sick and tired of being sick, and tired

When I was first diagnosed, I was preparing myself for a rough year. I was brave as I heard the results on the phone, “you have cancer”. I sat on the floor, holding my children in my lap, kissing their heads, preparing to be strong for them and in front of them. I was brave as I drove over to tell my parents, and then my sister. I was brave as I picked up the phone and started calling different hospitals, begging for appointments for second and third options about what my treatment plan should be. I was brave as I sat hour after hour listening to a long list of drugs, side effects, risks, outcomes, procedures. I was brave as I walked in and proudly presented my newly inserted port for the first round of chemo. I held it together through three months of treatment (until Trump was elected and that day I sobbed in my chair as I felt the chemo being pumped into my body.) I was brave when I handed my 3 year old son a pair of adult size scissors to cut off my pony tail. I was brave 3 weeks later when my husband shaved my head down to the skin. I was brave as I approached a make-up counter in a mall and asked a stranger how to apply fake eyebrows and eye liner. I was brave as I drove myself to daily radiation treatment, even when I started to get burned and blistered, I faced it with a smile on my face. I was brave walking around town bald-headed and putting my experience into words in this blog.  I joked with the doctors as I was getting poked and prodded and injected and sliced in a part of my body that nobody has any business being associated with. I was brave as I woke up at 4am to begin scrubbing my body with antiseptic soap preparing for a double mastectomy with reconstruction. I was brave enough to text pictures of my boobs to a few friends hours before they were removed. I was brave when we sat in my surgical oncologists office and he read us the report that the cancer was worse than we expected, stage 3c. I was brave walking into scan after scan, confident that our treatment plan was working and I was clear of any disease. I was brave, but skeptic, as I pursued a clinical trial and had to work around 2 hurricanes to get enrolled before the deadline. I was brave as I went 4 days a week to physical therapy to be stretched and pushed in my frozen shoulder which is painful. I was brave as I decided to tack on a full hysterectomy during a breast revision surgery.  Walking into a party feels brave, I never know what answer to give when people ask how I am doing.

I was brave as I wrote about my struggle with anxiety while I was awaiting bone scan results. I was brave as I called my mom twice in the last month to bring me to the ER, once for an infection in my ileum that put me into a sepsis reaction, and once for shortness of breath that looked like a pulmonary embolism. I was brave as a few doctors came in and said the good news is your CT Scans are clear. And then my radiation oncologist came in on her day off and said “actually, there is something in your lungs where I treated you for radiation”. I was brave walking into 2 CT scans and 1 PET scan in the last three weeks to confirm that there is indeed a very little but very real something in my lungs. They sometimes call it a nodule, sometimes a lesion or a polyp.

And now, I’m not brave, I’m a total mess. Whatever coping skills I had through diagnosis and treatment are not holding up for me now.  I have a 1cm something in my lungs and while there is a chance that it is nothing, I am living and breathing as if this 1cm is everything. We have decided to wait 2-3 months before a biopsy to see if it shrinks on its own. I am heading to MD Anderson next week to figure out a game-plan. On paper, its too little to worry about right now, but I can’t seem to move forward and stop worrying. Waiting to find out if I have a metastasis is way way scarier and harder than having breast cancer. The sad part is accepting that this is my life and what my future looks like. I will have to go to the ER anytime I have a fever over 100, and any odd little growth in my body will show up on scans and cause alarm. Even if this is nothing, it is a reminder that I’m vulnerable to disease and my future feels uncertain. All I can think about is that these last few weeks before biopsy could potentially be the last few weeks before I know I have a terminal illness. My different doctors have offered a range of advice from “try not to worry just yet” to “perhaps longevity is not in your DNA”. All four of my grandparents lived into their 90s, Gigi is still singing away her days at 97. While I accept that I might not live to be old old old, I am not ready yet. I don’t feel brave enough to face this with grace. I’m not brave enough to assure the people around me that I’m fine.

Being diagnosed with breast cancer never felt like a death sentence to me. There are survivors walking around all over the place, there is so much funding, so much pink! I have felt incredibly supported since I was diagnosed but this part feels isolating. How could anyone else understand what this feels like? I wan’t even supposed to be scanned like this for another year. If it turns out to be something bad, catching it early does not necessarily change the treatment or prognosis. A 1 cm metastasis is still a metastasis. It is hard for me to write this because I could be the boy who cried wolf. I recognize that this might be nothing, but what I do know is this is frightening and I’m losing my cool. A few weeks ago my husband and I were high-fiving ourselves that although cancer changed a lot, our marriage was stronger than ever. This new struggle pops up and we are both challenged. This 1cm feels like a gigantic mountain of uncertainty.

Our family had plans to go to San Francisco for 8 days but the fires put that trip on hold. Then we planned to go to Moab, Utah instead but I ended up back in the ER so we canceled that trip too. So now I am taking the kids to North Carolina and joining my parents on their vacation. There is a desperation for me right now to travel, to literally run away from this problem, to get out of this life for a brief second and pretend that everything is ok. I’m not sure if skipping school and leaving town will make me feel better but it’s worth a try! I still feel the pain of those suffering around the world during this dark time, but I have lost the ability to feel like I am an effective beacon for change because I am fighting for my life and I’m exhausted.

 

 

SCANxiety

I’m waiting for the results of a bone scan that I did today. My shoulder is still giving me trouble, and my doctors decided to do a full-body bone scan. Waiting to hear if my breast cancer has metastasized is worse than waiting to hear if I have cancer. The diagnosis of breast cancer is treatable. The diagnosis of a metastatic breast cancer is not treated, only managed. Metastasis is when a cancer spreads to a different part of the body, which is also called stage 4. From what I have gathered, breast cancer can typically spread to the bones, lungs, liver, or brain.

Metastasis is what I am most afraid of. Sure I have been afraid from time to time in my life, but I have never lived and breathed fear. Anxiety is a side effect of cancer treatment that I didn’t anticipate. I really didn’t even know what anxiety was. In my first appointment with a therapist she asked what my anxiety level was, and I said I wasn’t struggling with anxiety and she responded that she could see my anxiety. I didn’t know it’s name was anxiety, but I felt like I had lost the ability to control my emotions and thoughts. It also feels like the earth is wobbling beneath my feet, and I can’t find my balance or my center. Completing tasks like getting through a stack of bills or decluttering the kitchen counter can feel impossible and put me in a tailspin.

I have been having anxiety attacks that last a few days, and they typically reoccur once a month. I go into a sustained panic attack before starting any new treatment (chemo, surgery #1, radiation, surgery #2, starting tamoxifen, starting arimadex, starting the everolimus clinical trial). I can add a new one onto the list of triggers–scans. I was scanned before I was diagnosed, but I was sure it was a waste of everyone’s time and if they could just drain that infected milk duct, I could be on my way.  I was scanned after chemo and before my mastectomy, but I was sure that the chemo had wiped any trace of cancer from my body just as it had every hair on my body. IMG_6617

The tricky thing about my cancer, other than the fact that it was huge and scary and didn’t respond to chemo, is that it didn’t show up on those scans. So while I am getting scanned I don’t know if I should be praying for a clean scan, or praying that the scan works and shows me something if it’s there. If it has spread, do I want to know and spend the rest of my life heavily medicated and fighting this, or do I want to keep living my life and planning my future?

People keep telling me that I’m handling this so well, “you’re such an inspiration” they say, but the reality is that is only on my good days. When I told my husband I was going to write about anxiety he told me to mention that he also struggles with my anxiety. I can tell him that I’m going into a dip and to be careful with me–but it seems like no matter what he does or doesn’t do, he’s the one who has to pick up the pieces.

My doctor just called- the bone scan was clear!!!! haleluya, haleluya, I don’t know how to spell it but haleluya, thank you beautiful universe.

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The Bounce-Back (compression garment assisted)

It has been two weeks since my surgery, and I have been pleasantly surprised how easy the recovery has been. I spent one night in the most beautiful hospital. Yes, I was pushing the heck out of my morphine button, but I felt like a queen. If anyone is facing a mastectomy or any cancer-related breast surgeries, please consider the Center For Restorative Breast Surgery in New Orleans (www.breastcenter.com). People come to the Breast Center from all over the world, and it happens to be just down the street from me.  This was the view from my bed…yes, my mom brought the prayer flags.

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I’m grateful that the Breast Center was able to grant permission for my Gynecological Oncologist, Dr. Cheng, to do the total hysterectomy during my revision surgery. She removed my ovaries, uterus, and cervix. We took out the ovaries because the ovaries produce estrogen, and my cancer was estrogen positive and so advanced (Stage IIIC) that we decided to be aggressive with our treatment. My other option was to get regular injections into my ovaries to shut down estrogen production, or “chemical castration” as it was so bluntly stated at my first appointment with an oncologist. We decided to take the uterus out at the same time as the ovaries because some of the medicine I am taking puts me at an increased risk for uterine cancer. Another factor in removing the uterus is that any weirdness “down there”  such as discharge or unusual cramping would have to be thoroughly poked and prodded. Dr Cheng took out the cervix too because I had a scare 10 years ago with some irregular cells found during a pap. My doctor was not pushing me to have anything surgically removed, she just presented the options and the pros and cons, and I came to the decision on my own.

About a week before the surgery I went through an anxiety spell where the weight of the decision was really wearing me down. Was this semi-elective surgery the right thing to do, would I regret it down the road, how would my body react, what if they find cancer in the organs they take out, am I being unkind to my body, what if there is a future drug that would stop estrogen production, what if when I’m 45 I want estrogen production back? I was also feeling a deep connection to these parts that brought me my children.

My revision surgery consisted of a nipple sharing procedure, a hernia repair above my belly button, tweeking the symmetry of my breasts, removing some extra skin along my scars, and grafting fat from my thighs and lower back and placing it in my breasts. I also got a bonus shoulder manipulation while I was under anesthesia to help break up post-radiation scar tissue that is causing frozen shoulder. That’s a lot of surgery! I’m so grateful for my body and its ability to heal. I barely have bruise and I’m not in any pain, I just get worn down and tired pretty easily.

The first night at the hospital I was on a morphine drip. The second night when I was home I took half of a percocet before bed. I woke up on my first day home feeling crummy and I had super low blood pressure- like 75/45. I got an IV for extra fluids with a bonus vitamin burst and felt much better. On the 3rd day I woke up with a muscle spasm in my neck and took a muscle relaxer. The crick in my neck was more painful than anything surgically related. My amazing team of occupational therapist, energy worker, and chiropractor put me back together. I didn’t know what to expect going into this surgery, but I’m relieved to know if any of my friends need a hysterectomy I can safely tell them it can be a piece of cake. The nipple sharing/skin grafting is gnarly looking, I’m not sure if they are actually taking or just hanging on for dear life.

I have been under strict orders to avoid lifting anything heavier that a milk jug. I wasn’t supposed to drive for 2 weeks, but I gave it one solid week before breaking the rules. I don’t know what I would’ve done without my husband doing mommy and daddy duty AND taking care of me. I also want to give a huge thank you to our beloved nanny, Becca, who put her personal life on pause and pretty much moved in with us for a week. She pitches in with whatever needs to be done, she anticipates our needs without being prompted, she loves our kids, and she does it all with a smile.

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Our son, who is almost 4, has been going through a bit of a rough patch since the surgery. I don’t know if he is scared about my health, anxious, worried about being abandoned, mad at me for not being able to keep up with him physically, tired of cancer, having real tummy troubles, or just going through typical 4 year-old adjustments.  I have been trying to give him extra love and attention but he is pushing me away, literally. Good thing I’m not going anywhere, I just keep bouncing back in my full body compression garments!

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On being a mom (with cancer)

 

Our baby Luna has started school for the first time. She goes every day from 9-12 to the sweet little Montessori where her brother goes. On the first days she screamed the whole time. I could here her screaming from inside her classroom while I was in the car. She was feeling abandoned for the first time. She is almost 2 years old and she never cried like that before. It breaks my heart to think that I am at risk of abandoning her at some point in her life. I don’t know if it’s going to be in 2 years, in 20 years, or if I’m anything like my grandmother, in 60 years.
The second day she screamed for 30 minutes. Now she walks in sniffling but stops crying as soon as she is in the school. Dropping her off at school for the first time has been a reminder of the deep soul fulfilling gratitude that my kids will have for each other. They will have each other to at the very least say “I know what you are going through.” My son holds my daughter’s hand every morning and walks her to her classroom. He isn’t told to do this, he isn’t an exceptionally nurturing person, he just doesn’t want her to cry.

I don’t believe I’m dying anytime soon, but I can’t help but think about it. There are days when the anxiety gets the best of me. But for the most part I’m able to acknowledge the negative thoughts and release them. I believe that negativity, stress, anxiety, and higher levels of cortisol are unhealthy to my body. I didn’t know what anxiety was, or what it looks like to me, until recently. 

The fear of a future abandoning of my kids is triggered in random ways. While my husband and I are joyfully biking through Barcelona we are saying that we hope one of our kids will study abroad here so we can visit them. And then it hits me so hard that I almost fall off my bike–I hope I’m alive so I can come visit my kid when they study abroad in Barcelona. At dinner my mom remarks on how she will turn 90 on the same day my daughter turns 21 and she wants to have a blow out party. It is easier for me to picture my mom at her ninetieth birthday than it is to picture me at my daughters 21st birthday.

The hardest part about being a mom with cancer is the physical demands. My right arm is still compromised. I have about 70 percent mobility but it tightens back up. I go to physical therapy 4 times per week, and any improvement is lost on the days I don’t go. I thinks it’s the scar tissue from radiation and the burn of the tissue under my arm and around my chest. It has turned into frozen shoulder–it’s almost impossible for me to buckle my daughter into her car seat, especially on a squirmy day.

I don’t technically have lymphedema but my arm is achy, heavy, weak. I wear an arm sleeve almost everyday because it hurts with out it.

My daughter has been insisting that I hold her while I stand up. It will not do to sit on the floor next to her, or hold her in my lap. She wants “mama up!” There is no substitution in her book. I’m going in for surgery tomorrow, and I won’t be able to lift her for 6 weeks. I know kids are resilient–I watched her go through a major leap of getting dropped off at school, but it still hurts my heart that I won’t be able to give her the one thing she wants, to be held. 

It is a continual challenge for me to not dwell on the future pain that my children will feel if I’m not around for a long time, when they are holding a screaming baby and wish they still had me there to support her. Sean and I are still dependent on our parents daily for support. Toddlers are wise teachers in the value of living in the moment. 

While it is certainly hard to be a mom with cancer, the most beautiful thing in my life is that I get to be a MOM. I’m eternally grateful that my diagnosis came after my babies. Tomorrow I will have my uterus and ovaries removed, but it is easier knowing they have done there job beautifully. My ovaries have held these eggs since my birth, releasing them monthly in ancient rhythm. My uterus held and nurtured my children in its womb until they were ready to be born.

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Love Fest

 

Ten buddies from college came down to New Orleans for Easter.  They came from all over the country to hug me, to see my scars, to celebrate that I survived treatment. I wanted our kids to know each other so they brought their families.  This is one of the perks of having cancer. When you say you want something–people jump on it. I am humbled by the effort it took to for every family to come.

Part of this journey for me has been to learn how to live. To live like you are dying–isn’t that a country song?  I’m grateful that I have so many friends that are on board with that philosophy. I didn’t have to convince anyone–I opened the door, and they just showed up. Relationships matter, friendship matters, creating memories and sharing new experiences–all of that has always mattered, and it feels essential now.

People have been reaching out to me in so many different ways and every effort has warmed my heart. Despite the fact that I have cancer, I still feel like the luckiest person. The laws of karma have some sneaky tricks.

I went to a dark place for a few months, and I thought for sure that I would be in the 40% of people who don’t survive my diagnosis. The doctors said that I am clear of cancer and I would say “bullshit, how do you know?” My body was scanned before and after chemo but those scans didn’t show 8.5 cm of cancer. So why should I trust that they would show anything on my body? When I was first diagnosed with cancer, I thought it was going to be a shitty year of treatment, but I didn’t think I would die. Then my post mastectomy pathology came back worse than we imagined. I didn’t realize breast cancer was something that could kill me.

I had to struggle with death and start to embrace it before I could live. My anxiety was through the roof and my emotions were all over the place. Part of my meditation practice is to learn to exist in the space between living and dying. I know that seems like a simple concept but when you are fighting for your life, it’s hard to let go and just be. It was hard for me to write during my dark days but thank you for hanging in there until I was ready.

I am now exploring different options that I can do in addition to the “standard of care” that will improve my odds. Love and happiness is a biggie so thanks again, my Love Fest lovers. I’ve been deepening my meditation practice. I am having a total hysterectomy in July when they do phase II of reconstruction. I’m doing a clinical trial at MD Anderson that starts in September. I’m doing a micro-biome study, which I am really excited about but will have to explain in a future post. I also have a radiation post that I wrote and never sent so that will be coming shortly. I’m on the hunt for a nutritionist that can guide me to a cancer fighting diet that is effective and that I can actually stick to and be happy with. I’m also looking for an integrative cancer place to go to detox from chemo and radiation.

Path-ology

My heart is torn. Do I make more posters for the Women’s March that we will be attending in 2 hours-or do I sit down and write a post about my cancer? Several people have kindly let me know that I don’t need to take on the burden of our country right now. That I have another fight to fight. I can’t seem to separate the two battles in my heart or in my body. I made it a goal to avoid any inauguration news yesterday but the waiting room at the doctor’s office had a glimpse of Obamas getting onto the chopper and waiving goodbye to us, to me, and a sob welled up in my throat and my body heaved to keep it all in.

Last week my parents joined me for a post-op appointment with my breast surgical oncologist. He started by confirming that the surgery was a success. They removed the entire tumor and all possible lymph nodes. The tumor and lymph nodes were sent to a lab for an extensive pathology report. The report said the the tumor was 8.3 centimeters and it was all cancer. At one point the doctors thought that maybe the large size of the tumor was due to inflammation and precancer.  They removed 20 lymph nodes under my right armpit. Eighteen of the 20 lymph nodes had cancer in them. The chemotherapy might’ve shrunk the tumor by a tiny bit, but it didn’t work as well as they expected. I am reclassified as Stage 3C.

It was sobering to hear that this thing I’m fighting is worse than we imagined. My doctor called it a beast. We were filled with gratitude and fear and we all wept together in that room. And now we march! I march with my sisters in New Orleans. I will march into radiation. I will march into more procedures to remove ovaries, and whatever else they may need to take.

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Over the hump(s)

Just a quick note to let y’all know I’m ok. I’m good.

It’s been a week since the surgery and I’m making my come-back. I’m feeling pretty good and taking my new body for a spin around the house here and there. Yesterday I stopped taking the pain killers and could feel the fog lifting. That percocet is no joke. The pain is blinding and then 8 minutes after a pill it feels like the pain is bubbling up off my body and floating away in tiny bubbles. But 2 minutes later a fog rolls in and I can hardly keep my eyes open. Because of the drugs, I don’t remember too much of my 4 night stay at the surgical center.

My amazing surgeons were successful in their mission of removing the cancer, removing the other healthy breast, and making me two new ones out of my tummy fat.

At my post op appointment yesterday they took my drains out! I was expecting to have them in for 2-3 weeks. Each day I can walk a little bit straighter, reach a little higher, stand a little longer, all of those exciting things we normally take for granted.

Leading up to the surgery I had several women that I barely know insist on showing me their newly reconstructed body. I was honored that they felt comfortable enough to share something so intimate with me. I would look and try not to wince and agree with them that they looked fabulous. Now I myself am insisting that anyone that walks through the door see my new boobs, my new belly button, my giant scabby scar from hip to hip. And I think it looks fabulous. It doesn’t look like my body used to look. It looks like a sci-fi movie where the dr hacks off one body part and sews it somewhere else. But it also looks like a long happy life and that makes me happy.