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. 

Yup.

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!