#bestdocever

Can’t breathe

Posted on by Beth Caldwell

It’s weird not being able to breathe. I mean, I CAN breathe, but if I have to move around move at all, then I can’t breathe. Like, going to the bathroom to go pee, which is a few feet from my bed, leaves me completely out of breath. It basically sucks. We’re working on getting what appears to be a shitty company called Quest to get me some oxygen at home but because they’re taking for-fucking-ever to get around to it, I’m borrowing a tank from #bestdocever’s office. Having an oxygen tank helps a TON.

On Monday, I had my HLA platelets. Over the weekend, they’d dropped to 20K. After the infusion, they’d gone up to the 40s. Whopdiedoo. Oh, and it turned out that my hematocrit was 19, which is also fucking low. So, I had a transfusion, 2 bags of blood. I haven’t seen the results after the transfusion, so I’m not sure how much the transfusion helped. Last time, it raised my hematocrit from 20 into the 30’s, so let’s hope we see a similar result.

This whole thing sucks. It just does. It sucks that I can’t breathe. It sucks that not being able to breathe keeps me in bed, It sucks that the progress that I’d made cognitively is now sliding backwards because I’m so tired, my brain isn’t functioning right. It sucks that I slept all day at the hospital during my transfusion. It sucks seeing the terror in J’s eyes every time I gasp for air. It just fucking sucks.

Today we’re hoping to have an answer about what to do about my goddamn lung—maybe a stent in there to open up my lung a bit, so I can breathe more? Maybe something else?

This disease fucking sucks. 

UPDATE: As of 12:30PM today, I have an oxygen compressor, as well as some portable bottles to take to doctor appointments. Yay!!! Holy cow, does oxygen make me feel better. More human, my brain actually functioning, not coughing so much…it’s seriously the bomb. O2, I love you.

I’m dying

Posted on by Beth Caldwell

Today we met with #bestdocever and we talked about how I am doing health wise. The reality is this: I am dying. My brain has bled from the mets that are in my brain, and I’m still experiencing problems from those bleeds. We are having them treated with whole brain radiation, which is hopefully killing them, but will know when we are finished with radiation how that went. This course of radiation should be complete in the middle of October. In September I spent several days in the hospital with pneumonia and sepsis from the pneumonia. We had to leverage morphine to combat the cough so that I could get out of the hospital. The X-ray in the hospital showed that 1/3 of my right upper lung was white from pneumonia. I had to take time to recover to try to breath. 2 weeks later, I’ve had another lung x-ray that still didn’t look good. It got better, but now its back. It makes me tired a lot. It’s exhausting walking to the car, the bathroom and I ride around in a wheel chair. I find myself winded a lot. We don’t know if this will get better, but I’m able to get around without coughing too badly. 

 My platelets have remained extremely low, 150k-300k is the normal range. Mine have been as low as 8k and as high as 52k out of the ICU. When my platelets are below 20k, I’m not allowed to have whole brain radiation, so I’m having almost daily infusions of platelets to raise the level high enough to make that bar of 20. Starting this week, I’ll have HLA platelets twice a week that will hopefully do a better job of raising my platelet count and allow continued radiation. If they work, great, if not, I’ll go back to having daily infusions of platelets. My overall blood chemistry has been off for weeks, so I’m not able to have any chemo right now. Chemo goes after fast dividing cells, which hits cancer, but also my bone marrow. Until my bone marrow recovers, my overall blood counts will be off (white blood cells, red blood cells, platelets, etc.).

 When I talk to #bestdocever today, we talked about the amount of time left. He told me that that he thinks I have about 2-4 months with brain radiation and no further treatment. We have discussed Death with Dignity which is an option in our state. I’m grateful to have a doctor who supports what ever I need, whither I choose that to be Death with Dignity or other options. 

 I don’t want to die. I don’t want have the conversation with the children about me dying. I don’t want to have to tell them that Mommy will die soon. I’m in denial. But someday, I’ll have a conversation with them and I have to decide how to make this work. In the mean time, there so much advocacy work I wish I could accomplish; there is so much work that our community needs. When I ask myself “what advocacy to do for our community?” I think about Jenny Grimes, who helped found MetUp with me, and I ask myself “Will this help save Jenny’s life?” If the advocacy will help keep people like Jenny alive, then the advocacy is worth doing. If it won’t help keep people alive, then it isn’t worth doing. 

 I can’t do the work anymore given how sick I am. I hope others in our community will remember that the only important thing they can do as advocates; the thing that is most important, is keeping people alive. I know its not easy, but it HAS TO BE DONE. It has to. I’ll do my best, as time goes on, to talk about the life I’m having to live. I can’t share my story all the time, every day, but I’ll keep doing what I can. I’ll hope that somehow I’ll get better. And if I can’t, I’ll live the life I have as best I can. 

 I’m grateful to all of you for supporting me, and I wish, oh how I wish, things could be different. I love all of you. 

Denial

Posted on by Beth Caldwell

My insurance company, the federal employee Blue Cross Blue Shielf plan aka FEP Blue, denied the drugs for my combination therapy. They’ll pay for doxil without even a preauthorization necessary, but they denied authorization for both of the immunotherapy drugs. We went with Avastin over the cabozatinib hoping they’d approve it, but they didn’t. 

So, now we appeal. It took a week for FEP Blue to send me the denial letter for the trametinib, and because it’s an oral drug, I have to be the one to file the appeal, so we couldn’t get started on that process until this week. The Avastin appeal has to be filed by #bestdocever and he didn’t get the denial until this week either. Because it’s not like it’s important to get this information quickly when the patient has terminal cancer.

I’m very grateful to have the team at Avera in my corner right now. Their patient advocate has written tons of these appeal letters, so she’s helping out with the appeal process. She’s also appling to Genentech (maker of Avastin) and Novartis (maker of trametinib) on my behalf to seek support via their patient assistance programs. I’m hopeful we’ll be able to get them to help without me going through the charade of legally divorcing my husband so I fit under their income caps.

Here’s the thing. When I look at the data on this treatment approach, and I see that the 30% of patients who couldn’t get combination therapy are all dead, and that 93% of the patients who got combination therapy are alive? Yeah, I don’t just see numbers. I see people. I see my friends. I see Michelle and Jill and Holley and Carolyn and Sarita and Adrian and Ishuan and Jean and Vickie and Jody and Maria and and and…and I think “What if they lived long enough for combination therapy? Would they be alive right now?”

I’m not gonna lie, I’m pretty depressed right now. I’m putting on a brave face most of the time, but it’s not fatigue keeping me in bed right now. It’s a sense that I’m fighting an uphill battle to stay alive. And I can’t help thinking, if it’s this hard for me, an attorney who knows how to navigate systems and has the ability to demand the best treatments, what hope is there for the broader cancer community to stay alive? What hope is there for my friends who are too sick to fight their insurance companies? 

When healthcare decisions are made based on costs and not on saving lives, this is the outcome. We see it happening all over the world, not just here in the US–talk to anyone in the UK about how NICE has made it impossible for them to get access to the cutting edge drugs that are standard of care in the US. But here the disparities between rich and poor, between savvy and unsavvy consumers, feel particularly cruel and despicable. It especially hurts when you realize that the annual cost of my drugs is about the same as one day of pay for an insurance company CEO. 

Does all this make you angry? Does it make you want to help? Good. It SHOULD make you angry. It SHOULD make you want to help. Here’s what I need from you. I want you to share this blog post around social media. Post it on the FEP Blue Facebook page. Tweet it at @fepblue on Twitter. And use the hashtag #SaveBeth. 

Tell them what you think of their decision to deny me the combination therapy that could keep me alive long enough to see The Boy start middle school. Tell them what you think of their business model that puts profits ahead of patient lives. Tell them that I’m not ready to die. Tell them that I deserve to live. Beg them for my life. 

Bacon and bourbon cured my cancer

Posted on by Beth Caldwell

That headline is a lie, of course. My cancer will never be cured. But apparently it CAN be beaten back so much that I have NO EVIDENCE OF DISEASE!!! ALL CAPS FREAK OUT!!!

I had a PET scan on Monday with results due at an appointment with #bestdocever on Friday. Then Holley Kitchen died on Tuesday. If you missed her video that went viral, go watch it. She had such a beautiful spirit, and it gutted me when she died, leaving behind two boys, the youngest a 4 year old…just like The Girl. So, I texted #bestdocever and said “Holley Kitchen died today, her youngest is 4. Tell me that won’t be me.” And he texted back, “Naw, I have good news for you on Friday.” 

So, Friday comes around, and I go to the appointment. And we talk about my conversation with Joan Lunden, and the meeting I had the day before at The Hutch with other breast cancer advocates, and he gives me my check up and asks about my side effects from Xeloda, which at this point are fatigue (my constant companion) and looking tanned and freckled. So, pretty minimal.

Then #bestdocever says “I guess we should talk about your PET report. You know, unless you don’t want to.” And I said, “Well, you said it was good news.” And he said, “It’s OK.” And I was like, “Oh. So, just sort of good news, then.” And he said, “I’m kidding, it’s amazing.”

And we went through the report section by section, and each one said things like “metastatic lesions resolved” and “no longer any pathological FDG uptake.” In fact, my bone tumors aren’t just dead, the bones appear to be healing. And he carefully went through the liver section of the report, and said that he’d spoken in detail with the radiologist because he wanted to say I was NED, but wanted to make sure the spots on my liver really aren’t cancerous anymore. And the radiologist assured him that they weren’t. At this point the word “NED” was swimming in my brain…and as we got to the end of the report, I said, “So I’m NED?” And he said “Yep, you’re NED.”

As I was leaving, I told #bestdocever I was especially surprised about my liver because I’d been on a cruise the week before and frankly, I drank a lot, way more than usual. And he wisecracked, “Well that bourbon must be working, keep it up.” I also ate a lot of bacon. So I’m going with the theory that eating a lot of bacon and drinking a lot of bourbon will cure cancer. It’s as good a theory as black salve, drinking breast milk, or eating a lot of curry, amiright?

I honestly never thought I’d get there. #bestdocever had said at the start of this shitshow that NED was his goal for me, but I really didn’t think it would happen, especially after all that progression last spring. I’m still in shock. I knew Xeloda is a drug that people can have exceptional responses to, but I never believed I’d have THIS exceptional of a response. I feel like I’ve climbed back up the cliff a bit. It’s both thrilling and terrifying. But mostly thrilling. And it’s the first time since I was diagnosed that I’ve truly seen The Hubs happy, which makes my heart sing.

How long do I get to dance with NED? There’s no way to know. NED means my cancer is too small to see on a scan, but it doesn’t mean it’s totally gone. Someday it’ll come roaring back. But not today. Not today. Today we dance.

Memory

Posted on by Beth Caldwell

I’ve lost my short term memory. Let me give an example of what this is like: the other day, I spent a half an hour looking for my warm coat, the one I get compliments on every time I wear it (thanks, ModCloth–secret of all my fashion success), and still couldn’t find it, so I gave up and went out with my raincoat instead and was cold all day. I’d hung my coat in the bathroom, not its usual place, and so I couldn’t find it. Could. Not. Find. It. The Boy spotted it that evening or I’d probably still be looking for it.

I now have to write everything down or I’ll forget about it. Thank goodness for technology–if I didn’t have a calendar I could check every morning to remember what my plans for the day are, I’d miss every doctor appointment, every phone call with a reporter, every lunch with a friend. If I don’t immediately respond to a text, I’ll forget I received it and never respond at all. I’ve had to warn everyone in my life that I’m not ignoring them on purpose, that it’s not a Seattle No, it’s just that I can’t remember anything.

I talked to #bestdocever about it, and he thinks it’s chemo brain from the carboplatin I was on this summer. I fucking hate carboplatin. It ate my whole summer. It’s left me still needing blood transfusions from time to time because it gutted out my bone marrow and I keep getting extreme fatigue from having low red blood counts. And then there’s the chemo brain. 

It’s scary not being able to remember anything that’s just happened. It’s not like going into a room and forgetting why you went in there–that happens to everyone as they age, and I can joke about it. No, this is something more insidious. It feels like it’s changing my personality. I used to be so on top of things, but now…in fact, I just told The Hubs something and he said, “Yeah, you told me that yesterday.” And I don’t remember telling him, at all. I’m probably that annoying person at parties who tells the same story over and over again, and I don’t even know it.

The good news is, #bestdocever thinks it’ll get better the further I get from the carboplatin. It takes 6-12 months for it to improve, if it’s going to improve. But that “if” is scary and I have plenty of friends for whom it never improved. The collateral damage of cancer treatment is lasting. It’s brutal and nasty and so incredibly unfair, especially for those of us who are going to die anyway, and the treatment is only buying us time, at a terrible cost.

Science: please help us. We’re suffering. Please find us better treatments, so we don’t have to live and die this way.

All In The Family

Posted on by Beth Caldwell

Guess what, you guys? My mom got diagnosed with breast cancer. No, that’s not some kind of sick joke. I know I have a dark sense of humor, but not that dark. Although apparently the universe’s sense of humor IS that dark. Remember how I had genetic testing done and I was negative for ALL the gazillion genetic mutations linked to cancer that they tested me for? Uh huh. We’re actually just that unlucky in my family, and cancer is just that big of an asshole. You can’t even make this shit up.

So far, her cancer looks to be stage 2, no lymph involvement. Notice I didn’t say “only stage 2.” Because ALL CANCER FUCKING SUCKS. It’s not like chemo is less horrible when your tumor is smaller. I will say, though, that as someone whose mother died of metastatic melanoma, and whose daughter will die of metastatic breast cancer, and whose brother died of bladder cancer, I mean, you can imagine how freaked out my mom is, and my dad, and me, and my sister, and her sister. We all know what cancer looks like: it looks Not Good.

Still, one of the few silver linings to having a daughter who’s got terminal cancer…shit, I can’t even pretend like this is a silver lining, that’s absurd. One of the “well, at least this tiny part of it is marginally less awful” things about getting cancer when your daughter already has terminal cancer is that your daughter knows exactly what to do, and who to call. Which is why I’d like to take a moment now to write about my oncologist, and his staff. You guys, I’ve talked about him before and said how awesome he is, and if you follow me on Twitter, you’ll see me using the hashtag #bestdocever when I talk about him. All that praise is probably embarassing to him, but it will pale in comparison to the bragging about him that I’m about to do. Sorry/not sorry, #bestdocever.

When my mom told me she’d found a lump and they’d done a biopsy on it, I immediately texted my oncologist (yes, we text–what, you don’t text with your oncologist? You probably don’t hang out on the weekends with yours and his wife either, do you? Yeah, that’s a shame. Cough cough #bestdocever) and told him what was up and asked if he’d squeeze her in for an appointment if the biopsy came back positive. And of course he said he would. Then he texted to ask if she ended up needing a breast surgeon, who I’d want her to see, and I told him I’d want her to see the one who did my mastectomy, because I really liked her, and he said the scheduling would be tricky (it can be hard to get initial appointments quickly with her) but he’d use his influence to make it happen.

A few days later when the biopsy results came in, I called my oncologist’s office, told them the situation, and his awesome receptionist…hold on, because seriously, that word doesn’t even begin to explain what she does. She figures out billing questions, makes sure scans get scheduled, deals with scheduling snafus–she’s a goddamn genius. Anyway, when I talked to her at 3PM, she set up an appointment for my mom the very next day. No lie. And of course, while being amazingly efficient, she was also kind on the phone. It seems like a small thing, having an appointment scheduled quickly, having someone be kind on the phone. But when you’re in the midst of a shitshow like a new cancer diagnosis, it just means SO MUCH.

So, when we saw my…I mean OUR oncologist, he explained her cancer to her just as clearly as he’d explained mine to me, took the time to answer all her questions just like he does with me, and had already emailed the surgeon I’d seen to make sure my mom could get an appointment with her within a week. He’d also sent in a referral for a breast MRI. All of this less than 24 hours after we’d set up the appointment with him, and after having spent the previous night at the hospital with another patient until almost midnight.

HASHTAG BEST. DOC. EVER. 

How am I feeling about my mom getting cancer, you ask? I’m pissed–how much ridiculous trauma can one family go through?!?!–and scared. Although I know my mom is in good hands and that her prognosis is good, I mean, how can you NOT be scared when your mom gets cancer? I also know what’s in store for her, in a way that most people who haven’t been through cancer treatment don’t, and I wouldn’t wish cancer treatment on my worst enemy, let alone my mom. It’s going to suck for her, and I don’t want her to suffer. But she will, as everyone who goes through treatment does.

Sometimes people ask me why I’m so committed to getting more research done on metastatic breast cancer, knowing that I’m not likely to live long enough to benefit from it. Well that’s easy to answer now: because I don’t want my mom to die of breast cancer. I want her cancer to be gone and never come back, and if it does come back, I want there to be better treatments than just slash/burn/poison. I want her to be there when my kids get married, and maybe research will help make that happen. It’s always been personal for me, but it’s even more personal now.