Saturday, March 12, 2016

People Are So Good

Violet Jo and I-both recovering from a cold
Today was a good day. After spending the afternoon at the museum with my family I decided to take my 7 month old to the grocery store by myself. This is a lot for me since my energy level is so low and especially since I haven't been to the grocery store solo in 2 months. Earlier this week I picked up my 5 year old from preschool and tried to take him to Target for a few things, but I couldn't do it. Just driving to his school and getting him in car was more than I could handle that day. I felt I had more energy today (mostly I was being stubborn and just wanted to prove to myself that I can do it) so I took Violet to the grocery store.

As I walked around the produce section it really hit me that I haven't done this in so long. I've had to rely on others to do that for me. Do you know how that feels? I like to do everything myself and before getting cancer I never asked for help. I never really needed help. So I would say it is incredibly humbling. As I made my way down the aisles of our local grocery store, everyone was so friendly and smiled. I sometimes forget what I look like and I appreciate the smiles and nice comments. Just a normal cancer mom grocery shopping with her baby! As I finished loading the car I was so proud of myself. I did it! Something I'd always taken for granted and today I was so happy I could do it.  I am so grateful for the energy I'm gaining back after all of my infusions. I always feel like it's an answer to a prayer when I am able to do my "mom things", but know that in a few days when I receive my next infusion I will go back to relying on others again. All these feelings made me reflect on the service I've witnessed the passed 2 months.

If you've ever been lucky enough to be on the recipient end of so many acts of service, then you will know just how wonderful and good people are. I knew this type of thing existed, and I've always tried to be thoughtful and serve others as needed, but I never knew what it felt like to see what real love and charity can be. 

The first month of being diagnosed I would have more than one letter in the mail, a package on my doorstep, and dinner brought over by neighbors EVERY DAY. My entire hallway was lined with about a dozen very thoughtful packages to help me through chemo. Even now, my doorbell rings with a visitor, someone asking to bring dinner over, a text asking to have my boys come play, or a thoughtful gift filled with love and encouragement, etc.  still, every day.

I am reminded on a daily basis how GOOD people are. I am reminded on a daily basis how much I am loved by not just family and friends, but by my Heavenly Father. He has sent angels to me and my family. It's so overwhelming- it's so incredible. My church has a large women's organization called Relief Society. I love being part of this group of women because it gives me an opportunity to act as a disciple of Christ- finding ways to help, teach, strengthen, and uplift one another. We don't just sit together at church each Sunday- we follow Christ's example and act with love and compassion for one another. The Relief Society has what's called a compassionate service leader and she is summoned when there is a woman in a particular situation where she is in need like she had a baby or she's ill or a death in the family, etc. The compassionate service leader finds the needs of the woman and asks for volunteers to help. I don't know how to describe what happened when I found out I had cancer but to say there was a swarm of volunteers. My friends and neighbors have been some of my best supporters the past 2 months. They've arranged weekly dinners and I have 4 full sheets of paper filled with these women's name and their availability to watch my kids as needed. When the compassionate service leader brought these list of names to my door, we both just stood there and cried. She said she's never seen such an outpouring of women who want to help. She said she gets texts everyday of women wanting to bring dinners over and of women who still want to add their names to the list of babysitters. The support that I've received from these women in my life has made such a difference in my attitude during the hard days. I feel like these women have my back when I'm not strong-they've lifted me up in more ways than I can describe.

But not just my friends and neighbors- my family as well. My parents have traveled by car or plane to be here for each of my treatments. They've been me when I couldn't be me. They took over my home and filled our kitchen with food too. They entertained the kids so Matt could work and they made sure my needs were met. I'll forever be grateful for supportive parents who have also strengthened me mentally as we took on each new day-especially in the beginning when we weren't sure what my scans would reveal. Matt and my parents have been my #1 support team. They're my caretakers. I feel like I'm burdening and inconveniencing everyone, but these people are still by my side-we're in this until I can say there is no longer evidence of breast cancer and until I can go back to being a healthy mom again.

It really does take a village.

Saying thank you can't ever be enough. I wanted to post this so others can know that people are so good. And from their example makes me want to be better too. I wish I had a photo of every single person and thing brought to our home so I can just show you how my family has been touched by so many.

"Do we believe in Angels? Yes! We believe in angels-heavenly messengers-seen and unseen; and earthly angels who know whom to help and how to help."-Russell M. Nelson

Wednesday, March 9, 2016

IBC: A Diagnosis

I knew I had cancer before I really knew I had cancer. My symptoms showed up the evening of December 16th, but I wouldn't get the confirmation from a skin biopsy until January 11th. Every day I had the sinking feeling of "I have cancer I have cancer I have cancer" but no one believed me.

How does this happen? How did I go so long without being diagnosed?

Rare diseases get misdiagnosed, especially when you're young. "But it's so rare" "No one in your family has breast cancer" I was told this so much by so many doctors, I wanted to punch the word "rare" in the face!


I was examined by 5 doctors and NONE could believe I had cancer.

So what do I say to my friends who may think they have a symptom of something, anything. Listen to your instincts. Go with your gut. No one knows your body more than you do. Doctor's are amazing, but they don't know everything. If I would have listened to these doctors and family members and gone with the attitude of "it'll get better over time" I would be terminal- I wouldn't have a fighting chance.

Ok Lisa, so what's your story? I know so many are wondering how I knew I had breast cancer. And all my young mom friends are worried too.  If you've visited me over the past few months I would have sat down in my living room and told you this story in more detail. I have gone through this so many times in my head, trying to catch something new or to give me the benefit of the doubt that I did everything right and I have come to the conclusion that I have no regrets, except one. I'll get to that in a minute.

On a Wednesday night, as I was putting my kids to bed, I noticed an itching sensation in my bra. It wasn't until the kids were all in bed that I sat down to see what was going on. What I saw was a large bright red rash, under my skin. Now, at this time I was nursing Violet 100%. I didn't even have a bottle in our home. There was a lot going on at this time: Violet was teething and not nursing well, I was run-down taking care of my 5 year old, 2 year old, and 5 month old, the husband was working 10+ hours a day and we were right in the Christmas season where everything felt a bit stressful. When I saw this rash I immediately thought mastitis because everything added up. When I looked up the symptoms of what my rash looked like, yup...I either had inflammatory breast cancer or mastitis. Inflammatory breast cancer symptoms are similar to that of mastitis (a breast infection usually caused by breastfeeding). The reason that inflammatory breast cancer makes itself known as a rash is because the cancer blocks the lymph vessel system and within hours, a rash is formed. Obviously it was mastitis. But that's when my instincts started to kick in. I was in no pain and I had no fever...I didn't feel sick at all. They say mastitis feels like you've been hit by a train, all I had was a stupid rash.

I called my OBGYN the next day, but she was out the rest of the week and the following week for Christmas. I thought I'd give it another day to see if it would subside. It didn't. That Friday evening I went to the clinic by my house to get antibiotics to treat my "infection". My family was coming up on Sunday to spend the week together for Christmas at our house and I figured I'd better get this taken care of sooner than later.

I told them I was sure it was mastitis. The doctor examined me and said to come back in two days if the antibiotics didn't work **looking back, I think he had a feeling it wasn't mastitis either. The antibiotics didn't work. I went back again Sunday evening and saw a female doctor at the clinic. She was very thorough in examining me. She advised to put hydrocortisone cream on it and make sure I schedule to see my OBGYN in a week. I did. When I called my OBGYN's office the next day, the medical assistant asked if I wanted to see a doctor at a clinic in salt lake (if I was really worried about it) and I said no. The cream completely stopped the itching and redness so I thought it was getting better! Some weird skin rash **it wasn't.

The female doctor at the clinic called me a few days later to "check in" and see how I was doing. I let her leave a voicemail and didn't feel the need to call her back. **Looking back, I realize she must have had a gut instinct too, or rather a medical degree.

So now things get complicated. At this point it's been a week and just as my "rash" was looking better, other symptoms started to happen. Christmas day I was so exhausted. I couldn't get out of bed, just so tired. We made it to the movies that day to see Star Wars (Oh yeah!) and it was then that I noticed a pain on the side of my breast. Ugh. Since the rash appeared, Violet didn't take that side very well so I thought, oh no I'm getting a clogged milk duct! And that's exactly what happened. I got a clogged milk duct. **looking back-the clogged duct was caused by my growing cancer.

3 days after Christmas, Monday morning, I saw my OBGYN. I was so excited to see her. I trusted her, she knew me because just 5 months before all this she delivered Violet. She had given me an exam after Violet was born so I felt confident she'd have an answer for me.

She didn't. She even said "I don't know what this is, but it's not mastitis". Then she addressed my clogged milk duct. My lymph nodes were swollen because the milk was "congested" and all backed up. When she gave me a  breast exam she felt a large lump and said "this is too big to be cancer".When she said that I chuckled because I really thought the same thing. I thought my lumpy breast from breastfeeding and having a clogged milk duct. I had never felt a lump before. She had just given me an exam a few months before and there was no lump so I wasn't concerned it, but I was concerned about the rash! She said if I wanted to examine the lump further I could get an ultrasound today or wait a week and see if it would improve. She didn't tell me what to do, she gave me an option but at the same time didn't act with a sense of urgency.

This is my ONE regret. I didn't say it. I didn't say what I was thinking. My one regret was withholding what I was thinking: "I'm afraid this could be inflammatory breast cancer. I have all the symptoms. I know it's rare, but I don't know what else it could be. Let's figure this out together."

I didn't push that concern on her. She moved the appointment along and told me to call the lactation specialist if I needed guidance to treat my clogged milk duct. I didn't. I wasn't concerned about the stupid milk duct, I want to know what this skin of mine was doing. I know me, I know this isn't normal. People get weird rashes all the time, I don't.

I was disappointed. But I spent the next few days treating the clogged milk duct. I tried feeding violet the best I could on that side, I used a breast pump, and I used a heating pad to try and open a clogged duct. It was painful and annoying, but I did it. As I emptied the milk out, and really massaged it that's when I noticed that same lump. It wouldn't empty. It was pretty big, not painful. I thought that was the clogged duct. But after a few days and my symptoms were better, that lump was still there. Now I was concerned. At this point it was about 2 weeks since the rash appeared. I went from a healthy nursing mom to having  a cancerous rash and growing cancer tumor in two weeks.

This is when I really started to pray. I needed to know what was going on, what did I need to do? I didn't want this to "be" something, I just wanted to wake up and have it all go away. This is when I followed my gut, the spirit, answers to prayers, or a little conscious voice that told me to not let this go. Don't wait another day!

I contacted my OBGYN with my concerns and worries. She told me to go to the same-day Dermatology Clinic at the University of Utah hospital. I did.

It was a Monday afternoon, Matt came home from work early to be with the kids so I could drive downtown and take my time at the appointment. I felt peace the entire drive there. I knew then. I knew it was cancer. As I drove I felt a relief, like FINALLY I'll be able to know for sure.

I saw a resident dermatologist at first. He was very thorough, but again, couldn't come up with what it could be. So at this point my skin didn't look like a rash, but it had the "dimpling" effect. As he was racking his brain to come up with what options he had for a diagnosis or a treatment plan I knew he was trying not to say the word "cancer". I did though. Let's get it out there! I told him I was here because I'm worried it's inflammatory breast cancer. I felt like that triggered something like a snap of a finger and within minutes the attending dermatologist came in. She was wonderful. She said something like "maybe you started to get mastitis..." you know, thinking of what it could be besides the WORST CASE SCENARIO that I knew it was. I asked for a skin biopsy.

Let's do this!

So I got the skin biopsy done. It was sent to be tested by the pathologists. The doctor said it takes at the most 7 days for the pathology report to be complete. On day 3 I called the dermatologist to tell me any news or if there was any way to speed things along. I had to know! How does one wait to find out you have cancer. How!? I needed them to hurry, I wanted them to know I really knew it was cancer, but had to wait on them to tell me a yes or no. I guess the staining takes time. I tried to be patient. On Friday evening around 5pm I looked on my online medical chart and I saw that my pathology was sent from the dermapathy lab to be tested for estrogen/progesterone.

Google google google.

Hysterical is an understatement. I called Matt who was still at work and told him what was happening. At this point the clinic was closed for the ENTIRE WEEKEND. This was worst than a phone call telling me I had cancer. I had to sit on the fact that my cells were being tested for breast cancer hormones, but they didn't call me first to tell me what was going was this standard testing? Was this what they always did? I didn't know, but I did know. Like I did in the beginning. I did know it was cancer, but now it was actually happening. It was actually going to be confirmed, I didn't know what to do or think.

I asked Matt for an annointed Priesthood blessing. Matt's given me many blessings of comfort before, but this was different. It was Saturday night and my brain and emotions were going back and forth. Is it cancer? No. How can it be. Me? But why not me? People get cancer, I really think it is. But it's not. It can't be! Statistically speaking, it could be something else before it's cancer. It can't be. But it probably is. Oh my gosh, what if it is cancer? I don't remember the words of Matt's blessing as much of the feeling it left me with.

Everything is going to be ok. It's going to be hard, but it's all going to be ok.

Peace. My emotions settled, I knew what was coming. I felt ready for it, I was prepared for bad news.

2 days later, I got the call from my poor dermatologist who delivered the bad news.

"Unfortunately we did find breast carcinoma in the tissue....." I feel so bad for him for delivering this news to me. I had just put the kids down for a nap and he called me. What a tender mercy that was. I was able to ask questions and we decided I wanted to go to the hospital to speak in person.

Having just heard the official news I had been dreading, I experienced something between shock and a rush of adrenaline. My heart and mind was moving forward really fast, but my body couldn't react. I sat on the floor in shock until Matt came home. After a few phone calls I was headed out the door, but not before kissing my sweet 2 year old Nicholas who was napping on the couch. Our whole world changed so fast and in his face the reality hit me. I kissed him and cried. In his innocent face all I could think was this sweet boy's mom has cancer. As a parent, a mom,  I am constantly teaching and protecting my children-which has always brought me joy. I hated that I was the one to bring suffering to our family. That feeling was so raw and awful, I think anyone who has cancer can say they feel guilty for bringing down everyone around them with this horrible news/disease. We live in a world where we can make our own choices everyday, and these choices can have a positive or negative consequence. Unfortunately for me, cancer was not a consequence of a choice and as any unexpected hardship in anyone's life, it's easy to feel "it's not fair". It isn't fair, actually because it's not part of the plan.

Cancer is never part of the plan.

There's not anyone to blame for me getting cancer. It just happened.

As I talked to doctors about my disease they all said the same thing:

"It's so good you pushed for that skin biopsy. Good thing you followed your gut."

Most women go months with this disease before being diagnosed. They wait it out to see if things improve or medicines work and by that time it's too late. Most doctors don't know how to diagnose inflammatory because it's so rare-they don't see it as often as other breast cancers. After I was diagnosed I spoke with my OBGYN and she said in over 10 years and seeing 100s of women, she's never seen inflammatory breast cancer and even my "rash" didn't look textbook.

Rare doesn't mean never.

I hope that these details in my diagnosis story will help someone in the future. I think most people my age don't have big health problems, and if you do than you may not know what to do in these situations. Sometimes it's hard to find a doctor or to make an appointment. It can feel inconvenient or that you're "wasting" everybody's time. I like to think that all doctors genuinely care and want to help their patients. They are there waiting for you! They are there to help you when you're ill. What if I would have waited another week or two to see the dermatologist? I had every excuse to wait, it would have been so easy to put it off. Like, I have 3 kids age 5 and under and I have no family that live close by to watch the kids. See what I mean? (I thank God everyday I have a husband who puts me first!)

It's so important to advocate for yourself. Ask questions. Be smart. If you have a doctor who seems like they're rushing the appointment, don't let them leave until you're done. I'm lucky to not have doctors like this, but I know some doctors make their patients feel that way. And this can lead to a misdiagnosis. You're paying them for their time so they shouldn't leave until you get the answers you need. 

Advice to my friends who haven't had kids yet, but are my age-find an OBGYN and get an exam. Paps-mere and breast exam. It's easy to find a doctor and schedule an appointment. It's covered by insurance because it's preventative. It's the responsible thing to do, you need to have some sort of baseline. Then if you ever have a new concern or worry then you can call your doctor to be seen. Your OB will know you and your body and you can work together to meet your concerns. My advice to my young mom friends- If you're in the stage of life where you're having children then you should already know you're body pretty well. The changes to your body (your breasts especially) when you have kids is something you should be aware of, whether you're breastfeeding or not. If you're not breastfeeding and notice changes to your breasts make sure you and your OBGYN are aware of it. Sometimes it can be hard to tell what is normal or what's not so that is something to talk about with your doctor. If you ARE breastfeeding, this is tricky. From my story you can tell that I wasn't aware of the lump until I was really trying to empty my breast. So if your little one doesn't take to a side well, make sure you empty it as often as possible.

I like this image of oranges representing 12 signs of breast cancer. EVERY woman needs to know this. If I saw this in the beginning I would have had a higher sense of urgency to be diagnosed. Hope this information is helpful!

Wednesday, March 2, 2016

A New Cancer Patient

I had so much adrenaline that first week of being diagnosed.. Waiting and meeting with doctors, getting scans, waiting for results, hearing bad news after bad news, spending all day for days at a time at the Huntsman...all of it made me want to run. I'd pace, do lunges, I just couldn't sit still. I was so anxious, looking back it really is a fog. Mostly shock or just feeling like it was a bad dream. I didn't feel sick. I didn't feel like I was a new cancer patient.

Walking in that first day, I felt brave. Once I was in there I felt safe. I felt these people care about me. I was at ease the entire time.  Everything was fascinating. I felt grateful. I was humbled this day. I felt like I was in the hands of these people, they knew what they were doing and they took care of me. It was only a few hours between scans and meeting with two oncologists and we had a plan. These doctor's job is to save life. That's what they do. The medical staff-doctors and researchers, were all set up for me. It gave me a much needed "let's do this!" attitude as I prepared to become a new patient at The Huntsman Cancer Institution.

Have you ever had a mammogram? I haven't. 

Before meeting with my oncologists I had to do some testing. Matt and I brought Violet for our entire day spent at Huntsman. I needed to nurse her right before getting some testing done.
Before walking into my mammogram I sat with about 4 other robed elderly women and I filled out my "new patient" forms. We sat in a small waiting area. These women, in my mind, were there for their routine checkups. They all looked nervous, no one talked to each other. I was at ease and tried to make eye contact and smile. It made me chuckle thinking that I was the one there with full blown cancer. I was the one going in for my first mammogram knowing I was going to see tumors and tumors of cancer. Maybe they did too, I don't know but that's what I imagined.

It all felt eerie for a second, but I reminded myself how happy I was to be there. The best of the best were going to be taking care of me. And the mammogram was definitely not even close to how some women dramatically make it seem. Not bad at all you guys (girls). 

I remember meeting many medical professionals that first week or two. All kinds. Dozens. And I shared my story with anyone that would listen, and they all wanted to listen. They all let me speak and asked questions. Again, I was running on adrenaline and probably still in shock so I'm sure I over-shared, but most of the medical staff I saw that day were my age so they wanted to know more.

"See my rash? That's inflammatory breast cancer. Make sure you remember this so if you ever see it on yourself or someone you know...its IBC." 

That was kind of my theme that week.

After the radiologists had time to review my 3D state of the art cancer mammogram, I had an ultrasound. 3 different radiologists were there. Huntsman is part of the University of Utah Healthcare program so it's a teaching facility. I love that. Let's all learn together. Let's see what breast cancer looks like.

Even seeing the black and white and gray imagines on the ultrasound screen, not knowing too much of what I was seeing-it was ugly. So many big and small tumors and lymph nodes swollen that shouldn't be. So this is what I felt in my breast, this is what's been growing inside me for just a few short weeks. Ugly ugly. I hate you.

The radiologists were very informative, described in detail what we saw. (I have a pathology report so I get to read in detail what they found in my right breast, you know...a little light reading)

You know what makes IBC different? The way it grows. The cancer (some don't have  a lump, I did) grows in a webbed-like form. Really hard, knotted, cotton-candy looking cancer. And it grows fast. Spreads fast. My one lump measured 4cm, which is big. But the entire region covered in cancer tumors/calcifications covered an area measuring 12 X 16 cm. 


All filled with fast growing cancer.

We knew I had IBC from my skin biopsy, but my doctors wanted a needle biopsy done from my one large tumor and from my large lymph node. The more you know about the cancer the better the treatment. It was so weird watching them do this. I could see the punch needle in the ultrasound screen going into the big black mass and "punch!", grabbing what was needed and removing it. I remember sending Matt away for this (mostly because Violet needed a nap so he went to walk the hall until she fell asleep) but also I knew it would be icky to see and I tried to spare him. He loves that kind of stuff though.

**I will say this. If you ever get a breast punch needle biopsy done, the procedure itself isn't bad, but there is lots of bruising and pain to follow. I think it took a full month for that bruising to go away. The more you know.

I walked out of the breast care center with an ice pack under my arm. I felt like I probably just lived most women's worse nightmare. Matt had made friends with an elderly man in the waiting area. After talking about engineering for a bit, Matt learned his wife had breast cancer twice and was doing well 27 years later and they were there for her annual checkup. When I saw them three waiting for me outside the clinic, they (with tears in their eyes) gave me hope and advice. I'll never forget their kindness, their words, the way their hugs felt-the most sincere. We were beginning a battle that they've already endured for so long. They knew what we were feeling and what we'd have to go through. So many don't, they did. I'll always remember them.
Waiting for the elevators
I knew the breast care team at the Huntsman squeezed me in to meet with two "high demand" oncologists that day. My chemo oncologist Dr C and my surgical oncologist Dr M (I decided not to use their real names). I was getting all set up by the medical assistant and she said "did you have trouble parking?" as she saw my high pulse rate. Really? I laughed because this whole cancer experience is just ridiculous. She also added "cats and cashews" to my list of allergies. I see this same MA sometimes in passing and smile and laugh. She did once help my nurse get the blood drawn from my port during my last chemo blood testing (after unsuccessful attempts I had to lay back in the chair,which ended up working) so I now feel she has redeemed herself from this first day.

Waiting for these doctors really upped my anxiousness adrenalinness and feelingness of I could still just runness up the mountainness. Somehow that option made me feel better. 

The beautiful Huntsman Cancer Institution is built at the highest point of the mountain, looking over Salt Lake City. It's something. Big windows over look the valley, the other direction...the tops of the mountains. I sometimes see people on snowy trails, biking or running/hiking. I love Utahns.

At this point I felt like I could run as far and as high as I ever could. Hadn't eaten in days, but full of adrenaline. Full of cancer. Stupid cancer.

But I just paced up and down the room-back and forth. I think I did lunges too. At this time the door opened but it wasn't my doctors, it was my social worker. I truly love this woman! We chatted, she kind of asked questions to where I was at. Looking back I realized what they did. The doctors (I'm really guessing) told her I had this really rare and aggressive and possibly stage 4 cancer and I'm young with a million babies and so she needed to see where I was at and if I was capable of accepting my diagnosis. What was my support like at home? What did I need? 

I assured her I was well taken care of. I told her I knew I had IBC (did the doctors already tell you? No, I just know.) 

She took Violet for almost 2 hours as we spoke with our doctors about my diagnosis. This was when I realized I had a team. This team at the Huntsman were now part of my cancer journey, my family.

Dr C and Dr M gave me a quick routine physical exam at the same time to save time. It was funny. 

This whole day I joked and made friends with so many of the staff, it helped ease the seriousness of the day and I don't know, maybe subconsciously I wanted everyone to like me because I have cancer but still wanted to feel like myself.

They both agreed my lymph node didn't feel very swollen. I don't know if this was necessarily good news or news that even mattered but "it could be worse" (I say this so often now it's actually becoming annoying, ha!)

This is when Dr C re-entered with his nurse. I love my nurse. 

Over the last two months I've been able to observe these people. I can see how this team works, they work closely. All respectful of each other. Everyone is well informed. My team is everything to me. We're working together to save my life.

Dr C then sat next to me, as close as one could get. And pulled out a fresh white piece of paper. We then went over my diagnosis. We went over "the plan". What we know. What the next steps were. With each line, he paused. He let me react, ask questions, breathe, and in a way give him the permission to continue. What an amazing doctor. This method is how he's given me all my good and bad news. It works for me. No one is rushed, he care about me. We've spent hours in that stupid tiny room. Again, I'm surrounded by an amazing team at Huntsman.

Here's what we know: 

I have inflammatory breast cancer. We caught the cancer before it spread to my bones, brain, and lungs. My blood and heart are good and healthy. There are two very small (1X1cm) spots on my liver found on my CT scan-making me "early early" stage IV. Technically stages can change and we're counting on the chemo to wipe the cancer out completely, especially those small spots on my liver.

That's the plan.

Stage 3 breast cancer can be curable.

That's the plan.

(See how positive we are here?)

It's important to know that IBC is always either stage 3 or stage 4. It is never stage 1 or 2. Stage 3 means it has spread to the lymph nodes and stage 4 means it has spread to other parts of the body. There is no "early detection" for IBC as it can't be seen be in mammograms or ultrasounds until it's made itself known as a rash and when it makes itself known it's a stage 3. It's important women know that-don't wait too long to be seen by the right doctors if there is any change in your breast. Wait the longest one week before being seen by an OBGYN or a family doctor.

If you know about breast cancer, here's more information from pathology. My cancer cells are grade 2. I am estrogen positive (less than 10%) and progesterone negative. I am HER2 positive. When you have all this cancer bad news thrown your way you are forced to nit-pick through any good news you can find. My pathology report gives some good news.

  1. Grade 3 is the most aggressive/fastest growing cancer cells and mine is a grade 2. See? Nit-pick.
  2. Estrogen positive means the cancer is fed with estrogen. There are hormone targeted drugs that with HELP stop cancer growth/reoccurrence. The more drug options the better.
  3. My cancer has receptors on the HER2 cells which makes me HER2+. This has been one of the biggest breakthroughs for breast cancer in the past 5-10 years. When you have IBC you want to be HER2+ because the cancer is already aggressive in nature. The chemo drugs I'll be taking for an entire year (herceptin) will help so much. Again, more drug options that are known to work. This is a huge blessing.

We're staying positive at the Lyon house. 

I will receive 16 rounds of chemo. Beginning January 22 and ending June 3. I will have a mastectomy followed my radiation. Followed my more chemo for a year.

Why have chemotherapy before surgery? With IBC chemotherapy is always done before surgery because  it shrinks the tumor and "contains it" first (remember the web-like knitted structure?) This has proven to be the most effective way to get all the cancer during surgery. It also gives me the chance to see how the cancer responds to the chemo. Usually the best prognosis goes to how well the cancer responds to chemo. (Keep praying my chemo will be effective).

I've had four rounds of chemo so far and my once 4cm tumor has shrunk. So the chemo is doing its work. I can feel the once hard cancer spots softening-it's all shrinking and dying. So our plan is off to a good start!

A big reason I waited so long to share this with others is because it's not good news.. I know very well what can happen to me within a year or 2 or 5 or 10 or even 20 years. IBC has a very low 5 year survival rate compared to other breast cancers. 80+% vs 40%. (but remember all the positive things I have going for me listed above!). There is still so much to learn and to be researched. I'm reading everyday and still learning about this disease. I feel education is like the armor I wear going into this. When I've prayed for comfort, I found myself reading about IBC and to me, that was comforting. It doesn't seem so big and scary if you know what to expect. We expect the best outcome, but always preparing for the worst or any setback.   

1 in 8 women will get a breast cancer diagnosis in their life. Did you know that? I feel it's important to know that. I can't help but feel like there will be more women I know that will walk in my shoes at some point in the future. Cancer can be so scary (can be? no it definitely is), but the more educated we are the easier it can become. Maybe I'm going through this to help someone I know to go through it sometime in the future. I know I've relied so much on those that have experienced cancer in their lives. Young cancer, aggressive cancer.

You truly don't know what cancer is like unless you've experience it yourself.

So here I am experiencing it, let me help! I'm still a novice but I'm learning and experiences so much of this disease each day.

Email me at anvlyon@gmail with any questions or comments.

I want all my loved ones to know that I'm doing well. That even though this cancer is scary, I am being treated at a top notch research institution with the best doctors and receiving the best care with the right medicine and regimen known to give me the best prognosis. We're easing into this new lifestyle and are truly experiencing so many blessings and tender mercies from this experience. We have a plan and expect it to work. We love you all and have felt the needed love and prayers everyday. Thank you so much!