Heatherina

When in rains… it pours

Today, I want to give up.

It’s too much. The pain and the nausea. Almost enough to check myself into the hospital. And if it weren’t for my own cowardice, I may be there right now.

But J is gone. The weekend I need him the most. I don’t think my head was clear enough to go through the process of calling a cab, getting the hospital, paying the cabbie, and getting through admissions.

I feel paralyzed. I can barely stand. There is no position that provides relief. I don’t know what to do anymore. I feel like I need someone standing over me watching me constantly. I feel the smallest of small right now. How did I even get to being an adult?

It’s been a rough week. Progressively more and more pain, more and more weakness. My oncologist believes it’s from the withdrawal of Prednisone. My gastroenterologist desperately wants to get me off of it, he thinks perhaps it is from the Fentanyl. They both seem to be in agreement that I shouldn’t be coming down off of both at the same time.

And then the final blow… a mixed blessing most people say. But a devastation for me. The test results are in… the pre-existing tumors have shrunk. However, the folfox hasn’t stopped the cancer from metastasizing (spreading). My lungs, my lymph nodes, different parts of my spine, and my liver. So the results are mixed. My life will now be spend seeing different doctors and having them conference about my health, which if it continues to decline, I will be in hospital.

But I’m devastated because it is looking like any treatment from this point on will be more difficult on my body. And the folfox hasn’t been a walk in the park. Right now the focus seems to be on folfiri http://en.wikipedia.org/wiki/FOLFIRI and avastin http://en.wikipedia.org/wiki/Avastin - both of which would aggravate my Crohn’s/UC. It seems from this point on I have to choose… there will be no happy medium.

I can’t tell you how difficult it is to stay strong and think positively when you feel awful. And then you get bad news… which everyone seems to be taking alot better than I am. And on top of everything… Jesse is away. My pillar that I lean on when the news is too much. Instead I’m calling in favors from everyone I know.

My cell phone, the couch, a Bible and a table full of medicine… that’s all I’ve got.

Oh… and a LOT of discomfort.

Aches, pains, fears, and frustrations

1. I can’t sit because I feel like may entire back near my tailbone is bruised. This also makes walking difficult and painful.

2. My right shoulder is frozen. I can’t raise my arm past 90 degrees.

3. I have progressive eyeglasses now. Meaning that I need a different prescription for all angles of vision. Or basically that my eyes suck. The doctor says it’s a birth defect. Awesome. But my new glasses have to be worn in stages. Adding an hour on everyday. Right now they make me dizzy. Just what I need… another thing to make walking more difficult.

4. Close your eyes boys this is an icky girl one. I have been spotting with cramps for the past 3 weeks. My regular OB quit, so I went to see the woman they have in the interim. A midwife. She recommended quitting birth control and getting an IUD http://en.wikipedia.org/wiki/IUD. WHAT?! That makes no sense. I don’t know how that would help anything. My doctors are trying to lessen my period so I lose as little blood as possible because my body just began producing blood on its own again. I’m not on birth control for the anti-pregnancy effect, I’m on it because I have cancer and the doctors would prefer that my period be as painless an experience as possible.

5. Maybe I’m going through menopause. My mother has done her best to assuage this fear, but it will always be in the back of my head. There is very little research into what this chemo does to fertility because it so rarely affects people my age. Granted, I haven’t found many people who have gone into menopause because of it. I have read about some people going on to have children, and some people having fertility issues. But no one really knows if it is from the chemo; perhaps they would have had fertility issues anyway.

6. Tied to 4 and 5, I’m afraid I’ll never have children. I’m a mother to everyone… it’s my nickname to most of my friends…Momma. It’s inherent to my character. I don’t want to sacrifice another dream to this disease. And that’s what it is really because I wouldn’t care if I had to adopt. It’s just I’ve given so much of my life to cancer… I’m desperate to hold on to the future.

7. Jesse’s leaving tomorrow morning. 5 days he’ll be gone from me. The less I think about it, the better. I hate asking for favors, and I despise being babysat. None of my friends make it feel that way, but that’s what it is. With Jess I take alot for granted because he just knows. I hardly need to ask. There is so much unspoken communication. And so much trust. It gets more complicated with other people. I have to verbalize my needs, ask for help. Swallow my pride. Ick. I don’t want to think about him leaving.

8. It’s a chemo week. Also the week where I may possibly be getting the results of the much feared tests of last week. 3 CTs and an MRI. And Jesse won’t be there. I’ll have support of course, Anna has agreed to be my co-pilot this week, but if it’s bad news I don’t know what I’ll do. Go home and eat myself into a coma probably.

9. Eating- it gives me a headache. This is something no one has been able to figure out. Why should eating give me such a headache? Maybe it’s my teeth. But I really would rather not go to the dentist. Most people know of my oral phobias (mainly that I vomit whenever I go to the dentist… so anything mouth-related makes me want to vomit, including people brushing their teeth in front of me) so they could see why I don’t want to put myself through that.

10. Fentanyl withdrawal. Absolutely killing me. I have no desire to become a narcotics addict. But as they reduce the dosage, the pain is slowly returning. I remember the pain of the last trip to the hospital and I am in complete terror at the thought of it returning. Less fentanyl, more dilaudid, more pain, and less mobility. Also an increased dependence on Jess which frustrates both of us… but mostly me. I hate not having my own freedom.

12. The desire to be a vampire. This is a silly one. I read the Twilight series for Halloween and it was so romanticised that I almost wanted it. I mean think about it… being undead…no need for sleep, no pain, no hunger, no disease; just immortality. Almost a bit like heaven on earth. Besides the bloodlust and all that. I know it’s laughable… it makes me laugh right now that I would ever consider something so silly. If you haven’t read the books… I suggest you do… especially if you need an escape.

13. Headaches in general… especially in the back of my head and neck. They never seem to go away… never really respond to medicine. There is always a dull aching that’s just enough to be irritating.

14. Pills. I hate being tied to them. I hate that I have to take so many and keep watching the clock. My patches are so much easier. I wish all medicine was adminstered trans-dermally.

15. Scar pain. I wonder if that means Voldemort is close by. (it’s a Harry Potter reference) My scar from my colectomy has begun to hurt. I don’t know if that’s normal, but I’m going to see my surgeon next week anyway.

16. The fear the I keep buried deep down inside. What if I beat this now only for it to sneak up and kill me in 10 years. Maybe if I had this at a normal age, sometime over 50, I wouldn’t worry so much. If I were to have this at 65, well, I’ve already really lived a lifetime. I wouldn’t worry so much about it coming back at 75. Not to be harsh, but really… how much time would I have left? At least that’s how I imagine I’d look at it. But in 10 years I’ll be 34. Still young. Hopefully with young children. Will I be able to fight it off again? I will never be free of this… that I can acknowledge… almost accept. But going through this again… I don’t know that I have that kind of strength. I think it’s almost easier to go through this blind. If I knew the challenges ahead of me… would I be as willing to take them on?

And there it is. My aches and pains. My fears and frustrations. A comprehensive list of everything currently agitating me. You may not have asked, but you got it anyway.

A balancing act

I suppose everyone struggles with the work/life balance. Although, I expect that their struggles are somewhat different than mine.

I remember being a temp, working for Goldman Sachs. For their new Managing Directors, they used to have conferences dedicated to the work/life balance because they were known to spend so much time in the office away from their families. Apparently their work environment is so competitive that it is necessary for them to hold seminars to teach them how to spend time with their families and say “no” to work commitments. They used to give them test scenarios to see if they would make the “right” choice- the “right” choice being their family. Ninety percent chose wrong every time.

My life right now is focused around cancer. I’d say 70% is spent laying around letting my body fight, feeling utterly useless, but knowing that resting is the best thing for me and 30% trying to actively fight by not letting it let me waste away. And then there is work. I feel so very far removed from the fight right now in a way, and in another way I am battling on the front lines.

I’m not as emotionally stable as I am used to being. Hormones, medicines, and new worries have made me much more shakable than I’m used to. I’m certainly not used to crying at the drop of a hat. At least before the cancer I could make it into a room where I was alone. Now I feel like a leaky faucet… springing to life at the slightest provocation.

I’ve been doing a lot of reading… research for work. Not out of obligation… just personal curiosity. Morbid curiosity, I guess you could say. I suppose it’s somewhat masochistic to be reading a book by a woman who I know died of Ovarian Cancer. But honestly, that book is inspirational and I truly enjoy it. And I’m learning a lot. The book that was supposed to be uplifting is the one that surprisingly had me in tears tonight… the prompt for this blog.

I was reading of compilation of survival stories… women who had survived Ovarian Cancer. At all stages, ages, and against all the bleak odds. So, I decided to do some research into the author and the book itself, only to find that the author of this book… a book of survivorship… had died herself of Ovarian Cancer.

As I read the words on the screen I almost didn’t understand them. I had to read it again to process them. I felt my head starting to spin and I felt vomit start to rise in the back of my throat. I thought I was going to be sick. This woman… who had clearly worked so hard in her creation of a diverse collection of stories of hope against such a deadly disease with such terrible odds… had herself lost the fight. It just made it so much more tangible… so much more real. I suddenly felt fragile… like I was going to break.

I suppose a part of me did break… I ran to the bathroom unable to breathe. Afraid that I might vomit… only to choke on sobs. I suppose I’m somewhat more of a robot emotionally than I give myself credit for because I delve into cancer statistics and research and my work so willingly. When I first got sick no one gave me odds or percentages… and I didn’t ask for them. Nor did I go looking. The one piece of advice I actually followed was not to look up information about the disease… just look for support. After all, everyone is different and I was the exception, not the rule. Normal standards didn’t apply to me. But I suppose I’m a masochist because eventually I looked at the stats. They still haunt me.

I had an almost better chance of winning the lottery or getting struck by lightning than being afflicted with this type of cancer. And my chances of defeating it before it consumed me were almost as small. It was shocking and horrifying… although not altogether surprising given everyone’s reaction. I was just so swept up in the whirlwind of new information and trying to process everything that I never had even really considered the odds. But it was clear to me when I saw them that all of my doctors had.

There are some days when I feel guilty because I can’t face work. It’s not the work I can’t face… it’s the cancer. Because there are days when I need to be free. I need to hide under the covers and never hear the “c” word. Days when even thoughts of my support group are enough to cause a panic attack. I was always grateful to have work as a distraction… but I wonder if maybe I’ve gone a bit too far. Perhaps I should reign myself in a bit.

Knowledge may be power, but ignorance is bliss. There are some things that I just don’t need to know right now. I acknowledge that there are some things I shouldn’t face. It’s healthier to stay optimistic, surround myself with the positive. And although the negative exists… in staggering amounts… it’s best to ignore it for my own good.

I just need to find that balance between my work and my fight. I know I can’t let myself get too involved… not just because I’m not quite stable enough for a large amount of responsibility… but just for my own emotional health. It was difficult sometimes working with such a deadly cancer before cancer had ever really touched my life. Now that I’m battling against it, I guess I’m realizing that maybe I should stick to the less involved parts of my work. Although they don’t seem as significant… at least I don’t have to stare down death.

I realize that I’m fragile… breakable. I live my life on the edge of knife and I don’t dare falter.

Balance is the key… that elusive concept that I’m constantly struggling to achieve.

Talk to me

Happy Halloween

It just seems sardonic that the very place that you go to get well can also be the place to cause sickness.

Enough being cryptic… the essence of the message is that I caught a cold from being in the hospital. I can’t blame the hospital entirely… it was probably also due to the weather. I was smart enough to bring a mask to cover my face while I was in the waiting room of the doctor’s office, I just never thought to wear one at the hospital.

Why would you? I mean the hospital is where sick people go to get well… but that’s entirely the problem. I allowed myself to be surrounded by sick people when I am most vulnerable to being sick.

It’s not that bad. I’m just a baby. I’m tucked up in bed under the warmest blanket we have, which we affectionately refer to as “the bear” because it is like sleeping under a giant furry stuffed animal. Sniffles, achiness, a sore throat, mild fever, and just the general malaise that comes from being sick.

Halloween just isn’t my holiday apparently.

But I didn’t actually begin this as a way to whine online. Just a general health update. I have a cold. No one likes having a cold. And I am particularly a baby about colds.

What I really was wondering is how is it possible to be so lonely in a house full of people? Do I have some sort of insane abandonment complex? Where would I have gotten that from? I still have both of my parents, who are still married, and call daily. My family has only pulled closer together in recent months.

I think I very much annoy Jesse. I’m constantly invading his space and pleading with him to sit with me. None of which he understands because in his mind we are ALWAYS together. He craves time alone. I dread it. Even when I’m not really alone, just in a different room.

Where did this come from… this need to always be around other people? I can’t imagine what life will be like someday when we have a place of our own without a roommate. What will I do without constant company?

It seems ridiculous… but in a way I liked it when I wasn’t allowed to be on my own. I mean I was sick and I felt trapped, but I also was comforted in a way because someone was always there. And they were always within an arms length because I simply couldn’t function on my own.

That’s sick right? Missing being ill because I miss the attention? Isn’t that something people seek therapy for? And fear of being alone… also something people seek therapy for, no?

Maybe it’s just because it’s a holiday. Not any sort of real holiday… but still, a day in which everyone gets together and goes out and just has a good time. But for me it is another day in which I can’t get out of bed. :::Sigh::: C’est la vie.

Bring on the violins… and the cheese… apparently this cold is bring out the whine in me.

Happy Halloween.

A Scary Story continued

My mom and I are escorted to my room. I’m given a gown that could have fit 5 of me in and my bag is shoved into a small closet. Immediately the nurse starts asking me “routine” admissions questions. I’d never stayed in the hospital, but I was startled when she abruptly asked if I’d informed my family of my final wishes. Did I have a living will or healthcare proxy assigned? What? I’m 23. I’d never even seriously considered death. I’d never had a reason to. The nurse urged me to fill out the paperwork assigning someone to make decisions on my behalf in case I was unable to. Of course I picked my mother, and the nurse kindly reminded me that I should discuss with my mother what my final wishes were before she rushed out of the room to attend to another patient. Shaken, but trying to stay upbeat and calm, I tried to joke around with my mom. Just don’t leave me a vegetable! Hahaha…

When the doctor came to see me and I asked about tests and going home, he looked at me quizzically, as if I had four heads. No, he explained, this wasn’t just an overnight stay. I was very sick and would probably be there at least until Saturday. It’s Wednesday… Halloween… After some tests, he declared me NPO- my three least favorite letters- meaning that I could have nothing to eat or drink. Weighing in at 90lbs and unable to keep food down, I was fitted with a PICC (peripherally inserted central catheter) line http://en.wikipedia.org/wiki/PICC_line and started on TPN (total parenteral nutrition) http://en.wikipedia.org/wiki/Total_parenteral_nutrition, a milky looking substance fed to me through one of the PICC tubes in my arm. The point was to sustain me while bypassing my digestive tract. In combination with high doses of steroids and antibiotics, my pain began to dissolve away, the vomiting stopped, and I wasn’t running to the bathroom as much. By the weekend I was feeling well enough to start on a clear, liquid diet and starting to feel like my old self again. That is… until I looked in the mirror.

I was shocked. Horrified. Whenever I’ve been sick, everyone has always remarked about how good I look, despite everything. To the point that some people think I’m being melodramatic because I have some strange way of looking the same no matter how I’m feeling. I didn’t realize that my looks had started to betray how ill I really was. My skin was so pale it was almost transparent. My eyes were small black slits set in big purple puffballs. My face was enormous; rounded and puffy, my jaw line completely dissolved by the edema and replaced by two extra chins. While my face was shockingly large, my body was equally small. I no longer had any curves and my clothes hung on me like I was a hanger. Being in bed had also made my ankles and feet swell to twice their normal size, despite the fact that I raced around the recovery floor with my IV pole, timing my laps, at least 3 times a day and I insisted on doing modified yoga in my room.

Being in the hospital was miserable. I was scared and lonely. I was hungry. I missed Jesse. And the bed was really hurting my back. The PICC line in my arm was really beginning to bother me, and no matter how much I complained, the nurses just wrote it off. They told me not to favor my arm. Then when it became swollen they told me not to move it so much because it was getting irritated. When I complained of severe shoulder pain they gave me warm compresses and Tylenol.

All of my memories run together like someone splashed water on them. I remember Jessica, who worked at a different hospital, visiting me; sitting like a ferocious bulldog next to me as the nurses worked on me. Questioning their every move with her eyes and examining their work after they left. I remember being somewhat horrified by the fact that I had gone to high school with some of my nurses. I remember my friend Danielle and her husband coming by with my “nephew” to visit. He was so upset by the beeping machines until I sat with him on the floor and started to play with him. He kept trying to detach me from the IV pole and would steal my finger pulse-monitor clamp. I remember my mom always sitting in the corner typing away on her laptop or leaving to take a conference call in the hallway. I remember my brother staying far off and constantly asking if it was time to go yet. I remember my first real meal… beef stroganoff… and how I asked for seconds. I remember when everyone would leave me and the lights would go off. I remember crying myself to sleep; calling Jesse at 4am to cry in his ear.

I remember being in such great pain and praying out loud; sinking to my knees and asking God why this was happening.

Finally, after what seemed like an eternity… the doctors agreed that I was well enough to go home. Not back to my home in NJ, but at least to my parents’. But my shoulder was still really bothering me and my hand was really swollen. So swollen I was having trouble moving my fingers. Concerned, the doctors ordered an immediate removal of the PICC line and an ultrasound of my arm. Not to worry, they assured me, it was probably just a superficial vein that had a blood clot which could be dissolved with hot compresses. The ultrasound revealed that I actually had a DVT (deep vein thrombosis)  http://en.wikipedia.org/wiki/Deep_vein_thrombosis,a condition which can lead to a heart attack or stroke if not caught and treated.

Amazing. They tell me I’ll need to spend another week in the hospital. But I’m supposed to be in the Macy’s Thanksgiving Day Parade. I have rehearsals! And I refuse to spend another night in that wretched bed. I couldn’t take it any longer. All week I had held back my tears, my stress, my emotions until I was alone; only ever letting my mom and Jesse see me break. But it was too much. I dissolved into tears, shaking in the arms of the nurse practitioner. When I looked up, I saw tears in her eyes. She agreed to let me go home if I came back for tests every day and stayed with my parents until my condition was stable enough for travel. She stressed how precarious the situation was… I was still in danger of the clot breaking free and traveling to my chest. I needed blood-thinners and consistent monitoring for the next six months.

Everyone keeps telling me how lucky I am that they caught this. If I had been discharged and hopped on a plane home, I probably would have died. Now I have a new problem, a new condition to deal with; one that probably could have been caught earlier if everyone hadn’t dismissed my complaints about my arm… but at least it was caught in time.

I had no idea that this would be the first of many hospital stays… and it wouldn’t be the last time I would be told that I was lucky.

As I reminisce about Halloween I can’t pick just one emotion… I still feel the aching loneliness of being alone in a hospital ward. I can still remember the acute stomach pains. I feel angry because I think that the doctors ignored me and didn’t do enough tests. I feel disappointed in myself for not asking more questions and taking my health more seriously. I wonder if this was the beginning of the cancer that is going to keep me locked inside for another Halloween. But mostly when I look back, I feel tired. I have been through so much. I could fill volumes of books with the hodgepodge of memories that I’ve collected just in the past year alone. It’s exhausting to be sick… and I’ve been sick for a long time. It feels like a lifetime. I’m tired… and I long to be myself again.

Sometimes I can’t believe I’m 24.

Trick or treat

Halloween is approaching.

As you are probably trying to figure out which parties to attend and what accessories will match your costume, I sit and watch Tim Burton films and wonder if Halloween will ever be a normal holiday for me again.

For me it is a marker. The beginning of the end of the life I knew. Not really as melodramatic as it sounds, but I do see it as the start of this seemingly endless journey.

So I sit here and sweep away the cobwebs of my memory, trying to remember how it all began.

As the fall foliage begins to turn… so does my health. It’s September and just recently Jesse has moved in and left to go on tour for two months. My colitis had been flaring up badly since early August, so I was seeing a new gastroenterologist and constantly being switched from medicine to medicine. An unfortunate part of any IBD (irritable bowel disease) is that every person’s condition is different, and every person responds differently to medication. So the best method of treatment is the trial-and-error method. And as each attempt failed, I sank into worse condition. In late September, at Jesse’s urging, I decided to go spend some time at my parent’s in upstate NY. I was living off of Vitamin water, Ensure and protein bars and drinking Yogi tea for digestion. I was also swallowing as many vitamins as my body could handle… at least 2 packets of Emergen-C a day and several acidophilus/pro-biotic supplements. At my doctor’s urging, I had stopped dancing and was only working 2 days/week. And still I was tired all the time, losing weight rapidly, and going to the bathroom 20-30 times a day.

My week-long break slowly kept getting extended as my health failed to improve. Finally, I went to see a specialist near my parents. A visit I will never forget… the foreshadowing of what was to come. He was the first doctor to ever mention the “c” word in connection to colitis. I had been holding off on having a colonoscopy because like so many people my age (approx. 25% of 18-24 years olds in the US), I had no health insurance. But he insisted it was important and said that he could perform the procedure at his office, which would keep costs down, and that he could send the images to my GI in NJ. The word “cancer” was enough to scare me into taking things more seriously, although it was only talked about as a possibility for the distant future if we didn’t get things under control. So, once again I extended my stay until I could undergo the colonoscopy.

A couple of days before Halloween, my mom had a small candle party. One of those very suburban engagements which are more of an excuse for the housewives to get together, drink wine, and gossip about the Joneses. I remember trays of appetizers lining the dining room and yet only being able to stomach rye bread dip and feeling weak and nauseous most of the time… only appearing every now and then to say hello and then retreating to my room. That night, the intense stomach pains and nausea started. My mom and I both wrote it off as mild food poisoning and I started staying on a couch in the family room close to the bathroom. But as days went by and I wasn’t getting better and I began to start not being able to make it the 10 ft from the couch to the bathroom without having an accident or throwing up… I knew something was wrong. And it was getting worse daily. After calling Jesse one night at 3 am writhing in pain, he threatened to end our relationship if I didn’t call the doctor the next day and insist on an appointment.

The next day I called the doctor’s office and told the nurse about my symptoms. She called me back an hour later to say that she was reserving a bed for me at the local hospital. I needed some tests and the doctor wanted me to be observed overnight, so I should pack a bag and she’d call when a bed was ready. I called my mom, who was on her way to a meeting out of town, and told her to turn around because I was going to the hospital. Then I called Jesse and one of my best friends at home, Jessica, who is a nurse to update them. A couple of hours later I had a small overnight bag packed and was on my way down the hospital corridor to the admissions office… I had no idea what I was in store for…

To be continued…

Just imagine

Just imagine waking up one morning, looking in the mirror, and not recognizing the face looking back at you.

I don’t know… maybe it’s a bit over-dramatic, but here’s what I see.

The past…

I love old pictures. I always have. But it is hard to look back. I’m looking back at the death of a dream.

I was perfect. Of course I wasn’t really perfect, no one is… but I had so much. Long, thick, curly blond hair that everyone seemed to be jealous of. Dancing constantly had my body in such great shape… I was thin but muscular and defined, with some curves. I was pale, but I have a natural yellow in my skin that allows me to tan easily and keep my tan. My dark brown eyes were a stark contrast to my blond hair and I had a very angular, defined jawline. I spent hours in the mirror perfecting my appearance, even though I always thought I looked best when at the end of the day when I washed all of the make-up away.

But that was part of the job… being vain. Staring at myself and constantly making improvements. And yes… I was extremely confident. I had an alternate persona that was charming and flirtatious, and I knew how to work a room. This diva alter-ego was the one that allowed me to have the beginning of what was starting to be a very consistent career. It was also the one that allowed me to get the attention of every guy in a room, even if I was far from the prettiest girl there.

I wasn’t intimidated by other girls…EVER. I knew who I was and I wasn’t threatened. And I’m not inclined to jealousy. When Jesse and I first started dating, I was the one who made the first move. I actually tricked him into going out with me the first time. But if he had rejected me, it would have rolled off of my back because I just had that type of confidence in myself and with guys. In fact, most of my friends were guys. I understood them. They weren’t catty and jealous like girls.

The present…

When I look at myself now, I feel like I must be going through what some mothers go through. I’ve heard people talk about letting themselves go after they have kids only to look in the mirror one day and wonder how they got there… where their youth went. I’m 24 and I find myself wondering the same thing.

I step out of the shower and off comes everything that I hide behind. I see the full, round face that has been ravaged by steroids. The deep circles under my small dark eyes that always seem to be there, despite the 12 hours of sleep I allow myself each night. Short, dark hair that is thinning out steadily. Now fine and silky instead of thick and full, yet still just as curly.

And I look at my ultra-thin body. The way my skin hangs, covered in stretch marks from my rapid weight loss which came from a combination of medicines, emesis (the medical term for vomiting all the time), and an inability to eat. I rub cocoa butter and scar serum on these bright purple scars that look like scratch marks from some sort of giant cat. And then I see my scars from surgery. The large vertical scar running down my stomach, curving around my navel from my hemi-colectomy. The horizontal scar underneath my clavicle from the implantation of my portacath. And then there is the portacath itself, protruding from my chest like some sort of third nipple. Occasionally there are even plastic tubes that hang from this already creepy-looking nipple-like aperture, making me look like something out of Dr. Frankenstein’s lab. In addition, I also have plastic trans-dermal patches that cover my ribs to feed me with constant amounts of painkillers. And each day I find some sort of new scratch, bump, or bruise. My body is so fragile and easily damaged that my legs are often so bruised I look like I have some form of leprosy. On weeks when I need blood work done, my arms puff up and turn black and blue surrounding the point where the needle was inserted. which makes me look a bit like a heroin fiend.

Every time I get out of the shower, I find some new flaw in myself. In a cruel twist of fate, even though I am losing the hair on my head, the steroids I am on leave a fine layer of blond peach fuzz on the rest of my body. So, as I try not to brush my hair because I don’t want to lose it, I am waxing places that I never needed to before. And waxing is the only way… my skin is way too sensitive for shaving. And if I cut myself… the smallest cut turns into a huge bruise. I hardly recognize myself. Especially when I look back. But it doesn’t bother me usually. I’m lucky. I’m thankful. I’m alive.

And it’s all temporary… I have cancer. Someday my hair will grow back in, the peach fuzz will stop growing in, the stretch marks will fade, and my face will stop being swollen. In my head I know this. Logically, I am aware of this.

And I am one of the luckiest women alive because I found my soul-mate. I found a partner who has seen me on the edge of death and still finds me attractive. He is still with me now even though I have aged a lifetime in the year plus that we’ve been together, and he still loves me.

But then there is the new self-doubt that I’m not used to. The hint of jealousy that starts to churn in my mind that almost feels like bile rising in the back of my throat. Jesse is a performer and also a stage manager. That’s how we met, why we know each other, what brought us together. And just because that part of my life had to end… it is still his chosen path, what he loves to do.

But with that come all the girls. The girls that I used to be. Vain, confident, self-assured. Ones with the diva alter-ego that know how to make every man in a room look at them. And I feel myself panic. How? How can he look at me and still love me after looking at them? How can he love me when I barely love myself? When I simply want to hide in a corner?

I see it in my mind. I know which girls like him. I see the subtle ways they flirt with him. Giggling a little too hard at his jokes or impressions. Finding an excuse to place a hand on his shoulder. Needing his advice or a shoulder to cry on because some guy has done them wrong. I understand. He’s a nice, handsome, STRAIGHT guy. A complete anomaly in the performing arts world. But he’s a nice, handsome, taken guy. And I can see them finally meeting me, because they all know about me, but I’m usually just a shadow until a performance or show that’s nearby, when I finally come out to meet everyone. And I see them look at me strangely. Jesse doesn’t advertise my illness, which I appreciate, but I know they look at me and wonder why he’s with me. Why he would choose me when he could have any one of the gorgeous, tan-skinned, doe-eyed, long-legged, perfectly sculpted girls who faun over him. And I see the ones who do know that I’m sick shake my hand with looks of pity and then look at him even more doey-eyed because they think it’s so admirable that he’d stay with me through cancer. And I find myself fighting the urge to punch them in the face.

But I’m not worried. I know he’s not going to leave me. He’s my partner. We chose each other and we take on each day together. We love each other. If anything was going to tear us apart, it certainly would have by now. But we’re strong. And I know that. But it doesn’t stop me from being insecure in myself. I’m not worried about him. I’m worried about the silly little girls that fall in puppy-love with him. I’m worried about what I’ll look like in six months. I feel ugly and old and I can’t imagine how anyone could be attracted to me.

A lot of my fear is my imagination. But can you imagine if everything you knew was ripped away? If in one year, everything in your life changed. If your dreams died along with your self-esteem? How do you cope with that.?How do you not question yourself and your relationships? How do you stop your imagination from playing out your worst fears?

And how do you stop yourself from punching every pretty girl who smiles at the guy you love?

Tomorrow

Tomorrow is official tumors suck day!

And let me tell you… they do!

Especially large icky ones that make it so you have to lose half of your intestines.

http://www.cafepress.com/tumorssuck

So I’m promoting awareness. Above is a link to the tumors suck store. They have all sorts of tees and stuff… you can even get a thong with an angry looking tumor on it… (sexy, right?) (Actually… more creepy). But they also have normal things like mugs and semi-weird things like baby onesies and doggies t-shirts. But all proceeds go to a support group I’m involved with called “I’m too young for this” which helps support cancer victims under 40.

So check it out… and remember there’s more out there than just pink.

October is lymphoma awareness month as well.