An Update: Halfway through Taxol

I started this blog knowing I wouldn't be very diligent with updates (sorry guys!). During my chemo experience I've learned that when I feel sick I stay asleep in bed and when I feel well, I like to spend time with my family and do something. Sitting and writing about cancer isn't how I want to fill my time mostly because that's what I'm constantly thinking about. I know it's important to update family and friends, so now that I feel a bit better I thought I'd update you how things are going as of today.

---TREATMENT---

I am on three new drugs I started on March 17th called Taxol, Herceptin, and Perjeta (THP).  I have Taxol once a week for 12 weeks and I have Herceptin and Perjeta once every three weeks. I've been going to the cancer institution every week, sometimes just for Taxol and other times for all three. I'm feeling a lot different than I did on my previous chemo. Tomorrow I receive #8 of the 12 Taxol doses. Knowing I only have 5 more chemos left makes me feel pretty good, see, I don't like Taxol very much...nope. Also, after those 6 weeks my hair will start to grow back. That is probably the strangest thing for me to think about.

---SIDE EFFECTS---

Now that I've had 7 Taxol infusions, I feel as if I know its effect on my body.  I know what's "normal".

Tingling/itchy hands and feet
nose bleeds
extreme fatigue
no appetite
dry skin
what looks like "age spots" on my face, arms, and legs
my fingernails and toenails are becoming more sensitive (hoping they don't fall off!)
muscle aches
arthritis

Taxol's side effects are pretty harsh, so my doctor has me on a lower dose weekly schedule versus a higher dose every three weeks. As exhausting as it's been going each week, I'm glad we are doing it this way because side effects of this treatment can be worse than the cancer itself. Since I've only ever gotten Herceptin and Perjecta with Taxol, I'm not exactly sure which drug causes which side effects, but getting Taxol weekly is draining me of all my energy. When I say extreme fatigue I mean it. 10 hours of sleep is not even enough to keep me from yawning all day. 10 hours! Can you imagine?  If I wake up sooner than that then I just feel more sick - nauseated and exhausted. And I wish a nap would give me more energy, nothing helps with that...even exercise and eating the right foods. I can last an hour or so before I need to rest. Blah!

I am educating myself on what kinds of foods are best to eat if you are going through chemo or just have cancer in general. Sometimes I feel like I'm in school again, I love checking books out of the Hunstman Learning Center ;) I would love to share in another post about what I've learned about food and cancer. Since I have zero appetite (I feel like I'm full and I get nervous to eat "just to eat" because I hate feeling nauseated) I try to only eat things that will give me the right nutrition I need. Obviously proteins with each snack/meal and other plant based foods. Carbs are really important too, I just eat when I feel up to it. My potassium is extremely low and instead of taking pills for it, my doctor told me to eat more potassium-rich foods. I've always loved eating well and have been aware of the food I'd eat (especially during pregnancy and post-pregnancy losing baby weight), but going through chemo you can't just eat whatever everyone else is eating. It's taking more of an effort - mostly because I also have a husband and three kids to feed so I have to just jump on my own meal planning. We're making it work :)

I get lots of aches and pains, the most recent being my leg and arm muscles being extremely sore. I have been doing some exercises and stretching at home everyday for over a month (getting my push-ups and yoga stretching in before surgery knowing I won't be able to do that for a while) so I know the soreness is from the Taxol. Each day is a little different, and I can take Tylenol as needed (I could get pain meds, but I do all I can to not take any medicine). I often daydream about a serious detox and sitting in a sauna when I'm done with chemo. It's going to be so good to get this toxicity out of my body! I had a tender spot around my sternum and after an exam my doctor told me it was arthritis connecting to my ribs. ARTHRITIS! Now I'm officially an old person, this chemo is aging me so bad.

I am so glad that Taxol doesn't make me foggy like my AC treatment did. I feel more like myself and I am physically able to do more too. This treatment is cumulative so I am aware I am a tiny bit more tired and nauseated each time, but I'd rather feel those things than feel like my brain is fading away! I'm grateful for my good days. Days 3-4 after chemo I am usually in bed all day, but all the other days I can do a lot. If you see me out and about then that means I'm feeling pretty well! Matt has even gone to work and I've been able to watch the kids, make lunch, etc by myself. Yesterday I took Violet to her 9 month doctor appointment by myself! Seriously, the small things I took for granted before I will never do again.

---COPING---

We are in good spirits. Most days are good days, but even on good days I have moments when it'll hit me. When I first found out I had cancer, I was extremely anxious...couldn't sleep, couldn't eat, couldn't stop crying, I would repeat the word "cancer" over and over again in my head. It consumed me, understandably. It's been months now and I am in a better place. Living with cancer is weird, like it's normal now? Dealing with this huge diagnosis is like a side job. I think about it all the time, I try not to worry when I don't have to. I try to enjoy the moments that are happening in front of me instead of thinking towards the future. There's a lot going on at home and it's so nice to be distracted by daily life stuff, but sometimes that in and of itself is hard for me. I think it's in those "normal" moments when it hits me the hardest because I can't pretend like I don't have cancer- it's there lingering over me like a little black ugly storm cloud. Last week I was way into Lego building. My boys have literally 30 small Lego sets that when taken apart, we put in one big bucket at the Lego table. One day I decided we should build all the Lego sets! We got the pile of instructions out and we picked one by one to build, searching for the right piece amongst a huge Lego pile. It's kind of like putting a big puzzle together. Anyways, after two hours of doing this I was sitting on the floor with my 5 year old and like a big wave that knocked the breath out of me I was reminded "I have cancer". CANCER. I have cancer. It was like someone punched me in the stomach and told me I have cancer for the first time. I kept finding Lego pieces, trying to hide the tears from my son. Cancer is so scary and I hate not being in control of something in my life. It feels like I have two lives, I hate it. I am grateful for Matt, a husband who can sit with me each night and talk about all of our thoughts and fears. This is big stuff, I am grateful I don't have to go through it alone, although I constantly feel guilty for putting this on so many loved ones.

We have a routine. Everyday is a good day when I get to spend it with my family.  Matt is able to work from home "as needed" which has made all the difference. I have lots of friends ready to help me, but it is so nice to have Matt home most days. It's fun. He enjoys it, actually. We can have a picnic lunch in the backyard as a family, I mean, we never did that with Matt before. I try to do as much as I can so he can actually work, but he usually spends all night catching up on work because he couldn't get much work in during the day-between three small kids and a sick wife there are lots of needy people in our family, haha. Matt has completely stepped up and taken over, especially in the mornings when I can sleep in. The best caregiver in the world :)

---INFUSIONS---

As exhausting as it is going to the Huntsman once a week, I actually enjoy my time there. I get to spend hours in a comfortable chair in a quiet environment where I can sleep, write, read, watch a show, eat, sleep, or visit with whomever is with me.

My first THP infusion was with Matt. I was nervous not knowing what to expect with this chemo. It was the "loading dose" infusion so I got a lot more of each drug, we were in the infusion room for over 6 hours. I had a small allergic reaction when I received the Perjeta, so we had to pause it for a while and then give it to me slowly. I haven't had a problem with it since.

Isn't he cute?

 Since I was so groggy after that THP chemo, I wasn't sure how I would feel after my first infusion with just the Taxol. We dropped the kids off at my sister-in-law's house (thanks Becky!) and Matt sat with me for this chemo. I was pleasantly surprised it lasted less than 3 hours! I got my own room again and Matt and I took a long nap :)

I have to add some Easter photos here, trying to keep up traditions and had some Easter fun at my sister's house.

My brother took me to my third infusion and sat with me the whole time. It was so nice to visit and catch up with him. After chemo, he needed to go to work so my sister met me at Huntsman where we enjoyed lunch in the cafeteria before getting another echocardiagram. So glad the echo showed my heart hasn't been damaged from the AC treatments and hopefully will continue to be strong. My sister brought baby Calvin who joined us for the afternoon :)

And then I got really sick. My boys got a 12 hour stomach virus 2 weeks before I got it, I thought I was out of the woods, but nope. My immune system is weakened from my chemo, but also my stomach isn't healthy because of what the chemo has done to it. In other words, this "12 hour stomach virus" was more like a 2 week stomach virus for me. When the virus hit me, I couldn't stop throwing up. I was so dehydrated that I passed out. It was really scary and all dramatic because it was in the middle of the night (thanks to my bro for sleeping on my couch while we were gone). I couldn't even make it all the way to the hospital without stopping in front of the beautiful Capitol building and its cherry blossom trees and throwing up there. Ha! After three liters of fluids and some ativan, I felt so much better. Trying to walk felt like I was hit by a truck and I really couldn't eat anything for 2 weeks, but I eventually recovered.  I told Matt next time the kids get sick, I'm getting a hotel :)

And just when you think things couldn't get worse, Matt broke his hand! It was the night before a big TPH infusion and luckily my parents were there. They were going to take me to that morning's appointment, but stayed home with the kids because Matt couldn't take care of them with a broken hand. So we got in the car early in the morning to meet with my doctor and our car wouldn't start. Our battery had died! We didn't have time to jump it so we drove my dad's truck (they needed our family car to run errands with the kids). It definitely hit a point where we just laughed. We're like, everyone stay away from us...we have the worst luck! Poor Matt. He needed a short cast for 3 weeks. So all in all it wasn't so bad, except those first few days of pain and swelling. I actually drove us and he slept all through my chemo. Not sure why he came ;)

Despite being sick that week, I was glad my blood levels were just borderline well enough to do this chemo. My potassium was low so I had to take these two huge potassium pills. I couldn't believe how big they were. 

My Uncle Jimmy and Aunt Connie so generously offered us their timeshare at Snowbird. They wanted to help us out in some way and thought it would be nice for Matt and me and our family to have a little getaway. They were so right! Especially after the week we had (haha) it felt so nice to get some fresh mountain air! Snowbird is absolutely beautiful. It's still ski season and the weather was a bit colder than the spring weather we were having at our house, but it was very refresing and the resort was so fun. My parents watched the kids so Matt and I could have some "kid-free" time aka "sleeping in" time and then my parents brought the kids up to enjoy the stay together. I loved our little getaway :)

My fifth chemo I drove myself. We were going back and forth on what would be the best thing to do and since I needed to leave before 7am and before or just as the kids are waking up, I didn't feel like it was the best thing for everyone if Matt drove me with kids in tow, dropped me off, and then drove all the way back home AND THEN came back to pick me up (it's about 30 minutes away with the morning traffic). I actually looked forward to spending 3 hours there to myself, reading and writing in my journal. The taxol alone doesn't make me feel groggy or tired so I felt I was well enough to drive myself, and I did! I am such a practical person, I figured Matt needed to work that morning as well. Thank you to the friends who let my boys come play at their house so Matt can work :)

My Aunt Annemarie and her family drove straight through the night from Portland and made it to my house in time to take me to my sixth chemo appointment. I felt so bad knowing how tired they were from traveling and driving, but they wouldn't take no for an answer and were happy to take me to my appointment :)

It was so nice to visit with them and their family (my cute cousins!) for 2 days while they were in town for a wedding. I am grateful for family that makes such great sacrifices to help us out and support us.

My seventh chemo (last week) we dropped the boys off with my sister-in-law (thanks Jourdan!) and brought Violet with us to my morning appointment. Before my full THP chemo every three weeks, I meet with my doctor. He takes a good look at my blood work, does a physical exam, goes over my side effects, and answers any and all of my questions. Matt was there for that part and then he took Violet home so she could nap and he could work and I headed to the infusion room for some lovely chemo. Matt's parents had just come into town where they planned on spending two weeks with the family for Matt's sister's wedding (yay!). They were ten months into their mission at the Cochabamba temple in Bolivia and we were so happy they got to come to Utah for a bit, excited to spend time together and to meet Violet. Well, after about ten minutes into their visit at our house and playing some soccer with little Nicholas, my sweet mother-in-law tripped and fell and broke her arm. It all happened so fast and it was such a bad break (I told you, stay away from our house!). We all felt so bad she had to go through that, they even have to extend their visit here for 3 more weeks. Anyways, this seventh chemo was a few days after that all happened. They wanted to help us out by watching the kids so Matt could be with me, but we figured it best if they visited with me during my infusion and then brought me home. It was such a nice visit, I wish I would have gotten a picture! Thanks mom and dad :)

I didn't intend to be so detailed on this update, I guess looking back through my infusions each week reminds me of how fast this treatment is going, and for that I am grateful! Thank you to all those who had my kids play at their house, for the dinners that were brought over, for the letters in the mail, for kind words of love and support, for the anonymous person that sent us a package of food from amazon pantry, for those offering date nights and babysitting opportunities. Thank you so much!

My social worker advised when I tell others about my cancer and my treatment to not sugarcoat it (to friends and family anyway). That is something that is hard for me to do because when I talk to others about my treatment I'm usually feeling like myself and "everything's ok". It's still sometimes hard to believe or imagine that it isn't. When people ask how the treatment is going, part of me wants to dramatically yell "everything is NOT ok! This is the worst thing that could happen! I hate this and no one understands (waaaa!!)". Honestly though, the majority of me feels like I don't want to bring people into our world. I don't want others to feel sorry for me (I hate that look on people's faces) or for them to learn the reality of my disease, our reality. But what's the reality? Well, we don't know the future. I like to imagine another 60 years full of life, but no one can tell you what is going to happen tomorrow or in a year, no matter how much we plan ahead. I think about a year ago and how I was 6 months pregnant with Violet and all was well. Being halfway through chemo feels productive, but I'm not halfway through my treatment. I still have a long road ahead of me. The reality is that even though I have a chance to be cancer free for years, my cancer is not going to stay away forever. The reality is there is the same chance cancer can come back after one month as it can come back in 5 years. We'll know more of my prognosis after surgery. So that's where we're at. This is what we're praying/hoping/wishing/working for - time. I'm doing my best, giving it all I've got. I'm taking care of myself in all the ways I know how so I have no regrets. I wish I could sneak a peek into the future and see how this is going to play out. That's what's hardest for me, the unknown.

Maybe they'll find a cure soon. I mean, it's about time, right?

 I know I can do this, my doctor is optimistic so I know he has my back. I'd just like to see the light at the end of the tunnel. I'm such a realistic person, I wish I was naive and just believed what everyone told me, but I have to go on thinking things over and over again...reading and reading and understanding all the different scenarios...there are so many scenarios. It just goes back to that saying "hope for the best, plan for the worst". As realistic as I try to be, I can't help but know in my heart that I have my best days ahead of me. Life is good, isn't it?

I have a CT scan next week. Please pray. Pray to see a big shrinkage in my tumors. As much as I'm looking forward to comparing the before and after scans, I'm extremely nervous. Love you all!

Adriamycin + Cytoxan

I did it! I completed my first set of chemo on March 3rd, 4 rounds of Adriamycin and Cytoxan. These 2 drugs were given to me to shrink my cancer tumors systemically which they did. My first infusion was on January 22nd and I've had an infusion every other week. I learned I needed those two weeks for my body to recover from each infusion. 

I was so excited and giddy for my first experience with chemotherapy. Matt was by my side. I had no idea what to expect, I was just excited to be in there and doing something that I knew would get rid of my cancer. I wasn't nervous or scared, I was all smiles!

The Huntsman Cancer Institution has a large Infusion wing. There are 8 pods with 4 available chairs in each pod. All these pods face the same wall that's actually all window overlooking the city.

My nurse went into great detail explaining things to me, like what she was doing and why. After telling her about my diagnosis she said that I'd get through this because I am young and smart :)

I know that chemotherapy affects people differently. First of all, there are hundreds of different chemo drugs for different kinds of cancer. And even if I was on the same chemo as someone else, the side-effects wouldn't be exactly the same. Some chemos don't work for some people (tumors can still grow during chemo) and other people may get too sick to continue those chemo drugs. My doctor listed all the side effects I would have from adriamycin and cytoxan, but told me they'd vary in intensity. Talk about anticipation! Since we didn't know how I'd react to this chemo, my doctor had me on 3 anti-nausea drugs before getting my chemo in case my body reacted badly. My nurse said the worst for nausea/vomiting are usually young premenopausal women in their "child-bearing" years (like me!) and the easiest on old men.

Since I'm so young and healthy (ha!) they gave me the biggest dose of the adriamycin any healthy person can handle. It was a lot. I HATE this stuff. Just thinking/looking at it makes my stomach sick.

You can see that "the red devil" is in a push needle. Did you know if you receive this chemo too fast you could...die? It is so strong and hard on your heart/veins that the nurse sits next to me and slowly pushes it through my port. Every so often (like 30 seconds) she'd draw back to see if she can get a good blood return. This whole thing took only 20 minutes, but I could feel it enter my body and it was not a good feeling. One of the many side effects of "the red devil" are mouth sores so while receiving this chemo I chewed ice. The cold prevents the drug from traveling to the mouth therefore relieving you from the sores. Cytoxan was less dramatic and given to me through a drip.

That first chemo wiped me out. My body wasn't used to medicine this toxic.  I slept the last hour, the entire drive home, crashed on my bed, and slept for EIGHTEEN straight hours. Never in my life have I slept that long. 

So what does chemotherapy feel like? How did I react? What were my side effects?

1. Hair loss- days after my second infusion my hair started falling out by the handful (I plan to write a separate blog post about going bald). Losing your hair from chemo isn't like how it's portrayed in the movies. It's not a simple shave and then...boom....shiny bald! My scalp felt like someone was pulling my hair! It hurt really bad. Even once the hair was all gone...all shaved off, my scalp felt like someone was tugging at it. I noticed I'd just put my hands flat on my had and push down. Wearing a beanie or scarf really felt good on my head, it relieved some pressure that I felt. So not only the hair on my head, but the rest of my body was hairless too. The only hair that stayed were my arm hairs and my eyebrows and eyelashes (My nurse said it was 50/50 and I guess I got lucky). It was very nice not to have to shave my legs for months. And once the hair was gone it did not grow back. Absolutely no hair growth.

2. Mouth sores- I got lucky and only experienced this mildly. My nurse told me that if I am prone to cold sores than I'd most likely get these mouth sores. I've never had a cold sore in my life so I was optimistic! These sores can be all inside the mouth and even down into the throat. Yikes! I brushed my teeth and bought a special mouth wash I used after I ate. I kept my mouth clean and it worked! I did have a few mouth sores during these treatments, but it hardly affected me. It felt like a scratch, but it would usually be gone the next day.

3. Nausea/vomiting- I didn't throw up at all. I felt nauseated like I did in my first trimester of pregnancy where I had to only eat certain foods and then drink lots of water. My nurse told me that their goal was to have me up and going everyday and if I was laying by the toilet then that was wrong. She told me chemo shouldn't be how it's portrayed in the movies. I shouldn't be throwing up at all. I was prescribed some anti-nausea medicines the days following each chemo and I think those helped me. Once those days were up then I felt more of the side-effects like nausea. The nausea really wasn't so bad! Maybe because I was used to it from pregnancy? I was just happy I didn't have to throw up and that I could mostly eat normally. One of those prescribed medicines was a steroid which I felt had worse side effects than my chemo! Nausea was cumulative so by my last AC chemo it was definitely at its worse. But I'm happy I got through all 4 of these AC infusions without a lot of nausea/vomiting which I think is a side-effect most people think of when they hear chemotherapy.

4. Fatigue- I think this was the side effect I hated the most. These drugs did a number on my energy levels and my brain! I had two weeks between treatments and that first week I was good for nothing. I think it was on days 3-6 where I sometimes couldn't get out of bed. And if I did get out of bed I could only really take a shower and then I was so exhausted. If I did get downstairs I was there to stay because walking upstairs was an ordeal. Do you know how that feels? It's one of the worst feelings in the world. I told Matt I felt all "sludge-y". Those days 3-6 after each chemo also affected my brain! I couldn't think, read, write, or even have conversations (ones that I remember anyway). I was foggy and loopy. I had a hard time looking people in the eye and listening and thinking. I remember my mom, who was there helping my family, showing me a grocery list and asking me if that was good or if there was anything I wanted to add and I could not read it. I couldn't think, it was so weird and awful. Anyways, once that first week was up, I got more of myself and my energy back each day. I almost felt completely myself again the day before the next infusion. Talk about mind games! I think that's why this side-effect was the hardest for me. I hardly knew what to expect the next day and we'd have to change or move around our plans. It's so strange how one day I couldn't get out of bed and then a few days later I could go for a mile walk around the neighborhood with my kids, do laundry, make dinner, etc.

5. Neuropathy- This was a side-effect I was not expecting. Here's a funny story: On one of those "in bed" days after chemo, I wanted a specific healthy meal that I'd often make for myself. I knew I couldn't make it downstairs to cook it so I asked Matt to bring up two zucchinis and a pepper and a cutting board and knife-I was going to do some prepping right there in my bed! As I was peeling the zucchini, I noticed my hands feeling uncoordinated. I had to think really hard what I was doing or I was afraid I would hurt myself, especially when I started chopping. I had to go so slow and be super careful. This was the first time I noticed the numbing in my fingers. The second time I was buttoning up my son Andrew's shirt for church. It was extra hard. It was frustrating, I did not expect this symptom. Then I noticed when I was washing Violet's bottle and the hot water felt weird on my hands. These symptoms occurred after my third infusion so I told my doctor before my fourth one. He broke a stick in half so it was pointy and poked my fingers (didn't hurt) and then poked my palm in the same manner (it hurt really bad). Yikes, I had no idea the numbing was that bad. My doctor did the same to my feet, my toes were also numb. So during my 4th infusion I iced my wrists and ankles during "the red devil" so it would prevent more numbing. It didn't work very well because those next few weeks I felt the symptoms worsen. The very tips of my fingers felt "shrivel-y" like they do when you're in water too long and some of the skin on my finger tips started to peel. I told Matt the only way to describe it is when you get a burn on your skin and then the skin starts to peel off. It's that same sensation, without the pain and more numbing. "The red devil" also made some of my fingernails turn black as they started to grow out.

6. Low White Blood Cell Count- Chemo does a number on your good cells as well as knocking out those bad cancer cells. Having a very low white blood cell count means you have no immune system. I was really worried about this side effect because I have little kids that are involved with friends and preschool and church and other things where there are lots of germs germs germs. I asked if I should keep them all home and my doctor and nurse said no! Go on with life as usual-go to a movie, go out to dinner, go grocery shopping, keep your kids in preschool, etc. Obviously be mindful of keeping away from sick people and always wash your hands, especially before eating (things we were doing anyways). I felt good about this. I wanted to keep our life as "normal" or routine as it was before. Lucky for me my WBCs were high with these treatments. Want to know how? Neulasta.

Towards the end of each infusion my nurse attached this device to my arm. It sets itself to give me a shot in 28 hours. This is for convenience so I wouldn't have to go back to the cancer institution the day after chemo for a shot. This is the future! It was pretty cool how this worked. As you can see from the photo it shows the device as full. There was a green light that would blink about every ten seconds. Then after 28 hours it would beep and then blink a green light really fast. I could feel the shot being inserted into my arm and it took...30 minutes? for it to reach empty. Then the light would turn red and I could just peel it off and throw it away. Neulasta stimulates bone marrow to create more white blood cells. My WBC count went pretty high during chemo because of this shot. However, this gave me lots of aches and pains (because of the bone marrow). I was able to figure out how to combat those side effects, I was just glad this worked well for me. 

Wow, that was a lot of detailed information. I would sum it up and say that physically, it was not as hard as I thought it was going to be. Nurses complimented me and said I look great "considering" I was on these specific chemo drugs, so that made me feel good :)

These family photos we took before church were days after my first infusion and I remember only being able to hold Violet here for about 15 seconds. I'm learning to find any sunshine moment and document it. Staying positive and getting myself distracted with my cute kids was a great help during chemo.

Before each chemo, I visit with my nurse practitioner and doctor where we talk about side-effects and look over my blood work from that morning. My doctor also gives me a physical exam. Before my second chemo I told them I slept so long from the pre-meds (one of them "may cause drowsiness") so we cut that dose in half for my second infusion. My parents sat with me during this chemo, it was good to visit and have them see where I've been going and what I've been doing. My parents were the ones watching my kids and taking care of my home during the many days I've spent at the cancer institution (thanks mom and dad!). Before this chemo I cut my hair short, knowing it would fall out in a few days.

Matt came with me to my third chemo and we got lucky and got our very own room! I guess this happens by chance, it was nice to have more privacy and we even turned down the lights and took a nap.

My cousin Kelly came from California to spend a week with me and my family! She got to take me to my 4th and final AC treatment. We love you Kelly! This last chemo was the hardest on me, I know why my doctor stopped me at 4. It really wiped me out and made me look how I felt- sick.

Here's me with no makeup before and after 4 rounds of chemo. Bald and big dark circles under my eyes. Tired, but still happy :)

I haven't gotten scans yet, but just from my doctor's physical exam, we can tell the tumors have shrunk a lot. We don't know what's going on in my liver (until I get scanned again), but my blood work shows that everything in my body is working great. I had an echocardiogram before chemo and after chemo (adriamycin really damages the heart) and everything looked great still. The only positive to getting cancer so young is that my body is strong enough to accept all the drugs to fight off the cancer (although I'll have many long term side effects from chemo).

Being a mom can never be put on hold, even during cancer treatments. My kids are thriving and growing, time does not stand still! I took any good day or even a good moment when I felt well enough and spent it with my kids and Matt. I tried to take advantage of my sick days by reading or writing in my journal or making family photo albums (that has been on my to-do list for years, it's so hard to keep up!) but if I felt well I was taking care of my kids or hanging out with Matt. I'm a mom that enjoys her kids and never feel like I need a break from them. I like them to participate in my life as much as I enjoy watching them in their own little lives. So yes, it is hard being sick and not being the mom I want to be - or used to be. I know I'll get there again, and I fake it and try to take over as best as I can :)

The weekend after my last AC treatment, we went to the Aerospace Museum as a family.  We enjoy doing things as a family and spending a nice afternoon at a museum is something we would frequently do. We haven't done this since before I was diagnosed so you can imagine how nice and normal it felt to be a family. I love my little family and our little day outings together.

There is no way I could have gotten through these tough treatments without the support from my family and friends. I am grateful I have such a strong support system: Matt, my parents who drove or flew up for each treatment, my sister Lindsay, my sister-in-law Becky, my friends and neighbors who brought dinner over or watched my boys so Matt could work from home in peace (ha!). I'm grateful for every encouraging word and every prayer and good thought that has come our way. 

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

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!

RARE DOESN'T MEAN NEVER

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 on...so 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!

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!