CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Oh Molly. Yes, I know it is possible because I've seen so many woman move on from BC. I'm not saying it won't always be on your mind when scan time comes along, but I do believe it's possible to move on from the crazy. I was in such a good place right before my progression and I know you will get there too. Please don't lose hope!!
I'm sorry I'm so behind on this thread. I got the results of my pet scan Friday and they tell me the BEAST is back. I really thought the VATS surgery would buy me some more time before I had to make some decisions. When the old MO called shortly before getting home from my pet scan, I knew it wasn't the news I wanted to hear. Thankfully, I had my whole family with me over the weekend. I've decided to move my care to the new MO and we also decided to move up our trip east. We are leaving next Friday!! I'm so excited!!
I've been very reluctant to give this news to everyone. It feels like it's just been yucky news on top of more yucky news. I'm a bit scared that it's come back so quickly, but I'm still hopeful that we'll get it under control. For now, I guess I'll take back the crown as the craziest crazy!!
I'm still reading and catching up. I've been keeping my eyes on all of you!! hahahaha I'm so thankful for all of you. Words will never express what you all mean to me. I adore my crazies!!
Off to do some more reading.
Love to all...quiet crazies too.
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Oh no Slow... hugs - Hoping this baby hummer soothes your soul..
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It's beautiful, GMA! I love ALL of your pictures and I enjoy your peaceful thread so much. Thank you!!
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For you, Beppy, I am glad you are moving up your trip. I am also thankful you shared with us so I can be more mindful of praying for you. When you get back, we need another get together. I can pick up Tomboy so she doesn't oversleep!0 -
slow, so sorry. Pleas stay here with us, don't move away from this forum. After all, you started it!
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Molly????? You would DO that for me???? You sweet lady! I HAVE been trying to get better with my sleep habits. I am like the night watchman, keeping vigil in the dark, thinking about too many things... and then getting up to early, and needing a nap. So, that's one thing I have been working on. Dabbling with paint and markers etc, on canvas, and mudding drywall seams for my man's job. he knows I am very good at it! So that's what I have been doing.
Beppy, I am so glad you are going on your trip!!!
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Beppy, safe travels--and travel as much as you want to!
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I'm sorry to hear the Beast is back! Gentle hugs for you
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Beppy; STAY WITH US. Stay with us. Is that not why you set up CrazyTown in the first place?
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Tomboy, yes of course I would. Us crazies need to be there for each other. I am glad you are keeping busy.
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heck Tomboy, I could pick you up too! And yes, I would drive back to SoCal to be a part of it. Hugs, hugs and more hugs Beppy!
Hugs to you also Molly, and to all the crazies.
and thanks Katy for the kind but wise words of advice. I needed to hear someone remind me to take care of myself today.
xoxox to all!
Octogirl
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I really want to thank Katy and Beppy for such wonderful, understanding posts. I really do need to take some distance from BC if I can but not from you all! You feel like family to me. I think the ramping up of crazy for me is because my diagnosis anniversary is June 8th. Anyway I am grateful to all of you.
Here's Ayden playing outside today.
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Thank you Molly. A great big hug right back to you!! How is Wyatt doing? I sent you a PM. I am in agreement with you - the crazies need to stick together. Thanks for sharing the picture of Ayden. What a cutie pie!!
Katy, Thanks for that reminder. Your wise words are always so soothing. I can't thank you enough for listening to me ramble on this past week.
Theresa, Thank you for your kind words. I'm so grateful for CT and everyone here.
Tomboy, Will we be picking you up at the airport or train station??? I'm always so happy to hear when you're dabbling!! I've got a new alarm clock for you.
Gaia, You are always in my thoughts.
Lori, Thank you for the hugs!! All hugs are ALWAYS welcome!! Sending one right back to you.
QM, Yes, you are correct. Thank you so much for your support. I honestly haven't known what to say. I'm still trying to wrap my brain around everything. Maybe I was in a bit of denial thinking if I didn't think or talk about the elephant in the room, the whole thing would go away. I guess that didn't work so well. I hope your nightmares are subsiding. I think I may need to send a dream catcher in your direction.
Octo, So good to see you! I love all those hugs. Sending some your way too!! I can't wait until our next get together. I haven't had a good glass of wine in so long. Maybe we can have a wine get together?? I guess I shouldn't be drinking but boy do I miss an occasional drink.
Twinnie, Thinking of you my friend.
I love our email exchanges. You've been such an incredible friend to me.JAN, Remember when we posted the baby pictures on another thread and we had to guess who each one was?? I think we should all post a teenage picture of ourselves just for fun. I'm going to dig through my pictures and find one. I'd love to see everyone as teenagers.
Readytorock, We are all in your pocket waiting right along with you. You're never alone in Crazy Town.
Ducky, I never heard that story before. It's a shame they didn't pay you more. Years ago I was eating soup at a restaurant and I swallowed a bone. Within minutes I knew I was in trouble and it became difficult to take a breath. I ended up in the emergency room where they had to put a scope down my throat. Luckily they found the bone. The restaurant gave me $10,000. It seems like you went through so much more and didn't get very much.
Sandy, I hope all turns out well with your skin issues. Sending good thoughts your way.
Iris, I hope those orthotics are working out well for you. Are you any place close to Philly?
lcm, I'm really sorry to hear about your friend. Please let us know how she is doing. In the meantime, we are all here to support you. I can't even pronounce that thing your sister has but I'm glad she's going to keep her spleen. I'm happy to hear she doesn't have something worse too.
Cubbie, I haven't seen you around for awhile. You doing ok?? When someone posts often and then I don't see them for awhile, I always worry. Thinking of you and I hope you're off on some grand adventure.
Shorfi, Hugs to you!! I hope a get together is in our future.
Hi Sula!!
Oh my....how do my posts get so long? I see the new MO tomorrow. I know she wants me to start chemo right away, but I'll be darned if I'm going to miss my trip. I don't care if I have to drag my lungs and limbs behind me, I'm not missing it!! I will deal with all this cancer nonsense when I get back. Sounds reasonable, yes?
Love you all so much....quiet crazies too!! Thank you for listening and making this such a soft place to land. Crazy Town is like a comfy, fluffy cloud thanks to all of you.
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Hi Everyone, I have been lurking on this thread for quite some time. One of the quiet crazies I guess. Tomboy thank you for the hello a ways back. When I began this journey I had no idea that cancer would bring me the opportunity to connect to such an amazing, caring supportive and knowledgeable group of ladies (a few gents too). I feel like I'm getting to know each and every one of you and appreciate that you share so warmly and openly.
A little about me: I live 30 klms out of a small country town in New South Wales, Australia. I love the peace and quiet. Married my high school sweetheart at 19 and still going strong. We have 2 adult children, a daughter and a son and 3 beautiful grandchildren. I enjoy reading, camping and a variety of crafts.
Slow I was so sorry to read of your new diagnosis. Have a wonderful time on your trip.
Sandy, Hoping your pathology is good.
Molly it was nice to connect with you briefly on another thread.
We are forecast rain, rain and more rain over the weekend which may result in localised flooding. I shopped today and have bunkered down for the weekend. Sending positive thoughts and hoping everyone finds something special in every day. Hugs Donna.
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Donna, nice to see you here. Beppy, any doctor worth your time should agree that your trip is priority over starting tx. I hope it's the trip of a lifetime. Wyatt's doing okay. He tries to scare me on a near daily basis but at least he keeps me on my toes. Otherwise he's finished the course of antibiotics and we wait to see how long until the next illness.
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aaaah Slow - you go and wring every bit of pleasure out of that trip, and deal with stuff when you get back -- love your priorities :} -- we are all rooting for you. Huge hugs from the northern suburb of crazy town!
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DITTO Slow! Go and enjoy yourself and have extra fun for us also,as we will all be in your pocket! (((((Slow)))))
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I'm lurking lately. I read all of the posts, think of you all and include each of you in my prayers.
Still waiting the results of my thyroid US. No news is good... right?
Busy with kids end of the school year activities.... and trying to keep my head above water. Just overwhelmed.
Oh, and I want to add F Cancer!
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Beppy: in fairness, there's a difference between talking about a problem and dwelling on a problem.....but that trip sounds perfect.
(and yes, my nightmares are in abeyance for the moment. That over-the-top anxiety dream did the trick.)
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oh dear, slow i too vote for go on your trip and deal with the crud when you get home
Orthotics feel good and now question myself as to why I did not go to a foot doc earlier oh right, bad health insurance, asked a gym pal how long they last as they are not cheap. Pal said 2 years so guess that is not too bad
Got a reminder letter yesterday for the dreaded mamo thing, almost forgot but will go the end of the month
Best wishes to all
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Had my MRI today. They told me results could be ready TONIGHT - but of course it is the weekend and I won't hear from my doctor until at least Monday. Ug. I'm not going to have a good weekend with all of the anxiety I am having over this.
They did tell me to drink extra fluids tonight - and that yes, wine counts!
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I'll be keeping my fingers crossed and saying prayers for you readytorock! Yay for wine!!
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I'm so frustrated right now. I still have daily pain in almost every join of my body to the point that it's hard to walk at times, gripping things is a problem, sex is painful in my hips, knees hurt, elbows and shoulders hurt too. But all my labs show no inflammation or autoimmune cause.
MO sent a referral to rheumatologist anyway because it could be seronegative RA or some other autoimmune process but the UCSF rheumatology department declined my referral because they are super back logged and they aren't taking anyone with negative labs. WTH?!?
Now I have to find another rheumy or trust that my local PCP can do something. I'm just feeling very discouraged.
I think I'm going to try an integrative medicine doctor and see what they say.
I just want the pain to go away!
Bekah
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Bekah, I know that fibromyalgia cannot yet be objectively diagnosed via tests, but it sure sounds like that’s what you may have. Certain meds originally developed as anticonvulsants have for over a decade now been prescribed for neurogenic pain (resulting from by irritated nerve endings not caused by other disease or injury), which is now believed to be the cause of fibromyalgia. Have you discussed that with your PCP?
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So sorry Bekah. That just really stinks.
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Bekah, I am so sorry. that does stink. Would it be possible to get a referral to UC Davis instead? Maybe not quite as world class as UCSF but almost and just as close to you I think; I had really good treatment there for something totally unrelated (eye/vision issues) and no trouble getting in. Sandy's suggestion sounds promising...
Hi Smurfette! Good to see you here!
ReadyToRock, my fingers crossed also for those MRI results!
Poppy, I've missed seeing you....end of school year can feel overwhelming. Almost summer! (and with temps here of 105 or so this weekend, yeah, summer has already hit the Great Central Valley!)
Sula, hope you are reading and keeping up. I will be in Sonoma towards the end of the month so going to send you a PM about coffee on the square....
Slow, hope you are packing! We expect postcards from the road! Love you girl!
The update on my(burned) foot: it is healing very nicely (I credit the aloe). The good news: I can now walk without much difficulty at all. The bad news: I am in more pain now, a lot more pain, which apparently is the result of nerve endings that were damaged regenerating. It comes and goes: I will be fine one minute and the next minute feel pain so severe I can't even continue whatever I am doing. The pain feels like a cross between being stabbed and a labor/birth contraction (but ummm..not in that location!) Not at all what I imagined burn pain would feel like...and since this is just one 1.5 inch burn, I am getting a very small glimpse of the agony that burn patients go through. Funny you should mention anti-convulsants, Sandy, as they are supposed to help for similar reasons to the ones you describe. However, I am not that bad off to make it worth wanting to ask the doc for them (it is in just one spot after all), so doing ok by trying to keep off my foot as much as possible, elevating it, and OTC pain meds. Pain really does suck, as many of us know already. I am hoping that in another week it will be mostly all healed, although I did read somewhere that the pain can come and go for months! Sigh
And in other news, ()*#($)# is hitting the fan at work again. I am spending ALL of my time on bureaucratic crap that has little to do with the parts of my job I love. Yep, the retirement talks are getting more serious around here.
On the topic of CrazyTown, I have a MO apt Monday afternoon....feeling anxious about it. I have decided that I just can't handle what the AIs do to my knees. There has to be an alternative, so going to start by discussing knee replacement with MO. I don't need or want a referral, just want confirmation that is what I will have to do to offset what the AIs do to worsen the arthritis. I need to be active. It sucks that there isn't a better alternative.
HUGS to all
Octogirl
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I tried Gabapentin but had night terrors so that one is out. UC Davis or Stanford are both options...I just have to talk to my PCP. I don't like the fibromyalgia diagnosis (I'm sure nobody does) so I'm really hoping they can find something else that is causing this pain! I've always thought fibromyalgia was kind of a wastebasket diagnosis...like 'we don't know what it is so lets just call it fibromyalgia'. But I'm starting to think it might be more real and more ugly than I ever imagined.
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Bekah.. That is ridiculous they won't accept you because you have negative labs ! My hubby has seonagitive Rheumatoid Arthritis.. 30 percent of all RA sufferers are seronative., and it doesn't relate to the severity of the disease.. Ugh.. Hope you can find some relief soon. (( Hugs))
Twinnie... Thinking of you..What fun getting ready for your trip.. Love you .
Smurf.. How did you go in the rain.?? I was socked at how heavy it was 😱
I'm going to visit my son and family today.. It was his twins 4th birthday party yesterday, but there was a huge rain event, and it was too dangerous to drive..
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Lucy we missed most of the rain. We were forecast over 80mm but ended up with less than 5mm. Cloudy again today but don't think we will get much rain.
Have a wonderful time with your family today. We are heading to our daughters on Wednesday for our Grandsons 6th Birthday. Having a few days with them. I'm really looking forward to seeing them but dreading the cold.
Glad your burn is improving Octo.
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Has anyone here have any problems with crazy people parking so close to you while parked in a handicap space? I took my Mom to a Drs appointment last week and a woman parked so close I couldn't get my Mom in my van! Then today a woman parked so close to us that I couldn't get in! What is wrong with these crazy people? Are they the only ones that can use handicap parking? She not even in a parking space of any kind! Thanks for listening to me vent!
And she had the nerve to ask what my problem was?
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