My angry venting update
Hello, friends and fam. Here's the abridged update. If you want more details, see below.
The tumors grew on the April/May chemo treatment and started affecting my intestines and bladder. Instead of surgery, we decided to try another chemo in June in the hopes it could contain things and make the surgery more successful at clearing the disease. A combo of effects from the chemo and tumors hospitalized me twice at the end of June/early July. We just scheduled open abdominal surgery for July 13. Hopefully I can get back on systemic treatment (chemo/clinical trial) about 4 weeks post op.
--
This has been an incredibly rough month for me, definitely the lowest points since the diagnosis. None of the recurrent tumors had caused significant symptoms for me until now: partial bowel obstructions, urinary tract infection, severe bladder pain, fluid collection, risks of tumor bleeding, lots of pressure and pain in pelvis, inability to eat solid food (I've lost over 20 lbs since the end of May). And since my body is in such a tough place, I had a difficult response to a chemo that usually doesn't send people to the hospital. Anyway, I am feeling sad, angry, spent, frustrated, hungry, and scared. I know my doctors are doing all they can. They also don't have the answers for how to control this disease. Apparently I'm a unique case in an already very rare cancer. The rapidity of recurrence, speed of growth, and resistance to chemo make for a terrible combo.
As I have shared before, I don't like to see the cancer as an enemy I'm trying to beat, because I don't want to be at war with my own body. But the recent metaphor that is coming up for me is that cancer is a thief. Not a thief who is taking things because they are under resourced by our unjust society, but a thief who is taking things with no justification. The impact the cancer has had in the past month just feels so violating and wrong. We had to cancel our summer vacation in the Adirondacks. I’ve missed holiday weekends with family and visiting friends because I was stuck in the hospital. I’ve been excited about campaigns at work that I have to step away from. I’ll miss Fiona’s 6th bday party with her friends. I *might* lose my bladder in the surgery. And my hair is falling out again from the recent chemo. I don’t know if I’ll lose it all, but it’s so hard for it to happen just a year after it started growing back.
I really appreciate everyone’s love and support and also would like to share that at this moment I don’t really need to hear how strong I am, how I can get through this, how I should take things day by day, and be positive. In general, I find it more helpful for people to listen and acknowledge my feelings, whatever they might be.
Liam is really holding things down, amazing with the kids when I’m out of commission, and getting into gardening. He removed this massive prickly tick-harboring bush from our backyard because I asked him to. ❤️ Of course all of this is hard on me, but it’s also hard on the “invisible patients” (partners of cancer survivors) who carry so much.
And some dear friends and family have been able to help a lot while I was hospitalized.
I did have some major highlights the past 6 weeks or so, including wonderful trips to Carlisle, Pittsburgh, and Connecticut. I was fortunately able to do those while my health was somewhat stable, though always precarious. It’s very rejuvenating to get time with people I love.
I know people always want to know how to help. I understand it is so hard to have no control over something terrible happening to someone you care about. We now have college funds for our kids, so if you’d like to donate to those, that would be great. Info is here. And I like getting sweet notes and hearing about what’s going on in people’s lives. Or sharing memories of times we’ve had together.
Thank you all for listening and for witnessing the horror that is uterine leiomyosarcoma. Some joyful photos are below.
love and hugs,
Molly
Fiona graduates kindergarten!
View of rainbow over downtown Cbus from the hospital
Newie!
In the pond at Merry’s house
Mountain laurel in bloom
Fi’s fave restaurant
Vee and James!
Crazy hair at the carnival!
Auntie Libba!
Molly, this is so unfair. You know that, you have every right to be angry, demoralized and hitting rock-bottom. I wish more than anything in the world I had the power to make this go away. Thank you for taking the time to share. I hope that on some level it brings a moment of peace or release, or an opportunity to process. Love you and your beautiful family as always.
ReplyDeleteI think I saw that same 🌈 that day! Thank you for all these photos this update, and for sharing this. You have every right in the world ever to be angry, and sad and scared and absolutely all of it. I’m so pissed you don’t get to go to the Adirondacks, that you have had to feel so horrifically bad, that you can’t eat and you have to lose your hair again and you have to miss out on so much that you want to be doing. I think anger can be a very life-affirming emotion. I really hope that this surgery gives you some reprieve, and the chance for strength for the new treatment. I love you and Liam and the Fiona and Nora—we are sending you all our love and strength and moments of 🌈 💗-Molly F
ReplyDeleteFuck this bullshit patriarchal cancer down to its very last mother fucking bullshit abhorrent goddamn piece of fucking bullshit mother fucking crap cell for fucking not understanding (in a sentient or sentient-adjacent manner) that it doesn’t need to fucking replicate, that you are done replicating cells from your goddam mother-fucking uterus bc for fuck’s sake, you don’t even have a fucking uterus anymore even, and for fuck’s sake everything is fine we have Fi and Newie and we are good now you asshole rogue organ-cell abomination, you! But not in the eat that conflates this with Molly The Great Being because we want those healthy Molly Cells to replicate and, if we are all being honest, to kind of outlive us all.
ReplyDelete- Emilie Girlin
Molly, this news is awful. Your family absolutely is adorable. Love you all.
ReplyDeleteMolly, thank you so much for putting this into the world, for sharing your experience and your truth with so much thoughtfulness and openness and no bullshit clichés. Thank you for this gift. At the same time, I am so very immensely sorry, thoroughly devastated that this is happening to you. It is fucking unfair and brutal.
ReplyDelete