Burn, Baby, Burn

Hola!

Radiation:  When I first started radiation, I thought it was going to feel like it would go on forever. However, I am happy to announce that it has flown by! I only have a few sessions left and it is actually bittersweet--the sweet part obviously being done! Since I go every single day, I have become close with the staff/techs and can say I will honestly miss them! 

While I explained the process of radiation in my last post, there isn't much more to it, except for something called the bolus! A bolus is like a silicon or gel mat that is placed on top of my chest for the duration of the session and I use it every 3rd treatment. The purpose of the bolus is to concentrate the radiation more closely to my skin to give that area some extra attention. It doesn't feel any differently than my other sessions, though I can usually see my skin turns more pink/red after those sessions. 


Apart from extreme fatigue, the only other side effect I am experiencing is clearly radiation "burn." The pictures below show my progress! 

                                     Day 4

                                Day 8

 

Day 12

Day 20

Day 21

The reason for the sombrero looking outline in the picture above is because they are mapping out my last 5 treatments (in that area) which is targeted to where my tumor was. 

                                  Day 24

                                Day 26

                               Day 27

Even though you can see the burn on my chest getting progressively worse, it usually doesn't hurt that bad, since I don't really have any nerves in that area, but this section under my armpit will literally be the death of me. The doctor gave me a prescription cream to help with it, but I am still in pain. Cannot wait until it is gone! :) 

Hair: 

Surprisingly enough, waiting for your hair to grow back is harder than losing it in the first place. When I look at these pictures, yes I am clearly able to see progress, but day to day it is frustrating because I feel like it is moving at a snails pace. 

                                   March 10

                                      May 28

                                      June 14

                                        July 2

                                       July 15

                                    July 31

                                  September 2

                 September 23, now able to part it! 

Even though I started coloring my hair when I was 10 (thanks, Donna!), I know it is coming back a slightly different color than my true natural color. This is completely normal for post-chemo patients! Mine, as you can see, has a gray-ish hue to it, and while part of me wants to let it stay virgin hair forever, we all know it will only be a matter of time before I start to color it again :) As far as the texture goes, which also usually changes from chemo, I am pretty sure I will still have some curl to it, but at this point it is too short to tell. 

Surgery:

As mentioned in my previous post, my radiologist stated that he thinks I will be able to get my reconstructive surgery in December, which I was beyond excited about. However, this past week, I met with 2 different plastic surgeons: one was Dr. Mahabir, aka McDreamy from Mayo Clinic, and the other was Dr. Creech, in Chandler. While they were both pleased at my progress, they each told me that the earliest either of them would be willing to go in for surgery would be March (6 months post radiation). The reasoning behind this is because even though I will technically be done with radiation, the effects of radiation do not stop as soon as my treatment does--my skin will likely harden (which is normal) and internally will take time to heal. Because of this, surgery any sooner than March would likely result in a "failure", meaning I would have to have secondary surgeries to repair the damage done by the initial surgeries. Although discouraged, I know March really isn't that far away, and it is still significantly sooner than my original reconstruction date, which was October 2018. I will visit again with the plastic surgeon some time in February to get a more official surgery plan set in place. Stay tuned!

While being examined by Dr. Mahabir last week during the surgery consultation, he noticed a significant sized lump in my left (non-cancer) side. This lump is about the size of a grape. Although he is confident it is fat necrosis, which is a common side effect from mastectomy, he recommended I get it checked out just in case. So, I brought it to the attention of my radiologist, and they also recommended we investigate it further. SO, I had an ultrasound on it the other day, and they recommended I do a biopsy of said lump just to be safe. This will take place on Tuesday, September 26. While I am annoyed have having to get ANOTHER biopsy, I certainly want to make sure that this lump is benign so I can stay on the road to being cancer free! As always, will keep you posted :) 


As always, thank you so much for your support throughout my journey! I actually received the sweetest message from a friend from high school the other day, who has recently been diagnosed with cancer herself. She told me that all of the information i've posted on her helped her out with processing her diagnosis, as well as helping her cope with the expectations as to what to expect as she begins to undergo treatment. Of course I do not write in this blog to seek attention, as it is helpful for me personally to get my feelings out, but to have had her say that I positively impacted her was enough to make me ugly cry (which I did). I love you, Mary! 

Good Times Never Felt So Good

Hey!

Finally time for a long, overdue blog update! Part of the reason why I haven't written in awhile is because things seemed to have slowed down for awhile and there was nothing new to talk about, and part of it was because I've been so busy! :) However, this update will be filled with a ton of information and (sometimes graphic) pictures, so I hope you are ready! 


Chemo:  As mentioned in my previous post, after my surgery in May, I was told I needed to get more chemo due to the cancer they found during surgery. This chemo, called Carboplaten, was a new one for me, and overall I handled it better than any of my others! Gotta save the best for last, right?! Thankfully with this one, I did not lose my hair, which has started to grow back (more on that in a bit), I did not have any nausea or sickness, and I actually had energy! It was amazing. The biggest downside of Carbo, for me at least, was how it messed up my counts. I showed up for two of my three chemos only to find out that I would not be getting treatment that day. The first time it was because my white blood cells were too low, which meant more of the bane of my existence, aka Neulasta, which makes your body produce more bone marrow to create the white blood cells and it is super painful. yay. The second time, which was on the day I was supposed to have my final chemo, was because my platelets were too low. Platelets are the part of your blood that makes it clot. Since this chemo was scheduled the week before I was supposed to start work, I tried my hardest to fight my doctors and let them allow me to get treatment that day. A normal platelet range is 150,000-500,000. Mine was 59,000! So they more or less said if I got treatment that day, and the chemo would lower my count even further, I could have severe internal bleeding that would cause me to be hospitalized. Since I was already way over being in the hospital, I decided I'd be a good patient and listen to them and wait a week go get my final treatment! 

I know I already posted a few pictures, but here is a collage of 9 of the 12 of my chemo sessions :) 

Healing From Surgery: Besides having massive scars, you don't realize what an intense surgery a mastectomy is until you are recovering from it. While I briefly talked about the first few weeks of healing in my last post, I did not fully grasp how long of a recovery process it would actually be.

6 days post surgery

18 days post surgery

28 days post surgery 

 I went to physical therapy 1-2 times per week to work on getting my strength back by stretching out my chest and shoulder muscles, as well as exercises/massages that (tried to) help stave off lymphedema, otherwise known as lymphatic fluid building up in your limbs. This physical therapy lasted for about 7 weeks in total, and even after that I was mostly restricted on the amount of weight I was allowed to carry. For the most part, I have the majority of my strength back, but every now and then there is some sort of internal pull that I feel (usually when I'm trying to lift too much, haha) so then I know I need to tone it down a bit. At one point, I *slightly* opened up my incision by doing too much...oops. 

 Torn incision--1.5 months after surgery


Many people have asked me if I still have any feeling left in my chest aka non-boobs. It is sort of hard to describe...you know when you go to the dentist and they numb you for a filling, and then the rest of the day you are pushing on your cheek with you finger and you know you are touching it but you really can't feel it? That's my new normal for my chest, haha. The reason for this is because of all of the nerves that were cut out during surgery. I may regain some more feeling over time, but certainly not like it was pre-surgery. 

As far as adjusting to life without breasts, it's mostly a day by day process. Of course there are the perks, such as no boob sweat! No need to wear a bra! Backless dresses and shirts are now able to be worn! But then there are the down sides, aka mostly feeling uncomfortable in my own skin. My clothes fit differently, I feel wider, and (especially when I am not wearing a wig) I do not feel feminine and beautiful. I know that it is temporary, and I will get my reconstruction surgery soon enough, but it is still a battle most days :) SPEAKING OF! In my last post, I think I described my meeting with the plastic surgeon, in which he said I would not be able to get my reconstruction surgery until about a year AFTER I finish radiation. However, after meeting with my radiologist two weeks ago, he said if I continue to heal as well as I am and handle radiation like a champ (which I will, obviously) then he is optimistic that I will be able to get my reconstruction in December over winter break! *hallelujah* I was SO excited to finally get some luck that was swinging my way! 


Radiation: After what feels like waiting for forever, I have finally started radiation! So, I've had 12 rounds of chemo, AND a double mastectomy, so why in the world would I need even more treatment?! Well, the answer is pretty simple: I do not want to ever have to go through this fucking process ever again :) I think we can all agree Layne and I have dealt with enough cancer, don't you?! With our family history, my chances of recurrence (aka cancer coming back) is about 40%, even with all of the treatment I've done so far. With radiation, however, that number decreases to less than 5%. As tired as I am of treatment, this is a no brainer. 

The radiation process is simple enough: I go in 5 days a week, for 7 weeks, to get treatment. Each session lasts about 3 minutes, but it takes about 15 by the time I get in there, change in to my gown, they get it set up for me, etc etc. During my first appointment, I got 5 teeny tiny tattoos (as do all radiation patients) that tell the techs my specific parameters for how I am to be lined up with the machine. Literally they are so small that one of my students asked to see one and I couldn't even find it. 

Once you are in there, you lie down on the table and put your arms behind your head so they can align you properly. When it begins, the machine slowly moves around you to deliver the radiation. 

The black lines are outlining the tattoos for alignment....the blue half box is detailing where all I will receive radiation (everything to the left of that line will get zapped) 

It doesn't hurt at all, and you can't even see it happening...it is more or less like getting an x-ray! Once a week (on Fridays) I see my radiologist to check in for progress and he can do an examination. 

While I have only just begun treatment, I am quickly starting to see/feel side effects. The biggest, without question, is fatigue. Because the radiation kills cells (both cancer and regular), your body is working hard to repair the cells that have been lost, leaving you exhausted. Unfortunately, they said that this will get worse as treatment goes on, but will be done as soon as I am through with radiation. The other side effect that I am beginning to develop is "radiation burn" which is more or less a sunburn...without the sun. As of right now I am a slight pink, but they said to expect it to become worse the further in to treatment I go. I can combat this with lotions and things like that, and like the fatigue it will go away, but I am keeping my fingers crossed that it does not get too bad. As I was doing my research about radiation and what to expect, I thought to myself, "Oh, I should look up pictures of radiation burn so I can adjust my expectations! How proactive of me!" Here's a tip: DO NOT GOOGLE RADIATION BURN PICTURES. Of course, these results are the worst of the worst, but oh my god I wanted to cry. 



Random Life Updates: I've moved out of Layne and Aaron's house in to my own apartment which I happily share with my two puppies! It is right across from the TopGolf in Gilbert :) 

Teaching at Williams Field High School is the most amazing thing. I love 10th grade, I love the students here, I love my fellow English teachers, I love the administration...everything is just the way I wanted it to be! I am also coaching Freshman girls' volleyball and am having the time of my life. As I had to postpone my original trip to Australia (which was supposed to be in January) because of my diagnosis/starting treatment, I am happy to announce that I have gotten the go-ahead from my doctors and will be traveling down under during fall break, and spending 2 glorious weeks exploring and seeing my friends that I met last year! I am literally counting down the days already because I am so excited...My last day of radiation is September 28th and I am leaving the night of September 29th :) 

Aaaaaaaand final update...I got a new wig the other day #treatyoself

Life is good. 

As always, thank you for the love and support. It keeps me going! 

xoxo, 
Kristen 

Seriously? Part 2

Hi all,

It's been an eventful few weeks, to say the least! Here we go:

A couple of weeks ago, Layne and I were at the mall shopping for an interview outfit for me (more on that later). A few times throughout our time there, I had to stop to catch my breath and was getting light headed from walking and would find a spot to sit down every so often. After about the third time this happened, and Layne said I looked like I was about to pass out (which I was), she pulled a pulse-ox out of her purse (because of course she had it in her bag. While she was on maternity leave. #supernurse). For those of you who don't know, a pulse-ox is that thing the doctor puts on your finger to get your heart rate and oxygen levels. ANYWAYS, my heart rate from walking was 155. This, as I learned, is absurdly high, especially from simply walking. She checked it again after we got in the car and I had sat for a few minutes and it was now in the 120s, again, absurdly high. She instantly asked if I wanted to go to the hospital. I laughed and said she was being paranoid, and I was just out of shape. Being the protective big sister/nurse that she is, she made me call the on-call triage nurse at my oncologist's office and tell them about it and I left a message. 
About 30 minutes later, while I was driving to Barnes and Noble (the best store), I got a call back from the nurse who said I could either come in to the office the next day to get checked out OR I could go to the ER. I asked what she would recommend and she said based on my symptoms (elevated heart rate, tightness in my chest, my hemoglobin levels--even though she was going off my labs from 3 weeks prior at my last chemo), it was highly likely I was having a pulmonary embolism, which is a blood clot in the lungs. I said okay, and called Layne to let her know I was now driving myself to her ER, and she said she would call ahead and let them know I was coming (#perks).

After I was admitted to the ER, I got an EKG, which looks at your heart rhythms, and had blood drawn for labs. I felt like a super star, because mostly everyone who works in the ER knew who I was and I felt special that they were all coming in to check on me! My oncologist happened to be at the hospital and heard I was in, so he came to see me too!

The EKG showed that I didn't have any abnormal arrhythmias, meaning my heart was pumping normally, just at an extremely fast pace. The doctor came in and examined me and wanted to send me for a CT scan to get pictures of my lungs to check for a blood clot. After a couple hours of waiting, I had the CT, and about an hour later, we had the results. My labs were all normal, and the CT scan didn't show any blood clot. So, the doctor told me I could stay overnight to be observed, or I could go home and have Layne and Aaron watch me. Obviously, I chose to go home! 

The next day (Thursday), I noticed my left arm was looking swollen and puffy. I asked Layne for her opinion, and she agreed it did. We decided to keep an eye on it. On Friday, my arm was still puffy, but I wasn't in any pain, so I decided to forge ahead and go to Dallas for my friend Megan's wedding. By Friday night, my legs and feet were now also puffy. I had edema, which is the accumulation of fluid in your extremeties (hands, arms/feet, legs). Here's a beautiful picture: 

#kankles

I brought Layne's pulse-ox with me to track my heart rate, and even walking up one flight of stairs would put my heart rate in to the 190s. It was a good time, obviously. The new theory, since pulmonary embolism had been ruled out, was that I was suffering from congestive heart failure, which can happen with chemo. I know that term sounds scary, and believe me I had my own "oh my god am I going to need a heart transplant" moment, but all it really means is that my heart wasn't working as well as it should. I promised Layne and Aaron I wouldn't over do it, and that we would get it checked out on Monday when I went in for my surgery.

On Saturday, the bride-to-be and a group of us girls went on a wine tour and it was SO much fun. They all knew what was going on with me and my heart issues, so they were being great about checking on me, but also knowing this was my first time I was able to drink since starting treatment and agreed that I had earned the right to have some fun! 

First drink, wahoo! Also, puffy left arm! 

Let's just say one of the few cancer perks is having a prescription of anti-nausea meds for when you inevitably become hungover. 

The wedding on Sunday was BEAUTIFUL and I was so happy to be able to be there for it! Megan and Matt, I love you guys so much :) 
I went to the airport straight from the wedding, because YIKES, I'm getting surgery in the morning! I was lucky enough to have my cousin Roxy fly down from Colorado to help out for a few days, since Aaron had to go back to work from paternity leave on the day on my surgery. 

On the morning of the surgery (Monday), I was oddly at ease, after weeks of anxiety building up to the operation. I wasn't supposed to go in to the OR until 1:30, but of course things were running late, so by the time 2:30 rolls around, and I haven't eaten since the night before, let me tell you I was HANGRY. While the surgeon was marking me up, Layne was telling the resident surgeon about my little ER trip a few days prior. He said he would let her know, but this was the first part of the miscommunication that led to the nightmare that was my life last week. 

The surgery overall was a success. Even though I feel that I look like Frankenstein's monster when I look at my scars, I know that my surgeon did a great job. While the surgery was meant to be outpatient, they decided to keep me that first night because it was taking so long for me to wake up from the anesthesia, my oxygen saturation level was low and I was unable to go pee (both of these can be normal after anesthesia). So Layne and Roxy left for the night around 9:30 PM and I was eventually carted up to (what felt like) the penthouse suite! I had a large, private room and it was awesome. What is not awesome, however, is trying to sleep in a hospital. For the first 3 hours once I got up there, the nurse had to check my vitals every 15 minutes (not exaggerating). After those 3 hours, it moved to vitals check every 30 minutes, and then eventually every hour. Around 4 AM I started to have pretty severe pain in my left side, which I shouldn't have been able to feel since they gave me a nerve block and I was pretty doped up on Fentanyl. The on-call doctor came to check it out and tracked how it was looking/feeling. It was becoming super swollen and she said it is possible there is a vessel leaking (blood) and they may have to go in surgically to get it all out. Once my regular surgeon came in in the morning and evaluated me she agreed I needed surgery and they took me back what seemed like straight away! As 
Layne mentioned on Facebook, I had a hematoma (collection of blood) that was 300cc/about the size of a Coke can. My surgeon had mentioned that this complication usually happens to one patient of hers per year, and as my luck would have it, I was that patient. While recovering from my 2nd surgery, my heart rate jumped and stayed in the 140s so they did an EKG, just like when I was in the ER the week prior. They also took labs to check my chemistry levels since I was extremely lethargic and white as a ghost. I had been anemic from the chemo, but losing all that blood from the surgery had sorta tipped me over the edge and dropped my hemoglobin down to 7.5 (extremely low) and I then got my first blood transfusion, which may or may not have turned me in to a vampire--still waiting on those results ;) 

During these days in the hospital, I saw SO many different people: surgeons, hematologists, cardiologists, nurses, social worker...even a Priest came in to see me to see if I needed anything! It was overwhelming to have this many people trying to help me get healthy, especially when the lack of communication between them all grew and grew, which I thought was about to give my poor sister a heart attack via frustration. 

By Wednesday, an echocardiogram was ordered to check out my heart, because my HR was still so high, the swelling in my arms and legs still had not gone down, and I was short of breath doing absolutely nothing. I was feeling better, and while the cardiologists found nothing suspicious on my echo and cleared me to go home, my surgeon wanted to keep me another night to meet with an oncology cardiologist the following day (womb womp). Thursday morning I got ANOTHER echo, this time with strain, to test if my heart was functioning improperly. Surprise! It wasn't. They determined my heart simply was reacting to the cardiotoxicity from the chemo and there was no underlying defect. Unfortunately, they took more labs and my hemoglobin had dropped down very low again, so I got ANOTHER blood transfusion. All in all, they finally released me around 5:30 on Thursday with a crap load of prescriptions--pain killers and beta blockers--with a follow up with my surgeon in a week.

Recovering at home was SO much better than in the hospital. It was hard (and still is!) that I am unable to pick up and hold my favorite dude baby James, but it was nice to be back in my own bed. Because of the drains I had on both sides, I essentially had to sleep sitting up, which I had kind of gotten used to but still sucked. Between Thursday and Sunday I slept most of the time (or at least tried to) and was extremely grateful for painkillers. 

On Wednesday (5/10), I first had an appointment with my radiologist, Dr. Olejyar, and he determined I would be ready to start radiation in 3 weeks time. Woo! The next appointment was set up and I was feeling great. From there, Layne and I went to Mayo for the follow up appointment to see my surgeon so she could assess my incisions and *hopefully* get my drains out. She said that I am healing nicely and my drains were ready to come out and I honestly could have cried because I was so happy. If you've ever had drains after surgery, I know you understand haha. While it hurt SO bad to get them taken (or should I say ripped) out of you within an inch of your life, I was relieved when they were finally gone.

Now. During the initial surgery the week prior, they had found some residual cancer in my breast and in one of my lymph nodes. Because of this, and because of my predisposition to cancer because of my gene mutation blah blah blah, my surgeon stated that I will need more chemo. She said it would be better to "over treat" me than under treat me and allow this cancer to spread anywhere else or come back more aggressive. Obviously, having just finished 5 months of chemo 3 weeks ago, this was not news I was excited about. I told her I would talk to my oncologist and go from there. 

Today is Friday, and I've just come home from seeing my oncologist. He agreed that because there was still cancer in my system, I will need more chemo, and thus I will begin a regimen of Carboplaten (a new chemo for me) in just over a week. I'll have 3 rounds total, and each will be 3 weeks apart, thus totaling 9 more weeks worth of chemo. Because it is too hard on the body to do chemo and radiation simultaneously, my radiation has now been pushed back until after my new chemo ends. While I am discouraged at having to do more chemo, I know that it is for the best. 

ON THE PLUS SIDE, I AM HAPPY TO ANNOUNCE I'VE ACCEPTED A JOB TEACHING ENGLISH AT WILLIAMS FIELD HIGH SCHOOL! Since our school calendars are year round, I'll begin working in July! Those of you who know me well know that I've always wanted to be at the high school level and I am so excited to be able to begin getting my life back to normal. 

As always, thank you all for the love and support! I can't tell you how many texts and messages and I've received since the day of my surgery letting me know people are thinking of me and it honestly does give me that drive and motivation to keep going when things get rough. I am so lucky to have such a wonderful support system. 

Love, 

Kristen

Busy, busy, busy

Again, where has the time gone?! Just kidding. This time I know exactly where it has gone--it has been quite the adventure over here! Ready for another long post? Here we go:

Let's start with my favorite picture of my 4 roomies, and introducing the new little Madeline!

In my last post, I was just about to start my new chemo, Taxotere. Even though the end was in sight, these last 3 treatments were the hardest on me. Since they were every other week, I had to go back on the Neulasta patch, aka the bane of my existence. Body aches were worse than ever. My acid reflux finally kicked in, and I would cough so bad that I would throw up multiple times in the night even though I wasn't nauseas. However, I finally hit the milestone I was waiting so anxiously on! FINAL CHEMO! 


The treatment room was busier than ever, so besides feeling bad for waking one sleeping guy up when I rang the bell, I got tons of claps and cheers and it made me tear up! My lovely chemo nurses also all came over and gave me big hugs and I just felt really special :) Since Layne had had my BEAUTIFUL baby niece Madeline the day before and was across the street in the hospital, she wasn't able to come to my final session, but luckily I had our friend Jess with us to take pictures and videos and FaceTime with Layne as I rang the bell! 

For the last week and a half, I've been dealing with a lovely (aka hideous) rash on my face and issues with my eyes, a lovely parting gift from my last chemo session. After 2 different doctor appointments yesterday to deal with it, I essentially learned my gland that produces tears is working in overdrive, leaving me with tears constantly running down my face (and having to explain to strangers that no, I'm not crying and yes, I'm okay) as well as the duct in the bottom portion of my eye/eyelids are clogged and I may need to get drains put in...ugh. Hopefully this gets resolved from the meds they gave me so it won't resort to that, but we will see!

Not Happy

Eyes nearly swollen shut

Eye actually swollen shut

The bigger (and more pressing, I suppose) news is about my double (also known as bilateral) mastectomy. The original plan was to get my mastectomy and reconstruction done in New Orleans from the same surgeon who did my mom's . I even had a surgery date scheduled! However, with 2 babies at home and Layne unable to travel with me, AND the fact that I would have to stay in New Orleans for multiple weeks post-surgery, it made me reconsider and start looking in to surgeons here who could do the same procedure, as there are only a handful in the country who could do the specific type of reconstruction I am wanting. This type, know as DIEP flap, essentially takes fat from your belly (or other parts of your body if need be) and reconstructs your breasts out of this fat instead of the use of implants. 

Anyway, I found that there are 2 surgeons at the Mayo Clinic in Scottsdale who are able to do this procedure, so I set up a consultation so hopefully I could get it done here. The day, however, did not go as I had hoped it would. I first met with the general surgeon, Dr. Pockaj (pronounced Podge-kai) who will be doing the mastectomy. She let me know that I was not a candidate for a mastectomy and immediate reconstruction (meaning they would do both in one surgery) because I will be needing radiation. I was confused, because everything I had been told up to this point had led me to believe that I would be able to get reconstruction before radiation. She didn't do a great job explaining the "why" of it all to me, so I had a mini-breakdown after the consultation, which I had to quickly pull together because I also had a mammogram and an ultrasound back to back . After these tests, I then had my consultation with Dr. Mahabir, the plastic surgeon who would do my reconstruction. Side note: he is my McDreamy. Holy Hell. #dibbs. ANYWAY, I expressed my confusion with not being able to do the immediate reconstruction, and he explained that with radiation, the breast often shrinks, and with how intense the DIEP reconstruction is, if it were to shrink from the radiation, there would be no way to fix it (I know its more scientific than that, but just bear with me). So, he proposed that I would have the mastectomy, and an implant-based reconstruction so I would atleast have SOMETHING, and then a few months after I finish radiation, he would go back in and remove the implants and do the DIEP procedure and everything would be perfect! I agreed this was a compromise I could live with, and we then moved forward so he could examine me. But then, of course, my dreams were shattered once again. 

Upon seeing this one area of necrosis on my breast, he unfortunately told me that I am not a candidate for immediate reconstruction of any kind. 

Spot on the Left: Cancer cells spreading to skin/Spot on the Right: Tumor. This is a picture from November, pre-chemo and pre-surgery

December--Cancer has spread to skin cells 

A few weeks later! The scab is sign of necrosis (cell death), essentially meaning the cancer is eating away at my skin. Good times! 

After this completely scabbed over and fell off, I now just have a scar, but once Dr. Mahabir saw it (and I showed him these pictures), he said that because there was cancer present in the skin, they have no choice but to remove it, meaning I will only be having the bilateral mastectomy. I got upset because of course this was not the news I was hoping for, but he assured me this way there is no risk of leaving any cancer behind and that, ultimately, is the goal. So, the new and official plan is:

May 1: Bilateral mastectomy. I will be completely flat and/or concave, depending on how much of my pectoral muscle they will need to remove (because the cancer has spread to there as well)

June: Begin radiation--7 weeks, 5 days a week

6-12 Months after radiation ends: Reconstruction (finally!) 

I am still adjusting to life without hair, and the majority of my sadness/anxiety over this new plan stems from the fact that I started growing boobs and got my first period when I was 10 years old. I don't remember what its like to be flat! I know things will be fine, but it will be a new adjustment period after the surgery for sure. But hey, I am starting to get some peach fuzz on my head! #progress

I think that is all for now! I'm sure I will have a ton of pictures posted from the surgery, and possibly if you are lucky, a great video of me coming out of anesthesia... ;)

Love you all! 
xoxo,
Kristen

Setbacks

Has it really been over a month since my last post? Yikes. Sorry! 

Part of the reason for not posting anything is because well, there wasn't really any new information! At the beginning when I first got diagnosed, I would go to multiple doctor appointments per day, and now I pretty much only see my oncologist every few weeks just for a check up before chemo. 

I finished my first 4 rounds of chemo, Adriamyacin and Cytoxan. While they did get progressively worse, I knew the end was near and I would have fewer side effects once I switched to the 12 sessions of Taxol (another type of chemo). This one would be administered weekly instead of every other week. The best part of it was I would no longer have to receive the Neulasta patch, which is the robot-looking thing that gives me medicine to make the bone marrow come out of my bones to help prevent any kind of infection. 

As with any new treatment, I was nervous going in to it, especially since my trusty partner in crime Layne couldn't come with me since she had to work. However, she did leave me a sweet note for me to wake up to that morning which really helped calmed my nerves, AND my bestie/roomie from Teach for America came out to visit me for the weekend from Atlanta so it was going to be a good time no matter what! 

Overall, I started out feeling better on the Taxol (not as much nausea, no bone aches from Neulasta) but was much more tired. I've slept more in the last 3 weeks than I thought was humanly possible--sometimes 18 to 20 out of 24 hours. whoops. 

Each day before chemo, I have to go and get blood drawn so they can check my levels of various functions to make sure I am healthy enough for chemo. Going in for my second round of Taxol, the chemo nurse came over and sat next to me and said "I'm not judging....but I need to know if you've been drinking any alcohol lately..." (Alcohol is the one thing I can't have during treatment) to which my response was "bitch I wish!" and she laughed. She then asked if I've been taking a lot of Tylenol...also no. I asked her why, and she said my ALT and AST levels were really high. ALT and AST are both types of enzymes that your liver produces. A normal range for ALT is 5-46. The week before mine was 29, but on this day it was 107--a significant jump. A normal range for AST is 10-41, the week before mine was 20, and on this day it was 67. Although they were concerned, they do not prevent you from getting treatment unless your levels are triple the normal range, so they said they would keep an eye on it. I asked what may have caused the jump, and she said it could be nothing, but will have to compare it to next weeks to see if it has something  to do with the Taxol. Being the paranoid freak that I am, I decided to start researching what heightened levels of these enzymes could possible be a cause from. Have you ever gone on something like WebMD and typed in symptoms of the common cold and it basically told you you were going to die any day? That's pretty much how I felt, haha. Most of the results are linked to liver disease caused by alcohol dependence (I knew that's not what mine was from) but I found some that suggested it could be a sign of liver cancer. Last year, mom's issues all started when they found cancer in her liver. Naturally, this was my first reaction: 

So of course, I had myself convinced that my cancer had spread and I was going to die. That was fun. Layne and Aaron tried to tell me how unlikely that was, but when you literally have nothing on your hands but time to sit and dwell, you can't help but freak out, haha. I went back the following Friday for my 7th session of chemo (and 3rd session of Taxol), but it took about 25 minutes for the nurses to come over and discuss my labs (from the previous day) so I knew it wasn't good news. Once they finally came over, I was informed that I was unable to receive chemo because my ALT and AST levels have risen too high--this time, my ALT was 147 (remember, the normal level is 5-45) and my AST was 55 (normal level is 10-41). 

My oncologist came out to talk to me, and assured me this was not a sign of liver cancer and I shouldn't worry (too late), but rather meaning my liver is working overtime because my body is just taking a beating from the chemo, since it is a toxin, after all! It took about 10 times of Aaron explaining it to me for me to finally get it, but he said your liver's primary function is to flush out toxins from your body. To do this, it produces enzymes. Since my enzyme levels were so high, it just meant my liver was working extra hard. 

After stating I would be taking the week off of chemo to give my body a break, he gave me 2 choices moving forward: I could either continue on the Taxol, but have lower doses each week; or switch to a different chemo called Taxotere, and go back to receiving treatment every other week but only do 3 sessions total. I told him I trust his judgement and would do whichever he recommended, and he thought switching to Taxotere is the better option. Guess who also had Taxotere as part of their chemo regimen 8 years ago? MOM. Guess who is the one person I couldn't talk to about it? MOM :( That was one of the hardest parts for me, as usual. 

So, as long as I am doing well on Taxotere, I should be done with chemo in 6 weeks. Downsides:
1. I have to go back on the Neulasta patches, aka the bane of my existence
2. The literature suggests (as well as the first few Google searches) the possibility (and lawsuits available) of permanent hair loss associated with Taxotere. Yes, I look awesome in my wigs, but I will never ever ever ever ever ever EVER complain about having to wash/style/upkeep my real hair. I want it back more than I can say. There is nothing fun about feeling uncomfortable in your own skin, even after all these months.
3. Good chance of my nails falling off...ugh

So, I guess I will just have to wait and see! On the plus side, I have so much to look forward to within the next month: my Big's wedding! James' 1st birthday! Baby Girl Salvo being born! Megan's wedding in Dallas! YAY! 

Thank you for your continued love and support! Extra big shout out to my Bogle family for the amazing bag of gifts and cards and (my favorite part) letters from my students! You guys are the best!

Til next time!
Kristen  

A Series of Unfortunate Events

Hey all, 

As always, thank you so much for your kind words and support. You have no idea how grateful I (as well as Layne and Aaron) are. While there is not much to update on on the medical side (no news is good news, I guess?), I wanted to do a post anyway! 

For those of you who knew me growing up, you knew if I wasn't out playing sports (and by playing, I mean dominating) with the boys, I was reading. Besides Harry Potter, my other favorite book series of all time is A Series of Unfortunate Events by Lemony Snicket. While they made a movie about 13 years ago covering the first 3 books, it felt very rushed, but great all the same. When I found out Netflix was creating a series based on the books, I just about cried with joy. As it premiered a few weeks ago, I obviously binged it in 2 days and have nothing but positive reviews. IT IS SO WELL DONE. While I was happy to be able to see such a big part of my childhood come to life on the screen, it made me reflective and cannot help but notice that up until this point, my own life could nearly be categorized as one big series of unfortunate events. But, Mr. Snicket says it best: 

Now, I certainly don't want this to turn in to a "woe is me" type post, because that's just not my style. The last week has been pretty rough for me both physically and emotionally, so I wanted to write a post with full honesty and emotion. I'm not the most emotional person on the planet, so sorry in advance. 

Physically: I briefly mentioned in a post the other day that I had my roughest post-chemo week yet. This would be an understatement. For the first two treatments, I did not begin to have any side effects for 6 days after (so the following Thursday), whereas this treatment I started having side effects on Sunday (just 2 days after) which became severe by Wednesday. Even with a new anti-nausea patch, on top of 3 different anti-nausea medications, I still was feeling queasy. So yes, I threw up a lot, especially as the week went on. Worse than that was the pain I felt from the Neulasta (the medication that makes my bone marrow come out of my bones to boost my white blood cell count to help prevent me from getting an infection). By Friday, this was me: 

Taking ache-y to a whole other level. Those of you who sent me bath oils/salts/bombs, THANK YOU, because they were put to use. Multiple times a day. Side note: sorry about the water bill this month, sis! Even though this week was rough for me, I know it still is not nearly as bad as it could be, for which I am grateful! 

Emotionally: *sigh*. Where do I begin? One of the comments people make to me often is, "you're so strong!" and while yes, I appreciate it, and yes, I know I'm strong, when life throws you the shit it has thrown me and Layne, you kind of don't have any other option. When I was sitting in pre-op before surgery about to get my port put in back in December, Layne came back to sit with me and I had a break down at the hospital because I was so frustrated. Even though I was okay with my diagnosis, I still resented being put in this position. I remember crying and telling her that I just wanted a "normal" life. One where my parents were still alive or never had cancer or I didn't have cancer. One where maybe I'm not strong but it's okay because that meant I didn't have to go through everything that I have up until this point. What's that saying? Two steps forward, one step back? I get my dream job with Teach for America...I graduate from college...dad dies. I become best friends with mom...I get accepted and am working through graduate school...mom dies. I graduate with my Masters degree and begin to travel the world...come home and get diagnosed with cancer. 

Even though I have been [mostly] positive through my treatment so far, there are days when I feel lower than low. Many of you know that I have struggled with depression and anxiety for many years and that is a whole other battle that I fight on a daily basis. I try my best to keep it to myself (because that's just how I'm wired) but it is tough to put on the brave face 24/7. All too often I find myself tearing up out of nowhere at wishing I could call my parents, or better yet, have them here with me. Grieving is a process, and one that is not linear. 

So many of you comment on my pictures or posts and tell me I am an inspiration, and I am happy that you see me as one, but please know that I am fallible. I do not have it together all the time. I am not Superwoman.  

Do you ever hear a song and just feel like it represents your life perfectly? Well, I do...all the time. The one that seems to be my mantra lately is "In Repair" by [my boyfriend] John Mayer. 

Too many shadows in my room
Too many hours in this midnight
Too many corners in my mind
So much to do to set my heart right

Oh, it's taken so long
I could be wrong, I could be ready
Oh, but if I take my heart's advice
I should assume it's still unsteady
I am in repair
I am in repair

Stood on the corner for a while
To wait for the wind to blow down on me
Hoping it takes with it my old ways
And brings some brand new luck upon me

Oh, it's taken so long
I could be wrong, I could be ready
Oh, but if I take my heart's advice
I should assume it's still unsteady
Oh yeah, I'm never really ready, yeah
Oh yeah, I'm never really ready, yeah
I'm in repair
I'm not together, but I'm getting there

Although I have had my own series of unfortunate events, it has made me in to the strong woman I am today and will continue to grow to become. It is a journey. MY journey. I'll continue to share with you as long as there's someone who wants to listen. 

xoxo,
Kristen

The Conehead

Who is ready for another long update?! :) 

Well, let's get the medical updates out of the way. In my last post, I mentioned that I would be getting two new biopsies--one for a mass in my left breast, and another of the lymph nodes on my right side. Of course, these had to be done on two separate days at two separate locations (because that's the way my life works, apparently). 

The first biopsy was done via a breast MRI, meaning I had to get an MRI done, then would be pulled out so they could position the needle for the biopsy, put me back in and take MRI images, pull me back out and adjust the needle, etc etc until they were in the right spot. The mass they were trying to biopsy was on the right side of my left breast, but the only way they could access it was to insert the needle on the left side of my breast and go allllllll the way through it to get to the mass. Here's a fun picture to show you what it basically looks like! 

If you've ever had a mammogram, it's basically the same concept in the sense that they mash your boob all the way in the contraption to the point where you think they are trying to squeeze the will to live out of you. 
Although I was mostly numbed up, at one point I did feel the needle (which is really more like a drill) and was easily the most pain I've ever felt in my life, haha. I yelped pretty loudly and the doctor performing the biopsy said, "oh, did you feel that?!" YES, SATAN, I DID, THANK YOU. 

Once I got re-numbed, they were able to finish the procedure, so in total it took about an hour. There was quite a bit of blood when all was said and done, and the nurse assisting let me know I could expect "some bruising." Apparently we have different concepts as to what this meant, because even within a few hours, it began to look like this: 

And by the next day, like this: 

The part that the band-aid is covering is where the needle went in, and the mass they were trying to reach was where the bruise is. 

The next day, I went in for the biopsy of my lymph nodes. This one was much easier, so I was happy the harder one was over, but it was a bit more nerve wracking because I was able to see them do it, whereas the MRI biopsy I couldn't see anything since I was laying face down. For this one, the biopsy was guided through an ultra-sound, so once they located my lymph nodes they were able to take a bunch of samples. I was completely numbed this time and couldn't feel a thing, but each time they would take a sample, there would be a sharp noise, which kind of sounded like when someone snaps a rubber band on you. They took 4 different samples and after that I was done! 

During the same week, I also had an endoscopy performed, which is where they take a camera and go down your throat to look at your GI tract. This was needed to check out my "stress induced" ulcer. While this is a simple procedure, the prep to get me to that point was rough. I couldn't eat or drink anything for 8 hours before, which already made me cranky, but also left me dehydrated and feeling nauseas (mostly from chemo side effects, though). Once I got back to the prep area, the nurse tried to start an IV for the anesthesia but couldn't find a good vein. She made about 4 attempts with no luck. So then she called over another nurse to try who, similarly, had no luck. A THIRD NURSE COMES OVER...at this point they are all simultaneously trying to find a vein in my arms and hands and cannot access one...SO THEY START TRYING TO START THE IV IN MY FOOT. My foot! Like I was some strung out junkie!!!!!! I was basically watching them like this: 

Anyway. Freaking 30 minutes later they finally get one in my arm and put me under anesthesia so they could do the procedure, which took about 30 minutes. 

Results: We got the results of the biopsies back that week (yay!) and it was nice to have the information back so quickly. The mass that was found in my left breast was NOT cancerous, but the samples that they took from my lymph nodes were. This doesn't necessarily change my treatment plan, but it is a good thing that we started chemo right away, because if left untreated, the cancer could have easily spread to somewhere else in my body. 

From the endoscopy, they found that I did have an ulcer (duh) which they took some biopsies of, as well as--wait for it--A HERNIA. 

*How I feel my body talks to me now* 

Anyway. I have a hiatal hernia, which means part of my stomach is pushing up past my chest cavity in to my esophagus, so it basically looks like this: 

I was put on two medications and I haven't had any pain so I guess it means they are working...?! I go back next week to follow up for the biopsy results that they took.


We also met with Dr. O'Lear, my radiologist, before my 2nd chemo. He, along with the rest of my team, is AMAZING. He was extremely helpful and knowledgeable, and took the time to walk us through all of the information. I've been asked quite a few times, "Why will you still need radiation even after you get a double mastectomy?" This is a valid question. As Dr. O'Lear explained to us, if the risk of cancer coming back is higher than 20%, you are recommended to get radiation. In my particular case, I have at least a 40% chance of my cancer coming back without radiation. AKA, it's a no-brainer to get it. I won't begin this treatment until June, and then I will receive radiation 5 times a week for 7 weeks straight. 

Just as I was getting used to my short hair cut, I began to get extremely tender headed around day 12 after my first chemo. My entire head was tingling, and it felt like my scalp had been severely sunburnt. They told me my hair would start to fall out 14-17 days after my first chemo, so I knew it was coming. I wasn't really nervous, nor did I have a huge emotional meltdown like I was expecting to, but I didn't want to be unprepared for when it came out, so I went....WIG SHOPPING! 

I know what you're thinking. Yes, those mannequin heads are what nightmares are made of. 

All of the ladies who worked at this salon were extremely helpful and kind and helped me make the process really fun! Those of you who have known me for a long time know that I LOVE to change my hair, so I thankfully have not really felt any sort of identity crisis when it comes to having to get a few new hair styles. The first one that I picked is (surprisingly) basically an identical copy of the cut and color that I just had and I love it! 

For the second one, I decided I wanted to go back to brunette!  

Last but not least, I have mom's old wig :) 

Yes that's a wig, yes she is rocking it.

By the time my hair started actually falling out, it was pretty annoying. I now know what my dogs feel like every time they shed. So what do you do when your hair is coming out by the handful?! You enlist your trusty roomies to have a head shaving party with you, obviously!

It begins: 

The comb-over:

The "Troll":

The Mohawk:

The Mustache:

Aaron: "I need some hair for my mustache"

Layne: "Just pull a piece out of her head!"

*Pulls piece out of my head* 

Me: *Rolls eyes*

The cul-de-sac:

The Creeper:

The Rat Tail:

And, last but not least, the final product:

We had lots of fun during the head-shaving party, and I am happy to say the only tears that were shed were tears of laughter. Layne kept telling me I look like Sinead O'Connor:

But my biggest concern was that I was going to look like a Conehead, and not just because this is how I've been eating lately:

Biggest upside to having no hair? You can get ready to go anywhere literally within 5 minutes. Biggest downside to having no hair? Your head is cold all. the. time. I have two beanies from LoveYourMelon that I am obsessed with--so warm and cozy! Not sure what I'll do when it starts getting hot again (so, like next week), but that is a problem for future Kristen to worry about. 

Last but not least, I have to give the biggest shout-out to everyone who came out for the spin class my Big put on for me. I think I can speak for everyone who attended when I say that 3 days later, we are all feeling like this: 

Although it was SO much fun, I do not think I have ever been this sore in my life. Jill Mauthe, you are one kick-ass spin instructor, and you had all of us busting our booties while smiling and laughing to an epic playlist . Here's a few pictures from the event!

Big/Little sandwich! 

This pretty girl and her hubby are having a BOY!!!!! #babyGibney

Sean hurt his knee so couldn't do the spin class, but still came out to support! <3

I want her shirt.

Our relationship summed up in one picture

miss our Alpha Phi Exec days! <3 

While I am still doing well overall, this second chemo was harder on me than the first was, which leads me to believe each one will be harder than the next. However, it still is not as bad as I had expected it to be, and I can deal with feeling like crap for a few days. The biggest side effects this time was nausea (and some puking), headaches (i usually just put an ice pack on my head and it helps) and feeling achy/sore from the Neulasta shot which makes the bone marrow come out of my bones. All part of the process, I guess! 

As always, thank you for your support, kind words, and good vibes! Love you all! 

xoxo,

Kristen