Bonfire of the Goddesses
Comments
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Gritgirl, thanks. Actually, I am doing better, coping a bit better today, probably because I am surrounded by a very loving family. I dread when they all leave because then I have too much time to focus on me and my issues rather than talking and laughing and carrying on with then. We were going to have a real bonfire tonight, but they just finished tucking in all my bare-root plants, have only a few more potted plants to get into the ground tomorrow and it is way too late for me. So I am headed to bed for some good zzzzzs, with gratitude and love in my heart. Sending some of it to everyone here by the fire tonight.
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Linda, I know what you mean.
I'm throwing in the blood thinners and bloody noses. My damn oncologist actually said something cauterizing the nose. That sounds unpleasant. Now I'm up and anxious again. Had two on Monday and one just now.0 -
Grit, oh so sorry you are dealing with these SEs...hope you bounce back soon.
Linda, you are so resilient...and sounds like seeing family has helped you along. Hugs and positive thoughts to you too.
Am tossing my poison oak itchy spotty nasty rash on the fire....sometimes i wish i could burn it off me.
It is still spreading...hope it stops soon. Not on face...just jawline. Rest of me...ugh.
But I know it will run its course. I have had worse. (once)Wishing everyone here a good week end and safety from the severe storms that are ravaging our midwest for many days now.
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Joan. I am so sorry you have poison oak. Uck
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Joan, how did you get poison oak???? I am extremely sensitive to poison ivy, so can very much empathize with you!!!! Ugh!!! Are you using some topical OTC steroid cream on it? I found that sometimes helps. Also, there is a product that I cannot remember the name of now that is a special soap you use right after exposure and it helps you from getting it.
My family actually drove through some of those storms to get here on Thursday night. They managed to dodge between most of the cells on the trip, but I was quite anxious about them until they got here. Looks like we may be getting some of them this afternoon as well, so going to get that gardening finished this morning. They worked until past dark last night getting plants put in holes - I will post a picture when we are done - it is just looking so good so far! We hope to go out to get me some "garden art" this afternoon - will probably rain so that will be a fine occupation.
Family has done me a TREMENDOUS amount of good. We are very close even though we live so far apart geographically. No nieces or nephews or spouses this time - except DH who has to work this weekend - has been great. We will all get together with all the rest of the crew in July for a beach vacation, and I will enjoy all those nieces and nephews and siblings-in-law, but for now, this is just right. Today I am grateful, and realize how absolutely fortunate I am to have them, because so many others I know have so much difficulty with their families. I grew up thinking we were totally dysfunctional, fought the sibling rivalries big time, but as adults, we have become friends. I often wonder how that happened.
Gritgirl, if you are having such frequent nosebleeds, cauterizing is not the worst thing you will ever have to go through. They numb it up, usually with a little topical cocaine (yes, you heard me right!!! but it doesn't give you the buzz that the powdered kind does!), and use little sticks that look like long match sticks to touch the vessels that are bleeding. Believe me, it is better than having to have your nose packed to put pressure on those vessels to keep them from bleeding! It is very quick, not terribly painful, and the end result is usually very good, so please do not waste your anxiety on THIS! Use it for something worse ... like, ... well, I don't know ... maybe the sky falling down or something. I would probably get a good ENT doc to cauterize, though ... I trust my MO for a lot of things now, but probably not that....
Thank you all so much for your support recently - has been tough getting LE and having to learn so much in such a short amount of time about another chronic disease on top of the cancer and the drugs and the SEs from all that. I am still discouraged about it, finding it hard to focus on the things I CAN do rather than the things I CANNOT do, but when I come here and when I have my family to help, I DO find joy and love and beauty many times during the day, and so I am grateful. Hugs to you all!0 -
good morning Goddesses, the storm damage bypassed us so all is well in my little corner of the world. One more front moving through today then we may get a nice day tomorrow.
Linda, I have only one brother and we were not close until adulthood. Amazingly, he's turned into a decent adult, his wife is great, and so are his children. Who'da thunk it?
Haircut this morning so must run. Thankful for this place and you all. Happy June! ♥
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Gritgirl...there's nothing like having a GREAT ENT! VR's sinuses have been roasting on the magical fire for a year now! Bless that ENT who made me feel better! I hope you and Linda and even SAS can find comfort and keep it for as long as possible! Now if that fire can only do it's magic on the weather....
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Linda. I didn't realize you were in Oklahoma. I'm glad you're safe
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Gritgirl, I am not in OK, but TN. My family was driving through southern IL when there were tornado warnings, they missed them by a few miles! We have been lucky to not have as much severe weather so far this year, and we never get as much as OK and KS areas, but do get at least a couple of major storms that do lots of damage every year.
Wishing all you goddesses a good morning, hoping for a few moments of peace for each of you today.0 -
Hi folks dropping in with some links that you might find useful. Store away to pass around:) sassy
Someone mentioned CancerandCareers on the financial forum. GREAT web site for all things employment Thanks. I added it to my thread for newbies Just diagnosed -get prepared. Also, found another web site today, that I have included the link for, it is evrything you would like to know about saving money on drugs. The question and answer below the links are in regard on how to make the system work for you re: meds received in a cancer center.
Edit:6/6/13 Found two new web sites that are a must to review. One is on saving money on drugs. Start with 'home" page , then the really helpful page is the "About Us" Pg. Link is to home pge.
This next link is dedicated to most of the need to know info regarding work and cancer. BCO has much information on the main borad, but this link is much more expansive
HAVE A CALL OUT TO MY RESOURCE PERSON:If you bring in the coupon taken from the web site to the cancer center, will/can it be utilized to help pay copay ANSWER to question NO.
Per my resource: This is how to make the website work or other resources work for you while receiving cancer meds in a cancer center, SPEAK UP and let them know you need financial help, best to do when you have initial contact with CC. What they then do, if they are connected like mine, they go through their resources the same we would, but would be contacting as a a provider. Grant money or assistance can be available under all kinds of circumstances. Do not assume you make too much money or b/c you have insurance, money is not available. If say you get turned down initially, recheckin should circumstances change.
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WHERE IS EVERYONE HIDING? This thread has been quiet since Jun 6th. How is everyone doing?
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Jo. Just been getting by. A bit depressed. Been riding the cancer rollercoaster
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grilgirl - And a wild rollercoaster it can be. So sorry you are just getting by. Big Hugs to you.
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Throwing in belief, throwing in helping, throwing in it all. Let it burn.
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Throwing in Tamoxifen and ALL side effects. After 2 hysteroscopies, 2 D&Cs, a polyp removed and now post menopausal bleeding what else is there? A thick uterus - again - this makes three years in a row, fibroids that have come back with a vengence and multiple adhesions from a previous ectopic pregnancy. Had a transvaginal US and endometrial biopsy done the end of last week. Waiting for results and will get them this Thurs when I go for my annual pap. Already scheduled for a hysterectomy - ovaries included on Jul 13th. But, before surgery hubby and I are headed to Las Vegas to celebrate our 40th anniversary.
BTW! DID I SAY I FRIGGING HATE TAMOXIFEN??? I am off it for now. MO wants me to start back up after surgery and then finish out my 2 1/2 years I have left.
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Jo!!! 40 years!!! Congrats!!
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I'm throwing in my obsessing over every single f-ing cent because I'm worried I'm not going to be able to work. I'm throwing in worrying about ending up homeless because I can't work and lose my home and...talking about my hair, talking about options for breast reconstruction, spending all my vacation days on medical appointments, worrying about getting new tires so I can drive to treatment, pre-tied scarves, shoes I can walk in with neuropathy, water with juice to mask the metal taste, radiation cream, people babying me, worrying about anyone bumping my chest, chemo chairs, explaining to people why I can't use vacation days for anything fun, explaining why I'm not going out drinking or doing anything that costs $$, checking the Cigna website to see what was covered, having strangers come up to me to tell me who they know who died of cancer...it's going to be quite the fire!!!...oh wait...dealing with people who tell me I should have a spa day when I have NO f-ing $$ because I'm too sick to work and living off of credit cards praying I can make the minimum payment!
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Mariasnow, you said it all!!!!!
Have been thinking of all of you also, also riding the roller coaster. LE was the straw that nearly broke the camel's back for me. Typing with bandages is frustrating - I just cannot leave typos unfixed, and there are so many I just gave up this week. Saw MO and PCP yesterday, feeling a little more hopeful - may continue treatment after all. If I could just have more good moments each day than bad, i would be in better shape. No good days, but lots of days with lots of good moments.
Got my sense of taste back recently!!! Food tastes good again, so does wine, and I am having happy hour by the pool, expensive bottle of wine with cheese & crackers - bottle we have had since 1988 .... excellent and I can taste it!!!! So let's all have a little glass, share some love and support. Am so sorry some of you are having rough time - just our turn for crap right now, I guess.0 -
VR - Thanks.
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Linda, wishing you some good things and progress each and every day! Funny...after I wrote this someone at work who I don't know whatsoever came up to me and told me "I've been following your hair." She seemed like a super sweet person. It was kind of funny that someone I don't know has taken a keen interest in my hair growth choices! So it reminded me not to take myself too seriously either. I have a PS appointment today thanks to a hole opening up on my incision where I had my boost. Not good. I'm not going to be happy if I have to have my implant removed. I'm already preparing. If I do...it will be both. I'm not doing the uniboob.
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I'm throwing my boobs on the fire. My cancerous, horrible boobs that grew a HER2+ cancer so fast that I immediately was stage IV. I saw my breast surgeon today for a regular follow up and I gotta say, I am sick to death of doctors. I'm sick of the pain the reconstruction caused. I'm sick of the cancer treatment. I'm sick of my oncologist who basically runs my life. I'm am angry and unbelievably sad. Sick, sick, sick of it.
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I'm throwing tamoxifen on the fire.
I just had a complete hysterectomy, after 4.8 years of tamoxifen, 3 D&C's and finally a high grade premalignancy of the uterus. And my med onc was still pushing me to finish up the last few months of it, and didn't even mention all the gyn issues in her note--and I did see her the day before the final D&C.
So, after I find out I need a hysterectomy and am discussing lymph node removal with the gyn onc--since I got LE after "just" a SNB, I find this as the top hit on a google search of "tamoxifen and uterine cancer": OMG, I totally fit the definition of high risk, I was just 50 when I started, had polyps at baseline and had an 18 x greater risk. Why didn't my doctors know this? Why didn't I look into it sooner?
Just hoping for a smooth recovery and no trigger of leg LE, since I seem to get it at the drop of a hat. And sick of reading about "acceptable deaths from endometrial cancer" in press releases from ASCO about the ATLAS trial.
Sucks to be on the wrong end of the statistics. And I sure wish I'd had this information earlier: don't know that I would have done anything different, but I would have known the true risk
Other data suggest that low- and high-risk groups of postmenopausal patients may be identified before the initiation of tamoxifen therapy for breast cancer (17–19). Pretreatment screening identified 85 asymptomatic patients with benign polyps in 510 postmenopausal patients with newly diagnosed breast cancer (16.7%). All polyps were removed. At the time of polypectomy, two patients had atypical hyperplasias and subsequently underwent hysterectomies. The rest were treated with tamoxifen, 20 mg/d, for up to 5 years. The incidence of atypical hyperplasia was 11.7% in the group with initial lesions versus 0.7% in the group without lesions (P <.0001), an 18-fold increase in risk. In addition, polyps developed in 17.6% of the group with initial lesions versus 12.9% in the group without.
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Kira - I am scheduled for a complete hysterectomy next month due to lost of uterine issues since I started Tamoxifen in 2011. 2 hysteroscopies/2 D&Cs, polyp removal, thick uterus again. Just had to have an endometrial biopsy last Friday. Biopsy results were negative. Been postmeno since 2008 so I can totally relate to what you are saying. No one mentioned all the possible uterine issues. In fact, my MO told me Tamoxifen would not do such things - that was last Dec. He has since changed his tune.
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I had gyno issues before my diagnosis. I had polyps removed 6 months before my diagnosis. Four or 5 D&C's later, including more polyps, uterine thickening, fibroids and a hydrosalpinx...go look that one up.... I have now entered official menopause and got my first "clean" gyno report in almost 5 years... Just started Femara 2 months ago after 3 years of Tamoxifen. Hope the flushing calms down at some point because my internal temp is SIZZLING...and summer doesn't begin for a few more hours... I better not get close to the flames because I think I will melt...
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VR - I have had fibroid issues dating back 15 years. Was given hormones to shrink them. Then went through menopause and GYN put me on HRT. Lot of good all that crap did me. Ended up with BC and now come to find out the damn fibroids are back. Can't wait for Jul 13th and a stop to all the problems.
BTW! You won't melt. This is magical remember and you are a pink warrior and we don't burn. Sorry you are dealing with the internal heat.
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I sent that ACOG bulletin to my med onc, gyn (who really was so worried and pushed the issue despite a negative endometrial biopsy, and she was right, but would never, ever suggest a change in adjuvant therapy) and gyn onc: and the only one who responded was the gyn onc!
Literally, the day before my last D&C, my med onc told me I'd be fine, just finish the last few months of tamoxifen, and a week later I'm on the phone to her saying "I have endometrial cancer!" Wonder if she'll put that in her note.
Actually, because it wasn't invasive cancer, I won't change the statistics.
I had been seen by the adjuvant king at Dana Farber, the guy who writes the national guidelines, and I emailed him and he wrote back "We see endometrial issues all time on tamoxifen, but we consider them benign as a hysterectomy cures them, and it doesn't change our decisions"
I was supposed to be in his tamoxifen trial, but didn't make criteria as it got delayed, and I'd been on it more than a year by the time it was enrolling, and I had a fantasy that if I was in the trial, someone would have raised the alarm bells sooner. At least I know, coulda, shoulda, woulda, no difference.
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Kira... My MO originally said to me 5 years of Tamoxifen and then I should consider 5 years of an AI. Since I was 53 at diagnosis and premenopausal, it was also suggested that I try chemical ovarian suppression...which I did for two years. The third year on ovarian suppression, I finall became officially postmenopausal. During the three years that I was on tamoxifen, there was never any discussion about doing surgical o/s and switching to an AI. The fibroids shrank thanks to the Lupron and the uterine thickening kept getting biopsied every time they took out those pesky polyps. It wasn't until I was "officially" menopausal that all my physicians told me it was time to consider switching. So, now that things have settled down ...down there... except for the hydrosalpinx...I am left wondering how long I will now do an AI. Slow growing tumors like mine tend not to recur... But when they do... It is usually much later...so will I now be on the AI for 2 years more...or 5 years... Or perhaps 7 years????
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VR - Different ONCs have different thoughts on how long to be on an AI after Tamoxifen. If you have been on Tamox for 3 years some would say 2 more on an AI for a total of 5 years. Some would say 5 more years on an AI. For others, you could just do a total of 5 years on Tamox and be finished. It would be best to discuss this at length with your MO. Just remember the final decision should be yours.
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I know Jo all the different configurations of AIs and Tamoxifen. The NCCN guidelines devote pages 95-100 to "Endocrine Therapy" and all of the current studies...including those that are in progress. I sometimes feel like I'm at the Chinese restaurant...I'll take one from column A and two from column B....
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VR - You are so funny. But, I do know what you mean. It can be so confusing at times.
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