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

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