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!!

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. 

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.

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