Take That, Rituximab

I went in for for my remaining 360 mL of Rituximab today at 9:00 am. After they hydrated the piss out of me with another full litre of saline drip on the IV, they started the Rituximab at 9:30. Every half an hour they increased the flow to make sure I was handling it okay. I still experienced the same symptoms as yesterday - burning in my sinuses and stinging in my mouth/throat - but I kept myself occupied so I could just power through it. I finished at 2:30. Currently I am feeling a little bit green, but hey - no pain, no gain, right!?

Thanks again to my beautiful girlfriend Kaitlin for coming with me. Babe, this whole thing would be a thousand times harder without you by my side! Also thanks to my brother Jeffrey for popping in to keep me company for the last hour while Kaitlin went to work. Take a look at that picture - he even wore a suit for the occasion!

Aside from today's adventure, I'm starting to experience some of the side effects of the chemo. My fingers feel so weird and numb today, and it's been a little bit hard to use them. For example, Kaitlin brought some blueberries to share and she had to actually pick them up and place them in my hand for me a couple times. And when I touch the palm of one hand with the fingers of the other, it's the strangest sensation. It feels almost like I'm touching someone else's hand! I think I'm also starting to experience what they call "chemo brain". It seems like it's harder to focus and concentrate, and I'm also finding myself forgetting things that I shouldn't be forgetting. Crap... I was going to write something else here but now I don't remember what it was...

That's about all for today's post. It was a pretty uneventful visit today, but hey, I made it through my first round of chemo, so that's good! I'll probably post in a few days when I start experiencing more side effects such as my hair falling out.

Thanks for reading,
Christopher

Chemo Frustrations

Today I went in for Part II of my first round of chemotherapy. The reason I had to spread the chemo over two days is because the Rituximab is known to cause reactions, so the first time they administer it separately and slowly so they can monitor how my body is able to handle it. This photo is how I felt at the beginning. It is not how I feel right now. I was supposed to start at noon today, but just like Friday they were running behind. By the time I got into a chair and consumed one litre of a saline drip IV, it was getting close to 3:00 pm.

The Rituximab was fine at the beginning, but as they increased the speed of it, I started to have a bit of a reaction. My sinuses, eyes, nose, and throat felt like they were burning and it was hard to swallow. My breathing and heart rate were both fine, however.

I let the nurse know what was going on, and I was given an injection of Benadryl. Then she went away, and after quite some time she came back with the oncologist who said I was going to have to stop for now and come in tomorrow to do it all over again because patients need to be out of the agency by 6:00 pm and I wouldn't be finished by then.

I am extremely frustrated because another nurse had commented a few days ago about how I should try to get in earlier than noon because of how long the Rituximab can take. I took her advice and asked about it at my first chemo appointment, but was told that there was no room for me to come in earlier. I'm not sure why they would start me so late when they know it can take up to 8 hours to administer the Rituximab due to adverse reactions.

Now I have to do the whole bloody thing again tomorrow, but this time, starting at 9:00 am. I know I need to roll with the punches, but I'm pretty pissed off right now. Why didn't they schedule me to come in earlier today!??

The one cool thing is that they left the IV in my arm so they don't have to set it all up again tomorrow.

Christopher

A Ride in an Ambulance to the Emergency Room: The Scariest Night of my Life

Last night I went to Kaitlin's for our weekly "Sunday Night Dinner" with her parents. We had the usual fare; roast beef, mashed potatoes, and vegetables. Everything was great as usual, and my stomach didn't bother me at all when I ate, which is fantastic progress from half a week ago.

We were all just sitting around the table after we had eaten, and I was anticipating the belated birthday cake that Kaitlin's dad had made, when all of a sudden I noticed it was becoming slightly difficult to talk. It felt like a muscle had seized up in my neck; my lower jaw kept tensing and pulling backwards and to the right. I told Kaitlin and her parents that something was going on, and then I got up and walked around the living room trying to relax and get rid of the "charlie horse" feeling.

Unfortunately it seemed like it was getting worse, so I phoned my mom to ask her advice. I guess my speech was becoming noticeably slurred because my mom didn't waste any time in telling me to get off the phone with her and call 911. Hearing that really scared me, because I thought that maybe I was just having one of those muscle spasms that would relieve itself in a few minutes. I went to tell Kaitlin what Mom said, but we decided it would probably be fine if she drove me to the hospital instead of calling an ambulance. That was short-lived however, as the pain and tensing feeling began to work its way around behind my head, down my neck, and into my shoulders and upper back. Kaitlin's mom called 911, and I went to lie down on the couch; the seizing pain getting worse and worse.

The ambulance arrived in less than three minutes and two paramedics came into the house to check my vital signs, and ask what was going on. By this time the muscle seizing had become so bad that I could not even talk properly, so it was really frustrating to try to answer their questions, and I had to motion to Kaitlin to help me answer them. After checking to make sure my heart rate and breathing were, as of yet, unaffected, the paramedic said "well, there's not much we can do at this point except offer you a ride to the hospital." Kaitlin and I followed them out to the ambulance while Kaitlin's dad got in his car and raced to my house to get all my medications and cancer binder with the plan of meeting us at the hospital.

The ride in the ambulance seemed to take an eternity. The paramedic sitting in the back with me was really friendly, but that became an annoyance because I was finding it nearly impossible to talk by this point, and I had to tell him I wasn't going to be able to hold up my side of the conversation. 

We arrived at Royal Jubilee Hospital in about 12-15 minutes, and I was escorted into the emergency ward reception area where Kaitlin's dad was waiting with all my stuff. After answering a bunch of questions about what was going on, they brought me into one of the rooms and a nurse began checking my vital signs, and asking me to describe, as best I could, what was going on. By this point I was hunched over and my jaw was permanently pulled back and to the right, so I sounded and looked like I was having a stroke or something. Kaitlin's dad called me Quasimodo.

After being checked out by a doctor, I was told to hang in there for a bit, as they needed to wait for a specific drug to arrive from the pharmacy. I sat on the chair shortly, and then went to lie on the gurney in hopes that getting off my feet might help to relax my spasm-inflicted muscles.

During this time Kaitlin talked to my mom again, who diagnosed the problem over the phone: She believed that I was having some kind of reaction to one of my anti-nausea medications, Prochlorperazin (Stemetil). Click that link to Wikipedia and scroll down the page to "side effects" for a pretty good description of what happened to me. The doctor came back a few minutes later to check on me and was very impressed, in his words, that "a pediatrician is able to make a diagnosis over the phone like that." You rock, Mom. She was correct though, of course; the doctor agreed that it was some kind of "lock jaw" reaction. Within a few minutes the nurse was giving me a needle and saying I should be feeling better within 20 minutes. As I lay on the gurney, Kaitlin sat beside me and rubbed my back and shoulders in a somewhat successful attempt to relax me.

It took closer to half an hour I think, but the muscle spasms slowly-but-surely subsided, and I was able to sit up and talk normally again. The only thing that was left was a great deal of tightness in my back and shoulders, and a couple of terribly shaking hands. After getting some pills and instructions from the doctor, we were able to leave, and Kaitlin's dad drove us back home.

As I am writing this, my hands are still shaking thinking about how indescribably scared I was last night. I am not exaggerating with the title of this blog post even in the slightest. I have never felt so completely powerless in my own body; so weak and so out of control. There are tears welling up in my eyes as I think about how worried I know I made Kaitlin, my parents, and her parents, and I am truly sorry that they had to be put through something like that with me. I know that there is nothing I could have done, so an apology is unwarranted, but I still feel bad about the whole thing.

So that was my Sunday Night Dinner Adventure for May 27th, 2012. I am going for Part II of my first chemo treatment at noon today, so if anything eventful happens this afternoon I will blog about it tonight or tomorrow.

Thanks for reading, and again, I'm sorry to those of you closest to me for having put you through such an ordeal. I definitely won't be taking Stemetil ever again.

Christopher

Post Chemo Breakfast

This is just going to be a short post, but I thought I'd write it anyways because I love food and maybe someone else will see it and think "hmmm, maybe I'll try this for breakfast too!" Today I am getting waves of nausea from the chemotherapy, but the most important thing aside from my anti nausea medications is to keep hydrated and keep eating. So here is my post-chemo breakfast: Combine 1/2 cup each of orange slices, banana, frozen blueberries, vanilla soy milk, and yogurt in a blender. Mix until smooth. Enjoy this alongside an English muffin topped with peanut butter homemade strawberry jam & cheese. It seems to be sitting well right now, and it also filled me up pretty good, which is weird because usually at this time of day I could eat a cow! ~ Chris

Radioactive Man

I had my first chemotherapy appointment from 2:30 - 5:30 today. The nurse went over everything with Kaitlin and me, and once I was comfortable she set up the IV line and started the first drug, which was bright red. Guess what colour my pee was, 30 minutes later? Wrong... it was fluorescent orange. I thought that was pretty cool, but Kaitlin just shook her head and snickered at me. I guess she doesn't appreciate the finer things in life... like highlighter orange pee? Ah, but I love her so much! Anyways, the syringe I'm holding in this photo is that first drug, Doxorubicin. After the nurse administered it to me manually, she hooked up three other bags to my IV line - Cyclophosphamide, Vincristine and a saline drip to keep me hydrated. The Vincristine was weird, because it made me feel like my sinuses were kind of aching and burning. Apparently that is quite normal!

Anyways, once the other drugs got started, I pulled out my camera and asked the nurse to take a photo of us. Another nurse overheard, and said (very loudly) "Awwwwwwwww that's so CUTE!! This must be your first chemo appointment!! Awwwww look at you two!!" to which all the (old) people in the room laughed. Then they noticed that Kaitlin and I were (accidentally) wearing matching clothes, and the whole thing just got worse. I don't know why, but this often happens to us... we meet to go out somewhere and we're dressed the same. I swear we don't plan it!

Kaitlin and I just sat around for the first couple hours of the treatment. We talked and held hands a little, I played on my phone, and she read a book. During the last 45 minutes of the session, we watched Season I, Episode I of the TV show 24 on the portable DVD player that she got me for my birthday, which was pretty cool. Everyone there was really friendly, and all-in-all it wasn't a horrible experience.

About an hour after the session, I started to feel pretty tired, and after a small dinner, I could really start to feel the nausea kicking in. I'm on three different anti-nausea medications right now and I can tell that they're fighting it, but it's a really fine line. I hope this passes soon.

Another interesting thing is that when Kaitlin kissed me this evening, she made a "ewww something's weird" face each time, and said that she could taste the chemo on my breath. She said it wasn't bad breath, per se, but it tasted like chemicals. That's a little creepy, but to be expected I suppose. That, along with the fluorescent orange pee, and you might as well start calling me Radioactive Man.

I think that's all I'm going to write for now, because I'm exhausted and starting to ramble. In the time that it's taken me to write this I've started to really feel icky, and I'm starting to fade, so I guess I'll concede and call it a day. Maybe I'll write more tomorrow. I guess I can be proud of the fact that I made it through my first chemo treatment ever, and while I still have a long road ahead, it feels good to know that this it the beginning of the end of my cancer.

On Monday I will be going in to the cancer agency for the second half of Round #1, because they still have to give me the Rituximab. Apparently people can have quite adverse reactions to this drug, so the first time they'll administer it separately and slowly, i.e. over 5-8 hours. If it goes well, then my remaining chemo treatments will be 3 hours long, and I will take all the CHOP-R drugs at once.

One more thing: The doctor called tonight with the bone marrow biopsy results. The cancer has not spread to my blood, so it is basically localized to my anterior mediastinum and my abdomen. That is good, I'd say!

Thanks again for reading.

Peace & Love,
Christopher

Birthday Biopsy & Endoscopy

Today I spent my 27th birthday in the hospital. Literally... all... day.

This morning I went for my bone marrow biopsy, so they can test to see if the cancer has spread to my blood. The reason they do this is because it helps them to determine the "stage" of the cancer, i.e. if it's either I, II, III or IV. Obviously a lower stage is better because it means the cancer is still localized to my anterior mediastinum.

The doctor and the hematology lab technician were both friendly. I told them it was my birthday and asked if Kaitlin could maybe take some pictures of the procedure for me. They lab tech said he had heard weirder requests in his time, and that we could totally take pictures if we wanted. He told us that one time a woman came in for a biopsy and she insisted on playing a musical instrument during her procedure, and then she and her friend sang together in harmony. Say whaaaaaaat?

The procedure itself only took a few minutes. Basically the doctor froze the skin above my back pelvic bone. He then stuck a hollow needle the size of a screw driver into me. It didn't hurt too much, but it was a weird, unnerving feeling because he had to use a lot of force to actually push it into the bone. The only part that really hurt was when he sucked out the sample of bone marrow: I would equate it to the feeling of having a loose tooth that isn't quite ready, and somebody yanking on it as hard as they can. The excruciating pain only lasted a 3-4 seconds though.

The really funny thing was that when the doctor found out I wanted some photos, he said "great, I can use them when I teach my med students!" Consequently, he kept stopping the procedure to say "okay Kaitlin, come over and get a picture of this part. Oh... no... actually get it from this angle... here... yeah... right there... perfect!" Anyways, click on the photos to the right if you wanna get in nice and close!

My second birthday present was an afternoon trip to the ambulatory care centre for an endoscopy. The reason I needed to have this procedure is because I've been having really bad stomach pain for several weeks and my oncologist wanted to see if it was from an ulcer, or if the cancer had spread to my stomach. The procedure was supposed to be at 2:00 pm but one of the doctors was away sick so it actually ended up being way later. I got put on a gurney at 2:30 or so, and was hooked up to an IV line with a saline drip. I had to lie there and wait until 4:15 to have the procedure, which sucked, because I hadn't been allowed to eat since midnight and I was tired, starving, and bored; the latter because Kaitlin wasn't able to book work off in the afternoon so I didn't really have anyone to keep me company. I got the nurse to take my photo and she said, jokingly, "You look way too happy for what we are about to do to you!"

Eventually (after I sneaked in a 30 minute nap) they wheeled me into the operating room and the procedure finally got underway. They sprayed some NASTY tasting stuff into the back of my mouth to numb my throat and subdue my gag reflexes. It tasted like the world's worst cough medicine and really stung. Then the nurse put a sedative into my IV line so I would relax. Once all was ready, the doctor put a long tube with a camera and a light into my mouth and said "swallow" ... gag gag gag ... once the tube was on it's way down my throat it wasn't too bad though. The whole thing took about 20 minutes and when it was over I got wheeled back out and once I was more coherent, the doctor came to talk to me about what he had seen.


Unfortunately the endoscopy showed that the cancer has spread to my stomach. The circled part of the photo is cancer, and the white part on top of the lump is an ulcer, which explains the pain I've been having. While it is bad news that my lymphoma is spreading to other parts of my body, there isn't really much else that they can do about it at this point. My chemotherapy treatment will still start on Friday, and will still be the same regiment as previously mentioned.

Anyways... thanks for reading, and stay tuned for my next post which will probably be on Friday.

Namaste,
Christopher

The Adventure Begins

On May 11th, 2012 I was diagnosed with a type of cancer called Mediastinal (Thymic) Large B-Cell Lymphoma. Here's the back story:

In February 2012 I began to develop chest pain and a pretty bad barking cough. After a few days I went to a walk-in clinic and they gave me a prescription for the antibiotic Biaxin (Clarithromycin) to go along with the diagnosis of bronchitis. PS: If you go to any walk-in clinic with a barking cough, this is what they will do. I probably had a virus, so the cough eventually subsided, but never really went away. I also began to develop a wheeze whenever I exerted myself cardiovascularly. This was really frustrating because it forced me to stop exercising. In a typical week I will do a 5 km run 3-5 times, do weight training 3 times, and when the weather is nice I will often go out on the weekend for a fast-paced 25-50 km ride on my road bike.

Near the end of March, the cough started to get worse, and began to interfere with my normal day-to-day activities. I was on my final teaching practicum as part of the UVic Bachelor of Education program, and I had to take several days off because I was unable to speak more than a few words without going into a spastic coughing fit. 

On March 25th, I went back to a walk-in clinic and told them what was happening. Thankfully the doctor took a blood-oxygen level reading, and noticing it was low, sent me for a chest x-ray. It took me a few days to get around to it, but on March 28th I went in for one. My phone rang two hours after I got home. It was the clinic telling me that I needed to come in for an urgent appointment After sitting me down and making some frustrating small-talk, the doctor told me that the x-ray results showed I had a large mass on my anterior mediastinum, most suggestive of Lymphoma. He had already sent an priority request for a chest CT scan, blood work, and an ultrasound, and had referred me to a cardiothoracic surgeon here in Victoria.

On March 30th I had my CT scan at Saanich Peninsula Hospital. The results showed a large anterior mediastinal mass, measuring 13cm x 9cm x 7cm, "most suggestive" of a germ cell tumor.

About a week after getting these results I had my first appointment with the cardiothoracic surgeon. He was really nice, and said that he had requested a CT Guided Core Needle Biopsy of the mass at Royal Jubilee Hospital. This is so that he would be able to determine exactly what was going on with the mass, such as if it was benign or malignant.

It took several weeks to get my biopsy, but on April 20th I was jabbed 7 times with a long hollow needle, and they sucked out some samples of the mass.

Eleven days later I got a call from the cardiothoracic surgeon. He was extremely apologetic, informing me that the Radiologist and Pathologist at the hospital had, for reasons unknown to him, elected to perform a Fine Needle Aspiration instead of the biopsy he had asked for, and because of this he had not gotten the results he needed. Needless to say, my parents, Kaitlin (my girlfriend) and I were extremely frustrated and angered by this, so after some swift and strongly-worded communication with the hospital, I was scheduled for another biopsy two days later, on May 4th.

I should note that during these past few weeks my cough had gotten worse, and I was becoming progressively more fatigued. I was unable to work more than 10 hours per week, and as much as I tried to get outdoors and engage in mild exercise, I actually had to spend a great deal of my time sleeping. I also developed an excruciating stomach problem during this time, which made eating and drinking extremely painful.

On Friday, May 11th, I returned to the cardiothoracic surgeon for my biopsy follow-up appointment, and was informed that I had a subtype of Diffuse Large B-Cell Lymphoma, called Mediastinal (Thymic) Large B-Cell Lymphoma. Since then, there has been some debate as to whether I actually have the subtype, or just Diffuse Large B-Cell Lymphoma, but that will be determined after I undergo a few more tests. 

I was referred to the BC Cancer Agency and on Thursday, May 17th, I had my first appointment with my oncologist. Sitting there with my parents and Kaitlin, being told all the details of my cancer, and treatment, was an extreme informational and emotional overload, to say the least. My type of cancer spreads quite quickly, and so the speed of which things are happening now is way faster than before, which is somewhat of a relief. I was immediately put on several drugs: 

• Prednisone - This is a very commonly-prescribed anti-inflammatory. It will begin to break down my tumor and fight the cancer. Common side effects are hyperactivity, trouble sleeping, grumpiness, and puffy cheeks & joints. So far it's just preventing me from sleeping at night.
• Allopurinol - This is to protect my kidneys from the cancer cell waste (uric acid) that the Prednisone creates.
• Pantoprazole - This is for my stomach pain. Apparently I may have an ulcer.
• Septra - This is to protect my body from a specific type of pneumonia or something.

I was also booked into the hospital on May 22nd (my birthday) for a bone marrow biopsy in the morning to see if the cancer has spread to my blood, and a gastroscopy in the afternoon to see if the cancer has spread to my stomach. I think my 27th birthday "party" is going to be the best one yet: Nothing beats having bone marrow drilled out of my hip, and then having a long tube with a camera on it shoved down my throat into my stomach! Oh well... all I can do is keep my fingers crossed that these tests will show that the cancer has not spread yet. The less it has spread, the better!

I have been scheduled to start my chemotherapy on May 25th. The kind of chemo I'm doing is called CHOP-R. Click on that link to see the exact same information booklet that I got from the BC Cancer Agency. Basically I will go in every 21 days and get hooked up to an IV line for a few hours. I will undergo six rounds of chemo over the next few months, and at the end of it I will be tested to see if the cancer is gone. If it is, the chance of it coming back is less than 10%. If it isn't gone, I will undergo more chemo, and begin radiation treatments.

Some of the common side effects of my chemotherapy are progressively worsening fatigue, full hair loss, and becoming very prone to infections. My immune system will be completely destroyed by the chemotherapy, so any sort of infection can be quite dangerous. A cold or a cut can quickly spread to my blood, so at the first sign of fever, I would have to go to the emergency room at the hospital. Scroll down to Page #3 of this CHOP-R booklet to read all about the other exciting possible side effects.

I think one of the hardest parts so far has been that my lifestyle has completely changed. As previously mentioned, I am normally an extremely active person, but have had to give most of this up. As I also mentioned, I recently finished my teaching degree at UVic. One month after I finished practicum I was hired onto the TOC list in SD62 (Sooke). Unfortunately, now I don't think I'll actually be able to do any teaching until the fall, and I was really looking forward to getting started in June!

So... that is pretty much everything up until the present time! I think this first post will probably be the longest, because so much has happened in the last couple months. From now on I will just post each time something interesting or significant happens; such as when I go for chemo, and when my hair all falls out, and that sort of thing. If you want even more details about what's happened so far, just send me a message. There's always more to say, but this post is getting just a little long.

I would like to finish off by saying that I have so far maintained a very positive outlook. I have very high hopes for beating this cancer. I am also doing my best to look forward, and get over the frustrations that it has been nearly two months since I got an x-ray that showed I have a very fast-spreading cancer, and I am only starting treatment now. I am indescribably thankful for all the support I have received from my parents, Kaitlin, family members (from both families), and friends. I am in awe at how many people have approached me to say "I know someone with cancer" or "I have cancer too" and "we are all here for you no matter what you need." Obviously this whole experience has been extremely trying, and I don't know where I would be without the support of those who care about me. I know I have some really difficult times ahead of me, and it is comforting to know that I will not be tackling them alone. 

Lastly, if you don't know why you are here reading this, please check out this page. Feel free to leave comments on my posts too... it keeps this whole thing alive and vibrant! More posts to come :)

Thanks for reading,

Christopher