Finally the doctor came in, (deep breath, here we go), and we got right to it, how are you feeling, how are the incisions, etc. After we asked our first question, the doctor said “Well, I think you may not be so concerned about chemo after I tell you what I am going to tell you today.”
Blank faces, jaws dropped, stunned silence.
“I got your test scores back.” (wait that’s not the same thing that we saw) “You reoccurrence risk actually came back lower, almost half.”
Blank faces, jaws dropped, stunned silence.
“So let me break this down for you again. You are now at 12%. So with chemo and your pills you can get to 4% or without chemo, you can get to 6%, which is where we thought you could be with chemo according to our old numbers. This new score puts you just BARELY above the low risk range, where studies show chemo does not good, you are BARELY in the intermediate risk, where chemo is POSSIBLY recommended. And because you are so low now, I don’t think that chemo is worth the risk to get you only 2% points lower. We are now going to be at a 94% chance of it NOT coming back without it.”
Blank faces, jaws dropped, stunned silence.
“This is good news girls.”
“I bet you don’t get to give a lot of that” I said shocked.
"I don't" she replied.
“But you said Grade 3’s don’t come back lower?” I questioned.
“I was wrong” the doctor smiled.
I can’t explain our reaction. We were absolutely shocked. We had SO gotten our minds around this. I had visualized the hair loss experience SO many times, I had cleared my schedule for half of the week to be in Norman, I had dropped my classes to have less stress, we were ready to take this on, and suddenly there WAS good news. In fact, it was the best news I had ever heard in my life and it felt too good to be true. I always wondered why happy people cried on TV, but I got it yesterday. We just wanted to cry of relief. I also felt like there was going to be a “but”. I felt a strong urge to get out of dodge before something else was said, but nothing happened. She said, “I’ll still give you chemo if you want to go for the other 2%, but I recommend you starting the pill, I’ll call it in. If you decide no chemo, start the pill, if you decide to do chemo, come back next week.” (once again, no doctor’s ORDERS)
So here we are. Able to get to the 6% we had hoped to get to without chemo. Is there a tiny voice saying “get 4%”? Sure. But there’s another voice saying “96% chance that it WON’T come back!” Thanks to our awesome God, he gave us these odds. He showed us doctors can be wrong.
And I think we will take that and her hair.
I went to bed last night thinking, wow this has been a long semester, only to realize it had only been TWO months. Two of the longest, most blurry, stressful months ever. I went to bed SO thankful for my life, my sweet little family, and with a BIG lesson learned. We can’t take a single day for granted, each one is a true gift from God, we need to live every single day with a thankful heart while taking advantage of every opportunity we have, whether it is an opportunity to travel or a quick hug, because life as we know it can change with one little text. And next time, we may not get a second chance.
Thursday, October 18, 2012
End of day 2
Long story short. Lyla has NOT peed in the potty. STILL. She had a pee and a poo in her pull up at my dad's office, then peed three times in her panties.... This is the opposite of her brother who would pee at every alarm AND in between in his underwear.
If I could JUST get her to GO in the potty...
Wednesday, October 17, 2012
Day two
Well, last night I went into Lyla's room to find that my super secret pull up plan had failed. She had taken it off and put her panties back on... Luckily she had NOT peed before I found her. I have NOT bought a water proof mattress pad yet and of course, she was asleep on my floor.
We did have to change my sheets at 1:40am because C slept with us an had an accident. Seriously?
This morning, L is back at it. She rarely leaves her potty chair. It's precious. She just sits there and tries. But the pee never comes out. We are having to leave for a few hours because I have class today so I had to trick her into a pull up. She is wearing her panties on the outside of her clothes. Great.
Welp, just had to change her pull-up. She peed in it. BUT, she DID come to get me right away! That's progress right? geez I hope...
I need to go back and read C's potty trainig blog for encouragement...
Tuesday, October 16, 2012
First (half) day check in.
Well, I have good news and bad news,the good news is that Lyla only had two accidents. The bad news is that those two times were the only two pees. Our potty is still BRAND SPANKIN NEW. It has yet to see a DROP of pee. We didn't even open the bag of M&Ms today...I did put a good dent in my Red Vines for patience.... The other bad news is that she is refusing diapers and pull-ups for bed. YIKES! I had to put her in panties then secretly insert the pull-up into her PJ's and quickly pull them up.
But I guess it is good that she WANTS out of her diapers, right?
Let it begin!
I came home from the grocery store today fully armed with princess panties, a bag of M&M's to reward Lyla with, a bag of Red Vines to reward myself with and an excited little girl ready to pee pee in her potty. She was ready to start right away, so we are about 21 hours ahead of schedule.
20 minutes in- peed in her Snow Whie panties. I then found her potty filled to the top with her blankie, a snake, a rat, a baby outfit, a ball, and a watch. Unloaded potty. Thankfully it has NEVER been peed in. She is currently sitting on her potty in the living room watching Elmo's It's Potty Time! C is cheering her along.
Monday, October 15, 2012
in a blink of an eye...
There was a moment today that I about lost it. J witnessed it. I left C's school with Lyla under my arm like a sack of potatoes, kicking and screaming and hitting me, and C following behind whining and crying. "I don't want to go home with them", I thought. J must have sensed it coming, because he was waiting in the parking lot b/c he happened to be driving by at pick up. Luckiy he took a kid so that I didn't give them away.
We went from that at 3pm to this at bedtime...
L: Mama, I need a big hug! (Lyla gives the BEST hugs ever by the way). Now I need a tiss. (Lyla also gives kisses for a really long time. Maybe too long if she was older). There, now I can go night night. Night night mama. I love you. Wait, just ONE more tiss. Now ONE more hug. Ok, night night. Love you.
Nothing is sweeter.
Climbing, climbing, climbing
Dear Carson,
You are a monkey. A 4.5 year old monkey who can NOT resist the temptation to climb on everything you see. I mean everything. I'm sure someday you will stop, and I'll miss it. So for today, I am not going to tell you to not climb on my furniture and (literally) up
my doors, because I don't think you can help it. Instead, I'm going to be thankful that you are a happy, healthy boy who CAN climb and remember that soon enough you will be able to keep your feet on the ground. I hope.
Love,
Mom
Potty Training Round 2
So despite the fact that Lyla has NEVER EVER peed in the potty, I have decided that she is going to be cut off of diapers. We will be potty training during Fall Break...stay tuned for potty training fun!
Sunday, October 14, 2012
Carson's first fight...
Yes, it has already happened. C got sent to the office because he got in a fight. At first this horrified me, but then I got the whole story from Carson:
"Well Mom, we were standing in line to go potty and I wanted to know where he lived. So I asked and he didn't hear me so then I tapped him with my foot on his leg and he turned around and hit me on the head. So I hit him back. Then my teacher took us to the office and gave us a talk. And he had to have an ice pack, but I didn't. (shrug) Guess I'm just tougher."
Yes, I nearly drove off the road at this point because I was laughing so hard. After talking it over with J, he agreed with me that we aren't going to punish C for finishing fights, just for starting them. So of course, we had to address the reason it started....he used his FOOT to get someone's attention. His response "ok I'll use my elbow next time, like cowboys do". Ok ok. Let's clarify here..."C use your finger to tap someone. Your FINGER. No one will ever think you are hitting/kicking with your FINGER!"
Oh geez.
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