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. 

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. 

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)

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 7^th. 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. 

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.