Day 422 | Still kicking

Wanted to check in and let everyone know I’m doing okay.

I know that 90% of the readers will know I am okay because they are my friends, family, or acquaintances who have supported me in real life and on the interwebs.

But for 10% of readers, who are other stage 3s, other  TNBCers, looking for hope or support or medical updates, it’s helpful to know that other people have lived. Have thrived. Have moved past c*ncer.

Whenever I came across a blog (and ... especially on initial diagnosis, I read a lot), if there hadn’t been a recent check in, I’d always assume the worst.

Things are looking up for me. My hand / foot syndrome isn’t bad. I still get some little blisters on my feet. (Hot yoga this morning prolly didn’t help ;). Little cuts on my fingers. But, like I say about all temporary side effects - small potatoes if LIFE is on the table.

I go whole hours not thinking about the c*ncer now. I am working full time, mommying full time, and wifing in between. (Poor P gets whatever is left of me after those two things). We are traveling a lot. Weekend trips in the US. Fancy dinners. Laid back breakfasts. Family. Short international trips. Many grandparent visits. Trying to make the most out of every moment and not stress about making the most out of every moment. Trying to maintain normal and enjoy feeling normal. Looking less like a cancer patient helps.

Well, until next time. Yolo, or whatever the kids are saying 

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.

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 ♥️ 

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.