Radioactive Spider-Mona!

Okay, maybe this title isn't the best radiation pun OR the best comic book pun. But still. I tried.

Greetings! I know it's been a while since I updated last month, but I have been hanging out (and hanging on) and healing from surgery. The great news is that over the last couple of weeks I have really been starting to feel better, physically and mentally! The soreness and stiffness I described in my last blog post is almost entirely gone now. I still have a little bit of soreness/tension when I raise my surgery arm, but it's amazing what a few weeks have done. In particular, I started going back to dance a couple of weeks after surgery and the stretches and warm-ups we did brought back the full range of motion in my arm!

At my latest Herceptin infusion. I'm such a pro at this now. 

Of course, nothing can be perfect. While the initial physical effects have gone away (soreness, tender feelings, tension/lack of flexibility), I am still dealing with nerve pain or nerve damage. I am not surprised by this and was even expecting it. The feeling is very similar to what I experienced after my initial core biopsies. Basically, I will be sitting and feeling fine, and then all of a sudden I get this electric jolt of pain in my breast. And it isn't isolated to the area around my incision/tumor. It can shoot through my whole breast or present on the opposite side. It's weird. It's painful. And it's likely not going away anytime soon. The nerves that were cut need to heal and that just takes time. Maybe months. Maybe a year. So if you see me in person and all of a sudden I grimace or kind of grab my breast... that is why!

In other side effects, my fingernails are still complete trash. Only three out of my ten fingernails are okayish. The other seven have detached at least half way down for each nail. They look so gross and are a bit painful, especially if I accidentally catch them on something. I want to cover them with polish or some cool nail wraps (I have an order of awesome Espionage Nerd Manicure wraps coming soon-- Slytherin House colors!), but that's one of the things I am NOT supposed to be doing to my nails. My oncologist assures me that the nails will get better.

One of the worst side effects that has mostly gone away is my "chemo brain." For those who don't know, chemo brain, or chemo fog, is the condition that causes some cognitive issues with cancer patients. For me it affected my ability to properly form thoughts into words, or it made it so I had difficulty coming up with the name of something. My short term memory was affected, so I needed to make a lot of lists for myself and write everything down on a calendar. It also made it difficult to concentrate on things-- reading, playing video games, even watching certain television shows! Like for real... don't try watching Westworld when you're on chemotherapy! It's confusing enough when your mind isn't impaired.

It's a condition/side effect that doctors don't fully understand but are attempting to do more research on. I can tell you-- it is 100% a real thing. And it sucks. I still notice a few lingering issues. It seems like it doesn't fully clear up right away, and I am still on my immunotherapy infusions of Herceptin, which may be causing some issues. But overall, I feel like myself again. I could tell it was affecting me during chemo, but it was very insidious. And of course it got worse with each session, so I didn't realize how bad it was getting until it wasn't there any more. Having the chemo fog lift, it was like being reborn. I actually felt like me! I wanted to do things again, watch things again, play games again. Things that took actual thinking and processing were available to me once more!

But as I said, I still notice some lingering issues. So if you're speaking with me and I'm not quick on verbalizing something, or it takes a couple of tries, or I forget something and need you to tell me again, that's why and I'm sorry for that!

Radiation Therapy!

Some news about my next steps in treatment. I begin my radiation therapy in one week, on September 4th! Originally, I thought I would be getting four weeks of treatment, but as it turns out... I will be getting SIX AND A HALF WEEKS. Ugh. That's every single day, Monday through Friday, for six and a half weeks. What it boils down to is 33 radiation sessions.

The countdown has begun on our kitchen chalkboard.

Soooo... a bit longer than I was hoping for, but at this point my attitude is basically, "Oh. Six and a half weeks? Okay. Sure. I'm not dead yet, so whatevs." The side effects are different from chemo and, from what others have told, feel like a walk in the park by comparison. But there are still side effects. Mainly, incredible fatigue, supposedly unlike any that I have experienced so far. My new radiation oncologist (yes, there's a different oncologist for everything!) told me that for the first two weeks, I probably won't notice anything and may even wonder if they're doing anything. But after that, the side effects will kick in and will continue to get worse and worse. It will even get worse for a few weeks AFTER the treatments are over before it gets better.

Beyond fatigue, there will also be physical/cosmetic side effects to my skin. I have been told it will get red/tanned looking. There is also the possibly of developing sores and blisters, just like a really bad sun or skin burn. I was given a whole list of things and products to use and stuff that I shouldn't be using anymore! Once again, thanks to your extremely generous GoFundMe donations, I was able to pick up the first of my "Radiation Care Kits." New all natural deodorant, plain body wash, hardcore lotion/skin cream, painkillers, and a steroid skin cream. So, again, thank you!! This stuff isn't always cheap, but it is necessary for treatment.

Getting all my care supplies ready for the next part of treatment,
all thanks to your generous donations!!

The process of getting set up for radiation (getting the machine just right, my brand new awesome tattoos for alignment, special breathing "games") is pretty intense, so I'll leave that for my next update after I begin treatment. I promise it will be a more timely update, probably soon after I get through my first week in the linear particle accelerator!

Thank you for reading and keeping up with my progress. Always feel free to ask questions, or if you know someone who is going through breast cancer or was recently diagnosed and needs someone to talk to or ask questions to, please feel free to reach out!

Activating Extra Life, Doing a 1-Up to Cancer!

Hello! I have a lot of information in this post and also some *really* good news to share with everyone! But first, this message--

THANK YOU SO MUCH!!! To everyone who donated money to my GoFundMe campaign, shared the link, or have just given your emotional support-- THANK YOU! My goal was to raise about $200 to help cover the cost of parking for when I begin my daily radiation treatments. You all stepped up and raised OVER TWO THOUSAND DOLLARS! I honestly don't even know how to fully communicate my thanks, gratitude, and eternal gratefulness. Like, I still can't even (as the kids would say). Not only will we be able to pay for parking during radiation, but we don't have to worry about any parking costs for the rest of my treatment. And the extra funds will also help with all the costs insurance doesn't cover-- over-the-counter medicines, medical supplies, lotions for radiation burns, etc. Your generosity is overwhelming and I just thank you all so much. More personal and individual "thank you's" will come soon!

And with that, updates!

Keep reading, I'll explain this guy and his metaphor below!

Surgery

I had my surgery this past Wednesday, and it went as well and as smoothly as it possibly could! Leading up to surgery, it was a complicated mental and emotional state in my mind. Chemo had done its job and shrunk my tumor allowing for a lumpectomy, but knowing that tissue still had to be removed from my breast was scary. My surgeon couldn't promise or guarantee any cosmetic outcome, so I wasn't sure exactly what I would look like.

I know it sounds vain and what should have been the absolute least of my worries, but I was still concerned about what my breast would look like afterward. I mean, I'm a burlesque dancer and a nude figure model. And still a young(ish) woman. I want to look good! And more importantly... I just wanted to still be me. To look in the mirror and see the same body I've had for my entire adult life. All the treatments and chemo had already changed my body (complete loss of my hair, bad skin, weight loss, and so on) that sometimes when I look in the mirror now, I don't recognize that person anymore. She's not me, at least not what I want to look like, and I've dealt with a lot of low self-confidence with my appearance since starting treatment.

So not to ramble on and on (which I tend to do), I will just say that everything looks great, and I think once it is all fully healed I'm going to look just fine. There will likely always be a scar there and I can tell there's just a slight bit less fullness in the spot where the tumor was. But I think it will be one of those things where I will always notice the difference, but others probably won't. It would be nice to come out of this with no scars and no difference and try to forget any of this ever happened, but I know that's not possible.

Immediately after surgery in recover. Yeah, I'm still a bit out of it here...

I will say that my surgeon, Dr. Bethke in Chicago, is literally THE BEST breast surgical oncologist in the country, maybe the world, and if anyone is reading this who is wondering where to get treatment for breast cancer... go to see him. Immediately. I am beyond fortunate to be able to receive treatment at Northwestern and count my blessings every day that I have the greatest team of doctors around.

Recovery

Now that I am all done with surgery, my second worry was what would recovery be like and how quickly (or long) would it take to bounce back. Before surgery, the lovely information they gave me said I would be able to return to normal activities the following day and that I could even drive! Okay... so I've learned throughout this whole process that any sort of "estimate" of effects or recovery time they have given me has been laughably wrong. If they say I'll have "mild discomfort," that really means horrible pain. If they say I'll be up and about and driving the next day, that probably means two weeks on my butt in bed.

Well this time, I'm happy to say it was somewhere in the middle. My surgery was on Wednesday and the first few days were not pleasant at all. I certainly wasn't doing any driving and needed a lot of help getting up, making food, getting dressed, etc. And I was relying on some narcotic painkillers they gave me. But around Sunday-ish, I wasn't feeling too bad. I was able to take my dog for a walk, cook some meals, etc.

It's been almost a full week now, and I'm relatively good. I still have some major soreness and pain, but it's getting better. The worst isn't even the incision site, it's actually in my arm pit and upper arm where they removed my lymph nodes. When I lift my arm in certain ways, I have a pretty bad pain and super stiffness. It's like there's a rubber band in my arm that is too taut. I'm hoping some stretching exercises will help to increase my mobility in my right arm. And just like when I had all my original biopsies, I'm getting these delightful nerve pains. Just these electric feeling twinges that randomly happen with no warning or movement on my part. So... that sucks. But overall, I'm feeling pretty good about my recovery.

My recovery from chemo is also still ongoing. Unfortunately, several of my chemo side effects are hanging on for dear life. The newest side effect that didn't decide to show up until AFTER I was completely done with chemo and thought I was out of the woods-- changes in my fingernails. And not just "Oh, my nails are getting a little discolored or more brittle" changes. These are changes as in, "Oh, my finger feels like I smashed it in a door and broke it even though I didn't do anything to it... oh, now my nail a week later looks bruised?... oh, now my nail is bleeding out? That's cute... oh, now my nail is actually detaching and continuing to bleed a month later?" Yeah, it's super fun and I'm really excited about it! she said sarcastically.

But in happier news! I am now six weeks since my last dose of chemo and my hair is growing back!! It's still very thin and fine hair, but I'm starting to get quite a bit of fuzz. And fast! A week and a half ago, I didn't have anything at all, and now it seems to be growing quite quickly. It's going to be a while before it's my normal thick hair. But I like this new development!

BEST NEWS OF ALL

I had to save the best for last, right? I am very happy and excited to share that I received a call from my surgeon last night with my pathology results from the breast tissue samples and lymph nodes that were removed during surgery.

ALL SAMPLES WERE FREE OF CANCER CELLS!!

Prior to chemotherapy, I obviously had a huge tumor full of rapidly and aggressively dividing cancer cells (a grade 3 tumor, which is the worst). Those cancer cells had also spread to my lymph nodes (not good at all). During surgery, they removed four of my lymph nodes that all had evidence and signs that cancer had been in them. With that knowledge, based on my tumor size and number of lymph nodes involved, my cancer is staged at probably a Stage 3a (stages range from 1-4).

But chemo did its thing. It *really* did its thing. My surgeon said I have had what is known as a "pathological complete response." This is the best news and outcome I could receive. It means the chemo obliterated/destroyed all the cancer cells in my breast and lymph nodes. Studies have shown that women who go through neoadjuvant chemotherapy, are HER2+, and have "pCR" in both their breast and lymph nodes have the highest rates of disease-free and overall survival. In some cases, the percentages almost double!

A recent study showed that women who were treated with a HER2-targeted drug (like Herceptin) and had a pCR in the lymph nodes (so basically what has happened to me) had a ten-year overall survival rate (living with or without cancer) of 92% and a ten-year recurrence free survival rate (living without the cancer returning) of 89%! I really, really like those odds. You can read more about this medical study HERE.

So with this news, I've started to get over some of the initial "I'm going to die" shock and have moved on to "I'm probably not going to die, at least not this year." And that feels like a much better place to be mentally. I feel like I found the hidden 1-Up Mushroom and have gained an extra life for now!

(I have started a new hobby-- felting! And made this little guy to celebrate my new good news. More on felting in a later post.)

Extra life granted!

Next Steps

"But, Ramona, you had a pCR and all the cancer is gone and cut out of your body. No more cancer! No more treatment! You're like cured, right?"

Good question! No... I'm not "cured," as there isn't a cure for breast cancer. And I can't yet proclaim loudly that I'm cancer-free. In fact, I won't ever be able to claim that. The best I can hope to claim is that my body shows "No Evidence of Disease" or that I am NED. It's important to understand that being NED is not being cured or cancer-free, and it is not a guarantee that the cancer is completely gone for good or that I won't have a recurrence or that a new cancer won't develop. Doctors and researchers don't fully know or understand why cancers can seem gone or lay dormant for years or decades and then come back.

I don't mean to sound all "doom and gloom," especially in light of my super great news! It is good news, the best news! But the reality is I will always be dealing with this disease. And it's so important that those who haven't gone through cancer understand that. It really is more like finding an extra life in a video game-- sure, I'm good now. But that same Goomba might come back out of nowhere and take that life away at any moment. I just have to hope that if it does come back, I can find another extra life or just stay alive in the level for as long as I can.

Anywayyyy--- next steps for me! I still have to go through at least a month of daily radiation treatments! Why? I don't know. That's just the way it has to be! (See... I'm not NED yet, so still gotta get that sweet, sweet radiation.) And I will continue to get my Herceptin infusions every three weeks for the next seven months. It seems like I've come a long way since my diagnosis, but unfortunately I am still nowhere near being finished with my active treatments! Which is decidedly not fun to contemplate, but at this point I want to make sure I do everything I can to get to that NED designation!

Okay, I think I have gone on and on enough in this post! As always, thank you for your love and support and all of your positive thoughts, good vibes, and prayers as I continue on with treatments!

Goodbye, Chemo! Fundraiser! And Other Updates!

Hello, friends and followers!

I come to you today from my bed where I have been basically stuck since last week. It isn't quite as bad as it sounds-- previously, I had been stuck on my couch all day binge watching questionable 90s television shows (I'm not saying 7th Heaven... but I'm kind of saying 7th Heaven) and feeling miserable. Now I am doing the same thing (although currently my new show is Charmed), but from the luxurious comfort of my bed! Noah brought my old TV up from the basement, so I am all set to do some relaxing and recovering from our bed. Before I started treatment, we purchased a California King sized Purple Mattress, and it is wonderful and highly recommended if you are in the market for a new mattress or bed situation.

But enough about that! You didn't come here for reviews of bedding!

MAJOR MILESTONE ACHIEVED!

That's right! This past Tuesday, I had my FINAL ROUND of chemotherapy!!! It's been a long and miserable and torturous four months. I've had to endure the worst physical and bodily challenges I have ever faced, not to mention emotional and mental troubles. I have felt broken, ugly, worthless, useless. I've lost weight. I've lost all my hair. I've made emergency trips to the hospital just to be rehydrated because I could barely stand. I've endured needles and swallowing more pills than I have ever wanted to swallow. I've had sleepless nights from being in so much pain that I couldn't stand it and every muscle and joint in my body burned. At least at some point of every cycle I have said to Noah, "I'm done. I can't/won't do this anymore. I don't want to go back."

But I did go back. Every time, for every session. It seems like simple common sense, to just show up when they tell you for treatment. But many of my chemo nurses have told me that a lot of people don't show up. They don't come in for treatment. So just by showing up each time, I feel like I have accomplished something.

And what has 18 weeks of hell given me? Well, a lot of great news!

See Ya Later, Tumor!

Every cancer is different, and every breast cancer is different. Most women will actually have chemo after their surgeries. And not everyone needs or will benefit from chemotherapy. In fact, a groundbreaking study was just released about a special test breast cancer patients can have that will show them whether they will benefit from chemo at all! This test means that tens of thousands of women each year will NOT need to go through chemo because it has no added benefit for them or their survival. It is amazing news!! The test doesn't apply to me or the type of breast cancer I have, but so many women will now have the confidence to trust their care team when they are told chemo is not the best option.

So why did I have to go through chemo first? (Not-so) Quick recap!

I was doing what is known as neoadjuvant chemotherapy, or basically chemo beforehand. In my case, we jump back to what is feeding my cancer, specifically the HER2 protein. For women who are HER2+, chemo before having surgery can have many benefits. The biggest one is shrinking the tumor.

In my case, I had a pretty big tumor. When I had my initial scans and tests, my tumor was measuring in at 3.6 cm by 3.5 cm. For you math nerds, throw in some Pythagorean Theorem, and that's basically a 5 cm tumor. That's large. That's a tumor that was growing quickly and growing bigger each day. If you recall from past blogs, I could easily feel it. It was huge.

From the beginning, my surgeon told me that at the size that it was, I still could have been a candidate for a lumpectomy and not a full mastectomy. However, removing that much tissue would likely leave me pretty physically altered in my right breast. By doing special, targeted chemo first, we had a chance of shrinking the tumor down to make a lumpectomy easier and result in a better cosmetic appearance for me. Chemo would also hopefully stop the spread and growth of any other cancer cells in my body. We knew it was already in my lymph nodes, which was very concerning. I was willing to do anything to make sure it didn't spread anywhere else. Killing and shrinking the cancer in my lymph nodes before surgery would also hopefully limit the number of nodes I would need removed.

So blah, blah, blah, Ramona... what is the end result? Well, I am OVERJOYED to announce that my once 5 cm tumor now only measures 0.5 cm by 0.6 cm! There still may be a little tumor tissue left behind, but it is, for the most part, GONE! I am so happy. All of this hell and side effects and missing out on life and school and work and everything has been worth it.

Next Steps

What does this all mean for the next steps of treatment? Next up is surgery. Even though the tumor has mostly disappeared, I still have to have surgery. I had another mammogram and ultrasound a few weeks ago, and there do not appear to be anymore or new surprises in my breast (other than no more tumor). This week I am going in for another MRI to get even more images and just to make sure everything still looks okay on the left side. Because my genetic tests were also all negative for any breast cancer markers, we are planning on a lumpectomy. I was mentally preparing myself to lose my breast(s), but I am thankful that it does not look like that will be happening.

My surgeon will still need to go in and remove whatever is left of the tumor. Additionally, margins of healthy, cancer-free tissue will need to be removed all around the area. At the same time, he will also be removing about 3-5 lymph nodes that will need to be tested for traces of cancer. The hope is that I will only need a "one and done" surgery. However, once all these tissues and samples are removed, everything will be tested in the lab. There is a 10% chance that I will need to have an additional surgery to remove more tissue margins around where the tumor is or possibly more lymph nodes. This fact is the one thing that kind of sucks-- even with all the imaging and tests, my surgeon won't really know what is in there until he goes in. But he's one of the absolute best in the country and I have full faith in him. And while he told me he can't guarantee the final cosmetic result, he does promise that his goal is to go in and make it look like he was never there. And that's reassuring.

So, "too long, didn't read"-- chemo shrunk tumor, getting a lumpectomy, need a final MRI before I can schedule, hopefully only one surgery, and then hopefully can move on to next step of radiation! (I'll cover radiation in another post... I told you this treatment was no where close to being over, even with chemo finished!)

GoFund Me Fundraiser!

I'm mentioning this one last because I honestly hate, hate, hate asking for money. It pains me just even asking for help, like people coming over to make me lunch, but I know I have so many people who want to help and support me, and here is another way you can do so.

I am extremely fortunate in that my insurance seems to be covering all of my treatment. I have no deductible or maximum out of pocket. I've had a few scares where insurance has denied some things, but the hospital has been great about appealing and fighting on my behalf. So hopefully I can keep it that way and not have to see any medical bills.

One thing that is not covered, though, is the high cost of parking and transportation. Up until now, it hasn't seemed too bad since most of my visits are spread out. Validated parking at the hospital is $11 for seven hours. Not bad. And when I only have to go there once or twice a week, it adds up, but doesn't seem too awful.

Unfortunately, I will soon be starting radiation after my surgery. Radiation is different. Whereas chemo was once every three weeks with some appointments in between, radiation will be EVERY DAY for at least 4 weeks. The worst part is that the radiation procedure is very quick, only about 20 minutes. So even though I will be at the hospital for less than an hour every day, I still have to pay the $11. Multiply that by at least 20 days all at once... it's a big chunk of money. Over the past five months, we've probably spent about $200 on parking. This will be more than that all in one month.

I am not currently working, and I have some amazing friends, family, and mostly my partner who have been paying for parking when we go, but the prospect of that much in a short time is a lot.

So I am asking for help. My wonderful friend Erica set up a GoFund Me page for these costs! You can find it--

RIGHT HERE! 

My goal isn't much. Just enough to cover the costs of parking for my radiation treatments and then also as a reserve for the rest of my Herceptin infusions which will continue throughout all of this, every three weeks until March 2019. A donation of $11 pays for one trip. But any amount is helpful!! And everything adds up.

Again, I hate asking for money. Like... you don't even know. But I have been advised to just let go of that and to let people help who want a way to do so. 

So, in advance, thank you beyond words for your help and continued support! I still have a long treatment plan, but I'm one step closer. And still alive! Which is everything. 

Long overdue post! Chemo and cancer updates!

Hello, friends!

I am so, so sorry for the huge delay in blog posts and updates. I know the last one left off with my very first chemo session, and as of yesterday I just had my fifth chemo session. So if you're counting down at home, that means I officially have only one more "main" chemo infusion left. Sadly, since my chemo was just yesterday, it also means I still have to get through the next two or two and a half weeks of side effects from this one. So not even close to being really done. About another 4-6 weeks of bad feelings and side effects.

From my fifth chemo session yesterday!

One of the main reasons I haven't really updated is all the chemo side effects. It can get real bad, you all. Like... real bad. I have about 21 days in between each session. Of those 21 days, I get about 5 days where I am feel fairly normal or even "good." Well, as good as I can feel at the moment. When I'm smack dab in the middle of the worst side effects, I don't have the energy or mental capacity to make proper updates. And when I'm in those "good" days, the last thing I really feel like doing is writing about how badly I have been feeling. I try to use those good days to see friends, hang out, get out of the house, dance, and just generally do fun and normal things and try not to dwell on how bad stuff is about to get again once I go back to chemo.

And remember the "accumulative" effects I have mentioned in the past? I'm starting to finally get exactly what that means and how it is translating in my body. Each session, the side effects are just a little bit worse and start just a bit sooner and last just a bit longer. Starting with my third chemo session, my GI issues really became a problem. I don't want to go into too much graphic detail, but let's just say I managed to lose a lot of fluids and got myself pretty dehydrated. This episode sparked an emergency trip to the hospital around day 12 after my third chemo. I was given a bag of fluids to help with hydration. Blood tests also confirmed my electrolytes, specifically potassium, were low, so I also received a two hour drip of potassium. All of that did help out a lot! But it was still an unplanned four-hour trip to the hospital. And then again after my fourth chemo session and a few weeks later, I found myself in the same situation-- dehydrated to the point where I could barely stand. My mom took me back to the hospital for more fluids.

I'm already anticipating that I will need to make another fluid trip at some point during the next week or week and a half. My doctor even asked if I just wanted to pre-schedule a visit for fluids. It was tempting, but since I don't quite know when I will need them, I will just have to call when I do. The first time was day 12; and the second, day 9. But the hospital is always very accommodating and happy to get me back on my feet, as it were!

So those are just some of the things I've been dealing with the last three months. I will be so happy when I am done with this phase of treatment. Not that the rest of it will be a walk in the park either. But chemo is, I hope, by far the worst of what I will experience in side effects and feeling sick. Again, I hope! My final session is schedule for June 12, so I will officially be done with the Taxotere and Carboplatin drugs (the ones that made my hair fall out... and all the other really bad stuff), and I will also be done with the Perjeta. I will still continue to go in every three weeks until next February and receive infusions of the Herceptin.

Yep, I'm totally bald now.

And Now For Some Good News!

Just an update on the Herceptin front, it is 100% doing what it was intended to do! Quick recap-- Herceptin is the drug that specifically targets the HER2 proteins in my body that have been feeding my cancer and made that tumor grow to be almost 4 cm. The Herceptin binds to the proteins and blocks them from causing the cancer cells to multiply. Additionally, it triggers my own immune system to come in and destroy the tumor/cancer. Well, within a WEEK of starting chemo, I noticed my tumor seemed to be smaller, certainly less prominent. Remember, I found this tumor myself. It was incredibly large and not difficult to miss.

I am so happy to say that after three months, I can no longer feel anything and my oncologists also cannot really feel the tumor!! Each session it has gotten smaller and smaller, which was the goal from the beginning-- to basically shrink it down to as close to nothing as possible. Once I am done with chemo, I will likely have another MRI and/or mammogram to confirm its new size and to really get an answer as to how well the chemo has been working. Since this is the whole reason I was doing neoadjuvant chemo to begin with, I am so happy the results look good!

Also in the realm of Herceptin, one of the potentially awful side effects is weakening of my heart muscle. You may recall that I had to have a baseline echocardiogram performed before I started on the drugs. Well, I just had my first follow-up echo (I will continue to go once every three months), and there has been no change to my heart function or muscles. More good news! Hopefully we can keep that up. I still have another nine months to be on Herceptin, after all.

Next Steps

Finishing chemo will be a huge milestone, but I'm still no where near being done with my treatment. Next Tuesday I will be going in for my surgery consultation. I'm not sure exactly what all that will entail, but I suspect we will discuss exactly what kind of surgery I will be having and hopefully will get it scheduled, likely for sometime in mid-July. Since my genetic tests were negative for any breast cancer genes (at least the ones that they know about and can test for), I don't automatically need a mastectomy. And since the chemo drugs have been obliterating the size of my tumor, it is extremely likely I will only need a lumpectomy!! I am happy about this. They will still need to cut out any remaining tumor and the margins around where the tumor was (even if the tumor no longer exists). Which means I will still be scarred and my breast is not likely to look like it does now. That makes me incredibly sad, but I still need to do whatever is necessary to fully treat myself.

The other big treatment I will need to go through is radiation. If I have a mastectomy, I will not need radiation because all of my breast will be removed. However, with only a lumpectomy, the rest of my right breast tissue will need to be treated, just be make sure no cancer cells remain. Radiation means I will need to go to the hospital EVERY DAY for 4-6 weeks. Just when you think you're done... I'm not looking forward to surgery or radiation. But I want to have the most aggressive treatment since this is a very aggressive cancer.

I will know a lot more after Tuesday and I promise to update once we have more of a plan and schedule in place!

As always, thank you to all my friends who have graciously stepped up to come over to our house to help take care of me, take me to the grocery store, have stopped by on breaks to walk my dog, have driven me to the hospital, to those who have sent me cards and postcards and mail, for all the encouraging messages online and through text messages!! I really appreciate it. Everyone is an amazing support system, and I will be forever grateful.

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....