Fiver

I will reach the five year mark on July 1, 2016. That’s supposed to mean something. That I’m in the clear. That I’ve made it to the point where a recurrence is less likely. For me it says: it’s time to stop whining. It’s like moaning about a car accident for five years, move on. I would like to argue that I haven’t been moaning too loud. It’s been more like a constant internal keening that sometimes gets so loud that I can’t hear anything else. Sometimes it’s a buzzing I can almost ignore, but it’s still there. My grieving has persisted for five years, whether I let you see it, whether you noticed, whether I acknowledged it. It has been there. I’m just reaching (fingers crossed) the one year mark of no hospital stays or leave of absences from work. One year in four that my health was stable. How do you celebrate four years, when you are happy for a year in the clear. How do you celebrate five years when you are worried about what will happen in the next fifty.

I keep grappling with what five years really means. Am I going to wake up when it’s five years and one day, and be different. No. I will still be me. My past will not have changed. My future will remain unclear. Is it a day that should be celebrated? A day to be ignored? Or a day that should be acknowledged, and nothing more. I think it will be a day to grieve. For a loss of innocence. For five years of hardship. For pain. For sadness. For scars. For depression. For constant fear. For self-loathing. For helplessness. For alienation. For lost time.

And on July 2nd, I will look back on the last five years, and say you are still here. You can survive today.

It’s not a battle. It’s a Saga.

The wonderful Donna Wilson shared these words with me one day when she asked how I was and got a weary, angry defeated response that was marked with a wavering voice and a slow cascade of tears.  I thought I was done. I thought it was over. I thought I could put breast cancer behind me. I kept repeating to myself “it happened.” Yes, it may happen again, but it was in the past and not going to continue to attack me and wear me down. Oh, how wrong I was. 

I started this blog to process. To talk about what was going on with me. By sharing it, it never became a silent burden that I  carried alone. My friends and family knew how I was feeling, and their support and concern made it easier for me to make it to the other side. Things got better, but they didn’t get easier. Although it was clear that things were still going on, I wasn’t sharing at the same level. Which means that I was holding more inside, and day by day carrying a bigger burden. I don’t like to talk about this subject, and I gloss over details and say “I am fine. I will be okay.” But that’s not entirely true.  And I need to learn to be okay talking and thinking about breast cancer, because it’s not going anywhere. So I will begin again. Some of this will be about doctor’s appointments, tests, and my health. But a lot of it will be about the emotional effects of cancer. The fears. The worries. The paranoia. Coping. The social aspect of being a young survivor. Some posts will be about things that happened in the two years since I stopped blogging, and unfortunately I am sure there will be many new things to discuss as well. Hopefully by sharing and forcing myself to not only think about these things, but articulate them – I will be better able to manage them. By shining a light on my fears, hopefully they will seem less scary.

 

I hope these things aren’t too personal. But I wish someone had told shared these things with me. They only said it gets better and you move on. I thought that meant it goes away, but the saga continues. 

Signing Off

It’s been over a month since my final round of chemo. I am feeling somewhat normal again (even made it back to the gym!). And now I just have to finish out the reconstruction portion of all of this. And since my PS described the surgery as a ‘drive-thru’ procedure, I am not expecting it to be that bad. I started this blog to help me process, and I think it has more than served its purpose. It’s helped me get all the crazy thoughts out of my head, and it has allowed me to let you all in without ever uttering a word. Now my big goal is just to get back to normal. I have largely stopped thinking about bc, and I hardly talk about it either. So, I think it’s time to stop blogging. Yes, I know. My rants will be missed. My as yet unnamed breasts will step back from the spotlight and take their place where they belong – inside my clothes. I am sure I’ll still have stuff I occasionally need to process, but I’ll handle it like normal people and make the person that sits next to me at work deal with me. Co-workers are great; they have to be PC, and they generally pretend to like you no matter what. But since this is (hopefully) my last post, I plan to make the most of it and talk about me!

I think I am having more hot flashes. Or I am a hypochondriac and that thinks they’re having more hot flashes because of the Tamoxifen (that pill I get to take every day for five years). Initially, I was only having one or two during the day at work. Today I had 3 before 10AM. And they are hotter, I have left the realm of uncomfortably warm and moved to ‘post 5K when the heat index is 100+.’ I am not sure how long I should wait until I call my doctor and request a script. I kind of already requested one at our last post-chemo meeting, but she just told me to wait and see for a bit longer…. so irritating. My feelings about doctors and nurses are kind of on par with how the world feels about lawyers. Anywho, life is very warm and all sweaters and sweater tights are now considered hostile garments.

My body has a slow bounce back. One Saturday, I did about an hour and 15 min of exercise over the course of the day. Sunday I was so exhausted that I had to give myself a stern lecture to get out of bed by 3PM. I normally sleep an insane amount for the fun of it; but rarely I am really and truly tired after 12+ hours of sleep. And my body remains sore days after the exercise that caused it. My calves have been sore for about a week now. My arm is getting better, because I finally gave in to missing more work and I go to Physical Therapy once a week. I still seem to be gaining weight. There is some hair on my head, but they’re stragglers as opposed to the full brigade. I go to work without a wig about one day a week. And absolutely no one says anything. I think that’s odd. I would say something, but I also frequently tell my co-workers all the reasons their outfits don’t match and the like. And if for no other reason, that alone should make them call me out for my changed appearance. “Hey Carmen, the stripes on that hat clash with the pattern on your cardigan.” I haven’t become any friendlier. On the way to a dr’s appt a few weeks ago, this random man on the street looked at me and said “smile, it’s not that bad.” I looked at him and said “it is” and kept walking.

But right now I am hyped up on holiday cheer, and though I don’t expect for the mood to last for weeks to come, I feel good about whatever lies ahead.

101.5

That’s not my favorite radio station.  That was my temperature yesterday.  The sore throat I had this past weekend was a full-fledged ‘cold’ by Tuesday.  I left work after two hours.  I felt dizzy/faint and generally unwell – and I just started putting my papers away at 1030 when I realized it was ridiculous for me to try to work through feeling like that.  The next day I had a scheduled doctor’s appointment with my oncologist.  She started throwing out words like neutrapenic(??), and sent me to get a chest x-ray.  The notation on the script for the x-ray said “to rule out pneumonia.”   And she said she thought the swelling on my arm was lymphedema.  It looks like I am back to bad news doctors appointments. I called her yesterday afternoon to find out the test results and let her know that my temp had climbed from 99.5 (which consequently is a radio station I like) to 101.5.  Fortunately, my white blood cells were high (so I’m either fighting infection or the post-chemo wbc booster shot is working well) and the chest x-ray was negative.  She said that if my white blood count had been low and I had that high a temp, she would have admitted me.  That was rather scary to hear; imagine me trying to cab it over to the hospital by myself – yikes for so many reasons.  Yay for no hospital stays!  But I still need to be healthy before my next chemo round (1 week from today).  I can’t partake of a bunch of bad chemicals on a weakened body.  So I am taking it super easy and trying to be super healthy, so I can bolster my body up for its next beating.  No work.  No outings.  Lots of bedtime, soup, and juice.  It’s working so far; today my temp has only been in the 99s.  I refuse to make this chemo stuff last any longer than it has to, so I am determined to feel great by next week.

I’m not crazy. I’m just a little unwell.

For the past several months, I have surprised myself with how positive I have been.  I am normally a Debbie Downer – a Cynical Carmen.  And I am not saying I have been Suzy Sunshine all the time lately, but much of my attitude and responses to all this bc stuff have been fairly positive.  That is so over. The past few weeks have been positively f-ing awful. And I have been trying really hard not to complain to everyone I talk to.  I tell most people that I feel bad, I am tired of it all and then change the subject.  What I really want to do is burst into tears and scream ‘I can’t do this anymore!”  Unfortunately, I have done just that to both my sisters and forced them to listen to me sob over the phone.  And everyone says “It’s almost over.  You can make it.”  But it feels like it has been forever.  I am always unwell, and random symptoms are always popping up.  Like right now, my left upper lift is swollen, both my lips are numb, my left hand is swollen, both of my hands hurt and it’s painful to use them for anything that requires any level of force (texting, putting on my pants, opening a jar, writing -typing actually doesn’t hurt), my throat is sore, and my arm itches at the IV site.  That’s just today.  Yesterday was all of that and extremely painful chest pains.  I honestly feel like I am being tortured; as if all this is being done to drive me insane.  And the fatigue….imagine waking up feeling like you already worked an 18 hour day.  And no matter how much you sleep, it doesn’t go away.  It’s depressing.  Last Monday, I tried to jog a few yards to catch the elevator and realized that I didn’t have quite enough energy for anything more than a walk.  I went to the Jay-Z/Kanye concert this week, and it was very very worth it, but it hurt to stand up.  I was exhausted before the show began and had several hot flashes throughout.  It’s cool that I felt well enough to go and all, but I am angry that I had to be that person sitting down at a concert. I am angry a lot about breast cancer.  I am angry I had to lose my hair.  I am angry that I don’t have my own homegrown breasts.  I am very very very angry that every three weeks I have to get horrible nasty chemicals pumped through my body.  I am angry that I have to go through feeling this awful in the mere hope that it’s killing some random rogue cancer cells.  It just seems really backwards that it’s 2011 and the best idea they have to is to give you a toxic cocktail that kills everything in your body. I am angry that I get sad every time I hear that another person died from cancer.  I don’t think this is what will kill me, but when I hear that it reminds me that I could.  I feel so defeated.  I am mentally and physically exhausted.  I know the end of feeling crappy is supposedly close, but every day between now and then is going to be a trial.

So, if you chat with me, I’ll probably tell you I feel bad, gloss over the details and change the subject.  But I am big on keeping it real; and I am very much at the end of my rope with all this. And today, I am not going to apologize for the whiny/complaining tone of this post.  It’s how I feel.  The random thinking of you cards, texts, and emails have been super helpful the past couple of weeks – so thank you all for the continued support.  And I am going back to my parent’s house for over a week right after round 4, so hopefully being pampered in my childhood home during the worst and final round will make it not so bad.  In closing, I hate chemo.

News Flash: Hot Flash!

I have somewhat calmed down about the water retention/swelling issue and the fact that chemo is largely interrupting my life. But the third round of chemo came with a new side effect. Shutting down my period? No. That was supposed to happen a long time ago, but my female organs seem to want to keep working. However, they aren’t in sync, because I am officially having hot flashes. Supposedly, chemo shuts down your ovaries and pushes you into a ‘temporary’ early menopause. But right now I seem to be getting both sides of the coin. Friday night, I woke up every hour on the hour and had to pee and almost as soon as I awoke a hot flash started. Now I won’t complain too much, as I think these HFs are on the easy side of what I’ve heard they could be. I don’t feel like I am being pushed into a furnace or anything. It starts out as heat that radiates from the center of of my body to my head and legs and gets warm enough for me to break out into small sweat and just as I get all hot…it melts away and my temperature is back to normal. So a lot of throwing off the covers, fanning myself, then snuggling back under the blankets. And during the day, a bit of shedding of whatever I can for a moment and then putting it back on. This weekend was the first time I’ve had so many ‘definite’ hot flashes so consistently, and I am worried about next week at work. I don’t wear my wig around my apartment, but with the colder weather I have been sitting around in a beanie because my head was cold. And that most definitely comes off during a flash. But at work….I can’t really snatch off my wig and I am going to have to pre-plan any layering I do. Sigh, I guess this isn’t the biggest worry to come up with all of this, but it is the latest. The rest of Chemo Rd Three is okay. I am much more tired. Not sleepy- just zero energy. Not looking fwd to a full work week, but hopefully I’ll suck it up and just go home when I am “done.” One more round to go!

Skinny Little Vain Girl Feels Fat

I just had to cancel my already postponed birthday night out.  I could cry – wait – I already have – multiple times since realizing I couldn’t go out.  This really sucks.  This is the weekend before my next round of chemo – the weekend where I have the most energy.  And I started out Monday of this week feeling GREAT.  Tuesday was good.  Wednesday was okay.  And Thursday was a killer.  I was hoping I could slog through today, come home take a nap, and then head out.  And I probably could have, but last night I discovered my newest side effect.  Water retention and very swollen legs and ankles.  My calves almost look like they could pop and I have cankles.  And I look like I have a baby bump.  I would have gone out with the faux baby bump, sure I would have felt fat but whatever.  However, spending all night dancing on swollen legs and feet….kind of a really bad idea.  The good news is the swelling goes down if I keep my legs up, so it’s a manageable side effect.  And I am sooooooooo tired.  You couldn’t pay me to walk to the grocery store right now.  I haven’t been out in almost three months!!! And since the tiredness is only going to get worse, I might as well resign myself to kissing going out in 2011 again goodbye. Sigh.

I wanted to post last night because I was basically flipping out about gaining weight.  I now weight the most I’ve weighed in the past three years.  And besides having a high metabolism, I can usually lose weight really quickly when I want to.  But yesterday, I realized that my normal methods of increasing exercise and not eating like a lumberjack (and if you’ve ever ate with me, you know I can put some food away!) were having no effects.  I was actually still gaining weight.  My work pants are starting to feel tight.  WTF!?!?!?!  I know  they said this might happen, but I assumed I could fight it with a healthy lifestyle.  And though I now think most of it is water weight, it still REALLY bothers me.  My scale shows % of water, and that number has been consistently higher.  And the scary thing is that my fat percentage is actually in the underweight zone lately.  So last night I started flipping out, because perhaps underneath all this water weight, I was starving myself.  Then I got an additional 120mL fill to each of my expanders this week, so perhaps the increased water weight was the additional 240mL of saline that was inserted into my chest.  Frankly, I have no idea what is going on with my body, and that’s the root of my worry.  I don’t know my body, and have no idea what to do about it.  The answer is probably to just wait until all the chemo is done and then resume my normal habits.  But this is all frustrating has hell – I can’t go party, my legs are swollen, I have a faux baby bump, I have no hair, acne/breakouts, I tire easily, and my scale makes me feel fat (normally my scale and I are on excellent terms).  I am whining; I know.  So to end on a positive.  My breasts are bigger this week!  That was actually really exciting this week. I think they are actually the size they were before the surgery again, but it’s nice to have something there again.  And! They are going to be even bigger.  Feels a little shallow to be this excited about them, but I’ll take my kicks where I can.

Two Down – Two to Go

It’s the Monday after Chemo Round 2, and I feel good!  As in, I actually feel normal.  I’ve had Chipotle the past two days (though I had to leave off the spicy salsa and the fajita veggies), but my stomach was completely able to tolerate it.  I am thinking about making it a 3 day pattern and getting it for lunch today.  I hope I am in the clear for Round 2, and I don’t have those Neulasta pains sneaking in tonight/tomorrow.  This round was very much like the first, except that I was much more tired.  Not sleepy, but my body just felt like it had already done all it wanted to do.  Oh and there was a little bit of tearful drama at the infusion room.  One of the pre-chemo drugs caused an allergic reaction.  At first, my arm just hurt a little at the site of the IV, then I started to see a circular area turn darker brown on my on arm.  Then I noticed pain radiating up my arm in a path I assumed was the path of my vein.  I kept asking my sister if she saw the shading on my arm that I saw.  I was paranoid that I was overreacting.  But I finally called the nurse over (one had already came and gave me a heating pack for my arm – but the discoloration and pain had gone beyond the initial irritation she tried to fix).  She fiddled with the IV a few times and kept asking if it was better now.  I wanted to be like “NO!” But part of me wanted to believe that whatever she was doing was making it better, so I felt bad and kept saying “no, not really, it still hurts.”  At this point my arm is also turning red.  So she decides to remove the IV to another spot on my arm.  At which point, I start crying.  My arm hurts, I have to ruin yet another vein in one day, and being in the infusion room is a glaring reminder that I have/had cancer.  It’s been really easy to make cancer seem like a bug bite you got at a bbq several weeks ago, when you feel fine and have no obvious signs of illness.  But getting chemo reminds you of it all.  And my little allergic reaction just kicked my bucket of anxiety over.  I tried really hard not to make eye contact with my sister during this episode, can’t have two Alexander girls bawling in the infusion room…but she may have shed some tears anyway.  I guess the rest of chemo day was pretty uneventful…I saw this really old woman in a pair of 4 in peeptoe platform lace-up booties with pink socks and a calf length black skirt.  She was rockin’ it!  I was wearing my Uggs, a sweater, and a pink and white crocheted cap over my wig – not nearly as cute.  But I am always clearly the youngest person in the room…I wonder if that makes other people sad.

So I am clearly the girl that will be wearing her wig every single day every where she goes.  I haven’t even mildly considered walking around publicly in just a hat or scarf.  But Friday, I kind of got caught out there.  I’d went to work, got my follow-up shot, ran an errand and came home with my sister.  I had already showered and napped, when we decided we’d get some laundry started.  In all of the hullabaloo, I left to refill my laundry card alone – I walked down the hall and downstairs through the lobby without my wig.  Now I shaved my head, but left some hair as a short covering- so I am still not completely bald.  But my hair is still falling out..so my  scalp looks like that of a mangy dog.  And I walked past a bunch of people nodding and smiling, like all was normal.  It didn’t hit me until I was getting out of the elevator from chatting with this excessively friendly man and I was wondering why he was so nice….then I remembered my hair!  I asked my sister how she could just let me leave like that!?!  I am getting used to the no-hair look around my apt, but I hate it.  I haven’t forgotten my wig since, but I think it will be a long time before anyone sees me on the street without a wig!  I am still on the fence about a delayed bday party.  I want to go out, but I think I still feel really awkward getting back into the normal swing of things.  What if some guy tries to run his fingers through my hair and my wig comes off!  Or I realize I only have the stamina to dance for about an hour.  Or I have a Janet Jackson wardrobe malfunction and stun the crowd with the lack of a naturally appearing body.  Ugh, I need to make a decision today.

Small Chemo Update

The doctor’s office called this morning and I am all set to start Chemotherapy Thursday, September 15.  My brother is all set with a flight to be my chemo-companion.  I feel excited which is really weird.  I don’t want to do chemo, but I feel like I’m getting close to getting through with this so I am excited to have no more question marks and have a clearly defined end date.

So it’s countdown time – let’s hope I have mild side effects.

On a Wig Hunt

Saturday was supposed to be the preliminary wig scouting expedition with my mom.  But I woke up with that feeling that you have Sunday afternoon or on Monday mornings.  Dread.  You just don’t want to go.  I was not at all excited about going and was tempted to cancel the whole thing.  After waking up, I sat next to my mom and stared at her until she woke up.  She took one look at my face and said “what’s wrong?”  “I don’t want to go wig shopping,” I replied.

Two and half hours later we were making our way out of the Wheaton metro and headed towards Amy’s of Denmark.  This wig shop is the most highly rated in the area from doctor’s offices to support groups to magazines. So I figured we’d start there.  My first impression when we walked in was that there were not that many wigs.  No one immediately acknowledged us, but after a while my mom sidled over the lady at the front desk to ask how things worked.  All the human hair wigs were $1600 and the synthetics started at $225.  The human hair wigs didn’t look like too much on the displays, but I saw several synthetics that I thought would be promising.  After browsing for awhile, we sat and waited to begin our consultation.  The first wig I tried on looked almost exactly like my hair when it’s straightened, but it was slightly longer.  I am sure it wasn’t a Black person’s hair, but it was so coarse that it looked way more realistic than most of the other wigs.  I liked it, but if you have to have a wig – why not look much better than you already look.  So I began looking for an upgrade on something realistic.  All the short styles made me look like an old lady newscaster or politician.  Some of the chin-length synthetics looked nice, but it was super obvious that it was a wig.  And there was one really amazing black human hair wig, and although it was real – it was super obvious hair like that would never grow out of my head.  But………finally Tina found a wig made from the same hair as the first realistic (in comparison to my actual hair) human hair wig that I tried on, only this one was much longer.  I LOVED it.  It looked like my hair only much thicker and much much longer.  Like my hair on growth hormones.  And since it’s human hair, I had the possibility to continually cut it (gradually) and style it.  I could roll it, flat iron it, wash it, part it in multiple places and wear a low pony tail. But it’s SIXTEEN HUNDRED DOLLARS!?!?!  I think my insurance covers up to $500, but that’s still ELEVEN HUNDRED DOLLARS!?!?!?!  However, human hair wigs are one of a kind, you can’t order a certain model repeatedly (or at least not at this place) so if you see something you think you really like then you have to claim it then.  This was the first wig store I had walked into and the prices were hard to accept, but I didn’t want to regret not getting the wig that I really liked.  I’ve made that mistake before with clothes and shoes that I thought I would be able to purchase later, and still mourn my inaction.  So I put down a deposit on this wig to set it aside from any other interested customers.  I still need to keep shopping and trying on wigs to make sure I really really want to pay that much and that I much prefer it to anything else I see.  My mom and I went to one other wig store that day (after a brief stop at the mall in Wheaton – it’s a cold day in July when a woman in my family walks past a mall without going in).  The second place was called Esther’s and had Human hair wigs for $40-$80 and synthetics for $40 and under.  Also, the selection was endless.  Every length, color, and style.  I was confused, what actually made the Amy of Denmark wigs so much better/expensive.  I was also exhausted and hungry.  And by this point my mom was carrying my purse for me. Both my shoulders were aching, and I just wanted to sit down for a while.  So I didn’t try on any wigs at Esther’s.  I guess I need to continue shopping for wigs to see if I can find something for $40 that I like.  But I have decided that if I give up shopping for shoes and clothes for the remainder of 2011, I will likely have saved enough fun $$ to pay for the wig.  Okay, I know it sounds crazy to think I could really save that much money by not shopping….but I have done it before and noticed that it makes a huge impact on my bank account.  Besides I have a sh!t ton of clothes and shoes already and we’re entering a new season, which means a bunch of clothes I haven’t worn in months.  So wig shopping shall continue, but there’s a plan in place  if I decide on my first love wig (pic below).  Also the cold cap therapy where you don’t lose your hair…. $500 a month to rent (3 month treatment = $1500 min) with an 80% success rate….. That’s too much money and it’s not a guarantee.  It’s close to the cost of the wig (except insurance should cover some of a wig – and I can’t find that they would cover anything for the cold cap).  I wish I could say I would be fine being bald, but I can’t predict the future.

In chemotherapy news: After visiting the Chemo Room at GW,  I decided that I preferred it to the room at Dr. S’s.  And that’s how I made my oncologist decision and chose Dr. K.  Dr. B (my surgeon) cleared me for chemo during our Friday appointment.  I mulled it over all weekend, to make sure I was okay with it.  But eventually decided it would be best to start as soon as possible – so I could finish as soon as possible!  And if all works out that would mean starting this Thursday Sept 15.  I am still waiting for Dr. K’s office to confirm that they can fit me into the Thursday schedule after a day of phone tag.  But hopefully, they can and everything will work out for my brother to fly in to go with me.  The only down side of starting so suddenly is that it gives my family members no time to buy plane tickets or arrange their work schedules.  And at first, I was all for waiting until next week, when my mom could come back to DC, however, my anxiety level is ridiculous.  I can hardly wait til Thursday and waiting until next week just seems impossible.  And as much as I would prefer to have a parent or sibling with me, I think I am willing to do it alone if I can just get it started this week. (I may ask some locals to stop by post-treatment if I go that route, so not completely alone).  I did my chemo-grocery run today with my mom and tried to figure out what bland foods are (like I ever eat anything bland!) and bought other things recommended to have handy post-treatment.  Next, on my list is a Target run of the same variety but without the food theme.  I will post again if I get a date, and I’ll likely be sending out an email to my DC locals about wig shopping – probably for the week after I get chemo or this weekend if I end up having to wait until next week.  So stay tuned for that.  And I’ve also been a lot less talkative/communicative lately, mainly because I find this subject exhausting and depressing at the moment.  So sorry to anyone that’s noticed no reply to an email, text, voicemail or phone call.  It’s not personal, and I’ll do better eventually!  But please let me know any thoughts on bland foods, wigs, cost of wigs, or if you think the raw/unstyled/uncut wig in the picture looks okay.

Stop 1 on the Wig Hunt

I doubt chemo will be fun, but if it’s horrible, I am ready to know the extent of its horribleness.  I feel like a Gladiator in the arena just waiting to see what surprise is in store for the fight – I’d be the Gladiator screaming and shaking their sword ready to do battle and be acknowledged as victorious.