Friday, December 1, 2017

Day 364 | (Almost) One Year


Happy One Year.

It was a year ago (less a day) that I had the biopsy where the doctor said, “I’m still hopeful (that it’s not), but I really think this is cancer.”

In many ways, this year felt like a week; in other ways, a lifetime. I can barely remember my life before this. A time when going to the doctor was an exception to the week instead of a feeling of complete normalcy. A time when the constant worry of tomorrow wasn’t present. A time … before cancer.

I’m so happy to have made it one year, but in many ways, I’m stuck …
  • Between a place of celebration, for making it this far, and mourning, of what my life was (or could have been) pre-cancer.
  • Between a sense of hope and fear, both for what the future could bring.
  • Between thankfulness, for seeing how amazing my ‘village’ is, and sadness, for needing cancer to understand it.

In the spirit of juxtaposition, joining the c-community has been weirdly wonderful. I have made friends around the world going through a similar story. You see the best side of it – the eight year celebrations, the chemo babies thriving, the what’s-now-four-years-and-should-have-been-six-weeks stories; and the worst, the scan-xiety, how every ache and pain is the cancer coming back, the stage IV diagnoses, the families left behind…
Mostly, I just want to tell everyone how thankful I am. Thankful I am that they were there for me. Whether it was post-surgery, when every surface in my house was covered in flowers or yesterday, when a friend texted to see how I was doing. I am just thankful! 
  • Thankful for the after-chemo-packages, when two special groups of friends – my soritiory sisters and DC book club – sent me packages, forever lightening my ‘chemo Wednesday’ dread.
  • Thankful for the stories and the cards and the prayers.
  • Thankful for one of our family friends, who sent me a card every week through the darkest hours, with stories of hopes, with prayers, and well wishes.

      (And the everies.)

  • Thankful for my family, who took me to breakfast every chemo before getting stuck 18 times and filled with poison.
  • Thankful for my husband, for forever wiping my tears, holding my hand, and being stronger than I have ever been.
  • Thankful for our little boy, who is (mostly) healthy and (mostly) happy.
  • Thankful for my sister Elise, for taking on my fears, without minimizing them.
  • Thankful for my inlaws, for their prayers, visits, and love.
  • Thankful for Holly/Lesli/DL/DD/Paula, for being our extra family here in Columbus.
  • Thankful for my Aunt Therese, for making the United Columbus flight in for chemos.my hospital stay.our wedding.Baby G. (and much more).
  • Thankful the rest of my family, for lightening our load.
  • Thankful for every.second I can forget about the cancer.
  • Thankful that my workplace has been so amazing through all of this.
  • Thankful for HAIR returning.
  • Thankful for everyone just checks in on us. Sends a text. Asks how we are. Doesn’t dwell on the cancer. Makes us feel NORMAL, during a period of anything but.
  • Thankful for all the G-loving, for everyone that welcomed our JOY in a period of despair.
Thanks to all of you. For being there, for reading, and for ALL the well wishes. They are always appreciated and felt deeply. We couldn't get through this without you.

Thursday, November 2, 2017

Day 336 | Hand Foot Syndrome

Oral chemo is 25% finished today. And overall, going okay. The biggest side effects are “life altering” stomach issues and Hand Foot Syndrome - where your hands and feet blister, peel, hurt, turn red, etc.

Ways to minimize the issue - Vitamin E has shown to help, 40% urea cream, socks on all the time, and (cancer cure all) - aquaphor. 

I’ve done all of those, but last weekend - it felt like little blisters were forming around my feet. 

Today, they are more pronounced. I’ve been really trying to wear socks and do the rest of the “could help” things. Here’s hoping no large issues so that I can finish on time. 

Only positive I saw saw that Hand Foot Syndrome is tied to overall survival in a positive way for me.

Until next time ♥️ 

Monday, October 9, 2017

Day 312 | 101 Appointments

In cutting off my wristband after PT* today, I wondered...how many appointments have there been? 

Today marks appointment 101 for 2017. That doesn't include my 6 days of inpatient stay. Or appointments from my "regular" OB (heyyyy Dr. Hackett). Or appoints for G. Or the NICU. Or you know...giving birth. 

It also doesn't include anything for 2016 - diagnosis or surgery. 

It does include 33 radiations, 16 chemos, high risk OB scans, and countless appointments. About 25 hours a week at the doctor while I was out on short term disability.

That's a whole lot of wristbands. Glad I didn't start a collection early on - scrap booking cancer seems really weird to me.

PS - Oral chemo is going well. Nothing major to report yet. 


* I am losing sensation in my right hand because of cording around the median nerve. Cording started because of scar tissue buildup after 4 adriamycins / 4 cytocans / and 4 taxols to the arm. 



Wednesday, September 27, 2017

Day 300 | Last chemo-less day for 169

Starting Xeloda | Oral Chemo

Today's my last chemo-less day for the next 169 days. 

Well, that's sort of true. With Xeloda, oral chemo, the next stop on the cancer train...it's two weeks "on" (actively taking pills), one week "off" (allowing your body to recover) x 8 cycles. 


So, I'll be in treatment for the next 169 days.


It will take me to 15 March if everything goes well. I'm assuming there will be some sort of delay, so I'm mentally preparing to be in treatment until April.


Last night, we had a Last Supper, with champagne, beef wellington, cheesy cauliflower, potatoes, chocolate covered berries, and lemon tarte. 





Return of Hair!

As you can see, my hair is returning. It feels pretty nice to not have a constant breeze up there. =)


End of Radiation

The wound team at work (and my Google-loving husband) helped me treat my neck wounds. They are mostly healed now. It's amazing the difference (the bottom picture isn't even the worst of it).

On Radiation, I never had fatigue. Just burns. and Just on my neck. So, even though the treatment has been daily, it feels like I've been on cancer-acation. It'll be a bummer to head back to treatment tomorrow. 




More on X

Xeloda details here. It can take the 5 year survival rate for TNBC from 70ish% to 80ish% (info here). It IS chemo, but it's taken through a pill. If I handle the pill, I need to wash my hands immediately and SHOULD NOT touch G. Because, chemo = poison. Even in a pill.

I will take four pills in the morning. Four at night. Both should be with food. You should not drink on oral chemo (as it is processed by your liver). 

Known side effects:
  • Hand/foot pain/blistering in 75-85% of patients
  • Diarrhea
  • Mouth sores
  • Vomiting 
  • Reduced appetite
Important to note that it shouldn't impact my counts as much as IV chemo, which is good because my WBC still is hovering around 2, which (according to my care team), "is not surprising given the levels and length of time I had chemo."

So, in summary, Xeloda or "X" doesn't sound swell, but 
if it's 169 days for the rest of my life, I'd do it every.time. 





















Wednesday, September 13, 2017

Day 286 | "Those Women"




Suddenly, I am one of "those women".

Women I looked at sheepishly in the waiting room. Wondering if I'd be one of them - with their hair regrowing. Women who looked strong and healthy...not weak and bald - how I felt through most of chemo.

Though I'm here (at the oncologist) today to discuss the next part in my plan - six months of oral chemo - I feel a renewed sense of hope that I may be one of the women here in few years, with longer hair....giving others hope that they will join the hairclub again.

I can't believe how time moves. The 286 days between 12.02.16 (my diagnosis day) and today feels in some ways like 286 weeks, and in others .... like 286 seconds.

Today, I am stronger, though slightly more burned, than when I last saw my oncologist. 

Today, ....
- I have a healthy four month old, instead of a swelling belly. 
- I have more rising hope than rising fear. (I still have fear, but it's less allconsuming). 
- I'm still happily coupled (oh, and yah, and now, we're all married and stuff). 
- I still have a rock strong foundation - one of the best support systems I've seen. 
- I'm back at work, worrying about normal things - like spreadsheets, daycare, and ....did I leave money for the cleaning ladies? (No, but really, did I?) 

Cancer worry isn't gone. I still use my sick passport more than my healthy one.* I still see doctors more than friends. I still ache for a day when cancer worry doesn't bog down my mind on an otherwise idle Tuesday. 

But, now, I think that day could be a possibility.

I think it could be soon when I forget about the cancer...for an hour. A day. A week .... well, actually, I can't imagine a time when I'll forget about the cancer for a week. 

For now, I'll take the downshift from being a full time patient to part time. Allowing me to spend time and mental energy doing other mundane things....Like worrying about paying the cleaning ladies.

Today, I signed up to be a mentor to other women going through this cancery hell. I can coach them, like others before me coached me (looking at you - KACM crew.)

So - Here we go. 6 more radiations and 6 months of xeloda (oral chemo) - in a trade for hopefully the rest of my life.

*From Susan Sontag's Illness as a Methaphor, "Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."




Wow! - Hair!! Eyebrows!! & Lashes!! (and radiation burns)

Friday, August 25, 2017

Day 267 | Radiation & Back to Sick-ish

Busy Living


Sorry that I’ve been not blogging. I’ve been busy living.

Since about three weeks after the end of chemo, I have felt moderately normal. Though my WBC counts weren’t really rebounding, my RBC was almost normal. For the first time in a long time, I didn’t feel awful. I could grocery shop without needing a rest. I still needed to avoid germs, but I could go in public without fear of immediate illness. I started to imagine what a life could be like post-cancer.

I returned to work at the end of July. It felt nice to have familiar parts of my brain click. My husband and I celebrated his birthday (early) and my aunt’s birthday (on time) in Vegas over 08.11. We’ve been taking care of Georgie, who for the most part, is a dream baby. He’s almost 17 pounds at 3.5 months (a far cry from his little preemie birthweight). Until last week, he was sleeping through the night. I’ve been working out. 

I’ve been …. just … living.


Radiation Overview

I started radiation on August 7th. Every.morning.for 33 business days*, I get radiated. My treatment plan "one of the hardest" they have ever constructed because of my “interesting” rib anatomy (basically going in a bit more than most people’s ribs) and “perky” breasts (no joke, highfive to my husband?). As a result, they have me doing a technique deep breath hold, where I have to hold my breath as long as possible to be radiated. They are also doing IMRT, which is … “Intensity-modulated radiation therapy (IMRT) is an advanced mode of high-precision radiotherapy that uses computer-controlled linear accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor.”

IMRT is typically done when there is high levels of lymph involvement and usually means that the tumor’d breast is removed. (Mine is intact because of tumor location and size).


Daily Routine

Typical radiation appointments are 15 minutes. Due to the complex nature of IMRT + Deep Breath hold…. Each of my appointments was slated for an hour.

Strangely, I am an excellent breath holder. It’s a really weird thing to be good at, but the radiation nurses are consistently impressed, telling me I am the best breather they’ve ever had. Because of my A+ breathing, my appointments are usually 35 minutes.
The radiation dose to my heart is 350. Maximum is 500.

They are radiating pretty high – up my neck. I can feel the pain in my throat starting to creep up because of the radiation effect to my esophagus.

I am 45.45% finished (which I’ve rounded up to 46% mentally). Secondary effects (skin changes, sore throats, etc.) peak one week after the end of treatment. For me, that will be the last week of September.

I was really enjoying not feeling sick, it’s such a bummer that I can feel all the radiation effects settling in now – local pain, throat pain, tiredness (though that may have been my 4AM wakeup calls from my hungry baby).  

You can see the redness here:




Till next time, that's what's new.


*What is super weird about radiation is that it’s important enough to require daily treatment. What’s weird is that it’s only on business days. 

Tuesday, July 18, 2017

Day 229 | Holding carbo again

Bad news Tuesday. 

My WBC is lower than it was last week. The ANC level is .7. (.9 is the cutoff for chemo.) Overall WBC is 1.3. 

So....

NO CHEMO: I will not get chemo this week again. Because this last cycle is just a carbo "boost", they may scrap it and just start radiation. 

The further out I am from last treatment, the less efficacious the last cycle of carbo will be anyway. ...Meaning that I would be facing increased toxicity with lower expectation of results. 

Extra Neupogen not recommended at this time....They think my body is just shot after 6.5 months of chemo. 
--
NEW BIOPSY: I have another supraclavicular biopsy scheduled for Friday. They will use these results as a proxy for pCR (pathological complete response, meaning chemo killed all the cancer). Between 30-50% of TNBCrs have a pCR. 

The results of that will help determine whether I will push for the last carbo or not. 
--
RADIATION PLAN: I will meet with radiation oncologist tomorrow to plan with her either way. We will execute against plan next week if no carbo can be given. Will execute in two weeks if carbo can be administered. 

I can expect about 7 weeks of radiation. 
--
ORAL CHEMO: Xeloda starts one week after rads - with or without the last carbo. I will do eight 21-day cycles. Two weeks on, one week off x 8. 
--

SURGEON VISIT: Saw my surgeon today. He says hi (kidding). He said I am physically normal. No new suspicious lumps or bumps. Small yayyyyyyy!!

Wednesday, June 28, 2017

Day 209 | Hip Results & The End of Taxol Wednesdays

BENIGN HIP TUMOR

Hip was benign. I actually haven't googled what it is because what it's not matters so much more than what it is. It is NOT CANCER. It is a tumor, called a myofibroblastic proliferation.* 

But...Tumor, smumor. I just care that it won't kill me. (but unlike that saying, it also won't make me stronger...at this point, we can just stop at "it won't kill me" and go home) 


Waiting

Waiting is one of the hardest parts of cancer. 

You get scans. And wait. You get a biopsy. And wait. You get to the doctor. And wait. They hook you up to machines. And wait hours for the chemo poison to fill your veins. You wait for side effects - I waited for my hair to fall out (it did, on schedule) for the neuropathy to start (it didn't), for my blood counts to dip (they did). You wait for a surgery date. And wait to heal. You finish treatment, and wait to see if worked. You go back to the doctor. And wait for them to see you. Then, when you're "all done" - You wait to see if it comes back (and hope / pray / think it won't). 

Actually, waiting isn't only the worst part of cancer, it's what we do the most. But, waiting for scan and biopsy results is the absolute worst.


Waiting on my results

Today was hell. Actually, every day since they told me "we think it's not nothing" has been hell. Every day, thinking about the worst. Thinking about going through a different type of chemo, about continuing treatment for breast cancer, about what "a different type of cancer" could mean for me and my family. Thinking about not seeing George grow up. Hoping that I can get to a point where he'll remember me. I folded his 12+ month clothes, wondering if I'd be the one to take them out of the box.**

The actual biopsy was fine. I don't think I talked about that, but it wasn't too painful. I asked them to actually knock me out, and they did. I was fully asleep (unlike the port surgery, where I was cracking jokes to the surgeon). 

The biopsy was Tuesday. They said that I should have results by Friday at the latest. It didn't look like mets (metastatic breast cancer), but they needed to rule it out. People don't die of caner in their breast, they die when the cancer travels to other parts of the body - major organs.

The tumor looked most like a desmoid, which is a super rare non-cancery cancer. (A type of "cancer" that can't travel to other parts of the body). There are 900 desmoids annually in the US. (who the eff knew about a myo-whatchamacallit at this point).

I got to chemo today (my last taxol - yay!), and asked about my biopsy. I'd been calling every day for results. And today, they had them. 

More later, my husband's home. 

Bottom line - NO CANCER! #YAY!


*After typing this, I'll admit it...I googled. But, mostly to check my spelling. The first article on google said, "tumor is an uncommon lesion of unknown cause". Whatever, the cause isn't cancer, so who cares. 
** I realize this is super morbid, but it's what the mommies with cancer fear the most. 

Saturday, June 17, 2017

Day 198 | Hip Biopsy

Why biopsy?

I am having a hip biopsy, and I've had a lot of people ask about the biopsy...so, here's all I know.


Why MRI the area in the first place? 

The area of my hip lit up on the PET (showed a soft tissue nodule within the left thigh as well as soft tissue mass)...but areas of inflammation can light up and my hip's been hurting for about three years. 


History of Pain

The pain started with training for the Nike Women's half marathon in April 2014 and then running the Baltimore half in October 2014. The pain was consistent with IT band - going from hip to knee and down my left shin. 

I iced, foam rolled, etc. Then, I just stopped running. [Retired]. 1 half marathon + 1 half marathon  = 1 full marathon, aka, enough running for any one person to do. 

The pain persisted. It got better when I did spin class... (Godbless Zengo in DC), I attribute it to extra stretching after class.

In late 2015 - shame on me for letting it hurt this long (I know, I know) - I saw a doctor for it in DC, who told me it was likely an IT band issue that caused hip bursitis, which is inflammation leading to extra fluid on the outside of your hip. I had x-rays done (no MRI) and they were normal, so it was treated as an IT band issue. 

The orthopedic doctor gave me a cortisone shot on in my hip on my 32 birthday. The shot did not help at all. It actually made it hurt worse (the doctor at OSU said it may have been administered in the wrong location). I've been in PT off and on for it for the last year and a half, which seemed to help. The pain flares if I do too much activity (running is a no-go) or drive too long or sit on long haul flights. 


Abnormal PET = MRI

Due to the abnormal PET, my oncologist recommended a MRI of the hip. It seemed super unlikely that it was anything cancerous, but better to be safe than sorry. No rush on the scans because of the unlikeliness. 

I scheduled the MRI a month after the PET. I told the orthopedic doctor here about the scans, and had them sent to him...I thought it would be helpful in my PT. 

The results came back. The radiologist who read the report recommended a biopsy. The oncologist frankly thought they made a mistake. That the radiologist was being overly cautious. 

She had the scans sent to the head of radiology and the orthopedic doctors that deal with cancer. No mistakes. The scans don't look like normal inflammation - they all agreed, abnormal - they need a biopsy to rule out cancer. There are "rice bodies" present in the bursae, which is what caused the doctors to get all hopped up.*


How will they do the biopsy? 

The biopsy will be painful. I'll be sedated and they will give a local anesthetic too. They will take a core sample from the bursa and the soft tissue and probably the bone. More on soft tissue biopsies. They'll start with a core needle biopsy and do a surgical biopsy if needed.


What will the biopsy tell us? 

It's unlikely to be a metastasis of the breast cancer because (a) super weird place to first get a first instance of mets, though there have been journals about bone mets** being found in the hip bursa first...it's still really rare, (b) the pain way preceded the cancer, and (c) would be unlikely for the hip area cancer to grow while the rest of the cancer is responding to the chemo.

If it's not mets, it leaves either "chronic bursitis" (which is still what I think / hope / pray it is) or a DIFFERENT TYPE OF CANCER. W.T.F., amiright? 

Chronic bursitis means that I effed up my hip a while ago, didn't get treatment on time, and it got worse. There are surgeries you can do to help the bursitis, but it's mostly lifestyle changes that help the hip. Noteworthy that the hip got wayyyy worse in the last few months. I thought / think it's because I was waddling towards the end of my pregnancy. 

While a different type of cancer is probably LESS likely than mets, it would strangely be better than mets. It would probably require a different type of chemo and a different set of doctors and would probably preclude me from going back to work anytime soon....but, would most likely be treatable. 

The MRI also showed that I tore my hamstring at some point (wth), some spine compression (L4-L5), and ischiofemoral impingement (a pinching of soft tissues between bone prominences)....causing HIP PAIN. 


If I were a betting woman (and I'm not) - I would bet 85% shot it's non-cancerous. 8% shot of mets. 7% of a different type of cancer. These are just my best guesses - not actual percentages from the doctor. So, if you're praying or sending good vibes - we need all that we can get again (sorry if that's greedy). 

I'll send another update when I know more. 



* Rice bodies can be found in cancer OR bursitis. I guess the way these little rices looked made them unsure which.
** Bone mets is unlikely in TNBC. Only ~9% of mets in TNBC are in the bone. It's most likely to metastasize in the brain first, then liver, then lungs, then other soft tissue or visceral organs, thennn bones.

Monday, May 29, 2017

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! ❤️❤️

Monday, May 22, 2017

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 :-/) 




Tuesday, May 16, 2017

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.

Wednesday, April 19, 2017

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