It’s been a while since my last update. We’ve moved in, mostly unpacked, and I’ve had my first round of the new chemo. Which promptly kicked my ass, on top of the issues with the ascites.

I’ve had to have my abdomen drained every week, and this chemo has made me the sickest that I’ve been, basically couch-bound.

I wrote this Instagram post as a thank you to Brian and all caregivers:

I’m feeling better, but I'm still struggling a bit and taking things day to day.

I have 10 days until my next chemo, and to say I’m nervous about this, would be an understatement. I don’t want to feel bad again. Of course, I will feel bad again in some way. So there’s some acceptance as usual. I’m really tired of the constant acceptance required of having cancer.

Cancer isn’t just about the physical body. Cancer is emotional and existential as well as physically demanding. Cancer tests your relationships and expectations of people. Cancer tests your needs and how you express them. Cancer breaks you down as well as the people around you.

Cancer steals from you and forces you into hard and uncomfortable choices.

Since we’ve moved back we’ve gotten to spend time with some really loving people. Of course, this feels wonderful, but overwhelming as well.

If I owe you an email or text from the last few weeks, these are the reasons why. I just haven’t been able to, but I still love you and appreciate you reaching out.

Time for a morning nap.

xo

The new apartment felt good to be in, so I’m thinking when we have all of our stuff it will feel like home pretty quickly. Unpacking and organizing might be a bit of a slower process than I usually do, but that’s okay. We’ll just call it mindful unpacking instead of cancermakeseverythinghard.

I went to Champalimaud in the morning, had the fastest bloodwork appointment ever, had a snack, and then went to see a friend until my next appointment. Things went a bit off the rails because the doctor was running quite late.

When I did finally get to see her, she was kind and focused on me. The doctor here in Faro is also kind and focused on me, and getting this vibe from the new doctor was a relief. I had met with her once before and felt the same thing. We talked about how I’ve been feeling, the fact that I now have a new problem, which is called ascites, which is a condition in which fluid collects in spaces within your abdomen. It’s caused by the tumors in my liver which are creating the fluid and leaking it out into my abdomen, and there’s too much to be absorbed, so it collects and causes your belly to be distended. It’s very uncomfortable and tight-feeling.

As per the CT scan, the ascites was confirmed, as well as progression in my liver, hence this new problem. So onto a new treatment. Which can’t be oral chemo because of what is going on in my liver - it interferes with the ability of my body to absorb and process the oral medications.

While I was there, she asked to give me a physical exam and offered to drain my abdomen. Of course, I said yes, and after waiting a bit a nurse came to get me and they got to it. I was really struck by the fact that they just made this happen without complications. I haven’t lived in the US for 7 years, so my experience with the medical system is old, but I don’t really feel like this would happen there.

They drained 3.5 liters of fluid from my abdomen, and there’s still more (!), but they didn’t want to keep draining because it can affect your blood pressure. If we need to, they’ll do it again next week. I feel a lot better, but it’s still uncomfortable. But nothing like it felt before.

There will be a meeting on Wednesday with the team at Champalimaud, but as of right now, the plan is to do a chemotherapy called Caelyx (pegylated liposomal doxorubicin). For this one, it’s administered once every 4 weeks. We will do it 3 or 4 times, depending on side effects and bloodwork, and then do another scan. Besides the usual hair loss (which I don’t have anyway), the main side effect is hand-foot syndrome, a skin reaction that affects the palms of your hands and the soles of your feet. Fun times. But, the plan is to start at a reduced dose and go from there, which I very much appreciate.

So. Tuesday we leave Faro. Wednesday our stuff gets delivered and a group of doctors decide on my treatment. Thursday I have a pretreatment appointment with an oncology nurse and bloodwork, and on Friday hopefully (most likely depending on insurance approval) I will have my first new infusion.

Fingers crossed that this all goes smoothly and most importantly, that it fucking does something positive. So if you can light a candle, set out your crystals, say a little prayer, or whatever it is that you believe in, it would be hugely appreciated. Honestly, I’m a little confused right now about what I believe in, but I’ll talk to my therapist about that on Monday.

And one more ask… let’s all cross our fingers and toes that Winnie adjusts smoothly to being a City Bitch. We all know that Lola can handle it. LOL.

xo.

Things are afoot.

The big news is that we are moving back to Lisbon in two weeks (!) and our house is for sale. It’s a bittersweet but good decision. I feel really solid about moving back, and we’ve scored an amazing (rental) apartment in a quiet but dynamic residential area with loads of access to stuff. And it feels like time to be getting all of my treatment at Champalimaud. It’s been a super hard year and I need to be in the place that can offer me the most in the timeliest way possible. And with this hard year, being near our deeper network of people is really important as well.

Yesterday was my last infusion at the hospital here, and my last day with the nurses in the treatment center. I have had a really hard week so I wasn’t able to bake anything for them, which was a real bummer for me. But I do have one more doctor’s appointment next week and my plan is to stash some cookies in the freezer this weekend while I’m feeling okay and bring them then.

I had CT scans today, of course on a Friday, so we have to play the waiting game. Of course, I’ll try to read the report on my own and we all know that Dr. Google isn’t a very good doctor.

So, change is in the air. And oh, we had a lovely trip to France with side stops in Italy, Corsica, and a 13-hour sailing crossing of the Ligurian Sea which was a once-in-a lifetime experience. The weather was a bit all over the place, but that gave us some cozy cabin time. I got lots of reading and naps in.

That’s the latest. Packing starts in earnest tomorrow, and hopefully, I have the stamina to get my parts done. We’re being very adult and hiring movers to pack the kitchen and other stuff. And they take the furniture apart, move it, and put it back together. Luxury.

I’ll update as I know things.

xo.

No real updates, things seem to be chugging along.

My dad was here and that was good.

I went out for some meals and that was nice.

The white blood cell booster shot kicked my ass.

My body hurts because of that and I’m trying to figure it out.

It also messed up my appetite and I was enjoying eating.

I still have this dumb cough.

We’re going on a holiday and I’m excited and nervous about travel kicking my ass.

I need to go pack because I have chemo tomorrow.

xo

I wrote an update.

I went out to dinner.

I had gelato. More than once.

I had my head shaved.

I retail therapied with new Birkenstocks (which I needed, so does it count?).

I rested.

I napped.

I went to the beach.

We hung out with friends.

We grilled.

I slept all day because I can barely move.

I put my wig on to show a client.

I lay on the couch.

I tried not to get frustrated.

I try to stay present.

I try to manage this awful stupid cough.

I’m trying to figure it out.

xo

It’s a very pretty wig, and the buying process was very lovely and I felt safe and cared for.

Now she came home with me, and we need to connect. I need to decide when and where to wear her. A wise friend who went through the cancer-related wig-wearing said that I wear her whenever I want to.

Whenever I want to not feel like I have cancer.

Whenever I want to feel pretty.

Whenever I want to feel like before.

When I do the damn laundry.

Whenever I fucking want to.

But right now I’m in the throes of treatment and struggling to feel okay and connect with the part of myself that feels okay and isn’t scared. And it doesn’t help that I’m going for the big head shave tomorrow because my hair is just coming out in maybe not clumps but the strands are playing a togetherness-lets-be-in-a-group game and now I’m scared to touch my head and I’d really like to take a shower. But when your hair is coming out and your head gets wet there is hair everywhere and it’s really upsetting.

I miss my mom.

The mom of one of my lovely sweet friends just died last week after a long illness. My friend was a glorious and dedicated caretaker for her.

I walked to the pharmacy today and while it did make me tired I also felt accomplished and I did stop for gelato on the way home. Maybe next week I’ll be strong enough to walk to the grocery store by myself.

I feel like I want to go out to dinner tonight. Let’s see if we make that happen.

Physically strong, mentally strong, emotionally strong, existentially strong, psychologically strong, one-foot-in-front-of-the-other strong. It’s exhausting.

But don’t called me warrior strong because I didn’t choose this and I don’t identify with that. I was conscripted. I was drafted. Some glitch in the universe made my cells do some fucked up shit. And now my life is no longer the one that I was choosing.

I had therapy Monday and I felt okay. And as the week has gone on I’ve felt more sad and I’m not sure why. Maybe it’s the full moon, that’s easy to pin shit on, right?

Anyway, I had chemo yesterday, and I have my break week so I’ll be paying a lot of attention to how I feel.

We’re trying to plan a trip for the next break cycle and I really want to be a fun girl who goes on fun trips.

My dad is coming to visit and that feels special and good. I’m really proud of him and where he’s at with taking care of himself and taking forward steps while deepening his connections to me and mom. He’s handling shit that he didn’t choose.

So that’s the latest.

xo

Now that I have two infusions under my belt, I’m also trying to understand new side effects. But what’s a side effect from the new stuff and what is residual stuff from the other stuff? It’s really confusing.

Some days I feel like I’m walking through jello. Some days it feels impossible to get out of bed. Some days I feel like my old self is right around the corner and I can’t get to her. Some days she’s there but just for an hour. I don’t understand why it’s so elusive.

I want to do basic chores without feeling overwhelmed. Without having to work up to it and without then having to rest after. I want to do a thing that takes 20 minutes and have it actually take 20 minutes. Not an hour and still not done.

I’m feeling mostly okay. The weekend after my second infusion was okay. But then days 4 and 5 after it were pretty rough. I just need to continue to be really aware and really gentle and patient. It’s exhausting.

The next infusion is on Thursday, and that starts the cycle again. Friday I’ll have a shot to boost my white blood cells. Then the second infusion a week later, then the longer time off and we start again.

I really wanted to have it all figured out and already understand how this chemo behaves in my body. But I guess I have to accept that my body going into this chemo was pretty unhealthy or maybe unstable and definitely not normal. So then why would I be able to figure it out as usual?

I can control what I can control. That is the thing that has to stay at the front. I can control how I can take care of my body each day. I can control how I choose to meet myself, no matter what it is that I am “supposed” to be doing. I can control how I respond to each side effect or physical problem that comes up.

All I can do is my best. And that is all each of us can do. I’m overwhelmed by my physical situation and that’s okay. I am doing what I can to be strong and get healthy and find my way back to whatever I want normal to be.

xo

I had my first infusion on Friday, which came as a surprise as the week was a roller coaster of insurance uncertainty. Wednesday afternoon I was approved, but Thursday was a major holiday, so on one hand, I was told I’d have chemo Friday, but the nurses didn’t confirm it, and to me, the nurses are in charge.

I was taking a morning doze on Friday and my phone rang… one of the nurses was asking where I was and if I was on my way. Panic set in, it was 8:45 am and I had to sort things out. I took myself off to treatment with the hope the dogs would get sorted with some friends and pulled up to the chemo bar.

[The dogs got sorted because I have lovely friends.]

The usual: bloodwork, wait, nap, wait, results, premeds, chemo, lunch which I only picked at because me and food were still being weird, post meds, nap, wait, list of side effects, go home, fingers crossed.

I was exhausted, but I have to say, and this happened when I started the Paclitaxol, but I could feel the poison in my body doing what it was supposed to do. I didn’t feel great but I felt like the bad inflammation was being pushed aside. I didn’t feel good, but I could feel the edges of an appetite. I didn’t feel okay, but I felt the bad pain melting a bit.

Friday night I didn’t have a fever. I had terrible night sweats, but no cancer inflammation-induced stupid fever. I picked at some food, I had a bowl of cereal. I slept. My cough was noticeably better. Saturday morning I went to get my post-infusion white blood cell booster shot and the nurse said I looked better. I went and got my first haircut in 8 months, which is largely in preparation for my hair falling out (which my doctor still says might not happen) and getting ready for the wig I am going to get this time.

Then I went home and took a nap and one of my best support people came to spend the weekend with me. We watched bad tv and movies and had a mix of healthy food and naughty food, and she helped me do my laundry, and we hung out like normal friends having a weekend together. We went for a walk and had a snack at a kiosk, and acted NORMAL. I cannot thank her enough for helping me to have this moment of feeling normal.

Oh, and I mentioned a wig this time. I can’t deal with the hair loss again. It gives me a lot of anxiety. So I’m doing the dive into WigLand and contacted the person recommended by the hospital and had an appointment with him. One of my other dear support friends here was my wi(n)g woman for the appointment and between her presence and how chill the wig guy and his wife were, I felt safe and actually okay about doing this thing.

Next infusion is Friday. The supposed schedule is Day 1, Day 8, then a week off (which counts more than a week), and Day 21 but can also be called Day 1 and restarts the counter. Something like this. The biggest thing is my white blood cells staying alert and the other side effects manageable.

Fingers crossed, y’all. One down and I am feeling some tendrils of hopefulness. Cancer can take from you whenever it wants, but I want to take from it first. If it’s going to help me to be stable, then it can have my hair. I’m figuring out how to control what I can and hold onto that.

xo

Here are my cards. They all suck. No, I’m not writing you from our trip to Ireland. Why? Cancer. Why? Does it really fucking matter? No. Once again we are in the grip of the boa constrictor called metastatic breast cancer. Do the details matter? Not really. Was I super sick last week for a myriad of reasons that completely fucked up our trip? Yes. Did the new oral chemo make me super sick from just two doses? Yes. Is everything fucked? Yes. Do I have to start IV chemo next week? Yes.

Don’t call me strong. I’m not strong, I just don’t have any choices. Well, sure, I have two choices: keep putting toxic shit in my body in the hopes that it makes the thing that is trying to kill me go away, or give in. I’m 52 and neither of these are good choices. So basically, I have zero choices. I just put one foot in front of the other. That’s not being strong or a stupid fucking “cancer warrior”, it’s just trying to take my life back. It’s trying to live. I had a friend my age who gave in (no, that’s judgmental, perhaps succumbed, did she let go?) last year, and that was her choice, and she was a beautiful light. I just can’t fathom that for me, for us. I’m not there, I’m too angry.

So I am choosing the way that means you bang your head against the wall over and over and over and it never seems to end and you feel completely out of control and powerless and angry and sad and terrified and all the other things.

And don’t forget that there are two people trapped in this. At least last year when I ruined Brian’s birthday with cancer treatment, he could still go on his celebration trip to be with all of the friends I had gathered. This trip was about us and being together and having a moment to breathe in one of our favorite countries. But no, cancer said, you don’t get that. No breathing for either of you. How about some more hard shit on top of all of the other hard shit? We are overflowing with hard shit.

Brian has been everything. Brian is amazing. But Brian is scared and lonely and exhausted and feels trapped too. We are angry, but what are we angry at? There’s nothing defined or specific to be angry at so that makes us feel more trapped. For two years he has been in it, observing, asking questions, doing the things, and feeling helpless. I have asked so much from him and he has shown up. At what cost to himself? When does he get care and attention?

Why won’t my body cooperate? Why can’t I be one of these people who’ve found success with a treatment? When is it going to be my turn? I feel desperate, and that’s not a good feeling to be in.

I needed to be brutally honest. And if it’s too much for you to read, if it’s too hard for you to hold, that is what it is. I’m not going to apologize for being honest and real about how I am right now.

Chemo is either tomorrow or Tuesday, depending on insurance and all of those things. I’m hoping I get to reunite with the cold cap so that I can try to keep my hair at the very least. This chemo is called Sacituzumab Govitecan, US brand name Trodelvy. It was originally created for metastatic triple-negative breast cancer, but has been approved for other uses and I meet those conditions. You can read more about it here, but as usual, please read “survival rate” statistics with a grain of salt.

So. This is where we are. I’ve been sick for over a month from one thing or another. I’m about to step off the high dive and I don’t know what the safest dive to do is. I hope there’s enough water in the pool.

xo

Oh, the day after my last post I saw my oncologist, and this infection was brewing, so we started on some antibiotics, thinking we’d knock it out in a few days. At the time, the new plan was also hormone blockers for a few months to see how that might go. It was all supposed to be easy-peasy, things are looking pretty okay.

LOL.

I was in the hospital for 7 days because I had to do a 7-day course of intravenous antibiotics. 7 days in the hospital sucks, no matter how kind and attentive the staff is. There is no such thing as rest in the hospital. It’s noisy, there are lights, there are call buttons, there are roommates. That’s for another post.

So Friday the IV stuff all starts. I spent the better part of the day in the urgent care hooked up to IVs until they could take me upstairs. The internal medicine doctor was really nice. They all moved relatively quickly. I had a small fever, but each day I did start to feel a bit better. I had ALL the bloodwork. If you can think of a blood panel, I had it. They can’t use my right arm because that’s my breast cancer side, so my left arm has been through it. Finally, on Sunday there was a nurse who knew how to tap the old port, so they were able to start using that. Also, part of the protocol includes blood thinner injections in your stomach, and I look like I’ve been in a hell of a fight.

Sunday and Monday I read a book and was feeling pretty perky. Then the fevers started again. On Tuesday I met with my oncologist who had collaborative conversations with the internal medicine doctor… it’s a bit confusing, her name is Doctora Andrea, and the oncologist is Doctor Andre, and then there was another Dr Andre at some point. Wednesday I felt like I was beat in the head with a board. They changed some meds and I started to feel a bit better.

The determination was that the fevers and the continued cough were not related to the respiratory infection, which at the point was clearing up, even though I’d had some wild white blood cell swings. My tumor marker (CA 15.3) had doubled, and even though this isn’t always a reliable measure in general, mine is a good predictor that something is up. I was 3 chest X-rays and one CT scan in, so we knew that my lungs were okay.

The CT scan showed some inflammation on the OG asshole liver lesion which was then impacting my diaphragm, making it difficult to breathe normally and creating this awful cough that then caused incredible pain in my abdominal muscles and back. The back pain is also related to the cancer-related inflammation in my body. And the fevers are another response to the inflammation, and very unpleasant, and it’s hard to nail down exactly the right time to take the meds to get it to stop. I’ve learned that it’s bad to wrap up and it’s important to at least stick your feet out, and if you can, you should put something cold in your armpits and groin to help bring your body temperature down.

I came home Friday evening and I’ve just been sleeping and walking a bit and trying to get my stamina up. I feel really weak from a week in bed and profoundly exhausted from not having restful sleep.

On Wednesday I have an appointment with my oncologist to do bloodwork and start a new treatment. We’re going for Capecitabine, which is an oral chemo. We’ll do two cycles of this (🤞🏼 side effects are manageable) and then assess how it’s going. I think it’s 3 weeks on, 1 week off. Blood work checks will be a regular thing.

It’s really hard to be sick without your mom. My dad has been amazing. It’s about to be two months since she died and that’s just weird. Their communities in PA and St. Martin have been so loving. She was really involved in the gardening and landscaping boards in PA, and they planted a tree in her honor. My dad chose a Japanese red pointe maple because her favorite color was red. It’s going to be a huge tree.

So that’s that. My last month in a nutshell. It’s kind of sucked. Here’s to getting over this hump and meds working and not making me feel too awful.

xo

I had out-of-nowhere knee pain so bad I could hardly walk, and it went away as suddenly as it arrived. Then I had deep muscle pain behind my ribs and I could barely breathe. Then I was exhausted and could barely get out of bed. The last few days I’ve felt bloated and like I have a stitch in my side that just won’t go away. I had a cold with a low-grade fever. I’d just like a bit of a break from all my maladies.

And the mom thing is this wild sense of emptiness. Some days I don’t realize it, but other days it hits hard. That’s why I haven’t written much; I haven’t known what to say. And maybe there isn’t much to say right now.

One thing that I’ve been thinking about is memories. There isn’t anyone else who holds some of the same memories that I do. I grew up as an only child, and now that my mom has died, the some of memories that we shared only belong to me. Those are the memories from before she met and married my dad (I know that’s a confusing sentence… biologically my stepdad, but my only DAD; the person who raised me and was there always, he’s the DAD). So those before memories are my responsibility. But there are things that I feel like maybe I don’t remember. And there’s no one to ask. So that feels like a chasm.

And that leads to Stuff. What do we keep? What do we hold onto? What do we preserve, but for what purpose? Heirlooms have a weight to them. How do the people left behind get permission to let go of the Stuff? To allow the Stuff, the Things, the Heirlooms to have new lives with new people? How do we separate the not wanting to carry the weight of someone else’s Stuff from the person we love and miss?

Some Stuff can be a sweet and lovely reminder of how and why that person was important. How do we hone in on that and allow ourselves to let the rest of it go?

We carry the best memories, and the best of our people in our hearts, right? Of course, we also carry the hard memories and the hard times and the traumas big and small. No one is perfect, relationships are hard and people are flawed. So of course it’s confusing and complicated and heavy.

And so we go back to one day at a time.

xo

*I just read this and my inner therapist says I have to reframe that. It’s not silly. It’s a lighthearted thing that shows you feel seen. It’s not a “serious” thing, so you can easily brush it off as silly. But it’s also very real.

Last night I was making dinner and a thought fluttered through my mind and I was overcome by sadness and anxiety because I couldn’t text a picture of what I was making to my mom. Or that I was using the dicer attachment on the new Cuisinart for the first time.

So I cried a bit and got a hug from Brian (and both dogs) and then decided to text my aunt and that was lovely.

Grief is hard, and grief is inherently lonely because we all “have to” have our own experience of our grief. My grief isn’t going to be the same as what my dad is experiencing, or what my aunt is going through, or what my mom’s friends feel. And that’s okay. We can show up for each other, but we still have our own experiences. And we can do our best to take care of each other and give each other the space that we need, but we aren’t responsible for making it “better” for each other, that’s a thing that we do for ourselves. Because “better” is also different for each of us.

Today I’m going to pottery, which is also a thing that I would share with her. And I’ll give myself permission to feel sad if I need to, and to maybe have her voice in my head. But also there is space for pottery to just be pottery and maybe I won’t think about it at all.

*

Medical updates:

Chemo is over, and I’m on a medication break. Brain MRI was on Monday, I haven’t gotten a report or any phone calls so we’ll call that good. I have an appointment on March 20th with my oncologist to go over the plan, which will be based on the BRCA test and MRI results.

I’m going to enjoy this pause and do my best to not worry. It will be interesting to see what my body feels like with no wild toxic treatments streaming through it.

*

My mom’s obituary can be seen here.
As per her wishes, there will be no service.
♡

*

xo

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Life is complicated and sometimes we have to hold a lot of things all at the same time, and wow, that’s where I am at right now.

A week ago tomorrow my mom died. Just before Christmas, she was diagnosed with a large and invasive glioblastoma, which is a brain tumor. It was discovered in the midst of a major health crisis and was completely unexpected. You can see my Instagram post about her here.

Yesterday our dog Winnie had her spay surgery. In between dropping her off and my doctors appointment we went to sit on the beach for a few hours. The waves were big and loud and beautiful and the sand sparkled in the sun. We watched a person on a stand-up paddleboard own the waves (for the most part) and let the water wash over our feet (and up our legs). It was lovely and calming to have our faces in the sun.

I looked at my bare feet which are the feet of my mother and my grandmother and thought about the ways we carry each other, warts and all. Intergenerational patterns, genetic inheritances, personality quirks, shared trauma, and the impact of choices. We carry our own stories, the stories of others, and the stories we wish were true. We experience one another in unique and individual ways, and we each have our own truth.

♡

And then we went to see my local oncologist and here’s the basic takeaway of where we are at right now as per the PET scan from last week as it’s compared to the one I had in June and the MRI that was between the PETs:

1.⁠ ⁠Things look good and there is improvement.

2.⁠ ⁠⁠As a standard of care, Champalimaud does a brain PET, and because of that I have to have a standard follow-up MRI which is scheduled for Monday.

3.⁠ ⁠⁠Both doctors agree that I should do the final dose of taxol on Friday to complete the four sets and then I am finished with that because of the toxicities I have been experiencing.

4.⁠ ⁠⁠I am doing bloodwork for BRCA testing on Friday because it’s never been done and the new Champalimaud oncologist wants it done. My local oncologist agrees and believes it most likely will be negative.

5.⁠ ⁠⁠The current plan is to do Letrozole and Lupron shots (an oophorectomy was on the table, but it’s all the same and the shots are less invasive) but will wait to start until after BRCA tests come back in about three weeks. They want to move to hormone blockers again because the cells are 100% hormone-receptive.

6.⁠ ⁠⁠The two oncologists are going to consult on the best next treatment plan, there are oral chemos on the list as well.

🤍

Winnie’s oophorectomy (the best option for her) went well and she’s very sad that she’s not allowed to play with her friends at the moment. But she has a follow-up appointment tomorrow and then will be allowed to frolic as usual. Lola has been checking on her and sniffing her owie.

Today I have clients and pottery. Tomorrow I have clients and Things To Do and rest to catch up on and Friday I have chemo and then the weekend is all about rest. One foot in front of the other, one day at a time. Thank you to everyone who has reached out… it’s all very appreciated even if we don’t actually talk.

This year is going to be all about Living. Getting back out there, having Experiences, Seeing, and Doing. Traveling and making connections. And taking moments to pause and breathe. Despite and in spite of all the different kinds of grief that are in my life.

These are my hills and valleys and at this moment my meadow is a beach and there are sparkly things in the darkness.

xo

It’s been almost a month since my last post. That sounded dramatic, and I didn’t mean for it to be. There’s so much to talk about, but also things that are hard to share.

But in the last month, I finished Round Three of Taxol and went to France and started Round Four. My eyebrows went bye-bye and my eyelashes are following suit. I guess it’s time to learn to put on fake lashes. Hopefully, I won’t glue my eyes shut. My hair is managing to hang on AND grow.

I had a PET scan yesterday, and it was a really positive experience. Whoever designed the patient experience at Champalimaud was very thoughtful. Instead of an awkward paper gown, I had a paper t-shirt and pants AND a fabric robe, AND slippers. There are no clocks which feels strategic, but also I didn’t realize that three hours had passed, so it works, just like in Vegas. Plus, in the comfy waiting area, there is a snack cart. Which is amazing when you’ve been fasting for the scan. And not only is there a snack cart, but it has freaking hot chocolate and coffee and you can ask for tea. And there are little rolls with cheese or cake. And real cups and saucers. WHAT? Oh, and they give you a blanket that you carry with you from the beginning. The other place that I’ve done PET scans at is a discount airline and this is business class.

When the scan was finished, it was lunchtime, so I took myself to the cafeteria. Which was wild. There were so many choices. There was beer, regular and nonalcoholic. There was a bank of microwaves for staff who brought lunch from home. And there are outside tables with a view of the water. And my lunch cost less than 6€. And it was good.

After lunch, I went to wait for my appointment with my new Champalimaud oncologist (I don’t think I ever really got into the drama with the other one and that’s okay). She was great, very personable and I felt that she really listened when I talked about the bad experience that I had.

The full report hadn’t been issued yet, but she called the imaging department and spoke to a person and they discussed the new PET versus the last one and the last MRI. Here’s the deal: the preliminary read on the scan is that the spots on my spine are gone and there’s nothing new and alarming. The original spot on my liver continues to be a stubborn asshole and not get smaller. She doesn’t want me to do more Taxol because of the toxicities/side effects I’ve been experiencing, and to be able to come back to it later if needed. She’s recommending hormone blockers and to discuss an Oophorectomy, which is the surgical removal of the ovaries. She also recommends that I do the BRCA test, which will be an aid in assessing treatment options.

So good news. And switching treatments is also scary because it’s unknown. But also the sense of freedom I feel when I think about no chemo is amazing. The reality is that this can all change again. And that it WILL all change again, because that is the nature of metastatic breast cancer.

Cancer is tough y’all, and not just in the obvious ways. Too many of my heart people have had to deal with this, and even when it’s “gone”, it’s not gone. Cancer can feel really fucking lonely, and it becomes an invisible illness. Good news IS good news. But it’s also the news that we get in that moment and we can try really hard to hold onto it, but there’s also always that feeling of something possibly lurking in our shadows.

xo

Am I okay? Not really.

Am I managing? Well, yes.

Am I taking care of myself? Doing the best that I can.

In MBC (metastatic breast cancer) news, I had a doctor’s appointment today with my oncologist just to have a touch-base sit-down, and he’s very happy with how things are going. I’ve done one treatment of Round Three, and while I’ve had a really hard week feeling super exhausted, he feels good about all of the blood work. My tumor marker had a tiny uptick during my week off which is 100% normal, and to which I added jet lag and stress. I’m still a bit anemic, and he added an iron supplement instead of getting infusions.

I have a PET scan scheduled for mid-February, which will be after I finish Round Three. I’m hoping the scanxiety for that won’t be too bad, I’m going to have a good distraction right before in the shape of a trip to France. My insides will look like cheese and baguettes and pain au chocolate. Then I will have Round Four, and depending on what the PET scan shows we’ll make decisions about moving forward with a maintenance dose of the paclitaxel (how things are leaning right now) or other options.

To quote from one of my favorite podcasts, What I’m Doing My Best At This Week is listening to my body. I’m taking naps and lying down and not doing things even though I’d like to. I skipped pottery today because I was just too wiped out. And all I did today was a doctor’s appointment and two clients. But it was too much to walk to pottery and Be Present and walk home. I have a full work day tomorrow and chemo on Friday so my new pottery plan is for Saturday afternoon.

Hard things are heavy. I’m trying not to carry too much of it in my body. My body has other work to do and I’m trying to give it the space to do that. So we put one foot in front of the other and listen.

Time to walk the dogs.

xo.

I have chemo number 3 of set two (of four) tomorrow. I’ve actually been pretty good physically this time around, which has been a nice thing. I’m tired and I tend to get a bit dizzy if I over-exert myself or stand up too fast, and the body inflammation continues to be uncomfortable. But all in all, it hasn’t been as torturous. And my CA 15.3 tumor marker continues to decrease, which is a good thing.

But the hits keep hitting. As the kids say, IYKYK.

That’s all I’ve got.

Happy New Year if I don’t post again before then, peace and love all around.

xo

It’s definitely the taxol because when I get a break these things subside greatly.

At this moment my hair seems to be in a holding pattern of patchiness exactly where I don’t want it (at the top/front) and curly at the back. It’s like I have a mullet and mange.

Anyway, Treatment One of Round Two seems to have gone well. The numbers in my bloodwork were all good, the CA 15.3 tumor marker keeps going down. So even though I’m exhausted and my body hurts and everything tastes weird, I’m feeling relatively positive.

Even so, 2023 can suck it. Yes, there have been some lovely things and special moments, but it’s been hard. And recently we’ve experienced some human losses that hit us right in the feels. On top of a year-and-a-half of metastatic breast cancer, plus a few other Hard Things, that’s too much. It’s like living in the midst of a never-ending existential crisis.

I hope we can find a better rhythm in 2024 between Living Life and Doing Treatment. On deck are a “work trip” through the Loire Valley with friends to go to some of the natural wine fairs, the 20th anniversary of my Seattle book group, and a return to sailing yacht Coconut, maybe this time in the waters off of Italy. It all sounds dreamy. And like the life we were choosing when we decided to move to Europe.

Cancer takes over everything. You certainly never choose it. And my hope and my goal is to try to take some of my power back. Finding ways to work around feeling bad. Trying to plan with and around treatment instead of always being dictated by treatment. Sometimes treatment has to be the dictator, but it would be really nice for my body to get to a place where it’s a bit more collaborative. Ultimately, the cancer cells are going to do whatever the fuck they want until science figures more stuff out. But science is doing a lot of work, it’s just that all bodies are different. And apparently, this body is picky and sensitive. LOL.

Lately, the sunsets have been epic. And I’m trying to pause and take it in no matter what. Feel the feels. Put one foot in front of the other. Not think too far ahead.

xo

And now I feel done for the day. I did a bunch of work this morning, too, but it’s a bit crazy to feel ready for bed at 3 pm.

Last week I finally finished the third chemo of the first set of four. It was great to have such a long break in between… Thanksgiving and my birthday were super nice, a friend made an epic chocolate peanut butter birthday cake, someone else made lychee cocktails, Brian and I whipped up a pretty epic dinner for a crowd, and I felt like myself.

Except that my scalp got really sore at the crown of my head and my hair started to fall out a bit. Not crazy like Before, but enough to be stressful.

On Tuesday (last week) I went back to chemo, and the numbers on my bloodwork were quite good. It’s funny when it was time to go back, it felt like it was time to go back. My body felt ready to take the hit.

I wasn’t as nauseous this time, I think I’ve figured it out more or less and this chemo isn’t as bad in that way, plus there’s meds. After the steroids wear off I do get pretty bad joint pain and body aches. I have to figure out a type and dose of magnesium that I can tolerate because that is supposed to help, but it usually upsets my stomach pretty violently.

I powered through work on Wednesday and Thursday, and by Friday I was done. We had a lovely last-minute date night at our friend’s restaurant on Saturday night.

This is a break week between sets and because I wanted to go back to Fridays (it’s easier to not feel great over the weekend than to try to work through the bad days) I get a few extra days again. So we are going to take a long weekend and go to Cadiz (no dogs!) to explore and eat tapas. Chemo will resume on December 15th.

My hair is still coming out and I’m getting a little self-conscious so I made a headband with some fabric from my stash. I need to dig through and see what else I have that might not scream Cancer Cap and maybe knit a new hat. I’m going to keep doing the cold cap, and I’ve read that some people do have regrowth while doing Taxol, it just depends on the dose and your body. And I think I’ll knit a new hat.

It was also a sad end of the week last week as one of our lovely neighbors died. She was one of the first people to befriend us and helped us to feel like a part of the neighborhood. She was at Thanksgiving a year ago, and this year she rarely left the house. So there’s a bit of a hole in the fabric of the community.

So that’s what’s up.

xo

So my white blood cells specifically neutrophils are too low this week, so no chemo.

Wow, no chemo this week! What a nice thing! Yes. But. Then the anxiety starts. No chemo this week? What will that MEAN?

And. I’m not supposed to have fucking chemo next week. It was supposed to be NEXT week. I have PLANS next week. FUCKING THANKSGIVING. MY MOTHERFUCKING BIRTHDAY. Enjoying the weekend and Doing Something Fun.

Breathe.

Next week, Monday or Tuesday is too soon. Wednesday will fuck everything up. Thursday LOL. Friday is not an option, no way am I doing chemo on my birthday.

Breathe.

Ok. The agreement is that Tuesday the 28th isn’t that many days after Friday the 24th so it’s fine to schedule it for then.

Breathe.

New plan. I’m going to enjoy my break and let my body get strong.

xo