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.