Elusive

“Be yourself”, they say

But, what do they really know, anyway?

Throw away quotes and Facebook dreams

Today, nothing is quite as it seems

Myself is someone I’ve never gotten to know

Since He left it’s all been for show

Like a shape shifting fairy, I learned long ago

Give them what they want and you will never be alone

At this point, the real “me” is is elusive

Shadows shrinking as the sun fully sets

I think I’m a good person but, I will hedge my bets

I am a product of all seen fit to put upon me

My scars are souvenirs to harass and enrage

My body a road map of too much pain

When the end comes for me

When that darkness fills my brain

Will I finally know

Why I’m forever stuck in the rain?

Photo credit: Gina Stacknick

The Ultimate Betrayal – and the Whole Sordid Tale

Betrayal can come in many forms. You can be betrayed by loved ones; your family, friends, lovers. You can be betrayed by co-workers, bosses, and big corporations that your work your ass off for only to be downsized after thirty years.

Betrayal stings, it hurts right at the core of your heart. Unfortunately, it sometimes starts when we are very young. An infant can be betrayed by his or her parents. They can be distant and uncaring, they can abandon you physically. Some babies are betrayed before they are even born. Their mothers drink, smoke, do drugs, leading the babies to be born addicted to heroin, crack, opiates, take your pick. These babies often have to detox as soon as they enter this world. This is excruciatingly painful and nearly impossible to watch. Some babies are born with fetal alcohol syndrome, the effects of which can last for years, if not forever.

For me, however, and unfortunately I know many who can relate, the biggest betrayal of all came from my own body. I sometimes look at pictures of me before the betrayal occurred and, I think, how did this happen? Why in the world did this have to happen? Why me? Although, logically I know why not me? My body, although not perfect by any means, was working perfectly fine for me. There was nothing insidious lurking inside me, growing, and looking to take me out.

My mother, inadvertently, saved my life. Because she had breast cancer before me, I didn’t blow off the lump I felt while sticking my boob back into my nursing bra after breast feeding little Jack. If she hadn’t had breast cancer, I most likely would have assumed I had a clogged milk duct- very common in nursing women. I was also only thirty one years old. At that time, (although the statistics may have changed by now), only ten percent of breast cancer occurred in women in their thirties. For that reason, no one but my husband and my mother were particularly concerned. Because of my history, however, I wasted no time. I was at my gynecologist’s office that Monday morning (I had found the lump on a Saturday afternoon – Father’s Day weekend, actually). After the visit Monday, I remember my gynecologist telling my husband that although he was not a betting man, he would put his money on the fact that is was nothing to worry about. The sonogram was scheduled for the next day (just in case) but, I slept a little easier that night.Unfortunately, the sonogram didn’t go well. It was at that point that, although the rest of my loved ones held out hope, I knew deep down inside that I had breast cancer.

The rest is history. Lumpectomies, mastectomies, chemotherapy, radiation, Lupron, hormonal therapy (which I am still on, by the way, and says right on the bottle “may cause death”). The scans; CT scans, MRI scans, Muga scans of the heart . Thinking of my innocent little babies, I did everything I could to get the lowest possible chance of recurrence I could.

Betrayal of my body number 1: Breast Cancer

Then, on to the happy part – or so I thought. I had planned to put off the reconstruction for a year since my doctor advised me that he would have a better chance of examining me for new lumps on the chest wall (which is where a large majority of year one and two recurrences occur) if I didn’t have implants in the way. Believe me, this was a difficult decision for someone in their early thirties but, I sucked up my vanity and did what was recommended. I then ended up putting it off for another year because my mother was diagnosed with Stage IV breast cancer just as I was about to start. Although many of you already know what happened next, I’ll recap for those who are new here.

The reconstruction was a total bust. Because the radiation I had damaged my skin so badly, I had to opt for a very intricate procedure called a tram flap. Basically, this is where they take tissue from another part of your body (mine was my stomach) and create a new breast using that. It entails moving blood vessels around to provide blood flow to the new organ (my new left breast) and then, because of the effect of all of this on the stomach muscles, putting in a mesh screen to basically hold all of your organs inside so that they don’t herniate. The surgery was over ten hours long and I needed a blood transfusion after it.

Unfortunately, I came down with a terrible infection, causing the new breast and the donor site (my stomach) to develop huge hole. In the stomach hole, you could literally drop four complete golf balls in and wouldn’t be able to see them unless you got up and looked down inside. I was in a lot of pain and, obviously, terrified to lose a THIRD breast. I came home with a low grade fever and had it for six weeks. Sometimes is would stay low and sometimes it would spike. There also started to be a horrible smell. One of the saddest moments I can remember during this time is that my son Michael didn’t want to sit next to me because of it. When we would call the doctor and tell him that something was wrong, he would call in an antibiotic to the drug store but, because the area was never swabbed, the correct antibiotic was never prescribed.

Although Al tried tirelessly to get me to go to the hospital, I refused. In hindsight, that was a very stupid move on my part. At the time, however, I was scared to death (as well as delirious from fever and from sitting up in a chair for six weeks straight). My feeling was that since the doctor was aware of what was going on from our phone calls and follow up visits, I should trust him and I would get well. It was only when I got so ill (developing sepsis) that I finally allowed him to get me in the car to get help – but even then I insisted that we go to the doctor who did my cancer surgeries and not to the hospital.

When we got there, I was debrided without so much as local anesthetic. Local anesthetic can make the area swell and blanch, making it difficult for the doctor to ensure he is getting all of the infection out. Debridement, for those of you who don’t know, is when a scalpel is used to scrape out all of the dead tissue (necrosis) that was present in all of the holes in my body. By that time, there were many. The pain was so severe that I had an out of body experience. I remember the nurse holding one hand and smoothing my hair and Al holding the other hand and it was as if I was outside of my body looking down at the whole thing. The first debridement session took a little over four hours.

The areas were finally swabbed and, sure enough, not only was staph detected by eleven other types of bacteria, as well. I had twelve infections coursing through my body, that had already reached my bloodstream. I was put on a heavy dose of antibiotics (think elephant pills) and the debridement sessions went on for months. First three times a week, then two, then once, until finally nice, healthy pink tissue began to grow from the bottom of the holes and upward. Eventually, they all closed. At the same time, a visiting nurse would come to my house twice a day to take my vitals, swab the wounds and put some sort of ointment on them.

It was a few months later that, after a big birthday party for Jack at my house, I came down with a 104 degree fever and a rash over my entire trunk, from front to back. It was time for more scans, CTs, MRIs, Gallium scans, bloodwork. It turns out that although all eleven of the other bacteria had been obliterated, I was left with a recurrent staph infection. This infection can, and often does, “pop up” anytime I get very run down, stressed, etc. In addition, I had developed a hernia because during the tram flap operation, the mesh was not pulled down far enough.

So, more surgeries. First, to identify obvious abscesses of infection and remove them and to also fix the hernia. I was bedridden for weeks at a time – no driving, no lifting, all that jazz.

Finally, when all obvious pockets of staph had been identified and removed, I could begin the arduous process of “fixing” the botched reconstruction. All in all, between the original cancer surgeries, the surgeries to remove the staph abscesses and the final reconstructions surgeries (including a latissimus flap surgery that took over twelve hours), I ended up having twenty surgeries in ten years. I look at this as I type it and still can’t believe it happened. I did it, with two small children at home and while running a small business.

Unfortunately, the Gallium scan I mentioned earlier had shown infection all over my body, and not all of it isolated nicely into pockets that could be removed surgically. This is a condition I will have to live with for the rest of my life. Thank God I have wonderful doctors who are all in sync and familiar with my huge medical chart. I also thank God that I respond very well to the oral antibiotics (knock wood – everyone, now, please!) I have been asked before why don’t I get an IV pick to try and knock out the infection for once and for all with IV antibiotics and the answer is quite simple. All of the lymph nodes in my left arm were removed during the initial cancer surgery and half of them were removed from the right arm. This puts me at a very high risk for lymphedema, which causes your arms to swell (sometimes to the size of elephant limbs) and is very, very painful. It is also not curable. Once you have it, you get to keep it for life.

One of the most shocking and devastating moments for me during this time was when I had to bring some records from my breast surgeon to my new plastic surgeon. Foolishly, I scanned through them. Imagine my horror when I read the words (and I’m paraphrasing here) “If the patient had not come in to begin the debridement process when she did, it is likely she would have expired within twenty four hours”. That’s what sepsis does – it kills you.

Betrayal of my body number 2: Failed Reconstruction

Betrayal of my body number 3: Infection and Sepsis

My last surgery was over 2 years ago. I was finally getting to a place where I was settling in to what my new “normal” would be. Sure, the infection can rear it’s ugly head at any time but, I am pretty careful about not overdoing it and I have those trusty antibiotics.

I was so excited, also, that I had graduated to going to the oncologist every nine months (first it was all the time, then every three months, then, every six). I went in June and, although my tumor markers were all perfect (as they always are – knock wood again – God, I’m Italian!), I had pretty severe iron deficiency anemia. That explained my lack of energy and constant “not feeling quite right” that I just chalked up to some work stress. Because of my history, of course, I was sent for more tests and put on an iron regiment.

I found a doctor that I love (thanks, Jill) and scheduled an upper endoscopy and a colonoscopy – the loss of blood had to be coming from somewhere. I woke up after the procedure and was told that I had SIX polyps in my colon, which is very unusual for someone my age. All of them were completely removed. According to the doctor’s report, four of the larger ones looked to be precancerous and the two smaller ones appeared benign.

The doctor called a few days later and let me know that, in fact, all six of them were precancerous but, luckily low grade. That’s a good thing. Because of the circumstances; the number that they found and my age, it is likely a genetic mutation. So, I will now have to have this test done once a year and my close family members will have to start having this test much earlier than the standard 50 years old. When I told the doctor that no one else in my family had any history of colon cancer, he replied that a mutation always has to start somewhere. Also, just because my birth father and mother didn’t get the disease doesn’t mean they didn’t have the mutation.

Body betrayal number 4: Predisposition for colon cancer

It’s not easy to put into words how I feel about this last bit of news. I know I should be grateful that I had a symptom that forced me to have the test that most likely saved my life. If I had waited until 50 to have the colonoscopy, it most surely would have turned into full blown cancer by then. It’s probable that now, I will never develop colon cancer because I will be watched so closely. Neither will my close family members. I do, however, feel angry, guilty and afraid.

Angry because well, enough is enough, no?? Guilty because it appears that somewhere something in my family’s DNA mutated, causing this predisposition. I feel bad that my loved ones have to worry about developing this disease and have to have the dreaded colonoscopy earlier and more frequently than normal. Terrified because, at this point, I just don’t trust my body. I’m constantly worrying what else could be brewing and will it be caught in time.

Thankfully, all of the genetic testing that I have done for the breast cancer has been negative (and I’ve done a lot of genetic testing – as soon as new genes are discovered, I’m there with my arm out for a blood draw). I think, though, that pretty much all of the doctors agree that the reason my mom and I got it is because of the hormones my mother had to take to not miscarry me – that’s a long story – but, my sisters are still watched very closely, just in case.

Knowing the guilt I feel now (whether it’s logical or not), it breaks my heart to think of how my mother must have felt when I was diagnosed. Of course, when she was taking those hormones, they didn’t know that they caused cancer. And, if she hadn’t taken them, I wouldn’t be here but, STILL, unless you are a mother or father or anyone else in a family that inadvertently did something that negatively affected others that you love, the guilt is a very hard concept to understand.

So, I am sorry that this post is so long, is not “uplifting” or “inspiring” but, I felt that it was important. Important for my faithful readers to know the whole story (or as much of it as I can remember, to be honest), important for those of you with a BRACA or some other mutation to know that feeling guilty, although not logical, is normal.

A lovely friend of mine just lost her daughter to a brain tumor. She was in her early forties. She was treated for leukemia (which she beat!) when she was just a small child and it turns out that the chemotherapy that they gave her to save her life has been found to cause brain tumors later on. Should my friend feel guilty that she let her daughter have that chemotherapy? Of course not! Does she feel guilty? It’s entirely possible.

Lastly, I felt that this blog was important because I have learned so much during this very difficult period in my life and I’d like to share it with you. Hopefully, something here can help someone, even one person.

 If you feel anything unusual ( a lump, a bump ), go to the doctor right away. Usually, these things turn out to be nothing but, if it is something and you don’t go, the consequences could be deadly

 Listen to your loved ones when it comes to your health and don’t be stubborn like I was. My family was able to see and understand things I couldn’t because of my sickness and fear

 If you have any unexplained weight gain, weight loss, change in anxiety level, change in energy level, go to the doctor right away. If I had gone to the doctor in the months leading up to the oncologists appointment when I was not feeling “myself”, we might have caught the polyps before they even turned precancerous

 Face your fears! I was terrified going into that colonoscopy, after all I’ve been through but, I did it. If I hadn’t, who knows? Precancerous growths eventually turn into cancer. The colon is right by the liver – I shudder to think of what could have been

 Lean on your friends and family. Tell them you need to talk and that you need their prayers. They will be there for you. If not, you need to reevaluate who you have in your life. I could never have survived all of these years without my loved ones.

On that note, please remember me in your prayers. A good one would be (and this is just a suggestion) that he makes my body once more my friend instead of my betrayer.

Thanks for listening, be well and may God Bless you all with good health, love and happiness.

xoxoxox