Round 2

I'm feeling relatively good on this second round of chemo. I switched the Prilosec to before breakfast, and that seems to be helping with the upset stomach. Unfortunately, I've developed an irritating sore throat. No clue of it's a cold or allergies. It is cherry blossom season...so hopefully it's just allergies. I don't even want to think about going into my possible neutropenia phase with an active viral infection. The norovirus and C-diff was enough.

It's been....interesting...losing my hair. If you've ever seen the movie "Shallow Hal," it's a bit like that. I've been forced to look beyond my external appearance and see myself as I am on the inside. It's an act that I'm not really sure I could have truly done without going through this experience. Or maybe it's something I would have never tried to do. I encourage everyone to take a few minutes and look beyond what you visually see in yourself. It's not easy.

What's more interesting is that the concept of looking beyond what I can see has extended to others as well. It has already become second nature to see others for who they are and not what they look like. I thought I was already like that, but perhaps not as much as I thought. This whole thing has been a mind warp. Maybe this chemo is doing more than just killing my cancer.

Finishing up Cycle 1

I start Cycle 2 tomorrow; so let’s see if I can finish writing about Cycle 1 in this post.

Recap: I finished my Cycle 1 chemo and underwent a procedure in interventional radiology to remove a blood clot. Drugged up and loopy, I was wheeled into the Special Clinical Studies wing of the hospital (there were no available beds in the oncology area).

This is where the story gets interesting.

The Special Studies wing was originally built in preparation for an Ebola outbreak. We passed through multiple double doors into a hallway with rooms monitored for negative air pressure lining the left wall. To the right was a large room with a big screen TV, gaming console, and snack bar. The nurses’ station was centrally located in a plastic enclosed unit. Beside each hospital door, pictures were painted directly onto the wall (in case of psychotic episodes?). I was wheeled into one of the first rooms.

The room had two beds, but thankfully I would be the sole occupant for the night. I chose the bed by the window. Exhausted, I just wanted to go to sleep—it was only noon. Instead, I met my nurses and ordered lunch since I hadn’t eaten yet that day. Jason and my mom wouldn’t be able to spend the night, and I tried to enjoy the company while I had it.

During my entire first cycle, my night in the hospital was by far my worst (and that includes some fun stuff you’ll read about in a few minutes). My family went home, and I was left scared and alone in a pressure sealed room with pictures painted on the wall. I had a tube going into my left arm with a heparin drip, which was keeping my blood super thin, and a tube going into my right neck with a saline drip. The tubes all attached to a machine that was making a clicking sound every few seconds as the liquids were pumped into my body. On top of everything, I was on a major steroid crash from being taken off massive doses of Prednisone (part of the 5-day chemo treatment), amplifying everything I was feeling. AND, the saline drip made me pee every hour, eliminating any possibility of sleep.

I feel like I’m writing a script for a hospital-themed horror movie.

I can’t even begin to describe how relieved I was to see Jason in the morning. I wasn’t much for conversation by that point; it was just nice having him in the room.

Around 8am, I was taken back to Dr. Chang for an assessment of my blood clot. Right off the bat, he saw that the direction of blood flow had returned to normal and that some of the clot had already dissolved. He applied a bit more enzyme and stretched my jugular again with the balloon. This time around, the drugs made me feel like I was the size of an ant and that my neck was on the other side of the room with my doctors. It was bizarre. It made the morning much more entertaining at least.

As they wheeled me back to my hospital room, Jason literally broke down in tears. The nurse thought he was just joking around, but he wasn’t. When Dr. Chang had finished, he had explained to Jason that the procedure looked like it was working and that my blood flow was returning to normal. I can only imagine how Jason felt. This whole time, feeling so helpless and out of control, it must have been such a relief to hear good news. I mean it when I say that I’d rather be in my shoes than his…

I was only in the hospital a few more hours when Dr. Chang decided I could go home. He came to my room and removed all of my tubes (YAY!!!!!!!), and I was discharged.

It’s amazing how quickly the human mind and body can just move on. Within days, I was feeling pretty normal. I did end up going neutropenic around the tenth or eleventh day of my first cycle (neutropenic is when your white blood cell count drops to a point that puts you at severe risk of infection), but with frequent naps I was able to handle the fatigue pretty well.

What I did not handle so well was the side effect of the Neupogen shot. I briefly mentioned it earlier, but Neupogen is a drug that helps bone marrow rapidly produce new cells. In young people with healthy bone marrow, this can be a painful process. On the night of Monday, March 12, I found myself literally screaming into my pillow from the pain in my hips and lower back (pelvic bones). We called the hospital, but they didn’t want me to go to the ER since I was neutropenic (who knows what I’d pick up at the ER), and I couldn’t take any painkillers since they could mask a fever. So, they told me to get in a warm bath and take Benedryl to knock myself out.

Water is amazing. I literally went from screaming in pain to being relatively relaxed in the course of ten minutes. The warm water decreased the pain level to a point where the Benedryl could knock me out. I slept. I now have a nice little prescription for a narcotic in case it happens again. Hmm, I just realized that it’s a drug to manage the side effect of a drug that’s being used to manage the side effect of another drug. Wow.

But wait, there’s more! Only a few days before all of the bone pain happened, my poor Mom and Jason both came down with what we thought was food poisoning. Then, when my sister flew into town Monday night (the same night as my bone pain), she started showing food poisoning symptoms a few days later. Coincidence? Nope. They all had norovirus. How do I know? Because on Saturday night, March 24, I started puking my guts out and, well, it would be TMI if I said any more.

Back to the hospital on Sunday! I was given a liter of IV fluids and a hefty course of antibiotics. On Monday, I returned to the hospital for another liter of IV fluids. After they ran a few tests, it was determined that I had a double duty infection: norovirus and C-Diff (a bacteria that can be in a healthy person's system, but can get out of control in immuno-compromised people, like me).

So there you have it. That was my Cycle 1. There were a few good days spattered here and there, and I treasured every single one of them. Today was a good day! My mom and I even went to see a movie (The Vow). My hair is starting to fall out, which sucks, but I’m sure I’ll be talking about that soon—we’ll see if I get the guts to post some pics.

I want to end this long, and sometimes depressing, post on a happy note. All of the words and actions of love, encouragement, and support have helped SO much. There have been moments when I’m feeling pretty damn down, and then the phone rings, and it’s a friend who called just at the right time to pick me up. Or a package is delivered to the door and it’s something that I didn’t even realize I would need. Or a card comes in the mail with just the right words. I have cried more happy tears than sad during all of this. THANK YOU from the bottom of my heart. Thank you.

Cycle 1 Continued

Chemo sucks. There's no getting around it. I can't be mad, because chemo is saving my life, but it's not a process I'd wish on anyone...

I left off in my last post with me getting my first chemo bag. When I returned home, the first few nights weren't too bad. I was a little tired and queasy, but I could handle it with a few tv shows and movies. Each day over the weekend, I returned to the hospital to have my chemo bag changed. Other than wearing a fanny pack and being pretty dang tired, I could go about my daily business.

Tuesday was the final day of my first cycle chemo treatment. The nurses removed my chemo bag and administered a drug called Cytoxin (the nausea drug) through my IV. Before the infusion, they gave me a triple dose of an anti-nausea medicine known as Zofran. The cytoxin infusion took a few hours, during which I was praying that Zofran would do it's job.

I'd have to say that not knowing what to expect is one of the scariest parts of chemo. You always feel a little on edge--what's going to happen next? How am I going to feel? Everyone reacts differently to chemo, so all you can do is wait and see. Thankfully, I only had a mild upset stomach the night of the cytoxin, not the terrible vomiting that some of the other patients experienced.

The following day, Wednesday, March 6, I returned to the hospital to learn how to give myself a neupogen injection. Basically, neupogen is a drug that forces the bone marrow to make more white blood cells since they become a victim of chemo. More on this later...

On Thursday, March 7, I again returned to the hospital for a procedure to eliminate the blood clot that had formed in my neck a few weeks earlier. When the clot was first found, the doctors at my original hospital believed the best way to treat it was to keep me on blood thinners over the next six to nine months in hopes that the clot would break up into microscopic pieces over time. However, when I was sent to the NIH, I met Dr. Chang, who has a different opinion.

When I first met Dr. Chang, he looked at me, looked at my scans, and then expressed his surprise that I hadn't been sent to him sooner. When I told him that my doctors were going to wait for the clot to break up naturally, he said , "Show me one paper that actually shows that happens." When he said that, I knew I was in good hands.

Dr. Chang developed a clot busting procedure, that if used within one month of clot formation, can completely dissolve the clot. His work is well known throughout the NIH oncology clinics, and everyone loves Dr. Chang. So, on Thursday morning, I found myself sitting in the interventional radiology clinic, waiting for him to work his magic on me.

The nurses took me into a room about the size of an average bedroom. A large X-ray device hung from the ceiling, and a very narrow bed was placed in the center of the room under the machine. I think the Beach Boys were playing softly on the radio.

Nurses were hustling about, setting out the tools that would soon be snaked through my veins. A male nurse helped position me on the skinny bed and slathered an anti-bacterial, blue liquid all over my left arm. Is it just me, or does anyone else get a sense of alien abduction when going through a procedure like this?

After about 45 minutes of set-up, Dr. Chang entered the room. Something I've learned about myself throughout this experience is that my perception of someone's competence affects my feelings of anxiety. When Dr. Chang entered the room, I felt at ease. I trusted him.

First, he used an ultrasound (the use of sound waves to make an image) to assess the extent of my blood clot. As he moved the ultrasound wand down my neck and arm, I learned that I had blood flowing the wrong direction in my left internal jugular vein (the big vein that travels down your neck and normally carries blood away from the head). That's not a fun thing to learn.

When the procedure to eliminate the blood clot started, I was given some nice doses of a very strong pain killer that makes you feel a bit loopy and out of it. They couldn't completely knock me out due to my blood pressure dropping to 90/37 at some point during the process. In the midsts of the haze, I could hear them talking about threading a catheter up through my arm into the vein with the clot. To visualize where they were going, they injected a contrast agent and used the big X-ray machine hanging from the ceiling. Once Dr. Chang reached the clot, he sprayed an enzyme directly onto the clot. He also used a small balloon to stretch and open up my jugular vein. Even with the pain killers, I could feel it!

At the end of the procedure, Dr. Chang appeared happy with his work and sent me on my way to be checked into the hospital as an in-patient.

To be continued...

Day 1 of Chemo

I’m going to attempt to catch everyone up on my chemo treatments in the next few posts. My plan was to write about my experiences as I went, but chemo has a tendency to knock you on your butt a bit :/

My first treatment was on Friday, March 2, 2012. My husband, mom, and I arrived bright and early at the NIH interventional radiology clinic to install my central venous catheter for the administration of the chemotherapy drugs. Basically, a doctor put a small catheter into my right internal jugular vein. Two ports at the end of the line could be used to give me drugs/fluids or used for blood draws. The entire procedure took about an hour (including prep time). The only pain I felt was during the numbing injections, but even still, it’s not something that I’ll look forward to each time (the line is removed during each cycle).

From the IR clinic, we walked to the oncology outpatient clinic. I was lead to a very nice, comfy chair by the window and given a menu to order breakfast. There I sat, with my freshly shaven head, waiting to start pumping toxic poisons into my body to save my life. Ironic, right?

I was immediately put at ease when I met my assigned nurse, Pia. She is an energetic, experienced, very competent woman who walks with a purpose. About 5 foot 8, attractive, and athletic, Pia made me feel like she would kick my cancer’s ass if the chemo didn’t. Without hesitation, we jumped right into the process.

Pia gave me my first high dose of Prednisone, a strong steroid that is used to help make the tumor cells susceptible to the chemotherapy. Following the Prednisone, she hooked my central line up to a solution containing an antibody called Retuximab (the R in R-EPOCH). The antibody recognizes a protein on the tumor cells called CD20. When Retuximab binds to CD20, it causes the tumor cells to self-destruct. Genius! The only problem with Retuximab is that part of the antibody is derived from mice, so the human body quickly wants to reject it. To help me tolerate the Retuximab infusion, Pia loaded me up with Benadryl, which did the trick. During the 3-ish hour infusion, I was fairly drowsy and felt like I could only talk in slow motion. The only side effect I experienced was a mild itching in my throat.

When the Retuximab infusion was complete, Pia attached my first chemo bag. It was about the size of a DVD case and contained a liquid that resembled orange Gatorade. The bag was connected to a portable pump the size of a small brick, which continuously pumped the chemotherapy drugs into my blood stream via my central catheter. Both the bag and pump were placed in a small black fanny pack. With my fanny pack securely attached to my waste, and many many drugs in hand, I was sent home.

The entire thing is truly mind-boggling. For most of my life, I never really needed to take any medicine. I would pop a few over-the-counter pain meds for the occasional headache, but even that was far and few between. Now, I am taking mega doses of Prednisone, Prilosec, colase tablets, senna fruit tablets, antibiotic pills, and anti-nausea meds, all to mediate the side effects of the toxic chemicals being pumped through my body. It’s a huge mental adjustment for me.

Tomorrow, I’ll write a bit about that first night home and the following four days on the chemo bag. Plus, I have quite the story to tell about a procedure to eliminate my blood clots. AND, much to talk about concerning what happens during the days AFTER the chemotherapy infusion…

The Hair

For a woman, losing her hair can rank right up there with pain, nausea, and fatigue as one of the worst side effects of chemotherapy. Let’s face it, we live in a society where outward appearance matters. I’ll admit, there were times, on occasion, when I’d get frustrated if my hair didn’t fall the right way. But it’s funny how life works. Sometimes it takes a problem to know a problem. It’s all relative.

When I found out that hair loss would be guaranteed on my treatment program, I knew immediately that I wanted to donate my hair to another person rather than to the shower drain. There have been many times in my life when I considered donating my hair; I just never had the guts.

I had a second reason why I decided to shave my head. When you get a diagnosis of cancer, you feel very out of control. Believe me, I am a type-A personality who did everything possible NOT to get cancer. I eat organic fruits and vegetables, use sunscreen, limit my exposure to household cleaning agents, exercise, use natural deodorant, and the list goes on. So what do you do when you get that unexpected curve ball? Improvise. If chemotherapy was going to take my hair, I was going to do it first.

I invited all of my girlfriends in my neighborhood to my house on the evening of Thursday, March 1, the night before chemo was to begin. I figured I’d need the love and moral support of my friends, but I also felt like I might be less embarrassed when everyone saw me with no hair if they were part of the process. It was the best decision I could have made. They were happy and excited, and it really put me at ease. In fact, it felt a little like a party.

My hair, from scalp to tip, just met the donation length criteria, so we tied all of my hair into little ponytails and cut right at the scalp. My husband (who I can honestly say loves me for me) then shaved my head. And yes, I shaved his too.

I thought I would feel liberated and in control. Honestly, I didn’t. I felt something so much better: LOVED.

Everyone immediately began telling me how beautiful I looked. I knew all along that it was just hair, and that it would eventually grow back, but it felt good to hear the words of encouragement. If anyone reading this ever has to go through something similar, don’t do it alone. The love and support of your community will help more than you can possibly know.

So, after MANY requests, the pics! In my next post, I’ll talk a little about my first cycle of chemo.

Until then, here’s to women: we’re so much more than our hair!

The Background and Beginning

This is my story. I am a 29-year-old mother of a 14-month-old baby boy and the wife of a wonderful husband. A few months ago, I would have likely started my story with a description of my career, but some life experiences have the tendency to rearrange priorities.

On February 21, 2012, I was diagnosed with Primary Mediastinal Large B-Cell Lymphoma (PMBL). But before I move forward, a look back at the events that lead up to my diagnosis.

It was the day before my son, Zachary, turned one year old. On December 21, 2012, I felt a small lump above my central right collarbone. I’d had swollen lymph nodes in my neck during previous colds, but this lump just didn’t seem right. That morning, I called and made an appointment to see a doctor. I was first referred to a physician’s assistant, who was sure the lump was a simple muscle spasm and told me to return home and improve my posture. She said that I was young and healthy and just needed to keep my stress levels low.

Both my husband and I felt like we weren’t taken very seriously (I also had a strange set of rashes forming on my legs and a general feeling of fatigue most of the time). I made a second appointment two weeks later when the lump appeared to be growing bigger. I saw a doctor who was sure it was a lymph node. He sent me for a chest X-ray, but nothing appeared abnormal. We now know that I did indeed have swollen lymph nodes, they were just mistaken for a large aorta in the 2-D X-ray.

Trusting my gut that something was seriously wrong, I made a third appointment with a different doctor. She scheduled me for a CT scan to be taken a few days later. I finally felt like someone was listening. The moral of the story so far: be an advocate for yourself.

Immediately after the CT scan, the radiologist called me into the room and explained that I had multiple necrotic lymph nodes (lymph nodes that were dying on the inside) throughout my chest and neck. He explained that the scan was very concerning and alarming, and set the ball in motion for me to see my doctor that afternoon.

I was quickly referred to an ENT specialist. I couldn’t have asked for a better doctor. He was thorough, comforting, and took me very seriously. We tried using a fine needle biopsy to collect tissue from the lymph node above my collarbone to get at a diagnosis. When it came back as non-diagnostic (meaning the pathology lab didn’t have enough tissue from the biopsy to run the tests), we tried again a few days later with no success. I was immediately scheduled for surgery on Monday, February 13, 2012.

My doctor went through the base of my neck to collect tissue from the lymph nodes in my chest. The surgery went well, and pathology had plenty of tissue to make their diagnosis. More waiting began.

Two days after the surgery, I noticed that the underside of my left arm was beginning to feel slightly swollen. Over the next two days, my left arm began to hurt and turned slightly pinkish/red. Not wanting to take any chances, we went to the hospital. After a quick ultrasound, I was diagnosed with extensive blood clots in some of the major veins of my left neck and clavicle area. I was admitted to the hospital as an in-patient.

While the doctors worked to thin my blood to a therapeutic level, my diagnosis came in from pathology. On February 21, 2012, exactly two months after I felt the lump above my collarbone, my ENT doctor entered my hospital room. At the time, I was still hooked up to the heart monitors that measured my blood pressure and heart rate, and if my heart started beating too fast, the bells would go off. You can only imagine what happened when my doctor sat down before giving me the news—you don’t sit to give someone good news. The alarms around my bed were buzzing as my heart jumped from around 80 beats per minute to 147 beats per minute in the time it took my doctor to sit down. Through the dinging and chaos, my doctor told me I had lymphoma.

At that moment, I was in listening mode. I had pictured in my head how I would react if I were to hear that news, but I’m not sure anyone can really prepare to learn that they have cancer. I just listened. I listened to him tell me that I had a rare form of lymphoma that starts in the B-cells in the thymus and that spreads to the mediastinal lymph nodes of the chest; hence the name Primary Mediastinal B-Cell Lymphoma.

I listened as the oncologist who entered the room a few minutes later explained that it’s a type of lymphoma that needs aggressive treatment. I know I asked a lot of questions, but I honestly don’t remember a single word that I said. I only remember the feeling.

In the midst of the fear and sadness that I felt from the diagnosis, there was also a sense of relief. At least I knew what I had. There was no more waiting for answers. I had my cry—many cries—but there is a time in everyone’s life when you have no choice but to find an inner strength that you didn’t know that you had. It takes time and a lot of self-reflection, but it can be found, and when it is, you pull it out and hold on as tight as you can and trust that you’re strong enough to make it through whatever is about to come your way.

The following morning, my doctors rushed into my hospital room in excitement. Apparently, there was a clinical trial at the National Cancer Institute in the National Institutes of Health that was getting very promising results for my exact type of lymphoma. I agreed to meet with the doctors at the NCI.

On February 24, 2012, I stepped as a patient onto the NIH campus, a place where only a year earlier I had worked as a scientist and continue to work as a science writer. It’s a strange feeling to be the patient when you’re used to being the researcher. But I trusted the doctors at the NIH, and I knew I was walking into good hands.

During my first meeting with my team of doctors, I was blown away. They were so knowledgeable and eager to get started with my treatment. They were straight forward, but kind. Without a doubt, they gave me hope—a hope that I may not have had only ten or fifteen years ago.

To understand the progression of my disease, they had me undergo another CT scan, a PET scan, and a bone marrow biopsy. My CT and PET scan showed that my lymphoma had not entered any of my major organs; my lungs and abdominal organs looked clean. Relief. We’re still waiting on results from the bone marrow biopsy.

I began my treatment on March 2, 2012. I am receiving a type of chemotherapy called Dose Adjusted R-EPOCH. Each letter in the name stands for a different drug. There are a few main differences that set this type of chemotherapy apart from other chemotherapy regimens. First, I wear a pump that delivers the chemotherapy drugs over the course of five days at the beginning of a 21 days cycle. Second, the amount of the chemotherapy drugs may be increased during each cycle (there should be about 6 cycles). Third, an antibody that recognizes a protein on the tumor cells is added to the mix.

So, that’s the background. Over the next few days, I’ll try to catch everyone up on some of the experiences I’ve had on chemotherapy so far. I’ll also post a few pics from my head shaving party (hair loss is guaranteed on this type of chemotherapy, so I decided to donate my hair before losing it).

I hope that this blog will help my family and friends who have questions or concerns. I also hope that my story will help those out there who may be going through something similar.

On we go, one day at a time.