The First Chemo Session and All That Fun Stuff

Well, another milestone has been reached in this cancer killing journey! I had my first chemotherapy session this past Friday, the 23rd.

To review, for my treatment I will be having six total "main" chemo sessions, one new session every three weeks. Basically, one down, five to go now! At each session, I am being given a cocktail of four main drugs -- Taxotere, Cabroplatin, Herceptin, and Perjeta. These treatments will lead me in to the summer when I will have a small break and then will get my surgery.

I arrived at my first session at 9:00 a.m. and was at the hospital until almost 4:00 p.m. Each of my drugs is given one at a time, so the process can be pretty long. And before they can even start with the actual chemo drips, I have to have blood drawn to run labs to make sure my body and blood counts are good enough to even receive the chemo. The labs themselves take about an hour to come back. While waiting for labs, I also received a pre-chemo drip of an anti-nausea medicine and normal fluids that are designed to help me not feel so sick after the chemo!

Fortunately for me, because my drips are so long, I was told I should be getting my own private room for each of these first six sessions! The infusion suites are really nice. My room had a love seat/sofa, a nice hospital bed, additional chair, nice television, and a big window that looked right out overLake Michigan! As pretty and peaceful as something like this can be, my room definitely delivered. We came prepared with all kinds of things to keep me occupied -- books, board games, and our Nintendo Switch.

Even though I was sitting there for seven hours, there was still a lot of activity going on, and not really a lot of down time. I suppose that helped make everything seem to go by faster. Northwestern has some pretty awesome supportive care services, including acupuncture on Fridays. I've never had acupuncture before, but decided to try and start my day off with that. It was an unusual experience and didn't hurt at all, and it maybe, just maybe, helped my nerves and stiff neck a bit!

Starting this chemo party off with some needles!

Soon after the acupuncture and my anti-nausea drip, my labs were back and I was cleared for the chemo! I was visited by one of the nurses from my medical oncologist's office. She was awesome and answered a bunch of the questions I had been saving up to ask. My chemo nurse also was there frequently to go over my schedule and to also give me all the info I needed about the side effects and what drugs I could take and when to combat the effects. I also had a visit from my Nurse Coordinator who helped us out so much on my very first visit. And finally I was visited by the dietician! I really felt quite popular.

The dietician gave me a lot of great goals to hit. I've never been good with tracking nutrition or trying to follow certain guidelines, but this time I don't have much choice. The biggest thing for me is getting in plenty of hydration and drinking water each day. My goal is 68-101 ounces of water per day, especially in the 72 hours following my chemo sessions. Most of my close friends know that I do not drink water. At all. I am a diehard soda drinker and tea enthusiast. Now, I can still have those things, but for every soda or caffeinated beverage, I have to supplement with an extra serving of water. 

Drinking this water has definitely been the biggest challenge yet! But it is so important. Being dehydrated could mean a trip to the hospital, and I really want to stay out of the hospital as much as possible! I have a pretty good system going to track my water intake. The first day after chemo, I did pretty great and hit my goal. My second day... not so great, but I was dealing with other side effects. I'm back on track today and really trying to do well! 

My other big diet challenge is keeping my protein levels up. My dietician also set a goal of 60-80 grams of protein per day. Protein amounts is never something I have tracked or even paid attention to, so this has also been a bit of a task for me. I usually just eat whatever and whenever I want. But now I am writing down all my totals with every meal. I am finding I have to eat more frequently throughout the day to hit these goals. Basically, three meals a day with lots of healthy high-protein snacking in between. My good protein "go-tos" have been "Uncrustables" peanut butter and jelly sandwiches (6 grams each!) and eggs for breakfast. I already eat a lot of high protein meat substitutes as a vegetarian, so last night I had veggie/meat alternative tacos that gave me a big boost of protein!

One of my chemo drips! The medicine that will
save my life!

Along with all these new things, I have, of course, been dealing with the one thing I was really dreading -- chemo side effects. Before all of this, I felt extremely healthy. You would never know how sick I was inside because I felt great. Good energy, going to school, going to work, dancing, hanging out, etc.! Even up until Friday when I started receiving all the drugs, I was still feeling pretty good. Look at that smile up there! That's the face of a girl who feels relatively okay!

But all "good" things must come to an end, and I am now experiencing my first real chemo related feels. The day of and the whole day immediately after were pretty good. I had a lot of "preventative" medicine in me to keep me from feeling the effects right away, including a steady dose of steroids I had started the day before chemo. They did their job, and despite feeling a little sleepier than usual, I wasn't too bad. 

On Saturday night, Mary came by for dinner since I was still feeling pretty good. Mary has been with me from the very beginning with all of this cancer stuff. She took me to all of my first mammograms and biopsies, and she was even sitting right next to me when I heard the official news that I have breast cancer. It takes a very special friend and person to help take on that kind of emotional burden, and I don't even have the words to express how much it means to me that she has been there for me this whole time! So if anyone had earned the right to see me at my possible "worst," it was her! (Also very special thanks to my friends Erica and Elise who have also accompanied me to several all day hospital visits. I can never repay everyone's kindness!) 

Unfortunately, timing was not on our side, and I did start to experience some side effects Saturday night. One of the coolest, or at least nicest, advancements in cancer treatment is the development of the Neulasta On-Site Injector. Previously, a cancer patient would go in for chemo and then have to return to the hospital the day after just to receive an injection of Neulasta, a drug that helps jump start your blood cells to regrow after the chemo kills them. It's an incredibly important drug, but it has to be taken 24 hours after chemo, thus necessitating the trip back to the hospital the next day. Not exactly what a cancer patient wants to do -- go back to the hospital after being there for seven hours the day before. 

Now they have come up with this device that sticks to your arm and is on a timer that delivers the injection 27 hours later, in your own home! They placed it on my arm right after my chemo treatment, and a little green light flashes every five seconds to let you know it it still working properly. A small needle whips out into you and places a tiny catheter in your arm. It's kind of creepy, but also great! When the timer goes off the next day, the infusion begins and lasts for about 45 minutes. 

Neulatsa On-Site Injector 

Everything worked perfectly and I was medicated as needed during dinner. Unfortunately, about 30 minutes or so after the infusion, all of a sudden my arms, chest, and face turned bright red,  I got a terrible hot flash, I felt very dizzy and extremely nauseous, and had to rush to the bathroom. I spent a good ten minutes near the toilet, but did not get sick. Eventually, the feeling cleared and I went back to normal, but it was my first real "reaction" to anything and startled me since it just came right out of nowhere! 

Those were apparently my immediate side effects from the Neulasta, but at least I will know to expect them next time after my injection. However, Neulasta also has some other wonderful side effects that hit me hours later. Namely, bone and joint pain. This pain hit me at about 5:30 a.m. and was predictably unpleasant. To combat bone pain, it is recommended to take a regular dose of Claritin. They aren't quite sure why the Claritin works, but it does help. I have heard bad stories of women who forgot to take the Claritin, so I have made sure to take mine every morning. 

So that is basically where I stand. I wake up with bone and joint pains and take the Claritin. I am also starting to experience mild nausea a good deal of the time. I take a pill called Compazine for that, and so far it is definitely helping as well. I also take just regular Advil for the bone pain and for period cramps, because of course my period would choose to start right now. And the worst side effect is the fatigue and the heavy/foggy feeling my head has. I'm tired a lot and have been napping the last few days, something I never do. I am trying to listen to my body when it tells me I need rest. But I'm also trying to get up and walk around as much as possible, too. Just today I also noticed my chest and neck breaking out in little white heads, so that's also delightful. And my body is still heeling from my biopsies last week, so now that nerve pain has decided to kick in and remind me those incisions are still there and healing! 

All in all, it could be a lot worse, but I am hanging in as best I can. Hopefully these side effects will remain predictable, but the chemo is accumulative, so this may get worse with each session. I still haven't reached my lowest blood counts and my hair should begin to fall out by the end of this week and into the next. So there's still all kinds of wonderful new joys to look forward to!

Thanks for sticking with me and again for all the love and support!! I will continue to keep you all updated as best I can!

Super Long Not-So-But-Sort-Of-Happy Fun Time Update!

Hey, everyone! I know I haven't done a big update in a while, but that's because I have been going nonstop (it feels like, anyway) to the hospital for a variety of tests and procedures. I know they all serve a very important and special purpose, but it seems never-ending. And just when I think I am done, I get a call telling me that I need to be scheduled for yet another test!

One thing I have observed is that each new test/procedure is just a bit worse or more invasive than the previous one. I have also learned that whatever my doctors (or info sheets) tell me to expect as side effects, I have to multiply that effect by three; it's never quite as easy as they make it sound. For example, after one procedure, the info sheet they gave me said I may "experience some discomfort." What I actually experienced was debilitating pain and soreness and could not sit up unaided for at least three days. (More on that one below!)

So I will try not to make this post too long winded, but it will be another HUGE one as I will give a run down of all the things I have been doing (or, really, enduring) since I had my initial appointment!

Genetic Testing

I think I may have spoken about the genetic testing in my last post? If not, or if so, here is a quick recap. Ninety percent of all breast cancers are "sporadic," meaning they happen randomly. Some time after your birth, the cells in your breast will mutate and cause the cancer. There's no definitive reason, it just happens. For most women, there is a 12 percent chance that you will get breast cancer at some point in your life (or 1 in 8 women will have breast cancer, usually after you are older than 40). However, 10 percent of all breast cancers are hereditary, meaning that you are born with the genes already mutated because you received this mutated gene from one of your parents. The genetic mutations do not skip generations.

Hereditary breast cancers are usually seen in young women, that is women younger than 40. So if you are young, like me, there's a good chance you have a genetic mutation and that is what caused your cancer. You'll often hear about the BRCA 1 and BRCA 2 genes. Those are the big ones, but there are actually about nine different genetic mutations that research has found that can cause breast cancer. And there are likely more that just haven't been discovered yet. If you test positive for one of the BRCA mutations, there is a FORTY percent chance that you will develop breast cancer (again, 12 percent for most women). So even if you have breast cancer, get treatment, and beat it... if you are BRCA positive, it's almost 50/50 that you will develop a brand new breast cancer, not just a reoccurrence of the first one.

Those are scary odds. So it makes a lot more sense now why women who test positive for genetic mutations chose to have double mastectomies (like Angelina Jolie). Removing both breasts reduces your risk from 40 percent to 4 percent.

Sometimes family history can be an indicator that you are probably positive for mutation. My family history did not indicate that. The only reason I went in for genetic testing was because of my age. I was anticipating being positive, because why else would this be happening? Hereditary breast cancers usually happen in young women, and they are usually more aggressive forms. I checked all of those boxes.

Well.... it turns out, I am negative for all the genetic markers. On one hand, this is a HUGE relief because it means that I may be more likely to just have a lumpectomy and not the mastectomy! But on the other hand, it leaves me with no reason why this is happening to me at this age. If it's just sporadic, there's no reason, and it could just randomly happen again. That's almost more unsettling to me than a positive diagnosis. As a caveat, though, I may still have a gene mutation that caused it, but they just haven't discovered that specific mutation yet.

Some girls who test negative still decide to do mastectomies. I'm not sure where I stand right now. I don't ever want this to happen again, and I don't want to have to go through this. But according to my doctor, there's no huge statistical difference between reoccurrence in women who choose lumpectomies versus mastectomies (if they are negative in genetic testing). My surgery isn't until this summer, so I will definitely be working with my doctor on the best choice for me!

Echocardiogram

Around our house, we have been calling this test "Alexa." Why? Because we have a house full of Amazon Echo dots, and every time I said, "I have the Echo tomorrow," or whatever else, they would activate and it was annoying.

The echo was fairly straight forward, but mildly uncomfortable. They were just testing my heart function to make sure it is in good shape before I start the Herceptin infusions. Fortunately, my heart is in very good working order! I will continue to get echos done periodically to monitor my heart function and to make sure the Herceptin is not damaging the muscle.

Breast MRI & MRI Guided Biopsies

Okay... The breast MRI, this one was awful. In fact, right after the test I commented that I would be happy to NEVER do that procedure again... And if you like literary devices, you should start to sense some dramatic irony coming up...

I'm sure most people have seen MRIs on television shows or maybe you've had one before. You basically lay on a table inside of a tube and hold very,very still while magnets take images in slices and put them all together. Or something.

It sucks enough to have to be on your back and hold very still, but imagine having to be on your stomach, laying face down, a support bar in between your breast, and your breasts hanging down freely into a trough of sorts. Your arms are out in front of you, Superman style, your head is in a massage table head rest, and the table slopes down slightly. Most of you weight is being supported by your abs and on your stomach, and your feet/ankles are slightly elevated. I may not be describing the full torture accurately, but believe me when I say it is torture. Oh, and you're like that for 45 minutes.

The reason for this test was to see if there were any other suspicious looking spots in my breasts. I had already had mammograms on both sides and an ultrasound on my left breast. They didn't see anything, but because I am young and have denser breast tissue, mammograms can't always pick up everything. The MRI was to rule out any other potential tumors.

Just as I was celebrating that I wouldn't have to do that again, you guessed it, I got a call from the doctor saying they found three more "indeterminate" spots-- one in my left breast and two in my right. They needed to biopsy all three spots. "Okay," I thought. "My first biopsy kind of sucked, but wasn't too bad." But no. This wouldn't just be a regular biopsy. This would be an MRI guided biopsy. Meaning... I had to get back in that damn machine and hold that same torture pose. But this time, it was even more fun because they would be injecting me, cutting into me, and removing tissue samples as I had to hold still in that position the entire time.

I don't think I need to detail the full procedure, but let's just say I barely held it together during it. It was beyond awful. The doctor told me it is the absolute most difficult biopsy procedure that they do at the hospital. And there is no sedation, just local numbing of the biopsy sites. To further illustrate how awful it was, I will say (and I am not being dramatic), I would rather just have both breasts removed and reconstructed than to ever have that done again.

My biopsies were just yesterday, so I don't have results back on those three spots. I'm not too worried. I already have cancer, so it's not like it will be devastating to hear there are a few smaller spots that are malignant. Even if they are malignant, it does not affect or change my chemo schedule which starts tomorrow. These results will influence the extent of my surgery. If any of the spots on the right are also malignant, I may be looking at a mastectomy on that side. But that isn't for a while now, and the doctor anticipated they will be benign. We just need to know for sure.

Port Implant!

Yep, I was still (and am) excited about this one! I know I mentioned getting my port in the last blog and what it does. So I'll just share that I had the procedure done last week, and it went pretty well. I was able to be under "twilight sedation," so I was awake and breathing on my own, but was very loopy and kind of out-of-it. It was considered a minor surgical procedure and they made two incisions. The large one is where they implanted the actual port. the second incision up by my neck was to guide the small catheter through to a main vein.

The nurses were great and let me pick what music I wanted to listen to. I was hesitant to have them put on the kind of music I like to listen to, as it might not have been the best for the surgical team, but when pressed by the nurse what my favorite group was, I told them Nine Inch Nails and they put it on! As I started to fade out a little from the sedation, I got to hear 'Head Like a Hole.' It was pretty great.

The actual procedure (once they started the meds) was about 50 minutes. It felt like only 10 minutes to me! Afterward I was starving (I wasn't supposed to eat anything at least five hours before) and waited in a small recovery room where they monitored my vitals, and then it was time to go home.

This is the procedure that the info sheet stated I "may experience some discomfort." You think?? It was really painful for at least the first two days, and continued to be sore for a week. Even now, a week and half later, it's still tender and a little bruised. But the good news is that the port is ready to be used immediately, so I've already been able to have them use it on other visits instead of starting an IV in my arm. It's great! (Oh, and if you think I was able to use the port for my MRI biopsies as at least a small comfort...think again. They started an IV in my arm for that because the port wouldn't be accessible with me on my stomach/chest. UGH.)

Me right after getting my port implant!

Bone Scan and CT Chest/Abdomen/Pelvis Scans

All right. This one was a big day. It was a very stressful day because of some insurance stuff (my insurance originally denied one of the tests, sending me into panic and all sorts of stuff, and that was all happening while I was at the hospital trying to get these tests!). That is a big enough story on its own, so just know that my doctors appealed on my behalf, and everything was covered! 

These two scans were done to see if the cancer had spread to anywhere else in my body, specifically if it set up shop in other organs. Naturally... this was the most terrifying thing. It's bad enough to have cancer, but if it had already metastasized, it would no longer be considered "curable." 

I don't want to keep you in suspense, so I'll just say NO CANCER DETECTED ANYWHERE ELSE! Very, very, very good news! For once! Now, I still do have the lymph node involvement. We don't know exactly how many lymph nodes (the MRI did pick up several swollen lymph nodes, which means that they probably have cancer as well). But it still hasn't moved throughout the rest of my body, which is great! 1-3 lymph nodes that are positive still puts me at a Stage 2. Four or more would likely put me into Stage 3, but we caught it before it had a chance to go to major organs. Whew! But again, if I did nothing, it would spread. And would kill me. So I'm not doing nothing and chemo begins tomorrow! 

One anecdotal story to the CT scans is that I seemed to have had a delayed allergic reaction to the contrast dye they use. It's an iodine based dye and can cause reactions in some people. Other signs that you may be allergic to CT contrast is if you also have shellfish allergies. Well, I've been a vegetarian for 20 years, and even before that never ate shellfish anyway. So I had no idea about any possible allergy. Usually the reactions happen within an hour of receiving the contrast dye. But about 10 percent of people have delayed reactions. I just keep falling into the weird category of people who these random things happen. I'm still covered in a huge rash/bumps/hives sort of thing. My doctor isn't too concerned and I am just taking benadryl to get it to clear up. 

So that is it basically! Of course throughout this there has been a lot of resting and healing from the procedures and tests. The port implant had me mostly out of commission for about a week (just in time to heal up for the scans and biopsies). And there have been lots of phone calls with test results from all the doctors I have seen. I also shaved my head in preparation for losing my hair (that will have its own blog post). And all other life stuff and what not.

But we're moving right along. I've joked to some friends that I am looking forward to the simplicity of  5-hour chemo drips! The chemo will, of course, bring about a whole bunch of fun new side effects, but there's really nothing to be done about it. I'm ready to start it and just get this all over with, and I hope I'll be able to start feeling the effects it has on shrinking my tumor. 

So more updates soon!

A Battle Plan Is In Place!

All right! This post will be a pretty big one. In fact, it is huge! I talk about a lot of medical stuff, but try to explain things as best as I can. So here we go!

Treatment

On Tuesday I was able to meet with my new breast surgeon. And the appointment that I thought would only last about an hour ended up lasting for about four hours! But in that time I met with so many people and had a lot of information thrown at me, so I'll do my best to share what I know below. In addition to my breast surgeon, I also met with my new medical oncologist, nurse navigator, and nurse clinician. Everyone was so nice and really made me feel like I was their number one priority. And everything was so efficient! All the doctors came to us, they called and scheduled all my appointments for me, and my nurse navigator stayed with us until we left to make sure everything went smoothly.

The basic rundown is that I am starting treatment very soon. After a few additional tests over the last two days, I have been approved to start chemo! In fact, I just missed a call to start scheduling my infusion appointments, aka chemotherapy. My doctors' plan for me is to do chemo first, then surgery, possibly radiation, then more chemo, and following it all up with hormone therapy. The timeline for all this will be the entire year, maybe a little longer. The hormone therapy will continue for the next ten years. Yes, TEN years.

I still have three more big tests to do in the next week and a half-- a breast MRI, a full body CT scan, and a bone scan. These scans will be looking to see if cancer can be seen or detected anywhere else in my body. Pretty obviously, we do NOT want to see cancer anywhere else. If the cancer has not spread beyond where it is suspected to be right now, my cancer will be considered a Stage 2. My doctors' goal is to completely eradicate it and cure me! And obviously they think this is an attainable goal. It's just going to take a year.

Now if the scans show something else... we're talking about a totally different outcome. I don't like to think about that, so until I have these other test results, I am operating under the assumption that even if this won't be at all easy, it will be effective and I will be cured. Even though curing me is the goal, I do want to stress (and remind myself) that this cancer is still very serious. It is aggressive. And it is fast growing. But my chemo drugs, surgery, and other treatments should hit it pretty hard.

And how will they do this? Let's look closer at the steps of treatment!

Chemo and Surgery

Everyone has heard of chemotherapy, right? If not, just to review, chemo is a chemical drug treatment that is used to treat cancer. It is most often given in IV drip form. Sometimes it is a pill. In my case, it will all be given by drip. I will be taking a cocktail of four different drugs before I have surgery. A lot of breast cancer patients, if they need chemo at all, it is done after surgery. But because of my specific type, in particular the fact that I am HER2 positive, I need to do chemo before surgery. This is also known as neoadjuvant chemotherapy.

The benefit of doing chemo before surgery could be amazing for me. The drugs I will be on should shrink my tumor quite a bit, and my doctors think it may even completely disappear before surgery. That means that I will likely only need a lumpectomy! Even if the tumor goes away completely, they will still have to do some surgery to remove the area around the tumor and to make sure it's really all gone. The chemo should also shrink, if not destroy, the cancer in my lymph nodes. That would be amazing because then I will not have to have any (or as many) lymph nodes removed, which means I will be less likely to experience lymphodema later on.

Of course there is a caveat to all this in regards to just having the lumpectomy. Yesterday I gave blood to have some genetic tests performed. They will be testing me for certain gene mutations that have been known to cause breast cancer. Some of these genes also hold a greater risk for developing a new breast cancer later on. If I test positive for these gene mutations, I will discuss with my care team, but I will likely decide to have the bilateral mastectomy. That may seem extreme, but women who test positive for the BRCA 1 or BRCA 2 gene mutation have a 40% chance of getting a second breast cancer even after treatment for the first one. If I were to get the mastectomy, those odds would go down to only 4%. So you can see why I would opt to just have my breasts removed.

And what chemo drugs will I be on?

Taxotere and Carboplatin

These two drugs are the more generic chemo drugs I'm getting. I say "generic," but that's not entirely the correct word. These two are used specifically for advanced stage breast cancers, but they're generic in the sense that these won't be targeting my specific HER2 protein markers. The taxotere is used to interfere with the cancer cells' ability to divide themselves. The carboplatin is used to weaken or destroy cancer cells by damaging the cells' genetic material and makes it difficult for the cancer to repair itself and grow.

Like most chemo, these will come with some pretty bad and devastating side effects. The biggest one, or at least the most visible side effect, is that I will lose my hair. Probably all of my body hair. Chemo drugs target fast growing and fast dividing cells. Cancer just happens to be fast growing cells... but so are hair cells. So the drugs won't only just destroy the cancer cells, and that's why I will lose my hair. Other fast growing cells may be affected-- skin, nails, tongue, and mouth cells. With these two drugs I'll also likely experience nausea, loss of appetite, change in taste buds, heavy fatigue, nerve damage and neuropathy, and low blood cell counts. Sounds like fun, huh? One thing to note, though, is that the severity of side effects does not correlate to the effectiveness of the treatment. However, chemo side effects are accumulative; my first couple cycles might not be too bad, but the longer I get my infusions, the worse I could feel each time.

Herceptin and Perjeta

These are the two drugs that I am the most excited about! Okay, maybe not excited because I'm not excited about any of this. In fact, this is basically all bullshit, and it's bullshit that I have cancer, and fuck cancer. I'm trying to stay positive about it all, but I'm also really pissed off. So...

Anyway! Herceptin and Perjeta! These are going to be my miracle drugs. Herceptin has been around since the late 90s, but was officially approved in 2006 to treat HER2 positive, node-positive breast cancer. And just this past summer, the FDA approved the combination of Herceptin and Perjeta to be used for HER2 positive cancers. Studies have shown that women live longer and have the chance of the cancer coming back drastically reduced.

HER2 positive breast cancer is very aggressive (only 1 in 5 women will be HER2+), but these drugs are design to specifically target and fight it. Herceptin works by blocking the chemical signals that tell the cancer to grow. What's more, it sends a signal to the immune system to attack the cancer cells and eat them and shrink the tumors. Perjeta works to complement the Herceptin by attaching to a different   part of the HER2 receptor.

Before these drugs existed, the outlook for women who were HER2 positive was not good. The cancer almost always spread because it could not be stopped or controlled since it was so specific. But now the outcomes have flipped and it is almost better and preferable that I am HER2+! These drugs will basically be the heavy ass-kickers!

The side effects aren't quite as bad, mostly some brutal fatigue from the Herceptin. The other huge concern is that Herceptin can cause weakening of my heart muscles. Because of this, I will have to get echocardiograms every few months to monitor my heart. I had my first one yesterday to get a baseline. But my heart looks good and strong. It kind of sucks that I have cancer, otherwise I would be super healthy!

Length of Chemo

And how long will I be on chemo? Well, about five months initially. I will be getting all four drugs spread out over six different sessions, one session every three weeks for about 18 weeks, all four drug drips on the same day. However, I will continue to get an infusion of Herceptin for the entire year or twelve months total. Yep, I am in this for the long haul.

After the first round of chemo, I will get about a month break to recover and then I will have my breast surgery which is TBD about what kind I will have to get. That recovery can take about 3 weeks, depending on what I have to do. After that, I'll still have to go in for the Herceptin and I might need radiation. The radiation won't be determined until after the surgery, as is my understanding. My hair should begin growing back about four months after my last chemo session. Fortunately, Herceptin does not cause hair loss, so I can continue to take that and still get my hair back. All in all, I will likely see my hair begin to grow back in October or November.

My Port!

Okay, I am excited about this, but only because it is going to make my life easier. On Tuesday I am going to the hospital for them to implant my port. Also called a "venous access port," this will be a device that is placed under my skin (in my chest) that has a catheter threaded up through one of my large veins. Under my skin it will look like a nickel-sized bump. But through this port, they will be able to give me chemo, draw blood, give other IV fluids or medicines. So basically, I will not have to poked and stuck with needles and have IV lines started all the time in my arms or hand veins! For any friends that see me in the next year, just know it will be visible under my skin, so don't let it freak you out.

Hormone Therapy

In addition to being HER2+, I am also ER+, or estrogen positive. That means that estrogen is also slightly feeding my cancer. I have a low positive result, but it is still a positive and means that I should take precautions to not have an issue with estrogen in the future. As such, I will be taking a drug called Tamoxifen. This drug is in pill form (yay!), but I will have to take it every single day for at least 5 years, but my doctor said probably 10 years in my case. I will also need more frequent mammograms and screening for the rest of my life.

Wow... that's a lot isn't it? As I said, it's curable, but still a big deal and it's going to be quite a battle. When it's all over, I will basically have lost a year of my life to this. But as I've already said to some friends -- I'm losing a year, but it's a very small price to pay to be able to live the rest of my life.

And obviously this is not the end to my updates. Chemo is starting soon and before chemo I have decided to shave my head. So I will have updates about that, about some of my other tests, the chemo itself, side effects, and most importantly about how the chemo is shrinking my tumor and curing me! If you have any questions, please feel free to reach out (just, once again, be patient with response times... I have a lot going on). I'm getting lots of wonderful cards and gifts and each one is such a nice boost of positivity! So thank you! Until next time....

Imaging & Images

Imaging

I DO actually have a medical update, so I am just going to start off with that! Now, this isn't necessarily good news and it doesn't change anything about my diagnosis for the better, per se, but for once I had some tests done that didn't result in immediate bad news.

On Wednesday I got a call from the hospital and they said the doctor (that I am scheduled to meet with this week) needed me to come in for some additional imaging -- basically more mammograms of my left breast (which had not been previously done) and a few more of my right breast. They got me scheduled to come in the next day, so on Thursday I headed downtown to the hospital.

I'll spare you the details of the procedures, but they did about ten images on each side for the mammograms and then also ended up doing an ultrasound on my left breast. The mammograms at this hospital were way more painful than the ones I had done down in my hometown. So... OW to that. Not pleasant. But overall, the facility is really nice and I'm starting to feel better about having chosen Northwestern to receive my treatment.

So the sort of not really good news and not really bad news is that my left breast looks clear!! My cancer has obviously spread some because I do have lymph node involvement on the right side, but I have to admit I was pretty nervous that there would also be full-blown cancer in my other breast. But things look good on the left! The radiologist is recommending an MRI to fully confirm, though. That isn't a surprise because my other hospital said I would need one. However, this doesn't mean I'm "out of the woods" on needing a possible mastectomy on both sides, depending on how my genetic testing comes out. But still feeling good there's no obvious cancer right now! I'm also feeling good because since the doctor (who I haven't met yet) ordered these additional tests, it means he has reviewed my other pathology reports and my case, so he seems to be on top of things! That's reassuring.

Images

Now on to something fun! Warning: this section contains images of figure art drawings of me. They are nude. If this offends you, well, then that is silly because there are zero things that are offensive about figure art. However, if you are sensitive then just skip the rest of this post. Peppered throughout the story below will be the images. Thanks!

Artwork by Robert Apolinar
IG: robertapolinar.art

Finding out that I have breast cancer was obviously very devastating. Not only because of the fact that I have cancer and it's serious, but also because of the changes it will cause to my physical form. Now, I'm not a very vain person. I'm not super hung up on my looks or anything, but obviously I am a performer, in particular a burlesque dancer and also a figure model. A lot of what I do is based on my body. And it should obviously be noted that burlesque dancers and figure models come in ALL shapes and sizes, and all are beautiful and graceful and talented.

Artwork by Darick Maasen
IG: @darickmaasen

But throughout my career the one thing people have always commented on for me (as far as physical characteristics) are my boobs. I'm not going to lie or beat around the bush -- my boobs are huge. And what's more, they are huge and the rest of me is very tiny/thin. It's an odd combination and body type especially considering that my breasts are 100% mine and natural. In fact, I have been asked on a number of occasions by well-meaning friends and co-workers, "... are your boobs real?" They totally are. And they're great. When I was in grade school and junior high I was constantly made fun of because I was "sooo flat." I was back then, and now I'm not. And it's lovely.

I know my breasts don't make me a good performer or a good model. But they are a part of me and I'm really happy with how I look. So the thought of losing them (even with reconstructive surgery) just isn't something I like to think about right now.

Artwork by Ethan Colchamiro
IG: @ethancoal

After telling really close friends and family that I have cancer, I decided to tell the next circle level of friends all at once in an online message. And in that group of friends there were many people that I have met through art modeling, especially for the group Grotesque Burlesque. The group, otherwise known as GB, is an amazing gathering of artists who originally would meet up at one of the member's apartments to draw on a weekly basis. The models were often local burlesque performers, hence the group name. I was lucky enough to be one of those original old school models and I held (at least at one point, and maybe still do now) the record for posing the most for GB. Beyond being a model for them I have become friends with many of them over the years.

Artwork by Brit Thill
IG: @britthill_fineart

And this past year GB lost a very special member to cancer. Our friend Ed was the most positive person especially while facing this disease, and he (and his attitude) is my inspiration with how to deal with this and stay optimistic throughout my treatment. The loss of Ed was devastating to his friends and group members of Grotesque Burlesque. And I know to receive the news that cancer has struck yet another person close to group is unbelievable and another blow. (Members of GB and others are currently working to finish the graphic novel (Fucking Forty) that Ed started before he passed away. There will be a Kickstarter soon and I can't wait to share that information with you all!!)

But in true good humor and Ed-like positivity, I mentioned in my cancer announcement that if those in GB would like to see me naked and to pose one more time before surgery altered my body... well, now was the time! And the true heroes that they are, my friend Darick, and the other organizers, rearranged their model schedule (which is typically set six months in advance) and got me in that week!

Me (as Surge from New X-Men) and Darick
posing in front of his Artist Alley table at
C2E2!

Even though I was still bruised and sore from my breast biopsy that had taken place a week earlier, one week to the day that I learned I have cancer I took off my clothes, hit the stage, and posed for all the artists one more time... well, one more time with my body in its current form. They can't get rid of me that easily! And when everything is all done, I hope to go back and pose with whatever my body looks like post-treatment.

Artwork by Archangelo
IG: @thearchangelo

I love how my body looks and it's going to be a hard adjustment to have surgery and weight gain/weight loss and hair loss and whatever else will change me in an attempt to kill this cancer. None of it matters -- looks, breasts, hair, weight, whatever -- when I'm talking about my life. Staying alive and being healthy is the only thing that matters right now. But I have to say I'm really happy my looks could be immortalized one final time because I will miss the old me.

The art posted here is just a small sampling of some of the amazing work! If I posted it all, this blog would be huge! I've tried listing appropriate Instagram handles, etc. so please go check out these artists and their other work!

Artwork by Ali Cantarella
IG: @cantarella.ink