My daughter joined me on the trip down to Boston yesterday. I was going down for scans, and we decided to call on Camp Kesem (CK) counselors and use this camp perk called Kesem by your side. Two of her CK counselors met us at Dana Farber (DF) and took her out to brunch and to the MFA all while I was taking care of cancer stuff.

My daughter has been having a harder time with worries since September. It’s the collateral damage that comes with a cancer diagnosis. It’s so hard to see your kids struggle in general, but these worries and struggles feel so big and unfair. One thing I have learned while parenting through cancer is that normalizing their experience helps make some of those worries less big. I wanted to bring my daughter to DF to remind her that it’s not a scary place and that Boston isn’t just the place we come to for cancer care. My intention with bringing her to Boston was to ease her worries and help her feel loved. That’s the normal I want for her.

She got to hang with some amazing college students and see some of Frieda Kahlo’s works at the MFA. She got to be a kid enjoying a city. Her experience was fun and normal – she was a kid without the worries of a parent with cancer for an afternoon.

Camp Kesem is such an excellent resource for our kids dealing with a parent that has cancer. I cannot express how lucky we are to have access to so many CK camps in New England. We attend the CK associated with MIT, but there are a handful of others in our region.  I hate the reason the camps exist, but I love that they do exist and help our kids be kids and shrink those worries for some time. Indeed, CK is a magical experience!

Here’s my shameless plug: Kids get to attend CK free of charge. These visits with the counselors outside of camp are also done without any charge. I am so impressed with the college students that choose to give so much of themselves to CK kids. And I am equally impressed with how the CK kids care for one another. These bonds and friendships are special and lasting. None of it could happen though without donations. Here is comes 🙂

Help ‘Make the Magic’ for kids like my daughter (and son in years to come). Come to the gala or make a donation. If you can’t give financially, spread the word about this camp. There are locations all over the US. We all know someone dealing with cancer, and if that someone has kids, they need to know about CK. The parent doesn’t have to currently be in treatment to qualify kids for attendance. We sent my daughter last year, and this was before I had my MBC diagnosis. I know she still felt the effects of my early stage diagnosis even though it wasn’t in her face every day. She went to CK to meet other kids dealing with this same stressor. Camp is normalizing her experience. Such a gift.

Hey all! I just wanted to share some photos from our trip to Orlando a couple of weeks ago. Most of these were taken by IoH volunteers. We have so many wonderful photos and memories from that long weekend. We had two volunteers, Hope and Anna, that were instrumental in making our weekend a success. Hope and Anna made sure our kids were totally cared for when Andrew and I wanted to finish breakfast or when we were doing grown-ups talking, they made sure our park time was utilized efficiently, and they took photos along the way, just to name a few of the wonderful things they did for us. When I was tired or when my son didn’t want to go on one of the rides, our volunteers made sure that no one missed out. We all got that we needed and wanted all weekend. Such a special treat!

HUGE thank you to everyone that wrote letters to us as well. My heart was bursting! I don’t want to spoil the treat for future IoH attendees so I won’t say more, just know it was amazing.

Also, I did my first Legacy Video while in Orlando. IoH provided so many resources for us to make the video successful. I had Andrew interview me and we talked about our story. I went into this thinking we would record for 10min tops but our video ended up being 40min long! It was less difficult than I thought, but I attribute that to having the support from IoH and having my main squeeze there keeping me from getting too nervous about it.

Here ya go! This is the first time I have used this app for creating a video. Let me know if it doesn’t end up working for some reason. Xoxo

In one week we will be jet setting for Orlando. We were picked to be one of the 30 families to attend a “legacy trip” put on by an organization called Inheritance of Hope (IoH).

A legacy is basically what it sounds like. It’s a thing I get to plan and leave behind for my kids and husband. This could be in the form of letters, videos, things that I have made or set aside, etc. For this trip, I will be creating a legacy video. I am not sure how or what it will all entail yet, as I have been avoiding the hard stuff, but IoH has been great about sending us tools for making a video.

During this retreat, we will be meeting these other families that have a parent with MBC. There are kids of all ages and families from all different backgrounds. It will be nice for all of us to connect with other families like ours.

Some of the weekend will include break out sessions where we get to discuss MBC (broken out by age for kids or caregiver or patient) but also a lot of the weekend will be spent playing at The Magic Kingdom, Sea World, and Universal Studios.

IoH provides everything we could possibly need for the weekend. It’s amazing. I am thrilled that we will get to have fun as a family as well as give me the push and platform that I need to do something I really want to do but am lost on how to do it (the video).

Stay tuned for photos and a recap of the weekend when we return!

More shrinkage! This last round of scans has shown a total reduction of my sternal mass, intermammary lymph node, and lung lesions. 37% to be precise. Pretty fucking awesome! The trial now considers me to be in the category of “partial response” which is the best place I can be.

My team was SO happy to share this news with me. Everyone had smiles from ear to ear.

Going forward the best case scenario is that the lesions could keep shrinking but the more common scenario is that the change in size will plateau soon. Plateau is def a good thing. The longer I can plateau the better, as that means the meds are keeping everything in check.

I came home yesterday and celebrated. Shared a whiskey with my mom and husband and the kids toasted with their sparkling apple cider. Couldn’t be happier!

This post was hard for me to write. Actually, I have had to come back to it a few times. I started this on Monday morning, and it’s now Wednesday night.

Most days I am cool-as-a-cucumber. I am positive and hopeful! But you know that those days leading up to a scan or an infusion can make me a bit of a basket case. Just ask Andrew

It’s been hard for me to show you that I have weak moments. But I think it’s crucial for me to be real with you. Show you that treatment days aren’t the only stress inducing days. Sometimes there are moments of stress that come when I least expect it, or sometimes there are days I know are coming up that I can prepare for; either way, cancer is always there, lingering. But when I see you next, hopefully, I will have my reassuring smile, will have compartmentalized these feelings, and will have reminded myself that life still goes on all around me — that’s a beautiful thing!

So here ya go:

I stayed over in Boston last night because my scans are first thing this morning. And now I am sitting waiting for my CT scans to start. While I wait, I have to drink oral contrast, and during the scan, I will also do an IV contrast as well. For the oral contrast, I have to drink 2 bottles of contrast “water” in an hour. I learned early on that the flavors they offer taste horrible, so I always get one bottle of room temp and one bottle of cold plain water. The contrast itself is nearly flavor neutral. You’re not supposed to drink the fluid too fast or too slow; just constant sipping for an hour. CT scans are actually pretty quick and easy once you’re inside the scan room. But a few hours after the scans I don’t feel quite right. All of those contrasts make my tummy angry. Have I already mentioned all of this before? I can’t remember….N.E.Ways….

With my last scans, I knew in my heart that things were shrinking. I could feel the tumor on my sternum shrinking. And sure enough, there was significant SHRINKAGE. I went into those scans with a lot of confidence. Unfortunately today, I have to dig deep to find that confidence. I am hopeful that when I get the results on Thursday that I will have another excellent report, but I can’t help but feel very nervous this time.

This anxiety leading up to a scan or during a scan is known as scanxiety. Catchy isn’t it? Some women say they have scanxiety every time they have imaging done. I don’t. Not always. But this time I definitely do.

I think there are a few things at play that are making me feel anxious. One is that a couple of weeks ago my back started aching in a new place. It’s intermittent but it feels like the same type of ache I felt previously when I was first diagnosed. The pain is easily controlled with OTC meds yet I can’t help but wonder what’s happening there. Aches and pains pop-up and I have a strategy for dealing with these moments, but it takes some effort to self-talk my way into a positive headspace.

Another part of my anxiety today is stemming from insurance, preauthorizations, etc., etc. If something doesn’t get approved at the right time, for imaging or infusion or doctors visits or surgery, I fear what that bill will look like.

I had these scans scheduled a while ago, and there was a system delay/glitch in getting my insurance activated and my scans preauthorized. Throughout a couple of days, multiple emails and phone calls, and I am reassured that it should be okay*. But what if this one time it isn’t? A scan is a few thousand dollars, and my daily medication and infusions cost tens of thousands each month. I can’t help but ask questions like: will I ever have to make a choice to receive treatment or not because insurance will deny my preauthorization? Let’s hope not! *at the time of publishing this preauthorization went through!*

In addition to the aches and the insurance, anxiety is coming from one of my communities. I have a small community of mets friends, some local, some online; women like me living with MBC. Most are around my age, have kids, careers, love to travel, or are empowered by information, etc. Our stories overlap in so many ways.

Something I have learned from these women is that MBC isn’t one of those fast moving cancers, until it is. Just last week one of my online friends passed away. She was diagnosed a little while before me and had tried immunotherapy (a different kind). It didn’t work. She had what seemed like a small complication that landed her in the hospital, and she didn’t come home. Like me, she was hopeful, intelligent, and was seeking great care. My friend’s life and death reminded me again that there is still no cure. Immunotherapy is cutting edge, but there are still trials like the one I am in because we don’t have the answers yet. I know her story isn’t my story, but I’d be damned if it didn’t hit close to home. What’s to say this couldn’t happen to me? Jessica, you will be so very missed by me. I appreciate the light and intelligence you shared with me when I was first diagnosed. RIP.

It’s hard to write all of this out. It feels big to be so open. Embarrasing in a way. But this is just another part of cancer. It’s a part I don’t show often. I don’t feel strong or courageous, I feel like I am doing all I know how to do when I hit a roadblock: lean on those that I love and keep pressing on.

I started my 4th cycle of immunotherapy and abemaciclib yesterday. By now I am getting familiar with the ups and downs of each cycle. Documenting each cycle has been necessary for the trial, but also for monitoring things that the trial doesn’t necessarily track, but that my oncology team wants to know about.

My port was placed yesterday, and I was able to use it for my blood draw (yay for no more blown vessels!) and for my infusion too. In addition to my 4th immunotherapy infusion, I also received a Zometa infusion. This is only my second Zometa infusion. Hopefully, it goes a little better than the first. The side effects can be flu-like feelings for a few days, which is what I experienced in September. I am told that after the first one people usually tolerate the drug a bit better. So I am sticking with Zometa for now. If I get the ick again, I will switch to Xgeva, which is a monthly injection, no infusion. Xgeva has shown to be slightly better at doing what Zometa does, but its a very small significance, and I would love to avoid more shots, especially now that I have a port.

My bloodwork looked good yesterday. Part of it might be due to the fact that I had to pause the abemaciclib before my surgery and then restart it post-op. Taking a break from the meds is scary because I don’t know which drug is the one that working or if it’s the combo of all three. I am happy to be back on all of them.

Just when I thought I would have one less drug (Lupron) in my line up since I just had my ovaries removed, I found out yesterday that I am adding a new one for my thyroid.  It’s a synthetic thyroid hormone that I will take every day until we figure out the right dosage to keep my thyroid stable. I officially have a hypothyroid at this time. My oncology team predicted the trend, so this was not unexpected. Even without the bloodwork to tell me that my thyroid had finally slowed down, I could tell in how my clothes were fitting and at the scale. I was losing weight for a few weeks, then it stabilized, and now I have gained weight. Blood work obviously is the most accurate way to know what’s happening with my thyroid, but I like that I know my body well enough to know when somethings up. That’s how I found my tumors, both times.

If there is only one take away that you get from my adventures in CancerLand, it is KNOW YOUR BODY (the whole thing). Your body is beautiful, it is practically perfect, even when imperfect, and it is a vessel in which we add experiences and emotions we take from this world. When you know your body, you can advocate for yourself and move through this world with confidence.

One part of my body I don’t know much about right now is my thyroid and the mechanism of how it works. You know what that means right? I get to do RESEARCH 🙂 I know I am a nerd.

Thank you to all of the folks that reached out and told me about their experience with thyroid issues. You all have given me a lot of hope that it can be managed with regular monitoring.

In addition to being a nerd, I am fully embracing the post-menopausal old lady inside of me. The first item of business in my menopausal life? A pillbox. I want one that can hold 7 days worth of meds, AM/PM. I don’t want it to be plastic or lack beautiful design. I headed over to Etsy, and I found this gem. I like it!

 

I have been wrestling with some significant feelings around getting a port again. In spite of what I tell myself that “feelings are not facts” I have been finding myself caught up in my emotions around a port rather than the usefulness of it.

I did IV chemo during my first round with breast cancer; thus it was not my first line of treatment for this diagnosis. Some MBC patients have chemo right off the bat, but not me. I was glad to not go through that again right away. And as long as the drugs I am on keep working then IV chemo will stay far away from me. For me, I equate chemo to moving into the last of my arsenal medications. This very well could be wrong — it is wrong. I could do chemo for my second line, but that doesn’t mean it’s all we have left. See the inherent fallacy in my thinking there? Chemo isn’t even in the cards for me right now…so why should getting a port make me think about this?

Ports are great for people that have veins like me, or for those that have regular infusions or scans with IV contrast. They are usually placed in the chest area, but I believe you can get them other places. My last one was in my right upper breast area. The PA that placed mine and took it out was excellent. I loved my port. It makes me feel a little robotic, which I don’t like. But it also made my life SO much more comfortable when getting treatment, which I did like.

I had my previous port for one year. I always said that it was my security blanket because as long as I had it (post-chemo), nothing bad could happen. I shouldn’t have said that because 1.3 years later I received my stage iv diagnosis. I am not a superstitious person either — silly illogical superstition. What happened was just bad luck.

As you saw in one of my previous posts, getting an IV is quite tricky for me. It’s fucking painful when I’m a pincushion, and then I am left with nasty bruises for weeks. Needless to say, I am getting a port placed on Thursday morning. This is technically another surgery, but minor. Some sedation (twilight sleep) and Zofran (for nausea) and I should be good to go.

So, why am I am I having such a hard time accepting a port this time? Honestly, it feels like I am saying yes to the beginning of the end. I am not getting IV chemo right now, but it feels like I am saying yes that it will be in my future. And if I am saying yes to eventual chemotherapy, then I am saying yes to the fact that my current treatment might not work forever. It’s a lame cascade of nonsensical sensemaking.

Once the port is in place, the surgical staff will leave it “accessed” because Thursday is also my infusion day (round 4). Each time I use my port it is called having it accessed. An RN or MD can access my port for blood draws or medication administration. Accessing it means they put this fancy needle in the port which is hooked up to a specific blood vessel and blood comes out easily, and drugs go in smoothly. There are no opportunities for multiple sticks or blown veins because the port lumen is always attached to a blood vessel.

After the placement, the area where the port is will be a little tender for a week or so as I am healing. Glad it isn’t bathing suit season yet! No one wants to see all of the fresh incisions I have going on right now.

My Christmas Eve oophorectomy surgery went well. I was in and out of the surgical suite in 1.5hrs, had a short observation time afterward, and then home. I took it easy that day – laid in bed most of the afternoon, watched the kids Christmas pageant via FaceTime, and then went to my sister-and-brother-in-law’s home for dinner. I even managed to stay up late enough to help out with last min Christmas “things.”

Today I am sore. It’s not entirely debilitatingly, but sore and tender. I have three incisions: belly button, and one on each hip. I was sealed up with surgical glue, so no bandages to see; It looks pretty good so far. While in this surgery the surgical team pumped my abdomen full of air to make sure they had lots of room to see. I have been trying to move more today to get some of the air out. The air makes me feel puffy and uncomfortable.

All in all, I really can’t complain. The pain is tolerable, and I am confident this surgery was the right thing for me to do. Removing my ovaries removes the biggest producer of estrogen in my body. That means less food for my estrogen hungry cancer. It also means I am no longer in need of a monthly Lupron shot to shut down my ovaries. Now I am in permanent, surgically induced menopause. Yay for being 60! No, but seriously, yay for hopefully more time on this earth.

There is one more thing that everyone is curious about, which is my emotional state before and after surgery. With confidence, I can say I have been conflicted, and it’s complicated. Andrew can attest that I cried a lot of tears before surgery, in the car ride down to Boston. I was quite anxious but kept telling myself this was right. The morning of the surgery I was trying so hard not to let that anxiety creep in. Andrew showed me pictures of our kids, which definitely helped me stay focused on my goal.

Anesthesia makes me sick if not given other meds to keep nausea and vomiting at bay. If you know me at all, you know I hate throwing up. It’s the shittiest feeling. I was given a few different drugs during the procedure, and they worked. I didn’t get sick. That was a huge relief!

Post-operatively I am hanging in there. I don’t feel like less of a woman or anything. More than anything losing any part of my body to this disease is maddening. I have a lopsided breast from a lumpectomy in 2016 and now no ovaries or Fallopian tubes. I will keep doing whatever I need to do to be here as long as I can, but is it really fair that a 34-year-old woman has to deal with this? This is not a woe is me statement. It’s just my reality. And really, things could be worse!

I’ll keep healing every day. Hopefully no major surgeries for a long while!!

But first, an aside — Alice goes to Wonderland, which is a curious place, and she finds a bottle that says “drink me,” and she thinks to herself “If one drinks much from a bottle marked ‘Poison,’ it is certain to disagree with one, sooner or later.” But this bottle wasn’t marked poison so she drank and she shrunk.

Infusion day happened the first week of December, and it was good news all around that week.

I had scans on Sunday that week, a biopsy on Tuesday, and on Thursday I had a day of appointments.

Since starting treatment, the mass on my sternum has changed. It has shrunk a lot and today after three cycles of treatment I can barely feel it myself. But what I feel isn’t empirical.

My scans show SHRINKAGE (never been so happy to use that word 😋)! That’s empirical data! The mass on my sternum has reduced in size by 26%. All of the spots in my lungs are also smaller. Bones are reported to have sclerosis which means there’s a change in density. Because everything else is changing for the smaller, the doctors assume that this means the change in density is in a good direction. It could mean more metastatic lesions, but that’s not likely with the shrinking of anything else. Yippee!!! Right now my disease is considered stable in the medical world. I LOVE stable. Stable is so good. Stable means I get to keep doing what I am doing, and hopefully, I stay stable for a good long while.

Infusion days are often long and stressful. We drive down to Boston which can take 1.5-2hrs and then it’s a cascade of appointments. First is always bloodwork. Dana Farber has a rule now that they cannot stick a patient more than 4 times. This is stressful for someone that has tiny veins and the good ones I have roll. I am not an easy stick. I stress about getting bloodwork and an IV every time because I don’t want to be turned away. I cannot get an infusion if they can’t check my labs. This particular trip took three tries. I have the bruises to prove it.

After labs, I usually meet with my social worker. She’s excellent and is working with me now on legacy type stuff. After meeting with my social worker, I meet with my oncology team.

I have a powerhouse of women by my side. I meet with Lindsay, my nurse practitioner, or Dr. Tolaney, my oncologist, and with Morgan, my research nurse. They ask me questions about how I am feeling; fill me in on what’s happening with scans or bloodwork; let me know what’s coming up next for the trial; help me deal with side effects; listen to my heart and lungs; let me ask questions; and so on.

I was anxious during this visit because I wanted to hear all about my scans and my bloodwork would determine if I was going to be infused that day or not. Super great news on my scans. And then my bloodwork showed that my absolute neutrophils (ANC) were high enough to get treatment! The last two ANCs were borderline too low for me to get treatment, so I was anxious going into this appointment, hoping and praying they would be higher than before. And they were, and I was granted treatment.

Infusion is done in the same suite that I had chemo in. It’s large, and I usually get a nice window seat with a view of Boston. They bring me warm blankets and snacks. Infusion nurses are the BEST! This time I even received chair-side acupuncture.

With chair-side acupuncture, they target places in your ears that have effects on fatigue, nausea/GI issues, anxiety, and depression. I can’t wait to try it again because I definitely felt mild relief from some of these side effects.

All things considered, Round 2-3 has been quite successful! I have surgery next week (Christmas Eve) to have my ovaries and fallopian tubes removed. It’s a day surgery so we should be back in time to see the little babes perform in their Christmas Pageant. Actually, more realistically, I will be at home and in bed and Andrew will FaceTime me into the performance.

Merry Christmas everyone!

Tomorrow is a day for Thanksgiving. But I am grateful for so many things every day. So a day early I want to share what’s on my heart at this moment:

Thank you, Andrew, for being my best friend, partner, father to our kids, loving husband, logical manager, and financial provider for our family. I am always grateful to have you by my side. Thank you for keeping me warm too, in this crazy cold months.

Thank you to my kids for reminding me that life is precious and fun. I really enjoy playing games with you and hearing your knock-knock jokes.

Thank you to Rebecca, Stephen, Anne, Kurt, Shira, Dan, Whitney, Angie, Catherine, Dave, Erin Marie, Misty, and Guy for watching my kids in one capacity or another in the last few weeks. Knowing they are in loving hands makes it easier for me to do what I need to do.

Thank you for all of those that have sent me cards/emails/texts and gifts. I read your words and hold your gifts and know I am loved. Thank you for those that have made food for our family. On treatment weeks the meal train has been so helpful. Also, my freezer is full and organized (thank you EM and Misty) which makes the busy weeks outside of treatment even easier for me. I am grateful to have really wonderful cooks surrounding my family. Food is love.

Thank you to those that have given to our GoFundMe or sent funds to us in other ways. I am overwhelmed by your generosity. Truly, I cry every time I look at it. These gifts are a blessing that will allow us to make lots of great memories while I am still feeling good.

All of you have given us so much in the ways that you can give. I am grateful for such generous friends and family. I am so blessed by all of you. Thank you community for loving me and my family.

I also am grateful for my life. This life is good. Curious at times, but good. What would life be like without some interesting twists and turns? Keeping my head up!