The One Where I am Too Tired to Post

Hello, friends. I'm really sorry that I haven't posted something in a long time. I've been meaning to, my parents have said "people are asking about you...when are you going to write again?", but until now I just haven't gotten around to it. Sorry!

First of all, catch up: As I posted about four weeks ago, I am in complete remission or CR. This news came after my last PET scan - it came out completely clean. Because of this, I was eligible for either four more treatments of chemo or 12 treatments of radiation. Both had pros and cons: chemo put me more at risk for heart problems, acute leukemia, and lung problems; radiation puts me at risk for thyroid deficiency, second cancers (specifically skin and breast), and radial pneumonia.

I opted for radiation because of the fewer risks because my treatment plan would be much lower. I'm getting about half the amount of radiation that people normally get, so while I am very tired, I'm not even getting a sore throat. I'm very lucky! Chemo would have continued to make me sick, exhausted, gain weight, and immuno-deficient.

Radiation. What's it like? Well, I go down to Manitowoc every day for an appointment at 2:00. I leave campus around 1:00 and am back around 3:30 or 4:00 (depending on if the doctors are on time at the cancer center). When I was getting prepared for radiation, I had to go through what's called a "sim". At the sim, I had a plastic mask fitted tightly to my face which keeps it from moving while I'm getting treated. Normally people are marked with permanent tattoos, but because the mask covered all the targeted areas, I got to bypass this and they just sharpied the targets onto the mask itself.

A Tomo Therapy machine like the one I use for treatment

When I come to a treatment, I have to put on a hospital gown. I then lie on a table (a lot like in a CT machine or PET scan), with a triangle prop under my knees and a warm blanket on top of me. Then the mask is strapped onto my head, and I have to adjust my breathing to keep from getting claustrophobic. If you are currently about to get radiation and have to have a mask: practice deep breathing through your nose. This will keep your blood pressure lower and make the experience a lot easier.

First I get a body scan to make sure I am in the right position. Then I am pulled back out while the doctor checks and gives his approval for me to get treated. Then I go back into the machine (which is shaped like a donut) for about seven minutes. Then I come back out, get unstrapped, and go back home.

Here's how I look after the mask ;)

I can't feel the radiation when I'm getting it, but I know which areas are being zapped because my skin has started to break out there. Otherwise, I haven't had any bad side effects.

Radiation is a lot better now than it was 10 years ago. Mine is called "Tomo Therapy", which has the capability to pinpoint within a millimeter where the cancer is or was. By no means is my whole neck and chest being radiated - only very specific places. This lessens my chances for second cancers by a lot.

The hardest part about radiation is definitely driving back and forth every day. My music is sadly lacking after spending two hours in the car each day. I did discover today that I uploaded an audiobook to my iTunes about a year ago and it came up in my all music shuffle - so I'll listen to that tomorrow :) The book is Anna and the French Kiss and it's amazing, adorable, and completely fluffy. Highly recommend if you want something fun to read.

Thank you again to everyone who's been with me through this whole journey :) I've gotten so many messages congratulating me on remission - this means so much to me.

Current symptoms/side effects/complaints: Only tired and a little bit of acne. Definitely better than before!

The One With Radiation? Maybe?

Radiation? Is that a thing we actually have to talk about?

At the beginning of this ordeal, we were given a paradigm that outlined the steps to curing my Hodgkin's lymphoma. It goes: Biopsy (check), PET scan (check), 8 things of chemo (almost check!), PET scan 2.0, and then the choice between two weeks of radiation and four more things of chemo.

So far, we've gone along with the assumption that radiation is really bad and scary and potentially dangerous, and that chemo was definitely the lesser of two evils. I resigned myself to another two months of feeling groggy, shaky, and under the weather, as well as potentially putting myself at risk for getting sick (thanks immuno-suppressors).

But after meeting with the radiation oncologist last Thursday, things sounded like they could potentially change. He explained that while radiation is an every day procedure, it only lasts for two, maybe three weeks. And while the area they would be targeting could potentially put me at risk for breast cancer, it is a pretty low percentage of people who get a second cancer due to radiation. If I went with radiation, I would have to take this risk, but I would be done with everything in November instead of December and hopefully start getting my life back in alignment.

Chemo now sounds like it has a lot of other negative side effects, including heart disease (which I'm already at risk for), leukemia, and lung toxicity. This would also completely bring my immune system down to 0 by the end of treatments, which would mean being extra careful while all of my peers are getting sick with colds and the flu.

No matter which I end up choosing, I don't really get to "win". Both have bad side effects and only a couple of advantages. I almost would rather have someone else choose for me, at least so I can "blame" someone else later on if something goes wrong. I know blame is the wrong thing to be seeking now, and it will be no one's fault if I get a negative side effect, but that's how I feel.

Friends who have gone through this (I'm looking at you, Melody! :)) what advice do you have? Are there any other reasons to choose chemo over radiation?

Current symptoms/side effects/general complaints: A lot of shakiness. My handwriting looks like that of a second grader. Little nausea.

The One Where I Never Know What to Say

You know what's hard about having cancer? Telling people you have cancer. There's no easy way to go about it.

For me, this always comes up when I explain my housing situation. Most people think I'm living in VMC with my three friends Mary, Megan, and Molly, like the plan had been last spring. Once I tell them I'm in Hugh, there's an awkward beat where I have to figure out how to explain why. Here's how the conversation goes down:

"So where are you living this semester?" asks unassuming acquaintance.

"Hugh Hall, over by Lot 12/Premontre and Xanten/in the facilities building." I say.

"Oh really? Why?" prompts the confused sophomore, wondering if I am an outcast loner now or filthy rich.

"Ummm...." And here the conversation can go a couple different ways. I might try to make a joke, as I did with Makhayla's roommate (turned awkward real fast, not doing that again). So usually I will say.... "I actually got diagnosed with lymphoma/cancer this past summer, so I had to get a private room and bathroom." I try to rush those last details so I don't leave the sentence on "cancer".

The other person has no idea what to do with the information I just gave. Do they say sorry? Ask me how I'm doing? Say they'll pray for me? (also sorry for the lack of singular/plural pronoun agreement in that sentence but writing he or she would just be annoying).

And then I say, "yeah, but I'm so happy to be back here...." <-- trailing off into long monologue about how great St. Norbert is and how crazy I would be going at home and how great everyone is, etc.

The poor friend, still talking to me for some reason, has got to be so uncomfortable at this point. How do you react when someone tells you they have cancer, even if it's a curable one and only stage 2? I have no idea. I don't even have a way that I wish people would react.

Be nice if someone would give me a script though, for how to tell people what's going on. I don't want to make it a big deal, because to me (even though it is) it's only a small part of who I am - though I feel like I'm talking about it all the time. I also don't like to make people awkward and uncomfortable, but I know that I do. It's hard and weird and I don't like it.

Hopefully as time goes on, people just talk about it amongst themselves and everyone gets on the same page. Thankfully, almost all of my friends already "like" this blog and page, so I didn't have to individually tell everyone. Thank you, internet!

That's another thing. It is SO much easier to tell people virtually rather than face to face. Because then I can lay out all the details - stage, type, curable, treatments, etc. - and everyone can digest it at his or her own speed. Then they can type out an equally thought out reply, getting all their feelings down, and we can have a nice conversation about it or something else. But when I just spring it on them...no one wins.

If you have any tips for me, especially cancer survivors, on how you have/would deal with this, please let me know.

Chemo number 6 is 6 days away! Officially starting them on Fridays now instead of Wednesdays. After this one, two more until the PET scan!

Current symptoms, side effects, and complaints: Hair thinning like crazy. I am amazed every day that so much can fall out, but I still have a full head of hair on my head. If I had thinner hair, it would easily be all gone by now.

The One Where I'm Back at School!

With chemo number five under my belt, I moved back into St. Norbert yesterday afternoon. I love my new room (it's HUGE) and am so glad to be back with my friends.

A panoramic picture of my room

Some things that I brought with me from home that I think will be helpful:

A Brita Water Pitcher: I know how important it will be to stay hydrated throughout this semester, so my goal is to drink one full pitcher a day. So far, it hasn't been hard!

My car: Having the Accord with me will help me to get to and from labs, the grocery store, and home if I ever need to recuperate there.

Knitting/Entertainment supplies: While most of this semester will be spent writing papers, I know I'll need a lot of time to relax and stay healthy. I have designated two drawers already to fill with knitting, DVDs, and my coloring books.

Thank you, as always for your continued prayers and support.

Current symptoms/side effects/complaints: Nothing! :)

The One with a New Side Effect and the Side Effect I Forget About Every Time

Been a while since I've posted a blog, sorry about that. As for general updates, last Wednesday I had chemo, which was the fastest round I've ever had (shout out to the HFM pharmacy for bringing me drugs two at a time). My grandma on my mom's side was able to come up and spend that time with me, which was really nice!

And the cancer center told me that they have a fund which sends families on mini trips, out to special restaurants, and fun stuff like that, so this fall I will be going to see Wicked again in Milwaukee! (For those of you who know me well, yes, this will be the fourth time).

The weekend before treatment I was able to spend time in Chicago at the Interfaith Youth Core learning valuable skills I will use in my internship this fall at the peace and justice center. I got to see more of my dad's side there and have a great dinner especially with my grandma! If you are ever in Chicago, check out Cafe Ba-Ba-Reeba. The manager was so wonderful. My grandma didn't think we would be able to get a table, but she called and explained that I had been there once before when I was three with her and my parents, and now I was sick, and asked if they could do anything. Julie, the manager, made sure we got a table in back (away from the crowds), came out twice to check up on us, and gave us three desserts (it's a tapas place so they were small, but so delicious), on the house. She just asked us to pay it forward :) Eat here if you can and support such wonderful people!

These past two weeks have been a whirlwind of fun, but they've also taken a lot out of me. Chemo treatments definitely build as they go on, and this last one was pretty hard. I think for me, the first three were like "yeah, man! Gonna go get the treatment and it'll be better and we can all go home and get on with our lives. Whoopee!" Not so, my friend. I know in my head that I'm making progress, but when a minimum of eight more treatments are stretching out in front of you, and you've already done four, it's a lot to take in. I think the emotional effects of cancer are going to start being more pronounced, which is why once I get back to school (11 days!) I'm going to start visiting a counselor. I think it'll be really helpful to get an outsider's perspective on what's going on and hopefully take home some valuable tips/advice on how to deal with the stress and anxiety.

(Sometimes chemo makes me mad like this^)

Wow. Already a short novel. On to the new side effect. Around Saturday I started to get a weird taste in my mouth, almost metallic-y. My tongue was swollen, and as the days went by my mouth just felt itchy. After I would eat something, it was as if I had a bunch of small cuts on the inside of my mouth and bit into a lemon. So these past couple days I've been experimenting with foods, seeing what I still like and what's tabled for now. Tomatoes and anything acidic are out for the time being. Beef stroganoff, sandwiches with little flavor, and creamy soup are in. So if you have any really bland recipes, shoot them my way :) Really hoping this a short term side effect!

The side effect I forget about every single time: the muscle aches. Every Monday after chemo like clockwork, my back and shoulders try to force me to believe that I just worked my heart out at the gym. Confused, I wonder to myself, "but I don't exercise...." It's the steroids. After I stop taking Preganzone on Saturday, my body begins to put itself back together like a body builder's. This makes sleeping and just general comfort hard to come by. But for some reason, I'm always surprised when it happens again.

Oh! And my hair has been thinning! Most of it is still holding strong to my scalp like a champ, but seems like with each treatment more decides to thin out. I've noticed it mostly when showering, but this morning woke up to a nice amount on my pillow. We'll see if this is where it plateaus out or if I'll be rocking the bald is beautiful this fall.

Current symptoms, side effects, and complaints: hair thinning, sore shoulders, weird tongue/mouth thing, little nausea (but not so bad this time)

The One to Other People with Hodgkin's

Hello,

When I found out I had Hodgkin's earlier this summer, I met a lovely girl who had gone through the same thing two years before me through her blog. I emailed her, and she was great at answering my questions about treatment, diet, hair loss, and everything else I could think of. I'm now extending the same invitation for any Hodgkin's fighter (or any cancer really, but I will be most helpful for Hodgkin's patients). It's always better to know than to wonder!

If you are a cancer fighter or a caregiver with questions, feel free to email me them. I'll do my best to answer them, and I promise to respond as quickly as possible.

Best wishes,

Maggie

The One with the Different Chemo Drugs

2 down...6 to go! Until the next PET scan that is, but hey, at least we have a check point.

Today I'm going to explain the four different drugs of my specific chemo cocktail and what they each do to me. But before that, some general Maggie updates. Summer is very quickly losing its taste for me (it always does in late July) and I am eagerly anticipating the day when I can start packing up for school. At this point, I don't see any reason to miss this semester, especially since SNC has provided me a private room and bathroom. Thanks St. Norbert College :) I am also in a winter/holidays state of mind, so today my work has consisted of listening to Christmas music while I play with spreadsheeets.

Last week's infusion of chemo went a lot better than the first one. We opted not to have the drug that really knocked me out, an anti-nausea drug, and I'm glad we did. I had plenty of other things to keep my stomach happy. I did get tired toward the end and felt really jittery from the steroid.

The infusion goes like this: I have four different chemo drugs, and each has to be administered differently. The four drugs are: adriamycin (doxorubicin), bleomycin, vinblastine, and dacarbazine (ABVD). Usually they go in that order, but because I had a minor reaction to bleo the first time, they ran that one first.

Bleo is clear and comes in a drip. They started me off with a test dose and then gave the full dose, which took a total 20 minutes. It can really mess up your lungs, hence my pulmonary test way back in June. If I had had problems with my lungs already, I probably wouldn't be on this regimen of chemo. After that was adriamycin, which is a bright red drug that causes the hair loss and is administered in a syringe that my nurse slowly pushes into my port. Adrimycin is used in a lot of cancers, and in addition to hair loss also can cause heart damage - so doctors monitor regularly for that.

Vinblastine follows, and while that's also a drip, it's a really fast one. It's clear like Bleo, but since it rarely causes any reactions the nurses don't have to do a test dose. Apparently it can cause nerve damage, but so far I haven't noticed anything. Dacarbazine is the last one of the day, and it takes FOREVER. I think this is the one that makes me tired. It takes a half hour, and at this point in the day I am just not having it. It also causes the most nausea, but with so many anti-nausea drugs most Hodgkin's patients don't have problems with nausea.

So those are the four chemo drugs. Let me know if you have any questions!

Current symptoms, side effects, and general complaints: Nothing, except my cold sore won't go away even with medicine. Might indicate that my body's having a harder time fighting infection.

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.

The One on the Day Before the PET Scan

Thank you for all the support I've received over these past several hours! I'm so blessed to have so many people praying for me and thinking of me.

Tomorrow afternoon I go in for my very first PET scan. For those who watched The Fault in Our Stars, you might have a general idea of what this is:



So in a PET scan, they inject a sugary glucose into you and make you lie on your back for 1.25 hours in a quiet room without music, audiobooks, TV, or even a person to talk to. After the injection has traveled all over, an imaging machine will scan for anywhere that the glucose "lights up". These spots indicate tumors and cancer - because tumors are the "greediest cell masses in the body and want all the sugar" (in the words of my ENT). This'll help stage the cancer, 1, 2, 3, or 4, which will help in deciding treatments. Currently, I'm expecting to light up on the right side of my neck and in my chest.

Unfortunately for me, a PET scan also means that for a full 24 hours before I cannot eat any carbs or sugar, which, it turns out, are in everything! This would have been ok, I'll just eat meat and cheese all day, I thought. It'll be fine. Little did I know that over the weekend Hope House received donations of an apple pie, cake pops, potato chips, corn, potatoes, and cookies as far as the eye can see. And suddenly cheese and tuna salad (without bread) is way less appealing. Thank you to my mom for making my lunch more than just a brick of bacon cheddar cheese :)

Note to future me or anyone else preparing for a PET scan: make sure favorite cheeses are stocked in the fridge two days before the PET scan. Have a firm plan of what you're going to eat so you don't just stand in front of the pantry thinking "there is absolutely nothing here." Make your favorite (PET-approved) vegetables into cute shapes. And then also have a completely fabulous meal planned for after the PET scan (go in the morning so you can eat a carb and sugar filled lunch). Right now I'm planning on Culvers :)

Current symptoms, side effects, and complaints: I WANT TO EAT ALL THE FOODS I CAN'T HAVE.

The One about the Diagnosis and Backstory

Hi everyone :)

This whole thing has been pretty surreal. People talk about how teenagers think they're invincible, and until a couple ago I definitely thought I was. And as hard as you would expect this to be, I'm excited to have you all in on this process.

This past April, around Easter, I noticed two enlarged lymph nodes really near my collar bone on the right side of my neck. After they stayed for a couple days, I began to assume I had mono as two of my best friends had earlier that semester. I showed my mom who set up an appointment at the Holy Family Walk-in Clinic in Manitowoc. The PA there told me that I either had p(somethingsomething) rosea (a weird rash thing) or mono, but if nothing showed up in three weeks to come back in, and they would check me for something worse like lymphoma.

Woah. Didn't like the sound of that. She assured me that in her ten years practicing she had never diagnosed someone with lymphoma, and that I shouldn't worry about it. But of course I did.

I got back to school and told my three best friends and roommates that this was a possibility. They were all great and assured me that it was probably nothing, the statistics were on my side. My boyfriend Henry and my family said they same thing. So I tried not to think about it. And, failing that, tried not to compare the symptoms I had found on Mayo Clinic to what was going on with me.

I got really sick late April with a bad cough, fatigue, and nausea (sorry again to everyone in Bergstrom that I woke up with my cough). This lasted about ten days. Special shout out to Mary Holz who brought me hot tea and kept me company through it all :) I went to the doctor four times - three times at school and once in Manitowoc (thanks for getting me there Molly) - and each time I was tested for mono, strep, or any of the regular infections. Nothing. Finally I got some medicine that made the cough better. But the lymph nodes did not go down.

When I got back home, my ENT prescribed three weeks worth of antibiotics and ibuprofen to try to get them to go down. Nothing. We called again and when I went in to visit Dr. Butler on Wednesday, June 3rd, she took about 15 seconds to tell me that my lymph nodes were "large, firm, and in a bad place. We're going to have to biopsy."

The very next day I was in the hospital for a CT scan, chest X-ray, and blood tests for a bunch of really weird but better than cancer diseases. When we had our follow-up we found out that each came out negative, but the chest x-ray had shown that lymph nodes I couldn't even feel were taking up too much room under my sternum, and the ones on my neck were larger and more in number.

The biopsy two days later (last Thursday) confirmed that I do have lymphoma - most likely Hodgkin's Disease. This week I'll have a PET scan and my first meeting with my oncologist, which will most likely be followed by a bone marrow biopsy (just as fun as it sounds).

Current symptoms, side effects, and complaints: fatigue and not much of an appetite

If you need to talk, feel free to text, email, FB message, etc. Otherwise reading comments are fun!