Monday, October 28, 2013

A Child's Pain

Oct 26, 2013

In the dark, silence of the night, my 10-year old daughter came to me.  I felt her presence before she spoke. Through the darkness, she quietly asked, “Mom, are you awake?” 

I said, “Yes, what is it hun?” 

Her voice was breaking and she said, “I was thinking of something I shouldn’t have been.” 

The dim light in the room allowed me to see the emotions of her face.  She was clearly shaken and scared.  As I looked at her, the emotions she was feeling peaked.  The moment her face let go of those emotions, I grabbed her, and she fell into my arms.  She needed me to stop her pain.  We held each other tightly.  Quietly, our emotions fell down our faces. 

As we held each other, I tried to figure out the best way to ask what was upsetting her.  But, I knew.  She had done this once before.  It happened in the same way.  I had had a conversation on the telephone with my sister about my condition.  The same type of conversation had occurred that night.  She obviously had paid attention.

I know I didn’t say anything she was not aware of concerning the nature of my cancer.  She knows that once the drugs no longer work, I won’t get better although she holds onto the possibility.    

She has heard me talk with others about my situation before, but tonight she couldn’t part from it.  It was hard for her to put it away in its little box to be left alone, to be dealt with later.

I asked her if she wanted to talk about it.  She said, “No, I don’t want to talk about it. I just needed a hug.” 

After a few minutes, she said she was better, and she lay back down to sleep. As I tucked her covers in around her, I let her know that no matter what she is feeling or thinking she can talk to me about it.

“If you are having bad thoughts, it doesn’t make you a bad person.  Everyone has bad thoughts,” I told her. “If I am ever talking to someone and you are hearing something you don’t want to hear, you can ask me to stop.  Don’t be afraid to ask, I will stop.”

I did not ask that she reveal her private thoughts to me.  She was not ready.  They were better left under the covers for now.

I, too, lay back down to sleep.  But, sleep I could not.  My mind was filled with questions.  How could I stop her pain? What will happen when I am gone?  Will she get the same emotional support that I have always provided for her?  She is being impacted by my illness and eventually will be impacted by my death.  What can I do?

The reality is I can’t stop her pain.  I can’t be around to make sure her father does what I have asked him to do.  I can’t be here to make sure all her needs are met.  There are no guarantees that her father, sisters, brother, and grandmother will listen to her as she weeps.  I can only hope that everyone around her will do what I need them to do.  To make her feel safe, secure and make sure she knows that someone will be there to care for her.  And, to make sure she knows that if I could have stayed, I would have.

She probably feels helpless in the same way I do.  She can’t fix it.  She can’t make me feel better.

Hugging her in an effort to put pain and fear in a different place than at the forefront of her thoughts and telling her how much I love her is the only thing I can do.  I will do that until my last breath.



Tuesday, October 22, 2013

Chemo #9/next CAT scan, chest pain

Chemo #9 

I made it through Chemo #9!  And, I am feeling pretty good this morning.  Now if I could only stay this way…

Yesterday, I had expected to have an appointment with my doctor, but instead I saw a Physician’s Assistant, Ms. P.  My doctor was in with another patient and then needed to eat lunch, so I suppose they felt like I had been waiting long enough to see someone, which I had, so Ms. P. jumped in to help.  At the end of the appointment Doctor R. came in to see me, so I was able to ask her one question that I have asked before but can’t seem to let go.

After the introduction, Ms. P. looked over the sheet that I am asked to fill out at every appointment.  It is yellow and has questions about my health.  The instructions ask that I rate each question from 0 (none) to 4 (worst).  The questions ask such things as, Do you have any pain?, If so, where?, Do you have diarrhea or constipation?, Any vomiting?, Chills?, Fever?, Hair loss?, Difficulty breathing?, Numbness/Tingling?, Urinary Pain?, etc.  Sometimes the person seeing me looks at it, and sometimes they don’t.  Today, Ms. P reviewed each question.  She stopped on the one that caught her attention.

“Tell me about your chest pain,” she said.

Chest Pain
On October 13th, I awoke with soreness in my back on the right side along my back ribs.  Every time I would breathe deeply, I would have chest pain.  Initially, I thought I must have slept in such a way that caused my muscle to remain tense and wouldn’t relax.  The next day, the back pain was gone, but I still had the pain when I breathed deeply.  The pain would radiate out from the center of my chest and I could not determine whether it was coming from my stomach or my lungs.  It did give me a bit of a scare because my brain was giving me images of my chest tumor between my lungs enlarging.  I kept thinking please don’t be that, it is way too soon for me to have to face what comes next with that devil.  I was pretty confident it was not a heart issue.  But, because it was lasting for so many days, I was beginning to think I needed to have someone listen to my lungs to make sure there wasn’t any fluid accumulating from further lung metastasis.

I explained to Ms. R. that I called the Nurse Navigator on Thursday.  She felt like my chest pain was due to my stopping my inhaler.  I hate using my inhaler because it causes me to be so hoarse that it makes it difficult to read aloud to my 10 year old.  I have always loved to read to my children.  But a paralyzed vocal cord from my cancer pressing on the vocal nerve, breathing issues and the need for an inhaler and sinus drainage from the allergies makes my speaking voice weak and makes reading and indeed talking difficult.  The extreme hoarseness is not consistent, I am so thankful, but lately it has been troublesome.  So I stopped using the inhaler in hopes of having a stronger voice.  Well, because of that, it seems I may have brought myself some unnecessary pain.  As bad as I want to, I can't seem to do without the inhaler.  Again, I started using it.

A few days later, and I had relief!

Ms. P, the physician’s assistant, and I discussed the chest pain and she agreed that I need to have continued use of my inhaler. My allergies must be really bad right now because when I talk it sounds as if I have to take a deep breath at the end of every sentence.  My sister noticed it when I spoke to her on the phone the other night as did Ms. P. noticed it on this day. This has happened before I knew I had cancer.

Ms. P. also felt that my stomach could have caused some of the pain since I have been complaining of that for the last couple of visits.  She suggested I take some Pepcid or some other over-the-counter medicine. The steroids and the chemo are hard on the stomach.

Before she listened to my lungs, we talk about the rest of my list of questions.  I am always prepared with a list of questions or plans to be made.  During the weeks between appointments, items pop into my head and I write them down. 
Next CAT scan
We needed to plan for my next CAT scan.  This will look at my neck and chest to hopefully see reduction or stable cancer which is good too.  The abdomen was looked at last time and was clear so this time it won’t be looked at.  I will have the results at my next appointment which is November 11.

Testing for Herceptin resistance
My next question stemmed from the research I have been doing on the internet.  I have found information about a study that was looking at the affects of curcumin which is found in the herb turmeric.  The study broke down the different cancer subtypes and noted the response of each to this treatment.  (The initial results had some good responses but more research is needed.) One line was an SK-BR-3-hr which was an ER- Her 2 neu + (My type is ER- Her2 neu+ but I have no idea if it is the same breast cancer line. ).  This type is Herceptin resistant.  I wanted to find out if my cancer could be tested to see if it was Herceptin resistant since this targeted therapy is part of my treatment.  Ms. P said that this testing was not available for commercial use.  So I guess I won’t know about the resistance unless it is seen on the CAT scan.  It seems like this would be very beneficial information to have, but only clinical trials make that available for patients apparently.

Siemens Serum Blood Test
Also, in my research I discovered the Siemens Serum Blood test.  Christine Druther, founder of the Her2neu support group website highly recommends this test to check her serum levels, of her now in remission, HER 2 neu cancer.  If the serum levels are higher, it would appear her cancer was growing or had returned.   This is the second time I have asked this question.  The two medical professionals I have asked did not know about this blood test or perhaps the name is what they were unfamiliar with.  As I was talking to Ms. P I realized that this could in fact be a tumor marker test.  She said it could be.  This morning, I checked my thinking on the internet, and I found out that is what it is.  Question answered.  I won’t be getting this test because this group of doctors in Chapel Hill see flaws in this testing and rely solely on imaging to see cancer treatment responses.

MUGA Heart Test
The MUGA scan that I was given at my last appointment to see if Herceptin is damaging my heart was at 61%.  This is an acceptable range but is down from the 66% heart function of three months ago.  This troubles me because it is down, but it may go up a little at the next MUGA scan in 3 months.  As long as it is between this 66 and 61%, things are good.

I have been thinking about eating grapefruit lately, but I am aware of its negative interactions with many drugs.  So my next question dealt with whether or not I could have some.  I love grapefruit. The answer to my question was just as I had expected.  It figures that the Taxotere and some of the other drugs I take on an as needed basis metabolize through the same pathway in the liver as grapefruit.  So it will be best if I avoid it. Darn.

Next, Ms. P. listened to my lungs and felt for enlarged lymph nodes.  She heard no unusual sounds in my lungs and said they sounded clear!  The chest pain I have been experiencing is not from fluid in my lungs.  That is a relief.  And, she couldn’t feel any enlarged lymph nodes in my clavicle area. That is another piece of good news.

My Esophagus
As the appointment came to a close, Ms. P. said she would go find Doctor R. and see if she could see me for a few minutes.  She left and returned with Doctor R.  Doctor R. sat down while Ms. P. stood. I decided to ask her the question that has been simmering in my brain especially when I have any kind of chest pain.  The mass in my chest brings horrific visions of what could happen to me if it enlarges.  It could constrict my esophagus, compress the vein farther that it is next to plus begin to compress and the artery as well.  Again, my research on the internet may not always be the best thing for my mental health, but it helps me prepare for what I could face in the future.

I asked if she knew of any cases where the cancer was removed from this area. (Cut out like cancers are cut out of intestines and then put back together.)  I was thinking that if it started to cause problems that removal seemed like it would alleviate these problems more permanently than other treatments.  Doctor R. said that my tumor’s position in the mediastinal area butting up to my esophagus is not very common and she cannot predict if it will stay the way it is or grow.  Surgery is not an option as this has not been shown to extend life.  The esophagus is not flexible like the intestines and it is secured to the structures that surround that area making it extremely difficult to reattach.  Patients, especially those with esophageal cancers have to have all nutrients taken in through the stomach after such a procedure is done. She did say that we may not have to deal with that issue for two years. (What? She said 2 years, never has a number been given to me, so seems I may live for 2 more years! ) But wait a minute, I thought no predictions could be made.  See, I know she has in her mind what she expects to happen based on her experiences. Of course she went over what things would be done if it ever did cause problems such as swallowing difficulty.  Radiation would be done if no chemo was shrinking it rapidly enough or at all.  And, stents can be placed to stop narrowing of the esophagus, vein, or artery.  Or the esophagus could be stretched to allow for easier swallowing.  (Probably not stretched too far since it doesn’t stretch easily.) I read these procedures can have complications.  Yikes.  She told me to try not to worry about that area because the cancer may not grow.  It may metastasize to another area that could be more life threatening. Oh, that was comforting although true.

Side notes:  I have noticed that I have not recovered as easily from the last two chemos as I did the previous seven treatments.  By the third week, I was pretty close to feeling like my old self, but these last two I am not quite there.  Chemo, what fun.  

My hair, interestingly, is thickening as it grows. Now it is not the thick head of hair that I have always had, but hey, if it keeps this up I may be able to walk around without my hat or bandanna.  The hair in the front top of my head doesn’t look quite as nice as the sides and back.  There is hair in that area but the color is grayer than the rest of my head so it looks balder but really isn’t.   

Bye Bye Chemo #9.  I hope my scan looks good so Chemo #10 can KILL more cancer!   

Saturday, October 12, 2013

Breast Slang- It's October!

It is October. The color pink is everywhere announcing that Breast Cancer Awareness Month is here.  In many cities across this country, organizations are finding creative ways to raise money for research to help individuals get screenings, help those already diagnosed, and to increase knowledge about breast cancer. I said creative ways, but the adjective I really meant to use is…VULGAR.

A few days ago, a man’s voice came from my car radio telling the listeners that it was Breast Cancer Awareness Month. He explained that we all needed to remind the women in our lives that it was time to “touch your titties”.  It wasn’t the message of touching breasts that bothered me. It was the use of the word “titties”. Why did the people responsible for this advertisement think this was appropriate? The fact that the word “breast” defines the type of cancer getting attention this month causes some well-meaning individuals to trivialize the seriousness of this disease. In their desire to be creative, slang words are chosen for the word breasts. Of course woman and men need to feel their breasts in an effort to save their own lives, but to call this vital step “touch your titties” is unforgivable.

In my experience, these slang terms were often uttered by men using them to describe breasts as sexual objects. Often these slang terms have been used to embarrass or demean a woman. I remember in school hearing a small breasted woman teased by an immature boy with his rant of “over the shoulder BB holder”. Large breasted woman I am sure have experienced the occasional, “My God, look at those knockers”. These terms give the impression that a woman’s breasts are separate from her actual body and perhaps not her breasts at all. It is just nauseating. 

Slang terms such as titties, boobs, jugs, and puppies have made their way into these campaigns with hardly a protest from anyone otherwise I believe a different name would have been chosen. I suppose people think this language is playful though I find it highly offensive. Perhaps the titles are allowed to remain because of the attitude that if it is for a good cause then it must be okay.

My breasts, or rather their cells, have been trying to kill me for years. So when I hear “Save the Tatas", "Touch the Titties” or "Save Second Base" for the promotion of breast cancer awareness, I cringe. Who cares about saving the “tatas”?  Women can live without their breasts. Why don’t these titles suggest saving the person? The person is in jeopardy not her breasts!

Despite their names, the campaigns do collect money for uninsured or under-insured women, help women get mammograms who cannot afford them, and help educate people about this disease. Of course this is wonderful, but I feel offended with their slogans:  BBQ for Boobies, Mugs for Jugs 5 K run, Carolina Tatas Rugby Tournament, Run for the Tatas 5 K/walk, Boot up for Boobs, Barbells for Boobs from CrossFit, Bowling for Boobs, Check Your Puppies, Tweets for Boobs on Twitter, and a charity called CoppaFeel.

Race for the Cure, Breast Cancer Coalition, Making Strides Against Breast Cancer, and the Pink Ribbon Project have more respectable sounding names. A campaign urging you to “Check Your Puppies”…What self-respecting woman would think that was cute?

Campaigns with breast slang are not the only reasons to be alarmed. The Rethink Breast Cancer Charity helps young people affected by breast cancer, and in their effort to find a different approach to education, this organization created an app for their early detection campaign for the iPhone and the Android.The app reminds a person to check their “boobs” weekly, monthly or it can be set to give a person a surprise reminder. It is entitled “Your Man Reminder”. A man of your choice, a boy next door type or business man perhaps, will pop up and remind you to “provide your boobs with some TLC” not tender loving care, but touch, look and check. And for those of you wondering, you can also choose a woman to remind you if a man is not suitable.

This app can also be shared on Facebook. Users can announce to everyone that they have “taken their breasts into their own hands” and reveal to all which sexy man caused them to check their breasts. This is supposed to encourage other woman to check their breasts.  This approach seems to take such a nonchalant attitude about this disease. Where is the message that breast cancer can KILL you?

"Young women are busy and often need a reminder to show their breasts some TLC," said MJ DeCoteau, Executive Director, Rethink Breast Cancer. "Being aware of what your breasts regularly look and feel like is the key to early detection and what better way to remind you to check yourself than a friendly nudge from a hot guy."

Truly amazing, isn’t it?

Then, in our overly sexualized society, there is this one for men.

A Polish marketing agency called Change Integrated created a digital woman that is touched by men through the use of their mouse. At the end, all the touchers get the result of how well they performed the touching which is based on the correct techniques necessary to detect lumps. This interactive video game called “Magic Boobs” had 175,000 participants in one week. The agency targeted men through a porn website.  Each participant didn’t know they were being trained in breast cancer detection until the end of the game.

Facebook is asking women to show their support for breast cancer awareness by “Setting the Tatas Free” on Oct. 13.  How in any way is this helping the cause for early detection at all.  And sad too, because Oct 13 is the one day set aside for metastatic breast cancer awareness. At Stage IV, most people like me wish we could have had our breasts taken from us many years earlier.  Setting them free is just insulting.

Breast cancer is incredibly serious. I hope that the reality of breast cancer is not lost in the excitement of silly phrases and fundraising events. I hope people truly understand how terrifying one cancer cell can be. Cancer is not exciting, no one is left smiling, and no one chuckles when the doctor says you have breast cancer. It KILLS!

I know my grumbling here won’t change anything immediately, but maybe the people that read this blog will begin thinking how insensitive these titles are to the people that think about breast cancer every single minute of their lives. Maybe the discussion will begin. And maybe, people will agree to stop this nonsense because there is nothing funny or cute about any of it.

Tuesday, October 1, 2013

Stage IV cancer now what? What would you do?

STAGE IV CANCER, NOW WHAT?  What would you do?  

Do I cry? Yes!  Do I continue to cry?  Absolutely.  How long do I cry? Almost every day.
I cry because the beautiful sunshiny day that I am feeling today may not be felt by me next fall or next spring.  I even love the hot sunshine of summer.

I cry because I may not get to hold my youngest child or be there when one of my twin daughters wants to call me on the phone because she wants to talk about something that is bothering her.
I cry because I may not be able to finish raising my 10 year old.

I cry because I may not get to see my son stop trying desperately to gain his independence from me because he thinks I try to control every aspect of his life.  I may not get to see him reach the realization that what he interprets as “controlling” is done out of my love for him and my concern for his well-being.
I cry because my son and I were planning to go somewhere in celebration of me making the 10 year mark cancer free after my 2009 recurrence and this will never be.  

I cry because of the medical bills.
I cry because my sweet dog, Tucker, won’t get to follow me to the bathroom to steal one of my socks when I am getting ready to shower.

I cry because I want to plant flowers and may never get to again.
I cry because I won’t get to enjoy my husband’s retirement with him.

I cry for the things I will miss, but…I won’t miss them because I won’t know I am not alive to miss them.
I cry because I feel ugly and sick. 

I cry because life will go on without me, and I don’t want it to.
I cry because I am scared of how I will feel physically in the end.

While I cry, I plan.  I plan the things that I need to get done before I go on this permanent vacation.  I call this “preparing my nest” only it is not for a new baby. 
My Will…done.  My Power Of Attorney…done.  My Health Care Power of Attorney…done.

My plan includes repairing an old quilt, making a new quilt out of old t-shirts from all the theater shows my son has been involved in over the years, organizing each piece of paper I have saved for various reasons, and organizing pictures. I plan to look at everything I have kept over the years and will decide what to do with it.  For whom, have I saved these things for I wonder? No one will care about these things as much as me.  The memories attached to these items are special only to me.  Each memory will die with me.  
My most important task to complete is one that I may not be able to finish.  The process is slow, but I work on it every day.   That is the education of my ten year old daughter.  I am homeschooling her just as I did her three older siblings.  They are all in college.  I am so proud of them.  All summer my daughter and I worked on math, social studies and writing.  Now, along with those subjects, we will dive into 5th grade grammar, punctuation, spelling, science, typing and hopefully music.  I will do this as long as I am able. 

Each day I work on accomplishing something on my list.  But, it is proving to be difficult.  My advice to everyone:  don’t put things off for too long.  It is hard to get the “must do before I die list” done when the rest of life does not stop.  I still have to take care of the daily mundane tasks of laundry, cooking, cleaning, care of my dogs and cats, grocery shopping, taking my daughter to gymnastics, and keeping up with everyone away at school. Those things just never end even when you are at the end of your life.
The t-shirt quilt I started immediately and worked on it four months.  I took it apart several times.  Tediously, I tried to make each block of material as symmetrical as possible.  I worried that someone would look at it when I am gone and see the imperfections.  But it had to be finished.

After the t-shirt quilt was completed, I covered my dining room chairs with the fabric I bought before I knew my diagnosis.  I reread the story I had written about my mother’s and father’s deaths, and read my journals from years ago eliminating those pages that I didn’t want anyone to read.  I took clothes to Goodwill that I will never wear and organized my other clothing so my husband wouldn’t have to.  I cleaned the top of my cabinets in my kitchen where I display favorite glass wear and plates.  I cleaned my front and back porches and repotted several plants.  The porches look the nicest they have looked in years.  Soon I will tackle my attic.
The reason I have kept a journal since I was seven (no, I have not written every day) was so I would not forget the details of things that happened in my life.  The objects I have kept are like my journals.  They spark memories that I have stored in my mind and these things make them resurface.  The mere touching of one of my mother’s books or the scissors she used when she sewed just brings back a flood of memories.  Yes, I cry over these things that I have kept, but often they are memories of how I much I loved that person.  I hope the objects that I have created and am creating will spark happy thoughts about me for my children and my husband.  I hope that I have been important in their lives. 

This morning when I awoke, I began thinking about Tim McGraw’s song Live Like You Were Dying.  (This song has always brought me to tears.) The song describes experiencing the thrills of life. While I see why someone would want to get those adrenaline rushes, my diagnosis gives me the chance to plan, to prepare for my death.  I suppose if I could say one positive thing about my situation, this would be it.  I get to plan.  No, you won’t see me on a bull named Fu Man Chu, or sky diving, or mountain climbing.  Knitting or quilting a blanket and spending time with loved ones is more my style.  Those things would not be great to sing about in a song, though, because it just does not capture the essence of living and how much fun it is.  Imagine these song lyrics…I spent many hours knitting, long hours sitting,... well you get the picture.
Someone might remember my riding a bull, but for me there is more significance in leaving something tangible behind.  My father fenced in our backyard and built a barn for our horse when I was a kid.  He died in 1994 and that fence and barn are still there.  So, a piece of him is still here, and it is not just a memory. That brings to mind another intensely emotional song for me, “The House that Built Me” sung by Miranda Lambert. 

If I could just come in, I swear I'll leave
Won't take nothing but a memory
From the house that built me

Miranda Lambert - The House That Built Me Lyrics | MetroLyrics   
There are those memories again that only I know and will die with me. 

My projects that I finish, my kids and my husband will be able to touch.  They are little pieces of me that I will leave behind.  So my message to anyone is don’t leave things undone cause you might not get the chance to live like you were dying.
Here are the lyrics to the song.  Get the box of tissues!

He said: "I was in my early forties,
"With a lot of life before me,
"An' a moment came that stopped me on a dime.
"I spent most of the next days,
"Looking at the x-rays,
"An' talking 'bout the options an' talkin’ ‘bout sweet time."
I asked him when it sank in,
That this might really be the real end?
How’s it hit you when you get that kind of news?
Man whatcha do?

An' he said: "I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

He said "I was finally the husband,
"That most the time I wasn’t.
"An' I became a friend a friend would like to have.
"And all of a sudden goin' fishin’,
"Wasn’t such an imposition,
"And I went three times that year I lost my Dad.
"Well, I finally read the Good Book,
"And I took a good long hard look,
"At what I'd do if I could do it all again,
"And then:

"I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

Like tomorrow was a gift,
And you got eternity,
To think about what you’d do with it.
An' what did you do with it?
An' what can I do with it?
An' what would I do with it?

"Sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And then I loved deeper and I spoke sweeter,
"And I watched Blue Eagle as it was flyin'."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

"To live like you were dyin'."
"To live like you were dyin'."
"To live like you were dyin'."
"To live like you were dyin'."

Treatments, Tumor Markers, Herbs

Chemo #8 September 30, 2013
While travelling down I-40 to Chapel Hill does give me time to talk with my husband, I am finding I am feeling less than enthusiastic about it.  Yes, I want to “kill the cancer”, but the time away from home is troubling me.  Round trip amounts to 5 hours in the car if traffic is moving smoothly.  And with all the appointments and the waiting I will have to do today, I will be away from home and my daughter for a total of around 14 hours.  I plan to ask, today, about possibly being treated in Wilmington to make my treatment days shorter.

My oncologist has the flu, so I saw the Nurse Practitioner Ms. O. today.  She is wonderful!! 

I was given the flu shot today. 

Ms. O. and I began by talking about the redness of my skin along where the catheter extends from my port and travels to a vein in my heart.  She said it doesn’t appear to be an infection.  I told her about the hug my daughter had given me on Saturday where her shoulder compressed the port and had caused me pain.  The conclusion:  bruising from that hug.  After discussing my two nasty looking fingernails that will eventually fall off, I asked her what the benefit of being treated in Chapel Hill would be compared to Wilmington.  I said, “Surely they have access to the same information and drugs as you do.”

I explained further that my previous oncologist had said he wanted me to get the newest drugs available.  That is why he wanted me to be treated in Chapel Hill.  I had not asked him why Wilmington would not have the newest drugs.  His statement has been in my thoughts since he uttered those words.  Today I asked, “What is the difference in the two treatment centers?”

She gave me her reasoning of why Dr. A sent me to Chapel Hill.  It was quite different from my thinking, “Oh, my oncologist is dumping me” conclusion.  She explained that there were two possibilities:  First, he is a general oncologist and may not have felt he was up-to-date on the newest drugs specifically for my cancer and sending me to an oncologist who specializes in breast cancer would give me the best opportunity to get the best treatment and it would be backed-up with the best and most current knowledge available.  That made perfect sense. “OK”, I thought, Dr. A. may not have dumped me afterall”.  That makes me feel better.  Second, Chapel Hill has more clinical trials available.  This really put a different spin on the Dr. A. fiasco that I felt had occurred in April.  I wish he had given me a more thorough explanation of his motives, and I wish I had asked more questions.  He did not handle as I think he should have my transition to Chapel Hill and the ordering of the Her 2 neu test needed on my cancer to see if the subtype had changed from 2009. Perhaps his nurse was the root of the problem in that mess, or perhaps not.

As we talked, we came up with a possible plan for how and where treatments could occur in the future.  She said if I wanted to be treated in Wilmington, I could and still be a patient of theirs.  I could get chemo in Wilmington between scans.  When a new scan is needed, every 12-15 weeks, I would come to Chapel Hill for the results and discuss continuing treatment or moving on to a new treatment.  Then I could proceed with my treatments in Wilmington until the next scan.  I could also continue to have access to the clinical trials done in Chapel Hill.  If I became involved in one, the treatments would return to Chapel Hill.  This scenario means I could do away with going to Chapel Hill every 3 weeks.  With winter coming, I like that option.  But, I do have to look into where I might be treated in Wilmington because I am not sure I want to go back to Dr. A. 

We left this morning at 6:45 am.  I am hoping to be home before 8:30.  Yes indeed.  A long day it will be. 

Tumor Markers

Because I have been doing some reading about breast cancer and all the details of handling this chronic disease, I was interested to find out why I had never been tested for tumor markers.   She said that some doctors choose not to use them because they can be difficult to interpret.  It is a really a matter of preference by each individual doctor.  There is a doctor in Chapel Hill that she holds in high esteem and he does not use this method to determine cancer activity.  So, she feels comfortable with not testing for tumor markers.  

Furthermore, she explained to me that tumor markers are indicators for the amount of proteins that the cancer puts off in the blood.  Sometimes the test gives a false reading which adds to the difficulty of its use.  Even if tumor markers are high indicating cancer growth, they are not used alone to make assessments about whether treatments should be continued or discontinued.  A CAT scan or a PET scan is still done to see the activity of the cancer.  A tumor marker blood test does not always match these other diagnostic tools.  The mystery of why I have never had my tumor markers checked is now solved.

Because of my fear of the cancer metastasizing to my brain, I asked her how my largest tumor location between my lungs and of it wrapping itself around and infiltrating my artery might affect that outcome.  She said that it is not clear why some people get brain metastasis and others don’t.  While it does happen, the percentage is small.  And, brain metastasis can occur no matter where the cancer is.  A liver metastasis in a patient can have a brain metastasis later even though the position of the tumor is not near the brain. “Ok”, I thought, “I need to work on not worrying about this as much.”

Peoples’ writings on the breast cancer forums that I have been reading, specifically the Her 2 neu breast cancer forums, have left me with an impression that liver metastases seem to have longer survival times.  Sometimes I read of their scans eventually showing no evidence of disease (NOD).   I haven’t read this with lung metastasis.  This conclusion by me prompted me to ask this question: “Do people with stage IV breast cancer live longer with metastasis to the liver?”  Her answer was at least one that left me hopeful.  She is good at doing that for me, creating hope in what feels like such a hopeless situation. 

She said, “I know of a Her 2 neu patient that had a brain metastasis and metastasis to another organ. (I can’t remember exactly which organ right now.  It was not the lung.)  She had surgery to the brain and radiation and today is still being treated.  It has been 8 years.  It is so unpredictable how a cancer is going to respond to treatment.  It is different for everyone.” This doesn’t give me any idea how long I have, but it does give me hope that I could stay alive, with any luck, eight more years.  Someone has done it, maybe I can too. 

Vitamins, Minerals, Herbs
Last question of the day…”Can I take this (I gave her the bottle) multi-vitamin & minerals supplement given to me by a friend who is trying to help me”. 

“All the vitamins and minerals are fine, but some herbs can interfere with the metabolism of the chemo.  The liver metabolizes chemotherapy drugs and the herbs as well.  (That is why liver function is always checked on the day of each infusion.)  Certain herbs could make the chemo more toxic to your body”, she said.  “The liver may not be able to metabolize both at the same time”.  She researched on her computer the affects of Echinacea.  This is not an herb she would recommend I take because it can interfere with chemotherapy drugs.  (It pays to communicate with your health care professional.)   The next herb was dandelion.  No problems with that one.  Then she looked at Ginkgo.  It is another herb with the problem of causing toxicity.  She liked the fact that I had a friend who was trying to help me.  If I was not doing chemo now, I could use her gift of hope.  Thanks, Susan, for trying.

Next CAT scan
My CAT scan will occur before the November 11th appointment.  One more chemo treatment on Oct 21st then I will see if the drugs are working.

I had a Muga Scan today, too.  This scan checks to see if my heart is being affected by the drug Herceptin.  Results were not available at the time of this appointment.  I hope my heart is fine because Herceptin is dripping into my vein right now.

Overall, it was a good appointment.