Turn around and face your fate…

I know its been a little while. I took some time off from writing in here, because I needed a break and because I’ve been busy. A lot has happened since I last posted.
First off, the City Paper did a cover feature on me that you can read here:

http://www.charlestoncitypaper.com/charleston/tough-titties/Content?oid=1422138

I was proud to do it and happy that it was so well received. I heard wonderful things from many people. I never thought I would find myself on the cover of anything, and certainly not for breast cancer. Seeing myself in newspaper stands all around town was a strange thing. I was pleased that it touched so many and that the article was beautifully written…but a bit taken aback by how revealed and exposed I felt afterwards. Which is part of why I didn’t write here for awhile. I wanted to keep writing, but knowing that many people now had access to the blog made it feel a lot less private. I know I am writing a public blog on the internet that anyone can read should they look for it, but I guess I didn’t feel like that many people were reading and only my good friends were checking it out. And maybe that is still the case. The story has come and gone and maybe people have lost interest by now…either way, I do want to continue writing here. It is still a place I can write about the daily struggles with breast cancer. And I will continue to write it not just for myself, but for the women who are also struggling with it.

When I was rediagnosed this past March, I combed the internet for a lot of personal blogs by women with breast cancer. I found one whose story really interested me and who I felt connected with somehow. She was younger, like myself, but married and without children. She was married to a wonderful man who was frantic about her new diagnosis. He was fanatical about researching the internet and calling doctor friends about who she should see, what she should do, where she could find the best possible care. In a way, I envied her, even though she griped about his emotional state being far from calm, cool and collected. I envied that she had someone who cared so much to run himself ragged trying to “figure it all out” for her. I didn’t have exactly that. I had my parents, a boyfriend who I lost along the way, and friends who were supportive…but I envied her life and her marriage and that she had someone who loved her so much that he was near losing his good mind over it. Of course, you don’t want anyone to ever lose their minds over your cancer diagnosis. But you want someone, anyone, to really…I mean, REALLY…give a shit. Someone to take some of your burden…carry some of your weight…fight for you when you can’t fight anymore.

The past two months have been really hard on me. A lot of good things have happened…the article, Race For The Cure, seeing old friends, feeling healthier and more energetic, and my hair has grown back a good bit. I’ve even taken a trip to Boston to visit my pregnant sister and her husband and see friends I haven’t seen in years.
But a lot of bad things have been happening too. I can’t get over some stuff and I’ve been having a hard time moving on. An incomplete surgery and a painful, drawn out breakup have made me sink into a bit of a depression…a huge depression. Its been very hard to get up and get to work in a timely manner, because I haven’t been sleeping well at night and its been difficult to gear myself up for each day. Its also been hard to talk to clients about my situation repeatedly, which was something I used to be okay with, but right now seems to depress me further. Telling people your sad tale over and over sometimes just reinforces how sad it is. And I know what people think. I sense how they feel sorry for me…or that they pity me. Or that they are tired of hearing me talk about my shitty cancer situation.

I try not to talk about it. But its hard to avoid talking about. How do you avoid talking about whats been the center of your life for the past 8 months…really, nearly the past 3 years? Its not easy. And its not that I don’t want to talk about it at all. But I hate beyond anything else feeling like I’m fucking leper. I hate the puppy dog eyes and the sighs and the “I’m praying for you”s. I hate feeling like I’m all alone, I’m on my own sinking island, and that I’ll be sitting on this sofa by myself until I die. I often close my eyes and try to imagine what my life would have been like if none of this had ever happened to me…and I can’t.

I have no idea what it would have been like…but I imagine it would have been grand.
I am angry that I never had the chance to live like I wanted to. And now, I am forced to live this way…so angry… so let down that I spent my good time doing stupid shit, with stupid people, wasting time…so much fucking time.
I am bitter. How could I not be? I don’t understand the women who have pasted smiles on their faces and call themselves strong, ass kicking survivors. I am just NOT that person, even though others might think of me that way. I know, in my heart, I am not.

I am weak and afraid. I am afraid this is it. This is all I will get out of life. This is the best it can be. That I will be alone and afraid. And I don’t want it to end like this.
I don’t want it to be this way. But I can’t see the light anymore.
I’m going to try to change the way I’m feeling…I know I need to. I know its important that I love every single day, that I appreciate everything, that I find beauty in sadness and believe that the sun will shine again. I’m trying so hard to remember that it will shine again. I need help remembering. It has been so long.
The first time I feel great happiness again…I will never look back.
I swear to all of you, I won’t.

L

One day, this will all be a dream…

This past week has been trying, to say the least.

I had my reconstructive, phase 2 (I won’t say “stage” and confuse everyone) surgery on Wednesday. As some of you know, I had been looking forward to this for a long time. I was very anxious and excited to see the final cosmetic revisions of my massive surgery that I underwent in April. I went into the hospital Wednesday morning and came out that afternoon with a different attitude altogether.

I was a little upset with some of the results that I called my plastic surgeon when I got back into the car…I was feeling emotional and tearful from the anesthesia as well. My surgery did not go as well as planned and my left/cancer side breast skin was not moving around the way it should have/the way the PS wanted it to. Because of this, my left side flap was only partially taken out. It was made smaller and sewn up at the bottom, while my right breast flap was completely removed and I have one stitch/scar line. And I still have these partial nipples, which were to be filled in and tattooed over more when this final surgery was completed. I don’t know when that will happen now.
My PS said that we may have to wait another 8 or 9 months to try anymore.

It is disappointing and I am sad thinking of doing more surgery, especially surgery that seems very, very far away. I wanted to be done with his chapter of my life so much, to be able to move forward and feel confident and happy and excited to start living again. I am let down that I have even more hurdles to climb over…and I won’t be climbing over them in any short amount of time.

I’ve spent the last couple days in an emotional fog, reeling with the thought that this may just be as good as it gets. I may not have the option to have a perfect looking reconstruction. I thought about how maybe I should have just had a simple mastectomy. Being flat chested wouldn’t have been the worst thing. I often think it hurts me to deal with the reconstruction so much because I once had beautiful breasts. I’m not just saying that. They were great. I loved my breasts. And I know I cannot compare anymore…but I can’t help it…it is what I knew for 29 years.

It sometimes seems so much easier for the implant girls. Implants always look great to me. I know the expander part isn’t fun, but I didn’t have the option of implants (because of radiation) and if I had, I think I would have chosen implants over this. Less scars, less warped tissue and skin, less healing time. I would have been happy exchanging every 10 years or so. As long as they looked like normal breasts…or as normal as possible.
With all that breast cancer patients have to go through, we should at least be granted a nice rack. Some dignity in this otherwise dignity free affair.

I have an appointment on Monday to discuss what happens next. And I may shop around for some other opinions as well.

I’m angry that I have to deal with more of this. This shouldn’t be the life of a 30 year old woman, or any woman for that matter. I haven’t even lived much of a life yet. I haven’t met my future husband. I haven’t had kids. I am living alone with my dog. And breast cancer. At 30. What is fair about that?

On the other hand, I am thankful that I am not sitting here with mets, or sitting here flat chested because I never had an option to do reconstruction AT ALL.

I am lucky…and it is true, there is always someone worse off. But there is always someone better off also. I have a right to be upset and be sad. Its my body. Its my life. I don’t want to become a prisoner in my own body before I’ve even lived my adult life. I don’t want to feel less attractive than the next woman. I don’t want to limit myself with what I can do or who I can date or what I can wear or how beautiful I feel. I’m screaming at myself to fight hard against these feelings of unworthiness. They are so unbelievably powerful. I think anyone who has been in similar shoes can understand. We all have our flaws, but dealing with your internal wars along with external, cosmetic battles can be too much for anyone.

I have (had, had, had!) cancer, which is invisible to the naked eye. Something I can’t even see or look at. Something I want to hate but can’t even point a finger at. Invisible abnormal cells floating around in my body…choosing whether or not they will grow or stay the same or go away completely. Cancer cells grow, divide and never die…they just multiply over and over again. I’m not able to see it, so maybe, in a weird way, its not as hurtful to think of as the outside physical changes. I can remember how I looked before, how I always felt good about myself, even when I gained an extra pound or five. I don’t feel that way now.

I told my therapist, I don’t know who is going to want to take on all of this.

Relationships are tricky even before you’re handed the cancer card. Afterwards, you either deal with the partner who sticks by you and never lets you down…or the one who bails. Or the one who tries to deal for a period of time and then bails, because they ultimately don’t have what it takes to cope. If anything, cancer is a really good screening process! I can joke about this, because it is just so completely messed up. I’ve come to accept most of it, although sometimes it is hard to imagine having any kind of normal life now. But I have to try and move beyond what used to be “normal”…and God knows, normal for me never was really that normal to begin with.

When and if I ever do meet Mr. Wonderful, it will be a battle for a future together. I don’t even know at this point if I can have kids. Chemo…lovely chemo…could have also done a number on my reproductive system. I suppose time will tell. I think about this a lot, if I even want to go through the trouble of kids, after all of this… In spite of the horrible treatments I have been through, the drugs I will continue to take, and any possible future situations, I do want the opportunity to try everything, including kids if that day comes. Although, my feelings may change regarding this at some point. It is hard to say…so much depends on who is in my life and where I am at.

I am proud of my sister who is pregnant, and trying hard to make her dreams come true.
She fought her way to this place and now she has what she always wanted. A family on the way and a wonderful husband.

I know one day I will make it there too…and I will look back at this time and be so glad that it is in the past, it is over. I wish I could jump to that place right now. But I know this fight will make it so incredibly special and wonderful when it does happen. I know eventually I will be the happiest I’ve ever been. One day.

Hang in there with me.

Lowry

a return to life.

Well…its all over.

The chemo has ended, albeit sooner than expected. I went to my doctor a week after the rash debacle and he wanted to stop before my last treatment on August 17th. I was unsure and slightly excited, but also wanting to know if it would be the best thing to do. He said that not completing the 4th round would not put me in harm’s way and statistically didn’t show a higher rate of recurrence and that many women who have reactions to the drugs have to stop treatment. I went for a second opinion to ease my mind and the other doctor agreed and said my next chemo could cause an even stronger reaction and one that could hospitalize me or be potentially fatal. So, with that, I celebrated the end.

But with the end comes a new beginning and one that I am not sure I am ready for. Even when you finish chemo, which is a relief of such magnitude I cannot even describe, there are still drugs to take for years and doctors visits and tests and scans and side effects from the drugs that can be completely debilitating. It is never really “the end”.

And there is also the post treatment freak out, which typically happens because you’re not actively doing something like chemo or getting tests every week. You start to get anxious, wondering if its still there, how or when will you know if something is wrong again, how bad off will it be if it comes back, how am I going to cope with the rest of my life dealing with this mentally and physically. I honestly don’t know how I am going to do it. I feel like I’ve been handed a terminal sentence, without even being terminal…the constant fear and stress and not knowing is enough to drive anyone crazy. It is incredibly hard to know that I cannot live my life without this in my head and resting heavily upon my heart. And to know that anyone who is a part of my life will have to deal with it as well.

Its a devastating blow and one that I have yet to come to grips with. I don’t know if I ever will. Every day is a new challenge and every day I have to begin again. Remind myself of what life can be, what it can offer me. Remind myself that I don’t have to suffer through this alone, that people love me, that I can be as happy as I want to be, even with the pain of a cancer diagnosis. It all comes with a catch. It is a double edged sword…feeling like I can do anything I want now that I have this newfound appreciation and recognition of life’s worth, that I can love deeper and show my heart in ways I have not been able to before and knowing that I can take on the hardest trials…but also knowing that I am, more often than not, very alone in these feelings and as much as I try to not let it consume me, it is so hard. I just cannot accurately describe. I want to be able to share my experience and give back, but often I want to hide out and isolate myself. I guess this is why this blog has been a relief for me…somewhere I can release these feelings and let them out and escape and breathe.

My doctor wanted to start me immediately on Femara and possibly Zometa. Femara is an AI (aromatase inhibitor) pill taken by postmenopausal women daily to prevent recurrences in hormone positive breast cancers. Since I’ve been put into a menopausal state by Lupron (the shot I receive every 3 months), I can take this medication to help prevent future recurrences/metastasis. Femara can cause a lot of pain and it scares me to take it. There are other options if it is too strong, but I have read of women who say they can barely get out of bed in the morning because of the bone pain and because they feel 100 years old. My doctor wants me to let him know immediately if it starts to cause major pain. He also wants to see about me trying Zometa. Because Femara can cause severe bone loss or osteopenia, I had a bone density test last week to get a baseline. Zometa is an IV administered drug called a bisphosphonate that I would have to receive anywhere between every 4-6 weeks or every 6 months depending on what my doctor wants, and it helps prevent bone loss during breast cancer treatment and also substantially cuts the risk that the cancer would return. Zometa has some scary side effects, such as jaw necrosis or ONJ. You may have seen ads for Zometa on television as it is commonly given to people for treatment of osteoporosis, but because doses of IV biophosphonates used to treat cancer can be ten times higher and because they are administered more frequently, cancer patients are more at risk for developing the crazy/bad side effects.

Its all a lot to take in. I am very nervous about taking more drugs. And nervous about side effects…what will happen to me. Its overwhelming amounts of information. A lot to tackle. And I will have to be taking these drugs for at least 5 years, unless something major changes (i.e. I want to have a baby, I have terrible side effects, I have a recurrence, whatever…).  And to answer the question I know you’re all dying to ask…no, I don’t HAVE to take any of these. Do I LIKE the thought of taking them? You’d have to be insane to think that I would enjoy putting myself through this. But do I like the thought of getting cancer again? This is what I ask myself, everyday. I’m taking these insane preventative measures because I want to LIVE, damnit. As long as I can.

I hope this year brings me beautiful new experiences. I am so open and ready for good and positive change.
I am beyond ready to return to the land of the living.

L

Chemo round three/when the shit hit the fan.

I never liked that saying. Leaves a nasty visual.
Although, for this particular occasion, a world spray painted with shit seems kind of appropriate.

My third chemo was uneventful at first. I forgot to take my day before doses of Decadron, a steroid to keep allergic reaction down. I called and they said it would be okay, that they would fix my dosage accordingly. I rolled down there and they did their usual routine…took my vitals, stuck the chemo needle in, took a few vials of blood from my port, IV’d me with saline, Benedryl, Ativan, Decadron, more saline…then they read the report on my counts: down on white blood cells again, down on red blood cells again. I received my Cytoxan, then the Taxotere.
My doctor and I had decided, due to my low counts last round (and not getting a Neulasta shot after round two, that we’d do the Neulasta shot again. Weighing out bone/joint pain vs. a potential hospital visit for an virus/infection you catch isn’t too difficult. I figured I’d rather deal with the bone pain again than worry about every single door handle I touch and worry each time I went into public.
So I got both the Aranesp and the Neulasta shot the day after.

The next day I immediately felt like crap…achy, super sore through all the major bones, tired as hell. Beat down. The same thing the day after that. Then, I noticed a weird pear shaped bruise on my lower calf which turned out to be nothing, but was worried for awhile that it was a potential blood clot. Had to get that checked out.

Then the fevers started. It got so bad at one point that I started shaking violently all over and had heavy blankets all over me, wool hat and covered in clothing (socks, pants, long sleeve shirt) and shook like that for a good 20 minutes until the medicine kicked in. It was awful. My boyfriend was out of town, so I stayed at my mom’s house and she was taking my temp every couple hours. I felt as though I’d gone back in time. I was sleeping in my old bedroom also. All of this made me feel about 10 years old.

I called the doctor on call (not my own doctor) who advised me it was my choice if I wanted to go to the ER and he’d support it, but also said if I wanted to wait till the next day to see my actual doctor, that would be okay too. I decided to wait, because I hate ERs and I knew I would be sitting there for hours on end and I wanted to be comfortable at least.
The fevers abated after about 3 days. But every night was ghastly.

The next week after I started feeling better, I tried working at my salon’s new boutique. All was well, and I was enjoying the day of being out and trying to give working a shot again. I was exhausted after 4 hours of being there. Josh and I went to lunch afterwards at G&M and I almost fell asleep in my cold cucumber soup.

The next day, I discovered a major case of hives/rash had taken hold of my face, chest, the back of my neck and shoulders, and patches on my elbows, hands and knees. I looked like I’d been rolling around in poison ivy for a couple of hours. It was itchy in places, not in others, and was just horrid to look at. I also had discovered the lymph nodes in my groin were swollen and I was developing what is affectionately termed “a Bartholin’s cyst”. I was very freaked. All I knew was that the side of my crotch had become swollen and sore and hurt like a bitch.

Apparently women have two pea sized glands that can become blocked and cause cysts that can range in size from a pea to a marble. My lymphatic system was trying to flush it out so it became sore and swollen, similiar to what your throat glands do when you’re sick. I called my doctor and went to his office where they looked at me with blank faces. He sent me off to my dermatologist to get a biopsy of my crazy skin rash. I was so not looking forward to another biopsy. In fact it really kind of scared me. I was envisioning enormous skin sections they would be removing from my body. But they only took a 3mm punch from the back of my neck and sewed 3 lovely stitches, which will be removed on my birthday. How exciting.
Then I ran off to my OBGyn who looked at my crazy situation down below and gave me a script for antibiotics. Its been a day and I’m still in some real unpleasant pain.
I will find out the mystery skin rash diagnosis on Monday.

Until then…

A lot of other things are going on right now in my life, which I am choosing not to discuss. Because its not for this place. But I am struggling. I wish I knew the answers to all of my questions. I wish I knew if I am making good choices.
Right now, it is very hard to tell. But to be in this place, alone, dealing with all of this, is beyond anything you can imagine. It is hell. And I hope no one else ever has to be where I am right now.  I have support and friends and family and I thank you all for it.
But when I drove home after picking up my drugs from the pharmacy last night, it really hit me. I am alone. Even with the people who love me and talk to me and care for me. I go to sleep and wake up alone with this. I deal with this alone everyday. No one else is in this body with me. And its fucking hard. Really hard. I would go so far as to say, this is the hardest thing I have ever done and will ever do in my lifetime. I know I will experience other tragedies…deaths, hardships, loss…but going through this has sapped me of so much of my strength. It is hard to keep fighting when you want to give up. I do. I want to give up. I know that I can’t. And that is the worst part. I know I have to keep doing this. All I want is a break. Just some time of happiness and peace and love.
I just want to be able to find humor in something stupid. And not worry. I want to stop thinking about this after August 17th…and I know I cannot. It will be here, part of my life, forever. How can that be possible? How can this have happened to me?

I don’t know anymore. I don’t know where I’m going. I don’t know what to do with myself after this. But I hope the answers come. I hope they come soon. I hope they fall on me in waves on the eve of my 30th birthday next Thursday, the 13th of August.
I hope someone smashes a cancer cell in my honor that day. I hope they discover the cure that day. I hope another woman lives to see one more day.
I hope I live to see thirty more.

Chemo round 2

I thought I should mention I had chemo again on July 6th.
My second go at it. I was planning on updating prior to today. But I’ve not been in the mood to write much recently.
Been feeling pretty tired and sluggish. This second round took it out of me a lot faster than the first. I was down for the count the next day, instead of 3-4 days after.
Before I had my second round, I noticed my hair starting to come out. I was wondering around the 10th day after my first chemo if it was going to happen at all…maybe I would be one of the lucky ones that didn’t have their hair fall out! My own doctor had told me by day 7-10 it would start to fall out.

Then, a number of other breast cancer girls informed me that it usually started around day 14. And, like magic, the hair started to fall out on day 14 exactly. At first, it was slow. I would run my fingers through it and a few strands would come out. Then, I would shower and notice more coming out when my scalp was wet. Then, I noticed strands on my pillowcase, on my computer, on a plate of food I was about to eat. I ran my fingers through it and 10-20 strands would be in my palm.

So I grabbed the clippers and let my boyfriend shave it all down for me. It wasn’t too traumatic, strangely. In fact, it was kinda liberating. I felt some relief that I wouldn’t have to watch more hair coming out. And the whole G.I. Jane look wasn’t too awful on me, much to my surprise.

But those good feelings were quickly erased as I started to find bald patches and could see my bare scalp through the buzz cut. About a week later, I grabbed the shaving cream, got into the bathtub and shaved it all the way down to nothing. The feelings that accompanied that were…not as pleasant.
Now, I felt like a cancer patient. Now I knew everyone would be able to tell what was really going on with me. I felt sad and unattractive and sorry that I had only bought one wig that didn’t look very good.
Everytime I was in public I felt people were looking. I went to the grocery store and the park and I felt eyes drawn towards me. Or maybe I imagined them. I don’t know.
A little girl knelt down to pet my dog at the park and stared up at my bald head she could see under my hat from her position on the ground. I tried to not let it bother me.
I went to the movies with a scarf on and felt singled out. No one else had a scarf on.
If you have ever wanted to feel completely and utterly alone, cancer and its treatment is seriously the way to go.

In some ways, I feel blessed that I have always been something of a loner. I never had an enormous group of girlfriends. I have always known plenty of people, but only have had a couple close friends stick around throughout the years (and I’ve found a few great new friends along the way). But I have always liked my privacy and living alone. I lived by myself in a tiny studio in Brooklyn and really liked it and have lived alone ever since. I always felt that I’d survive just fine if I didn’t have a boyfriend. I never enjoyed talking on the phone for hours at a time. I’ve sometimes avoided crowds and parties and social events just because I didn’t feel like it or was socially anxious. I’ve always been comfortable doing things by myself. And when a new guy came into my life, I was not relieved, I was appreciative and had fun, for the most part…although, tragically, when you’re alone a lot of the time, you’ll occasionally choose the wrong people to spend your time with.
Other loners, in particular, have always been appealing to me. Sometimes this is not such a great idea. Sometimes it is. I suppose it just depends on the person and their particular situation.

But in any case, I am glad that I have had some time to myself over the years…its helped me be relatively okay with my current state of affairs. I do feel a bit left out, because its summertime and beautiful outside. I feel especially sad that I’m not at the beach every day like last summer, trying my hand at surfing again and basking in the delicious rays (hello, skin cancer!).
Or that I’m not sitting around at happy hour having margaritas in the sunshine. Or going out to concerts and events in town. I know that I’m self conscious and maybe just shouldn’t care so much. But its hard not to. Its hard to not feel like the only person around who looks like walking death.

I’ve acquired a few more wigs and cute scarves, so its made me a little more confident. I have my two summertime straw hats that I wear. And sometimes, if I’m brave enough, I’ll go out without anything.

Since chemo I’ve been feeling really run down. Before they administered it, they checked me out and my red blood count was down and they considered me anemic, so I received a shot to amp things up. The chemo itself was fairly easy on me and I went out for Indian food and wig shopping afterwards with my mom and boyfriend.

A week later, I went in for a check up and my white blood count had sunk dangerously low, which was somewhat expected because my doctor had decided to not do the Neulasta shot this time. My counts had been fairly high after the first chemo, and he thought maybe we could get by without it. Its hard to deal with the bone pain side effects that go along with it and if you can make it through without it and without your counts plummeting, then its great.
So we tried without this time and it obviously did not work out so well. Your normal blood count is usually somewhere between 4 and 10 and I was a little below 1. This is when you are classified neutropenic and are susceptible to viruses and other illnesses. They gave me an antibiotic to take for 10 days, and I have to be very careful with washing my hands and being in public and being around other sick people. I also shouldn’t eat raw fruits and veggies or anything that has bacteria that may be hard for my body to fight off.

I caught some kind of weird cold a couple days ago (after a visit to the movie theater) and my body’s temp had been near 100. I felt like complete dog shit and spent two days lying around my house. My appetite dropped off and all I wanted to do was sleep.
I have to call if it gets up around 101. But this morning I woke up feeling better and my temp was lower, so hopefully it is passing.

And in the wake of hearing bad news this week from a friend, I received some wonderful, happier news from a member of my family. Something I can’t reveal quite yet to the public, but will do in time/when I get permission. Its good to know that life can offer you blessings in times of grief and pain.
I’m hoping things keep looking up. I need some happiness and good times in my life.
I really, really do.

Round one.

I had my first chemo cocktail of Taxotere and Cytoxan on Monday. Its now Saturday.

The days between have been a mix of highs and lows, but all relatively “okay” (if “okay” means I have yet to go back to the doc or to the hospital). It’s hard to really come up with a completely accurate description of how I’ve been feeling. The day after, I didn’t notice much in the way of side effects…just a general overall fatigue and mild queasiness, which probably had something to do with my mental state as well as physical. I received my Neulasta shot (white blood cell booster) the day after the first chemo, which felt like a billion little fire ants pouring straight into my skin. I really love when nurses say “This may sting/burn a little”. It’s usually tolerable and I’ve become somewhat used to hearing that, even sadistically anticipating its arrival. So when the nurse told me, I was prepared and nonchalant, having been down this mildly uncomfortable road before. But no no no, mon ami, the shot was a raging, fiery inferno of discomfort. Only three more of those to go. Awesome.

For the next two days, I felt more or less like I’d been trampled on by a stampede of NYC bitches in high heels. Or hit by a CARTA bus. Or pummeled with bricks. I could muster enough energy to get up, eat a little food, go back to sleep until I felt the joint pain come back. And while I had heard Neulasta gave crippling bone pain and was terrified of it, maybe even more than the chemo, I have yet to experience “crippling”…but its most certainly there often, shooting shocking jolts and waves through my body to no end. I thought it would be more like those dense, throbbing “growing pains” I’d always had as a child/adolescent. But its really more like a shock. And it seems to come around more the more I walk, which sucks. Josh took me on a nice, long stroll around downtown as he is determined to keep me moving and in good health, and by the end of it, I made him go and get the car for me and I sat and waited. I just feel spent. Not tired as in bone tired, really, but a tired I have never felt before. I feel like I’m going on day 20 of no sleep. But when I do try to sleep, I find that I’m restless and can’t. Here is where my new BFF Ativan comes in…when I feel restless, it calms me. When I have a general daily feeling of “HOLY F*%$#*$% SHIT, I HAVE CANCER”, it gives me reassurance. When I can’t even enjoy a funny movie, it lets me relax enough to do so. Teetering on the edge of a panic attack every 5 minutes cannot be good for you. Therefore, the kind doctors prescribe this to almost all cancer patients undergoing chemo. They even give it to you via IV before your chemo drips even start.

The day of my first chemo, I was obviously very nervous and anxious. I woke up early and put on my Emla, a numbing cream that goes on top of your port, so you won’t feel it much when they access it (i.e. jab the very scary death needle in you). I was so nervous I almost forgot to eat something. There we were, driving to My First Chemo (which makes me laugh a little, saying that – doesn’t have quite the same ring to it as “My First Apartment”, or “My First Boyfriend” or “My First Credit Card”), and I was wolfing down yogurt like I was rushing to work, late as usual.

They took my vitals and led me into the chemo room. The chemo room is actually very nice. It has a lovely outside area to gaze at, with a lake and a fountain, and also has a few rocking chairs on the porch for visitors to sit in and read, etc. If it wasn’t so dang hot outside right now, I’d be sitting out there too, reading my books while my veins were being pumped with cancer killing toxins. I have yet to reconcile with the idea that the toxic shit they are putting in me is meant to KILL and DESTROY CANCER. It is proven to do so and I know this. But it’s hard to think of it also destroying the good stuff…the good things you need, the immune system that has protected you since birth from getting all kinds of diseases and illnesses. It’s unpleasant to think of that and so I choose not to…or, at least, not focus on it as much as I focus on the KILL and DESTROY part.

They took a vial of blood for the white blood cell count, which is something they’ll have to do before every infusion, to make sure my numbers are where they should be. If they dip too low, another course of action may be required or chemo may be delayed for a bit. It took about 45 minutes to run my blood cell count. When the results came out alright, they ran some saline through me, then the Ativan, then Taxotere, then Cytoxan. The chemo drugs take about an hour each to process. I kept looking up at the clear bags and the drip, wondering where the hell it was all going…how could all of that get inside of me? It was baffling and terrifying and made me feel like I was some sort of human sponge, absorbing and soaking up all that poisonous liquid. I wondered if I would roll out afterwards, like the chemo version of Violet Beauregarde.

While all of this was happening, I was reading trashy mags, talking to my mom and boyfriend, looking around at all the other patients receiving chemo. Only one was younger…and even she had to have been at least late 30’s. She was completely bald already and slept through most of her treatment. There was also another breast cancer patient I knew in there, who is a teacher of my niece and who I’d recently been introduced to. She is going through her second time with chemo (she’d already had it a couple years earlier). She is doing this after just having had almost the same surgery as me (her new tissue was taken from her stomach instead) and by my same plastic surgeon. She was more emotional than I was, and I could understand why. It is devastating to receive the same verdict: “You have cancer…AGAIN”…but, “You have cancer…AGAIN…AND its metastasized” is another story altogether. And one that I fear, everday.

Explaining mets (shorthand for metastatic cancer) to someone who doesn’t have cancer sometimes feels like explaining a James Joyce novel. Sometimes you cannot possibly find the words to describe the fear of waking up one day and discovering the cancer that originated in your breast has now spread to the chest wall, the lungs, the brain, the spine…it happens to so, so, so many that I have almost begun to anticipate and morbidly fantasize about my own demise, which is completely and utterly unhealthy and not recommended AT ALL. But it is hard to escape worrying about. Most cancers start small and work their way up to superstar celebrity status or they were discovered that way. All the drugs they give you, from hormonal to chemo…a lot of them really just put the cancer into a deep sleep. Sometimes they sleep for a very, very long time. Sometimes they tear the bedcovers off and want to jazzercize with your major organs. And no one knows…that’s the hard part. You don’t know. The doctors don’t know. They can do some pretty heavily researched guesswork…but ultimately…cancer is an unguarded disease. It does what it wants to and it leaves no stone unturned. It won’t let you off the hook. Ever.

So yes, you could walk out into the street, get hit by a bus, fall into a manhole or get attacked by a great white shark in the Great Barrier Reef…but it’s not the same as waking up everyday with the knowledge that you had cancer and it can come back whenever it wants to. It’s a daily fear, that flows in and out of my life like the tide. And it never truly leaves. I wish to God it would.
But then, I wouldn’t get to sit here and write this. And I wouldn’t get to think of all the things I would rather do, now, with my time…with this life. The only one I have. I can sink further and further down into the hole, and drown myself with sadness. Or I can put two feet in front of me and keep walking. That’s all I have left to do.

Chemo, chocolate and sushi wishes…

I can’t believe I haven’t posted anything since I was told I was going to have chemo.
I guess I’ve still been trying to get it through my brain for the past month…

It’s still a shock and there are days when I just cannot believe what’s about to happen to me. I’ve almost felt like I’ve been watching someone else’s life, in some overly dramatic tearjerker movie, cast with an obscure, B actress (I’d want Natasha Gregson Wagner or Shannyn Sossamon to play me) or maybe on a really bad Lifetime special on television. Its all very surreal and if there was ever a moment in my life where I felt I was having an out of body experience, now would be that moment.

Chemo starts on Monday. It was originally set for last Monday, but I came down with a little sickness mid week and called the doc the day of and asked if it was alright to come in still. He opted to reschedule, due to being immunocompromised. I was okay with it and didn’t want to risk making anything worse, but I also felt a little letdown. I had been amping myself up for it for weeks and to reschedule was just so…anticlimactic.
A cancer cohort said it was like climbing the stairs to the high dive only to be told the pool was closed. I agreed. I didn’t even know how I would be able to go through another week of pre-chemo jitters.
But here it is, Saturday…and I’m okay.

In the days since I was given the chemo verdict, I have…

-had surgery to get my chemo port (or portacatheter), which is a small half quarter sized device implanted subcutaneously in my upper chest with a tube running into a major vein in my neck. It helps to access the veins easier and is better than getting poked and prodded a million times in the arms which can lead to collapsed veins.

-started physical therapy

-shaved my head to a semi-mohawk

-tended to my boyfriend’s broken arm

-bought a bunch of raw foods cookbooks, decided its going to be a helluva lot harder to eat completely raw and decided “healthy” eating is what I will subscribe to (a.k.a. almost none/minimal meats, minimal dairy (not much cheese- no cow’s milk, only rice/almond/coconut milk and goats’ milk yogurt because I HAVE to have it – it’s delish!), lots of veggies and fruits, no alcohol (exceptions made for special occasions), no artificial anything, less sugar (agave nectar), more juicing, blending and detoxing! Phew.

-decided to NOT do the IVF/egg freezing. I went to the fertility specialist and we went over all my options and he basically told me I should probably do “at minimum” the egg freezing (as in, unfertilized eggs, not embryos), but that if I decided to not do it, the Lupron shot that I received in March (and again sometime this June) will provide some protection against infertility…so there’s still a 20-30% chance of being infertile and a 10% chance of permanent menopause. To some, those stats are high enough to really consider the egg freezing, but the time it would take to do all of this is alot and quite intense…it involves giving myself two different egg producing shots every day, going in to do bloodwork everyday and then doing the IVF surgery. This was to be done around the same time as my sister’s wedding and right before my other chemo port surgery. All in all, it was just too much for me to mentally deal with…and I’m prepared to deal with the future outcome of my decision, whatever it may be.

Physical therapy has been helpful. I have made improvements with my range of motion but still feel pretty stiff under each arm. My left arm (the cancer side) where they did the largest lymph nodes removal was measured at 63 degrees. Your normal arm range of motion should be at 180 degrees (meaning: bringing your arms up in a point above your head). So that kinda sucks. My right arm measured around 100. Better. But they only took a few nodes there.
So I’m working it out with daily exercises at home with a rope pulley, “walking” up the walls, and with the PT. I really want to start yoga as soon as physically possible and I think it will help get these areas moving and stretched out even more. Also am wanting to swim, but not sure how that will work with chemo and germs.
My breasts have been looking better. Cannot WAIT to do the revision stage 2 surgery where they take out these damn flaps and make me pretty again. Give me my nipples back damnit!

Ahhh chemo…the more I read about it, the less I love.
Did I ever picture myself at 29 as the bubble girl? Not even once.

But, I’m going to try and live my life as NORMALLY as possible…which means: I will still exercise. I will still go out of my house. I will still be social. I will still find humor in stupid stuff. I will still read books (that don’t pertain to breast cancer!). I will still take my dog on walks, go to the grocery store, pay my bills, do online shopping, ride my bike (looking for a new road bike – if anyone sees a good one on Craigslist, let me know). I will still cook and clean. I will still be fashionable with scarves and big sunglasses and red lipstick (channeling Jackie O). I will still want to know about the little dramas in everyone else’s life. I will still continue to NOT Twitter and update Facebook every hour. I will still watch bad reality television, laugh and swoon over Conan O’Brien and cry over America’s Got Talent. I will still eat chocolate but not sushi (raw fish + chemo = not wise…ugh). I will still count my blessings for making it this far and not ending up in the looney bin.
I will still be…me. Just the chemo version 1.0.

Really, thats all I can do. Just try to live as best as I can during all this crap. It’s going to suck many, many days. I know this. I’m not going to be Positive Polly about that. I know it will suck and I just can’t ignore the cold reality of it, as much as I try to put a brave face on. My body is going to have a titanic sized hangover for 3 months. And you know, I really do have to count my blessings that its ONLY 3 months. Some people do this for a lot longer. The HER2 women get Herceptin for a year or so. I know it is do-able, but damn… 3 months is quite enough for me, thank you.

I’m mostly scared of a few things. Here are some of those things, in order:

I’m scared I’m going to have a bad reaction to the drugs. My grandmother had a cardiac reaction to her chemo drugs and was rushed to the hospital. This happens ALL the time. I’m scared my little heart will freak the eff out as soon as the drugs pour through my veins. I am going to do some meditative, affirming thoughts during the first chemo. But I know, as soon as I sit down in the chair and they come at me with that scary, messed up looking needle to access my port…I know I will be pissing myself in fear. I don’t know how I’m going to get through that first visit…but my parents, my boyfriend, and hopefully others will be with me. I’m taking deep breaths now just typing this.

I’m also scared of my nails getting funky. I bought Elasto-gel hypothermia mitts and slippers for nail loss onycholysis. They are frozen gloves and slippers you wear during infusions that hold the chemo drugs at bay from getting into your nail beds and making them break/brittle/get dark/ooze/fall off/ewww/gross/yes, i said “fall off”.
Anyways, its been documented that these frozen mitts help a great deal with this. Something about the cold alleviates those side effects some. Same idea behind chewing ice when you’re getting infusions. It helps with avoiding mouth sores.

And not so lastly, I’m scared of scaring everyone else. I know I’m scared. But I don’t want to scare anyone else. I don’t want to terrify anyone with the way I look, the way I feel, the way I’m handling this. I am very conscious of how I’m displaying my emotions right now. I want to be the bravest person alive, but I know that I have so many deep fears with this…with the side effects, short and long term, with how my family and friends and boyfriend will view me and treat me from this time forward, with how I will be able to move forward and not have this be my LIFE. I don’t want to be any different, although I know this is an impossibility. How could I NOT be different after all this? How can I do anything the same as before? I can’t. And everyone around me should know this and know that I’m okay with it, really. Its taken some getting used to. But I will be okay, with all of it. So please treat me the same…as much as you can. It will help me remember that life does move on.

Ok folks, thats it. Wish me all the luck you can and send more good vibes out on Monday morning.
Maybe eat a piece of chocolate or sushi in my honor.
I’d like that.

XO,
L

P.S. I forgot to mention, my friend Stephanie, editor of the City Paper, interviewed me last week. They’ll be doing a feature on my story, how I’ve dealt with it via blogging and being a young woman. Pretty cool.
I have also been speaking with the director of the Young Survival Coalition in Atlanta to get an affiliate group started here. Something I’ve wanted to head up for a long time. So hopefully that will be in the works VERY soon. Now…we just need a space! Let me know if any of you have any ideas!

Saddle up!

Just told yesterday I’d be needing chemo and a bit shocked still.
I went to my two doctor’s appointments (alone) not expecting this news AT ALL.
My oncologist surgeon told me this, and right after I saw my plastic surgeon as well.

It was determined that because my case is so unique on so many levels, and because I am so young, they want to “cover all the bases”. Thought I’d escape once again, as initially my doctors seemed hesitant about doing the chemo, but after my case was presented to a board of oncs, it seemed chemo was decided to be of benefit to me after this recurrence on Tamoxifen.

So it will be:

Starting June 8th…Taxotere/Cytoxan
4 cycles every 3 weeks, lasting in total 12 weeks, till right after my 30th birthday in August.

I’ll be receiving also a number of other drugs to up my white blood cell count (Neulasta, for one) and keep me from getting some illness (pneumonia, leukemia, etc). Some of these drugs have awful side effects, along with the side effects of the actual chemo itself.

I’ll be having terrible bone pain, severe nausea, extreme fatigue, and will definitely, for certain, lose ALL my hair (and that goes for most every bit of hair on my body, not just the hair on my head)  by around day 14.

Some other strange side effects are gross, metal-like tastes in mouth (”like a robot took a shit in there” is what one breast cancer patient said), mouth sores, fingernails getting weird and looking like tree trunks, nose bleeding, bone loss, nerve damage (that pins and needles feeling x 10) …there’s a litany of side effects that I don’t want to get into. A lot of it bums me out so much I can’t bear to type it.
But you can go research for yourself here:

http://www.breastcancer.org/treatment/chemotherapy/side_effects.jsp

I was so stunned by hearing all this, that I finally processed it by my second doctor’s appointment (my plastic surgeon) and I choked up and started crying with him and his PA there. He asked me a question and I couldn’t answer for a minute. The PA was very sweet and tried to make me feel better and asked about my toenail polish color. “Creole Heat?”, (or something akin to that) she asked. I was confused at first, then she pointed to my toes and I laughed. I knew what she meant. OPI makes great nail polish colors and it always comes paired with funny, cute names. I didn’t remember the name of the nail polish I had on, but it broke the tension and I felt better for a minute. We talked about how manicures and pedicures were a guilty pleasure, and one I would do every week if I could, while my plastic doctor snipped away at the scabbing. I felt so grateful for her doing that.

What happens now…I just wait.

One thing that is a biggie is the fertility stuff, which as a woman (and a younger, fertile woman with no children at that), is another personal issue that is important to me.I have to go back to see my fertility specialist ASAP to get some eggs on ice. Or rather, embryos. The fertilized egg fares better in the thawing process. Something I learned during Breast Cancer, Round One. I have a boyfriend, not a husband, and so its a personal choice there as well. Along with everything else, it puts your relationships on fast forward. You have to make choices that affect the rest of your life. You have to evaluate what you want in your life more than what you might normally. It is unfortunate and it pisses me off that I can’t go through life naturally, making decisions with the ease of time, and not having to hurry through all of it.

I am looking forward to my sister’s wedding May 23rd. It is going to be an emotional time for me, for so many reasons. I am happy for her and I think it will be a beautiful occasion, but I’m a little nervous and dreading the idea of a ton of people giving me sympathetic hugs. I’m sometimes overwhelmed by the attention, and I hate that its because of this. A few years ago, when I was living in NYC, I had big plans for myself. I wanted positive attention for the job I had, the way I dressed, the funny stuff I said and did, who I dated…but now…its all about THIS. A disease. And a pretty lame one, at that. Breast cancer affects so many awesome, smart, sexy, independent, cool women that its ridiculous. It doesn’t deserve to inhabit the bodies of these women, who so eagerly want to live their lives to the fullest. It doesn’t deserve to be in any body, no matter the kind or type. Cancer can seriously just kiss my awesome ass. If it thinks its going to burden me forever, I’ve got news for it: You’re gonna lose this battle, asshole. Don’t get too comfortable.

I’ll keep you all updated on any new, important news. Lots of love, and thanks.
Lowry

P.S. I would also like to thank my friends Katie and Jen for asking http://www.simplydivinegarden.org to build a garden in my backyard. The sweet owner of this business came to my house today to take pics of my backyard and a garden (she’s thinking a combination of fresh veggies and flowers!) will be started sometime in June. I’m thrilled and eternally grateful for this gift and it will be lovely to sit outside and admire this while going through treatment.

I would also again like to thank Shawnte, who ran a 5k marathon in my honor in Los Angeles last weekend. She wore a silly shirt with my face on it and I hope the marathon gave her some hopeful feelings. Not everything in life is planned out and we all experience unexpected bumps in the road, no matter who you are. Its a blessing to be able to come through and start again, maybe even better off than you were to begin with. Love you, lady.

And as John Wayne says, “Courage is being scared to death, but saddling up anyway.”

the ground beef in tube sock effect.

I do and don’t have much to update on.
Mostly I just wanted to inform you all that I’m still alive, breathing, and usually kickin’ it at my crib all the livelong day. I’ve had a few nice outside days too though.

Its still a struggle. But its getting easier. For one, I don’t feel like I need someone by my side every hour of the day anymore. I was getting afraid that I was never going to be alone again. Ha.
Anyways, the healing is coming along…slowly. I have made some progress on my backside, but there are still plenty of stitches and tightness. But my front is just barely inching along. If I had to compare it to anything, I’d say it would feel and look almost as though you had stuffed some Playdoh into a tube sock (I almost said “ground beef in a tube sock” – now that would have made for an appetizing image…).

It just feels all out of order and not right.

I have since had ALL my drains removed and while this feels fantastic to not be dragging those nasty things around anymore, I did have to have some pressure from fluid that had built up on my breasts aspirated yesterday afternoon by my surgeon. And that leads me to say, to all you doctors and nurses and future doctors and nurses: Damn, I have some major respect for your line of work. I could have never done it. The whole blood and guts stuff…I mean, you are some seriously fearless people who deserve a lot of kudos for being able to handle so much. It hurts for me to even look at myself right now, and I just want to say that I think all of you are very brave, soulful, incredible people…or at least the ones I have encountered are.

I know I have to wait, wait some more, give it time, patience, time will settle things, etc. etc. etc., blah blah blah…but man, it is freaking hard to look in the mirror and see the stuff on my once (I thought, at least) pretty decent looking body. Its like swallowing the biggest, most enormous pill chock full of low self esteem. I know one day it will settle and look better…but it is hard right now, fresh out of surgery. I looked at a cute self portrait of myself during the last year I was living in NYC that I had sent off to a long distance boyfriend and almost (I repeat, almost) teared up. Its been difficult to remember those days of self assuredness. Its been hard getting back in touch with those feelings now. And it sure doesn’t help that its bikini season.

But time has produced some healing, and by some, I mean, in the way I can move around physically, not so much in my actual surgical areas…those are still under wraps and in moderate condition.I pretty much feel like I have an elephant (or an H bomb, you pick) strapped to the front of my chest, which has led me to hunch over for the past, oh, 3 weeks now, and has therefore led also to some serious shoulder issues as a result. Its all rather heavy and uncomfortable. I am still feeling protective of this area which makes it harder to straighten myself up properly. I have to remind myself that stretching out this area is probably a good thing and so I’ll lean backwards every so often to help counteract this feeling.

I just feel awkward and not entirely self-possessed at the moment. You hand your body off to doctors, who are hopefully adept at molding you into something halfway decent in the end, but it is still never what you HAD to begin with. I have always felt good about myself, always felt I could wear most anything, attract a good portion of the opposite sex. But right now, it is hard to look in the mirror and find the outside physical beauty. Which is why, I try and am trying, to find some inner.

When your body is mutilated, you’re almost forced to look at your other, deeper attributes that you often forget about. I forget that I am a kind and caring person. I am loyal and fierce and determined. I love immensely and forever (if I ever loved you, chances are, I will always hold love for you). I give without a thought to those I care for. I am thoughtful and considerate and strong. I have a great passion for laughing hard and enjoying silly moments with my dear friends. I am kinda funny and loopy and scatter-brained but also quietly driven and mindful. I am creative and enjoy creative people and creative life. I recycle my junk mail. Shit, I have a whole laundry list of good things if I think about it hard enough! Which, I usually don’t. Until right now.

So, there it is. And I’m thankful for the continued enlightenment, on so many levels. As much pain and hurt and sorrow as this has caused, its been a powerful motivational tool. And this time, I won’t let it dull or fall away so easily from my heart. After my lumpectomy, I returned to a very, very, very normal life. I almost completely ignored what had happened to me, because I so desperately wanted to be “normal” again.

After all of this, I have made promises to myself, which I won’t reveal to everyone here…but just know, that I am looking out for myself and taking care of myself in ways I had not before, even if its not outwardly visible yet. And like our dear President said, not everything can and will change overnight, but much will be taken into consideration from this time forward and much will be improved upon in coming years.I believe in the ripple effect. You’re all going to benefit in some way.

So for my health and wellness, and for yours, let the healing begin…

Finding peace in riotous and endless waves of transformation…

Did you think I’d deserted you?

Well I haven’t…just am finally able to get my thoughts and energy together on the same page, enough to sit here and type out what has been happening the past two weeks.
Firstly, I am feeling pretty good right now.
Good because a) I’m being fed a nice dose of feel good medication (Vicodin, Valium, etc) every 4 hours or so and b) well…just because I’m feeling good. I’ve been moving around fairly easily. So easily that I think its freaking out some of my friends and family. I have discovered that I maybe perhaps have some super quality quick recovery powers.
But thats not to say I haven’t had setbacks.

I rolled into the hospital early Tuesday the 14th morning (6 AM to be exact) and the hospital was eerily quiet. Myself, my boyfriend and my family were only a few of the people in the waiting area before I was taken back. My mom gave me her worry stone to rub on, but I felt strangely calm…more calm than I thought I would. The nurse came in to help me change into my lovely and so very sexy white thigh high TED anti-embolism stockings with the massaging leg warmers attached that keep you from getting blood clots, then my standard, yet glamorous hospital gown and the ever so fashionable blue shower cap (which I left off till they put me under).  They stuck an IV in my arm, gave me warm and fuzzy Versed to relax me, then I said so long, farewell, auf wiedersehen, goodnight to my family and boyfriend and they wheeled me away.

The surgery lasted 10 hours. 10 stinking hours. With a tube rammed down my throat. When I woke up, the first thing I wanted and asked my surgeon for was a big icy Coke, as my throat felt like it had been rubbed down completely raw with steel wool and I was as parched and dry mouthed and thirsty as I have ever felt in my entire life.
I was in recovery for another hour and a half. This was all pretty much a blur…you’ll have to excuse if I have forgotten some of the details, but this is what I have heard from the ones who witnessed it all.
Apparently when I came out, my face was so swollen and stretched out, I looked something very similar to a pancake.
I’m not sure if I spoke much, or what I said, or what happened during the first 24 hours, given that I was drugged out of my mind. I have vague recollections of Josh watching the Colbert Report the first night I was in my hospital room. I knew the voice. I couldn’t laugh or tell him to turn the volume down, which for some reason was somehow too loud for me even though it probably was on the lowest volume possible. Because of the tube that was in my throat for so long, I had a terrible time speaking. It felt awful, a constant feeling of needing to clear my throat that I couldn’t manage to do.

But the next couple of nights consisted of me being more aware of what was going on around me…like  the nurses coming in almost every hour to check on my new breast flaps, putting blue ultrasound gel on me and then moving around a  little doppler ultrasound machine that made a noise when it detected the newly attached blood vessels and monitored their activity. It was pretty wild. One vessel sounded like the ocean, one sounded like a thumping. But both noises were necessary for them to hear so they could leave me alone for another hour or so.

They would also empty my breast and hip drains. I was given IV drugs for the first night, then they wanted to switch me off to pills the next day. I was first given Percoset, which made me extremely ill and nauseous and could barely hold down ice chips or Saltines.
I couldn’t eat or drink a thing without wanting to be sick. So they switched me to Vicodin, and an anti-nausea medication which made enormous improvements in my drinking/eating abilities.
They would also come in and administer blood thinning shots in my legs or stomach. 

Josh stayed with me at night. It was reassuring to have him there. My Mom came and stayed with me through the day mostly. The worst day of all was getting out of bed for the first time. And for some reason, I was really nervous about having my catheter taken out. I don’t know why. It wasn’t really that horrible. Having a catheter in your body is just one of those weird uncomfortable icky things that totally freaks me out, the way some people are totally freaked by needles (my boyfriend).

I was a bit afraid to see what had happened to my breasts and body. In a strange way, I wasn’t feeling the same sort of pain the way I felt with my lumpectomy. My chest feels tight, lumpy, like they are parts too high or too low. And there is a flap of new skin that is unfamiliar and weird to look at. The skin flap used for the breast mound is my own from the gluteal area and was sutured all into place. I don’t want to gross anybody out, but because I opted for nipple sparing (meaning I am using my own nipples in the reconstruction process), they are a bit torn up at the moment, which apparently, like everything else, will heal and get back to normal in time. I’m scabbed and still bleeding some through my compression garment.

Down below, its another story. Since they harvested my upper gluteal tissue, my butt, which was once quite round and robust is now, well….vaguely reminiscent of my prepubescent years. Its something thats both weird and kind of funny. I kind of have to just wait for time to tell, after I’ve healed some, on whether or not I will need to do anything fix that part of me or not (a lift perhaps…no one wants a flat bootay). But it is filling in quite a bit more now that I’ve been walking more and eating more….so I think it might actually look quite nice after awhile.

Since I came home on Saturday, I’ve been feeling much better. Its always nice to be in your own home, with your own stuff, your own bedsheets, your own tv.

Its been hard to sleep at night super comfortably, but the drugs do help.  Every morning and night, I have to pour out and measure my drains (a task I’ve let my nurse Mom help me with) and every day there is less and less fluid coming out of me. Its not very pretty and kind of reminds me of  pink Kool Aid (something pleasant to think about next time you drink that stuff). Apparently, when a part of your body gets hacked into, its automatic response is to fill it with fluid. But this is stuff they don’t want or need in me so they’re trying to get most of it out before removing the drains.

After one week of having them in, I had two of my breast drains removed. I was very, very, very scared that it would hurt terribly but I seriously didn’t feel much of anything, besides a really creepy, slithering, snake-like movement coming out. These drains have been such a PAIN IN THE ASS that I felt so much relief at just having the two removed. I can’t even tell you how good I felt afterwards. I am really more scared of the two hip drains coming out this Thursday as they have been hurting like a bitch whenever I touch them, move them, etc.

So…this is pretty much what has happened thus far.

Oh and I’ve had four showers so far and I got sick almost after every one because I overheated myself, because I love hot water and a lukewarm shower is apparently only what my body can handle at present. I have to keep my bra on and do the best I can with styling post shower (you must all forgive me for having somewhat haggard hair right now- I should really go get a blowout this week at the salon).

I took  my first shower by myself  (without the help of my Mom washing my hair and lifting the bottles of heavy shampoos/conditioners/whatever else product crap I have) the other day and it was a reasonably comfortable experience.

I’m still so swollen and sore under my arms where they did the lymph node dissection from the inside out (by the way, the path results came back NEGATIVE for any cancerous nodes, and my other breast was clean too, yay!).  Its a strange feeling knowing that I had preventative surgery on a completely healthy breast. I know in my heart I have done the right thing with the right people and ultimately I will find happiness with the end result…but this reconstructive process is all going to take so much time…more than I think I originally anticipated.

I honestly have no idea when I will be able to return to a job where my function was to use my arms and lift and cut hair and blowdry for most of the day. I may not be able to. I wish I knew now where I will be in 3 or 4 or 5 months.

I have being reading “Eat, Pray, Love” by Elizabeth Gilbert.
One line I have loved and read over and over again is “one must always be prepared for riotous and endless waves of transformation.”
I highly recommend reading this book to anyone going through any powerful transformative change, or anyone interested in healing mind, body and spirit.

I have been contemplating a long yoga retreat after I’m healed…some kind of healing journey somewhere. Not sure where as yet. But I have been thinking long and hard about where I am headed after all of this.
Its been a huge transformation for me, in more than a few ways.
I’m staying in the present as much as I can, but also thinking so much right now about what will my life be like in 5, 10, 15 years…and what I would like it to be like. Where I would like to be mentally and emotionally.

I believe everyone should have a manta when under extreme duress….
I find myself repeating “peace, peace, peace” to myself, in my mind. For whatever reason it calms me whenever I find myself getting worked up.
Its what I want most, right now, and for the near and far off future. And, I know I have to find it in my own way, regardless of what people tell me I need to or should do. It will all come, when its time.