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!