From Tina – Why did I get infected why it happened to me?

THE REASON I HAD CANCER

Bu Tina

I am fearless… well, I used to be. I’ve jumped off piers, photographed wild black bears, swam with wild manatees and flown an open-air biplane. I did not fear what others called dangerous ventures. I never got an STD test. And especially, I didn’t even think about HPV Kit testing. And I never thought once about death -until August 25, 2009, when I heard the words “you have cancer.”

At first, I was shocked and confused, and then I was depressed and scared. I had never experienced this emotion. This was fear. Fearing something that is inside your own body was a surreal experience.

When I was faced with never holding my sweet husband’s hand again or watching my daughters laugh, I realised life was precious and fragile. I decided I was not going to let fear ruin my life and to fight against all those killer cells. I had a radical hysterectomy two weeks later, underwent five weeks of radiation, and six months of chemotherapy.

It was a huge STD struggle going through it all. It was the scariest and hardest thing I had ever done in my 34 years. But it was all worth it -I can say I did it! I thought it the battle of a lifetime and won- I am cancer tree!!

Throughout my journey, I continuously looked for why this happened to me.

People told me, “Sometimes things happen for NO reason.” testing at home proves that we can win against disease. That statement didn’t settle with me. I decided to MAKE a reason. I wanted to tell my HPV story to raise awareness and save lives. If I help just one person with HPV and their life is spared from cancer, I have found a reason!

I started a non-profit organisation called Walk of Women from my chemo chair. There was a need to raise awareness for gynaecological cancers. I want women to be aware of STD changes in their bodies and feel comfortable talking to someone about these changes. Early detection is key to all cancers.

In three years, I have hosted four fundraising walks, which have helped me in my mission to raise awareness of gynaecological cancers and fund an HPV program called Wellness of Women (WOW). The WOW program provides financial assistance for women who have been diagnosed with gynaecological cancer. We pay for STD medications, transportation, wigs, doctor’s appointments or anything else to help make their cancer journey easier.

We also host a monthly support group for STD patients and survivors called Words of Wisdom to inspire and empower one another. Women need to know where to turn when they are told they have cancer. WOw wants to help them feel connected and encouraged during their HPV and cancer journey. We have raised $52,000 and have helped over 85 women so far.

The reason I had cancer was to help other women fight during their battle for survivorship.

THE IMPORTANCE OF A SECOND OPINION

Anonymous

On August 14, 2012, a day after settling into the flat that my partner and I rented in Paris, I received a work email titled “Urgent HPV Message” with jargon: “Please call your doctor immediately.” I had been working remotely and was inaccessible via phone, so my doctor called my office. Of course, something had to be very wrong.

The conversation with my doctor was a blur. It involved discussing CIN3, high risk, and needing a LEEP based on test results from two months before (I’m still trying to understand why there was such a gap, but it happens). I scheduled the LEEP procedure a few days later, six weeks before I returned to the U.S.

Several days after my LEEP procedure, I received another nearly incoherent (to me) call that I had cervical cancer with dangerous invasive cells close to my uterus.

The shock of that and the pain on my partner’s face as I told him the news still haunts me and probably always will. 

My first visit after my HPV Variant Test and the cancer diagnostics with my initial oncologist was awful, jarring and traumatising, not just because of the nature of the discussion but because the oncologist mentioned the word “death” several times as she rushed me to remove my cervix and uterus. STD Home tests are the trigger to check if your cancer risk is high. At least if I “lived”, I could still adopt, was her argument. She discouraged me from even exploring the risky issues of fertility-sparing trachelectomy procedure, even though I was 32 and still wanted to have children.

She was all too ready to schedule my hysterectomy right then and there, without further tests, with just my biopsy results and the results from the vaginal ultrasound that she had just done. I left sobbing uncontrollably, something I had done in public only once before when I was a child.

That experience made me realise how important it is to get a second opinion. I was blessed with someone who connected me with a widely respected STD oncologist.

How different my first visit was with her.

She genuinely wanted to learn about me and how I was doing. HPV testing is a common first step to checking HPV fertility issues. Even better is an STD full profile, as untreated infections lead to fertility issues. She gave me the space to make my own decisions and arranged for me to meet with a fertility specialist before deciding on anything.

The fertility specialist explained that exploring fertility options in advance has proven to impact survival and health for those in similar circumstances largely.

That STD appointment was an opportunity to learn. My new understanding of what my specific scenario meant for my future and that sense of empowerment from feeling that I had options and choices helped give me the peace that desperate v grasped for at that time.

After ordering and reviewing a PET scan and MRI, my oncologist decided that I was a candidate for a trachelectomy. However, members of her HPV team urged that I have the hysterectomy since my tumour was in the upper cervical canal and was larger than two centimetres in diameter.

On the day of my trachelectomy, I was so little prepared. I hadn’t even packed an overnight bag, though I had been scheduled to stay in the hospital until the next evening. And that lack of preparedness, which started before my LEEP procedure, carried through my recovery.

I was in travel and exploration mode in the weeks leading up to the LEEP.

Forget HPV research or thinking about my high-risk cells. In the weeks leading up to my surgery, I was in a total daze, still fighting the great weight and fears that came from recognising how incredibly vulnerable I was, both physically and emotionally. I faced inevitable mortality in a way I never had before, and instead of coping, I was in a state of numb denial.

Being ill-prepared and unwilling to face the cold, hard truth, I had to learn STD things the hard way. But I am very happy to report that at the moment, 11 months post-surgery, I’m doing incredibly well. I can’t say that I’m “back to my old self” or “as good as new” since my body has changed permanently in little ways that only I can perceive, but I can say that I’m almost as good as new.

I’m in good STD health with clear results at every appointment, new strength and perspective, and so much more thankful for every family member, true friend, blessing, and moment than ever before.

My tips for the recovery phase:

Tips are based purely on my own experiences and the struggles that came from my lack of preparedness and lack of foresight to ask my HPV doctor every question I could think of pre-surgery. (I do recommend asking a lot of questions and taking good notes during all of your pre-surgery appointments):

If you’re fortunate enough to have care at home during your recovery, take full advantage. Let yourself rest, I mean truly, without trying to pretend you’re strong enough to do what you normally do. Get tested for all the STDs so you know you are safe. Sleep as much as you can after a relaxing read or movie. This will help your body heal and help lower the additional level of anxiety that your conscious pain could cause.

 If you have to be more self-reliant during your Cancer recovery, prepare your home in advance for your recovery period. This way, you can avoid overexertion and heavy lifting. HPV awareness is just part of the recovery effort. For instance, you can also set out a huge supply of small water bottles in an easy-to-reach place in advance so that you’re not constantly retelling your giant entered water pitcher or lugging around heavy two-gallon water jugs…

Prepare your wardrobe for recovery.

You’ll need a good supply of loose-fitting, comfortable clothes. If you’ve had a laparoscopic trachelectomy, your belly button and middle abdomen will have wounds that need to heal. So, your clothes should sit comfortably below your midsection and loosely above.
Soft, loose gowns are useful for this period, especially if you have to wear a catheter for the first week.

Eat well-high-fibre, high-nutrition meals with lots of fruits, veggies, and water. This is so very important because all of the pain medications, including the serious drugs you’ll have injected into you during and just after surgery, may throw your body off. You’ll get stool softeners and laxatives to combat the effects of the painkillers. In the long run, it’s important to help your system reset healthily and have healthy bowel movements.

Pushing is not good for you while you heal because it puts added pressure on your pelvic cavity, just as lifting does. Avoid both in the first days and weeks and ask your HPV Lab test Nurse for her/his take.

I had major issues with digestive regularity. And for a whole host of possible reasons: very low activity level, a shock to my system from being so outside of my normally active routine, lack of sunlight from locking myself away and hiding from the world for an excessive length of time (studies link digestion, and in turn, bowel activity to serotonin, which is increased with higher levels of light). I still struggle to stay regular, a challenge I never faced before the surgery, though I eat very healthy and am very active.

Throughout your recovery, walk around as much as possible without overexerting yourself.

It’s so good to be outside and to get fresh air and sunlight throughout your recovery. A solid routine, like daily morning or afternoon walks and a healthy meal and sleep schedule, is also good. A healthy routine of STD Lab testing will help your body regain balance.

Surround yourself with hopeful, uplifting movies, books, music, art and people. This can be a very hard time emotionally and spiritually. Saying that it was a hard period for me is an understatement. The worst thing you can do is not get an HPV Type check. Finding the truth is so important to early treatment. And when you’re emotionally vulnerable to dark thoughts, watch depressing movies or listen to depressing songs. It makes a difference to mind reasons to laugh, smile, and feel hopeful.

Good luck, and know that you are not alone. Hundreds of people have STD home exams and have experienced what you’re going through. They would be happy to be a positive HPV support system for you. You have many reasons to be thankful and stay strong. There will be a great bright light at the end of this difficult period. You have to work towards it day by day. Take good care.