The PET scan still shows activity

Too tired to type a ton right now, but I just wanted to update everyone that I had my fourth post-treatment PET scan today, and it still showed the same activity as the previous three PET scans. So...since the activity is the same, the doctors are leaning towards the activity being caused by my body's response to the chemo and not necessarily residual lymphoma. Without the activity disappearing (or at least decreasing) though, they can't be sure it's not a small amount of cancerous cells left over.

The decision: wait another six weeks and rescan....

I'll type more about how we're doing in post treatment limbo soon!

The Waiting Game

I know it's been too long since I last updated this blog. The past two months have been an emotional roller coaster.

After my first post-treatment PET scan, I had a relatively easy four weeks of waiting. I was so confident that the activity showing up in the PET was inflammation and that the second PET would show little to no activity that I didn't mentally prepare for any other news. On August 2, I received that unexpected news:

After spending my required hour incubating in radioactive glucose and inching my way through the scanner, we happily walked into the oncology clinic--totally unaware that my doctors were stewing over a very confusing scan result. I sat in the paper-covered chair. Jason sat to my left, probably thinking about where we would have our celebration lunch.

After the oncology fellow asked the standard questions and pulled my information up on the computer, he left the room to get my oncology team. I knew something was wrong when Jason went slightly pale as he squinted at the computer screen across the room. At that point, the rest of the meeting became a blur.

The doctors entered the room and explained that my PET scan showed a slight increase in activity compared to my first post-treatment scan. The radiologist also noted that the area of activity appeared as if it had increased in size. My doctors were worried that I still had residual lymphoma and might need radiation.

Some background: In this clinical trial, only 2 out of 48 people needed radiation. For the first time in this entire ordeal, I thought "why me." Honestly, not once did those two little words cross my mind when I was diagnosed back in February, or as I lost my hair from chemo, or as I said goodbye to my period for potentially the last time. I just never questioned why I was one of the unlucky few to get lymphoma.

As I write this post, I'm still not sure why I jumped to the feelings of "why me." I guess I was so confident in this treatment plan after my near-perfect mid-treatment scan that I never accounted for the possibility that I might need radiation.

The doctors scheduled a CT scan for the following week to determine if the area with PET activity showed any abnormal tissues. I'm not going to lie, those six days of waiting were really hard. At one point, I just felt like I completely lost hope. Radiation can be very successful, but as you start checking off the boxes of treatment options, it gets a lot scarier.

When I reached that low point, I called my coordinating nurse. I know that a lot of people would just want to hear someone say, "oh, I'm sure it's nothing," but I needed to hear exactly what the doctors were thinking. I really appreciate how honest she was. She explained that the doctors were leaning towards residual lymphoma, but that we definitely couldn't jump to conclusions without seeing the CT scan. She also reassured me that--if it came to it--the NIH radiation oncology team is amazing, and that I'd be in good hands. She also gave my information to the on-call doctor who later called me and spent an hour on the phone going over every possible outcome of the scans and what it would mean for my treatment. Any doctors reading this, there is no way to put into words how much it means to the patient when you spend that kind of time helping us.

After talking to my nurse and doctor, I did feel a lot better. This time, I was mentally prepared for any bad news from the CT scan. THANKFULLY, the CT scan showed no growth or abnormal tissues in the area. The doctor even pulled up my scan to show me exactly what he was looking at and measuring. They decided to wait another 4 weeks to see what would happen in the PET scan over time. Believe me, it's much much easier to wait four weeks after a good scan than 4 days after a bad one!

Fast forward the four weeks: My third post-treatment PET scan still showed activity, although this time it hadn't increased. Since my CT scan a few weeks earlier looked good, and there was no increase in the PET activity, the doctors decided to wait another 4 weeks and repeat the PET and CT scans.

Here I am, waiting for my fourth post-treatment set of scans on October 4th. Jason and I have attempted to get back into the swing of things. We've been attending family events and exploring Washington DC with Zachary. I've started writing again for work, and my hair is even starting to grow back. But even though life is slowly returning to something of a normal, it's completely different than before my diagnosis. I live life in four week increments at the moment, because after four weeks, I have no clue if I'll be cancer free or not.

So, here's to four weeks of enjoying life to the fullest!

The Verdict Is In....Wait 4 More Weeks

So I had my post-treatment scans on Thursday (sorry for the delay in posting here). I have mostly good news: My CT scan looked great. Only a very minor amount of scar tissue remains. My PET scan, however, showed a small amount of activity in my chest.

The doctors don't seem worried yet. Apparently having a small amount of activity in the PET scan is common for this type of lymphoma and treatment. Unfortunately, current PET technology can't dissociate inflammation and active cancer, so interpreting PET images can be a little tricky.

Most likely, the activity in the scan is inflammation caused by my body trying to break down scar tissue. To be sure, I need to repeat my PET in four weeks to verify that the level of activity is stable or decreasing (an increase could indicate that I still have active lymphoma, in which case we would move on to biopsy to confirm).

While I was hoping to have a clean PET this first time around, it looks like I'll have to wait a few more weeks to hopefully hear that news. In the mean time, I'll have my little Zachy to keep me busy!

Cycle 6 Week 3

Wow, time flies. I can't believe that it's already been two weeks since I last posted. My sixth cycle of chemo went really well. The days when I was hooked up to the chemo bag passed fairly quickly, which means I made it through all of my chemo cycles without having any pump problems or chemo spills at home, yay!!!!

My final day in the clinic with my nurses was a little surreal. I've spent the last four months relying on these men and women to make sure my vitals are ok, ensure that I receive the proper drugs, and stand ready as a trusted source of information and support. While I was happy to be finished getting toxic chemicals pumped through my veins, I wasn't happy to be ending my visits with these amazing people. My time spent on chemo was a lot better than I thought it would be because of them.

I was also sad to be ending my frequent meetings with some of the other patients who were/are on the same treatment. As much as my friends and family have helped over this trying time, no one can understand as well as the patient in the chair next to me who's summoning the same hope and facing the same fears as me. Plus, sharing side effect stories made the whole thing feel something like a club--albeit one that no one would want to join! But we were in it together, and sharing our stories during our clinic visits made the experience a lot easier. During one of my earlier cycles, I met a patient who really wasn't doing so well (same treatment as me). She was barely able to eat, completely depressed, and feeling utterly alone in her situation. After a small group of us started talking and supporting each other,  her mood, and condition, dramatically improved. I can't stress the importance that personal relationships play in getting through something like chemotherapy.

For my bad days after the chemo infusions, my sister, Sarah, flew out from Colorado. Having her with me was such a HUGE help, and my mom was certainly relieved to have the additional person around to take care of Zachary. Plus, Sarah and I did some serious wedding planning for her wedding next year. I've been the most tired this sixth cycle, so sitting around looking at wedding stuff online was a welcomed task. Other than that, I think I slept more hours than I was awake during the second week of the cycle!

I'm currently in week three of cycle six. I'm not recovering from the fatigue as quickly as I did during the first five cycles, but it's not terrible. My hemoglobin (the stuff that carries oxygen around in our blood) hasn't rebounded as quickly as usual, so that's probably contributing to the tired feeling (and headaches I had for a few days), but so far the doctors don't think a blood transfusion is necessary. I'll keep my fingers crossed that my counts increase by my next blood draw on Monday.

On July 5th, I get my end of treatment PET and CT scans. Sometimes I feel calm about it, sometimes I feel like a basket case. I'm trying to keep the same attitude I had going into my mid-treatment scans: hopeful that I get clean results, but not expecting anything. The doctors have warned me that many patients do show some activity on the PET scan, but that the activity can simply indicate inflammation, not active lymphoma. If that's the case, they will rescan in another six weeks. I don't know about you, but that does not sound like a fun six weeks to wait...

So that's where I am. I truly can't believe I've already finished six cycles. I won't say that it feels like it went by quickly, because it doesn't feel that way. There were days when I was taking it minute by minute, and the hand on the clock couldn't move fast enough. But with the help and support of so many friends and family, I made it through. Plus, I've noticed that some of the comments on this blog are from people I've never met who were inspired or touched by one of my posts, and that in itself has made me feel like something really good has emerged from something so terribly bad--so thank you all for all of your kind words.

Hope everyone enjoys the weekend!!!

I'm 30!

I finished 30 spins around the sun yesterday. I know a lot of people fear the 30-year mark, thinking this magic age marks the end of youth. Turning 30 will likely be one of the luckiest moments of my life. My lymphoma, if untreated, has the potential to take a life in a matter of months. Without the miracle of medicine, I may not have seen my 30^th birthday. This thought still chokes me up.

I will begin my sixth (and hopefully final!) cycle of chemo at the end of this week. I will admit that I’m a bit nervous. The bad days in cycle five completely kicked my ass. I won’t dwell on it here, but there were certainly moments when I just wanted to go to the hospital and have them put me on a morphine-induced holiday. Somehow I got through it, though, and I know I’ll just have to get through it again. A few days ago, I re-read all of my get-well-soon cards as motivation to face this final cycle.

Other than the four or five bad days, cycle 5 has gone well. All of my good days were really good, which allowed me to go on dates with Jason, spend quality time with family, and even go to a summer party at my boss’s house. Thankfully, my birthday fell in my good days as well. While I didn’t get to do a big 30^th birthday party, my mom took me on a nice shopping spree, and I received some wonderful cards and gifts in the mail. I’ll have to save the big party for when all of this is over and we’re up to hosting a lot of people again. Rest assured, we will start hosting our parties again within the year!

I’ll try to update this blog more regularly during cycle six. The fatigue and stomach cramps caught me off guard during the fifth cycle, so I spent my bad days on the couch not moving and the good days out of the house enjoying feeling good. I’m sure I’ll have plenty of emotions and thoughts to work through during what will hopefully be my final cycle, so I’ll attempt to share those thoughts here as I have them.

I’ll finish this post with a nice story:

I was walking to my car after shopping at Michael’s two days ago when I heard an older gentleman sitting in his car in the parking lot say, “M’am?” I turned around and approached his window to see if he needed anything. The gentleman, slightly hunched over his steering wheel with a head covered in soft white locks, looked straight into my eyes and said, “Is it cancer?” 

I was wearing one of my hats, but it was still obvious that I didn’t have any hair. “Yes,” I managed to answer, slightly surprised by his question, but curious where this conversation was about to go. 

The gentleman continued, “I had it 33 years ago, and here I am today. You’re going to be just fine.” As I held back tears, I managed to whisper the words “Thank you.” I wished him well and continued walking to my car. Once inside, I broke down. I cried and cried and cried, not because I was sad that someone could see that I was going through chemotherapy, but because I was happy that someone could survive so long after having cancer.

The worst part about having a cancer diagnosis is losing my invincibility. I’ve lived a healthy life, and to be completely honest, I never thought this would happen to me. Now I have no clue what the future holds. Maybe my lymphoma will return; maybe I’ll get a secondary cancer; maybe I’ll never have to experience any of this again. The fact is, I don’t know what will happen. I miss feeling invincible. But the old man in the car gives me hope. It’s possible to have cancer and then three decades later tell someone in a parking lot that it’s going to be ok.  

Good News!!!!!!!!!!!!!!!!!!!!!!!!!!!!

As you know, I had my mid-treatment CT scan today. And I quote: "It looks like you are having excellent success with this treatment." The scans showed that my tumors were pretty much gone, and that I had very little scar tissue. Needless to say, Jason and I had somewhat of an emotional breakdown in the doctor's office. Once I finally collected myself, the doctor said that it is very unlikely that I'll need radiation or any more chemo after my next two cycles. Yay!

I have to get up bright and early tomorrow morning for my 7am appointment to start my fifth round of chemo, so I'll keep this post short. BUT, I want to thank everyone again for helping me to get through this. All of your supportive words, encouragement, and prayers have kept me in a state of mind that has been conducive to healing, which has likely been an important component to the success of this treatment. Thank you!!!!!!

Two more cycles to go!



 

T Minus 1 Day Until My Mid-Treatment Scan

I have my first mid-treatment CT scan tomorrow. Keep your fingers crossed! I have a good feeling about it, but like I said in previous posts, I'm trying not to get my hopes up too high. For anyone who is curious about CT scans: CT stands for Computerized Tomography. It's a method that uses X-rays from many angles to make cross-sectional images of bones and soft tissues throughout the body. CT scans are the standard imaging method for assessing lymphoma, which has a very characteristic appearance in the CT images. While I will always have scar tissue from the tumors, the hope is that the scan will show significant tumor shrinkage.

The past week has been great! One of my closest friends, Shawn, visited from Seattle for a long weekend. We got some much needed girl time, went out to eat, and had a great time playing with Zachary. We even made her suffer through all of our family videos, hehe. Her visit was a nice reminder of the normalcy I look forward to getting back to...

Monday was the first day since the beginning of February that Jason and I were on our own. We have had a constant stream of family and friends drive and fly out to take care of me and Zachary, for which we are eternally grateful. But, I have to admit, it feels wonderful to have the townhouse to ourselves. Unfortunately, it means that Zachary has to be at daycare the entire week (I can't have him home while I'm alone since I can't change his diaper after the intestinal infection fiasco). I'm pretty sure I miss Zachary more than he misses me though! He has a BLAST playing with his friends at Samina's (an in-home daycare we use in our neighborhood). As soon as I drop him off, he gives me a kiss and says bye in the sweetest little voice that can't help but remind me how quickly he's growing up. I love that little guy so much!

Zachary (and Jason and I!) will be very excited on Friday when his grandparents (Jason's mom and dad) and his Great-Grandma Bev come for a visit. They'll be staying for Memorial Day weekend, and then Jason's mom will continue to stay with us until mid-June. As much as it sucks to go through this, it's been a blessing to be able to spend so much time with family and friends. I'm still a bit in awe how people are willing to drop their own lives to spend significant amounts of time helping us. Not only do the visits help me, but they also give Zachary a chance to spend quality time with his extended family.

Check back tomorrow for my scan update. I'll be sure to post as soon as I get home!!!

I'm A Little Trooper

I love when Jason calls me his little trooper. Something about it just cracks me up. I do feel like a little soldier, marching along, each chemo cycle a small battle to win the war. I have everyone's cards and letters lined up on two shelves in the kitchen, like a steadfast army of positive thoughts and motivation. Thanks to all for joining the fight!!!

I'm happy to report that my 4th cycle of chemo treatments went well. All of the chemo infusions progressed smoothly, and the side effects were minimal. In fact, the entire week I was dreading today (when I normally start feeling like I have the flu), but I'm really not feeling too bad, thankfully. I feel a bit like I'm tip-toeing through the next few days, just waiting for the side effects to start. BUT, I'll just take it one day at a time and finish out cycle 4 on a positive attitude.

On May 24, I'll have my first CT scan since starting treatments. This is a moment that I both eagerly await and fear. That CT scan is either going to confirm my hopes and propel me through the final two cycles or force me to find a whole new kind of strength. I have no clue how I'm going to handle sitting in the doctor's office waiting for them to give me the radiologist's report. I keep imagining the best news possible to help keep my spirits up during treatment, but at the same time I don't want to set myself up for unrealistic expectations. It's a tough balance to find.

Until then, here's to finding the little trooper in all of us.

Cycle Four, Woo Woo!

Half way there!!!!!!! From this point on, there are more days of chemo behind me than there are ahead.

I'm live blogging from the day hospital while I get my Retuxin infusion. Even though I'm about to get five more bags of chemo pumped into my system, I can't help but be in a good mood. I had a great week. The insertion of the catheter into my neck this morning was completely painless. I'm having a nice conversation with the lady sitting next to me. Zachary is having a ball playing with all of the family visiting. I have words of encouragement pouring into my mailbox, phone, and email every day. Life is good.

I Still Use Shampoo

Between the sympathetic glances of strangers, I try to find normal. It shows up in odd places: in the smell of freshly cut grass, in the random telemarketing call during dinner, or in the scent and feel of shampoo.

I’m thankful that I’ve had nearly six great days in a row. With the exception of baldness, I’ve felt relatively normal for the past week. On Saturday, Jason and I decided to do a date night, which was wonderful. We saw a matinee movie and then went restaurant hopping in Old Town Alexandria. One fondue, six Spanish tapas, two cupcakes, and one coffee later, I was fat and happy! The night felt normal.

If such a luxurious night felt normal, I guess I’ve been one lucky girl my entire life.  

Wow, that sucked

The past week was a bit rough. Starting on Thursday, the effects of my third cycle of chemo started to kick in. I again felt like my body had aged decades overnight, and the heartburn and stomach cramps slowly chipped away at my positive attitude. By Saturday, the fatigue was forcing me to nap every few hours. 

Saturday was an eye-opening day for me. Between my naps, I knew I needed to move. The weather was nice, so I decided to take a walk outside with Jason. During the first five minutes of my walk, I held Jason's hand and leaned on him like a crutch. My feet barely moved inches with each step, and all I could think about was how much pain I felt in my legs and hips. I began talking myself into a dark place, down a hole that's easy to get lost in. Half holding my own weight, half being carried by Jason, I told him I couldn't do it, and we turned around to walk the twenty feet back home. 

At some point within those twenty feet, I looked down at my body. It looked no different than it had three months ago, and yet there I was, a 29-year-old vessel of outward health, being dragged back home. I felt intense anger. Not at the situation, not at the chemo, not at the cancer, but at myself. I wasn't even trying to find the strength to walk. I wasn't one-hundred years old, I was twenty-nine, damn it. Standing on the sidewalk, tears streaming down my face, I made a decision.  I was at least going to try.

Jason, afraid to let me go, cautiously kept one arm extended to catch me should I collapse. After a few steps,  I realized I could walk, slowly, but unassisted. We passed a few neighbors, and I'm sure I looked like a stubborn two-year-old in a temper-tantrum--hands balled up into fists, crying, stomping along in defiance. It was a great feeling.

After my little victory on Saturday, I really thought Sunday would be better. Unfortunately, the fatigue was so bad, and I was so worn out from the stomach cramps, that I slept most of the day. 

By Monday, I felt like something the cat had dragged in. I went to the hospital Monday morning for my scheduled blood work-up, and I wasn't the least bit surprised to learn that I again went neutropenic. Since my blood counts dropped so low, the doctors will keep the chemo drugs at the same level as my previous cycles.

Today, I'm finally starting to feel like I'm emerging from my bad days. I'm still tired , but at least my body doesn't feel so old. I'll attempt to update this blog a bit more over the next few days while I'm feeling ok. 

Until then, thank you again to everyone for all of the messages and cards! I love every single one of them, and I look forward to replying to each of you individually some time soon!

Tired, but good

I can't believe that it's half way through April! I had my third cycle chemo bag removed yesterday, so now it's just dealing with the side effects, again. Not terrible yet! Maybe it won't be too bad this time around?

My spirits are definitely up today. I had a lot of nice visits from friends over the past week, which helps break up the days a bit. Plus, my sister-in-law has been staying with us to help take care of Zachary--incredibly helpful! She made an amazing curry cauliflower soup for dinner while Jason and I were at the hospital yesterday. If anyone reading this is also going through chemo, cauliflower soup is very easy on the stomach during the Cytoxin day.

Having some chemo brain at the moment where I can't really think straight, so I'm going to hop off before I ramble too much... Here's to hoping for a milder Prednisone crash this time around!

Good news and bad news

I started my third round of chemo yesterday. The good news is that I didn't feel any pain when the doctor put the central line in my neck, only mild discomfort.

The bad news is that the blood flow in my left jugular has relapsed back to the wrong direction. The doctor thinks the balloon used to stretch the jugular momentarily allowed the blood to flow properly, but over time the jugular shrank back to it's smaller size, forcing the blood to find an easier route through my neck. The easier route was backward.

Since I'm not having any symptoms from it, he decided not to do a xenograft to determine if the reversed blood flow was due to a new clot or the small size of the jugular. He assured me that my body will compensate and form collateral veins. He also mentioned that I have a really beautiful right jugular vein that can handle the blood flow from my head on its own. The doctor told us that this shouldn't affect my quality of life or lifespan. It's just something I need to keep in mind so that I'm attentive to any symptoms that may pop up.

Another piece of bad news: the pediatrician diagnosed poor little Zachary with C-Diff this week. We'll never know if I originally got it for him or if he caught it from me :( Wow, how did we go from the family with no medical problems to the family with cancer, norovirus, and C-Diff all in a few months? Thankfully, Zachary doesn't seem to be bothered by it in the least. As long as he has a toy train in each hand, he's happy!

I don't want to end this post on bad news. At the end of this cycle I'll hopefully be half way done!!! That will be my mantra for getting through the bad days this time around.

Stupid C-Diff

Just when I thought I'd escaped visiting the hospital during my good week, that dang C-Diff (intestinal bacteria infection) decided to rear its ugly head. Thankfully, I have a very patient father-in-law who drove me to the NIH and waited with me for the test results and the antibiotics. The good news is that I'm not in any pain. I just have to add a few more pills to my around-the-clock regimen. At least I got to visit a few of my NIH friends while I was there!

Feeling Good

Four good days in a row! I finally emerged from my chemo funk on Wednesday. I was still sequestered to the house from being neutropenic, but at least I could enjoy some time with Zachary and go for a long walk around the neighborhood. The cherry blossoms are in full bloom, making the area look like a pink and white cotton candy wonderland. It's beautiful.

Never being really sick before, it's a new experience to feel strength return to my body. I am truly amazed by the body's (and mind's) ability to recover. I know I'm a long way to 100%, and that I will have to repeat this cycle four more times, but even these past few days of feeling well have given me the stamina to get through the next onslaught of chemo. My next cycle is scheduled to begin Friday, April 13.

Last night was the first night of Passover, the Jewish holiday that celebrates the Exodus from Egypt. Normally I would refrain from eating any leavened bread for eight days, but given that my digestive system is already on the fritz, eight days of matzoh is not a good idea. Plus, I'm pretty sure it's a commandment not to follow dietary commandments when you're sick--I think God will understand.

Whoa, hold the phone, did she just say God? Hehe, I have a strong suspicion that many of my science friends are wondering whether or not I believe in God, and if so, why.

As many of you know, I'm Jewish, and at the core of Judaism is the belief in God. However, Judaism is a tricky beast, and I personally know many Jewish friends who strongly identify with the Jewish culture but do not necessarily believe in God. So where do I fall?

I've always believed in God, but not in the "man with a white beard in the sky" sense. It's hard to explain, but I view God as the entity that intertwines all life together. It's that connection you feel with another person during friendship, love, times of excitement or sorrow. God is in the silence of an empty field covered in undisturbed snow, and God is in the hearts of two tearful parents when their newborn baby enters the world. For me, this is God.

I know that feelings of excitement, joy, compassion, love, etc can all be whittled down to the wonderfully complex circuitry of our brains. Believe me, I know, I have a PhD in it ;) And I know that feelings of connection to other people is an evolutionary by-product of being part of a species that survives as a group. My belief in God goes one step beyond these physical aspects of life. God is the miracle that these physical processes exist at all, and I've chosen to view God as the beauty that can be found in these processes.

As for scriptures, I don't interpret the Torah (the Jewish bible) in a literal manner. For me, the Torah is a book of metaphors and commandments that are meant to help find happiness and balance in life.

Over the past few months, I've been told by many friends and family that they are praying for me. Do I think that prayer works? This is something that I've thought a lot about over the past month. My answer is yes. Prayer in essence is thought--but not just any thought--it's a thought that comes from a person's very soul. It's someone's effort to bring comfort to another person. I believe that prayer works, because it has already worked for me.

Whether or not prayers result in the shrinkage of my tumors, the prayers have brought me comfort. Just knowing that someone is out there thinking about me raises my spirits and helps me get through this. On the biological end of things, being in a better frame of mind may decrease stress hormones or affect some other biochemical process. Prayers may, quite literally, help my healing.

I think Jason and I will crash our community Passover Seder tonight. We originally didn't sign up for it since we didn't know how I would feel today, but I think they will make an exception ;)

AHHHHHHHH!!!!!!!

Sometimes I scream so loud in my head that I'm sure someone will eventually hear me. I'm tired, and it's only round 2.

All of your notes, emails, cards, messages, phone calls, gifts, and prayers are like hundreds of little ropes tied to my body literally pulling me through this. I'm teary-eyed as I type this because I know how much harder this would be without all of you. Please know that I will eventually have the energy to call everyone personally, but until then, I sincerely thank you for everything.

Round 2 has had its ups and downs. It started out with an annoying sore throat, but on the bright side, all of the throat and nasal cultures came back negative. It looks like I'm simply an allergy victim of the cherry blossom trees.

My time on the chemo bag wasn't terrible this cycle. All of the anti-nausea meds did the trick, and the five days seemed to pass fairly quickly. The worst part was getting that central line placed in my neck at the beginning. Ugh, four more times....

The real fun didn't start until after the chemo. During the chemo treatments, I'm given high doses of a steroid called Prednisone. After five days, I'm taken off cold turkey, forcing me into a phenomenon known as the Prednisone crash.

A Prednisone crash essentially feels like you're a hundred years old with the flu and a serious case of PMS. Your whole body feels like it was hit by a truck, and you have no control over emotions at all. In fact, I started writing this post sometime during my Prednisone crash, but I couldn't find the energy to finish and post it.

As of today, I'm in my eleventh day of round two. I made it through March!!!! My nurse called this afternoon with information that my blood work showed that I again went neutropenic (not enough white blood cells to fight off an infection). Unfortunately, my mom woke up this morning with a cold--when it rains, it pours. So now it's finding that careful balance between helping me and not giving me her germs. I think my skin's going to fall off from washing my hands so much.

Ugh, this whole thing just sucks so much. Venting time: I hate not being able to take care of Zachary. I hate being afraid that I'm going to catch something from everyone around me. I hate not knowing what's going to hurt next. I hate disrupting my family members' lives. I hate being on more pills in one day than I've taken in my entire life. The words that are flying through my mind right now are not appropriate to write here.

$/&@ cancer! This is so shitty, but I have to believe it's for a reason.

I've learned a lot about myself and others. The words empathize and compassion carry more meaning. I better understand the value and necessity of community. Having this big problem has eliminated a lot of other problems. Not because they went away, but because they are no longer problems.

So, if my bone pain from the neupogen shots sets in tonight, I'll just be happy that I have a pill to take away the pain. And if Zachary has a hard time going to bed, I'll be happy that I have family here to rock him to sleep while I can't. And if my mind goes back to those dark places, I'll be happy that I have a strong shoulder to cry on and so many words of encouragement to read from my friends.

Before I forget! My cancer staging came back as 2A with no bone marrow invovlement! The A means that I didn't have any symptoms. The 2 means that the tumors are only in a few populations of lymph nodes. We caught it before it could go into any organs. I don't even want to think about how different the stage could have been if it hadn't spread to where I could feel it above my collarbone. The doctor said my biggest tumor was around 8 cm. I hope it's already much smaller.

Marching on...

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.