Saturday, April 30, 2016

Last A-C Chemo!

My last A-C chemo was yesterday, and I'm quite excited to be done with it. Mostly, I'm excited that around 3:30 this afternoon I will take my last shot of Neulasta (God willing and the creek don't rise, my last ever ever ever).
Kevin's mother came with me again, despite still feeling worn out from a bug earlier in the week. I am so grateful to her and constantly count my blessings for the amazing family I married into.
I saw the oncologist before my infusion, and because of the way the scheduling worked out, it was the first time I'd seen him since I started chemo. I've talked to him a couple of times, but it was my first actual appointment with him. I had my list of questions ready, and we got through them pretty quickly. The longest discussion was about poop. Now, if you know me very well at all, you know I kinda sorta like to talk about poop. And if you read a certain recent post, you probably wish you'd fortified your TMI shield before doing so. Here's your new warning: TMI ahead. Feel free to skip the next paragraph.

Anyway, in our discussion about side effects, obviously this came up, and both Dr. D and the new nurse practitioner (I'm pretty sure that's what he said, but she may be a PA) gave several suggestions for dealing with the constipation that gets so much worse after infusions. They suggested Senokot-S rather than Colace, which is probably the most gentle and not going to do much for me at this point. Senokot-S has Colace in it, but the Seno is a natural laxative that tends to work really well for folks. I do need to clear it with my OB first, and in the meantime, they said to try Dulcolax. If I can't go for a couple of days, then I should use an enema. They both chuckled at my expression when the suggestion was made, but then explained how helpful it can be, so I guess I'll just cross my fingers it doesn't become necessary. So far, I've been able to poop twice, and though they weren't comfortable, it wasn't the agony I experienced after my last infusion.

OK, you can come back now. Poop talk is over. I asked my most pressing questions: when would I stop the Taxol before the baby, when would I restart it, and is breastfeeding still going to be an option?

Barring any complications, I'll be on the Taxol starting May 13 (yes it's a Friday, but Friday the 13th tends to be a good day for me. I met Kevin on a Friday the 13th, after all) and get in six infusions, taking me up to June 17 (the last day of school for the year). I'm scheduled to be induced one week later, on June 24. I'll get that day off, but I'll restart on July 1 (my original due date). He said that even if I end up needing a c-section, if there are no complications with it, I can still restart on the 1st. I was kind of hoping for a little more time off, but I also want to be done with everything as soon as possible, so I'll take it.

As for breastfeeding, he said he wants to do more research before giving me an answer. There isn't a lot of information available about Taxol in pregnancy, since ethical guidelines typically prohibit studies on pregnant women and babies. However, he said that Taxol can only be given via IV since the stomach/intestines would break it down and render it useless if given orally, so even if it were to pass into breast milk, he isn't sure that it would be a problem. I told him about the incredibly generous offer from my sister's husband's cousin, and explained that even if I could just have that one week, I'd be thrilled. Even still, I asked him for the safe answer and not the one I wanted to hear. They'll get back to me with whatever they decide (and probably with two or three articles to support it, if previous discussions are any indication).

He gave me the full packet on genetics testing and said to give them a call to get scheduled. The test itself takes a few weeks, but I'll also meet with a genetics counselor to talk about what it all means (I'm surprised every time I hear that people often want to skip this step--why wouldn't you want someone who understands it all to help explain it?!). The test can be done via blood sample or even a cheek swab; they just need some DNA and as much family history as I can provide (that helps them figure out which panels to run to give me the most relevant information).

Dr. D also did a physical exam, and he couldn't even feel the lump at first. As he was checking, he said, "I like what I can't feel!" Me too, Dr. D., me too. I cannot express how exciting it is to actually watch the chemo at work to shrink this tumor to where we can hardly feel it--and this was after only three out of sixteen total infusions, with surgery and radiation still to come. This stupid Titmonster has no hope.

Appointment over, it was time for my infusion. I forgot completely about the Emla cream, which I'm supposed to put over the port before leaving for infusions to numb the area. I knew already many people don't bother with it, and some people aren't even given the prescription unless they know to ask for it, so I wasn't too worried. I could feel the stick as she accessed the port, and there was a little stinging for about 15 minutes, which the nurse said was likely just the antiseptic they use over the area. It wasn't bothersome, so I doubt I'll worry about the cream in the future. One less chemical to subject my body to, right? (I mean, that cream is probably the least toxic of anything I put in my body yesterday, peach slush included, but still).

Right after I got hooked up and started my pre-meds, the social worker came by to check how I was doing and let me know they'd gotten our financial aid application and would have a decision for us in a few weeks. She also wanted to introduce me to a volunteer from the Ulman Cancer Fund for Young Adults. The volunteer was diagnosed with breast cancer when her youngest daughter was six months old, so I was able to ask her about some of my concerns, particularly around what I'd be up for and able to do at various points in treatment, especially after surgery. She told me about the events they have regularly and what other help they can provide, and she promised to send me more information. I'm interested in it; I've found I appreciate even online support groups more than I would have predicted, so an in-person one might be really nice. She said they even offer free family retreats for families dealing with cancer. I might could use a beach vacation sometime in the future, and I've always loved retreats.

A cancer center volunteer came by with his tray of sandwiches, so I got to have a yummy chicken salad sandwich instead of the PBJ I'd asked Kevin to make for me while running around before his mom came to pick me up. That man cracks me up. He's been there every time I have, and he is as nice as can be, and he'll talk to you forever if you want. He was delighted last time to have an egg salad sandwich for me last time when I told him I'd forgotten my lunch bag on the counter.
The navigator came by right after him to see how I was doing and have me fill out the stress and nutrition surveys, but she didn't stay long since I'd just seen the social worker a few minutes before. I love how they wrap patients in care at GBMC. I don't know if it's as thorough or convenient at other places, but I sure appreciate it here.

Visits complete, I did a few overdue progress notes for work. It was difficult to concentrate, particularly knowing the deck of Phase 10 cards was in my bag right next to me, so after I got a few done, I put away my computer and started shuffling just as the last bag of pre-meds finished and the nurse came back to start my Cytoxan. She offered me lemon drops to help with the sinus burning I always experience, and they did help. They also last a lot longer than the Life Savers I've used the last three times, so that's nice. It still burned quite a bit more than before, so I asked if the drip could be slowed down any to see if it'd make a difference, and it did.

She also sat down with me to talk about Taxol, since I'm to start that next time. She said the pharmacist had balked a little at it, since it's listed as a category D during pregnancy, meaning there has been documented harm to a fetus, though potential benefits may still outweigh risks. She said they wanted to do some more research into it and would talk with Dr. D about it as well. I trust Dr. D's judgement, and I know how thorough he is in making decisions, so I am not too concerned. Actually, the pharmacist's reaction only increases my confidence, since I know everyone involved in my care is so thorough.

The second and last med for the day was the Adriamycin; I have had it first during my other infusions, but because of the timing with my nurse's other patients, it made more sense to have it last this time. I kept my mouth as cold as I could, and so far I haven't had any issues with mouth sores (yay!). She flushed my line and port, took everything out, and set me free.

When I got home, I took a little nap, then Kevin and I went to dinner at The Barn with friends Mike and Kimmy. It was, as always, nice to see them, and that restaurant makes a mean french dip.

Today's plans include a trip to IKEA to get the baby's crib! Kevin has a baseball game tonight, so I think I'll try to force myself to finish those progress notes and maybe start on thank you notes from last weekend's shower. And I'll probably take a nap, because it's an overcast Saturday, and why not?

Thursday, April 28, 2016

The Titmonster

So I googled Titmonster. This is my current favorite.
Further clicking indicated these may be eyeballs, but...nope. He is definitely a titmonster.

Wednesday, April 27, 2016


The baby was quiet today; I only felt a couple of kicks all day long. It was a huge relief to hear that strong heartbeat at our OB appointment this afternoon. Baby must just be as tired as me today. I got a lot of questions about labor and delivery answered today, things like what we can bring (essential oils with diffuser and birthing ball are both okay), and how often I'll be monitored (constantly; between the diabetes and the Pitocin to induce, intermittent monitoring isn't an option). I won't be able to eat, so they'll maintain my blood sugar via IV (boo). They'll check for the cleft immediately, and as long as the baby is healthy, we'll be able to hold the baby right away. And, most excitingly, my doctor is completely on board and encourages the use of donated breast milk--and someone has already made the incredibly generous offer to us! So now, even though I won't be able to breastfeed, the baby will still receive breast milk.

I move to weekly appointments now. We have another ultrasound in two weeks, and I'll start twice-weekly monitoring on May 19. It's going to feel like I live at GBMC by the end of this year.

After my OB appointment, I had my pre-chemo labs drawn, and yay! the phlebotomist got my vein on the first try and didn't have to wiggle the needle around in my arm! I then walked over to the infusion center to drop off the forms for my oncologist for FMLA and short term disability. Later on, we treated ourselves to frozen yogurt for dessert. On the drive home, Kevin asked me if I'd ever noticed that the acronym FMLA includes the acronym FML. I hadn't, but it amused me.

Tuesday, April 26, 2016

Chemo Day 3, Baby Shower, and More

It's been a busy few weeks.

We had our growth ultrasound on the 13th, and baby is doing fantastic. He or she measured in the 60th percentile at 3 pounds. They were able to confirm the cleft lip, despite the baby not wanting to face the ultrasound probe, but it still looks on the small side. Overall, Dr. K was pleed, and we were thrilled to see our baby again.

The third round of chemo was a lot more difficult for me, but I started feeling like myself again by Thursday. The morning after, Saturday, I was feeling quite good, so Kevin and I decided to take advantage of our new aquarium membership for the afternoon. To avoid paying the astronomical parking rates around the Inner Harbor, we drove to the closest light rail station and rode downtown. First, however, we stopped at a nearby REI so I could pick up a few bandanas. Next to the bandanas was product called a Buff, which is a stretchy tube of fabric that can be worn a dozen different ways, and one of the designs was covered in maps (I love maps). I said to Kevin that I'd splurge on one if only they had a map of my (North Carolina) mountains, but alas, they were all a good bit further north. As I started to move away, my eye caught something printed on the next one on the rack. I looked closer, and sure enough, there was Pisgah National Forest and Mt. Mitchell. I wore it the rest of the day...and several times since.

We headed on down to the aquarium and had a great time, even if we didn't get the up close and personal dolphin experience of last time. Afterwards, we went to Pratt Street Ale House for dinner, making it a very lovely date day.

The downside of being out all day meant that I didn't take the Neulasta until late Saturday evening, and so the effects from it stuck around well into Wednesday. I was achy and completely exhausted for several days, and while the achyness has dissipated, the exhaustion seems to want to stick it out for the long haul. I suppose pregnancy isn't helping that one.

Another thing that pregnancy isn't helping (TMI ALERT) is my ability to poop. I've been a master pooper my whole life, and that has gone out the window since I've been pregnant. I developed hemorrhoids a couple months ago, but it'd been manageable until last week. Pregnancy causes constipation. Chemo causes constipation. Pregnancy + Constipation = Ouch. Major ouch. I finally called my OB for some help on Tuesday, and after a ridiculous rigamarole with CVS (I'm finding a new pharmacy after this latest nonsense), I picked up a prescription cream Wednesday afternoon. With the help of lots of fiber, way more medication than I'd prefer to take, many warm baths, and some other new rituals, I'm feeling much better, though the unpleasantness remains. I'm upping my preventative techniques already to prepare for my final round of AC, which will happen this Friday.

On Friday afternoon, I finally called the Cleft Team at GBMC to schedule our first appointment. The coordinator reminded me why I love GBMC so much: after I said who I was and why I was calling, she said she'd be happy to schedule me, but first, how was I doing with all of this? I told her we were doing quite well with it, that my husband had from the get-go had really taken it in stride and that after a couple of days I was right there with him. I then half-laughed and explained that it became even less of a worry or issue for us about seven weeks ago, when I was diagnosed with breast cancer.
She said something along the lines of 'oh goodness!' and then told me that at the risk of sharing too much, she was a 10 year survivor and had in fact just seen her oncologist that morning. We talked a few minutes about it, and it turns out she had the same surgeon and oncologist as me, and we both are huge fans of GBMC and all its people.

She got us scheduled for our first visit, the prenatal consult, on the next Cleft Team day, which will be the first week of June. Before that, we'll schedule with the surgeon to meet when we can have more time--she said that appointment is usually about 45 minutes.

The surgeon will come to examine the baby while we're still in the hospital, and we'll also have a feeding evaluation by the speech therapist before discharge. The baby will meet the cleft team for the first time in August, during a three-ish hour long appointment. We'll meet with all of the specialists that day (there are over a dozen), and they'll each do their own evaluation. I expect that day will be overwhelming and exhausting, but informative.

My mom drove up on Friday to help us out and to attend the baby shower that Kevin's mother and sister hosted for Kevin and me on Sunday. She spent lots of time on Saturday enjoying her 'yard therapy' and giving our yard a much needed clearing. Kevin tackled the front yard with our dinky little push mower from the rowhouse. We have been holding off on purchasing one as long as we could, and it worked out in our favor: Kevin's uncle and aunt are moving out of state in a few weeks and they offered us their gas mower. We may try to borrow a proper mower from a neighbor just to get the back and side yards done, because that push mower is a bear, and our yard is large, and it's already overgrown, which the mower really doesn't like.

The shower on Sunday was so nice. It was held at a local restaurant, with delicious breakfast/brunch foods, and good family and friends. We have lots of very generous family and friends, and our kid is going to be so well loved and cared for. I had debated whether to wear my wig or just a scarf, and I finally decided to just go with a scarf. It's far more comfortable on my head than the wig, and really, I just don't care about being bald, so why bother with the wig? I left the scarf on until just our immediate family was left, but then even that came off.

We picked out our paint color for the nursery Sunday evening, and Mom got started on it on Monday while Kevin and I were at work. We are very happy with the color, a pretty, warm green that we color matched from the baby's bedding. I was off today (Tuesday), since it's election day and most schools are polling places, so Mom and I did some more yard work (Mom did the bulk; I haven't had much stamina lately, and that was particularly true today), I voted, and then we finished up the painting, making sure to save some trim work for Kevin once he got home. It's done, and it looks great, and now I want to go pick up the crib and get everything put together.

We have an OB appointment tomorrow after work, and I'll have my pre-chemo blood work done while I'm at the hospital. No ultrasound this week, but we will get another in two weeks.

As I mentioned, my last round of the A-C chemo is Friday, and I'm excited to be nearly done with it. Mostly I'm excited to be finished with the Neulasta. I'll start Taxol two weeks after that, and it'll be weekly. I've got lots of questions for my oncologist when I see him on Friday; I've seen the oncology PA for the past two visits, as Dr. D hasn't been in the office when I've come in for my previous infusions. My most pressing questions are when I'll pause the Taxol before the baby and when I'll resume it after baby comes, and whether or not I'll be able to breastfeed before I restart. I'm hoping and praying the answer will be yes, but I'm trying to prepare myself for the distinct possibility that it'll be a no. Ultimately, I want what is best for baby, and if my breast milk might be contaminated with the Taxol, that won't be best. Still, cross your fingers for me?

Monday, April 25, 2016

Reason Number 4

Email to school from the school nurse, April 25, 2016 at 10:28 AM

We seem to be having increased incidence of lice. I have been checking several students this morning and have several more to check. If you could please try to limit other student visits to the nurse to urgent issues only it would be much appreciated.

Email from me to school nurse, April 25, 2016 at 10:31 AM

Reason #4 to be grateful for having no hair.

Thursday, April 7, 2016

Are you wearing a wig?!

My first kid found out today. I went to pick her up from class, and she asked, right there in the classroom. I said no, but she persisted, so I gave her a look and asked her to hush until we were outside. She did not, and asked twice more before I got her into the hall. A couple of kids were passing by in the hall and again she asked me, "Do you have cancer?". I said, firmly this time, "Please stop talking about it in the hallway; we can talk about it as soon as we get to my office". She gave me a look then, like she was starting to understand, and she didn't say anything until we got to my office.
There I told her, "Yes, it is a wig, and yes, I do have cancer". She wanted to know if I lost my hair already, wanted to see it, said the wig looked weird on me because I never wear my hair down (and she likes it better when I have a ponytail, because I look 'normal').

She asked if the baby was okay, and if the baby would have cancer. I explained that the baby wasn't going to be affected at all, that the treatments I would have before the baby comes are all safe for the baby. She wanted to know if I'd be at school next year, and I said yes. And then, apparently satisfied, she wanted to show me a video on her phone.

Immediately after she left the office, I asked my coworker if the wig looked like a wig or if it was crooked or what. She said no, and we've decided my student is just more observant than most people. I asked her to pretty please tell me if ever the wig is crooked or looks weird, because I think that would be more embarrassing than just going bald.

I'm kind of looking forward to my kids all knowing so that I can just wear a cap or scarf. This wig, while I think it does look natural enough, isn't very comfortable and it's always in my face. I so often wore a ponytail in the past because I don't like my hair in my face at all--and while the wig is long enough to pull back, it doesn't look natural when I do. It gets a little Deep South Big Hair on me when I do that. I think we'll all agree that I can't pull off that look.

Wednesday, April 6, 2016

Day 18

My hair started falling out yesterday, day 18. I noticed it first at work, when I'd taken off my wig for a bit between clients to cool off and relieve some of the itching. Just before I put it back on, I noticed my sweater was covered in hair--it looked like I'd been cuddling one of the cats, only it was my hair and not theirs. I brushed it off, commented to my coworker about it, said I thought maybe it was starting, and then put my wig back on and went to get my next client.

I took the wig off the moment I walked in my door at home, and when I ran my hands over my head, a lot more hair was stuck to them. My hair looked matted also, like really bad bedhead. I couldn't do anything about it then, as we had an appointment for our taxes, so I just stuck on one of the super soft caps that my mom's cousin sent to me and headed back out the door. It was the first time I've worn one of the caps out and about. It was comfortable, but I was really hot in that stuffy office.

We got home, and I asked Kevin to be in charge of dinner; I was feeling better in general, but I was exhausted and feeling kind of crappy again. I thought I might do some of my notes or treatment plans for work, but I didn't have the mental energy for it, so I chatted with my sister on the phone instead.
After dinner, I took a bath, and while in the tub, I stuck my head underwater several times and rubbed at my hair. Each time, I came away with more hair than I could have imagined. I turned on the shower afterwards to rinse it away, and while washing what was left of my hair came away with more and more and more. I finally opened the curtain to look in the mirror and saw the bald patches on my temples.

It hit me in a very different way that I have cancer. Until that moment, I had just done some medical things, received some medication that made me feel crappy, whatever. Seeing the patchy bald spots on my head made me realize I now look like I have cancer. That was more disturbing than actually losing my hair (maybe that's because I'd already had it cut so short).

Kevin and I decided it would be better to shave it down as much as possible. It would, we hoped, look a little less disturbing and also be less itchy in the morning when it came time to put the wig back on. After taking a couple of pictures, he dug out his clippers, and later his beard trimmer, when the clippers wouldn't hold a charge very well, and he went to work in the middle of the kitchen (it was way too cold to do it outside). It took maybe 40 minutes to get it all shorn.

We took a few more pictures afterwards, and by then I was beyond ready for bed. I did want to call my parents to tell them, so I talked to my mom for a bit first. I lotioned the fool out of my scalp, put on that soft cap again, and then Kevin read some Harry Potter to me until I was ready to sleep.
When I woke up during the night, I noticed that if I was laying in such a way that the stubble on my head caught in the cap and pulled the skin, it did not feel pleasant. It was easy enough to adjust positions though, and I slept fairly well.

Despite the cap, and then the wig, I couldn't get warm this morning until halfway to school, with the heat blasting and seatwarmers and gloves on. Now that I'm in my office, of course, I'm plenty warm and considering turning on my desk fan. I can't decide if these temperature swings are from pregnancy or chemo or both. Probably both. Either way, apologies to my officemates, because I have best access to the temperature controls.

Sunday, April 3, 2016

Chemo, Day Two

Friday was my second round of chemo. Two of my sisters, Caren and Kathleen, plus their kids were in town to visit since we were all on spring break. Caren came with me for the chemo.

We had to wait longer this time--over half an hour, and by the time I decided I'd ask if they had an update, the nurse was on her way to call me back. We got another corner room, and the chair faced the window this time, so I could see outside more easily.

My nurse this time was another Lisa, and she was also excellent. She asked about all my symptoms over the past two weeks, told me my port incision looks good (even though it still stings on occasion), got me all hooked up for the IV, and started my premeds. I got a toasty, oven-warmed blanket and some apple juice and snacks (I'd forgotten how delicious Lorna Doone shortbread cookies are), and settled in. Caren and I kept ourselves entertained despite forgetting to bring Phase 10 cards while we waited for all the meds to infuse and kick in.

I've been really good about drinking my water, especially on the day of treatment, so I needed approximately eleventy trips to the bathroom while we were there. I got my Kool-Aid potion first; that's the Adriamycin, or Red Devil, and hopefully did a better job keeping my mouth cold during it. Last time, I had some unpleasant mouth sores for several days, and I know I didn't get it nearly as bad as many people. Apparently, keeping your mouth cold during the infusion and avoiding anything very hot for 24 hours helps prevent them.

Next was the Cytoxan, which is done through a slow drip. I remembered something weird happened during that one and that sucking on Life Savers helped. I couldn't remember quite what it was and I thought maybe it was a weird taste in my mouth. After about 20 minutes, I remembered when my sinuses started burning throughout my whole head. I'd been sucking on the candy, but when I hadn't felt anything for a while, I stopped. A minute or two later, it started. The candy kept it tolerable, and it started easing off almost immediately once I'd finished the medicine. Within 10 minutes, it was completely gone. After another IV flush, we were free to leave.

In the parking garage, we came across a small snake in the middle of the road. Caren freaked out; I looked for something I could use to scoop him up to move him out of danger. Alas, there was nothing, so I tried to urge him out of the way while Caren took a couple pictures to show what turned out to be the scariest part of the day for Caren. I was amused watching him hiss and flick his tongue at us.

We headed back home, where Kathleen and the kiddos were hanging out waiting for us. I'd talked up Matthew's Pizza enough that everyone was on board for a late lunch. I'm telling you, that crab pizza is the absolute best. Back home again, Kevin and I and the girls played in the yard with the dog while Caren and Kathleen packed up to head back home to North Carolina. I think Harper loved chasing Val as much as Val loved being chased.

They all left (sad face) just as the rain hit, so I Xanaxed the dog while Kevin went to pick up some Big Bad Wolf barbecue (best barbecue that I've ever had that my dad didn't make) for dinner. I'd been fighting a headache on and off for a couple of hours, and it was getting worse, so we took it easy for the evening and I went to bed early.

I didn't sleep well that night; I was up every 45-60 minutes to pee (remember how earlier I was all proud of how much water I drank?), but at least I could fall back to sleep fairly easily each time. I was up for good before 8:00, and the headache hadn't improved. It stayed just shy of the point where I was ready to give in and take some Advil (approved by my OB), but it left me feeling lethargic all day. I managed to make it to the grocery store, where my blood sugar bottomed out just as I was leaving, so I had an unplanned lunch at the Wendy's in the same shopping center (nowhere near as good as the places I'd eaten the rest of the week).

I laid down for a while when I got home while I waited for the Neulasta shot to warm up before injecting myself. It was easier this time, and didn't sting at all.

Kevin and I headed to the YMCA by our house when I got back to redeem the gift membership that was donated to the cancer center. The folks we dealt with were super helpful, especially the membership director of the branch that initially donated it--they're located about an hour from us in Ellicott City, but she set me up remotely so all we had to do was go in and complete the paperwork at the branch by our house instead of making the trek to Ellicott City. I'm really looking forward to being able to be in the pool again, as well as take advantage of the yoga classes.

I made baked spaghetti for dinner and finally gave in to my headache and took a couple Advil. I spent a couple hours working on FSA reimbursements while we watched some Archer and tried to keep the dog calm from the nasty and unexpected thunderstorm. I shouldn't have fought taking the Advil for so long. I felt so much better afterwards. I don't seem to learn this lesson, ever.

Sunday has been crap. I slept much better, but I have had no energy and just felt crummy all day. I told Kevin it felt like I was getting sick. He said, "Or, you know, like you have cancer?" So yeah. That. I have spent more time in bed than out, though I've been up for a few hours now, took a nice bath and mostly just camped out on the couch with Sheetsy. Kevin left just before 2pm to head to southern Maryland to watch WrestleMania with friends. I'm super jealous that he gets to meet our friends' recently adopted son before I do, but I just wasn't up for it, particularly since I have to go back to work tomorrow. So I'll get my fill of HGTV and go to bed early. Friends from church are bring dinner by in a bit, and I've already warned them I'll be in my pjs and not very good company.