Can we have a forum for "older" people with bc?
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Petite, I'm working on a design for a vest with huge pockets. I want one to carry art supplies without having to drag a big bag around. I'll use cotton in a no-show dirt color or pattern with pockets for my phone and money on the inside. Once I get my sewing machine working again, I'll make a prototype. It's tempting to buy men's shorts to get a cargo pocket.
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MCBaker, ChiSandy & CindyNY - Thanks for the good wishes/prayers for my SIL. She most certainly needs them!
Quick Inspiration: Remember, stars cannot shine without darkness.
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I am a helpless bystander as my oncologists play phone-and-e-mail-tag with each other over who has to issue the orders for which scans & tests to check for mets from my ocular melanoma ("ciliary body," the most aggressive and extremely rare type--fewer than 4 cases per million people). My ocular onc. Dr. Mieler wants my treatment to take place w/in the next 2 or 3 weeks--but he is at UI Health and my regular medical oncologists are at N. Shore Evanston (Dr. Merkel is covering for my regular MO Dr. Law, who's supposed to return next week). UI Health doesn't have Epic yet, so the two patient portals can't "talk" to each other.
Ocular onc.'s nurse-navig. will communicate only by e-mail, and because the clinic is so crowded the pace is glacial. But he has treated 1200 ocular melanomas, and nobody else in the region even comes close. (One of the docs who trained him at Wills Eye Hosp. in Phila. retired; his wife is still practicing but now has several associates, none of whom are anywhere near as experienced as Dr. Mieler--so even if I risk COVID by traveling to Phila. it might be for naught). I am afraid my life will be sacrificed to a turf war between hospital systems--but nobody in the N. Shore system has significant experience with ocular melanoma (the only ophthalmologist at N.Shore who has treated eye cancers is only 3 yrs. post-fellowship). Meanwhile, everyone seems to have gone home for the weekend.
This is the most helpless I have ever felt. My breast cancer was a walk in the park by comparison. And both cancers were (and are) asymptomatic, discovered by accident.
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Sandy-- Am sure 100% thinking of you and hoping things get worked out.....am so glad you have someone with so much experience with this on your side....No wonder you feel helpless.....ugh...
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So here we go again. Dr. Merkel has ordered CTs of chest, abdomen & pelvis, and a comp. metabolic panel. His office nurse called to tell me to call Radiology right away to schedule the scans (hopefully even tomorrow) and pick up the oral contrast to drink 90 min. prior to the scans. She said to call STAT--but my "approximate wait time will be ... 47 minutes!" I'm now on "hold-Hell." At least Radiology is open 24/7 to give me the contrast. I'm still in my PJs, otherwise I'd hang up and drive up there right now. May take my cell and pick the "urgent" or "emergency" option to cut in line.
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Sandy-- DO IT!
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Home early from the hospital. So glad that I did well enough to be home tonight. A few challenges but all should be fine. Hope I can get a quote in tomorrow. Long bumpy ride home with my three holes. Good news though -- I can take showers right away. Just being gentle around the holes . I am thrilled. Long ten days ahead wearing my catheter. Good news is the Dr. here can take it out. Works for me and saves me a 150 mile rd. trip to get it out. Yay.
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Trill, I love Pantaloon's picture on the card -- delightful.
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I can honestly say that my MO did not warn me of the 25% risk of a new primary within 5 years post-dx. There is alot that I have learned since being a member of BCO that was not revealed by my BS (a real a**), my RO (used conflict avoidance when asked questions relevant to me), the nurse navigator, and even now I am learning my MO wasn't exactly forthcoming? She did disclose I am at higher risk for recurrence of ILC than IDC but we have yet to have the conversation that ILC risk is higher after 7 years.
Since I have always been the outlier when it came to stats, example with only 25% of lumpectomies requiring a second one, yup, that was me. Barely negative margins, < 1mm, required additional radiation boosts with development of axillary cording. Only SNB with one negative node and yet, I developed lymphedema. I am concerned because I was just dx with a pre-cancerous polyp that was not retrievable via colonoscopy due to its location and the risk for bowel perforation. The biopsy was positive. I was referred to another GI specialist who has the expertise but disclosed to my GI doc that "there's an 85% chance of my being successful in taking it out". So while I have an appointment with him, I am seeing a GI surgeon first. My GI doc was honest enough to say professionally "has not encountered this type of polyp ever" but says it must come out. Shared with the GI MD that once you have been dx with BC that you do not hear the prefix "pre" with the word cancer. Failure of the colonoscopy will then require surgical removal so I am gathering all relevant information to make my decision. ILC recurrence in GI tract is established so I am concerned about this weird polyp.
CeliaC, sorry to hear about your SIL. She needs a break as well.
ChiSandy, hope your outcome is positive.
IllinoisLady, speedy recovery.
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Jackie, glad the surgery went well, you have no actual incisions (they must have done it laparoscopically) and when you need the catheter pulled you can have it done locally. Fingers crossed that it was a success. Now rest up!
Betrayal, hope your polyp can be either electro-cauterized or "snared."
I, too, am an outlier--we all are, in that 88% of women never get breast cancer. I'm hoping that as rare as this type of melanoma is, I can beat the odds and hope it takes decades if ever to spread (or the 1% chance it may just be a nevus). Be careful what you wish for--I used to moan, "why do I have to be so average? I wish I were a little more 'special'."
It's weird, though--I always wear sunglasses outside in daylight, and until I turned 65 my eyes were mostly brown--now they're a sort of brownish-hazel. (Ocular melanoma usually happens in blue, light green or gray eyes).
So after holding for nearly 30 minutes, I got cut off! When I called back, I got "the we are now closed" message. I hung up, said "f- this s-," and threw on shorts & a tee, and raced up to Evanston Hosp., catching the lab just before it closed, picking up the oral contrast, and scheduling the CT scans for tomorrow afternoon. Just got the blood tests back--utterly normal. (In fact, my best "H&H" in a decade--high enough to donate blood if I weren't still on letrozole).
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Sandy - glad you were able to run up there, best of luck with the CT scans tomorrow.
IllinoisLady - yea! Home, rest, sleep in your own bed, and you're able to shower too. Quick healing to you.
Betrayal - I hope they figure out quickly who and how they'll get this polyp out of you. You're doing the right thing seeing the GI surgeon as well as the GI specialist. Knowledge is power.
HUGS to all!
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Sandy, Praying hard- no atheists in foxholes- that you are an outlier once again and come up with a nevus. You may feel helpless with all the frustration around scheduling scans and different, non- communicating hospital systems, but you seem to me the coolest cat ever. I can’t cope with things up in the air- as if that isn’t life- would not be able to eat at all or sleep, til life was just routine once again, and you, instead of being fear paralyzed, can act, can retrieve the contrast stuff, can act in your own behalf, can go to Cellars, can drink, can tune into the news, can communicate, instead of being in the fetal position. So kudos, brave one, with you in thought all the way
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Thanks, Judy! I last ate at 10:15 (an olive-oil-fried egg & black coffee) and am still somewhat queasy. Hope I can choke down that contrast solution--Bob warned me (from the days he had to have CT scans after getting his colon perfed during a 'scope) that the viscosity is the tough part. Gotta drink the first half (10 oz) at 1:30, then the second 10 oz at 2:30. So seeing as how the scan is at 3pm, will have to take it with me to sip along the way. Gonna be a brutally hot one today--had planned to stop off after the scan at Kohl's to return an Amazon package (the rare pair of jeggings that are too tight), but I think I'm gonna want to stay inside with A/C as much as possible.
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Well said Keywest. Thinking of you Sandy. 👍🙏❤
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I may break down at some point, but just as when I was first dx'ed with IDC, I go into strategy, tactics & action mode. It gives me a semblance (admittedly, perhaps the illusion) of control over the moment--if this year has taught us anything, that's all the control we can expect when the future is so uncertain & fragile: not just for each of us but for all of us (locality, state, nation, world) as a whole. One thing I'm doing differently on this "second rodeo" is to try and stay the heck away from Dr. Google. Each successive "visit" freaks me out even more. And unlike with breast cancer, we don't have a layperson-oriented "Bible" such as those by Drs. Susan Love and Elisa Port.
Bob knows, of course, as do my spiritual advisors (rabbi & cantor). My HK knows I have a tumor in my eye (because she'll be my ride to & from the procedures) but I haven't told her what it is. Don't want to burden her, seeing as what her DH is going through. Haven't told Gordy or my sister, nor any of my real-world friends--not even my BFFs or singing partner. In fact, I am staying away from my Caring Bridge account, because I'm loath to go public with this till I know exactly what I'm dealing with. I have a CD of today's scans, but I am not about to slip it into Bob's computer and see things I don't want to see, at least not till I get my oncologists' spin.
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Good plan, Sandy. I prayed for the best, but prepared for the worst through many of the crises I have been through.
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If we could but recognize our common humanity, that we do belong together, that our destinies are bound up in one another's, that we can be free only together, that we can be human only together, then a glorious world would come into being where all of us lived harmoniously together as members of one family, the human family. -Desmond Tutu
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Betrayal I am sorry to hear about the polyp -- but on the other hand glad that is was found and is KNOWN. We seem here to be going through a lot as of late and I'm just hoping and I and all of you get smooth sailing and onto the good life.
I'm doing ok, but not moving too much and still sleeping plenty. Tummy has been abit rocky so not eating much, but I'm sure that will all change
soon enough. Hugs to all with medical procedures - your in my thoughts and I'm hoping for the very best outcome possible. Hang in there.
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So wise to stay away from Dr. Google. Which, maybe because I was a Reference Librarian, before becoming a Social Worker, I can’t seem to. Scared me so about the AI, I was in terror about taking it. And just last night, reading about Interval BC’s- those discovered within a year of a clean mammogram. Yep, my good mammo was 5 months before I felt the lump. Dr. Google says interval BC’s have different characteristics than others, are more aggressive, higher mortality. Don’t think this is true in my case, but will check it out next Monday with MO, Dr.Merkel, who(m) a fellow resident at the Mather in independent living, who was diagnosed Stage 4de novo, said has kept her alive and active, the dynamo she always was, for 13 years.
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Jackie, glad to learn your surgery went well. Best wishes for a full recovery.
Sandy, best wishes for a good outcome for you, too.
And the same for Puffin.
Goodness, I miss checking in for a while and people start falling apart!
We have been experiencing hot and humid weather here in northern MN but today a north wind is blowing and it was in the low 60's when we got up.
We celebrated 51 years of marriage last Sunday. We mustered our nerve and had dinner at an Italian restaurant. The food was good and the servers wore masks but I wasn't entirely comfortable dining indoors.
Hope everyone is having a good Sunday.
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IllinoisLady, I am glad you are back home and posting. Wishing you a speedy recovery.
ChiSandy, I agree with your thoughts on "Dr. Google". Wishing you the best.
Keywestfan, I found my lump 5 months after my clear mamo. It is almost a year since I found it. What a year it has been!
With so much going on, my cyber hugs are with all of you and the medical issues.
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Okay, I think we could all do with a bright note so I am posting pictures of the baby parakeet that is 7 days old today. Unfortunately it would not let me post them in the proper sequence. In the second photo, I wasn't able to change the cage because the mother was sitting on 3 eggs and relatively immovable as the male was feeding her in place. The egg it hatched from is the tiny one on the far left corner. The first photo, I was able to do a quick clean and get the baby into a more confined nest using a small cat food bowl. It's eyes are open now and it is developing pin feathers. Sizewise it has nearly doubled just in a week. Both parents are highly attentive so I am loath to disturb the scene. Just like a newborn baby, it has poor head control. The other two eggs appeared to be infertile and she abandoned them, so they have been removed. Enjoy.
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Love the parakeet ( pic ). That is s day brightener for sure.
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Thank you, Betrayl. I needed a lift today and mother nature often provides one.
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Awwww....cute little budgie! Thanks for the ray of sunshine, Betrayal!
My scanxiety has been taken down a few notches: neither it nor my bloodwork showed any signs of mets. M.O. says the 5mm lower-left-lung-lobe nodule (say that 3x quickly w/o stopping) is almost certainly scarring from all the deep coughing I did most of Dec., but wants to repeat the chest scan in 3 mos. anyway. Some "fatty invasion" of the pancreas, but Bob says that's a souvenir of all those prior years of obesity. (He sees that all the time in his obese patients). I also have a uterine fibroid, but seeing as how it's asymptomatic, the "rusty baby carriage" is staying put.
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Hi Ladies,
I know I don't know most of you anymore, but still know a few and wanted to check in to see how this crazy covid thing is going here. This is a crazy time, but I also see so many of you are going thru some difficult times and I'm sorry for that. Illinois I pray u heal well and quickly, u r always so stable about everything.
Best wishes to all of you.
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Carole
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Cami, Really good to hear from you. It's been a long time but lots of old guard is still around. Hope things are going well with you.
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Cami, it is good to see you and I hope you will pop in a little more often. You are missed. The covid issue is getting scarier. I think it will be with us a while. Like a long while. Hoping that everyone I know manages to stay from away from it. Now don't be a stranger. Love your avatar.
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