The Hermit Club
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markat--yay! Sounds like a great birthday celebration. I'm so glad you were able to relax a little. And don't stress over the clutter. It'll wait for you.
camille--you and Joey ok?
Laurie--Huntington Beach giving you happy times? Hope it's not overly stifling.
Slickchickie--as always, sorry you find yourself here, but as Jazzy expressed, it's a good nest for comfort and acceptance. We battle our ways out of darkness and anger on no schedule at all. There's no time table. Just doing the best we can... As Lily shows you, there's anger and grief at all levels, and we individually share what we're comfortable with. Good days/bad days. But, glad you found your way here. It's a great group to be with.
Hermits, all, wishing you each a good week ahead. Perhaps cooler weather and gentler se's?
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Hi everyone---we spent a lot of time at my older DD's home and I did not go swimming--Joey did and got lotion on like crazy and red as an apple and hurts like mad--not even that sunny, but u know how it goes.
Lily I get the same phantom stuff even now, I think my nipple is hurting or the side of my breast hahaha it's so strange.
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Hi hermits- sorry to hear about that sunburn Cami. Aloe vera may help. Poor little Joey.
Phantom pain is a strange thing. I have had it around other things that have been removed.
We got some rain early this evening along with a lovely rainbow to follow. We hope for more rain this week.
Have a good week and July 4th holiday my hermits!
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Teka u'r right but we're hermits don't do to much unless we check with each other hahaha. Unfortunately I'm still one, I think cuz I didn't go back to work--I do go out to dinner and parties, but there isn't as many as there used to be like yrs ago. My kids are going to WI late Wed. til Sunday and I'll be here I've got my cat and my dog so I can't go overnite anywhere--So' I'll really be alone with no car.--Being honest I'm not crazy about being alone in the house--I never minded my Condo at all--so we'll see how I do. But my dig is a barker and kind of scary if he doesn't recognize a smell of whoever is at he door. So that'a good.
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Our fireflies, lightning bugs, come out in June. They go away in July.
Sorry to hear about Joey, Camille
Jazzy we had some beautiful rainbows this weekend.
Feeling pretty good today. I actually went to bed before 11 and slept all night! Maybe I needed the night out to reset my clock or something
Have a great day everyone!0 -
Hi ladies,
I am sending all of my love and prayers to you. I have decided not to return to work until after I have completed all of my radiation treatments. Once I got home from Omaha, I realized how NOT recovered I was and I chose to not go on the Huntington Beach trip the next day. My husband took Nick and so I am home for a week alone with the dogs. My breast is very sore still. I have decided to try to do bit of physical therapy in the pool each day to help with the healing process. I have to do it early in the am or late at night though as our temps have are reaching 117 each day.
I had my first MO appointment the other day. This the letter that I have drawn up since that appointment. I thought you all would find my experience interesting. Here it is:
This is to document my experience with my first doctor’s appointment with Dr. K. It was my first time as his patient and the following was my experience. I believe it was harsh enough that he and others should be made aware of how he treated me and how he made me feel.
I would like to preface this documentation by saying that as a fairly new cancer patient, it has been quite a journey. When you are told that you have cancer, no matter how small or what stage it is, it is devastating and scary. There is so very much that a patient has to learn and go through. We need the help and care of our medical staff to guide us through the journey. Up to this point, I have had the most amazing care. I have encountered the most caring and educated doctors and nurses. Until I met Dr. K. The following was my experience:
On Friday 6/28/13 Dr. K entered the room without shaking our hands or greeting us. He pointed to his name on his jacket and said, “This is my name.” He repeated the action. He went to the computer and without looking at us he said, “Why are you here?” I was shocked, but I said, “Because I have Breast Cancer.” He said, “What kind?” I was a little taken aback as I didn’t understand why he didn’t know that answer. I said, “DCIS.” He said, “Where?” I said, “My right breast.” He said, “Well you know that that is not really cancer. That is a pre-cancer and so you are lucky.” I was shocked that he would approach me that way. I said, “Yes, I am lucky.” He then said, “So what are you looking for me to do for you? You don’t have invasive cancer and so you won’t be getting chemo. What is it that you want me to do?” NOW I was really stunned. I said, “Isn’t that what YOU are supposed to tell ME? I was sent to you for the next step in my treatment.” He looked annoyed and said, “Who sent you here?” I felt like I was in the Twilight Zone. I said, “Dr. B. My breast surgeon.” He said, “Well, he should just take it out.” At this point I raised my voice a bit and said, “He did. I have had two Lumpectomies in the past three weeks that did not clear my margins and THAT is why I am here!” I looked at my husband all exasperated. HOW could this doctor NOT know anything about me? The appointment got worse. I asked him what my Oncotype Score was. (I had asked Dr. B and he told me that the medical oncologist would give me that information.) Dr. K replied, “You don’t have invasive cancer. We don’t do Oncotype Scores on people like you.” On people like me? I know that is not true and so this made me very angry. He was very dismissive and insensitive. My husband then patiently detailed to him what I had been through in the month previous. My husband then asked him, “What do we do from here? What is your part in her future treatment?” Dr. K said, “I give you the little white pill.” WHAT?!?!?!?!?!? So my husband says, “Are you referring to Arimidex?” Dr. K said, “No, Tamoxifen.” At that point I lost it. I said, “Why would you give me Tamoxifen if I had a hysterectomy 15 years ago! You didn’t research anything about me!” His next statement blew me out of the water. He replied, “Because you still have your ovaries.” I yelled at him exasperated, “NO I DON’T! ARE YOU KIDDING ME? HOW DO YOU KNOW? YOU NEVER EVEN ASKED ME!! YOU DIDN’T EVEN HAVE THE COURTESY TO REVIEW MY CHART BEFORE YOU WALKED IN HERE! I DO NOT HAVE ANY OVARIES AND THEREFORE TAMOXIFEN DOES NOT APPLY!!” He looked at me with no emotion, shrugged his shoulders and said, “Ok.” I said, “Okay what?” He said, “Since you know everything, I guess you don’t need me.” At that point, my husband took over and calmly and slowly said, “We were referred to you. I’m assuming we wouldn’t be if that were not the next step in her treatment. What is supposed to happen with this appointment? Is she supposed to get a blood test?” Dr. K replied, “Yes.” My husband then said, “Can you explain the Arimidex a little? Can you tell us what benefit it would be to her to take it? Does she need to take it for five years or less? In your opinion, would it help her?” Again Dr. K shrugged his shoulders and said, “It’s totally up to her. It’s preventative to help ensure the DCIS does not return.” My husband dug deeper. He asked, “Ok….what percentage do they say it would help her?” Dr. K said, “It gives her a 25% extra chance of non-reoccurrence.” My husband said, “Okay….so in YOUR opinion…should she take it?” Dr. K replied, “It’s up to her.” We were so frustrated at this point. I said to him, “So, once I have the radiation, how do we know that the cancer is gone?” He said, “It will be.” I exhaled and said, “I’m asking you HOW WE WILL KNOW. “ He said, “You will ask your Radiology Oncologist.” I said, “But how will they know? If they aren’t drawing my blood and there is no pathology because there is no further surgery, how will they know that the radiation worked?” He just stared at me. I continued, “Is this why I am here with you? Is that how this works? You check my cancer markers before radiation and then after?” He again looked at me with no emotion and said, “Yes.” I felt like we had to drag the answers out of him. I said, “Do I get the blood test today? Do I do it here?” He said, “No, you go to Quest. Now, I will see you again in two weeks. You will come on 7/25.” I sat silent. He got up and walked out.
I can tell you that I fell apart in the parking lot. I have never been made to feel so insignificant and dismissed. He treated me as if because I don’t have invasive cancer that I was wasting his time. He was uninformed, insulting and insensitive. I NEVER want another patient to ever have to be treated that way ever again. I will not return as his patient. He is a doctor that is dealing with a highly delicate disease. Cancer changes people’s lives, especially when they are going through the process. Cancer patients deserve compassion, kindness and answers. He is void of that.
Sincerely,
Laurie Parr
Ladies, thank you for letting me vent. I will be making sure that his office gets my documentation and I will be assigned a new MO. I look forward to meeting my RO and am sure that I will have a much more pleasant experience.
XXOXOXOXOXXO
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Oh Laurie what an awful experience, I have never been talked to like that and u'r DH is a doll with loads of patience I would have gotten up and walked out telling him I'll see someone else, u'r useless. I've never heard such an insensitive idiot abot cancer in my life. I know some u have to get to know cuz they are a little laid back, but he is not one of them he' should work as a coronor and I know I would have told him that, but u 2 are much to nice. But I'm so glad u wrote that so other people won't be subjected to his insensitivity of anyone and hope it gets to him and everyone around him. He's an ASS--I'm so sorry u had to sit thru that, so get another Dr. and I;m sure u'll get a nice one--He might have been an escaped mental patient that's why he pointed to his name cuz he wasn't sure--see again I would have said that. But I'm just not nice like u 2. xxxoooxxx
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Laurie- that doctor SUCKS! I will say I have dealt with some bad insensitive doctors in the past, but this guy sounds like a real peice of work! My experience with both med oncs and rad oncs is that they tend to be a tad more sensitive, given the type of issues they deal with.
The MOs will also be the ones following you for years to come, especially the first two years. You will go every 3 months post treatment to be checked for bloodwork, cancer markers, etc. They will also be involved when you have your yearly mammo. They are the ones who help with your ongoing care. They are like your PCP cancer doc. So it is important you get on with your MO as the surgeon and rad onc will only be in the picture for a time.
Your surgeon was helping you to have the earliest treatment possible. I hear more and more women getting diagnosed with DCIS and having it treated fully to ensure the best possible outcomes. I had an Oncotype done on my DCIS and you should too.
I am glad you are going to slow down and wait until after radiation to go back to work. Everyone is different about what they need to do while going through this. You have a support DH and he will be your partner to help be your advocate.
Rest well and good luck finding another compassionate MO. You deserve only the best.
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mark you danced, how cool is that and you ate good things for your bithday you deserve it.
welcome slickchick...
Camie, sorry about the sb and you will be on the puter with us hope that is ok...wish we lived closer we could have a bbq with all of us...but we are hermits would we go?
Laurie how horrible that was for you. He needs to be reported IMO to more than just his office and see I would have gotten thrown out cause I would not have tolerated that behavior you who were so patient....he was disrespectful to both of you....and other adjectives I can't think of...I am so sorry that happened and that you are going through pain still.....
Thanks so much yes it was so nice driving, feels like I missed so much being in my room and out of contact with the outside world....my car is now fixed so excited....am going to to mall later with my son for him to get something....
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LOVE the kitty pic!
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Laurie, you simply ask for another doc. I'd never let anyone like that touch me!
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Laurie... if you want, I'll ask my dd1 tonight for advice, since I know she'll know whom to contact. You at least need to send a copy of your letter to director of oncology and the hospital admin and patient services. She can tell me specific titles, if you want. (She worked until two weeks ago in hospital admin and knows the hierarchy.) Pm if you'd like. As you pointed out, his actions were unacceptable on many levels. I am so sorry you suffered through that. I'm sure there are emotional wounds that will take some time to heal after such an ordeal... Hugs...
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Wait, did I miss someone--Leslie? Are u new to us or did I just not welcome u, I'm sorry if that's the case.
Skittle good help for Laurie, I hope u do that cuz I would really. He was so obnoxious. I like a computer for one of the reasons--cc,cc,cc u can go on and on.
I hope if anyone is in a hot zone u take it easy don't overdue. U know I won't
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Oh my dear friends, thank you. It is so amazing to feel understood. That is such a gift you give to me.
Skittle, I would LOVE to have the hiararchy! I was just sitting here wondering how to figure out who to send it to. I was afraid if I just sent it to his office, that it would be destroyed and no one would ever know about it. Thank you for your help. You can PM me the info if you think that would be best. XOXOXOXO
Camille, you made me LOL with the "mental patient" comment! That was a good one! Ha haa....
Blondie, I'm so very glad you got your car back! WHOOOOOOO!!!
Jazzy, thank you for your note. Your info helped me and I will make sure I get a new MO assigned to me as soon as I can. I am on hold with the office as we speak. I so appreciate all of your advice.
Thank you Leslie and welcome!! You will find these ladies to be a Godsend.
Teka-
I hope I didn't leave anyone out. Thank you all.
XOXOXOX
Laurie
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Welcome Leslie!
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Leslie, ditto Jazzy. Welcome...
Camille, Joey's sunburn healing? Poor little guy. Our school nurse puts wet sponges in ziploc bags and puts them in the fridge... Cools things and won't drip all over...
Laurie, Hope the pm went through. Sorry it's not all straightforward. (and I just thought a hospital was a hospital. I learned something new since I hadn't given it much thought.)
Rest well, all.
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OOO Skittle good idea aboutthe sponges-never did that one, but thanks it is better My DD and him are so light skinned--they burn so easiy no matter what they try--for both being Italian they look like paste.
I woke up to pee and thought I'd check in on everyone--it's pretty quiet of course.
So when u wake up I'm saying Good Morning. now.
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Laurie- I hope you are doing better today. I re-read your entry about the bad visit with the MO and a couple other things I wanted to share.
The Oncotype test is a gene panel test and the results are a score that usually fall into a low, med, high range. Those on the low spectrum never receive chemo, those on the high end usually do. For those in the middle, there are no clear known benefits known for chemo treatment at this time (a ongoing trial called Taylor X that should tell more in the next year or so). I had the test on both sides (IDC and DCIS) and that helped my doctors to determine my remaining treatment. It was recommended I do AI for five years and my risk was going to come down from 15-10%. That was good enough for me.
As mentioned, they did do the Oncotype on the DCIS. And just make sure you get the authorization from your insurance company as some are funny about paying for this test (even with the auth). Make sure you know if they expect you to pay the balance on anything the insurance does not pay. I share this with you as I was originally told they would not bill me for anything residual, but my insurance co only paid half on it and now we are going through multiple appeal processes. The test costs around $4500.
Hope this helps for your next conversations around the oncotype test with the next MO. I think the information from the test is valuable. Information is power.
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I didn't have an Oncotype score apparantly because they only do that on the hormone positive cancers. (from what I've read)
Laurie, that doctor's treatment of you was just plain bad. Even if you have no need for chemo, he should still be compassionate and explain the situation and why he does or does not recommend further treatment. I was sent to talk to a radiologist after my surgery who talked to me a bit and told me that with my good margins that he saw no reason for me to get radiation treatments. I figure it is just normal procedure after surgery to get referred to an oncologist and a radiologist even if the breast surgeon doesn't think you need either of them. The breast surgeon isn't an expert in those areas so it's right to move you on to talk to those specialists so they can help you decide on further treatment.
As for hermits with clutter - sign me up too. It's organized clutter for the most part but still I have trouble letting things go. I'm slowly working on that though I don't think I'd be really comfortable without at least a little clutter in my life.
The heat has been pretty bad this past weekend. I'm almost glad to be back at work today because of the air conditioning. I really need to push my boyfriend to get the portable AC at home set back up. Most of the time we don't need AC but when I was going through chemo last year, I really really could not take the high heat (and we had some record days last year) so we bought a portable one to cool off the bedroom.
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Skittle-I did receive the PM. Thank you so much. I replied. Have a lovely day.
Jazzy-this is excellent information! Thank you so very much. I am learning as I go through this thread of things I need to look for. I am also on the lumpectomy thread and so I have learned a lot there as well. One of the things that dawned on me was the daily radiation treatments. It occurred to me that maybe I would be charged a copay for every single visit. So I decided to call the billing office at the radiology oncologist. And I found out that that is the truth. So it will cost me about $300 a week in co pays for the radiation treatments. They think I will have radiation for about a month. It is what it is, but nobody ever tells you these things along the way. I like to have all my ducks in a row and know what I am being faced with. If we were not our own advocate, we would be so lost. Thanks to all of you for all of your advice and support. As I tell everyone I come in contact with, all of you have been a Godsend to me.
in other news, I am feeling a bit better day by day. I have been doing my pool therapy, and I feel that that is helping. Last night I did a little bit of yoga as well. I feel like all the sitting around is not helping so if I am able to do little movements and exercises I need to start. We find out the sex of my daughter's baby on Monday, and I'm really excited about that. I am sticking with my theory that is it is a girl. People keep telling me because she's carrying out front, that its a boy. I tend to go with that theory for most people, but I still think that is a girl. Its just a gut feeling. We are so excited to find out and I will let you all know.
Last night in Huntington Beach, our team was winning 6 to 2. Our pitcher started to lose it and ended up with bases loaded. They brought my son in to close the game. He typically does not close. Unfortunately things did not go well and they ended up catching up and the game ended in a tie. My husband was texting me every single pitch. It was pure torture. There were so many times that my husband said that the pitch was a strike, but the umpire called it a ball. He said the entire team was in an uproar about it. However, that being said, Nick was still the losing pitcher. The way people see it, it is the final pitcher that is responsible for the loss of the game. That is a hard pill to swallow, but that is life. You cannot know success without failure. They are still doing very well in the tournament and have another game today.
I hope you always sunburn is better. Paige got really sunburned when she went to Sea World a few days ago too and being pregnant that was not good. She said she was using 50 sunblock and applying at every hour, but it still happened. It can be a very bad thing. I hope he feels better.
well I am going to get into the pool before it gets too sunny outside. Wishing you all a blessed and wonderful day. Hugs and kisses,
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CC(Badger?)--welcome, and hugs. Each hermit helps in different ways. Humor, hope, wisdom. They have all helped me so much.
Laurie--my older daughter is a hospital admin fount of wisdom. I am sorry that I didn't know how to answer her questions so she could help you more... (She now works for the Surgeon General in AR, and is just settling in.) Happy, happy excitement looking forward to baby news. Sad to hear of the pitch/loss, but I'm sure he knows he did the best he could and has many great games ahead.
Jazzy, Jinkala--My oncotype is 19 and the MO did not put me in for chemo. He did a LOT of statistical analysis, and found it would make a 1% difference for me. (I have a weird type of bc, and am usually a guinea pig.)
Ooops. Dh calling. Hugs to you all. Happy minions tomorrow, if anyone's going!
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welcome CCF
Laurie sorry about DS....glad you got pool therapy in...yoga good for you!!!
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Hi ladies- we are finally getting some rain here in NM! Monsoons have started and there is some rain around every day somewhere. Looks like my yard got some today too!
Laurie-glad the info helped. The unexpected part of this is the financial cost for things. I went through some initial shocks around co-pays and out of pocket for all the tests. Then I learned to ask a lot more questions up front about my part of the costs so I could make an informed choice. It sounds like you found out some good information about the cost for your rad treatments. Know most any place can set you up on payment plans, even for co-pays, if you need to do that.
CC-welcome to the Hermits thread!
Jink-yes, I believe the Oncotype is for early bc that is estrogen positive. My sister is HER 2 positive like you are and did not have the test either. Like you, she is also getting the herception treatments. I hope the heat out your way is better. It has been a tough couple weeks out west!
Happy almost July 4th my hermit peeps!
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Hi Ladies, Just got back from Chicago after visiting relatives for three days. As a hermit--first I had to stay in a hotel--really just like my own space where I can retreat when I've had too much. Don't think my extended family understands that I am still being treated for BC and I am dealing with the TE. Many times, I had to decline an activity in the three day stay and when I would say my chest, back or neck was hurting from the TE; they did not seemed to understand. I got tired of asking my DR or DS to carry something for me--so I would just try myself. When I got home last night, I was so happy I live alone and was away from everyone. My DS, who drove for the 5 hours, asked to come in and have a bite to eat and I told him--No, he needed to go home--which was another 30 mins for him--because all I wanted to do was get into my house-and close the world out. I've always been sort of a hermit but now that I have BC, I find myself trying to preserve my private environment more often. Living alone after the divorce of a 30 year marriage and don't think I can ever live with anyone again--BC or not! In contradiction, sometimes I find that kind of sad. Well sending positive energy to all on this thread. I am always here but sometimes only have the energy to read. Love all you guys!
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Dwill- thanks for joining us here! Glad you to got to visit family, but sorry they don't understand better. We all have had similar experiences with family and friends, and we get tired of explaining ourselves, so we retreat. There is a lot to be said for hermitage.
I am glad for you that you felt you could say no to them when you were not feeling well, so you could take care of yourself. I hope you enjoy getting settled back into your home. Let us know how you are doing as you would like to.
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CCFW-- I think TE means tissue expanders. I haven't had any bad dreams about any of my doctors, but I have had more than a few nightmares in general. With the amount of stress & anxiety we endure, it is normal to have bad dreams (or so I'm told!). You like your doctor, maybe you should mention the dreams to her? Try not to feel bad, it is not your fault that you're experiencing this!
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Happy 4th to all our American hermits! Hope everyone has a great day! It's raining here so that kind of stinks. We did take the girls to see fireworks last night though.
Laurie, hugs. Sorry you had to go through that
Welcome to all the new faces.0 -
Happy July 4th!
May you all feel freedom today from your pain, worries, treatment, etc. Freedom means many different things to people!
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