Hate and Death

I don’t usually write about mass shooting incidents here on the blog. I cry every time one of them happens, and I wish desperately that they would stop happening, and I support Moms Demand Change. But writing about someone else’s pain is hard for me–I worry about further upsetting the families of the victims, because I’ve been known to seriously shove my foot in my mouth in these situations. 

But a dear friend of mine from the LGBTQ community reached out to me and some other cancer folks and asked us to stand up for her community, and she has stood up for the metastatic community. And she’s right–I shouldn’t sit quietly for fear of saying the wrong thing. We all need to say something, SAY SOMETHING, to show the LGBTQ community that we care about them, and that we have their back.

It’s not OK to hate people. It’s not OK to hate people because they don’t share your religious views. It’s not OK to hate people for who they love. It’s not OK to hate people because they’re Latino. It’s not OK to hate people. IT’S NOT OK TO HATE PEOPLE.

It’s not OK to shoot people. It’s not OK to shoot people because they don’t share your religious views. It’s not OK to shoot people for who they love. It’s not OK to shoot people because they’re Latino. It’s not OK to to shoot people. IT’S NOT OK TO SHOOT PEOPLE.

Nobody needs an assault weapon. Nobody needs extended clips for maximum murdering power. Nobody with a history of domestic violence should have access to any kind of gun. Nobody on a terrorist watch list should have access to any kind of gun. Nobody with a history of mental illness should be able to buy a gun. NOBODY NEEDS AN ASSAULT WEAPON.

I can only imagine the pain that the LGBTQ community is experiencing right now, but I want to wrap them all up and hold them close to my heart and tell them that I love them, that I’ll always stand by them, that their love is just as beautiful as mine. That no matter how many people try to shower them with hate and death, they have allies–we are their allies and we will stand with them to reject the ideology that says they’re less than us.

On this mets Monday, I hope that we in the metastatic cancer community will stand with our allies in the LGBTQ community who have supported us in our fight to stay alive. I hope that we’ll show our allies that we are also their allies, and ask how we can help them. I hope we’ll stand with them at Pride events this month, and call out homophobia and prejudice every time we see it. And I hope that the LGBTQ community will feel our love.

Sometimes there aren’t enough rocks

This morning I woke to the sound of my alarm that reminds me to take my morning Xeloda. I took my pills, picked up my phone, and saw that my friend Bethany had died. She went into hospice very recently, and I knew she was pretty sick, but it still comes as a shock, as a slap in the face, every time this happens. I called her best friend and left a message for her telling her that I love her, and we texted a bit. I said a lot of swear words.

Then I texted #bestdocever to find out how my tumor markers were from my blood draw on Friday. (The results didn’t come back right away like they normally do–we’d been texting over the weekend about it as he kept checking for them.) He called and said that my hematocrit is 26, so he’s happy to offer me a transfusion if I’d like one…and that my markers are up a bit since last month, so it’s time to abandon Xeloda. My cancer is a fast learner, just like me. We’re switching to Afinitor plus Exemestane, and we’re gonna see if we can add some other drugs to maybe get me some combination therapy, motherfuckers. 

I went for my Denosumab shot this afternoon, then went for the a type and cross blood draw. Now, I’ve had quite a few transfusions since Carboplatin fucked up my bone marrow last summer, and each time, they poke me once, fill two vials, and move on to the next patient. This time, it was apparently a new tech, because he said he had to poke me twice, once for each vial. I was literally too tired to argue with him, so I just let him poke me twice, once in my arm and once, more painfully, in my hand. I told The Hubs about it after and he was horrified.

This is how I feel right now. 

Combination Therapy, Motherfuckers!

So, here’s the thing about metastatic breast cancer treatment: you usually get one drug at a time. We call this single agent therapy. So, like, I’m on Xeloda right now, and that’s it. We get one drug at a time, and when that one stops working, we switch to another one, then another, until all the drugs are gone and then we die. This sort-of made sense when chemo was all we had, because being on multiple chemos at once makes you feel horrible. Wait, that’s not a strong enough descriptor of what it’s like, so picture this: vomiting every day, being to weak to get out of bed so you shit yourself, rashes, mouth sores, being able to die of a cold because you have no immune system to speak of…and that’s not even all of it. 

So, since you’re going to die anyway, I mean, why would a doctor put you through all that? The answer is, they wouldn’t. Instead, they try to buy you a few months here, a few months there, without ruining the average 33 month lifespan you have after your MBC diagnosis. 

This all made sense to me until I read The Death of Cancer, which blew my mind. Do you know why Hodgkins has a high cure rate nowadays? Because some doctors said “Fuck this, let’s just poison the shit out of this cancer until it’s GONE.” And they gave patients not one, not two, not three, but FOUR different chemotherapy drugs at once. It was called VAMP for short, and guess what? It worked. Because instead of just attacking cancer one way, they attacked it on multiple fronts at once. Instead of seeing the patients as terminal and trying to make them comfortable, these doctors saw the patients as people who should get to live normal lifespans, and they set about to make it happen.

After reading that book and talking to some smart cancer researchers, I’m now convinced that combination therapy is where it’s at. I see how the story ends for my friends who run out of drugs to try, or whose bodies become so fucked up by years of continuous single agent chemo that they can’t tolerate any further treatments. Fuck that. I don’t want to slowly decline for another year or two and then die. I want to send in all four branches of the military to fucking destroy the cancer.

I realize that this requires a dramatic shift in thinking for oncologists. Y’all have been trained that single agent therapy is the way to go because combination chemotherapy is brutal. And I bet it’s really hard for any of you with a conscience to watch your patients go through what combination chemotherapy can do to them. But, let’s talk about how little the outcomes have changed by just doing single agent therapy: in the last 40 years, the average lifespan after MBC diagnosis has gone up about a year and a half, most of which is spent feeling like shit anyway because even single agent chemo is pretty shitty. That’s it, 40 years of research, 18 months in improved survival. And, now we live in the era of substantially less toxic immunotherapy drugs. The time is ripe for a change of philosophy, from extending life a few months to turning our disease from a terminal one to a chronic one.

Apparently I’m not the only one who thinks this is a good idea, because I read today that Pfizer is planning to study a triple combination of immunotherapy drugs on patients with advanced cancer. IT’S ABOUT FUCKING TIME. I hope other Pharma companies and researchers will take this approach more often, so that it can start happening in the clinical setting ASAP. 

As always, my touchstone for cancer activism is how the AIDS movement made it possible for people with AIDS to live a normal lifespan. Know how they did it? Combination therapy. But it took them demanding better drug development and getting the people in power and the Pharma companies to listen for combination therapy to come about. I’m prepared to scale the walls of the FDA or the NIH if that would make the change happen–but I hope that it won’t be necessary, and that researchers will stop seeing us as dying, and start helping us live.

Why the Accelerating the End of Breast Cancer Act is stupid and pointless

I’ve about had enough of the National Breast Cancer Coalition. They ignored the requests of MET UP and Metavivor to include treatment for the already-metastasized patient in their Deadline 2020 plan–they say mets research is too hard, so their plan to end breast cancer is to just prevent future breast cancers and metastases, and I guess just let those of us with mets already to die off. Think I’m kidding? Read about how they treated the one metastatic patient in the room at their Artemis meeting. It was cruel, and bullying, and silencing of a patient who is actually dying of this disease.

So, this weekend, they’re having a summit and lobby day to promote their plan that excludes treatment for metastatic patients. It’s Senate bill 746, known as the Accelerating the End of Breast Cancer Act. Sounds exciting, right? What will this bill do to, you know, accelerate the end of breast cancer? It’ll create a commission. That’s it. That’s the whole bill. A commission. Because lord knows a presidential commission is all we need to end breast cancer, amiright? We just need a few handpicked people, like, say, the director of NBCC, and suddenly everything will be fine and breast cancer will disappear. Hooray!

Did I mention that the bill says that the primary duty of the commission is to “identify, recommend, and promote initiatives, partnerships, and research within the public and private sectors, basic and applied sciences, and epidemiology that can be turned into strategies to prevent breast cancer and breast cancer metastasis.” Notice the part where they, once again, left out people who already have mets? It’s one thing for a lobbying group to reject our please for help; ┬áit’s another thing entirely to entrench that cruelty in federal law.

This is why I oppose the Accelerating the End of Breast Cancer Act. Because it’s stupid and pointless and will literally do nothing to save my life. I hope you’ll all write, email, tweet, and otherwise contact your legislators to ask them to oppose Senate bill 746.

Well, that was short-lived

My dance with NED is over already. Here’s what happened: I was on 4000 mg of Xeloda a day, and the side effects started to build up on me. My fatigue was bad, like, not getting out of bed most days. You can judge how bad my fatigue is by how messy the house is–The Hubs has his hands full working full time and keeping the kids alive, so cleaning is pretty low on the priority list these days–and let’s just say there were so many toys scattered around, there was nowhere to sit in our living room. In addition to the pretty extreme fatigue, I was starting to get neuropathy in my hands and feet, another known side effect of Xeloda. 

So, we reduced my dose to 3500 mg a day, and then 3000, with a one week break thrown in too. And then I felt much better. The neuropathy was gone, and I actually made dinner a couple of times. I picked up the living room, too, and helped The Hubs move furniture onto our new deck. It was indeed a golden age. 

Except, then I had my regularly scheduled PET last Monday. I got the results Friday, and one of the spots in my liver and the spot on my humerus lit up a little bit. Let me explain a bit about PET scans: they give you this radioactive stuff, and they look at your body in general and see how much it lights up on the scan, and then cancerous spots light up brighter, and they measuring the difference. My two spots aren’t THAT much brighter, but enough to say they’re growing.

So, #bestdocever (who you can now follow on Twitter at @drmarzbani!) gave me some options. Option 1: keep on with the lower dose I’m on and see how it goes. Neither of us thought that was a good idea–we both would expect more progression with that plan. Option 2: increase my Xeloda dose back to 4000 mg a day and live with the side effects, and scan again in 2 months instead of 3, to see how it’s working. Option 3: switch to Affinitor and keep Xeloda in our back pocket for later. I asked #bestdocever what he thought was the best plan, and he said Option 2 or 3, but he couldn’t really say which was better. He did promise that if the fatigue got bad, he’d give me a transfusion as soon as I felt crappy, and he’d definitely transfuse me before the ASCO conference the first weekend of June. (He also agreed to come to the conference, HOORAY! So, those of you stalking us will be able to find us in the sea of people at ASCO!)

I went with Option 2, because I feel like this: I want to stick with each drug as long as possible. I had such an amazing reaction to the high dose of Xeloda that I feel like it’s the right thing to do to go back on the high dose and see what happens. So far, the extreme fatigue hasn’t returned and neither has the neuropathy, but I’m only a couple of days into the higher dose, so we’ll see how it goes. I was very tempted by Affinitor because its side effect profile doesn’t include the level of fatigue that comes with Xeloda, which is, after all, chemotherapy. But if the high dose of Xeloda works to beat back those two tumors, or at least keep them in check, then I’m going to ride that train until it crashes. And if not, then I’ll switch to Affinitor.

NED is indeed a fickle one. He passes in and out of our lives, and this is a reminder that NED is not someone you can count on. I was shocked when he walked into my life, but I’m not shocked that he’s gone again. I’m also not freaked out at the moment. I know there are a lot more treatments I can try–there’s still a lot more IV chemos for me, and hopefully some new immunotherapy drugs will come along too. I told my Facebook friends not to panic, and I want to say the same to all of you. Keep calm and Xeloda on!

Hey Allies: Time to Help!

A lot of times, people who want to be allies to to the metastatic community ask “How can I help?” Beyond listening and being emotionally supportive, I don’t always have a specific thing I can ask them to do–but today I do! And it’s suuuuuper easy to do. You can do it in your pajamas. You can do it at work. You can do it sitting on the toilet while scrolling on your smart phone. (Don’t lie, everyone does it. This is why they invented Clorox wipes.)

Here’s what you do: Go to this webpage. Put in your info in the right hand sidebar. Click “Sign Now.” Then share it with your friends and family and ask them to do the same.

What is this thing I’m having you sign? It’s a White House petition. It works a lot like a change.org petition, except, if you hit 100,000 signatures, the White House promises to respond, unlike a change.org petition, which nobody is obligated to do anything with, no matter how many signatures you get.

Why did I start this petition? Here’s the situation: you may have been reading about the Cancer Moonshot that the President announced in his State of the Union speech this year. It’s an exciting time in cancer research–we now have the tools available to really make significant progress in preventing cancer deaths, and the Moonshot can help make that happen faster. Saving 5 years in research time could mean saving 200,000 lives in the US just in breast cancer alone, let alone across all cancer types, let alone across the world. 

I’m a big supporter of the Moonshot. A lot of its goals are really important and have the potential to be game changers for cancer patients, including metastatic patients. But there’s one key piece that I think is missing: there’s no specific goal on understanding metastasis. About 90% of all cancer deaths, across organs of origin, are caused by metastatic disease, and in breast cancer, that figure is almost 100%. Understanding the metastatic process–how cancer spreads, and how to stop it–is vital in ending cancer deaths. 

But currently, very little research money is being spent on understanding metastasis. In breast cancer, it’s only 7% of research dollars. This kind of underfunded research area, one key to preventing cancer deaths, is just the sort of thing the Moonshot should be working on. It should be bringing focus to areas that desperately need better research–and it’s doing that for childhood cancer, for epidemiology, and other important topics. I just firmly believe that metastasis research should be one of those topics.

So, my petition asks that metastasis research be added as a specific goal of the Moonshot. I’m not asking for money (although shifting funds from early stage cancers to those that cause most cancer deaths would also be delightful!), and I’m not asking to remove any of the other important goals the Moonshot has identified. I’m just asking for metastasis research to be added, because I believe adding it will save lives. 

If you tend to agree with me, please sign the petition, and share it as widely as possible and ask your family and friends to sign it too. Everyone has been touched by cancer in some way, and many of us have had family or friends pass away from a metastatic cancer–my grandmother died of metastatic melanoma–and so I hope we can all come together around the issue of metastasis research, so that less of us have to lose a loved one to cancer.

An Anniversary

I’m flying home from the Living Beyond Breast Cancer Thriving Together Conference as I write this, and I’m terrified to check in on social media. This time last year, I was crying because a truly beautiful person with metastatic breast cancer, Seporah Raizer, had just died of our disease, and I realized that she was one of the 113 Americans we had been honoring with our very first die-in. I certainly wasn’t the only one who sat in an airport bar that day crying my eyes out that such an incredible voice had been silenced forever, that someone who should have had so much life to live, had no more life in her body. 
It was hard enough leaving Philly and the new friends I had made that weekend–friends doesn’t feel like an adequate word to describe the relationships we’d developed, but I haven’t found the right word to express that feeling–and I sat in an airport bathroom and bawled my eyes out because I was terrified I might never see some of them again, that they might not live long enough to be with us in Philly the next year. We had all hugged each other tightly and said “I’ll see you next year” but it didn’t take away my terror wondering who would be gone when the following spring came.

Now, a year later, we know who we have lost. Maria, who I can’t think about without my heart breaking all over again. Ishuan, whose beautiful children will have to live without their mother. Holley, who inspired us to share our truth about our disease and gave us a voice.

We honored them this year, and the more than 40,000 other Americans, and the 522,000 people worldwide, who lives were stolen by this awful disease. We walked in a candlelight procession through the streets of Philadelphia to Independence Hall, and we stood near the Liberty Bell in the cold damp air, and rang our own chimes 113 times. It felt like an eternity, and with each peal, I wished that they would stop–that somehow that number would be smaller. Just one less ring, I thought. Imagine what that would mean to a family grieving the loss of that loved one. Just one less ring.

We spoke our truth, and raised our candles, and we held each other close, knowing exactly how we all felt at that moment. The profoundness of our loss, and the fear in these people we have grown to love so deeply, was written in tears on our faces and echoed in our voices.

And then, we packed our things and in ones and twos and small groups, we hugged again and again so tightly, just as we did last year, saying “I’ll see you next year” and hoped that we meant it. And we boarded our planes and climbed in our cars and cried, in grief and in fear, and tried to allow hope to keep us going, as we drifted away from the city of brotherly love.

Being an Ally

This year during Black History Month, my son’s school, which is very white and very affluent, met with students from a high school in a poor neighborhood where people of color are the majority. They talked about what’s going on in their neighborhood, and how they needed help advocating for the school district to provide bus passes for all students at the school. They need the bus passes because it isn’t safe for kids to walk to school in their neighborhood, because there’s so much crime. Our school stood with the high school students at the school board meeting, to show that we were behind them and we care about their community.

Our students learned what being an ally is–it’s not about being part of the community that needs help, but about standing with them and using our privilege to help them. An ally is someone who not just cares about a community in need, but also does something to support them. And what that something is, is what the community says it needs, not what allies think that community needs. So, being an ally requires listening to the community and then asking “How can I help?” 

There’s been a division in the breast cancer world between early stage patients, and metastatic patients. Recently we had a #bccww chat where we talked openly about why this is happening. My theory is this: historically, metastatic patients have felt excluded from the larger breast cancer narrative about “beating” cancer and then celebrating with pink feather boas and “survivor” events. Metastatic patients don’t beat cancer, and we don’t survive cancer–we die of or with it, and mostly of it. 

For a long time, metastatic patients were mostly silent about it. It’s hard to speak out when you’re the only one in your community with metastatic breast cancer, and until the birth of social media, we often felt very isolated. But social media has been a game changer. We can now connect across geographic boundaries, and we don’t feel so alone–and so we’ve begun to speak out about how the early stage-focused narrative of breast cancer excludes us. And we’ve begun demanding that the breast cancer world include us and hear our voices. 

That’s triggered a backlash from some early stage patients who believe in the early stage narrative. Like Joan Lunden, they say we’re too bitter and angry and that we should follow the dominant narrative about staying positive–as if being honest about the reality of treatment only ending when we die is us just being “too negative.” And sometimes people in the mets community say things that belittle the experience of early stage patients, as though having early stage disease is no big deal. As if we’re not all experiencing something traumatic in having breast cancer, at any stage. Our traumas are just a little different–ours is ongoing trauma, and early stage patients’ is past trauma that has a continuing impact.

This division between early stage and metastatic breast cancer patients is a serious problem. We need to begin to build trust and understanding between us, because we in the metastatic need allies in the early stage cancer community. We need allies who see we’re in need and then do something to help us. 

I think it’s vital that early stage patients open their hearts and learn what life is like for metastatic patients. Too often our voices are still ignored, as are our pleas for help to the wider breast cancer community. Our needs aren’t part of the breast cancer advocacy that the National Breast Cancer Coalition pushes. While prevention is a noble goal, it ignores those of us who are already living with metastatic cancer and need help now, before we die. And when we bring it up, too often we’re silenced. Listening to us a necessary first step for early stage advocates to be an ally to our community. 

And that something is helping us advocate for research dollars to flow to better treatments for metastatic cancers. 90% of cancer deaths happen because of metastasis and yet very little of the research dollars flow to metastatis research. In breast cancer, it’s only 7%–and virtually all deaths from breast cancer are from metastatic breast cancer. I know some folks like Susan Love have questioned that figure, but if you look at how MBCA conducted its research–literally going through every grant to see what it area of research it was funding–you’ll see that this is a solid figure. And an alarming one. 

And, I hope people with early stage cancer will understand that we need allies because we’re dying. It’s not easy to be an activist when your ongoing chemotherapy leaves you too tired to get out of bed. It’s not easy to get the ear of people in power when you can’t afford to travel because you can’t work anymore. It’s not easy to demand change when you’re dead. The privilege of surviving cancer is something we in the metastatic community don’t have, and we really hope that early stage patients will use that privilege, their staying alive, to help us who cannot stay alive. We literally can’t do this alone–we need allies, who listen, and then ask “How can I help?” 

Hand and Foot: SO GROSS

Time for an update on how treatment is going: I’m dealing with some side effects of Xeloda. My fatigue is still real. That blood didn’t do much for my energy–I’m no longer anemic, but still fatigued. We went out to the coast and I was too tired to go for a walk with the family. I walked up the stairs of our beach house to get my coat, came back downstairs, and was like “Nope, that was all the energy I had.” I didn’t even get to see the beach while we were there, because I literally didn’t have the energy. Sigh.

Fatigue sucks, but it’s not my only side effect of Xeloda. I’ve also developed what is known as Hand-Foot Syndrome. Hand-Foot isn’t talked about much outside of cancer land, so a lot of folks who don’t have cancer aren’t familiar with it, so let me explain how it works. You take Xeloda, and after you’ve been on it a bit, you start developing changes in the skin on the palms of your hand and the soles of your feet. At first, I got weird brown spots on the palms of my hands, like really big freckles, and then the skin started to get really dry.

Then, when I went to Disneyland in January, I wore sensible shoes the whole time but still developed enormous blisters. They healed, but now the skin around my nails on my fingers and all along the bottom of my feet have become really peely. Like, every time I take a shower, my skin starts to slough off as soon as I get out of the shower. It’s alarmingly gross, like, seriously just disgusting amounts of dead skin just falling off.

And then a couple weekends back I started to get some neuropathy in both my hands and my feet. Neuropathy is like a numbing/pins and needs feeling, like your hands or feet fell asleep. Add that to the truly debilitating fatigue I’ve been having (it’s really hard to be an effective parent when you can’t get out of bed) and it was clear my Hand-Foot was getting worse.

#bestdocever had warned me of all this when I started on Xeloda, and recommended I use a cream with urea on my hands and feet, because there have been studies showing urea helps with the dry and peeling skin. So The Hubs bought me some Udderly Smooth (the container looks like a cow, and we call it “Mom’s Cow Lotion”), which I was using obsessively, and yet, the peeling continued. So I asked some friends who’ve been on Xeloda about what they used, and they recommended a cream called Revitaderm. It’s a whopping 40% urea. 

I put it on my hands and the dry dead skin started just sloughing off, like, immediately, like, the act of rubbing the lotion into my skin resulted in all this dead skin peeling off. Same with my feet. The skin underneath seems healthier and less peely, but holy hell, it’s really disgusting watching all that dead skin fall off. I keep joking about having leprosy. 

But the cream doesn’t help with the neuropathy, so I met with #bestdocever last week and we decided I should take an extra week off Xeloda (I am on a 2 weeks on, 1 week off schedule) and drop my dose. I had started on 8 pills a day, dropped to 7 in February, so now we’ll drop me to 6. That’s still a shitload of Xeloda, so I’m expecting my fatigue to continue, but I’m hopeful that the Hand-Foot will subside a bit. On this extra week off, the neuropathy has subsided, so that’s something. If it got worse and I couldn’t type, I’d lose my mind.

The thing with having terminal cancer is that nobody in their right mind would take a drug that keeps them in bed all day and makes their skin fall off–except that we know the alternative is, we die. This is why the experience of metastatic patients is so different than the experience of early stage patients. I don’t mean to minimize the experience of early stage patients because all cancer treatment is shitty and it leaves lifelong impacts, both physical and emotional. But for early stage patients, treatment ends. For us, treatment only ends when we die–and so we put up with pretty awful treatments, because the alternative is death. Xeloda is one of the gentlest chemotherapy available, and my side effects from here on out will only get worse. 

This is why I’m so passionate about research. I don’t want to live like this. I want to have energy, and I want my skin not to fall off, and I want my metster friends to not have diarrhea and need adult diapers. The only way to improve the quality of life of metastatic patients, and the only way for us to turn our disease from terminal to chronic, is to research new treatments for metastatic cancers. I know that scientists can help us live better, if only we’ll support their work.


So I’ve been exhausted all this week, like, lay in bed all day tired. So I finally texted #bestdocever and said “Seriously I’m so fucking tired.” (Yep, we text, and we swear. Reason #583 why he’s #bestdocever.) Turns out my hematocrit is 25.9 today, which explains the fatigue, and I’m having a transfusion tomorrow.

When I’m this fatigued, my feelings tend to wash over me in ways they don’t when I’m feeling well. A friend told me today that leaning into it when it washes over you is a good idea, and that’s really good advice, so here I am, writing this post, hoping that processing will make me feel better. Here is what I’m feeling right now.

I hate that I can’t do stuff for my family, like a simple chore like doing the dishes, because I’m too tired. I hate that when I do try to do a simple chore, I feel winded like I’ve just run a marathon. I hate that I smell terrible because once again I was too tired to take a shower–and I hate that after a shower, I need to lay back down because I’m exhausted from the effort of taking a simple shower.

And even more so than any of that, I hate how I feel emotionally when I’m so tired. I find myself hating the life I’m living. Last week I had my regularly scheduled brain MRI, and I wasn’t even that nervous about the results, because I knew my tumor markers were still dropping and I knew it would probably be fine (and it was)–but I hated having to go have another scan, another IV, another day when I was tired and yet had to drag myself out of bed, out of the house, to lay in machine for another half an hour. 

It washes over me how this is my life, this is going to be my life for the rest of my life, there will never be a time when I’m not getting scanned and poked at least every 3 months. This will go on for the rest of my life. I will always be living this half life, desperately trying to stay alive, not able to participate fully in the world, knowing all of this, all the treatment, will be futile someday.

I know I’ll feel better after the transfusion I’m having tomorrow, and that it’s really hard to live with the ongoing trauma of living with metastastic cancer, and it’s even harder when I’m physically down. I’m not into woo woo stuff about mind-body connections, but the reality is that when I’m physically weak, I have a lot more trouble being emotionally strong. Which is why it’s really just a rough time when I’m this fatigued.

I found myself apologizing to some friends for being pretty absent lately, and one of them said, “Don’t ever apologize to us again.” And when I heard that, I burst into tears, in a good way this time. I need to remind myself that my friends don’t expect me to be Superwoman. They know this shit is HARD and they’re OK with me not being that cancer patient who’s standing on top of a mountain being like “I refuse to let this slow me down.” That it’s perfect OK with them, and they’re not disappointed at all, when I can’t be that person. It’s a relief to know I’m not letting them down. 

The Hubs says the same thing, too, when I tell him how useless I feel. He points out that I DO contribute to the family even when I’m feeling so down, and that I’m not letting him down. That he knows I’m not perfect, and he loves me anyway. All this support is so powerful, and it keeps me going when I’m at a nadir.

That’s it, I’m done now. Processing over, letting go of my guilt, and resting and hoping tomorrow brings better things. Like blood and energy and a return to my sunny disposition.