Chemo Brain

I get the Lance Armstrong Foundation newsletters and such, and I always read them with great interest. Advocacy is so important and I understand that now much better than I did a year ago. In addition to advocacy, I enjoy reading survivor stories because, well, it just makes me feel good to see all of out there who are beating cancer and/or living with it.

Kim's story caught me in one paragraph especially:

I have always had an impeccable memory. Any conversation, anything, I can remember verbatim. It’s been a real issue in the family. Since chemotherapy and radiation, I have found that my short-term memory has been affected. Walking into the kitchen to do something, and by the time I get there, it’s gone. I can’t remember it. Not just people’s names, because everybody forgets names, but objects, simple objects that are part of your vocabulary. I have to take a little bit more time sometimes to think of it. It’s just not right there on the tip of my tongue. That’s just something that I don’t think will go away. It’s not debilitating, but it is something that you have to accommodate for. It is a physical issue. And my doctors, they’re like, “Oh, everybody forgets people’s names.” But they don’t see me walking to the kitchen to do something and by the time I get there, forgetting what I was gonna do. My husband’s the only one that sees that.

I, too, always had an amazing memory. It was something that was constantly commented on. And I, too, have pretty much lost my short-term memory. Forgetting the names of everyday objects is common. It's on the tip of my tongue, but I just can't get it. Sometimes I have no idea where I'm supposed to be, but I know it's somewhere. There are times that a person looks familiar, but for the life of me I can't place them. And these people can be people that I see every day, people I know. But forgetting is a part of my life now.

In fact, my forgetting to bring someone their birthday card to a birthday party was the catalyst for the destruction of a long-time friendship (I've since realized that was a symptom of a much bigger problem, but when you're about 2 weeks out of chemo, it sure doesn't feel that way).

My short-term memory problems led to me not getting my full bonus this year because it led to me forgetting things here and there which made me look as though I was turning in incomplete work and we all know that there's nothing more frustrating than people who half-ass shit and expect you to catch their mistakes.

In addition to the memory problem, there's what I call the "over-sensory" problem. If I'm in a crowded place, or in a lot of traffic that's moving quickly, or a store with too many people in one aisle, or a million other situations, I freak out. I can't get a grip. It's not a panic attack, probably closer to an anxiety attack or something. It's freaky as hell and I have to pop a Xanax or two. That's gotten progressively better, but it's a factor in my life.

The memory is coming back a little. It's not as bad as it was, or maybe, at least with some things, I've figured out a system that works in helping me know where I'm supposed to be, or what I need to be doing. I have lots of lists and a Blackberry now. It helps.

But chemo brain is very real. Don't let anyone ever tell you it's not. And it sucks. I might appear normal now to you and everyone else, but I'm not to me, and that's where it counts the most. Now I've learned to manage it so it isn't as bad, but it's still not fun.

All Clear!

Again, another unremarkable scan! I'm still showing some uptake in the spot of the original tumor, but it's down from SUV 4.4 to 4.0 and is still showing to be consistent with thymic rebound. In other words, I'm perfectly fine. Yippee!

Of course, I went to my GP today (the amazing Dr. Gupta) about this lovely red, scaly crap on my eyelids (and spreading to beneath my eyes). He said it's consistent with Seborrhea. Yay. I've always had it on my head, but then I was bald and on prednisone so it went away. Now, as a result of the prednisone, it's back. And chances are it won't respond to anything but oral steroids. So the plan is to try and "manage" it since there is no cure for it.

So, not only did I cut off all the hair I did have because the dermatologist told me that the red, scaly crap was a reaction to my hair dye, I'm also a good 45 pounds heavier than when I started all of this, and I have a scaly, red rash on my eyes, behind my ears and in my scalp (which flakes onto my shoulders). And oh yeah, I wear glasses now. Which I keep "forgetting" to wear.

Seriously, why am I still single?

Oh well, at least I'm alive, right?

PET Scan

After numerous attempts for me to have my semi-annual PET Scan, it finally happened this morning. No results yet, so nothing to report. This is the first time I've had a scan without having an appointment with the Onc the next day, so I'm curious as to how long it will take to get my results. Luckily, Dr. George knows I don't play the waiting game, so it should be tomorrow afternoon.

The scan itself was a little more eventful than times past in the fact that the Ready-Cat (the ick I have to drink before scans) seemed to be served in a 5 gallon jug. When it hit my stomach today, I kind of thought I might puke. But I was fine.

Next I was shot up with the radioactive stuff and it was nap time (you have to lay still in this dark, warm room for an hour before the scan to let the radioactive stuff get through your body). Next I went in for my scan and for some reason, I just couldn't get comfortable on the table like I usually do. They had to go so far as to strap my head in this time (I swear, the procedure changes just a little each time).

When the iodine was flushed through me this time, it burned more than it had in the past, and my stomach hurt, again. But it ended quickly, and so I dozed off a little again and woke up just in time to be uncomfortable enough that I wanted out. Luckily, it was almost over.

Once it was over, I left and went to pick up Karla May for lunch at Sazon. This, it turns out, might not have been the best idea. When we left, I felt really woozy and a little sick to my stomach. By the time we got back to the office, I pretty much just filled out a PTO form, put it on Karla May's desk and went home. I got home, fell into bed and didn't wake up until 5PM.

I still feel woozy and I'm going back to bed. Hopefully I'll have results tomorrow.

Hopefully, the fact that I'm not keeping up this blog is a testament to the fact that I'm feeling so much better than I have in the past year. My energy is getting close to my pre-cancer energy level (I was never high-energy like my brother, so lucky for me, I didn't have far to go), my mind has calmed down a lot, and I feel pretty freakin' good. And it's not even an "I feel good considering", it's just a straight-up "I feel good".

So many people have said that you adjust to a new normal after chemo. I honestly feel, physically, very close to my old self. There are still times that I get more tired than I feel like I should, but I don't know if that's age or chemo. I prefer to think of it as chemo since I want to be young forever. Also, things like PMS or allergies or a cold affect me more than they did pre-chemo. Things I used to just "suck-up and push through" I now find myself saying, "I don't feel well, I'm tired, and therefore, I'm going to take some time out to rest and rebound." I find that when I do this, I tend to recover quickly rather than letting something drag on for days. That's probably a good lesson to learn.

Mentally, some things have changed, and changed for the better. Some people might see it as selfish, but I see it as being true to me rather than what I think were people's visions/wants of me.

No longer do I do things that I don't want to do. If it doesn't make me happy or bring me joy, then I don't do it. If I don't feel well, or I am not in a mental place to do something, I cancel plans or I don't answer the phone or I stay back in my cube at the office and try not to interact. And I truly wish more people would take this approach. I don't want to be around you if you aren't in the headspace to be present. I don't feel guilty for canceling, I don't do things just because I feel like I should or I'd be disappointing people for not doing it.

Life's too short. I did learn that. Life's too short to feel guilty for being true to you, life's too short to spend time worrying about what other people think, life's too short to spend time doing things that don't make you happy. If this makes me selfish, then that's that. If a person thinks less of me for not doing something that they want me to do, but that I don't want to, then they need to look inside of themselves and figure out why they want someone to be or do something that they aren't going to enjoy or be present for.

Of course, I understand that there are times in our lives that we do something that we might not necessarily find joy in order to be there, support, or otherwise help a person we love. However, I think that we all know what those things are versus little things that in the end, really don't make a difference. I also think that when you aren't doing those things that you enjoy, but want to do to make someone else happy, that you need to make sure that you are present.

Up until a few months ago, I insisted that cancer didn't teach me anything new, or give me anything other than pain and grief. I said a million times over that I was a good person before cancer, and I didn't need it to make me a better person. And I still believe that for the most part.

I do think though, that it's taught me who I am, and to be true to myself, and most importantly, to be present in every moment of my life. And since I'm seeing this more clearly now, I have a feeling that some might take this as to mean that I've become selfish. If that's so, then that's fine. I'm not going to say, "I'm sorry." I'm not going to apologize for being present in my own life, cutting out the things that cause me pain and grief, as well as the people that do the same thing. In the end, we all answer only to ourselves, and figuring out who ourselves are, and how to be good to them is the best thing we can do.

And maybe it is the fact that I survived what I did, and some things before it, that are giving me more self-confidence, something that I've lacked a whole lot of, for whatever reason, my whole life. More than one person has told me that I need to find a way to project the person that my close friends and family know to the rest of the world, and I think, by being present every day, that I'm getting closer than I ever have to actually believing what so many people have always told me: that I'm pretty freakin' amazing.

Men might want to skip this post...

Hair, April 2007
Originally uploaded by jayejoseph.

I got my hair cut today. I got it cut for the third time since it started growing back in September. If you didn't know what I'd been through, you'd think I was just a fat girl with cute hair.

The crazy thing is, this is the second time I've had it cut in 4 weeks. Katie, my amazing friend and stylist, measured my hair from where she cut it above my ear last time. It's grown 2 inches in 4 weeks.

TWO INCHES IN FOUR WEEKS PEOPLE!!! This is incredible. If I weren't seeing it with my own eyes? I wouldn't believe it. It's growing like this on the sides and the back, but not as fast on the top. It's still growing on the top, in fact, it grew an inch in the 4 weeks! I have roots in my dyed red hair!

To the men out there, and the men in my family especially who are reading this, I apologize for what you are about to read, you can skip this part.

My periods are back and they are getting more normal every time they come. If you didn't know, I went into a chemo-induced menopause that lasted conveniently until I got to Europe last fall. It was really irregular, but has started being more normal the past 3 times. Not perfect yet, but very close. And it's more like the kind my friends have--PMS that only last a day or two right before I start. I used to get severely depressed and freaked out for about a week, two weeks before I started. Then I was fine, then I would have my period and no cramps or anything.

Now, I know all about day 2! And I have it! And I have 4 boxes of Feminax to see me through it! God bless the Brits! Looks like I'm not allergic to Codeine after all.

Now, back to my hair. It's gunmetal-gray, thick, curly and coarse. My old hair was fine (but I had a lot of it), board straight and brown. I used to rarely use products and didn't condition too much because it would just go kind of oily and flat if I did. Still, I loved my old hair.

My new hair today required 4 different products, a blow drier and a brush. Do you KNOW how long it's been since I used a brush? A blow drier? Seriously. I haven't in a full year.

I can't quit looking at it. I have hair. Cute hair! Hair that is styled in a way I want it to be. Hair that is STYLED!

I wanted to go meet some friends for a drink tonight, and instead, I decided to stay home, take my illegal British drugs and revel in my cramps and cute haircut. I'm starting to actually feel like a woman again. I hope this keeps up!

Happy Cancerversary to Me!

One year ago today, I wasn't feeling well for about the third day in a row and the previous Friday, had been so out of breath going to the bathroom in the middle of the night that I couldn't catch my breath when I got back in bed and my chest hurt.

Thinking it was allergies, I made an appointment to see Dr. Gupta at 10:15AM. He saw me, told me I wasn't presenting with allergies, and ordered a CT Scan, (STAT!) to rule out a Pulmonary Embolism. By 4:45PM Dr. Gupta had called me and asked me to come into his office. By 4:50, I knew that I had "a spot on my lung" and was screaming Karla May's ear off hysterically, and about to flash my roommate (that's another story). By 5:30PM, I was in the hospital, surrounded by friends, with the knowledge that I most likely had a form of cancer called Lymphoma.

My only knowledge of Lymphoma was that Jack Devareaux had Hodgkin's Disease on Days of Our Lives. Jack lived through that, only to go through so many other trials and tribulations. Like being stuck on Aramed Island at the hands of the evil Stefano...

Anyhoo, through the next week, I would learn that my type of cancer was very survivable (is that a word?) and that I had the best friends and family on the face of the planet (although, I didn't need cancer to tell me that). One year ago today, I started a year that would change the way I see my life and the world around me forever. The past few months have been spent learning to accept the fact that nothing will ever be the same again and what I've always known as normal never will be again.

And now I have to say, "Thank God that shit is over."

Expensive Flip-Flop

I think that I might get the award for most creative use of leftover chemo-related pills. You can read more about how this project came about over here.