Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Cancer Declarations
Kathi Kolb, the Accidental Amazon, has a new blog post that's well worth reading, especially the last bit, which says:
"Thus, for anyone out there who is not a cancerland resident. . . and thus doesn’t get it, here are a few declarations, in case you blocked them out the first or seventeenth time around, or just thought perhaps I was making it all up.
- No, I am not ‘all better.’
- Yes, I am still slogging my way through fatigue and low energy three-and-a-half years later. No, it’s not as bad as it was. Now, it’s less like being run over by a freight train and more like being flattened by the occasional stray eighteen-wheeler.
- Yes, my concentration just sucks sometimes. And my train of thought sometimes derails unexpectedly. Although I can still usually find my way home.
- When #2 or #3 are bad enough, I have to stop what I’m doing. Immediately. Not when it’s convenient for you.
- I am working part-time not by choice, but out of necessity due to #2, 3 and 4.
- That means I pay all my old bills with 1/5 less income. So if I say I can’t afford it, I can’t afford it. Period.
- That also means that saying, ‘Why don’t you just hire someone to [fill in the blank with exertional life/home/yard task] for you?’ is not a helpful suggestion.
- That also means that suggesting I should get more physical therapy for my chronic cording/arm/shoulder/chest pain is about as helpful as baying at the moon, because it involves a $500 out-of-pocket deductible and an average $30 co-pay for each visit, which I can’t afford. Besides which, it’s almost pointless, because no matter how much physical therapy is done on me, the problem always comes back.
- It always comes back because radiation damage is permanent. P-E-R-M-A-N-E-N-T. Write that down and stop bugging me. If you really give a shit, how about buying me a hot tub?
- No, I cannot work ‘some extra time’ to make up for my lost income. I can barely scrape out my part-time hours. That’s P-A-R-T time. See #2, 3, 4, 5 and 8.
- When I make plans to hang out with you so we can catch up after not seeing each other for a while, that doesn’t mean it’s okay to bring your secretary/sister-in-law/new boyfriend/other-person-I’ve-never-met-before to tag along without asking me beforehand so that maybe their presence will mean I won’t talk about cancer. Guess again. This is where I live and I’ll talk about whatever I damn well please. And if you don’t like it, don’t make plans with me.
- No, I am not cured. I am NED. There’s a difference. Look it up.
- No, I will not explain any of this to you again.
- The next time you don’t understand something, I suggest you RMFB, which stands for ‘Read my ___-ing blog.’
Ahhh…I feel much better now."
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Amy
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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