Day 166 | So, I had a baby....

I posted our big news on Facebook. We had a baby. And, we got married too. 

Sorry if you didn't know - we didn't feel the need to share our babynews until we had a healthy baby boy. We had about 100 doctors doing the worrying for us. 

Alas - this isn't a blog about my marriage or baby, but I will now tell you about being pregnant with cancer. The medical parts are iffy, the emotion is intensified, but joy you feel about having a child is probably the same. 

Our baby - George Samuel - was born on 4.29.17 at 4:16AM. 4 lbs 15 oz. 19 inches. 6 days in the NICU.

Very strangely, he was born in Albany, NY. (We are from Columbus, Ohio). We were driving stuff between our houses, trying to get things accomplished "before the baby came" as part of my crazy nesting.  ...best laid plans, huh?  My water broke 15 minutes outside Albany. I was 36w1d pregnant. He was four weeks early. So much for this "pregnancy bag" everyone talked about - we didn't even have the car seat with us. 

And - just like that - we became parents. Like I said, there is plenty of normal mom stuff - My iphone camera instantly filled with hundreds of photos. There are still diapers. And 1AM feedings. And 4AM feedings. And 6AM feedings. Okay, there are a lot of feedings. But only bottle feedings, because breast wasn't an option. There is still vomit to clean. Diapers to change. And, so many tiny clothes to wash. The tiredness is probably the same - if not a teeny bit more because... chemo. 

When I asked if he felt a lot different as a dad, my husband said, no, he became a parent the moment we found out I was pregnant. I guess I did too...I mean, I was growing a tiny human, who I got to see on fancy ultrasounds all the time (cancer + pregnancy = all.the.scans). I had to constantly think for two - research for two. Things like "that treatment may be best for me, but not good for George." I didn't take many pain pills or other supplemental medications because of this worry. That placenta stuff is pretty money though. I'll share the medicine part later, but the chemo molecules are too big to pass through the placenta, so we didn't have to worry too much about that.

As you can imagine, there is a lot of fear in bringing someone into the world when you're not sure how long you will be here. Throughout the pregnancy, I was afraid that this fear would somehow make me less of a mother. But...Here to report, that I feel all the love stuff like it's reported in the books. 

There is normal mom worry though - the checks to see if he's still breathing. Wondering - is he eating too much? Too little? Is his weight gain okay? (This is probably more true for those of us with babies who spent time in the NICU.) The overall worry and tears may be intensified for moms with cancer. The future is more murky for us...Before cancer, I was worried about morning sickness and the craziness of trying to have as many babies in as possible over the next five years. After cancer, I'm hoping I can watch our one baby grow up and my stretch hope is that we can have one brother/sister for Georgie - through adoption or naturally. Plans change. We adapt. I know our family isn't alone in changing our children plans - people do it every day.

I am trying to not fixate too much on the unknown, working on the "live in the present" thing. You all can ask my husband how that's going for me when I'm fretting that the floor is too dirty at midnight. Either way, I know that my baby's fifth birthday will be all sorts of milestones, many unrelated to him turning five.* 

--

I guess that was all the "normal" / emotional side of pregnant with breast cancer. The medical side seemed way more complicated at the beginning. I'll describe that more in my next blog post because my tiny human needs to eat and the house needs cleaned. (this counts as in the present because my house presently needs cleaned :). 

*TNBC milestones are two years from treatment ending without recurrence, after which, recurrence drops dramatically. And five years post-treatment, after which recurrence is even less likely than other types of breast cancer at the same milestone.

Day 45 | Tummy Troubles and Back to Work

Well, the good couldn't last forever. Dealing with some tummy troubles that started yesterday, and followed me into today. 

Doctors are just saying to keep hydrated while his passes. Chicken soup and coconut water till then. 

Hopefully, this is the worst part, and it eases up from here.
4 I was feeling well enough to go back to work! (though working from home for the day...hope to be back in the office tomorrow) 

Day 41 | One Day After Chemo

I expected today to be bad. I expected to feel awful. To vomit. A lot. 

...but it hasn't been that bad.* I woke up with a terrible headache and body pain around 7am. I took a Tylenol, received my stomach shot (Lovonox), drank a big glass of water, and went back to bed till around 11am....Something I haven't done in forever.

Then, I felt pretty okay. My loving, wonderful mother made me some soup and a sandwich (Did I mention that I have the best mom ever? She's coming up to help take care of me during treatments.) Mom and I watched a movie, took a walk, went for a hair cut, made dinner, and went to bed around 7:30PM.

Hair Cuts

Getting my hair cut was pretty cathartic. It is supposed to fall out in 10-14 days. It was long. Too long really. So, I cut 10 inches off to donate it to Panteen Beautiful Lengths, who partners with the ACS. With hair this short, it should reduce some of the stress in having it fall out. 

But...As soon as I start to lose it, I'm going to Britney that s***. It's getting shaved off...I can then live up to my bald blog name.

So, for now, this is me. It will likely also be me in November. There will be less hair and more hats in between now and then. My boyfriend said it's good that I don't have a really weird shaped head. Glad he's so sappy. 

Chemo Learnz

*They told me that you don't really start getting sick till 3-4 days after your first treatment. With your nadir period (lowest blood counts) at days 7 - 10. You start to recover around day 10-14. Then, you feel okay for a few days...before they start chemo again. 

The chemo is supposed to build. It is poison. Oncologists are trying to kill everything inside you without killing you. As I said in an earlier post, chemo attacks rapidly dividing cells. But, chemo is dumb...and while killing cancer cells (that will hopefully not return), it also kills healthy rapidly dividing cells (that will return), typically those in blood/ mouth / stomach / bowel / hair follicles. 

You bounce back sooner earlier in treatment. Later in treatment, it's harder to recover because your counts aren't as high and your body is more full of poison. 

The break between AC and Taxol should really allow me to recover. 

Day 40 | Exhausting Day: First AC Chemo Treatment

Well, today was supposed to be hard. It was supposed to be the first day of chemo. It was supposed to start at 8 and end at 12.

But. Seems cancer is a life lesson in anti-planning.

The Biposy

Instead, today started with a 5:45am wake up call. We got to the James at 6:30am to be prepped for a 7:45am procedure - a core biopsy of the one potentially malignant big lymph node under my collar bone. They said they were going to put me under because of the location of the node and the sensitivity of the area. They told me I was NPO 12 hours before the "surgery" - nothing by mouth. 

(More details on the "why" in the last blog - A Lesson in Supraclavicular Lymph Nodes)

I strongly preferenced to NOT be sedated. ....Mo' anesthesia, mo' problems.  They said, "we'll see" until the doctor got there. She said, if you think you can handle being awake, that's fine by me! 

The radiologist was amazing. She specialized in head and neck cancer scans. (Sounds very specialized to me). She talked to me through the whole procedure. 

She told me that she wanted to take three core samples. From three holes this time. She said, if this were definitely NOT cancer, she wouldn't take a sample. If this were definitely cancer, she would only take one sample. This was in the grey area - maybe cancer. Maybe not. 

It wasn't pleasant, but it was pretty fast. She gave me a big band aid and sent me to "recovery."

Moving to Med Onc.

So, we left recovery, and headed to chemo. <<Fun Day!>> 

They took my blood....or tried to take my blood and couldn't get a good vein. So, several sticks later, they had a temporary shunt inserted in my hand.* It hurt. More than just owww, it hurt a lot. But! They were getting a good return, so I said to use it. 

I met with the doctor. She said some scary stuff about the biopsy, but some good stuff too - the good stuff was mostly that it could be just nothing. The scary stuff involved a lot more treatment and changing the plan. If you pray, please pray for good news Friday. 

Starting Chemo

They moved me to a semi-private room to scan in all the drugs they'd put in me. Since it was my first time, they moved me to a private room. (Seemed only polite). 

Emend and Aloxi

They started the drip - two anti-nausea meds into the hurt-y vein. Emend and Aloxi: Emend was benign - no pain; Aloxi burned the vein as it travelled up my arm. It took about 2 hours to get them both injected. 

Then, they decided that the burn-y vein wasn't good for the Adriamycin, because it's a vesicant.** So, they started the process of looking for a vein again. And after a few false sticks, were able to find a really good one....oddly, on the side of my thumb. 

Adrimycin

So, after about three or four hours of being at the doctor, they started the actual chemo! The Adriamycin is hand inserted in big tubes like this: 

There were three tubes, each took about 15 minutes to be injected. They test periodically to ensure that the line has good return. It can burn when injected, but it didn't burn me. The Adriamycin can cause mouth sores because it attacks rapidly dividing cells...cancer...but also cells found in the mouth, throat, and GI track (also why there is hair loss). To combat mouth sores, they try to "freeze" the mouth cells by letting you eat a million popsicles while they inject you. I think I ate 10.

Side note: Adrimycin also makes you pee red for a few days after chemo. They tell you this about 45 times. They must receive a lot of worried calls about why it's red. 

I'll write later about the full side effects from Adriamycin. Today is more mechanical. 

Cyotan

The next drug dripped was Cyotan. It can cause headaches as it is dripped, which occured on me. It felt like dry nose syndrome that went up into my head. Mine occurred 45 minutes into an hour long drip. They said next time they'd drip slower to reduce the headache. 

They flushed me with saline and I was allowed to leave. The headache only lasted around 15 minutes after they stopped the drip.

Oh, and I went to the bathroom. My pee was red.*** I wanted to tell the nurses and ask if it was normal, but after such a long day, I didn't know if they'd enjoy my dry sense of humor.

Chemo Learnz Section

*Note on vein use in chemo: I have a really good vein up by my elbow. I mean, not trying to brag too much, but it's a really good freaking vein. It's my go-to blood-giving vein. HOWEVER, in chemo, they start with lower veins and move their way up. This is for two reasons:

1. Chemo is poison and it blows up your veins. Many veins feed into my one awesome vein....so, by blowing it up, they'd remove the possibility of using any of the lower veins.
2. Even if they could use the lower veins, there's a chance the chemo could "leak" out of the upper vein.

**What is a vesicant? It is a chemical that causes extensive tissue damage and blistering if it escapes from the vein. The nurse or doctor who gives a vesicant drug like Doxorubicin must be carefully trained. If it leaks beyond the vein, it could be caustic to the skin. 

***Note on bodily fluids after chemo: Did you know that after chemo you're toxic for 48 hours? You are supposed to use a separate bathroom from anyone in the house. You have to close the lid and flush twice. You separate your clothes, they should be washed in hot water by themselves. There is no deep kissing. No one should wipe your tears. Or sweat. If you sweat in bed, you should wash the sheets...separately, in hot water. 

Day 39 | A Cancer Lesson: The Supraclavicular Lymph Nodes

Well...Taking the good with the bad 

In the (clear!) MRI of my spine, they saw a lymph node that needed extra scanning. Yesterday, I went to have more ultrasounds of my nodes. 

One of the nodes is 2cm. Anything over 1cm is considered suspicious for cancer, especially when it's positive in other nodes. 

It is possible this is a "nothing" swelling. They reviewed spine MRIs from 2015, and it seems there may(?) have been swelling in the same node back then...but they weren't MRI-ing my nodes. They were MRI-ing my spine. So, there isn't clear evidence one way or another.

Damn. What happens next?

So, before I start chemo, I will need another biopsy of the node in the supraclavicular region. Due to the location and size of the node, they will need to put me under again. Cue all the doctors. 

Wait, what the heck is the supraclavicular region?

It's the area above your clavicle.

So what if they found cancer there? No offense, but we already knew your lymph nodes were cancerous. 

While they found (and removed!) cancer in the axillary lymph nodes, finding cancer in other lymph nodes changes staging and possibly the prognosis and treatment. The overall impact on the: 

• Short-Term: It will likely not change anything in the short term (except pushing my first chemo treatment back a few days).
• Long-Term: They want to know if it's cancerous before starting treatment because it could/would change the long-term plan. A new plan may involve chemo, radiation, then chemo again. It may involve more surgery. We don't fully know yet how / if the bad node will change things. 
• Super Long-Term: The overall survival rate for stage three cancer was 77%, but that is from people that started treatment in the early 2000s. The survival rate for triple negative is a little lower than that of other types of breast cancer. ...but, there are NEW MEDS, NEW TREATMENTS every day.

Why do they need to know about your supraclavicular nodes now?

They want to identify the cancer now, before starting chemo, because chemo could shrink the node and/or rid it of cancer....which we all know is a good thing. However, they wouldn't know about where to radiate and/or if the area need targeted extra radiation. It's important to identify that now so they can get a clear idea of my overall treatment plan NOW, before I am cured forever :). Here is a good article on radiation for breast cancer.

What's next?

• If this node is cancerous, they will restage me at a 3C (more on node involvement and staging). Being a 3C sounds really bad (or worse than 2A or 3A). It's the last step before being a stage 4. ...But the cancer has not in the organs, bones, or lungs. This is still good news. 
• If the node is benign, they will start chemo sometime this week, and they will monitor the little/big node over time.

Let's not despair too much. It's possible that this is nothing. It's possible my anatomy is just wired to have one big lymph node in my supraclavicular region. Until we biopsy, we don't know. So, let's keep praying. I'll let you know as I know more.

Day 34 | The Strange Thing No One Tells You About Breast Cancer....

So, the weird thing I didn't know about breast cancer is that I FEEL FINE! Or, rather, prior to surgery, I felt fine.

With most things, you feel sick, so you go to the doctor, and they make you better. You go on living

With this cancer, I felt great, found a tenny lump (less than an inch small).... but, I felt fine. Actually, I felt great. This is me the weekend I found the lump. I went to Cincinnati and Churchill Downs with a friend.

After finding the lump, I was poked with needles, they took samples, squished my boobs, put a needle in me, cut out pieces of me (surgery), and will soon pump me full of poison (chemo), burn my skin (radiation), and then .... let me heal and hope (!) for no recurrence.

....I went from feeling fine to alarming everyone and having to see 100 doctors.

Post-finding the cancer, I ....  

• Have to get shots in my tummy daily (blood thinner, prepping for the chemo)
• Will cut off all my hair (and donate it) to prepare to be baldie for 8 months
• Am stocking my home with chemo-friendly foods
• Have to call the insurance company 400x to see what is covered...and what isn't 
• Visit. Every. Doctor. Ever. 

Okay, just some musing for the day as I prepare to see my surgeon to check the progress of my wounds. Wish me luck!

Day 19 | Post-Surgery Recap: Healing and Planning

I underwent surgery on Wednesday, December 14th. 

• The lumpectomy showed a 2.4cm tumor, excised with clean margins. 

• The full lymph node dissection, removed all 12 lymph nodes from under my left arm. Six showed cancer. 

Post-surgery, they have staged me at 3A. (If you're interested, learn more about staging.) They are going to do full body scans to see if it's anywhere else (lungs, liver, bones). Stage 3 sounds pretty scary, but stage 3A is early in the 3s, so it’s unlikely to have spread.

Here is my likely chemo schedule:

Chemo round 1
  12 weeks, four treatments

• 1.11
• 2.01
• 2.22
• 3.15

     <<break>>

Chemo round 2
  12 weeks, 12 treatments

• 5.17 
• 5.24
• 5.31
• 6.7
• 6.14
• 6.21
• 6.28
• 7.5
• 7.12
• 7.19
• 7.26
• 8.2
• 8.9
• 8.14 (maybe)

I’ll finish chemo here if the cancer hasn’t spread!!!! More “maintenance” chemo will be required if it has. 

Radiation will then start - it's unclear now for how long, but it seems like it will be targeted at the left breast and underarm because of the increased lymph node activity. It should last about 30-45 days, and may be administered daily. It is likely to end sometime in October.

Hopefully then, there will be no more cancer. I will be checked every 2-3 months for two years and then every 6 months till year 5. Then, annually forever.

If there is an infection or something goes wrong, they will push me back. But hopefully will go along swimmingly.

Day 5 of Breast Cancer: The Opening Credits

Well, I am starting this blog because I have breast cancer. I will <<try>> to document my progress and prognosis on here to avoid sending 37 texts/emails, and maybe to educate a little along the way.

I'm going to do a day count. I've seen it on other blogs. I find it encouraging. "She's lived with this for X Days." I hope I can post Day 13209829013 some day. Okay, that wasn't an exact science. It was my pushing the keyboard numbers a lot...but, you get the point.

I'll start at the end....

I have breast cancer. I was diagnosed on December 2, 2016. I'll come to find out that it's triple negative. A rarer type of breast cancer, found in 10-15% of patients. I'll be staged at 2A, think that's pretty bad...be restaged at 3A, think that's worse...hear the words stage 4, and settle on 3C prior to chemo. I don't know any of this yet. I updated this on Day 50 with a little more information about me and a LOT more information about cancer - googling / reading / listening :) 

The big takeaway from this story is TO DO SELF EXAMS. I am too young for mammograms. I don't have the genetic markers, but I have cancer. I was lucky I found the lump and acted on it right away. The oncologist said that if you have a family history, it's appearing YOUNGER in later generations. Okay, that's the PSA and thing I want you to take away from all this. 

And go to the beginning....

The rest of the story: I found a lump in my left breast in mid-November. I had an appointment scheduled with my obgyn anyway, so I waited two weeks to see her. She told me they agreed - seemed odd - and to go see a breast imaging specialist at a private practice ... within 24h. I did. The specialist did scans. Also seemed abnormal. They said I needed to have a biopsy of the breast and a lymph node for good measure. And, they'd like to do them within 24h. (Something I have found in healthcare, if they are rushing you through the system, it's never good.) 

I had the biopsy on December 2, 2016. It hurt. A very little bit. (Honestly, barely hurt). They took several core samples from one prick in my breast and they did a needle aspiration on one lymph node, but several places on it. 

They said the results usually take a week or two to get back, but she wanted to get mine faster. I'd know by Thursday at the latest. She'd call me as soon as she knew everything. 

I went about my life. It had to be negative, right? How could it be positive? I tested negative for BRCA, I am young, and healthy. How can I have cancer? The odds (I did them) were something like .002%. Maybe adjusted for family history, they would be higher later in life, but I am too young for my insurance to even cover mammograms yet.... right?  

The specialist called Tuesday evening. She had bad news. She needed me to find a private place (I was at work) where we could talk. Every sample collected was malignant. It was in the lymph node sampled too. "We don't know much more at this point," but I told her to call me as soon as she knew anything, and she did.

I called mom and dad. And Elise and my boyfriend. I drove myself home. I cried. I got home. My friend got home and cooked me one of my favorite comfort meals. 

I was able to secure an appointment with one of the country's leading breast cancer surgeons (Dr. Farrar) for Thursday, December 9. 

More on the diagnosis....

More information came back about the very naughty breast and its tumor. It's triple negative (don't google - it's bad), grade three, IDC cancer. I was initially staged around a 2A*, but they told me that the staging may change after they examine all the nodes. 

And I have a plan .....

Mom and dad flew up. We all went to the appointments at the James. I saw a surgeon, radiologist, and medical oncologist. It was an all day affair. And (longest story short,) they gave me an action plan.

• Surgery: Wednesday, December 14, 2016: Lumpectomy and removal of all nodes from left side 

• AC (Chemo Round 1): Starting Wednesday, Jan 11, 2017; four treatments, one every three weeks. 
• Taxol (Chemo Round 2): Starting on Wednesdays in May 2017; 12 treatments, one every week.
• Radiation: Likely to start August or September 2017, time TBD, likely 30-45d

They will evaluate me along the way to see if the cancer is responding to chemo and adjust course if it isn't. They opted to not do the mastectomy because it hasn't been proven to be any more effective than removing the affected tissue. They will all remove the nodes as a precaution because the cancer is aggressive and fast growing.* 

Now, y'all know almost the same amount I do. I know you're sad. I am sad. Mom and dad are sad. But, we have a plan. I'm ready to get all this treatment stuff over so I can get on with living. Please feel free to reach out to me directly with questions or comments. 

What's next? 

I'll update this blog as I know more. Follow my "cancer journey" (as everyone keeps calling it) if you'd like. 

Prayers and thoughts of love willingly accepted. 

Oh, and do self exams!!! They can save your life (hopefully  )!


*Note: After surgery, I was updated to a stage 3A. Cancer was in 6/12 lymph nodes and the tumor size was 2.4cm. ...but, more on that later. This is just the beginning.