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!