The One Breasted Warrior

One breasted warriorI’m still fighting. It hurts physically and emotionally. I am not getting any closer to complete healing or a body that has all of it’s parts in place. I remain hopeful though, hopeful that the cancer does not return. My foolish, vain self marched into the plastic surgeon’s office recently and  boldly stated that I would like to discuss my options for making another run at reconstruction. I haven’t  stopped worrying or crying since that bold move.

“We need to find the root cause of the chronic pain in your chest.” stated the surgeon. “It is most likely necrosis of the bone from radiation. I can order an MRI and we can see what is going on in there. If it’s nothing than we can start with a scar revision, then blah, blah, blah…” He continued.

MRI? That picks up cancer too I thought. Is he looking for cancer? Why do these doctors want to continuously look for cancer in my body?

I had two MRI’s done the following week on two separate days, double the stress. One was to check the left breast that still remains with it’s small but perfectly proportioned implant. The other MRI was to look at my right chest and ribs where nothing remains but skin tact down onto my bones and pain that never stops. Wearing a bra and a prosthesis is an act of a warrior. It is like my shield as I go out into the world trying to fit in with the normal breasted women. It is incredibly painful to wear this shield as it hits right where all of the pain is concentrated. I  dig for a warriors courage just to get dressed for work in the morning. By the end of the day that bra must come off immediately and I greet my son and his friends with one breast. Most are too polite to stare, but they all hug me sideways, as if they are afraid to hurt me or confirm what they see through touch.

The MRI’s came back inconclusive. “There is something on your ribs but we are not sure if it is injury or metastatic bone cancer.” Said the surgeon. “I am going to have the Tumor Board review your case and make a recommendation. Don’t worry, it’s probably nothing.”

How many times have I heard that? “Don’t worry, it’s probably nothing.” News flash to my team of doctors, it has always been something when you go poking around looking for cancer in me. I cringe when I hear those words.

The “Board” recommended a PET scan. Where in the fuck is my warrior Xanax?!

The last time I had a PET scan was right before I started chemo therapy a couple of years ago. This time, I merely went to the plastic surgeon and inquired about reconstruction and now I am having a contrast dye put into an IV that is hanging out of my arm. The tears rolled freely down my face as I was positioned into the machine. “Are you okay?” Asked the tall, dark, handsome technician as he handed me a tissue and waited patiently for me to stop crying so he could start the test. I dug deep for my warrior strength and fell still and quiet while the machine hummed around me searching for cells that are ruining my life and trying to kill me.

The results were sent to the Tumor Board and they recommended a biopsy of my ribs.

I called my oncologist and pretty much said what the fuck?! “I don’t think there is anything to be worried about,” he said. I couldn’t breath. I walked outside of the hospital where I was at work to continue the conversation but my legs were starting to go numb from panic.

“Let me have another radiologist take a look at the films.” He offered. “I will be in touch, don’t worry Trina.”

One breasted warrior 1

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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.

1+1=2 Boobs

Breast Reconstruction T-Shirt

I needed to buy a breast, but I haven’t worn a bra in 6 months. I hate wearing a bra in general, they bind my ribs and pinch my still healing tissue. Getting dressed with just one boob is no easy task either. I searched my drawers for a do it yourself solution. I found some removable cups in my bikinis and placed them in my bra-shelf camisole. That didn’t work out too well because they would come loose and end up in the center of my chest or in my armpit. Plus they did not mimic my other breast in size or shape. It was time to get a breast prosthesis. I plan to attempt reconstructive surgery again, but in the meantime, I need some options.

The Certified Mastectomy Fitter was very kind and knowledgeable, and she took her time helping me to find just the right form and bras that I could wear comfortably. It took two visits totaling four hours to get it just right. I had no idea how comprehensive the fitting would be. We were in an exam room, and she had cupboards full of special bras with pockets in them to hold the forms. Once I found a style that was tolerable to me, she fit  the right cup with different size and shaped forms. Some were foam, some were made of soft fabric stuffed with little beads that conform to your body, most were silicone with a nipple built right onto it. When I gravitated towards the weightless foam numbers, she cautioned me that it is important to have some weight in your prosthesis. She explained that the body’s bio-mechanics get all out of whack when you have weight on one side but not on the other. Women, especially large breasted women develop neck and back pains from not having the weight evenly distributed. Makes sense, huh?

Certified Mastectomy Fitter

She pulled out dozens and dozens of these forms and shoved them into the bra one at a time while tugging this way and that way trying to line up my natural nipple with the prosthetic one. I winced in pain every time she came at me with one of this forms; I wasn’t prepared for her hands to be inside my bra the whole time. I left sore and exhausted after the first visit. On the second appointment, I pre-medicated with a pain pill. She had no problem digging around the interior of my bra.  Adjusting both sides this way and that, adjusting and measuring for the perfect alignment, size and shape.

External breast prosthesis after proper fitting

When we got the fit just right, I put my shirt back on to see how it looked under clothes. I was very impressed! She got it just right. I could not see a difference between the implant on the left and the prosthesis on the right, it looked great! I stood a little taller as she was surveying her work; I could feel my confidence rise. This was going to be manageable; I could bridge the gap between reconstruction attempts with this set up. I could also wear more of my clothing, I would no longer be limited to what I could wear with the camisoles and the homemade form that goes awry. She got a kick out of my attempt to make something at home to fill the space until I was healed enough to be fitted. She let me know that my insurance would cover 2 forms and 4 bras so I was able to get the foam one to exercise in and the silicone one for the needed balance of my bio-mechanics.

I was not prepared for my body to reject the implant, twice. This wasn’t supposed to be part of the equation, well, neither was the 2nd or 3rd recurrence of breast cancer for that matter. I have learned a lot about human suffering and about the one thing that I can control when the inevitable suffering comes my way… and that is how I respond to it. We are not meant to be perfect, we are meant to be whole beings; the good, the bad, the beautiful, the ugly, and then most importantly, our response to it all.

For more on this topic, check out part one of this tale: Prosthetic Breast, Seriously?! http://www.trinaschilling.wordpress.com/2013/03/11/prosthetic-breast-seriously/

Prosthetic Breast, Seriously?!

prosthetic breast 1

Part one of my sagas.

The word prosthetic to me sounds old, broken, missing, braced, fake or injured. It gets stuck on my tongue and I don’t like it. I don’t like the way the word sounds, and I don’t like saying it. What is it supposed to mean anyway, a good aesthetic? Does that mean without a prosthesis, I don’t look good, that I am unpleasing to the eye? Crap that is a lot to digest since I have endured 16+ surgeries trying to look “normal.” Still after all of those surgeries, my body rejected the implant, twice.
prosthetic breast

I don’t want a prosthetic breast, although my mom points out that an implant is a prosthesis. Technically she is correct, but for this article I am referring to an external device. I don’t want one because I don’t intend to remain in my current physically unpleasing to the eye state of being. I plan to be fully reconstructed and I have a wonderful and talented plastic surgeon who agrees with that plan. However, in the short-term, until my body can fully heal from the complications of so many surgeries and radiation treatments, I have a missing accessory. One would not be able to stop themselves from staring at my single perfectly augmented breast compared to the empty, hollowness on my right side. I have come up with a temporary solution; gauze (still healing) and cup type inserts that are removable from my bikinis. These breast shaped pads work great, but they sometimes become dislodged from the shelf-bra camisoles that I wear; I’m still too sore for a regular bra. When they become lose they land somewhere in my armpit or in the center of my chest, which is definitely not pro-aesthetic!

After I finished breast-feeding Curtis, my B cup breasts shrank to AA (which really means negative A in the bra sizing world. Why does a DD mean larger than D, but AA mean smaller than A?). I was spending a lot of time on our boat and in bathing suits, and I didn’t want to go out and buy all new smaller cupped bikinis, so I purchased the chicken cutlet looking breast inserts that some women wear to enhance their cup size. They are made of a silicone type gel and they are pretty heavy in weight. They worked fine to fill up my bathing suit tops, until the day I left them in while water skiing. I took a nasty spill that day, and those cutlets flew out of my top and were floating on top of the lake. My friends in the boat had a good hysterical fit of laughter as they were pointing to the fake boobies bobbing up and down in the water while I tried to swim after them to retrieve them. I laughed too, I don’t know why I thought those things would stay in place, and I was slightly embarrassed that my secrets were out and floating on top of the wake for all to see. I hated wearing the cutlets, they were hot and sweaty and obviously prone to fall out because of my active lifestyle. I immediately went out and bought all new bathing suits and sold the cutlets at a garage sale, those suckers were expensive, so I knew someone would buy them. I learned to embrace my small breasts, dress accordingly, and never ever considered augmentation until I was faced with reconstruction post-mastectomy. I quickly warmed up to the idea of insurance paid implants; I think they are the silver lining common denominator for breast cancer survivors or those having a prophylactic mastectomy.

So now I am planning an annual family trip to Puerto Vallarta, and I am wondering how I am going to navigate resort wear with only one breast. I decided it was time to go for a prosthetic fitting. Fitting, the word should be used to describe Kim Kardashian with a flock of stylists pinning her outfits on her in a way that shows off her spectacular curves. That’s the kind of fitting I want, not one for a fake external boob.

prosthetic breast 6

When I lost my hair from chemo, I would only wear wigs if I were going out in public. I wore them mainly to make other people feel comfortable around me. I didn’t want my cancer to be the center of attention and by wearing a wig I could blend in. People around me were more comfortable without ever even knowing that I was making them feel more comfortable. I on the other hand was not physically comfortable; wigs are hot, sweaty, and itchy, just like the cutlets. So mainly I would wear a baseball cap or a beanie type hat more often than wearing wigs for jaunts to the doctors for treatments or to the store or gym. I was able to continue to work out at the gym during my off weeks of chemo and would just throw on a baseball cap. I drew a lot of stares, but eventually people got used to seeing me at the gym with my bald head under a baseball cap, or I simply got used to the stares. However, I’m not prepared for people staring at my chest and trying to put together the pieces of my life in their minds, especially in a bathing suit.
prosthetic breast 4

I called the local cancer resource center and asked them if there was a place in town that sold breast prosthesis. The center gave me three names: a prosthetic business, a pharmacy, and a lingerie store. I called the prosthetic company versus the lingerie store, I already knew what the lingerie store sold; cutlets. I couldn’t imagine that a pharmacy would be a good place to try on fake boobs for size so I didn’t even write that phone number down. The lady who picked up the phone was kind and told me that my insurance would pay for the visit and for the prosthetic, good news, so I set up an appointment for the following Tuesday.

“It’s no big deal,” said my mom who wears a prosthesis after her own mastectomy decades before. She had widespread early stage breast cancer, had a unilateral mastectomy and reconstruction, and fortunately her breast cancer has not returned like mine did. “See look at mine,” she said as she pulled it out of her bra and waved it at me. I laughed as I dodged it. She uses a prosthetic to create symmetry; reconstructive surgeries are far more sophisticated now than they were 25+ years ago. My mom is obviously comfortable with not only saying the word, but showing me the device. “It’s quite comfortable and look here at this area, it absorbs the sweat,” she was saying and pointing. I looked more out of the corner of my eye than dead onto it, I didn’t want to interact too much with my mom’s prosthetic breast. I didn’t want to face my own need.

prosthetic breast 2

We had a good laugh at the whole thing; sitting outside on the deck drinking Chardonnay with the sun on our chests as we shared our battle scars with each other. Anyone could have driven by and seen us, but we didn’t care because we were not alone in our suffering and we could laugh at our circumstance.

Next week,part two, after the fitting, which by the way seems like a very formal process. NOT looking forward to it. Not at all…

prosthetic breast 3 prosthetic breast 5

One Tit Wonder

One Tit Wonder  

I only have one boob, so what?

It would have been nice if everything worked out the way we plan for it to, but life doesn’t happen that way. I have come to expect that if something can go wrong, it will, and I am okay with that; besides, all of these adventures give me a lot to write about. It also gives me an enormous depth of empathy for others as they work through their own battles in life, and it gives me a lot of appreciation for what I do have; one disease free perfect breast.

It was after 6 pm when my plastic surgeon called. He said, “Thank you for seeing the infectious disease specialist today, I also saw him in the halls of the hospital and he shared with me his recommendation to remove your right breast implant.” “Yes.” I replied. “Trina, it is my recommendation as well, I just don’t think your body will accept an implant at this time. You have been through so much, we need to give your body a chance to heal and then we can revisit the reconstruction process later.” “Okay.” I quietly eeked out. I knew they were both right; my body was trying to expel the implant on its own, but disappointed doesn’t even begin to describe how I was feeling. I had endured so much: 15 surgeries to that breast, constant pain from the tissue expander for 9 months, 70 radiation treatments, 4 months of chemo, a year of Herceptin infusions, hot flashes from the Tamoxifen, blah blah blah…This part of the treatment was going to be the easy part; exchanging the tissue expander for an implant; the end of the tunnel, the finish line, over, complete, two breasts and no cancer. I had paid my dues, or so I thought.

The day before the surgery, I stood in the shower and broke down in tears, wailing sobs, shoulders shuttering tears, hands covering my face tears. Joe came into the bathroom and said in a quiet concerned voice “Hey, hey, what’s this about love?” “I’m just so sad about all of this, my body needs a break”, I replied. Joe sat in the bathroom with me while I finished crying and then he helped to dry me off with a towel and hugged me for as long as I needed him to. “I will love you no matter how many boobs you have”, he said, and I smiled because I knew that to be true, Joe is a good man, a very good man.

The morning of the surgery, I had a quiet resolve. I would be okay, I am a fighter, I am a survivor; I am a warrior.

Breast reconstruction surgery

Can I get a frequent flyer card for all of these surgeries please?

I expected to be knocked down emotionally after the surgeon took out the implant, and left me looking imbalanced, and for a few days I was. It took me 4 days to look under the bandages; I didn’t want to see the deformity that resided below the thick white gauze. Joe and I looked up Google Images of women who had one breast, so we had an image in our minds of what to expect. I knew it wasn’t going to be pretty, and I knew I would have to face my own image in the mirror sooner or later.

When I was finally ready, Joe gently peeled back the bandages and I could see by the look on his face that he wouldn’t be turned off by my lack of a mammary gland, fake or real. “It’s not that bad”, he said. I glanced down and took a deep breath, “Okay” I sighed. Looking in the mirror of myself was hard, is hard. The right side of my chest looks like a little old lady took out her dentures; the left side has a perfectly proportioned implant, it is kind of comical when you think about it.

On a follow up visit to the surgeon, we agreed to take it one week at a time and give my body the time it needs to fully heal. I let him know that my goal is full reconstruction and although I have been a pain in his neck for the last 5 years, our relationship wasn’t over yet. He smiled and said “It’s always good to see you Trina, and I’m glad to see your spunk is back.”

For now I will enjoy getting on with my life and you can just refer to me as the Unaboober, or how about Lefty, or you can stare at my platinum blonde hair and not even notice the disruption in symmetry. Either way, I am cancer free and happy.

Enjoying life after cancer

Watching my beloved son play Varsity Basketball

Surviving breast cancer

Enjoying life with my girlfriends.

Angry Boob

 

My breast is angry, and it is shouting at me and spewing vile. I am fighting with it on a daily basis, trying to save the implant that my body is vehemently rejecting. I have been thinking about my breasts non-stop for the past five years and I am getting sick of them, but they won’t let me rest. The right one in particular is like a defiant child; always in trouble, always causing problems, not to mention trying to kill me.

After I finished chemo, the surgeons took out the implant that was placed during the reconstructive process post-mastectomy. They explained to me that I would have to have a tissue expander placed in my chest wall to hold the space while I underwent my second round of 35 radiation treatments in the same right breast. The tissues contract around the implant or expander during radiation causing pain and dimpling, which can result in an undesirable cosmetic outcome. So the soft implant came out and the hard tissue expander went in. I had to live with this expander for 9 very long months. I was in constant pain and discomfort, picture a squeaky toy in your chest wall. Finally the radiation oncologist and the plastic surgeon agreed that it was time to swap out the expander for a nice soft silicone implant. That was on October 19. Here we are on January 11th and the incision from that surgery has never closed. One of the many side effects of radiation is that it degrades the tissue and the local vasculature system and healing can be prolonged and complicated. Translation: they burned the shit out of my breast and severed the blood vessels in an attempt to keep the cancer from rearing its ugly head for a fourth time.

On November 19th, my plastic surgeon performed an emergency surgery to remove the month old implant and replace it with a fresh one and then revise the incision to see if he could find some healthy skin that would heal. His thought was that there was a low level of bacteria on the implant and causing things to fester instead of healing. He put the dreaded drain back in and tried a stronger oral antibiotic to see if we could prevent my body from rejecting the implant. The incision still would not close. The prescribed antibiotics caused severe joint pain and I felt very ill and in a lot of post-surgical discomfort. I was feeling as bad as when I was going through chemo, I was expecting this part of the treatment to be easier. What was I thinking? None of this has been easy for me…

A week later, I went in for a scheduled appointment to see the surgeon and he added some stitches to the incision in his office. Not a pleasant experience at all, I struggled to maintain my composure. My son was my driver that day, and he had to wait for hours for me to get sewn up again. I was only concerned for his well-being and how the long wait was affecting him. It is very hard for him to see his mother going through so much pain and suffering and for so long. I try to hide it from him, but on this day I needed him to drive me to the surgeon’s office; so he had to experience seeing his mother in a weakened and needy state. I tried to lighten the mood by letting him choose where we would pick up dinner from on our way home. He was driving his new car, so he was enjoying that a little, but I could see the anxiety on his 16-year-old face. I wanted to protect him, not ask him to take care of me, but Joe wasn’t available and I couldn’t drive.

The additional stitches didn’t do the trick and the incision slowly opened up again from the force of the fluid building up and the foreign object in my body. An infection set in. I woke up one morning with a 102 degree fever and chills so violent that I thought I was having a seizure. I immediately called my surgeon. He told me that he wanted to start me on IV antibiotics and that I needed to stay in bed while we got this acute situation under control. I honestly didn’t have any intentions of going anywhere with 102 degree fever but I absorbed the seriousness of what he was saying.

The next day I was admitted to the “Day-Stay” department of the hospital to have a PICC line (peripherally inserted central catheter) put in my artery where the IV antibiotics can be infused at home instead of in a hospital. I was happy to have the option to stay out of the hospital, but having a PICC line inserted was no easy task. The specialized nurse used an ultra-sound to locate the artery in my upper arm that leads towards my heart and then after a meticulous sterilization process inserted a long catheter into the artery. Dangling from the end of the catheter are two ports; one for the antibiotics and the other to draw blood from if need be. He put a complicated sterilized bandaging system over the opening of the PICC line and then wheeled me to X-Ray to make sure the catheter was placed correctly. Since I am on the thin side, I can feel the catheter in my arm inside my artery. It gives me the heebie jeebies, and I don’t like it at all. It makes me feel vulnerable to have a drain coming out of my side, a PICC line in my arm and an open incision on my breast.

After about four hours in the hospital and my first dose of IV antibiotics, I was released to go home and rest. I was assigned a home health care nurse; Eli. Eli is adorable, calm, and compassionate. I like all of those qualities in a human being so I was happy he was assigned to me. He came to the house and set up the IV pole, as well as the bags and bags of supplies that we would need to care for the PICC line and  to get those infection killing drugs into my system. Eli got busy teaching Joe how to administer the antibiotics and to keep everything sterile. I was surprised at first that they would leave this to Joe to administer, but Eli reassured us that he would be coming daily until Joe had the process down cold.

My fever broke after a day or two on the antibiotics, but the incision still wasn’t showing any signs of healing. My plastic surgeon asked me to come into his office on a Saturday; he wanted to try to revise the incision once again and put the drain back in since he had removed it on an earlier visit. We were trying to buy us some time for the antibiotics to work. I took 2 Xanax and 2 Percocet before I went to his office, I knew he was going to “operate” on me again without general anesthesia and I needed to insulate myself from what was about to come. The drugs helped, but being awake while someone is knuckle deep in your chest is not for the faint of heart. He tried to distract me by asking questions about my son, but I could see his bloody fingers and feel the pressure of his hand inside me as he tried to push the implant aside to make room for the drain. He stitched me up and I stumbled back out to Joe who was waiting for me in the other room.

Two weeks of IV antibiotics have turned into four, and an additional broad-spectrum oral antibiotic was added to my treatment. The skin around the adhesive bandaging protecting the PICC line blistered and became weepy so I ended up at the Emergency Room with a possible PICC line infection. You can imagine how dangerous that is, since that catheter is in my artery leading to my heart; and the damn incision just won’t heal.

I was sent to see an infectious disease specialist to see if he could save this implant and get the area to heal. We knew each other from my two decades of being a pharmaceutical rep so he was very tender and kind with me and spent a lot of time talking to me and painting analogies to help me understand his opinion. Tears ran down my face as I heard his recommendation; the implant would have to come out.