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...