One Year

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One year ago today, my life changed forever.

One year ago today, I got the news no one ever wants to get: “You have cancer.”

My first “cancerversary,” as it’s called by so many who’ve dealt with this nasty disease, felt almost like groundhog day. Last year, when I got the news, I was en route to Chicago for a business trip. The thing is, it’s a trip I make every year at the same time. So, once again, I’m in Chicago. And I feel almost like I’ve been reliving the events of last year.

Just like last year, I spent my layover in the Atlanta airport. And I spent today walking the furniture market in Chicago. I’m staying in the same hotel. Even the weather is eerily the same–hot and stormy.

Looking around this hotel room that looks exactly like the one I retreated to last year, those feelings of terror and despair feel closer to me than they have in a while. And yet, in this same space, I remember good things, too.

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The Chicago sky, last year

In that first awful night after getting the news, I holed up in my room to wallow. I cried–my body heaving with sobs that left me practically breathless. And then, I began to pray.

I’m not a particularly religious person. I don’t go to church. I don’t read the Bible regularly. But, I’m definitely a spiritual person. I pray a lot. I talk to God. And I have a pretty strong relationship with him.

That night, I begged. I bargained. I reasoned. “Please don’t take me now. My son still needs me. Please let me see him grow up.”

And in the midst of my agony, I suddenly felt calm. A strange feeling of peace washed over me, and somehow, I knew everything would be OK.

While some will say it was merely my mind playing tricks on me or whatever, I truly felt it was God letting me know things would be alright.

I’ve carried that moment with me throughout this past year. When things got really hard, and I feared the absolute worst, I returned to that night in this hotel. That moment of peace has sustained me through this ordeal. And though I’m still fearful, I keep that peace with me to calm the worry and anxiety that simmers deep within.

I’ve lost a lot this past year: My breasts, my hair, my ovaries, my peace of mind. I lost my innocence in the sense that I no longer trust my own body. It has betrayed me, and I’ll never be able to feel an ache or pain without that voice in my head wondering if it’s a sign of something much worse.

But I’m still here. And while I’ve lost so much, I’ve gained so many things, too. Perspective. A new sense of gratitude. A renewed appreciation for the gift of life. The knowledge that I am stronger than I ever thought.

Today has certainly been bittersweet, but mostly, it’s been a good day. I’m thankful to be here. To be well. To be alive. And for today, that’s enough.

 

Moving On

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The year that launched a thousand memes, 2016, was pretty shitty for a lot of people. And thankfully, that sumbitch is over.

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This year was a time of sorrow and loss for so many people. All the celebrity deaths aside (and holy hell, were there a LOT of them!), I know so many people who lost loved ones this year. My husband’s uncle passed in February, I have two friends who lost parents, another who lost her sister, some who lost unborn children to miscarriage, one who lost her cousin/best friend (who also happened to be my high school classmate)…the list goes on and on. And those aren’t the only losses–I have friends who lost jobs, promotions, etc.

On top of all that, there’s been plenty of chaos and strife, from terror attacks, to the instability of Brexit, to the Syrian crisis, to the utter shit show that was the 2016 U.S. election.

Obviously, this was a tough year for me personally, as well. Being diagnosed with cancer, learning I have a genetic mutation that makes me predisposed to cancer, going through chemotherapy and then a bilateral mastectomy was one of the hardest things I’ve dealt with in my life. I have never felt such physical and emotional pain. I have faced the terror and sadness of my own mortality.

My family has suffered, too. My poor husband has stood by me through this whole ordeal, a steadfast rock who held my hand as I cried during my first doctor’s appointment, shaved my head when clumps of hair fell out during chemo and changed my disgusting drains after surgery. And he has done all of this without complaint. I know it’s been hard on him, and I am thankful every single day that I married such an incredible person.

And with him, I’m thankful I married into such an incredible family. His family has been there for us in so many ways, from taking care of my son when I was recovering from chemo or surgery to filling my mailbox/inbox with cards and messages of love and encouragement to just being there to provide a hug or smile when I needed it.

My own family has been amazing, too. My sisters have been a constant source of support, and my dad has been so sweet and concerned–seeing his child face this has been hard for him. And my vast extended family has wrapped me in love and support, too.

My amazing family hasn’t been the only group cheering me on through this crapfest of a year. My friends–best friends I’ve known since childhood, newer friends who’ve become an important part of my life, a group of fellow moms who’ve become a huge part of my support system, former coworkers and even folks I haven’t seen or talked to in years–have shown me so much concern and love.

And my current coworkers–two of whom were literally by my side the day I got the bad news about my diagnosis–have been so wonderful. My absences due to chemo and surgery have been hard on them, but they’ve handled it like champs and never made me feel like I was letting them down. And the company I work for has blown me away over and over again with their capacity for kindness and generosity. I thank my lucky stars every day to be part of such a fantastic organization.

This year has been SO incredibly hard. It has tested and challenged me in ways I’ve never experienced. It has broken my heart on so many occasions. But it also has taught me how much love, kindness and good there is in the world. I am so grateful for every single gesture I’ve received this year, from loved ones and strangers alike. They have made this journey a little more tolerable and they have taught me that even when things are dark, there is still light in the world.

It’s that spirit that I’m taking with me into 2017. I still have some challenges ahead of me and a couple surgeries yet to complete, but I know that this year is going to be better. I can just feel it. I’ve always seen the new year as a chance to refresh and start over, but never before has that feeling been as strong as it is this year. I am ready for 2017, and I’m going to do my best to make it a great year.

I wish you all joy and good health in 2017. It won’t be a perfect year, but I am hopeful it will be much better than what we’ve just finished.

 

 

 

 

What Not to Say to a Cancer Patient

I’ve had a lot of time to sit around and think since my surgery. And one of the things that I ponder is all the stupid things I used to say and think about cancer.

Like most people lucky enough not to have personally dealt with the disease, I didn’t really understand how it worked. I’m still no expert, but I know a great deal more now than I once did. That knowledge makes me cringe at some of the things I used to think and say.

Outside my own transgressions, I’ve had a lot of well-meaning people say some pretty ridiculous things to me. I know it comes from a good place, and I also know that most people struggle with finding the right thing to say to someone with cancer. They want to help. But some of the things they say are pretty unhelpful. And some are downright rude and/or hurtful.

Here are some of the worst/most common things people have said to me that I would advise people to avoid when interacting with people battling cancer:

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“You know eating/drinking meat/sugar/alcohol/etc., causes cancer.”
During my first appointment following my diagnosis, I met with a nutritionist who gave me a list of food-related cancer myths. What she told me was this: Yes, eating a plant-based diet with lean protein is best for cancer patients. But, it’s best for everyone, and it has nothing to do with cancer. There is just not enough research definitively linking any food/drink to cancer. Yes, there have been studies that have mentioned certain foods could cause an increased risk, but these findings are not widespread enough to officially draw a direct causal link to cancer.

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“You know your deodorant/lotion/makeup/soap causes cancer.”
No. Just no. This is even worse than the food one. There is no solid medical evidence linking any personal grooming products such as deodorant to cancer. Most of the time, you’ll hear these claims made by people/companies peddling “natural” body products, which, to me, is disgusting. To use the fear of cancer as a marketing ploy is really beyond the pale. My deodorant did not cause my cancer. My genetics did.

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“There’s a cure for cancer, but the government/pharmaceutical companies won’t ever allow it to be discovered/used because they would lose too much money.”
I must admit, I’m guilty of saying this one in the past. And of all the wrong things people say, this one sticks in my craw the most now. The truth is, there is no one cure for cancer. There aren’t five cures for cancer. Because cancer is an incredibly complex disease. Even within one type–breast cancer, for instance–there are so many different variations that change the way it’s treated, the way it grows and whether or not the patient survives. For example, breast cancer patients can have one of two different types of gene mutation that can cause their disease (BRCA1 and BRCA2), or they might not have the mutation at all. Their cancer could be estrogen receptive, progesterone receptive or HER2 positive. Or it could be a triple negative or any combination of the three. There are so many variables that finding a “cure” that address all of them all is damn-near impossible.
On top of all that, this kind of statement spits in the face of all the intelligent, dedicated people out there in the medical industry fighting cancer every day. People like my wonderful oncologist, who not only has a professional stake in this battle with his years of medical training and experience, but also a personal stake since his own wife is a breast cancer survivor. If there was a cure, he would be the first one doling it out.

There are so many things you can say to a cancer patient. “I’m here for you.” “I hope you’re feeling good.” “I love you.” If you want to be helpful, offer to make food or do chores. But unless your friend or loved one asks, don’t offer your medical advice. Because trust me, they probably don’t want to hear it.

And if you’d like to learn more about the disease from a factual, research-based source, I highly recommend visiting the American Cancer Society website.

Mastectomy, Simple, Complete

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Yesterday I met with my surgeon to discuss my upcoming bilateral mastectomy and lymph node removal/biopsy. I now have a surgery date, and it’s very soon.

When I got home last night, a notice from my insurance company awaited me, informing me my surgery had been approved. In the section with the coding for the procedures, it said: “Mastectomy, simple, complete.”

While it will be complete, nothing about this is simple.

When I received my diagnosis back in July, I immediately feared I’d need a mastectomy. I’d run through all the scenarios in my mind by the time my doctors told me a much less invasive lumpectomy would be just as effective. Cue the relief.

Of course, that was before I found out my BRCA2-positive status. That changed everything.

Now I’m facing a bilateral (double) mastectomy, along with the removal of some of the lymph nodes in my left armpit (the side where my cancer occurred). Those nodes will be checked for cancer cells.

I’ve opted for a nipple-sparing procedure with reconstruction. This basically means that all the tissue inside (which reaches up nearly to my collar bone and around the sides of my chest) will be removed. Then, the plastic surgeon will insert expanders, which are essentially deflated implants that will be injected with fluid over a period of weeks to allow my skin to heal and prepare for the insertion of the permanent implants.

My surgeon said the recovery process will last 3-4 weeks. And several of those weeks I’ll have drains on either side of my chest to remove fluid that builds up in the space between my healing skin and the expanders. I’ll have to empty these daily. Blech.

Obviously, my mobility will be seriously affected during recovery, and I won’t be able to drive for at least two weeks after. I guess I’ll finally have a chance to catch up on all those Netflix shows I’ve been meaning to watch.

The pain, lack of mobility and even the disgusting drains (have I mentioned how gross they are to me?) aren’t what I’m most worried about, though. Per usual, my son is my biggest concern.

I won’t be able to lift much of anything during recovery, which means picking him up is a no-no. This is problematic because my son is very attached to me. I pick him up multiple times a day. And on top of that, he’s constantly in my lap, falls asleep on my chest and ends up in bed with me most nights. All of that will have to change. Like the end of breastfeeding, I know this is going to be a fairly difficult adjustment for him. He won’t understand. He will cry. And I probably will, too.

So, yes, this mastectomy will be complete. But it is far from simple.

The Sick Blanket

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This blanket has seen better days.

When I was a kid, we had a special blanket in our house that we referred to as the “sick blanket.” Well-worn to a buttery softness, its faded 1960s floral pattern seemed to instantly soothe any invalid wrapped within its calming embrace.

Since I was diagnosed, several people have given me blankets. And while these new blankets are cozy and lovely, when I feel really cruddy I find myself reaching for my own “sick blanket.” A gift from my mother when I went away to college, the faded blue afghan is frayed and a bit ratty, but it’s also incredibly comforting.

I’ve spent a lot of time with the “sick blanket” the past two weeks. I started Taxol on Sept. 28, and two days later I started feeling bad. I was running a fever, which made me feel totally run-down. I took some Tylenol and a nap and waited for it to pass.

Fast-forward two weeks. I’ve been fighting a fever this whole time, which came with a headache, chills and other fun symptoms. I went to the doctor several times and got poked and prodded more than once to do all sorts of tests to determine the source of the fever. After multiple rounds of clean lab work, my doctors were perplexed. They gave me an antibiotic to try, but weren’t sure it would actually do anything since they couldn’t find any sign of infection.

On Monday of this week, I called to let them know it was still going on, and my oncologist decided I should have a brain MRI. Cue the stomach drop. This is not a test you want to have ordered. I immediately lost it, my mind going to all kinds of dark places and scenarios.

Yesterday, I went in for my weekly consult and to get chemo. My lab results showed my white blood cell count was too low, so they wouldn’t give me chemo. And the PA whom I usually see told me that my oncologist now wants to do a PET scan if the MRI results come back clean. Cue more freak-out.

I straight-up asked her if they think I have more cancer, and she said my oncologist has concerns, but this doesn’t necessarily mean there’s anything going on. I also asked her if this could possibly be a result of the Taxol. She said that was a possibility and that my oncologist’s partner had a patient who basically had a fever the entire time she was on Taxol. But, she said they wanted that to be the last box they check off, after they rule out everything else.

Rationally, I know it’s good to do these tests to be sure there’s not something else happening. If there is, we need to know so we can know exactly how to proceed. But I am scared. SO scared. The thought of more cancer showing up on one of these tests sends me into a tailspin. It makes me nauseous to think about it. I hope and pray this is just my body’s reaction to the Taxol, because that’s something I can handle. More cancer is not.

I’m feeling much better today (and have been progressively for the past few days). My fever and headache are mostly gone, and while I’m still wiped out from all of this, I am actually at work today and feeling halfway normal. I’m hoping this is all a good sign.

In the meantime, I wait. I’ll probably spend more time with the “sick blanket” this weekend, too. I’m not feeling as sick, but I still need the comfort.

The Last of the Worst

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There’s a light down there, and I’m just a little closer to it.

Today is a big day. I just received the last of the first (and most intense) round of chemo. My oncologist told me today that life will get much better after this. He’s a pretty solid guy, so I’m inclined to believe him.

The first round of my treatment involved two drugs, Adriamycin (doxorubicin) and Cytoxan (cyclophosphamide). If you check out those links, you’ll get a better idea of how I’ve been feeling the past month-and-a-half. Fun stuff. Here’s another fun fact: When my nurse gives me the Adriamycin injection, she has to suit up in what amounts to hazmat gear because it’s dangerous if the drug gets on her clothes or skin. And that’s being injected directly into my jugular via my chemo port. Scary shit, right?

But that’s not the only reason today kind of rocks. During my visit with my doctor, he performed an exam to see if my tumors were still palpable. And guess what? They’re not! I’d actually tried just a couple days ago to feel the one that initially sent me to the doctor and couldn’t find it. There may still be cancer cells in there, but what was a hard, easily noticeable lump is now pretty much nothing! How amazing is that? Eat that, cancer!

Now, I’ll still have to get the bilateral mastectomy because of my BRCA2 status, but knowing these awful drugs have kicked the shit out of my cancer still makes me feel good. It makes me hopeful they’ve zapped anything else that may have spread elsewhere in my body, too.

While I was getting treatment today, the lady sitting in the chair next to me finished her last round of chemo and got to ring the bell. When you finish treatment at my cancer center, there’s a bell everyone gets to ring. This was the first time I ever heard anyone ring it, and man, what a sweet, sweet sound. It brought tears to my eyes, I was so happy for her, and so excited to one day ring that bell myself. That will happen around 13 weeks from now, but when it does, I might break the damn thing, I’m going to ring it so hard.

 

The Thirst is Real

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So, I’ve been pretty lucky thus far in my cancer journey. I’ve felt mostly good. I’ve had some really good days, in fact.

But this past week, things did not go quite so well.

As I was coming off my last treatment, I seemed to have a harder time rebounding. I knew this would happen eventually, as they say the effects are cumulative with chemo.

Around mid-week last week, I had a bout with some digestive issues (I’ll spare you the details, but suffice it to say I spent some quality time in the bathroom). This sort of set the ball rolling for the rest of the week’s problems.

On Thursday, I had an appointment with a plastic surgeon to talk about my reconstruction options. As she went through the choices and told me about the recovery time for each, my heart sank. Intellectually I knew surgery wouldn’t be a walk in the park, but I really had no idea how hard and long that recovery was going to be. No option is a good option, in my mind. And I cannot decide what to do, regarding reconstruction. Part of me wants to say screw it and do nothing, but I don’t know that I’d be satisfied with that, either. I’m just thankful I have several months to figure this out.

During said appointment, I was standing there with the surgeon as she measured my chest. Suddenly, things started getting black and my ears had this weird ringing sensation, almost like I was under water. I knew I was about to faint, so I sat down and then had to take a few minutes to lie down, drink some water and gather myself. It was embarrassing and a little scary.

That afternoon, I had my bi-weekly appointment with the NP to check my immune levels and let her know how I was doing. I told her about the digestive issues and near-fainting, and she said I was probably dehydrated and offered to give me IV fluids. I declined. Stupid, stupid, stupid.

Fast-forward to 1 a.m. Saturday morning. I awoke with terrible pain in my kidneys coupled with sciatic nerve pain in my leg (a fun little condition I experience periodically). The kidney pain felt similar to having a UTI or bladder infection that goes untreated too long. It was really bad, and the Tylenol I was taking wouldn’t touch it. Knowing my immune levels were really low at the time from chemo, I feared an infection.

So, I called the triage nurse line that they tell us to use if we have any pain that we can’t manage (among other red flag issues). The nurse couldn’t really diagnose what was going on and told me to come into the ER within 24 hours since the cancer center is closed on weekends.

Unable to handle the pain any longer, my husband took me to the ER around 4 a.m. We were there until around 2 p.m. After blood and urine tests came back clear, along with an MRI (apparently sciatic nerve pain also can be caused by tumors on the spine, so they wanted to rule that out) that showed nothing, there wasn’t a real diagnosis of what was going on. But after IV fluids helped (along with some decent pain meds), I’m pretty sure dehydration was a big factor for the kidney pain. I likely never fully recovered from the digestive episode earlier in the week and my body just had enough.

Of course, I was wiped out from all of that, and had to miss a friend’s party I was really looking forward to that night. I also had a girls’ day planned for the next day with friends and had to beg out of that, too.

I’m feeling better now, but still not 100%. I do have a better sense of the importance of taking care of myself, though, and staying hydrated.

I’m really just hoping this will be a better week. I’m at the point where I’m starting to fatigue of this process. There are some days that I want to just run away and quit. I’m tired of feeling bad. I’m tired of being poked by needles. I’m tired of sleeping horribly. I’m tired of being afraid. I’m just tired of it all.

Staring Into the Eye of the Beast

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Several weeks ago, I had what I would say is one of the strangest experiences of my cancer journey, thus far.

It happened after my second needle biopsy, to test tissue in another spot near my initial tumor. That biopsy turned out to be positive for cancer, so it confirmed this second spot was another cancer.

But, that wasn’t the strange part. That came after the doctor taped me up and I wrapped my gown back around my chest. The doctor left the room and the nurse who was collecting everything used in the biopsy turned to me and said, “do you want to see the tissue sample?”

During my first biopsy, I was not given this option. And frankly, I was so terrified, I wouldn’t have wanted it anyway. But this time was different. I already knew I had cancer, and my surgeon had warned me that this was likely a satellite tumor, which was pretty common. I had little notion that this was going to come back anything but positive.

So, after a short pause, I told her, “yes.”

She showed me the tiny vial that contained some fluid and little pieces of tissue that looked sort of like bits of spaghetti noodles. This was my cancer?! It looked so, well, harmless.

I’m not sure what exactly I was expecting–I guess some black, grungy looking thing or some kind of weird, gelatinous, Ghostbusters-esque blob. Something more ominous, for sure.

Since I’ve started chemo, I’ve thought a lot about that tissue, or rather, its brethren still inside my body. Not long after my first treatment, I actually tried to feel my main tumor. I’d avoided it like the plague once I learned it was cancer, but I thought it might be worth checking to see what was going on. Instead of being a hard, very prominent lump, it was smaller and harder to find. Could it already be shrinking?!

The answer was yes, according to my wonderful oncologist. He also told me that tenderness I’ve felt is likely from the cancer cells dying and other cells coming in to do “clean up.” (I like the idea of my other cells jumping in to help tidy up this mess–thanks, guys!)

I know that because of my prognosis, this shrinking isn’t as big a deal since I’ll need a bilateral mastectomy anyway, but knowing that these drugs that make me feel like garbage are in there waging battle, and freaking winning, makes me feel so good. And if this shit has moved anywhere else in my body, I hope it’s getting the same beat-down going on in my breast. Little victories like this are what get me through the day, and even when the enemy doesn’t actually look all that scary, knowing he’s getting destroyed still feels pretty damn good.