Three Years.

3/3: TNBC Day

On March 3, 2016, I learned I had breast cancer,  specifically Triple Negative Breast Cancer. It was an aggressive tumor, and my prognosis was not particularly positive. I was also 22 weeks pregnant with Finn.

After ten rounds of chemo, Finn was born perfectly healthy and amazing. I had six more rounds of chemo to go, and Finn was six days old when I returned to the infusion chair. I then had surgery, 33 rounds of radiation treatment, and six rounds of an oral chemo (weirdest side effect: I temporarily lost my fingerprints).

I consider March 1 my diagnosis day because that's the day my oncologist uses; it's the day I had the ultrasounds and biopsies that led to my diagnosis. And it's two days sooner.

At three years from diagnosis, the risk of a recurrence for my flavor of cancer drops significantly. It is a huge relief for me..for so long, it seemed like I would never reach this milestone. It is a bit surreal, and part of me wishes my oncologist did routine scans so I could know for sure something sinister isn't still lurking about (I understand why he doesn't, and I agree with it...as long as I don't give into the fear).
Five years is an even bigger milestone, and my risk of a recurrence of this cancer drops to about the risk of any woman developing breast cancer.

Still, that risk is one in eight.

I am the one in eight. I had breast cancer. Between 10-20% of breast cancers are triple negative, and about one in a thousand women are diagnosed with breast cancer while pregnant.

Talk to your doctor about your risk and when you should start having mammograms. Check your breasts regularly. If you find something odd or new or different, ask your doctor. I had no known risk factors, no family history, no reason to suspect the lump I found was anything more significant than a clogged milk duct. If I had not mentioned it to my doctor...if my doctor had not taken it seriously...well, I don't want to go there right now.

Instead, have some pictures.

Questions for the Doctors

When the cancer diagnosis comes, it brings with it several truck loads of fear and another of questions. I have shared the following lists several times (too many, because cancer is a jerk who just won't go away), and I realized today that it's probably easier to make a post for it so I can just send people the link.

Questions on this list came from several sources: others who walked the path before me, questions I found in searches online, and questions that relate to my specific circumstances. They're good as a starting point for your own list. 

I strongly recommend writing your list down. You may have an excellent memory, but with everything going on right now, it's not a good idea to depend on it. Your brain is overloaded and stressed and scared, and that affects your memory. It sucks to be walking to your car and remember something you wanted to ask your doctor. You think you'll remember it; you know you'll remember it...but you won't. Don't believe me?

Picture it: Baltimore, February, 2016. Probably around 9 pm. Kevin's reading Harry Potter to me; yes, we're adorable. We finally finished the series and the accompanying books a couple of months ago, and now we're reading the His Dark Materials series. It's one of my favorite things we do together. Anyway. I realized I didn't know the last time I had checked my breasts. I don't know why I thought of it. I just did. Divine intervention, I suppose. I decided to check them then, while he read. Almost immediately, I felt it: a huge lump on my right breast. I kept feeling it, trying to figure out how big it was. I finally interrupted Kevin and told him to feel it. Weird, I thought; I'll have to ask Dr. K about it next week. I reached over to my bedside table, opened my notes app to the Dr. K page, and typed: "weird lump". 

I checked the spot a couple more times over the next few days, even outlined it with a pen, because I wasn't sure if it was getting smaller...or bigger.

Kevin came to my appointment with me, as he usually did. I had my exam, which always went quickly, and then I got dressed again and headed into Dr. K's office. He checked my blood sugar chart, and then he asked what questions I had for him. I reached for my phone and pulled out my list. I always had a list. I don't remember the questions any more, but then I got to the bottom of the list. Oh yeah! That weird lump. I told him; he asked if I could still feel it. I tried, and I could. He said let's watch it and check it again in two weeks. 

I'd forgotten to ask about my lump. Granted, I wasn't too worried about it at that point, but still. I'd forgotten to ask. Always write your questions down. Two weeks later, I still had the lump, and I was sent for an ultrasound, which led to the biopsy, which led to my diagnosis.

You can copy and paste these questions into a Word document or a notes app on your phone. Then delete the ones that don't apply to you, and add any other questions that you have. Print the list before your appointment, if you can, or email it to yourself so you have it. Put some space between each question so you can write down the responses, or bring a notebook and a couple pens or pencils. You can also jot down other questions that come to you during your appointment, because surely they will. Again, don't depend on your poor, overworked brain to remember everything. Actually, have a buddy come to your appointment and take notes for you. That's even better, especially in the beginning stages. My mother-in-law came to my early appointments with us and took notes so Kevin and I could just focus on what the doctors were saying. 

I now have a separate note page for questions for each doctor I see (including my son's pediatrician and cleft team), so that I can jot thoughts down as soon as I think of them, instead of having to rely on my very unreliable memory. This system works very well for me, and I feel much more confident and prepared for appointments. 

Here's the list of questions I brought to my first oncology appointments. Many of the questions may not apply to you at this time, but I left them in because they might spark another question for your circumstances. 

Surgical Oncology Questions:

• I would like to know everything possible. Please be open and honest with me.
• Have you ever had a pregnant patient with breast cancer?
• Please explain the pathology report. May I have a copy?
• Are further tests needed? When will they be scheduled? How long to get those results?
• Surgery? What is involved, how long is procedure? How long is the wait for surgery, when will it be scheduled? Lumpectomy? Mastectomy? Is it safer to remove both breasts?
• How long will it take to get the pathology report?
• How long is recovery time? How long will I need to be out of work? What should I tell my supervisor? Can I get a medical leave of absence form filled out from you, if needed?
• Genetic testing: do I need it? When would I schedule it? How does it factor into treatment? How will that change the surgery and or timeline?
• When will I know about chemotherapy, radiation, and other non-surgical treatments?
• Will I see an oncologist? When?
• What are the treatments for my type of cancer? Timeline for each?
• How will this treatment affect my life? Side effects?
• When will I have a treatment plan?
• What can I do differently right now to improve anything?
• How does my diabetes factor in?
• Will the baby need additional tests and monitoring because of this?
• Could breastfeeding still be an option?
• Can you recommend anyone for a second opinion?
• What would you do in my shoes? Or what would you recommend if you had a family member facing this?
• Can you point me in the right direction for figuring out insurance questions and coverage vs out of pocket costs?
• Do you have any handouts with information?

Medical Oncology Questions:

• When do I start?
• How often will I receive treatments?
• What type of treatment will I receive (pills, IV, etc.)? Names of medications that will be used?
• Will I have a port (also called a portacath)?
• Should I bring someone to my treatment sessions? Will I be able to drive afterwards?
  Is treatment on an outpatient basis?
• How long does each treatment last?
• Can I schedule treatments for after work?
• How can I expect to feel following treatments? Will I be out of commission following each treatment? If so, for how long?
• What medications will I have for side effects like nausea/vomiting, fevers, etc? What are the options, and how will my pregnancy and diabetes play into that?
• Can I expect to lose my hair? When?
• Other side effects I haven't considered?
• Is radiation definitely going to be required after surgery, or will that be determined based on how thoroughly the chemotherapy works? Would I receive it before surgery?
• Since surgery won't occur until after chemotherapy, when will my cancer be staged?
• What is my prognosis?
• Are clinical trials appropriate for my case?
• How soon after the delivery of the baby will I start back on chemo?
• Could breastfeeding be an option, even if just for the period of time before I restart?
• How will insurance and co-pays work? Who is the best person to ask about it?
• Do you recommend I see a geneticist? If so, what do I need to do to set that up? Should my close family members be doing anything special at this time?

Scanxiety

Has it really been ten-ish months since I posted? Oh well. Hi, nice to see you again.

I saw my oncologist today, after one of the longest weeks of my life. Last Tuesday, I had a bone scan. It's a fancy imaging procedure where the technician injects a radioactive tracer into you and then does a whole body scan a few hours later to look for areas of concern...in my case, for metastasis.

I've had a bad hip for years. Five years ago this May, I had surgery to repair a torn labrum. It's a ring of cartilage in the hip joint that helps protect it. I tore mine back in the days when I was able to run. The tear wasn't repairable though, so the surgeon just cleaned it up and smoothed things out so I could move more easily. It helped, but I've continued to have difficulty with it, and I've had several more cortisone injections since the surgery. They usually help for a few months before it wears off. No biggie...it's a pain in the ass (literally, even--the pain can radiate), but I can deal with it.

But now...well, now I've had cancer. That changes everything. The fear of recurrence is real, and it is strong. It's bad enough when everything is normal. I have cancer dreams regularly. I sing Finn to sleep and at least a couple of nights a week I find myself crying, praying I'll be able to sing to him when he's five, when he's eight, when he's seventeen and yelling at me to get out of his room for crying out loud!

I had my quarterly follow up with my oncologist in mid-March. As usual, he answered my questions with remarkable patience and a reassuring cache of journal articles and study results to back him up. He pulled up the guidelines from somebody or other about when scans like an MRI or a PET is indicated, and he explained why I do not need them, despite what many doctors in other institutions may order. He also mentioned the risk of unnecessary radiation and the cost-benefit analysis. Okay. I'm good with that. No scans.

Then we talked about my neuropathy, which has improved significantly in recent months, to the point where I stopped taking Gabapentin and found my brain was much, much happier. I can focus better! I can see my entire case load in a week! I feel far more like myself again! I have noticed some of the neuropathy symptoms creeping back in, especially in my feet, but it definitely is not worth the brain fog. I also mentioned that my hip pain is a little worse and said I suspected the Gabapentin had been helping it as well.

The doctor asked how long I'd been having hip pain. This go-around, it's been since the fall. It's been getting worse again, and I'm starting to notice I limp more often. He said that even though he'd just talked about how some scans are unnecessary, there is a low threshold for when he will order them. My hip pain reached that threshold. He explained what the bone scan was and said he wanted to see me back once I had the scan--he always likes to see patients in person for test results.

I scheduled the scan for the following Tuesday. I went in at 10am, got an injection in my arm, laid on the exam bed while a giant X-ray machine of some sort moved around me and took pictures of my hips. I could watch them on a computer screen off to the side. It was cool to watch the scans, but every time something showed up brighter white, I said another prayer.

That part was done within half an hour, but I had to return at 1:30 for the second half of the scan, once my body had time to absorb the tracker. It was snowing by then, and schools were closing early due to the impending snow. I got back to school, saw one more client before the school closed, and then met a coworker for lunch to pass the time until I had to be back at the hospital.

The second part of the scan looked at my entire body. The machine started above my head, so close to my face it nearly touched my nose. I couldn't watch the screen this time. Instead, I alternated praying that it wasn't cancer and doing a yogic body scan to keep my mind from racing too much.

It took longer, and when it was done, I couldn't help but ask the tech what they found, even though I know they can't answer that question. He said he didn't know but the radiologist would read it and the results would be ready in 2-5 business days. The front desk gave me a code to sign into the online portal to retrieve my results.

What shocked me the most was how quickly and how intensely the anxiety set in. When I had talked to my family the Monday before to let them know I was going to have the scan, I told them I was confident it was the same pain I'd experienced pre-cancer and that it was just an extra precaution now because of my history. I believed it, too...mostly.

But Tuesday morning, the day of the scan, I woke with a weight on my chest. It did not go away, and in fact, it got heavier as the days passed. I broke down crying to Kevin several times during the week. Thursday night, I told Kevin about the portal code and asked what he thought I should do. I expected him to say to wait until we saw the oncologist on Monday. He didn't. He said why wait? See if it's there. I waited until we'd completed our evening chores before I went and got the computer to log in. As I cleared the table and cleaned up Finn's toys, my heart was racing so fast I felt like I'd escaped a wild rabid animal chasing me for several miles. My hands were shaking so hard I had difficult grasping objects. Finally, I sat down and entered my information. My most recent procedure, the bone scan, was at the top of the list. I looked at Kevin, took a deep breath, and clicked the link. "Results are not available at this time. Most results take 4-5 business days. Results will not be released until reviewed by ordering physician." Oh. I closed the computer and took several more breaths. Kevin and I hugged, I wiped away my tears, and then I got up and took half an Ativan and went to bed.

For the rest of the week, we kept busy--an intentional move on my part. Saturday Kevin, Finn, and I went into Baltimore for the March for Our Lives. I had to keep yelling at my Anxiety Monster to stop reminding me that I could be marching with a cancer-eaten hip and that maybe this would be the last march of my life. My Anxiety Monster can be a real asshole. We headed out of town that evening to visit a dear friend who lives a couple of hours away and is dealing with her own health issues right now. We commiserated over vodka and grape juice (now known as the Damet Janet, and damn, it is good) and talked about everything from Tom Petty to people who Just Don't Get It to our kids to the ridiculousness of our government.

Sunday night, I was playing on Facebook and saw a post from someone about a Line A Day journal she has been writing in since her children were very small. She talked about how she loved looking back at previous entries and reliving memories. I decided I wanted one and jumped on Amazon to find it. All the ones I could find were five year journals. I broke down again. The Anxiety Monster reminded me that if my cancer had returned, if I was Stage IV, I almost certainly wouldn't be around to finish the journal. I'd be lucky to make it two years. I vented in a cancer support group I'm in, about the fear and how it has turned me into a basket case. I ordered the journal anyway, and then I went to bed, asking Kevin to read to me for a bit first to help calm my brain. He did (we're about halfway through reading Harry Potter and The Deathly Hallows...it's taken us several years to get through the series), but my mind was still racing. Lately, we've been listening to a yoga nidra podcast when we go to sleep, as it usually helps both of us fall asleep faster and sleep better. I also really love incorporating mindfulness into my daily routine. I knew I wouldn't be able to keep focused on the podcast, so I opted for a book that would keep my brain more engaged until sleep, so that I couldn't dwell in the fear. It worked, and I actually slept pretty well.

Today dragged on for what felt like forever. I kept myself occupied, seeing clients back to back--literally returning one to class and getting another all day. Finally, it was 1:10 and time to pack up...and I got a call from the guidance counselor asking me to stop by to talk about a client. That turned into a meeting with the principal of the school as well, and by the time I was finished, it was 1:31, and my 20 minute buffer had disappeared. I walked as fast as I could back to my office--no running in the halls, you know--grabbed my stuff, shut down my computer, and raced back out of the school--I did run that time because no kids were in that area of the building. Traffic was worse than usual. I got to the oncology center at 2:02 for a 2pm appointment. There were eight patients ahead of me waiting to check in. I have never seen it that crowded. Kevin met me at the hospital, having left work early as well. I got checked in and we walked back to the waiting area. We were called back within a couple of minutes, and the medical assistant started to check my vitals. I warned her that my blood pressure was going to be high. I was right. My pulse was high also. We only had to wait a couple of minutes, but even in just that short time, I couldn't keep my tears away. The oncologist came in and asked how I was doing. I told him I was feeling pretty anxious, and as he reached his hand out to shake mine, he said, "Well, I think I can do something about that in about six seconds." I breathed. "Your bone scan was clear. There is no evidence of metastatic disease."

I breathed again. The weight in my chest disappeared.

We talked more about the results and what they did see in the scans (degeneration in my right hip joint, some in my left knee and ankle--never had problems in those joints, so who knows, and some in my shoulders). No cause for alarm.

We talked about the relief I felt, and he mentioned how he remembered me using the term scanxiety before and how he liked it. I gave credit to my cancer support groups, since that's where I'd first heard it. I told him I was grateful he wasn't one of the doctors who orders a lot of scans. I didn't think I'd be able to handle the stress of it.

And then I went to get Finn from my in-laws, hugged him extra hard, and came home. I made dinner, played with Finn, read books, sang to him (yes, my eyes leaked), and then did some of my notes for work. It was life as usual. It's a relief to be back.

Also, Finn said 'pork' at dinner, and it was the most clear pronunciation of the f-word that I think I have ever heard. Later, when he saw his reflection in the chrome of the bathtub stopper, he said 'who's that?' over and over, and it sounded like he was saying 'oh shit.' I love that boy so hard.

Also also, I wore my hair in a ponytail all day on Monday, for the first time in more than two years. I shaved my head two years ago on Sunday. Not all of it wants to stay in the ponytail yet, but it's close enough.

The Titmonster can go suck a rotten egg. I love my life.

I couldn't pick a favorite.

Eddie From Ohio

This is a long overdue post. Back in January, Kevin and I left Finn at his grandparents' house for his first ever sleepover so we could see my favorite band, Eddie From Ohio. This year's concert had extra special meaning for me.

The band is an alternative folky band. Their shows are energetic, engaging, and fun. They have amazing voices. I've been a fan since I first heard them in 2000, and I have lost count of the number of times I've seen them play. The past few years, Kevin and I have gone to see them during their annual show at The Birchmere in Alexandria, VA. It's a three-night performance held either on Martin Luther King, Jr. weekend or Presidents' Day weekend. This year, it was MLK weekend, and we got tickets for Friday night.

When I was pregnant with Finn, I sang one of their songs, Hey Little Man, to him frequently. Since he was born, we've sung it to him every single day. We were amazed when he was first born that simply starting to sing that song would calm him almost instantly.  Most nights, as we put Finn to bed, he begins to settle and is still by the time we get to the end of the song.

I was both excited and nervous this time. I have met the band members several times, as they usually sign autographs and CDs after the show. This time, however, I had decided I would talk to Julie Murphy Wells, who has been an inspiration for years, but much more profoundly in the past year.

Julie is a breast cancer survivor, too. She was diagnosed in 2005. I remember reading the email the band sent out explaining why they'd be reducing the number of shows they were playing. She set up an email account for those who wanted to send her well-wishes. It was her sense of humor that stayed with me, and why she was one of the people I looked to when figuring out how to navigate this world I'd been unwillingly dropped into. Her email address was myleftboob at hotmail dot com. Come on. How awesome is that? I didn't follow her story too closely as it was happening; I was 25 and never considered I'd be diagnosed with cancer ten years later. I remember seeing her play shows in the midst of treatment. I remember being amazed that she was able to do it.

I think it's pretty easy to see that Kevin and I both have relied on humor to get us through this journey. I mean, the blog is called Janet Versus the Titmonster. It's a big part of both of our personalities to deal with challenges by reframing and laughing, but I definitely had a strong example of how to do this when death is on the line through Julie Murphy Wells.

I'd tried to write an email to her a couple of times, and I always felt silly, like I was seriously fangirling. I mean, I was; besides her voice being completely amazing, she really has been someone whose story I keep looking to as I figure out how to navigate being a mom with cancer.

So after the show (maybe my favorite one ever!), Kevin and I waited in line to talk to the band. Julie was at the near end of the table. My voice betraying my nerves, I told her I wanted to thank her. I briefly shared my story and told her how inspiring she has been for me. I fangirled about the music, how much I've always loved it, but mostly how seeing and remembering so clearly how she accepted her diagnosis and how she didn't shy away from it or try to hide it but instead faced it with humor and grace gave me the courage to do the same.

Y'all, she's as nice and genuine as she appears. We hugged, we took a couple of pictures, and she asked me to share them with her. (Oops. I am going to do that before I post this. Can I blame chemo brain for this, too?) (Update: Did this. She replied. She's awesome.)

Anyway, here are some pictures.

No Mo' Chemo

On Thursday, May 25, 2017, at 8:27 pm, I took three pills. They were my last dose of chemo, hopefully forever.

Earlier that day, I texted Kevin and asked him who was picking up the celebratory ice cream cake. He said he would, so I went home after getting Finn and started preparing a fancy dinner, steak au poivre with cauliflower au gratin and green beans (it wasn't difficult, thanks to Home Chef!).

We waited for cake until Finn was asleep, because we're selfish and didn't want to share it was already late, and I had a beer to go along with the cake. Of course I used my Iocaine Powder pint glass. My chemo doesn't dissolve instantly in liquid, but it's still a poison. Kevin told me the Baskin Robbins staff was a bit taken aback when they asked what he wanted the cake to say. He had to assure them the cake was a good thing (it was all ice cream: mint chocolate chip and chocolate chip. How could it not be a good thing?).

The last time I finished chemo, last August, was less of a relief. It's when my anxiety really kicked in, as it was the end of active treatment for a month or more. I've been looking forward to the end of this one. I had a lot of side effects from the capecitabine, enough that my oncologist reduced my dose after the fourth cycle. Indigestion, nearly constant nausea, and hand and foot syndrome (erythrodysesthesia) were the biggest side effects for me. The hand and foot syndrome was the one that gave me the most trouble, to the point where I couldn't walk by day ten or so of each cycle. Once I started the lower dose, it improved significantly. My hands and feet are still blistery, cracked, and peeling, but the associated pain is much more tolerable. I hardly had any nausea for the last two cycles either, and I'm almost back to being able to eat normally again.

I'm glad to be done. I'm still a little uneasy about it though. I wonder when...if...the fear of recurrence will begin to ease. I heard about another trial I may be eligible for that is immunology based. I've requested more information about it and will learn more at my next oncology appointment in a few weeks.

Oh, that's another thing. I don't have to go to the hospital for blood work every three weeks and then back the next day to see my oncologist. I deleted my phone alarms to remind me it's "Chemo Time". I didn't have to wake up early this weekend to eat and then wait half an hour to take the pills. I haven't been nauseous in three days. I won't get another box from the specialty pharmacy with the pills in biohazard bags. I won't have anymore chemo co-pays. Soon, my skin will begin to heal and I won't have to sleep in lotion gloves and socks. Maybe Kevin will stop saying "Pizza Time" in the creepy voice from the Little Caesar's commercial (see Chemo Time link above). Maybe.

I waited until Kevin had proofread for me to mention that hopefully he won't remember that once my counts recover I *could* potentially maybe-if-I-had-to start scooping the stupid cat boxes again. Don't tell him.

Loss

Fuck.
I'm not even going to apologize for the language. Fuck cancer. Fuck fuck fuck.
I'm in a Facebook group for women who were diagnosed with cancer while pregnant. It's been a really helpful, really supportive group.
A few minutes ago, I learned a member of the group died yesterday. I didn't know her personally, just from the group, from reading her posts and us commenting on the same posts. She had triple negative breast cancer.
She finished treatment recently. She had a lot of pain. She saw her doctors. They found more cancer. Her cancer had metastasized, spread to her bones. Within six weeks, she was gone.
I'm sitting at my desk, a pile of overdue paperwork waiting on me, a schedule of sessions that's gone out the window now, because I'm in no condition to see clients right now. I'm sitting at my desk, and I'm sobbing.
I'm crying for her family, for her small children, her husband, her parents and siblings and friends, and all of the people who knew her joy and her wisdom personally and through the magic of the internet.
I'm crying in terror and hatred of this evil beast called cancer, which has taken so many people I love, which threatens all of us, which threatens me.
I'm crying for me. I'm crying because I cannot imagine the pain her family is going through, and yet I imagine it every day. I'm crying because I know the fear she must have felt when she received the news, because it's the fear that lives in my gut and springs up when I wake in the middle of the night and when I walk into my oncologist's office for yet another appointment and when I hold Finn close and tell him I will love him always and forever until the end days. I am crying because I am terrified that her fate could be my fate, and damitall, I want to live!  I need to live.
Her story is not the same as mine. I know that. Her situation is not the same as mine. I know that. I am doing everything I can do to reduce the chances my cancer will come back. I know that. But my cancer has a 50% chance of recurring in the first two years. I know that. I am taking the oral chemo, which showed a reduction in recurrence of around 15% for triple negative breast cancer. I know that, too.  

And then my office phone range because the parent for my forgotten family session arrived, and I had to quick pull myself together, wash my face, and then walk through the school with my bright red and puffy face.
The distraction was helpful though. Who knows how long it'd have taken me to calm down and recover if I hadn't been forced to in a hurry?
But cancer still sucks. Even worse than the fear of chemo harming the baby (although I knew the studies showed it was safe), even worse than the side effects of treatment: the hair loss, the pain, the exhaustion, the stomach issues, even worse than having to stop working before I was ready, even worse than the financial cost, even worse than the chemo brain, worse than all of that is the constant--and rational--fear that the cancer could return. And if the cancer returns, it could mean death. I'm just not ready for that. I don't intend to be ready for that for another fifty years or so. It's not that I'm scared of death, not at all. I'm scared of not living. What a place to be trapped.


I'm not proofreading. Excuse any errors you find.

Easter Musings

Spring. Easter. Heartache. Change. Hope.

Thursday will mark two years since we lost Pantalaimon. I found out on Good Friday two years ago that I was probably going to miscarry, that the baby we had hoped for and tried for since the previous summer appeared to have stopped growing and did not have a heartbeat. On April 20, I had a D&C, as my body had not yet figured out that I was no longer pregnant. 

Last Eastertime, I shaved my head on Good Friday. I donated my hair to Pantene's program and raised almost $4,000 for St. Baldrick's Foundation. I wore my wig to the Easter Vigil on Saturday night. My sisters and their kids came to visit over their (and my) Spring Break, and we had a great time. 

Last Thursday, I saw my radiation oncologist for my followup appointment. It was so weird to be back there. For two months, I hurried there after work, talked with the staff while waiting for my treatment, showed pictures of Finn if he wasn't with me, handed him off to whichever staff member had volunteered to play with him while I got my boob zapped if he was. For two months, I was deeply involved with the staff there. It was my routine; it was part of my life. And then, with a burnt, peeling, painful boob and the ringing of the radiation bell, it was over. I brought in some peanut brittle and a Christmas card, and that was it. Life went back to...well, I'm not sure there is a normal yet. 

Friday, Good Friday, my mother was admitted to the hospital for chest pains and a suspected heart attack. Just this morning, we learned there was no blockage, and they suspect the episode was related to her blood pressure, which she's had difficulty controlling over the last month. We're grateful, so, so grateful that she is okay. She is going home this afternoon. 

Saturday, I went to the Easter Vigil. Kevin stayed home with Finn, as the time overlapped with Finn's bedtime and Kevin was not feeling well. I needed to go. I needed that touchpoint, that connection, that peace and comfort and solace that comes from the celebration. I had said to Kevin earlier in the afternoon that it didn't really feel like Easter. We were out of town on Palm Sunday, and the 7pm start times for services on Holy Thursday and Good Friday were just too difficult with the baby. It was weird for me to not have those moments. I missed them. And then on Saturday night, we gathered in the beautiful sanctuary at First and St. Steven's UCC, and we had an amazing service. We started in the courtyard with the new fire, the new light. We lit the Easter Candle, we sang the Gloria I love so much, the Sing Glory to God one that takes me back to my days at Western Carolina. We praised, we read from the Hebrew Testament, heard phenomenal reflections, read from the Christian Testament, heard more reflections. We sang Alleluia for the first time in over 40 days. I proclaimed the Gospel; David, bishop and pastor, nailed the homily once again. We broke bread, remembering why we do so, remembering that it is only by being broken that the bread gives us life that makes us whole. We shared peace. We shared peace. We shared peace.

Sunday we celebrated Finn's first Easter with treats from the Easter Bunny, which included new toys to match his development, shoes as he gets ready to start walking, and several books. Kevin and I each got some excellent socks, a couple of games (Joking Hazard for me, Catan card game for Kevin), and a few other treats and candy. We spent the afternoon at Kevin's aunt and uncle's house with lots of family, food, and Easter activities. For the past several years, we've had an adult Easter Egg Hunt, where the prizes are booze and scratch off lottery tickets, and the like. This year, with three young ones in the family, we also had a kids' hunt, though Finn and I napped through it, since he skipped his afternoon nap. The other family tradition is the Schenning Egg Picking Contest. It is a big deal. I'd never heard of egg picking before meeting Kevin, nor have most people, even other Baltimoreans. Wikipedia talks about it here, and the Baltimore Sun wrote about its Baltimore roots a few years ago.  Holy smokes. It was more than a few years ago. 1993 was 24 years ago. How is that possible? Anyway, at my first egg picking, I came in second place, losing to Kevin's dad in the final round. This year, I was knocked out in the first round, despite our efforts to boil hardier eggs using the Instant Pot rather than the stovetop (Kevin and Finn both lost in the first round as well. At least those eggs are easier to peel.)

At this time of year, that time which for me is so full of joy and hope but also and fear and sorrow, it has been a week of shared peace. We are an Easter people, and even at the grave, Alleluia is our song. 

Hope 4-2

Today is April 2, known as Hope For Two Day, celebrating women who were diagnosed with cancer during pregnancy. I was diagnosed with an aggressive form of breast cancer when I was 22 weeks pregnant. I had found a lump a couple weeks before that. 

Despite the incredible support I found in family, friends, medical providers, and strangers, it was in many ways a very isolating experience. I have since found I am not alone. I knew there were other women diagnosed while pregnant, but I'd never even heard of another, much less met another. 

In January, I finally went to a meeting of a support group that I'd known about for a while but hadn't ever been to. There, I met another woman who was pregnant and underwent treatment for her cancer. Her child is now about 4 months old. She told me about and added me to a Facebook group for women diagnosed while pregnant or breastfeeding. I have come to love the support of the group and the women in it. There are a couple hundred of us, all different cancers. Some are recently diagnosed; some are many years post treatment. Some are living with metastatic disease. That scares the shit out of me. 

Knowing I'm not alone has been a confusing and powerful experience. It's comforting to know I'm not alone. It's really crappy to know I'm not alone, that other women and their babies have had to go through this as well. Right after I joined the group, someone put together a video of women sharing their stories. I waited until Kevin was with me to watch it, because I knew I would have all of the feels. I cried throughout. So many women. So much strength. So much love. So many uplifting stories. Watch the video here.

Yesterday Kevin and I went to the Breast Cancer Survivorship Conference hosted by Hopkins. We went last year as well, and it was as excellent this year as before. We had lunch at a table with two women who were diagnosed last year, also while pregnant. One was the woman who added me to the Facebook group, and the other is someone I've been Facebook friends with for a while but hadn't met yet. Her child is almost the same age as Finn. The three of us were all diagnosed with breast cancer while pregnant; we were all pregnant at the same time; we all live in the Baltimore area. It's kind of...bizarre. I'm having trouble figuring out how to describe all the feelings it gives me. 

Blerg. I wish I could figure out how to format pictures the way I want to on this site. It drives me batty. 

All the Feels

So this is a post I've thought about writing for a while but never got around to it. It's about feelings...appropriate for a social worker/therapist, yes?

I put on a good face most of the time. I project a positive attitude about my circumstances. Most of the time, it's a true portrayal.

I want to be a bit more upfront. I want to talk a bit about the downside of cancer, about being pregnant and getting the diagnosis, about the toll it has taken on my mental health. I don't think we talk about it enough.

First, I want to say that I try really hard to keep a positive outlook because it's critical to my well-being, both physical and mental. I also often find it easier to be more positive because I have so many amazing people in my life, and you all make it much easier to cope. Kevin is the most supportive and loving person I could ever ask for, and our incredibly amazing and healthy little boy gives me all the encouragement I need to keep going.

But there are days when the monsters creep in. I'm not talking about The Monster, my adorable snuggly puppy dog. I'm talking about the depression and the anxiety monsters. Depression is no stranger to me. But around August, I really started noticing the anxiety. It was new to me, at least the intensity of it was, as was its presence without my usual depression symptoms. At first, I thought it was just normal new-mom stuff. I'd zoom in on the video monitor every time I woke up during the night to check that Finn was still breathing, and if I couldn't tell, I'd go into his room and make sure. I couldn't stop imagining scenarios, horrible scenarios, where something happened to him, or something happened to Kevin, or something happened to me. I kept fearing my cancer would return (it wasn't even gone at this point), and I'd imagine Finn growing up without his mother.

I felt on edge; it was difficult to stay still. I had physical symptoms as well. I'd get a pit in my stomach that wouldn't go away. My chest would feel tight.

It didn't get better. It got worse.

Finally, I called the cancer center and asked to talk with the social worker. I met with her a couple of times, and she referred me to a psychiatrist who works with the Breast Center. I didn't want to take medication. I figured that if I just talked with a therapist for a while, started processing through all I'd been going through in the past six or seven months, it might be enough.

But after a couple of sessions, I decided that I'd go ahead and talk with the psychiatrist. If the therapy wasn't enough (which seemed relatively likely, given my history) and I ended up needing to go on medication anyway, it would be another six or so weeks until the medication would start working. I didn't want to have to deal with that. The anxiety was interfering with my daily life, and I needed some changes.

I met with the psychiatrist, who was shocked I wasn't taking something already, especially something to quell intense periods of anxiety. She said she rarely prescribes those to patients from the breast center, because they've usually been prescribed it already by the oncologist. I assume I wasn't even offered it because I was pregnant, but I also did really well for all of my pregnancy, and even several weeks after.

So she gave me a prescription for Ativan and another for Lexapro. She suggested I take an Ativan before I needed it, to get an idea of how I'd respond to it. I took it on an evening when I didn't have anything to do and when Kevin would be around should the baby need anything. I didn't really notice any difference, but I did sleep pretty well that night.

A day or two later was my radiation simulation. I knew from talking to others that I'd be exposed from the waist up for a couple of hours. I knew it would be hard for me, especially when they said Kevin wouldn't be able to be there for all of it, so I took an Ativan. It helped a lot, and after my second or third radiation treatment, I didn't need it anymore.

The Lexapro has helped immensely. I'm feeling more stable, and I'm much better able to reality check myself when I start going goofy.

There are still rough days. When I found the lump (that ended up just being scar tissue), I was definitely glad for the Ativan. I've used it a few other times, when life just gets overwhelming, and it helps me to find calm.

People like to hear positive stories, positive experiences. Cancer sucks. I try to be positive. I try to be uplifting. It usually works, and I can keep a sense of humor about it. But really, it just fucking sucks. And I'm grateful for the psychiatric help.

Chemo Braain

Chemo brain. It's real, and it's frustrating as all get out. I've been dealing with it for a while now, but it's getting worse. Maybe I'm just less tolerant of it, but I think it is getting worse. I had known about it since my first oncology visit, but it wasn't ever a big deal. I'd laugh off stupid mistakes as either pregnancy/new mom brain or chemo brain depending on my mood and the circumstances and not give it a lot of thought. Once Finn arrived, pregnancy brain wasn't really an excuse anymore, but new mom brain was. Then he started sleeping through the night after a couple of months (yes, we're very lucky), and so I started sleeping better, and new mom brain didn't seem very accurate either. Now I'm 6+ months out of my first chemo journey, and only three and a half weeks into my oral chemo journey, and it definitely seems like chemo brain.

For example:

After the car accident in November, my car spent over a month in the shop. It was finally ready two days before Christmas. I was off that day, and Kevin was working from home. He kept the baby while I took the rental car to go pick up my car about twenty minutes before the shop closed for the holiday. I got there, picked up my keys, said thanks, and walked out to my car. I moved everything that was in the rental into my car, and then it hit me. I had two cars and one me. I called the rental car company and they said they could pick the car up from the shop if I brought the the keys. Phew.

I've driven past the beltway exit to my house multiple times. I still have to GPS the best way to get back home after doing so. I cannot commit the route to memory. On that note, I've also gotten on the interstate going the wrong direction at least three times in the last two weeks. In case you're curious, it's a royal pain in the ass to go south on 95 in morning traffic when you're supposed to go north, and it adds a lot of minutes to the journey. I'd tell you how many, but I can't remember.

I have had to ask the medical assistant at Finn's pediatrician to repeat his weight and height measurements to me on several occasions, because no less than seventeen seconds after she tells it to me, it leaves my brain.

I have missed Punch Bug opportunities because I'll yell out Punch Bug Red when it's clearly a white bug.

I've gotten to the car after a shopping trip only to remember something I needed and had to go back in. This has happened multiple times. An embarrassing number of times.

I goof on the math regularly when making Finn's bottles, which means I often have to mix up more formula at the end. Math has never been my strong suit, but I used-to-could add pretty well.

I cannot tell you how many times I've had to reset passwords in the last few months. I had to reset my library password twice this week because I couldn't remember it the first time I signed in, and then I couldn't remember the new one when I signed in two days later. I got locked out of my medical record website a couple of weeks ago and had to call my doctor's office to get it reset. That little adventure took several days to rectify.

I went to get my lab work done for my chemo on Friday afternoon. I was going to do it Thursday, but I forgot the paperwork. I also forgot it Friday morning, so I stopped at home after picking up Finn, chatted with Kevin for a bit (he was working from home), got the papers from my notebook in the basement, and went upstairs to leave. Kevin called up to me to hold on, and then he brought me the papers. I finished filling my water bottle, and left for the hospital. As I parked my car, I realized I left the papers on the counter. Fortunately, the lab request was in the computer so I didn't have to go back home to get them.

I asked Kevin to tell me more examples of my chemo brain, and the first thing he said was, "I assume you wrote about forgetting your lab papers already." Nope, I sure hadn't.

Those are the more humorous stories, the ones where it's easy to laugh at myself. The frustrations come when it has real effects on my life.

Yesterday morning I left my vestments at home. I was supposed to serve as deacon at a friend's memorial Mass. I realized it when we were five minutes from the church, and there wasn't time to go home.

I forget things almost instantly, even when I'm trying.

It takes me at least twice as long to do basic tasks at work. On Thursday, I stared at my computer for two hours trying to do my progress notes. In that time, I managed to contact a parent and complete my time sheet. My time sheet was due the day before.

I just typed do instead of due on the previous sentence.

I finally understand my ADHD kids, how they can sit in a class and just not do the work. It's really not a choice. They straight up can't focus their brains to do the task. I get it now, in a way I wish I didn't.

It's hard to see all my clients in a week, even with a significantly reduced case load. I hate it. I. HATE. IT. I hate this part of me, this part where my brain stays in a fog and I can't function like I'm used to, like I want to, like I need to.

I'm learning to cope with it.

I make lists constantly--I love the Notes app on my phone, but I use good old fashioned paper as well.
I also use the reminders app, and I set timers and alarms for all kinds of things--including taking my medicines.

I ask for help. I depend (too much?) on Kevin to help me remember things I need to do.
I'm working on improving my organization methods. They work well enough for the old me, but not for my new normal.

God, I hope it isn't the new normal but just a temporary state of mind.

I also let myself get frustrated sometimes. Thursday was definitely one of those days. I vented to people who would understand, and I had a good cry at my desk at work. I ran away for a bit--I had to go to Costco that day anyway, so I left at lunchtime and did my shopping then, hoping the time away would help clear my brain so that when I got back, I could focus a bit better. It helped a little.

Tomorrow, I've got an oncology appointment. I'm going to ask about it. I'm hoping there's something we can do, because this mess is no joke. I really want to get back to being me.







I misspelled the title of the post on purpose. It amused me. 

Boob Juice

I recently learned about an online group for women diagnosed with cancer during pregnancy or while breastfeeding. It's been an amazing resource, and I'm so glad to have found it--I only wish I'd found it sooner!

A question came up this evening in the group about donor breastmilk, and as I was replying, I decided it'd be a good blog post for any other pregnant cancer mamas out there who stumble on the blog. First, a history, and then my tips.

The hardest thing for me to accept when I was first diagnosed was the realization that I wouldn't be able to breastfeed. It was something I'd really wanted to do; it was the thing I most looked forward to doing once the baby was born.

Then my sister called me one evening. She'd heard from her husband's cousin, who had a child a few months old. She'd donated breastmilk in the past, and she was willing, if we were interested, in donating milk to our baby. I'd never considered it. I loved the idea, and I talked to my doctor at my next appointment. He was a big fan--he started the donor milk bank at the hospital!

That cousin said they had another cousin who was breastfeeding and had an oversupply; she was also willing to donate. Between the two, I'd almost certainly have enough milk to keep the baby on breastmilk for six weeks.

A couple more people offered milk. The first two offered more milk that they'd pumped since I got the first batches. It looked like we'd have almost enough to get Finn through his cleft lip repair surgery, and so I decided to start putting more effort into finding milk. Thanks to another amazing moms' group I'm in, we got so much milk I had to make room in our regular freezer--it wouldn't all fit in the chest freezer.

Tips:

Store the milk at the coldest temperature your freezer can reach. A deep freezer is best, as it gets so much colder. Breast milk in a deep freezer is good for a year or more. Breast milk in a regular freezer is good for six months or more.

Store bags of milk in gallon size Ziploc* bags in the freezer. Group them by date. That makes it easier to find what you need quickly.

Every night, I'd pull out enough milk for the following day. Some of the bags weren't labeled with the amount, so it was always a bit of a guessing game, but I got pretty good at it.

I'd try to pull about equal amounts of milk from each donor. When we switched from the first person's milk to the second person's, Finn had some belly trouble (mostly gas). Once we had more milk from other donors, I started mixing the milk together. It helped his belly troubles greatly.

I'd put the bags of milk into sealed Ziploc** bags and then into a large bowl of warm water to defrost ( and change out the water when it'd get cold). Eventually I got smart and pulled the milk that I'd use the next night and put it in bags in the refrigerator to defrost over the next day. Some of the milk might still be frozen by the time I needed to make bottles, but it'd defrost much faster.

When everything was defrosted, I'd pour the bags into a quart-size mason jar and stir it. A pitcher would probably work better, but I don't have a glass one the right size. As Finn started drinking more, I needed two mason jars, which actually made it easier, as I'd just pour milk between the two jars to mix, and pouring from a half-full jar is much easier than pouring from a full jar.

I used a small funnel to pour the milk into the bottles. If I had extra milk from the previous day, I'd mark the bottle either with the ring color or with a rubber band around the bottle. It'd remind me which to use first, since the recommendation is to use milk within 24 hours of defrosting (I got to be a fair bit more lenient with that rule as Finn got older).

We use Gerber First Essentials bottles. They're about $4 for three bottles, so it's hard to beat. They have three different color rings, blue, green, and pink. I hate pink, so I always tried to buy the blue or green bottles. I couldn't always find them (for a while, I couldn't find the nine-ounce bottles anywhere!), but I still ended up with a handful of pink caps. I use a different cap each day, so I know which bottle to use first if we have any milk from the previous day.

Always try to use the oldest milk first, unless you have a very young baby and happen to have colostrum and/or very early milk available. The dietician we talked with recommended matching the milk to the age of the baby as much as possible when he was small, and at that point, we didn't have any milk that was near the six month mark, so it didn't matter. Another exception is if you have fresh milk. In that case, use the fresh first--breastmilk loses a little bit of its extra awesome benefits in freezing, so you might as well take advantage of the fresh stuff.

As to the age of the milk, I got pretty relaxed about it as time went on. Finn has had milk 14 or so months old, and he had no issues with it. One LC suggested that if Finn doesn't refuse it, it's probably fine. I'm down with that.

I had a few bags from one of our donors that were marked from when her son had a stomach bug. I used that milk when Finn had a stomach bug--I loved being able to give him that perk!

If you have the opportunity to make any suggestions to your donors, request they freeze the milk flat. It stores more compactly, which is nice for them until you're able to pick it up, and it defrosts faster. Request they always mark the bags with the date pumped and the amount in the bag (as measured from the bottle, which is more accurate than the bags, which I found to never be accurate). Offer to buy the bags, and if you can choose which ones are used, I found Lansinoh bags to leak most often, and Target bags to leak the least often. There is one other brand that I really liked, but I can't remember the name. If I find it, I'll update.

*I buy Aldi brand freezer bags. They're a little thicker, so they're less likely to rip. They're also cheap.
**Also Aldi brand freezer bags, but the quart size. Sandwich bags are not big enough.

Clinical Trial: First Cycle

I finished with my first round of pills. Fourteen days of taking four pills twice a day, half an hour after eating a meal and with plenty of water. I didn't have any significant side effects, just fatigue,  until the last two doses, when I experienced some nausea and upset stomach, with a fainting spell and a migraine thrown in for good measure. If I'm being honest, Friday was pretty miserable, and Saturday wasn't a whole lot better. Today has been fine, though. I told Kevin I was really glad I had the break when I did. I have seven days off, and I'll start the second cycle on Friday of this week.

Finn is doing amazing. He's started pulling himself up, so we lowered the crib mattress this weekend. He was so stinkin' proud of himself the first time he did it. His expression was so cute. He's been doing it more and more, and he is so tickled every time. Speaking of tickles, his laugh might be the bestest thing in the entire whole world.

For those reading to get a better idea of what to expect from capecitabine, here's the more graphic detail (that's your TMI warning):

I didn't notice much for most of the two weeks. I was a little more tired as the days went on, but it was certainly tolerable if I went to bed earlier. Thursday night however, with one dose left to take for the cycle, I was miserable. I started feeling nauseated early in the evening, about three hours before I was even due to take the meds. It wasn't too bad, just a bit of queasiness. Kevin was off donating platelets, so I just snuggled the baby longer before putting him down, and then I had a bowl of cereal to take the meds (we'd eaten dinner early so Kevin could eat before his appointment). I was in bed by nine and asleep within half an hour (kinda nice!).

I woke up around one feeling very sick to my stomach. I went into the bathroom, where I had a significant diarrheal episode. As that finished, I started feeling very clammy and lightheaded, so I leaned my head against the wall. I don't know low long I was out; it could have been two seconds or two minutes or ten minutes. I started feeling better almost immediately after coming to, but I still was a little nauseated. I cleaned up and went back to bed. I woke Kevin up and asked him to get my anti-nausea pills and a Gatorade from downstairs. He did, and I took a Zofran, drank a bottle of water, and had a bit of the Gatorade. When I woke up in the morning, I felt back to normal.

I called the clinical research nurse to let her know (I'm supposed to notify them of significant side effects, and besides, the fainting spell was pretty unnerving). She said it was likely a vasovagal response and isn't serious and is caused by a sudden drop in heart rate and blood pressure. She said she'd talk with my oncologist and someone would give me a call back.

I developed a migraine as the morning went on, which I later decided was probably caused by the Zofran (headaches are a common side effect) and the weather changes (because Maryland's weather is ridiculous). I continued to have nausea throughout the day, so I took my Compazine instead of the Zofran, even though it doesn't work quite as well. I had a few more diarrhea spells during the day, but they weren't nearly as bad as the first. By Saturday evening, I was feeling good again.

My hands are super dry again, and I've got a few spots that are cracked and bleedy. It's probably just the normal winter dryness, worsened by my increased use of hand sanitizer, so I'm trying to be super-extra-vigilant about lotioning and wash my hands instead of using sanitizer whenever possible (I usually do that anyway, but diaper changes in particular are times when I use the sanitizer. I need to find an alcohol-free version).

I have also noticed an increase in pain in the soles of my feet, in one spot in particular on my right foot. A common side effect of the capecitabine is hand-foot syndrome, which is a skin rash that can include swelling, redness, pain, and peeling of the skin on the palms of the hands and soles of the feet. I'm really hoping I just stepped on something and have a blister and that it's not the start of this.
The spot that hurts more is in on the ball of my right foot. There's a small spot in the center of a hard-ish lump there, so I'm wondering if I didn't manage to get a splinter somehow. Normally, I'd just dig it out and be done with it, but since I don't know if it's perhaps the start of the rash, I don't want to break the skin. For now, I'm just putting Aquaphor on it whenever I think about it and hoping for the best.