CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Octo, that is some bad news. I bet your other sister is very nervous now. Well, crap, just like you said. ((((Octo))))
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Octo- I am so sorry.
More on the derm story mañana.
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Octo, I am so sorry that now your younger sister has to go through this--at least it's DCIS, so maybe not as rigorous a course of treatment as invasive. I worry like crazy--my sister is two years younger than me and hasn't had a mammo in over 20 years, despite my reading her the riot act when she flew in from VA to help me after my lx. She is an early-childhood substitute teacher, and I think she’s afraid to jeopardize that by possibly needing surgery. Hence her rationalizing that ignorance is bliss.
As to my sick friend, the news is getting worse. Besides her COPD turning into emphysema, she also has pulmonary hypertension. She is still an inpatient at Northwestern, but she can't stay there forever. But because she needs high-volume (>30L) O2, her husband & son are having a devil of a time finding a facility to take her. None of the nursing homes or assisted living centers--not even the best ones--are so equipped. There used to be a great one around the block from her home, but it was torn down to build multimillion-dollar yuppie townhomes.
They're looking for a long-term acute-care (LTAC) facility that is properly equipped, but they generally will not accept patients who need to be there longer than a month. The facilities that offer pulmonary rehab offer it only on an outpatient basis, and she really isn't safe at home without 24/7 care and high-volume O2. Her family can afford that, but her husband is a busy retinal surgeon with (like my DH) a practice on the S. Side and even in NW Indiana, but they live Near North/Lincoln Park. Her son (my son's best friend since first grade) lives in Los Angeles and has had to spend two weeks longer than he expected in Chicago (he'd been planning to fly here just for Thanksgiving week). Her husband is afraid to have her cared for at home, in case the oxygen equipment malfunctions at night or on a weekend (he's had to get up in the middle of the night to change her tanks, unkink hoses, etc.). We keep telling him that respiratory equipment services make emergency calls to residences as quickly as they would to hospitals or nursing homes, but he doesn't believe that. There is a chain of respiratory hospitals called Kindred (formerly Vencor) on the N. Side, NW Side and downtown--but they are for patients on ventilators or being weaned from them; and they too have time limits. Adding to her problems is that she misses her three dogs (two Jack Russells and a German Shepherd) terribly, and her husband wants a facility that is either near their home or near one of his hospitals. Tall order, I fear.But her husband and son do want to go through with hosting Thanksgiving at the neighborhood restaurant up here that they like, and will bring her dinner from there. We're willing to take over the cost & logistics.
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((Octo)) I have that kind of family history, too. It's an incredible blow every time someone is diagnosed, and so, so scary. It makes you feel so powerless to keep your family safe. I know with you for a sister, she will get good advice and have her big sis looking out for her.
Rosesrx, crossing fingers for a good report in a couple of weeks. Keep us posted.
NotAgain, take care of yourself, and don't be afraid to step out for a bit if you need a break during the party.
Sandy, glad to hear the good news about your husband. About your friend, is there a Select Speciality Hospital in your area? We have one here, and it was the solution for a relative who needed long term hospitalization. Not sure if it fits the time limit - I can't remember how long we needed it. It was at least four weeks, but I can't remember if it ran longer than a month.
I spent most of the evening at the library doing research on my micromet situation and picturing myself banging my head on the table. I want to make the right decision.
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Cubbie, I went to their website and there aren't any Select Specialty Hospitals that offer acute long-term pulmonary care anywhere in or near IL--in fact, their closest hospitals, period, are in N. central IN, central IA, or NW WI. At this point, it looks like either Kindred or retrofitting her home with the proper equipment and round-the-clock help. In the meantime, NW's own Clare Pavilion in Streeterville--nice and posh--can take her, but only for 3 months. And if her lungs were to further deteriorate, she would need to be transferred.
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Hi ladies just popping in to say hi! I'm having my 2nd recon/implant replacement on Wednesday to fix left rippling, open up a pocket (one boob is square shaped at the bottom) and I have a double crease between my cleavage.
My PS thinks if I go with a slightly bigger implants along with more alloderm added will help. I will also be getting my portacath scar excised. Right after, I'll be wheeled to the radiologist where they will radiate the scar area to prevent keloids from coming back. Who woulda thunk that radiation can be used to improve scars.
Even though this isn't my first rodeo, I still get nervous. Anyone else watch the show Botched and think hmmm maybe I should apply. I do every time I see one where the breast is fixed.
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octo, so sorry about your sis, I can only imagine if my sister got such a diagnosis but although we have tons of cancer of dif sorts in the family, not related exact that they are smoked~~
Cubbie, so hope your family comes up with a solution. When my mom got bad with her lung cancer and she needed O2, she did it from home till the very end. No money for fancy places, I think the O2 thing can be handled from home but maybe a 24 hour care person and a portable generator is needed
OK so I am totally confused as I was sure this week was turkey day until corrected by someone yesterday. Clearly a sign of brain cancer just bad memory
heard from my sister yesterday, her two boys are sort of still finding themselves at 24 an 28, well the 24 year old just got a nifty job selling caviar, wholesale. Sister got a sample can that retails for $150 so hoping his favorite aunti I will get the same for the holiday
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Morning Crazies
A lot has been unfolding as usual in CT.
Octo I am so sorry to hear about your sister; I can see how that news has usurped the return of your taste buds. Nothing like C to put a bad taste in everyone's mouth.
Katy, waiting for that derm story when you are ready. I am sorry about the knot in your belly, is it related to the upcoming appointment?
Ducky- as usual, there are no words for your her-stories. Hilarious and um erh no wonder you had 6 children... lol
Mulligan I am sure it's natural to be more anxious with a redo... maybe stop watching bitched for a bit.....
NotAgain I hope you can enjoy the celebration and maybe you feel close enough to someone there that maybe you can have some aside to to share a little more about what you are facing. I have a uni. the bs left some tissue, 'for cosmisis' reasons so I actually 'appear ' to have a little cleavage. At some point I may have the other breast removed. Flat would be fine for me, recon is just not something I want or need.
Rain- We get so much produce in our CSA but I still feel the desire to shop the markets to hand pick some things….
Ci Good news about your DH
Marie that is a funny text.
Slow sounds like you had a busy and family nourishing time. Get some rest!
Shorfi Staying in bed all weekend sounds great!
Tomboy you crack me up
Rose glad the test was 'uneventful'PTS- caviar.... yum!
Been really diving into the Martin Prechtel's work. Being re- 'minded' about the importance of feeling/expressing grief and how it is inextricably linked with praising life and the importance of being/sharing it with your' village'. one of my villages is certainly CT - so thank you ladies.0 -
here is my derm story
Yesterday I went to my 6 mos derm check. I've had lots of different skin cancers and a significant family history. I really like the doctor but I always wait forever to get in. So almost two hrs in the waiting room and they come get me. I'm nervous because they always seem to find something. He asked how chemo went, how I am feeling. Naturally I had a mini meltdown. He looked at my face and mentioned something he didn't like cuz it was growing horizontally. I didn't remember it so he showed me in a mirror hmmm. He got to my chest area and as everyone does when they see it he asked a few questions about why this and that were done the way they were. he was very kind and I could tell he felt sorry for me. i started crying again in and said I found it awful to look at. That I probably hadn't noticed my face because I hate to look at myself now.
So we had this discussion about just taking it off now or watching it. I debated, considering I'm in my 100% phase of insurance paying, he was offering to do it right then (so no hours wait another time). I am so sick of all this so I said ok and asked the nurse to hand me my purse and I took a clonazepam and an oxy on the spot. I knew a shot in the face was going to hurt. I'd had a large incision nearby about 2 years ago. They took me over to the surgical suite. I know this nurse pretty well and we chat for a second, she's trying to get me to lie back and relax. Tears streaming. So she starts to sterilize the area, using some solution and dabbing it in and rubbing, and she says, "oh look, it came out!"
The nurse was laughing. I was laughing, crying, and so embarassed! It must have been a smear of chocolate or something I missed. The doctor must have been a bit embarassed too but he took it in stride, muttering something about his fantastic new melanoma cream! I high-tailed it out of there and this time I am back on the one year sched. You can bet I'll wash my face more carefully!
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oh Katy! well congrats for having washable cancer!
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OMG Katy! washable cancer. If Only!
hugs dear woman!
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Jacki;e............hysterical.....wouldn't it be great if we could wash all the brown spots, wrinkles, blotches, and crap off our faces that easy...................Would love it.......I would look like 30 again...............I was a sun worshiper, and trust me..............The face shows it.............
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I was having a hard time figuring out what the spot could have been. Finally I remembered since I waiting from 11am to nearly 1pm to see him, I got hungry, and ate a protein bar that had some chocolate in it in the waiting room. So I was able to reassure myself somewhat that I didn't leave the house in that state!
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Jackbirdie: AWESOME, and you told it so well! I now have a huge grin on my face, that I am sure won't wash off!
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Jackbirdie...............I am smiling so hard at my desk. I needed that laugh. I hope no one decides to come into my office. Thank goodness for chocolate carcinoma!!!!!!!
NotAgain...try to enjoy yourself at the party...I know how hard it is to be happy at times when we continue to go through this crap. {{{{{{{{{{HUGS}}}}}}}}}
Octo...so very sorry to hear about your sister. I have a younger sister who is 18 months younger than me...I am 61. I had to tell this idiot sister of mine not to take hormone pills for her hot flashes. She said "I can't take it". I said either suffer from the heat surges or deal with having breast cancer. I am hoping she is not taking them...
Gaia...with all that I have been through, I am sorry I didn't go flat. My husband said it was my decision and he would support, but with all the problems with getting ultrasound exams every 6 months for these dag-nappit lumps that pop out from nowhere...I'm sick of it. I tend to get even more crankier when it is time for my appointment to get the ultrasound and then to see my breast oncologist afterwards (Thursday). Was at the dentist yesterday getting a temporary crown, and the whole time I was praying...I wish I could just go to sleep and not wake up.
So tired of being strong for everybody. So tired of always being in pain from this stenosis and herniated disc. I'm so tired of this.
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(((Shorfi))), I get you with that, me too, many days.
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shorfi, there is a man on facebook who is dealing with breast cancer, he just posted a comment that when we need pain meds, we take what ever the docs have recommended, it is is OTC stuff, then take it for the benefit of our family
so I just took a tylonel
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Shorfi- I'm glad I made you smile. Especially today. So sorry you're having a rough time. I totally get you. Sending a warm hug. (((Shorfi))
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Sandy, too bad there isn't one in the Chicago area, but it was worth a look.
Katy, what a story! Your dermatologist needs to go visit the optometrist!
Hugs, Shorfi.
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Octo, I'm so sorry to hear about your sister. What wretched news. That's the kind of sibling bond you don't want to share, though stating the obvious, she'll be grateful for your experience.
Shorfi, hugs. I hope you get some pain relief soon.
Katy, er, sending wipes or something through the pneumatic tubes. Your story made me laugh!
Christine, I can't stay out of the farmer's market. And why should I?
Proud, could it be terrible to get free samples of caviar while your nephew is finding himself? I didn't think so!
At last it feels like fall outside!
DS is doing AP French homework. The assignment is to answer questions about a couple you know. Question four is apparently something like: What do they do to give each other pleasure? Huh? What was the teacher thinking? These are teenagers!
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Octo, it sucks that your sister has been diagnosed I to a time of ambiguity. May she learn to strive.
Katy, ha horizontal chocolate cancer, You need to mail them some chocolate Santa's or something.
ChiSandy, Praying for the best care for your friend and her family as they search for a solution to meet all of their needs. It has to be a helpless feeling wanting to alleviate the suffering and breathe for he.
Propofol brain is still hanging on. I managed to run a few errands today. Had veggies and salad for supper and did not pick up any junk food while at Sam's. Very tempting. The troll found a full time job, had physical and interviewed for a part time job as well. Hope he can find a place before Christmas.
I will go back and read posts. Stay safe, warm and out of the wind. Leaf cancer on the windshield creates blindspots.
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Katy, when I saw my splotch my first thought was spilled food, and I tried to wipe it off! (FP says to have RO, not the nurse, look at it before I go to see him or to Derm).
Some better news about my friend. The diuretics worked well enough that she's been able to be weaned down to 6L of O2, so today she was transferred to NW's medical rehab pavilion (not RIC, which is for neurological and orthopedic rehab). From there, once she's been stable for awhile, it'll be safe for her to go into assisted living (at a super-posh center near Water Tower Place). And they will let the pooches visit.
Had a sobering talk with my FP today. He says that with an ER+/HER2- low-Oncotype-score cancer I have no choice but to take an AI for five years, since neither chemo nor Herceptin would work. He also says that the hot flashes (“personal perennial summers") and joint pains are worth the increased chance of living long enough to die of old age (or at least holding off recurrence or mets as long as possible). But he does not believe I should take my MO's advice of treating my osteopenia (still haven't gotten the report with the score) with either biologics or bisphosphonates. The biologics cause terrible fevers, infections, bone pain and even increased chance of other cancers; the bisphosphonates at the very least will cause extreme esophagitis (and as someone with GERD and a recent ulcer I don't need that); he has also personally seen horizontal femoral fractures (thighbone snapped in two), jaw osteonecrosis and even oral bone cancers. At the AAFP convention last summer, research was presented indicating that in most women osteopenia will never progress to osteoporosis. He suggests I stay with calcium (approves of my switching from Tums to calcium citrate), D3, magnesium and weightbearing exercise--and lobby my MO in Feb. not to add a bone drug to my Femara.
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Sandy, good to hear they have a solution worked out for your friend. That's interesting what your doctor said about the osteopenia. Having read a bit about the side effects, I'd be inclined to save the biphosphonates until you really need them. One of my coworkers is going through the same decision after having a small fracture, and she is going to try the same program your doctor is suggesting first.
Rosesrx, sounds like your troll has gotten the message that you are serious about this.
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Good Evening Crazies!
First things first....
Mulligan, We are all in your pocket tomorrow!! My goodness you've got a long day ahead of you. Sending all of our collective good thoughts your way. Please let us know how it goes when you can.
For Katy and Mulligan
Katy, We will all be in your pocket tomorrow for your MO appointment. Please let us know how it goes when you can.
That chocolate story is so funny. As you know, I had a similar experience with chocolate on my chest. I feel a bit better knowing the derm couldn't recognize chocolate cancer!! haha...thanks for the laugh!!Rose, Thinking of you. Keeping fingers crossed for B9 results on your polyp. Patients don't fall through the cracks....very punny. hahahahahahahahahaha!!!!!
MEG, Thinking of you as well. Good juju coming your way. Please let us know how your scans went when you can.
Octo, I'm glad you were able to get some well needed rest over the weekend. I'm so very sorry to hear about your sister. WTF indeed. I hate this damn disease. Gentle hugs to you both. I hope she joins us here on BCO when needed.
Rain, Not only does my husband bake, he also cooks and plays nurse when needed. He's a good man. The cooking came late in life, but now he loves to try different things.
Ducky, I just don't know what to say about that cooking story. I just about fell out of my chair when I read it! haha....I can't even come up with anything clever to say. Not too often that I'm speechless!!
Shorfi, I hope you have a great time with those grandbabies this weekend. Pain is just the pits. I wish I could take it from you.
PTS, Hope the brain cells were functioning well for your call with the fidelity guy.!! I just hate when I have to think.
Queen, Good to hear from you. When is the surgery?? "Chestal lady parts." hahahahaha....I'll have to remember that one!
Tomboy, hahahahahahaha.....My slow chemo brain took me a minute to get the dyslexic part. We've got a bunch of comedians tonight. I love Crazy Town!!
Marie, I just love when our friends have a sense of humor. Too funny!!
Notagain, Big hugs to you. It's not easy getting back into the swing of things. Especially parties so soon after your new diagnosis and upcoming surgery. Your sisters here will be with you in spirit this weekend.
Cubbie, Hugs to you too!! Decisions are so difficult. I hope your research is helping.
Gaia, Thinking of you. ((((Gaia))))
Sula, Come out and play!! I need food porn!!
Chi, Cute story. Thanks for sharing it here. Good news for you and your husband!!
I must admit I slept most of the day and of course I'm now wide awake. I've got a meeting with my muscle relaxer in ten minutes. Hopefully that will put me out until morning!!
Loved logging on and catching up with all of the crazies. So many funny stories today!! I'm so thankful for all of you!!
Sleep well beautiful crazies!!
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Chi- how I wish you could just wipe that spot away. I'm glad you're friend has improved enough for a plan to fit her needs could be worked out.
Beppy I have to admit I thought of you. I knew that was one if the first CT stories you shared. If only I'd had my Crazytown survival kit with me
Rose, I'm so glad the troll is getting it together and it looks like we won't have to send Octo or Italychick in to crack their knuckles. And keeping my fingers crossed for b9 results too.
Mulligan, yes that party is already going on in your pocket. We are with you!
Cubbie- the research and the decisions are so hard. Try to be very quiet and "listen" to your heart, and "feel" your stomach. The only person you have to account to is you. These days when they present us with options it seems the risks and reward are not equal, but equivalent. You have to feel comfortable and know what you can live with. We are all holding your hand quietly, without judgement, and support any and all decisions you make.
I rescheduled my mo appt for early December. I am on a 3 month check cycle right now, but I don't think a couple of weeks will matter. There's only so much a girl can take!
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Good morning Crazies....
Thank you so much for the kind words of support for my sis, it really helped. She is starting to make plans and get treatment in order and I've spent a fair amount of time, as has my other sis who had bc, just being there for her. (I did tell you all it makes three out of four sisters who have had/have bc, right? Totally insane and not in the good CT way...). Ok, here is the thing: and I tell you this because you are my CT Sisters and it is hard to say because it sort of sounds crazy (or maybe not?): I keep thinking about three of us with bc and worrying that it means at least one of us will progress. Seems like the odds are so against us. I really need to learn to live more in the now. and I think it is time to break down my long standing resistance and get a therapist. Ok, working on it. Slowly....
This has also finally motivated me to call and schedule some genetic counseling. We are negative for BRCA (had been tested for that when sis was diagnosed, given our heritage), but family history on my father's side is pretty much unknown (a long and somewhat funny story for when we all finally get together. I may or may not actually be Jewish on my father's side, but of course it is a matrilineal religion) and this is the first bc that we know of in the family. That is part of the WTF aspect: it just wasn't on the radar, and then to hit three of four of us! So, the various MOs think a closer look at genetics is a good idea, and we have a referral and insurance approval: certainly seems like a good idea for the one sister who so far has avoided it, and for my daughter and my newly diagnosed sis' daughter. I know how you feel about there only being so much a girl can take, Katy, so probably will schedule that for after the first of the year, but I will get on it.
Speaking of my father, I am off to Sonoma this weekend to see him and to visit my stepmom. Sula, I know how busy you are right now, so won't suggest a meet up, will just wave from the Plaza, and we will be back up that way soon (had been trying to get up there at least once every month or two until bc hit.) Still, if you do feel like a coffee break sometime this weekend, and are even reading this (you must be so busy!) do feel free to PM me. My father is 91 and has dementia and heart problems, and is in assisted living, but still hanging in there. No big plans for the weekend: just visit father, maybe watch the Big (Stanford/Cal) Game with him Saturday evening (Go BEARS!) and take stepmom out to dinner. Maybe my taste buds will be clear enough by then to appreciate one of Sonoma's good restaurants.
I am feeling much better 1.5 weeks PFC, I might even have a long walk this am! Taste buds definitely taking a while to bounce back, but it will happen. Oh, and I am starting to obsess over hair return: I took a pic of top of my head today. Have the feeling I will be doing that every few days until I can really see progress....
Sending hugs and love to all of you, especially those of you with tests coming up! Take care of yourselves!
xoxox
Octogirl
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Octo, Have you seen the commercial with a huge octopus in it? I don't even know what was being sold, it made me smile to think of you!
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octo, you do have an unusual family history, sort of makes al those folks who like to say " Oh I will never get BC as not one in my family has ever gotten it." hate that smug stuff. I confess to having very mixed feelings on the biophosphates. I took them when told too cause that is how I used to behave. Not sure and glad no one is suggesting that now.
Yes I am planning on letting my new "caviar account manager" know that years ago when his cousin worked for Starbucks, we all got bags of coffee for Christmas. Wonder If I can expect that here?
My sister and I have been discussing family receipts and she believes that mom cheated when she gave us the instructions for shoe fly pie as it never comes out the way mom's did........interesting theory but I think sister is using the wrong syrup! Family discussion !
Off to do some more spiffing up my dirty house
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Octo, you are in my head! I have three family members who currently are post-treatment. I don't know if it sounds crazy, but I know I feel the same way. I know it's crazy in the sense that the worrying will drive you straight to Crazy Town. Getting diagnosed myself has made me even more worried, because I know even more about this disease than I did before. I wish I knew the answer, but I think it's good we can talk about it here.
I'm in a similar situation genetically - negative for BRCA, and other known mutations, but there has to be something going on in our family. Unlike your case, we know our family trees on both sides all the way back to Europe, so it seems unlikely we have Jewish heritage. I'm curious what else a genetic counselor can provide, other than testing - have your doctors given you any idea what to expect?
Glad you are feeling better and the taste buds are returning.
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Octo- octopus hugs with all 16 arms wrapped around you. Actually I have no idea how many arms an Octo has, but they are presently all dedicated to you. And Cubbie. Alternating. I did not have any genetic counseling, but I have read more and more that the scientists and researchers feel quite strongly that there are other genetic links out there. They just haven't been identified yet. It's very scary stuff you are facing. I'm glad we are all here together.
The brain power of this group is substantial. I therefore suspect that most of us are tempted to subject our fears and concerns to the intellectual process, when in fact, there can be little sense made of it. At least not currently. It's not fair or just. There is no remedy for future security. So, like Octo so bravely said, we all "need to learn to live more in the now".
Love to all my Crazytown sisters today.
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