All this...
and bone mets too. Now I know why my knee hurts.
I e-mailed my primary yesterday, asking for pain relief. She wrote back asking where the knee hurt. I told her, and she ordered an X-ray. (Now, she could have done this when she first diagnosed the strained ligament—just to see what else could be causing pain—but alas.)
A and I were in the car on the way to UCSF, when her e-mail came in. She told me what it was, and to stay completely off the leg.
Thank goodness for smartphones, because I was able to discuss it with Dr. Wonderful at UCSF. Without seeing films, he recommended radiation. I’ve already irradiated the most important thing to me, so I know I can do this. It sounds positively easy.
[Overall treatment plan with them: confirming that my brain mets are gamma-knifeable (so far they say they are!), and starting me on ipi soon. I have a PET and a brain MRI (and now one of my knee) next week.]
My primary sent another e-mail, saying that the orthopedist she spoke to recommended a knee replacement. I got freaked because of the healing time, and the level of care I would need. A works full time, and needs to. The pain from knee replacements is legendary; I don’t want to be miserable for weeks or months if I’m going to die anyway. I really, really want to walk without pain again.
I e-mailed Dr. Wonderful when I got home. He added the knee MRI to the scans I’m already getting, and said he wouldn’t jump to replacement. Which made me feel a whole lot better. He is... cavalier but not careless. Willing to go out on all kinds of limbs—but not willing to inflict pointless suffering. A compassionate mad scientist. Contagiously hopeful. I trust him. And I just plain don’t want to be mobility-disabled, in excruciating pain, and miserable, unless and until I need to. It certainly wouldn’t be curative. If I were just old and worn out, that would be one thing. I don’t know if I’d live past the healing.
In other news, I took a 2 ½ hour nap when we got home—for the first time in forever. After throwing up Vicodin intermittently all day. So now I need another form of pain relief... but I feel both groggy and rested, which is oddly nice.
And I have company tomorrow. Life, as it is, goes on.
Was I this calm earlier? Hell no. I got really quiet and was crying in the car. I feel really bad for what I’ve done to my body—demanding that my leg do things it couldn’t. I’m sad that the cancer has spread. But I watch myself sprout new soft-tissue tumors all the time. And after invading my brain, it’s honestly hard to see how it can hurt me. I miss walking, and I don’t know whether I’ll get to do it again. I’m in physical pain. But psychologically and spiritually? After awhile, it’s just like, “fuck it.” I can deal with this too.
20 comments:
A compassionate mad scientist. Sounds like a damn good doctor to me! You're in my constant prayers.
i hope you can walk again, painlessly. :(
I like Dr. Wonderful.
Lord, hear our prayers.
So glad you found Dr. Mad Scientist. Knee replacement what is she thinking??? Hello - let's deal with the other stuff first. Talk about compartmentalized thought processes. Prayers for the process ahead.
I'll help you cry and I'll help you pray and there is always the love that I am sending you.
Praying here.
I like the way you describe the doctor. He sounds like exactly what I'd wish for you. (((you)))
אל נא רפה נא לח El na raphah na lah. Hear Holy One, hear and heal her. (The prayer for Miriam when she was diseased.)
Prayers. Hugs. I'm a little short on words at the moment.
Glad to hear you are letting yourself cry, scream, shout, do whatever. Ultimately it leads to peace and calm. God bless you, Kirsten. My prayers remain with you. Thank you for sharing your brave journey.
More prayers.
Bless your sense of humor, Kirstin.
I remember the "fuck it" stage. It was always one more thing. Yes, bless your sense of humor. I believe my sense of rather twisted humor saved my life.
You are in my prayers and I think of you often.
Sending love and prayers and a loud MEOW from +Maya.
The clarity of your writing is such a generous gift. You are in a monumental crisis, and you keep talking to us - so luminously, so resolutely - and I am permanently grateful.
Also: you are allowed to demand effective pain relief. There's a lot more out there than Vicodin, and the various options include major narcotics, combinations of drugs, and off-label uses. If you are having trouble getting someone to listen, you might want to request a palliative care consult. Someone can work with you to maximize your mental acuity and your physical comfort.
Pain relief doesn't usually involve addiction, and even if it did, I would happily sit with you in the almost-most perfect of outcomes: you go into full remission, and you have a ferocious drug habit. High fives all around, and I will help you kick your habit. It'll be a laff riot. We'll order pizza and braid our hair (or paint our scalps) and polish our nails.
Prayers for your complete healing.
Fuck it indeed... sometimes those words are the only ones that can say it, as inelegant as they are. Prayers for some sort of pain meds and tell them to FI if they are worried about addiction. xoxoxo
Kirstin, I continue to pray with you daily. If you are coming to UCSF, even for a brief appt., i'd love to see you. Let me know if you'd like a visit or a lunch together.
xo
Will
Thank you, everyone. Will, I'd love that! I'll keep you posted when my visits are.
Dear Kirstin -
I agree with Ann - surely other things come first?
When you do get around to replacing the knee, it likely won't be as bad as you seem to have heard. You're a tough, grounded person and in my exp. with surgeries like that (I've had 2 knee replacements so far, and another one sched. this summer), the fear of the pain is much worse than the actual thing.
It's not something to look forward to, but it's by no means unbearable. The first couple weeks are the hardest, but you're on a pain pump while you're in the hospital and they send you home with an ice therapy machine that will help a great deal.
In fact, you might want to see if your doc will prescribe one for you now--they reduce much of the pain from inflammation and lessen your need for pain meds. You just have to stock up on bagged ice, as they need refilling every 6-8 hours. The Bledsoe brand has the largest capacity, if you can choose.
On pain meds, do you see a pain doc? There are a lot more choices than Vicodin, which does tend to make people nauseous.
Methadone is used off label for pain; it's cheap and covers 4 out of 5 pain types (all but nerve pain).
Fentanyl comes in a patch form, which lasts 3 days per patch for most people, so you don't have to wake up to take pills and your pain stays covered more evenly.
There are also pain pumps that work more or less like insulin pumps and you can give yourself a bolus of medicine when you have breakthrough pain.
Don't settle for Vicodin, please--you really shouldn't have to put up with the nausea--and don't worry about addiction, either. Magatha is right--unless they are already genetically/psych. vulnerable to addiction, people who take pain meds for pain are only physically addicted to them. Once you don't need the drug for pain, your body's dependence can be ended by weaning off the drug slowly, with limited side effects.
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