Breast Investigators

On Good Friday 2008 four years ago, I was at MD Anderson Hospital in Houston, Texas receiving my  pre-operation  instructions for a double mastectomy as the next step in my treatment for Inflammatory Breast Cancer, (IBC).  On Easter weekend we gathered together for the usual traditions of our family, egg hunts, church services and a family meal.  With one odd event tossed into the mix.  One of my daughters rented what she called the ultimate girl power movie and we watched “Kill Bill”, as a silly, stress relieving way of facing what the immediate future held in store.  Easter Monday I was at the hospital bright and early to have surgery.  I think I am the only breast cancer patient I know who practically skipped into the surgical department. I was so happy to be ridding my body of the breast that had gone from a place of loving comfort in my marriage and nursing babies to something that was trying to kill me. 

The forty days of the Lenten season leading up to Easter can be quite a long walk with Christ, reflecting on suffering, coping and healing and I felt like I was prepared for a very life changing and life giving event.

How odd it is to think, four years later, I am in deep reflection once again on a Good Friday. 

After having a really great response to treatment, I have been NED, (No Evidence of Disease) for what in the IBC world is viewed as a long time without disease.  I am not in a panic, but I do think something is wrong. My right eye has been a little wacky, but I wasn’t worried, but looking back it all is adding up. There were little things I overlooked or made excuses for.  Not noticing something out of my right eye, minor balance issues and a ringing sound that no one else heard.   When I saw the doctor yesterday, she asked me about my face. She asked me to close my eyes and was poking on the left side with something sharp, then on the right side something dull. Or so I thought.  When I opened my eyes, she only had one tool in her hand, and it was sharp. The right side of my face is dulled. Tests were ordered.  Lots of tests, because it seems not only is my right eye a little wacky, there is a little wacky patch on my brain scan too. 

Good Friday is one of my most favorite Holy days. I love the Veneration of the Cross, The Stations of the Cross, and music only played at this time of the year.  Today it was difficult to be in church with the focus so tight on personal suffering, of others suffering standing by helpless watching you suffer and then talk of death.

My holy day had an intruder, as cancer has no holiday, so today started with a long medical procedure, a MRI of my spine in a machine so close around me that I am grateful I am not claustrophobic.  The technician asked if I wanted a pill to relax me.  She said 75% of the patients can’t get through this test with something to calm them.  I am grateful I can, at least so far, produce my own calm.   Years of practice of being on my knees, I can take myself to a place of peace and what is happening around me is not so difficult to deal with. 

I have one more test to go, a spinal tap on Easter Monday at noon. If something is going on with my brain, it is not the end of the world. Two years ago, if this was happening to me, I would be so afraid. I have seen great improvement in treatment for the type of cancer I had/have/hope to never have again.  And the last four years, a lot of time on my knees.  

 

Peace be with you,  

Happy Easter,

It was like someone slapped me. A simple post on Facebook, “I’m in a relationship, yes, I am dating again!” I shook my head, as if I could clear the words from my mind, reread the post, and have it make sense. Shaking my head like it was a Magic 8 Ball didn’t change anything. The post read the same, but now it was followed by happy tidings for the future.  

Why was I so upset? Why was this so personal to me? The poster’s wife of many years had passed away due to Inflammatory Breast Cancer three months ago. Too soon to date?  Not too soon to date? Not even casual dating, but a “relationship”. I was not judging, just stunned.  

Just like cancer comes without rules, life post cancer is just as confusing. And everyone has an opinion, a suggestion and a horror story, sometimes all rolled into one. What is a surviving spouse to do? There are no clear cut answers. It is common to hear that the now alone spouse, after a long and happy marriage living “when two become one”, finds this new state of singleness as unnatural as the day is long.  

I am living with a fatal cancer currently at bay. I have told my adult children that if the cancer returns and overcomes, to be supportive of their father if and when he chooses to date. After 32 years of marriage, he is used to living in the community that married life offers. I have explained to my children that he will be ready before they are ready. Even though they would have lost me and would have experienced a deep sense of loss prior to my death, he would have experienced something different, a sort of pre-death loss. When one is ill for a period of time, as rich as that time can be, the marriage does change. Mixed in the blessings are losses that only someone walking that path can relate too.  

I have also told my husband that if and when he wants to date, to wait. Wait a little longer that he might feel ready; to give our children time to be ready too. Their loss, although significant, is different. They are not alone and will not feel the same type of emptiness as he will. Their lives will have different distractions, demands and responsibilities that will naturally remove their focus from loss. But for him, he would be living in that void. So a little time will make it easier for our family to heal. And time to grieve is important. To process loss is important because pain post death seems to come out in layers or more like waves, like your heart can’t give it all out at once and not just be broken forever. Then as he moves forward, although I will always be with him, I can be a memory and not a shadow.  

I tell myself, I am stunned, worried that my friend is moving too fast, and could be hurt. A little more time to process would be good. But if I am honest, I would have to say, I am being forced to mourn myself. As much as I would not wish my husband to be alone, I mourn the losses that we have been forced to live with in my illness. Mourn the loss of us growing old together, after what is now 32 years of married life. Mourn not being with him, for his final days, as the sun sets on a long life.  

What the future holds for us only Heaven knows, so give love today as tomorrows are precious and fleeting.

www.theIBCnetwork.org
 

Everyone! 

We have all seen it, something cute or just silly can go viral on YouTube and the world is talking about it.   Can't we do that for IBC, Inflammatory Breast Cancer?  I think we can.  For a radio program, I  interviewed Dr. Ueno of the Morgan Welch Inflammatory Breast Cancer Clinic in Houston, Texas.  Dr. Ueno liked the interview and on his own put it to a slide show.  

This is an important interview and we need people to hear this. Thank you again Dr. Ueno for your support and generous nature to those fighting IBC.

Let's get IBC to go viral on you-tube! See part 1, 2 and 3 and share, tag, post, twitter, or get on the phone and call those folks who don't have Facebook.

Part One:


Part Two:


Part Three:



Hope always, Terry Arnold

“Just go get some itching cream” stated the nurse as she headed for the door. The patient sits there, stunned, thinking “Now what?”

What you just read is a conversation relayed to me on regular basis by women trying to sound calm after placing a call to The IBC Network Foundation.  Usually they have never heard of Inflammatory Breast Cancer, IBC, until  they find The IBC Network Foundation site in their internet searches on what to do for an “itching” breast. The reactions to the information are as varied as the women who read about IBC which is touted as one of the most fatal forms of breast cancer. Even the most informed women rarely have heard of IBC prior to their first symptoms or their own personal diagnosis. Most have never heard of a breast cancer that does not have a lump, is not commonly picked up on a mammogram, can strike women under 40, and does not have any means for early detection. If this is a woman’s first time to do an internet search while seeking relief from an itching breast, the facts on IBC can be motivating to set an examination as soon as possible. However others are often really confused, conflicted and bewildered as to what should be the next step. They may be the ones who noted some changes in only one breast and got a mammogram followed by limited or unsatisfactory results.  Do they push for more tests? And if so, what tests? Or should they just give their bodies time to resolve the problem? For many years we have talked about the importance of monthly self-exams and mammograms. As important as those good breast health practices are, IBC does not present the same symptoms for detection of traditional breast cancer.

I was inspired to write this today after speaking to a woman in Atlanta, Georgia. She has not been seen by a breast specialist. Her family practice doctor referred her for a mammogram due to her complaint that only one of her breasts was swollen and itching. Normally a size D, one breast was now too large to fit in her bra, and she had a small silvered patch that itched all the time. After the mammogram, the nursed relayed the all clear sign, and she was sending the patient on her way. The doctor never laid eyes on her or her breasts in the flesh, only via a mammogram scan. My caller told me she was sitting there, stunned, and was told, “Just go get some itching cream” as the nurse was heading for the door. The patient stopped her, “What about IBC? What about Inflammatory Breast Cancer?” The nurse looked at her blankly and said, “What is that?”

Please talk to your doctors, nurses, friends and family about IBC. Yes, there are many wonderful medical caregivers who are very informed about this disease; however just as the general population is not well educated on Inflammatory Breast Cancer, many in the medical community are not as well versed as they could be. Together we can change that. We need to talk about IBC.

Inflammatory Breast Cancer Network-
IBC Network Foundation
http://www.theibcnetwork.org 

Update! I am not sure how many listened live, but I was told the show has received over 400 downloads! That is some good education getting out as to IBC. Please share with your friends. This interview is with Terry Arnold, founder of The IBC Network and IBC survivor. We are very grateful for the support of Angie at Moms of Many Hats and her care for IBC education.

Please listen and share, http://momofmanyhatsradio.com/2012/02/19/breast-cancer-is-not-always-a-lump-terry-lynn-arnold-2-17-12/

“You’re upsetting me”, she says and walks away….

Breast cancer, I talk about breast cancer.  Especially in October (or “Pinktober” as it is sometimes called) as it is easier to strike up a conservation with a stranger due to the social focus on this disease.   Today at a volunteer event to protect Galveston Bay, I asked the young woman standing near me if she had ever heard of IBC, Inflammatory Breast Cancer?  She seemed a little confused at not being versed on IBC as she clearly was an educated woman savvy in women’s health issues.  After a short delay, she said no, she had not heard of this type of breast cancer.  I began to tell her about IBC, the cancer that is viewed as a rare but most fatal breast cancer often striking women prior to mammogram suggested age screenings.  Her face tightened; unwittingly I had hit a nerve, as she told me there was a lot of breast cancer in her family.  Within seconds calm washed over her face and she smiled and said, “But I will never get breast cancer!”   Then I was the one at loss for words, “Why do you say that?”  Her reply, “I have nursed two children, each child over a year, so my breasts are resistance to cancer.”   I sputtered for a minute…and I said, “I hate to tell you this, but I am a mom of five children, and nursed all of them at least to their first birthday, and I talk to women about IBC because I was diagnosed with this cancer the summer of 2007”.

Inflammatory Breast cancer is the most fatal of the known breast cancers and tends to hit women in younger years often prior to mammogram suggested age screening recommendations. Proper and aggressive treatment with IBC is very important and person's presenting with IBC symptoms need to seek a diagnosis as soon as possible.

My heart was heavy after speaking to this beautiful young woman, because I think of myself as someone who encourages, gives hope and fights for education of a most aggressive cancer, which is dubbed “The Silent Killer”.   As I watched her walk away, I felt like I had taken something from her, a confidence that nursing was a given protector and that she could not get breast cancer, instead of my intention of giving her information that might be of benefit to her or others.  All women need to be well educated on IBC, especially nursing mothers.  IBC is often misdiagnosed as a nursing mom infection; the woman is given antibiotics and sent on her way.  Time might heal all wounds, but with IBC time works against you and a proper and accurate diagnosis is very important.  IBC is not detectable prior to a stage three, it does not present with a lump, is typically not found on a mammogram and the symptoms don’t fit what we tend to view as possible cancer threat.

Quick check list of symptoms of IBC

 

Inflammatory breast cancer symptoms may include:

 

•  Breast swelling, which one breast is suddenly larger than the other
•  Breast that feels warm to touch and may look infected
•  Itching or shooting pain
•  A dimpling of the breast skin that looks like an orange peel (peau d’orange)
• Thickening of the skin       
• Flattened or discolored nipple
• Swelling in underarm or only on one side of neck 
• Might feel lump, however lumps are not common in IBC.

 

It stands to reason that nursing would aid in the good health of that child, as well as the mother.  However it is not a magical cloak of protection from a disease that is viewed as seriously as IBC.  So please from one nursing mom to another, practice good breast health, read about IBC, and talk to your friends, midwives, and daughters.  This conversation might be uncomfortable as it might go against what you believe to be true as to the benefits nursing gives you as a woman, but we need to be willing to be uncomfortable sometimes, as knowledge is power.  We need to be educated on IBC.

 

A resource www.theibcnetwork.org

Post questions to leading specialist about IBC, http://tinyurl.com/44n7xnq

Friendswood event for IBC http://www.theibcnetwork.org/Hunt_for_Hope.html