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.