Why Taxol first?

Most of the time, when the Dr starts chemo, they start with A/C first and then do Taxol. It doesn't really matter which comes first, but they prefer to do A/C first because the Taxol isn't as hard on the body. Therefore, you are a bit healthier going into surgery.

So you may be wondering why we started with Taxol then. Well its because I had heart issues the week before chemo was supposed to start. In fact I apparently almost died. Awesome luck huh?

It was the weekend of Mothers day. I wasn't feeling too good. I had just had my port placed on Wednesday. Friday I started feeling bad. By Sunday I could barely walk 10 feet without having to stop and breathe. So Sunday night I went to the ER. After an Xray, a breathing treatment, and a few other tests and Dr talks, they told me I had early stages of bronchitis and they sent me home. Even though I still couldn't breathe. I went home and got in bed. I could only breathe while in my right side. If I laid on my back I felt like I was suffocating.

Monday morning we went to my primary Dr. She sent me to the ER via ambulance with super hot fire fighters. They admitted me and I went up to what was known as 2D floor, with a diagnosis of pneumonia. While there I got up to use the restroom and apparently my heartrate shot up to the 160s. The nurse rushed in and told me not to get up again. After that they transferred me to the 5th cardiology floor. I was there about 20 minutes before they decided to transfer me again to the 2nd cardiology floor for better monitoring. And I might mention I could only lay on my right side to be able to breathe this whole time. And it was still awfully hard to breathe still. And with each transfer I had to wear a mask. So I felt like I was suffocating.

The rest of my time in the hospital is kind of a blur. They ran a million tests on me. CT scan, well a few CT scans. Some scan I have no idea what it was called. Echo-cardiograms, EKGs. And I felt like a pin cushion because they weren't sure if my port was accessible yet since it was so new. Turns out it was, so I was poked and prodded for no reason.

After three days on the cardiology floor, they transferred me to the ICU. I thought nothing of it, just another room change. Apparently though I really was pretty bad off. My hubs thought I was going to die. As did the Drs. I have very little memory of any of my time in the ICU.

After a day there, they decided to perform surgery on me. The did what was called a Pericardial Window. They cut a hole in my chest,  took out that little piece of cartiledge at the bottom of my sternum, put a drain in my pericardia (the sac around the heart), and drained a soda can's worth of fluid out, about 300mls. The surgery was on Friday. Saturday they had me up walking around and transferred me back to the cardiology floor. My pain management was pretty bad. But by Sunday we had it mostly under control. I was taking 1 lap around the floor, and they had me try stairs. It was hard, but manageable. And they released me Monday, exactly 1 week in the hospital.

I took it easy at home. Going up and down our stairs as little as possible, as it tired me out. This little blip in the road delayed my chemo a couple weeks. And is the reason we started with Taxol instead of A/C because it allowed my body to heal from my heart surgery and what not. Its been a rough summer to say the least haha!

Man I feel like poo

This A/C stuff really takes it out of ya! I get my treatment on Thursday. Friday I get a neulasta shot (which is a shot to make my bone marrow produce more cells to keep my blood counts up). And Saturday through Monday I just want to lay in bed and forget those days. They really are that bad.

My body aches just to have a small touch. I feel like I have the worst flu ever. Totes sucks. Speaking of blood counts, my counts are on a roller coaster. The week of my first chemo, my platelets were at 450, White blood counts were at 11.1. The week after it was 350 and 3.1 respectively. Quite a drop. Especially since my platelets have not made it below the high normal range of 400 since they started taking my blood. And they've taken enough blood from me to keep a sparkly vampire happy for quite some time.

But ya know what else?! It is totes worth it. Because my tumor has shrank tremendously. It is still there. As is the lump under my arm. But they are soo soo soo much smaller! And that makes all the pain and ickyness worth it.

I am looking forward to my next treatment because it will be #3. Out of 4!! And we should start discussing surgery. Which at one point I had resigned myself to a bilateral mastectomy. But I am still so afraid of which decision to make still. It is so hard to make that decision. It was way easier naming my kids.  Why are boobs so hard to let go of? Aside from them being attached and all. Its hard to let go of the idea of never breastfeeding again. Never being "normal." The fear of looking like a 12 yr old prepubescent boy for the rest of your life. Needing surgery to look like a woman. Not having nipples. That one is really hard to grasp.  I always said if I ever got BC, I would just chop em off and move on. I never thought I would have to actually make that decision. Or at least have 20 yrs to make it. I never imagined being in my 20s and having to make such a big choice. All my choices in life had been easy, which college to go to, whom to marry, to marry even, when to have babies, what to name my sweet boys, all easy choices. Compared to what I am faced with now. Stupid boobs.

Which Cancer is what now?

Did you know there are different types of breast cancer? I didn't until April. So which do I have? The kind that is harder to treat of course.

My cancer is called Invasive ductal carcinoma. It is triple negative as well. What does that mean you ask!? Invasive means it is aggressive. It likes to spread fast. Ductal means it is formed in a milk duct. Carcinoma means cancer. Triple negative is the bad part (worse part?). It means it is not responsive to Estrogen, Progesterone, or HER2. But that sounds like a good thing right? Nope. It means they don't know what causes this type of cancer to grow. So therefore they don't have a clear cut way to make sure it stays the eff out of me when we are done. It has a higher recurrence rate. And when it comes back, usually it isn't in the breast. So basically it sucks.

They only really discovered this type of breast cancer about 10 years ago. So it is still relatively new. Which means they don't know how to really deal with it. So when you hear about breast cancer, and ways to reduce your risk, it does NOT apply to triple negative. In fact they believe that the more pregnancies you have, the higher risk you have of developing it. And I breastfed my first for 13 months and my second until about 6.5 months when I was forced to quit to fight this tumor. I'm young, which is also a risk factor for 3- cancer. And for some reason, it has a higher likelyhood of being found in African American young women. The highest rate of trip - cancer I read was from young women from Nigeria. Weird huh? I'll link articles later when I find them again.

But this is why I am doing neoadjuvant chemotherapy. (What does that big ol' word mean?) Neoadjuvant means that I am doing chemotherapy before they remove the tumor surgically so that we can see how the tumor responds to the chemo. Hopefully we will end up with a total pathological response (the chemo will completely kill the tumor). But at this point I would be damn happy with just partial pathological response. Talking to Dr. M last week we discussed continuing chemo after surgery. We most likely will, at try gemcitabine, which when said sounds a heckuva lot like Jim Bean. Which got us into a long discussion about what type of drinks we like. For the record, I could down a million Malibu and Pineapples because they taste delicious. In fact if I could find a bottle of Malibu that was alcohol free, I would be the happiest person EVER! Seriously, its that delicious. I could also be persuaded into drinking some B-52s. Kahlua, Baileys, Cream, um yum! What was I talking about? 

Nervous...Anxious...Scared...

Every feeling under the sun is what I've feeling.

I'm nervous that the A/C treatment won't work. I am nervous that the side effects will be brutal. How am I going to take care of my sweet boys if I can't  function.

Also, just fyi, and I din't know if this is how it is for everyone, but my armpit with the swollen lymph nodes, feels like it has been kicked by a steel toe boot. It a tender and painful and it sucks.

My older son starts school in 3 weeks. I am nervous that he is going to bring home the sniffles and because of my lack of immune, turns into the flu for me. Mothers of young children should not be allowed to get sick. Like we should get immunity for it for at least pre-school through 3rd grade. Its the least mother nature could do after putting us through child birth. Like a just pass go, collect $200 card.

I wish Thursday would just hurry up and get here. Where is life's FF button? Because it sure would come in handy right about now!

And I know this post is scattered full of random thoughts. But thats how my head is working right now. It is crazy.

Well...that sucks

I've been feeling down lately. In fact, I finally cried. Took a few months, but the tears finally fell. I don't know why, but the reality of it all finally hit me. It sucks finally feeling your mortality hanging in the balance. But I also have a reason to feel it hanging in the balance. I had another MRI done last Wednesday. My tumor had felt smaller and soft a few weeks into my Taxol treatment. But the last couple weeks it felt bigger and harder. So we wanted to check on it.

The news we got back was not so good. The tumor has not shrunk. In fact it has gotten bigger. And Wednesday evening, but right armpit was very tender. I felt it up and there is a new lump about the size of a golf ball. So now I have lymph node involvement. Yipfreakingeee. The MRI also showed it. I have got to be getting close to the bottom of the bad luck tree surely!

So what now? I had my last dose of Taxol yesterday. We are cutting it 1 week short. Both my oncologist and I feel that it is obviously not working. So next Thursday, I am starting the A&C chemo. I am incredibly nervous about this chemo. New side effects, new meds, back on steroids. I have all sorts of new anxiety now. But I feel this is the best thing to do. I've read how this chemotherapy is kick butt and will do the job. Hoping it will create a complete pathological response (in other words, the tumor will be dead when they cut it out). They have also upgraded (downgraded?) my staging. Its now 2b. Could be 3 depending on how many lymph nodes are involved.

BUT the good news in all this is that the cancer is still pretty much localized to the breast/armpit area. There were no other spots in my body. Silver lining right?

I HATE steroids!

When I had my very first chemo treatment, I had a reaction. I was just sitting there listening to my hubs talk to another patient getting his infusion. All of a sudden it felt like I had knives being shoved into my shoulders and in the small of my back. At first it was just a tingling feeling, but it quickly got worse. I reached over to hubs, said "get a nurse" and within a minute I had like 6 nurses, my doc, and hubs all standing over me. I was struggling to get a full breath in from the pain I was in. The nurses were administering tons of medicines to counteract the reaction and stopping the Taxol. And 5 minutes later I was all good.

My first chemo infusion was supposed to last a total of 3 hours, including blood draw, Dr visit, pre-meds, and Taxol infusion. We were there for 6. They had to start the Taxol slowly, and slowly increase it. Usually it takes 1 hour for it to drip in. They slowed it to 3 hrs. Man did I need to pee when that was over with!
But well, back to my point. Because of that, they jacked my steroid intake. It started out at 2.5 pills the night before, 2.5 pills the day of, plus 12mg of IV during. For two weeks. They changed it to 5 pills the night before, 5 pills the day of, and 12mg of IV during. I was on that for 6 freaking weeks! A total of 52mg of dexamethasone for 6 whole weeks. And it would have been longer had I not mentioned it to the PA during one of my visits.

One of the side effects of roids is swelling. I feel like the Michelin man I am so puffy. I haven't been this swollen since I was 8 months pregnant! Also, I am 90% sure, some of the blah I feel isn't from the chemo, but from withdrawals from the roids. I get it on Thursday and by Monday I always feel shaky, achy, and just completely wretched. But then Thursday, Friday, Saturday, and part of Sunday I feel fine. By Sunday evening, I start feeling like poo. And by Monday, well, lets just say another case of the Mondays just doesn't even touch it.

When this is all said and done, if I never have to take another steroid again I will be a happy happy lady!

Ectomy Schmectomy!

Ever since that call, surgery has been on my mind. Which one should I get? Which one will be better for me, for my family? I always said if I ever got breast cancer, I would just get a bilateral mastectomy and call it good. But that was before I actually got it. I thought I would be old. Or at least older. Not 25. Not still wanting to expand my family and breastfeed my babies. Its easy to say what you would do, until you actually are in that situation. I talked to my oncologist today. Dr. M. I asked him which surgery he would suggest, given my age and triple negative cancer, he said he would suggest a mastectomy. I knew that is what he would say. As an oncologist, his life is dedicated to getting rid of and preventing cancer. 


I also asked him what my chance of recurrence will be. This depends on a few things. How the tumor responds to the chemo (if its all dead or close to being all dead, or if there is still a large portion of live cancer cells), if my lymph nodes are affected, and if it has spread according to MRIs. All of this we will find out in October/November before and after my surgery.  If the tumor is all or mostly dead, there is no spread, and the lymph nodes are not affected, my chance of recurrence is 15%. If it has spread at all, lymph node involvement, or the tumor hasn't died, recurrence rate goes up to 50%. And from what I've read recurrence happens within the first 2 or so years. 


I know what surgery I have is up to me. But I need to choose which will give me the best rate of survival. I have two sweet baby boys and a wonderful husband to think of. I've thought of just having a single mastectomy, so that i could breastfeed our non-existent future child(ren). I know that sounds ridiculous, but nursing my children has been one of the absolute best experiences of my life. In fact, ever since my diagnoses, the only time I have cried about having cancer is when I had to wean Little W. And it makes me incredibly sad that I may never nurse again. If I had been diagnosed 5 years from now, when we were done having children, I would choose bilateral in a heartbeat. I would have done lots of things differently. I probably would have done the clinical study as well, but one of  the side effects is early onset menopause. I don't want to go through menopause at 25. I thought I had 20 years before I needed to worry about hot flashes and mood swings and mustaches. 


Another issue with a mastectomy is reconstructive surgery. I would definitely want it. Including nipple conservation or reconstruction as well. I don't want to go the rest of my life looking like a 12 year old boy. Going with unilateral mastectomy I feel I would look lop sided. I also don't want to look like the uniboob from Kung Pow. And also, with reconstructive surgery, how long does it last? Will insurance cover it? Will I need surgery again in 10-15 years? Every 10-15 years? And how does one pick a good plastic surgeon? Should I start reconstruction at the time of my surgery? Wait? This is all overwhelming. And it all sucks.