Fuck Cancer

Personal News: Medical Update

by Betty Cracker| August 11, 202412:09 pm| 83 Comments

This post is in: Fuck Cancer, Open Threads

First, I want to thank y’all for making routine threads a place where I can join in discussions about politics, pets, hot dishes, etc., without being asked about my health. I know inquiries come from a place of caring, and I’m grateful for that. But it’s so nice to have a place where I can be normal, you know? Real life is far from normal these days, so I value that a great deal.

That said, I’ve been meaning to update y’all on how my treatment is going in this specially designated portion of the blog. The good news is I’m almost done with lengthy courses of chemo and radiation. The bad news is it’s exhausting and nauseating, and I can’t wait for it to be over.

Thanks to the generosity of this community, Bill was able to take a leave from work to shuttle me to appointments and look after me during the worst of it, which includes the past few weeks and the next couple upcoming. I’m a reasonably strong person and figured I could tough it out while he worked, but I was wrong. I don’t know how I would have made it through this shit without him!

In addition to feeling poisoned all the time, I’m shedding like an equatorial golden retriever. But so far, I still have a full head of hair. I’ve lost volume but not coverage. I’ve also lost a ton of weight. Before I got sick, I knew I needed to drop a few pounds, so I’m not displeased with this development. But I would not recommend this type of fat farm to anyone, including the convicted felon.

So, to focus on the positive, I’ll be done with treatment within the next couple of weeks, and I’m hoping when they stop pumping poison into my veins and irradiating me, the side effects will go away. Then we’ll see where we are and what’s next. Hoping you all are enjoying great health or getting the treatment you need if not. Thanks again for the support — and the space to forget my troubles for a minute.

Personal News: Medical UpdatePost + Comments (83)

One last thing, and then we’ll speak of it no more…

by Betty Cracker| May 23, 202412:07 pm| 167 Comments

This post is in: Fuck Cancer

I still don’t know what to say about how y’all banded together and helped me this week, aside from what I said earlier. (Thank you. I love you.) But maybe describing what it means to me will help you understand the magnitude of it, which is important.

I’ve been in good health and independent all my life, so this whole shitty medical crisis has been disorienting. It sucks to be seriously ill for all the obvious reasons, but it can also undermine your sense of self in unexpected ways — your role in your family, friend groups and community.

It can make you doubt your value. It can make you question whether you matter.

That sucks because who needs all that existential crap in addition to a horrible disease that is trying to kill you? But there it is.

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For me, the most wrenching thing is how my situation affects my people. I feel vaguely guilty about it, even though I certainly didn’t choose to get sick and embark on an expensive tour of regional healthcare facilities.

More than anything in the world, I’ve wanted to tell my family everything will be okay. But the road ahead is difficult and uncertain.

“My family will be okay, even if I’m not,” I told myself during sleepless nights, hoping it was true. Now, thanks to you, I know they will be okay, even if the car breaks down or the hot water heater blows up or the predicted “extraordinary hurricane season” drops a tree on our roof or whatever.

I can rest easy. That is the gift you gave me. Do you have any idea how valuable that is?

***

My husband has never really understood my internet habit. To him, the web is a tool – a gardening almanac, a repository of knowledge on topics that interest him, a how-to video hub.

He doesn’t think of it as a place to interact with people and form relationships. I suspect he thinks it’s weird that I and so many billions of others do.

But Bill got an inkling of how much online relationships can mean Monday as we sat on the porch listening to a ball game. I kept looking at my phone through tears while reading comments under my health status post. I had to read the thread in chapters because it was overwhelming, all the love and accumulated wisdom. It made me understand that yes, I really do matter to people beyond my immediate circle, just as they matter to me.

That thread was a gift all by itself. The shared humanity, the connections with those who have or are now experiencing their own life-threatening health crises. The stories of those who’d lost loved ones or seen them survive similar scenarios — all laid before me like a treasure in response to my news.

I was blown away, and I think by seeing how affected I was, Bill got a better idea of what my “internet people” mean to me — and I to them. I mentioned the blog might do a fundraiser, figured maybe we’d raise enough to replace the $9,500 insurance deductible we blew through in March.

***

Then y’all did what you did. I talked to John on the phone Wednesday morning, sitting here in my bathrobe in disbelief with tears and snot running down my face when I saw the amount raised. This community John built is real. I knew that already, of course.

Bill believes it now. The tangible portion of your gift changes his life too. After saying things like “Wait, what?!?!” and “For real?! ?!” — he is as astounded and grateful as I am. If there comes a time when I can’t communicate with you, he will make sure my friends here know why. He knows what we mean to each other.

***

I want to thank John for holding the fundraiser and WaterGirl for handling so many details related to it. I also thank her for coming up with the idea of a sidebar spot for my health-related stuff. I really want to keep that topic from dominating other threads. It’s important because we’ve still got issues to squabble over, elections to win and MAGA chodes to mock.

For example, Betsy McCaughey. Remember that anti-anything-that-might-benefit-the-non-rich hack and former NY (R) lieutenant governor? I’d forgotten the lying poltroon existed too, but she’s apparently letting feral grand-nieces cut her hair with safety scissors now:

Woman with a tragic haircut

Jesus.

So that’s all I have to say except stop making me cry, you fabulous goofballs. And thank you. And I love you.

One last thing, and then we’ll speak of it no more…Post + Comments (167)

Personal News: Valley of the Shadow

by Betty Cracker| May 20, 202410:14 am| 638 Comments

This post is in: Florida Fuckery, Fuck Cancer, Healthcare, World's Best Healthcare (If You Can Afford It), Talk About Whatever You Want

NOTE: Gonna leave this post pinned at the top for a bit so different “shifts” see it and no repetition is necessary. In the interim, thank you all from the bottom of my heart. I am and will continue reading every comment with laughter and tears and appreciation. I’ll have more to say about that later. But new content will be under this post as it’s published, and you should scroll down and read it and discuss the events of the day. After all, that’s why we’re here. :-)

I’ve been meaning to post a health update but approached the task with trepidation because I wasn’t sure how to start — it’s a lot. Since I tend toward annoying flippancy in fraught situations, let’s go with a good news/bad news format.

The good news is I’m likely to live long enough to vote AGAINST Trump (and whichever horrifying toady he horks up as running mate) and to vote FOR Joe Biden and Kamala Harris, reproductive freedom for Florida women and recreational pot for adults.

The bad news is maybe not because I’ve recently been diagnosed with an aggressive form of cancer. The median survival time for people with my diagnosis is less than two years.

Bummer!

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As I’ve vaguely alluded to here over the past several months, I’ve been dealing with vexing health issues since approximately the holidays. I wasn’t trying to be mysterious about it. At first my condition seemed much less dire, though I felt awful due to severe anemia.

I felt better once that was treated, but it took a long time to get a definitive idea of what’s wrong for several reasons that are too tiresome to recount here just now.

I hope y’all will understand that I don’t have any plans to provide much further detail on this. My illness necessarily consumes so much of my life already. I’d love to have one digital oasis, populated by friends (and frenemies), where it doesn’t dominate the conversation. This could be that place!

I’m surprised at how calm I feel about the whole thing. Maybe that’s because I’ve thought about death a lot, ever since I was a depressive, hypochondriac child.

I am also NOT a spiritual person, and it turns out there ARE atheists in foxholes. But I think mostly I’m at peace with the situation because I’ve had such a good run.

I’ve shared my life for nearly 30 years with one of the smartest, kindest, funniest men on the planet — who also plays piano like an angel! Together, we raised a thoughtful, brave and intelligent child who has a professional-grade bullshit detector and an enormous heart.

Then, when the nest was empty, we found our swampy fixer-upper on a river in a wilderness so that after work, we could fish (well, he fishes while I read), ride around in our beat-up boat with cocktails at sunset and watch birds, otters, alligators, deer, wild hogs and even an occasional rogue rhesus macaque. And dream of doing all that full time someday.

That’s all pretty good! And if it ends for me earlier than expected, I don’t believe that goodness is diminished.

I am not afraid of death, but I do dread suffering. My focus going forward is to survive while staying as comfortable as possible and minimizing the effect of my illness on my family.

So, that’s all I’ve got to say about that for now, aside from this: I haven’t given up. I’m getting treatment, which has been rather hellish so far. This summer is going to suck for me!

I hope the treatment is effective. I aspire to be among those with my diagnosis who get to stick around this crowded, increasingly hot, terrible and beautiful blue-green rock on a longer-term basis.

But I’m also a realist, so I’m sharing the news with y’all as I prefer to receive such information myself: straight up.

I’ll continue to pop into comments and put up posts as I’m able. Maybe even a lot or perhaps rarely; I don’t know yet. Living in the moment is all I have left. (In truth, it’s all any of us have. Ever.)

But I’ve been writing here for more than a dozen years now, so the blog — meaning you squabbling, irascible, magnificent bastids — are a part of my life and among my chosen tribe.

I almost added “for better or worse” to the end of that sentence. Speaking for myself, it’s definitely been for the better.

Peace & love,

BC

PS: Fuck cancer!

Personal News: Valley of the ShadowPost + Comments (638)

Claire is home

by David Anderson| February 12, 20218:14 am| 66 Comments

This post is in: Claire Updates, Fuck Cancer

My niece Claire was released from the hospital for the last time for this round of treatment earlier this week. She is at home. She is with her parents and her little sister and her grandma in a house that is mostly snowed in and overloaded with toys and books and presents. She is doing pretty well right now considering that she just finished up her 5th round of chemo. Her numbers are good to very good.

Her parents finished cleaning out the apartment on Wednesday and handed back the keys to the landlord a day early. They no longer have a place in Philly.

The Balloon-Juice Jackal Crash Pad was heavily used and greatly appreciated. It was a spot where Megan and Travis could sleep without listening to beeps. It was a spot where they could breathe. It was a spot where Megan and Travis could have their younger daughter come down and visit to see mom and her big sister. It was a refuge. Thank you!

Right now, the plan is fairly straightforward. Claire resumes normal on-line learning on Monday. She can probably win the first argument on where the family should order take-out once her appetite fully comes back and her stomach settles. She can play in the snow/ice/sleet that is supposed to be hitting her house today.

She will have monthly lab work. If the results are not scary, that is all she needs for several months and then she’ll get a check-in with her oncology team. If the results are scary, something happens and we don’t know what that is.

Claire is homePost + Comments (66)

Claire update

by David Anderson| January 29, 20214:45 pm| 38 Comments

This post is in: Claire Updates, Fuck Cancer

Good afternoon — I took today off as I have some PTO that expires/disappears soon if I did not use it. My morning involved testing out a new to me biscuit and breakfast place and then donating platelets. I’ve been giving platelets a couple of times per month since the summer as pediatric cancer patients like Claire need them. The Red Cross e-mails me every time they ship my platelets and I think that I’m part of a small group that are sending platelets to a particular patient as five of my last six donations have gone to the same, small hospital in the middle of nowhere.

Claire is doing well all things considered. She is in her fifth round of chemo and treatment at the moment. She is getting blood products a couple of times a week which has helped her tolerate the treatment. As far as I understand, her numbers range from being good to really good. This and the prior two rounds of treatment have been designed to blast out the unobserved and unobservable cancerous cells. Assuming the next few weeks go as anticipated, she should be released from the hospital in the middle of February.

And after that, she is in the watch, wait and closely monitor stage of her treatment. It will have been a very long and tough nine months for Claire and her family.

Right now, what Claire and plenty of kids like her need are blood donors. If you are capable of donating blood, please do so. You get to help Claire or someone like her out while also getting cookies. That is a good trade in my book.

Claire updatePost + Comments (38)

Claire update for the holidays

by David Anderson| December 23, 20209:14 am| 46 Comments

This post is in: Anderson On Health Insurance, Claire Updates, Fuck Cancer

Good morning —

Just a bit of good news. Claire got discharged from the hospital late on Monday night after her 4th round of chemo and treatment. As of last night, her appetite and energy is pretty good. She’ll get to spend, assuming no setbacks, at least through New Years at her house with her family. Santa will know where to find her.

From what I’ve been told 4th hand, Claire’s numbers are “good” and stable. I’m not sure what that means except it is far better than “bad” and “declining” or “not improving”. After the New Years’ she is due back to Philadelphia for her 5th round of first line treatment. I think the goal of the 3rd, 4th and 5th rounds of the first line treatment for her type of cancer is to find the hold-outs and 1 in a million cells that are still cancerous and kill them.

One of the things that has made her ability to tolerate these treatment rounds plausible has been blood transfusions. She has been getting blood products several times each cycle. A transfusion usually produces significant pain and symptom relief. Right now, blood is in short supply. Many centers that typically want to have a three to five day supply on hand are now operating with a twenty four to thirty six hour cushion. If you want to help Claire and plenty of other kids with cancer, see if you can give blood or platelets over the winter break. I’m signed up for another platelet session on January 3rd where I can watch a movie and make sure that someone else’s pain is alleviated.

Finally, I am still just blown away by all of your generosity. The apartment in Philly has been a godsend for Claire’s parents. My sister-in-law has a respite from the hospital to clear her head, get a good night’s sleep and decompress. That has been an incredible relief for her especially as they have not had to worry about the immediate financial toxicity of a cancer diagnosis that so many families need to face at the same time. Whenever I think about this, I tear up. So again, thank you.

Claire update for the holidaysPost + Comments (46)

Bone Marrow registration

by David Anderson| October 16, 20205:42 pm| 38 Comments

This post is in: Claire Updates, Fuck Cancer

For many pediatric cancer patients like Claire who have leukemia or other blood diseases, a bone marrow transplant becomes a critical part of their treatment. While Claire’s doctors hope to continue to rely only on chemotherapy for Claire’s treatments, changes in her condition and the threat of relapse in the months and years to come mean that needing a marrow transplant could become a reality. We do know that she does not have a matching family donor. So should she require a transplant she will have to rely on an unrelated donor and hope that one is available that matches her genetic makeup. In researching her condition and treatment, Megan and Travis learned a lot about the marrow registry and matching process and just how hard it is to find a genetic match. It’s a scary thought for them and it also made them think of all the families currently waiting to find a match.

With this incredible community rallying around Claire, we saw an opportunity to not only potentially help Claire but to help other patients in need, by hosting a virtual registry drive. Patients that do not have a matched family donor turn to Be The Match, also known as the National Bone Marrow Registry, to find a compatible donor.

One thing we were surprised to learn, and suspect many others don’t know, is that no one is tested to find out if they are a match to a specific patient. Anyone who submits their DNA is entered into the registry as a potential donor to anyone in need. The more people who join the registry, the greater the chance of finding a match for a patient.

Join the registry

Visit http://Join.BeTheMatch.org/ClaireStrong to learn more and join the registry. There are a few criteria to join the registry:

Be between the ages of 18 and 44 (once entered, individuals will stay on the registry until age 61)
Be willing to donate to anyone in need
Be in general good health

Less than 1% of people who join the registry will end up donating. The donation process is not painful and you could SAVE A LIFE.

My wife and I have gone through the registration process myself and it could not have been easier. You fill out a few questions online; receive a kit in the mail; rub a couple of swabs on the inside of your cheek and mail them back. That’s it! The first step is visiting http://Join.BeTheMatch.org/ClaireStrong

Spread the word!

Whether or not you are able to register you can still help out by sharing this campaign online encouraging others to register and share. There is a particular need for registry members of diverse backgrounds so the broader the outreach the better. Just share the link http://Join.BeTheMatch.org/ClaireStrong

Thank you for reading this long post and for your continued kindness to Claire and family. We would love to share a little of this energy with other families in similar situations. By using our unique Be The Match link, I’ll be able to update everyone on our campaign success. Thank you.

Bone Marrow registrationPost + Comments (38)