The One Where I Review My Sister's Keeper and Other Stuff

Turns out, when you have cancer, a lot of what you do is waiting around hoping that medicine (poison) is working inside you. As of yet, I haven't seen many indications that it's doing its job. I still have my hair - though I'm getting used to wearing scarves and hats so it's not a huge jump. I have to admit - I have fantasized about getting body crayons and letting my friends draw on my head (I think this could be a lot of fun :)) - but that'll have to wait until after my hair follicles stop hurting.



I picked up Jodi Picoult's My Sister's Keeper not because I have cancer so suddenly it's relevant, but because I'm working to complete The Rory Gilmore Reading Challenge. So far this summer I've read The Art of War, Metamorphosis, The Jungle, and Water for Elephants. Including all the books I read this past year and all through high school, I'm at about 50 on this list. But this weekend I was working through My Sister's Keeper. 

I'm glad I read it now and not in 8th grade when all my friends told me I needed to. It's kind of cool to know all the medical terminology like "bone marrow aspiration" which just makes my pelvis hurt thinking about it. At first the amount of narrators bothered me, but once you begin to understand each person's voice it gets easier. Much like another favorite: The Guernsey Literary and Potato Peel Pie Society.

All in all, I would recommend the book, but it makes it a little more real if this has been an experience you've had before. It's a lot more realistic than The Fault in Our Stars, which after comparing that to real life, isn't as accurate as they make it seem. Two kids with cancer just would not be able to walk that much. I'm sorry. And there was not nearly enough hand sanitizer. Maybe that was supposed to be symbolic in that Hazel didn't want to take precautions to save her life anymore? (#sarcasm)

So, an update on my life. We are reaching the end of the first 14 day cycle and will be starting all over again on Wednesday. Tuesday I go in for a short appointment to get blood taken for labs, which will determine if I'm ready for chemo on Wednesday. Then on Wednesday we're going in for my second round of drugs. My next post will be on the different drugs themselves and how each effects me.

Current symptoms, side effects, and complaints: Nothing :)

Prayers to my old swim coach Mike Slagle who suffered a heart attack last night!

The One with Hardly Any Side Effects

Woo! One round of chemo done, only....who knows how many more (at least 7, at this point). But let's not focus on that. This whole weekend I've been up and about, eating pretty regularly, botching knitting projects (I do not want to talk about it), and generally surprising everyone with how I'm feeling.

When I came home after chemo on Wednesday, I slept a ton. But apparently this was good because I woke up the next day feeling pretty okay, besides some fatigue. Since then, I haven't gotten sick or had any of the really typical chemo side effects most people report. I have a little tingling in my thumbs, a little dry skin, some blurry long distance vision (good-bye driving for now), and then just being tired.

When my mom and I went in for side effects education two weeks ago, my wonderful nurse Katie ran through a list of what seemed like 1,000,000,000 side effects that could happen including, but not limited to: nausea, poor appetite, constipation, headaches, organ failure, depression, yellowing of the eyes, and hair loss. But like I said, I haven't experienced many of these at all. I was especially surprised that I've had no nausea since I had such a bad reaction to the Emend during treatment. But after two days of Zofran (another anti-nausea drug for at home), I'm not taking any medication.

The fatigue can be really tough, but there are several things that I've been doing that seem to help combat it.

1). Yoga. I've always loved doing yoga, but already I can feel that my muscles are weakening, and I'm not as flexible as I used to be. However, doing two 15-minute sessions of yoga (once in the morning and once at night) help a lot with balance. Fatigue can make it hard to stand up, go up and down stairs, and sit on stools, but doing poses like tree and the different warrior variations help a lot.

Not me, but look at how happy she is doing yoga! 

2). Walking. You may see me walking around town a lot, either in a large block or down to the bookstore and back. I try to walk at least once a day. Like the yoga, this keeps my blood moving and helps get the good cells in my body to work while the cancerous ones are dying.

3). FLUIDS. I have been drinking so much. Tap water no longer tastes good, but if I have a lot of ice in it, water has been fine for me. I also have been drinking that bottled "Peace Tea" which has a strong flavor to get rid of the metallic taste in my mouth. All the fluids keeps things moving. Dehydration is also the main reason most cancer patients end up in the hospital, which I am itching to avoid. Unfortunately coffee doesn't count toward my daily fluid intake, but so far it hasn't been that hard to drink enough. Fluids also help in keeping skin and lips moist (another side effect).

If I think of anything else, I'll add to this list. But so far, we are good! Thanks as always for the support and prayers :)

Current symptoms, side effects, and complaints: fatigue, tingling in thumbs, blurry long distance vision, and metallic taste in my mouth, dry hands and lips

The One With Chemotherapy

1 down! Yesterday I had my first treatment of chemotherapy. Overall, it hasn't been that bad. I haven't been nauseous, but I have been pretty tired.

There was only one scary moment during chemo, but it was fixed right away. They were going to give me an anti-nausea drug called Emend, but I had bad reaction to it. My chest tightened up and for a few minutes it was really hard to breathe. Thankfully my nurses and my oncologist were very close by and with the help of Benadryl, I was just fine. And I was assured that I was never going to get that drug again; they had several anti-nausea drugs to pick from.

After that, the Benadryl made me pretty sleepy. I was awake for the first infusion of chemo, but slept through the next two. My last drug took only 5 minutes to get injected, and then we were free to go. I was a little shaky on my feet, but I made it to the car and slept on the way home. We got home around 3:00, and I went straight to bed. Dad woke me up around 6:30 to eat some chicken soup (it's very important to eat and drink after chemo), but I could only a few bites before almost falling back asleep. Then I fell back asleep until this morning (minus one bathroom break around 2:30).

I haven't gotten sick, and I really don't feel that nauseous, which is fantastic. I am tired, but doing little spurts of yoga and grazing instead of eating big meals seems to help. I've watched two movies (Philomena and The Butler) and started a knitting project. I also don't seem to have "chemo brain" yet. I would say I'm pretty lucky.

Thank you to everyone who has left comments, sent cards, or kept me in their prayers. As always, they mean so much. And thanks for liking the new haircut pictures on the Facebook page! I'm excited to see which one wins the page's profile picture. I don't think I'm ever going to go back to long hair after this :)

Current symptoms, side effects, and complaints: only a little tired

The One Where I'm Not so Positive

Last Friday (at 5:30 in the morning) I had one of my last pre-treatment procedures: getting a port. A port is basically a little piece of bionic equipment that goes underneath my skin beneath my left collar bone. During chemotherapy, nurses will use the port to draw blood and inject the medicine. This is nice because I won't need IVs anymore and the chemo won't tear my little veins apart. Not a ton to report on the procedure itself. It was quick. I can't feel the port in me, which is neat, and hasn't affected my sleeping at all.

(Having a piece of metal in my body = Iron Man).



Instead of just reporting what I'm doing, this post is going to be about how I'm doing emotionally. Gotta keep things interesting :)

Thursday and Friday were hard days. There isn't really a particular reason, the surgery on Friday didn't affect me especially, but they were hard emotionally. I found myself lethargic, mopey, and grumpy. No matter how many mind tricks I played on myself, I couldn't seem to get out my slump. But honestly, this was okay and probably really needed.

A lot of people have been commenting on how positive my blogs are, and the nurses at both the hospital and the cancer center say that I have a good, strong attitude about cancer. And a lot of the time, I'm not really thinking about it or how it's affecting my life. But to be more honest, and especially to reach out to future cancer patients, it's important to realize how much sadness and anxiety is a part of this experience. I had a really good tip come in a couple weeks ago when I first put the Facebook page up that it's helpful to set aside 10-15 minutes when things seem really rough to just mope or have a pity party. A set time limit helps these moments of despair become tolerable, and that don't seem to consume your life as much as they could. 1 in 4 cancer patients end up with depression, and it's really easy for me to see how that could happen. But it's so much easier to cure cancer when you have a more positive attitude about it. You try harder and your body works with you when you have the goal of getting better.

When you think about it, I'm really blessed. There are millions of people with cancer all over the globe. I could have gotten this as an old Haitian woman. I could have gotten a worse cancer in the United States. I could be younger than I am or much older than I am. I could be one of the thousands of Americans who can't afford health insurance (mini dance party for subsidies! :)). I could have an even worse disease, like multiple sclerosis, which is so, so much worse than cancer. My prayers and deep admiration for anyone living with MS. You are the hero here.

Finding the positives and little silver linings (sorry for the cliche) are necessary when going through this. For me (and not many people besides me), losing my hair is an opportunity to try a style I never would have and have an excuse to shave it all off for several months. This means 2 minute (tops) showers and helping out the environment. I also can really see how many people love me through your comments and well wishes. It absolutely makes my day when I hear from a friend or relative who sends their love.

There are obvious negatives, and I haven't even started treatment yet. But focusing on the positive parts and venting when I feel too stressed out keeps things tolerable. Current and future cancer patients, it's more than ok to cry or yell. This sucks. What you're going through sucks. I wish you didn't have to go through it. But by relying on those around you who want to help, allowing yourself to have some break downs (they're needed), and recognizing that you can actually get through this, you can avoid depression and become well so much quicker.

Thank you again to my wonderful support team without which I would be lost. I love you all.

Current symptoms, side effects, and complaints: I don't have a huge appetite, and my neck area is sore from the port.

ALSO! Today was a really great day. I spent my time at work building a castle out of cardboard for my summer reading program and found out I will soon be a published author! America Magazine is accepting my manuscript "On the Road to Peacebuilding" for their column Generation Faith. It will probably be a long time before it is actually published, but I'm excited :)

The One with the Bone Marrow Biopsy

I'm hoping that at this point most of you have realized that the titles of my blog posts were inspired by the show Friends, which I have been re-watching. If you haven't seen it yet, you should. And then watch The Office.

Look, Joey and Chandler are ready to battle cancer with me...because chemo starts this coming Wednesday!



Yesterday was my bone marrow biopsy, which, as I was told before the procedure, is pretty awful. It was. Unfortunately this is just one of the things that comes with being diagnosed with cancer. Basically, my doctor, two lab techs, a nurse, a medical assistant, and Henry all surrounded a bed where I was laying face down on my stomach with my lower back open and ready to be poked. Everyone just sort of awkwardly stood around as the nurse introduced them. They all laughed when I lifted my head to call "hey everyone, how's it going?" Then Dr. Baatz, my oncologist, injected the lidocaine into my hip area. It burned, but only for a couple seconds. After that they injected it deeper, but I couldn't feel that one. Then she made a small nick in my skin with a scalpel, but I couldn't feel it because they had numbed me so well.

After that, she took a much larger needle (and bear in mind, my face is in a pillow and cannot see anything), and began to poke into my back left hip. This was the part that hurt - but not a sharp pain, just a ton of pressure, like she was trying to break my hip. They, unfortunately, didn't get a big enough piece of bone marrow the first time so they had to do it all over again. After they had a better piece, they took a syringe and tried to suck up some liquid bone marrow from the cavity, but didn't get any. This part hurts too, kind of like a burn in your side, but it's over quickly. After everything was done they put a huge a bandage on, and I was really sore. Still pretty sore today.

Today is the heart and lungs tests, which, by contrast, will probably seem like a lot of fun :) But tomorrow is my 5:30 a.m. surgery to get my port put in (much too early for surgery, in my humble opinion). And chemo starts next week! Time to start getting better!

Current side effects and complaints: sore left hip and tired

The One With the Million Appointments

I thought earlier this year I couldn't live without my planner. But after this week, I am completely dependent on it. After my first oncologist meeting on Friday, we scheduled an overwhelming number of visits to nurses, technicians, and surgeons and crammed them all into these next seven days.


My wonderful planner :) There are 7 Jane Austen books pictured.

First, my meeting with the oncologist last Friday. I met my new best friend, Dr. Baatz, in the cancer center with my parents, Henry (boyfriend), and Mary (one of my best friends from college). First we met with a nurse who went over my whole medical history - which I would not have remembered completely without my team. She revealed my "working stage"....2A! Which is a lot better than we expected given how many swollen nodes I have. The 2 means that I don't have any cancer beneath my diaphragm but I have it on both sides of my neck. The A means I don't have any "B" symptoms: itching, rapid weight loss, and night sweats. This was definitely good news.

Using this stage, we are able then to figure out my treatment plan. Chemo doesn't depend on just your type or just your stage because every body and every cancer is different. It's dependent on stage, type, and a couple other factors. My other factors are that it is non-bulky (doesn't take up more than a third of the diameter of my chest) but high-risk (because I have 3 infected sites). My chemo plan is AVDB (or AVBD? some combination of those letters). The first part of the plan is 4 cycles of chemo. I'll be treated every 2 weeks for four months. After that, we'll assess how well I'm doing with another PET scan and figure out if I need more chemo, some radiation, or something else entirely. I will probably have 2 months of chemo after that.

We found out that the chemo will almost definitely make me lose my hair. I'm actually, surprisingly, positive about this. I have been battling my thick, thick hair since I had it and it will be a blessing to have a reason to cut it short and then lose it completely. I'm sure I'll have a new appreciation for it when it does grow back (though I'll be annoyed if it comes back even thicker :P). I will be cutting my hair short in 7 days! Prepare for pictures!

Today, I'm going in to meet my nurses who will talk about the short term side effects of chemo, like nausea, constipation, and fatigue. After that I will meet the surgeon who's going to put in my port on Friday. A port is a little mechanical device that hooks into one of my arteries. Chemo does nasty things to veins, so a port is used to avoid using an IV each round. On Wednesday I have my bone marrow biopsy, and Thursday I have two tests to assess my heart and lungs before treatment. Friday, again, is the surgery for the port. Next Tuesday is my second meeting with Dr. Baatz (and that night is my haircut!). And Wednesday chemo begins!

So that's what's been going on :) Thank you a million for all the well wishes and kind thoughts.

Current symptoms, side effects, and complaints: Nothing, though I wouldn't turn down a nap :)

The One After the PET Scan

I know you were all worried, but yes, I now have carbs back in my body.

Tuesday was the PET scan - the first of many, most likely. Before even getting to the hospital, I had to drink 3-4 glasses of water (which, on an empty stomach is not easy to do). Once we got there they hooked me up to the IV to check blood sugar and later to get the radioactive sugars into my blood.

They actually kept all the PET scan medicine out on a truck that travels around the area. Every time we wanted to get on or off of the truck we had to ride on a little crane, which took way longer than if they would have had a little folding staircase. They set me up in a reclining chair and used the IV to put in the medicine. Because it's radioactive it was encased in a large stainless steel cylinder.

The wait time really wasn't as awful as I thought it would be. I could listen to the lab techs' conversation, hear the music coming from the hospital, and curl up in the chair and dose for a while. Thankfully I heard the "she's got three more minutes" so the lab technician didn't have to wake me up.

It was the 25 minutes in the PET scanner that seemed to take the longest. The PET machine looks a lot like a CT scanner, but instead of just focusing on your head, you lay on a table that moves in and out of the tube to get a picture of your whole body. It sort of felt like going into a closed water slide - backwards and forwards :P. My nose started to itch 15 minutes in, and not one person truly knows pain or self-control as a person who knows if he or she moves a hair the whole process starts all over. I wanted to cry. The last ten minutes dragged on for years. After the table finally came back out of the machine, the nurse walked me back into the hospital to make sure the radiologist said the pictures looked good.

Unfortunately there was one area that didn't come out clear, so I had to empty my bladder again and go back in the machine. This time it only took about five minutes - they just needed to see my pelvis again. We went back home and the whole family went out to Culver's :) .



For the rest of this business, I'm going to start watching what I eat and try to stay lower on carbs and sugars. If you have any low-carb, low-sugar favorite recipes, send them my way!

Tomorrow I had more appointments scheduled than the original meeting with the oncologist. I'm now having more blood work done and another CT scan. This time I have to take a contrast (some kind of drink) beforehand. Has anyone ever had a contrast before? What's it like? After a little while of waiting, the meeting with the oncologist is at 12:30. There we'll learn about my specific kind of lymphoma and hopefully start getting ready for treatment.

PET scan results will be shared when I have them :)

Current symptoms, side effects, and complaints: Not a one!

Also, I really appreciate all the advice and knowledge that so many people have been giving me! It's going to mean so much to me to put them all into practice and make this as easy as possible.