How is this going to help me?

Breast Cancer is a hard diagnosis....in any form. If you have pre cancer cells, have a lumpectomy and no chemo, a lumpectomy+chemo+ radiation , a lumpectomy+chemo+radiation+reconstruction, lumpectomy+re-excision+mastectomy+reconstruction+chemo, if you have cancer in your lymph nodes, not in your nodes......the diagnosis is just hard.


You wonder how to manage it, how to manage your family , how to the manage the doctors, how to manage your job , how to manage your friends , how to manage your life. What happens now?


You got to do research, you got to feel empowered, you got to listen, you got to trust that this will work and if it does not you have to have the courage to not give up or the courage to give in.




Hence, this is where my skill set comes into play. Not necessary in the order presented but certainly the elements displayed.





For real for real this is a huge list. I mean what exactly is active listening. I mean for real, for real. Well what I am going to do , it provide you with the definitions of of the terms displayed and wrap them up with what most website ask you to embrace when diagnoised and do a contrast and compare.

• Active Listening : is a skill set in which you ACTUALLY and INTENTIONALLY focus on what the other person is saying. This skill set helps when you are listening to the medical experts that are there on your team. This skill when strengthen allows you to actually Hear what the doctors/nurses are saying , not what your internal fears may be attempting to over come and overwhelm.

• Asking Clarifying Questions : These are simple questions of fact. Now what does this really mean? You as the patient have to and I really mean HAVE to understand what they are telling you about your cancer. This does not have to do with education and that the doctor has all this expertise or the nurses have all this experience with cancer patients. Yeah, ok. ..but damn it you are getting ready to walk down the cancer Road and you need to know the route. For example if they tell you have a certain type of cancer, ask them to explain it in terms that YOU understand, not your partner, not the nurse, but you! If this is hard for you to handle at this moment. Make certain that who ever is with you have the courage to ask these hard questions and get answers so that they can understand and subsequently explain it to you.
  





• Encouraging the other party to talk, to describe the problem : Some doctors just state the facts! I would encourage you to keep this doctor or nurse talking , in this 7-11 type medical world it is important that you make certain that the darn doctor knows what he is talking about , not just quoting stuff out of a medical book or from recent lecture or conference he attended . Does he or she really comprehend what they are spouting off to you.....hmmhhhsh ......if you keep folks talking they can and will trip up if they do not know anything....ala Sarah Palin....:)
  





• Clarify the persons description of the problem : Can you do this? Are you able to put this person problem in a nut shell.
  





• Rephrase their statements-show you understand and can grasp the concept or idea they are trying to convey: This is when you take a minute to think....Remember a diagnosis of cancer is a tremendous burden. This is the biggest fight of your life. These folks (doctors-medical team) are throwing stuff at you ..You need to slow them down and see if you can sort through this cloud of information and rephrase it so that you understand and they know you do .
  





• Ask questions and invite the other party ask questions: Ask questions and show that you are open to questions as well. For in order for your medical team to develop a effective treatment plan, they must know everything and I mean everything about you. On the flip side, you must feel comfortable enough to question your medical team. Their treatment plan, their choices of techniques, medicines, options and have they been honest and honorable about their ability to know how to treat your particular type of cancer. If they do not invite questions or give you a lot of BULL Sh*& , if you try to ask questions......well Sweetie is time to not walk but run for the door! Remember as I said earlier , you are the project manager of this life here. You are responsible for ensuring you got the best folks on your team and the best experts you can find. You have a right to question and demand exceptional treatment. However, you will not get it if they do not interact with you fully.
  





• Give feedback and ask for feedback: We have now moved into the project manager role in full effect! You got to give feedback, are these medications making you sick? Are u able to eat? Are you having financial difficulties? Are you depressed? Your medical team needs to know these things. This is no time to be a martyr. You do not walk on water and teach others. You are made in God's image but you are not God! If you hurt mentally , physically, or emotionally, let your team know. They may have medicines, could refer you to social worker or a mental health professions. There are options & opportunities! Now you also got to ask for feedback, is the treatment working, what are my options, what are you thinking, what should I expect. Remember your team is great but they are human. They are not God , although they are made in his image. Although you may feel this, you are not the only patient. Ask them, ask for the copies of your blood work, ask what does this mean, why are you doing this. I would propose the more you know the less fearful it will be....

• Be honest: Let you medical team know what is going on with you. Provide them with your full medical history! Did you drink, smoke or do the the boogalo! If you do not tell them everything...how will they have the background prepare a effective plan of action. This is not the time to hold back, this is the time to be forthcoming and open.
  





• Be tolerant: Respect the opinion of your teams, hear their guidance, hear your family, you do not have to agree ...but learn to respect and tolerate different opinions and views.
  



• Be open to new ideas and views: Wow! this is a hard one but one that you should consider. There are a lot of ideas and views that will be thrown at you. Everyone has someone in their lives who has gone through breast cancer. Be open to what you want to hear and learn to shut it down if you do not want to hear it. Being open does not mean being a door mat. Even though you are sick for the most part you have your mind and you have the ability to voice your views, if you do not...You need to have a trusted partner who will!
  



• Acknowledge the other persons perspective: Remember you are the project manager of this very important project...this also means that you are most likely not the expert but you surround yourself with experts...so be sure to listen and acknowledge the others views as being important. Especially your partner...(husband, wife , friends, family or friends with benefits :)
  



• COMMUNICATE WITH A PURPOSE: This is so critical.. Do not just talk to be talking. What are you attempting to accomplish, what do you want to know, what are you trying to convey? This is when you do your homework...u have an absolute right to speak your peace, demand the best care and demand the best doctors...if you do not know what you seek ...how will they provide u with the right service.
  



• Consult with others when planning to communicate: This is where , T was critical in this project. I read, researched and consulted with him, my sister-n- law who is a nurse, my sorority sister who is a nurse and my friends. However, the final decision was mine and mine alone. It takes time and courage to get here...but you will get there.
  



• Consider the timing, setting and social climate -self explanatory
  



• Be aware of your tone, expression, voice volume : Critical....your tone and the way you come across will provide you with the best help or the worst. Treat everyone with respect and reverence. You will be surprised who will help you get through those dark dark days.
  



• Humor : This is how I dealt with a lot of dark days. Self effacing humor. I laughed at my self. I told jokes about what was happening. Sometimes my humor was dark ....some times it was light...but I laughed a lot more than I cried! You will be surprised where you can find the humor if you look hard enough.
  



• Know what you want: I wanted the best doctors, the best treatment, I wanted to be treated with respect, I wanted my medical team to be honest and open with me, I wanted my team to communicate with each other, most of all...I wanted to live for me ....and than for my Terry, my mom , my brothers, nieces and friends....If you know what you want , you will do whatever you need to get it.
  



• Look for the common goal : the common goal is to make me well...However, I want to be informed and I want my team to be informed and to feel free to inform me....
  

• Transfer yourself : WOW .....this is hard for doctors to do...and for patients to want to do and for families to do. But it must be done. How are you as a doctor going to be truly empathetic ....with your patients...if you have not tried to transfer your self into their shoes....how would you want to be treated ..if you had cancer...the same for the patient..u have cancer but that does not really give u the right to be disrespectful and hateful...and unforgiving. But you can be mean :) hehehehheheh ! What about the support group....it is frustrating to attempt to support someone who you cannot help, u just cannot fix what is wrong..transfer yourself into their shoes and perhaps you will have a little more patience.
  

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Alternative Dispute Resolution Tool Box and Breast Cancer

Alternative Dispute Resolution is my passion. It is a skill set I have strengthened and honed over the last 9 years. Alternative Dispute Resolution includes the following: mediation, negotiation, conciliation and arbitration. However, it is not these elements that have helped me as I and T battled breast cancer, it is the skill set that is needed to be a efficient ADR professional.

• Active Listening
• Asking Clarifying Questions
• Encouraging the other party to talk, to describe the problem
• Clarify the persons description of the problem
• Rephrase their statements-show you understand and can grasp the concept or idea they are trying to convey
• Ask questions and invite the other party ask questions
• Provide feedback and ask for feedback
• Be honest
• Be tolerant
• Be open to new ideas and views
• Acknowledge the other persons perspective
• COMMUNICATE WITH A PURPOSE
• Consult with others when planning to communicate
• Consider the timing, setting and social climate
• Be aware of your tone, expression, voice volume
• Humor
• Know what you want
• Look for the common goal
• Ensure your actions support your communications
• Transfer yourself
• Communicate for today and tomorrow
• Be accountable
• Manage your pride
• Self-mediation
• Five-second Rule

This is a skill set , I have honed and perfected over the years. This skill set has helped me to to gain and keep personal and professional relationships. This skill set was the foundation for my business Opn-door Communications. This skill set helped me with my mother's medical challenges. This skill set was going to help me mediate the biggest conflict of my life: Breast Cancer!

Back to work & Reasonable Accomodations

Now it is back to work boys and girls. I have chosen to return to work on 06/13/08. It was a Friday. I figured not a lot going on...Fridays are normally pretty slow at my office.

Now mind you , I have been in contact with my supervisor all through this process. I have asked and requested a back to work plan. I knew I could work, however I knew that the side effects of chemo + work + the 2 hours round trip commute = Vickie getting really, really sick again.

I felt that my office would work with me ...as hello I work for the state. However, my gut told me otherwise.

I get back to work and my supervisor is very empathetic. She is concerned for my health. I am concerned for my leave and my pay. I have been on disability for 90 days and I have been getting 100% for the first 45 and 80% for the next. I was able to make up the difference with leave I had in the bank.

However, I had to go back to work. I could not exist on 60 percent of my pay. I would go under badly.

So we get empathy and sympathy from my superiors but no concrete information about whether I can telecommute for some of the days after chemo or a couple of days a week. Nothing, just blowing me off. Well I worked that next week, I had put my request in writing a month before, asked about it 2months before and now it was down to the line. I cannot afford to take a week off every month. I still have doctors appointments and I need to be accommodated.

Now my supervisor and I attempted to discuss this earlier and we got into a heated disagreement. As she reminded me that they worked with me and supported me while I was out. I was like I had cancer, I had disability leave that was approved and I was sick. You did me no favors mate. This is what you had to do as my supervisor if you wanted this work to get done. I was hot, very hot. Disappointed and disillusioned.

Well it came down to the wire. My supervisor, her boss and the state human resources rep got together and spoke with out me involved. As they stated that had another employee they had to consider as well. Fine no problem.

Go into to speak to my bosses and they politely tell me I cannot telework in lieu of being sick it is in the policy. I am like WHAT! I am not trying to take it in lieu of sick , leave it is my right I am covered under ADA ! I am like no I do not think so. This is different , I experience side effects from my chemo & the travel would make this worse!!

They were like there is nothing we could do. I was like ok, lets speak to the human resources rep. So I called her. She went on and on about perhaps I came back to early. I should have stayed out longer. I was like no, I need a back to work plan. She was like there is none. I was like it says so in ADA and the EEOC! I am getting even angrier. I am trying to remain calm. I said I will grieve this than. She says to me , I have nothing to grieve. I said fine I will go to the EEOC. She was like oh! Let me talk to my EEO rep, I said talk him. I will see you within the hour.

By the time I got there, she changed her tune. I did as well. I learned I have been using the wrong terminology. It is not back to work plan , it is reasonable accommodations for folks with disabilities. The EEOC even has a website that is titled Questions and Answers About Cancer in the Workplace and the American with Disabilities Act.

Once I got there, we were able to talk. She did not apologize, but she did acknowledge that they were going about this the wrong way. She than stated she would talk to my leadership team and strongly encourage them to negotiate with me.

So we went back to the table we negotiated the following the day before I was to have chemo for the 3rd time. The Friday I had chemo was a sick day, the Monday afterward was a sick day, the rest of the days I would telework. If I were to go to the doctor during these days, I was to submit a leave slip! Ok, ok! simple right. My supervisor advised, she did not have time to write up the contract. So I shook hands on it. WRONG MOVE!

I than had my 3rd chemo. Had lunch with my class mate, got sick , though not as sick but sick enough and emailed my supervisor on Tuesday to tell her I started work. I wanted her to transfer my calls to my cell as per our agreement.

I than worked as agreed. Came back to work on Monday and she asked me to submit a leave slip for Friday, Monday, and Thursday. I was only to telework on Wed and Friday. I was like no that is not what we agreed upon. She was like than she would go to speak to her boss who was also in the meeting. I was like ok.

I go to speak to her boss and she was like that is what we agreed to. I was like that is not what my notes say. She was like that is the best we can do, I said nope. We will go back to the table. As what you are saying right now is that I am a liar or on some type of drug that makes me lose my memory! I was MAD ! I was aghast at how I was now being treated. I again dropped the ball, I should have written it up exactly like we discussed the same day we discussed it. I also should have had someone who was neutral in the room.

So we went back to the table and re negotiated another agreement. This new agreement caused me to lose a Thursday. I had to renegotiate a trade for the month of July and for the month of August, I had to give sick leave and for my final chemo in September I had to come in, which subsequently caused me to be sick.

I would ask all survivors to attempt to negotiate this before hand. The term is reasonable accommodations, which is your right to request under the ADA. You are requesting this because your treatment and work has substantially limited your abilit to care for yourself, this is why it is a disability. What you have to trying to express or explain is that you are not saying you are to sick to work you are saying that you are still recovering from treatment and your normal work schedule in addition to you commute and other duties has substantially limited your ability to care for yourself once you return home. This is a hard pill for folks to take. They think you are trying to get over, trying to shirk work, trying to use your illness to your benefit.

Well if it is here why shouldn't you? Now my supervisor and her boss attempted to compare my illness to another coworkers pregnancy. Ah how dare you, I had cancer! This was not a choice! She chose to get pregnant, do not ever put me and her in the same sentence ..our conditions cannot and should not compare.

Again it is important to read up on your rights regarding returning to work when you have been diagnosed with cancer...Information is power baby, information is power!

I am going to list some websites that will be of a great help to you:

http://www.eeoc.gov/facts/cancer.html

http://www.cancerandcareers.org/

http://www.cancer.gov/cancertopics/life-after-treatment/page7

http://www.jan.wvu.edu/

http://www.ada.gov/pcatoolkit/abouttoolkit.htm

http://www.fhcrc.org/patient/support/survivorship/strategies/employeerights.html

These links above should get you started. However you must remember in order to negotiate you must be informed, calm, structured and know what you want and are willing to live with out.
Also you must know that if your caretaker feels that you are not being treated fairly THEY have a right to file with the EEOC.

If you are reading this and you have a friend or loved one who is not being treated well at work, you have a right to file with the EEOC as well! This is a tough enough fight without the drama of folks at work questioning your ability to work or your rights to reasonable accommodations!

2nd round of chemo and I am bald

Just when I got my strength back! Just when I got my taste buds back! It was time for me to take another round of chemo. June 6th and I am sharp again. I have on a jean pants suit, funky hat and funky gold heal!

My class mate and one of my former coworkers + adopted big sister were jockeying to bring me lunch. My adopted big sister won out so my high school class mate said she had next.

Now again , I had to try to remember to take my regiment of medicine! A set before chemo, a set during chemo and a set after chemo and for 2more days after that.

OK this is how it rolls the first set is called: dexamethasone , I would take this medicine 1 tablet 2 times a day before chemo, the day of chemo and the day after chemo.

Next...if my labs were good I would take the Emend the day of chemo, day after chemo and the day after that.

I would than start to take the Zofran around the clock every 8 hours for 2 to 3 days after I have finished the Emend and Dex. All of these medicines are to combat the nausea that chemo causes. With out these medicines, my times would be worst and they were bad enough!

So my labs were good and I got an opportunity to read my book, listen to my ipod and visit with my girlfriends who came by!

While getting the chemo it was a good experience. I did not hurt, I ate junk and drank juice. It was cool. Than I went home. I laid on the couch and started to feel weak.

Earlier that week I had made some sloppy joe (turkey). I also made lemon fried chicken. So I decided to have leftover sloppy joe. Bad mistake. It sat on my stomach like a log. I got so sick , I forgot to take my Emend on Sunday.

Baby, that was the worst mistake. Because once you forget the Emend and get sick, you are ass out.

Man, I thought I had died and gone to hell! Nothing relieved me. I was nauseated , however I could not throw up. I just laid there on the couch and withered.

Now you remember I said that I would remember to take my medicines on time. Well it is easier said than done.

The difference this time around, was the recovery was quicker. Instead of 1o days, it took 6!

Now it was time to return to work....as Tori Spelling would say Oy!

Black, Beautiful and Bald

I finally decided to go bald. I had T call his barber and he made an appointment.

Early when I was diagnosed , my plan was to go to my hair dresser and bring a bottle of wine and make a big production out of it.

However , after 5 surgeries and one round of chemo, I was just ready to cut it off.

Well I went to T's barber by myself. Now you may wonder why T did not go with me. I am not sure why, but it did not matter, sometimes a sistah got to man up and do the damn thing by herself!

So I went and Ed the barber started to cut. He asked if I wanted to leave a little on. I was like nope lets do the damn thing. So he cut it all off. All of it.

I felt funny. I felt really funny. I looked at in his mirror and than in the mirror in my car.

I went straight home and showed T.

I did not cry at first. Than I cried a little. I looked exotic! Did not look bad at all.

But I had to get used to it.

I had scheduled a mediation and decided I would go. So I did!

I felt funny again. Like everyone was looking at me, because I was bald. It was a strange feeling so I decided that I would tell you upfront: " I am bald , because I have cancer and chemo was taking it out! "

Look Good Feel Better

That particular weekend was wild. Now it was time for me to attend the Look Good Feel Better program, which is a program sponsored by the American Cancer Society to help women who have cancer feel good about themselves.

The concept of this program is wonderful. They teach you how to wear wigs, scarves and make up. I decided to go and wear one of my new wigs.

Wearing a wig for me was difficult, I felt funny. Felt like everyone was looking at me different.

This meeting was held at the Cancer Institute at Riverside, so I went to see my nurse navigator Yvonne Pike. She almost did not recognize me as I had on my new wig.

I felt like it was a hat I had to show it off.

We than got in to the discussion of wigs. I had made a comment that the wigs in the Breast Cancer Book are not quite up to par for sistahs of color. She asked the question why? Now what I love about Yvonne Pike is that she is a open honest curious woman. You can tell that she is the type of person who wants to know so she can be in the know. She is not easily offended and is open to productive dialogue.

I explained that is it not just the style of the wig it the colors, the tones if you will that make the difference. African American Women are diverse women with wonderful shades that range the gambit. From the color of butter cream to rich , full mahogany to spicy pecan tan.

The wig colors that I saw in the booklet were harsh against our rich skin tones and the styles were not up to date or hip!

I also turned her on to a website called Especially Yours, this website featured wigs that were made for and used by African American Women. Now it is most certainly not the only website but it is one of the biggest with the most inexpensive wigs available. Yvonne was like cool, she was going to take a look at it and pass it on.

I than decided to check out the Look Good Feel Better workshop. It seems as if no one was there. I met 2 other ladies and we talked for a minute trying to see if anyone else would come.

I thought they were cancer patients and they thought I was a volunteer. After we had a good laugh we just decided to dispense with the formal program and have a girls day with me being the featured girl.

I than told the volunteers about me losing my hair in the shower.They seemed like it was a sad story. I was like nope, it was funny. So laugh! I was like look, I know that cancer is a serious disease and I am going to treatment that is very, very rough. However, lets laugh when we can and running my finger through my hair and it moving like a knife through butter was funny!

It was great. These 2 ladies were both hair stylist who had been trained to works with cancer survivors. The make up was awesome! MAC, Este Lauder, Lancome...I mean top of the line products. I was impressed.

As I already knew how to put the make up on, I just went ahead to put it on and we talked for about an hour or 2.

It was a great experience and I plan to go back and attend a full workshop ...just so I can see the whole program in action!

Like Buttah Baby

The next day, I was washing my hair in the shower with baby shampoo. This is what they recommend that you use. I do not know why, but hey what a great advertisement for baby shampoo.

Anywho, I am washing a way and than it comes. I can feel a slip. Like there is not grip in my hair, it is short but not that short.

I feel skin...

I jump out of the shower and I scream for T. He is like what is going on. I look in the mirror and baby a good 5 inches of my hair is gone from the right side of my head.

I mean it is gone. When I was washing my hair, it moved with my fingers like a hot knife through butter....it was gone. It was also pink. The big ass spot in my head was pink. Pink with moles. Who knew. I thought it would be the same color as my face. Pecan Tan...nope it was pink and spotty!

I did not know how to feel. It was sad and funny all at once. I mean ha, ha, funny. Not like odd funny. I started to laugh and cry at the same time.

Than for some reason T and I started to argue. I do not even remember why we argued , but he pissed me off and I decided to go out. Now mind you this was the first time I had driven more than 6 miles since middle of March and it was now the 1st of June.

I wanted to go get some Chinese food and not just any Chinese food I wanted PF Changs. I also did not want anyone to take me. I wanted to drive so I did. I put on a hat to hide my the big ass bald spot in my head and I rolled.

I went all the way to PF Changs in VA Beach. About 25 miles one way. So that is about a 50 mile trip. No problem, remember I am super duper woman! I can do anything. Yeah right!

I went out there and I had lemon chicken , white rice and a lemon drop martini. Hey girl has got to get a drink in when she can! It was good, very good. I than turned around and came home.

By the time I got home I was exhausted, mentally, physically, exhausted. Exhausted to the point of pain. The point of pain!

Short and sassy and then we start to shed!

About 2 weeks after my first chemo, my head started to shed. I had my hair dresser cut it short about a week before chemo and than I had T's barber cut it again after my first chemo.

So it was pretty short and cute.

As I was not working at the time, I had the had a project. I had to get rid of the fence in the back, it was old and torn up. T as always wanted to wait, he has a terrible procrastination habit....it drives me CRAZY.

I did not want to wait. So we started the project! We went back and forth to home depot for about a week. We finally got all the stuff on Memorial Day weekend.

While in Home Depot getting some odds and ends. While I was waiting in line I started to rub my head. Now this was not unusual since I cut my hair, I had to rub it. Had to ....it just seemed to call my hand.

Anywho, I rubbed for the 100,000th time and this time around I noticed there was something in my hand. Oops it was hair. Quite a bit of hair in my hand.

I looked around to see if anyone else noticed that my HAIR had come OFF in my hand. Nope, it was unnoticed and since I am really ghetto. I dropped it on the floor and kicked it under the counter. (heheheh)

Than I went home and told T my hair was shedding.

I than called my girlfriend from Suffolk., who is creating a chronological journey for me in photographs. She thought of this idea! I thought it was great and since my last surgery, she has been coming over at least once a month to take pictures of the missing/growing TATA and what ever we deemed to be important.

She also brings her lovely and very intelligent 12 year daughter , who I adore as well to visit.

Well I called. I said T (she is also a Terry..but we call her Terry P to distinguish from my T---ahh so confusing) you got to come by, I got my hair cut short, got my wigs and my hair is shedding. She came ready with the camera and took pictures.

She took pictures of me in my 3 wigs ( do not think she liked to many of them, neither did her daughter ) . No harm no foul..I kind of liked them.

Recovering from Chemo

The first chemo was a Mother for you. I felt like I got hit by a brick wall. Now it is time for recovery. I tried to walk a little . It was hard, I felt weak in the knees { like SWV hehehhe}
But each day got better and better. I almost felt like my self. Than the hair started to shed.

Mind you , I had cut my hair off before chemo started. I had gotten 3 wigs. I was ready for the bald look ....I was actually looking forward to the experience. Go figure. I wanted to see how I looked. Would I really do bald? Or would I use wigs?

Was I ready for the experience? Really ready.