I'm baaaaaaaaaaaaaack!

And, so is IT. Yep, the cancer. It's back. 

Sorry for the abruptness of this blog post. I figured ripping off the band aid is better than prolonging the agony. I've been going through some medical testing for a bit, and it's been recently confirmed. 

Some back story: I hadn't been feeling great for a while now, but with all of life's circumstances in the past year (for those that may not know, we had a house fire last January, losing everything (90% of our belongings, our entire house, our 2 vehicles, etc. etc.), but maybe that's a post for another day... I swear my life is better(?) than fiction.

I attributed most of my crummy feelings to stress. I put off going to the doctor for a while, until things settled a bit at home for my family. Once we were mostly done with rebuilding the house, I decided to finally see a doctor, just in case something else was going on. Two of the biggest concerning issues: I have lost some weight in the past year (about 30 lbs), and my "gut" was telling me something was "off" (yes, an actual GUT FEELING). I had a very similar feeling in my gut about a year prior to my first breast cancer diagnosis (an uneasy, uncomfortable, nauseous sort of feeling in the pit of my stomach that is almost constant) and at that time I spent a lot of time trying to figure out what was going on, and they could never narrow down the cause of my discomfort. It just so happened that not too long after I had pretty much given up hope on figuring out my gut issues, I was given the breast cancer diagnosis, and LIKE MAGIC the gut issues subsided. I know I sound bonkers when I say this, but that's truly how it went down. Perhaps my body has a way of signaling me that something is wrong. 

Gut: "Hey girl, something's up, maybe you should get it checked out?"

Me: "Awww, I'm fine, I'm sure it's nothing... I just have stomach issues, no biggie. I could stand to lose a few pounds anyways. Look how well these jeans are fitting!"

Gut: "MAYDAY!! MAYDAY!! GIRL, GET TO THE DOCTOR!"

Me: "Oh, It's fine, I'm sure it's just stress or some other explanation." 

Universe: (Dad gets diagnosed with metastatic cancer, Mother-in-law gets diagnosed with metastatic cancer...)

Gut: BITCH GET YOUR ASS TO THE DOCTOR PRONTO

Me: OK, OK...I'm going".

So, I had to find a new primary care doctor (and that's a process I kept putting off as well), and then I finally made an appointment. Shout out to the PA who actually listened to me, didn't think I was delusional and made a thorough plan to investigate multiple issues. I had labs drawn, Echo scheduled, wore a Holter monitor for a day, had an abdominal CT, chest CT... The chest CT found enlarged axillary lymph nodes (in a location very close to my original cancer, so obviously this was concerning). An ultrasound was scheduled, and the results were "suspicious" (no bueno). I was immediately scheduled for a biopsy of my lymph nodes. 

The results: metastatic mammary carcinoma. 

And here we are. I just had an appointment with my oncologist (yesterday) and so far, the plan involves getting further testing (a brain MRI, chest MRI, bone scan) to see if this is in fact a recurrence (same cancer as before that came back) or a new primary tumor. What I do know is that I will be having surgery (getting lymph nodes and surrounding tissue removed) and getting radiation. Not yet sure if chemo is happening again (have to wait on those test results <---).  

I'm not sure how often I'll be updating this blog, but I remember it being a good way to update folks (for those that are interested in what's going on with me), as a way to record what's going on for myself as well (I have gone back to re-read previous posts, because you forget things!) and it also can be therapeutic to write things down instead of keeping it all bottled up in my head. 

Thanks for being here. For those of you who are reading this...if you haven't been to the doctor in a while (YOU KNOW WHO YOU ARE), go make an appointment!

40 yr-old Mutant Ninja Woman

Well, the fat lady ain't singing yet folks!
As I turn the page on another chapter of this saga called life, I figured I should probably update anyone who might want to know those sorts of things. Since you are here right now reading this, I guess that means YOU do! Thanks for caring (or being nosey). ;)
I may have mentioned a while back that when I was first diagnosed, my oncologist had recommended that I have genetic counselling and testing to see if I carried a defective BRCA1 or BRCA2 gene. Because I was diagnosed at such a young age, they suspected that my cancer may have been "genetic" (or due to a faulty gene). I declined testing because I was not ready to deal with the ramifications of the test results at that time. At that time, I knew that I had multiple surgeries and chemo ahead of me, and I wanted all of those things behind me before I was going to tackle yet another "thing". I was given a huge packet of information to fill out and a number to call to set up an appointment with the genetics people (whenever I was ready).
So a couple of months ago, I decided to fill out the packet and give the genetics people a call. I sent the extensive packet in, and awaited them to call me back. A few phone calls later to try and piece together my warped family history, and then I had an appointment for genetic counselling.
At the appointment they ask more questions about my family history, and medical history. Then they go over this laminated book that tries to break down genetics/chromosomes, etc. for the lay person.
An actual picture from that appointment:



Now, don't get me wrong, I really did want to know the information, but I still didn't know if any of this information had anything to do with me. So, the science lesson was a bit lost on me at the moment. Plus, I think this kind of genetics "counselling" is meant for people who need help in deciding if genetics testing is something they want to do. I already knew I wanted the test, that's why I waited close to 3 years to get it. I did my homework (big shout out to Dr. Google) and was pretty well informed about my decision. Inside I was thinking "Ummm, so when do we do the blood test?...I sure hope my insurance covers this...how long is this going to take?...Let's get this show on the road folks!" After the science lesson from the counselor, a doctor (and medical student) came in to answer any questions I had, make sure I have thought about what the results might mean to me and my family.
Here's a pretty good article about the pros and cons of getting genetic testing for BRCA1 and BRCA2:

Why Would I Get Genetic Testing for Breast Cancer?

Weighing the Pros and Cons of Genetic Testing

By Betsy Lee-Frye

Although the process of genetic testing for cancer starts out with a simple blood draw, the topic of genetic testing is anything but simple.

The test comes with a whole minefield of possible emotional aftershocks, especially for those who receive a positive or ambiguous result. When considering genetic testing, it's important to weigh all the pros and cons with a trusted physician. Most doctors will also recommend that families visit a genetic counselor before seeking the actual testing.

Each year more than 178,000 American women are diagnosed with invasive breast cancer. But of those, only 1 in 10 cases is what physicians would call "hereditary breast cancer."
Hereditary breast cancer may be associated with a number of inherited conditions; however, mutations on two genes, called BRCA1 and BRCA2, have been the most studied by researchers in women with breast or ovarian cancer. In the typical situation, genetic testing for breast cancer evaluate mutations in these two genes.
Exactly how common mutations of these genes are in the general population is not known; however, in one study, researchers examined the genetic profile of 1,628 women with breast cancer and 678 women without breast cancer who were between the ages of 35 to 64. They found that 1.4% of African-American women, 2.9% of Caucasian women and 10.2% of Jewish women had a BRCA1 mutation. The same study also found that 1.1% of Jewish women, 2.1% of Caucasian women and 2.6% of African-American women had a BRCA2 gene mutation.
Experts recommend that women consider testing for BRCA1 and BRCA2 mutations if they have a "significant family history" of breast or ovarian cancer. According to the National Cancer Institute, a significant family history is defined either as having "two or more close family members who have had breast and/or ovarian cancer" or as having "breast cancer in . . . family members [that] has been found before the age of 50."valuate mutations in these two genes.
The National Cancer Institute defines "close" as a first-degree relative, such as a parent or sibling, or a second-degree relative, such as a grandparent or aunt. Also, genetic counseling is recommended for any women who is diagnosed with breast cancer before the age of 45.
Anyone considering the tests should talk to a physician or a genetic counselor about the pros and cons. For help in finding such a healthcare professional or for more information about genetic testing, call the National Cancer Institute's Cancer Information line at 1-800-4-CANCER. To learn more about personal breast cancer risk, you may find the National Cancer Institute's breast cancer risk assessment tool useful.

DNA (B Form) Robert Guy, National Cancer Institute

Considering the Cons of Genetic Testing
No medical risks are associated with genetic testing for breast and ovarian cancer, but test results can have a great affect on your life.

• Emotional health -- Both positive and negative test results can affect emotional health. Some studies indicate that people who receive a positive result are more likely to feel anxious about cancer. Although no studies have looked at how frequently this occurs, the National Cancer Institute reports that some individuals who have negative results experience survivor's guilt.
• Medical decisions -- A positive or negative test may affect what screenings or preventive steps a woman will choose to take throughout her lifetime. Those with a positive test result can choose from preventive actions that range from surgery to increased surveillance.
• Discrimination -- The Genetic Information Nondiscrimination Act of 2008 protects individuals from discrimination initiated by an employer or health insurance company. But the law does not include protection against discrimination when obtaining life insurance, short-term disability insurance or long-term care insurance. Those who test positive for a BRCA1 or BRCA2 gene mutation may struggle to acquire these types of insurance.
• It's also important for families who are deciding whether to test or not to know that the results do not indicate with any certainty whether an individual will or will not be diagnosed with breast or ovarian cancer. The average American woman has a 12% chance of developing breast cancer in her lifetime. A positive test result means a 14% to 87% risk of developing breast cancer.
• In about 10% of tests, the results are ambiguous. This typically means that the test wasn't able to identify one of the known BRCA1 or BRCA2 mutations that are linked to an increased risk of breast or ovarian cancer, but a genetic variant was discovered. People with an ambiguous test result are encouraged to talk to their physician about how to interpret these results.
  Considering the Pros of Testing: Emotional Health
  Although some studies link testing to an increase in anxiety, several others have found an association between declining to test and depression. One study found that among people with a significant family history of breast and ovarian cancers, those who declined testing had a significant increase in depressive symptoms 1 month after declining testing (from 26% at the time testing was offered to 47% at 1 month after declining the test). Reported symptoms of depression remained the same among those who opted for testing. According to the National Cancer Institute, it's not uncommon for individuals who choose testing to feel more "in control" of their health. Genetic testing allows individuals to take a proactive approach to their medical care.
  Considering the Pros of Testing: Physical Health
  Remember, a negative test does not mean that the individual will not be diagnosed with breast cancer, nor does a positive test guarantee an eventual breast cancer diagnosis. But genetic testing can provide individuals the information they need to make important decisions about medical care.
  Those with a positive test can opt for any of a variety of prevention options, including:
  
  • Increased surveillance -- The earlier cancer is caught, the more treatable it is. For most women, an annual mammogram starting at age 40 is recommended, as are annual gynecological visits beginning during the teenage years. For those with a BRCA1 or BRCA2 mutation, experts recommend beginning annual mammography at least 10 years prior to the earliest age of diagnosis within the family. Memorial Sloan-Kettering Cancer Center in New York recommends a clinical breast exam every 6 months. Women should consult their physicians about other methods of surveillance, such as MRIs.
  • Chemoprevention medications -- As the name suggests, chemoprevention drugs are medications that are designed to lower one's risk of developing cancer. Two of the commonly prescribed chemoprevention medications -- Nolvadex (tamoxifen) and Evista (raloxifene) -- are approved for use among women over 35. It is recommended that these drugs be used for no longer than 5 years. A National Cancer Institute study found that "Tamoxifen reduced the risk of invasive breast cancer by 49% in women at increased risk for developing the disease." But few studies have been conducted to determine how these medications impact those with specific BRCA1 and BRCA2 mutations. Be sure to talk to a physician about possible side effects associated with medications such as tamoxifen and raloxifene. Tamoxifen has been linked to a host of side effects, including nausea, hot flashes and in rare cases, an increased risk of endometrial cancer.
  • Prophylactic surgery -- This step involves the removal of tissue that is at risk for cancer before the cancer develops. Those with a BRCA1 or BRCA2 mutation can choose preventive mastectomy, hysterectomy, removal of ovaries and fallopian tubes, or any combination of these procedures. Prophylactic surgery has been shown to reduce the risk of breast and ovarian cancers by 90%.

^So...consider yourself better informed. :) Annnnnnnnd, back to ME. I had the test immediately after my "counselling" appointment (which consists of going down to the lab and them taking a couple of vials of blood - no biggie.) I had to wait a couple of weeks for my results. And the results came in a couple of days ago.
The results were........................BRCA2 positive. Which means I have a mutation of the BRCA2 gene (exon 10 to be exact!). Look at me beating the odds once again! (I need to start playing the lottery)... Those with a BRCA2 mutation are more likely to develop breast cancer (shocking!!), ovarian cancer, pancreatic cancer, melanoma, and leukemia (prostate cancer as well, but I don't have to worry about that one - phew). I was at work when I found out, and I cried on and off throughout the day. I will be scheduling surgery for a bilateral Salpingo and Oophorectomy - BSO (getting my ovaries and fallopian tubes out) or total hysterectomy (depending on what the doc recommends) ASAP. I am not too worried about the surgery (I have heard it's much easier than the other surgeries I've gone through). Although, I am not happy at having to take more time off of work (they have been so wonderful and accommodating, but after a while I am sure they think "enough already!", 'Cause I'M thinking "ENOUGH ALREADY".
I cried for the unknown future of my two little girls. (There I go crying again...dammit, EVERY. TIME.) Their risk of having this gene is 50%. My worst nightmare is that either one of my kids have to go through any of this crap, especially having seen me go through it. I am not saying anything to them about it at this point in time. There is no sense in them worrying right now, as there is nothing they would be able to do about it anyways. I asked the counselor when they could get tested, and she said not legally until they are 18 years old, but she recommends waiting until at least 22 years old (as the results would most-likely be too difficult/heavy for an 18 year old to have to make those kinds of decisions, maturity-wise). I did tell my older daughter that I was going to have to have another surgery, but just that the "kind of cancer that I had made me more likely to get a different kind of cancer in my ovaries, so I am going to get them out just for protection".
So, next for me is another appointment with the genetics counselor and genetics doctor to talk about what should happen next, then an appointment with the oncology gynecologist to talk about my surgery options, then surgery.
I've got to admit, I'm kind of over it. ALL of it. I am not surprised at the test results, and it makes me feel a little bit better to know a little bit of WHY this happened to me. It was in my genes, I was predisposed to it. I also feel good that I can proactively do something that could possibly prevent (at least) ovarian cancer. But, I kind of feel like this:

I'd like to get back to normal life now. The normal, mundane and boring crap that I probably complained about before all of this - I long for that shit.

But for now, this "40 year-old mutant ninja woman" apparently has some more work to do...



SCAN-XIETY

I have mentioned previously about the pains that I have been having (in my knees and hips mostly). Well, of course I mentioned it to my oncologist a few months ago. He wanted me to stop taking my Tamoxifen (the drug that is supposed to help prevent the cancer from coming back, as it blocks estrogen in my body, and my particular tumor loves estrogen). So, I was a bit apprehensive in stopping the drug that is supposed to help keep the cancer away (I envision Tamoxifen like a figurative shield. Picture me laying down the shield at my feet in front of a giant fire-breathing dragon (cancer). Soooo, apprehensive may be a bit of an understatement.
Regardless, I did as instructed. I stopped the Tamoxifen (for a few months) to see if the pains went away. No difference. So, I was sent for some blood testing to see if there was anything out of whack there. I was also tested to see if I was in menopause (the chemo often throws you into a temporary premature menopause, and it can be permanent). The doc was checking for menopause, because he thought that perhaps I had menopause-related arthritis. (SERIOUSLY...menopause AND arthritis), among other things. Fuck you very much cancer.
Turns out I am clearly pre-menopausal (take THAT cancer). But, that didn't explain the pain. So, more tests! I was sent for x-rays of my knees and hips, just to see if there was anything that they could see that might account for the pains. They saw something in my right sacro-iliac region (kind of where your lower back meets your hip). The radiologist that read my x-ray suggested that I get an MRI or a bone scan to check for metastasis.
M E T A S T A S I S. Let's just let that sit there for a minute...

Deep breaths... When I read the x-ray report I was terrified, but numb at the same time. I thought...how in the hell am I going to tell my friends and family that they are checking my bones to see if the cancer has spread. So, I didn't tell them. Not right away. My husband has been stressed lately (work stress that I won't go into here, on top of other family "stuff" - CAUSE THE WORLD DOESNT STOP SPINNING JUST BECAUSE I HAD CANCER. Boy, would I like it to slow down a bit sometimes though. I didn't want to cause him, or my Dad or my friends any more stress right now. I felt like, I could handle this. "I'VE GOT THIS". But, then after a few days I felt like I was doing myself a disservice not allowing them to be a support for me too! I told my Dad and hubby (but tried to glaze over it, like it was nothing). "It is probably just some old injury that I have had my whole life, or arthritis, or, or..." I'm not sure if they bought that or not.
Well, I had my bone scan while I was at work the other day. It's a 2 part test, where they inject you with radioactive stuff earlier in the day, and then you come back a few hours later and lie on a table perfectly still for an hour and get scanned. Pretty painless (unless you have issues with needles or tight spaces). I had not told my best friends about the scan, as I didn't want to worry them. One of my friends (that works at the hospital with me) saw me as I was coming back from the injection portion of the scan (and I had a bandage on my arm), she saw the bandage and asked me about it. BUSTED. I tried to blow it off, and said that I had a test...and she kept probing. So, I spilled the beans. Then I showed her the report from my x-ray. And...she Googled. I warned her not to Google, but she didn't listen. Then, she came back to my office in tears. Damn it, this is exactly why I didn't want to tell anyone! I hate to see the people that I care about affected by all of this shit! It's bad enough that I have to deal with all of this, it's just not fair that those that I love are hurting by this whole thing. To top it off, it was my friends birthday the next day (and I certainly didn't want to spoil it with my crap). Well, the cat was out of the bag now so, as she said... "it was either going to be a good birthday (and another reason to celebrate) or the news was going to be the worst birthday present ever" (we had a good laugh over that for a few minutes...shows you how warped our sense of humor is).
The next day I arrived early to work so that I could get my results. "no evidence of metastatic disease" is what the report said (that, and I have some degenerative stuff happening in other joints in my body, arthritis really), but IT WAS NOT METASTISIS.
I called my hubby, my Dad and let them know (you know, after I had a good cry at my desk). I sent my friend a message that said "HAPPY BIRTHDAY!" (and included a copy of my bone scan report). She replied "BEST PRESENT EVER".

PINKtober!

Today is October 1st. The beginning of PINKtober, or breast cancer awareness month. I thought this was as good a time as any to make a new blog post.
Hi there, it's been a while! Miss me?
Let me start by telling you my feelings about PINKtober (or the marketing of "breast cancer awareness month", and thus the PINK-ing of just about EVERYTHING).
First of all, I feel as though most people have their hearts in the right place. Some people are genuinely interested in promoting breast cancer awareness, or are donating a good portion of the proceeds from their pink-colored product to help the cause in some way. People buy these products to help the cause as well, or because they support someone who is (or was) fighting the disease. I have to admit, I purchased my share of pink ribbon items too! When I think about why I bought those items, I can think of a few reasons. For one, it is a way that I identify myself now. The same way that someone would buy a college sweatshirt, and wear it with pride. Part of me thinks, "breast cancer...been there, done that, got the t-shirt too!" (Hey - I should totally market that!!)
Wearing pink ribbon items (especially when I was bald) was a way to field the question that many people were thinking when they looked at me ("Hey, she looks like she has cancer...I wonder what kind...Oh, look a pink ribbon! That answers that!").
I also wear the pink ribbon as a way to show other survivors/fighters that "I did it, and so can you!" There is a strange sisterhood that you join (like a really warped sorority), when you are diagnosed with breast cancer (not to forget the men that have been diagnosed with breast cancer too...a shout out to my breast cancer fellas!) I can't tell you how many survivors have said something to the likes of "Hey, welcome to the club we never wanted to join!" after hearing about my diagnosis. Wearing that pink ribbon stuff lets others know "Hey, I'm in the club too!"... It's even better than a secret handshake. After I was done with my Herceptin infusions, I put a pink ribbon "Survivor" sticker on my car. I wouldn't call myself a survivor until I was done, and not until after my port was removed. Not until then, did I think it was real...that I HAD really made it, and maybe I was going to be OK after all.
The part about PINKtober that I take issue with, is when companies market products (especially products that are known to contribute to/cause cancer!), making them pink just to make a buck. Or they say they are donating "a portion of the proceeds" to the cause, when in fact it is less than 1% or something like that. It kind of irks me that we are still calling this breast cancer "awareness" month - I mean, I think we are all AWARE of breast cancer at this point, aren't we?!?. You'd have to live under a rock not to see all of the pink everywhere. You have to admit, breast cancer is probably the most "advertised" cancer of them all, it's sexy even! Hell, it's PINK. Part of me feels kind of special for all of the attention to "my" disease. Part of me also feels terrible that other cancers don't get near the attention that breast cancer does (shout out to all of my other cancer fighters out there! I haven't forgotten about you!).



So...me? A lot has changed since I wrote my last blog entry. For one, I have hair now! I have even gotten (grammar?) a couple of hair CUTS. As I mentioned, I had my last infusion of Herceptin, and had my port removed (whoop whoop!). It seems weird to be done with all of that. I don't feel like I can relax though, and I hope that feeling subsides. I keep waiting for the other shoe to drop. I am still dealing with some lasting effects from my treatment. My neuropathy is worse, but I am still able to function. I have come to terms with the fact that it is probably permanent at this point. I am still dealing with some heart issues (I see my cardiologist tomorrow actually), and I get echocardiograms every few months to keep monitoring things, and I am still taking heart medication. I still take Tamoxifen, and will probably for the next few years or so. I still get tired easily, and don't have the endurance that I used to have. I have pains in my joints, etc. that make me walk like a senior citizen sometimes. Blah blah blah...I am done complaining. I do want you to know what my experience is like, but I don't want to whine all "woe is me" either. Because, my life is good - and I really am grateful to be able to sit here and bitch to you all.  (I bet you are too) :)
I have since had a couple more friends go through cancer treatment as well. I am so happy that I was able to be a sounding board for them, being someone that had been there (at least in some way), and could relate in a way that not many others could. It almost makes all that I went through worth it - almost. ;)
I have thought more recently about going to a support group. I am still undecided. I know that there are some real emotional issues that come along with being a "survivor", and it would probably be best to work through some things. Most days, I want to just carry on and try and pretend it didn't even happen. Yeah...that's totally healthy, right? No unresolved issues there!

Survivors guilt

Since I last posted, a few things have happened (well, many more than that actually, but - who's counting?)  I had surgery (more reconstruction stuff), creating the resemblance of nipples, and fat grafting to fill in some areas to make them look more realistic. I am pretty much back to normal/recovered, and I returned to work last week as well. (I am still a bit sore, but I don't have any limitations except not to be involved with activities that might excessively rub the new "headlights" - I will leave the details up to your imagination. :)
On a more surreal note...I have lost a few folks to cancer within the past few months as well. (Some only acquaintances from facebook, a couple facebook friends I knew in real life, more recently a family member). I also have a couple of friends who have been recently diagnosed with cancer. I don't want to make this about me, really I don't. But - if I am going to give you a REAL glimpse into what my personal experience is, I can't leave this part out. I am talking about survivors guilt. When you have been diagnosed with cancer yourself and then hear of some you know that has died as a result of their cancer - it can hit pretty close to home. As someone who had/has(?) cancer (I don't know how the hell to qualify myself these days - which is weird), it makes you feel guilty to be alive. It makes you feel extra sad for the family of those that have recently lost loved ones, knowing that THEIR outcome, could very well have been YOUR outcome. Hell, it still could be. (Those are the feelings that I live with on a daily basis). For every pain, I wonder if it is a reoccurrence. When I feel forgetful or feel "cloudy thinking", I wonder if the cancer has spread to my brain. All. the. time. I try to push those fears away, because I cannot live like that every day. I try to keep busy with life, so that my mind doesn't go THERE. But, then when I hear of someone who has succumbed to the disease, it makes it more real - and I can't pretend that I am not afraid. Then, I feel really selfish that I have somehow made their passing, into something about ME. Geesh. Cancer sucks. But it also reminds me that life is so fragile. Fragile and beautiful, and messy and scary.
I found a couple of great articles about survivors guilt. I will include them here, in case someone else might find it enlightening/helpful.
 http://www.mayoclinic.org/diseases-conditions/cancer/expert-blog/cancer-survivor/BGP-20056372
https://www.whatnext.com/blog/posts/feelings-of-survivor-s-guilt-and-15-ways-to-cope


I recently came across a post in an online breast cancer support group. I posted it on my wall on facebook, but I want to post it here as well, because I know there are some folks that might benefit, and they are not on facebook. Here is what I posted:

I'm posting this, because it is so SPOT ON - and it might be helpful for anyone who has had a cancer diagnosis, or loves someone who has. Warning, this is super long, but worth it. (Not sure who to credit, but the word on the street is that this was written by an oncologist, and given to his/her patients after their diagnosis):

"Your relationships are about to change.

All of them. Some will get ...stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won't help your recovery. Fighting for anyone to stick with you won't cure you. Those who can, will.

You will be determined to have more energy than you do.

You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won't lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.

You are going to feel fear.

Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You'll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it "chemo brain" for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.

The people that love you will be just as scared as you are.

Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don't understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You'll cry together too. Then you'll get to a place where you will just live in the world again together and that is when you know that you have beaten this.

The sooner you recognize that you are mortal, the sooner you can create the mentality for survival.

There is a chance you might not make it. Just like there is a chance that you will. Don't look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won't have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won't die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.

Your doctors and nurses will become your source of comfort.

You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.

You will need to find balance after treatment.

Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever.

You will inspire others. It will feel weird.

People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to re examine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.

When you get to the other side you won't believe it.

They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You'll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You're going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You'll be more productive. You'll understand who truly loves you because they will still be there. You'll want to meet new people that connect to the newly evolved version of your old self. You'll want to let go of those that don't "get" who you are now. You'll feel a little guilty doing it. Then, you'll move on. You don't have time to waste. The greatest gift you've been given is that you now understand that and you're going to make the most of every second. You're going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again."

 

I strive to be fearless again, and find that greater purpose. It's gonna happen.

Thankful.

Today is exactly one year from when I had that gynecologist appointment (finally!), to check out a lump in my breast that I had been delaying getting checked out for quite some time. Denial sucks people!! - if you have a feeling something is wrong with you, if you have a lump, a sore that won't heal, a mole that has changed, or other symptoms that something isn't right with your body - TRUST YOUR GUT and don't wait to get it checked out!! *Steps slowly down from her soapbox  :)

It seems fitting that today is also Thanksgiving. This year has been full of ups and downs (OK, mostly downs - but who's counting!?!). Although I am not done with "treatment", as I still go for infusions until May of next year...it's not all in my past yet. I can reflect on this past year as probably the worst time of my life actually - but you know what, I'm not going to do that. I am going to take this time to be thankful. Because, I am.
First off, I am thankful to have yet another day in which I woke up on this side of the grass.
I AM ALIVE. This one's a biggie. As I started this journey a year ago, I wasn't sure if I'd be here right now (some of you probably wondered as well - it's OK to admit it). Well, crap. Now I am crying... It's OK though, because I am HERE, feeling those feelings. I am not sure if I am comfortable with the label "survivor" just yet.
I am thankful for my family, who has had to see me going through all of this awfulness this past year. They have been there to help me physically and emotionally in more specific ways than I can even mention. This is not a journey that any of us asked for, but they have stepped up to be pretty damned stellar. Adam, when you eventually read this, know that I appreciate all that you have done to pick up the slack when I was feeling at my worst. To know that I always have you in my corner, and that I can depend on you to help with the girls (even when I was trying to be "Super Cancer Mom") has made this past year easier on me. We make a pretty awesome team.
I am thankful to have some of the best friends out there. You have truly made all of this much more tolerable. From staying over night with me after surgery, emptying drains, setting up the care page, bringing meals, having a benefit!, offering to take the girls, offering support to me and my family - I can't thank you enough. To my "breast friends" too! (those gals that have been there, done that - and offered advice, lent an ear (or Facebook message ;), you gals have helped me more than you know. To my Facebook friends & family, I mention you specifically because you have been a huge support to me over the past year, posting things on my page, sending private messages. Facebook can get a bad wrap sometimes, but it also does so much good for folks as well. You have all been like a giant support group for me, and I thank you.
For the random people that I have encountered this past year when I was going through the worst of the chemo. Those people who offered me a smile when I needed one, who stopped me to tell me of their own or a loved one's survival story, who told me I was beautiful (liars all of you! LOL),  strangers who offered me encouragement or asked me how I was feeling, and those who have taken time out of their day to think of me, pray for me and my family - I thank you.
For those of you reading this blog right now, whether I know you or not - you have been a part of this journey too, and I thank you, because you care enough to want to know what's going on with me, regardless of the reason. For those that have shared my blog with others, thanks for that. Knowing that my blog might help someone else in this journey makes my heart smile.

For my birthday, I'm getting a brand-spanking new pair of...

BOOBS.
Yes, yes I am. I have my "exchange" surgery scheduled for this Monday (Sept. 16th). My birthday is actually Sept 17th  - so, I guess we are celebrating a day early ;).
Since I haven't updated you all in a while, and I don't expect all of you to remember what "step" in the process I am at right now, I will refresh your memory... I currently have what are called "expanders" in my chest, that only slightly resemble breasts.  The expanders had been originally placed when I had my double mastectomy (back in January - can you believe it was THAT long ago already?!?), and were placed under the muscle in my chest (and filled with about 100 CC's of saline at the time, so I didn't wake up completely flat). I had to wait to heal from the mastectomy and then had been undergoing the "filling" process every week to 2 weeks, where I would go into the plastic surgery office and they would inject between 50 to 100 CC's more saline into my expanders every visit (depending on my tolerance). I did this for a few months, filling the "expanders" until I got to the size I wanted (or until my skin yelled "no more!!"). Once the expanders got to the desired size (or until I cried Uncle from the pain), I stopped with the "fills" (which was back in June). I had to wait a few months (for the expanders to "settle"?), and then had my "exchange" surgery scheduled. The exchange surgery is where they... well, EXCHANGE my expanders for the "permanent" implants. I put "permanent" in quotes, as they estimate the implants last around 10 years or so, so I would be trading these babies in for a new pair in approx. 10 years(ish). That, pretty much brings you up to speed with the surgery that is scheduled for this Monday.
The next step would be waiting another few months for me to heal and then doing another part of the reconstruction process, where they do a fat transfer (take some fat from somewhere else in my body), and inject it into the chest area to fill out the areas that would have normally had fat to make them more realistic looking. Plus, they do the nipple reconstruction at that time. I would have to then heal from that surgery and, if I want, get a tattoo in order to make the nipple have color.
So...what else can I tell you...
I have been done with the nasty chemo for a couple of months now. I have been corrected by my cardiologist when I said that I was DONE with chemo. She says that the infusions of Herceptin (that I continue to get every 3 weeks until May of next year) are still considered chemo. Phooey, I say! I was so proud to be able to say that I was done with chemo. Whatever, I am still saying that I am done with chemo. It's all semantics anyways. Technically, Herceptin is a Bio-therapy (but still is made up of chemicals, per se), so I say...WE'RE BOTH RIGHT! :)
Speaking of chemo...I had a minor hiccup with my heart that was picked up with a routine echocardiogram (echo). It looks like there is a slight issue with one of my valves, that could be related to a "bundle branch block", and they had noticed some fluid around my heart as well. After a few tests, and monitoring, it looks like my heart is functioning well though (well enough so that they don't have to stop my Herceptin infusions). They are not positive that the issues with my heart were caused by (or exacerbated by) the chemo, but it is possible. My last check up with the cardiologist came back A-OK, so that is good news (although they will continue to monitor stuff). My blood pressure is normally a bit low, so they recommended me getting more salt in my diet and drinking more fluids (wine totally counts right?!?) ;)
My hair is starting to come in quite a bit now (at least that is what people keep telling me!) I still look like a bald chick, mind you - but it's coming along. My friend Suzy said, "you were at that fuzzy chick stage, and pretty soon you're going to get your big girl feathers!" She also was the one to say that I am starting to look less like a cancer patient and now, and we are starting to look more like a lesbian couple. Awesome. Honestly, I'll be happy when I get to the point where people are giving me looks, questioning my sexuality and not giving me looks of terror or pity because I look sick. Bring it.

I had a photo shoot with a local photographer a couple of weeks ago - Karen Luce. She published a book called "Pink Portraits". A book that tells the story of some local breast cancer survivors. Here is how Karen (the photographer) describes the book: "13 amazing breast cancer warriors and survivors - share their stories of laughter, tears and courage. A portion of the proceeds go to breast cancer supportive care and research. Available at http://www.KarenLuceCreative.com/ "
Here is a link to the Pink Portraits Facebook page as well: https://www.facebook.com/PinkPortraits
Karen had asked for nominations (of breast cancer survivors) for her next possible project, and I had been nominated by my friends Joanie and Becky. I won, and got a photography session with Karen! Here is one of the pics from that photo shoot:


Another pic that she posted, included my girls and I:


Karen and I met for dinner about a month(ish) ago, so that she could get a little of my story as well. I directed her to this blog too (So, if you're reading Karen - HI!!) :)
When I met with Karen, she asked me if I had any requests for the kind of photos that I wanted. I told her that I had a couple of ideas. (I have an interest in photography myself, and I can invision a few pics that I think would be cool, had I not been the subject of the photos, and maybe I was taking the pic myself). It's on my bucket list to get to know my camera better, and get more into photography. I just love the way a photograph can be powerful, emotional, beautiful - sometimes all at the same time.
I told Karen that I really wanted to have a pic with my girls and I. They are getting older every day, I am starting to look less and less like a cancer patient. I wanted to capture this moment in time. Not that I plan on framing and putting the pic on the wall (although I think the 2 pics she posted are magnificent - I can't wait to see the rest!), I don't know if having the pic as a constant reminder in my home is something I want. Who knows, maybe because it's all still so raw for me...I could totally change my tune a few months from now.
After the photo session was done, I hung around the park area with my girls, and we took a few more pics with my phone. Here is one I had my daughter take:


Another that I took of my girls:


I love how hazy and dream-like these 2 photos turned out. (If you look really close, you can see bandaids on both of my daughters knees too... I love the dichotomy (paired with how lady-like she does her curtsy) and it makes me love this pic even more.