Living with IBC

I really hate cancer. I hate everything about it. The diagnosis itself sucks. Your life immediately turns upside down. The day I got my diagnosis my entire life changed. You look at everything in life differently.

For the first several months I was so sick I could barely get off the couch. Once past the first months, I got kicked again just not as hard. I was then able to get out more to try and put my life back together. I look at all the women who just go about their business without the cares and worries of just living and realize I no longer have that ability. I am now jealous of those women and their ability to be carefree, I miss it.

I have to be careful or concerned about what I eat, where I go and what I do. Eat these foods, not those. These can kill you, those are boring. Drink this, not that. Do this. not that. If you don't, you can have a reoccurance and have to fight all over again at a higher stage of disease.

I've had the opportunity to do some fun things since completing parts of my treatments. I do what I can, when I can. Unfortunately what use to be nothing more than vacation, or weekend activities, is now something I have to be worried about because of what other people are thinking. "Well if you are doing this, you are okay and back to normal." No, I'm not okay. I will never be normal again, ever.

I have been poisoned to near death. I have been butchered and no longer have any female parts that make a woman feel normal. I have been burned to the second degree and have the skin to prove it. I have seven new scars on my body that I have to see every day. I suffer hot flashes, fatigue, pain associated with my mastectomy and radiation, and general depression that I simply don't look like a normal woman and continue feeling sick in one way or another. These may never go away.

I am still undergoing treatment that has cumulative side effects that suck. Hand Foot Syndrome is in full blast with the bottoms of my feet and my hands hurting with simple tasks like walking or picking up a cup, itching constantly, and

drying out to the point of cracking even though I put gobs of lotion on continuously. They resemble a burn and at times feel just like that. I am fatigued, sick to my stomach, getting headaches and body aches, as well as a large loss of appetite. I am also suffering from what I believe is Vertigo since my recent MRI scan shows I have a brain, and one without cancer.

I have lost my job because of this illness. While things may not have been perfect before this diagnosis, it certainly didn't help the matter and led to a final decision to leave a job and people I had been with for 24 years. Now I sit at home and wonder what I can do to be a productive member of society, yet I am still undergoing treatment that has side effects that still prohibit me from doing normal things.

Insurance companies don't give a rats ass about me and my problems, they just want to save money. I now have a condition that if I lose my current insurance, which I eventually will, I will become a precondition patient that may prohibit me from getting good insurance, or it will cost me an arm and leg.

People see me and say "You look great". I smile and say "Thank you, I feel good". What they don't want to know, and I don't divulge, are the everyday problems that I face. I don't want to be perceived as whining therefore I keep it to myself. They are small problems, but problems nonetheless. I worry at every small sickness that comes up. I no longer can have a simple headache without worrying that I have brain cancer. I can no longer have a simple rash without being afraid it's skin cancer. My stamina remains low, until I can finally be done with all effects and get as close to normal as I can. That is reality.

I would give anything to be normal again but this is not possible. This is my new normal. I have cancer, it's not curable. I may be currently in remission, but I have cancer. I have to deal with that every day.

I realize now that life is short. The time you thought you had to do the bucket list may not be as long as you thought. It's my time to do the bucket list when I can, while I can. I hate that people say things about this, but it's what I must do. I don't want to leave this world with any regrets, or should haves. I want to live now as much as I can.

Unfortunately not everyone sees it this way. That bothers me. It bothers me for myself, and every other person that is going through a life changing illness. I said in the beginning this makes me look at things different. The simple laughter of kids in a playground, the beauty of our country, the wasted time on hatred and divisiveness. It all looks different now. And I don't like the feeling that I have to apologize.

I plan on living for a long time, I just plan on making the most of every minute. If that means travelling, being with family, volunteering, or someday returning to satisfying work, then so be it. I just sometimes wish everyone could walk in a cancer patients shoes for just a little bit. I don't wish this disease on anyone, I just wish for understanding of those of us who are going through it.

Now the positive. I am still in remission, past my one year mark. That is a big milestone. My brain is only affected by migraines, not cancer. I have signed up for, and am going through training to be a mentor with ABCD (After Breast Cancer Diagnosis). I will also be working with them on IBC actions. My union has not abandoned me yet, bless them. I'm almost halfway through my Xeloda and it's almost Spring, Praise the Lord!!

I'm off my soap box now.

These two quotes have been my mottos for as long as I can remember. They remain so today.

Life is short, Break the Rules. Forgive quickly, Kiss Slowly. Love truly. Laugh uncontrollably and never regret anything that makes you smile.

Mark Twain

and

Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!