The Hermit Club

I bet the cubs are so cute.

Well ladies, I went out and had a good time last night! Had a bit too much wine, but it was worth it. I even danced! I laughed and saw a lot of old friends that I haven't seen in a year or maybe even 2. DH had a good time too.



Going to work on housework today and maybe go to the grocery. The girls are still at the in laws so I should take advantage of the down time. Happy Sunday!

Markat that is wonderful to hear--I'm so glad u just opened up and had fun (maybe the wine helped) who cares u had fun and so did u'r DH and u both needed it.

Jazzy enjoy the cubbies and the zoo and Teka right u guys--keep well hydrated--u'r being super hot right now--Our weather is all screwed up.

Teka

Hi hermits- happy last day of June. The temps here are breaking, but still hot around the west. I heard from my peeps all over the west yesterday- Austin (108), Phoenix (119), Palm Springs (122), even coastal CA well up into the 90s. I heard something on Bill Maher last night on HBO, climate change does not need to be debated anymore-we just need to go outside to see it happening.

Markat- it sounds like you had a really nice birthday. Glad you got out and had some fun. Enjoy your day with DH until your girls return home. You deserve the break to just relax and enjoy the day.

Like many others here, I am working on clutter/piles/purging. Got into a stack of stuff waiting for my attention for awhile. Someone asked if there is a relationship between hermitting and clutter. For me, it is more about many things having to go go on hold (or into piles) to deal with at a later date while I was going through treatment and/or recovering. For me that is the relationship, just getting around to working on my piles now that I am feeling better and stronger. 

Have a good day hermits. Short work week this week, love it!

Hi Slickchickie. Sorry you're going through this I totally can understand and relate. My husband (DH=dear or damn husband) thought that I became such a hermit because I had a hard time dealing with the physical parts of cancer. I had really long hair and had an okay figure, a little overweight but nothing horrible. Then I became bloated, gray and bald. My body hurt everywhere and I hated the "pity" look. Now a year after my double mastectomy and chemo, I'm doing better. My coloring is better and my hair is okay. It's like a fluffball but it's okay. Take it easy and give yourself time to heal.



Jazzy, wow that's hot! I agree about the clutter. I'm the queen of procrastination. Ugh. If I would just do stuff instead of thinking about it, it would get done so much faster!



Camille, I'm sure the wine helped ;-) Liquid courage. I only had a couple people ask how my health was. I just said, I'm doing great! Lol. Instead of, my mom just died, my whole body constantly hurts, I can't sleep and my house looks like an episode from Hoarders.



Teka you are so right!



We're getting a storm rolling in and my neighbor is mowing his grass. Silly men!

I still have days when I feel really pissed at people with two breasts especially if they are eating smoking and drinking what they like or in a nice swimsuit......



I am 14 months on and still hate myself every day for being so mutilated and it really gets to me i STILL get phantom nipple discomfort when there is nothing there

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.

July, I should start to see fireflies and hear whip-poor-wills at night.

If my memory serves me correctly, the threads slow down during the summer.

I only get scared after dark if home alone.  

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

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.

I'm sure A-hole will send a bill.

Laurie, you simply ask for another doc.  I'd never let anyone like that touch me!

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

Welcome Leslie!