How to rock cervical cancer
I found out that I had cervical cancer on Halloween day 2012 (trick or treat!), after having my first abnormal pap smear ever in early September the same year. I had gone for a pap every year since I started having my period. I ended up having three procedures, culminating in a hysterectomy, during which my doctors also took out seven lymph nodes but left in my ovaries. I was 35 years old when I got my diagnosis and was fortunate to have already had a baby, who was in his first year and a half of glorious life. Unfortunately, he was heavily teething the evening I found out and my then-husband was incredibly unhelpful, so I was up for six hours that night, trying to calm him down by myself. This did give me a lot of time to reflect, though: I had fucking CANCER — boo.
Regardless of the stage you’re in, or the type you have, finding out you have cancer is not much fun. If you’re me, you then feel guilty about being mad because other people have much worse cancers than you, so what’s your problem? The first thing I learned is, it’s okay to be mad that you have cancer of any kind. You have cancer! Be mad, cry, be upset. I didn’t cry until after it was all over, because I was trying to be strong for my then-husband, and now I feel a little cheated. So please cry, rage, scream, feel hurt and bad for yourself. You deserve it. This sucks. It sucks specifically for you. No matter what the effect on other people, you need to mourn your mortality and your previously-thought-good health.
I’m going to explain the process of pap to cancer based on my experience, as well as some things I feel are really wrong in the medical industry. But I feel that I rocked this in the end. Hopefully this will help someone not get cancer, or at least amuse someone who currently has it.
1. Don’t die
Early detection is the key to beating any cancer, but not all cancers are easy to detect. HPV, the precursor to cervical cancer, is detectable before you get cancer — provided that you get a pap smear regularly.
So someone gave you cancer...
HPV (Human papillomavirus) is a sexually transmitted virus. In most it cases goes away on its own, but sometimes it turns into genital warts, and sometimes it turns into cancer. So you can be happy in the knowledge that someone probably gave you cancer. In my case, I knew that my ex-husband had cheated on me, so infer what you need to from that. However, I also have PCOS (polycystic ovary syndrome), which is an insulin related hormone disorder, so it could have been a dormant strain that lay unnoticed for six-plus years, and awakened magically by additional estrogen provided by my pregnancy. But there is no way to tell. Some strains can lay dormant for years; however I could not find any specific information online of how many “years” this entails. So not only did someone give you cancer, you will never know who it was unless you have only ever slept with one person. The only way to try and not get HPV and still have sex is to always wear a condom. As condoms are not 100% effective, and HPV is incredibly contagious, you can still potentially get it. Most sexually active people today have it; or have had it. The CDC (Center for Disease Control) estimates that there are approximately 14,100,000 new HPV infections in the United States alone, each year. You actually don’t even need to have full-on intercourse to get it, you just need to have physical contact with each others genitals. Yay!
Two HPV vaccines exist that can be given out to both boys and girls before they have sex; Gardasil and Cervarix. They are free in Canada, but Canada rules, so check how much they cost in your country. A vaccine that will help your kid avoid getting cancer, or giving cancer to others? Seems like a good idea, but they haven’t been tested extensively and there are potential side effects. In theory, I love this, but I don’t know enough about it to endorse it. The CDC says, “While both vaccines protect against HPV16, which is the most common HPV type responsible for HPV associated cancers including cancers of cervix, vulva, vagina, penis, and anus and oropharynx, only one of the vaccines (Gardasil) has been tested and shown to protect against precancers of the vulva, vagina, and anus.”
Fun with q-tips
If you’ve never had a pap smear before, you’re in for a treat. A gynecologist will insert a speculum (a plastic device that looks a bit like a hollow barreled gun) into your vagina, and press the trigger, which opens it to widen your vaginal opening. Then the doctor uses a long cotton swab to take a sample of your cervical goo. It is only a little uncomfortable and takes very little time. Generally this is followed by an internal exam, which is less fun; the doctor inserts two fingers into your vagina and pushes on your abdomen. This part is to test your ovaries to see if they are enlarged and if you have any pain. Ovarian cancer is also something that is not great for you, so just suck it up and get the test every year. As not-fun as it is, cancer is less fun.
The AMA (American Medical Association) now claims that women under 21 years of age do not need to be tested. The CDC says that young people (ages 15-24) are particularly affected by HPV, accounting for half (50 percent) of all new infections, although they represent just 25 percent of the sexually experienced population. There is a long time span between when a lot of kids are having sex and 21 years of age. If not everyone is getting vaccinated, this makes no sense to me.
The AMA has also scaled down the recommended screening frequency for most women from every year, to every three years. They claim that this is the sane thing to do, as screening every year doesn’t find more cancer statistically than doing so every three years. Remember, I got a pap smear every year. In one year, my cervix not only developed abnormal cells, it got a full-on tumor. I got cancer in one year. Also, my tumor was really close to a lymph node — so close that they decided to take out seven of the lymph nodes in the area. If I had waited for three years to get my next pap, my cancer would have spread and definitely required chemotherapy and radiation. So, to the AMA, I say: fuck you. Get your pap every year ladies. Every. Fucking. Year.
Colposcopies are fun for no one
Once you have had an abnormal pap smear, your doctor will typically decide to take a biopsy to see just how far you’ve come and how deep into the tissue your HPV is situated. This procedure is called a colposcopy. At this point, you don’t have cervical cancer, and remember, HPV sometimes goes away on its own. You don’t need to panic, and really, don’t panic ever. It’s not going to help you get better and it’s a waste of your energy. During a colposcopy,the speculum is again inserted into your vagina along with a longer device meant to bite a tiny chunk out of your cervix to send to the lab. It feels like a bad period cramp. They then open your cervix, which feels a little vomit-inducing, and take another bite out of the inside of your cervix to see how widespread the issue is. The inside bite is worse than the outside bite. It’s super fast though, and will not stop you from doing anything that day. You may not want to have sex until the next day because it makes you feel generally icky, and it’s hard to get in the mood when you’ve just had the very interior of your crotch bitten medically.
Take a LEEP
When your report comes back from the lab, your doctor will let you know if they feel that this is the type of HPV that will just go away on its own or if you need further intervention. For most of you, that was it, and you can go on your merry way. But your doctor will want to see you for another pap smear earlier than a year for follow up, to see how things are progressing. Go to these.
If you are lucky like me, then they will have found abnormal cells in a very high grade (high-grade squamous intraepithelial lesions are what they call advanced precancerous cells on your cervix) on both the outside and inside of your cervix and you will need to have a LEEP procedure or cone biopsy, which are the two cell removal options that your doctor can offer. As I have no experience with the cone biopsy, I’m going to focus on the LEEP (Loop Electrosurgical Excision Procedure). A thin, low-voltage electrified wire loop is used to cut off the abnormal tissue, which they see via placing a solution on your cervix and surrounding area that identifies the bad cells. Basically, they electrocute your cervix slightly and cut some of it off. Because my cells were so high grade, and I had them on both the inside and outside, I was sedated and had my procedure in the hospital. Often, you can have this done at your doctor’s office and do not need anything other than a topical pain killer. Due to my level of cell abnormality, they also decided to do some additional biopsies on the interior of my uterus.
The pathology report
Reading a medical pathology report is painful, even if you consider yourself an otherwise smart person. Do not feel bad. Ask your doctor to explain it to you over and over until you feel you have a grasp on it. I had my doctor draw me a picture of my interior junk and we numbered the sections, which helped a lot.
My doctor (who is mad-skilled and the head of the Women’s Center at her hospital) was confused because she found abnormal cells at the top of the uterus, but none on the sides. The portion of the cervix she removed seemed to have the same level of abnormality as they had previously thought after the original biopsy. She decided to send my biopsies to the sister hospital, which had an oncology (cancer) department, and made me an appointment to meet up with a cancer specialist there to go over my pathology report. We talked about how this could mean that I might need to have another, deeper, LEEP, or potentially even a hysterectomy. But at this point, it was all just high grade abnormal cells — nothing to worry about.
On October 31, I was mad that I had to go to the oncologist (cancer specialist) because I had a one-year-old and matching dinosaur costumes. I wanted to be home dressed up, handing out candy to the neighbourhood kids. The doctor’s office was swamped because of late patients from the morning appointments who were stuck in traffic due to the Giants’ parade (they had just won the World Series). My appointment at 3pm was beginning at 5pm, and I met my newest doctor and her two interns in the exam room. I felt that she was just there to consult on a piece of paper, so I began to argue that I have had more than enough people up my snatch lately and I didn’t think I needed to have another pelvic exam to round out the experience. She told me that their lab, which was a better lab, actually found a tumor in the piece of cervix they took out in the LEEP. It was encroaching on lymphatic space and I had cancer. I had cancer. Well fuck.
I sighed deeply, asked them to leave the room so I could put on the paper gown and disrobed from the waist down, as one does in those situations. I texted my then-husband, who was asking me how much longer I’d be, that I had cancer and would be late. He replied, “Oh boo.” Then we made the plan for my hysterectomy, which was to be on December 3, at my gynecologist’s hospital. Both my gynecologist and my oncologist would be performing the surgery. As I already had a child and my cancer was stupidly efficient, we all felt this was the best thing to do.
2. Don’t suffer in silence
I have always felt that talking to people about what I’m going through is helpful. Cancer isn’t the first bad thing that’s happened to me, and I don’t think it was even the worst thing so far. It’s not going to be the last thing, either. Tell people you have cancer. Every cab driver in San Francisco knows that I had cancer. Every person who works at restaurants that I go to knows that I had cancer. You now know that I had cancer. Trust me, it really works. It might make you cry every time you talk about it, but that’s part of what makes you eventually feel better. You need to own it. You have cancer, it sucks and you’re going to fight your ass off.
People will surprise you. I had a giant outpouring of support both online and in person. My friends who had largely faded after I had my baby all came back in droves. Old co-workers, strangers, neighbours, moms on the email lists I subscribed to, all offered me help and support. The key with all of these amazing people was to take them at their words and accept their support. I hate feeling needy; it’s my least favourite feeling. I’m much more of a helper. I don’t like to need anyone to do anything for me, but this is the time to sit back, “relax,” have cancer, and let other people do things for you.
Have a going away-party for your girl parts. Seriously. I had heard about women who had breast cancer, having parties for their breasts before mastectomies, and I thought that was just great. So I had a party for my uterus. I asked all my friends to bring me a flower they thought most looked like female genitals so that I could have the bouquet in the hospital for my recovery, and I served pink foods. One friend, a gay man, said that no flower reminded him of a vagina, so he brought me a nutria skull (in lieu of the creepy-store-where-one-can-buy-animal-skulls not having a beaver). It is one of my most prized possessions.
3. Have fun with your hysterectomy
Hysterectomies suck and hurt and the recovery time is generally given as four to eight weeks. I had pain for much longer than that, but I’ll go into the recovery in a bit. The main point I want to mention here is that you’re going to need help. There’s nothing worse than feeling like crap by yourself. Having friends and family around is going to make you feel a lot better. My mom flew down before the operation and stayed for 18 days to help with my baby. I found out that my husband was unemployed and cheating on me throughout my entire recovery, so if you feel you are in a bad situation and you have no one to help you, having someone who is supposed to help you but doesn’t isn’t a picnic, either. My friends and family, on the other hand, made up for the bulk of that. Also, I got my doctor to take a photo of my uterus (as shown above), which I Instagrammed (why not?). When else will you get to have a photograph of your organs on the outside of your body? Hopefully not often.
Set up a care calendar
I set up a care calendar for people to make and drop off food for my mom, my son and me. Because my son and I have a gluten intolerance, this was additionally cumbersome, but people made amazing food for us. Moms on my email lists volunteered to come over and have play dates with my son so that he could see people from the outside world. I had a new friend over to hang out pretty much every day, and I got a lot of visitors. There are plenty of care calendar options, but the UI on most of them are terrible. I’m hoping that people make new ones, so I’m not going to link to them. But they are very handy in coordinating people to help you out.
Resuming normal activities
As I mentioned, the recovery is supposed to be four to eight weeks. I think it was about three months before I didn’t have pain, and I still get a twitch every now and again. When they say that you can resume normal activities in about two to four weeks, they must be referring to people who walk to and from their car — not so much those who carry their 23-pound toddler around strapped to their body, walk up three flights of stairs with groceries and ride a bakfiets dutch bike with a car seat bolted onto the front. Healing is going to take longer than you want. Give yourself that time. Stay in bed as much as possible, even if you are bored to tears. I did not do this and I ended up creating additional complications.
After you’ve had cervical cancer, you have to have paps every three months for the next year, moving up to every six months and then back to every year. You can always get cancer in your vagina, so look forward to that.
All the complications
I am medically lucky. I get “all the complications”. The pain medication they gave me at the hospital made me nauseous, and I vomited a lot. The other medication they gave me to replace it also made me nauseous, though I vomited a little less. The third medication made me feel a little gross, but I wasn’t puking, so we stuck with that. But it made me constipated, and I needed medication to help me poop. They almost wouldn’t let me out of the hospital until I pooped, but I wanted to see my son, so I nearly busted a gut to push one out.
The next week was an ordeal. I went on and off the pain meds because they were so unpleasant and made my head too fuzzy. Then I started to “leak” fluids. I searched online because they did not tell me that this was a potential side effect. I found that I might have a bladder cut, causing me to pee out of my vagina. Sweet. I’ve always wanted to pee out of my vagina: who wouldn’t love that? I was going through several overnight pads a day soaking straight through with this fluid. I had to go back to the doctor for a test where they put blue-dyed fluid into your bladder with a catheter and stuff a wad of cotton up your snatch. Then you have to walk around for 30 minutes and see if your crotch wad is blue. Thankfully, it was not. But still, fluid.
They figured out that I was leaking lymphatic fluids because I was over-exerting (walking around and crouching down to hang out with my son), and I had pulled some stitches. The leakage continued for about two weeks. It was disturbing. After experiencing what it felt like to be constantly wet in the crotch, I vowed to change my son’s diaper twice as often as I had previously because it is very unpleasant. Our bodies are miraculous, awesome, fascinating and gross.
Aside from not having cancer anymore, there are a few upsides to having a hysterectomy. If you got to keep your ovaries, then you don’t have to go through menopause. Congratulations! If you didn’t get to keep them, then at least you get to be done with menopause early. I got to keep mine, so I get to have the hormone surge that goes along with having a period, including the intense randiness, without the pesky cramps or geyser of blood. Since I’m going through a divorce and am not interested in dating yet, I have some battery-powered partners to help me along. But not having to take birth control pills is a big upside. There are always condoms, but if you have a partner you trust who has been STD-tested, then you are free to hump your days away, pregnancy-free. Plus, you have some new and interesting scars, and scars are hot.
4. Walk the long hard road
So you have found out that you have cervical cancer, but you are at an advanced stage and require chemotherapy and/or radiation. I was very fortunate that I did not have to go through either of those processes, but I had a friend with breast cancer who recently did, so I’ve had a bird’s eye view and have some by-stander advice to give.
My friend is tough as fuck; still she would call me and tell me to tell her that she had to go back to chemo. It is hard. Sorry. Chemo is the sort of thing that is different for everyone and for every cancer too, so it’s really difficult to tell you what to expect. Join a support group. Get a therapist. Find all the books you want to read, load up your iPad, and get ready to hunker down. Because you got this. It is a huge pile of suck, but if your physician feels that it will help you and get rid of your cancer, then the odds are in your favour. You need to do all the things you can to get well. If you live in a state or country that has medical marijuana, go for it. I’ve been told that the nausea and overall body feel of chemo is heavily improved by vaporizing marijuana. You are fighting for wellness; use the tools at your disposal, and feel good about it.
My friend thought that radiation was less awful than chemo. So if you’ve already done chemo, consider radiation your less shitty follow-up. Again, I have no personal experience with either of them, and I wish you all the strength in the world.
Facing the road less traveled
You are at a stage where they do not feel that treatment will help you. I am so, so sorry. I clearly do not have experience with a terminal diagnosis, and I can’t begin to imagine how you feel. I only know what I thought about what I would do when I was in diagnosis limbo. Eat all of the things and hug all of the people you love. If you can travel and have the funds, do all of the amazing things you ever wanted to do, and cherish all of your moments. Surround yourself with good.
I’ve had a pile of bad happen to me throughout my life, and one of the things that has always made me feel better is trying to help others not go through what I have. If you have the time or strength, this might help you too. I send you all my positive thoughts. I wish I had something better to say.
The point of all this
I knew one woman who died of cervical cancer when she was in her early 20s; a friend’s mom passed away when my friend was young; and I know of one woman currently with a terminal diagnosis. It makes me so incredibly sad that cervical cancer is preventable, but women are still dying. There are so many things out there that can kill you that you that can do nothing about. If getting a q-tip up the muff once a year can save your life, you should really just swab up already.