chemo #1, fail

For those of you wondering, yesterday was my second round of chemo. Before saying anything about that adventure, I figured I should probably tell you a little about the drug I’m on and let you know how the first chemo adventure went.

First off, like any chemo I’ve had, I spend the first hour or so getting pumped with premeds. In the case of the current chemo this just means two drugs. The first is a steroid, which is used to make the anti-nausea medication work better, and an anti-nausea medication that makes we nauseous (yes, you read that right). After all the premeds they them started me on the chemo. All pretty standard, and all of which I some how was completely unprepared for. I looked like a complete newb.

Here are some of the ways that I failed my first chemo. I brought nearly nothing with me. I had been told that this would be a two-hour infusion, and like a sucker I believed that. This sounded like nothing compared to the 6-8 hour infusions that I had had in the past and my sister was going to join me. I figured we could easily fill 2 hours of time with chatting and the like and that I didn’t need any “extra” supplies (probably should have labeled them “essential supplies”). I brought nothing to read, no games to play, and more importantly no snacks or candy. If you’ve never been to chemo, you may not realize the importance of these items, but assure you they are of utmost importance.

The first issue arose when the nurse hooked up the premeds, I didn’t realize I was getting premeds (add an hour onto my time). Then when this was completed she hooked up the infusion and said that they had to go slow with it since it was the first time I had had it (add 1.5 hours on to my time). In addition to this, after the infusion, I would need to wait another 90 minutes (add 1.5 hours on to my time) to make sure that I didn’t have any adverse reactions, after which she went on to list all of the wonderful possibilities. After all of this, plus the extra time it took to have rinses between each infusion, we ended up being there for 5 ½ hours.

Once I was hooked up to the actual chemo, I was feeling pretty alright and decided to go sit outside with my sister – it makes for a much less hospitaly experience and they have a nice little courtyard with a stream. About 5 minutes of sitting outside, I started to feel real weird. Maybe not nauseous but pretty sure I needed to get to a bathroom quick. After telling my sister to tell the nurse what was happening, I rushed back inside, straight for the bathroom and promptly ambush puked into the toilet.

In my head I heard, “Well hello old friend. Welcome back, I’ve been waiting.”

For those of you who are not familiar with the “ambush puke”, my guess is that an explanation is unnecessary, but if your curiosity cannot be satiated please see post from September 9, 2014 for more information and a lovely wedding story.

I wouldn’t call myself a chemo expert, but at this point I figured I knew the ins and outs of this process and would be fine with what ever it was that they were going to thrown at me. Nothing could be worse than the chemo I had the first time through this, plus for many reasons this chemo was supposed to be a lot easier to handle. Of course none of this ended up being true and I looked like a complete rookie. Had I remembered that the anti-nausea med made me sick (which I later found out through my own previous blogging, along with remedies for the nausea – the information was all right there), I easily could have taken precautions to prevent. But no! I went in overly confident and maybe even not wanting to be good at this. There are so many things I want to be remembered by in this world, and “chemo side effect expert” is not one of those things. Although another thing I don’t want to be is miserable, so from here on out I will be taking the advice of past me by sucking it up, and doing what is necessary to make this experience as enjoyable as possible.

Well kiddos, it’s about 6 AM now. I think any more of this story will have to wait for another day. Ryan is getting close to waking up so I have to make sure his breakfast of silver dollar pancakes and fresh squeezed orange juice are ready when he awakens… hmm, looks like I don’t have anything of those things. Maybe I’ll just go in there are start poking him and gloating over the fact that I got up before him – this does not happen often.

In health and wellness,

aja

[insert pithy title here]

[written 7-17-2013]

I have been reading through my previous posts looking to find a way to talk about things I don’t want to talk about (yes, it should sound like I’m 4). Unfortunately, for me, I was quite the writer. A scatter-brained over-sharer who thought pithy titles were better than titles that gave any indication as to the content of the post. I laughed, cried, and cringed at my writing, but found little guidance for my current situation. Somehow using this blog was easier when things looked happy and hopeful, understandable and slightly within my control. Hopeful is still there, happy took a short vacation, but understanding and control have pretty much left the building. Sorry guys, we’re going to have to wing it, again. I think we’ll try quick like ripping off a Band-Aid this time.

So, here goes…

In June, a routine scan found spots on my lungs and sternum. A PET scan confirmed that the cancer had spread to both my bones and my lungs. The biggest tumor in my bones was only a centimeter or so, but there were many. In fact, my lungs showed so many spots that, no one has bothered to count them – despite my numerous requests. Since then I have been bombarded with every test imaginable (okay, so maybe I don’t have that great of an imagination – something like 6 scans/tests) and have already begun a chemo-ish cocktail that I may write about later. No spoilers, but it may have the best pharmaceutical name that ever existed. I know a lot of drug names – this is not an exaggeration.

Well… that’s pretty much the gist of it.

Just like the first time I wrote in this blog, I have had a lot more time to process this than most of you and have had a chance to experience good news. Brain scans have shown that the cancer has not spread to my brain. A lung biopsy (not fun… hopefully that wasn’t a surprise) showed that it was metastatic cancer from the original breast tumor. Which as it turns out, is good news. Weird, right? I assure you we can be happy about this. It means that it’s the same tumor profile and just so happens to have a component that has been studied extensively, ever since I was diagnosed the first time. In the words of my oncologist, “This is the best of the worst news.” Hopefully, that gives some of you some peace. It definitely takes time. Me personally, I’m still trying to quiet the response of “Screw you, it’s cancer.”

So why am I writing this here?

This post may be my fatigue-soaked way of telling those who I haven’t had a chance yet to contact. Ideally, I would have been able to contact everyone individually, but I am just too tired to have this particular conversation anymore. It is exhausting to navigate the politics of who to tell and when, and especially exhausting to be the bad news time bomb again and again. It may be a form of therapy; lord knows they like us cancer patients to journal… everything. It may be an oxy/chemo/steroid delusion and I just didn’t want to make the trip alone. Who knows? Certainly not me. So you may see more of these posts in the future, maybe not for a while, or maybe not at all. I’m not holding myself to any schedule. I do what I want. Why not? I’ve got a pretty good excuse.

So, if this continues, and if you were wondering, the old rules still apply (although a few revisions were in order):

1. I have cancer and I am 29 33.  I still whole-heartedly believe that this gives me a license for creative expression that I may have not have felt before.

2. You many hear some medical/physical/bodily details that you may not want to hear.  If this is the case I will do my best to warn all of those who need warning, but you should know that a few surprises will arise. Get over it, we’ve been here before and at this point you hopefully know what this is all about. If not, you may want to read a few previous posts. It is entirely possible that I no longer have the skill to determine what people may need to be warned about.

3. I will not be censoring myself in any way.  I think that to do this would take away much of the cathartic value that journaling in this way will provide for me.  Plus I am one of a few whose experience with cancer happens in their twenties and thirties.  I want to be as honest and candid as possible.  By doing this maybe someone who comes along this blog later in the same situation, which I find myself in now, will gain some kind of insight that was not available to me at the time.  We are a select few but owe it to each other to give the most realistic view of diagnosis/treatment/reoccurrence/metastasis/etc. as possible.  Which means, hold onto you hats (grandma/pa, dad, mom, etc.), if I am having a shitty day, I will tell you I am having a shitty day.  English is a beautiful and dynamic language and I intend to use it to the extent to which it was designed. (I apologize ahead of time).

Somehow, despite the length of this post, it still feels short. I’m not sure I did a very good job easing you all into this message, although I do think that was the strategy we agreed on, right? Hopefully, you have gotten the information that you would have wanted and know that I am as open as always to talk about my cancer and treatment. Maybe there should be a Rule 4: Ask any questions you want answered, but be prepared to get the answer – that over-sharing thing doesn’t just go away. Fortunately for you all, I was quite the wordsmith in June 2010, so I will leave you a little from that time:

“If you have any questions or want to talk/cry/yell/complain please feel free to call, write, email, text, smoke signal, etc.  It’s a lot to take in and maybe just chatting with me a while to realize that I am doing alright would help.”

Four years later, I still stand by those words.

Love, peace, and health,

aja

Healing Through Fly-Fishing – WOWT Channel 6

I will write more about this experience later, but I just found out that the fly-fishing trip that I recently took was featured on the Channel 6 news here in Omaha.  Here is the article and video if you would like to check it out: Healing Through Fly-Fishing.  And if you have troubles picking me out, I’m the one with the purple sleeves and the grayest hair, yeah… that’s right.

a series of lasts

Life has been a little crazy lately.  But with everything coming due or finishing up as of the first of this month, I am hoping this will free up some of my time to tell you all about what has been going on recently.  (Although there is still one big project that needs to be turned in and on which I should be working – luckily for you all I forgot it at home, oops.)

The biggest news that I have is the series of lasts that I experienced in September.  My last MUGA scan was this month.  These have always come out good (although never as good as that 72-year-old man I met during the first one).  So as long as I experience no signs or symptoms of heart damage, there is no reason for me to have another one.  My last treatment was also this month.  I will be keeping my port, so I will still need to go in and get it flushed, but sitting in a chair for hours on end being pumped with chemicals is now a thing of the past.  And finally I had my last CAT scan to see how the treatment went.  Again, as long as I stay cancer sign and symptom free this should be the end of my CAT scan days.

Surprisingly all of these lasts are quite bittersweet.

Tina, the woman who does all my MUGAs, has been there since the beginning.  She was the one who did my initial bone scan on the day after I was diagnosed.  We reminisced about this during my last MUGA.  That day I had been (hopefully understandably) a mess.  At one point, due to a phone call I should not have received, we had my PA and my Nurse Navigator in the room with her trying to calm me down.  I was a wreck.  We can laugh about this now since she knows I am not actually a crazy person.  It was almost sad when I said goodbye after the scan.  On the one hand I never want to have to see her again, but on the other seeing each other regularily for the last year we’ve gotten to know each other pretty well.

This is the same for the chemo room.  Sure I hated that area of the hospital for sometime, but I was also always taken care of there.  You get to know your nurses in that room, since you spend more time with them than many of your friends for a while.  That final treatment I couldn’t help but feel sad.  But that isn’t the only emotion you feel and I think that can best be exemplified in my last doctors appointment (for a while anyway).

After my CAT scan I had a doctors appointment to discuss the results that the test would find.  Ryan and I were brought back into an exam room.  The nurse who brought me back took my blood pressure, which was the highest it had been in my year of treatment.  He asked if I was nervous, and after crackling out a “yes”, I started to cry.  I had been dreading/waiting for/looking forward to this appointment for so long, but the build up of tension was taking its toll.  He left the room and said that the doctor would be in soon.  Soon is a VERY relatve term, especially when you are waiting for the worst.  We had passed by my Nurse Navigator, Stacey, and my doctor in the hall on the way to the exam room.  During the time that I waited for them to enter our room I analyzed ever twitch, sigh, whisper, and word that passed between them during the 4 seconds I watched them in the hall.

“They wouldn’t look at us – that can’t be good.”

“They seemed so serious – probably trying to decide how to tell me.”

“I think I saw one of them shake their head, definitely a sign of pity.”

Never once during this internal monologue (there was no way I was sharing these hopefully irrational probably crazy fears with Ryan) did I think that they could have been discussing anyone else’s case but my own.  I realize now that yes, this is complete and blatant egotism, but at that point the world was in fact revolving around me.

Stacey entered first and started some small talk that I have absolutely no recollection of at this point.  I just remember inside my head the sound of screaming, “why are we talking about this, tell me my results!”  Luckily when Dr. Shah entered, the first thing that he said was that the tests looked great.  With these words I released tension that I had been holding for the last 16 months.  The rest of the appointment was quite relaxed, although again I have very little recollection of anything that we talked about (hopefully it wasn’t too important).  It wasn’t until the end of the appointment with the words, “well, I guess we’ll see you in January”, that all of the tension returned.

January?!?  Throughout treatment I dreamed of a time that I would not have to come to the hospital for months at a time.  I was so excited when I had reached even one week without having to enter a hospital or see a doctor, why wasn’t a 4 month hiatus that much more exciting?  Well, excitement was definitely not an emotion that I would name for this moment, terror would be much closer to the truth.

There is a peace and comfort that I had been getting from all of the appointments and time spent at the hospital.  I was being monitored and taken care of.  I had had the same feeling at the completion of chemo.  You want to be finished and go back to life as you knew it before your diagnoses (which is actually impossible), but it is scary not having that connection to the people whose jobs it had been to keep you alive.

I heard recently that people with “doer” personalities have the hardest time with the completion of treatment.  You are no longer actively “doing” anything to fight against your disease.  That lack of action creates anxiety and fear, plus there is a good chance that all that “doing” has taken you away from dealing with these realities and emotions to begin with.  Basically the definition of my time in treatment.

Uff, duh.  This has become a long post.

What I wanted to tell you in beginning of this post was: I am cancer free.  As you can see if you finished this post all the way through, a cancer free body does not mean a cancer free life.  There will be the obvious changes in life due to continual appointments and scans for the rest of my life.  But no matter how far the time between these become, cancer will always be a part of my life.  This isn’t a bad thing or even a hopeless or disheartening thing.  It just is.  It is a piece of the new life I have now after being diagnosed, and I just need to decide where it fits in that life and how I can use it for my benefit.

donations!!! (enough said.)

When I looked at the donation standings today, I found some bad news.  Our team is no longer the clear winner with a $1000 lead on the next team.  At this point we are only $300 away from being upset by the #2 team.  No one wants this!

Then, I realized that I really haven’t made much of a call for donations through this blog venue.  Many of the post I have written are in some way affected by the efforts of the Komen organization.  The Image Recovery that I blogged about yesterday receives a large chunk of its budget from Komen.  Through Image Recovery I received a wig, which in the end was paid for by Komen.  Plus all the posts about the Race for the Cure.  The Komen organization is really seeped into many aspects of the care that many breast cancer survivors receive.  In some states it’s the only way that uninsured women are able to get diagnostic mammograms, early on before a breast self-exam would detect anything.

So if you haven’t had an opportunity to donate or were waiting for the most dramatic time to swoop in and do so, now is your chance!

Thank you on behalf of all survivors; past, present, and future.

http://nebraska.info-komen.org/site/TR/RacefortheCure/PAP_NebraskaAffiliate?px=8893692&pg=personal&fr_id=2164

Mirror, mirror on the wall, who is that? – LivewellNebraska.com

I had the opportunity a couple of weeks ago to speak with a journalist from the Omaha World Herald about my experience at (the wonderful) Image Recovery, Alegent’s salon for cancer survivors.  This is the place that I had my head shaved, where I got my wig (Vickie – also featured in the Herald this week, although with Ryan, not me), my prosthetics, bras, and an incredible amount of emotional support and understanding.  Not to be too much of a commercial for Alegent, but the Image Recovery and Nurse Navigator programs were integral to my success in treatment (thank you, Beki and Stacey).

They just posted the video this morning and I thought that some of you may be interested in seeing it.  Oh, and a warning for all of you (Kristine) who read these posts at work, this may be one you want to wait to watch at home.  The video is at the bottom of this link: Mirror, mirror on the wall, who is that? – LivewellNebraska.com.

short on time, personally

This has been the craziest month of my life, okay so there may be some exaggeration there.  But pretty busy none the less.   Between Race for the Cure (if you’d like to donate click here), school, doctor’s appointments, roller derby, fly-fishing, the list goes on and on, I have had barely enough time to catch my breath.

You may have noticed a few teasers in the last sentence.  That’s to keep you listening.  I have plenty to write about and when given a few moments to myself that is exactly what I plan to do.

In the mean time, here is a little treat that should “entertain” and give you a little boost of team spirit for the up-coming Race for the Cure.

And if there was ever any doubt before, you should know now that I love you all.  Love is the only way I would be crazy enough to put this psychotically unflattering video on the internet.  Plus maybe this will give us a few pity/shame/embarrassment donations, guess it couldn’t hurt.

Enjoy (I know I won’t),

aja

P.S. Note addition of a backup baritone at about 1:39, thank Adam!

the man of my dreams

How do you say thank you to the man…

…who after only six months of marriage sat with you for every doctors appointment and scan?

…who shaved his head, so he would always be the one with the shortest hair in the house?

…who followed you up a hill (even though you were yelling at him at the time not to) just to make sure you were okay as you puked, even though you had no hair to hold?

…who has somehow seen beauty in baldness, puffiness, crankiness, and bitchiness?

…who cleaned the house, made dinner, did laundry, mowed the lawn, walked the dog, shoveled snow, made a living, and all the other things that you didn’t even realize that he took care of with out any help from you?

…who sat in silence because you didn’t want to be alone but couldn’t even talk?

…who to this day won’t even suggest Jimmy John’s let alone choose a path that brings you near the nausea-inducing establishment?

…who sat and listened patiently to all the crazy fears you were able to conjure up, when fevers, nausea, and pain took hold of your mind?

…who went to the grocery store at whatever hour of the day to quench bizarre cravings for mash potatoes, life-savers, or popsicles even though he knew you wouldn’t eat them anyway?

…who no matter how bad life got always made it better?

Hope this was a start.

I love you Ryan and I hope I never have to repay you for your year (+) of kindness.  (I can almost guarantee that I wouldn’t be as good at it.)

lagging on multiple levels

Who knew when I said that I would attempt to blog weekly that this would be such a tall order.  Now that my life is becoming less and less dictated by treatment and side effects it seems almost impossible to sit down and take the time to write anything.  The other issue being that I don’t have nearly as much to say.  With cancer being a less and less frequent word in my vocabulary it seems that their is less and less to talk about in regards to it.  Although it may not get talked about in everyday life or need to be referenced in each aquantance I make, I wouldn’t say it has moved any farther to the back of my brain though.  My head still constantly swims with thoughts of cancer, children, reoccurance, survival rates…

But I’m getting away from my topic.  Lagging… and it’s not just me.

I know we don’t want to hear about it.  Hey, I know.  It’s only just turned September and already I feel like we are in the last moments.  If you haven’t figured it out yet, I’m talking about the Race for the Cure.  My own fundraising is lagging and we will see to what degree when Daniel posts his earnings from the Fun for the Cure event that he hosted at the Fox and the Hound.  For those of you who were unable to come it was a blast.  Fun, food, drinks, and prizes – where could we go wrong.  For Daniel this party was strickly business though and from the initial rumors I am hearing it sounds like he will be blowing the rest of the Nebraska fundraisers (myself included) out of the water here shortly.  You’re a sly one #11, but boy do you know your stuff!

If you haven’t done so yet, please consider:

1. Donating to the Race for the Cure: I am still only about a third of the way to my goal and really want to make the Pink Honor Roll again this year.  Plus, I haven’t been able to find the Survivor standings, but when they do post I would love to be at the top (and of course beating our competition from last year – Virginia).

2. Joining our team the Hakuna My Tatas: (you must sign up for teams by September 18).  Even if you are unable to get to Omaha or Kearney on the days of the race (or just don’t want to get up that early) you can still be part of the team!  Their is an option to “Sleep in for the Cure”.  If you choose this participation option you get to be part of winning team without setting your alarm clock!

It has been a slow start, but let’s get our fundraising motors running.  Let’s make Hakuna My Tatas the team to beat in 2012!!!

P.S. It has been so long since I posted that I have forgotten how to do it!  I made this post it’s own page on accident.  Sorry for any confusion.

a worthy adversary

I’m not someone who does things half-heartedly, so when it came to picking a frenemisis I searched long and hard for someone worthy of my time and dedication.  Daniel has definitely lived up to these expectation.  Just when I think that I have a chance to match his fundraising skills he comes back at me with another newer and more exciting plan. 

I changed my FaceBook profile picture to reflect my participation in the Race for the Cure and he changes his FaceBook profile picture to one of those smart phone scanning things for even easier donations.  I don’t even really know what it is and he’s using it as a tool to annihilate me!  And now after thinking I was on top of my game by having a few people over to celebrate the reclaiming of my diagnosis day which raised almost $80, I get this in the mail:

The man is a genius.  Just think of the potential that an event like this has to raise money for the Race for the Cure!

So I say we show him!  And the best way to really stick it to him will be to show up on the 6th of September and have a great time, drink lots of economically priced beer, and bid big for all of the silent auction items.  Okay, so I’m not entirely sure how this will get him, but he is a member of the Hakuna My Tatas and we should all go and support him – geez, people it’s not all about the winning.

If you decide that you would like to join in the fun you can let me know and I will RSVP for us as a group or you can RSVP to Daniel directly at dlevy08@gmail.com.  Either way I think he would like to have a rough estimate of numbers so the Fox and Hound know how many to expect, so RSVP to one of us by August 31st.

And remember – the deadline to join teams is September 18th, so if you want to be a member of a winning team follow this link soon!  And if you can’t make it, but would still like to donate feel free to stop by my fundraising page.  I’m about 25% of the way to my goal, so we’ve got a long way to go!

P.S. Daniel, if you are reading, this post is in NO way an admission of defeat.  I am still SO in this game.