Have you ever imagined your funeral? I have… and I think every cancer survivor has too. You see it could be a reality for us sooner rather than later. I’ve thought about colors (no black please), music; By Your Side – Sade, Here Comes the Sun – The Beatles, Beautiful Boy – John Lennon dedicated to my boys and Time Of Your Life – Green Day. Oh and I want everyone to do a little jig as they are leaving to the final song; Last Dance – Donna Summer. I want people to go home and remember one funny moment we shared rather than feel sad we won’t share more memories.
Soon after my treatment was complete and the doctor visits slowed, I tried to quickly get back into the groove of my old life to put the Big ‘C’ behind me. Even though I was looking ‘normal’, things were very different. Physically, things I could do without a problem before, were now a struggle. I now tire very easily (which could be a combination of the medication I take daily OR the fact I’m getting old… let’s face it 🙂 ). I have no chest strength to lift weights, and my ability to do push-ups is non-existent. The frustration of these challenges is another constant reminder of what cancer has done to you.
One of the worst side effects of cancer can be the financial worry. Doctors and treatments are expensive and time consuming, many are not in-network, and you spend hours and hours on the phone with your health-care provider trying to navigate your plan to get treatments and medications covered. Most drugs are covered by insurance if you are fortunate enough to have it, but others are considered experimental, and have to be pre-approved. Navigating this is stressful, upsetting, and the financial obligation can be downright worrying. Couple that with having to unexpectedly fight for your life, and you quickly want to throw your hands in the air in frustration and anger, having to deal with this in the first place.
Most facilities, hospitals, doctor’s and treatment clinics will work with you to help pay what your insurance doesn’t pay, but you have to work through the frustrating insurance company process first.
“I know I have cancer, but I’m not sure if it’s the kind where I’m dead in a month… if it’s the gnarly kind, you’d better not wallow in grief, but marry someone fabulous so that my boys have a mommy.” These were the exact words I spoke to Hot Hubby as we were driving to get my biopsy results. And I totally meant them. I’ve thought about this a lot. He can have a 6 month grieving period, but after that, I will be counting on friends to pull him out of his shell, tell him to shave, perhaps help him buy some new fashionable clothes, and dare I say it, even encourage him to date (I promise I won’t walk through walls and haunt you if you do this, you have my word). It’s so weird to even think about, but I honestly would want my boys and Hot Hubby to move onto their next chapter if it somehow didn’t involve me. Buuuuttt I’m happy and grateful to be here bossing everyone around for as long as I’m given on this planet!
For the past two years, I’ve been slowly trying to rebuild my body with the help of my rock star reconstructive surgeon. Rebuilding breasts is not easy, and certainly not the ‘free boob job’ that some well-meaning people told me was the silver lining to cancer (for real, can’t make this up, and for the record is NOT something you should ever say to someone diagnosed with breast cancer).
The reality is my new boobs are two fatty mounds that refuse to move even when I run without a bra, and feel neither pain nor pleasure. They don’t quite look or act like natural breasts, but in clothes they look normal-ish I guess. Then there are the scars… on your breasts, your stomach, legs (if your surgeon needs to borrow tissue to reconstruct). And let’s not forget the itchiness on the scars and the rippling because the skin is so thin on your chest area due to all tissue and muscle being removed. The scars all over my body from the many surgeries are a constant reminder of the cancer that tried to kill me.
I no longer have control over my body and emotions. The chemicals that I take on a daily basis are totally running this ship… some days I barely feel them, and other days I don’t even know who this bat-shit-crazy person is. None of this is deliberate. Please don’t take it personally, and please forgive me. I’d love to not take the drugs, but you see, the cruel irony of this is those same chemicals that sometimes turn me bat-shit-crazy, are the same chemicals that are supposed to keep me alive. Cool.
Doctors have always assumed the benefits outweigh the risks for CT and PET scans, but a single CT scan subjects the human body to between 150 and 1,100 times the radiation of a conventional x-ray, or around a year’s worth of exposure to radiation from both natural and artificial sources in the environment. Why is this a big deal? Because the radiation in that CT scan to help treat cancer, can increase your risk of a future cancer. So you find yourself in a bizarre catch 22. The upside….I’m alive! I will gladly trade the possibility of having a recurrence of cancer at some future point in my life for the privilege of being alive right now.
The worry of cancer will never leave you. After a cancer diagnosis and you complete all possible treatments, you get as close to your magical ‘rate of recurrence’ number as possible. This could be 10%, 15% or 50%, and that number is seared into your brain like a tattoo. Each time you have an unusual pain you instantly worry about the possibility of a recurrence. Most people will say, “my head hurts”. We think, what kind of cancer makes your head hurt? Most people might sit with pain for a while and let it pass. A cancer survivor will sit with it for a while, but eventually go to the doctor or ER because we just can’t take that chance. If we don’t get it checked and it is something, it might have spread too far.
For many cancer survivors, worry is the final gift from cancer. The only difference from one person to the next is how well you learn to cope with it. I try to tell myself I shouldn’t worry about anything until I actually have something to worry about, and admittedly, some days are harder than others.
Pretty much all types of cancer leave lasting side effects. Some of them are temporary, and others remind you of cancer every day. These side effects range from simple tingling in your fingers or feet, hot flashes, your jagged scars, or hormonal moods caused by the various medications that are supposed to keep you alive. Then there are the side effects that remind us we’re not who we used to be. We’re not as sharp as we used to be, we forget things, we ask the same questions, and this makes certain parts of our daily life suck.
Even the strongest cancer survivors will experience a feeling, a fear, and sometimes an overwhelming anxiety that hits us when we are waiting for the results of a scan or blood test. You can have all of your emotions in check, with no worries, and then BAM, going in for your routine checkup can open up the floodgates of your worst fears. Again, a never ending reminder that you had cancer, and possibly could again.
The treatments may be over, the surgeries may be over, but cancer is never over. Going to regular doctor appointment’s, it’s always in the back of your mind…is this the day my life changes? What are these pains in my back? When will my scars become less prominent? Why have I had a headache for two days? Is my bloodwork going to be normal today? These and other questions are on your mind every day.
You might be done with cancer, but cancer is NEVER done with you.
What do you find the most difficult about dealing with cancer in your life? Please share in the comments below.
I’m a travel and health writer, digital and brand consultant, breast cancer survivor, and supermom to two active boys! I keep it real and share stories of raising teenage boys, family life after a cancer diagnosis, and family travels around the world! Each story is shared with my dry, and sometimes naughty sense of humor.