Day 179 | Port Update

Since the whole pregnancy/baby announcement, I haven't talked much more about just the cancer....which in a way is good. G isn't allowing us to focus on just the cancer. Maybe it's because we aren't really sleeping anymore and every day is a half-awake haze, but it feels like there is just more joy since he came into our lives. We are also busier while simultaneously doing so much less (I am sure other new parents can relate to this). We don't leave the house as much - George and I lack  immune systems and any little bug would require hospitalization - but there is a lot in the house to do. Baby clothes are tiny, but still require a lot of folding time....

Anyway - this blog was supposed to be a cancer-focused blog. I think the lack of sleep is getting to me. 

Port-a-cath ("Port") Placement Surgery

Six days after giving birth, on May 5, I had a port placement surgery. (Messed up, I know). What is a portacath or port? A port is a little device that plugs into a major vein that allows easy access for IV meds and blood draws. Port's subtitle could be the arm saver. 

Remember when I used to be stuck 12x for every chemo treatment? And how sore my arm got (because the poison chemo stuff would burn the veins)? And because I can only use veins on my right side after the node dissection (due to lyphodema risk), I could have been causing long term damage to my only veins. 

Upside, the port prevents the arm soreness. Downside, you need a surgery to place the port AND to have it removed. To insert the port, a doctor cuts a little hole under your clavicle and places the injection site. Then, they use a wire to put a little rubber pipe to plug it into a major vein. The procedure is done under constant x-ray, so they see exactly where they put the little bugger. 

Here is a picture:



I know this makes me a giant baby, but the surgery hurts! My port hurt more than my lumpectomy (though I really hated the drain from the node dissection, so not sure I would pick either of these surgeries to have again). My port is on the right side. It needs to be on the opposite side from your cancer because of radiation risks with open wound. You can feel and see the little device and the "pipe" - feels like a plastic box and rubber tube under your skin. Though, it's been too sore to really touch it too much yet. 

To use (or access) the port, they stab a 3/4" needle into the base (through your skin). Yes, this hurts. You can use ice or lidocaine cream to numb the skin to minimize pain. You can hear the insertion. It sounds like a little thud. They put a clear pipe outside, flush the line, and you can use it for blood draws and any IV meds you need. 

Though it's painful, I'll admit, it's been really nice not having to spend an hour each session trying to find a good vein. Just one poke, and I'm good!

Next blog will be an update on my new chemos and associated side effects - carboplatin/ taxol blend. 

Hope you and your family enjoyed Memorial Day! ❤️❤️

Day 172 | Triple Negative Breast Cancer while Pregnant

A lot of people asked me more about my diagnosis after I told them I was pregnant. Here's the medical side of the story.

Finding the Lump

I found the lump when I was about 13 weeks pregnant. I was doing a self check in bed - you can generally feel lumps better when laying down (good hint for your self checks). I told my better half and we agreed that it was weird, but probably nothing - there are lots of changes that come with pregnancy. I had an appointment with my OB in two weeks anyway...The rest of the story is mostly the same as I described it initially, but with the caveat that all the practitioners knew I was expecting. 

Some Stats

About 1 in 3,000-3,500 women receive their breast cancer diagnosis while pregnant, which is ~3.8% of all new breast cancer diagnoses. The Spielman Center said I was their fourth pregnant patient in the last year and a half. In Ohio, I've met a few more women that have gone through treatment at Ohio Health too. 

This is all to say that cancer while pregnant isn't *that* common, but not totally rare either. Since my diagnosis, I've e-met many women around the world who were diagnosed while pregnant. There's also an amazing resource called Hope for Two, that helps consult pregnant women diagnosed with cancer. 

About 20-30% of women diagnosed with breast cancer while pregnant are recommended to terminate the pregnancy, which is not necessary. (This opinion luckily wasn't presented to me). If you're in the second trimester, it's possible to have cancer treatment almost like a non-pregnant woman. It's not easy - makes the medical side a little more tricky mostly because the data on treatment options isn't rich. There aren't 4 million cases to reference, but there *are* some cases with very good outcomes. 

No Coffee...but Chemo?!

It seems crazy to think that you should restrict coffee and Tylenol, but are allowed chemo while pregnant. However, plenty of women go on to have completely normal pregnancies  / babies while undergoing chemotherapy because (for the most part) the chemo molecules are too big to cross the placenta. Now, different types of chemos carry different risks. Generally, 

• AC (cyclophosphamide, doxorubicin) are the most tested type of chemo. 
• Taxol has been studied a fair amount, and has been shown to be okay.  
• Carboplatin has been studied less, and in animal studies, crossed the placenta with some skeletal implications (note that your skeleton is mostly formed by the second trimester). 

I opted for AC followed by Taxol. Waited on the carbo till after delivery - 5.10 was my first of four. 

Chemo isn't recommended after 35w, because it can impact (a) the mother's counts, which can lead to increased infection rates after delivery and (b) the baby's counts, which are important for the baby to ward off infection too. My last treatment was at 35w5d, which was cleared by my high risk OB. 

George was delivered three days after my fourth Taxol. I rec'd my last chemo on Weds., and went into labor on Friday.

"Chemo babies" tend to have lower birth weights and can be born earlier (the mean gestational age at delivery was 35.8 ± 1.9 weeks in a study of 104 women/children), but birth defect and growth restriction rates are the same as the general population. And, even though the patient is bald, the babies can be born with a full head of hair.

George was born with hair because he didn't get that horrible AC stuff like I did. He was born early (36w1d) and skinny (4lbs 15oz), but a long length (19 inches) with a very big head (90th percentile :-O ). 

It's good to note that having cancer while pregnant can elevate your AFP levels. High AFP levels can indicate spina bifida, which they can test for in a high-resolution ultrasound as early as the second trimester. 

It was a pretty terrible week when we got the "high AFP" / high risk for spina bifida call a week after my cancer surgery. George was okay, the AFP levels we think were related to the cancer.

If you're undergoing chemo while pregnant, you'll get all.the.doctors. 

I had my oncologist working with my neurologist, consulting with my high risk OB and my regular OB. (You can keep a regular OB as a voice of sanity in all this).

Pregnant with Cancer | Major Decisions

• Surgery before or after chemo - I had surgery first, which is called adjuvant treatment. In hindsight, I wish a little that I'd had neo-adjuvant surgery (surgery after chemo), a treatment path most typical for young women with triple negative breast cancer. I had surgery first because of timing. Anesthesia / surgery can induce labor, which is riskier the later in the pregnancy the surgery is performed. They were afraid that I would go into labor at 26w if they did chemo first, surgery second. Having adjuvant treatment is one of my only regrets.
  
  Most TNBC clinical trials require you to have neo-adjuvant treatment because it allows the clinicians to measure your pathological response to chemotherapy. If patients have a pathological complete response (pCR), they are much less likely to have a recurrence and have a much better long term prognosis. By not cutting out the cancerous tissue right away, you know how well your cancer responded to the chemo. Most clinical trials require neo-adjuvant treatment with some residual cancer (non-pCR).
  
  
• Type of chemo - I outlined some of this information above. Originally, my oncologist felt uncomfortable administering Taxol during pregnancy...but my high-risk OB and I did a **LOT** of research, and we decided it was best for our family to continue my treatment - allowing George time to grow and continuing to kick the cancer while it was down.
• Delivery date - This is a big one. In my file, there are induction dates as early as 31w. Time in the NICU (without good reason) wasn't in our plan. Having our "normal" OB helping us through this was very helpful. The normal OB, high risk OB, and oncologist settled on 36w, on 4.28, without the Taxol. After we decided to add in the Taxol, we were waiting for 38w - more cooking time for G. I'd resume chemo 11-12 days after delivery. G came at 36w1d, and I started chemo 11 days after delivery.
    
• Additional ....
• Surgery - Every time you're under anesthesia, you have a risk of early delivery. I chose to wait till after deliver to have my port placed. So, 6 days after delivery, I had a little surgery and I now have a port.
• Meds - All the supplemental medications need to be cleared through pharmacy to ensure they were okay for the baby. I chose to not take a bunch of supplemental meds, including pain medication after surgery, to minimize risk to the baby.
• Scans - You know that little form you sign when you have an x-ray to say you're not pregnant? Turns out x-ray techs hate giving scans to pregnant women! I had two chest x-rays and two mammograms while pregnant. They put a lead skirt around me from my ribs down to avoid risk to the baby.

Those were the major considerations I faced. Hope this is enough info for today! I'll write next time about starting carbo/taxol and what could be next for me. 

In the meantime....

A few pictures

Matching my baby

Chemo with a port!

Some hair growth (possibly before losing it all again on carbo :-/) 

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 146 | Third Taxol

Third Taxol in the books today. I'm pretty pleased that I am 25% finished with this flavor of poison. 

Overall Taxol Review

Vs. AC: Taxol has been easier than AC from the very first treatment. No more mouth sores. Some semblance of an appetite. Less fatigue. Better tummy (not 100%...but much better!). 

Vein Issues: The vein trouble has continued. The first treatment had eight sticks, with three nurses. The chemo nurses have a rule that they can only stick you three times each...so, three nurses tried to get a good vein without luck till stick 8, leaving me with some gnarly bruising. I will probably get a port placed before carboplatin.

Pre-Meds: ~30% of people have some sort of allergic reaction to the preservative in the Taxol, so the pre-med mixture for Taxol includes Benadryl. Reactions vary from some light hives to full on cardiac arrest. The first infusion requires a nurse to watch you very carefully, looking for any possible reaction. 

Luckily, I didn't have any side effects to the Taxol. 

...But the Benadryl, which during the first infusion was injected directly into the IV, was just awful. The room started spinning. I felt faint. I almost vomited. My mom and husband looked pretty worried. During the second treatment, my mom and mother-in-law were with me. I felt sick and then almost immediately passed out from the benadryl. 

Other Side Effects: The major side effects from Taxol are: low red/white blood cells, hair loss - especially eyelashes/brows, diarrhea, nail loss, leg/muscle pain. For me, my white blood count is HIGH! YAYYYYY NEUPOGEN! It's the highest it has been since starting chemo. 

Taxol has taken a toll on my red blood cells and hemoglobin though. If your hemoglobin drops below 8, they will not administer chemo. Mine is 10 right now....just needs to keep strong enough to "hit me again".

Here are my counts if you're interested:

I am also losing my eyelashes/brows. Here is a 'during AC' vs. a 'during Taxol' picture.

Taxol Today: Today, RBC was not too low for a chemogogo. It was the easiest chemo yet. No pre-meds. No sickness. Only one prick. Minimal bruising. 4 hours instead of 8 at the doctor.  

What's next?

- One more solo taxol treatments

- PET scan
- Port placement
- 8-9 Carbo/Taxol cocktails

Day 117 | Musings on what to say to those with cancer.

I love that through this terrible illness that I have been reunited with so many friends. It frankly sucks that it takes cancer or other tragedy to do that.

This article talks a little about what it feels like to realize your mortality and a lot about what to do when someone you love faces their mortality.

There are so many ways to be there for someone who is dealing with illness. I don't know if there's a "right" way to be there for someone going through something so severe. ...But I do know that it's not shaming the way someone has dealt with it.

No, I am not talking about active shaming. Not things as overt as, "you gave yourself cancer." I am talking about other kinds of shaming, like, "You should have been getting mammograms earlier."

I wish I had too. Don't know if that would have changed anything for me. My cancer is really aggressive, and they guess it grew over a pretty short period of time. (And it's damn lucky that I did self exams ... which I know I have mentioned :-).

Truth be told, I tried to take care of myself. I have eaten mostly organic for the last three years. For other health reasons, I stopped eating preservatives and upped my exercise three years ago too. I was tested for every type of genetic mutation related to breast cancer because I have a family history of a totally different type of breast cancer. To no avail...all the tests were all negative. There was no reason to be extra vigil about breast cancer.

In the time since being diagnosed, I have learnt a LOT about TNBC. My disease. My prognosis. And really, what I have learnt....it's mostly bad luck that caused me to get cancer. Me to get it instead of you or your sister or your other friend. Just. Stupid bad luck.

I am not sharing this article to say, "stay away." I love the support that so many of you have given. I double love "been there" advice. People that are breast cancer experts or have gone through chemo....keep sharing your personal experiences with the disease. If you read a rad article about some cool new treatment protocol (it's unlikely that I haven't read it - unless you love to read clinical trials), please free to share it. If you're a nurse (& I LOVE NURSES - they administer most of my care), and know some cool way to make my veins stop hurting all.the.time, tell me.

....But, please don't tell me or someone else with cancer / MS / Lupus / etc. what they could have done to prevent their disease or that some strange miracle will cure them.

I understand my treatment options. I have read so many things - I know a lot about drugs that I can barely pronounce because they've only been in text. Actually, I have treated this illness like a full time job since going on short term disability.

And - I hope that acting like it's a job will help me to have results. An onco with whom I recently spoke told me I was in the top .01% of educated patients, and that included health care professionals. ...but, I don't know if that will make me any less likely to have a recurrence.

Cancer affords you some choices - I chose not to have a mastectomy. I chose to have all my nodes removed (okay, well, the doctor sort of made that choice....But I chose to trust him.) I chose chemo. Actually, I chose 4 kinda of chemo. I will choose radiation. And, if the cancer is still there, which it may be....I will elect more medicine. Likely, I will choose Xeloda because I am not eligible for ... any .... trials.

This isn't to say that I only choose drugs. I also choose to exercise. I sometimes choose green veggies and sometimes, I choke down pizza.

I chose to go to yoga this morning, because exercise has been shown to help with TNBC. It didn't have to be yoga. I could have walked to the store or down the street. Hell, if I am honest, sometimes, it takes all my strength to walk down the damn stairs. Those days, I don't choose  yoga or walking.

....but, I get out of bed. Even some days when I feel so overtaken with sadness and grief over what I am facing and having to be so mortal "so young", I keep going.

If one diet or one type of food cured my cancer, I would only eat that food....Literally. I would eat it till I was sick. Then, would keep eating. Honestly, I would choose to eat only spinach forever over getting poked, prodded, and poisoned. I'd choose the treadmill over radiation (and I really hate running), but those aren't the kinds of choices I have right now.

I do choose to be mostly positive. It's not all the time, but it's most of the time. Sometimes, I can't help it - tears choose me. But, as much as possible, I try to choose yoga and walking and smiling and being with people. And when I can't, I still choose to leave the bed (sometimes, just to go to the couch :-) ).

"It is hard to be with people in grief. It is hard to be with people who are facing death, or with their caregivers. The next time you are, don’t give them stupid advice – they aren’t stupid. Trust they’ve given more thought to their course of treatment than you did listening to that public radio story. Trust yourself to just be with them in the unknown."

Day 112 | Change in Treatment Schedule

General Update 

Can you believe it's been 112 days?! Seems crazy that 1/3 of a year has been dedicated to Cancer. I'm ready to hand the C-word its evicition notice. But, there are some steps in between now and 295ish days...the potential end of treatment. 

I'm doing pretty well on my fourth and final round of AC. Some stomach issues. Some reduced appetite. Some fatigue. More sleeping. ...but pretty well overall. Glad to be done with the "red death". On to bigger / better things ... the next rounds of chemo! ....A little depressing, but, seriously, that's what's next. 

Early Taxol

Due to the aggressive nature of Triple Negative Breast Cancer, and how well I'm tolerating treatment...My treatment is changing again. Originally, the plan was to AC x 4, ending on 3.15, then a break till May for Taxol, a third type of chemo. 

First change, already noted: After reading about some success with trials in Triple Negative, we decided to add carboplatin, a fourth type of chemo, into the mix.  More on "carbo" and TNBC if you're interested.

Now, another change: Instead of waiting till May to start Taxol, I am starting on schedule on April 5. I will take four Taxol treatments, a three week break, and then, Taxol / Carboplatin mix for eight more weeks. With a possible Carbo boost at the end. 

New Treatment Calendar

• 4.05, 12, 19, 26: Taxol only
• 5.17: PET Scan
• 5.17 - or - 5.24: Carbo / Taxol
• 5.31: Taxol
• 6.7: Taxol
• 6.14: Carbo/Taxol
• 6.21: Taxol
• 6.28: Taxol
• 7.5: Carbo/Taxol
• 7.12: Taxol
• 7.26: Carbo boost
• 8.6: Supraclavicular biopsy
• 8.9 - 9.22ish: Radiation 

PET Scans

You'll notice I added the PET scan on/around 5.17. These aren't scanning for a new puppy (though boyfriend has been campaigning for a goldendoodle at the end of this :), it's a full body cancer scan.

Positron Emission Tomography: An imaging test that checks for diseases in your body. The scan uses a special dye that has radioactive tracers. These tracers are injected into a vein in your arm. Your organs and tissues then absorb the tracer.

One of the main differences between PET scans and other imaging tests like CT scan or magnetic resonance imaging (MRI) is that the PET scan reveals the cellular level metabolic changes occurring in an organ or tissue. This is important and unique because disease processes often begin with functional changes at the cellular level. A PET scan can often detect these very early changes whereas a CT or MRI detect changes a little later as the disease begins to cause changes in the structure of organs or tissues.

Okay, Mumbo Jumbo....What does that mean? 

If the PET shows that my cancer is anywhere besides the badly behaved supraclavicular node, this "new" treatment plan my be thrown out the window in exchange for extended chemo treatment and/or clinical trials in addition to or in lieu of radiation.  

I've been on the lookout for clinicals in which I may participate, but seems like a big old goose egg right now...So, hopefully we won't need that step. 

So, that's it for now. 

More chemo, faster...but I'll be finished sooner too. 

For today, I am going to try to do the exercise bike, as exercise has been shown to lower recurrence. I'll also try to eat something....because I guess eating is good =) We made guac and crab legs for dinner last night, so I'm thinking eggs and guac would be a nice meal.  

Day 106 | AC-ya later

What's new?

I finished AC treatments on Wednesday, 3.15! 104 days into this cancerous mess, and I have removed most of the cancer surgically and made it almost halfway through chemo.

What have I learned??

Well, for starters, I have really learned how to be my own advocate. I now have passed general cancer 101 and breast cancer 202. I can talk the talk. Still have a lot to learn before I earn my full MD, but I can converse with the doctor about my care instead of only learning about my disease when I am with them.

I've learned that even when something is pretty scary, it's surmountable. I was much more scared of chemo than surgery. To me, surgery felt like the known entity. You are cut. You hurt. You heal. They get the cancer out. Chemo seemed much more nebulous. You are poisoned. You lose your hair. You can't eat. You get sick. You get sicker. Then, you mostly heal. They may have gotten more cancer out, but chemo's full effect on adjuvant (after surgery) patients is more theoretical than measurable. But! I made it through the "red devil". Now, 12 taxol and 4 carboplatin and 32 radiations (and one PET scan stands between now and the end of this phase of breast cancer.

I've reinforced the power of family. I would not have been able to get this far without the support of my mom, dad, sisters, boyfriend, aunts, and extended family. 

I've learned that online communities can give you comfort. I met a few girls online that have TNBC too, and they have been a tremendous resource to me. I feel less islandy and more peninsulay now. I learn about what it's like to feel cured. What it's like to not. And that feeling totally scared and bewildered is a-ok. 

I've learned to be a resource, sometimes for the newly diagnosed. That positivity can make a difference. It's not all science and figures, but attitude too. The fact is that ...1 in 8 women will be diagnosed with breast cancer sometime in their lives. To be fully open, it sucks that I am among the first in my peer group. But, being in this "first" group, I think being honest and sharing my story will help give people strength later when they or someone close to them fights this battle. 

ALSO! I've learned that routine self-exams ARE IMPORTANT. (Sorry for yelling. But. They are!!). 

I've learned kindness from strangers on the street  - people are generally much nicer and more patient with you when they can see your struggle so outwardly (through baldness). And I've learned to smile through awkward yet comforting conversations about "what type you got" from others fighting similar battles. 

I've learned kindness from friends near and far, old and new. Texts, cards, lovely gifts, visits, and more. I've heard lovely stories about my life that I may have forgotten. I've also heard a lot about others' battles with cancers and similar diseases. This experience has reinforced what I knew to be true - My village is strong and full of amazing people. 

I've learned about FDA trials. Immuno therapy mostly. I've learned about trial protocols - what boxes you need to check to get into a trial. And how important these trials are to advancing the care we are offered. And what my next steps may look like if this chemo radiation surgery thing isn't enough. 

I've learned strength isn't always easy. Some days I look at myself in the mirror and don't recognize who I see. But, even on those days, it's easier to keep going. To keep fighting. Than it is to quit. 

So, we will keep going. And maybe be a bit more bruised, battered, and bald at the end. But, will be smarter and tougher too. 

--

Thank all of you for coming this far with me! Next post, I will let you know what's next for me. We changed the care path a bit. Pushing my body to kick this cancer to the curb faster and hopefully more effectively.