It’s Not All About The Pink Bras…Meet Claudia

Meet Claudia

I met Claudia through this blog. I want to thank her for allowing me to share this letter that she wrote to her gynecologist after her doctor missed obvious signs of breast cancer. Claudia is incredibly strong and brave for sharing these pictures of herself in the hope of saving another woman from going through a similar experience. Thank you Claudia for your friendship and for your generosity.

Dear Doctor,

It has been one year since I was diagnosed with Stage 3A breast cancer. I had a tumor measuring 9 centimeters. Ductal and lobular carcinoma, invasive, advanced disease, as you must surely know as a physician. Since then, I have endured a very sad and hard path in my life.

I lost my breasts, lost both of my nipples, lost my hair, and I can’t have estrogen circulating in my body.  As a gynecologist, you know what that does to me physically, and emotionally.

What does breast cancer treatments look like

Claudia sent this picture of herself with this letter to her gynecologist. Her doctor never responded.

I’m not sure if you forgot about it or not but I wanted to remind you of our last conversation.

You were my first line of defense against breast cancer. Here are the facts: one out of eight women will get some kind of breast cancer. Women who have fibrocystic or dense breast tissue have a higher chance of being diagnosed with it. Also, lobular cancer is very hard to detect. Knowing these three things should have made you think twice after reading my last mammogram report and after you personally examined me with your experienced hands.

I had a fat pocket that grew under my armpit and the only reason it grew there was because the tumor had pushed it out. I found out too late because you did nothing about it when I brought it to your attention.

My left nipple was leaking and turning inward, your words were, “It must be because you jog, because of the rubbing on your nipples, your brain thinks you are lactating.”

Burns from radiation treatment

Burns from Radiation Treatment

Well, my nipple was leaking because I had breast cancer. My nipple turned inward because I had breast cancer and that mass under my armpit was due to breast cancer.

You have two girls. Can you imagine if this happened to one of them or to you for that matter? Can you imagine losing your hair, losing your breasts?  How about watching your mom, dad, husband, young kids, and friends see you go through this suffering and not able to do anything about it?

Tamoxifen may save my life but let me tell you something, it numbs me. The side effects take away my quality of life.

I am grieving right now. I don’t know if I will live for two or twenty years. How do you think I feel having to do tests every three months, PET scans every six months and then every day of my life hanging onto the thought that at any time cancer could come back?

Although this is not a blame game, many times my thoughts go to you. I do blame you for your lack of care and attention. Be happy that I am not reaching you through lawyers.

After the mastectomy before reconstruction.

After the mastectomy, before reconstruction.

Pay more attention to your patients, teach them what to look for, educate them on breast cancer, or any other cancer related to your specialty. You made an oath as a doctor, have you forgotten what that really means?

Maybe I couldn’t have avoided the cancer. But you could have helped me avoid it being detected at stage 3.

Claudia Degomme, your ex-patient.

Degomme Family

The Degomme Family

Note: Claudia was smart, she followed her intuition and sought a second opinion when her doctor told her that her symptoms were nothing to worry about. Her best friend who is also a doctor provided the answers she needed to save her life. Here in Claudia’s words are what happened next.

Anaisys came with her family to dinner on a Saturday. Something was telling me that there was something wrong with my left breast because my nipple started to leak a little and it was going inward, even though the mammogram had come back CLEAR. 
I asked Anaisys to take a look and she noticed a dimpling in my breast’s skin and she said that was typical of a tumor. She did not say much more, I guess not to scare me, but she told me afterwards that she feared I had a tumor. So she herself made the call to the breast surgeon and made an appointment for me. Monday I was at the doctor’s office at 9 a.m. with my husband, not knowing that soon I was going to go through the hardest, saddest, craziest ride of my life. 
 Claudia and Anaisys

Claudia and her supportive, loving husband Yvan.

Claudia and her supportive, loving husband Yvan.

Responding When Your Relative is Diagnosed with Cancer

Responding When Your Relative is Diagnosed with Cancer_0325_KF_MW (1).docx A special thank you to Kaitlyn Teabo of the Mesothelioma Center for writing this guest blog for my site.

When a family member is diagnosed with cancer, it can be hard to initially handle. It is common and natural for you both to feel overwhelmed, scared, angry, sad and other emotions all at once. This compilation of emotions can make knowing exactly how to react to the diagnosis that much harder.

If you want to help, but you’re not sure how, here are some ways you can make the process easier for your relative and yourself: 

  • Listen. People process issues like a cancer diagnosis by talking about it. Show that you are listening by occasionally paraphrasing what your relative said and asking if that is what they meant. Unless asked, in the early stages of the diagnosis don’t offer advice. Your ears are worth more than anything at this point of the journey. The doctor will help your loved one and yourself through the process, discuss their prognosis, and help find the best treatment centers in your area.
  • Tell Your Relative You Love Them. Even if you think it is implied, hearing that someone loves them can help with feelings of depression and isolation, which are common after a diagnosis. Show affection when you can, this effort can have a huge impact on the coping process.
  • Don’t Compare. Sometimes when someone is going through a similar experience as you or someone you know, it may be easy to bring those experiences into conversation. But not all cancer experiences are the same, which is why you shouldn’t compare your friend’s mom’s cancer to your relative’s cancer.
  • Help Without Being Asked. Some cancer patients don’t like to admit they need help and will neglect to ask when it is necessary. Little gestures can often make the biggest difference. Make your relative’s favorite meal or dessert and stick it in their fridge. Help with the laundry and housework. Drive them to appointments or do daily errands.
  • Provide Comic Relief When Necessary. Yes, this can be a trying time for your relative and other members of the family and close friends, but it is also important to remember to laugh. Be careful not to offend your loved one, and only provide humor when it is appropriate. Remember to stay sensitive when they are grieving and offer a chance to laugh when they could use the reminder. Humor can be a great form of medication and may offer a way of healing.

As each diagnosis and each person affected by cancer is different, the ways to help your relative overcome the disease may also differ. These tips serve as a helpful guide, but you are ultimately the best judge on how to respond and act around your loved one. The most important thing is to just be there for them while providing support.

Author bio: Kaitlyn Teabo is a writer for The Mesothelioma Center. She combines her interests in writing, cancer research and emerging scientific technology to educate the mesothelioma community about asbestos and its related diseases.

New Day, New Doctor, New Hope

Switching doctors
You have heard the saying “It takes a village.” This holds true for cancer patients; it takes a huge team of doctors to treat a person with cancer. It is an often confusing process for the patient; one doctor prescribes a medication and then sends you to a different physician for a drug to counteract the side-effects of the first one. One doctor has an opinion and the next has a different view point. Medicine is not as black and white as one would think, there are too many variables. I consider myself a very informed patient; 20+ years in the pharmaceutical industry taught me how to research, read, and understand studies. I have also had a lot of training on effective communication with physicians. These skills come in handy as a patient.

From the beginning I wasn’t connecting with the oncologist that I was originally referred to following my first diagnosis of breast cancer. She was defensive and condescending during our interactions. Was it because I came to all of our appointments with my black leather notebook filled with my own research and lots of questions for her? Or was it that she had other things on her mind, like her own fiscal health? Either way, I stayed five years and three diagnoses too long.

Have you ever thought to yourself I don’t think this is the right doctor for me? If you have, you were probably right. There is a large continuum of skill and competency in any industry, even those that practice medicine. What? That’s right, I said it, there are some terrible doctors practicing medicine. I saw this first hand over the two decades that I was in “the business”; most doctors were good, some were mediocre, and a few were down right bad.

I should have followed my gut; I should have switched oncologists a long time ago. Why didn’t I? For the same reasons as most; we are indoctrinated to believe that doctors are the all-knowing, ultra-educated, experts on health and medicine. That’s all fine and dandy, after all, they do possess a lot of education and training, but that doesn’t guarantee that they will be good doctors or click with every one of their patients.

Just in case you have never received permission to challenge your doctors or seek a new one if the one you are seeing isn’t working for you, let me be the first to offer you that permission. If it doesn’t sound right, feel right, or the person makes you feel uncomfortable in anyway, request your records and get the hell out. Find a doctor that works for you, not just for their own bottom line. Medicine is commerce and one should have their eyes wide open on this knowledge, and never forget the patient is the customer. I have seen the same scenario play out over and over again in doctor’s offices; the doctor is kind, calm, and happy, so is their staff. Then they move into a new building, take on a huge mortgage and they become anxious, rushed, and snarky, and so does their staff. Doctor’s in private practice work hard to cover their overhead and Medicare and the insurance companies pay less and less each year for services rendered. Couple that with a patient who has a disease and wants compassion, time with their doctor, answers to their questions, a plan to get healthy or stave off disease, and it can be like water and oil.

So what do you do? You get personal references from friends, family, acquaintances, or on-line (healthgrades.com is an on-line service where you can gain valuable information and reviews on doctors). Listen to your gut, and make a move if necessary. People stay longer than they want to with their hair dressers and their doctors because they don’t want to make anyone feel uneasy. When I lost my hair from chemotherapy; I thought to myself that was the perfect time for me to switch hair stylists. I loved the stylist that I had been going to forever, but I thought he was charging me way too much and sometimes he seemed distracted and I left his chair with a bad pixie cut, however, it took me being bald to make a change.

So on my last uncomfortable visit to my oncologist, I said enough is enough. I requested my records and got the hell out. I asked my breast friends who they saw and a particular doctor’s name kept coming up. With a little help from a dear friend who happens to be a physician, I was able to get an immediate appointment with this oncologist that I was courting. Right off the bat I liked him. He said the one thing I had been longing to hear, “It’s hard to believe this right now Trina, because you have been in the thick of this disease for so long, but soon you will have all of this behind you, you will be cured, reconstructed and you will go on to live a long and healthy life just like the rest of us.” Hope. He gave me hope. Hope that I would be whole and healthy. Hope that I didn’t have to feel uncomfortable with any part of my health care village.Hope that I had found the right doctor for me. This hope was worth any uneasy feelings that came with a break-up.
New HopeNew Doctor

A Botched Boob-Job

 

If you Google botched boob jobs, the pictures you see here will come up; grotesquely undesirable breasts complete with commentary. I had a botched boob job, but mine was far different than those of these women.

During a unilateral mastectomy (one boob) a couple of years ago, I had immediate reconstructive surgery. The breast health surgeon was there as well as the plastic surgeon. One giveth, one taketh away. It has been complicated because I had already had one course of radiation on that breast and radiation degrades the tissues and its ability to maintain a foreign object. It all went well and after multiple surgeries, I had two perfectly natural looking augmented breasts. I was impressed.

Then the cancer came back for a third time. The doctors told me I would have to have the implant taken out and a tissue expander put back in for the better part of a year while I underwent chemo and another course of radiation. I was devastated at this news. The tissue expander is by far one of the most painful aspects of this whole journey. I know I have complained about it before, but I just can’t complain enough about this torturous device. There has got to be a better way to “hold the space” for an implant without putting a hard squeaky toy in a woman’s chest wall. I spoke endlessly with my surgeons about this, even negotiated a way to live with the tissue expander for a shorter amount of time than what they originally wanted. However, I may need to become an advocate for a new type of technology, or hire a team of engineers to come up with something different on my own, because what is available is ridiculously painful.

I got through the nine months or so with the tissue expander and now it was time to remove it and replace it with a nice soft pliable silicone implant. I was never happier to undergo a surgery. But after surgery, things started to go downhill. My body was not healing. The radiation oncologist warned me that all of the radiation that I have had could cause the body to reject an implant all together. The tissue is no longer healthy, which is what they wanted in order to keep the cancer from returning. But without healthy tissue, there is no healing.

4 weeks post-surgery the incision opened up and a flood of fluid pooled around me. I was completely freaked out as I could tell that my body was “rejecting” the implant. The radiation oncologist suggested that I just remove the implant altogether and have only one breast…I looked him square in the eyes and asked him how many body parts he was living without because of cancer. He looked away. I called the plastic surgeon. 

“We need to get you in tomorrow for emergency surgery” said the surgeon. “I want to swap out the implant which has probably become infected, move the incision in order to find healthy skin that will heal and put a drain in so there is no pressure on the incision as this will take a long time to heal.”

“Fine,” I said. “We need to save her; I’m not ready for a uniboob.”

So back to surgery I went, I think this was the 15th on this same little breast, but I wasn’t giving up.

Since I was their last case of the day, I couldn’t eat or drink anything and I had to wait around all day while they squeezed me in for this emergency procedure. It was starting to get dark outside and the staff was starting to leave the surgery center for the day. Finally it was my turn. They wheeled me into the OR and I looked at the clock, it was 4:30 pm. The anesthesiologist came in and mixed up a nice cocktail for me that he put into the IV. He asked me a question, but I don’t remember answering it, man I love that stuff!

A couple of hours later I was in recovery and Joe was back by my side. We drove home and I settled in to begin the long road to healing. It has been 10 days since the surgery, I still have the drain, but the surgeon is seeing good signs of healing. I told the universe that I am coming out of this thing with two breasts and no cancer. I will settle for nothing less and I won’t give up on being healthy and whole.

But the question that still lingers on my lips is why oh why do woman have grotesquely weird augmentations done to themselves? 

Radiation Therapy and a Dog Named Dash

Dash and I out for a walk

On the first day of radiation, the friendly medical assistant showed me into the dressing room, handed me a patient gown and a key to a locker dangling from a twisted piece of plastic in the shape of a bracelet. She showed me to a cupboard where there was a drawer labeled with my name on it. Seeing my name there in print amongst the names of the other patients made my heart sink. I wondered who these people were and what kind of cancer they had.

“Each day when you are done with your treatment, you can store your gown here to use again,” said the medical assistant. Then she escorted me to a chair to wait my turn for the blast of radiation coming from the huge machine inside the sterile room that the technicians fled from before hitting the kill button. There is no comfort in seeing the person who is administering your treatment for cancer protecting themselves from the same toxins. It makes you pause in wonderment and fear and made me want to flee with her.

The patient before me left the room and now it was my turn. My eyes darted from side to side and I broke out into a sweat as I was positioned on the table. While holding my arms overhead and tilting my chin away from my chest as I was instructed to do so, tears ran down my cheeks. I felt sad, scared and physically exposed with my breast out in the open. The machine began moving around me and made a low humming noise. A red light glowed in the corner of the room, sort of like a traffic light, warning the staff not to come in. A few moments later the machine stopped back in its original position. The technician came in and told me I could release my arms. “All done Trina,” she said. “See you tomorrow.”

This routine went on every day, and I continued to work around my treatment appointments. A few weeks into radiation, I became very fatigued. I had trouble doing the smallest of tasks and spent most of the evenings in bed after work. I would get up only long enough to try to gather up some dinner for my son. I decided I needed to take a short-term leave of absence from work so I could rest in between treatments. I just couldn’t do it all and I had a hard time admitting that to myself.

The weeks that followed were filled with daily trips to and from the clinic and lonely hours in bed. I decided I needed a full-time companion to keep me company and a dog was just the ticket. I was thumbing through a magazine when I saw an advertisement that featured a Dachshund. I fell in love with the adorable little creature in the pictures and tore out the page to show my son Curtis. “This is the kind of dog I want,” I told him. He just shook his head. If it wasn’t a big dog like the Golden Retriever his dad has, he couldn’t see the point.

On Saturday Curtis and his friend wanted to hang out at the pier in Pismo Beach and asked if I could drive them there. I thought it would be a good opportunity to walk the beach and clear my head while they hung out so I agreed. As I was coming up the beach Curtis was yelling to me from the top of the pier. “I found our dog Mom, come quick,” he shouted. He excitedly lead me to the local pet store just off the main drag, all the way I protested that there was no way I was buying a dog today. Behind the glass barrier was a red miniature Wiener dog with the most precious face I had ever seen. The clerk brought the puppy out and handed her to me. She immediately wrapped her head and neck around mine and snuggled up to my chest. She clung there in desperation as if she was willing me to take her home. I was instantly hooked. There was no way I was leaving this store without her. I bought all the puppy supplies that the clerk recommended and a $1000 later, I walked out with the newest member of our family. I named her Dash. I thought it was a fun play on words for the breed and her long body reminded me of a dash mark. That first night at home I placed Dash on the floor at the foot of my bed in the kennel that the clerk said I would need in order to train her. She whined a little and seemed scared and restless. I kept popping up from my pillow to look at her every time she moved in the night. Neither of us got a good night sleep. The next night I decided she would sleep on the bed with me. She was so small and timid and I wanted to protect her from falling off of the bed so I built a wall of pillows around her to encapsulate her. She still wasn’t settled with this arrangement. On the third night Joe was there with us. She curled up onto Joe’s chest and rested her head into his neck. She stayed like that all night and it was love at first sight for those two. From then on Dash would snuggle with us throughout the night. She burrows under the covers to keep warm, and her body next to mine is like a hot water bottle. Her calm loving spirit coupled with her timid personality made her the perfect companion for me while I was resting in bed. During the day we would take long walks together and then rush back to the comfort of our bed exhausted from the outing. This sweet little creature became one of the greatest loves of my life, and my emotional savior.

Of Course They’re Fake, The Real Ones Tried To Kill Me

October 2011

Breasts, tits, hooters, ta-tas, knockers, melons, jugs, boobs, bosoms, headlights, chest puppies, cans, the girls, rack, bazookas, or whatever you call them, they are a powerful part of the female body. Our breasts can attract mates, nourish babies, provide self-esteem, contribute to a woman’s sexual well-being and be the constant subject of male fascination everywhere. But for some of us, they are trying to kill us.

After my second diagnosis with breast cancer, my doctors informed me that I would need a mastectomy. It is my right breast that is diseased; the left breast has never shown signs of cancer. They gave me the option to remove both breasts or just the diseased breast. I chose to remove only the right breast and to preserve my healthy left breast. Why? Because there was no sign of disease in my left breast and I tested negative for the gene that pre-disposes one to breast cancer.

Besides, the surgeons warned me that having a mastectomy isn’t the insurance policy that we all hope it is.

The surgeons cannot guarantee that they can remove 100% of the breast tissue, so with even one breast cell left behind post-mastectomy, cancer can grow, which is exactly what happened to me.

I underwent the mastectomy and reconstruction, a process that was extremely complicated and painful since I had already received radiation on that right breast. Radiation degrades the tissues and makes reconstruction more complex. My plastic surgeon had to swing my latissimus muscle from my back to my chest wall in order to support an implant; he also had to harvest tissue from my back to reconstruct a nipple. He then tattooed the reconstructed nipple to match my natural nipple. He did an amazing job and I sit an awe of the results of a good plastic surgeon. When I showed a girlfriend the results of my surgeries, she asked which one was fake? That is how good reconstruction can be.

Perugia Italy January 2012

A year later the cancer returned for a third time in the same right breast. The cancer came back in a more aggressive form, an invasive form. Two rapidly growing tumors each a different type of cancer.  I would require immediate surgery, chemotherapy, 35 radiation treatments, and even more reconstructive surgeries. I was devastated as my breast continued to try to kill me even though it was gone.

All of this Breast Cancer Awareness Doesn’t Pertain To Me.

Curtis, myself and my mother, Rita at the American Cancer Society Making Strides Against Breast Cancer Walk Oct. 2011.

Continued from Part 1; How much Harm Can a Few Teeny Tiny Little Dots Cause?

When I came to I was crying and having a full-blown panic attack. My fingers curled into claw shapes as the blood left my hands to protect my vital organs. I was hyperventilating and couldn’t catch my breath and I was also aware that the gown was no longer providing me with any real modesty. On the other side of the door Joe was waiting in a chair typically reserved for the next patient. He was helpless as he heard what was going on inside the room. The two technicians knelt down to comfort me and wipe my tears away, while the ill-bed-side mannered doctor suggested they bring in a tall stool for me to sit on and put on the air conditioner so he could try again. I took some deep breaths and gathered myself up and sat on the stool. The technicians were able to quickly position my breast this time but when the doctor inserted the needle for the second time I began to lose consciousness all over again.

“You will require a surgical biopsy” the doctor said and left the small room.

I apologized to the technicians and stumbled into the comforting arms of Joe.
A few days later I received a call from the office of a female surgeon in my area that specializes in breast health. They scheduled an appointment for me to come in and consult with her about a surgical biopsy. I immediately felt relief that the surgeon was a woman and that she specialized in breast “health” – code for cancer to make the patients feel better, but I liked the word health non the less. Her office was decorated in everything imaginable made with a pink breast cancer awareness ribbon. There were dolls, plaques, pictures, framed prayers, bumper stickers, magnets, vases, pens…a sea of pink, and a sea of ribbons. At least all this awareness doesn’t pertain to me I thought, I merely have a few precancerous cells that need extracting. The surgeon was just a few years older than me and told me about her daughter as I told her about my son. We compared parenting stories and she made me feel at ease. She explained to me in detail what, when, why and how the surgical biopsy would go and we agreed on a date before I left. “Easy breezy Chucky cheesy.” I thought.

Supported by my dear friends, Jen Luce and Deana Seawall at the ACS walk.

My mom and Gene came down from Sacramento for the biopsy and of course Joe was there. On a Friday morning I was admitted to the same day surgical unit at Marian Hospital. The anesthesiologist assigned to my case was a friend of mine from my neighborhood who I had played on a softball team with. I settled into my hospital gown and sedative and even cracked a few jokes. This was a hundred times better than that attempted needle biopsy. The attendant wheeled me in to the operating room and as I drifted off to sleep I imagined that all of those tiny dots would be out my breast soon and life would be back to normal. Over the weekend my family kept me busy by playing scrabble and comfortable by draping blankets over me as I sat on the couch to watch TV with them. We would have to wait until Monday or Tuesday for the pathology report. Monday came and went without news and you could feel the tension in my house rise while we waited. It only took a couple of days to heal from the biopsy and I was at work on Tuesday driving between sales calls when the call came in from my surgeon.

“I’m sorry to tell you that the cells that I removed show evidence of cancer” she began.

“The good news is that we caught this very early in the disease process and it is highly curable. It is called DCIS – ductal carcinoma in situ. Ductal meaning the milk ducts, carcinoma meaning cancer, and in situ is latin for contained within the site. Treatment generally consists of a lumpectomy to remove any tissue necessary to gain a clear margin and then a course of radiation to prevent it from recurring. I would also like to do a genetic test on you to see if you carry the gene that predisposes you to breast and ovarian cancer since you are so young”. Breathe I kept telling myself, just breathe, slow deep breaths, in and out. I was driving so I had to pull over in fear that I would have another panic attack and crash. “Do you have any questions?” she wanted to know. Questions? Do I have any questions?

My friends and family who walked with me in the ACS Making Strides Against Breast Cancer Walk.

 

Walking the Talk

 

My wonderful friends and family walking for Trina’s TaTas

 

My mother and myself holding our team banner.