Where's the off switch?

It's so odd to feel completely full of hope and be so happy and strong and the next day feel completely and utterly hopeless and tired and scared. And most of all, lost and alone. And angry, and resentful. This is so negative already, I'm not sure it's ok to even post something like this in fear that someone might actually read it. I think about how ridiculous it is that I sit in school all day or work all day or my internship all day while my mom is up in Cleveland dealing with what she's dealing with, almost like it's irresponsible of me. And I worry that other people feel that way about me too. Like I'm "blinded" by school or work, like all I care about is myself. Like I'd rather be busy and away than actually staring this thing down right in its face. This is not the case at all, but I am worried people think that. I do not want to be doing it. Any of it. But I'm trying to please both sides, getting pulled in both directions and on the brink of being stretched too thin.

I do not want to go to work. Luckily, I have a leave of absence but the stress of having to return in a few weeks has already begun to wear on me. Knowing this sense of freedom to spend more time with my mom and my family and on myself is a great pleasure. I don't want that taken away , when things seem so different now and different things are so much more important now. I don't want to go to school. I only want one job as an RD, and I'll be lucky if I get it let alone any job at all in my field. Why would I waste my time in school doing something I'm not happy with for only one, far away, dreamy job when I could be, again, with my mom? It's the same idea--all these things I feel so forced into, so locked into, when all I want to do is be with my mom and be supportive and helpful and by her side. I don't want to waste all of this valuable time. In fact, I'm rather angry about all of this wasted time that I cannot get back that I'm not so sure is worth wasting in the first place. This is all very challenging, and I wonder what really will come out of it?

A job? A degree? So what? Isn't this something I can get later when things aren't so terrible and we're not in the situation we're in now? Am I going to be a stronger person? Will I be more independent? Or will I be more stressed? Always afraid it will come back? More resentful of people that do not worry about this kind of thing, that only worry about what they're wearing to work tomorrow? I'm not sure. And I'm definitely not sure that I even care. All I want is my mom back to normal. And my family back to normal. And my house full again. Full of dishes dirtied by someone other than me, and full of food cooked my someone else, and full of noise from the family room TV, from shows she watches like Brothers and Sisters and Desperate Housewives. Not the eighth episode in a row of the Golden Girls just to fill the house with some type of space and depth. Like it's being occupied by someone else other than me. I'm tired of me and my dishes and my food and the Golden Girls. And the quiet house. And the worry and stress and nonsense that is my life, our lives, these days.

I want my mom. I want normalcy. I want noise in this house that's not mine. I don't want to feel like this anymore. I want to run because I want to run, and I want to paint because I want to paint, not because I don't know what else to fill my day with. How pathetic. Is it possible that despite all of your hard efforts to keep yourself going and keep yourself "normal" that you still might struggle and maybe even crumble? I can't imagine how that's even fair in this life, but anything is possible, I suppose.

I'm doing my best not to let this happen. Sometimes I feel like I won't make it, and I get really overwhelmed with the possibility of not making it. Is that to be expected in this type of situation? I would think that to be unsure of the future, afraid of the future, worried about failures, and occupied with being "so strong" is probably a normal occurrence in a situation like my family's. But I have no idea, really. I wish I did not worry about this kind of stuff. I wish I had an "off" switch.

"I'm three days old today!"

Today marks mom's third day after her transplant. I was talking to her on the phone this morning when I woke up (the first thing I do every morning is call her, even if I'm going to visit her that day), and she said "I'm three days old today!" She was so excited, and sounded so happy. It made me smile.

I can't really tell you in words how precious she is, honestly. She says the cutest things and is such a brave soul and is such a good sport. Poor thing...I take stupid pictures of her and post them on Facebook and she dresses up in stupid outfits like fairy wings or princess crowns just so I can take goofy pictures of her.

I don't really have anything profound to say tonight, but I was just thinking about her, and how hard it is to drag myself away from her when I don't know when I'll be able to travel back to Cleveland to see her again. Or how hard it is to not sit in bed with her. Or give her a hug. Or kiss her goodbye. Or call her about 10 times a day. I can't stand to be away from her, when she's in the hospital having such a serious procedure. I can't stand any of this really. I feel so trapped, so cornered by all of this. It's overwhelming to really think hard about all of the monumental changes that have happened in my life since January.

That month, we were told aunt Polly was going on Hospice. She probably wouldn't make it past her birthday, in March. And amazingly enough, she was still here in March. However, then we were told mom had leukemia, also in March. Aunt Polly died in April. Mom was at her funeral. I gave the eulogy. Mom wore her wig, in a suit we had to buy to fit her new body from all of the weight she lost. I delivered the eulogy without a single tear and then collapsed on the floor that night, opening my wrapped presents and reading my note from aunt Polly, long written before her death. We found out mom needed a bone marrow transplant to fight the genetic defect in her chromosomes caused by her leukemia. I moved up to Cleveland this summer, after being told her transplant would be in June or July. It wasn't. I moved home to start school the week she left for Cleveland. She had her bone marrow transplant, which I still am having trouble processing even today. All of these things... my life has been completely uprooted, like I'm floating around in limbo, with nowhere really to just "be." How different things are, how scary they are. I still think about these things, all separately, sometimes together, and I am jolted. In shock.

I can't believe my aunt Polly is gone. Still, almost 5 months later, I still am in complete and utter shock. I called her cell phone last week, just to see what would happen. A woman answered who did not speak english. I apologized for bothering her, but after I hung up, she called me back and said something quickly in what I'm pretty sure was spanish, and then she hung up on me. I was hoping to get my aunt Polly's voicemail, just so I could hear her voice. My heart is still so broken. How can one person process all of these things, when so many of them are still so fresh? I'm not sure. I hope I'm not doing a bad job at this.

I feel sometimes like I will never be fixed. Like I will always be this person that's broken from all of these things. One of these things alone is enough to shatter my heart (or anyone's), but so many of them together? I feel like I cannot escape them. Like I am haunted by them, no matter where I am, what time of day it is, what I'm doing. They're always there.

I have a rubber ducky that's pink and has breast cancer ribbons on it, and it lights up when you touch it or put it into water. I bought myself and my mom and aunts one after aunt Polly died. My aunt Becky thinks aunt Polly visited her one day because her duck was sitting on the sink, not wet or touched, and was lit up. Earlier this week, my rubber ducky wouldn't light up when I took a bubble bath, and I was bummed out. I tried everything to get it to light, but nothing would work. On Wednesday, the day of mom's transplant, my rubber ducky was sitting in the middle of the bathtub, on its side (before I got in the shower), and was lit up. I will gladly, and maybe stupidly, take this as a sign that aunt Polly was there that day. Although this is a little embarrassing to talk about, I do feel like she tries to let us know that she's still around. Just little goofy reminders, like a pink breast cancer rubber ducky that lights up at odd times.

I wonder what she's doing, up in Heaven. I like to think that she's very popular up there, like she was down here. I'm so sad she's gone, sometimes I feel like I can't breathe. I wonder if she's friends with lots of people, famous people that she's always loved, like Elvis and Jim Morrison and Princess Diana. I wonder if they were waiting for her, if they came and got her. A whole line of them, just waiting. As we were all anticipating our loss, they were anticipating their gain. She reached out to people that weren't there the last night I stayed with her. Maybe it was my uncle Bob, her late husband (who also passed from cancer), or my grandma. Or maybe Buddy Holly or John Lennon? I have been missing her terribly lately.

I do feel that whatever strength my aunt Polly had in her she passed to my mom. If you were not lucky enough to know her, she had an amazing strength and personality that was memorable almost within the first five minutes of knowing her. Her online Canton Repository obituary is definitely a testament to this, seeing as there were nearly eight pages of comments about how unforgettable she was. People always seemed to mention how strong she was. My mom, who calls herself a "big chicken," is one of the strongest people I know. And while she was always strong, having dealt with cancer and chemo and radiation nearly eight years ago with breast cancer, she is now dealing with leukemia and a bone marrow transplant with this indescribable strength and grace that is truly amazing to witness. I like to think that aunt Polly passed on her strength to the person who needed it the most, since she didn't need it anymore in Heaven.

Putting Things Into Perspective

Today is the day after mom's transplant. How amazing, to think that yesterday, she was laying in her hospital bed, completely asleep from pre-meds, and being infused with a complete stranger's bone marrow, just hanging there like an IV, and it only took 18 minutes. 18 minutes, to save someone's life. I'm still baffled, more than 24 hours later. I will probably be baffled, actually, for the rest of my life, to be honest. How crazy! I just can't get over it!

The funny thing is, for how stressed out and anxious we all were about it, about 5 last night when her meds wore off, she was sitting up in bed, laughing, taking pictures, eating almonds, talking and telling stories...the whole time I was sitting there, I kept thinking, "Did that all just happen? Did I make it up?" It was so amazing to see, you would never know she was sick, had cancer, just had a bone marrow transplant, aside from being bald. I am completely amazed and astonished at such a thing, to have a transplant, to have something foreign inside your body that will save your life, and you're sitting there, just chatting like nothing ever even happened! Today, I still felt that same disbelief. "That's what we were all so worried about?"

But I do have to stay realistic, without being negative. Everyone knows horror stories about leukemia, about bone marrow transplants, abut infections. Especially when you work in the medical field. It's practically all you hear, all you see, all you think about it, which only intensifies when the person you love dearly is faced with all of it at once. How frightening, really. So, after being so scared and so worried and so anxious and upset and angry (the list goes on and on), to feel like I did today, almost on a high from happiness, I now feel completely and utterly exhausted. This roller coaster of emotions really is almost too much to handle. Because now, although she feels great, she will start to feel tired and like she's been run over by a truck, until her blood cells start to re-populate. And with that comes susceptibility to all kinds of nasty stuff. And let's not forget about the oh-so-fabulous graft vs. host disease. Jeeze! After having 5 rounds of chemo, 5 days of total body radiation, followed by 48 solid hours of the strongest chemo, and then topping it off with a bone marrow transplant....isn't that enough?! I guess not.

To see someone so sick, and then to see them start to regain strength and grow back hair in between chemo treatments, and then to watch someone physically and mentally fall apart facing a transplant, and then to watch them sit up in bed, full of color and life, like nothing is even wrong...you can almost paint a picture in your head of the many ups-and-downs she has taken. It's no wonder all of us are so fatigued, so overwhelmed, and just "existing" at this point.

I must say, though, that through all of us, all 7 months of this, I have never been more impressed and more amazed at such a person. To think of all she has been through, from her first experience with breast cancer to this, to think that she's had 6 bone marrow biopsies, 6 rounds of chemo, she's been sicker than most of us will ever be in our whole lives. To really sit back and ponder that, to be honest, my brain can't really do it. We always think of how we would be ourselves in that situation, but when it really comes down to it, we have no idea. Mom always calls herself a "big chicken." Really, I often wonder if she truly has any inclination at all about how amazingly strong she is to face what she faces everyday of her life. Some of us will never know this type of strength, not even close.

I was talking to someone a while ago about how frustrated I was with listening to "whiners," people that whine over dumb crap that really has no match for anything really worth actually whining about! She looked at me and said, "You know, Julia, sometimes the hardest thing a woman will ever have to do is baste a Thanksgiving turkey!"

Whoa. Talk about putting things into perspective.

A new spin on things

I am sitting in bed wide awake, even though earlier tonight, around 8, I could barely keep my eyes open. I hate that.

This typically would happen on the night before a big test, starting a new internship site, or leaving for an exciting vacation. How odd, though, that I'm anticipating my mom's bone marrow transplant tomorrow. It's still unbelievable to think about, and it's amazing how much things can change in a matter of months. I'm so amazed by this.

Tonight, I got an email from a friend who moved away for a job. She wanted an update on my life, and I had described awaiting the transplant, finishing up my Master's and internship, and taking pre-reqs to get into PA school. Her response: "i can't believe you went from joining the army to PA school! what a difference a year makes!" No kidding.

I wanted to join the Army to be an RD and serve my country and do some work in third-world countries, providing impoverished people with proper nutrition and clean water. I wanted to spend some time traveling and seeing other worlds, to take Adrian since he wanted to travel as well. To do something more than stay in my safe bubble, to challenge myself and push myself further than I've ever been pushed. I wanted to join after I graduate. I graduate in 8 months.

But all of this changed on March 16, when my mom was diagnosed. Obviously, leaving her side isn't an option anymore.

I guess I got what I asked for, huh? "I wanted to push myself further than I've ever been pushed." Right.

It's hard, after so many months of putting on a smile and a brave face for everyone around, to fake it for much longer. Not only has my smile and my brave face worn off, but so has my patience, understanding, concentration, self-concern....so many things, gone. Continuing from my last post...I even lost my drive to take care of myself, which was always so important to me before. So, I am trying a new approach to all of this: What if you were in the Army, Julia?

Now I know, I'm not in the Army...but I wanted to challenge myself, to push myself, and I guess I got it, one way or another. I am juggling a Master's, internship, thesis, sick mother, bone marrow transplant, grief from losing Aunt Polly, and driving back and forth from Cleveland to Canton several times a week. In hindsight, this is nothing when compared to what my mom is experiencing, sitting at the Cleveland Clinic, away from her job, home, family, friends, awaiting a bone marrow transplant from a perfect stranger half-way across the world...nothing, compared to this. But, as I said, I am trying to change my outlook, and while I'm not dealing with what my mom is dealing with, I am still dealing with my life, and things cannot just stop. I have to be strong, I have to be patient, and I have to be kind, like I have always been, although it gets harder and harder each day. I have to continue to work and focus, and I have to keep up my faith and stay positive. I have to take care of myself. I need to take more time, even just a few minutes, to keep myself healthy and to remember that if I am not well, I cannot be well for my mom. And of course, being with her is most important. I have started running, taking vitamins, taking antioxidants, and eating ultra healthy to remain the best I can be. I will not let this ruin me or make me forget what is important to me and what will always be important to me. I won't quit, and I won't fail, because taking care of myself and making sure I'm healthy and happy is what my mom needs right now, what she needs to know to feel comfortable...so she can focus on herself.

I have let myself slip a little the past month or so, and I am done with that. While this outlook won't change overnight, it will, however, continue to improve more and more with each day, and I have already started and have already felt the benefits and adjustments. Just like, after tomorrow, she will become stronger and healthier, more and more with each day, and she will soon feel the benefits as well. I cannot wait for this day to come, when she is feeling great, walking through our front door, back to her home and her family.

Cleansing

Today is mom's fourth day at Cleveland Clinic and third day of radiation. We are going day-by-day at this point, and with each afternoon, about 4:00 or so, comes a sigh of relief, "Ah, another day of radiation done. And I didn't barf today." It's a good feeling, both for the patient and the family! Another day done. No barfing. Awesome.

Not like this blog is really about me or anything, but I have started a cleanse. This is really out of my realm, because I typically don't "believe" in them, seeing that your body, especially your colon, is a perfectly well-oiled machine already programmed to "cleanse" the toxins and junk from you. However, with all of the stress, and exhaustion, and constant worry, my body has taken quite a beating, with weight gain, alot of it being water weight (so much, in fact, that I can't even put my rings on!!!), muscle loss, just all around fatigue, which as we all know is a viscous cycle where you continue to get more and more fatigued and more and more heavy! It's terrible, and mostly in part due to stress. Not like anyone is really interested in my personal bodily functions, although I am dietetic student and this basically is the topic of conversation during many a work day...but stress definitely takes its toll on some very important functions, if you catch my drift! So, I've decided to do a cleanse and help myself feel better.

This all started from looking at my face in the mirror the other day. My skin was broken out, I had black circles under my eyes, and my eyebrows were so overgrown...I can't believe I've been walking around like this for so long. It's amazing how something like your mom having cancer can actually cause you to completely forget about yourself, even stupid personal care like plucking your eyebrows! I became more self-aware, and realized how much weight I'd put on in the last several months. And I felt really awful, really bad for myself, actually. Really ashamed that I had treated my body so terribly. So, hopefully this cleanse, along with getting in the habit of running again, will help out. I need to get rid of all the junk in me, and I don't just mean the "stress" junk, physically. Much more. Much much more.

Among running, cleansing, plucking my eyebrows, painting my nails, and goofy things like that to make myself feel "taken care of," I am surrounding myself with meaningful people and doing things that I find calming or exciting. I love to take pictures, and I love to paint. So I've been doing alot of this lately. I also love to write, very much. So this blog, along with updating mom's friends and family on Facebook, I have been able to fulfill my need to write. So, I am trying to cleanse the outside too, trying to maintain a normalcy and rhythm in my life. It's frustrating, but also welcoming to have such a shock, to look at yourself and say, "Oh my gosh, what have I been doing to myself?" (Or not doing to myself?) It's a terrible realization. But maybe just what I needed. Hopefully, in the near future, I can squeeze in some time to start paying attention to myself again, and despite everything that's going on, not feel bad about it.

It's weird to feel guilty about taking time to focus on yourself, though. It's a perfectly natural thing to be slightly vain, and to do things that make yourself feel good, like whiten your teeth or paint your nails. As long as you're doing it for yourself, and not someone else. So this diagnosis, this desperate need for a bone marrow transplant...it really takes the focus, even if it may have been dim, off of you and onto that person. I have put my heart and soul into my mom, or things that are important to my mom, but not so important to me anymore, like school, for example. All I can think about is her, but all she ever stresses is that I need to stay in school. Or stay "normal." I know this is the right thing to do, but all of my focus has been shifted to her, and it's hard to switch it back to myself during such a time. So many things have been a struggle lately. Especially sitting down for 10 minutes, quietly by myself, to paint my nails. To just take care of myself. How ridiculous.

On the other hand, my mom is also being cleansed. Of this terrible disease, of work stress, of house stress. Although, I know now, work and house stress would be much welcomed rather than what she's currently facing. But, so is life. Hopefully, after all of this is over and she is given her new bone marrow, her body will be cleansed of all the disease, and she can grow and become a happier, healthier version of herself. And she can be cleansed of all the bad things in her life. More than just the disease. Much much more.

I am hoping that this "cleanse" lasts much longer than the actual act itself. Meaning, I hope that further down the road, we will still be cleansed. We will be happy, and calm, and free of this type of stress, and able to really just focus on ourselves again, as simple as that may sound. How long do you have to go after a bone marrow transplant before you stop worrying about cancer and chemo and getting sick again? I have no idea. But I hope that we are all on the right track.

Bon Voyage,Bon Chance

Today, Patrick Swayze died. He was 57. My mom is 58. He had pancreatic cancer. My mom has luekemia. She has also had breast cancer. While, to some people, they may look at this and say, "Yeah, so what? People have cancer...this doesn't make the stories connected." The thing is, though, unless you've experienced it in some way, you really wouldn't understand the connection. But there is a huge connection. One that, as soon as you find out that a friend's parent has cancer, or you pass a woman in the store with no hair or eyelashes or eyebrows, or you see a loved public figure like Farah Fawcett or Patrick Swayze lose their battles, you can feel it instantly. It's a weird feeling, a mix of emotions and memories, an unspoken "I know, I understand" that you can pass along simply by making eye contact. This type of struggle, this type of loss, this type of battle cannot be understood fully unless you've been there. Cancer is not an "I can totally imagine where you're coming from" type of illness. And while I sit here, perfectly healthy and cancer-free, and no, I do not know personally what my mom is going through, I can identify with the ache and worry and constant fear that lingers day-to-day when you're watching this type of battle and completely helpless. I look at other people with no hair, with daughters and husbands by their side, and I can see the fear and the stress in their face, and I can feel that connection. I see their worries of watching their loved one die, taking their last breath, like I did with aunt Polly. It's quite an experience, calming yet somehow very haunting. And worrying that you'll have to watch it again someday. Unless you've been there, you probably wouldn't understand exactly how this feels. And I can't really describe it in the way I'd really like to.

Last night, at my mom's prayer vigil, I looked at her face and I was really unsettled by this new look I've never recognized before: complete and utter fear. I've never seen anything like it, and even now, to picture it brings stinging tears to my eyes. Not the kind of tears that come from sadness but the kind that come out of anger and out of horror, if you will. Everyone stood around her, praying for her and wishing her well, and at one point, I looked up at her and I literally was rocked by her expression.

She had her eyes open, even though everyone else's eyes were closed in prayer, heads bowed. She was staring straight ahead, eyes glazed, deep in thought, tired-looking, her black ballcap over her brow. Her eyes were wide-open and physically upset, a panic across her face, all while trying to hold it back and remain composed. I'm not sure if I can do it justice. It was something I've never seen before, and made this unfortunate and sad experience feel all the more real. The whole evening "sealed the deal" for me and I think many members of my family. I think when you "send off" your family member to such an experience like a bone marrow transplant, an event like that the night before she leaves really sets it all in motion. Like when you're graduating and moving to a new state to pursue a job: "Bon voyage! Have a safe trip! Enjoy your time there! Good luck! Hope to see you again real soon!" It was all very unsettling for me.

This morning, I awoke feeling really defeated and anxious. The first thing I did was go downstairs and see my mom. She was sitting in the recliner, feet up, in her robe, no ballcap, with her glasses on. So precious. "Goodmorning, Beebee," she said. I like when she calls me "Beebee", even though I'm 23 and am certainly not her baby anymore. I can't help myself from crying right now as I write this. Sometimes, when you're distraught, and so upset that you can't even really make sense of how you feel, there's something really comforting to feel your tears roll over your cheeks and to just sit there and cry. This is what I'm doing right now, in between writing these paragraphs. In fact, I have basically been doing this, crying like this, since yesterday morning. Knowing how close it was, and now, tonight, sitting in my quiet house by myself, and it feels all too real. My family is separated, torn apart by this.

I visited with her this morning and helped her pack a few final things. I got ready to go to work in between hugging her whenever I got the chance. The final hug was the hardest of course, and I just kept saying, "I don't like this" while I tried really hard not to cry. "I don't like us being far away. I don't like going to school. I don't like not being there." Sometimes I'm really overwhelmed with how terrible things are right now. Just terrible. And this isn't a negative attitude towards life in general, but simply just a fact for me and my family. Things really are terrible now.

I followed them outside as they walked down the front porch to the car. I hugged mom one more time. I told her I'd see her in a few days. (A few days? You're going to start chemo and radiation that renders you defenseless and I'll see you in a few days?!) I watched them get in the car, but I closed the door before they pulled out of the driveway. I couldn't watch that. I couldn't watch her look at me out the window and wave to me, trying to smile, like I know she would have done. I just couldn't watch that. My heart can't really take stuff like that right now. Oh God, just to picture it, like I've seen it in the past. I couldn't have done that. Although, it apparently hasn't helped at all to try and "protect" myself like that, because I'm sitting here crying like I'm 10. Really crying hard. But that's ok.

Just to imagine something like this, something so heart-breaking...and for it to be your mother. Or whoever is close to you, one of the loves of your life. I can't believe this is happening to her. I can't believe that she's just lost her sister, watched her take her last breath, while she herself was being pumped full of chemo. I can't believe that she has to get even more chemo, even more radiation, away from home, so sick and helpless and weak and so so so susceptible and vulnerable. And I can't believe I can't be there with her everyday. Even if we don't talk or if she sleeps the whole time, I'd like to be there with her. Next to her. I miss her alot tonight.