Thursday, December 17, 2015

The one with radiation, but no super powers

Well, the next-to-last piece of my cancer treatment puzzle was radiation. I did 33 sessions of this. Radiation took place every day, Monday through Friday. Despite getting zapped 33 times with fancy electrons, x-rays, gamma rays, and whatever -- no super powers.

I found this meme on the intertubes. The typos are kind of killing me on the inside, but you get the point. 

Really, radiation wasn't all that bad. Especially when I compare it to chemo and surgery. No nausea, no hair loss, no bone aches. The main thing I felt was tired. Not every single day, and not beginning with the first session. It took a little while to build up, but I'd say after the first week and a half I could feel myself starting to drag a little bit. Then about every three or four days, I would just be totally exhausted. So wiped out that I would fall asleep at 7pm and stay asleep until my alarm went off for work the next day. Because of this, I'm so glad that I scheduled my appointments in the afternoon at 3:45pm. If it was just radiation, I could be in and out in 30 mins. Once a week I had to do x-rays and that added another 15 minutes. Now, 30-45 minutes doesn't seem so long, but when you are laying perfectly still with your arms above your head it can seem like forever. And there was no clock in the room, so I would resort to counting the number of songs that played and estimated how much time had passed. What I appreciated more than anything was that the radiation therapists had good taste in music and changed it up each day. 

All things considered, when compared to chemo treatment days, it wasn't too bad of an experience that's for sure. So, let me try to describe how all of this worked, step-by-step. 

My very first appointment consisted of a full body scan, getting all of my planes marked, and tattoos (yes, I said tattoos). They sent me through a scanner (the tube kind) and they drew all over my chest with Sharpie. The radiation techs were making sure that they could set up my treatment plan to the exact specifications necessary (kind of like programming a CNC machine). After the scanning and the drawing, they gave me 5 or 6 little tattooed dots - - some right down the middle of my chest and one on each side. These little dots are black light sensitive ink injected just under my skin. That's right. I glow under black light. I am my own version of Iron Man with my tiny glowing arc reactor dots. These glowing dots allow the radiation techs to quickly line me up in the exact same spot each day. I learned that radiation is a pretty exact science. 

My first session of radiation was on October 15, 2015. Just a little over one month after my double-mastectomy and reconstruction. Here is what one of the two radiation rooms looked like: 

Here's the radiation room. That dome like ceiling actually has little blinking star lights that look like outer space. It has a purplish pink light and then the twinkle stars when it is turned on. Then I laid on that slab, my legs went over the pillow, and then they adjusted the table to the right height and position. Then that star ship Enterprise looking thing can rotate all of the way around the slab to do both x-rays and administer the radiation treatment.

Now, in my case, I had to take my top off and wear a hospital gown. This is probably because the radiation therapists had to regularly line me up to a very specific set of measurements and regularly draw on me with Sharpies. I got to leave everything on from the waist down. Kinda strange to be wearing your pants and boots paired with a hospital gown, but oh well.

Here's the little room where you change into your gown. There are little lockers outside to put all of your stuff. You can keep all of your jewelry on, and your glasses, and your shoes.

Seriously. I will not miss those gowns. I mean, I am no fashionista, but even I know how terrible they are.  

Now, I gotta tell you, I was definitely worried about the damage that radiation could do. My radiation oncologist told me that he wanted to see my skin turn a little reddish pink. That didn't seem so bad,  but there was a chance that I could get a sunburn of sorts. There was a chance that it could have been painful. That I might need a prescription for lotion with aloe and lidocaine. I was worried, so I was really diligent in following doctor's orders and applying a good, heavy lotion to my skin each morning. I also made sure that I was drinking plenty of water each day. I wanted to make sure my skin stayed hydrated and pliable. During this time I continued to see my physical therapist who is also a lymphedema specialist. She helped me address any issues I had with cording (Remember I mentioned cords last time? The hardened "strings" of lymphatic fluid that need to be broken up?). Each session of radiation was a fresh trauma to an already sensitive and damaged area. When I would see her, she would have me run through the exercises that I was also doing at home, then work on any cords, and try to monitor my incision areas to see if I was developing any noticeable scar tissue under the skin. It was important to make sure that I didn't get a build up of scar tissue that could glob up and push on my implants. Again, I count myself lucky that I really didn't have any terrible side effects. No burns, no sores. Just a few tan lines and some peeling skin that looked like reverse freckles, see:

This is my next-to-last day of treatment. You can see where some of my skin is starting to peel.

You can see here that I definitely got a funky tan from the radiation, but no burns and no open sores. Thanks Eucerin lotion!!

After 33 sessions of treatment. I was done. On my very last day, my friends and co-workers gave me quite the surprise. They threw me a "happy last day of radiation" party. There was cake and t-shirts and music and laughter and it was great. That group of folks have been wonderful. They have been so patient and understanding and caring. I really hit the jackpot there.

They understand my deep love of good puns. THIS IS THE BEST CAKE EVER!

Oh, and did I mention that they made t-shirts with my face on them and they all wore 'em to my party? (This is my husband, not a co-worker. I can plaster his picture all over the interwebs without permission. Didn't want to do that to my co-workers.)
I showed up to my appointment that afternoon with a smile on my face and gratitude in my heart. I really didn't care that they were running late. I really didn't care that I sat in the waiting room for almost an hour. I was just so glad that it was my last day and I was eager to give the radiation therapists the thank you gift I put together for them. (5 mixed-tape CDs to add to their stash of music. As I mentioned earlier, it is really nice to have music playing while you're laying on that table. I can only imagine how many times those folks have heard the same songs over and over. Seemed like the very least I could do was to give them some new tunes.)

Another fun surprise that day was my radiation diploma. I graduated and this is my official certificate of completion. How great is this? So thoughtful and caring and it made me smile.
I even got a diploma for completing radiation. Those radiation therapists were fantastic.
Again, I am so grateful for my team of ridiculously awesome doctors and medical professionals. They did such a great job of giving me the treatment I needed to ensure that I kick the cancer's ass and keep away for a good long while, ideally, forever. They made sure I was well informed and well cared for. You really can't ask for more than that.

So, what's next? Well, I'll keep going to my physical therapist for a while so she can keep working on those dang cords that keep popping up and to massage away some small areas of scar tissue under the skin of my incision lines. Then just one more small, outpatient procedure. It is highly recommended (read: as close to a demand as you can get from your doctor) that I have my ovaries and fallopian tubes removed. Because I tested positive for BRCA, I have an increased risk for ovarian cancer. No ovaries = no ovarian cancer. Since I've definitely hit my deductible for the year, there's no time like the present to get that done. More on that later, maybe. Otherwise, it's just a matter of staying healthy. My family joined the local YMCA so I can keep active and regain my strength, flexibility, and endurance (plus it'll be fun to go to the Y as a family and swim and play basketball and stuff), and then I'll meet with my oncologist on Christmas eve to kind of recap the year and figure out a plan going forward.

So close to being able to say "I'm done with all of my cancer treatments". I'm ready for that day. And I'm still so stupidly grateful for all of the wonderful doctors, family, and friends who have been there for me from the get go. I'm ready to start giving back and sharing the light and love I've been so lucky to receive.

SO. CLOSE. TO. BEING. DONE.  Ahhhhhhh!!!!

Again, thanks to the internet, we have jokes like this. 

Sunday, November 15, 2015

Yup. I did it again. Another art show.

That's right, my friends. I definitely put my poetry in another art show.

This is the third time I have entered my poetry on canvas into the University of Nebraska-Lincoln Staff Art Show. As you might imagine I was once again nervous about doing it, but did it anyway. Once again, I'm glad I did. I kind of like the pressure to perform, knowing that I am working on a deadline with a very public outcome. It certainly freaks me out and gives me more than a little anxiety - but I do kind of like it.

This year, the art show is being held in the University library - - Love Library. I mean, what is better than having your art/poetry hung in a library? It's fantastic!

Here's my two pieces. 

...and here is what they look like hanging with other pieces. 

You may or may not know that my husband is a bow hunter. So, I took one of the deer skulls from his harvest last year and painted the face black and then put some designs in silver on it. Next, I took it outside and snapped some photographs, some with that skull by itself, and some next to a doe skull. I took those photographs and manipulated them on my computer. Then I transferred the images I liked best onto canvas. Last, but not least, I added the poem. In case you can't read the microscopic text in the photos I posted above, here is the poem I wrote: 

These Bones

These bones
are the only permanent thing about me.

I can change my mind
but I can never change
my secrets
and smiles full of big teeth -
or is it big smiles full of teeth?

Every demon wants its pound of flesh.
But me,
I just want your pure white bones.

People tell me to walk away but
this need for you is bone deep and
my bones
well, they follow me everywhere.
Don’t they know a person can never outrun
the shadow inside their body?

I am the darkness and the skeleton in this closet
sitting close to your button down shirts that I used to adore.
The button down shirts that smell like
stale coffee and strong promises -
or is it strong coffee and stale promises?
Sometimes we confuse me.

It’s funny how everything changes.
Everything but these bones.  
These bones
are the only permanent thing about me.

These Bones, Jennifer Klein, 2015

These Bones, Jennifer Klein, 2015

Sunday, November 8, 2015

The one with the surgery

So, it's been almost 2 months since I had surgery. This means I've had 2 months to heal physically and emotionally. Despite all of the trepidation, stress, and panic that came with surgery - I am relieved to have gotten rid of the boobs that quite literally tried to kill me. Not sad to see the tumor twins gone and a new set of much more docile and calm boobs in place.

Surgery is some scary shit. I don't care how "routine" the procedure or how long you are (or aren't) under the knife - it's scary. I can't lie to you, I was fairly terrified about my surgery. I had a port removal, double-mastectomy, sentinel node removal, and reconstructive surgery all in one procedure. That was roughly 3 and a half hours on the operating table. But, before I get ahead of myself...let's back up and I'll tell you how I got from point A to point 34C.

One of the very first things I did was make individual appointments to speak with a general surgeon, plastic surgeon, and a radiation oncologist before I made any official decisions. I was 99.9% sure that I would need to undergo radiation and I wanted to make sure that whatever surgical procedure(s) I chose would make the most sense for optimal radiation treatment and healing in both the short term and long term. After discussing quite a few possible options, I decided to go with a one-step reconstruction process. This is when the general surgeon comes in and performs the mastectomy, then when that procedure is finished, the plastic surgeon comes in and performs reconstruction. This means one time under anesthesia, one surgery, and one healing process. No need for tissue expanders, multiple visits to plastic surgeon to fill the expanders, and no second surgery to replace expanders with implants. My radiation oncologist said that he could radiate with the implants in place. The one real risk is that the radiation could cause some internal scarring and "globs" of scar tissue that might push on the implants. This would require some fixing from a plastic surgeon. But, there is a chance that everything will go along just fine and when I'm done with radiation, I'm just simply done. That's the hope. Every woman and every case is different and I would highly recommend that women are sure to talk with all medical professionals involved and determine the best plan for herself - - but I think it is most definitely worth it to see if one-step reconstruction is an option.

After I gathered all of this information and had some long and intense conversations with my husband, we went ahead and scheduled surgery. They gave me about three weeks to get my affairs in order. I had to make sure that everything was all squared away at work (I would need to miss about 4 weeks) and make sure that I had everything all situated at home, literally. (I would have limited range of motion - so I needed to make sure things that were up high in cabinets was down low where I could reach them.)

One day at work, I received a call from a nurse navigator with the hospital who suggested I come and take a breast surgery education class. I cannot stress to you how grateful I am that they do this for women. If you know anyone who is having a mastectomy and their hospital offers a class like this - - TELL THEM TO ATTEND!! I learned so much during that 90 minutes. I was of clear and sound mind, too, so this meant that I was able to retain the many details that would prove helpful when I went home after surgery. The nurse stepped me through every single thing that would happen from the moment I checked in to hospital on the day of surgery through the moment I checked out. She taught me everything I would need to know about managing my drain tubes, some simple exercises for stretching my banged up muscles, how to get in and out of chairs, how to sit up in bed, and so on. She also told me about lymphedema and the importance of finding a physical therapist who is also a lymphedema specialist before surgery. That way they can take measurements of your arms in order to track any possible swelling to be addressed post surgery. SO IMPORTANT. But I'll talk more about that later.

Okay. Surgery day. A few things.
1. They definitely put the I.V. in my foot. Terrible.
Because I was having lymph nodes removed on both sides of my body, they did not want to put an I.V. in my arm to reduce the risk of lymphedema. Considering my horrendous fear of needles, this was no small feat. (Oh, god. It was awful.)

2. They gave me pain balls. This means that the anesthesiologist laid me on my stomach, located pain receptors in my upper back that control my chest and side muscles, then they stuck wires down there that are attached to little tubes that are able to administer local anesthetic (kind of like mini-epidurals) over the course of 72 hours. This means that I did not have to take narcotic pain meds every few hours. (That meant no fuzzy head, no upset belly, and so on.) The down side is that I had to haul around two fanny packs containing plastic donuts full of "the good stuff".
This is just one of the pain balls. You can see the little tube inside there filled with "the good stuff".

Here you can see the wires that came out of my back, taped to my neck, that connected to the above pain ball. I had one of these on each side for about 3 days. 

Here's another shot of what those wires looked like coming out of my back. To be honest, it hurt worse trying to get the tape off of my skin than pulling those wires out. 

3. Surgery went like clockwork and there were no hiccups. Thank goodness. I woke up knowing that they had removed my real breasts, but when I looked down, I still had my feminine form and felt like the Jenn I was about 4 hours prior. For me, that was important. This is not the case for every woman. Some ladies opt to not have reconstruction and some do. One is not better than the other. Like I said, for me, it was important to maintain a feminine form and come out of this looking like I did when I started. It was one less thing for me to stress out about and one less thing to mess with my mind and emotions. I came out of this major surgery and felt emotionally whole. This allowed me to focus on healing physically.

4. The nurses definitely had me up and walking the same day. It was rough, but I did it. (I only almost barfed. No actual barfing.)

5. I absolutely got up the next morning and showered. (That was a debacle and a half and thank God my husband has nerves of steel because I was a hot mess.) Showering while you try to manage two pain balls and those wires as well as two drain tubes is a lot to manage. It's do-able, but the first time was definitely a learning experience.

6. I was discharged from the hospital the next day. At first this seems absolutely crazy, right? I just had major surgery, I have these pain ball things and wires coming out of my neck, oh, and I have two drain tubes sticking out of my body. BUT, I can tell you that it was so much better being uncomfortable at home in my own chair and my own bed than at the hospital.
This is a Jackson Pratt drain tube. The top tube section is what is stuck in your body (it's like almost 10 inches of tube in there) and then the rest just dangles out. The tubes are sutured to your skin. It's pretty gross. You have these plastic grenade things dangling at the bottom and they need to be emptied multiple times a day. Then you have to measure the "output". Again, thank God for my husband. The guy was a rock. 

7. Both of my surgeons were wonderful. They came to see me the next morning and were full of smiles and jokes and well wishes.

8. The nurses who took care of me were the best. They were kind and helpful and just plain wonderful. They even sent a "hope you're feeling better" card after I went home. How great is that?

I feel like I was one of the lucky ones in that I was able to get both of my drain tubes removed at the same time, after just one week. It can sometimes take up to 2 or 3 weeks, and not every woman gets both out simultaneously. My plastic surgeon and his nurse tag teamed it - they each snipped the sutures around the tubes and then 1...2...3... PULLED. Out the tubes came. Was it the worst thing in the world? Probably not. Did it feel like it at the time? A little bit.

So, week one after surgery, I just hung out at home trying not to laugh, cough, sneeze, or jerk in any way. Holy shitballs. You don't realize just how often you use your chest muscles and side muscles up through your armpits (they removed lymph nodes from up in my arm pits - they went through the incisions they made for the mastectomy and up into the 'pits). If you know someone who is going to have a mastectomy, tell them that it is smart to invest in button up shirts to wear for the first week or so. Trying to get in and out of a t-shirt just isn't gonna happen for a while.

Week two I met with my physical therapist, who is also a lymphedema specialist. She was able to make sure that I got my range of motion back, strength back, and monitor me for signs of lymphedema. She was also able to take care of any little cords that developed. (Imagine those little glow stick bracelets and how you  have to crinkle them to get 'em to glow - - she massages the cords that develop until they crinkle and snap and go away. Those cords are made up of hardened lymph fluid.) Again, if you know of someone who is going to have breast surgery, you might mention to them that they should get squared away with a physical therapist who is a lymphedema specialist. IT'S SO VERY VERY IMPORTANT.

By week three I was cleared to drive and the pain was mostly gone and my PT sessions had been going really well. I was wearing tshirts again and doing laundry and going stir crazy (read: too much Pinterest and YouTube.)

Now, I am leaving out quite a few gory details, but to be honest - you don't really want to know about those things.

I had surgery on September 9, 2015. I was back at work, full time, by October 5, 2015. This is all due to my amazing and fantastic doctors, my superman of a husband, and the love and support of my family and friends. I was definitely scared about surgery. I was scared about losing parts of my body. I was scared of the pain. I was scared of the drain tubes. I was scared of the scarring. But you know what. It's all okay. The surgery went great and while yes, they did take parts of my body, they only took the bad stuff. The parts that made me sick. Those surgeons left the good things. They left all of the parts and pieces that make up me. I still have my heart, my humor, and my ability to love.

It was about one month after my surgery when my physical therapist encouraged me to join her Making Strides Against Breast Cancer walk team. I was a bit tentative at first because I really didn't know anyone else on her team, but something about doing this walk felt right. In hindsight, raising money and awareness for breast cancer by participating in such an uplifting event was the perfect way to finish my fight (Thanks, Tracy!). It was pretty dang inspiring to thousands people the day of the walk supporting their survivors and hoping to make a difference. I gotta tell you, it felt really good to know that I was out there just one month after surgery, able to put on my own t-shirt, walking a full 5k, and laughing with my friends and family. It felt really good to know that I got through the scary and can call myself a survivor.

Tuesday, September 22, 2015

The one with another list of things to note

As I sit here recovering from my double mastectomy and reconstruction (I'll write about surgery later. I'm not ready yet) -- I've had some more time to sit and stew and reflect on a few more things. I know I've already put up a post where I talk about stuff I have learned, but this is just a little different.

I've thought about the things that everyone who finds out I have (correction: HAD) cancer asks: HOW CAN I HELP? WHAT CAN I DO? The answer is incredibly simple. Just be there. Be my friend. Be present. Be happy. Share with me the funny details and stressful situations in your life. Tell me about your day at work, vent to me about your crazy co-workers, all of those small little things add up to be just what I need - - your friendship. Now, this answer doesn't always go over very well with folks. Obviously I cannot, and will not, speak for everyone battling cancer. I am my own person and only know how this diagnosis has played out in my life. Just to be clear. So, with that in mind, I have made up a list of things that have helped me so far. Things that have encouraged me to keep a positive attitude, made me laugh, helped my family, and reminded me that I have done a fantastic job of surrounding myself with awesome people.

1. The "Chemo Advent" box.
A good friend of mine made this box and placed in it 20 different and individually wrapped up gifts. There was one for each week of chemotherapy. I opened up a new gift on each chemo day and it was such a lovely and happy thing on those craptacular days. There were things like chapstick, small candle holders, a nail file, stickers, googly eyes, and earrings. Such a great idea and most definitely brought me joy and chuckles.

This was the very last thing I opened. It's fantastic and currently resides on my bookshelf. 

2. GoFundMe campaign.
My youngest sister-in-law started a small GoFundMe for my family. I have good insurance and we have a comfortable savings so we aren't at risk of losing our house or anything. But the extra funds were definitely appreciated and seriously helpful. We used the money to pay for our portion of the cost of surgery to put in my port. (Thanks for my Sigourney Weaver port, guys!!) I don't think this is something that must be done for everyone, nor do I think everyone wants a GoFundMe for their stuff. Probably best to ask the person to see how they feel about it before you create one.

3. Cards and notes through good old fashioned mail.
Honestly, I love getting things in the mail that aren't bills. It makes my whole day. Even when folks live hours or states away, it is so lovely to get a short note from them. It's the equivalent of a long distance hug. (Plus, I like being able to send things to them in return.)

Look at how happy this card is! And stickers, too!

4. Social Media (#hatsforjenn or #hatsforjen - Google it. It was a thing.)
Honestly, social media has been kind of a lifesaver for me. It's been a way for me to stay connected to friends and family, especially on days/weeks when I didn't feel so hot and didn't want to leave my house. I found that folks would leave me encouraging notes, funny pictures, and send IM's checking in. It's not like a phone call where you feel obligated to answer or then feel like an ass because you ignored the call -- social media has been good to me. Personally, I use Facebook, Google Plus, and Pinterest. All for different crowds and purposes. There was a group of seriously wonderful folks on Google Plus who ended up starting a thing where folks would post pictures of themselves wearing all kinds of hats and used the hashtag #hatsforjenn (or #hatsforjen) to make me laugh and smile when I lost my hair. Words can't describe how cool that was.

I had my own hashtag!!

5. Staying away from WebMD.
This may not work for everyone, but I never ever ever went to WebMD or Googled anything pertaining to my diagnosis or side effects. If I had questions or concerns I simply called or emailed my doctor or nurses. I mean, I already knew I had cancer so I probably shouldn't have been scared about anything that might have come up through random internet searching - - but why risk freaking myself out, ya know?

6. Frozen meals, dinners, and gift cards.
To the folks who brought dinner, made ready-to-go frozen meals, and brought gift cards for food - - thank you x 1,000,000. These were perfect for the nights we just ran out of time and energy. When Ben would miss work to shuttle me to and from doc appointments, he had to make the most of his time while he was at the office. But when you figure me and my too pooped and feeling gross self into the equation, there were days I couldn't pull my own weight to make dinner, so he had to be home because someone had to feed the kid! These dinners saved us so much time, energy, and stress. It was one less ball to drop and allowed us to all be together as a family in one room, even it was just for 30 minutes while we ate. My aunt used this website called "Meal Train". I highly recommend it. You can set up a calendar for a family and it gives you a personalized URL. You can list things the family likes/dislikes or any allergies, and then you share the link. Friends and family are able to select the day and menu that works best for them so there are no double-ups or conflicts. Pretty snazzy.

7. Relay for Life luminaries.
I did not attend the local 2015 Relay for Life event. I was at the tail end of chemo and honestly, I didn't know for sure if I had beaten the cancer and didn't feel comfortable participating until I could call myself a survivor. Right or wrong, that is how I felt. But, a few folks purchased luminaries for me and it just about made me cry. What a wonderful reminder that I wasn't alone in this fight and that people were rooting for me. Oh, and the donation to the American Cancer Society is nothing to sneeze at either. It's not all about funding research- - it's also about funding local programs for folks dealing with cancer. Things like classes on how to style your wig and draw on eyebrows, things like paying for taxi services for folks to get to and from chemo. It's important stuff they are doing. (You can bet your ass I'll be participating in the 2016 Relay and I'll proudly wear my "SURVIVOR" shirt.)

It still makes me feel all the feels...Ugh...who is cutting onions in here? No one? Maybe it's dust. Yeah, dust. 

8. Journaling, blogging, and writing poems.
I know this one seems kinda like a gimme, but still. Taking the time to seriously process how I felt about the different stages of treatment helped to keep me on an even keel. By taking the time to put into words how things worked and the corresponding emotions was good for me and I hope by sharing some of what I wrote, it helped others gain a better understanding of what living with cancer can be like.

9. Reading.
Duh. Reading for me is the best way to get out of my own brainspace for a while. I don't know about you, but I definitely need some time to recharge and books are it for me. Honestly, I probably would have driven myself and my family crazy without my Nook.

10. Hanging out with friends.
Yeah, this is another obvious one, but it is still on the list of things that helped. Even when I lost my hair and felt a smidgen uncomfortable with my new look - it was great being around my friends. To hear about what they had going on, their successes, their struggles, and their jokes. Again, it was another way to remind myself that life was, and is, still going on. The world did not stop turning because I got The Cancer. People still need me, and I still need them.

11. Working.
Let me start by saying that I might have the best workplace in the history of work. My supervisor and colleagues have been so completely understanding and supportive. Through the grace of a good sick leave policy and technology, I was able to continue working through all 20 weeks of chemo and after. I have not had one unpaid day of leave and on days when I couldn't get to the office due to appointments, nausea, or compromised immune system - I was able to work from home. Continuing to work was yet another thing that helped remind me that the world is still spinning and things still need to get done and that I was/am bigger than a diagnosis.

12. Music. Singing, dancing, and learning to play my uke.
Okay, yes, this is yet another obvious one. But, I don't care. It stays on the list. For me, music is a kind of medicine - it could be meaningful lyrics, it could be a catchy clap-track, it could be a gnarly bass line - there is always something about music that leaves me feeling satisfied. Sometimes I like to dance to it, sometimes I like to sing along with it, and sometimes I like to figure out how to make my own. Music helped/helps.

I am sure there are other things that helped - small tokens of friendship and words of encouragement - but some of those things I just want to keep to myself because they are precious (hopefully you've received a personal thank you from me by now). These are the big ones. The constants. The things that I kept coming back to in order to keep going. To keep being Jenn the mom, wife, daughter, sister, friend, and all of the working, cleaning, talking, driving, shopping, dancing, cooking, and laughing that goes along with it.

I said it before and I will say it again - I am just me and I can't (won't) speak for everyone dealing with cancer. So, god forbid that you should ever know anyone else who has to go through the different stages of a cancer diagnosis, now you know some things that help. You helped. And you, and you, and yes you over there. You all helped. Thank you.

Friday, August 21, 2015

The one where I look back on chemo

I have officially been done with chemo for an entire month (...and then some). I cannot express to you just how good it feels - and how good it feels to say that. Done. I'm done with chemo. (!!!!!) It was crazy how much better I felt within the first week - my appetite came back, my energy was up, and each day was better than the one before. By the time I was a month out my taste buds had returned from the abyss and I finally started feeling human again.

Just a few days ago I looked in the bathroom mirror before getting into the shower and thought, "holy shit, Jenn! Where did you get those bruises on your forehead!?!" But you know what? They weren't bruises at all - - THOSE SPOTS ARE MY EYEBROWS GROWING BACK!! Oh, and my eyelashes? They're coming back, too. Admittedly, it's a little itchy and a little pokey and I'm blinking in double time at everyone, but it is worth it. These are all good things. I swear to God, I will never bitch about shaving my legs and armpits ever again. The only remaining ailment as of right now is some lingering stiffness in my muscles. They are all super tight. I went from running 2-3 miles a day and playing tennis 3 times a week to absolutely no real physical activity for 5 months. I lost almost all of my flexibility. Grrr... Oh well. There could be worse things. I'm doing some basic and easy yoga poses and stretches each night before bed. Eventually I'll start walking regularly (when it isn't an oven outside) and work my way back up to running. Slow and steady is tough for me because I am impatient and I'm mad that I have to start from scratch. It's tough to remind myself that I just went through 20 weeks of routinely poisoning my body with some potent chemicals. It's tough to cut myself some slack. Definitely frustrating. But I'll get there. Eventually my irrational heart will catch up with my logical brain and I'll be fine.

So. Now that I've had some time away from chemotherapy, I can walk you guys through it with honesty and perspective.

Here we go:

Here I am. First chemo. February 17, 2015.
This is me sitting in the chemo chair for the very first time. Those are big fancy leather recliners with cup holders. You get whatever you want to drink and a warm blanket. The nurses in the infusion room are fantastic. They are smart, organized, professional, funny, caring, and attentive. I loved each and every nurse who assisted me through all of my treatment days. It seems important to show you guys that getting chemo isn't always like they portray it on TV or in the movies. I never went to the hospital or had to wear a gown. There were about 15 of these chairs in a huge room with TVs, a soda machine, and a snack basket. There were lots of windows and high ceilings. I mean, for a place where they do nothing but pump super toxic meds into your system - - it was pretty nice.

The "Red Devil"
One of four kinds of chemo I received is called Adriamycin, or "The Red Devil". It's some pretty nasty stuff. It's so nasty that my pregnant nurse was not allowed to give it to me - she had to have another nurse do that portion for her. They administer it directly (no saline mixer) over the course of a few minutes. You eat ice chips the entire time because the cold of the chips shrinks the blood vessels in your mouth, which decreases the amount of chemo flowing there, and this helps prevent mouth sores. It works - - I never had a single sore in my mouth.

I preferred popsicles over ice chips - - but that's just me. 
After my second dose of chemo, my hair started falling out. At first it was just a few strands here and there, then after a day or so it was coming out in bigger clumps, and before I knew it I couldn't even run my fingers through my hair without giant hunks coming out. It was time. Ben was a champ and shaved my head. (You can read all about that particular experience here.)

Some of the first hairs to leave my head. 
Being bald wasn't (and still isn't) so bad. But, nobody wants to be bald all by themselves. Ben already has a shaved head (who doesn't love having the same haircut as their husband?) which was nice, but then one of my brothers decided to join the 'no hair, no cares' gang. I only asked him about 5 million times if he was sure he wanted to voluntarily shave off his luscious cowboy locks, and he seemed pretty confident that this was the move he wanted to make. So, I did what any big sister would do - - I gleefully turned on the shears and shaved him bald. (...after giving him a mullet, of course.) Talk about a grand gesture of solidarity. I have good brothers.

My bald buddy, Haydon. (Our baby brother got a pass since he had prom. Nobody wants to be bald in prom pictures.)  ;o) 

Here is how my chemo regimen worked: For the first 8 weeks I did treatment every other week. On dose days I received two kinds of chemo. For the second 12 weeks I did treatment with one kind of chemo every single week, and a second kind of chemo every third week. It was exhausting. The first half was filled with nausea and being physically wiped out. I had three different kinds of anti-nausea meds (thank goodness) and a very understanding and patient work place who let me remote in and work from the comfort of my couch. Continuing to work throughout chemo was very important to me. It allowed me to get outside of my own head and worry about other stuff for a while. It helped remind me that life was still going on outside of my cancer diagnosis.

I had to go to the cancer center each week, sometimes multiple times a week, to check my blood levels. They monitored the levels of my hemoglobin, hematocrit, white blood cells, red blood cells, and neutrophils. If I started dropping too low I would get a shot in the back of my arm. This shot would stimulate my bone marrow and force it to produce the good stuff my body needed. As you might imagine, forcing your bones to produce marrow effing hurts!! Believe it or not, Claritin saved me. Because it is a histamine blocker, it significantly reduced those painful side effects. The second 10 weeks was no nausea (thank goodness) but bone and joint pain with continued fatigue. Also, by this time I was so deep into chemo treatments that it started to mess with my taste buds and fingernails. Your fingernails grows in the same way that your hair does -- so if the chemo is making your hair fall out, there is a chance your nails might fall off. Luckily for me I just had these white marks, almost like tree rings, on my nails. (Which is definitely better than having no nails.)

During this second half of chemo I got my ass handed to me. So much so I ended up in the hospital twice getting blood transfusions. At one point I was operating as if I were 3 units of blood low. For me, those blood transfusions were way worse than chemo. I have an aversion to large quantities of blood so we'll just call those two transfusion episodes "mildly stressful". Did you know that it can take almost 7 hours for a blood transfusion? Figure about an hour to match and cross your blood type. Another hour to get the blood to the hospital. An hour to drip one bag of platelets into your body. 2-2.5 hours per bag of blood (I needed 2). Then about 30 minutes to wrap it all up and get out of there. Ugh. Thank goodness for Criminal Minds marathons on TV and my Nook. But again, I had the best nurses who took such fantastic care of me. And by some crazy serendipitous luck, I had the same nurses for both transfusions. Loved them. One of those nurses just so happened to be a breast cancer survivor and she told me to take B-12 vitamins - - she said it would help boost my energy and possibly help keep my fingernails from falling off. She also mentioned rubbing coconut oil on your nails every day. I did both of those things. Who knows if that is the reason why my nails stayed put, but they did. 

Ugh. Here's where it's gonna be tough for me.

Losing the hair on my head was manageable. I really feel like I handled that pretty dang well. But, for some reason, when I lost my eyelashes and eyebrows and nose hairs - - it got tough. We are mammals. We are meant to have hair. It is absolutely amazing to me how completely different you look with no hair at all. I felt like an odd combination of Lex Luthor and a baby bird. Possibly like the little alien guy from the movie "Mac and Me". (Don't know that reference? Google it. Worth the chuckle.) I like to think that I am not a terribly vain person, but it was difficult to look at myself in the mirror and see this hairless stranger staring back. I just wanted to see my long brown hair. I wanted to see my expressive eyebrows. I wanted to see who I was before the cancer. It took me a while to realize that I am never going to see that person in the mirror. Even when my hair comes back, I will never see the person I was before the cancer. I'm just a different person and that is not a bad thing. That small realization made the biggest difference.

Some women are comfortable going out and about with no wigs and no makeup and I am so envious of their strength and courage. I am not one of those women. I was nervous and apprehensive about wearing my wig at first, but it definitely started to become a security blanket for me. Same goes for drawing on my eyebrows (Thank you Rimmel Professional Eyebrow Pencils!). Throughout the entire 20 weeks of chemo, there were only two days where I couldn't bring myself to get up, get showered, dressed, and dolled up. Just two. For me, the routine of getting up and showered and choosing an outfit and putting on makeup helped me feel like I was normal. There really is something to be said for the adage that "when you look good, you feel good"...and when you feel good, things just don't seem quite so terrible. I should tell you how helpful my 11 year old daughter was in this portion of the adventure. She did some research for me on how to draw on eyebrows. I bet that kid watched no less than 50 YouTube videos on this particular topic, and I was glad for any and all pointers. Eyebrows done right look great. Eyebrows even just a little wrong look terrifying. Her advice? Remember that eyebrows are sisters - - not twins. They don't have to match perfectly. I also learned that you can swipe a bit of baby powder along your brow bone before you start drawing your eyebrows and by some kind of wizardry, the powder helps to create a textured look and seems to help reduce smudging and/or melting. (Thanks for that tip, Aunt Sara!)

This is me. This is as real and naked and honest as I can humanly get. 

And this is me 25 minutes later. Pretty amazing what makeup and decent wig can do, eh?

Another crazy thing? One of the kinds of chemo I received, Taxol, has extracts of a yew tree. Because of this, some folks have a severe allergic reaction and can go into anaphylactic shock. So, each time you receive this treatment you get a healthy dose of Benadryl. That's right. Benadryl right through your port. Now, you should know that I can barely handle the tiny little pink pills of Benadryl without immediately taking a nap - - so when this was administered right into my bloodstream it was like a horse tranquilizer! My belly got all warm and my head got all floaty. It significantly reduced my anxiety on chemo days, that's for sure. I remember bringing a magazine to read and holding it in my lap while they were giving me my pre-meds. The nursed pushed my Benadryl and I just sat there staring at the wall...still holding my magazine. I never read the damned thing, just sat there stoned out of my gourd holding the magazine until Ben physically removed it from my hands. Derp. I guess I shouldn't complain too much. Whenever I'd get home from chemo, I'd be so spaced out in a Benadryl haze that I would just fall asleep for hours at a time. Which is better than feeling like crap. Silver lining, right?

Is it gin? Is it chemo? WHO KNOWS!! One way or the other, it is most definitely a potent cocktail. 

And now we get to the good part. After 20 weeks...13 chemo sessions...2 blood transfusions...countless blood draws...and numerous days of feeling like yuck, dipped in ick, frosted with was over. For my last day of treatment we made about 8 dozen cookies and brought them to the cancer center for the receptionists, appointment schedulers, doctors, nurses, and pharmacists. I made snazzy braided bracelets for all of the nursing staff and gave everyone hugs whether they wanted them or not.
And here I am on the last day of chemo. July 9, 2015. Yes, I am wearing yet another v-neck shirt. Made it easier for the nurses to access my port. 
It was the strangest feeling to be so dang excited to get treatment. To be overjoyed at knowing you're gonna feel pretty shitty is definitely odd - but that's how I felt. Knowing it was the very last one made it so much easier. That and the Benadryl. There were two awesome things that happened this day. The first was when my nurse said, "You are a great person. A perfect patient. You are strong and wonderful and am I so excited to never see you again." I felt the same way. Those nurses were awesome, but I am so glad I haven't seen them in a while. The second great thing was coming home to this:
Look at how happy my house was!! 

Yes. Those are puns on my front door. Because I have some of the best friends in the world. 

If you read the fine print on this poster it says, "Mother effing cancer better ask somebody." 

Those are the highlights (the low-lights?). There is still plenty to come, but knowing that I completed chemo is a huge check on the to-do list. Oh, and I got the results back from my post-chemo ultrasound, mammogram, and PET scan. The scans all showed "no discernible masses". We kicked those tumor-twins asses. It worked.

Guys, I want to share all of these sordid details with you not to freak you out or fish for sympathy. I just want  you all to see what it's like to go through this process. It is more than just a single terrifying diagnosis. It is an event that changes lives in every possible way - mentally, emotionally, and physically. The scars are visible and hidden. Please, please, please make sure you are talking to your doctor, doing self exams, and asking questions. Be informed about your family history and talk about the scary things, even if you don't want to. You know what's worse than an awkward conversation? Chemo. Trust me.

So now what. Now I take a few weeks to do nothing, then surgery and (more than likely) radiation. But it's okay. I have great doctors and great friends and great family. Of course I'm nervous/scared/anxious, but more than that I'm still just me. Albeit a me with a little less hair than usual...but still me.

The kid picked this shirt out for me. She's wonderful. 

Sunday, May 3, 2015

The one where I list things I've learned so far...

I'm just over halfway through chemo and it seems high time to list the things I've learned so far:

1. Appreciate your nose hairs. Seriously. I didn't think about it until I didn't have any. Stuff just rolls right out and if you aren't prepared with kleenex, you will turn into a preschooler wiping your snot with your sleeve.

2. Don't fight the fuzzy head. Being bald has taught me more about self-confidence in two months than all the years after puberty combined. I can still be funny and smart and adorable without hair. This doesn't mean I don't miss my ponytails - - but I don't NEED them to feel complete.
A good friend let me borrow this chef hat. Of course I did my best Swedish Chef impression. 

3. BE APPRECIATIVE OF YOUR NURSES AND LAB STAFF!! Take them donuts. Tell them thank you. Be nice and smile. These folks are amazing and selfless and wonderful and lots of other adjectives. Seriously, they hardly know you and yet they immediately care so much. How great is that?

4. Good friends and family are so damned important. They keep you grounded and surrounded and feeling loved and supported. They make you food and make you laugh and make you remember that you are strong and capable - - even when you don't think you are.

5. Don't let the bad thing(s) define you. I am more than two tumors. Life is continuing to happen all around me. I cannot forget, and will not forget, that my friends still need support in their endeavors, my daughter still needs "gentle reminders" to practice her guitar, my husband still needs to vent about crappy days at work, my brothers still need their big sister to cheer them on, and I still have responsibilities at work. I still love listening to music and dancing around the house. I still love yelling at sporting events on my TV. Cancer is a thing that is happening in my world, but it is not my entire world.

6. Perspective. PerspectivePerspective. Things might be bad but they can almost always be worse. Do not forget that. Fight your fight and know that there are others out there fighting a bigger one.
See what I mean? Things can always be worse. 

7. Running pants (and yoga pants) are "real" pants. I used to be sorta judge-y about this but they are currently in my regular rotation. Because they are comfy and if I happen to fall asleep in them, they double nicely as pajamas. Some days we're all lucky I'm wearing pants, period. Ain't got time to worry about if they are stretchy or not.

I know there's more to this list, but I think these are most of the big ones. Cancer has changed me and will continue to change me. Not just physically, but also emotionally. It will continue to change me, and not always in an unpleasant way. I've been so lucky to be a recipient of an enormous amount of light and love from so many folks - - it's my great pleasure to try and give that back in as many ways as I can.

Sunday, March 29, 2015

The one where I can actually compare myself to Angelina Jolie

Remember a few years ago when the interwebs were in an uproar when they found out that Angelina Jolie had a preventative double-mastectomy? And how they erupted again recently when they found out she had her ovaries and Fallopian tubes removes? Seriously, there was even a Buzzfeed article about it. (You know it's a hot topic when Buzzfeed covers it -

As you might have heard, Angelina Jolie carries the BRCA1 gene. So do I. Because of this genetic marker we are predisposed to getting breast cancer at early ages and it reoccurring later on as ovarian cancer. (Guys, this is the one and only time in my life where I will legitimately be able to compare myself to Angelina so I'm going to go ahead and do that. Because I can. Finally.)


A few people have asked me how I feel about Ms. Jolie's op-ed pieces discussing her very personal and monumental life choices. Have I read the articles? Do they bother me? And so on...

I have read the pieces. No, they do not bother me. Honestly, I am so pleased that each time she has had a major procedure related to her BRCA1 genes, she has made sure that the public is informed of her "why". Women need to know about these things to be better informed and to have appropriate conversations with their doctors. She has the fame and the power to make these things newsworthy. Her voice is a much more powerful vehicle than mine. I can tell all of my friends and family about breast self exams and talking with their doctors -- but she can capture the attention of a nation. Good for her for recognizing that and doing something about it.

For some folks I'm sure it seems extreme to have a double-mastectomy followed by having your ovaries and Fallopian tubes removed as preventative measures. I mean, a double-mastectomy is an amputation which is a big deal. (Just because it's not an arm or a leg, doesn't mean it's not an amputation.) Removing your ovaries means no more babies and bringing on menopause. A BIG DEAL. A big deal based on statistics. A chance that you test positive for the BRCA1 gene. Then more percentages about your likelihood of getting breast cancer. Then even more statistics about the likelihood of the cancer reoccurring in your ovaries. But remember, we're talking about cancer. How comfortable would you be gambling on CANCER? I gambled in my 20's and lost.

The difference between Angelina Jolie and myself (as if there was just one) is that she has the financial freedom to make these decisions with, I'm guessing, no real monetary repercussions. I knew the same facts as her and did not make the same decisions. I knew that I could test positive for the BRCA1 gene, but in my early 20's with a young family, couldn't justify the cost of the genetic testing. (If your insurance doesn't cover the cost, just plan on paying an amount that could get up to $4,000.) I couldn't justify the time off work or the cost of a double-mastectomy and the reconstructive surgery that would follow. Unfortunately, the harsh reality for most women in this situation is that money is a factor in their decision-making.

Also, I need to be honest here and tell you that there's more to the story than money. I couldn't handle losing parts of my body on a chance. It scared me. I thought I would be less of a woman. Less me. Right, wrong, or somewhere in between - I made the decision to wait and see what happened. I gambled on the odds falling in my favor and it didn't quite work out the way I hoped. The lesson I learned here is that I will still never judge a woman's decision because it's her call and I can clearly understand both sides of that coin. Probably more clearly than most.

So what does all of this mean? What is the point of this post? The point is - - ladies need to be aware of their family medical history. They need to be informed. They need to have difficult conversations with their doctors. They need to do self exams regularly. No matter what decision they make - - they simply need to be aware. Thanks to our fascination with famous folks, woman like Angelina Jolie can bring these conversations to the masses and can get websites like Buzzfeed (who appeal to a younger demographic) posting information about BRCA1 genes.

Also, did you really think I would post without my standard #CheckYourself message? Next time you go to the doctor, see if they have these available. Take one home. Use it.


Sunday, March 8, 2015

The one with/out the hair.

So, I  finished chemo round #2 and this is the part where my hair goes buh-bye.

I was ready, mostly. I couldn't even touch my head without the hair falling out. Basically, shedding like a golden retriever. Now, I had previously purchased two beanie/stocking hat things, some bandannas, and a wig in preparation for this. The wig is something that I have yet to fully embrace but have it like a security blanket. Who knows, maybe I'll never wear it. Maybe I'll wear it everyday. I think I need to figure out if covering my bald head is more for me, or more for the people around me. I feel mostly okay with my new look, but will it eventually freak out my neighbors? I dunno. As of right now, I cannot stop thinking about the possibility of losing my eyelashes. How in the hell am I going to put on eyeliner without blinding myself? I use my eyelashes as a guideline and guardrail to avoid that! Ugh. And drawing on eyebrows? I do not know how to do that, and if you do it wrong, it doesn't just look "off" it looks horrifying. Oh well. We'll worry about that when and if. When and if, folks.

At any rate, on Thursday night around 8:30 p.m. I just up and decided that it was time to shave my head. The hair wasn't going to stop falling out and I couldn't handle the shedding any more. Believe it or not, the hair falling out made me more self-conscious than the idea of being bald.

You can see here where my hair is just gone. 

Why wouldn't we take an awkward photo mid-shave? I look a little like Roger Klotz from "Doug" in this photo. Google it if you don't know what I'm talking about. It's funny, I promise. 

Here's the hubs shaving my head. Now we have the same haircut. 

First look in the mirror. 

Sounds odd, but this is a face of relief. So stressful to constantly worry about your hair falling out in big ol' chunks.

Well, now that the hard part is done, I ordered some new earrings since my ears are on full display and I've been looking online at different eye makeup styles. I mean, might as well make the most of the situation, right? It's not so bad. One less thing to worry about and it certainly saves time in the shower. (...and now I know that I don't have any weird bumps or dents in my head. Yup. I've got a good shaped dome.)

...and one with a fancy chapeau. 
So yeah. That's what's new.