CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
Comments
-
Gaia, your news just sucks but I am glad that you feel calmer now. And no one would EVER kick you out of CrazyTown! You belong here with the rest of us crazies...I look forward to the new/old blog. Love the title...go for it and take care of yourself!
Well, my own waiting room craziness ended and now I am crazier than ever. As I noted on another board, tests came back high risk for reoccurrence and I am off to chemo....I thought I was crazy for blurting out to MO that I'd have rather lost my breast than my hair...but he told me he has heard just that from a significant number of his patients.....anyway....time to juice the nasty little buggers, or something like that. and right now, time for a walk. I need the exercise and a chance to get outta town just for a few minutes.
Octo.
0 -
morning octo
I feel you on that statement. I did loose the breast. It doesn't obviously make a difference!
But I am sure many many including me haveblurted that out!
Also I know we are all at different stages on our paths but I recommend checking out Amy Berman. She was dx with inflammatory BC stage IV and given 18 months. It's 4 years later and her line of treatment was one thing at a time. I'll get a link and post it.
I actually reached out to her on Monday and she responded and we are going to meet next week for a 'what do you value' powwow'
Link to follow
0 -
Here' is one link
0 -
Anyone ever deal with petachie? I've had it on and off for a few months now, at least that's what I think it is. It seems to come and go on my arms, but I have it on my legs all the time now. I haven't brought it up to the doctor, but the last couple of days I've been on the outskirts of crazy town about it. The only reason I am calling it petachie is because I googled it and that is what it looks like.
anyone...anyone?
0 -
ok, what is patachie?
best to not stay in Crazytown but show it to your doctor
dang but I get into deep do do when I try to do the doctor thing myself
0 -
ok so I found the Mayo site, it sounds like weird and so many reasons, think I have had some myself but it seems like it could be a side effect of many meds, best to yell to doc and get their advise
0 -
Tang..from Wiki...
The most common cause of petechiae is through physical trauma such as a hard bout of coughing, holding breath, vomiting or crying, which can result in facial petechiae, especially around the eyes. Petechiae in this instance are harmless and usually disappear within a few days. Petechiae may be a sign of thrombocytopenia (low platelet counts) when platelet function is inhibited (e.g., as a side effect of medications or during certain infections), or in clotting factor deficiencies.[1] They may also occur when excessive pressure is applied to tissue (e.g., when a tourniquet is applied to an extremity or with excessive coughing or vomiting).
If unsure, petechiae should always be quickly investigated. They can be interpreted as vasculitis, an inflammation of the blood vessels, which requires immediate treatment to prevent permanent damage. Some malignancies can also cause petechiae to appear. Petechiae should be investigated by a doctor to rule out the more dangerous conditions.
Quit Dr. Google and talk to your MO !!! He is not only an oncologist but a hemotolgist as well
0 -
RainnyC
I got done with chemo in January and had sufficient hair coverage by May and plentiful eyelashes, which was a great relief. I used men's rogain, which the physician assistant says is safe and does not cause cancer.
men's is stronger because the belief is they desire to be harrier. And I did have face hari, peach stuff, but it is gone.
I lost my eye lashes again, which I hear is common, but they are back again.
so have faith, and rogaine and this too shall pass.
Been working solid for last three days and travelled alittle, so nice to know everyone is up and about.
Susan,
hang in there, I think I felt a whisp of fall air this morning. I feel so inspired with brisk mornings, they give me hope in change - and change brings the possibility of goodness! My prayers that comes soon for you.
0 -
Gaia- thanks for sharing that link on palliative care. It was very informative and sensible. Even now, after seeing myself through this business, and a brother through hospice a couple of years ago, I seemed to be a bit confused between palliative and hospice care.
I didn't see any mention of mistletoe in that link. I have to admit that scared me a bit. But after reading the link you shared, I am comfortable that you are asking reasonable questions and seeking reasonable information. And here in C-Town we will continue to laugh at ourselves, if all are willing.
It's your body, your life, and your choice. Seeking the best QOL for yourself is YOUR decision.
Katy
0 -
Octo- sorry to hear your test results directed you towards chemo. I had a high intermediate Oncotype score of 30 and couldn't, in my case, and at my age, deny myself the opportunity to fight it hard in the early stages.
It wasn't fun, but I made it through. When you learn what regimen you will be on, let us know. My stats are similar to yours, perhaps I can help. Feel free to PM me at any time.
I joined the March 2015 chemo group, since I started chemo in March, and it was of invaluable help. The support I got augmented the advice I got from my MO, especially in regard to the SEs. Nobody gets them all. It seems each person gets a deli-style, personalized, multi-decker shit sandwich.
I only wish someone had given me the map to Crazytown back then. I was going there in my head, circling and spinning, but it was only when I arrived here, and found the perfect compliment of other crazies, that I could tame the awfulizers. Thank goodness Crazytown is a real place! Thanks again, Beppy!
Hugs to all, Katy
0 -
Hello again. Got the colonoscopy done, gads only 12 polyps this time, one down from last year, how lucky can one girl be? First thing I did after I got home was have a nice cup of coffee, probably a no-no, but I missed my morning coffee. Am now trying to drink lots of water to dilute the coffee.
SlowDeepBreaths: I did not have the needle biopsy of nodule on thyroid the first visit, it came on the second visit, and I was amazed it did not hurt, it was done by an Endocrinologist and she was very skilled at it. She is in Billings, Montana however, and a bit of a hike for you, I used to live there. I hate needles too, have not had a lot of luck with IV's blood draws etc, they always want to do the right side, saying the veins are better there, but I had lymphedema a year after my surgery and now prefer they don't use the right side for cuffs and needles. Today the nurse was an expert, got it in my left hand, no problemo, can't even see where it went in. Feeling ok, but was told to take it easy today, I am an expert on that. Like Jacbirdie I say thanks SLOW for starting Crazy Town.
dsgirl
0 -
Thanks Jackbirdie for the words of encouragement....really appreciated. likely to start early September...have the regimen details but left them at home, and I am writing them from work and of course my mind is a sieve.....so yeah, thank goodness for Crazy Town! And hugs to all!
0 -
Jackbirdie glad you found the article informative. Thank you for your concern over mistletoe. I know it's a challenge to see someone operate outside the box because of the unknowns. But I truly feel it is ALL unknown. No one can say for sure how any one or multiple things respond from human to human. We are all so beautifully unique.
One vital thing that is unfolding for me is that this is a true opportunity to explore the truth of what my stated values are in the face of having to put them in action. Meaning we all have beliefs and ideas that become the standard operating system of our lives, but we rarely get to see how functional or true they really are for us unless faced with such deep challenge.
I have questioned ( and continue to question) a LOT about my 'stated belief system' in the last few months. Most stands AND I know within that in 6 months, 6 years or 60 circumstances could shift and I might make different choices. I guess I am saying I am remaining flexible. But for now I will go to MO tomorrow to discuss Herceptin/femara alongside mistletoe. Here's a link to a mistletoe story:
http://hub.jhu.edu/magazine/2014/spring/mistletoe-...
It is an anthroposophic medicine regularly used in Germany both on it's own and alongside conventional therapies.
On another note Slow sounds like a good call to reschedule- you've had a lot of company so being run down is normal- even without the beast!
TBC
0 -
Gaia- I read that last article with interest. I am happy to hear you are working with an open mind, and will consider these as complimentary studies and not forgo the Herceptin- a targeted therapy, not a chemo, fwiw.
I thought you wrote very eloquently about putting your standards, beliefs, and cornerstones of who you are to the ultimate test. You are very smart, very brave, and I sense you will be good to yourself, no matter what. I got goosebumps and tears in my eyes when I read what you wrote.
As a gardener, and a patient, I am familiar with the yew, which is the formidable toxic base behind Taxotere, a much-relied upon (in fact, I relied upon it) chemotherapy agent.
Before that, the mighty and beautiful foxglove, Latin name, digitalis sp., which many of us will recognize as one of the first successful heart medications and still used today, but I'm betting now in some kind of synthetic copy (since the largest producer of foxglove is the ditches alongside the country roadways in England and they have made it a national crime to pick them). Anyway, my point is that none of us should be surprised when something from nature is considered as a possible tx. Many of them started that way. The trick is, as you indicate you will do, stay balanced, not throw out that which has been clinically trialled, but instead, be open with the somewhat proven old with the encouraging new. As my new friend, I can live with that approach. Even though it is not my business to do so. But I care.
Anyone who has known me for the six months or so on these boards knows that I quite frequently become subject to outburst that they ARE all guessing. I say that on dark days, but I know it's not completely true. Perhaps a better way of saying it is it is art as much as science, and there is always an overlay of randomness that gives most of us a lack of basic emotional shelter that we crave.
The thing is, none of us, cancer victims (am I really a victim now?) or not, are going to get out of this life alive. And it is how we live, and the honesty and loyalty we show ourselves, that to me speaks to the highest level of dignity we can accomplish in these circumstances.
Sermon over. I think I am getting fingercancer from writing too much with my iPad in my lap. That could probably cause liver cancer too, so I'll stop now.
Love all you ladies!
And please, call me Katy.
0 -
OKAY cray town ladies - I posted, which means I committed to start to say some stuff , on my older blog - fckjuice- sometime soon I will make the correlation of fkcjuice and C
here's the link:
0 -
SuzyBlue, I agree. There is a lot of love and caring on BCO. I'm glad you're here with us.
Sula, that is an inspiring story. I'm so glad Herceptin is available to all the HER2 women/men. Equally glad your friend is doing so well.
gaia, I wish you well on your treatment choice, and hope you can knock the beast into its cage. I'm glad to hear you're keeping an open mind to all treatment options. I really struggled with the choice to do chemo and radiation - it made no sense to me. In the end, I did both. Good luck tomorrow at your MO appointment!! Please let us know how it goes when you can.
Proudtospin, my DH and I use the Terro ant traps. I've never seen a trap work so well. It attracts so many ants and then they take it back to the colony. I hate ants....but I must admit I have an odd fascination with watching them all collect in the clear ant trap. Having the OCD personality I do, I keep all my open food in zip lock bags. When we have an ant attack it's always by the kitchen sink. I never had them invade anywhere else in my kitchen. I attribute that to the Terro traps!!
Octogirl, Sorry you have to do chemo. We will help get you through. I'm hoping you have minimal side effects. I hope you enjoyed your walk today.
Tang, I never heard of petachie but I do have those red marks on me. They are random and not clumped together. I pointed them out to one of my doctors, and I'll be darned if I can remember what they said about them. It must not have been anything they worried about, because I can't remember any kind of treatment for them. I will try and get a picture posted tomorrow so we can compare. In the meantime, you may want to mention them to your MO to be on the safe side.
Katy, laughing at myself is one of the many things that get me through my day. Without laughter, I would definitely be in the loony bin.
I would like to thank Tomboy for encouraging me to start this thread. It was great to find a fellow crazy in her, and it has been comforting knowing we aren't alone!! haha Thank you for all of your kind words.
dsgirl, WOW.....12 polyps. That sounds like so many. Not that I know anything about polyps, because I won't let a doctor anywhere close to my down south region. Are that many polyps typical??? I love a nurse that knows how to get into our veins!! If a nurse doesn't get it on the first stick, I ask for a new one. I have no patience for a stick and hunt nurse.
Huro, Thinking of you. I hope your visit with the surgeon went well today. Please let us know how you're doing when you can. Hugs to you!!
I've got a funny story. A few weekends ago I went shopping with my nephew, DD and DH. There we are in Target, and my DH finds something that catches his eye. He said, "We can really use one of those."
My DD was shopping for a baby present for her Aunt. My DD and I were quite puzzled as to why he felt we needed a breast pump. hahahaha He thought it was a mini desk fan!!!! He was REALLY serious - not trying to be funny. My DD and I laughed so hard!!!! We were laughing all the way out of the store!!! Never a dull moment in my household!!
0 -
Slow.. Hahaha..How funny... You'll beable to dine out on that storyabout Hubby for years. :-)... Thank you for your kind words !
gala..I love your blog.. You have a real gift for writing..! Thinking of you..
Katy... I thought your "sermon " was great.!!
Just wondering.. Have any of you ladies had the 3 D mammogram .. and what was it like ? Pre dx our screening mammograms are 2 D... But I will be having the 3 D one this time.. I am such a worry wart :-(
..
.
0 -
Lucy: I had a 3D Mammogram for my diagnostic mammo...and if anything it was gentler...I thought it was fine, probably not something you need to worry about. Hopefully your experience will be similar. Good luck!
Jackbirdie, my chemo regimen is Cytoxan and Taxotere, 4 treatments, every three weeks. So yeah, sounds similar to yours. I definitely need to find, or start a Sept 2015 Chemo thread. Thinking about cold capping. Don't want to buy a wig. HATED getting a brochure about wigs from MO's office...felt like tearing it in little pieces. what a racket.
I have a big work trip to east coast planned in middle of treatment. MO says fine to go if I feel up to it. Would that be totally a crazy town thing to do?
Octogirl
0 -
Morning all
Katy I appreciate your thinking. and I love that you are a gardener; I want to be able to say that soon too..... My man and I are crafting a plan to get out of the city so I can actualize that dream at some point soon. Being near the earth is so important for well being; I fear I stayed away from regular contact too long.
Must admit I woke with a bit of a cloud hovering above me. Yesterday I felt so bright and hopeful and somewhere in the night I was mind tripped. Ok it probably didn't help that I woke at 2 am and for some unknown reason hopped on the site and read some depressing threads from other bone met ladies..... ugh. I can see I am going to have to practice some self control.
Meeting with MO today and although I have a good idea of what the plan will be, there are still other questions to be answered, so another teachable moment awaits me.
Octogirl, I can't speak directly to what your experience will be and how you will feel re travel, but it does seem to me that having future plans is important and also knowing that you can always change your mind as things move forward.
Slow- that is hilarious re the breast pump morphing into a desk fan. Hilarious. also what does DH stand for?
hugs
0 -
yes I am definitely hooked on this thread and so glad for Slow to have thought of it and to have invited me!
me I am working on my chiro exercises for my dang dumb back. Wonders as they are working and back is better. They are also helping me on my wobbly balance and feeling positive there. Have to have a conversation with Medicare folks on how many more sessions they will pay for. I wasted visits with a dif PT place so it is a little confusing now.
I think the entire thing of a spassing pain in my back has taken a lot out of me and sure that folks here get it. The stress of just figuring it all out. This has been harder on me than my BC as that was sort of clear and simple to choose. I so feel for those trying to figure out junk now.
So tired today and delayed todays chiro visit to sleep a bit.
Hot around here yesterday so could have used one of those desk fans! Funny but I would likely have not known that it was either!
0 -
Lucy ........had my first 3D Mammo.......a tad longer..........no more painful.....just they take another view, so your in it longer.........you know while they run behind the protective barrier.......
One problem......some insurance companies are calling it experimental........they may find an excuse to not pay for it next time......I have Aetna.........got a letter from them saying this one is covered.....so 'next one may not be..........
Of course I went ballastic...........how dare they.....the newest thing and they want to deny BC patients...................0 -
Ducky,
I know why they put you through security you are the oldest, smartest, grittiest pretties, funniest, sexiest Crazy Broad they ever met!........
Hope this post finds everyone full of hope and awe of the beauty right in front of you!
I am totally gardening tomorrow - can't wait!
0 -
Head bobbing just above water. Looking around to see what's happening.
I was going to post my latest cancer diagnosis, hair cancer, when I was hit with whiplash cancer. At hotel the night before my UCLA appointment I found several gray eyebrow hairs sticking straight out. No tweezers in bag, I don't have much in the way of eyebrows so a gray hair really shows up. Anyway, off to UCLA for the 2nd time in 2 weeks. Traffic was light for LA, and bam! Rear ended by young woman who said her coffee mug lid was stuck under the brake pedal. My car is only 4 months old, a new-born in my life. We were able to drive on to my appointment after exchanging info. My eye doc insisted I see an ER doctor before leaving hospital. Dx whiplash. So now we are in the middle of the insurance and repair stage. The frame is bent in addition to all sorts of fender, bumper, side panels. My virgin car met the real world. Hair cancer not so important today.
Best wishes to those of you dear friends who are circling Crazy Town. I'll read back and get with the program soon. Jan
0 -
I will speak with MO about this weird petachie rash stuff. I made the decision to switch to a new MO and see him in November...maybe I should go in sooner. I'm so used to being in crazy town or the suburbs that waiting doesn't matter too much. Half the time I think I'm just crazy and don't even want to talk to the doctors about it anymore because I think they are waiting to send me to crazy town permanently. Hoping this new MO will not make me feel like old MO did....but who knows maybe I'm just gonna be like this for awhile
((hugs)) to everyone
0 -
Kathy.............LOL...........Imagine, the gaul of them..............I went nuts over having to pay for our yearly Mammogram just because they add the word "Diagnostic"............I have to pay a co-pay because of that word...........then some chick says "well its for your benefit that we do it that way"...................I said 'hold on there Sweetie..the chick sitting across from me in the waiting room is looking for the same thing .........."cancer".............isn't that what your looking for in my mammogram too.......so what makes her different........we're both looking for the same thing.................but because you use the word "Diagnostic" on my bill to Aetna, and you don't hers...........I pay a co-pay of $40.00..............she goes to lunch with her $40.00.............discrimination........clear and simple..............and we're the ones who already have BC..........you people suck..............I didnt care.......said it as I saw it............ok, I'm done...........LOL0
-
hmmm not sure if I am correct but I was getting Diagnostic mamos for the first 5 years after ending all the shittie treatment. Then the onco changed the script to screening mamo. Div was the screening mamos are just basic one shot for each view. Now how much do I pay? not sure but this last one I paid 0 and that was my first time on Medicare
0 -
Jan- oh no. Your brand new car..that just sux. And whiplash. So sorry.
0 -
Had a bone scan on the 18th of August. Back pain since May, comes and goes..... Not worried until after the bonescan... lol. Have to wait until the 2nd of Sept when I see my MO to get results. Ack!
0 -
Oh clarn...that's too long to wait! Can't they tell you something before?
0 -
Clarn that's a terrible amount of time to have to wait! Can someone help you advocate for something sooner
0
