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

Learning to be Thankful After Cancer

Cameron, Lily and Heather

Cameron, Lily and Heather

I am thrilled to introduce to you my very first guest blogger; Cameron Von St. James, who is pictured here with his wife Heather and their daughter Lily. Thank you Cameron for sharing your story of hope and inspiration with us.

Our holidays have always centered around family traditions and celebration of gratitude. However, seven years ago at the start of the holiday season, I felt that I had little to be thankful for.

In August of 2005, our daughter, Lily was born. We were looking forward to celebrating her first Christmas as a family of three, and my wife, Heather and I talked endlessly about our hopes and plans for our daughter’s first Christmas. However, in an instant all of our excitement and happiness was torn away. My wife was diagnosed with cancer, just three days before Thanksgiving.

Lily was just three months old when Heather learned that she had malignant pleural mesothelioma, a rare and very deadly form of cancer. We went from planning her first holiday experiences with family, friends and Santa, to medical options for fighting cancer. I was so angry that this was happening to my family, and I was terrified at what might happen. I learned quickly what mesothelioma was and what the chances were of survival. I did my best to be positive, but somehow all I could picture was the worst-case scenario; me as a widower with a daughter who would never really know her mother.  I truly felt in those moments that I had nothing to be thankful for.

Cameron and Lily

Cameron and Lily

Despite our fears in the next few days, we still had a Thanksgiving dinner. Heather’s family had flown in to celebrate Thanksgiving with us. Heather would start treatment in Boston soon, so it was really one of the last times for us to all be together. There was something else that we had to discuss. It was one of worst conversations since learning that Heather had mesothelioma. After dinner, we sat with Heather’s parents and talked about our finances, including all of our financial assets, debts, what we could liquidate and how to pay for child care and Heather’s treatment. Heather and I both worked, but money was already tight and with expensive travel and treatment looming, along with the fact that we would be reduced to one income when Heather started treatment, we were in financial trouble.  I was embarrassed and mortified to have to have this conversation with my family, and it would be years before I could look back on it with anything but shame.

Now, I realize how mistaken I was back then to view this time in the way that I did. I realize now how very lucky I was to be surrounded by people who cared about my family, who were willing to drop everything to be by our sides and make incredible sacrifices to ensure our well-being. The people in our lives really came through for our family and gave whatever they could to help us. While mesothelioma had devastated us, it hadn’t completely shattered what we always had together and it made us pull together even more that Christmas.

Heather, Lily and Cameron

Heather, Lily and Cameron

This holiday, I want to thank every single person who showed their kindness and support for my family. The love of my family and friends truly allowed us to celebrate a special time of year together. We now have a healthy little girl and more time to make many new memories and traditions around Christmas.  Thanks in large part to the love and support of our family and friends, we were able to make it through Heather’s treatment, and she beat her cancer. Mesothelioma has not been a part of our lives for over six years now, and we’ve been able to share many Christmas’ together with Lily.  We hope that our story can be a source of hope and inspiration to all those currently battling cancer this holiday season.

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? 

Thanksgiving: An American Tradition of Gratitude

 On the 4th Thursday of every November Americans gather with their friends and families to give thanks, and to indulge on turkey, mashed potatoes, and stuffing. Here a list of of things that I am thankful for this year, I encourage you to come up with your own list.

Vatican City, Rome

  • After completing chemo therapy in December, Joe and I took a celebratory trip to Italy in January. I was sick, bald, and nowhere close to recovered from the poisons my body endured, but my will was strong and I refused to wait another day to get on with my life. We visited; Rome, Florence, Perugia, Bologna, and Venice. It was magical and I loved every minute of it.
  • I am most thankful for all of the love and support that I have received from my friends and family this year. I sit in awe of the kindness that people have shown to me, everything from messages on-line, phone calls, cards, flowers, meals, visits, prayers, vitamins, rides to treatment, fund-raisers for cancer research and treatment, books, or a shoulder to cry on, my friends and family really stepped up and were there for me. I truly could not have made it through this year without this love and support, and I am humbled by it.

    Dirty Girls of Del Norte

    Trina and Reina after the ACS walk

  • I am grateful for Joe. Joe co-founded Jamba Juice, he carved out a hugely successful career for himself and when he was able to retire at age 40, he took on the monumental task of taking care of me, our (collective) three kids and our household while I battled cancer. He works tirelessly and never ever complains, instead, I hear him singing while he works. He has done an amazing job keeping it all together for us, and he does so in a loving way; I have learned a lot from him.
  • I absolutely love the maturity that my 16-year-old son Curtis demonstrated this year. Watching him blossom into a young man is such a joy  for me. He is my only child, and my illness has been incredibly hard on him. We have grown even closer over this past year and I treasure the intimate bond that I share with him. He inspires me to keep fighting every day.

    Curtis Junior Year

  • I am beyond grateful that I am cancer free today. After three breast cancer diagnosis, chemo, 2 rounds of radiation and 15 surgeries, I will always remain cautiously optimistic that the cancer won’t return, however, it is something I live with every day. What I have learned is that recurrent cancer is a host problem, meaning my body lacks the ability to effectively trap and eliminate carcinogens. I have spent this past year learning how I can support my immune system so that I may have a better chance of the cancer not returning again. Admittedly I became a little obsessed with reading the obituaries and when I saw a woman’s obit talking about how “she bravely fought cancer for x years but finally succumbed” I get very scared. Will this too be my fate? I am grateful it wasn’t my fate in 2012!
  • You know I have to mention my dog Dash, I will always be grateful for her sweet disposition and presence in my life. What a blessing this creature is to me.

    Dash

  • I am grateful that I got to see my dear friend Smith’s daughter Natalie get married. Being able to share this event with them fueled my body, and nourished my soul. Life is short, RSVP yes! to everything you can.

    RSVP – YES to everything!

  • I am grateful that I found the courage to write my story. My one book has turned into three and though not published yet, they soon will be! I have received feedback from people around the world that my story has touched; I am honored to be able to share it. I began writing because I was afraid that I would die of cancer before my son truly knew who his mom, the woman, the person was. He is not ready to read my story yet, but I am grateful that I did this for him and for me.
  • I am grateful for the lessons that I have learned this year; facing my own mortality has taught me so much about living.

    Joe’s garden nourishing my body

  • Yoga and meditation. They have changed my life and the way I handle stress. I recommend it to everyone. If you would like to take a look at meditation, Deepak Chopra is currently offering a free 21-day meditation challenge on the law of abundance. These are 15 minute guided meditation sessions that you can access by going to Oprah.com/Chopra.
  • I am grateful for my son’s tutor Sarah. She has become invaluable as he struggles to pass algebra. Today was his final; fingers crossed!
  • Our new kitchen appliances; cooking for three teenage boys is much more enjoyable with a nice range.
  • I am thankful for the continued benefits that I receive from a company that I have not been able to contribute to for over a year. I do not take for granted that they pay for my health insurance and that I still have an income because of their generous benefit program.
  • I am happy that my hair grew back. Bald is hard to pull off and wigs are hot and itchy!

    Venice, Italy

  • I am happy to have the tissue expander out of my body. I had a hard plastic “squeaky toy” in my chest wall for most of the year, and now it has been replaced by a soft implant. Unfortunately all of the radiation that I have had is slowing the healing time way down, but I have two gorgeous breasts and for that, I am grateful.
  • I am grateful for Oprah. The quality of the content that she airs literally saved my soul and I spent countless hours learning from her and her guests this past year.
  • I love the Mercedes I bought this year. I never talk about material possessions, because I really don’t care about them, but I really appreciate the quality of this car and the way it looks.
  • And lastly, I am grateful to YOU for reading all of this; YOU are touching my life one way or the other just by reading this, thank you.

    Indoor skydiving Curtis, James, Trina, Joe and Johnny

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.

The Quality of My Battle

Image

Not looking so good!

Ouch!

I am literally paralyzed with anxiety and depression. Writing this sentence is taking all of the strength and courage that I have left in me today. My fingers are throbbing from the nerve damage that the chemotherapy has left behind, and the drugs that the doctors have prescribed to ease the pain impair my cognitive function. Yet I gingerly and slowly type these words, because to not do so would take away what little power I have left. One more word written, one more step towards recovery.  I command myself to move forward; otherwise the nervous breakdown that is waiting for me behind the prescription bottles that are neatly lined up on my bed side table will win this war. I am in mourning. I am grieving the current loss of my healthy body that has always been strong enough to conquer any challenge that lay before me. I am grieving the loss of my position at a world class pharmaceutical company that I am not healthy enough to return to, and that they are no longer willing to hold open for me while I finish treatment. I am grieving the happiness that I used to feel. I am grieving the laughter that used to burst from my mouth easily. I am grieving the optimism that I just can’t seem to find today. I am grieving the loss of my hair, my eyebrows, my eyelashes and my fingernails which have or are in the process of jumping ship, knowing that this vessel is toxic. My right breast aches with pain from a recent surgery, and that requires a different pain medication that I swallow thru tears. Then there is the Prozac for the depression, but that doesn’t seem to be helping and my doctor has prescribed Wellbutrin to add onto it.  When my heart races and I can’t catch my breath because of the large anxious pit in my stomach I nibble on a low dose of Xanax to keep the mental breakdown at bay. “Is this my new normal? Is this the quality of my life from now on?” I ask my dear friend John who is a physician and married to my best friend Reina. “No sweetie, this is the quality of your battle” he replies.