The Results Are In

Let’s start with the good news, the uterine biopsy results came back as NOT cancer.

(Insert huge sigh of relief and many deep, gracious thanks for all the warm thoughts and prayers.)
 
Last week, while on vacation with my family in the Outer Banks, I began getting sicker. The pain / cramping grew worse and also moved into my lower back causing my legs to shake in agony. Every time I ate I got incredibly nauseous to the point that I kept a bowl by my bed. Not the way I imagined spending my vacation.

Over the course of two to three days I spoke with my oncologist, Dr. David Heyer’s office and my OB GYN, Dr. Roopa Duggal’s office over a dozen times. Dr. Heyer told me the issue sounded like it was being caused by the tissue build up which was the main issue that was never resolved during the biopsy. He advised that I stop taking the Tamoxifen and head to the hospital in the Outer Banks. Dr. Duggal told me that it sounded like I had a virus and ordered me nausea medicine.

I did a little of both. I stopped taking the Tamoxifen and started taking the nausea medicine to give me some relief during my vacation. I asked Dr. Heyer for the name of a doctor that could “fix me” having knowledge in both cancer and women’s health issues. I have no hard feelings toward Dr. Roopa Duggal. I am a bit of a medical anomaly and need someone who can treat all aspects of my health. I appreciate her honesty in being overwhelmed by the gravity of my situation.

Dr. Heyer sprang into action finding me a Gynecological Oncology and Pelvic Surgery practice in Annandale that he knew would help me. I met with Dr. G Scott Rose today and was instantly impressed. He was kind, thorough and told me that he would “fix me.” After walking me through my pathology report, he explained that I do NOT have endometrial hyperplasia, which I was told I did. Instead, I have uterine polyps, most likely caused by the Tamoxifen therapy I have been on for five years.

He scheduled my surgery for July 8 to remove the polyps and do a D&C to remove all the overgrowth. He explained the procedure, verified the instrument he needed was available at Fair Oaks Hospital, completed the paperwork needed for the hospital, wrote a comprehensive report for Dr. Heyer (which he emailed and faxed) and then scheduled my post-op appointment.

I was so overwhelmed by his confidence, attention to detail and compassion that I started crying in his office.

Dr. Rose:  “You’ve been through so much and at such a young age. I know these polyps and the overgrowth are causing you a serious amount of pain, so I’d like to get them out as soon as possible so that you can start healing.”
Me:  “I am just so overwhelmed. It is hard to keep explaining over and over how uncomfortable I am all the time. I’m so happy you are willing to help me. I am very grateful.”
Dr. Rose:  “I promise I will fix it.”

I'm not sure where we go from here. The bigger question is whether or not I go back on the Tamoxifen once the polyps are removed. And then, how do my doctors ensure that the polyps don't return. Do I have routine ultra sounds? Or will I be able to take a break from the Tamoxifen, in which case, is pregnancy back on the table? I have many questions, but I am going to focus on having this surgery and getting rid of this pain, first and foremost, so that I can resume my somewhat normal life.

Surgery Did Not Go As Planned

So, surgery did not go as planned yesterday.

Matt, my father-in-law and I arrived at 1:30 p.m. at Loudoun Hospital to do my registration. They ended up giving me the wrong paperwork. I was a mom being treated for anemia and had a 14-day-old baby with jaundice. I had to go back to registration to have my orders redone. That made me uneasy.

My mom and dad arrived and then I was taken in the pre-op area. I did an interview with a nurse the week prior to my surgery to go over all my medications, allergies and surgeries. None of my information was correct, so we had to go back through all my information again. That made me uneasy.

Then, there was a “Code Pink,” which we thought meant that someone was trying to steal a baby. Apparently there was a mix-up with paperwork or the mom got too close to the front door and her bracelet set off the alarm. The hospital went into lock down (meaning you could not get in or out) until they sorted out the issue. Apparently that happens several times a day. That made me uneasy.

Waiting on the anesthesiologist the lights started flickering in the hospital. I turned on my TV and Matt, my father-in-law and my parents watched the tornado warnings with me. The alert kept saying “If you’re in Lansdowne, take cover now.” The storm was right over us. My jaw started to lock and I felt the panic attack coming on.

All the surgeries were delayed 30 minutes until the storm passed. Dad and Pop were headed toward the cafeteria and the guards took everyone and pushed them into a room with no windows. It was so scary. I was more worried about my family being safe than my actual surgery.

Once I got into the operating room, I remember singing ‘Under the Sea’ with my anesthesiologist and when asked where I was, I apparently told them I was drinking lemonade on a porch in Georgia. Weird considering I don’t drink lemonade, nor have I ever been to Georgia. I just hope I was true to my character and gave them a little southern accent.

So, surgery was a mess. [NOTE: This is where I am going to go into detail, so if you don’t like this stuff, please skip to the end.]

Once they got into my uterus they cleaned it out. By doing this, they then could not find the 1cm mass/polyp. They think it came out with the cleaning. Now, the overgrown tissue was much more severe than originally thought. My surgeon Dr. Roopa Duggal took a small biopsy sample from one side of my uterus and a much deeper biopsy from the other side. Those two samples were sent to pathology to rule out uterine cancer, which is a concern being on the Tamoxifen.

They could not do a D&C (where they remove the overgrown tissue) because she couldn’t tell the difference between the tissue and the muscle and did not want to hurt me more than I am already hurting. The tissue growth expands down around my fallopian tubes. It’s not good and is causing me all the discomfort I have been having for the past few months. I have a feeling it won’t be long and I will be back in the hospital to have this build up resolved. It is so uncomfortable.

My pathology report should come back Tuesday or Wednesday, at which point Dr. Duggal will call me to review the results. I hope Dr. Roopa Duggal will talk with my oncologist to figure out where we go from here. If it is cancer, the decision is pretty clear. I have a hysterectomy. If it is not cancer and is being caused by the Tamoxifen I have been taking for the past five years, then we need to decide:

• Do I follow Dr. David Heyer’s wishes and stay on the Tamoxifen another five years? (which means continued build up, discomfort and no babies until the age of 36) 
• Do I take a three-month break from the Tamoxifen and get this tissue cleaned out and harvest and freeze my eggs? 
• Do I take a six-month to a year break from the Tamoxifen and get this tissue cleaned out and try and have a baby? Do I want to chance having my own baby knowing my hormones will go crazy and my cancer already likes estrogen? 
• Do I say, “screw it” and just have the hysterectomy, knowing I would need one any way before the age of forty, since I am at a high risk for ovarian cancer due to my estrogen positive cancer. And then we move on with adoption once we are in the new house. 

I’m not sure what the correct path is for me, but first things first, we need to get the pathology report back and then I need my doctors to talk. I have to think of my health first and foremost, which probably sounds selfish to a lot of people, but having babies is secondary to that. I just want to live as long as I possibly can and have a healthy life with my husband, friends and family.

Matt is much more logical than I am and doesn’t necessarily believe in my more spiritual view. I don’t like messing with “the plan.” Meaning, I am not sold on surrogacy, because it doesn’t feel natural to me. I cannot take fertility drugs because of the increased hormones. Then, I feel like I am tempting fate if I get pregnant and my estrogen levels rise. I could be pregnant and get cancer again. That would be so horrible. I believe we all have a plan and by messing with that plan, we don’t end up with what was intended. Meaning, maybe there are babies out there waiting to be adopted that are supposed to be with Matt and I.

Everyone has their own path and I am certainly not passing judgement on how other people create their families, I just know what I feel in my heart. I know we will have a family. I just don’t know how we’ll get there quite yet. It will come to us.

Let me get off my soap box. I will be sure to let everyone know what the pathology report says next week, until then, I am heading back to bed with my prescription-strength Ibuprofen and am on a break from swimming and exercise for 14 days. Time to get some reading and relaxing in.

My Double-Edged Sword

Dr. Roopa Duggal:   “You have a mass inside your uterus and need surgery as soon as possible.”
Me:  “Do you think ...” My breath left my body. “Do you think it’s cancer?”
Dr. Roopa Duggal:  “It could me a number of things, but ... yes, cancer is one of them. You have been on Tamoxifen therapy for five years now and one of the side effects is overgrowth of the uterine lining, polyps and uterine cancer.”
Me:  “I can’t believe this is happening." My jaw locked as it normally does right before a panic attack. "This feels like a nightmare.”
Dr. Roopa Duggal:  “We just need to get it out, because if we leave it and you become pregnant, the probability of losing the pregnancy is very high.”

"Other side effects [of Tamoxifen] are rare but are more dangerous. These include: Overgrowth of the lining of the uterus (endometrial hyperplasia) and cancer of the lining of the uterus (endometrial cancer).” -- WebMD 

The good news is, the shape of my uterus is normal. It looks like it’s in the shape of a lightbulb, although it is very narrow. There is no malformation and my ovaries are very healthy. The problem is, with the mass and the overgrown uterine lining, the inside of my uterus looks like an hourglass. I am experiencing continuous cramping and frequent bleeding.

My surgery is confirmed for Thursday, June 13 at Loudoun Hospital with Dr. Roopa Duggal. They will remove the mass and the overgrown uterine lining (D&C) and then send both for pathology. Then I wait to find out what all this means for me ... is it cancer?

This Tuesday, I have my six-month appointment with my oncologist, Dr. David Heyer. I plan to talk through what my different options might be considering this new development. I am preparing myself for several scenarios, which could include stopping the Tamoxifen four months ahead of time or even needing a hysterectomy.

My heart is heavy and I am trying desperately to stay positive, but it is not easy. I hope this mass is simply a polyp and I will be able to stop taking the Tamoxifen. I want desperately to just be healthy and to live out my days as long as I can with my husband, family and friends. I don't know why I, along with countless others, are continually tested, but I do know that it only strengthens my faith, love and hope.

Hemoglobin Smemoglobin

I don’t know why, but I have always scheduled all my annual medical appointments in April. I guess I just like to get them all done around the same time so that I can move on with my life and enjoy the more mild weather that comes with spring.

This year was no different. I quickly filled up my calendar with my primary care physical, dentist appointment and eye exam, complete with a retina x-ray. That’s right, I don’t skip out when it comes to my medical care.

At my primary care physical I asked for the works ... if we’re going to do this thing, let’s be thorough. This included a full mark-up of my blood (after fasting for 12 hours for an accurate reading).

My results were an A+. 

The three page report only flagged three tests that were outside the referenced range:

• My MCHC was low at 31.4 and should be within 31.5-35.7. This is my iron level and I have always been a little low. During chemotherapy I dropped to an anemic level. This number didn’t surprise me considering the bleeding issues I have been experiencing due to my newly found uterine polyp. 
• My Eos was high at 8% and should be within 0-7%. An absolute eosinophil count is a blood test that measures the number of white blood cells called eosinophils. Eosinophils become active when you have certain allergic diseases, infections, and other medical conditions. No surprise there that my allergies are wreaking havoc on my life when I had my blood work done. 
• My LDL Cholesterol was high at 105 and should be between 0-99. That one I don’t have a correlation, however my doctor wrote, “These are all fine.” However, I will keep a note and make sure to watch that number next time I have my blood work done. 

I was pleased that my thyroid and calcium, along with all my other numbers, were excellent, since those two were numbers my OB GYN wanted to validate.

Cytotec Causes Contractions ... Good to Know Before Taking It

In preparation for my (1) a pelvic ultrasound with transvaginal/Doppler prn and (2) Hysterosonogram, I was given Cytotec to take 24 hours and then 12 hours before the procedure. I was unaware that this drug is given to women to induce labor and causes full-on contractions. Um, I don’t know if I could survive child birth, because I was on the couch sweating in serious pain with a heating pad last night. Dear, Lord, that was no joke.

This morning was the procedure and it could not come soon enough considering the contractions I was experiencing on the Cytotec and the 32 ounces of water sitting in my bladder. I will save you from the details of the procedure since it was very intense. The Cytotec was basically to dilate me so that the doctors could put a catheter into my uterus and inflate a balloon with saline to get good images. Oh, and there was no numbing … just full-on pressure and discomfort. *sigh*

The good news is my uterus, cervix, ovaries and fallopian tubes are all very healthy, which is what I wanted to hear.

I don’t consider this bad news, but once inside my uterus, the doctor found a small polyp the size of ¼ inch. Basically the top and bottom of my uterus are open and this thing is sitting right in the middle, making it hard for the lining to shed monthly … hence why I am having irregular bleeding. My uterus looked like an hour glass with hardly any opening in the middle.

The doctor reassured me that this polyp is benign and very common. It was most likely caused by the post-cancer medication I am on called Tamoxifen, which suppresses the estrogen in my body.

“Although the exact cause of uterine polyps is unknown, hormonal factors appear to play a role. Uterine polyps are estrogen-sensitive, meaning that they respond to estrogen in the same way that the lining of your uterus does — growing in response to circulating estrogen.” – Mayo Clinic 

“Risk factors for developing uterine polyps include: Tamoxifen, a drug therapy for breast cancer.” – Mayo Clinic 

The other good news is that uterine polyps are easy to fix … they simply remove them. I will be having an endometrial biopsy anyway in the coming months, so I will have this little polyp removed, also. They will most likely send it off to pathology in order to be safe. Between having it removed, going off the Tamoxifen in October and understanding that rarely, uterine polyps can recur, I am pleased with the news and how things are progressing.

Next up, stay tuned for the endometrial biopsy and polyp removal …

A Plan Set in Motion

I have always been open and honest about my journey. I figure if it is too much information for someone, they can stop reading, right?. For me, it is important that I document all my experiences with my health so that I might help someone else out there. If my story helps just one person, then all of this was worth going through.

Today I met with my new and amazing OB GYN named Roopa Duggal. She deals with high-risk patients and I figured with all my medical drama, I belonged in that category. We set a plan in motion to get me healthy and well in order to try to have a baby starting January 2014, if Matt and I so choose. 

• I will start taking a calcium supplement (1000 mg daily) and decrease my D3 intake to 600 to 1000 mg daily.
• I will continue weaning off the anxiety medications (Effexor and Xanax) since I can't take them during pregnancy.  Over the last seven months I have decreased my dosage from 150 mg to 37.5 mg and I feel amazing!
• There is some concern about the irregular bleeding I have been experiencing. Dr. Duggal has requested: (1) a pelvic ultrasound with transvaginal/Doppler prn and (2) Hysterosonogram. These two tests will explain why I am experiencing the bleeding and ensure that everything is healthy and functioning correctly. This will eliminate the possibility of diseases like ovarian and cervical cancer along with issues, like ovarian cysts and uterine fibrosis. 
• I will have a full blood markup, including Prolactin, Thyroid-stimulating hormone (TSH), Beta HCG, HbA1c and Vitamin D3. 
• I will have an endometrial biopsy to test the health of my uterine lining. 
• I will have a full women's health exam in August, just like I do every year. 
• I go off my post-cancer medicine, Tamoxifen, in October that I've been on for five years.
• In December, I will have a hormone profile done in order to determine the health of my ovaries and eggs. This consists of blood work testing my FSH, LH and Estradiol. 

If all those things are beautiful, she will clear me to start trying to get pregnant in January 2014.

2012 Highlights

A lot happened this year, which is part of the reason why I haven’t written as frequently as I usually do. (Sorry! I promise I am healthy and all is well in life and love.)

With that said, I decided to take a look back at 2012 and pick my top 10 highlights.

10. Woolif Fotog
Matt took his photography to a new level this year launching Woolif Fotog. I am so proud of him. For as long as I have known him, he has been passionate about his photography and also ending homelessness. He has started his powerful photo documentary to bring attention to the cause. For more information or to view his portfolio visit his website http://www.wooliffotog.com/.

9. 6 lb 9 oz Healthy Baby Boy 
That’s right, our sweet little Chihuahua Jasper is full grown now at 6 lbs 9 ozs. He turned three years old this November and continues to be the love of our lives. I don’t know what we did with ourselves before Jasper. He is our whole world and we love him dearly.

8. Refocusing on My Thesis 
Now that my life has settled down a little bit, I can resume my Masters degree. I was one of nine students accepted into the Journalism School at the University of Missouri-Columbia in 2006. I finished the academic portion of my degree in just two years. It was in 2008 that I started my thesis and was diagnosed with stage-III breast cancer. I could not work on my thesis and focus on my health at the same time. Now that I am healthy and happy, it’s time to finish that thesis and obtain my degree. I can’t wait to cross this accomplishment off my bucket list.

7. Going International 
In June, I had the opportunity to take on a new position at work that I am loving.

I have been at Verisign for over two years now. For a year and eight months, I worked as a Digital Marketing Producer managing the content strategy and project management for VerisignInc.com, watch.tv, makea.name and verisignlabs.com, and maintained the Web presence that supported both end-user and business needs. I drove strategy and implementation of new product features on the websites based on research, user feedback, stakeholder/business requirements and performance analytics.

In June, I had a chance to grow my portfolio and move into a more strategic role leading the strategic implementation of localized content for 26 country sites of VerisignInc.com (in 15 languages) and the management of the content localization and translation processes. I am loving this new role and am learning so much.

6. Matt’s New Jobs 
This year Matt finished his internship at CACI in Chantilly when he graduated from George Mason University. He joined Booz Allen Hamilton as a Consultant, but quickly realized the work wasn’t something he enjoyed. After six month at BAH, he took an offer with Aol as a NOC Analyst which he is enjoying greatly.

We are so blessed to be in a location where the job market has not been impacted as hard as some other places. I think sometimes it is just as important to know what you don’t like doing and what doesn’t work, so that you can validate what you do love. We are thankful for Matt’s new job at Aol and hope he will have a long and successful career there.

5. Four-Years Cancer-Free 
I celebrated my four year anniversary this year of being cancer-free. I have one more year on the Tamoxifen, which suppresses the estrogen in my body, since my cancer was estrogen positive. Once I complete the Tamoxifen, Matt and I will have the opportunity to try and have a baby.

I also had the BRACAnalysis® Rearrangement Test (BART) genetic test done this year. When I was diagnosed with stage-III breast cancer in January 2008, there were only two breast cancer genes that had been identified that I could be tested for. I was negative for both BRCA1 and BRCA2, which means I don’t carry the breast cancer gene. There is a new test called BART, which detects rare, large cancer-associated rearrangements of the DNA in the BRCA1 and BRCA2 genes, which were previously undetected by standard genetic testing called comprehensive BRACAnalysis®. This test also came back negative, which was good news for Matt and I since we’d like to try and have a family. Good news all around for us!

4. Joey Enrolled Back into College 
One of the most exciting things that happened this year, is that I helped encourage my brother to enroll back in college to finish his college degree. He is just a few credits shy of getting his bachelor’s degree and after several months of analyzing his credits and looking at schools, he found his program at Strayer University. His first class was on comparative religion and on his final paper he got an A. He finished the class in December with a very honorable B. Here’s to a successful academic year in 2013. I’m so proud of you, Joey! Remember, it’s never too late.

3. Jenn is Cancer-Free 
My cousin and bestfriend, Jenn, was diagnosed with stage-IV breast cancer in 2012 (four years to the exact day of my diagnosis). You can read more about her journey on her blog: Not Jenn's Cup of Tea.

Jenn's diagnosis rocked my world emotionally. I stood by Jenn every step of the way as she went through chemo, radiation and surgeries. By doing this, I was reliving my own experience and had some very real post traumatic stress. I had no idea that there was a lot of emotional pain and grieving that I had not dealt with. Jenn gave me the gift of grief and in doing that, she and I were both able to heal together.

She continues to miraculously be cancer-free. Her team of doctors keep watching her closely to ensure she stays that way. She and I knew our lives were intertwined, but we never knew our bond would be this strong. She is one person in my life who can truly understand my thoughts and feelings, as strange as they might sound to others.

2. Matt Graduated from George Mason University 
When Matt and I started dating back in 2009, he was enrolled at George Mason University, trying to finish his bachelor’s degree. For his birthday that year, I purchased a diploma frame and hand wrote a letter inside telling him that his degree would be our number one priority and goal and that together he would finish. The letter said that once he got his diploma that we would hang it beside mine in our office. Three years later, we were able to hang our diplomas side-by-side. This is one achievement that is his, and his alone. No one can ever take this away from him. Education is one of the most important things for self development and I am so proud of him for finishing his schooling. It was a long road, but one that was worth the effort and patience.

1. From Miss to Mrs. 
MATT AND I GOT MARRIED!!! On Sunday, September 23, 2012 at Historic Whitehall Manor in Bluemont, Virginia, Matt and I said “I do” in the presence of our amazingly supportive and loving friends and family. There wasn’t a dry eye as we read our written vows to one another. It was such a beautiful and really emotionally powerful moment for me. We are so happy!

Not only did I get a husband, but I have a brand new family that I love dearly. Matt’s father, Philip and his girlfriend Jan, Matt’s three brothers: Steve, Jeff and Chris, two sisters-in-law: Amy and Wendy, five beautiful nieces: Rachael, Sydney, Brynn, Ainsley and Zoey and a handsome little nephew, Casey. I adore my new, extended family that has been so loving and welcoming to me.