Excuse me, ma'am. Might I borrow your uterus?

Today I am having surgery. I get to have these rock hard tissue expanders taken out and replaced with soft, more natural feeling breast implants. That part is pretty exciting. I might wake up feeling like a real woman, and not someone that currently has huge cantaloupes strapped to her chest. On a less exciting note, I am having a total hysterectomy. Say goodbye to my uterus, ovaries, fallopian tubes, and any chance at ever carrying another baby.  Even typing this I cannot see through the tears. My heart hurts and I am very angry. Angry that breast cancer has robbed me of the ability to chose when I am done having children. If it were up to me I would have a soccer team, or a small army. I have two beautiful girls and love every minute I have with them. I can't wait until they get older and we can go shopping, read books together, and dance around the house singing songs. If it were my choice, Emma and Bella would have a little brother, Rex. Or a little sister, Annabelle. Or maybe twins again. Yes, I may be crazy but I would do it again in a heartbeat.
Unlike other women in my position, I have 2 frozen embryos. I haven't figured out yet if this is a good thing or a bad thing. If they did not exist I think I would be able to move on with my life, but would also have no way of ever conceiving again.  Currently I am stuck in a rut.  I want nothing more than these 2 embryos to have names. Rex and Annabelle. Rex would be tall, dark, and handsome like his daddy and Annabelle would be a mix of Emma and Bella. Short, spunky, ornery. The only way for these embryos to ever have actual names is to find someone willing to be a surrogate for us.  I currently have a patient that is using a surrogate because she is unable to get pregnant for medical reasons. She is using a close friend and says that this will cost her around $30,000. To go through an agency and use an unknown surrogate costs around $80,000. Unless we win the lottery both of these options seem like impossibilities. What is the appropriate way to approach someone about using their uterus? "Hi, how are you? Can I borrow your uterus for the next 9 months or so?" "Wow, you look great! Would you mind if I wreck your body with my embryos?" "You look like you carry children well. Want to carry mine?" None of these sound quite right.
Who would be willing to carry my children? Who would I want to carry my children? This is a big deal. This is like the most important job interview of all time. Name, age, do you drink? smoke? Would you love my babies and take care of them the way I would?? This is a lot of trust to put in one person. I don't know if I am capable. There are only a few people in this world that I think I could trust with this, and I have no idea how to begin the conversation. Currently accepting advice, and someone willing to carry my babies!!

My week from hell...and the hospital stay to follow.

On Monday of this week I was still feeling really lousy from chemo and decided not to go to work. Well, I still had to go in to have lab done and get hydration but I didn't do any actual work.  My white blood cell count had dropped to a whopping 0.5 with this treatment. (Normal is about 5-10). So that explains why I feel like shit.  Throughout the week I continued to feel terrible. I had no energy, nausea, body aches, blah blah blah.  On Thursday I went to see the doctor and my white count was still low, I got some more hydration, and was sent on my merry way.  The new plan was that I wouldn't be getting my Taxol treatment starting on Monday as planned and it would be changing from every 2 weeks to weekly to help with side effects. I went home feeling lousy and like a huge pussy. Really? Is chemo really this hard? Why am I such a pain in the ass!
Thursday evening my nose began to run in mass amounts and my cough returned (that I seem to have had for about 6 weeks). My poor husband has stayed home all week to help take care of me and the girls (I wouldn't have been able to do it on my own) and I asked my mom to come help Friday afternoon and evening so that he could go to work.  I huffed and puffed the whole time she was there and after we attempted to eat dinner she ended up calling Gary home from work to take me to ER. I couldn't breathe.

So here I am at 530 in the morning wide awake sitting in my hospital room where I have since been admitted for pneumonia. I have not slept a wink, I am starving and there is no meal in my near future.  This pneumonia is apparently concerning enough that I have to have a bronchoscopy this morning.  I am slightly terrified, but more hungry than anything. I want something really greasy to eat, covered in some kind of sauce, and then some more sauce, with a side of Bloody Mary (or three).  I haven't threatened to kill anyone for food just yet but I was told not to eat my pillow.

I have had wonderful care here, from the ER people at St. Theresa to the EMS that transported me to St. Francis, to the wonderful nurses on 7N (some of which I used to work with when I worked here). I'm not a prayer person. I don't really understand it all but I'm currently accepting prayers. I'm currently feeling worse than I had ever thought I would feel through chemo. It's scary when you can't breathe and feel like you are dying and only 31.  I know this is just another kink in my road that will make me stronger but I'm getting really tired of kinks. I want a day of feeling good. And a greasy meal.  Please!?!

Without change there would be no butterflies.

So far this BAD pump is helping my nausea, although it comes at the cost of being sedated 24 hours a day. I have not spent a morning yet in the bathroom.  I have also eaten every meal and have a major craving for ice cream. So, I'm blowing through the Drumsticks that we have in the freezer and I'm not feeling guilty at all about it.
There are several things that have changed that I hadn't expected. Some are physical things and some are mental. For starters, water does not taste like water. It's more like drinking slime out of a glass. With this chemo I have had more problems finding something I can drink. I have tried Gatorade (too salty), apple juice (too sweet), lemonade (too tangy), and flavored water with lemon, lime and cucumbers (blah). I know I am dehydrated and I'm trying my hardest to get in enough fluids but I am failing. Big time failing.
Holding my girls does not feel like it did before.  I used to be able to feel their warmth against my chest and now my chest is numb. It feels like there is something foreign wedged in between my babies and I where my breasts were and my foobs (fake boobs) are now. The sad part is that this is probably never going to go away.
My hair hasn't all fallen out but it isn't growing either.  I shaved my head several weeks ago and it's still that short. I haven't shaved my armpits for weeks (which has been really nice). I guess I would consider this change to be more of a "perk".  It's nice not having to shave but it would be nice to have hair.  I keep seeing people with long pretty hair and it almost makes me cry sometimes. I have long pretty hair when I want to wear my wig but it's not the same.
All of the "moments" I have with my girls are more special.  I think anytime someone struggles with infertility issues has a new level of appreciation for the children that they are blessed with. I have felt blessed from the beginning to have these beautiful girls and I think I appreciate everything that we go through more than someone that hasn't had these struggles. When you throw cancer into this mix, every moment becomes special. Every smile, every laugh, every tear is special and has meaning.
I have always been a music lover. I like to sing and dance around the house when it's just me and my little girlies. I usually can sing most of the words but couldn't tell you what the song was actually about. I have noticed lately that when the radio plays I seem to find meaning in most songs. I actually hear what is being sung and understand the meaning whereas before I didn't really care.
I see the good in people now.  Before cancer I was very distrusting of people and it was hard to see the good in some people. Now I think I see the good a lot of times before I see the bad. I feel like I have been softened somehow.
Throughout my cancer journey I have tried to see the positive. There are a lot of obvious negatives but the positives are harder to see sometimes. I feel like I am becoming a much stronger person, I'm happier, I'm more positive, and I think I'm kicking the crap out of this little bitch named "cancer." I know that everything happens for a reason, and although I'm really pissed sometimes that this happened to me, in a way I am also thankful.  After all "without change there would be no butterflies."

Third times a charm.

Today is my third chemo. I have so far spent way too many days vomiting my toes up in the bathroom. I know the inside of our toilet well, and it needs to be cleaned. This time will be different, or so I tell myself. Since nothing I tried with the last treatment worked I am being forced to wear a 24 hour nausea pump called a BAD pump (benadryl, ativan, decadron). I'm not excited at all to wear this pump, but I am excited to see if it works.  I took this entire week off of work, since I knew how bad I felt last time. I don't like to call in sick to work and if given the option of calling in sick or coming in sick I always choose to come in to work. Therefore, I took the week off so that I wouldn't feel as bad not being there. They can plan ahead and just plan to miss me for a week.
The other thing that has changed with this treatment is that I will be trying some "alternative" nausea meds. (And by this I mean pot.) Mom, stop judging me.  If you were in my shoes you might decide to try it too. I am not a pot smoker. I have only ever tried this one time in my life and hated it. But I do vaguely remember eating almost an entire bag of chips after smoking. And since I haven't eaten much in the past month, I'm welcoming the munchies. I tried Marinol with my last treatment (which is Mary Jane in pill form) and I hated it. I would feel fine one minute and then all of a sudden, BOOM. Stoned. Really really stoned.  Not my thing. We shall see if the real deal is any better for me. It's funny what we are willing to try when we have no other choice.  The last pair of jeans I bought were a size smaller than usual. Those are now hanging on me, and my butt has disappeared completely.  I was comfortable losing weight in my legs, my arms, my post baby belly. But the butt was just taking it too far. It needs to come back. Now. So, Mary Jane, hopefully you will make me love food again and will bring my booty back.

Gnarly Neon 5K

Before I was diagnosed I had signed up for my first 5K. I never got to run it, or walk it for that matter.  Before I started chemo I decided to sign up for a 5K to run with a group of my coworkers. We signed up for the Gnarly Neon. What better way to spend a Saturday than getting splattered with neon paint while running. Well...lets be honest. We ran for about 5 minutes total and walked the rest. I ran what I felt like I could, which was disappointing at best. But at least my posse walked with me, instead of leaving me in their dust.  We walked, and talked, and watched all of the other crazies that were out with us.
My plan is to continue signing up and running what I can, until I can run the whole thing.  This was a goal I had before cancer and cant see any reason why cancer should change this.  I have a vision of me and my little princesses spending the weekends at races getting in shape. Bring it on 5Ks. Im ready.

Premonitions and Mary Kay

I saw Dr. today and will get my next chemo as scheduled on Monday.  Tonight I am planning to relax and pamper myself.  The past 2 weeks have been rough. Im not looking forward to the next chemo at all.

One of the girls I have known since middle school, Hannah, came over tonight for a Mary Kay party. She had asked if she could come pamper me and I agreed. Who doesn't need pampering? I invited one of my best friends Suzy over and we had a good time talking and getting our makeup done.

After Hannah left Suzy and I talked about her new job, her old job (with me), and our kids.  I don't talk to people about the fears going on inside of my head because to even think about them makes me cry. For whatever reason I felt like I needed to tell her what I was thinking and I'm glad I did. It felt good to get those thoughts out.

I have known since I was little that I would get breast cancer at a young age. Maybe it was just because my mom had breast cancer young and I thought I would follow in her footsteps or maybe it was something else.  I knew when I had my BRCA testing that I would have the gene mutation.  I knew when I had my breast MRI in February that something was on the left side. I have feelings sometimes that I cant explain. Premonitions.  

One of the feelings I have had for several years is that I am going to die at a young age from breast cancer.  I know that my cancer was caught early and that I will be fine.  I also know that I have a high  risk of it coming back, in which case I might not be fine.  What if this feeling is not just a feeling? What if it really happens? I have a huge fear that I will die from this and will not get to see my kids grow up.  

I remember when I graduated from high school my mom was very tearful. I thought she was just being emotional but she told me that when my sister and I were little and she was going through chemo she had asked God to let her live long enough to see us graduate.  That day came and went and she is still alive and healthy. I never understood why she was so emotional until now.

I don't believe in a God. Who do I ask to let me live? I want to see their first day of Kindergarten, their first school program, their first soccer game. I want to see high school graduation, college graduation, their wedding days, the births of their children, and then all of the above events for my grandchildren.  What if all I get is a few years?  I'm loving every smile, every laugh, every new development. I just cant imagine not being around for many many many years to come. I put on my big girl panties when Im in public. But inside my head are all of the "what ifs".  I don't know how to turn them off.

Im currently accepting feedback...

Marinol? Really?

Today I came in to the office for hydration. I have eaten basically nothing since Monday night, despite my arsenal of nausea meds. Dr. Truong came to see me in the treatment room and suggested that I start taking Marinol. I laughed at him and told him he was crazy and then he told me I have tried everything else.  So...after my hydration was done I went to the pharmacy and picked up my Marinol. For those of you that don't know, Marinol is marijuana in pill form.  I guess if it works it works!!

Look Good, Feel Better...or still nauseous.

I saw Dr. Truong on Friday and he sent me for a nasal swab on Saturday because of a nasty cough and runny nose that I have had for over a week. He wanted the results before my treatment today so I had to go to the hospital to do this.  The woman that did my swab asked how I was feeling and I told her that this cold is easy compared to the chemo that I was on. She told me that she was also a breast cancer survivor.  She told me many things that happened to her and things she had not planned on, like what happens when your nose hairs fall out. Well, your nose drips all day, thats what happens. Fun. It's amazing how people just pop in and out of your life, like little lessons, or little pieces of moral support. She gave me a lot of really useful information and then stuck a swab up my nose. I'm pretty sure that there might have been brain cells on that swab. Nice lady, but geez that did not feel good. Anyways, that swab came back positive for Rhinovirus, the common cold.  Since I feel ok, Dr. Truong let me have my treatment today.  (I would not have gone down without a fight! I have a life to get to!)  Since I was so nauseous last time, I came prepared.  I have Zofran, Ativan, Compazine, Scopolamine patches, and Sancuso patches. Chemo went fine, we shall see how the rest of the week goes.
Tonight I went to a "Look Good, Feel Better" class put on by the American Cancer Society. This class is supposed to teach women how to put on makeup when they have cancer. They show you things like how to make eyebrows when you have none.  There were four other women in my class (two of which were my patients, also).  It was nice to sit around and talk about what we are all going through, and have four people that understand. It was nice to get out of the house, but I'm already nauseous and ready for bed.  I think it's going to be a long week.

On a side note, today was my best friend April's 30th birthday. HAPPY BIRTHDAY!!!

Opinions...Wanted or Not.

It's funny how people give you their opinions, regardless whether or not you want to hear them.  Yesterday as I was sitting at my desk working, a patient that I have taken care of for years came up to talk to me.  I have breast cancer items all over my desk and most of my patients have figured out through word of mouth (or HIPAA violations) that I have cancer.  I have been very open about telling everyone, and the bald head is kind of a giveaway. The first words out of this woman's mouth were "Sara, what the hell did you do to your hair?"  I wanted to slap her, but instead I just gave her a straight face and told her that this was not a fashion statement. She then says "Well, what is it then." I proceeded to tell her that I have breast cancer and my hair was falling out from my chemo, so I shaved my head. She then paused, felt like an idiot, and told me I looked cute. It's hard to believe she really thought I looked cute when her first words started with "What the hell..."
Today I had several patients make up for the shortcomings of this patient yesterday. We have a husband and wife that have been my patients for years. How cancer happens to more than one person in one family at a time baffles me. Anyways, I went to talk to the husband who was getting chemo in the treatment room. He thought I looked like a runway model. Ha!! The two of them went on and on about how cute they thought my hair was. He had no clue that I shaved it because I too was on chemo. We had a long talk about my diagnosis and I went back to my desk. It's patients like them that make me stay in oncology. He is not doing well and they wanted to offer ME support. They both check on me every time they come in to see how I'm feeling.
There are certain patients that call me through out the day that make my day better. They could call and not really have anything to say and the simple fact that they called makes everything better. One of these patients is named John. I have taken care of him for about 3 years. He battled head and neck cancer, then Lymphoma, and now head and neck cancer again. He is currently on hospice care, living out the rest of his life at home alone. He has never been married or had any children. He has a father that is still alive and a sister, both of whom live hours away from him. He has been like a grandfather to me. Every time he would come in the office he would have to come and see me, just to chat. A few years ago we bought him a microwave for Christmas because he desperately needed one and surprised him with it. We have built quite a friendship over the years.  When he called me today it made my heart smile.  I had been wanting to call him but I wasn't sure if he was well enough to answer the phone.  He told me that he loved me, that he was thinking about me every day and praying for me. He told me that I was beautiful to him with or without hair, and that if I would have asked him he would have shaved it for me!  I filled him in on all of the latest office gossip (babies being born, people leaving) and told him how much I missed him.  This conversation meant more to me that most of the rest of my week combined.
In this cancer journey I am learning things as a nurse and as a cancer survivor that will make me a better person.  I am learning that the only people that have a clue what I am going through are the people that have been through it.  It helps me to be a better nurse, and better care for my patients.  I has also made me much closer to many of my patients than I ever would have been before.  I can sympathize with their symptoms, their concerns, and their fears. I feel like I assess my patients better and ask more questions than I would have before.
But...if you ask me what the hell I did to my hair and then call me later for a refill on your sleeping pills I may make you wait until the next day to tell you that you have refills at your pharmacy.  Sorry.

The Bald and the Beautiful

I'm not going to sugar coat this and tell you that chemo isnt that bad.  It sucks. Really bad. I have not had a good meal in over a week and feel like Im starting to look like a Holocaust survivor. My eyes have dark circles under them and my cheeks are sunken in.  I look at old pictures of myself and wish I could be pretty again.
My hair is starting to fall out I think, or better yet I check 5000 times a day to see if it is coming out. I decided that I am tired of obsessing about it and I just want it gone. I dont want to wait until I can pull out handfuls of hair, and I definitely dont want my girls pulling it all out. I will be hard enough for them to see me with no hair, much less be the ones pulling it out. So, tonight my husband and I decided to shave our heads together.  My fabulous sister in law came over to cut it all off.  First we had a little intervention for her and gave her all of my maternity clothes. It was hard to get rid of them but I will never be wearing them again and its hurting my stomach to think about how uncomfortable she has got to be squishing that big baby bump into her regular jeans. So, off they go.  Bye bye cute belly shirts. Next up, a bunch of hair on my kitchen floor. 
I made my husband go first so that he wouldnt chicken out and so that I would be able to relax about it.  It's just hair. Who cares, right?  I thought I would be a lot more emotional about losing the hair but I really was to a point that I wanted it gone. I was going to be the one to decide what day I lost my hair, not that damn chemo. Sorry cancer, but I'm about to make you my bitch!

This is a picture from a few years ago. Before getting fat from babies and then getting skinny from chemo.

This is our before picture.

And our after picture.

This is my wonderful sister in law Angie.

This is Sassy Sara and her husband Pete Jr. Gary looks just like his dad did when he was younger! We laughed so hard at this!!

And this is Simple Sara and her husband El Kurto Cobaino.  Not his best look!!

 

 

 

 

 

 

Return to work??

Today was my first day back at work. I started my morning with a phone call from my boss. She asked how well I had been eating and drinking (which wasnt good) and then gave me orders for what nausea meds she wanted me on, plus some more hydration.  I sat at my desk working, trying to get back in my groove until my hydration was done, then I gave up and went home.  I was too nauseated to try to sit at my desk. Before leaving the parking lot I had a little mini breakdown.  I know it sounds so stupid but I was so determined to get through my first day at work that I felt like a failure.  I felt like no one thought I could or should come back to work today and when I left early it felt like I was telling them they were right.  I cant explain how hard it was to leave work, knowing how badly I wanted to be able to stay.
I went home, took a 2 hour nap, ate, and felt a little better. I'm just going to have to put on my big girl panties and try this again tomorrow.

A little hydration followed by a little hair chopping!

Last night was a little rough.  I did fine until about 7:00. Then came the nausea. Its like being pregnant and miserable. Nothing looks good, nothing sounds good, and smells make we want to vomit.  I was able to eat a small dinner and went to bed early.
This morning I went to the clinic for my Neulasta injection (which helps my body produce white cells so that I am not as immunocompromised.) I had Amy as my nurse, who is one of my best friends and one of the most amazing people I have ever met.  She gave me some hydration today because I didnt eat or drink well last night or this morning. She also gave me a pink and white KU hat with a pink ribbon on the back. Like I said, she's amazing! Everyone thinks I'm crazy but I am planning to return to work tomorrow.
After my appointment at CCK I went to Salon Q where my sister in law works and had my hair done.  I have always wanted to know what my hair would look like in a pixie cut so what better time to do it then right before it all falls out.  Angie, as always, made my hair look perfect. My husband hates it but he will get over it.

"I wear PINK for Sara"

Today is the first day of chemo.  I am getting Adriamycin and Cytoxan every 2 weeks for 4 cycles (8weeks total) and then I will have Taxol after that.  I walked in our office this morning and checked in at the front desk like any other patient.  I saw several of the staff had on the same shirt but just thought it was some kind of "wear the same shirt day" or something. Then I looked closer.  Every single person in the office was wearing the same shirt. They said "I wear PINK for Sara." It brought tears to my eyes (but dont tell anyone. I dont want to get a reputation as a softie.)  I was asked if I wanted to wait in an exam room instead of sit in the lobby. No, I want to be like the rest of the patients. Im hanging out here with them. While I waited I had some great conversation with several of my patients that I would have missed by sitting in an exam room all by myself. I had my lab and then went to my treatment room.  I was greeted by my nurse, Paula (who is my boss!)  Its not everyday that you are given your first treatment by your boss!  I feel special that she came to our office today just for me. Or at least I tell myself it was just for me. She told me what things I could do at home to prepare for the misery that I call nausea and gave me my handy dandy new patient packet that is full of all kinds of useful information (that none of our patients ever seem to read.)
My plan had been to get my first treatment in the treatment room and every treament after that I wanted to get at my desk, which is right up the hall.  But, during my first day today I was in a room with an older lady who had metastatic breast cancer and was there to start a new treatment also. Her last several treatments had failed and she now had disease in her liver. She was the sweetest woman. We talked about our disease, our families, our wigs. Routine girl talk.  I decided then that I wanted to take off all of the days I get treatment. By sitting at my desk working, I was afraid I would miss these special moments. I enjoyed my coversation with this woman and was looking forward to meeting the next person I would share my room with.
After chemo I went to the store and spent a peaceful afternoon at home writing. It's amazing all of the support I have had through this. CCK has been very supportive, but its a whole new level of support when you have your own t-shirt! Someone asked me why I went to my treatment alone today. I wasnt alone.  I had a whole office of people that love and care about me.

This is a patient of mine that was celebrating getting her last chemo. I had to stop in for a quick chit chat.

Dr. Schulz was not in the office today but wanted to show his support. He texted me this picture to let me know he was thinking about me.

This is the area I work in. There is Lisa, Jessica, Dr. Page, Vonnie, Angelica, Amanda, and Stephanie (who hopefully doesnt go into labor until I get back on Wednesday.)

This is Dr. Nabbout, Sara (front desk), Cheryl (business office), Jen (chart prep), and Elizabeth (research).

This is a view from my chair of Dr. Truong and Paula.

Just another one of those pain in the ass patients!

Today is the day that I see the wonderful Dr. Phu Truong. I feel blessed to work in a place where I am surrounded by so many good oncologists. How did I choose mine? Long story.
Almost 10 years ago I graduated from college and started as a nurse. I worked at Via Christi St. Francis (or Via Christi on St. Francis as the kids these days call it) on the cancer floor, which was 7SW back then.  I got to know all of the oncologist and their personalities (some were much better than others.) Then a few years later the "new" doctors arrived. There was Dr. Truong and Dr. Reddy, young, eager, and still polite. They were wonderful to work with and both so smart.  I told myself that if I were ever going to be the nurse for a doctor in the clinic it would have to be Dr. Truong, hands down. But that would never happen...so I thought.  In 2008 Dr. Truong's nurse left and he needed a replacement. He approached me about it and also invited me to a dinner that he was speaking at, where I would meet my new boss and coworkers. They were all wonderful and I decided to take the chance. I didnt know if I would like working 5 days a week or sitting at a desk all day but the opportunity wouldnt likely come around again so I took it.  It was the best change I ever made.
Right after starting at the Cancer Center of Kansas (CCK) my mom got tested for the BRCA mutations. We were painting the kitchen of a house I used to own in Hutch when she told me she was positive for a BRCA 1 mutation.  I laughed and thought she was joking and then quickly realized she wasnt when she started crying. Whelp! That meant that I would have a 50/50 chance of having the same mutation. I immediately made an appt with my OB/GYN to get tested and she referred me to Dr. Cusick.  Before I went to that appointment, Dr. Truong printed me off all kinds of information to read about the testing and what the results meant.  I knew I would have the mutation, and Dr. Cusick confirmed that at 9pm on a Thursday night when she called me my results. POSITIVE. She said she was going to wait until Monday to call me so that I wouldnt worry but thought that I would worry anyways, so she decided to call me that night. The first place I went the next morning was Dr. Truongs office.  He was there to answer my questions, and was genuinely upset about the results.  I have a HUGE level of respect for him and decided after that to make him my oncologist if I ever needed one. So, he has had about 5 years of knowing that today was coming.
So...my appointment went well. Gary was able to ask all of the questions that he needed to ask and we are able to start treatment on Monday. The one conversation I wasnt planning on having was about having any future children. Dr. Truong does not think it is safe (from a cancer standpoint) to ever get pregnant again, and would like my ovaries gone with my next surgery. That leaves us with adoption (which Gary is not interested in) or surrogacy (which is complicated.) "Hi, my name is Sara. Can I use your uterus?" Again, if we didnt have these "could be babies" out there this would be so easy. My best friend had offered at one time to do this but its hard to ask someone to wreck their body all in the name of you having another child.  Im sure we will revisit this topic someday.
For now I plan to enjoy my weekend, because next week will be rough!

Too cool for school

Yesterday I saw the plastic surgeon and got my new rack pumped up a notch. I went from a B to a B+!?!  It feels strange having someone put a needle in your boob and squirt saline in.  In all reality, my chest is completely numb. I didnt feel a thing.  I wish I could do this at home though. Not feeling big breasted today? Have a squirt of saline!!  I dont know that I can tell that much difference but it was an interesting experience.
Today was a beautiful day. It is about 70 degrees and sunny. The perfect day for a walk or two. My mom loaded up my little divas in their stroller and off we went. They sported their rock star sun glasses and we pranced around the neighborhood looking super cool.  I am feeling great and looking forward to tomorrow when find out what day chemo is. Im pushing for Monday.

Tonight my husband and I went for another walk, this time at a nearby park. It was so nice walking around in the warm breeze.  I feel alive and I am enjoying life. It has been a struggle letting other people do my duties. My husband is making a wonderful "Mr. Mom" though. Bella isnt too sure, but Emma is good as long as she has her ducky!!

The Wig Goddess!

This morning I had a MUGA scan at our main office location to check my heart function. One of the chemo meds that I will get can weaken the heart muscle so we have to make sure my heart function is normal to start this.  This was pretty uneventful. Just one more IV stick.
This afternoon I made an appointment to go see The Wig Lady. She should be called The Wig Goddess. I took my husband (who sat in the waiting room the whole time) and my sister in law, who is also my hairdresser(who helped tremendously). The wig goddess asked me a bunch of questions to start out about what I was looking for in a wig. I really had no clue. I knew I wanted something different than what I have. I didnt want to put on a wig intending to look exactly like I do now. It wouldnt look the same, or feel the same.  I wanted something different.  She brought out the perfect wig.  It was a long human hair wig (that was not cheap) that I can curl, straighten, braid and do all the fun things that my flat straight hair would never think of doing.  I also got a synthetic wig that is short and brown. It looks a lot like how I usually wear my hair but it isnt the same color. With a synthetic wig I cant use any heat to it and the #1 cause of death to a synthetic wig is opening the oven with your wig on.  Seriously!  One more reason for me not to cook. I felt much better and much more prepared to have chemo knowing that at least my hair would look good!

Dont worry, I didnt buy this red thing. But I couldnt leave without trying it on!!

This we will call Sassy Sara.

This we will call Simple Sara. (I think my husband likes this one the most.  It reminds him of when we started dating, only my hair was a little darker than this!)

RIP Drains-I cant say it was fun, or that I will miss you.

Last Wednesday I saw Dr. Voge, the plastic surgeon and she removed 2 of my 4 drains. It felt almost wonderful. The other 2 drains were ready to come out the next day but I still wasn't feeling great and thought I could wait until today. 
My follow up appt with the fabulous breast surgeon, Dr Cusick, was today. I love her for taking out my last 2 drains. Now I can ditch this "fabulous" mastectomy bra and go without.  This bra has rubbed me the wrong way, literally.  My cleavage and under by foobs (fake boobs) is chaffed and it was so uncomfortable.  I feel like I can finally breathe.  Bye bye bra!!  Take your nasty drains with you!
I am starting to fit into my "skinnier" jeans and Im not minding it one bit.  I hear constant nagging from my husband though about eating.  Blah blah blah. He likes his ladies with curves. I am shedding mine and he will get over it. Its amazing how much better I feel.  I blow dried my hair, put on make-up and wore more form fitting clothes today, instead of my trusty T-shirt that hides the drains better. Im going to make the most of today-I feel great!!

I huff and I puff, and then I get hydration

On Sunday I decided to run a fever of 100.2. I took 2 Tylenol and a nap. When I woke up it was 101.6.  I felt like crap.  My husband called the number on our paperwork from the surgery center. We were told to "take off my socks" and call back if that doesnt help.  Are you kidding? Have you seen my feet. No thanks!  I put on cooler clothes and the fever went away. I continued to have chills off and on that night and the next morning. 
On Monday I wanted out of my home prison cell.  I dragged my husband and my sister in law to look at wigs.  We went to the American Cancer Society and didnt find anything. It was a great experience though and Jennifer was really nice!  She ordered some things in for me and said I could come back to try them on when they came in. We left there and went to Honie's.  This was recommended to me by a patient that had a really good experience there. She went looking for fun wigs and had success.  It was an interesting experience, I will say that. The asian family that was working was wonderful.  I tried on a ton of fun wigs and ended up getting 2.  They are probably not the wigs I will wear the most but they will definitely get some use.  I was exhausted after that.
I had a lot of nausea that night and this morning and overall just feel terrible. If these drains would just come out I could sleep and quit taking the pain meds. I was texting back and forth to my friend Stephanie telling her how I was having nausea and felt bad. She is covering for me at work and relayed this info to my Dr. I then got the message I was dreading-He wants to see you. Blah. Bitch, Im tired, nauseas, and panting like a dog in heat! I am NOT dragging my pasty white butt up there.  And then the voice of my nurse self said "Dont be that annoying, noncompliant patient." So I put my shoes on and off we went (right after I decided to lose my lunch). As a worker at the Cancer Center of Kansas I walk from the parking garage to the office daily. I even take the stairs. It is a short, easy walk and I have never understood what my patients complain about.  Until today.  It felt like I ran a marathon just getting to the building, and I even had to rest.  Apparently I looked as bad as I felt which prompted lots of blood work, an exam, and then hydration and nausea medication. I wont say I felt a lot better after, but I did feel a little better.  And now I know how hard it is to come in when I ask my patients every day to do the same thing. 

Who needs a Michael Jackson RIP hat? Honie's has them.

Wow...can we say 80's rock band? It was still fun to try all of the wigs on even if I didnt find the right one.

Drain drain go away!

Good morning! I hope you all slept well. I did not.  I am a stomach sleeper.  That is not possible when you have a major surgery to your chest. Plan B-my sides.  Also not possible.  I have 2 drains coming out of each side.  Plan C-sleep on my back for a few hours and then get up early (around 5) to get my catheter out and take my first of many walks.  I think I walked about 4 times before they decided I was well enough to go home. My plan worked.
Now I get to take my favorite little pill Percocet again.  It is great for pain but makes me itch like a junkie looking for his next fix.  My entire body itches and I cant scratch any of it. Damn.  GARY!!!!!  I have played my "cancer card" very few times so far (my husband may disagree) but will be using it a bunch in the next week for back scratches.  I imagine it as a punch card.  Once I use it so many times I get free uses...for more back scratches. Sounds good, right??
This week's goal: find out a way to let people help me.  I have a hard time letting people do things for me that on a good day I could do for myself.  One of my fabulous patients set up a meal train for me for the next 2 weeks. This means that someone is bringing us dinner every night.  This was a big step for me accepting help.  We shall see how I do the rest of the time. 

These flowers were delivered from my good friend Angela Lawson.  I'm not minding being spoiled one bit!

Bye Bye Boobies

Today is the big day. Im trading in my 34Ds for a chance at being cancer free. I guess it's worth it! I think my entire family, friends and coworkers are handling this much worse than me. I have had my moments but feel pretty calm and relaxed going into surgery. My husband may disagree.  I have not really ever been nervous for surgery.  It seems pretty standard. You have surgery, you are sore, you get less sore, you feel better.  Only in this instance all of the "you's" are now "me's".  I have seen Dr. Cusick for several years now in the hopes that I would have my family, and then a prophyllactic mastectomy and then never have to get cancer. I had already met with a plastic surgeon even to discuss options. I met with Dr. Cusick after my husband and I struggled for only 6 months to get pregnant. I was in a panic that I would get breast cancer before I could have kids and then wouldnt be able to have kids at all. She told me that I had plenty of time and not to worry. (We laughed about that and how wrong she was in my appt a few weeks ago.) Her nurse practitioner stayed in the room longer and told me it would be reasonable to start exploring why we werent getting pregnant.  I am so glad that we did that or I would be going into surgery without children and pregnancy would no longer be a safe option.
I kissed my kids goodbye and gave my mom a hug.  I made her watch the girls during surgery because I knew she would be a nervous wreck and it would keep her occupied.  I took off for the surgery center with my loving husband. My dad drove all the way from Pueblo, Colorado the day after a major snowstorm to sit in the waiting room for hours.  I walked in sporting my brand new hot pink shoes, my workout pants, and my hot pink shirt that reads "Nobody cares if you finish first. Walk with courage. Run fearlessly. Finish with strength."  It seemed appropriate today.
So far as a cancer patient I have learned many things.  I enjoy every day that I am given and I soak up every moment of time with my family. I also now understand what my patients are going through and can relate to them much better. I hope this makes me a wonderful nurse.  I also have learned that I do not want to be defined by cancer. I will not sit around and complain about the cards I was dealt. This journey is going to make me a better person and I am going to absorb every bit of wisdom that I can. I hope I can inspire my patients and show them that they too can do this! I allow myself only minimal of time to "dwell." I dont want to end up like a certain family member that only focuses on the negative and makes any situation about her. I want to hold my head high and proud.  I am PROUD to be a cancer survivor.  I am COURAGEOUS, I am STRONG, and I am crying while I type this. Damn.
Surgery went well and the Dilaudid PCA was even better.  These drains are going to be a huge pain in my ass. There are 2 on each side and they are not comfortable at all.  My entire chest is numb so the incisions across each breast are painless...for now. We shall see what tomorrow brings! Goodnight!

This is my best friend since high school. April is the most amazing friend a girl could have. She sent me this picture the night before my surgery to show her support. I love her so much!

 

I had to have my sentinal node injected with dye prior to checking in a the surgery center.

Waiting for surgery!!

 

Tamoxifen...we need to break up.

This weekend was terrible and fantastic all at the same time. I got to go to a KU game (I havent been to one since highschool) and I quit taking Tamoxifen. We were given 4 tickets to a game from Dr. Truong. I am his nurse, and now his patient and this was a much needed break from reality.  We decided to take Gary's cousin and her husband because we love spending time with them and thought that they would really enjoy it. Nicole is pregnant and has the wonderful nausea related to her pregnancy. I am taking Tamoxifen and havent eaten a good meal in over a week. My weight is down about 10 lbs which I am kind of happy about but the misery that comes with that I could do without.  Besides the nausea I am having joint and muscle aches, hot flashes, and terrible anxiety (some of which may just be from the diagnosis but I doubt it.)  I feel so bad that I did not take the Tamoxifen yesterday or today and have no plans to restart it. The game was amazing but by the end of it I hurt so bad from sitting on the hard bleachers, not to mention the several hour drive home. Thats it. Tamoxifen, you mess with my Jayhawks, you mess with me.  We are done. I want to break up!!
I checked with Dr. Truong today and he said that I will have to take Tamoxifen for 5 years after my chemo. So I guess this is more of a "trial separation." I will try it again but I bet we break up for good. 
On a side note-one of the side effects that were listed as "call Dr. IMMEDIATELY if you have any of these..." was a decrease in sexual desire or ability.  You mean to tell me that if I have to pee in the middle of the night and all of a sudden dont want to have sex I should call my Dr??  No thank you.  I ran this by Dr. Truong to see the look on his face.  I said "Is this seriously an emergency? Are you kidding me?"  His response was "It may not be to you, but it may be to your husband." We got a good laugh out of it and then I came up with a compromise.  If I end up with this side effect, I will sprinkle this in my husband's food also so that he will have it too! Then there will be no emergencies!!  Problem solved.

Babies and flowers

This has been one busy week! I saw the breast surgeon and had my hip MRI on Monday. The results were normal. I saw the plastic surgeon on Tuesday.  Surgery isnt until the 28th. What will I do until then? Obsess. Thats what I will do.  I have perfected the self breast exam, doing it about every hour since last week.  And yep, this mass is growing!
My tumor responds to estrogen so Dr. Truong put me on a medication last week called Tamoxifen that blocks the estrogen so the tumor wont grow. It is more to ease my mind than anything. However Tamoxifen comes with its own bag of fun. And I was given specific instruction. "Dont call me in the middle of the night when you are having hot flashes. Call Vonnie (the nurse I work with.)"
I cant wait to see what fun Tamoxifen brings!!
Today is Valentine's Day. My husband brought my babies, and a dozen roses, up to my work for a visit.  It was a much needed break from the chaos inside my head.  Their cute little faces have a way of making everything all better. They also remind me that we had plans to get pregnant again this summer. Those plans are indefinately on hold. We had to do IVF last year in order to have these girls and we have 2 embryos frozen. I sometimes feel like a rabbit with a carrot dangling on a string in front of me.  If we were like any normal couple and did things the normal way, this decision would be so much easier. We would just be happy with what we have and move on.  Going through the struggles of trying to get pregnant I think I appreciate what I have been given more than some.  But it is just too hard to give up on our 2 "could be babies". I know my reality.  My tumor responds to hormones. Pregnancy makes your hormones go crazy.  Basically if there are any tumor cells left floating around they will get to eat at an all you can eat buffet of hormones for 9 months while I would be pregnant. So that option is out. Our other options are surrogacy and adoption (which doesnt fix our 2 embryos problem.)  We will revisit this topic in a year or so. Im not really ready to think about it.  But I cant stop thinking about it...if that makes sense.  What if Emma and Bella never get to meet their siblings? Will they be enough for each other? I hope so.  I feel like I have failed in the maternity department. This uterus is useless to me now. All I wanted was to be pregnant 1 more time...and I failed.

Me time

My bone scan on Thursday went well, although I have to have an MRI of my hip on Monday to look at a questionable spot.  Im not having any pain there but I have been running a lot lately. I had registered to run my first 5K the day before my MRI. That wont be happening now. Oh well, there are many more 5K's to run in!
Today my wonderful sister in law is doing my hair.  I have one sister who is mentally handicapped and she is such a blessing in so many ways, but I have never had a normal sister relationship and am always jealous of people that have that.  Luckily my husband's entire family is perfect! I get the sister I never had, along with some of the best parents a person could ask for and adorable grandparents. Im a lucky girl.
Today we are cutting my hair short! It is already short but we are going shorter. Not quite to a pixie cut but almost. My hair is going to all fall out once I get chemo so I might as well experiment now. And....its perfect!! I love it!!  I have always wondered what I would look like with a pixie cut so we decided we are going to try it right before my hair falls out. That way if I hate it, it will fall out anyways. The perks of being related to a hair stylist.
Next up, retail therapy at my favorite getaway spot. Target.  I can go in Target for 1 thing and walk out with an entire cart full of stuff. Just dont tell my husband! 

My cute new do!!  I made a post on Facebook today about cutting my hair all off! I need to be more specific next time. I immediately got a call from my mother that my poor sister was in a panic that I went crazy and shaved my head. Not yet, Jenny. Maybe next week!

Damn

Today is the day I get my results back. Needless to say I did not sleep last night and have been too nervous to eat (not bad for a diet plan). I went to work like any other day and watched the clock all morning. As the clock got closer and closer to 1:00 I got more and more nervous.  I knew what the results were going to be.
At 12:45 there was a page overhead for Dr. Truong to pick up a call from Cypress (the place I had my biopsy). He was in an exam room with a new patient and it seemed like the longest appointment ever!  As I was waiting for him to finish I was trying to keep busy.  I walked over to take the incoming faxes off of the fax machine and distribute them.  There was only 1 fax. My MRI results.
Invasive ductal carcinoma, poorly differentiated, Grade 3.  SHIT SHIT SHIT.
When Dr. Truong came out of the room with the new patient he told me what I had already learned and immediately ordered scans.  When I say "immediately" I mean that I was on the CT table an hour later. The nurse I work with was putting in some orders, one scheduler was printing the orders and scheduling the scans, and the other scheduler was shouting out the diagnosis codes needed for insurance to pay for them.  Talk about team work.  Off I go to my CTs.
When I say I had a meltdown yesterday, today is much worse.  And midway through sobs I hear "Im going to love you through it." If you havent heard the song, you need to.  I dont believe that there is a God that is "in charge" of everything but I do believe that things happen for a reason. This song played when it did because that is when I needed it to play. I also believe that people come into your lives at certain times to teach certain lessons or offer support for a reason. Here's my proof in that.  One week ago I had to call one of our favorite patients to tell her that her breast cancer had returned.  I wanted to make someone else do it or crawl in a hole and pretend this wasnt happening but I sucked it up and called her. I think I could hear her heart break a little. I felt terrible all day and when I went home I checked facebook.  Someone had posted a comment about how today was terrible and cancer sucked. I only saw it because one of my friends had "liked" the comment. It was posted by my patient's sister.  I was feeling like I should "friend request" the patient and really wanted to tell her how sorry I was but I wasnt sure if it was appropriate to befriend a patient.  I did it anyways.  We ended up having a wonderful conversation that night that made me feel like I really can make a difference and also remembered that I learn more from my patients than they could ever learn from me. Today I am going to need her as a support person.  I look up to her and hope I am as graceful and courageous as she is.
The scans were easy physically but draining mentally. As an oncology nurse I know the possibilities and know what my outlook is for all of these options.  What if I already have metastasis everywhere? Am I going to die? Again, what if I dont get to see my kids grow up? What if we want more kids? What will life be like with no mother??  I immediately wanted to go home and leave videos and birthday cards for them for every year for the rest of their lives. But I told myself not to rush. Slow down. Deep breath. You will be fine, you are in good hands.
I have a bone scan in the morning.  This is my biggest fear. Bone mets=incurable cancer.

The beginning

Today is just like any other day. I woke up, fed my kids, ate breakfast, had my coffee, but then instead of going to work I went for my yearly breast MRI. I am a 31 year old energetic mom of twin girls and have the BRCA 1 mutation, which means I have a really high risk of getting breast cancer. My mother had it, my grandmother had it. Blah blah blah. I have mammograms yearly and MRIs yearly so that they alternate every 6 months. I have been doing this every year since I was 26.  So why does today feel different?
On my way to the scan I was listening to my ipod. I told myself that if the song "Im Going to Love You Through It" by Martina McBride came on, the results would be bad. But if not, I was good.  The song never came on.  The scan was easy, as always.  I went back to work, finally ready to start my day.  I had a feeling driving to work that there was going to be something abnormal in my left breast.  Whether it be a cyst or cancer, something was there. I could not feel it, there was no pain.  I just knew.  I have never had anything abnormal show up on that side so I kept telling myself that this thought was stupid...until I got the call a few hours later from my OB/GYN that there was something on the left side and I needed a biopsy.  SHIT! 
Now, I am oncology nurse and have known about my cancer risk for years.  I have prepared myself for losing my breasts and my hair.  My husband offered me his nipples on our third date. No thanks, but I WILL marry you someday. Knowing what I know has not made today any easier.  Here's where the perks of being an oncology nurse come in...
I got off the phone with my OB/GYN and immediately had our medical records people get the copy of my MRI.  I then took it to the doctor I work for.  He looked at the report and his jaw dropped and he says "Who's the patient?"  I said "Me." He then said a few curse words and wanted to know when my biopsy was scheduled.  I was waiting on the other Dr. to call the surgeon and call me back with a time.  We would soon find out that she was out of the country for the next week. They made me an appt for her first day back in the office.  Dr. Truong was not pleased with that and called the place I had the MRI and pulled some strings to get a biopsy done today.  My drive there was sort of a meltdown.  I am not ready to have cancer.  Did I mention my twins are only 8 months old?? What if I die before they really know me and dont have any memories of me? What if Im not around to see their first day of Kindergarten, their high school Prom, their graduation, their weddings?
OK, snap out of it.  The biopsy went well. No lifting my babies for 2 days, which will be terrible, but hopefully everything went well.  The results will be back at 1:00 tomorrow. 
Talk to you tomorrow!!