Phew. Just catching my breath from summer, as I have all kids in school for like three minutes total today. Mama’s can we get a collective cheers and we survived high five! A lot went down since last time I wrote. Sorry. I promised to be better about updating more frequently, but alas this is life.

Things were rolling along greatly from surgery recovery till a nasty dang infection came into my life. I’ll spare all the details, but after a four day hospital stay we ultimately had to go back in for another surgery and remove my left expander. Expanders are like a skin babysitter, holding the place till final reconstruction surgery can be done. Mine came back positive for staph once it was out. Insert eye roll emoji. This is exactly why I had my babies at home, stupid hospitals. I most likely picked it up during my mastectomy. The good thing is that it was my left non-cancer side. That means I got to have radiation with my right expander in, saving my skin making my final reconstruction better in the long run. Life with one boob is weird. Especially for a girl who appreciates symmetry. Have you seen my organized shoe closet?! In greek mythology, amazons–a tribe of badass women warriors, went so far as to remove a breast to make way for their bow. I now only see myself as a real life Wonder Woman. That is until your fake boob flies out from under your shirt at the park while your leaning down putting the crazy ass toddler’s shoes back on for the 400th time, right in front of the hot Dad. Yep people, can’t make this shit up.  I’m still finalizing surgical plans, but there will be two or more ahead of me in the coming year to get this body put back together. Good thing I adore my plastic surgeon and trust her wholeheartedly. Her, that’s right. All my surgeons and docs are badass amazon women warriors.

Radiation came and went. We ended up staying here in Austin and we are all so glad we did. It was just a quick five minute trip from my house and everyone was so kind and great, making the daily task doable. My skin held up amazingly well. Like, shocked everyone with it’s awesomeness. After all I have been through, I’ll take it! The fatigue was something I was warned about, but overall I felt pretty great. Worst part was just going everyday and having a super flexible schedule to sit around and wait on doctors and other patients for six and a half weeks straight.

After much debate and research we all decided Tamoxifen (which is a low dose chemo/hormone therapy pill you take for 10 years) was not going to be aggressive enough for me. Therefore, I am well into my road of ovarian suppression. Since my cancer grew from hormones, we have to shut that shit down. Right now I am receiving monthly injections until my ovaries go to sleep, which is proving to be a bit difficult. Even my oncologist referred to my womb as a “powerhouse.” I go back tomorrow for more blood work then on Monday another appointment to see if they are headed in that direction, if not hysterectomy may be added to my list of future surgeries. Oh joy!

I finally got to leave the state, hell even the city, in 9 months and we took a family road trip vacation with our Austin besties to Rosemary Beach, FL. It was crazy and awesome and adventurous and amazing! Sand in my toes, ocean breeze in my hair, and warm sun on my skin was so good for my soul. We just booked a 4 day anniversary get-a-way to Portland and Bend, OR. Not quite the Grecian extravaganza we were planning on, but Garrett got a big promotion at work (!!!) and he needs to stick around and not piss anyone off with a huge vacation right now. I mean, we kinda need health insurance, right? Adulting sure can suck. I’m super stoked for him though! A much deserved move into a Director position and now managing a team of his own. You rock babe!!

Summer highlights:

• my bestie and her girls came from CO (again!!!) and her littlest took a nap with a bag of peanut butter m&m’s (lolololololol–holy mess!) and we had a reunion with our two other halves!
• T had her first tap recital and we all watched in awe as her arms and legs flailed the wrong way, much like her leggy Mama in her youth (time to find a softball team!)
• kids went to one million summer camps all over Austin
• Tennyson got a last minute invite to Camp Kesem. An incredible week long sleep away camp for kiddos with parents who have cancer (cue the tears)
• Hollis found what he wants my final reconstruction to look like (pic below)
• big kids had a musical theatre performance of School of Rock that was INCREDIBLE!
• Beckett started Kindergarten!
• G threw me a surprise 35th birthday party complete with friends from out of town and a 80’s cover band dance party!
• Hollis got his first haircut all the while I cried picking up his bleach blonde curls off the floor into my plastic baggie to save and never make it to a baby book

  

 

So much of Cancerland seems to be in a foreign language where you need a PhD to navigate through it. Pathology reports are the best example of this.

I got results back on Wednesday and I have just been sitting with them, processing them, and trying to decipher them.

Overall, my doctors are pleased. The results came back not necessarily bad, but certainly not great. I had a good response to chemo, but I couldn’t get all I needed. So because of that all 3 of my tumors came back positive, although they were significantly smaller. The best news of the path report is my surgeon was able to get good margins! This means no cancer cells are seen at the outer edge of the tissue that was removed.

My lymph nodes are the nasty part. They are the crazy SOB’s that have all along made me advanced Stage (III c) and caused all the worry. When the cancer spreads outside it’s original tumor and spreads to the lymph nodes they are now in the bodies “highway” to go hog wild on a joy ride. My surgeon removed 25 lymph nodes. 25!!! Again, here is where I go overachieving. Most people in the axillary (armpit) have 15, I had 22. One of these came back positive. She removed 3 nodes from my infraclavicular (under the clavicle) and two of these came back positive. My nodes also had “external extension” meaning they spread outside the node. See….show offs! This is a gut punch. These infraclavicular nodes have been the lump in my throat worry this entire time. They make me high risk for reoccurrence and my case trickier than most.

So what does all this mean: It doesn’t really change much. It stresses the importance of radiation and for me to get that started as quickly as possible, and hormone therapy. Since my cancer grows off of hormones we have to send signals/shut down those from my body. I will be taking Tamoxifen (a pill) for 10 years to keep those hormones in check. Hello hot flashes! I was re-staged to Stage II, which is the first time in my life I’m escatatic to be getting lower at something!

Radiation is what I go to next. I have to be able to hold my arm above my head for 30 minutes for them to do the mapping. Post surgical instructions are that I can’t lift my arm above shoulder height for two weeks, so I hope to be able to do mapping by week 3 or 4 at the latest. I will keep you posted on where we decide to do radiation. We had decided to stay here and not got to Houston, but that may be back on the table. I will need 33 daily (M-F) treatments, so 6.5 weeks. Holy sunburn!

I am continuing to recover amazingly from surgery. My docs are very pleased with my wounds and healing. I am looking forward more than anything to having my (4) drains removed on Wednesday and being able to take a long hot shower. I am like a Mama duck with all these babies. I haven’t taken anything at all for pain since Wednesday and every day I wake up a little less sore. Sleeping is hard, so I spend the night rotating from my bed to my borrowed zero gravity power recliner and I have been enjoying cat naps during the day while the kiddos are at school. Overall, it’s all been so much better than I ever could have imagined.

Garrett and I are planning on a F U cancer and 10 year wedding anni trip in October to Greece. It’s been a fun distraction to dream of, plan for, shop for my new gravity defying boobies, and light at the end of this dark ass tunnel.

So much love has been poured in to me the last week and I am so grateful. All the smiling faces that have stopped by and the sweet gifts and treats that have arrived have made me so happy. A super special thank you to my Mama, Miss. Angie. This woman is incredible. All the time, but especially now. She truly missed her calling as a nurse and has been taking unbelievable care of me and my entire family. Thank you so much Mom, you are the true definition of a selfless eternal nurturer. I love you!

As promised, I went in for surgery last Wednesday May 3rd. With a later check in time, we got to drop the kiddos off at school just like a regular ol morning, which was really nice. We got all checked in and then came the dreaded time to put in my IV. I have “small and rolly” (the very technical term) veins anyway, then with all the chemo they are just shot. After about 4 pricks in my arms and 6 in my feet and ankles, they decided it would be best to put me under with gas then figure out the IV sitch. Awesome. NOT.

My breast surgeon started her work at 12:30 and was out talking to my fam at 5:00 and my plastic surgeon finished up her part at 6:00pm. Long time under, no doubt. You should have seen the waiting room tho, or maybe you did and were there. Huge party. Just the way I wanted it. Friends and family everywhere. There wasn’t any Cards Against Humanity playing, but hard to dictate the party rules when your asleep!

Back to the veins, I have taken my badassery (yes, that’s a word) up another level. I woke up with the IV in my neck. Apparently, that’s the only one they could get to cooperate. Felt very junkie-chic.

Just to keep up the drama my heart decided to go berserk around 11:30pm after I woke up. Heart racing, pulse got up to 170, bp shot up, very similar to my last Taxol reaction. They quickly moved me up to the cardiac floor, which is where the party is at. After puking, a bunch of meds and a costume change I was feeling much better. Just like a frat party.

My hot shit Cardiologist came to see me Thursday morning and concluded that I am a freak. No one can tell me why this is happening, other than my body doesn’t like drugs, and although it is extremely scary and alarming it is not necessarily harmful or damaging to my heart. Show off. She prescribed me some meds to carry around in case I ever need them, but to keep on truckin and be assured that I am OK in this department.

We got home around 6:00pm on Thursday night. I am astounded at how well I am doing. I haven’t taken a prescribed pain pill since I got home from the hospital and I have been up movin and groovin ever since. G and I even walked up to breakfast yesterday. It’s kinda been like a little mini staycation. The kiddos have been in Dallas since Thursday, and although we miss them like crazy the calm and quiet has been incredibly healing! Those crazy bastards come home in a couple hours! Ahhhhhhh.

As always, thank you so much for the love and support. The few days before surgery I will always remember. Many visits from friends, gifts, flowers, treats, calls, special lunches, encouraging words, farewell tatas toasts, etc. You guys sure know how to fill a girl up!

Wednesday we get the full pathology report back from my surgeon. We are all hopeful this is going to be nothing but good news. I promise to report back but please send all your rainbow sparkly unicorn glitter juju this way.

Yes! It’s me!! I am alive! I logged on to my Caring Bridge site and saw my last post was January, my bad…. turns out chemo, cancer, doc appts, scans, etc all SUCK and take up lots of time and energy. I promise not to stay away for so long again!

Yes! I’m on the other side. The done with chemo side! Chemo chews you up, spits you out, tears you down, runs you over, backs up and runs you back over, runs you over again, you get the picture. On January 31st I received my last AC infusion. Boy was I glad to kiss that shit goodbye. I’ll be happy if I never see bright red medicine in a GIANT syringe ever again! I started my Taxol journey on February 14th. Yes, Happy Valentines Day to me. Good thing I had Gordo there with me that day to make everyone laugh. Taxol, although it doesn’t cause the nausea and extreme feelings of death had it’s own set of problems. After my first infusion I got chemical burns on the backs of my fingers and lips and blisters all over the tops of my hands. To combat this in the subsequent weeks I cryogenically froze myself (yes, just like Austin Powers) by chomping on and keeping my hands in Sonic ice during infusion. This helped! I then started developing a crazy rash that was on my heels and elbows. At treatment number 5, the docs said this is getting cray and cut my dose by 20%. They promised me that it was still effective up to a 30% dose cutting, so I trusted and we kicked it down a notch. All my symptoms got SO much better! I was cruising along till Taxol number 9 came along.

April 11th I went in for number 9. It’s strange how life gives you routines. As weird as it was, I was in my groove. Drop off the kids, pack my chemo bag, pick out my crappy sugary snacks, get my ice, have a friend pick me up, laugh at my eyebrows (or lack there of), drive to the hospital, check into the cancer center, have my port accessed, wait for blood work to come back, get excited over white blood counts and hemoglobin numbers, and start the meds dripping. Everything was cruising along as it always does on infusion day. I met a super sweet chick on my third round of AC that was getting her first infusion. We instantly became fast friends and have looked forward to sitting next to each other and bitching about cancer, chatting about our kids, sharing how to draw your eyebrows on and not look like a cholo tips, what craptastic snacks we each brought for the day, etc. Jeni is a nurse and boy am I glad she was there on this particular Tuesday.

Not long after the Taxol started dripping, after all the pre-meds, I started to feel weird. Apparently, I turned BRIGHT red and it was traveling up my body. Jeni yelled to Derek, our fave chemo nurse, and he came running. The rest was a pretty big blur for me, but they had their crash cart box, epi pen, H1 blockers, and lots of other “life saving” meds. I felt my heart racing like it was about to explode and apparently that’s exactly what almost happened. They pumped me up with a bunch of meds and steroids and almost instantly I felt better. As fast as my body went up, it came down. Very confidently Derek came over and said “oh, we’re gonna finish this bag today.” I just looked at him and said OK, but was thinking WTF?! They gave me some saline and were ready to go again. As soon as it started dripping again, it happened again. By this point, my Oncologist has sprinted down the hall in her heels and all the nurses were crowded around. Everyone declared NO more!

Apparently, it’s not out of the normal to have a reaction. But to have it twice, that never happens. My body gave us 2 warning shots to tell us it was done. Being who I am, I was not OK with this answer. The doctors all told me I needed 12 of these treatments and dammit 12 was what I was going to get! My oncologist and Derek urged me to listen to them and their concerns about how dangerous it would be to go forward with more. Taxol’s scariest side effect is cardiac toxicity and clearly I was wadding in those waters. I told them I would think about it and see them next Tuesday.

This Tuesday I came back with my mind made up that I was done. I had been given two second chances with this shit and that may be all I get. A couple things Derek told me that day sat with me. #1 Jeni saved my life. Had she not been a nurse and sitting by me I may not have gotten help in time. (thank you sister!) #2 He has had two patients who had the same thing happen, they tried again and they went to the ICU then later died. At some point the treatments are no longer healing and are dangerous and I have hit that point.

I rang the “all done with chemo” bell on Tuesday and man that felt amazing! Every time I saw someone do it during infusion I envisioned my turn up there to ring it, it was all the feels for sure!

So, what’s next for me: surgery. I am all set to have a double mastectomy on May 3rd. Dreading the hell out of this, but will also be happy to have this hurdle behind me. As a woman who breastfed all three of her babies (for a total of 46 months) I am mourning the loss of the sisters. But alas, they have cancer in them so they need to get the hell out! Bye Felicia.

Some highlights over the last few months:

-my best friend came to visit from CO (twice!)

-Tennyson lost her first tooth! (the tooth fairy passed out on the couch after chemo and forgot her job duties–thankful for sweet children imaginative minds and last minute scrambles)

-The bigs and Garrett went on our yearly family ski trip to Steamboat–the kids tore up the entire mountain

-Beckett turned 5!!

-we went back to MDA for a check up and they confirmed tumors are shrinking and I was having a great response to chemo (main tumor down 52%, lymph nodes show no sign of disease, and all the small tumors gone!)

-my hair is growing back! bright white and super soft and fuzzy just like a little duckling

Thanks for the continued flow of love and support to me and my family. We are all so appreciative! I would also like to give a special public thank you to my amazing husband. I have not been the easiest person to live with or love lately (thankfully the anger stage has passed for now) and he doesn’t back down. He doesn’t go anywhere. He’s just there, like a rock of love lifting me up higher than he ever has. I love you babe, with all my heart.

 

 

 

sucked. plain and simple.

AC is the big bad bitch everyone claimed it would be. I am so thankful to have only one more of these infusions, but dreading next Tuesday for sure. It’s a whole new mind game to psych yourself up for these. Acupuncture the day before is saving me.

I ended up back in the ER a week ago Sunday with an eye infection. Blepharitis–which is the nasty older sister to Pink Eye. For most folk, NBD but for cancer patients antibiotics for all! Oh joy. Good thing is my counts were OK so they let me go with oral instead of IV. One of the crappiest parts of this whole thing is that you have to be a hypochondriac. If you sneeze the wrong way, the oncologist wants you to call and tell them. Unfortunately, as life works it always seems that you get sick or something happens after hours. Which leaves them only one place to send you….the ER. A cancer patients worst nightmare. I mean, can you think of a germmier place?? Any investors out there looking for your next business venture……a beautiful comfy 24 hour triage center for cancer patients. No germs, no ER drama, just sweet doctors and nurses giving you the care you need without exposing you to the swine flu.

As life works, as soon as Mama gets better baby bird goes down. Last week was Hollis’ first week of school full time. He joined our bigs at their school and we are SO thrilled. But with new schools comes new germs. Not the best timing for my week of quarantine, but we’re making it work. Dousing myself in sanitizer by the minute.

A special thank you to everyone who has sent me gifts, treats, care packages, cards, flowers, warm cookies and ice cream!, beautiful scarves, and so much more. You really, really know how to put a smile on my face and I feel SO loved and supported. THANK YOU!

xo–e

 

what everyone wants to know….

April 29, 2016 some gals and I went out (and saw Black Violin–who were amazing btw, do NOT miss them if you have the chance!) I skipped my nightly nursing of Hollis that night as G was on kid duty, and thought nothing of it. The next morning I woke up with a clogged milk duct, a small mass I could feel. I had 100’s of these along my 21 months of nursing Hollis. I spent the next few weeks trying to get it to move through/go away. All my old regular tricks that I had used for years weren’t entirely working, but still……I thought nothing of it. I was only down to nursing twice a day at that point, so I just thought I wasn’t producing enough milk to push the clog through. I spoke with midwives, doulas, lactation consultants, lymph drainage specialist, my chiropractor, educated people at People’s Pharmacy and The Herb Bar and the consensus was….hmm, that’s strange but certainly no need to worry.

I saw my Midwife for my annual well women’s exam in June and we talked about the clog extensively. We both agreed it was nursing related and we would check back in, in 6 months. She urged me to let her know if anything ever changed. Many people have asked if I felt relieved by this information. My answer: I don’t quite know. I wasn’t worried, so there wasn’t anything necessarily to be “relieved” by. I put it out of my mind and forgot about it.

Fast forward 5 months. Having been much more worried about what was going into my kids lunch boxes than what was going on inside my boob, time marched on. I began to notice (because I’m a belly sleeper) that it was not comfortable to lay on that side anymore. Also, I noticed the lump was considerably larger, harder and lumpier. I called my OBGYN office and they called me in a referral to go get an ultrasound.

The morning of the ultrasound was just a normal day. I dropped all my kiddos off at school and went to the imaging center alone. Garrett was out of town, we never thought it was serious or something he should be here for. My Mom even suggested coming up to go with me, and I was all why? no, it’s cool.

When I got checked in back to the ultrasound room I spoke with the tech about the story of the lump and my nursing history. She began her exam. Those of you that have had babies know what happens when something goes wrong on an ultrasound…..they don’t say anything, silence. All you hear is clicking and button pressing, which you know is them stopping to take pictures. She took tons of pictures all around my breast. Tons. I noticed she spent a lot of time up in my arm pit, taking lots of pictures then went over to my neck/clavicle area. More pictures. More silence. My brain was spinning and this is about the time my body went numb. She finished her exam and told me she was going to chat with the doctor and she would be back.

When we were initially chatting during intake she told me that when she left to chat with the doctor it would be very brief and quick. She was gone what seemed like an hour, but I believe was closer to 15-20 minutes. Certainly what I would not call brief or quick. The doctor came back in with her, which is never a good sign. The moment he opened the door, I knew. The look on his face said it all. He could barely even look at me. And here I was, his worst nightmare…..a 34 year old, young, healthy, mother of three small babies. He proceeded to give me another long, SILENT ultrasound. When he finally started talking this is when I officially left my body. All I remember is words like mastectomy, not a candidate for lumpectomy, already spread to numerous lymph nodes, surgeon, blah, blah, blah, blah, blah. Then, any questions?

Ummmm, ya. Yes, I have questions. Only problem is I wasn’t there anymore and all my mind could do was spin.

They sent me one room over to have a mammogram of both my breasts. I have to say, I was extremely underwhelmed by the mammogram. Everyone complains they squish and squash and are extremely painful…..that was not my experience at all. I mean, I wouldn’t sign up for one of these daily but complaining over needing one of these once a year, come on ladies!

They informed me my other breast was clear but we needed to biopsy the tumors in my breast and lymph nodes. Sure, bring it on. My dear friend Taylor had made it up to be with me by that point and she was right by my side, holding my hand, trying to keep a straight face when the doctor was shoving 14 inch long needles and other tools in my body. I have to say, didn’t really feel a thing though.

They told me it would be about 5 days before we got the results back and that was that.

You know the rest of the story……

new life theme song

Welcome to my new shiny blog! The bugginess of Caring Bridge was killing my techy hubby, so he spent his Christmas break building this fancy beaut for me! I will continue to use Caring Bridge for the care calendar (found under Ways to Help–Planner) until if and when we find a better solution. My fave thing about Caring Bridge is the comments and love, so please! keep that coming.

Sorry it has been awhile! Turns out chemo does suck and sent me into a 3 day black hole followed by a week of quarantine, all to do it all over again. Yesterday I had my second infusion. I had the same tingling reaction as last time, but was able to just monitor at home and not go into the ER. This time it came on more fast and furious, but meant that it lasted 12 hours instead of 18. Win! No one really knows why it is happening, I am just the “lucky” one I guess. Insert eye roll here. Happy to report my heart is OK though.

Infusion day is counted as day one. Day two, is typically a good day because you still have all the steroids working. Day 3-5 blow. Last time it was the fatigue that hit me the hardest. I thought first trimester pregnancy tired, was bad…ha! Day 7-10 my white blood count got down to almost zero, therefore having NO immune system I was forced to be in quaratine. Which as you can imagine is a joke living with three tiny germ bags. Then you do it all over again.

My hair started falling out in GIANT chunks on Monday. Which Tennyson will tell you the story, or maybe she already has, or maybe she told one of your kids at school this week that Mommy was screaming and punched the bathroom wall and screamed “dammit”. Your dang right I did, T. Sigh. This is a rough one for me. But alas, it’s depressing as hell watching your own hair fall out so Brittney Spears circa 2007 I will be by this weekend I’m sure.

Thank you all SOOOO much for all the love and support. And a special thank you to Headwaters for all the amazing meals and the ridiculously generous donations to Farmhouse Delivery. We are so looking forward to all the local, organic goodies delivered. One million thank you’s!!!

Entering day 3 tomorrow, so back in my hole I will go.

XOXO,

e

Let’s start with the good news, the news we all need. Bone biopsy came back negative!!! It has not metastasized anywhere, my boobs and lymphs is where it be. I will do a whole post on staging, but I’m leaving it there for now.

About last night…

A few hours after infusion I started to feel tingles from the chest up radiating all down my arms. After a quick call to my oncologist on our way to the ER we went. The A to my AC chemo is a big bad beast. It actually has a given number you can take your whole life (don’t freak, my protocol puts it at about half). It can do damage to your heart so they take extra precautions, so simply put my doc said your 34, we’re not taking any chances. Gordo had my hospital going chariot ready in no time. And talk about the right person to take along with you on an ER trip. He had the whole staff laughing with his jokes, antics, machine button pushing, and other “bananas weird” doings my incredible father does best. Those that know him, love him. Understatement of the century…

After an “abnormal” EKG they had us officially held hostage for the night. We did a parent swap and Mom came to slumber. The tingles had then spread to my legs. They had me all hopped up on steroids, so no sleep for the weary. So, we spent the night chatting and giggling how the chair she was supposed to “sleep” in kept chomping her up like a crocodile because she didn’t weigh enough to keep it down. I’ll chalk this up to another silver lining of all this. Sweet time together.

The morning left me starving and us all wanting answers. They had thrown out a bunch of tests they were maybe going to do, so they had me on saline only/no food or drink bs regimen. After chatting with the docs and nurses and confirming my symptoms were totally gone, my cardiac enzymes came back negative, and further investigating the EKG they decided they were tired of my ass. I have been known to rip off wires, take off blood pressure cuffs, and throw full sass when they blast the lights on at 2:30am for a blood draw. So sorry–F off!

So, what do we know: My system is sensitive and it just got an ass ton of big bad drugs. The EKG showed signs of the right ventricle being damaged, which is way less of a big deal than the left. There are three scenarios of this. 1. It was pre-existing. Since I didn’t do an EKG before chemo, only an echo we will never know. 2. The medicine damaged it and it will get better. 3. The medicine damaged it and it won’t get better, and that’s ok–nothing to freak about. They will keep a close eye on me during my last three rounds of AC and if I wind up there again will do more aggressive cardiac tests.

I got to come home about 3:00pm today. Now off to bed, Santa has a busy couple days coming up!

XO,
e