Hair-shaving Party!!!

     So, true to cancer forum predictions, my hair started to fall out around day 14 after treatment.

At the hospital for an echo-cardiogram,
day 15 after treatment.

Truthfully, my first experience with the hair loss was the evening of day 13. I reached up and tested my hair, and painlessly came away with a pinch of 12-15 hairs. Yikes! I giggled nervously as I showed my husband and sprinkled them on the carpet. My expected response of tears was suddenly forestalled when my three-year-old reached over, grabbed twice as much hair than I had just pulled out of my head, and laughed maniacally as she sprinkled it in my upturned face. I was trying to see how much she grabbed when she let it go and it was all over me! She honestly thought it was hilarious that mommy's hair was coming out! We went to bed, and I was relieved when my pillow wasn't covered in hair the next morning. However, three different times during the next day, if I was distracted by homework (or Facebook or whatever,) baby girl would reach over and yank out another handful of hair! I tried to get mad at her, honestly I did, but she laughed and giggled each and every time she did it. Stinking-cute spoiled little angel.

     By Saturday (day 16) morning I started seeing the damage on my pillow. By the afternoon I decided I'd had enough of the mess, and I scheduled a head-shaving party by texting a few friends and my family. Sunday I showed off my nifty trick to some kids at church in Primary. Some of them appreciated it, one of them did NOT. Oh boy, sorry honey!
     After church, I took a nap in the backyard so the kids would play outside. It was so nice to curl up in two cancer quilts in the sun! When I woke up, I asked my five-year-old son if he wanted to try and pull some of mommy's hair out, because we were an hour away from the party, so why not?

     To my surprise, his handful was MUCH larger than his sister's, and I knew he'd left me with a pretty decent bald spot in the middle of my mohawk! We chased around the yard for awhile, he kept trying to get another handful, and I kept tickling him.

     By 4:00 we were at Relik Salon in Orem where my sister-in-law, Nateal, works. We brought cheese squares, crackers, a veggie tray, and brownies. We waited the customary fifteen minutes or so for everyone to arrive, and then I gave anybody who wanted a chance to pull some of my hair out. Yes, kind of creepy. But in that fascinating way. Then Nateal taught my children how to use the clippers, and if they wanted to, they gave them a try on my head. Shane took a middle stripe out of my mohawk, and if I hadn't been laughing so hard I would have cried! It didn't take long once the clippers were safely back in Nateal's experienced hands. The hair loss looked pretty funny up close, I'm not sure if anyone got a picture that showed how funny the little lines and spots of baldness looked.

Unfortunately, my nephew was not thrilled
about joining the head-shaving. 

     Pretty soon, my brother's head was shaved, my twin sisters' panels done, my brother-in-law's, my other brother, my nephew... the hair just kept hitting the floor.

     When it was my dad's turn, they told me I should be the one to cut his hair. That's when I finally cried. I didn't want anyone to cut their hair, but they all wanted to show support for me. My dad has cancer, but won't need chemo. There was something just really sad to me about cutting his hair off for my cancer.

     Anyway, then Nateal had a panel, courtesy of her husband (she trusted him with the clippers?!), and my baby girl came up to me and said "Mommy, I want a haircut, too!" "Really? You want just a little cut off?" "No! I want it like this..." and she motioned and indicated my head. "No, honey, we are not shaving all your hair off."

     She wandered off for a bit and came back later. "Please Mommy? I won't even cry. I promise!" She is super animated when she talks, and uses excellent hand motions and all. I caved in and let her get hers done like her Aunts'. I cried a little then, too.

     Another sister-in-law took the chair, and two hours after we started we were finally done and ready to take pictures of all the baldies - including the little niece who just has barely any hair because she's a tow-headed little blondie.

     In all, twelve of us had something shaved.

I had two dear friends in attendance. One wore a scarf in her hair in a show of support, and the other brought me a bag of M&Ms with a super cute poem. Three additional family members and friends who don't live near us sent me pictures of their head-shaving, as well. It was quite the party, one I don't think any of us will ever forget.
     Another friend shared this quote from The Velveteen Rabbit, and I just had to steal it for the occasion:

     He said, "You become. It takes a long time. That's why it doesn't happen to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

     If I wasn't Real before, cancer is the sure-fire way to make it happen. I am surprised at how little my baldness bothers me. I don't mind covering my head in public to make others more comfortable (and it is a lot warmer) but you may also spot me happily bare-headed in the grocery store, or cheerfully explaining my hair loss to a child. I also have no reservations about posting pics online. Baldness has always strangely fascinated me, so if you share in that fascination please forgive my grainy pictures. I'm sure my sister will take some fantastic ones for me soon.

The day after.

I figured about 40% of it was gone.

2 days after

Can you tell I sat out in the sun for 15 minutes with suntan oil on my head?
I plan on swimming with the kids this summer. I don't want to accidentally get a sunburn, so I'm going to slowly expose my scalp to the sun each day. 

Can you imagine if I hadn't cut it and just let this much... come out? 

The patchiness is normal, and it's why most people choose to cover their head.
The Dr. told me not to "Bic it", since your scalp is sensitive,
and one mis-swipe and you've opened yourself up for an infection.

     I'm so grateful for my support network. I can't even thank everyone who has made a difference, because it would be in the hundreds. People are constantly checking in on me, asking how they can help, opening up with me, sharing their feelings and love, sending me gifts, making me laugh, and saving my life. Do you really wonder why I'm so happy when I've been constantly surrounded with, buoyed up by, and inundated with love? I love you all, too! <3

Removal of my purple Lego (Portacath Removal)

     Here I sit in the hospital again. Unscheduled. AND I missed school! GRRR!

So my port got infected. Who knows how! It happens to all surgeons eventually, but it hadn't happened to one of my surgeon's patients in so long, she was super disappointed. I tried to reassure her - "Hey, if it's going to happen to someone, it might as well happen to your most positive patient, right?!" I got her to agree, but not cheer up. :( Just to be clear, while blood infections are somewhat common, pocket infections like mine are extremely rare (like 5%), and they don't always know why they occur.

     Anyway, as I had previously posted, my port placement went really, really well. So almost a week later when it started appearing irritated and causing me pain, I was surprised. It just kept getting worse. I saw the plastic surgeon on Tuesday to get my expanders filled - but there was no way they were going near the site of my port with a needle. He took a picture and sent it right over to Dr. T. We were in touch with her office, with a list of symptoms to watch for as I headed home with a prescription for antibiotics. 

     On Thursday I had my Nadir appointment (to check how my body responded to the chemo, it's the low point of my immune system), and Dr. C - my oncologist's partner - examined it and said the same things: we don't know if it's an infection, it sure looks irritated, watch for any sign of fever, etc. 

     I found myself popping more and more pain pills, and getting less and less sleep. By Sunday evening we were pretty certain there was a problem, but since I still wasn't running any fevers, we knew I could wait until Monday morning to contact the Doc. This proved harder (and easier) than I had thought - I could not sleep due to the pain I was in, and finally, FINALLY crashed around 7 in the morning with plans to wake up and call Doctor T's office at 9. 

From Friday night to Monday morning

     I'm so glad that the nurse called and woke me up to check on how I was doing at 9:30! I told her (groggily) that things were definitely worse. She gave me a phone number to text a picture to Dr. T, who was in surgery all day. During class, I received phone calls from both the nurse and the hospital to schedule surgery to remove the port, and by 5:00 we were at the hospital. It turns out it was a good thing I got a late start to my day because I hadn't had lunch, and they were able to put me under anesthesia by 6:00 to remove it. Last night was a bit rough as they pumped me with IV antibiotics and the pain subsided through the night, but I'm feeling a LOT better all ready. Dr. T will come by in a couple of hours to repack my site, and hopefully I'll be home in time for class tonight! I found this really awesome site for more information about these kinds of infections - http://www.ncbi.nlm.nih.gov/books/NBK7008/

Notice how much less irritated my
skin is about 20 hours after surgery.

Dr. T. changing my wound dressing. 

    It's been a few more days since I wrote this. We have to re-pack my wound every day, and it hurts! Things have been going a little better, although my body finally let me know it needed some serious rest today. I am going to bed early. I delayed my post so I could add some more pics from the hospital. Thanks to my mom for using a dry-erase marker... I am STILL wearing the lines!

Dr. Tittensor and I sans beauty supplies. She humored me despite a LONG day of surgery. :)

     My brother-in-law came to visit me the morning after my surgery. He works in the hospital, so he stopped in after change of shift. He's been going through some tough times. Poor guy ended up with a lecture from me. I can't help but feel like the conversation was engineered by grand design. So, to Craig - if all of the pain from the infection and surgery were designed so that we could talk: IT WAS WORTH IT. YOU are worth it. Don't give up on yourself. You are stronger than you think, but it has to be YOUR choice. 

     There I go, lecturing again. I just love him, and want him to be happy. Life doesn't always turn out the way we think it will, but there is a point to all of it. Yes, life hurts. Yes, sometimes it feels like we have been betrayed when God takes us on a path that will refine us. Don't lose track of the big picture! Mortality can blind us! I've been promised that if I will read the scriptures, I will be able to see the big picture and keep it in mind. It makes a world of difference in how I handle trials. I pray that Craig will be able to find the healing he so desperately needs. His wounds are deep, but the atonement is deeper. There's a reason Christ is referred to as the master physician.
    

Portacath, First Chemo treatment

Bard Power Port
My purple Lego

     "How are your veins?" I hate this question! My veins are a combination of responses! They can be great. I can be an easy stick. My veins can also roll, They tend to be shallow. They infiltrate. They hold firm. They bruise. They get irritated. So when the oncologist  asked with reference toward my impending chemo, I was grateful for my husband's presence. He had no problem telling the Doctor that my veins have given me a lot of trouble at times, but not always. Dr. R. reviewed my chart, and stated "Well, you've had a double mastectomy, and most of the time when we deal with those, we usually recommend a port anyway. How would you feel about a port?" No digging for my veins? No risk of infiltration (when the medicine ends up in your arm instead of in your vein)? "Sign me up!"
     When I spoke with my General Surgeon again, she showed me the port that would be placed under my skin, and explained a little about the procedure. "What kind of recovery will I be looking at?" I asked. "Nothing compared to what you've already been through!" She happily replied. But I was like, "What?! It can be in the same sentence, though?!" Yikes. I have class the week of my port placement. I want to go to class. I need to go to class. We went home from that appointment, and a week or so passed. My husband's mom contacted me inquiring about the port placement. "Are you sure you want to get it the day before you start chemotherapy? My niece's port has been painful and uncomfortable. She says it's taken days to ignore the pain from it..."

See those cool palpation points? That makes the port like a lego brick.
Yup. I have a purple Lego under my skin.

     Yikes. I thought this was no big deal! Like, it's just a catheter like an IV being place inside your body with this little triangle, no biggie, right? So I got online on the cancer forums and started reading about port placements. SIGH. GROAN. I read about horror story after horror story. Most people get their port at the same time as another procedure, so they don't know how much pain was due to the one or the other. Many are on the forum with the explicit purpose of stating how terrible their pain is, and nobody warned them, and has anyone else experienced shooting pains up their necks three days later that can't be controlled with medicine and leaves them in tears and I HAVE SCHOOL TO ATTEND!!! LOL!
     But the placement is scheduled, and quickly approaching, and there is no better date to insert this device into my body, so I attend an earlier section of one of my classes on Wednesday, and we head to the hospital. The doctor is a little behind, so after being confined in the pre-op room with my hubby (who likes to torture me by offering me food and drinks that he knows I cannot have) for more than an hour I am more than ready for the procedure to start.

Since operating rooms make me want to dance,
I wonder if I missed my calling in life? ;)

     I wake up in the recovery room and there are some of the same nurses from the last time I was in this room. Yeah! Let's party! "Hey, do you remember me?" I ask, because people sometimes don't anymore with the punk haircut. "I think I do," says one nurse, "I seem to remember dancing with you the last time you were here." "Yup, that's me, you guys should be dancing. Wouldn't life be better if we all took a little time to dance at work?" Yeah. I'm telling you, anesthesia makes me a party in a hospital gown. I didn't take ONE SINGLE LORTAB for my port placement. I went to class, came home, went to bed, got up, went to chemo, came home, went to class, went to bed, etc.... My portacath has been relatively painless. Thank goodness for the small favors, huh? Spoiler, I didn't publish this post and have re-evaluated my recovery.

Chemotherapy - the ultimate depilatory
Yeah, and don't even get me started on what the... why
this... picture is so crazy wrong. Hair removal and
flowers and near nudity and floating in sunsets. GAG.

     So Thursday we drop the kids off at various sitters houses, and head off for the hospital again. As the medial assistant leads me back through the suites I say to her "So, I understand you're here to offer me the most expensive depilatory on the market." She stumbles for a minute and says "...yes, chemo is very expensive..." with that kind of question in her voice that wonders if she's responding correctly. I suppress a sigh. I had hoped we'd start off the day with some laughter! Since my chemo was the very next day after port placement, the surgeon left the needle in for the chemo nurses. Yay! It takes awhile before they begin my treatment, and three different people ask me "Are you ready?" To which I reply or imagine replying things like "Hook me up!" "Let's do it!" "Let's get the ball rolling!" "No, I'm here and ready to go, and am now going to lecture you all about why chemo is a bad idea for treating my breast cancer..." I'm sure if I had more sarcasm in my body it could have come pouring out to great effect. Unfortunately, sarcasm usually occurs to me after a situation has concluded. I would be way funnier in real life if I had sarcastic bones in my body. Maybe. I can dream, right?!

   The pre-drugs (anti-emetic and steroid) are no big deal. The first chemo drug makes me queasy. The second makes me uneasy. We don't have to stop my treatment once. I ask my husband for a coke, and for crackers or nuts during the treatments to help with the nausea. I had brought a coconut water with me, which I mixed with the Coke. This seems like it should cause lightning strikes due to the sheer monstrosity of my blasphemy, but hey, I'm getting poisoned by medical professionals, so I guess it all works out somehow. By the time the kids are going to be getting home from school, we are done and on our way home. Just like the nurse said, the best way to describe how the chemo feels is not very easy to communicate. I feel a little "off" or "uneasy".

     I feel uncomfortable inside. I feel tired. The queasiness isn't quite like morning sickness. It sits higher in my digestive tract. It's lighter than morning sickness as well. I suspect by my next treatment that will be less true. I took some compazine in the afternoon to ease the queasiness, and dragged my mom out walking with me because the nausea subsides as I walk. I slept fine the first night, but only after I took a lorazepam the Doc and given me. I was up with my littlest on the couch watching a show and eating lemon drops one moment, and collecting my drool in my hand and dragging her to bed the next! Yuck! LOL, but by the next morning I was doing pretty well again. I took another compazine, and we were off and running for the entire day. I went to bed the next night around 10:00 pm or so, and woke up at 3:00 pm the next afternoon! I could tell I'd slept in, but honestly, I expected it to be ten or eleven in the morning when I got up. It was rather unsettling to sleep that long and not realize that I had been so out of it for so long. Thank goodness with it being Saturday my parents and sister and daughter all took turns taking care of the kids!
     Since then, my days (and especially nights) have been rather yucky. Like, stay near the bathroom yucky that ain't no one, no how, ever gonna' read about that kind of yucky, yucky. Not fun.
     I was supposed to get my expanders filled today, but even my mom didn't like the way my port looked this morning. By the time I saw Dr. J's Nurse Practitioner she said "I don't think we want to get anywhere near that thing with a needle right now." It's been hurting, too! Grr. I was so okay with not taking any pain control for the port placement, but here I am, nearly a week post-op, and I took one tonight.

I have to leave the steri-strips on until they fall off. Notice how the skin around
my port looks angry at me? And you can see the redness as it extends up the
catheter. What I don't have a clue about are all the red spots. They must be like
"We're mad, too, cause the purple Lego should have been rainbow colors.

     We're not certain it's infected, in fact, we're rather assuming it's not infected, but just to be on the safe side I'm on antibiotics. Funny, I had noticed it was getting more and more tender each day rather than less painful, but the general yuckiness of the chemo convinced me not to get too concerned. Let's hope tomorrow will find my skin looking less bruised, angry, or whatever the heck it is trying to communicate. We'll go for calm. Calm skin. And maybe some yoga... I haven't made it back to the gym since the port placement, and my husband keeps telling me it's not going to happen if my body isn't up for it. Well, "Come on, body! We need this, so deal with the trauma!"
     Oh, one additional note - everyone at Dr. J's office LOVED MY HAIR today! They made me feel so special and pretty and tough and punk and YES, I CAN KICK CANCER'S TRASH. YES. I. CAN.