Cancerversary: March 2012

Age at diagnosis: 54

Diagnosis: Cervical cancer (unspecified)

Stage of cancer: II

How my story begins: I didn't keep up with regular OB/GYN as my doctor had died a few years before. I'd had relatively normal PAPs over the years, with the exception of one abnormal PAP in my 30's showing dysplasia, after which my gyn did a LEEP to remove dysplastic tissues and my PAPs returned to normal. I had completely normal, easy pregnancies and deliveries, and went through menopause with less than four hot flashes and my period just stopping. I remember a few night sweats, but that was it. After a year of no periods I assumed I was through it and wondered what all the fuss was about. I was 50-51 yrs old. A few years later, I began to notice that intercourse was becoming uncomfortable and then the bleeding after started, which increased to pain with intercourse and steady bleeding. At that point I knew I needed to see a doctor. My cousin got me an appointment with her group. I was nervous but resolved, knowing it was likely cervical cancer.

Life before my diagnosis: My life before my diagnosis had its ups and downs. Up until the age of 49, I was blessed with very good health and had no health issues. At 49 however, I experienced a ruptured brain aneurysm putting me into the ICU and in a coma for 3 weeks with a prognosis that IF I survived the night, I would be severely impaired. They performed an endovascular coiling procedure through my femoral artery up to my brain and coiled the rupture to stop the bleeding and drain the blood and fluid from my skull. I woke feeling hungry and to make a long story short, aside from muscle atrophy from being bedridden for a while, had NO IMPAIRMENTS. I was a miracle - as those who experience a cerebral rupture and survive with no impairment are in the .02% group. Many don't survive the rupture and make it to the hospital. I was released from the hospital with a prescription for a multivitamin and baby aspirin a day and keep my blood pressure down. After recovering from my hospital stay and two years of angiograms to check the coiling, my neurologist released me to PCP care as the coils had never moved and the rupture was effectively repaired. The only effect from the incident was an anxiety condition that was controlled with low dose anti-anxiety meds and careful watching of my blood pressure. Three years later, my oldest son, who had suffered with Type 1 Diabetes, passed away at the age of 32. He'd been diagnosed at age 13 and his last several years were rough as the disease ravaged his body. He was legally blind with failing kidneys, severe neuropathy pain and countless other Diabetes-related conditions. He passed in his sleep on June 4, 2009. Part of me broke but part of me also felt blessed for him that he passed peacefully and escaped the suffering that was surely ahead for him as his organs failed. In 2011, after surviving two of the most difficult things of my life, I began to feel pain with intercourse and began bleeding. Having skipped a few years of my yearly GYN exams, I just knew.

How I felt after diagnosis: When I went to my appointment, the doctor was very cautious with her diagnosis, doing a colposcopy and saying that my cervix was very abnormal. I guess I was more matter of fact than she expected when I told her I knew it was likely cervical cancer. Before even getting the results, she told me it WASN'T a death sentence. We set up an appointment with a gynecological oncologist. I chose Mercy Hospital, the hospital that saved my life with the ruptured aneurysm, despite the distance I'd have to travel. The slides confirmed my suspicions and my feelings were, "I can beat this." I beat a ruptured aneurysm. I survived the loss of my first born. I can beat this.

Telling my family and friends: My husband was a wreck after going through the ruptured aneurysm with me. So was my family. I was anxious but kept a positive attitude and faith that I would get through this, too. I remember I told my family at Thanksgiving dinner. I found I was doing more reassuring of them than the other way around. I explained the plan of treatments and the good prognosis.

My treatment: My head doctor at Mercy was wonderful. He was the head of the Women's Oncology department and somewhat of a legend himself, as I found out later. He reminded me of an old cowboy and was no nonsense. He completely put me at ease, telling me I was 2B and I could look it up if I wanted. He was more in awe of my survival of the rupture and had known my neurologist. He set up my treatment plan and then found centers near my home where I could go so I wouldn't have to travel to Pittsburgh every day. I actually was able to work through the majority of my treatments, until the very last when my white blood cell count went down and the fatigue became too much to handle my job effectively. I went through the radiation and chemo with no problems at all. The brachytherapy, which I had to travel to a women's hospital in Pittsburgh for, was a NIGHTMARE. I went in the day before and had a stent inserted into my cervix under general anesthesia, outpatient surgery. The next day I went for my 1st treatment. I had the high dose radiation type so was outpatient and not sedated. Initially, the device they made to vaginally insert to direct the radiation was too large and it was excruciating, causing me to actually cry. I'd never felt such pain, even in childbirth (which I had completely natural with both of my kids). It caused profuse bleeding and they kept giving me pain pills that did nothing. I went through the procedure and once it was all removed felt better. I went back two days later for the second treatment. They had reworked the device making it smaller but it was still painful though bearable and nothing like the 1st treatment. I made it through all 5 treatments and the doctors told my husband that the tumor was already gone by the 3rd but that I needed to finish the complete treatment plan. I had 2 more external beam radiation treatments to make up that were cancelled due to snowstorms and would have had a 5th chemo but due to the low WBC they decided to skip it because I didn't need it. My PET scan came up completely clear and I was released to my GYN for 3 month PAPs for a year, then 6 month PAPs for a year, then, if all continued clear, back to my yearly exams.

How I felt after treatment: I felt exhausted after treatments but also relieved and blessed that I was able to beat it. I'd kept a positive attitude and faith that I would get through it and had kept a running update with my church, praising and reinforcing the importance of keeping a positive attitude and faith that I would get through it, no matter how I felt physically. Every single exam brought anxiety with it. Then in 2014, I got an abnormal PAP that showed POSSIBLE dysplasia -- the lab tech was unable to distinguish radiation-damaged tissue from dysplasia. My gyn sent me back to my head oncologist and he did a PET scan to make sure there were no more cancers and scheduled me for an in hospital out patient LEEP and laser surgery to remove all damaged tissues so testing could be more exact and they didn't keep sending me back. After the surgery, he told me that I had a LOT of damage, likely from the brachytherapy, and even he had difficulty distinguishing between the radiation damaged tissue and possible dysplasia so he removed ALL abnormal looking tissues, leaving me with virtually no mucosa. He said it was important to be able to get clear tests but that I would have bleeding from intercourse and dilation for the rest of my life. I guess mucosa doesn't grow back and the tissue left was like the second layer of your skin where the blood vessels are close to the surface and bleed easily. At that point, I honestly felt more negative than through my whole experience. I was doing well since the treatments. Little or no bleeding and no discomfort. Now, because a lab couldn't tell the difference between radiation damage and dysplasia, my vaginal tissues underwent more than was necessary to eliminate the cancer and I would have difficulty for the rest of my life. I didn't blame the doctor. He did what was necessary, but it seemed like such an unnecessary complication I didn't need to have. It was the first time my positive attitude slipped. At my post op exam they told me that dilation was even more important now and that the PET scan did show a change that wasn't related to cancer but rather radiation damage. I'd developed micro-fractures in my sacrum. Not serious but would cause back pain and accelerated arthritis. It was the beginning of realizing that although my cancer was gone and the treatments were over, I was going to have to deal with the effects for the rest of my life and some could be quality of life altering.

What was most difficult for me: The most difficult part of treatment for me was the HDR brachytherapy and as it turned out, it was also the most long term damaging. I continued and continue still to try to maintain a positive attitude and strong faith that I can do this along with feeling victorious that I BEAT IT, even if I do have to suffer with after effects forever. Perhaps that realization may actually have been the worst for me and continues to be, despite trying to stay positive.

What I did to help myself: The one thing that I did to help myself is not allow depression and negativity overwhelm me. Even at the worst, I did my best to stay positive and upbeat with a victorious outlook, while accepting that this was something I HAD to get through. I tried to keep my life as normal as possible through treatments. I never considered that my life was over as I knew it or that this wasn't something I couldn't handle and come out the other side. I stayed informed and proactive with my entire treatment protocol, asked questions, and researched for safe, natural therapeutics to help with the side effects of treatments, as I still do now with after effects. I heavily relied and continue to rely on the support of my husband, who was with me though every single phase of treatment that he was allowed to be present for and stayed strong in my faith that I was never alone.

My life after cancer: My life after cancer is blessed because I am HERE! While a good bit of it is concentrated on controlling after effects of the treatments so I CAN live as normal a life as possible, I am grateful that I am able to. Perhaps watching my son suffer with the ravages of diabetes and die so young gives me more perspective about the preciousness of life, as well as surviving something that should or could have killed me that makes me feel that I am still here for a purpose and that I will do everything I can to continue to live that life I was blessed with, despite the difficulties that often bring me down. And I will continue to dilate regularly despite the pain and bleeding, explore natural supplements and therapeutics to help with the after effects, and continue to stay current with all of my doctors and their advice while continuing to fight on my own front for the gift I was given. This website is special and celebrates all of those things I think and feel in my heart and soul through my own life experiences.

Where I am today: Today, I am 63 years old (though don't know when that happened!) and working hard to not allow the complications of the past 15 years take ANYTHING away from the many years of life ahead of me that I was given. I do struggle. But I refuse to give up. I have managed to control the digestive IBS issues and that is a major victory. My vaginal condition continues to worsen, partially from long term radiation effects and partially from age related changes, combined together. My most recent PAP came back "perfect" (to quote my GYN), though besides showing "Negative for intraepithelial lesion or malignancy" it also showed "Reactive squamous metaplasia, Inflammation, Hyperkeratosis, and Mixed Cell Pattern". The Hyperkeratosis is new and they don't even bother listing severe atrophy anymore. It just means that although my PAP was perfect in the eyes of the doctor, my vagina is deteriorating as time passes. But, again, I refuse to give up. My most recent addition to my late term side effects is cystitis, which has given me more difficulty than any of the others. The doctors have done urinalysis/urine cultures and all have come back perfect - no blood, so automatically diagnose radiation cystitis due to my history. I wonder if, this time it's just interstitial cystitis and not due to the radiation? My symptoms don't really match as well to radiation as IC. In any case, I am working with all of the various therapeutics and refuse to give up. I will LIVE this life I have been blessed with and will continue to research, try everything, and keep on living despite it all. "What doesn't kill you makes you stronger". I KNOW that's true.

What I want other women to know: I want other women to know they can DO IT! As long as there's breath there's life and as long as there's life there's hope and love. We live in an age when almost anything is possible and make no mistake, your best weapon and armor is your own attitude and faith, and taking a positive role in your own care and situation. Be proactive. Don't be afraid to ASK QUESTIONS and make suggestions or request something. You own your own health. Don't give it over without being a partner on your care team. And don't be afraid to cry if you need to or feel vulnerable once in while. That's OK, but remember, you are stronger than you realize and taking charge will help you realize that, no matter what you are dealing with.

How I will try to help others: I have spent many years trying to help others understand and keep a positive attitude to get through the difficulties we often face in life, even throughout my own. I have been thanked by many but that isn't the point. I am here for a purpose. Maybe as an example. Maybe to encourage others who need it. Maybe for my family or someone I haven't even met yet. I believe survivors have a responsibility and I spread my story freely. It's one of sadness and grief but also of positivity, faith, and triumph. Others need to know that it can be both and it's OK.

Any additional information you'd like to share: I am happy to share my story and hope it helps others in some small way. I continue to fight the battle of a CERVIVOR and always will, with hope, diligence, and dignity, continuing to search for ways to manage the after effects that you are left with once the cancer is gone and treatment ends. It's not an easy road. I'll be the first to admit that, but it is a passable one, even if it means accepting that you may have to make allowances and do things a little differently. I am CONSTANTLY in search of support groups and forums for new information I haven't tried, stories of other's struggles, and to share my own story. I appreciate this blog because I know that it can make a difference for so many.