Oh, Chemo, day… How I love you. Today’s #ootd {in the fashion of all the fashionistas, of course} aka outfit of the day, was none other than my high school cheerleading uniform. Okay. honestly, it was a friend of mine’s uniform because I don’t know where mine is {Thanks, Tasha!!}. But, I was a legit cheerleader in high school at the best high school ever {And no, I wasn’t one of the popular crowd… so that’s not why I think my high school was rad. It just was. Pure and simple fact.} so, I decided it was the perfect costume to wear for #5. Because everyone’s been cheering me on and my medical team has been so AGGRESSIVE!!! {Also, I wore WW underwear. Because really.}
Adam and I got our getups on and snapped a pic prior to leaving the house. {For those wondering, we didn’t date in high school OR even go to the same school… we just happen to have the same colors. Match made in heaven, I swear}.
Our day started at 8:20 with lab draws. You always do labs before Chemo at Nebraska Medicine {I can’t speak to other centers} in order to figure out whether your counts are good enough for treatment and also, to get baselines in the event that something should go haywire during the three weeks in between. {They always make you mask-up when they access your port. Because safety first, people}
From lab draws, I went to the clinic waiting room and chatted it up with the front desk gals who I have come to know and love. Everyone is just so stinkin’ friendly and positive. And crazily enough, there are a fair amount of Survivors working there which is so inspirational to me. Maybe I’ll work there someday, who knows?:)
I also got to sit next to the loveliest woman who shared her faith with me. Adam ran to get bagels and coffee for the Infusion team and I popped a squat with one woman going through treatment, her daughter, and this angel who was in their “tribe”. It was as if she was meant to be there with me yesterday.
When I saw Dr. Tandra, I snapped a pic with him in my uniform. They put up with my craziness so well:). {And, this guy is amazing.}
Here’s the good news, the tumor has continued to shrink shrink shrink. I think that if I was going to have to go through treatment, I am lucky to have this regimen that is performed neoadjuvantly. I explained this a bit at the beginning but essentially, from my minimal medical understanding, when your tumor is under a certain size and you are triple positive, you can get your chemo prior to surgery. This treatment plan is showing huge efficacy for Triple Positive patients.
For a little medical lesson, breast cancer can have three different hormone receptors. You can be ER+ {estrogen}, PR+ {progesterone}, or HER2+. This basically means “what is feeding your cancer” {again, I am not a Dr. friends… this is just my understanding of my disease}. You can be one, two, or three of those things. They determine this from your initial biopsy pathology results. I am what is called Triple+ {not shocking. I’ve always considered myself to be pretty positive}. Some people do not have any positive receptors, making them what is called Triple Negative. What the hormone receptor information is used for is your treatment plan — what drugs you will receive, etc. So, not all breast cancers are created equal, oddly. And this is why some people receive Taxol or “The Red Devil” while I receive: Taxotere, Carboplatin, Perjetta {a new miracle drug for Her2+ patients that has only been available to the masses for about 4 years, I believe}, and a drug called Herceptin. I am receiving 6 rounds of all 4 drugs and then will continue with Herceptin until I complete 18 rounds {essentially a year} but Herceptin does not have all the side affects and your hair begins to grow back, etc… so really, when I ring the gong after round 6 {in three weeks, assuming all goes well!!!} that will be thrilling. Sorry to get all cancery, I just figured it might be interesting for you.
So, what my oncologist explained is that my tumor has continued to shrink to about the size of a BB, and if you’ll recall, it began at 2 cm. So that’s pretty fantastic. Additionally, he mentioned that my need for radiation will now be determined post-surgery depending on whether or not I show partial or full response to the chemo. You guys… did you see that? I may not have radiation! What?! I am not getting my hopes up on that because I will do WHATEVER I need to do. Whatever. But it’s more incredible to me that the response has been so visible from the chemo. That provides so much hope, doesn’t it? And, they may look at putting me in a clinical trial if they do radiation because of my treatment plan and age. And having worked with such research-based organizations, I am ALLLLL about doing trials if it can help others who will go through this experience down the road, ya know?
Okay… so then, I went over for chemo and my friend, Kellie, greeted us in the waiting room with more magazines and Gatorade and treats than anyone deserves.
I had a big support group with me yesterday. I’ve been so fortunate to have so many people willing to take time out of their lives to come sit with me during my spa days! I’m sure not certain what I’ve ever done in my life to deserve such great goodness but I think the reality is, God is Good. And while not everyone gets to receive goodness, I am so thankful for the amount I’ve received. Yesterday, cast of characters included: sorority sister, Kellie, my friends {and past co-workers} Nicky and Shannon came, as well. And of course, the hubs. Pastor James came again {seriously, a pastor who shows up anytime this 33 year old mama is in-patient or getting chemo?! If you don’t have a church, are looking and don’t know where to start, seriously, I would suggest you try out Living Grace in Omaha. My pastor endured listening to 5 girls gabbing about brazillian waxes, crotchless panties, and the like. My word. He’s a trooper. But we try to keep chemo talk light, ya know?:)}. Adam went and got lunch for the crew, my friend Jenna {who is a three year survivor… and a ROCK STAR} came and even showed my her post-surg boobs… which I know sounds kinky given the fact that I was wearing a cheerleading uniform and all but it was really amazing to see and feel the result post reconstruction. I basically have no fear about that part as of now.
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| Pastor James … a trooper. He listens to all my friends craziness and then reads a passage he’s selected and then we pray in a circle together with everyone there. It’s very special to me. |
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| My fellow Her View From Home writer, Terryn, helped facilitate a coupon for this awesome Stormy Kromer hat that my Oldest rated an 8.5 and thinks it will “look cooler when I have more hair”. And, there are some of my warrior bangles. |
We then went to see Dr. Thayer, my Surgical Oncologist. Can I just say again, how incredible my Nebraska Med team is? I know, I say it all the time. But a lot of people wonder why I didn’t get a second opinion but I think 1}when you click, you click 2}when you talk to other docs in the field just in a friendly convo and they believe in the treatment plan, you feel confident with it 3}I LOVE the multi-disciplinary model they use. When I first had all my scans and such sent over, there were 15+ doctors, etc, sitting around a table, determining my treatment plan together… and they all consult each other throughout, within the same office. I love that. They are all on the same page. It’s incredible. A one-stop shop.
Dr. Thayer described my procedure to me… Even though I have a tiny lump left, I will still have a partial-radical mastectomy on my right breast. It is named that due to the fact that I have lymph node involvement. A lumpectomy is not a very viable option for me due to the amount of pre-cancerous cells present in the breast {DCIS, stage 0. Chemo doesn’t kill those}. Because of my size of DCIS involvement in ratio to my breast size {read: I have itty bitty titties}, a mastectomy is pretty much my option. I will have a prophylactic mastectomy on the left side. This means that I have elected to have a bilateral mastectomy. I chose this option rather than leaving the left breast due to my age. While recurrence within the other breast is less likely than a recurrence elsewhere, I know my nerves and keeping the good breast will just make me more nervous over time. I’d rather not go through the same treatment again in six years due to the other breast behaving badly when I can safely remove it at this stage and have two breasts that appear the same, as well.
I am also electing for a nipple-sparing surgery… I know… crazy, right?! I am an excellent candidate due to my age, my blood-flow to my nipples, the size and shape of my breasts, and the placement of the tumor in comparison to the nipple. I was nervous, for awhile, about electing for this option because of the recurrence issues however, there is only a 1% recurrence rate with this procedure… which, if you’re curious, is lower than my recurrence rate overall. So, on the advice of my doctor, I am going with it. This means that my incisions will be cut under the cusp of each breast and then, they will go in to my lymph nodes through my existing scar from my sentinel node biopsy. They will remove my first and second “batches” of lymph nodes which, depending upon each person’s anatomy, can be 10-30. They then send all the tissue, the lymph nodes, and the nipple margins to pathology. And, 5-7 days post-surgery, I will have results on cancer presence. This will let them know if I need to go in and have my nipples removed in the plastic surgeons office {they do this after pathology results come back with margin information. If I have to have the nips removed, I will have either tattoos or reconstructed nipples. I mean, pretty cool way to get my first tattoos ever, right?}. And like I said, it could be full or partial response to chemotherapy which, now that we are at this point means… drumroll… I may not need radiation! Crazy talk. Again, I am totally prepping myself for it, regardless because I’ve been mentally prepared for it since my first diagnosis appointment. Because I have no control in this so I am not going to start pretending now that I do.
The surgery will be scheduled on Monday and it will commence 4-6 weeks post my last chemo sesh on the 29th. It will be an 8 hour surgery and then I will be in the hospital for 2-3 days post op. I will come home and take the first week very easy, the second week, I will feel more like I can get up and move around. I will have four drains {remember Carl?} as well as dressings to change out. By the third week, I will be able to move around easier. And by 4-6 weeks out, I should be able to start using my arms more. It is important not to move your arms too much because of the risk of tearing a flap or tissue that is trying to repair. So, I will adhere to all recommendations because I don’t want to have to go back in for repairs. I am a huge rule follower:). I will find out about Lymph Node positivity when all my post-surg info comes back. The results of my post-surg pathology will also determine my final staging… which is just crazy. I won’t go UP to 3. But, I actually could go down to 0, 1a, 1b, or up to 2b… right now, I am loosely at a 2a given tumor size and lymph involvement. So, while I am not celebrating the idea of 0 and not so sure that I ever will… it’s crazy to me to think it’s even an option.
During the surgery, another piece is inserting expanders. Tissue Expanders are designed to stretch and build out the area and the skin where your old breasts used to live. Some people can have tissue taken from other parts of their body to expand and build up the space but due to my body type, I am less of a candidate for that. Which means, I won’t just get to select a size and say, “pump me full of 500 ccs” because it’s all about how much I can get stretched out through the expanders. And I would have expanders regardless because if I have radiation, they want to make sure they stretch the skin prior in the 4-6 weeks following surgery in order to make sure the skin stretches because rarely will radiated skin respond well to stretching. The expanders will then stay in for up to 6 months before the reconstruction. This, from what I understand, is to make sure that you have a few clear scans prior to them performing reconstruction. I will have scans every three months for the first couple of years. Then every 6 months. And then, at some point, move to every year. At five years, I will technically be in remission assuming all scans are clear. That will be a big day.
The reconstruction will be done by a plastic surgeon and I am happy with the office I’ve chosen to go with through my Surgical Oncologist’s reference. I’ve seen their work and I think they get it so I am not nervous about that. The tissue expanders will come out at that point … they are harder and look more like balloons have been put up to your chin so I may look like a porn star for a bit but hey YOLOWC. And then, I will know my more normal sizing and have normal implants after the full reconstruction. And depending on the outcome, I may need additional surgeries if there is dimpling or other funkiness. {Side note: I have a Survivor friend who just had liposuction because that was the only way to fix the dimpling in the breasts. I mean, wha?! If you got to, you got to, right?}.
Here is the best part… guys… I am almost done with chemo. I can’t believe it. During the first round, I thought…. oooooeyboy… because it stretched 5 weeks and I had so many hiccups and I was still processing everything. But wow. Once we got on an every three week cycle, it’s been pretty amazing. And I just keep receiving the goodness of great responses to chemo. Thank you, Jesus.
I will continue Herceptin post-big chemo, and then, for ten years, I will be on a drug to keep my hormones in check and to prevent the cancer from returning. Ten years instead of five because of my age. Additionally, we will discuss if they will put me on Tamoxifen which is for pre-menopausal women and comes with more side effects {hot flashes, weight gain or loss, etc} or if they will suppress my ovaries with one drug and use an Aromatase Inhibitor, which has far less side effects but you have to suppress the ovary function because that will keep you in menopause. Knowing we are done with having kiddos, if I could have a chance at Aromatase Inhibitors, I believe I’d love to at least have that convo. I will also do genetic testing to determine if I am BRCA1 or 2 positive. Not only to determine if I will need a hysterectomy to take my ovaries and uterus but also to make sure my sister, niece, boys, and nephews are aware of any genetic link. It is unlikely given my triple positivity BUT I want them to know. And, interestingly enough, even though breast cancer in men is more rare than women… it can, in fact, manifest in the prostate for men so that will be important for all this testosterone that surrounds me:).
I often hear people say chemo is the hardest part because it’s sooooo unpredictable. So I am thrilled to have blown through it with such a good experience. With such exemplary care. With such angels as nurses. Oh, you infusion nurses have changed my life. With aides and front desk staff who brighten my day and I feel to be friends with. With resources like Glenda at the wig shop. With Dr. Tandra, Dr. Thayer, and their ROCKING nurses, Anne, and my true angel nurses — Cathryn and Deb. It truly takes a village to knock this cancer out of the park. And they are all so committed to me. To ME. And of course, my GP who I will forever owe for ordering that first mammo — Dr. Saxena — I owe you my life right now. Six months to a year and my diagnosis, likely, would have looked very different. I am a very blessed thirty-three year old breast cancer patient.
And to leave you with a little humor… I’ve been told through all of this how fortunate I am to have such tiny breasts — easier to find lumps, my friends! Additionally, in the words of Dr. Thayer, “You have excellent breasts. I would have a lot of patients who would LOVE your breasts. They’re not droopy. They’re symmetrical. Great shape and firmness. Great nipples.” I mean… YAHTZEE. Because between oncologists, GPs, Radiologists, Radiology Techs, my OB care providers, lactation consultants, ex-boyfriends {we all have a past, people. Don’t act shocked now.} and of course, my husband, I can think of about 15-20 people who have ever seen my breasts {because I’ve ALWAYS been so self-conscious of how mine look, honestly} to hear someone who sees so many tell me that I’ve got boobs to boot, well, I will celebrate that. And call it a silver lining. Because silver linings, they’re everywhere.
Sorry for such a long post, and I may have even left out small tit-bits {see what I did there?} but I wanted to walk all of my cheerleaders through my day so you could understand where I am at in the process and where I will go from my last chemo treatment which SHOULD happen in about three weeks. And, because my appts made for such a day — 8:20 to basically 4:30, I had a lot to share. So, two more Crashlis. Two more worries about infections and c diff. And one more looooooong visit to my favorite infusion center. And yes, my costume is already planned. Just FYI. But I’m not letting that cat completely out of the bag. Because I want you to be as excited as I am. And for anyone going through this process who has questioned my breast cancer “story” now you have most of the deets of my treatment plan and docs.
We celebrated with drinks and Cilantros last night because even though I was tired, it was such a great day. And we wanted to cheers to my in-laws for having the boys all day long.
On my last full chemo day, even though my port will stay in for a year the Herceptin infusions, I will ring the “Cancer be Gong” bell… and I will celebrate. I will have a few friends there whom I’ve invited. I will have a costume. I will go out for happy hour afterwards. I will CELEBRATE. I may never run a marathon, but I think that cancer, right now, is my race I am running. And I’m about a third of the way through and feeling like I’m hitting my stride. This is doable. I am not dying of cancer. I am living with it. And that’s because of alllll of you. Because of the prayers. The meals. The “flare”. The messages. The inspiration. The love. The cards. The flowers. The check-ins. The moral support. It makes for so many incredibly happy days. Because I know that I may have an emotional let-down post-chemo. I may start to get scared for an 8 hour surgery. I may feel anxious, daily, once I have completed my treatment plan … that there is cancer everywhere. So thank you, thank you, thank you for your goodness, your spirit, your prayers. I will selfishly be asking for them for awhile. And I will send them right back to you whenever you require. But thank you for making this part good.
And EVERYTHING from my incredible family, framily, and of course, my boys, and The Love of my life. Alllllllll the goodness. Wow. Pretty freaking amazing. Thank you.
And in case you missed it on my Facebook page, here is my video from yesterday when I nearly gave my beautiful nurse, Michelle, a coronary because I was dancing. So forgive Anchors Aweigh. It may need a repeat try without the cords {sorry, Michelle:)}.
