Can’t breathe

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

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. 


I should be writing about the San Antonio Breast Cancer Symposium that I attended this week. I learned things, I hugged people, I made new friends, I saw old ones–and we made our voices heard. But that’s not what’s on my heart today. Today, Maria is all I can think about.

Maria Carballo and I met at the Living Beyond Breast Cancer conference last year. She was funny and beautiful and sassy, and I immediately liked her. She was part of a group of us that tried to sneak into the ballroom dancing competition that was happening at the same hotel as the conference (we failed, but we all complimented the dancers on their amazing asses). She sat at the dinner table where we decided to do the die-in at the conference. 

And today she died. She was just 41.

I’ve written before about how much living with metastatic breast cancer is like having AIDS in the early 80’s. But today I’m really feeling it, how the band is marching on, while there is a crisis of women dying and dying and dying. I’ve had three friends die in the last three weeks. I have two more friends in hospice right now. 

And I can’t tell you how many people have told me and my friends this week not to piss off the researchers, not to be too loud, that they’re trying plenty hard enough, that we don’t want to alienate them. That we should be grateful we’re not in the radical mastectomy era anymore, that things are so much better than they used to be, that 6 months of extra life is a major success, that we should be grateful for those 6 months on a toxic treatment that leaves us unable to parent our children, unable to bear children at all. That we aren’t arguing strongly enough and that’s why we’re dying. That we should just join a clinical trial, that if we don’t we can’t expect any breakthroughs, even though we don’t actually qualify for any trials because we have brain mets and we’re too heavily pretreated, and even if we did, we don’t live in New York or Houston or Boston where most of the trials are. 

That there’s exciting research happening on our corpses.

So many excuses for why Maria is dead. Why Michelle is dead. Why Seporah is dead. Why Lisa is dead. Dead. Dead. Dead. Dead. Dead. Dead.

How many more of us have to die before someone does something to stop this? How many more tears must we shed before someone listens? When will the excuses and the patient-blaming end? When will there be a sense of urgency? When will all this death stop?

I don’t know how much more of this my heart can take before it’s permanently broken. Before I can’t pick myself up and keep fighting and fighting and begging for help.


How The Hubs Feels

The Hubs wrote this last night. I haven’t edited at all–this is purely his heart. I’d love it if you guys shared it around the interwebs.


Saturday, February 21, 2015

Susan G. Komen
5005 LBJ Freeway
Suite 250
Dallas, TX 75244

To whom it may concern,

I am writing to you asking that you change your focus of your organization and reallocate a large portion of those funds from that refocus to an under resourced area of research. The current Komen mission is focused on education and funding research. I would argue that the first part of the mission has been accomplished and that you need to focus more on the funding research. Everyone is aware of breast cancer. From the NFL wearing pink, the various products that you can buy that have pink ribbons on them to the flowing masses of people that participate in the Walk for the Cure. People are aware of it. They are so aware of it that it threatens to lose meaning or importance of it. My observations of it has that it has become a marketing and revenue generation business, but it feels like it is a business that has lost track of its mission. The statistics I’ve been able to find show that somewhere between 15%-20% of the funds generated by the Susan G. Komen for the Cure charity are spent on research. Using your organizations own statements in the past of “83 cents of every dollar…” that means that about 63% of your funding dollars are spend supporting the other missions then research. Your organization has won the education war. In my 38 years on this earth, I’ve seen a steady increase in awareness as well as society being engaged on the issue of breast cancer. People can talk about it. People are aware of it. They know it is a problem and they know people impacted by it. The mission has been accomplished. It is time to flip the numbers around. According to your own numbers, you spent 38% of the 2013 funds on education, and only 18% on research.
I implore you to switch your mission priorities around. The primary mission should be funding research now and not education. Research funding has been being cut left and right at all levels in science, and while the amount of money that Komen is providing in grants has been up, the percentages are not, or at least not that I have been able to find reference material on. You should instead refocus much of those education dollars on research for stage IV and prevention of cancer progression from the various stages. That we need more then treatments and that while are quick to point out 5 year survival rate for early-stage breast cancer are excellent, but that is not enough. What of those with stage three and stage four? What of the why’s and how’s of the sometimes rapid progression from the various stages? That is the hard work. That is where lives are lost and families destroyed. That is where the need is greatest, where research dollars could have significant impact and spur research in those areas of the greatest impact. Think of what things would be like if Komen came out and said “we are going to spend 45% of the money brought in on research…” You would be effectively tripling the amount Komen spends on research. Not only that, because Komen is one of many and it is in a leadership position, it would send a clear signal of what the priority should be.
My wife has stage four breast cancer. She found a lump in March of 2014, and within a week our families life was upended as the diagnosis went from stage two, to stage three and after MRI’s, brain scans and PET imaging settled on stage four. Since then she has had two different rounds of chemo, a single mastectomy and is getting additional hormone and bone therapy. She recently had another PET scan that showed what is likely cancer in the marrow of her bone of her arm and on T11/12 of her vertebrae where there was none before. She is 38, a wife and mother of a seven year old boy and a three year old girl. She is quite possibly the strongest person I’ve known in my life and I have been there through all of this with her. We both know the statistics and the numbers about the cancer details and the impact that her young age has on the 5 year survivorship rates. The hardest thing on her hasn’t been surgery, the treatments, giving up working to focus on treatment or the doctor appointments. It hasn’t been losing her hair, the exhaustion or the side effects of the treatments. It has been the likelihood that she might never get to see our son graduate elementary school, or high school or college. What makes the tears flow is that she will likely never see our daughter start school. That statistically, she will miss all those moments of their lives and never know her children as adults. That her and I will not grow old together. And so you see, this letter is not the ramblings of someone who does not understand the situation, but one of someone who is all too aware of the realities of what stage four cancer means. That there is no cure and that the only way out of stage four cancer is feet first. That at some day, and I pray this day never comes, that my lovely wife will join the statistics for a final time of being one of the 40,000 women in the US who die from breast cancer every year.
So again, I implore you. Change your mission. Change your focus. Change the math and the equation. Spend more, not just a little bit more, but a lot more on research. Do the hard work and lead. Empower science and medicine to find a way. Celebrate the win of education, but fight the fight that is killing people every day. Fight the fight to give people more time and not just early stage, but late stage as well. So that even if my wife dies from breast cancer that maybe out there in the world there will be someone who benefited from the change of focus. That even if she dies, that maybe someone else who got a new experimental treatment derived from research will live, and that her family/friends/husband/children will be able to hold her close and experience all the things in life that they are supposed to together.


James Hawkins Caldwell III

People Say The Nicest Things When You’re Dying

Since my diagnosis, I’ve gotten some amazing gifts, including the coolest gift ever, but I’ve also gotten notes from people with incredibly kind words. One friend shared that she would probably never have become the strong feminist she is if she hadn’t met me. Another said that my non-judgy-ness got her through a very rough patch in her motherhood. One of my coworkers said at my retirement party that I am the best lawyer he’s ever worked with. I had no idea these folks felt that way, until they wrote me those notes. It means a lot to me that I’d touched their lives.

The thing is, why DIDN’T I know they felt that way? It’s because we don’t usually say these things to people until they’re dying. And then suddenly, we forget all the bad shit, and just focus on the good. You forget the million times I stuck my foot in my mouth or was catty or dropped the ball and didn’t show up to help when you needed it, and you remember the time I got you drunk when your boyfriend dumped you and told you that you were so money and you didn’t even know it.

I’m not dying today. As I told my oncologist the other day, I’m feeling the best I have since this shitshow began. Except, I kind of am dying, just in very very very slow motion. And that’s why people send me these notes saying how much they love me and what I mean to them, when they haven’t ever done anything like that before–because I have a terminal illness.

But the thing I’ve learned from having that terminal illness is this–we’re all dying. All of us. Not one of us is going to get out of life alive. We just don’t like to think about it, because we hope it’s so far off in the future, but one day you will be dead. As Bill Shatner said, “This may come as news, but…you’re gonna die. You’re gonna die. By the time you hear this, I may well be dead. And you, my friend, might be next. ‘Cause, we’re all gonna die.”

I’m gonna say this. I think it’s crap that we have to wait until we’re aware that we’re gonna die, before people tell us all these nice things about what we mean to them. That’s total fucking bullshit, you guys. Seriously, this should not be a perk of having cancer, to have people tell you that you’re awesome. It should happen every day. You should be going out and telling the people who have meant something to you, who have been there for you when you needed it, that they’re awesome and that you love them. I should be doing it too, and I haven’t been, but I’m going to now. Because, we’re all gonna die.

Homework: every day, say something nice to someone who has meant something to you. I’m not saying you should look up that ex-boyfriend who treated you like shit–I’m saying, the people in your life who you love, but you haven’t told them so, you should tell them so. Tell them thank you. Tell them what you admire about them. Imagine they’re dying–because really, they are–and give yourself license to forget the dumb stuff for a minute, and appreciate the good. It’s gonna make them feel good, and it’s gonna make you feel good too.