Thursday, April 25, 2013

The Devil You Know

Is the devil you know more of a threat than the devil you don't know?

I make it a point to know everything, and I mean everything, about everything that is happening to me. Let me be clear, only things that are happening to me do I know everything about. If you asked me about politics, world events, or who the contestants are on Dancing with the Stars, I'd give you a blank stare.  But if I'm going through it, I get a damn PhD.When I was trying to conceive for almost a year, I read everything I could about fertility and how to get pregnant. I could have been a fertility specialist. When I was pregnant, I knew everything there was to know about pregnancy. I read tons of books, spent hours on the internet, joined groups of expectant mothers and learned a lot from them as well. I could have been an OBGYN. This summer when I had a board meeting with the 20+ medical providers caring for my dad, the head of the ICU said "What is your professional background? You have so much medical knowledge." I told him I graduated with a degree in hypochondria at the school of WebMD. Needless to say, you can bet your ass that when I learned I had breast cancer, I did more research in two months than I ever did in 4 years of college. I am fairly certain that I have reached the end of the internet in regards to breast cancer. There are pros and cons to this. The pros are that I know what I'm dealing with. The cons are that I know what I'm dealing with. There are women in my survivor group that are in the early stages of their diagnosis and have said they prefer not to know the details of their cancer, their stats, their prognosis. Ignorance is complete bliss. I know this. But every time I try to ignore a burning question that's in my mind, it eats at me, it keeps me awake, and I have to do research.

So right now I feel like I know this cancer pretty well. This cancer that's probably been in my body, unknowingly, for 10 years. I've met with my surgeons, oncology, and radiation oncology. They all have had a meeting, called "The Tumor Board", which sounds creepy and disgusting to me, to discuss my case along with the pathologists. Here is what I know from all of these people:

1. My tumor margins are clear! There was originally some question about this but it looks like when the plastic surgeon finished up his job after putting the tissue expanders in, he took more skin, and that tested negative for any cancer. So the good news here is that I wouldn't have to go in for more surgery to get better margins around the incision site.

2. There were microscopic cells in my sentinel lymph node. This was the lymph node declared negative in the OR but I was prepared for this kind of thing, because when they get into more detailed testing, they often find small amounts of cancer cells. A micromet is considered to be between 0.2mm and 2.0 mm of cancer. My question for the tumor board was how big was the micromet exactly. The answer is 0.3mm. Had it come in under 0.2mm, it would be considered an isolated tumor cell which is considered node negative. Unfortunately micromets count as lymph node positive but there have been studies to show there isn't much of a difference in prognosis between having them and being lymph node negative. The other 4 lymph nodes removed were negative so there is no need to go in and remove more, the tumor board decided. So while I was hoping for completely negative nodes, this really isn't that bad.

3. My tumor really was 4.5 cm. What. The. Hell? Tests going into surgery (ultrasound and doctor's manipulation) estimated it at 2-2.5cm so this was one giant surprise. It sure didn't feel that large to me. This is the most depressing thing about my diagnosis so far. Larger tumors have a worse prognosis, especially when they are grade 3 (aggressive) like mine. Guilt comes into play here too. If it were that big, why didn't I find it sooner? I feel a lot of responsibility in regards to this matter. I thought I was familiar with my body but I guess I really wasn't.

4. There was no lymphovascular invasion identified in pathology. This is really good! It means that, in the blood and lymphatic channels in the tumor sample, they did not detect any cancer cells! There are other ways for cancer to spread throughout the body other than the lymph nodes and the blood stream is one of them. So this not being identified is a very good thing. It is incredibly shocking to me that a tumor of my size and grade did not have this kind of invasion and only had micromets to 1 lymph node. But I choose to trust pathology and am going to assume my tumor enjoyed being fat and happy in my breast and didn't want to move on elsewhere.

5. My stage is 2B. This is still considered to be early stage breast cancer. Because of my age, they will throw everything at me since I have a lot more years to live than the average 60 year old diagnosed with breast cancer.

There are all kinds of tools on the internet to predict survival rates at 5, 10, 15 years post diagnosis for breast cancer patients. Some are limited to health care professionals only. I'm not going to lie, according to the breast cancer predictor tool used by oncologists all over the country, I am known as a health care professional (in training of course, so the tale wasn't too tall). These tools vary with how detailed you can get about your specific case. The lovely bar graph my oncologist gave me about my 10 year survival made me want to throw up. I think that was part of her plan to get me to agree to all of the therapies they were recommending, so that the green (good) part of my bar graph would grow. A more detailed tool online called Cancer Math, gives me a more favorable prognosis after I do all the required therapies at 15 years after diagnosis (85% 15 year survival rate). I'm so focused on these statistics and numbers despite the fact that statistics was my least favorite class in college and I had to take it twice. Eric reminds me that my stats are either 100% or 0%, I can't be 85% alive. I either survive this cancer and live a normal life span or I don't. I am sure as hell going to make sure I do everything I can to fall into the 100% survival category.

That said, breast cancer has no cure. I will never be considered cured, especially since I have estrogen positive breast cancer which can recur up to decades later. Some doctors will tell a breast cancer patient that if they die of a stroke at age 85, then they were considered cured. This is the hardest piece of information that breast cancer patients have to live with and many suffer from post traumatic stress disorder because of it. The best that you hope for is to be considered evidence of disease. I hope and pray every day that these aggressive, poisonous treatments will keep me NED until I'm an old lady!

Today I received my Oncotype Dx score! A company called Genomic Health does an in depth analysis of 21 genes that make up your cancerous tumor and gives you a score. The score puts you into a category of low (no benefit from chemo), intermediate (unsure of chemo benefit), and high risk (your ass better do some chemo). The scores are from 1-100 but from everything I've read, people rarely score over the 40's or 50's. I was sitting in my appointment today with the research nurse, signing my body over to science, when I saw that my nurse from the breast center was calling. I knew it was about the Oncotype score so I was dying inside. Luckily, the breast center nurse checked the computer and sent a text to my other nurse letting her know my score. 23!! So I was thrilled because I was prepared for them to tell me that I'm the first person they've ever seen with a score of 82. So what this means is that 23 is in the low end of the intermediate category and they don't really know what my benefit will be from chemo. It does say that based on this score, I have an average distant recurrence rate of 15% (range between 11-18%) after taking 5 years of tamoxifen as my only therapy after surgery.  Because I'm in that gray "intermediate" zone they can't tell me how much more chemo will reduce this risk and it's up to me and my providers to make the decision. Well, we've already decided I'm getting the works, so I have hope that the chemo and radiation treatments will help bring this score down to below a 10% chance of distant recurrence. My tumor is a grade 3 which means it was rapidly dividing and chemo works best on rapidly dividing cells so I like to think chemo is going to kick some cancer butt! Other good news is that despite all of the aggressive factors about my cancer, the score came back on the lower side which ultimately means that I should get a good deal of benefit out of taking hormonal therapy. The standard is 5 years but my oncologist already told me she will give it to me for 10 years, as recent studies have shown additional benefit when taken longer. Plus there is always the option of ovarian suppression or removal to reduce my estrogen levels even more and then, since I will be considered post menopausal,  I can switch to an aromatase inhibitor which is even more effective than tamoxifen. So anyway, I'm feeling pretty good about my score, because it was based on MY cancer and tailored to me, not some application on the computer where I plug in a few numbers. I'm also now feeling good about my choices to do chemo and radiation before I start my hormone therapy so that I can be sure I'm giving it all that they've got.

Today I went for an EKG and an echocardiogram. Both were uneventful. I also got a CBC and comprehensive metabolic panel done and hopefully the results of all of these tests are normal so I am cleared for my first "infusion" next Thursday!

Tomorrow morning I go for my port placement. For some reason this scares me more than my bilateral mastectomy.  I guess because for some reason I looked at a bilateral mastectomy as a larger scale mole removal which was my only medical procedure reference to date. They were basically going to dig out those boobs and sew them back up. Easy peasy. I'm a little freaked out because tomorrow I will not be under general anesthesia and they will be placing this thing under my skin and jamming it into an artery. It just seems so invasive. However, they did say that I will be placed under conscious sedation, or "Twilight" anesthesia. I don't know what that means but I really hope Edward and Jacob are there. This will take place tomorrow around 8 am. Prayers are appreciated for a smooth procedure!! 

Oh and I learned how to put pictures in my blog which is like super advanced computer programming stuff in my mind so here are a few pictures of me wigging out this week.

An expensive "real hair" wig:
 I'm a ginger!:
 Old lady with attitude!

Wednesday, April 17, 2013

The Kitchen Sink

Yep, it looks like I'm getting the works. The good old trifecta. Surgery, chemo, and radiation. Then hormone therapy for probably 10 years with possible ovary removal. At this point I want them to take anything out that makes cancer fuel (estrogen) and hell, anything that isn't really needed anymore so at least I can't get cancer of those things too. So by all means yank the uterus and everything else in there as well. Anyway, I can't really go into my treatment plan yet as its not finalized because I'm still debating on participating in a clinical study. Believe it or not, the Pharma rep is probably more gun shy about clinical studies than the average patient as we have seen several promising late stage studies fail. But this one is with a drug that actually works, a celebrated "miracle drug". It's just not a drug currently indicated for my kind of cancer. So will it help? That's what they want to see. I'm currently weighing the risks and benefits, both sides feel heavy, and I'm not supposed to be lifting over 10 pounds. Either way, chemo will start in the next few weeks and I get my port in next Friday. That's considered an outpatient surgery and I get to have the "glass of wine" infusion again so I'm pumped. I stopped drinking so these are the things that thrill me. Everyone tells me chemo is do-able. I'm not sure what that means. I used to consider myself do-able. When I had boobs and long blonde hair.

Quick moment of vanity-did you know most people gain weight from chemo??? I read something like an average of 28 pounds. What?! I can't even have the silver lining of looking like a skinny cancer patient?? When I read that cancer treatment was like pregnancy-an average length of 9 months, I guess time wasnt all they were talking about.

 I will leave you with things to NOT say in your life if you want to avoid breast cancer that were actually said by me:
1. "I don't think I have to worry about breast cancer."
2. (After breast feeding and yes, this was a wrong assumption) "If I ever get breast cancer my boobs are so saggy, I will catch it just by looking in the mirror."
3. "I really want to know what my natural hair color is."
 4. (This was Eric while massaging my head pre-diagnosis) "Your head feels so lumpy, I want to see what it looks like bald." Watch what you wish for!!

Wednesday, April 10, 2013

The 5 Stages of Grief

They are as follows: 1. Denial 2. Anger 3. Bargaining 4. Depression 5. Acceptance They say that you don't necessarily have to go through them in the order they are listed. That has been true in my case, as depression was definitely stage 1. I will never forget the despondency I felt that weekend after learning that I had cancer. It went hand in hand with being helpless. From February 12th, the day I found the lump, until March 22nd when my surgeon removed my breast, all I could do was sit there and let that cancer grow and feed off my womanly hormones. I made dietary changes to not take in substances to increase estrogen and consume foods that naturally lower estrogen, but other than that, the cancer had the control. How freaking depressing. I guess along with that came stage 3, bargaining. My prayers certainly have a bargaining aspect to them. "Please God let me live a long life, beat this and have it never come back. I promise I will help other women, share my story, try to save others from this disease." I hope He thinks it sounds like a good deal. And then came the final stage, acceptance, at a pretty early inning in this game. Never once was I in denial about what was happening to me, maybe because I knew it always would happen in some way. Creepy story...I have this fleshy mole on the side of my head that's kind of like a big skin tag. I hate it but my hair covers it. But often over the years I would think "I gotta get this removed before I have to do chemo and lose my hair." Seriously, who thinks like that?!

 Anyway, right now I'm in stage 2 in full force. I'm majorly pissed off. And it couldn't come at a better time. I'm past the 5 week period of waiting and being helpless, I'm past the lying unconscious on a table while surgeons sent from God give me the best chance of getting my life back. Now it's time where I get to join the fight. I have a say in my treatment plan and I say go hard, give me the best stuff you've got. And when the poison goes into my veins, I will enjoy it. This poison will make me ill but it will obliterate any stray cancer cells that might have made it past the breast and that one lymph node. This will all be positive. Chemo is not a dirty word. Don't be afraid of it on my behalf. I WANT IT. I WELCOME IT. And please understand that going through chemo is not what it was in the movies in the 1980's. The meds they give you are great these days and plenty of people get away with no nausea and just a bald head and extreme exhaustion. Hopefully that's me, I love naps. And please understand that by me going through chemo does not mean I'm dying of cancer. In the majority of breast cancer patients, the cancer is gone after the surgery. The chemo is the insurance policy to reduce the chance that it will come back. When breast cancer comes back, they usually mean distant recurrance, in the bones, lungs or liver. That is why it's important to hit it hard your first time facing it because the second time might not turn out so well. So right now I consider myself cancer free and everything I go through going forward is just things I'm doing to insure that I live a normal lifespan.

 But damn, I am angry, I am livid. Right at this moment, I hate you cancer. I hate that you will steal 9 months of my life to treatment that will make me feel ill. I hate that you make me question if I will live to an age where I get to meet my grand kids. I hate that you took my breasts (even though I know my next set will be bigger and better), I hate that you will take my hair even more so. And the number one thing I hate about you is how you have interfered in the grieving of my father. I hate that days go by that I don't cry over missing my dad because I'm so preoccupied with my own mortality. How dare you take away the attention that grieving him deserves in my life so that I can grieve over YOU? How dare you!? But now I get to fight. An angry Jenna mixed with intravenious poison is a potent cocktail. Cancer can have 9 months to preoccupy me, bring hardship to my life, but that's it. After that, I'm taking back what is mine. And then, after it's said and done, the hate will be gone. And cancer, I will love you. I will love you for making me realize the small stuff isn't worth sweating, I'll love you for every woman that realizes that if it can happen to me, it can happen to them, and they do a breast exam. Or they ask for a mammogram even though they're "too young for cancer." I will love you for allowing me to help another young woman diagnosed not feel so alone. I will love you for letting me be a source of hope to the newly diagnosed. Lord knows, I have had plenty of those angels in my life. So at this moment, I hate you, and I'll fight you. But then I'll slap your hand, say good game like you do to the losing team, and hopefully never see you again in a rematch.

Thursday, April 4, 2013

The Healing Process

It has been almost two weeks since my surgery and I'm happy to report that while I'm in constant annoying discomfort, I am able to get around and have a semi-normal life right now. Before surgery I pictured the 4-6 weeks of healing time they estimate for this procedure to be a time of me permanently planted on the couch, knocked out by drugs all of the time. And that was definitely how I would describe the first 5 days. But on Good Friday, I was able to head to the UPC Plastic Surgery clinic and get my drains out. Good Friday, indeed! Drains typically stay in for 1-2 weeks, until the total day's output of fluid in each drain is under 30cc's. So I was happy to be on the short end of that spectrum and able to get them out in a week's time. I was very prepared for this procedure to hurt but really surprised when it didn't. What was shocking was how far up into your body the drain tubes went. The nurse told me to take a deep breath in and then exhale as she pulled them out. It didn't hurt me at all but the feeling of this thick tube making its way down from right under my clavicle and out of my side made me completely queasy. That however was not as bad as the removal of the pain ball wires that went into my chest. A pain ball is a cool little fanny pack type bag filled with a plastic circle that has what looks like a breast implant inside it. That "implant" is filled with a Novocaine type numbing agent that goes directly into my chest via little wires. The wires are wound up in a tight circle and taped to my chest so that it can't come out. I was instructed to remove this myself (!!!!) after three days when I was able to see that the ball was all out of fluid. Of course Eric removed it because I'm a wuss and he loves gross things so he removed the tape and started to pull the wires which we were told would just slip out. OMG, those suckers were in there practically up to my neck and the feeling of metal wires sliding down over my sore chest muscles 3 days after surgery had me screaming to Eric to "make it stop!!" and he's yelling "Jenna, just don't look!!" It's funny now that it's over but damn, that sucked. Oh and then there was the middle of the night vomiting two days after surgery that accompanied a low grade fever. The breast clinic and plastic surgeon's offices were called and they all agreed it sounded more like a gastrointestinal bug rather than an infection. After putting two and two together I realized that it probably wasn't the best idea to eat Outback's Ahi Tuna appetizer two days after a major surgery when you're immune resistance is down. I'm pretty sure that was my first case of food poisoning. Other than those exciting events, it's been a lot of laying on the couch, reading, eating all the delicious food brought to us by friends and neighbors, and getting yelled at by Eric for attempting to do too much. Eric, by the way, is a pretty good nurse. He was awesome at keeping me on a med schedule and always emptied my drains for me. My mom spent a lot of time here playing with Harper so Eric could take care of me and my mother-in-law also watched Harper so both Eric and I could have days of rest. And the best part of this whole surgery deal was that the dogs have taken a two week vacation to the Canine Clubhouse, Sadie's house, and the Lawson's house, so that I could rest and heal without dirty dogs jumping on me and needing to go out 50 times each day. Unfortunately, they come back today. Did you ever think I'd say such a thing? I had my first follow up appointment with the plastic surgeon yesterday and he said that things look like they are healing well. He was planning on "expanding" me yesterday but I nixed that idea quickly when I told him how much discomfort I still had from the tissue expanders. So I get to go back on 4/18 for my first tissue expander fill. They will shoot a needle into my "foob" and fill it with 50-100cc's of saline. At surgery I was filled to 150 cc's and our goal is to go to 500 cc's unless I decide I want to be a big boobie ho and fill it to 800 or something, which they said they can do as well. Go big or go home right?! The cool thing about these terrible tissue expanders is at least you can gradually see the size change until you find a size you are happy with. They like to do the implant exchange no sooner than 4 months after surgery. So if I do not need chemo, in about 4 months I will have my new reconstructed rack, if I need chemo we will wait until that's over so that I'm not subjected to a surgery while my body is weakened by chemotherapy. I have a goal to be physically whole again by Christmas time. All I want for Christmas is my new fun teets!!

 Now to the serious stuff. My follow up with the breast surgeon is next week on 4/10. That is when we will hopefully have the final pathology report and hopefully the Oncotype score which will give me an answer on if chemo will be a benefit to me for my type of cancer. I'm praying for the final pathology to not have any surprises and for a low Oncotype score so that I won't need chemo. But at the same time I want chemo. Who says that? Whatever happens, I want to do whatever I can to reduce the risk for recurrence to the lowest percentage possible. So whatever Oncotype score that is mixed with whatever treatment they recommend is what I want for myself. The only thing we know currently is that I will take Tamoxifen orally for 5 years, and if I have it my way, probably a lot longer than that. This cancer crap puts us in a situation where I will unlikely ever get to become pregnant again. There is the possibility of extracting eggs for the use in a surrogate but the steps that you have to go through to make the eggs viable involve pumping me filled with the same hormones that feed my greedy little cancer. So I'm not willing to do that. Since I will need to take Tamoxifen for 5-10 years (maybe more if evidence proves beneficial) to block my estrogen, I cannot get pregnant while on this medication. So Harper may be, like myself, an only child. This isn't what we wanted for our family but sometimes, this is the plan. She truly is everything I have ever wanted and more so my longing for another child isn't as severe as it could be. I do still get baby fever when I see newborns as we were going to start trying to have a baby pretty soon, before my cancer diagnosis happened. We never thought too much about adoption but that is an option we can look into as well. Part of me wants to kick cancer's ass and feel that my risk of it coming back is low enough so that I can confidently welcome another child into my life, knowing I'll be around to see him or her grow up. Again, thank you for your prayers, cards, and kind gestures! All the support has given me more strength than I ever knew I had. I'm amazed at what I can handle now. And to everyone who ever hears the C word in their life, it will rock your world at first. But then it will become just a part of your life and you will adapt. And there will be times when you realize you're happier than ever. After a cancer diagnosis, how is this possible? It just is. And while cancer was always my biggest fear, it happened, I'm facing it, I'm gonna beat it to a pulp, and that makes me pretty damn happier than ever.