Gina’s Cancer Journey

By July 8, 2014 Stories No Comments

 

Life is not about waiting for the storms to pass… it’s about learning how to dance in the rain.

In the last four years, I’ve survived two cancers. It took seven surgeries and radiation, which came with a letter that said I was legally radioactive. I won my fight against both cancers for two reasons. First, the care and skill of my team of doctors and nurses at the UC Davis Medical Center, using the extensive research on thyroid and breast cancer funded by groups like the American Cancer Society. And two, I was lucky. You will hear that word frequently in my story. Both cancers were detected very early which meant my chances of survival were drastically improved. Lucky. But luck is not something to be counted on; we need to turn that luck into better detection methods and a real cure. Because, all we have right now is a treatment and that is not the same as a cure.

Before I go into my cancer journey, I need to give you a little background so you can understand why I chose to face mine the way I did. My brush with cancer was nothing compared to what my mom went through. In 2003, she was diagnosed Stage 4. Her cancer had already metastasized beyond the point where her doctors could identify the original cancer. They gave her a 90% chance of not surviving a year. I admired the determination and grace that she strove to maintain during her battle. She fought through three years, suffering round after round of chemo, and I knew the moment she gave up. She had been very fearful during her battle: of the doctors, of the treatments, of the disease. So that was my view of cancer: what she went through. What killed her at the age of 69 on February 1st of 2006.

Four years later. 2010. I was 40. I get the call. It was February again, the 24th, and I was on a business trip. My cell phone rings right about the time I’m getting ready to leave my client’s office for the evening. My doctor tells me that she has the results of my biopsy. Before I’d left on my trip, I’d had a needle biopsy done on two nodules that they’d found by accident in my thyroid earlier that month. I clearly remember my doctor saying: I usually don’t like to do this over the phone. And then she told me that I had thyroid cancer. I really didn’t hear much of what she said after that. I know she tried to reassure me that thyroid cancer was very treatable, the one that she would choose, if she had to pick one, and it had been caught very early.

I was lucky. I didn’t feel lucky. What I knew about cancer was what my mom had gone through. I remember hanging up and walking out of my little office into the main room. One of my clients saw me, and my face must have shown my shock because he walked up to me and asked if I was all right. And I remember looking up at him and saying, “I have cancer.” He hugged me, told me I could beat it, and I started crying. I called my husband on the way back to the hotel, and he was on the first flight out he could book. During the remainder of the trip, I spent my off time Googling everything I could about thyroid cancer and it’s treatment. I think I hit every reputable medical website on the internet, including the American Cancer Society’s online resources, which provided me a tremendous amount of information on thyroid cancer and gave me the tools I needed to talk to my doctors when I got back to California.

But I still had a lot of questions. Would I need to go on disability? How were we going to make ends meet if I wasn’t working? So I called the American Cancer Society’s 1-800 number and spoke with a very nice man about how they could help me. I remember he gave me a summary of all the programs they offered and spent the most time explaining about their transportation assistance. But more than anything, what he did was show me that I wasn’t alone in my fight, there were places I could go when, and if, I needed help. And while I didn’t end up taking advantage of any of the options he discussed with me because my boss kept paying me throughout the time I took off and I had my husband to drive me, it was reassuring to know I had those options should I need them. My husband was incredibly supportive. He took me to every appointment, radiological test, and surgery, getting himself in trouble with his bosses, but never letting that stop him.

I told you I was lucky. Let me explain how. They found my cancer because I have an autoimmune disorder that happened to flare the previous year and had me under routine abdominal scans. It was a fluke they found the thyroid cancer. But they caught it very early, which is everything when it comes to successfully treating the disease. After the diagnosis, I could feel the larger, marble sized nodule in my throat that I hadn’t noticed until it was pointed out. The first step in treatment was to have my thyroid and any infected surrounding tissue removed. I love my surgical oncologist, Dr. Martinez. He’s saved my life twice now. Before the surgery, he very carefully explained what he was going to do, and while I heard him tell me that he planned to remove the thyroid and all the lymph nodes on the right side of my neck, I really didn’t know what that meant. I’d talked to a thyroid cancer survivor a few weeks before, and she’d described her scar as being just over an inch long across the center of her throat, so that’s what I was expecting.

Gina Post-Thyroidectomy

Post-Thyroidectomy

Well, on the day of the surgery, he comes in, after I’ve been prepped, with a purple surgical marker and a mirror. He tells me that he thought I’d like to know how big the scar was going to be, so I could prepare myself. He takes the marker and puts it behind my right ear and draws a line down and across my neck just below the Adam’s apple. He gave me a mirror so I could see; it was much longer than that inch sized one that I had expected. That’s really when the reality of what was happening hit me.

I’d seen my mom go through her treatment, and after I was diagnosed, I had been determined to handle my situation better. After all, my survival chances were exactly opposite of hers. I had over a 90% chance of successful treatment. So I decided that I was going to accept what was happening to me and be positive, optimistic, and look for the silver lining that this experience was meant to teach me. I would not allow myself to be fearful or panic over something I had absolutely no control over. One of my friends, later, called my method of coping the ‘comedian warrior,’ because I joked a lot about the various stages of my recovery. My husband helped keep me in good spirits whenever my will flagged, and I don’t know what I would have done without his care and unflagging determination that I would get well.

Prepped for surgery and seeing that long purple line, I reached for my humor and told my husband that I’d be right there with Nearly Headless Nick. But I think, that surgery, of all of them, was the one that most scared me. It also taught me how much we take for granted having a whole, healthy body. Until I healed and rehabilitated my neck, just sitting up in bed was incredibly difficult. But every day I did. And every day I walked a little bit further, until after the second week, I could walk down to the park and back, and after the third, I could go 3 miles. I refused to let anything stop me.

Two months later, it was time for the radiation. This doesn’t work like most cancer treatments that apply the radiation to the site of the cancer. No, for thyroid cancer you take a pill of radioactive Iodine. I was given 149 millicuries, which is enough to peg a Geiger counter and set of radiation detectors in airports, federal buildings and sports arenas. Hence, the letter that said I was legally radioactive, so I wouldn’t be arrested! It literally makes all bodily fluids radioactive: sweat, saliva, tears, urine, everything. The pill comes in a lead-lined jar, and once I took it, all the doctors took a big step back and shooed me out of the hospital. While the radiation was at its most concentrated, I had to remain in complete isolation for five days and another five before anyone could come within 6 feet of me for longer than 20 minutes. Yes, my husband slept on the couch. I had fun making a radioactive hazard area sign for the bedroom door. My husband would leave me meals at the door, all on paper plates and plastic utensils, so they could be disposed of afterwards. Because the radiation was in my sweat, anything I touched I could contaminate, so the items I wanted to keep, I wrapped in plastic: cell phone, computer, pillow, and mattress.

And just like that: cancer treated. Done. Or so I thought. But there are consequences to surviving cancer of which I was totally unaware. It took me six months of physical therapy to turn my head again. Four months after the radiation, my cheeks swelled up like a chipmunk’s because the radiation had irritated my salivary glands. And this can happen again at any time. Last year, I had two surgeries to reconstruct my tear ducts because over time the radiation caused scar tissue to completely close them. I’m on a synthetic thyroid hormone to replace the gland they removed, and that will never go away. They keep me hyperthyroid to reduce the chance of the cancer coming back, and there are quite a few consequences that I have to deal with from that, which I found could mostly be held at bay by walking.

I walk a lot now: between 10-14 miles per day! The cancer has a 30% chance of recurrence up to decades later, so I have to be monitored for the rest of my life. But compared to my mom, I didn’t see what I’d survived as being on the same playing field. And at first, I had trouble really accepting that I should be numbered as a cancer survivor. I didn’t feel like I’d done anything to earn that title. No chemo, not a real cancer. I know that’s not true, that what I’ve been through was not easy. I survived cancer and there was a cost.

Then, in December of 2010, after I was mostly recovered from the thyroid surgery, I found one of my silverlinings, through my experience with all those medical procedures, when my dad, and then two months later my mother-in-law, went into congestive heart failure, my husband and I were able to help them through the final year of their lives,navigating the hospital stays and being more able to understand and deal with their doctors.

My first question was to ask if I could have the same surgeon. Dr. Martinez is my superhero and I knew if he was there, I’d be just fine.

Two years later. February again. Now, 2012. Three months after I lost my dad and four months before I would lose my mother-in-law. I went in for my annual mammogram. A couple days later I get a call. Can you come back in? Your breast tissue is very dense and we need to reimage your right side. I’d had that before, so I didn’t think much of it. Afterwards, the radiologist came out and said that the cell structure they were seeing in the mammograms fit a certain suspicious pattern and that they wanted to biopsy my breast tissue. I thought of the needle they used to sample cells from my thyroid and didn’t worry, but the instrument they used looked, sounded, and felt like a drill! Worse, cancer hadn’t finished with me.

On February 27th, I get a call from my doctor while I’m cooking dinner. She opened with: I really hate to tell you this; you’ve already been through so much. The biopsy results came back positive. You have ductal carcinoma in-situ, or DCIS, breast cancer, right now it’s not invasive but the cell structure is very highly aggressive. My instant reaction I can only describe as a fight response. My focus sharpened, my mind started creating a checklist of things I needed to do, and I could feel my anger rising. My first question was to ask if I could have the same surgeon. Dr. Martinez is my superhero and I knew if he was there, I’d be just fine.

When you have two unrelated cancers, one of the first things the doctors do is send you to talk to a genetic counselor. I got the BRAC1/BRAC2 testing because of the breast cancer, but I also got tested for another genetic syndrome that can cause both of my cancers that I found far scarier because if I was positive for that, I had the potential of developing a lot more other types of cancers. But I was lucky again. Both tests came back negative. My two cancers were random, garden variety, bad luck.

On March 12th, they tried a lumpectomy, thinking the cancer was localized enough to take out a tablespoon sized section out of my right breast, but when I woke up, my husband told me what they had removed was more like the size of a baseball, because the cancer was a lot more extensive than the imagery showed. By the end of the month, the pathology results came back: they didn’t get it all. In fact, it was a lot more widespread throughout the whole breast structure than they thought and had started to turn invasive.

So on May 3rd, I opted to have the entire right breast removed. I wanted to be sure they got it all and that way I could also avoid radiation. I’d had enough radiation already! Because I chose to have reconstruction done, I had two surgeons. Dr. Martinez removed the breast and the sentinel axillary lymph node, which they would test to make sure the breast cancer hadn’t passed into the lymphatic system, and a plastic surgeon would perform the first step of the reconstruction, which basically amounts to putting a plastic bag under my chest muscles to start stretching them, so he could put in the permanent implant later. My husband and I had met the plastic surgeon two weeks before the surgery and had been warned that he didn’t have much of a bedside manner. Dr. Martinez said that if he warned the patients he referred to him, they tended to like him better. Well, at one point during the appointment, the plastic surgeon said: you are a big girl and your breasts are rather small, would you like them bigger? I laughed and said: I just want them to be symmetrical. And he looked at my husband, as if to check that my answer was okay with him! My husband very wisely said that it was my decision. But for all of his lack of empathy at first, he really was an excellent surgeon and did a miraculous job, especially given that the number of surgeries I was having was causing me to develop allergies to all the commonly used antibiotics used during procedures. Over time, we did warm up to each other and by the end of my reconstruction, I have to admit that I rather liked him and he would talk to me about more than just the latest step.

Gina Pre-Mastectomy

Pre-operation for mastectomy. 

You are allowed no dignity in this surgery. One of the things they do while they are prepping you, is the two surgeons come in and mark you up for the procedure. That purple pen again. But this time I had to stand up and expose my chest to the two men and let them draw their diagrams on my breasts. And the plastic surgeon had to take the before pictures. So here I am, my gown down around my waist, IV cord hanging from one wrist, arms spread so they can get a good picture of me. While the plastic surgeon checked the photos, Dr. Martinez helped get my gown snapped back into place and assisted me onto the gurney. I thought their actions spoke to the mentality of the two doctors. Dr. Martinez really impressed me with the empathy and compassion with which he always treated me.

Compared to the thyroidectomy,the mastectomy was the more emotional of the two surgeries, which I was not at all prepared for. After the surgery, I couldn’t lift more than ten pounds, open doors, or do much at all with the right arm for about ten days or so, which was more than a little frustrating since I hate not being able to do things for myself. Twice, my plastic surgeon inflated the plastic bag in my chest to make my brand new breast a little bigger, a little more normal looking. Well, except for the fact that I could feel the plastic bag under my skin. I joked that my breast went from looking like a flat tire to only a slightly deflated one after the first fill. But I found I had trouble looking at it and I cried a lot. I never gave much thought before about what they looked like, but now I felt like I’d lost something, something important. There was this strange shaped, scarred appendage there now that wasn’t mine, wasn’t me. Seven months after the mastectomy, I had the final implant put in, and another five months after that, in April of last year, the nipple reconstructed. So this is not a quick process. It took me a year to get my breast rebuilt.

By the end of it, I was very ready for it to be over, and again used my sense of humor to hold the stress at bay by naming the different phases of the reconstruction process. And it didn’t help that the nipple reconstruction developed a problem; my body rejected the skin graft they use to recreate the areola. I laughingly called that stage my zombie boob, because I had this really nasty looking, basically dead flesh attached to me. But now, two years out from the mastectomy, I have to say it looks pretty normal. It doesn’t feel normal though and I don’t think it ever will. I talked to another breast cancer survivor, right after my diagnosis, who also had a single mastectomy. She said that since her surgery her breasts were only sisters and no longer twins. I understand what she meant now. My right breast will be forever 20, while my left will turn 45 this fall.

I do not regret the path my life has taken because it has made me the person I am today.

Looking back over everything I’ve been through, I do not regret the path my life has taken because it has made me the person I am today. My fight has made me stronger, more confident, and it has stripped me of many of the fears that held me back. But my body will never be what it was before, and I will spend the rest of my life being checked and rechecked to make sure that nothing has come back. During the last four years, I’ve also lost more family and friends to cancer, and watched others turn into survivors. I’ve seen the grief in my friends over the loss of a loved one to cancer. And that has filled me with a tremendous desire to do something to take the fight back to the disease. At first, I talked to people that were more recently diagnosed, with whom friends asked me to speak or I knew personally, and I found it immensely rewarding to share my experiences with them. And then, last year, I found Relay For Life.

The American Cancer Society has some wonderful online survivor support, like the ‘What’s Next’ program, in which I participate. It’s kind of like Facebook for survivors, where we can share our stories and know that we are not alone. But Relay: that’s where I found a group that really understood what I’d been through and wanted to actively fight the disease as badly as I did. To see so many people willing to give up their free time to fundraise money that would ultimately support research that could cure people in my situation, to meet fellow survivors and hear their stories, I knew this was something that I had to do. Our current treatments are just that: treatments. It’s time we found a cure.

For More Inspiration…

My Personal Relay page: http://main.acsevents.org/goto/gvondamm

Relay For Life of Davis Event website: http://www.relayforlife.org/davisca

California Relay For Life website: http://relay.acsevents.org/site/PageServer?pagename=RFL_CA_Home

Main image by Wayne Tilcock & The Davis Enterprise

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